Friday, December 31, 2004

Barring some unforeseen event in the next couple of hours, Will is going to enter 2005 in better condition than we would have expected this morning. After doing well yesterday and into the evening, he needed to be tapped at 2 a.m. That helped for a bit, but by the time we came in to see him late this morning, he was needing a lot of oxygen and not really responding to much. Around 6 p.m. they tapped him again, and the results were dramatic and immediate. Now, he is needing only about 40 percent oxygen (as opposed to 80-100 much of the morning and early afternoon). Suffice to say, the octreotide, contrary to early hopes, hasn't kicked in yet. They've increased the dosage a couple of times, and we're hoping that it will start doing what it is supposed to do. It is clear that when he doesn't have that fluid around the lung, he does really well.

Over the weekend, we'll probably spend a considerable amount of time with Will at the hospital. So, posts might be infrequent. I know that people get concerned when they don't see something for a long while, but this time it will just mean that we're taking advantage of the weekend to be with Will.

Some people have asked how Mary and I are doing through this. We're getting by. Monday morning was as scary as anything either of us has experienced, and our time with Will since then has been difficult because each fluctuation in his condition might indicate another episode like that. I woke up in a panic earlier this week because our furnace was making a noise that, in my subconscious, sounded like Will's ventilator and I was worried that it wasn't working right. Alarm clocks sound like phones and have us both sitting bolt upright in bed worried about what bad news might be coming. Those feelings, while always there, aren't always that close to the surface. This week, however, they have been. Today was tough, because nothing seemed to work. When he is doing well, we're doing well; when he hurts, we hurt, and the frustration is crippling at times because there is little we can do to help him. So, if we don't respond to e-mails or calls, just know that they really do help, but we can't always find the words to sum up how we're feeling or to even adequately respond.

Now, let's get 2004 -- and all of the hurdles and challenges that it brought -- behind us. It brought the most wonderful gift into our lives, but it's time to move on. 2005 is going to be Will's year.

Thursday, December 30, 2004

Another short report, which is good news. There was little drama in Will's day, and we hope the same can be said for the coming overnight period. He continues to breathe well, and is peeing again so the fluid retention is dwindling a bit. He actually lost weight (they weighed him early tonight) and might actually be able to open his eyes tomorrow... maybe. We'll see if they need to tap him overnight. Otherwise, he seems to be recovering well from his tough weekend.
Will seems primed to have a good day today. I know such sentiments have seemed to jinx him in the past, but it feels good to be optimistic just four days on from that 3 a.m. phone call. Though he crept up over 1500 grams today, his head seems less swollen, so maybe he is starting to get rid of some of the fluid he has taken on. They did need to tap him last night, but got about the same as they had the last time, which seems to indicate that it's at least not getting much worse. He leaked a lot more of the general fluid he's been holding after the tap (They basically stick a needle into the area around his lung and draw off the fluid there; the hole in his skin that this leaves allows a way out for the fluid elsewhere in his body to escape). Because his potassium level is better, they decided to start him a diuretic again that should help him to pee off even more of the fluid. Dr. Dagle today referred to the overall fluid retention, or edema, as "a cosmetic issue" today. The fluid around the lung is what is most troublesome. Still, it can't feel good to take on so much weight each day, so cosmetic or not, we're glad he's starting to get rid of it.

Otherwise, he seems to be doing well. His oxygen needs are low, his blood pressures are better and he just seems to be more comfortable. A couple of good days coupled with some good output will get Will ready to have a good start to the new year.

