barefootprints

2011-06-29T15:08:00.004-04:00

Just for completeness' sake. I doubt anyone reads here anymore, but I sure would hate to have only part of the story told.
This lovely little lady joined our family on February 22 of this year. Hers was a very peaceful, healing pregnancy and birth. For the first time, I had no bleeding at all while pregnant, and I carried her full-term. She was born via VBAC at 40 weeks 3 days. More of her story is posted here.

Life with four is wonderful. Lenore is a very peaceful person. Of course, anything was going to be easier than our adjustment to three kids, but this was especially smooth. We've all been happy and healthy and we just love her.

We have a very fun family.

2009-12-20T15:33:00.002-05:00

The moment we've all been waiting for, or at least, that I've been waiting for. Dorian and Faith were looking over my shoulder as I was recording this. That's Faith's voice saying "It do's what he do's!" as she's watching the camera. Such fun observations. Anyway, it's a good Christmas present. He's enjoying being more mobile.

2009-12-10T15:13:00.002-05:00

I wish this picture had turned out better, but it shows the day accurately enough. Yesterday was our first school cancellation of the season. We got about 9 inches of snow. The kids had a good time playing outside and attempting to build snowmen. I was putting off shoveling the driveway, which is a massive pain in more ways than one. But Dorian shamed me into it. At about 3, when the snow finally stopped, he announced he was going to clear off the driveway. He went and put on his snowsuit, boots, gloves, and hat, then he went to the garage and got the kid-sized snow shovel, went outside, and got to work. It didn't last very long, but it did help me get over the inertia to get out and work.

In other news, Quinn is finally walking more than he is crawling, only 3 short months after his first step! My other kids were about 2 weeks from first step to full walking, but Quinn is on his own timetable. He still had a two-word vocabulary, along with an assortment of articulate grunts. Our family seems to swing back and forth between speech delay and speech prodigy. Just keeping us on our toes I guess.

Faith continues to be Faith. She misses Dorian while he's at school, but I think we're having fun together at home. She walks around the house singing Christmas carols. I think she will be the soprano in our family, and a good thing too. I can't fake most soprano parts.

I'm 29 as of Monday. I'm not sure how to feel about it yet. But I have my streak intact. This is the seventh birthday in a row where I've been either pregnant or breastfeeding. No, I'm not pregnant. Quinn is still an avid nurser, and I plan to keep with it until he's at least two, and get him through is first two winters. Last year, I was reluctant to make predictions about my status a year in advance, and that holds for this year as well. Heaven knows what next year will bring.

2009-10-25T18:34:00.003-04:00

Quinn is stubborn. Overall, I think that's a good thing. He wouldn't be here if he weren't, plain and simple. But to watch him get around so agilely but still refuse to walk is a little bit frustrating. His physical therapist came to see him on Friday and spent a lot of time scratching her head saying "He's perfectly capable. Why won't he do it?" Here's an example. He's a very good climber, and seems to me to have phenomenal strength to be able to haul himself up on this chair and dance around. So why does he choose not to walk? Maybe some day he'll tell us.

By the way, that's Penn State versus Michigan in the background. We love football season.

Dorian is still adjusting to school. After yet another meeting with his teacher and company, we've agreed to a new protocol that includes his getting occupational and physical therapy, in addition to speech therapy, and he will also have his own aide. I really hope this is what will make everyone happy. What he tells us about school when he comes home doesn't always match the picture that his teacher gives us. He doesn't tell us about how stressed he is, while she has told us about several instances when he has been sad or frustrated trying to figure out what is going on. All he tells us about is the fun he is having. On the one hand, that's a good thing, because he is focusing on what's going right. On the other hand, it would be nice to know if he really does feel the stress that he shows when he's there. Either way, I hope we're really finding an answer to all this.

And then there is Faith, the girl, sandwiched between her two special needs brothers. For her part, she is still enjoying life. She still like the "school" that she and I do together, and she looks forward to Dorian coming home everyday. They are still best friends. The last two Saturdays, they have spent all day playing with each other. They came up for food, but other than that, they were off together. It's great to see the love they have for each other.

Quinn went to nursery for the first time today. He's technically 18 months old, so he is old enough, but we had planned to wait until he was solidly walking at least before we took that step. That was the plan. Then today after sacrament meeting, I took Faith to the nursery, holding Quinn. She went in, and he caught a glimpse of it, and dove out of my arms. I held on and the door closed, so he started crying. I opened it again, and he scrambled to get down and go play. He never looked back. I was stunned. Kurt and I went and enjoyed Sunday School together, and I came for him after Relief Society, just like everything was normal. He was happy to see me, but he had enjoyed himself, from all accounts. He's definitely growing up. He's even getting involved in the bigger kids' play. Here's an example of first-class daddy torture. All three kids wanted in on the action.
We're looking forward to Halloween and enjoying the gorgeous fall. It's a great year for color.

2009-10-11T21:00:00.003-04:00

Quinn still isn't walking...but we're making progress. It's completely in his head. He is physically capable, but I don't think he believes in himself. Each time he has successfully walked, it's because we tricked him into it. I keep thinking that one of these days he'll look down and see what he's doing, gain the confidence, and that will be the end of it. Maybe that will still happen, but I'm still waiting. He's officially 18 months old now. It seems unbelievable all that has happened in that amount of time.

We had a visit from my parents this week. We had fun doing a little local touring, especially to see the fall colors. They don't get much of that where they come from and it's quite a novelty.

I was so hoping for this picture to turn out well, so we could put it on our Christmas card. No such luck. A combination of just not being set up well, and having a cloudy day so you can't even tell how beautiful the hills are with the fall colors, and we have what could have been good and just isn't. But it's proof we were there.

We're looking forward to Columbus Day. I appreciate school holidays now.

2009-09-27T17:39:00.002-04:00

We've finished our second full week of school. Dorian still seems to be enjoying things, and is telling me more details when he comes home. I take that as a good sign. One day this week, as soon as he came home, he had to re-enact what the class did for P.E that day, going on a bear hunt. We have our Meet the Teacher night this week, and we'll see if his teacher agrees that there is improvement. Faith is enjoying her school experience as well, and we're all settling into a routine.

Quinn needs to go to walking boot camp. I had made a goal to get him walking within the week, and didn't accomplish it. I'll reset it for this week. He can walk. He has walked. He won't walk. He doesn't even want to walk while holding my hand anymore. His physical therapist said we'd have to trick him into it, and she was right. I'm anxious for him to move onto the next phase. Part of my motivation is purely selfish, I admit. I'm tired of all of his pants having dirty knees. And once he does start walking, he'll look much closer to the 18 month old he actually is, than to the 12 month old he appears to be. Just standing upright seems to add several months to his age. I've tried to explain that to him, and guess how well that took. So here it is: this blog will be my accountability. Quinn will walk by next week. I will work with him everyday to help accomplish this goal. I so decree it.

2009-09-20T16:31:00.003-04:00

Well, what a liar I turned out to be. Just when I'm saying I'm signing off until further notice, I'm finding that maybe journaling our life isn't such a bad idea after all.

Dorian finished his first full week of school. I couldn't get very many details out of him, but he seemed happy and was excited to go each morning, so I didn't worry too much. Until his teacher called me on day three and said "We need to talk." Uh oh. She detailed to me for 20 minutes how difficult he is in class, with his wandering and non participation. I went on overload within minutes, so those details are a little fuzzy. We ended up having a meeting with her, the speech therapist, the special ed teacher, and the school psychologist. We decided to have Dorian evaluated for occupational therapy as an additional help for him. Kurt and I tried to emphasize that this was still the second week of school and that we knew he would adjust eventually. We also reiterated that he is in no distress over this, and we would definitely know if he were. The supremely frustrating thing is that most of the issues going on would be eased or eliminated if the school district hadn't decided to go to full-day instead of their transitional program. We thought that transitional program was exactly what Dorian needed. Instead, he gets to be among the guinea pigs. And our options aren't great. There are no charter schools nearby, private schools aren't a good option for multiple reasons, and that leaves homeschooling and moving. I did want to homeschool at one point, but it never felt completely right. And moving presents its own problems, so we're working with what we have and praying for improvement.

Speaking of my sons' therapists, Quinn had a visit from his physical therapist this week. It went really well. She said there is no reason for him not to be walking now, that it's all in his head, and we have to build up his confidence. She then lured him away from the couch with toys, and he successfully took several steps before he realized what was going on and crawled the rest of the way. That was on Thursday and I have yet to duplicate that. But I agree with her, it's time for him to walk. He's an excellent climber.
He used to just sit at the piano and pound on the keys. But that's not good enough anymore. It's time to move on.

Faith continues to be herself. She enjoyed her first week of "preschool," although it seems like her favorite part is the special snack each day. We're looking forward to more time with just the two of us, since we've done it during Quinn's naps this week, except for our field trip to visit the cows in the neighborhood. That has worked well. I'm glad I can do something well enough.

2009-09-13T09:39:00.000-04:00

I've taken quite a leave of absence. I doubt anyone is still reading, but on the off chance, I'll update.

Here's the deal. I'm really feeling like this blog has served its purpose. For the last year or so, since Quinn came home, I've felt somewhat obligated to keep up with it. I appreciate those who enjoy reading it. But in all honesty, keeping it up is a reminder of a very difficult time in my life, one I'm glad I'm moving away from. So I'm not even going to pretend that I'm going to update on any sort of regular basis. I tried once a week, and that lengthened into every two weeks, then every month, and now it's just become burdensome. In theory, I'm glad I have a record of our NICU experience, but I can't picture a time when I'll be willing to go back and read it. It's still too painful. So thank you to all those who read along last year, and who have checked up on us since then. I'll still be around, but not regularly. I've taken to Facebook, along with the rest of the world it seems. That's where most of my keeping up with people has been.

Quick updates: Quinn took his first step August 29. He's since taken another step and stood on his own, but has yet to officially begin walking. I've never seen a kid so thoroughly master the arts of crawling and cruising.

Dorian started school on Friday. So far, so good. I'd been dreading it for the last year, largely made more vivid by my experience with Quinn. The idea of handing my child over to an institution just did not feel good. Add to that our district's recent decision to begin full-day kindergarten, and I was a wreck over the whole situation. So I spent a lot of the summer with a feeling of impending doom. But Friday came, the bus came and picked up Dorian along with our two neighbors who are also starting kindergarten, and off they went. I waited anxiously for 3:30 when he would come home, hoping and praying for a good experience. When the bus finally came back, Dorian bounded off with a big smile on his face. I couldn't pull too many details out of him, but he says he wants to go back. That right there lifted an enormous burden from me. Let's hope we continue after that great start.

Faith and I will begin a preschool curriculum this week. I did this 2 years ago with Dorian, and we had a lot of fun with it. Faith is anxious to do something herself. She was disappointed to be left behind, wanting to go to school herself. All too soon, Faith. All too soon.

2009-06-19T19:18:00.005-04:00

We just got back from a Celtic Faire. Aside from the Welsh cookies, the only souvenirs we brought home had very little to do with Celtic culture.
We're looking forward to summer, whenever that decides to get here. It's been cloudy and rainy, with the occasional thunderstorm and even a hail storm. Where is the sunshine?

Quinn continues to learn how to cruise.
He loves the piano. I can't blame him.
I took him to a cardiologist a couple of weeks ago. It was a follow up from the NICU. All babies in utero have an open shunt between their atria, and many babies are even born with it still open. Quinn was no exception. And since we know it's there, it must be followed. So we went downtown and Quinn got an EKG and an echocardiogram. The EKG took 30 seconds, but for the echo, he needed to lie still for 10 minutes. Ha. The tech said he could have his bottle or his pacifier. Ha again. He takes neither. So that was slow going, with a lot of changes of position to keep him happy, but we eventually got it done. Then we saw a doctor whose first name was Harm. I didn't discover that until we were leaving, thankfully. Anyway, he said the shunt is still open, but there's still a very good chance it will close on it's own, and we won't see a difference anyway. It won't affect his health or his activity level at all. You can't even hear it. You have to see it, hence the ultrasound. I asked what the risk was, since we wouldn't notice whether it was there or not. Apparently, it will pose no problem in childhood, but if it hasn't closed by adulthood, it can create problems. So we'll check it again when he's 3. I didn't think to ask until later what happens to kids who have this and don't spend months in the NICU. How would you know? It reminded me of when I asked an optometrist why he was checking me for cataracts and glaucoma and what happens to the majority of population who don't need glasses and don't get these checks. His response was that everyone should see an optometrist. Alrighty then. I'll tell that to my husband who has better than 20/20 vision and therefore would never see an optometrist.

For those who are bored by technicalities, you can stop reading now. I may have come to a conclusion about what went wrong with Quinn's pregnancy. About time, after a year and change. I have spent quite a bit of time over the last year researching various possibilities and narrowed down to two theories, one I had a lot more confidence in than the other. The less likely of the two was that I might have a blood clotting disorder. I finally went and got the blood work for that done about 6 weeks ago, and as I suspected, it was normal. I can rule out that option. My other theory was basically that Quinn never stuck well to begin with. I don't think my body was ready to conceive. Just because you ovulate, doesn't mean you are fertile. I was ovulating, but the luteal phase, between ovulation and your period, wasn't long enough to allow implantation. A normal luteal phase is 12-14 days long. I was nursing Faith, who was a year and a half old, and charting my cycles, so I knew what was going on. I had my first post partum cycle when Faith was 16 month, and had a 6 day luteal phase. Waaaaaaay too short. My next cycle, I had what I thought was an 8 day luteal phase, but it turns out I was pregnant. It tried to implant anyway but it didn't work and I miscarried. Incidentally, that's the miscarriage whose due date was two days after Quinn was born. So I tried a progesterone supplement with my next cycle, and Quinn stuck, but still not very well. Of the 26 weeks of that pregnancy, there were about 6 in the middle where I wasn't bleeding to some degree. And this theory was more or less confirmed by the pathology report on the placenta. I had to hound a bunch of people to get it, and it took nearly a month, but I finally got it earlier this month. Basically, the placenta never attached deeply enough, and so was malformed. Parts of it were dying, and it was more than 60% detached. So not only did I pretty much confirm that theory, I laid two other questions to rest: 1. How much better off things might have been if I'd held off labor a bit longer. They wouldn't have. The placenta was completely deteriorating, and wouldn't have lasted much longer. And 2. Whether the c-section was truly warranted. I think it was. With an abrupting placenta, and the cord inserted so that it could easily become detached, I think c-section was the best course of action. It's nice to not worry about those anymore.

2009-05-26T15:11:00.005-04:00

Compare these two photos.

Need I say more? We love spring!
We had our first really hot day last week, so out came the pool. It was glorious.

Then Dorian got the brilliant idea to go "fishing."
We're looking forward to summer.

Meanwhile, Quinn continues to bowl his way toward independence.
He's so happy now that he can get around by himself. Not that he was ever very cranky, but he's even happier than he was before. I can't wait to see what he grows into.

2009-05-10T20:11:00.003-04:00

In some ways, it's been nice not to keep this up too regularly. It means that there's no news, and in my book, no news is good news. But on the other hand, Quinn is at a really exciting time of development. Since my last post on his birthday more than a month ago, he has become a master crawler, and is beginning to pull himself up on the furniture. Here's his latest trick.
We've also enjoyed getting out and about, which we had avoided all winter. We're really enjoyed going to church as a family again. I had taken time away, because church is one of the two places people will still go to even if they are sick, the other being the grocery store. But we've been back in action for a month now, and so far so good. We've also had other outings, like play dates at the park. One turned into an impromptu activist moment. At the last minute, I decided to take the kids and go with some friends to one of the Tea Parties on April 15. It was held at a park right on the Hudson, and we had a gorgeous day to overlook the boats on the river while we showed our distaste for government spending.

But mostly, we've led a pretty tame existence of regular church on Sunday, play dates, trips to the library, and getting Dorian ready for kindergarten in the fall. All the while, we've enjoyed a gloriously gorgeous spring. Our trees blossomed, and now most are fully leaved, and the lilacs are in bloom. I'm anxious to see if the robins come back to their nest by our front door. It would be the third year in a row, and this year, I'm going to take pictures if they do. We just got ourselves a new digital camera, and Dorian and Faith have loved making videos of themselves.

Kurt and I celebrated our seventh anniversary on May 4, and this one got a lot more fanfare than last year's which was all but forgotten. We've come a long way, literally and figuratively, moving across the country together, and surviving a hellish year last year. I made a video montage to commemorate our relationship, and it was cathartic to go through the photos from last year, and realize just where we've been and where we are now. I'd rather not post it here, but if anyone is really interested, leave your email address, and I'll send you a link. I'm glad I did it. I'm grateful for all we've come through, and I look forward to years to come together.

2009-04-04T20:01:00.007-04:00

Well, here it is, the day I've simultaneously looked forward to and dreaded. Happy Birthday Quinn.
Dorian and Faith were ecstatic to be celebrating a birthday. Thank heaven for their enthusiam.

I think Quinn was a bit overwhelmed. I would be too if my candle were that brilliant.
He didn't actually eat this, just smash it a bit.
I feel like I ought to have something profound to say at this point, about all the things I learned that I never wanted to know, how I feel like a stronger person, how far we've come, and what a miracle Quinn is. The truth is, I'm still sort of living day to day, trying not to make long-range plans. My goal for today was to survive it, and a supporting goal of not thinking about what was happening a year ago whenever I looked at the clock. I think I was pretty successful in that. I'll save the philosophizing for a less momentous day. Suffice it to say we've done it: survive a year, survive winter, and survive the birthday.

2009-03-11T18:37:00.002-04:00

It's spring!

We still have a few things to iron out before we venture back into full swing life again, but we're definitely excited for the first day of spring. We've had relatively mild weather the last week or so, and almost all the snow is gone. We've taken advantage of the weather to play outside, but we had one big monkey wrench thrown into those plans. The Plague hit our house last weekend. Well, not really, but it seemed like it. Kurt came home from work sick: fever, cough, chills. We went to great lengths to limit his contact with the kids, especially Quinn. We thought we were successful until Sunday when Faith and Dorian woke up feverish with coughs. They spent most of Sunday in bed, and part of Monday, and then seemed to be completely back to normal. And we thought we'd dodged a bullet with Quinn...until Tuesday when he spiked a fever, and the cough he'd already had for a month ramped up a notch. The fever last exactly 2 days, but the cough is lingering. And once again, I seem to be immune. It's been more than 3 years since I've had any sort of respiratory illness. Kurt thinks it's a literal miracle that I've been spared this whole winter, while this is the third time he's gotten sick. That's quite possible. What would happen if I were to get sick? Mass pandemonium. So, I've been spared yet again. But needless to say, I'm done with illness. I'd count down to the days when we can be healthy again, except that I'm not sure when that will be. I've been in wait-and-see mode for more than a month, and it's wearing on me. We're almost there...we're almost there...We have two weeks until Quinn's first birthday. And then we will have survived quite a year.

On a slightly different note, I've been experimenting with our camera's video capacity. This is poor quality, and I'm not very experienced at keeping it steady and so on, but who can resist a laughing baby? The giggler in the background calling out "Lemme see!" is Dorian. He loves making his baby brother laugh.

2009-03-09T16:05:00.003-04:00

Brittany, this one's for you!
My sister requested I post a picture of Quinn sitting up. He just mastered this skill. He would have been 8 months old, so that's just about right, based on my memories of my other kids. He also just got his first tooth, so we're moving right along, and he's fifteen and a half pounds. He's been sick for three weeks now, and I'm so ready for spring weather and sunshine and warmth and health. He has had the same annoying cough that Dorian, Faith and Kurt got. Everyone else is healthy again. This too shall pass.

With Quinn getting his first tooth, I've reflected again on something that has struck me in the past. Before I had kids, I heard all these stories of what it was like to have babies around the house, the things that just come with the territory. Here's a short list of some of those things that I haven't had to do in nearly five years and three kids.

I've dealt with one ear infection.
I haven't dealt with colic. If my kids are crying, I can almost always identify the cause.
I can count the number of times each child has spit up.
Putting things other than food in their mouths doesn't seem to be something that appeals to them.
The only way I've noticed a new tooth is by seeing it. My kids don't show any symptoms of teething.

I'm not saying it to brag. I just find it interesting.

2009-02-26T20:20:00.011-05:00

Happy birthday Miss Faith!
Faith had been talking about her birthday since last summer. But when I asked her first thing this morning how old she was, her immediate response was two. I told her she was now three. She protested, as most two- to three-year-olds do, until she realized the day had finally come. She'd been waiting for months and it was finally her birthday. She wanted to put on a fancy dress and a birthday hat. The closest thing we had was the cone-shaped hat from her dress-up set that you see in the picture. But that was good enough for her. And we made her cupcakes this morning, in super-duper strawberry pink. Waiting until Daddy came home from work to eat them was agonizing for both her and Dorian. But they held out, and I'm sure the reward for their patience was sweet.
Poor Quinn felt a bit left out.
I'm not sure what we're going to do for his birthday. Dorian and Faith each smushed around a cupcake for their first birthdays, but Quinn will be the equivalent of 9 months old, which just doesn't seem old enough to me to be eating cake. I still have about 5 weeks to figure this out. But on the other hand, we only have 5 weeks until Quinn's first birthday. That also means we only have about 5 more weeks of winter. Hallelujah! We definitely need some fresh air.

Illness has struck our family. Everyone but me has had the same respiratory complaints for going on two weeks. Dorian got it first. He woke up hoarse and coughing and spent the day curled up on the couch with a fever. The next day he was better. Then two days later, Faith and Quinn were both feverish, followed by coughing. Kurt too is stuffy. I'm ready for health to be restored.

Quinn being sick of course has me worried, especially with a respiratory illness. Our doctor isn't too concerned. I talked to her, and she confirmed what I thought, that there wasn't much that could be done for him with a viral infection. We're just watching and waiting. And really, other than the periodic coughing, he hasn't slowed down at all. He's just as energetic and alert as ever. I took this picture of him earlier this week.
That little booklet was sitting on the edge of the table. He pulled it off and began to "read" it, turning pages and everything. He can be an intense kid. But he's also a happy and social one.
And life is good.

2009-02-12T20:52:00.005-05:00

Where oh where did the Fackrells go?

The short answer is nowhere. I've just felt like since my life is on eternal round right now (is that blasphemous?) that I didn't have much to report on anymore.

Let's see, uh, there's this:

He's not crawling yet, but he's up on hands and knees and rocking. And then, look out world!

