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.

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.

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.

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.

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.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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.

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.

Kurt had a busy day downtown today. Quinn is doing well, down on oxygen and still doing okay. He had yet another new nurse today, and one of his primary nurses just went on vacation. So that means a string of even more new nurses. You would think eventually the rotation would come back around to people who have taken care of him before. I just don't get it. And really, I don't want to get it. I just want my baby home. But anyway...

Kurt met with a urologist to discuss Quinn's hypospadias, which means his urethra opens further down the shaft of his penis than usual. We came up with a list of questions for him and the answers weren't what I had hoped. The normal course of action for treating hypospadias in this country is to circumcise and use the foreskin in the reconstruction of the urethra. The US of course stands out in the non-Jewish non-Muslim world as having an extraordinarily high rate of circumcision. World-wide the circumcision rate is around 15%, which means there are other methods of treating this condition. Countries other than the US that actually appreciate the value of the entire body use a different method that doesn't involve circumcision, and uses tissue from the inside of the cheek instead, with good results. This doctor said that yes, they sometimes use the inside of the cheek, but only if the foreskin doesn't provide enough of what they need. I'm sort of glad I wasn't there. He used the words "redundant tissue not worth saving" in describing the foreskin. At best I would have laid into him for such a claim, at worst I would have wanted to slap him. Redundant tissue? Who are you to decide what part of the body is or isn't needed? If it's there, it's there for a purpose, and I don't think we are justified in cutting it off without a damn good reason. And if there is another method available that will preserve the foreskin, I don't see why we shouldn't go that route and leave as much of his body intact as possible. This doctor also said as far as pediatric urology goes, this practice is it for the region. If we wanted a second opinion, which I would do regardless of what he had said today, we would have to go to NYC or Boston, with no guarantee of different answers. The good thing about all this is that none of this is imminent. It most likely won't even happen this year, so we have a lot more time to think about it and talk to other people about it. It's not preventing him from doing anything normally right now, so it's a back burner issue. And I hope when the time comes to address it in the future, we make the right choice. Don't we all wish that in our parenting.

We take the good with the bad. Quinn's oxygen was up to 45% today, and apparently was for most of the day. Oxygen is considered a drug and has risks as well as benefits. The subject of my prayers lately has been to heal Quinn's lungs, so that he doesn't need as much oxygen, or all the equipment he has. I'm hoping that improves. But there was also good today. For the last 2 weeks or so, Quinn hasn't done nearly as well on his back as on his belly, requiring more oxygen when on his back, and today he spent about equal time on both, and didn't need extra oxygen. So maybe something is improving. He is 1445 g, about 3 pounds 3 ounces. So he's definitely growing. He had his eye exam today, and there were no surprises, follow up in 3 weeks. I didn't get to hold him today. I thought I was planning around his feeds, but evidently he got off his schedule somewhere along the way, and was being fed an hour later than I thought he would. That means neither Kurt nor I have held him since Saturday. I held his hand and talked to him, but that's not nearly the same thing. I talked to his nurse-yet someone else who hadn't seen him before-about transferring hospitals, and she said she would leave a note for the case worker to call me and talk about it. She said it's something they do on a regular basis, once the babies really don't need their level of care, so they can have more room for those who do. She also said the case worker is very proactive about getting babies moved, and if we haven't heard from her, it's probably because Quinn isn't ready. I had figured that much, I just wanted to get the ball rolling to make sure people knew it was something we were very interested in. I met a nurse tonight who said she is good friends with Quinn's primary night nurse, whom I've only spoken to on the phone. She said this nurse just loves Quinn, and always makes sure she works with him. She's on vacation now and told her friend to take good care of him. It hit me pretty hard that this person has spent infinitely more time with my baby than I have. I mean, I'm glad she likes him and gives him some stability in how many people work with him, but babies belong with their mothers. And my arms and belly are empty of him.