Wednesday, December 29, 2004

Not much to report tonight. Will had a pretty decent day; everything was pretty much in the middle as opposed to being very high or low. When we left tonight, he seemed to be sleeping and his oxygen needs were as low as they had been all day. If he had an entire night like that it would be fine with us. They're trying to get his potassium in line now -- it had been too high, then a bit too low -- and once they do, they'll restart his diuretic and he can pee off some of the fluid he's taken on. That ought to make him feel better. No word on the fluid around his lung, so we're hoping he can make it until morning or later without needing to be tapped. The longer he can go, the better.
Will is back up over 3 pounds again, but he continues to bulk up with retained fluid rather than brawn. They estimate his true weight as being closer to 2 1/2 pounds, so he has plenty of fluid to get rid of at this point. They did tap the area around his lung close to midnight, but they took out less than they had previously and that, coupled with the fact that they went about 36 hours before needing to do it again would seem to indicate that the medicine is having some effect. Otherwise, we're just hoping for a nice quiet day. He seems to be getting agitated every once in a while, and his stats drop off during these episodes. It's not unexpected -- if anything, I'd be more worried if all of the poking and prodding of the past couple of days didn't get him mad -- but it will be nice when he can get some of these things behind him, be a bit more comfortable and spend his time growing.

Tuesday, December 28, 2004

Will continued to have a pretty good day and evening, getting more incident-free time to recover from Monday morning. As of this writing, they have yet to tap the area around his lung again, which means he's up to 36 hours and counting. Again, it's a little early to declare the octreotide a success, but I must admit we'll be ecstatic if that proves to be the case. The more hurdles he can get out of the way, the better.

He did give me a scare this morning. I stopped in first thing before work to see him, and he was sleeping quietly. I went in to say good morning and stuck my finger in the palm of one hand to see if he'd grab on. He did, hard, which seemed to tell me he was hurting a bit. He went from being quiet and still to being fairly agitated, dropping his oxygen a bit. I took my hand away and tried to whisper a bit to comfort him. He calmed down, but in a few minutes he grew agitated again and started waving his arms around. His oxygen dropped off more quickly this time, and his nurse turning the flow up to 100 percent didn't bring him back up. She called for the doctors, who immediately filled the room, flipped the lights on high and grabbed the equipment to bag him. That brought him back up immediately. His heartrate never dropped off, and they said it seemed like was just mad and was clamped down and refusing to breathe just long enough to keep the ventilator from doing its job. If anything, they said, it was kind of a good sign, because kids who are really sick don't have the energy to do that. I was worried that I was going to get to witness a repeat of Monday, but it turned out to be something only slightly worse than what we've seen many times before. The reassuring thing was the quick response. It was a matter of seconds before he had the best the NICU has to offer hunched over his bed working on him. It's good to know they're that close.

So, as usual, we wait. Will the fluid around the lung dry up? Will he continue to recover from Monday morning? Will he lose that puffiness that keeps his eyes swollen shut? With time, all of those things will happen. We've learned to be more patient that we ever could have dreamed, and to do so with Will's health, the one thing that makes us more worried, frustrated and crazy than any other. As usual, he spends most of that time sleeping, resting up for the next challenge.

After spending 18 hours at the hospital yesterday, for the sake of sanity, energy and work I am limiting myself today. Will was doing OK this morning; not great, but better compared to low points over the past few days. He seemed agitated this morning. Whether it was the result of all that he's been through recently, a reaction to his lungs being compromised by fluid or pain resulting from some or all of this, we're not sure. They sedated him and he seemed to settle in pretty well. The plan today will be to leave him alone as much as possible and let him continue to recuperate. They'll keep an eye on the fluid around the lung, which, while seemingly slowing, continues to accumulate, and will just generally work to keep him happy and comfortable.

Monday, December 27, 2004

Forgive the indulgence: It's late.

It was about half a lifetime ago when I last looked to Bono from U2 to come anywhere near expressing in song what I was too emotionally stunted to say on my own, but he seems to have tapped directly into the vertiginous hole in my gut with the appropriately titled tune "Vertigo" that is heating up the airwaves right now. Not since "I Still Haven't Found What I'm Looking For" seemed to encapsulate what my high school self thought was an acute case of existential angst (but what turned out to be boring old adolescence) has the self-important Irish rocker so accurately summed up a feeling for me. This time, obviously, it has to do with what Will has meant to me these past two months. He has put up a hell of a fight against more obstacles than any person -- two-pounder or otherwise -- deserves to face in a lifetime. The experience, as I have shared here, has been described as being like riding a rollercoaster in the dark backwards, and that's as apt a description as any. The overwhelming joy at the tiniest thing -- Mary and I practically crying with excitement the first time he filled a diaper with pee after having had kidney troubles -- and the crushing sorrow that meets each successive challenge, have had the effect of ripping our nerves out from under the skin to sit raw on the surface for everyone to see. So, how did Bono, of all people, neatly sum up such a wild emotional swing?

