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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

Looking more animated by the day.

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

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

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

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


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

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

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

Little brother is unimpressed.

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

We had a good week. Notice something missing?

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

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

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

Bad blogger! Bad blogger!

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

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

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

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.