Same old same old today. Still getting 26 ml every 3 hours, still in the 35 to 40% oxygen range. Kurt didn't get a weight while he was down there today. He did however run into the nurse I had my fun discussion with yesterday. She was taking care of another baby in the same nursery today. She looked over at Kurt and said something like "That baby of yours. He knows what he wants and how to get it. Watch out! He's going to be a handful!" Kurt doesn't take bait nearly as easily as I do, which is one reason we are a good match. He just smiled and nodded and ignored her for the rest of his time there. But he talked about it plenty when he got home. What is wrong with knowing what you want and how to get it? What does that nurse expect of these babies? That they will just lie there quietly, and then maybe tentatively get her attention and say "Uh, pardon me, I don't mean to bother you, but if it's not too much trouble, would it be okay if I got fed now?" The ones who don't make trouble are preferred, in any group situation. All I have to say is well-behaved people rarely make history.

I need to get my lists going again.
1. I'm grateful I know who I am and where I want to go and how to get there.
2. I'm grateful I know that I am worthy of being loved and receiving blessings.
3. I'm grateful I have the opportunity to raise children and help them realize their worth as God's children.
4. I'm grateful I got the resolve to document this time on our lives, both for immediate therapeutic reasons and future reference.
5. I'm grateful all in our family continue to do well and improve.

Note to self: Do not discuss birth philosophies with NICU nurses. But more on that later. Quinn finally broke the barrier. He is 1330 g, 3 pounds officially! And looking more like a baby all the time, not an alien. He's up to 26 ml of milk, with 4 added calories. He's still hovering in the 35 to 40% oxygen range, but his pressure is down a tiny bit. I was there during rounds this morning. They discussed an electrolyte supplement. He had already been getting sodium, now they want to add potassium as well. Other than that, no surprises, nothing major, just watching him grow. I didn't hold him this morning, since he was eating and likes to have lots of desats while that's going on. He does have some reflux, but not a big surprise there. We are asking super human things of his digestive tract. And he's responding pretty well overall.
A close up.

And big brother and sister watching from the rocker.



Now for my conversation. It started when the nurse commented that she thinks she has Quinn's personality pegged, that he likes to be in charge. She said he'll be a troubled teen, that my other two kids are angelic, but this one will be a challenge. Oooookaaay. Then she said "The good thing about all this is that the babies don't remember a damn thing. You will, but he won't." I was shocked. I told her I don't for one minute believe it doesn't leave an impression on them. That surprised her. She said she could never be a PICU nurse, where the kids would beg her not to give them an IV or whatever. I was having a hard time being objective about this. So, just because a baby can't complain in English means it's okay to do these painful things to him? I said it might not be concious memory, but yes, I do think that everything that happens to us leaves an imprint on us somehow, and especially at this tender age. I didn't say it then, but that belief is one of the main reasons I wanted a homebirth, to have a gentle and peaceful beginning to life, because I do think it leaves lasting impressions. The conversation was put on hold while she answered a phone call. By the time she came back I was saying my goodbyes to Quinn and getting ready to leave. Then it started again.
Her: Are you okay?
Me: (confused) yeah...
Her: I gathered you're kind of a reserved sort of person.
Me: yep, that's right. I'm doing okay. (thinking: leave me alone)
Her: (a long explanation about how Quinn is overall okay, doing the typical preemie thing and is doing what is expected. She said she wished the monitor wasn't as visible to parents, that only the nurses would get to see it so the parents wouldn't become obssessed with it.)
Me: Yeah, it's like it is in labor, when everyone gets caught up watching the fetal monitor and forgets about the mother herself.
Her: Yep, that's about right.
Me: That's one reason we were planning a homebirth.
Her: (jaw sagging) You were planning a homebirth?!
Me: yes, and I got just about as opposite a birth as I can come up with to the one I had planned.
Her: yes, but a homebirth!?
Me: I detest hospitals.
Her: Okay, so do I, but...
Me: And I firmly believe that many of the things that go on in a typical labor and birth are inexcusable.
Her: That's true. The c-section rate is out of control. But, I'm a NICU nurse and homebirth just wasn't and option for me. I mean, I could have, but knowing what can happen, I wouldn't have. We do get homebirth trasnfers here, ya know.
Me: yes, and you see the ones that go wrong. The vast majority go right, and have no need of the NICU. Most people don't need a hospital.
Her: what, for birth or in general?
Me: Both.
Her: Uhhhh, I don't agree.
Me: Most people don't.
Her: My sister has cancer now.
Me: That's not most people.
Her: But it is now. One-third of women have breast cancer now.
Me: (thinking, holy math, Batman) And what are we doing to prevent it? We talk of finding a cure, and raising money toward that end, but who is looking for ways to prevent it to begin with?
Her: You're right, that's why I don't feed my kids the way my parents fed me.