Hello, hello,
I'm in a place called vertigo.
It's everything I wish I didn't know
except you give me something I can feel.

Pretty simple, eh? It's a love song with little import beyond the obvious, but for this listener, who heard it repeatedly on a particularly tough day for Will recently, it succinctly stated what Will has meant to me. I wouldn't wish the feeling of a 3 a.m. phone call from the hospital saying "we're having trouble with your son; you need to get down here" on anyone, but at the same time, strange though it may be to say, the entire experience of parenting Will for the past two months, that call included, has helped me to feel emotions I didn't know were possible. I know, I know, that's what being a parent is, and I'm sure every parent feels like this at one time or another. But it's new to me, and that's all that matters. Will has brought me the highest highs and the lowest lows, and all of it is part of being his Dad, part of opening myself up to joy like I've never known and heartbreak like I never knew I could stand.

This has been rattling around for the past couple of days, and maybe the fact that it came pouring out now can be chalked up to the fact that I've been up for the past 20 hours and 35 of the past 38. Thank God it was something as palatable as U2 that spoke to me (you wouldn't be reading this if Ashlee Simpson had tugged at my heartstrings), and that it happened on the first song in years where Bono actually seemed to care about what he was singing (has he delivered a word like "fee-eee-eel" so convincingly since "Pride"? Couldn't prove it by me.)

Now for what you really came to see: It's 11:30 p.m. on Monday, and Will is doing great. He's back down to needing 50 percent oxygen -- they've been slowly weaning him down from 100 percent since 4 p.m. -- his blood pressures are good, his ventilator settings are low and he is sleeping quietly. I know that anything can happen, and I'd be lying if I said I'm ready no matter what. But good or bad, it's all part of being with Will, and I wouldn't trade that for anything.
I'm in Will's room tonight, and he's doing better. His ventilator settings are back down where they were yesterday, and he is holding his oxygen really well considering where he has been in the past 18 hours. They continue to monitor him very closely to make sure he doesn't get another mucus plug that would block his airway, and he again has taken on a lot of fluid that has left his eyes swollen shut. But he has been able to sleep quietly most of the day and has had few issues to deal with related to his rough night or otherwise. They did drain more fluid from around his lung this afternoon, but it was less than they'd pulled off yesterday, and it took longer for that lesser volume to accumulate, so the medicine might be starting to work. We'll see. It would be nice to have that hurdle out of the way, because the way his lungs recover from all of these situations would seem to indicate that they are ready to start working a little better if given the chance.

We're hoping for a quiet night tonight, though I must admit I'm not eager to expect one. I'm real reluctant to go home and hit the sack for fear of getting another phone call. It's completely irrational, but I feel as if being here might keep something bad from happening. I have some work to do tonight, then we'll see. Extreme fatigue might force my hand, but I'll deal with that later.

We had another scary call from the NICU early this morning, but now several hours later, Will is doing pretty well and seems to be recovering. The phone rang at 3:07 a.m. with a call saying that Will was having trouble and we needed to come in. Every imaginable thought raced through our minds as we hurriedly got dressed and rushed to the hospital. By 3:25 we were standing outside Will’s room being told by his nurse that he was doing OK while a dozen doctors and nurses continued to work with him.