There's this:
Kurt had a birthday February 4. And yes, that's a carton of ice cream with candles stuck in it. Kurt isn't a big cake fan, and decided he'd rather have just ice cream this year. Made my job easy. Faith's birthday is next, in 2 weeks.

And just for fun, there's this:
Among the things we've done to keep busy is to celebrate the season. These are heart-shaped cinnamon rolls, made by rolling in both edges, instead of just one. My sister Brittany passed that along to me, as well as a recipe for red play dough. For the last two days, Dorian and Faith have commandeered the kitchen table for use with this play dough and cookie cutters.

My mom came to visit about two weeks ago. It was fun to have Grandma time, and to go out and about a bit. Dorian and Faith and I got to almost resume our old ways, going to the library and out to lunch. And Kurt and I got to go on several dates. Real dates! It was amazing! And old man winter brought us a snowday for the occasion. My mom enjoyed that, since it's a novelty to her. The kids were sad to see her go. We're looking forward to summer and time with all grandparents and cousins.

In other news, I got Dorian registered for kindergarten last week. I'm still ambivalent about this. Our district just decided to go to full-day kindergarten, and I'm apparently in the minority of parents who are not happy about this. But more than anything, the process of getting him registered has emphasized the fact that I'm a little bit cracked after this past year of my life. After being expected to basically hand over a child to medical authority (which we didn't entirely do, but anyway) I actually have quite a bit of separation anxiety from any of my kids. And here again, I'm sort of expected to just let Dorian go for most of the day. And yes, I know I can be involved, volunteer in the classroom, do PTA, etc. But let's face it. This is a major change, and I don't think I'm handling it well. I've been a bit vocal in my disappointment at the change to full-day, and all that has really done is make me known to the school board. We haven't even started school there, and they know me. Of course, I have considered homeschooling. And to some degree, we've done that already. Dorian can read a little and count, though he's less keen on writing. And Faith knows a lot too, since she refuses to be left behind in anything. But for multiple reasons, I'm not convinced continuing with it is the right thing to do. Oh, the decisions to be made, and made soon.

2009-01-13T15:31:00.007-05:00

Nothing much new going on. But no news is good news. We've had a couple of snow days this week, one where school was canceled, and one where church was canceled. We were climbing the walls by Sunday night, none of us having gone anywhere for a couple of days. The school closing affects us by canceling speech therapy for Dorian and physical therapy for Quinn. We're looking forward to better weather.

It's hard to believe this is the same baby we brought home from the hospital 6 months ago. He's come so far. Now, most people who don't know his history wouldn't guess it. He's a happy kid who loves his siblings, even when they can be overwhelming, and it's obvious he's anxious to be able to keep up with them. He can push up half of his body at a time, and it's only a matter of time before he'll get the coordination down to start crawling. Now that he's officially 6 months, we'll be starting solids soon. As it is, he's been reaching for my dinner for some time now. I think he's ready, though we'll definitely keep up the nursing for a good long time.

We're doing our best to enjoy the cold weather. Here's my intrepid winter explorer. That's the pond behind him. He had just come running from the neighbor's yard and ran across a corner of it, which just about made my heart stop. Maybe it's a lack of faith, or maybe it's having grown up in Los Angeles, but I can't quite grasp the concept of walking on water, frozen or otherwise.
Faith is much more cautious. There are good and bad points to that.
This next shot may not be for the squeamish. This is one reason I'm not so crazy about the cold. I've never been officially diagnosed, but I seem to fit the description of Raynaud's syndrome, where the cold triggers restriction or even cuts off circulation to my extremities. It doesn't happen as often as it used to, but I had a lovely episode this week, as you can see in my little finger. Pretty freakish, huh?
Have I mentioned I'm looking forward to spring?

2009-01-01T18:45:00.006-05:00

Happy New Year! I don't think I'm alone in being glad that 2008 is at a close. I'm anxious to put it behind me and start over, in a couple of different ways.

We had a nice Christmas. My kids lacked for nothing. My siblings, led by my sister Kirstin, knew we wouldn't be going out too much to go shopping for gifts. So, the week before Christmas, two big boxes showed up at our house full of gifts and other Christmas items, such as this gingerbread house kit that we put together on Christmas Eve.

Now we're properly attired.
And of course, it must be sampled.
The masterpiece. It was tasty too.
Later that night, the kids opened their new pajamas.
Dorian and Faith loved their gifts on Christmas day. Faith's face here says it all.
We had a good Christmas, even when Quinn developed his first fever. It was nerve-wracking for me and miserable for him, but after 2 days, he was fine. We think it was something Kurt brought home from work, because the two of them had parallel symptoms.

Faith's quote of the week: This evening, after the sun went down, she and I were looking out the window at the moon and the evening star. She commented that the moon looked like a smile. Then I pointed out the star. She said "that's a planet." I told her she was right, that was Venus. Then she said "But where's Jupiter?" My budding astronomer remembers last month, when we were looking at this picture. Sometimes she frightens me with the things she comes up with to say.

Here's to a great and uneventful 2009.

2008-12-21T17:05:00.008-05:00

Let it snow!
Kurt came home from work early on Friday, knowing we were about to get pounded by the same storm that dumped snow on Las Vegas. I'm glad he did. He needed some time playing in the snow.
The kids had a wonderful time too.
Even Quinn seemed okay with it.
Here's a fun shot. This is that same picnic table this afternoon, after the Friday storm and today's storm.
This is the pond. Dorian and Faith seem to think they will be going skating soon.
We have a walkway under that snow somewhere.

I love the single icicle hanging from the lamppost.

I'm excited today is the solstice. I'm not thinking of it as the first day of winter this year. I'm thinking of it as the shortest day of the year, and therefore we'll be getting more sun from here on out. We need some sun.

The kids are excited for Christmas and ask daily if it's time to open presents. Not very long now. Then we'll have to think of something else to look forward to, besides spring. We always look forward to spring.

2008-12-14T15:12:00.002-05:00

The storms of life. We're living in a winter wonderland. Those of you blessed not to live in the northeast may have heard we had a significant ice storm this week. It coated trees and power lines with ice, which was very pretty when the moon came out on Friday night. But it also meant some of those trees and lines came down, and lots of people are without power. We never lost power, though we did lose our cable connection, which meant no phone or internet. But that's a minor annoyance compared to having no power for heating. The local high schools and colleges have become temporary shelters for people without heat. And there doesn't seem to be much rhyme or reason to the power losses. As I said, we never lost power, but a mile down the road from us is a traffic signal at a major intersection that hasn't worked since Thursday. Do you remember learning in driver's ed that if you come to a signal that is out, you should treat it like a four-way stop? Yeah, that isn't happening down there. I don't know how many accidents have occurred because of it. But the good news is the roads are well plowed and salted to taste, so as long as wherever we're going has power, we're fine. I had a dentist appointment on Friday, but when I got there, there was a hand written note on the door about their power loss, and they couldn't call some people (like me) because of the phone lines being out. It's been quite an adventure for some.

The storm hasn't dampened the spirit of the season. We got Secret Santa-ed last night. Just as we were finishing dinner, the doorbell rang. On our doorstep, we found a gift with a note about its being the first day of Christmas. We got a Pepperidge Farm tree, made of several packages of Goldfish and Milanos. Dorian and Faith were very excited. So if you're reading this, thank you very much, and I really hope you didn't biff it on our unsalted front walk. That's a bad habit we get into when we only go in and out of the garage.

We're doing well other than the storm adventures. I'm knocking on wood as I say that I think all illness has been squashed in our house. And may it last. No one wants to be sick for Christmas, which is just over a week away. How did that happen?

2008-12-07T10:17:00.004-05:00

Just a little classic 80's movie to mark the day.

Yes, it's my birthday. I was born on the 39th anniversary of the Pearl Harbor bombing, and the day before John Lennon was murdered. Just a couple of iffy signs to start life with. This is my 6th birthday in a row where I've been either pregnant or breastfeeding. For the record, I'm making no prediction as to my status next year. If I've learned anything this year, it's that the best laid plans can all turn to crap.

We sort of had our celebration yesterday, just because things are generally easier on Saturday than Sunday. Here I caught Faith making my cake.
And the kids' favorite part, blowing out the candles.
Kurt made me my favorite chicken and feta dinner, and we watched a lot of football. After all the football games were over, we watched The Two Towers. And then this morning we woke up to snow. And another year passes.

In other news, Quinn weighed in at 13 lbs 4 oz this week, up nearly a pound from last month. He's growing! I think (knock on wood) the illness is on it's way out. And this week's word appears to be favorite. Both older kids are starting to grasp the concept of favorites. Many times in the last few days, I've heard Faith say "You're my favorite mommy." Okay, I admit, that one got to me.

2008-12-03T15:26:00.002-05:00

Tis the season to be jolly again, and our year of the unexpected is almost over. May it never repeat.

We had a great Thanksgiving. The cousins loved playing with each other in the added space in the basement. We had lots of good food and good company, and it was so good for me to have some more adult conversations. Only 4 months to go.

I went to the other ward's sacrament meeting on Sunday morning. I don't know if this will be a long term solution, since we'll trade times with them after the new year, but for now, it works. It was good to take the sacrament, and just be there. And things didn't fall apart in my absence.

We've had snow, but then Monday the sun came out, and it got up to 50, so we went outside to play. We did that again today. I'm all for winter delaying it's real appearance.

I also took Quinn to our pediatrician on Monday. He never did shake whatever he picked up at the hospital, and the last few days, it worsened into serious congestion with yellow snot, and coughing. Turns out he has a sinus infection. Poor kid. I'm sure I've mentioned this before, but I feel like a first time parent again. I remember being pretty anxious when Dorian got sick for the first time. I took him in because he was getting dehydrated with all the throwing up. I was much more relaxed with Faith, and knock on wood, I've yet to take her to the doctor for an illness. Then along came Quinn. I'm sure we'll both grow out of it, but in the mean time, we'll probably know about every bug that works its way through our neighborhood and our church. And the older kids will continue their course. Dorian's gotten into the habit of using a word he just learned in every context, appropriate or not. This week's word is important. Example: "Dorian, it's time to get dressed. " "It's not important, Mommy." or "What do you want for lunch?" "It's not important, Mommy." Alrighty then. Nevermind that I think he's going through a growth spurt and has become a bottomless pit. He ate three bowls of pasta last night, two of his own, and then he finished off Faith's. But that's okay. It's not important.

2008-11-25T14:35:00.004-05:00

What can I say? Holidays throw everything off, even if we haven't actually had that holiday yet. We are very much looking forward to Thanksgiving in a couple of days, and having cousin time for the kids. Kurt's brother and family will be joining us for the occasion. We've been working frantically on our basement in the meanwhile, a work in progress. Eventually, we want to have a play room, laundry/bathroom, spare bedroom, storage room, and workshop down there. It sounds like a lot, but the basement is the whole area of the house, minus the garage. I dream of having a 2 car garage, but I think I'll have to admit that that will be a different house. But I'm happy with the results of the basement so far. We have shelves sectioning off the different "rooms," and a foam rubber floor on what will be the play room. I moved all the toys downstairs, so yay, no more clutter in the kids' bedroom! There is also a TV and DVD player and bean bag chairs. As I said, a work in progress, but so far, Dorian and Faith love it. And I think the cousins will too. And eventually, Quinn will join in the play down there. First he has to master other things. Here's one thing he's got a pretty good handle on. He hates being on his stomach.
So he takes care of that.
and rolls over within seconds of being put down.
He doesn't got from his belly to his back yet. Why would he? He doesn't like that view. But he's getting pretty mobile, and he'll also now reach for toys. So I think we're making progress overall.
He also loves his swing. Good thing too, otherwise I don't think I'd ever get dinner done.

Happy Thanksgiving, everyone!

2008-11-16T20:55:00.003-05:00

I haven't slept much this week. It's been a transition for Quinn to get used to sleeping without covers. I tried layers with long sleeved onsie, socks, pajamas, and a sleep sack, with the space heater going, and then a few days later added a cap to the whole ensemble, and he still woke up around midnight freezing. I finally broke down and added a crocheted afghan, as in, lots of holes for ventilation, but that seemed to help quite a bit, and now he isn't so cold anymore.

The whole ER experience seems a bit surreal now. Did I really go into Quinn's room and find him unresponsive? Did we really have 10 emergency responders in our living room working on him? Did I really sit outside the CAT scan room at the hospital and picture the worst? Unfortunately, the answer is yes to all of them. We do what we can to prevent such things, but they do happen sometimes.

And now Quinn appears to be sick. I don't know whether he got it at the hospital or from something the older kids brought home from church, but he's congested and coughing. I'd asked our doctor at what point I should call her, since I'm not used to bringing sick kids to the doctor, I'm used to treating them at home. She said if he looks like he's having trouble breathing, then call, and he definitely isn't so far. Let's pray it stays that way.

In other news, Dorian had his first teeth cleaning this week. That was exciting. I was worried how that would go, since we've tried in the past and he wouldn't open his mouth. But he did fine this time, and his teeth look good. Yay! Maybe he didn't get his parents' perpetually weak teeth. Today was also his debut in the Primary program. I of course missed it, being home with Quinn, but Kurt reports he delivered his line on cue, and he wasn't the most distracting four-year-old on the podium. And Faith was very sad not to be up there performing as well, surprise surprise. I'm glad it went well, but I'm really sad I missed it. I hope I don't have too many more instances like this. I feel like I'm choosing between my kids, and it's an awful feeling. I felt like that through most of Quinn's NICU stay, where I wanted to be with him, but my older kids needed me as well. I'm hoping the winter goes by quickly. And we know it's coming. This morning, there were three deer in the trees behind our house. We only see them when it gets cold, so winter must be setting in. I'm getting cold just thinking about it.

2008-11-09T13:59:00.002-05:00

Back when I updated this blog daily, I found myself composing that night's entry throughout the day. It got revised based on different events that happened, but by the time I sat down to write, I had pretty much mapped out in my mind what I wanted to say. When I shifted to weekly updates, I did the same thing, only the entry got revised over the course of a whole week. This week's entry probably went through the most drastic revision yet. I had planned to talk about Quinn being weighed this week at 12 lbs 7 oz, and having a physical therapy session, and how much more personable he is becoming day by day, but Friday night changed all that. And just to "spoil" the ending, he's fine, and we are pretty sure it was an accident and won't have any lasting effects, but it was nothing short of terrifying.

Friday evening, I put Quinn down for a nap. I didn't cover him at all, but there was a down comforter at the other end of the crib. About an hour later, as Kurt and I were getting Dorian and Faith ready for bed, I needed to get something out of Quinn's room. He had turned himself completely around in the crib and gotten the comforter over his head. I pulled it off, and he was still breathing, but completely limp and unresponsive. I picked him up, called his name, brought him into the light of the hall and the noise of the other kids, and there was no change. I called 911, and within minutes volunteer EMT's were at our door. Fire stations are plentiful in our heavily wooded area, and we have one just down the street from us. They gave him oxygen and tried to stimulate him until the paramedics came. When they came, they did a heel stick to test his blood sugar, which he didn't even react to. But by the time we'd decided to head to the hospital, he had opened his eyes and was attempting to focus, and his hands and feet weren't quite so blue. Our neighbors saw the lights and came over and stayed with the older kids while Kurt and I went to the ER. By the time we were there, Quinn was starting to move around by himself again. Three or four doctors and as many nurses surrounded him and fired questions at us about his medical history and the night's events (They also complimented us for using cloth diapers. Yay.) Since he was awake and aware, it wasn't as dire as it could have been and things were done pretty methodically. They took blood and urine, looking for infections, and sent him to have a chest x-ray and a CAT scan. He complained about the blood sample, which gave us a lot of hope. It had been frightening to see him so inert earlier. By about 1 a.m. we had the results from the x-ray and the CAT scan, both of which were normal. At that point, they recommended he stay overnight for observation, but everyone was pretty sure it was a one-time event, related to suffocating under the heavy blanket, and that he would be okay. The main doctor we saw was named Fred, and totally reminded me of my uncle Fred. When I asked him what happened, he said "What happened is you got the bejesus scared out of you, but he's going to be fine and dandy." He then commented we must have done something like this before, Quinn being our third child. We said no, and he was incredulous. I described for him the only event remotely similar, which was when Dorian, at two and a half, fell and gashed his scalp open, and we went to urgent care for stitches. He just shook his head and said we were overdue in that case. I'm not sure how I feel about that, whether it's comforting, or foreboding. But we were assured life would resume, as long as we quit using blankets in the crib. That will be a big change. It's cold here, and layering clothing just isn't enough. Hopefully a space heater will take up the slack, but I'm worried about keeping Quinn warm this winter. And as we've already discussed, this didn't happen with my other kids, and I hadn't realized how mobile Quinn had become. To go from relatively stationary to capable of moving two feet away is a big step for him.

After things started to settle, and it was clear that Quinn would be fine, Kurt and I began to comment that this was shaping up to be the most positive experience we'd had at a hospital. That we weren't annoyed with anyone would have been good enough. But everyone was uniformly pleasant to work with. And they were all sure we would go home in the morning. Morning came, and the attending pediatrician came through on his rounds. He was a perfectly affable guy, and Quinn smiled and giggled at him, which was music to my ears. He said Quinn looked great and would get ready for us to be discharged. I called Kurt, who had gone home at about 2 to sleep, so that he could come get us. But here's where the story gets revised a bit. We thought, "This is great. We've had good people to work with, we've identified the problem and how to avoid it in the future, and we're on our way home." But the ensuing 5 hours isn't accounted for in the general slowness of a hospital's pace.

The pediatric resident needed to sign Quinn's discharge form. I had mistakenly thought that seeing the attending doc would bypass all that, but I guess I'm still unfamiliar with the medical feudal system. When the resident came in, he said we needed to repeat the blood sample, because they had too many anomalies in it. It had been taken through an IV in the ER, and that apparently messes with the chemistry enough to account for the problems they saw. Either way, it didn't do good things for my confidence in the ER staff's ability to do things right.

For some reason, it took the phlebotomist more than an hour to come take Quinn's blood. And then we had to wait for it to come back. Kurt and I asked the resident if the results would change whether or not we went home, as in, could they call us with the results and we'll deal with them, whatever they are, through our own pediatrician? But he kept assuring us that it wouldn't be much longer. And then he came back and said the urine sample also had too many anomalies in it, and that needed to be redone. Now I really didn't have any confidence in the ER. Maybe they just aren't used to patients Quinn's size. Let's hope. The resident said what they were seeing was consistent with type I diabetes, and that didn't make sense, given Quinn's age, and a lack of family history, therefore, we needed to do them all again. The urine sample involved taping a bag to Quinn and waiting for him to fill it. Fortunately, that didn't take to long, and by the time it was sent off, the blood work had come back and was normal, so we were released, and told we'd be called with the other results. Thank heaven.

I can't quite describe how we're feeling about it all at this point. I don't think the shock has entirely worn off, so if I seem like I'm describing it with some disconnect, that's probably why. But no mistake, this is the stuff parents' nightmares are made of, and we're feeling blessed that Quinn is fine. We're also feeling better knowing that it isn't because he was a preemie, that this could have happened to any baby. That may seem like cold comfort, but considering what we've all been through this year, knowing that he has normal tendencies as well is oddly comforting. And I'll need that during our long cold winter, where I don't expect to get much sleep.

On a completely different and much lighter note, among my earlier iterations of this entry, before Friday's nightmare, I included this story, for those who enjoyed my pumpkin story last week. Be warned: the f-bomb is dropped at least once. Despite that, I just about busted a gut when I first read it last year. Now of course, I empathize. Where do these vegetarian dogs come from anyway?

2008-11-02T11:57:00.006-05:00

Faith called this a princess cheerleader outfit. She must be a princess, no matter what. And that's not a pom-pon. It's a magic wand. Alrighty then.
Dorian got pretty hot in this outfit. Despite the snow earlier this week, we had a pretty mild day.
And here's baby bee.
The whole crew.
We went to our immediate neighbors and that's as far as we could really go in our spread out neighborhood. Then Kurt took the two older kids to the mall, which was packed, from what I hear. They loved it though. They've asked a few times since when we're going trick or treating again.

We tried to get into a few more of the Halloween traditions which we hadn't done in past years. This is the first year we carved a pumpkin with our kids, and it obviously wasn't meant to be. Kurt sat down with the kids in the kitchen and carved your standard jack o'lantern. Then we made the mistake of leaving it there. We put the kids to bed, and Kurt got in the shower. Then I heard this odd noise, like wood being ground up. It wasn't wood, however. It was our obnoxious hound eating the face off our jack o'lantern. We were thoroughly unimpressed. Kurt thought maybe it looked scarier afterward, sort of like a Phantom of the Opera jack o'lantern. So we stuck it on the porch and lit it. Then some creature of the night came along and ate its other eye and made off with the top, so by morning we had about one-third the pumpkin we'd started out with. Not to worry, the neighbor's dog came over and finished the job. I might just take that as a sign and not do it again next year.

2008-10-26T21:26:00.005-04:00

We enjoyed some nice fall weather this week. It doesn't take long to make a huge leaf pile around here.
And Faith "helped."
Quinn is getting more and more talkative.
We've begun our isolation. So those of you who know us in real life, we'll see you next spring. I told Kurt I wanted to make a paper chain, but he said "Until when?" and therein lies the problem. Just how long will winter be? Who knows. We'll find things to keep us occupied, but it won't be the same, that's for sure.

Quinn had an appointment this week with an ophthalmologist. Despite being clear of ROP, he had another check up. I was really annoyed that we were doing it, given that it's late October, and we spent an hour in a standing-room-only waiting room where about one third of the people were coughing. And Quinn wasn't the only baby being checked out that day. That night, I lost sleep listening to Quinn snore through his sudden congestion. He still has it, but he doesn't have any other symptoms to go along with it. No runny nose, no coughing, no fever, just a rattle in his airway. Very annoying. But his eyes were declared fine, just like they were last time, and the doctor said bring him back when he's 3 and we'll see how he is then. Great. Now we really aren't going anywhere until spring, least of all to a doctor's office when we're healthy.

I realized that we've crossed a milestone this week. Quinn has now spent more time at home than in a hospital. How time flies. And today he rolled over, and I think it was for real this time. Previous times he did that, he was already on a slanted surface. But this time, he was up on his elbows looking around, and rolled onto his back. Yay for progress!

2008-10-19T10:19:00.008-04:00

Quinn is doing his physical therapy exercises. He's getting much better as lifting his head and it's only been 2 weeks since his evaluation.