At that point she had to settle a crisis with her other charge and I made my escape. I shouldn't have brought up my plans for homebirth, but I felt slightly baited throughout the whole conversation. Everyone else to whom I've mentioned our foiled plans has been very respectful about it, and in most cases it helped to understand us better and our parenting philosophies and hopes for Quinn's hospital stay. But this was a little over the top. I mean, hide the monitors so the parents don't see them? How patronizing is that? "Don't worry your little head about it. Trust us." And babies don't remember things? That is the justification for a host of atrocities perpetuated on babies, and I find it sickening. It was only fairly recently that surgeries performed on babies included anesthetic. They used to be done using only a paralytic drug. And then there are baby boys. I won't fully go into my feelings on routine circumcision, but suffice it to say, it won't happen on my watch. If my sons want to do it later, it's their choice. I won't change their bodies for them and subject them to unnecessary pain. These are just examples. Babies are human beings. Their bodies may be immature, but I don't believe their spirits are any less mature than ours. I believe they deserve respect. While I was conversing with Quinn's nurse, the other nurse in the room was speaking sharply to her charge, who was crying and only calmed when she was held. "I just can't hold you all day." The NICU is not a happy place. I cannot wait for our time there to be done. And may it never happen again.

Just a quick update tonight. Kurt and I have a date with Diablo (computer roll playing game). I did take pictures today, but as usual, I have to download them on Kurt's computer which isn't nearly as tractable as mine. That will be a good Sunday project.

Quinn had yet another new nurse today. Everyday I've been there this week it was someone new. Very frustrating. He's up to 24 ml of milk, with 4 added calories. His weight is 1330 g, about 2 lbs 15 oz. Maybe tomorrow we'll break the 3 pound barrier, about one week after I thought it would happen. They tried to wean him off of some air pressure, and he ended up needing more oxygen, so the air pressure is back up a little, and the oxygen down a little, sort of splitting the difference. I held him skin to skin for about 45 minutes, and he had an apnea episode right at the end. It wasn't nearly as scary as the last one I saw. I didn't even realize that's what was happening. Still not something I like to see. His older brother and sister got to see him tonight too. But they can only take so much of that, and then Dorian announced he wanted chicken nuggets. We told them they'd be getting fast food for dinner, and it was the highlight of their day. Simple joys.

So that cap of maximum intake for Quinn that was 17 ml every 3 hours? Apparently it doesn't apply anymore. A more recent number was 20. That doesn't apply anymore either. He's going up to 23 ml per feed tonight at 11pm. They are stuffing this kid. Eating is almost literally all he does. He gets fed every 3 hours, and they push through is feed tube over the course of one hour. So that's two hours between the end of one feed and the beginning of the next, and I'm sure most of what he's doing in that time is digesting. Now, he isn't my first kid, and I breastfed my other two as well. I do remember feeling like they were always attached to me in the beginning. But I never kept as careful track of when I fed them as the NICU does. It does seem strange to see it all laid out like that. And it's making a difference. He's up 50 g from yesterday, but still not quite at 3 pounds. It's like an insurmountable barrier. Maybe tomorrow. And maybe tomorrow I'll get an updated photo on here. Quinn is 5 weeks old today. Hardly seems possible.

And after 5 weeks, I am miraculously feeling like I might not be an invalid for the rest of my life. I went riding tonight. Okay, I confess. It's not the first time since Quinn was born that I've been on Teo. The other time was 2 weeks ago when I went to the barn and hopped on bareback and made a very slow circle around the barn. I had just been itching to ride again. It seems like forever since we did this...

or this...

or even this.