The entire episode started shortly before 3 a.m. His oxygen began falling off quickly and they couldn’t get him to respond when they tried to bag him to bring it back up. His heart rate started falling off quickly at the same time. His nurse hit the emergency call button, and soon his room was full of people ready to help. They took out his breathing tube and continued to bag him. The culprit was a mucus plug that was blocking his trachea and was big enough that it wouldn’t come up his tube. They got it out and got him breathing well again. He needed several medicines to get his heart back to normal, and had to do CPR on him for a while during the worst of it to keep things going. By the time we arrived 30 minutes after it started, the situation seemed to be in hand. They tried a couple of different ventilators to help him deal with the post-episode effects, but found that he likes the high frequency ventilator best and put him back on what he’s been on since the beginning. He had another episode around 8 with another mucus plug, but they caught it much more quickly this time and got him a bigger breathing tube so they should be able to get any other plugs out before they cause such problems.

The plugs are just a natural formation; mucus binds together and can form a little plug. They suction his breathing tube several times a day to get rid of such problems, but sometimes the plugs can hide out in the lungs and cause problems because they grow too large to get out through the tube. It could happen again at some point or never again. It’s up to Will’s respiratory system at this point.

He’ll rest quietly today so he can recover. He’s on morphine and a muscle relaxant that will keep him from fighting against the ventilator. Much as they did during his PDA surgery, they’re letting the ventilator do most if not all of the work of breathing for him.

If there is good news to take away from this morning, it is that the fluid around his lung doesn’t seem to be reaccumulating as quickly as it had been. The last time they tapped him was more than 24 hours ago, and while there is now some reaccumulation, it hasn’t been enough to compromise his breathing yet. It’s tough to know what to make of that, though. The doctors say that under ideal conditions it’s difficult to know if the octreotide really helps to close a lymphatic duct leak or if it would have just closed on its own. This morning was far from ideal, so they certainly aren’t ready to say the octreotide is working already. Will doesn’t need any more hurdles, however, so if the fluid leak is slowing, that is fantastic news.

So, here we are 8 hours later, sitting with our son almost as if nothing had happened. His stats are pretty much where they were last night when we left him, save for the fact that his ventilator is set much higher than it had been. He gave us a real scare to be sure, but as with all other challenges he has faced, he just took it on and seemed to recover. We’re not sure where he finds the reserves to deal with all of this, but we’re glad he is able to tap into whatever it is. There are times when it feels like we are helping him to pull through, a light touch of a hand to his head seeming to calm him. This morning, it was Will pulling us through. While we sat and worried, cried and wondered at what was to come, he faced it down and just kept chugging along. It’s absolutely unbelievable how strong this kid is. He is a tough little fighter, our Will.

Sunday, December 26, 2004

Will's chylothrorax continues without slowing; if anything, the flow of lymphatic fluid actually is increasing. So, they've decided to start him on a new treatment. It seems they expected it to slow down by now -- usually keeping a kid from eating does the trick -- and because it hasn't they want to try other avenues rather than wait the days or weeks it might take to stop on its own.

The medicine they plan to use is octreotide. (Note: the page this takes you to is Google's cache of the article in question. The page requires registration to view it, but I found this back door to save everyone the trouble of signing up). It's a fairly experimental treatment because its use in an instance such as Will's is still relatively new. As those who read the entire linked article can see, however, the response to those treated with this medicine has been almost overwhelmingly positive.

Octreotide does have side effects. For Will, the effect they'll watch most closely is a lessening of blood flow to the digestive system. They'll keep an eye on things to make sure they keep on top of any problems. He isn't eating, so there isn't the worry that he won't be able to digest food, but it can cause more long-term problems if left untreated.

The good news, however, is that the medicine has typically kicked in quickly and dried out the lymphatic leak. If that is the case with Will, he would be able to eat sooner and get on the mend. In some cases it takes considerable time to heal, however, so we'll just need to wait it out. We've found that Will operates on his own schedule. At times, it has seemed like he likes the challenges presented when the doctors talk about odds. The odds were against his PDA reopening after indomethacin, the odds were against a lymphatic duct tear after the PDA ligation, and the odds were against the leak lasting as long as it has. So, when they say the odds also are against the octreotide needing very long to work, we wonder if that isn't just another way of saying, "it will take quite a while to work on Will."