We spent part of yesterday at the pumpkin patch. It was a gorgeous day to spend outside.
Dorian and Faith have claimed their pumpkins.

"Look Mommy! It's a little baby pumpkin! I have a little baby pumpkin! Where's the mommy pumpkin?"
I have a picture like this from last fall, and yes, they've grown!
The drive home. The northeast is gorgeous this time of year, no question.
I love fall, but we're looking into a lot winter of isolation. It doesn't help that Dorian has learned about seasons and now asks almost daily if it's spring yet. I'll never survive if he doesn't give that up!

The fall also brings election time. I have to say I'm sick of politics and wouldn't mind if the elections were over already. Kurt says that's just because I'm sorry I'm not running for anything. Ha! After hearing my sister Erin's stories about her campaign, I don't think I'll be running for office. She's running for school board in southern California, www.kutnick4kids.com. I'm sure all candidates on all levels are ready for it to be over.

2008-10-12T12:21:00.004-04:00

It's generally well known that when attempting to take pictures, you take several shots and hope one of them will turn out well. The probability of one good shot decreases with the number of subjects. It plummets if any of those subjects are children or animals, both because they are less likely to behave, and because they have less patience and so fewer shots are taken. So without further ado, this is my favorite shot from our family's attempt to take pictures yesterday. It's such a day-in-the-life shot.
This one's a little tamer. I just need to play with the brightness and exposure level a bit. It would have been almost perfect if we could have convinced Monty to look at the camera, rather than trying to follow whatever scent he caught, but that's who he is.
And we are a happy family.

2008-10-06T18:40:00.002-04:00

11 lbs 9 oz, which is off the charts low for a 6 month old, but somewhere around 30th percentile for a 3 month old. I was holding out hope for 12 lbs, but this was pretty close. And he looks great in general and got a clean bill of health, whatever that means. So did the other kids. Dorian got to look at an eye chart for the first time. Thankfully, he got his dad's good eye sight. And Faith told the doctor that she eats cookies for lunch. Dream on! One more thing to check off the list for this week.

2008-10-05T20:34:00.002-04:00

I don't know exactly what Dorian is victorious over, but he looks happy anyway. And why not? Life is good. This picture is from last week. We watched General Conference on the internet today, so no one went to church. Dorian and Faith loved watching the children's chorus sing. Dorian even sang along. Maybe something is sinking in while he wiggles his way through church.

Quinn saw the developmental pediatrician on Friday. The doctor put Quinn through his paces to see if he's on track for a normal 3 month old baby. It's hard to believe Quinn was 6 months old yesterday. How things have changed. Anyway, overall, Quinn performed well. He didn't reach for the toys, although it was obvious he was interested in them. And the doctor commented that it's obvious Quinn doesn't spend much time on his belly, because he doesn't lift his head completely off the table. But that's just a matter of building up muscle. Other than that, he's doing fantastically. He has no signs so far of cerebral palsy, and the doctor seemed surprised that he hasn't been rehospitalized for illness. Apparently that's pretty common. Let's hope it lasts.

Tomorrow I have a three-ring circus scheduled. All three kids are going to have a check up with our regular doctor. Should be fun. I'm anxious to see how much Quinn weighs. It's been more than a month since we've done that, and he's much bigger. I'm even contemplating putting away the 0-3 month sized clothes. Yay for progress!

2008-09-29T20:32:00.002-04:00

Kurt has been upgrading our computers. Like most things, it's a slower process than we anticipated. Consequently, I have no photos this week, and I might have to make the camera and the computer apologize to each other. They currently aren't speaking.

In other news, well, there really isn't other news. Quinn is getting bigger, and we're heading into fall, and looking at holing up for the winter against the sick season. We'll be seeing a developmental pediatrician later this week, to make sure Quinn looks and acts like a three month old baby, but other than that, we're on cruise control. I can't believe the worst day of my life was very nearly 6 months ago. How times have changed.

2008-09-22T10:49:00.003-04:00

I suppose it's kind of flattering to be fought over.

I didn't have much to report this week. After last week, it seemed so boring. And truthfully, I'm more than okay with that. I want some boredom in my life for a little while. Just routine life. That's our aim for now.

Quinn is recovering well. I wonder if he'll even have very visible scars from the surgery. He's still growing, and still becoming more interactive with us. We don't have anything major going on this week, and we're going to enjoy that. Just life.

2008-09-14T10:27:00.002-04:00

Thursday morning at 6:50, I stopped nursing Quinn, beginning the four hour fast required for anesthesia. A little while later, we all got up and began the whirlwind preparations to get out the door. I packed my breast pump and Kurt and I packed books and a laptop. We were still counting on taking him home afterward and so packed nothing else. We dropped the older kids off at a friend's house and headed downtown. Within minutes, I remembered my breast pump was sitting in it's usual spot at home. Oh well. I'd figure something else out. We were going to be just on time as it was, so I didn't want to go back for it.

We got to the hospital and I tried to stop being melodramatic, and force the image of bringing sacrificial lambs into the temple from my mind. We checked in and were told they would take us in soon, because Quinn's time was near. We were keeping him occupied with a pacifier, which he normally doesn't have. He was unhappy with us. I didn't blame him. About half an hour later, we were called into the pre-anesthesia area and given a tiny hospital gown and socks for Quinn.

Over the course of the next hour, about 10 people came over and introduced themselves to us as various members of the surgical team. One nurse anesthetist went over some questions with us, mainly about Quinn's NICU stay, and how his needs there might affect his care that day. She mentioned he was slated to stay overnight. I told her no one had said that definitely, that we wouldn't know until afterward. She left to consult a calendar and returned to say that their policy was that babies be 50 weeks gestation, and Quinn was 49. (If we want to be picky, he was 49 and 3 days. Four more days, and he would have been at the magic 50 number.) Anyway, Kurt and I simultaneously made comments on the convenience of the number 50 and of our skepticism that that was the true number. The nurse was defensive, as well she may have been, and said she was sure the anesthesiologist had data to back up that number. Kurt took over the explanation and said he had no doubt that there was data, but it was unlikely the data pointed exactly to the number 50, that more likely the number was 49, 48.5, or something like that, and had been rounded. Easy numbers like 50 rarely exist in nature. She looked between the two of us, and said, "You two must be mathematicians." She must have said it jokingly, because she was sort of shocked when we told her in a sense we were. Kurt is an engineer, which is applied math, and my background in population genetics and statistics is another form of applied math. She sort of shook her head and said the decision would be up to the anesthesiologist.

We met the anesthesiologist, and expressed our concern about Quinn's previous experience with anesthesia. When he was a week old, he had surgery to insert a central IV line, and hadn't tolerated the anesthesia well. He needed blood pressure stabilization, and what exactly happened varied by who described it to us. The NICU staff used the term "overdose." But one doctor had said the anesthesiologists insisted it was an appropriate dose. We didn't really care. What it came down to was that it was too much for Quinn. If that isn't an overdose, I don't know what is. Anyway, this anesthesiologist said she was familiar with the case, that she had helped review it, and insisted it was an appropriate dose. We repeated, whatever their data said, it was too much for Quinn, and we were worried the same thing would happen. Overall, it was a pretty circular argument, as she insisted it was okay by their data, and we insisted we were still concerned. I honestly don't remember how it got resolved, if at all. It's beginning to blur.

Another nurse anesthetist came to introduce herself and say that she would be taking Quinn back to the OR. I asked if I could go with him, and she said no, they don't do that for babies. I asked why, and she thought for a minute and then shrugged and said "Policy." I fought back a laugh. That was the best she could do? She then said that parents distract the staff from the patient, and they allow it for older children because of stranger anxiety. But babies haven't gone through separation anxiety yet. "I have." was my response. Without any more argument, she left and returned with a set of scrubs, a hair cover, and a mask, as well as a waiver to sign in case I fainted. So much for policy.

By this point, Quinn had been sleeping on and off, and in between times was a little frantic to eat. But he seemed calm as I carried him into the OR. He lay on the table looking around, and it was good for me to see him okay with what was happening to him. Then they put the mask on his face and he fought it and cried. That was hard. I had been told he would take just a couple of breaths and be out, but it took nearly a minute. Then he was asleep and I was escorted from the room. Whoever it was tried to take me by the arm, but I walked out under my own steam. Did I look that fragile?

Kurt and I took up a post in the surgical waiting area. the surgery was an hour late, which wasn't surprising, just disappointing. About two hours later, the surgeon came to talk to us and told us he had been successsful, and Quinn seemed to handle it all very well. He said the hernia on the left side had been humongous and he'd had to do an adult-sized repair job. But everything else looked okay. We asked about taking him home, and he said he didn't have a problem with it, but his wasn't the final say. That was anesthesia's job. He said they probably would have allowed it if we still had an apnea monitor at home, but since we didn't, we had a weaker argument. I guaranteed him no matter where Quinn was that night, I wouldnt' be sleeping. He laughed, but reiterated it wasn't his call. I love buck passing.

About half an hour later, we were led into the post-op area, where a nurse was holding Quinn, and holding blow-by oxygen near his face. He looked bright eyed but a little dazed. She handed him to me, and said he'd come out of anesthesia quite well. He was hooked up to a monitor that showed his oxygen saturation, and it was a little low without the supplement. But other than that, he was okay. She said I could nurse him if I wanted. Of course I wanted. I hadn't pumped at all during the surgery and it had been about 7 hours since Quinn had last nursed. He was sluggish, but still, it was better than nothing. Then the anesthesiologist came over and told us she wanted him to stay overnight and be on an apnea monitor for 18 hours. She said the 50 week mark is really the beginning of a gray area that lasted until 55 weeks, and Quinn definitely didn't qualify because of his prematurity. We get tired of fighting, though I'm sure she could sense my disdain of her data. I said I would be staying with him, and she didn't have a problem with that. Of course she didn't. That wasn't for her to decide. That was up to the pediatric floor, 7 floors above us. More buck passing.

About an hour later, the nurse was going over Quinn's chart with the nurse upstairs who would be taking care of him. She noticed that the urologist had ordered Toradol for his pain medication, and was confused about that because it was related to ibuprofen. I said I had thought ibuprofen wasn't given to babies younger than six months, and she agreed. One of the surgical team standing nearby heard us and said "It's like ibuprofen, but it isn't, so it's okay. We prescribe it all the time." Trust us, we're doctors.

It took about an hour, all told, to get Quinn upstairs to his new room for the night. Kurt saw us settled and left to collect our other kids, who by all accounts had a wonderful time, didn't want to go home, and the kids they played with didn't want them to go home. It was very nice not to have to worry about them during the day.

I asked Quinn's nurse about his pain meds, whether he would have Toradol in his IV. She shook her head and said "You know, those surgeons down there aren't really used to dealing with kids this size. We don't give Toradol to babies under 6 months because it's related to ibuprofen." I would have felt vindicated, but I was too annoyed at my treatment downstairs. How dare I have a valid point. Quinn was given Tylenol instead. I felt sorry for him. My own experience with Tylenol is that it's worthless, but maybe it helped him. He seemed like he was in distress most of the afternoon. When he wasn't sleeping, he would wake up screaming. It was enough to make me swear off ever bringing him back to the hospital.

Within a very short period of time, it was obvious that the apnea monitor was too sensitive. It said he wasn't breathing frequently enough when that clearly wasn't the case. I watched him breathe and counted about 50 breaths per minute, while the machine counted 15. And that thing is loud. After about 2 hours of it's going off every few minutes, the nurse came back and said "I've had it!" and replaced it with an oximeter. If Quinn quit breathing, it would show up in his oxygen saturation. By this time, he didn't need the supplement anymore and was breathing fine on his own. But that monitor was also was too sensitive, as well as extremely loud. We ended up turning it off at about 11 pm and it never came back on. I was pretty thoroughly annoyed. The whole point in our staying over night was for a piece of malfunctioning machinery that everyone admitted was more trouble than it was worth. See if I ever make that mistake again.

We got a roommate at midnight, a baby about 2 months old. She needed an IV, and the nurses repeatedly failed, blowing each vein they tried. For an hour, we listened to this baby being tormented, before they decided to give her a rest and try again later. I slept for about an hour and a half before that happened. Then I slept for another hour before the urology resident came into our room, knocked on my head, and said "Hello! Good morning! We're here to look at Quinn!" It was 6:30 and I'd had less than 3 hours' sleep. I was too groggy to be very annoyed with this person though. As long as he got our discharge papers ready, I was beyond caring. He said they'd be ready whenever we wanted. I called Kurt at 7 and told him to come get us. It took another hour and a half, getting the other kids ready, and travel time, but we walked out of there. Quinn was in much less pain, it seemed. He had been lying on his back and kicking his legs happily that morning. You don't do that if your abs are in serious pain. So we went home, and he and I both took a nap. And I am further settled in my opinion that hospitals are no place to heal. If you must go, get out as soon as humanly possible. You'll do much better at home. And so we have. Three days later, Quinn looks pretty good today. We took his dressing off this morning. He's still bruised, but healing nicely. Let's just hope we don't have to do that again. For all our sakes.

2008-09-07T15:22:00.004-04:00

"Hi folks! It's me again!"
This is quite a complacent look, I think.
Yes, we're getting ready for church here. This may be our last hurrah for warm weather clothes.

We had a busy week, a double header of specialist appointments. First, we met with the urologist, who thought we were there to talk about hypospadias. But I was there to talk about the hernia, which changed everything. Quinn is scheduled for surgery to repair it this coming Thursday, Sep 11. I thought that was a rather ominous date to schedule anything, but maybe I'm just paranoid. There's a good chance he won't have to stay overnight, and that it might only take spinal anesthesia, not general. Let's hope for both those things. I did ask the urologist when he thought a good time to do they hypospadias surgery would be. In Quinn's case, he said at least 5 or 6 more months. So I have that much time to seek a second opinion.

Our next specialist was the pulmonologist. We aged in his waiting room, but it was worth it for how well the appointment went. We got a glowing report. It probably helped that Quinn was perfectly bright-eyed and personable for the doctor, who said he looks fantastic, his lungs sound great, he's obviously thriving, and unless something drastic happens, he doesn't need to see him again at all. Woohoo! One more thing to cross off the list. Oh, and we got to weigh Quinn too. Ten pounds even on Thursday. We're watching him grow before our very eyes. We've been very blessed in his recovery. I hope and pray that continues this week, especially for his surgery.

2008-08-31T14:09:00.003-04:00

Looking more animated by the day.

We love football season, and this was Quinn's first time watching a game. Go Trojans!
Summer is quickly coming to an end. We've traded fireflies for mosquitoes, much to our dismay. We're also adjusting to life now that four people need to use our one bathroom. And life goes on.

Quinn had a weight check this week. We wanted to check one more time after he had been exclusively breastfed for awhile. In the two weeks between checks, he gained nearly a full pound. He went from 8 lbs 7 oz to 9 lbs 6 oz. I was so excited! Exclusive breastfeeding is definitely a go. Now we just need to survive two specialist appointments this week. I find myself wishing away these early days, and wanting to fast forward a couple of years, or at least know the outcome. It's hard to be anxious. But we'll get through it. I do love the little baby stage, and my little baby is growing pretty fast. I'd better enjoy that while it lasts.

2008-08-24T21:07:00.002-04:00

Just a warning, it's hard to capture the moment at such close range. Hence, the top of Quinn's head appears to be missing. But I caught his first smile, and that's what counts. He smiled and giggled at me.

And Faith decided he needed some encouragement. He didn't seem to mind. And you can see that Faith had a relatively active week. She face-planted on the dining room floor, giving her that lovely bruise on her forehead and skinning her nose.

Another first this week: we had no appointments of any kind. That's probably the last week like that for awhile, but it was nice while it lasted.

Another first, though I'm not sure if it really counts. Quinn rolled over. He was in the co-sleeper, which doesn't have a totally level mattress, and he used it to his advantage. He rolled from his belly to his back, both directions. So I think things are going okay for him. We'll check his weight this week, but he is visibly bigger, and so I'm not worried about it. Then next week is the dreaded urologist appointment, where we'll talk about his hernia. He'll need to go back to the hospital to have it repaired, and I'm just dreading giving him back, so to speak. It seems like I just got him. Well, I'll worry about that when it comes.

2008-08-17T15:08:00.009-04:00

We have to enjoy what little summer we have here. I swear it only lasts 6 weeks, while winter lasts 5 months. You can imagine how jarring that is to someone born and raised in southern California. But it is pretty here, I'll give it that. And these two enjoy themselves.

Little brother is unimpressed.

They did switch places eventually, but as you can imagine, Faith isn't as efficient as Dorian.
A few days later, Quinn is still uninterested in his siblings' antics.
They don't seem to mind. They still manage to have a good time, especially if Faith has a "princess dress" to play with.
And drumroll please, we went to church today. And yes, I did get him further into the wrap. We were just on our way out the door and I put him in too quickly.
Dorian, and probably at least 2 cousins wore this outfit.
"Smile for the camera!" still means nothing.
Quinn had a checkup on Tuesday. He was 8 lbs 7 oz. That's a good gain from last week, but not such a good gain from the previous time we were at the doctor's office. She wants to check his weight in two weeks, but we'll have the home health nurse do that. He's now officially exclusively breastfed. I honestly wondered if it would happen, if such a thing were possible for a case like his, but he's gaining, without a doubt. I asked our pediatrician what she thought of taking Quinn to church. She said this time of year, as long as I don't put him down and avoid people in general, it should be okay. She said avoid the nursery, which isn't an issue, since our church doesn't do that for kids under 18 months. But I decided based on that to stay away from it entirely, and have Kurt continue to do the dropoffs. So we went today, and I came home after sacrament meeting, while everyone else went to their other meetings. It was nice to be there, and to sing the hymns, and wrestle my other two kids into reverence, which is a losing battle, but at least it's a familiar one. Quinn stayed in my wrap the whole time, and it seemed to go well. We might even do it again sometime. We're feeling more normal by the day.

2008-08-10T10:14:00.006-04:00

We had a good week. Notice something missing?

I can't get over how much of his face was hidden by just one plastic tube.
Now we can see that he has a dimple in one cheek (which I've yet to catch on film) and that he really does look like Faith did as a small baby.

When the home health nurse came back last Monday, she wanted to turn down the O2 to 1/64th of a liter. I told her as long as she was here, we might as well turn it off and, if need be, turn it back up. She was very hesitant, given his reaction to it the week before, but agreed to try. Well, Quinn knocked her socks off. He never dipped below 95%, and averaged 97%. We took it off then. Hooray! After she left, I packed Quinn into a sling, and the 5 of us, Quinn and myself plus Dorian, Faith, and Monty the dog, went outside to play. It was a beautiful day, and I'm sure we soaked up plenty of vitamin D. Later on, I dressed Quinn in a onesie. I had avoided clothes that needed to be pulled over his head. But now I don't have to. Haha! Life got much easier after that day, until Faith decided to potty train. But at least I had an unencumbered baby while I was helping her figure out this new life skill. The nurse came back on Thursday just to check on Quinn one more time, and he was still fine. So on we go. We also weighed him. On Monday, he hadn't gained any weight. He was still 8 lbs 1 oz. That worried me, and I fretted about it until Thursday, when he was 8 lbs 3.5 oz, which is a very good weight gain in that amount of time. He's going in spurts, I guess.

Quinn also had an evaluation for early intervention this week. Most of it was adjusted for age, so they were judging him as though he were one month old, not four. He did fine in everything except for muscle tone, and following things with his eyes. The evaluator said his movement is a bit stiff, and that he follows an object with his head more than his eyes. So he qualifies for some physical therapy, although neither problem was severe. Mostly things to watch. I gather this is part of preemie parenting, waiting anxiously for milestones to be met. Now that Quinn is essentially okay physically, the worry is shifting to his development. Worry never ends, but neither does motherhood, and the two essentially go together. But overall it's more good than worry, so I'll keep doing it.

2008-08-03T11:07:00.003-04:00

Bad blogger! Bad blogger!

It's easy to get out of the habit when it's not part of my daily routine. But then, routine goes out the window with major life upheavals, of which having a baby definitely qualifies.

So, last week. There's good news, and there's bad news. First, the good news. Quinn had a check up with our pediatrician on Tuesday. He weighed in at a nice 8 lbs 1 oz. That's a full pound heavier than he was at the last appointment two weeks earlier. So I was given the go ahead to breastfeed him full time except for the bottles that have his meds in them, which is twice a day, an ounce each. And we can use the meds until they run out, and then not refill the prescriptions. Yay! I haven't pumped in days, which has been very nice. I may still need to do that in the future, once I'm through the week's worth of milk in the freezer and there are still more meds, but for now, Quinn is getting it all from the tap.

Now, the bad news. Quinn is still on oxygen. We turned it off and watched the oximeter, and he dipped into the 83-85% range. We waited half and hour and it never came back up. So we turned it on to 16 cc/minute, where he had been on 25 cc/minute. I mean, you can't feel this much flow. You need to stick the end in a bowl of water to see bubbles and that's the only way to tell anything's coming out. But it evidently makes the difference. With that little bit, he went up to 90%, which is better, but still not good. So it was back up to 25. We'll try again tomorrow, and hopefully that will be it. It was going to be perfect. He would come off the oxygen just in time for my mom to go home and then I could take care of all three kids with Quinn totally unencumbered. As it was, I went into a bit of a panic that he would still be tied to his 40 lbs buddy and I had two other active kids in the house. It went much better than I expected, (the advantage of being pessimistic) but it was and is tough, I won't lie about that. Here's hoping for a better week and lots of improvement tomorrow.

2008-07-26T19:15:00.003-04:00

Another week with Quinn home. I think I will continue in the weekly updates. We have a busier life than I ever thought possible.

We had Quinn blessed on Sunday. We did it at our house, not at church. And we had my parents, Kurt's parents, and Kurt's brother and his family who live about an hour and a half away, and our little house was quite crowded for the event.

Here are the priesthood holders with Quinn. Kurt holding Quinn, my dad, Kurt's dad, and Kurt's brother Nate.

And we got two shots of our family of five, and both were so supremely bad that I thought they both deserved to be put up. Dorian and Faith are quite characters and I think they were showing off for their cousins. So here we are.

We've had another fairly busy week. Kurt's parents went home with his brother after Sunday's event, and my parents stayed, having driven from the west coast. Yes, it really is possible to drive the whole 3000 miles. My dad went home yesterday, after he and my mom did some projects around the house, and helped us with the kids this week. My mom will be here until next weekend.