All of those are from last fall. I did ride a bit during this pregnancy, just as I had my others. With both my other kids, I rode until 7 months and then got back on when the babies were 6 days old. This time, the last time I rode was about a month before Quinn was born, and then 3 weeks after is when I got on for the first time. And no, I don't think my riding had anything to do with my bleeding. I don't think I'll ever fully know what initiated that. I'm just glad to be able to do things I used to again. Riding has been such an important part of my life. I got Teo when he was 4, and I was 14, just starting high school. He has been the constant in my life through high school, college, grad school, moving to 3 different states, different relationships, getting married, and having 3 kids. And yes, he moved with us each time we went somewhere else, even across the entire country. Four days after Quinn was born, Teo had his 17th birthday. We've been together for nearly 13 years. Kurt at first was a little hesitant that I declared I was a package deal, but he saw what being with Teo does for me. It's a way for me to get centered again and ready to face the world. Kurt has been known to push me out the door to the barn when I've had an especially hard day. And when I got home tonight, he took a big whiff of my hair and said "You smell horsy." It's a smell he associates with me, and he hadn't smelled it in a long time. That may sound strange to those who are offended by the smell of horses, but smells are powerful in evoking emotions and memories. When I was in the hospital and Kurt and the kids came to visit me, just their smell made me miss home so much more. I'm sure I'll forever associate the smell of hand sanitizer with our NICU experience. For better or worse, these things imprint on us.

1. I'm grateful for my continued recovery, and my health in general.
2. I'm grateful for the health of my family members. Health is so taken for granted.
3. I'm grateful for Teo and the relationship we've shared over the years.
4. I'm grateful for an understanding husband who wants his family to be happy.
5. I'm grateful for Quinn's continued improvement. We'll have him home yet.

Things are looking good. Quinn is eating 20 ml every three hours now, with a little extra growth formula to bring the calories up from 20 to 22. We're going to pack on those ounces yet! And I hope it's soon. He has been sitting at just below three pounds for nearly a week now. No one is concerned about it but me, so I guess I'll try to relax about it. (haha, relaxed mom, that's funny.) His oxygen needs are down a bit as well, from 30 to 28%. Right next to Quinn is a baby born one week ago at 34 weeks. I watch this kid in facsination as he has no supplemental oxygen at all and yet his oxygen saturation is always near 100%. Quinn still desaturates on a regular basis, meaning he dips below 80 to 85%. All a part of being too small. Hopefully we are outgrowing that.

I talked to a few people today about transferring to a different hospital. What I found is that yes, that is done on a regular basis, and it turns out the hospital closest to us would be a pretty good choice eventually. The two nurses I spoke with didn't know exactly what the criteria would be, but they knew that it's a level 2 NICU and could handle ventilators and all sorts of IV's and low birth weight babies, and that a couple of doctors go to both hospitals, so there might actually be some continuity there. That will be something for the future, and I'll most likely have to ask again during business hours to get ahold of someone who would know more. I was there this evening because we are trying a new regime in an effort to reestablish some narmalcy for our older kids. There was enough unpredictability in their day as to when and where they would spend their time while we went to the hospital that it was taking its toll on them. So we're now going down one at a time, and recreating as best we can the routine we had before everything went south with my pregnancy. It's only been two days, but I've seen an improvement. I hope the trend continues.

It's really starting to worry me that I can't count on a consistent word from anyone at the hospital. I called this morning, trying to plan the day, on the off chance that someone knew when the IV would be removed this afternoon. The nurse didn't know exactly, but she did know that she had been told to withhold Quinn's 2:00 feed, so she guessed it would be sometime between 2 and 6. I asked when we might know more specifically, and I sure remember her telling me she would call when she knew more, that they would get at least an hour's notice and she would let me know. I never heard from her. Fast forward to 5:00 when Kurt got home from the hospital, and he said Quinn had had his IV removed at noon, that it wasn't his 2:00 feed he didn't get, it was his 11:00, and the nurse told Kurt she would have called me if he hadn't had the procedure before she went home from her shift this evening. I won't say who misunderstood whom, because that would be almost impossible to determine at this point, but I'm getting very tired of not being able to count on people down there. It's to the point where I've done some cursory research on other hospitals in the area, places that might have fewer doctors and nurses, so that there would hopefully be more consistency, as well as being closer to us. And what I've found isn't all that encouraging. Very few of the hospitals in the area are forthcoming about their facilities. With some ferreting, I've only found two that say they have a NICU at all, and only one of those admits what level it is, meaning what care it can provide. I hate hospitals.