So, they'll start that this afternoon and see what happens. Meanwhile, his oxygen needs remain low, they're on top of his fluid loss and replenishment much better now, and his heart rate and blood pressure have both been much more stable. All good signs, and all indicate that if he can get this leak closed, he'll be back to what he's here to do: grow and get better.

Saturday, December 25, 2004

Will got this hat as a hand-me-down from his cousin Maggie, who was 7 weeks old last Christmas. It's a bit big for him, so we improvised. He seemed to like it. He had a pretty good Christmas overall. He spent much of it with my folks after spending Christmas Eve with Mary's parents. He continues to deal with fluid issues, but the doctors and nurses have been better at keeping up with him over the past 24 hours, giving him fluid to replace what he loses when they tap the area around his lungs. Tomorrow is his two-month birthday, and they have been two of the most challenging months we have ever faced. But being able to see this little guy on Christmas morning peeking out at us just made all of those rough times fade away. Merry Christmas to everyone.

Friday, December 24, 2004

It's a quiet Christmas Eve here in the NICU, and Will is making the most of it by sleeping most of the day. He's doing pretty well despite the fact that they drained another 25cc of fluid from around his lung today. The good spin to put on things is that each time they do drain that off, his stats jump back up and he seems very comfortable. That would seem to indicate that he's in a pretty good place with his lungs, and, if not for the fluid around them, he would probably be back to where he was a couple of weeks ago during what we've taken to calling "the great week." The fluid seems to be more an inconvenience than a significant hurdle, though it obviously is something they'd rather not have him confront for too long. Because they've been taking so much fluid out of him, they now are giving him more in the form of saline and albumin. His blood pressure has been low, and this will help to stabilize that, as well as to keep fluid from leaking into his tissues. So, while it seems odd to give a kid with too much fluid in his tissues still more fluid in the hope of correcting that, it will help because it is the right kind of fluid. They've said several times that it's possible for him to be considerably bloated and still be dehydrated because the fluid isn't in the right place. Yet another reminder of how complex a system the body is, and how self-correcting it can be if you're not 32 weeks old gestationally.

Thursday, December 23, 2004

Once again I'm in Will's room, enjoying a day off from work -- or rather, a day off from the office; I'm still doing some work to get ready for next week -- and the chance to get online and write about Will while actually watching Will. Right now he is doing really well. His oxygen needs, while a bit higher now than they were overnight, are consistent, and he is resting quietly for the most part. He has fits, I assume related to the bronchopulmonary dysplasia that doctors talked with us about a few weeks ago (but I don't recall if I dealt with here). Essentially, being on a high frequency ventilator for so long does damage to a baby's lungs, and that damage can be an irritant that causes the baby to become uncomfortable and at times inconsolable, even if nothing appears to be wrong. I would imagine that being puffy with fluid and having your breathing compromised by still more fluid around your lung would make anyone uncomfortable anyway. So, at times he seems to hold his breath, start wiggling and gets red. His stats drop accordingly, then come back up once he settles down and starts breathing again. If he does this too many times in a row or starts before his stats go back up, he can set off the alarms that sound when his oxygen gets low. Though he has had several such fits today, he has only alarmed low a couple of times.

That said, the fluid is reaccumulating around his lung, and they expect to need to tap it later this afternoon. They may reassess if Will continues doing well as he is now, however. The longer he can go between taps, the better. At the same time, they want to do it before he gets too compromised so that he can maintain a more even keel rather than face constant ups and downs. All in all, it's just another part of the waiting game to see what he will do next.

Wednesday, December 22, 2004

Will continues to deal with the lymphatic fluid around his lung. He needed to be tapped again this afternoon because it was compromising his breathing. For now, they've decided that it is better to continue tapping him when needed rather than insert a chest tube. We're certainly OK with that; the idea of him dealing with a tube for a couple of weeks or more -- and the requisite discomfort and threat of infection it brings -- isn't pleasant.