My dad and I took Quinn downtown on Tuesday for his eye exam. I needed my dad to man the oxygen tank. The exam went well. Quinn passed with flying colors. Whew! That's amazing for as long as he's been on oxygen. One more thing to check off the list.

Wednesday the home health nurse came back and turned Quinn's oxygen down to 25 cc/minute, just the barest whiff. If all goes well, and we've little reason to think it won't, he will be done with oxygen next week. Oh, to have an unencumbered baby. We also weighed him. He was 7 lbs 10 oz, so his gain rate has slowed, but is still good. He'll go back to the pediatrician on Tuesday and we'll talk about adjusting his diet, whether we can come down on calories in his fortifier yet or not. He is nursing more, so I'm sure that accounts for the slowed rate. It's now normal, where before it was amazingly fast. We'll see.

I've also spent some frustrating time on the phone with the urologist's office trying to bump up Quinn's appointment to get his hernia looked at. They wanted a referral from his PCP, who sent it twice before we found out they had lied about their fax number. I still haven't heard back from them. A project for Monday. I always need a project.

And there we have it. Next week we'll have pictures of Quinn's face without anything attached to it. We've never seen this before. That will be something to look forward to.

2008-07-18T18:27:00.003-04:00

Whew. What a week. Quinn has been home for a full week now. We're exhausted, but we're not giving him back. We've made lots of progress in that time period.

First of all, Quinn has seen our pediatrician and has had two visits from a home health nurse. On all three occasions, he was weighed and showed that he is gaining at least an ounce per day. At discharge one week ago, he was 6 lbs 11 oz. As of today, he is 7 lbs 7 oz. He's getting to be a big boy now!

Secondly, during the nurse's visit today, we turned down the oxygen, from 100 cc/minute to 75 cc/minute. She had come on Wednesday, but there was miscommunication (surprise surprise) as to how exactly to go about the weaning process. Our pediatrician had thought the nurse would do it, but the nurse said "No way! That's your doctor's call." So, a couple of phone calls, and our pediatrician found she needed to consult with the pulmonologist to get a plan for weaning underway. That meant another visit from the nurse to monitor Quinn's oxygen saturation while we turned down the oxygen. But we have a plan now, so that's the important thing. The nurse will come back next Wednesday, and we'll see if we can turn it down to 25 cc/minute. The next step is turning it off completely. Fingers crossed. Interesting aside: While we were turning down the oxygen, the nurse asked me what my background was because I "seemed unusually comfortable with the math." What I know about pressure and flow rate is just from basic courses, and is nowhere near, say, Kurt's expertise, as a mechanical engineer, but I guess I look confident in my knowledge. Anyway, I told her I have a master's in genetics with a minor in statistics. That seemed to explain it.

And thirdly, and the one I'm most excited about, breastfeeding is going wonderfully. I was worried the first couple of days, because it always seemed to be a struggle to convince Quinn to latch on, and the whole time I was seeing that discouraging nurse telling me he was using too much energy to breastfeed and wouldn't gain well. But the last several days, it's come much easier. We nurse at every feed, topped off with some fortified milk. And obviously he's gaining tremendously. So there, nurse. Maybe he needed exercise.

Now we just need to get rid of the oxygen tank and the apnea monitor, and then we can be much more mobile in the house and in the yard. We're on our way!

2008-07-14T16:01:00.005-04:00

Just for fun, I thought I'd put these up here. I started what I didn't realize would be a tradition, but now I'm glad I did it. These are all three of my babies in the same basinet, at roughly the same ages, about one week past birth, or due date, in Quinn's case.

Things are going okay. I'm exhausted, but that's to be expected. We'll go to our pediatrician for the first time tomorrow, and take it from there.

2008-07-11T15:50:00.009-04:00

Ninety-nine. It's always been a significant number, just one less than one hundred. As a statistic, it's probably the most popular number to throw about: "Kills 99% of germs!" "99% of the time, this is what happens." and my personal favorite "99% of drivers say they are above average." It was a significant year for me too, '99. That was the year I graduated from high school, to the tune of "Tonight, we're gonna party like it's 1999!"And now it has more significance to me, and our family. Ninety-nine days ago, a very little boy was born. And now, after ninety-nine days of separation, he has joined our family at home.

At one point this afternoon, I was nursing Quinn, and Dorian came into the room. Dorian and I played a game of making funny faces, and I had flashbacks of doing something very similar with him when Faith was a nursing baby two years ago. Then Faith came in and joined us in our game. Amid the peals of laughter, Quinn nursed contentedly, and I have never been happier. It suddenly didn't matter that in the corner of the room stood an oxygen tank, resembling a small rocket about to take off. My children are all together in one place, and we are living. This is Life. It's nothing more profound than the day-to-day family interactions just like these, made all the more vivid because of Quinn's long absence. We are home.

2008-07-10T22:11:00.003-04:00

D Day minus 1.

I guess this is it. Two of us will be heading to the hospital tomorrow morning, and hoping against hope that three of us will be coming home. We left the car seat there tonight so Quinn could have his car seat test done. He is still holding steady on all of his stats. He's 6 lbs 11 oz, and growing, all of which is good. I got a rundown of what to watch for as far as his hernia, in case it gets significantly worse. I told the doctor my main motivation for not having it repaired before he comes home is that we are to the point where we need our family reunited. We need to be together. Even if Quinn needs to go back the next day and have it repaired, that our whole family will have been together in our home just once will be able to sustain us through whatever may come. She said she understood, and gave me all the horror stories, just so I'd be over prepared. She did mention staying overnight, which neither Kurt nor I wanted to do, for multiple reasons. Later, a nurse told us she didn't blame us. I'm glad someone sees the other side of the argument. Kurt and I went out tonight for what may be our last date in a very long time. A crew of people from church came over today and helped us get all the dust and dog hair out of the house, so our little chronic lung disorder baby won't have to breathe them. I hope we've checked everything off our list. We've made it and checked it twice. And all I want for Christmas is my whole family together in one place.

2008-07-09T21:47:00.002-04:00

D Day minus 2.

My mom commented to me today that she can't believe all the things I write about on a daily basis. It seems to be something new everyday. Truth is stranger than fiction, folks. I would never be able to make this stuff up.

A message was left for me yesterday to call the home health supplies place and find out when they would be at the hospital this morning. So I called and was told sometime between 9 and 11. Then just before I was about to leave for the hospital, a respiratory therapist from that company called and said he had been told Quinn would be discharged today, and found out that wasn't true, and we needed to have a different time to set up the oxygen tank when he actually did go home, and did I know when that would be? I told him Friday. He wanted to know when on Friday. I tried not to laugh when I said "Surely you've dealt with hospitals before?" He got the point and said we'd talk about it Friday morning.

I went to the hospital to met the respiratory therapist. He said again that he thought the discharge was happening today, and had rushed over, in a panic to be on time, with two monitors and a big oxygen tank. We're not entirely sure who originated that notion, nor who told them that two monitors were needed. He had brought both an apnea monitor and a pulse oxymeter, which we didn't need. Just another miscommunication. None of this suprised me of course. No matter. I got the rundown of how to use the apnea monitor, and how to put it on Quinn, and then he left, and that was it. It would have been very bulky to have both the home monitor and the hospital monitor on at the same time, so currently the home monitor is sitting next to Quinn's bed, totally useless. So that was a little bit of panic that was totally unnecessary. The good news is that learning how to put the monitor on Quinn woke him up so thoroughly that he nursed very well immediately afterward.

The neonatologist gave me the prescriptions for all Quinn's meds. And they are not a few. Most of them are dietary supplements, and then a diuretic, which is for his lung issues. She then told me she really wanted me to think about staying overnight at the hospital to get used to taking care of Quinn and the monitor and so on, because "I think it's more work than you realize and I want to make sure you're ready for it." I agreed to think about it, but I already knew I didn't like the idea. And anyway, what made her think I haven't been preparing for 3 months to have a very high needs child? Good grief. It really sounds like a hazing ritual, like I have to pass her test in order to be granted my child. I can just see people streaming through the room at all hours of the night "just to check on Quinn" which to me defeats the purpose of taking care of him myself. But because he would still be an admitted patient, they would be able to do what their policy directs them to do to him. Nevermind the fact that to me, the point would be to take care of him, and if I need to, I can ask for help, and otherwise, leave me alone. I'll have to figure out how to handle that one tomorrow.

Our afternoon nursing went well also. I had thought I'd be pushing my luck to try again and hope for success, but I got it anyway. Then I got into a long conversation with the nurse, someone I'd never met, about vaccines. It was very positive in fact, unlike so many other conversations I'd had on the topic. She said she just recently did a project for her master's about why some parents are choosing to forgo or select only some vaccines, and how the answers had been varied, and not what the media would have us believe, which is that we're mostly afraid of autism. We talked a bit about the recent Time article, which I've referred to multiple times as a remarkable work of fiction. We talked about exemptions for school, the chicken pox vaccine doing more harm than good, the yearly pertussis outbreaks despite high vaccination levels, the HPV vaccine pulling Merck out of financial distress, and lots of other good stuff. I find kindreds in the oddest places. It's good to know they are still out there.

2008-07-08T21:29:00.002-04:00

D-day minus 3.

Another day, another neonatologist. I asked today's neo what needs to happen for Quinn to be discharged. The first thing she said is that I need to be CPR certified. Check. I told her I had the class scheduled for this afternoon. That took her by surprise. Then she said it should happen by the end of the week. So I tried again. "What needs to happen in that amount of time?" After some thought, she said, "Well, how about tomorrow?" Isn't amazing when you stop and think about what you're doing and why, you find that you don't have a good reason? I agreed to tomorrow, knowing full well what "tomorrow" means in hospital-speak. And I was right. The nurse manager, standing nearby, pointed out that we need to get an apnea monitor and know how to use it. This doesn't come from the hospital. It comes from a company that puts out home health supplies. So that's happening tomorrow, and he "needs" to be on it for at least 24 hours. Then the neo looked at his records and found that he has been on his current oxygen settings since Friday. She wants him steady on those settings for a full week, which brings us to this coming Friday as Discharge Day. In that time period, he'll also have his hearing test, and car seat test, to make sure he can make it home without undo respiratory stress.

So there it is. Hopefully the plans are set in motion, and I have the checklist of what everyone needs to be doing to accomplish this by Friday. And then Quinn and I can get down to the serious business of making up for the entire lost third trimester. I think he's anxious too. I really believe it's gotten to the point where he will progress more quickly at home. He made enormous strides right after he was transferred, and I think something similar will happen once he's home with his family. He's up to 6 lbs 7 oz, and climbing. We'll hope for continued progress, in all areas.

1. I'm grateful for all the progress we've seen.
2. I'm grateful the progress gives us hope for the future.
3. I'm grateful we've gotten some balls rolling.
4. I'm grateful for the continued support we receive on all sides.
5. I'm grateful that some day I will look back on this time period.

2008-07-07T20:54:00.002-04:00

This is Quinn's new set up. A little more fresh air than before.

I've been having myself a thorough pity party the last couple of days. Last night I drove home from the hospital, heading west into a gorgeous sunset. In the middle of that sunset was the crescent moon. I started crying remembering the crescent moon nine months ago. If the pattern from my older kids had held, I would have been in labor last night, and Quinn would have been born today, on his due date. Instead, we've begun our fourth month of NICU hell. This coming Saturday will be 100 days. And if the neo I spoke today has her way, it will be that long and more.

I got there this morning and the neo said she wanted to talk to me about Quinn's hernia. She said it's gotten bigger, and if it were her child, she'd want it repaired before he was discharged. And so she had been thinking that if we wanted to do that, he would get transferred back to the huge hospital, we could get his next eye exam out of the way, and if the urologist does the surgery, he could get started on the hypospadias reconstruction, and that this might happen next week, and he could then be discharged. That was a bit overwhelming that she had forged ahead and formed all these plans. I told her I didn't want Quinn to be transferred back, and I didn't want Dr. The-foreskin-is-redundant-tissue to do anything with the hypospadias. Okay, I didn't describe him that way out loud, but I did tell her I wanted a second, and possibly a third opinion before we do that part of it and that I'd talk it over with Kurt and we'd get back to her.

Then I got down to the business of feeding Quinn. This has not gone well the last few days, and his nurse today was a major hindrance. After about 20 minutes of my trying to talk him into nursing, she brought me his bottle, which was cold by then, and he didn't want it. I put it in warm water, and continued trying, all the while, she is hovering over us, annoyed that I thought his bottle was too cold. I finally gave it to him, and then he had to have his meds given straight, when they are usually mixed with some milk. Quinn didn't like them straight and needed more milk to dilute them. By this point, it's been well over an hour since he "should" have begun feeding (though never mind the fact that part of that time was taken up by my conversation with the doctor) and both the nurse and the doctor told me that his schedule is getting thrown off. I told them to shift it if I've truly screwed it up that badly. Then they said that he is using too much energy to try to breastfeed. I asked if he ever wakes up and says he's hungry. The nurse said "Sometimes when I take his vitals, he'll wake up and is willing to eat." I said that's not the same thing. Has he ever, of his own volition, awakened and rooted around and made signs that he is hungry, or has he been told his entire life when it's time to eat? After some hemming and hawing, they said that as it gets time for him to go home, they will go more by his cues. Translation: no, he's never determined when he eats or sleeps. This is a problem to me, but evidently not to them.

I went to have lunch and came back for his next feed. The nurse didn't want me to try breastfeeding again, because we had just done that. But I tried anyway. After less than five minutes, she came back behind the privacy screen and stood there saying she would only give me about five minutes more before Quinn got his bottle. I told her if I kept giving up, then it would never work. "I know, but he's using up all his energy to try breastfeeding and trying back to back feedings is going to be hard on him." She then hovered over me for that entire five minutes. Nothing like performing under pressure. So of course that didn't work. Then she handed me the bottle and rolled the screen away, effectively ending any other attempt I might have made. I would have like the screen there even if we were bottle feeding, just to give us some semblance of privacy. But instead, I got to watch her go pick up a crying baby, who then spit up on her shirt. She got rather upset with him. "You little stinker! Thanks a lot! Look what you did! And all I've ever done is take care of you!" I bit my tongue, but maybe I should have said what was on my mind, which was I couldn't wait for her to not be a part of Quinn's life anymore. Instead, I sat there in tears, thinking how desperately I wanted Quinn at home instead of in this toxic environment. After he was done eating, I sat there and held him, still skin-to-skin from the breastfeeding, and I admit that it wasn't just so I could have more time with him. Part of me was daring that nurse to tell me our time was up and that I needed to put him back. She left us alone, though, still preoccupied insulting the other baby. I left about an hour later, determined that tomorrow I would go in with a pen and a notebook, corner a doctor and say "Give me a check list of what needs to happen to get Quinn home." This has got to stop.

2008-07-05T22:19:00.004-04:00

I put on my favorite pair of jeans last night, the ones I was so anxious to fit into again after my first pregnancy. I wish they didn't fit me now.

A neonatologist talked to me briefly today about what still needs to happen for Quinn to come home. This is a different doctor than the one who said he might go home without oxygen, so slightly different take on things. This doctor said we need to get CPR certified, and Quinn needs to have an apnea monitor to go home with, not so much for apnea, as to monitor his oxygen saturation. The doctor said all this would probably happen within a week. Of course, the other doctor said the same thing, but several days ago. The week was just shifted. As I've already mentioned, while it would be nice if Quinn came home unencumbered, I'll take what I can get in order to get started with the new normal of my life. And Quinn really is trying, but we're still asking super human things of him. A nurse told me the other day that Quinn has Wimpy White Male Syndrome. She said in her experience, white male preemies by and large need more support than any other preemie they see. While she was telling me this, she was feeding another baby, a girl barely weighing 4 lbs who was going home that day. She said when they get a baby like the one she held, they get excited knowing how well she'll do. She told me that baby's mother was Hispanic and her father was black. I responded that what she was describing was hybrid vigor, and not necessarily just being non-white. She looked confused, which sort of surprised me. I thought everyone knew what hybrid vigor was, but maybe that's just my bias from having studied it so thoroughly in school. I knew she was a dog person, and pointed out how much stronger and healthier mutts are than purebreds. Then she made the connection. Hybrid vigor applies to every organism that reproduces sexually. And it's evidently too bad that Kurt and I are so similar. Our kids got some shallow gene pools to pull from. Maybe I'll encourage them to think about outcrossing when the time comes.

2008-07-04T18:29:00.002-04:00

You rush a miracle man, you get rotten miracles.
-Miracle Max, The Princess Bride

It was while I was trying to nurse Quinn the second time today that I discovered the truth of the above. The first feeding had gone about as well as any of the other feedings we'd had all week. Then tonight, I decided to let it play out, no matter how long it took. The feed started at 4:30. At about 4:50, the nurse came over and said "We're going to have to start his bottle in a few minutes, because, you know, it's almost 5." I looked at her and said "Babies don't do schedules." She left us alone, and five minutes later, Quinn latched on and went to work for the next 20 minutes. I wonder if he had been getting some nipple confusion. It didn't seem like a coincidence that Sunday was the last good feed we'd had and that was also the first day he had all bottle feeds and no tube feeds. This restores my confidence that we will have a good breastfeeding relationship. We just need to get away from the hospital to do it.

In other miracles, Quinn is three months old today, and 6 lbs even. He had gone back up on his oxygen when I was there this morning, but by afternoon was back down to 1/13th of a liter. Just two more notches before it gets turned off completely. We're ready for him. I got my new newborn-sized cloth diapers yesterday. They are pretty tiny compared to the infant and toddler sizes I have, but I'm sure they will still drown Quinn. He has plenty of clothes, we've got a place for him to sleep, Grandma's here, we just need Quinn himself to complete the picture. Speaking of pictures, yes, I still need to download the camera and get those updated. That's a miracle for another day.

2008-07-03T22:47:00.002-04:00

Not very long ago, we were prepared to bring Quinn home in any condition in which he could reasonably leave the hospital. This basically meant supplemental oxygen. We were told he needed to be on 1 liter/minute flow at the most. Then just a few days ago, the doctor told me she wanted him to be on half a liter to go home. Today she told me she thinks he can be completely off of it before he's discharged. I'm torn. As great as it sounds to have Quinn home completely unencumbered by extraneous tubes and wires, I'd also like to get him home sooner. He's currently on 1/13th of a liter, half what he was yesterday. He's also gaining very well, up to 5 lbs 14 oz. Both of those are good enough to fit the criteria of coming home. But his doctor seems to think that within the next week he will be off oxygen completely and then he can come home. I hope that's right, and it doesn't drag on interminably. It's been long enough, for crying out loud. Quinn will be 3 months old tomorrow.

As excited as I am about all the respiratory progress Quinn has made since transferring, I'm continually worried about how poorly nursing has gone since then. It's day after day of discouragement, which is another reason I want to get him home. The nurses discourage me from continuing to try to get him to nurse because it throws off his sacrosanct schedule. I've already expressed my opinion on schedules for babies. But I'm almost willing to play the game now if it means getting him home that much sooner. I hate giving in, but on the other hand, I hate contention as well. I'm still feeling my way with that one, and might be for a very long time.

1. I'm grateful for the holiday weekend.
2. I'm grateful to live in the U.S.
3. I'm grateful for my family.
4. I'm grateful for all I've learned on this and other journeys.
5. I'm grateful I can usually see the humor in things.

2008-07-02T21:12:00.002-04:00

Today is Dorian's birthday. He is four years old. We thought that maybe he and Quinn would share a birthday, or at least have them very close, since my due date is next Monday. Well, we all know how that one went. But I had a busier day than usual trying to make it a good birthday. In between feeds at the hospital, I ran home and made a cake, and then frosted it when I came home the second time, while Kurt wrapped the presents I'd bought. Then we went out to have chicken nuggets, Dorian's favorite, for dinner, while my bread was rising. Throw in a load of laundry and pumping every three hours, and I think I'm going to bed early tonight. But Dorian seemed to enjoy everything we did. We'll have more celebrations this weekend when his cousins come to visit.

All the running around may have contributed to the continued problem of Quinn not nursing well. I hate to speculate what the source is, but we have not had a good time with nursing since Sunday night when I thought we were well on our way to a good breastfeeding relationship. I could not wake him up for anything. And even when I did, he wasn't all that interested in nursing. And the super frustrating thing is I get there and the nurses say "Oh, you should have seen it! He was awake and looking at his mobile, and looking around. He was so cute!" And I'm thinking: great, I'm glad he can be awake and all, but why do I need to rouse him out of a deep sleep in order to feed him? Why not feed him when he is awake of his own accord?

I was also told by one nurse today that it would be nice if Quinn could get some fresh breastmilk now and then. The milk I bring is frozen solid, because I have a week's worth in the freezer, and I bring the oldest. She said she understood that, but Quinn would benefit from getting milk that's never been frozen. Pardon me while I bang my head against the wall. Isn't that one of the reasons I'm trying to breastfeed him??? How much fresher can you get?

I'd also like to address something somewhat related. Often enough, I see or hear the comment that I'm strong, and the person giving the compliment would never be able to do what I'm doing. While I sincerely appreciate the encouragement, as Heaven knows I need it, to the latter half, I'd like to humbly and sweetly say Bull Crap. I never thought I could do this either. But when you find yourself in a situation such as this, your choices become a) find a way to cope with it, or b) kill yourself. That's not an exaggeration. You can't change what happened. You can only choose what to do about it. And that is entirely up to you. But you do not know how strong you are until you are presented with something that will test you. And tested I am. Whether I pass in the end is still to be determined, as it is for all of us. I wouldn't wish what happened to us on my worst enemy, whoever that is. But I do think that if it happens to you, you are capable of overcoming it.

Off my soap box for tonight.

1. I'm grateful for all of my children and for the opportunity to be their mother.
2. I'm grateful my mother-in-law is here to help our family.
3. I'm grateful we are closer to reuniting our family.
4. I'm grateful I've been able to watch all the milestones my children have made.
5. I'm grateful for eternal families.

2008-07-01T21:57:00.003-04:00

I'm convinced that "exact science" is a total misnomer. Medicine isn't an exact science because exact science does not, in fact, exist. It comes down to differences of opinion. When we were told that Quinn needed to be on 1 liter/minute flow to go home, that was one person's opinion. Now we're being told .5 liters/minute to go home, and that's another opinion. But what it amounts to is that Quinn is being challenged to breathe with a much lower flow rate than he has had previously. The neo sat down with me today and said "Now I don't want you to get upset when you see the oxygen level." There is no oxygen blender that we can bring home. It's all or nothing. But, as was explained to us previously, the lower flow rate allows more room air to be inhaled, effectively diluting it. So although 100% oxygen is flowing through the tubes, that's not what's ending up in Quinn's lungs. Kurt could do the calculation for exactly what it is, but it's somewhere between 21%, atmospheric oxygen, and 100%. That doesn't exactly narrow it down much, does it? We'll just hope this experiment goes well. As of this afternoon, Quinn was on .2 liter/minute flow. That seemed like a big jump to me, but the neo seemed to think he could do it.