On a more encouraging note, Quinn is doing well. He handled the procedure just fine and now has one less tube attached to him. They've also increased his feeds again, and said the goal now is to get him to 20 ml per feed. That's another number that keeps changing, how much he should be taking in, but I've already expressed my opinion on the seeming fickleness of it all. But he continues to improve, and in the grand scheme of things, that's what we're trying to accomplish. I have to keep that in mind, no matter how frustrated I get with other people.

I have a son. He's my son. That might seem like a strange statement. I half joke that the only proof I have that Dorian is my son is that I remember giving birth to him. Other than that, he is his father's son. Baby pictures of the two of them are strikingly similar, and their approaches to life bear a lot of resemblance as well, and he has always preferred Kurt over me. Well, now I have have a son too, and here's why. Quinn pulled his ventilator tube out himself last night. He was done with that particular treatment and made the executive decision regarding his own care. And he's been doing very well ever since. He's back on the CPAP and about 30% oxygen and a whole lot more active than he has been for the last week. And he is still increasing in feeds, up to 15 ml every three hours. Tomorrow, they will start supplementing my milk with human growth factor, to pack on the calories, and eventually add calcium and phosphorus, since this is the time period in the womb when babies typically get the most of that.

I got a call at 11 a.m. this morning from a pediatric surgeon resident asking permission to do the surgery this afternoon to remove the central IV line. He said they would take him to the OR just like last time and put him under and so on. I said I hoped they didn't plan to use the same protocol they did last time, which obviously was too much for him. This doctor wasn't aware of that, and said he would look into it. I asked when the surgery would be, and the only answer he could give me was "this afternoon." He said he'd call back when it was more certain. At 1 p.m., having not heard back, I called and no, no one knew when exactly. About an hour later, the same resident called me back and said they were rethinking using general anesthesia, given Quinn's history, and would like to try it using local anesthetic and morphine. But he still didn't know when. Kurt and I went forward with our plan to visit in the afternoon. When we got there, his nurse said the surgery would be in an hour, in his bed, under local anesthesia and morphine. That surprised us, but, having learned by sad experience that time is relative in intensive care, we didn't count on the surgery actually taking place within that hour. And you know, sometimes I get tired of being right. But we spent that hour with Quinn, watching him in his new more active state, which actually resembles more closely the baby I remember being pregnant with. He kicked me night and day, just like his older brother, unlike his older sister, who slept for days on end. We left after more than an hour, and there was still no sign of impending surgery. But we were promised that it had to happen today, before the surgeons went home. Literally everyone we had talked to today had talked about the portal for infection that an IV line is, especially a central line, and it was important to get it out as soon as possible.

Drumroll please...

I just called to see how Quinn is recovering from his procedure. It turns out he's doing quite nicely because there was no procedure. It's now going to happen sometime tomorrow afternoon. I'm just grateful Quinn is doing as well as he is. And maybe it's a good thing because it will give him another day off the ventilator before having something major happen to him. These are the bright sides I'm looking for in an otherwise frustrating exchange.

I need to be more grateful today.
1. I'm so grateful to everyone who has taken care of my older kids so Kurt and I could spend time with Quinn. It's a huge sacrifice for anyone.
2. I'm grateful for all the prayers and fasts in our family's behalf. I can't think of another baby who has had more prayers for his well being.
3. I'm grateful for the return of warm weather and the beauty of the world around us.
4. I'm grateful for Dorian and Faith who find such wonder in their world.
5. I'm grateful for my faith in Jesus Christ, and for His atonement which covers sorrows as well as sins.

Communication is key. Yesterday, Kurt was told by the doctor making rounds that Quinn would be getting his IV line out "by midnight," which I not only thought was a strange time, I thought it was strange that it was happening at all. It seemed too soon to me. When I went down today, I asked when it would come out and got some blank looks, followed by comments like "it's too soon, we want more time after going to full feeds." And while it doesn't surprise me that not everyone involved in Quinn's care is on the same page, it does very much disappoint me. This is a large teaching hospital and continuity of care is very hard to come by. I'll just try not to worry that one of these miscommunications might turn disastrous.

Quinn did have his other procedure done today, and apparently directly before it, he completely and totally emptied his bowels. They went ahead with it anyway, which irks me a bit, but I wasn't there to say no. And surprise surprise, it was normal. An hour later I got to change a poopy diaper, so hopefully he's working things through on his own now, and that will relieve the pressure on his lungs. He is still intubated, and likely will be until his IV line is out, which I still don't have an idea when that will be. I had a hard enough time pinning someone down this morning who knew what was happening today, and when I did, the answer was "I don't know, we'll call you when we do." I guess I'll do the same thing tomorrow. Life by the minute.