Whether it's because I'm noticing it more now or because there simply are more things going on these days, premature babies seem to be in the news a lot lately. Local media around here have carried several stories about small babies recently, including a few about the UI NICU, and now the smallest baby ever is making headlines in Chicago and around the world. Rumaisa Rahman was just 8.6 oz. when born Sept. 19, and is now more than 2 lbs. and doing well. She was 26 weeks gestationally, which means that despite her low weight, she had two more weeks to develop in utero than Will (26 weeks and 5 days vs. 24 weeks and 3 days officially). Even more in her favor is her gender. "Boys are wimps," the Chicago Tribune quotes Rumaisa's doctor about the better luck of premature girls. While I'm sure Will would beg to differ given what he's been through, we've been told from day one that it's tougher for premature boys, particularly when it comes to lung development. Wouldn't you know that adhering to this truism is the one time Will decides to be predictable.

The stories about Rumaisa allude to difficulties she and her 1 lb. 4 oz. twin sister have faced, but I'm amazed at how few hurdles were described. Then again, a news story about Will would likely mention the PDA ligation, some fluid retention issues and now the chylothorax, I suppose, leaving out those
undocumented daily struggles that few beyond parents and caregivers can truly comprehend. The good news is that these twins are doing really well and will go home soon. Like the many other stories we have heard over the past two months about tiny babies spending months in a NICU, it has a happy ending. It will be tough to wait, but soon it will be Will's turn.

Tuesday, December 21, 2004

The good news is that I now understand how the fat, pleural area and lymph systems and everything else are connected in what is ailing Will. The bad news is that I was able to reach this understanding after having a long discussion about the issue with Will's doctor after they tapped him again tonight.

Once again, Will was doing great early in the day and then took a downturn that left him needing about 80 percent oxygen or more by the time we came in for our evening visit. A chest x-ray showed that Will's lungs were not working so well again and that the fluid build-up was back. The attending physician, Dr. Dagle, came to take a look at him and they decided they should tap it again. They did, and now he's breathing much better and his most recent x-ray was much better.

We had the chance to talk with Dr. Dagle extensively about what is happening with Will. We've been able to do this before, obviously, but in the meantime I'd spent some time reading up on things on the Internet by punching the few key words that stuck in my head from previous discussions into Google. I figured out what was going on, and Dr. Dagle filled in the holes and I now understand it much better.

Will has what is known as chylothorax. The link offers the best explanation of this I've found thus far, though it deals with a small child rather than a premature baby. You'll need Adobe Acrobat to view the page, but it's worth it. In a nutshell, the doctors are convinced that Will's PDA ligation of two weeks ago caused some irritation or trauma to his lymphatic system, either the lymphatic duct or any of the series of vessels in the system that carry cells and fat and other things throughout the body. This trauma caused the leakage of fluid, which, over the past couple of weeks, built up to fill the pleural area around the left lung. There are different types of such pleural effusion (again, these links deal with big people, and often with illnesses that Will isn't dealing with, so only take nuts and bolts from these sites and don't focus on the bad stuff, OK?), and the one they're certain Will has is chylothorax. This chyle is created by the digestive system when it digests fatty foods. Will hasn't had many fatty foods (or any foods) lately, so the fluid is really more lymphatic fluid than chylous fluid. The reason he is not getting food is because the fat in that would basically travel right up the lymphatic duct and into the pleural area, causing even more problems. So, they continue to just give him his nutrition through his IV line.

I had written earlier about the possibility of a chest tube, and that possibility is still there. But Dr. Dagle was encouraged by the fact that it took 36 hours for that space to fill this time, where before it was 24 hours. If Will continues on that trend line, it would seem to indicate that the leak is closing on its own. If not, they'll probably insert the tube and then we'll be dealing with a more long-term thing. Otherwise, they'll tap him as needed. It will still be a couple of weeks before he can eat, because they don't want to give him fat and have that somehow restart the leak. We've been here before with his PDA and know it's better to just get a problem behind him.