We had more success nursing today, but still not what we've had. I don't know what happened, but something changed, and now Quinn doesn't want to take me, at least not without a fight. But the fight doesn't seem to be affecting his growth. He was 5 lbs 11 oz today. He has steadily gained about 1 ounce/day for about a week now, which is a very good growth rate. I got bold and asked the neo when she thought we might be bringing him home. She said for babies born at 26 weeks or so, they are happy if they go home by 44 weeks. She didn't think it would take that long, but she couldn't say when exactly. Quinn was 39 weeks on Monday. But he's gaining, he's on a low enough flow to go home, and they pulled out his gastric tube today, because it had been 36 hours since he had needed it. Here's hoping. I can't believe it's July already. I was supposed to be thinking about giving birth any day now. No, I'm not going down that road of thought again. It does no good to dwell on it.

2008-06-30T21:39:00.002-04:00

I hate getting my hopes up.

We had a disappointing day with nursing. Both times I was there, Quinn wouldn't latch on. He had done so well the last few days that I just expected it to continue in that vein. I tried for 30 minutes both times and he wouldn't do it. The first time I blamed it on the fact that there were people streaming past us to get to a wall of consent forms and protocols that were right behind his bed. I asked if he could be moved across the room so that wouldn't happen again. Well, he moved and it didn't make a difference. He just wouldn't do it. He was awake, alert, and willing to interact, but not nurse. This is one reason I'm anxious to get him home. They have a rigid feeding schedule for him, which makes their job easier, but babies don't do schedules. They can do routines, but I don't believe in schedules for them. So waking him up and expecting him to perform on cue like that is slightly unrealistic in my not-so-humble opinion. And even times when we've had good nursing sessions, he took up to 10 minutes to get around to it. It just isn't instantaneous.

I spoke with a neonatologist today. It's amazing that with the smaller hospital, we see a doctor everyday. Before, we were lucky to run across a nurse practitioner, much less a doctor. Anyway, she said she wants Quinn to be down to half a liter of flow before going home. And I don't see that happening soon. His oxygen was up to 40% still while I was there. So who knows when he'll get there. She said he is growing well though. I can't remember the metric measurement, but it translates to 5 lbs 10 oz, so up an ounce from yesterday, even though he's taking all his feeds by mouth. That's good news.

I told the neo about the random girl who got to hear the reports on Saturday night, and she said she'd talk to the nurse manager about it. I doubt I'll hear anything more about it, but the more I thought about it, the more disturbed I was and I wanted to tell someone about it. Oh, the levels of hospital beaureacracy that I never wanted to know about.

2008-06-29T21:43:00.003-04:00

Grandma came into town today. Yay Grandma! Kurt's mom flew in this afternoon. Now we're ready for Operation Get Quinn Home. And it may just happen soon. I hesitate to speculate just when, but as of today, he is doing everything he needs to be discharged. They just started giving him all his feeds by mouth. He still has the nasal gastric tube in place in case he needs it, but if all goes well, that will be removed, and then he'll have one less attachment. And he's been out of heat for nearly a week and doing well with that, and he been on 1 liter/minute of flow for nearly 2 days now, and that's the maximum flow for going home. His due date is one week from tomorrow. It's looking promising.

Ibreastfed Quinn today and we weighed him before and after to see how much he took. It looks like he took about two-thirds of his regular feed, and might have taken more, but I was anxious to see the difference and plunked him on the scale. So he's doing pretty well for himself. I'm guardedly hopeful for this week.

2008-06-28T22:50:00.002-04:00

As I mentioned last night, one reason I don't do photos very often is I hate fighting with Kurt's computer. Mine seems so much more tractable for some reason. Here I thought I had the process down, but I fail yet again. I'm on Kurt's computer right now and can't get these photos where I want them. The main reason they are here instead of mine is we want them all in the same place and Kurt's has a bigger hard drive. But it's quite obnoxious, and I'm done trying to coax it into cooperation for the night. So I apologize, but no pictures tonight.

I went to see Quinn twice today. We went all together in the mid afternoon, and Dorian and Faith enjoyed the new surroundings. This is the same hospital Faith was born in, so they both have been there before, not that they consciously remember, but they did seem at home. Quinn had had two bottles in a row, and I couldn't wake him up to nurse at all. So I pumped and we went home. I went back for an evening feed and this time he nursed for 20 minutes. He's up to 2530 g, 5 lbs 9 oz. His oxygen was up to 40% when we first got there and I was trying hard not to be worried that he had been pushed too hard yesterday with his pressure being lowered so much. I wondered if that's why he was so hard to wake up. I asked to speak to the neonatologist. He explained that even though the oxygen percentage is up, it isn't really 40% because with the lower flow, Quinn is inhaling a higher percentage of room air than he was on 2 or 3 liters/minute flow. He said he could do the calculations if we wanted, but the actual percentage was probably closer to 30%, which is what he had been getting for several weeks now. Kurt could probably do the math. He's good at fluid mechanics. Anyway, the explanation made me feel a bit better.

There was one other thing that disturbed me today. When I went back in the evening, there was a shift change going on and I couldn't enter the room because they would be talking about all the patients. This wasn't a scheduled shift change. Those are supposed to happen early morning, mid-afternoon, and late at night, so it wasn't my fault for being there at the wrong time. But I was told it would only be 10 minutes. After 20 minutes of pacing, I was allowed in. That's when I figured out that of the three people in this meeting, only two were nurses. The other was the teenage granddaughter of one of the nurses, so not a hospital employee, and not associated with any of the babies. I didn't say anything, though I probably should have, but why should she get to be there while reports are given on all the babies when she has no affiliation with them whatsoever? Is this a violation of HIPAA or am I overreacting? Maybe I should just cool my hormones and go to bed. That helps just about everything. And tomorrow I'll get Kurt to whip his computer into shape.

2008-06-27T22:27:00.003-04:00

Will wonders never cease. I had been so sure that Quinn's feeding ability would outstrip his breathing in terms of what he needed to do going home that I was totally shocked when we went to see him today and he was on a regular nasal cannula on 1 liter/minute flow, enough to go home on. He still gets about every third feed through his tube. I'm actually a little worried that he's already down that low on flow pressure. I thought they would give him a few days to acclimate to the new place before trying new things. I hope this doesn't set him up to crash and burn. But I'm also hoping that he doesn't look back. Maybe this really will be it for him. *fingers crossed*

We had a good nursing session today. He latched right on, although it took him a few minutes of looking around and grunting before he set to work. But he's getting the hang of it. He weighs 2469 g, 5 lbs 7 oz. He's looking just like a regular baby now. And yes, I did take pictures today. But uploading them involves fighting with Kurt's computer. Sorry, not in the mood. But there are plenty more where they came from. Tomorrow we'll take the other kids, because it's only 15 minutes away! Someday soon, we'll have all three kids in the same place all the time. The impossible dream.

1. I'm grateful for progress.
2. I'm grateful for weekends.
3. I'm grateful for summer.
4. I'm grateful Quinn and I can rebuild our relationship.
5. I'm grateful for a more hopeful future than 3 months ago.

2008-06-26T21:59:00.002-04:00

Beware of flying pigs. Yes, it happened. Quinn got transferred this morning. They were a bit late, but that it happened at all is more than I expected. I'm no conspiracy theorist, despite the fact that I was an X-phile. But I was beginning to wonder if the dragging out of this process was some sort of hazing for us. I'm probably just paranoid. And now I'm just hoping it was the right decision. The good things are it took me exactly 15 minutes to drive there, and it's a much smaller nursery, with only one other baby in it currently. But I am a little bit worried. When I got there and talked to the nurse to get the rundown of the new place, she said they like to have parents come around feeding times, and let the babies "rest" in between. I said that wasn't what I was used to, that I had been able to hold Quinn for most of the time between feeds, and kangaroo care. She said that's just what they like to do, and that it would be especially important today, because he'd had a busy day being transferred and all. He did look tired, but he also looked distressed. He cried today. I've rarely heard him cry. And he is now out of heat, no longer in an isolette. So for today at least, I could agree that he shouldn't be stressed any more than he was. But I might have to pry a little bit and find out if they really and truly think that kangaroo care is too much stimulation for Quinn. That seems ridiculous to me. There was a sign on the wall near Quinn's bed that read "Minimal Stimulation." That was a bit ominous. It's hard to break in a new set of people. But I don't want to lose hope yet. We have things to look forward to, like Quinn's due date in about 10 days. Hardly seems possible.

2008-06-25T21:18:00.002-04:00

I love breastfeeding. Quinn is getting better all the time at it. He nursed well and solidly today and seems to have totally figured out the whole suck-swallow-breathe routine. He's now taking half his feeds by mouth, and I'm sure by the time his oxygen needs are within the range of going home, he will be taking all of them by mouth. He still needs the extra calories from the fortified milk though. Even with 10 extra calories per ounce every feed, he didn't gain anything yesterday and is still at 2400 g. But then I have to think that that is more than triple his birth weight and he's not yet three months old. So many things are going well.

There's something else that I hesitate to mention, out of a semi-superstitious belief that putting it in writing will make it less likely to happen, but here goes. I talked to the doctor who works at two hospitals today. First of all he went over the results from the cardiologist's exam. Quinn does not have pulmonary hypertension, which is good. He does have an open duct between his atria, which is common in utero and even up to the first year of life. It isn't affecting his oxygen needs, and will most likely close on it's own. Nothing needs to be done about it unless it doesn't close, and we'll worry about then in a year. And then the doctor said he understood I had some concerns about transferring after the fiasco last week, and were we still interested in doing that. They have room if we do. I told him I'd call Kurt and talk about it, but in the mean time, I asked about what might still need to happen. I pointed out that in the last week, since the time we were given the okay to transfer, Quinn has seen a pulmonologist and a cardiologist and are there any more specialists that might come out of the woodwork? He said no, so I guess I'll believe him. I talked to Kurt, who was all for transferring. I passed that along, and the transfer was then set up for tomorrow morning between 8 and 8:30. I'll believe it when I see it, but everyone else seemed to think it would finally be happening. Several nurses said goodbye and good luck to me today. We'll need the luck, transfer or no transfer.

1. I'm grateful I can nourish and nurture my baby.
2. I'm grateful our relationship is improving.
3. I'm grateful for beautiful days.
4. I'm grateful for baby steps on the way home.
5. I'm grateful for all I've learned about children, mine in particular.

2008-06-24T21:31:00.002-04:00

Just another day downtown. I wonder how many more we have. No, scratch that. I don't wonder. It just makes time go more slowly.

Quinn is currently 2400 g, about 5 lbs 5 oz. He's taking more and more feeds by mouth, and has come down slightly on oxygen. He had been at a rate of 3 liters/minute. Now he's down to 2.5. He can't be more than 1 to go home. He's also at about 27%, after being at 30% for what seemed like forever. We're making some strides then. Kurt and I were both with him today, and we got to watch a video on infant CPR. Horrible thought, but practical nonetheless.

We ran into a neonatologist who said a cardiologist is going to look at Quinn and see if he has pulmonary hypertension. This might give us a better idea how much longer he will need oxygen support. The neonatologist said that should have happened yesterday, but the cardiologist didn't get the message. Surprise surprise. But he would be there today. We left at 4, and he still hadn't come. Surprise, surprise. Still no word on a transfer, but that's sort of a moot point by now. We'll just concentrate on what it will take to get Quinn home and put our family back together again. We are creeping up on his due date after all. Here's hoping.

1. I'm grateful Kurt and I could spend some time together today.
2. I'm grateful I've done so much research on important parenting issues.
3. I'm grateful for every paradigm shift I've experienced in my life.
4. I'm grateful for the experiences that led to these new perspectives.
5. I'm grateful I was raised to have self confidence.

2008-06-23T20:47:00.006-04:00

These are from Saturday. More father/son bonding.

And the obligatory big brother and sister shot.

And this one's from tonight. I don't think Quinn likes close-ups.

After 81 days, you'd think I would have seen it before, but oddly enough today was my first time. I noticed lots of people in scrubs with machinery streaming into one of the nurseries, which was then roped off. Later, when I came out again, there were about 10 people gathered around sobbing. A baby had died. As I said, I'm sure it's happened before now, but today was the first time I was there for it. The realities of life in intensive care. It made me even more grateful for the incredible progress Quinn has made.

And progress it is. I can't remember the exact weight, but it translates to 5 lbs 2 oz. He is still on the same respiratory settings, but he's doing well with them. I spoke with a nurse practitioner today who thought he could come out of the heated isolette within the next couple of days and into a crib. We're making steps. He's also taking more and more feeds by mouth, which is also a good sign. I was there for two feeds today. The first one he wasn't all that interested and after getting tired he got tube fed. But the second time he worked for about 15 minutes. And my milk supply is now back up to the point where it will sustain him. Whew. I was getting worried there for awhile.

Speaking of milk, I heard something interesting in the pump room tonight. There are three pumps with curtains dividing them. A mother at one of the other pumps was talking, or rather venting, to one of her friends about the lack of communication they have experienced among the NICU staff, that she feels like she need to check on everything because not everyone is on the same page and worries for her baby who has suffered from the variability. She feels like she has become a different, angrier person for the experience. When we were both done, I mentioned to her that I couldn't help but overhear her conversation, and that I felt the same way. Comrades in arms. We both agreed we feared for the babies whose parents weren't as vocal. But at least I know I'm not alone, nor am I necessarily the most feared mother there. And most importantly, I'm not nuts. There really is some lack of communication going on and some parents who feel totally helpless to fix the problem for their babies' well-being. Sad but true. Oh, I hope Quinn comes home soon. At this point, I'm not counting on a transfer. I am not all that excited about having him in a place that can't figure out that it's staffing changes will be a problem day to day, so maybe he's better off where he is. And the saga continues.

1. I'm grateful everyday brings us closer to being a whole family.
2. I'm grateful to have people take the pressure off with my older kids so I can spend time with Quinn.
3. I'm grateful for Quinn's continued improvement.
4. I'm grateful for finding friends and allies.
5. I'm grateful for all the encouragement we get.

2008-06-22T21:23:00.002-04:00

I have allies. I'm not sure whether that's truly comforting or not. I went to see Quinn this evening and one of his primary nurses was there and told me she was angry for me that he didn't get transferred after everything was set for that to happen. We talked about how ridiculous it is that they knew beforehand that they were overwhelmed with the merger and shouldn't have said yes if that was a problem. I mentioned the doctor had told me he wouldn't normally have told parents the whole story, but knew that I needed to hear it, and that I wasn't sure it was a compliment or not. She said it depends on the parents. She always gives as much information as she has, at least until she knows the parents. She said there are some parents who get totally overwhelmed by the amount of stuff there is to know, and would rather most if not all decisions were totally handled by hospital staff. This is mind boggling to me, but evidently that's just my personality, and I need to make allowances for other ways of parenting. I'm not going to hold out hope that the transfer might still happen. At this point I'm wondering if I really want Quinn in a facility as poorly run at the other hospital seems to be. Maybe this is a blessing in disguise. Whatever the case, I'm starting a new regime tomorrow. I need to spend more time with Quinn. He is taking more and more of his feeds by mouth and I want to be involved in that. So I'll be spending all afternoon and most of the evening there, instead of the token visit I have been making. I feel like I've been choosing my older children over Quinn, and it's a heart-wrenching decision to make. All three of them need me, but I can't have them all in the same place all the time, at least not yet. We're getting there, but there are many more obstacles to negotiate.

Quinn is just over 5 lbs now. Hardly seems possible. I did take some pictures yesterday, but I'll have to defer uploading them until tomorrow. He's a lot more interactive now. I spent a lot of time talking to him today. It's fun to watch him respond now. He hasn't made any recent improvements on his oxygen needs, but he's still growing and getting better with feeds. I'll take what I can get.

2008-06-20T22:37:00.002-04:00

Just a quickie tonight. Believe it or not, we still enjoy our Friday nights.

Quinn is 2240 g, 4 lbs 15 oz. He might just hit 5 lbs tomorrow. That seems like an enormous milestone to me. I spent several hours with him today, in my new attempt to get to know him all over again, as well as make sure dumb things like wasting my milk don't happen again. The first feed we attempted to nurse didn't go so well. Quinn was sleepy and didn't get much. But the second one went very well. Judging by the amount I got pumping afterward, I think he got about one fourth of his normal feed from me. So some things are improving. Other things not so much. He's back up on his oxygen pressure. Last night, he showed signs of getting very tired. He had been on this pressure setting for nearly one week, 2 liters/ minute. But he's back up to 3. I'm hoping this will be like the day he went back on the ventilator, that he just needs a little break and he'll come back stronger than ever. And so far so good. He looked really good while I was there.

I think people are sort of walking on eggshells around me. One nurse told me that if Quinn transferred, I'd have to get used to a whole new set of frustrations. and at least where he is, I'm used to the people and the ways they drive me nuts. Alright, thanks, I'll keep that in mind.

I notice a difference when I'm lax in my gratitude. So I'll try again.

1. I'm grateful for Fridays, and weekends in general.
2. I'm grateful for the support we get through this enormous trial.
3. I'm grateful for the rainbow I saw on my drive home tonight.
4. I'm grateful for the time I can spend with Quinn.
5. I'm grateful for the hope that pulls us forward.

2008-06-19T20:50:00.003-04:00

Pop quiz.
When told that multiple people at two hospitals have made arrangements for "tomorrow afternoon" for a transfer, you
A) take it at face value and plan accordingly.
B) hesitate to believe, but plan on it anyway, just in case.
C) put no stock in it, remembering past statements on the subject which came to nothing.

I grow more cynical daily. And that's saying something for me. I was already the most cynical person I know.

I got a call this morning from a doctor who works at both hospitals. As soon as he said the word "unfortunately," I lost all faith. The other hospital just got an influx of new staff because of a merger, and with everyone finding their place there and being newly oriented, putting another baby in their care was beyond them, so they declared. This was after they said yesterday that the would come and pick up Quinn today. They knew yesterday that there were new people and that they were overwhelmed by that change. But they waited until today to decide they had more than they could handle already. I was unimpressed to say the least. This doctor apologized, saying he knew we wanted Quinn closer to home. I told him what I told the nurse practitioner yesterday, that getting him closer was secondary to having a smaller place with fewer people so that I didn't have to ferret out the real story, I could get it directly from the few people involved. He said when I came in this evening, he would meet with me and we would talk about ways to alleviate my concerns.

I got there this evening, and went to Quinn first. We had an awesome nursing session tonight. The other times he's been successful, he hung out on me for a little while before sucking. Tonight, he had no hesitation. He ate for about 15 minutes. We're making strides.

Unfortunately, my good mood with that was short lived. I had yet another example of too many people involved in Quinn's care. At one point, I looked over on a low shelf, and saw four bottles of breastmilk just sitting there. I asked the nurse about them, and she hadn't seen them at all, and had been there for nearly 4 hours. She went and called the nurse who had been there before her who said she's pulled them out of the freezer to thaw in the early afternoon and forgotten about them. And now they had sat out too long and were no good. I can ill afford to have my milk wasted like that. That was roughly 200 ml of milk down the tubes.

I met with the doctor after Quinn was settled into his tube feed. He apologized again, and said that he would normally just tell a parent that the transfer wouldn't be able to happen that day, but with me, he got the impression I would need the full story. So I got the full story. Lucky me. I'm not sure whether that's a compliment or not. I told him of my concerns that we get garbled messages through many different people instead of hearing directly with the people who are making decisions. In particular, I pointed out he urologist. Kurt met with his resident about six weeks ago. But neither of us has either met or spoken with the urologist himself. That surprised this doctor, who said he would make sure he called us, so we could get everything straight from him, instead of, say, having someone tell us that Quinn needs a test, when in fact the urologist didn't say that, and didn't plan to do it until Quinn was much older. These are the sorts of details that need to be ironed out.

We also talked about Quinn himself. He said overall, all things considered, Quinn is doing well and is having a sort of typical course for a preemie of his age and size. The two main concerns are of course his lungs, getting him weaned down off breathing support, and his nutrition. Quinn has rickets, and his nutritional intake needs to be monitored carefully. The doctor stressed how important it is to make sure Quinn is growing, and typically when preemies go home, they get a certain number of feeds of either formula or fortified milk, and beyond that is all breastfeeding. And the goal is to get him growing well. I asked if parents go home with a scale to monitor growth, and he said no, because the pediatrician should be the one to do that. The implication I got was that if parents had a scale, they would make too many decisions regarding how their babies are fed. I'm not quite sure how I feel about that. I don't think I'll spend much energy analyzing it though. I need my energy to stay awake on the drives downtown, which will continue for the foreseeable future. I don't even want to speculate anymore when they will end. I've been burned too many times doing that. I'm done.

2008-06-18T20:49:00.003-04:00

This is our dog, Monty. Monty is a beagle. Beagles are scent hounds, bred to have a more sensitive sense of smell than dogs already have. Normally, I consider this aspect about Monty to be a nuisance, as his nose often leads him into trouble. But today I would have welcomed his help at the hospital in sniffing out any last details that might hinder Quinn's transfer. Yes, the hidden details strike again. Quinn is still downtown.

The doctor told me yesterday that Quinn would be transferred today, and that I would hear from them sometime during the day when it would happen so that I could meet them there. At 1 p.m. I still hadn't heard anything and called to ask about it. I spoke with a nurse practitioner who said "oh yes, Quinn saw the pulmonologist, got a chest x-ray, and we've been putting together his files to send over. Everything is set for tomorrow afternoon." I tried to process how today became tomorrow. When I told her I had thought it would be today, she asked who said that, and then declared that doctor to be too optimistic. She said Quinn really needed to see the pulmonologist before he went and the needed to put his files together, and that took time, because his history wasn't simple. I resisted the urge to point out to her that we have been talking about transferring Quinn for MORE THAN A MONTH. This was not a surprise. We knew it was possible that his eye exam would go well and allow the transfer to occur. Why wasn't the appointment with the pulmonologist scheduled before today? Why wasn't his file put together before the last minute? Why must I find out about these details after the fact? That was the whole point in having that meeting last week, to ferret out these sorts of things. I don't know the right questions to ask, I guess. Honestly, I'm not so much bothered that it didn't happen today. I am bothered that I was told it would happen today and it didn't. I would not have minded had the doctor said "It will take a day to iron out some things and we should be ready to go by Thursday." That to me is far more reasonable than what happened. I did also tell the nurse practitioner that this sort of thing is exactly the reason I want Quinn transferred, that I don't know whom to believe because I hear different things from different people, and I want fewer people involved in Quinn's care. She didn't take that well, but I've had it. Beaureacracy is killing any good they are doing. I should be used to this by now. I now know not to take anyone at their word.