A not-so-encouraging update today. Quinn is back on the ventilator. He had a scary apnea episode early this afternoon and didn't start breathing again on his own, so he is intubated again. :( Supposedly it might help reopen some of his collapsed lung sacs, and then when he goes off again, he will breathe more easily and have better oxygenation. I'm just wondering about my conversation with the doctor yesterday when he said he wasn't concerned because Quinn isn't putting forth a lot of effort to breathe. Hmmm. But this would have happened anyway, and for a more encouraging reason. Quinn will have his central IV line removed tomorrow because he no longer needs IV nutrition. It's all breastmilk from here. Yay! And since he had a line starting in his neck and needed surgery to get it in, it's surgery to get it out again. I'm praying for a better anesthesiologist this time. No more overdoses! I can't take it anymore! He's also scheduled for a barium enema. Yummy. The concern is that he is taking in more than he is putting out, and where is it all? Is there a blockage of some sort? Some is getting out, but apparently not enough. And the theory is also that this will be therapeutic, and clean him out. I have great reservations about this, but I don't think I have a strong enough case to decline it. I guess I feel that if he is pooping, which he is, and he's not uncomfortable, which he's not, then it shouldn't be a big enough problem to warrant such an invasive procedure. But what do I know, I'm just a hormonal mother. Hoping for the best, from everyone involved.

Kurt and I woke up today and said "It's our anniversary." "Yeah." "I didn't get you anything." "I didn't either." "Alright. Happy anniversary." A very strange year. We did go out to dinner earlier this week to celebrate, since we wouldn't be going out on a Sunday, but times aren't what we're used to, that's for sure. Several times since things started going downhill, I've told Kurt I wanted to run away, not to a place, but to a time. And the time I keep coming back to is when we were newlyweds. This is a bit ironic, because two weeks after we were married, we moved to Corvallis, Oregon to start grad school. I made no secret that I hated Oregon. We didn't know anyone there. It rained 9 months out of the year, with no snow to break up the monotony. Shortly after we moved there, I started getting horrendous headaches the could put me out of commission for a day or two. And most of all, it wasn't Utah. Despite the fact that I was born and raised in California, I had really enjoyed my time in Utah during college and wanted to stay there. So why would I want to go back to that time? I'm not entirely sure, but there is something so appealing about the time when Kurt and I were first starting out on our journey together, with everything before us, nothing determined, optimistic about what lay ahead. But whatever we've done together in the last six years has made us the people we are, and made our marriage as strong as it is. I wouldn't trade that. I just have to keep reminding myself that I'm grateful to be who I am, with the knowledge I've gained during these times of trial. If I regret my past choices, I regret the person I've become today. Come what may, we can handle it together, as we've done so far.

I should have known it, but yesterday was one of my less optimistic days. I went to the NICU alone, as the older kids were each having a bad day. When I got there, there was some steril procedure going on for one of Quinn's neighbors, so I spent the time talking with a nurse practitioner. She went over the results from the afternoon's imaging. The echocardiogram was normal, so the PDA is closed. They also did a head ultrasound looking for evidence of oxygen starvation and that was also normal. She said it looks like there might be some scar tissue in his lungs, which is to be expected with the amount of pressure needed to keep them inflated, as well as the level of oxygen, because oxygen can actually be damaging in high concentrations. Supposedly this scar tissue will go away, which makes me wonder why it's considered scar tissue. She wasn't encouraged the he has deteriorated with regard to his breathing support. He was 8 or 9 days old before he needed any oxygen at all, and then it was only around 25% (atmospheric oxygen is 21%). Now he hasn't been below 38% in more than a week. And he's been having more apnea. She wasn't all that concerned about that however. She said it's not unusual with the increasing feeds that he's getting. Increasing feeds triggers reflux, which can trigger apnea, even in a full-term baby. And he has been steadily ramping up his feeds. He's up to 10 ml per feed now, and gaining quite a bit, although she said he was gaining too much. *bangs head against wall* Can he do anything right? She said "he'll just be unique", and I said "Just like everyone else." Because really, how easy is it to compare one preemie to the next? They are all born at different gestational ages, and the reasons they are born so early vary quite a bit and impact what problems they'll have. She conceded the point. Score one for me.