As with everything, there are other possible explanations for this. Babies can have congenital problems that lead to this as well, but Dr. Dagle said Will's age and the fact that this happened when it did and where it did make him fairly confident that it is related to the PDA ligation.

There are signs of progress. His first chest x-rays showed his lungs to be whited-out, which mean they weren't inflating. During his good stretch a couple of weeks ago, they were darker, showing that they were slowly getting better. Tonight, before they tapped the fluid, his x-ray again looked more whited-out. The x-ray taken immediately after they tapped him showed the lungs to be darker; when given the chance, they work pretty well considering he still is dealing with significant lung disease.

So, we wait, and hope that this resolves itself soon so he can get back to growing and getting better. I've run out of rollercoaster metaphors for the time being, but suffice to say that you never get used to the feeling you get when the door slams shut on that small sliver of optimism you'd let creep in. This morning I let myself think he'd turned the corner, but tonight I accept it for what it was -- a short good period where Will wasn't struggling. He's in another of those right now, breathing well again and resting quietly. Tomorrow might bring another hurdle; knowing Will, tonight may bring one. But these quiet moments allow him to recharge and gain the strength to push through. The best that we can do is follow suit.
Winston Churchill once said that "Russia is a riddle wrapped in a mystery inside an enigma." With all due respect to the late prime minister, Russia is a piece of cake compared to Will. He did great last evening; his nurse was about to turn his oxygen down to 35 percent as we were leaving. Mary called at 6:30 this morning to see how he was doing and found that he had another rough night, needing increasing amounts of oxygen and just generally being restless. We fully expected to come in and find him with a chest tube. So what does Will do? He somehow recovers, and was again sitting at 35 percent oxygen when we came in later in the morning to see him. They took a chest x-ray and found that his lungs look much better than yesterday. Yes, he still has a little fluid build-up around the left lung, but it is a small amount. His x-ray was so good that his doctor, when seeing it for the first time, said (somewhat for our benefit, I'll admit), "Is that really William? That looks great!"

We'll take this for what it is: momentary good news. Even if it means that the fluid problem is resolving itself, they'll still keep watching it for the next week or two, and while they do so they won't feed him breastmilk. I'm not entirely clear on the concept - health professionals should feel free to weigh in with clarification in the comments section below - but the fluid has something to do with his lymph nodes, and the fat in breastmilk can somehow exacerbate the process that leads to the extra fluid. So, as long as that is a concern, he's on a low-fat (read: no breastmilk) diet.

And if this is just a short pause that will be followed by more fluid build-up? Well, then the possibility of a chest tube is still out there, and he would be without food for even longer. Some kids with this condition can go weeks without resolution. So, Will might not be happy with what his soon-to-be-favorite cartoon bear, Winnie the Pooh, would call a "rumbly in the tumbly," but he'll need to deal with it. Yet again, the best advice for the little guy is to tough it out.

Monday, December 20, 2004

I'm trying something new tonight, posting from my laptop computer in Will's room. This place is really great for people like us who spend an awful lot of time here -- because babies here come from all over the state, parents must often travel great distances to come see their children, while we live just a few minutes away. There are chairs in the room where we can sit, a closet for us to store things and, as I learned tonight, an Internet hookup. That means I can work from here sometimes and not feel the need to rush home and stay up until all hours just to get ready for the next day, and tonight, it means I can actually look right at Will as I write about him. That avoids those inevitable times when his condition has likely changed by the time I get home and find a moment to post.