Top it off, and we had a disappointing nursing session tonight. Quinn was beyond lethargic. He barely opened his eyes, and wouldn't suckle at all. I'm hoping he's just tired because he seems to have had a huge growth spurt. He's up to 2160 g, 4 lbs 12 oz. That's a lot of growing. And he'll keep doing that I hope. And tomorrow may be a better day for transfer anyway. Today it rained. Tomorrow, there will be sun. Here's hoping.

2008-06-17T20:57:00.002-04:00

The fireflies are back. I love it when the forest sparkles. It's among the things I plan to show Quinn when he comes home, which may be soon. He has a big day ahead of him tomorrow. As long as the smaller hospital has room for him, he will be transferred. Woohoo! He'll only be 15 minutes away, and no 10 minute walk from the parking garage to his bedside. So obviously, his eye exam went fairly well today. His eyes are still immature, but they have improved enough from the last exam that the ophthalmologist doesn't need to see him for another month. And everyone seems to think that he will be home by then, and that can be handled on an outpatient basis. So it looks like Quinn will actually get to see the light of day tomorrow. That will be a first. A first among firsts.

In other news, we had a pretty good nursing session tonight. This time I could tell he was swallowing and getting something. But he tired out and got the rest of his feed by tube. I'll be able to spend much more time with him after he transfers, and we'll get this figured out. He gained 35 g, so he's up to 2085 g, 4 lbs 9 oz. Still tiny, but not nearly as tiny as he once was. We're looking forward to tomorrow!

1. I'm grateful to have so much improvement for our whole family.
2. I'm grateful everything has worked together for this to happen.
3. I'm grateful Quinn is on his way home.
4. I'm grateful Quinn is gaining momentum in his improvement.
5. I'm grateful that I appreciate just holding my baby so much more.

2008-06-16T20:59:00.004-04:00

I had a hard time finding Quinn in his new nursery. It's a lot bigger with more babies in it. I walked in and there were four babies in one squared off area of the room, and then on the other side of a partition were another square of four babies. None of them were Quinn. I had to have him pointed out to me. He was off in the corner by himself. It's not nearly as scenic as his last spot which was near a window. But after 72 days in the same spot, I would think anything would be an improvement. He had a new nurse who showed me how to take his temperature with their instant thermometer. Then she left me to him, and conveniently left his daily chart, where she had been recording his vital signs, on top of his isolette. Evidently she isn't as concerned about the "new" hospital rule of no parents reading the chart as other nurses are. So I read it thoroughly and then got Quinn out so we could nurse. He wasn't nearly as interested tonight as he had been yesterday, so after 10 minutes of trying to get him to do anything, he got his feed through his tube. He's up to 41 ml per feed. And they bumped up the calories again, apparently not satisfied with how he was gaining. He didn't gain anything yesterday, so that may have been the last straw. There is so much added to the milk that it looks a bit sludgy. But hopefully he can pack on some weight. I would have been 37 weeks today, technically full term, and he is still just 4.5 pounds. Granted, that's a huge improvement over what he was, but he does need to put on some weight. And tomorrow's the big day for the eye exam. I'm putting all sorts of of hopeful energy into its going well so that Quinn's stay in the intermediate nursery is short. I doubt Quinn being ready to go home will happen before a transfer, but it is possible that he will go home from this hospital if tomorrow's exam doesn't show enough improvement. Let's hope it does.

2008-06-15T21:37:00.002-04:00

Okay, two biggies today, both of them good.

First of all, Quinn nursed for about 10 minutes today. It was so exciting! He latched on and just held on for awhile, looking confused, and then all of a sudden he started sucking and went to town with it. 10 minutes. He took breaks now and then, but he really got something this time. I think we've turned a corner with that. It will take more time, but we're getting there. Then I held him while he got the rest of the feed through his nasogastric tube. I can already see the difference this is making in my milk supply.

Secondly, Quinn got moved to the intermediate care nursery. This is one definite step toward coming home. There are no ventilators in this nursery, and we won't be kicked out for new admissions or procedures. We're on our way! He does need to come down one more notch on his oxygen before coming home, but I'm pretty sure that will happen within the time frame of his learning how to nurse. That's a very gradual process of working up to getting everything he needs by mouth. He needs to get stronger, but that is noticeably happening day by day. I think we're all getting stronger day by day.

1. I'm grateful for being one step closer to home.
2. I'm grateful to see the light at the end of the tunnel.
3. I'm grateful to have the children I do.
4. I'm grateful to have the husband I do.
5. I'm grateful to have the support that I do.

2008-06-14T22:21:00.009-04:00

I'm sad none of our pictures turned out especially well. Non-photogenic family here. But we've documented this time period. That's what counts. We had a pretty hectic day trying to fit everything in that we wanted to do. Sometimes I think weekends are busier than weekdays. I did get to nurse Quinn again, and this time he actually got something. I could feel it. Then I took Dorian and Faith to the pump room with me while Kurt held Quinn for the rest of his tube feed. Kurt hadn't seen him for several days, since I had been attempting to nurse him all this week. He thought Quinn had changed in that amount of time. I agree. He is looking bigger and more mature everyday. He was awake and active the entire time we were there, so that was really fun to see. His oxygen flow is down to 2 liters/minute. We're making progress! I didn't catch a weight for him today, but I know he gained from yesterday, so still in the neighborhood of 4.5 lbs. And we're hoping for good things next week so he can move closer to home.

Getting ready to nurse.

Switching sides.

Adoring daddy.I don't think Dorian poked Quinn in the eye, but I could be wrong.

Evaluating big brother.And the whole fam-damly. Faith is the only one who looks in any way decent. Oh well.

1. I'm grateful to be able to nurse Quinn.
2. I'm grateful to have pictures of our whole family.
3. I'm grateful to spend any amount of time together.
4. I'm grateful for the rain, that keeps our area green.
5. I'm grateful to be in the homestretch of our NICU time.

2008-06-13T21:41:00.002-04:00

The word "camera" is written on my left hand. I did that at the hospital after I banged my head against the wall for forgetting it yet again. Quinn is really changing and I need a newer picture of him. He's looking like a slightly smaller newborn now, instead of an alien. He's up to 2030 g, just shy of 4.5 lbs. He's actually filling out some of the preemie outfits. It's exciting.

We did try nursing again today, and that went better than it had in the past. This morning I decided to call and see when the lactation consultants would be available. I had learned from past experience that 9:00 was too early. I was guessing 3:00 would be too late, and 12:00 was lunch hour, so I wasn't sure how this would work out. I called, and yes, 3:00 was too late, and one of them was leaving at 12 anyway. I was expecting this, but Kurt was listening to this just shaking his head trying to picture this workday of less than 6 hours. But I did make an appointment of sorts for 2:40. I got there, and Quinn was wide awake again, which is a good start. The lactation consultant helped me latch him on. He had done it right before, but his mouth is still pretty small to get everything coordinated. And he did suck a little bit, and I know he got something, but it's tiring at first. The lactation consultant thought it was a good session, and that he would get the hang of it. The nurse kept saying the he doesn't have a very strong suck. I thought that was a very strange thing to say. It's like classifying him forever and all time as not having a good suck, like he can't improve on it. By all rights, he should have been safely and peacefully gestating inside me, and not worrying about how well he sucks. I'm sure he just needs practice. I have considered spending a lot more time with him there, both to nurse more often, and to be there when all these phantom specialists come and see him and make pronouncements about him, but going down that road with my two older kids isn't an appealing thought. I'm feeling quite torn between the three of them. I'm also sort of banking on the next eye exam going wonderfully, getting Quinn transferred, and then I can spend a whole lot more time with him when he's only 15 minutes away. Then things will really take off. But for now, well, I've come to think of our NICU time to be less like hell and more like purgatory. It's an in-between state, where we know it will end eventually, but we still have much to endure. The refiner's fire feels hot sometimes.

2008-06-12T22:02:00.002-04:00

I'm feeling slightly discouraged. I went in this evening for the 6 pm feed, so that I could feed Quinn. It looked like that would be a good time. When I got there, he was awake and alert, looking around and squirming. I took him out, and got him latched on, and, nothing. He was still alert, but made no effort to actually nurse.I tried both sides, different positions, and still he wouldn't do it. The nurse had a bottle ready, and he took about 10 ml from that before falling asleep, and got the rest in a tube. I know it's early yet, that he just started feeding by mouth, but I don't feel like we're off to a good start. And I'm rarely there when the lactation consultants are there. I'll try and be there during their working hours tomorrow. The other reason this is discouraging is that my milk supply hasn't responded well to my efforst at increasing it. I do like eating oatmeal, and thanks for the suggestion to try that, but haven't noticed a difference yet. I'm currently not producing enough to feed him as it is, and we're going through the stored milk in the freezer. And there is so much wastage between getting it from me into Quinn. They mix up his fortifier with his full day's worth of milk. After it's thawed, it's only good for 24 hours. So whatever they thaw that is more than he needs that day is wasted. Then there is always a little left in the syringe after tube feeding. There's no question getting it directly from me is the most efficient way to do it. I have a book about preemies that says basically "Don't feel bad. The vast majority of preemie moms quit breastfeeding." Not the pep talk I was hoping for. I've long thought I should look up the local La Leche League chapter, and now seems like a good time to do that.

Another sort of discouraging thing today is that Quinn hasn't made any improvement respiratory wise all week. He might have even regressed. For the last two days, he hasn't really been below 30% O2, and hasn't decreased flow rate at all. That could be because he is trying to figure out how to eat, but it's still not what I'd hoped. I don't know how many miracles I'm justified in asking for.

On the up side, Quinn is very nearly 2 kg, and will probably get there tomorrow. That's roughly 4 lbs 6 oz. He is growing. I'll take progress where I can get it. And I need to tape my camera to myself so that I finally remember to bring it. Quinn is changing as he grows, and I need to keep documenting that. Here's to a more hopeful tomorrow.

1. I'm grateful for whatever time I can spend with Quinn.
2. I'm grateful for the gorgeous day we had today.
3. I'm grateful I live in such a pretty place.
4. I'm grateful Kurt has the day off tomorrow.
5. I'm grateful for good friends.

2008-06-11T21:13:00.002-04:00

The waiting game is hard. The main question I had for today's meeting, which I knew wouldn't be answered definitively, is when can Quinn come home. The answer we got was, it all depends on Quinn. All he needs to do is prove he can breathe, suck, and swallow. It's simple, but it's not easy. The neonatologist said that Quinn has made tremendous strides in the last week or two, but he still has progress to make before we can get him home. And the only thing preventing the transfer is the ophthalmologist's next exam. It's possible then that next week he could get transferred and at least going to see him would be easier. There was a nurse practitioner there as well, who said that the other hospital has a level III NICU. I had thought they were a level II, but I guess not. That really surprised me given that the picture we had been painted of them was that they were basically worthless. Being a level III only makes them semi-worthless, I guess.

My other main purpose in this meeting was to scare up any other hidden things that might hold us up, like the ophthalmologist, whom no one predicted would be the deciding factor. We didn't come up with anything like that, but there were some things we weren't aware of. One is that Quinn will be followed by a developmental pediatrician, and have an appointment with him in 3 to 6 months, just to see if he's doing the things a 3 to 6 month old baby should be doing. Another is that there is yet another specialist who will work with us about getting Quinn totally off oxygen once he is home. We haven't met either of these people yet. Another fascinating detail that came out today is that the need for a VCUG test did not come from the urologist. It came from someone else among the neonatologists and NP's there. The urologist never intended to do it. And he doesn't need to see Quinn for another 2 to 3 months, unless the hernia gets worse, which isn't expected as of now, but that's something we'll need to keep a watch on. This is what happens when messages are passed through too many people. We've all played telephone. We know what happens by the third or fourth person. They had hoped the urologist would be at this meeting, but no such luck. We'll have to track him down sometime in the future, although I still plan to seek other opinions on the hypospadias repair. We also talked about whether or not Quinn needs to see an orthopedist. The consensus was that currently his foot turning out isn't severe enough to warrant that, and it's something our pediatrician is capable of watching to see if that will be necessary in the future. And finally, we confirmed that no, there isn't a weight limit for going home, Quinn just needs to prove that he will keep growing and progressing. So, we checked a lot of questions off our list, and the main answer was wait and see.

Because of the meeting, we didn't spend very much time with Quinn himself today. I had brought up in the meeting that that is a huge reason to get him transferred, so that we can actually spend more time with him, and I could go in more than once per day to nurse him. Everyone agreed, but it's all dependent on how the next eye exam goes. So pray for better vision, and better breathing, and better eating, and, well, better overall. That's probably far more efficienct than looking at individual parts. Quinn is more than just a sum of his parts. Tomorrow I'm going in for his early evening feed and try to nurse him again. I would like to have done that today and we got there just before the meeting and could have done that, but his nurse started his feed early, because she was going to the meeting with us. It was probably my fault, since I didn't let anyone know I wanted to try again, but I was disappointed. He was awake and very alert while we were there, and interacted with us, but that was precious little time. The idea that he'll come home and I'll have unlimited time with him is entirely foreign to me right now. I can't wait.

2008-06-10T21:06:00.002-04:00

Tomorrow's the day for the big meeting. Maybe I'm exaggerating. But it seems to be looming. Among the things I'm sure we'll discuss is when and how we can get Quinn out of this hospital, and whether that's to transfer to another hospital or to go home. Yes, we're actually coming to that point, amazing as it seems. He's coming along, and it will happen soon. I did try to nurse him this morning. He was so ridiculously sleep however, and try as I might, he wouldn't get into it. He latched on well enough, and I know he got a taste of it. But I was hoping he would get the taste and say "Mmm, more more!" But he just lay there. He has gotten a bottle, so we tried that next. He got roughly 4 ml before falling asleep again. Then he needed to be tube fed the rest, so I put him back in his isolette. The little stinker immediately opened his eyes, looked around, and waved his arms, just like he wanted to be involved in everything going on. I might have tried again at that point, but I had had to bring Dorian and Faith with me, since we were going somewhere together immediately afterward, and they were sort of losing it. They had been pretty good all things considered, but it wasn't the calm peaceful environment that is ideal for nursing, especially the first time. I did ask about a supplemental nursing system, and the nurse said yes, they do have those available, but we had come too early for the lactation consultants. They didn't come in for another hour. There were some really good things about our session today. Quinn didn't desat at all while I was trying to feed him, and when I left, I noticed his oxygen was about 23%. His new machine doesn't have a digital display, just a dial, so I'm estimating. He lost a bit of weight yesterday, down to 1910 g. But overall he has gained well lately, so one day off isn't a big concern. I'm kicking myself that I didn't bring my camera today. I was running around like an absolute madwoman this morning trying to get everything ready for our day downtown, and the camera lay forgotten on the shelf. Next time.

1. I'm grateful I was able to nurse my son today.
2. I'm grateful I'm still producing milk for him.
3. I'm grateful to live in the US.
4. I'm grateful for people uniting in a cause.
5. I'm grateful for everything my children have taught me, hard though some of those lessons were.

2008-06-09T21:15:00.002-04:00

It's too hot. I've been told that that's why my milk supply isn't what it should be. My body is using its water elsewhere. But I need to get my milk back up because, guess what, hopefully tomorrow I will finally breastfeed my son! It's been long enough, certainly. Quinn's oxygen flow is down one notch, and that's enough to say bring on the milk! He'll figure it out quickly, I'm sure. The issue is that he isn't used to working for his food. That's something he has to get in shape for, so it won't be very long at first. But we'll get there. And actually nursing him should do wonders for my milk supply. It's much easier to produce milk for a real live baby than for a machine. His feed has been increased in the mean time, up to 34 ml, because he is 1930 g, 4 lbs 4 oz. He's cruising right along.

I saw a nurse practitioner today who was not in the least encouraging about transferring. She said yes, they were planning to talk to the ophthalmologist about possibly doing an exam tomorrow and then going three weeks, in the hopes that Quinn will be discharged by then, but she thought that was a set up for disaster, in case Quinn isn't quite ready in three weeks, and then he would have to be pushed for it because it's so important to have this exam. She kept saying that like I had denied it at some point. I never ever said to blow off this ophthalmologist, Quinn doesn't need him. I just didn't understand why he didn't go to the other hospital. I still don't, and neither does anyone else for that matter. I asked the NP why no one knew that the other hospital had no ophthalmologist, and she didn't have a good answer for me. It sounds like yet another example of things getting lost in translation to me. I've had enough of that experience. We have a meeting set up on Wednesday afternoon with the neonatologist, and possibly the urologist, just going over everything that still needs to happen before Quinn can leave the hospital, either for transfer or for home. And I'm hoping this time there won't be a birth right at that moment. We need to get the full picture. We've gone far enough without it.

1. I'm grateful I can feed my son.
2. I'm grateful I can witness the changes and growth he has had.
3. I'm grateful I had a good day with Dorian and Faith.
4. I'm grateful for the power of prayer.
5. I'm grateful for eternal perspective.

2008-06-08T21:41:00.004-04:00

I went to look at the robin's nest today and found one large baby bird in it, which flew away as I got closer. That didn't take long. They are all gone now. I'm hoping it's a good omen. The nest has served it's purpose and the baby birds can do without it now.

I'm hoping another much larger nest will have fulfilled it's purpose soon. In some ways, I think the homestretch of Quinn's time in hospital is harder than the beginning. At that point, we just accepted it would be a long time before we would be taking him home, and still even had thoughts of whether that would happen at all. But now that we can see the light at the end of the tunnel, I find myself getting more impatient. Things that still need to happen are: he needs to come down on his oxygen flow rate, and he needs to not be tube-fed. The oxygen flow rate is currently 4 liters/minute. It needs to be 1 liter/minute to come home. And I think we are getting close to the point where Quinn can start actually feeding rather than being fed. I'm going down tomorrow morning and will hopefully try to nurse him then. It's a very strange concept that it's been more than 2 months and I personally haven't fed him. But then, there are a lot of strange concepts going on here.

There is one thing I'm trying not to get excited about. Kurt said during rounds this morning, there was talk of getting the ophthalmologist to come back this week and check on Quinn, rather than next week, and then he can transfer, and by the time Quinn might need another check-up with him, he would very likely be home, and we can do this on an outpatient basis. The hospital really is trying to work with us, wonder of wonders. Either that, or they are anxious to get rid of me. I accept that as a possibility. Okay, I'm going to redirect my thoughts to a more positive light than I have the last few days. I feel like all I've been doing is coming on here and spewing out everything that is driving me up the wall. I'm not sure if that was truly therapeutic or not. But I think it is good to have it preserved none the less.

1. I'm grateful I have kept a record of this tumultuous time.
2. I'm grateful Quinn improves daily.
3. I'm grateful summer is here, despite the heat.
4. I'm grateful for all those who have given so much service to our family in the last few months.
5. I'm grateful I'm grateful to know there are so many still praying for us and for Quinn.

2008-06-07T19:41:00.003-04:00

The robin's nest is weighing down the branch it's sitting on. The babies are very crowded in there. I wonder how crowded our house will feel with 5 people in it, especially as 3 of those people get bigger. I hope the other 2 don't get any bigger.

And the day when there are 5 people here may be coming soon. Quinn had his primary nurse today and she talked to me a lot about what things will be like when he comes home. She talked about what having oxygen would be like, and the different supplements he is getting now and will likely still be getting then. He's currently getting iron and just started a vitamin supplement with all the fat-soluble vitamins, A, D, E and K. He's also getting a very low dose of erythromycin, because one of its side effects is it moves things through the bowel more quickly. They swear to me it's not high enough to kill off gut flora, but apparently it's high enough to have side effects. One NP told me they often use drugs in the NICU that aren't specifically what they were designed for. She said they've had babies on Viagra, because it's a vasodilator. Just what we all wanted to know, right? And of course, it's likely Quinn will be sent home with some sort of fortifier, which means we wouldn't be breastfeeding all the time. He would need at least a couple of feedings that were fortified, so that means either bottle, or supplemental nursing system. I actually spoke with the nutitionist today, and that's what she told me. Nice to actually see this person face to face, unlike every single other specialist who has dealt with Quinn, some of whom have mercurial opinions on his needs. The urologist has evidently decided to wait on the VCUG until he is 3 or 4 months old. I have no idea where that came from, but I definitely need to get the real story on that. I also asked about the ophthalmologist's pronouncement of "immature." The nurse said it isn't usually graded unless surgery is looking imminent. At this point, all that was needed to know is that further observation is indicated, so "immature" is good enough for now.

And Quinn continues to do well. He's on the same respiratory settings, and should to come down just a bit on the rate of oxygen flow before we can begin breastfeeding and bottle feeding. But that doesn't happen all at once. He's 4 lbs 2 oz, so coming right along. He was pretty sleepy when I held him today, but that's what babies do. Earlier in the day, he had been more active. As long as he keeps doing what he's doing, I can almost get along with the other people. I just have to keep that in mind.