I went in to see Quinn after this, feeling totally let down. The nurse said everyone and their brother had been in to mess with him that day with all the imagin tests, and he was tired. I didn't want to traumatize him anymore, so I just sat with him, wondering what we were doing to him. He had an apnea episode just as I was leaving. It scared me, but the nurse didn't seem too fazed by it. I watched as his heart rate dropped below 100, and his oxygen saturation dipped into the 50's and said come on, breathe. He recovered fine, but it made my already dismal mood that much more vivid. All the way home, I wondered if we were doing the right thing tormenting him like this. This won't be a popular viewpoint, and I've hesitated to put it out there, but this is my journal, a record of my thoughts, and this one has been on my mind several times in the last month. I wonder at what point death is a welcome option. I hate watching babies suffer, and for some poor kids, all they know of this earth life is the fear and chaos of the NICU, and it is not a happy life in there. Such were my thoughts for most of the day yesterday.

Today, by contrast, was much more encouraging. When we got there, a doctor came to talk to us, and I felt tons better after that. He said he wasn't overly concerned about the oxygen level, because Quinn doesn't put a lot of effort into breathing. As we spoke, we watched Quinn sleeping peacefully, and yes it was true, he didn't struggle for breath at all. The doctor said if he were huffing and puffing, then he would be more concerned, but he's not, and he's also growing and gaining weight, which a baby putting all its energy into breathing wouldn't be doing. He also said they did a blood test to check renal function and it was normal. So once again, I can say his main problem is he's too small, and he is rapidly outgrowing the problem. He is just a few grams below 3 pounds now. It hardly seems possible, but he is packing on the ounces. He looks more filled out, without so much loose skin, and he's looking more like a regular newborn everyday. He also feels more substantial when I hold him. I got to kangaroo him for about 45 minutes right after he ate. Someday I'll be able to hold him all day if I want. I need to invest in a better sling than the ones I have. One doesn't fit me and the other is a wrap and is hot in the summer. Let the shopping begin.

My gratitude list today
1. I'm grateful for good news, of any kind.
2. I'm grateful I could spend so much time with Quinn today.
3. I'm grateful for Kurt. We'll have our 6th wedding anniversary tomorrow.
4. I'm grateful for my continued improvement. I may heal yet.
5. I'm grateful for all my children.

Father-son bonding time.



This is the new apparatus. It doesn't go in his mouth, it just looks like it from this angle.

Quinn continues to do well with feeds. He gets ramped up every 12 hours, so he's now up to 7 ml per feed. The upper limit is 17, so he has a ways to go. I'm having a hard time picturing his stomach being that big, but maybe that's the point of slowly increasing it, stretching it out somehow.

The NICU called this morning, and as usual the person I talked to prefaced things by saying nothing dire was going on. But I still get a little fluttered when I see it's the hospital on the caller ID. Anyway, she asked about the Hepatitis B vaccine, since Quinn will be 30 days old(!) this weekend. I declined it, and that was no big deal. Whew. Then she said he will have an image done of his heart sometime midday or early afternoon. The concern now is that his PDA is open. This is a duct that's open before birth and closed after. It was checked when he was a few days old and was closed, but apparently that isn't necessarily a permanent situation. If it's open, that would explain his increasing needs for oxygen and breathing support. His blood pressure has also been a bit low (last I looked at it, it was something like 52/34!) and that could also be explained by this condition. So we'll see how that goes. We'll go in sometime in the early evening, and hopefully by then they will have the results of this imaging.

The good thing about having the worst day of my life so recent and fresh in my memory is that every day since has seemed much better by comparison. It still varies day to day how optimistic I feel about our situation. Some days I'm able to say "This is just a bump in the road. We'll get through it and move on with our lives and everything will be okay." Other days, I'm reminded how fragile Quinn is, and I have to wonder what life would be like knowing that every family picture is incomplete because someone is missing. I'm not sure yet what kind of day today is, but I find myself reliving that day 4 weeks ago when it felt like our world was crashing down around us. I hope the old saying time heals all is true.