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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.