2008-06-06T22:57:00.002-04:00

Another day, another bruise on my head from banging it against the wall. I spoke with Quinn's nurse this morning, and asked her about why we hadn't heard the ophthalmologist would be the one to hold us up. It should not have been a surprise to them that he might want to continue to monitor Quinn. She agreed, and said the only thing she could think of is that no one knew the other hospital wouldn't have an ophthalmologist available. Sounds like bull to me, as this is probably the most common hospital they transfer to, and they should definitely know what it's capabilities are, but that was the best she could do for me. Actually, that's not true. She said she would arrange for Kurt and me to meet with the attending neonatologist this afternoon and get some questions answered. She even offered to babysit Dorian and Faith for us while we did that. That was quite generous of her, and I still don't know how she planned to do her job and keep track of two very small and active children, but at the time, it seemed like a good solution. So, as soon as Kurt got home from work, we made our way downtown, making a list of questions on the way. But life in intensive care isn't predictable. When we got there, everyone was busy with a twin delivery. So we didn't get to have our conference today. I'm not upset that the doctor was busy when we got there. That's his job and he was doing it. I am upset that we have gone for days on end with incomplete information. I wanted to once and for all get the entire picture of what was happening. I did get the phone number for the ophthalmologist, and will call him on Monday, if for no other reason that to actually have contact with this person who has worked with my child. His diagnosis of Quinn's eyes was "Zone 2, immature." We were handed a brochure about preemie vision which indicated there are several different levels of "immature." I saw Quinn's chart where the diagnosis was written (the nurse was holding it. I didn't do it myself. I'm trying not to make any more waves than I already have.) All it said was "immature." So I need more info than that. I also need to track down urology. The nurse was quite surprised the VCUG hadn't been done. I told her I thought they needed our permission. She said she was pretty sure it fell under the general consent. So that's two for and one against as to whether or not that test is covered by the intitial consent form. I guess that settles the question then. Either way, and whether it's done or we decline it for now, it's another thing holding up Quinn's discharge. The other main question we wanted to cover in our conference today was the orthopedist referral. We haven't heard anything more about that either. So basically this was a wasted week as far as the specialists are concerned. My ever-wise husband didn't get excited when he was told Quinn could transfer by Monday. I should have followed his example, especially since I already knew better than to trust such a thing. And now it may not happen at all. He may be held hostage at this hospital until he's ready to come home. Curses.

I've definitely gotten into a pattern that last few days, updating both on Quinn himself and on the politics surrounding him. And they are every bit as ugly as the presidential election. But onto the little man himself. Quinn is doing marvelously. He came through his second day on the hi-flow just fine, and he is over 4 lbs now. 4 lbs 1 oz to be exact, or 1845 g. He is now on an iron supplement which I was told is an indefinite thing, so that's something he will get even after he comes home. And although I've learned by sad experience not to let too much hope get ahold of me, I think it's possible that we might start breastfeeding soon. I didn't get a good description of what Quinn needs to accomplish before that, but it sounds like it could be as early as Sunday. We'll see. I'm getting more cynical by the day. I used to declare myself the most cynical person I knew. I'm pretty sure I've only gotten worse since then.

Alright, happy thoughts all around, and here's to a good night's sleep. I could definitely use one of those.

2008-06-05T21:14:00.003-04:00

What a difference a couple of days makes. This picture is from Tuesday night.

And here's one from tonight.

Extreme close-up! Aahhhh!
At about noon, Quinn was switched to the hi-flow nasal cannula, all steps toward breathing unassisted. And so far so good. The tape was left on his nose in case he needed to go back on the CPAP, but it's looking promising. I was there this evening, so it had been several hours at that point. His O2 was increased to 30% for this change, but that's not unusual. Before that, it had been 27 or lower, so we're still headed in the right direction. He isn't 4 lbs yet. He didn't gain anything yesterday. But hopefully tomorrow we'll break that barrier. He's getting the same amount of milk (my milk!) with the new fortifier, which comes up from the dietary lab in a half-gallon milk jug, and then the milk is added to it. Sounds really scientific, doesn't it.

The tigress in me is getting awfully tired of being on constant battle alert. I got a call from a nurse practitioner today saying that they don't think it's a good idea to transfer Quinn next week because the ophthalmologist doesn't go to the other hospital, and he wants to see Quinn again in 2 weeks to follow his progress. The NP said Quinn would have to ride back in an ambulance, so he might as well just stay where he is. I fought to not chew her out right then and there, so I didn't say anything. Then I asked why that was such a big deal, and she said if it's determined at his next appointment that he needs more monitoring for his eyes, then he'll need to be admitted back, and the transfer would have been pointless. She said it's possible he might need to have this condition monitored weekly for awhile. Ironically, if he were sent home, we'd simply bring him back for these appointments, just like you would anyone else. But because he's an inpatient, you can't just take him in a car. That spells lawsuit. She said insurance wouldn't cover the ambulance ride. I told her I would be willing to pay for that if it meant getting him closer to home. She said the money wasn't the only issue. It's the fact that the ambulance is needed and "That's not a good use of their resources." "Oh, but my resources don't matter?" I asked. I was obviously quite ticked at that point. "No, that's not entirely true..." Maybe not entirely, but there is truth in it, admit it. Parents don't matter to them. The most important people in the team of caregivers don't matter to them. We're the most important because, despite our lack of knowledge and know-how, we are the ones who will live with any and all long-term consequences of what is done to our child. Once he's discharged, he's out of their lives, and they won't know what happens to him. But if I allow something to be done that happens to be the wrong decision, guess who will live with it as long as she lives? I'm already harboring an enormous amount of guilt for how poorly my pregnancy went. I don't want anything else added to that list. I finally told her I wasn't going to agree to anything right then, that I needed to take the time to calm down before that happened, and since this isn't a decision to made immediately, I would take that time. She agreed, and that was that. Now honestly, it's a new curve ball everyday in the quest to break him out of there. We hadn't heard that the ophthalmologist of all people would be the one to hold things up. One of the thousands of people who have poked, prodded and pained our baby whom we've never met. I'm contemplating taking up residency at the hospital until Quinn is discharged. Despite what is going on at home that I do feel like I need to be there for my older kids, the events of the last week have made it abundantly clear that I'm needed by all three of my kids. I'm not quite sure how all this will work out just yet, but I think that's what needs to happen. Wish me luck and pray for improved vision, literally in Quinn's case, and figuratively for the rest of us.

2008-06-04T18:43:00.003-04:00

Mama bear, hear me roar.

I slept for a total of 2 hours last night, and spent the rest of the time trying not to think about everything that's going on. But I'm sure it's not a huge logical leap to see that concentrating on what you don't want to think about makes it hard to forget about it. The more I thought, the less sense things made. So this morning, I got on the horn. All told, I made somewhere in the neighborhood of 17 phone calls today. But it wasn't until about 4:30 this afternoon that I finally talked to the nutritionist, who was the main person to make any changes in Quinn's diet. She began by apologizing profusely that we hadn't been informed of the change beforehand. She recounted how that had come about, and that we most definitely should have been told and presented with the options before she went ahead and made the orders. And it turns out there are other options. There is a different fortifier that has the calcium and phosphorus Quinn needs that can be used instead. She said that isn't usually her first option because A) the Ca/P isn't quite as high as in formula and B) it isn't as sterile. Human Milk Fortifier usually comes in individual packets that are mixed in with the milk. Formula used in hospitals comes ready mixed in bottles. But this other kind of fortifier comes in a can of powder, much like the baby formula available in stores. Therefore it can be opened and closed multiple times, and that can in theory introduce bacteria. I pointed out that breastmilk isn't sterile and they definitely use that. She agreed, but said in that case the benefits of breastmilk definitely outweigh the risks of infection from it, and they really try to reduce any source of contamination. She then offered this other fortifier as an alternative option for Quinn, to which I readily agreed. She apologized again, saying she would never have put the orders in if she had known I was not okay with Quinn getting formula, but we already know that story. I told her that this is something that really worries me about Quinn's care, the fact that there are roughly 1,000,007 people involved in it. The message that the nutritionist wanted to start formula was passed through three different people before a slightly garbled version of it came to us. Consequently, we didn't know what was happening for 2 full days. Then it took another full day to track her down and get it straightened out. This, more than the distance, is the reason I really really want to get Quinn transferred to the smaller hospital. I still don't know when that will happen. One of the people I talked to in trying to get the formula thing under control was the nurse practitioner on call for today. She said she was pretty sure urology needed our express permission for the VCUG, and that that conversation would afford an opportunity to ask more questions about it. So all in all, I'm feeling a bit better about life today. I still haven't called the patient advocacy office at the hospital to find out why we poor stupid laymen aren't allowed to look at charts. That will have to wait for another day. I had bigger fish to fry today. And mission accomplished. He is getting no more formula. Just breastmilk and fortifier.

As for Quinn himself, he is still doing wonderfully. He's stepping down slowly but surely on O2 and pressure, and he did gain weight today. He's at 1785 g, 3 lbs 15 oz. Kurt said Quinn was awake and smiling while he was there, and that was fun. We're getting closer still to our goal of all this being a distant nightmare.

2008-06-03T21:26:00.002-04:00

WARNING: venom ahead. Reader discretion strongly advised.

I'm sitting here pumping milk, as I do every evening while I update. But I have to wonder why I even bother with the milk. Evidently, I'm not good enough for my own child. Through a series of miscommunications, I didn't find out until today that Quinn is only getting my milk half the time, and formula the other half. They started doing this on Sunday. A nutritionist apparently tried to talk to Kurt about it when he was there yesterday. But she made it sound like she was talking about the addition to the milk with Human Milk Fortifier, not straight out giving him formula. So Kurt said he already knew that was going on, not realizing what she was talking about, and everyone went on their merry way. When I got there this evening, Quinn was feeding, and I looked at what was left to be given to him and thought "Hmm, that doesn't look like milk. It looks like wallpaper paste." Well, that's because it wasn't exactly milk. The nurse told me someone had tried to tell us about it, but obviously that didn't happen as planned. The concern is that they don't want to put too many calories into my milk because it messes with the osmolality of it, and throws that off for Quinn, and also that he needs extra calcium and phosphorus and he hadn't done well with the supplement they had given him. So, in comes the formula which has extra calories and the extra Ca and P. Guess what. He lost 25 g yesterday and had only gained 15 g the day before, whereas the day before that on full breastmilk, he had gained nearly 100 g. Fat load of good that extra formula is doing, eh?

I talked to an NP about what still needs to happen with transferring, and she talked about urology wanting to do a VCUG on him. This is a test to see if there is any urine going up into the ureters, increasing the likelihood of urinary tract infections. I had heard about 6 weeks ago that it would be recommended for when he was around 6 months old. Either I don't remember right, or the recommendation changed, and the NP didn't know which it is. But she said it's likely they would want to do it before he is transferred. I asked her to decribe the test in greater detail, which she did, just as I did above. I asked why it was indicated for him, and she said it's because he was small for dates, and because of his hypospadias, that an anomaly in one part is often enough correlated with anomalies elsewhere. She mentioned that he had had an ultrasound when he was just a few days old of his kidneys and that it showed no signs of reflux. But that wasn't as definitive as the VCUG. Then I asked her what the risks are. She said "Minimal." I tried again. "What are the risks?" She said there is always a slight risk of trauma as the catheter is inserted, but don't worry, radiology has done this lots of times before, they know what they are doing, and other than that, there are just very minimal risks. I said "I want to know what they are. I'm not saying they outweigh potential benefits, but I can't feel good about the decision without knowing what they all are." She really didn't have a good answer for me, and continued to downplay any risks. If I hadn't been holding Quinn, I'm sure I would have been a lot more demonstrative of how frustrated I was that I didn't feel like she was listening to me. She finally said, "Would he be okay without this test? Sure. Is it possible that he might have reflux and get UTI's? Yes. Wouldn't it be better to spare him the potential complications of that when we have this simple test to know for sure?" I told her I wanted to know more before I felt good about it. But then it occured to me and I asked if this was something that they would ask our permission for or if it fell under the blanket consent we signed at the beginning. Blanket consent must be a boon to them. She went on to tell me that it must be so hard to be in my position. By this point I was extraordinarily bitter and said "You're right. You have no idea. I don't even feel like he's my child. You do these things and we have no say. And now even my breastmilk isn't good enough for him. That was the one and only thing I could do for him and now that doesn't even count." She tried to tell me not to think that way, that of course it's doing some good, he's still getting some and will still use the supply that is currently taking up one third of our freezer space, but the words rang hollowly. They sounded like token gestures.

Here's another fun tidbit for today. As usual, I picked up Quinn's chart to see how the day went, and a nurse at another station told me that they don't allow parents to look at it. I asked why and all she could say is that they don't allow it. I said I had been doing that for a long time, but the broken record just said they don't allow it. When Quinn's nurse came back I asked her what was up, and she said it's a new rule that they don't allow parents to look at it while the child is in the hospital. You can ask any questions you want from anyone, but you yourself can't look at it. Does that sound extraordinarily fishy or am I just paranoid? And once again, she couldn't tell me why, just that she had only just heard about the new rule. And no, she didn't know what they could do to me if I continue to look at his chart.

Here it comes, and yes I am yelling. QUINN IS MY CHILD! HE DOES NOT BELONG TO THE HOSPITAL NOR TO ANYONE WORKING THERE. I HAVE A RIGHT TO KNOW WHAT IS HAPPENING AND HAVE A SAY IN HIS CARE.

I realize he wouldn't be here without their help. This won't be a popular idea, but I submit to you that it is only unthinkable until you are in this situation. I am here, and so it is on my mind. It's fortunately only a few parents who look at their child and wonder if death isn't the more merciful option. I do believe that eventually Quinn will be okay, but consider his life thus far. He has known little besides pain, fear and chaos. Our visits are a relatively small portion of his day, and when they coincide with meetings like tonight, where I was exuding negative emotion, I don't know how beneficial that is anyway. In short, Quinn has led an absolutely miserable existence. Some babies live their entire short lives in the NICU and that is all of this earthly life that they know. Pain, fear and chaos. And parents who are too handicapped to even provide positive emotional influence. I could be entirely descibing my own experience, and everyone else whose child ends up in the NICU doesn't feel this way, but somehow I doubt it. I won't pretend it represents every NICU journey, because they all vary greatly, but I seriously doubt I am alone. And it's a taboo subject, so no one wants to hear about it. Well, there it is. I've bared my soul to the world. Do as you like with it.

2008-06-02T21:16:00.001-04:00

On a slight side note, I finally admitted to myself that my blog was pretty pathetically utilitarian and did something about it. Can you tell my favorite color is green? So, enjoy the new look. Now back to your regularly scheduled blog.

2008-06-02T20:25:00.002-04:00

I'm still trying to contain myself. It's happening. Balls are rolling (and not heads!) Gears are in motion. And most important of all, one very little boy is making enormous strides. Kurt talked to an NP today who thought the transfer might happen within one week. That still seems like an awfully long time to accomplish the short list of things they want to do, but at least someone is willing to come out with a concrete date. That is a huge step from the vague answers we'd been getting until now. He will have his next eye exam either tomorrow or Wednesday, and urology is going to look at his hernia again, which I had all but forgotten about. It was mentioned in passing about 2 weeks ago and nothing since. I did some cursory research on the subject in Google Scholar, one of my new favorites, and then had other things to think about. But that needs to happen. The orthopedist may or may not happen before he leaves. That apparently isn't critical right now, and can be done as an outpatient anyway, so not a priority for transfer.

As for Quinn himself, he is up to 1755 g, and so has officially gained an entire kilogram since birth. That's up just a little from yesterday and translates to 3 lbs 14 oz. He's now getting 32 ml of milk per feed, and we're hopeful he can start nippling soon. Here's the exciting part though. All day long, his O2 has been in the mid-20's. I could hardly believe that when I heard. And his pressure has been lowered slightly, from 7 to 6. That doesn't sound like a lot, but I'll take any step in the right direction. The NP said she is no longer concerned about his lungs. She said his gut is a bigger problem, and it's not a big problem. We're on our way. I believe in miracles.

1. I'm grateful for the small things in life.
2. I'm grateful for miracles.
3. I'm grateful for the chance I have to be the mother of this special spirit.
4. I'm grateful for the example of determination from
5. I'm grateful for a hopeful future.

2008-06-01T20:54:00.003-04:00

Do you know how hard it is not to get your hopes up? Kurt was there during rounds today, and they discussed transferring Quinn. It sounds like Quinn just needs a quick glance from a parade of specialists and then he can go. His breathing and digestion are stable enough for the other hospital to handle, so it's looking promising. But they want him to be seen by a urologist, an ophthalmologist, and an orthopedist. Kurt didn't get the specifics, but I'm guessing the urologist is going to check if Quinn's testicles have descended fully. Last they looked, one was down and the other on it's way, so that's just a follow up and shouldn't take too long. The ophthalmologist is going to follow up the eye exam he had three weeks ago, which is standard procedure for preemies. The orthopedist is going to look at his left foot, which turns out a bit. That's not uncommon for someone in Quinn's circumstances, but it may or may not need intervention to straighten out. What I really want to do is sit down with someone who fits the category of The Powers That Be and make a list of just exactly which i's need to be dotted and which t's need to be crossed. Every time we've talked about transferring, it's been in rather abstract terms, like "not yet." Well, duh, I figured that much. How about when? What are we working toward in order to get this to happen? And every time I think we have it figured out, something new comes up. The orthopedist was a new idea today. But surely the crooked foot had been noticed before, we just didn't hear about it. So that will be my project for the next few days. I wonder if they will be glad to get rid of me. Oh, and it's been a couple of days since I've included a weight for Quinn, and that's another sort of exciting development. He is now 1740 g, about 3 lbs 13 oz. He has gained more than 2 pounds since birth. So we're definitely doing some growing now. Here's to continued progress.

1. I'm grateful for Sundays.
2. I'm grateful for any and all progress.
3. I'm grateful that I'm not going through this alone.
4. I'm grateful Quinn is my third child.
5. I'm grateful I was born of goodly parents.

2008-05-31T20:03:00.002-04:00

Another routine day. Feeds are 28 ml every 3 hours, O2 varied between 29 and 31 all day. And yes, it was that specific. I looked at Quinn's chart, and each entry was either 29 or 31. I've gotten into the habit of checking the chart when I first get there, and it seems to depend on the nurse how they react to that. The ones who know me don't seem to think twice about it. But ones who haven't seen me before, like today's nurse, fairly snatch it out of my hands. That's happened at least 3 times, but no one comes right out and says "You shouldn't be looking at that." They say things like "I'll give you a summary of today." or "If you have any questions, be sure to ask me." as they are taking it back from me. Maybe I'll actually ask one of these days if it's okay for me to look at the chart myself. But I've been at this for 66 days now, and deciphering the chart opened up a new world. I get a different perspective from the chart than what the nurse tells me. Put it together and it's a bigger picture. Quinn is my child. I want the full picture. But I probably don't need to explain this. It's a natural desire. Pray for continued improvement.

1. I'm grateful for every step in the right direction.
2. I'm grateful for Quinn's determination to get better.
3. I'm grateful for any and all time we can spend together as a family.
4. I'm grateful for weekends, which mean family time and horse time.
5. I can't believe I'm going to admit this one, but I'm grateful for the rain. We actually needed it, and I admit that. I've come far.

2008-05-30T19:48:00.003-04:00

We keep on truckin'. Quinn still has the same respiratory settings, O2 in the low 30's, and PEEP of about 6. I wonder if this constitues "stability" yet. Kurt got to hold him during a feed today, and said he did well with that. They've averaged his feeds now. They had brought him down from 28 ml to 24 yesterday. Now he's getting 26. And he's 1645 g, so creeping up in weight as well. We're still waiting for the all-systems-go to get transferred, but I can actually see it on the horizon now. Very exciting. That's about all that's new and exciting today.

1. I'm grateful for friends, new and old.
2. I'm grateful for visitors, and that visitors motivate me to do some deeper cleaning.
3. I'm grateful for beautiful summery days.
4. I'm grateful I learned by example howto take care of home and family.
5. I'm grateful I can find joy in my daily life.

2008-05-29T22:15:00.004-04:00

Mama Robin spends hardly any time in the nest anymore. Keeping four babies fed is a full-time job. I see her out pulling worms and flying back to stuff them in the babies' mouths. Watching her gives me visions of what my life will be like when Quinn comes home and I'll be literally feeding one child and helping two others get fed, clothed, bathed, played with, etc. Makes me tired just thinking about it.

Believe it or not, we're getting closer to that time. Quinn is making baby steps of progress. I hope I can do justice to this explanation, as I'm still trying to grasp it myself. He has been on the CPAP for 3 days now, and was on bi-phasic setting. That means it provides different pressures for inhalation and for exhalation. The inhalation pressure helps to fully inflate his lungs, and the exhalation pressure keeps them open between breathes. At least I think that's what it means. As I said, I'm still trying to figure all this out. So, on the biphasic setting on the machine he had before, which can handle higher pressures, the PIP, peak inspiratory pressure, was about 18 cm H20, and the PEEP, positive end expiratory pressure, was about 7. But the machine he's using now apparently isn't really designed for that much pressure, and the settings were 11 for PIP and 6 for PEEP. But even that seemed to be too much for it. All night last night, the machine was shutting itself off when the PIP was exceeded. That didn't affect Quinn, but it greatly annoyed his nurse. At 6:30 this morning, it was decided to discontinue the biphasic setting, and set the PEEP at 7. So there isn't nearly as much pressure helping him inflate his lungs as there was before. And he seems to have done well with it. His O2 was in the low 30's, slightly higher than yesterday, but not surprising given the new settings. It's hard to improve everything all at once.

I hope any of that made sense, and better yet, is somewhat correct.

He gained more than 100 g yesterday. And that was "too much." This poor kid can't seem to do anything right. But it will probably even out a bit, and that puts him to 1605 g, 3 lbs 8 oz. He's gained nearly 2 pounds since birth. I watched him get weighed tonight, but he had his diaper on, and the nurse said when she changed it, she would weigh it and subtract that from the overall weight. The weight was 1650, but she didn't have a guess how much the diaper would weigh. Apparently he varies quite a bit how much he puts in it. I'm sure glad no one is weighing every drop of pee I produce.

In other less technical news, I got to kangaroo again tonight, and right away, the nurse put Quinn's oxygen down, from 36 to 30, and he stayed there until I left. He was clinging to me part of the time, and I got a couple of comments how he was holding on for dear life. It is the hardest thing to do to give back your own child. Anyway, I mentioned I was there when he was weighed, and he was very alert and active through that process. The nurse, who is his primary night nurse, and probably knows him better than I do by now, said she chose him as her primary because he seemed so laid back. And she says he loves the weighing process because he gets to look at something other than his bed. And he did seem to take in everything around him, all the sights there are to see from the corner of the room. The nurse mentioned transferring hospitals, and I tried not to get too excited. She said as long as he's stable on the CPAP and doesn't need the biphasic settings, that should be enough. I asked her what stable meant, how long they give it before it's declared "stable" and she said it depends on who the attending doctor is. I laughed out loud at that. Well do I know that set numbers are just guidelines and that these are all judgment calls, but it was sort of refreshing to hear someone admit that. But I'll continue to be hopeful. And I think I have reason to be.

1. I'm grateful for continued progress.
2. I'm grateful I could hold and commune with my baby tonight.
3. I'm grateful for all three of my children.
4. I'm grateful for nature and all that I learn from it.
5. I'm grateful I learned how to learn.

