I hate getting my hopes up.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

These are from Saturday. More father/son bonding.

And the obligatory big brother and sister shot.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Okay, two biggies today, both of them good.

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

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

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

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

Getting ready to nurse.

Switching sides.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And here's one from tonight.

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

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

Mama bear, hear me roar.

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

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

WARNING: venom ahead. Reader discretion strongly advised.

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

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

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

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

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

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

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

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

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

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

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