2008-05-28T20:47:00.002-04:00

No real changes today. Same feeds, same respiratory settings, and he's even lost a bit of weight, which is worrisome to me at least because it's been nearly 2 weeks since he's really gained anything. He's been hovering around 1500 g for quite some time. And they are stuffing the kid, so I'm not quite sure where it's all going. The good news is his belly isn't blowing up like it did last time he was on the CPAP, and may it stay that way. He also got a blood transfusion. His hematocrit was on the low side, but he had no other symptoms of needing one. A preemptive strike I guess.

Kurt got to hold Quinn today, after being told multiple times that he might not get to because they were expecting to admit a 24 weeker (!) at any moment. They finally relented, with the understanding that Kurt might get kicked out without much warning, but he was there for about an hour and nothing had happened by the time he left. Never a dull moment.

1. I'm grateful for routine days.
2. I'm grateful Dorian and Faith love each other and love being in each other's company.
3. I'm grateful our family has had our eternal perspective to see us through crisis.
4. I'm grateful for continued prayers and good thoughts.
5. I'm grateful for my education, both real life, and theoretical.

2008-05-27T21:33:00.002-04:00

There are now four ugly baby birds living just outside our front door. I looked last night and there were two. This morning there were three. Then this afternoon, there were four. I got closer to the nest while Mama Robin was away, and the baby birds heard me and poked up their heads and opened their mouths. Ahh, instinct. Love watching it in action.

In other nests, Quinn continues to do well. He hasn't blown up yet being back on the CPAP, though we're by no means certain it won't happen again. His O2 has been in the low 30's and even once in the 20's today, so definite improvement. And apparently they decided he does need more fluid, so he's up to 28 ml per feed. I don't quite get what sparked the change, but I swear I had nothing to do with it. They just said he needs to put on weight. I looked again at the chart, and he isn't quite off of it, just below the 10th percentile. But we're hopefully changing that. I kangarooed him for about an hour tonight and that was fun as always. I have a hard time picturing the day when I won't have to give him back. But it will come, sooner or later.

I called this morning to get an update, and spoke with his primary day nurse. She was excited at how well he is doing, that he looked good and was so alert and active. It was good to hear. Then she said the doctor on call that day wanted to talk to me about vaccinations. Dum da dum dum. When I declined them last weekend, the nurse told me it would be written in his chart so that no one would ask me again. But someone didn't want to take no for an answer. Apparently this doctor was concerned that I said no without reading the vaccine information sheets. Perhaps at least taking them home would have made it easier. Fortunately, this nurse knows me pretty well by now, and so she believed me when I told her that this was by no means a spur-of-the-moment decision, that I had spent probably as much time researching vaccines as I did writing my master's thesis, and that much of that research was in the package inserts for the individual vaccines, and in the CDC's Pink Book, which is infinitely more informative than the worthless brochures I was supposed to take home. The nurse said she wasn't surprised at all at my preparation and would pass it along. No one mentioned it when I got there tonight, but I wonder if it will come up again. What's a concerned parent to do? Play the game I guess. I'll worry about that when the time comes.

1. I'm grateful for Quinn's continued improvement.
2. I'm grateful Dorian and Faith and I could spend so much time outside on this beautiful day.
3. I'm grateful Kurt could ride his bike to work again, and also enjoy the day.
4. I'm grateful for the good friends I have and the love and support they give.
5. I'm grateful for the continued prayers and good thoughts coming from all over. You're all making a difference to one tiny baby boy.

2008-05-26T18:42:00.003-04:00

For the second year in a row, some robins have built a nest in the tree by our front door. We can see the nest from the window. They laid four blue eggs. We don't generally use our front door anyway, and especially now, so as not to disturb them. But visiters still come there. And when they do, Mama Robin flies to another tree and squawks at them, which is when we get to see what's inside the nest.

Today I went out the front door to get the newspaper, and as usual, Mama Robin flew away. On the way back, I peeked at the nest, and found three blue eggs and one very ugly baby bird. The others will probably hatch within the next few days. I found myself wondering what things would have been like if I had waited until now to hatch. I would have been 34 weeks pregnant, long enough for lungs to develop alveoli and surfactant. But, I don't know what it would have taken to get us that far. And, more importantly, speculating what might have been has never done any good. We are where we are. And all in all, it's not a bad place, at least today.

Quinn is back on the CPAP. Hope and pray it doesn't blow up his belly this time. But it's still an improvement. It provides far less pressure than the bi-nasal configuration, and his O2 has been in the low 30's all day. He's still getting 24 ml of milk every 3 hours, but now they are packing it full of calories. They don't want to give him extra fluid, because it buids up in his lungs. So instead of increasing his milk, they are increasing the number of calories, adding 7 extra per feed. I watched the nurse carefully measure out the milk and then add the little powder packets of human milk fortifier. It's a bit strange to watch a total stranger playing chemist with my milk. But of all bodily fluids to play with, I suppose that's one of the more innocuous ones. And Quinn sure needs it, with it's added extras. All the time he spent NPO has been hard on him, and the diuretics are no help either. He's been hovering at around 1500 g for more than a week. That puts him below the charts for weight. I'm not sure I agree with the idea that he shouldn't get fluid, but I don't have a strong enough case against it. It just feels counter-intuitive. And sometimes, that's all we have to go on in life. We're all feeling our way, and that's especially true for our family right now. I never did like improvisation, but it's unavoidable now. I hope I'm performing well.

1. I'm grateful for the holiday weekend we could spend as a family.
2. I'm grateful for those who have made this country what it is, and no, that's not tongue-in-cheek!
3. I'm grateful to live in a place where my children just have to look out the window to learn the facts of life.
4. I'm grateful for Quinn's improvements today.
5. I'm grateful I've actually kept up this record of this unique time in our lives. I'm sure it will be beneficial down the road.

2008-05-25T10:03:00.009-04:00

A whole lot of pics from yesterday.

Here's the crew.

Trying to get a size comparison with Faith's hand...

And Dorian's.

'

And a close-up for Quinn.

And because I can't resist, this is what Quinn will be coming home to. I followed the kids around the backyard with the camera yesterday. Doesn't Dorian look older than almost 4 in this picture?

And here's my radiant daughter. Literally. She's quite reflective in this shot.

Running off into the woods.

And talking to the fish.

It's strange to think Quinn will spend an entire season in the hospital. It will be almost too hot to play outside by the time he comes home. But it will still be pretty. I can't wait to show him the world outside.

2008-05-24T22:01:00.003-04:00

I got several pictures today, and not just of Quinn. But I'll have to postpone posting them until tomorrow. Something to look forward too.

We went to visit as a family today. I have gotten to the point where I can slip off my ID bracelet, but I forgot it today. As I walked into the NICU, the guy at the desk said "Do you need a new bracelet, Mother Fackrell? We can't let you in without one." Does anyone else find that strange? Someone that they know by name, but it's policy, and we live by policy. I complained about having to wear something all the time when I only need it a small portion of the time, and the woman sitting there said that if I have a better suggestion, they will listen to it. So that's a project for me. Come up with a better system besides semi-permanent branding.

Dorian and Faith were bouncing off the walls in the nursery, so they didn't last very long before Kurt took them back to the playroom. I talked with Quinn's nurse, another new one. His two primaries are on vacation, so he gets a string of new people for the next few days. His O2 was at 55% when I first got there, but that was the first time that day it had been above 40. Most of the day it was at 35. He has a flat spot on his head where he usually lies, and so they are trying to even him out, but he doesn't like the other side so much. Therefore, he needs more O2 on that side. Weird, huh? He's back up to full feeds too, and hopefully will stay that way. I was given some things to read about broncho-pulmonary dysplasia, which is a fancy way of saying he needs oxygen longer than they hoped he would. The reading material included an overview of having a baby at home who needs oxygen. Looks like fun.

The nurse said a nurse practitioner would want to talk to me about the Hepatitis B vaccine. I looked confused and said I had already declined it. She said it's because he's nearly 2 months old (by one way of counting at least), which means time for a round of vaccinations, and they use Pediarix, which is DTaP, plus inactivated polio, plus Hep B. I politely declined the vaccine, and we moved on. The NP did come to talk to me, but didn't try to talk me into it. She also wanted to make sure I had gotten the info about breathing issues, and asked me my least favorite question of all "How are you doing?" I usually avoid this question by saying "I'm here." Sometimes I want to take people by surprise and say "I'll give you a hint: my journey with this baby involved going to hell and back. Guess what: I'm not back yet." But I just told her I'm taking it one day at a time, and I was enjoying holding my baby that day. She said he has made great strides, and would continue to do so. Then Kurt and the kids rejoined us and we got some pictures. But as I said that will have to wait until tomorrow. I can't believe I'm up this late as it is.

1. I'm grateful I got more pictures of all of my kids today. We're a growing family.
2. I'm grateful we got to spend some time outside on a beautiful day.
3. I'm grateful I spent some time with friends tonight.
4. I'm grateful to know there are so many people willing to help and serve in times of need.
5. I'm grateful for what I've gained from these experiences.

2008-05-23T22:32:00.000-04:00

Just a quickie tonight. We had a long session of Diablo.

Quinn is progressing with feeds, going up 1 ml every feed, so hopefully tomorrow he won't need anything through IV. Oxygen isn't much lower, but apparently trying to improve both breathing and feeding at once isn't a bad idea. Right now, the priority is feeding, so we'll worry about breathing in a few days. That's what Kurt was told today. Keeping fingers crossed for continued progress. And now we're going to bed. Neither of us has slept well this week. Or for a couple of months for that matter...

2008-05-22T21:29:00.002-04:00

I'm just coming back from an out-of-body experience. Okay, it's not quite that dramatic, but I do feel as if I stepped outside myself tonight. I spent about an hour and a half being social in the NICU. Those who know me well know I'd have no problem being a hermit. I talk pretty easily to those I know well, but to those I don't, it takes some effort. So tonight was a bit strange. I was talking with a nurse practitioner, and then with Quinn's primary nurse. It was actually sort of fun, though the NP said she was a bit depressed after our conversation. We talked about all the things that are happening to our generation of children, how no one has a good handle on where it's all coming from or how to prevent it or control it. We just have to weigh risks and benefits for our kids, make a decision, and hope for the best. This is interesting it came up like that, because I had spent much of the day watching and worrying about Dorian, whether or not he is on the autism spectrum. And then I go and have a conversation about things being on the rise: autism, allergies, cancer, diabetes, you name it. Our kids aren't healthy. And that's if they are full-term with no other problems to start with. And since preemies are surviving at much higher rates today, that also affects the numbers. So, weighty topic, but then we moved on to lighter things, like the fact that this NP thought moving "way out here" (meaning 150 miles from where she grew up) was such a change and she's never been west of Texas. I named off the states I've lived in, much less visited, and she thought I was quite the world traveler. I suppose so, in a way. But only by comparison.

So, that was an interesting side note. In other news, Quinn is doing well. Kurt failed to mention to me yesterday that he is getting a round of Lasix, a diuretic. He figured since Quinn had gotten it before, it wasn't such a big deal. But it turns out it's different this time. Before he had gotten it in connection with a blood transfusion to flush out the extra fluids that come with that, so it was a one time dose. Now, he's getting it daily for about 5 days. They are hoping to reduce the fluid in his lungs. And it seems to be working. His nurse said his lungs sound much clearer today, and his O2 is down to 33%, the lowest it's been in a long time. So keep your fingers crossed that this makes a huge difference. I talked to the NP about transferring, and getting Quinn off his bi-nasal breathing apparatus is one of the main priorities for that to happen. The other thing that needs to happen is that he needs to be totally stable on milk, because the other hospital cannot do long-term IV nutrition. So that's what we're working toward. He is up to about 2/3 nutrition from milk vs. IV, and possibly as soon as tomorrow night will be off IV altogether. And then we watch to see if he keeps tolerating it. I'll cross my toes for that one.

1. I'm grateful to find understanding in unexpected places.
2. I'm grateful to be alive in the time of the internet.
3. I'm grateful for the friends I have and the support they give.
4. I'm grateful for the gospel in my life.
5. I'm grateful for the beauty of the world around me.

2008-05-21T18:44:00.004-04:00

Nothing like getting barked at for being too well-dressed. Kurt went to visit Quinn straight from work, wearing his tie and everything. When he got into Quinn's nursery, there was a tour of some donors for the new children's hospital going on in that room, consisting of several people dressed in suits listening to a lecture. Kurt went over the Quinn's bedside and put his hands through the doors of the isolette. A nurse from across the room said "Hey! What are you doing?" Kurt said Quinn was his son. By way of apology, she said "Oh, I didn't see your bracelet." Of course she didn't. I doubt she even looked for it. Even if she had, Kurt's purple bracelet lost almost all of its color while he was working on my car last weekend. That wonderful system they have in place that works so well for them...yeah, I've already complained about that one.

Overall, it was a less than stellar day for the nurses. Quinn's nurse all but totally ignored Kurt while he was there, spending all her time across the room with another charge, who by Kurt's description wasn't in obvious need. Quinn's immediate neighbor got discharged, and so we thought we'd get more attention, as he was a very high needs baby, and it often prevented us from talking to the nurses or from holding Quinn. But apparently, if you aren't screaming for attention, you don't get it. The nurse gave Kurt a minimal update, which included reporting that his eating was up, and he had been at 40 to 45% O2 all day. So, eating is up, breathing is down. Tomorrow, maybe they'll reverse. And maybe we'll get some friendlier nurses. And I'll be sure to come dressed in rags so they have no doubt who I am.

2008-05-20T20:50:00.002-04:00

It's been awhile since we've done any kangaroo care. I was excited to do that tonight. It was good for both of us. When I got there, Quinn's oxygen was at 45. By the time I left, it was down to 38. Bottom line, babies need to be held. He kept pulling those prongs out of his nose. It happened no fewer than 5 times while I held him, not that I blame him. I wouldn't want them shoved up my nose either. And the thing is I wouldn't notice right away, and his saturation levels wouldn't change. So he was definitely ready to turn down the oxygen. He's ramping his feeds back up. I'm hoping he stops blowing up his belly. He lost more than 50 g while he was NPO over the weekend. That's 3% of his body weight. I hope we can just look forward now. I left yet another message for the coordinator to look at what it would take to transfer hospitals. I know it won't be immediately, but I hope to at least get it in the works, so that when he's ready, we can do it.

In other news, Quinn is now the longest-term resident of that room. His other long-term neighbor just got upgraded to the PICU, pediatric ICU, so we're the veterans now. It's not a title I relish. It just marks the passage of time. This is day 47, half a season, one eighth of the year. It's a long time to live in a 2' by 3' space. And I don't need to point out the obvious that it ain't over yet.

1. I'm grateful I got to hold my baby today.
2. I'm grateful I could play in the sunshine with my older two kids.
3. I'm grateful for all those who support us, physically and through prayers.
4. I'm grateful we live in such a beautiful part of the world.
5. I'm grateful for the family I have.

2008-05-19T20:52:00.003-04:00

I think I'm going insane.

I've heard one interpretation of insanity to be doing the same thing repeatedly while expecting a different result. A scene in "The Bee Movie" illustrates that well. Barry the bee flies into the window and says "Ow! What was that? Maybe this time (bang) Ow! Maybe this time (bang) maybe this time (bang)...this time (bang)...this time (bang)..."

We go to the NICU everyday hoping Quinn has made some great strides in our absence. And what we find is that some things that were up are now down, and some things that were down are now up, and some things haven't changed. The exact details vary slightly, but what it all amounts to is that there are days when I feel like we are making no progress toward the goal of getting him out of there. Today is one of those days. Quick details are: feed is up, albeit veeerrry slightly and slowly to make sure he doesn't blow up again, oxygen is up, which means breathing is down, and now it appears that a hernia surgery is in Quinn's future. The thought of Quinn going under anesthesia again doesn't set well with me. More research is in my future.

See? A rerolling of the same dice.

"The sun'll come out tomorrow..."

It actually was pretty cold, windy and cloudy today. Partly cloudy for tomorrow.

1. I'm grateful written words can't always convey tone.
2. I'm grateful for Kurt, that we pull this weight together.
3. I'm grateful this experience has connected me to friends, old and new.
4. I'm grateful I have three great kids.
5. I'm grateful for lessons learned in my life, even the painful ones.

2008-05-18T18:14:00.002-04:00

Quinn is still starving. His x-ray this morning was "improved" but not good enough. There is still some air and thickened lining. So he's getting TPN again, and they will check again tomorrow morning and reevaluate. I was there this morning when they started rounds, but just before they got to Quinn, they ran off to another nursery and hadn't come back by the time I left 45 minutes later. I called this afternoon to get the update. And the PA I spoke to told me everything I just described and then said "Okay?" No, it's not okay. What am I supposed to say to that? Okay as in I understood the words you said? Okay as in this is a good situation? I asked about preventing this scenario in the future, since this is at least the second time Quinn has had this issue, and she said there's really no way to prevent it, that they just watch as they give him food again. They don't know why babies suddenly stop tolerating their feeds. That doesn't make any sense to me at all, but saying that out loud to her wasn't getting any further toward a definite answer, so I felt it wasn't worth pursuing. I did ask her why they would wait until tomorrow morning. Yesterday, they were checking every 12 hours, which I thought was a bit of a long stretch, and she said it was because they don't want to do too many x-rays, you know, radiation exposure and all that. This is what I love about not talking to the same person twice. (note: heavy sarcasm) I was the one who, when he had his very first x-ray, expressed concern that he not get too much radiation exposure, and and surprise that they didn't have to ask us before doing something like that. But, I'd never spoken to this person before, so she didn't know that. And it's not that my position is changed, it's that last night I was told that their evening evaluation was based solely on his girth measurements and overall appearance, so I was wondering if they were planning on doing any of that tonight, or just leaving it all until tomorrow. And it looks like everything will be left until tomorrow. She said he's a big enough baby that it's okay that he only gets IV nutrition for a little while. A whopping 3 lbs 5 oz is big enough to do that I guess. And of course he's lost some weight over the course of the last few days. Okay, enough complaining. It's not doing me any good.

2008-05-17T19:38:00.002-04:00

My baby is starving. That is so frustrating. When we got there this evening, his nurse commented he's been chewing on his fists and pacifier a lot the last few hours. But he has to be NPO until rounds tonight so they can all discuss it as a group, is what the nurse practitioner said. I know they don't HAVE to wait until rounds to change orders. That's definitely been done in the past and they didn't have to wait. So I don't know the real reason why he can't be fed, but he is hungry and ready to eat again. They took another x-ray this morning and there was still a small amount of distention, but a definite improvement over what it was last night. So, if another improvement has happened since then between rounds, which happen every 12 hours, we have to wait until then to make the change. Arghh! Just feed my baby! You can't starve a 3 pound kid! He is getting IV fluid, but I'm sorry, no man-made product is superior to mother's milk. I've made plenty of it, now let's use it.

We also need to take our camera more often. Kurt used the NICU's camera and got the cutest picture of Quinn smiling, but they don't email photos from that camera. They just print them off and send them home with people.

And another sort-of milestone. Quinn is no longer the smallest baby in his nursery. Just today a 26 weeker was admitted. Quinn looks big and mature by comparison. I still can't believe I was supposed to be 32 weeks pregnant by now, complaining about petty things like indigestion, and instead I have a baby in intensive care. I still hope to wake up from the nightmare sometimes.

2008-05-16T21:55:00.002-04:00

Cars are wonderful things, when they work. My car, which is on it's last legs anyway, was in desperate need of new brake pads. And we tend to cram everything we need to do into Kurt's days off as it is. Sum it all up, and we didn't make it to the hospital today. It sucks, but so does much of what has happened to us this year.

I had really hoped to see Quinn today after his readjustments to the CPAP. He's back on IV nutrition, and has been NPO most of the day. I hate when this happens, but I saw what he looked like last night, his little belly totally swollen up and looking uncomfortable, so I understand why. He also got a blood transfusion today and a dose of Lasix to clear out some fluid in his lungs. He had had low hematocrit a few days ago. Hopefully all this translates to better breathing and eating. The nurse practioner I spoke to earlier today said they would hold off his food and see if the swelling improved. If not, they would look into causes for infection. The most likely cause of the swelling is the CPAP, which makes sense timing wise. And he wasn't acting sick. He was still alert and active about the same amount of time as usual. As I've said before, all this means is that we're asking super human things of him. And in general, he is responding well. He just gets tired of being super human now and then.

today's list:
1. I'm grateful to everyone who reads and comments here. I read and appreciate all comments.
2. I'm grateful for all the love and support from all around the country.
3. I'm grateful for my relationship with Kurt, that our friendship and love has been a source of strength and support for us and our children.
4. I'm grateful for our bodies' incredible ability to heal. I'm feeling better all the time, and Quinn is making miraculous strides.
5. I'm grateful for my love of reading and the ability to write. This record wouldn't be possible without it.

2008-05-15T21:50:00.002-04:00

A number of new things today. First, a milestone. Quinn has officially doubled his birth weight! He was born at 750 g and is now 1500 g, 3 lbs 5 oz. He's actually starting to fill out the preemie sized onsies. I thought it would never happen. And he looks more like a small newborn now and is noticeably heavier.

Another change and one Quinn initiated: he's back to the regular CPAP. He didn't like the prongs that went halfway down his windpipe, so he pulled them out. Time to try something else. That happened last night. Now he has a mask over his nose. That means half the air pressure of the other configuration, which is a step in the right direction. The advantage of the long prongs however is that they deliver the extra air beyond his esophogus. Now with the mask over his nose, some of the air ends up in his belly. He's had issues with this in the past and now it's back. They actually held him off one of his feeds today because his belly was too full of air. If it continues, they will have to put in an IV and restart IV nutrition. I'm hoping that doesn't happen, but it's looking likely. I saw him tonight and he was obviously uncomfortable. His belly looked like a balloon. Poor kid. Pray for good motility so that he can keep eating. He is doing so well with his weight gain I hate to see that slow down. I finally got to hold him today. I hadn't since Saturday. I was hoping the change in positions would help all the air move one direction or another, but no such luck. He looked no better when I put him back 45 minutes later than he had when we started. I'm hoping it's just an adjustment period.

1. I'm grateful for any and all improvement.
2. I'm grateful for the beautiful weather we've had.
3. I'm grateful Kurt has a 3 day weekend.
4. I'm grateful I can be a stay at home mom.
5. I'm grateful I've documented so much of our experience there. When this is all a distant nightmare, it will remind me how strong we became through it.