So, tonight, right now, he is doing pretty well. He's pretty calm, not needing a lot of oxygen, and seems content. He continues to get rid of fluid and is slimming down. Of course, much of that was true the past two nights, so we'll need to wait and see what the early morning hours will bring. His most recent x-ray showed that while some fluid has crept back into the area around his lung (pleural effusion), it's nowhere near what it had been. That was probably true of Saturday and Sunday nights, too, so we won't pull out the party hats just yet. So far, they have seen no signs of infection in what they pulled out Sunday morning , however, which is good.
It seems the fluid build up around Will's left lung was not a one-time thing. Much as he did Sunday, he had a great evening with low oxygen needs, and then needed increasing amounts through the night until he was on 100 percent by morning. Seeing that he had more fluid around the lung, they tapped it again and found almost the exact same amount there as on Sunday. The fact that it built up again so quickly seemed puzzling to the doctors. They decided to keep a close eye on him today to see if it builds up again. If so, they'll insert a chest tube to drain it. If that does the trick and it dries up in the next week or so, they'll chalk it up to continued irritation caused by his PDA surgery. If not, or if analysis of the fluid shows it to be something else, there are different treatments they can try depending on what it is. They still seem to be leaning toward thinking it is related to his surgery because it is only on that side.

He continues to lose the other fluid weight, and is down to 1140 today, which is still 200 grams heavier than he was before he started taking it on last week, but more than 200 less than what he weighed at his heaviest. His boyish good looks are returning (not that they really ever left, of course) and he seems more comfortable.

One thing did go well today -- he got a new percutaneous line in his leg. This line is like an IV, but rather than going only as deep as a needle would, it has a catheter on it that travels up the leg and into his torso to better deliver medicine and food. He has one in his right hand now, but the line moved too much when he was bulked up and wasn't in a good spot. This one in his leg should be more stable. We hope they'll take out the one in his hand soon. Will really seems to be able to comfort himself when he can keep his hands close to his face, and having an IV and a bandage on that hand makes it difficult for him to do that. When you're restricted to a bed and pretty well pinned down with breathing and feeding tubes that keep you from being able to squirm too much, you find your comfort where you can.

Sunday, December 19, 2004

Will is doing well tonight, but he had a long journey over the past 24 hours to get to this place. As everyone reading this is aware, he has a lot of fluid built up in his body from being sick this past week. In the past couple of days, they found that he also has fluid around his left lung. This is different from the other fluid, which is closer to the surface and is pretty standard for a sick infant. This fluid around the lung is more concentrated in the area directly around the lung. This could be caused by any number of things, including the fact that they had to move that lung around when they did his PDA surgery two weeks ago. When we last talked with the doctors about this yesterday, they were content to wait to see if it would resolve itself, saying they would do something only if it was compromising Will.

Last night, he was having real trouble breathing, needing higher oxygen levels than usual. An x-ray showed that the fluid around that lung was moving it off to the side, pushing the other lung and his heart with it. Because this was compromising his breathing, they decided to tap the area, sticking a needle into his side to pull the fluid out. They took out about 14cc, which doesn't sound like much, but one of the doctors said that would be the equivalent of a liter in a full-size person. By this afternoon, the difference was easy to see. He was back down to needing about 40 percent oxygen (as opposed to 80-100 percent last night) and just seemed more comfortable. He also is peeing out some of the other fluid he has been retaining -- he lost nearly 200 grams between Saturday and today -- and is on the mend in that regard as well.

Long-term, there still are new issues brought about by the fluid around the lung. It could be related to the PDA surgery, or a sign of something else to watch. They sent what they drew out of him to the lab for testing to see what it is and what it might mean. As with all of the hurdles Will has faced, the doctors are quick to see things and even quicker to take action if need be. And through it all, Will just keeps going, oblivious to the mad scramble of doctors and worried, sleepless nights of his parents that each new hurdle elicits.

So, once again Will has faced down another tough 24-hour period and emerged with little more than the need for a good night's sleep to show for it. We're hoping he continues to recover from all of this over the next couple of days, getting back down to his real weight and having the chance to eat again. Neither of us would argue if that meant we could hold him again, either.

Saturday, December 18, 2004

Mary and I know when we've been trumped in the parenting department. We were there this morning preparing for a visit from my parents and grandparents, and Will was being fussy. We were worried that his great-grandparents' first experience with him would be of seeing his oxygen going up and down and the nurses needing to work with him to keep him stable. So, we left him to settle down a bit and had lunch all together, then came back in. He was rock solid the entire time, acting as if it was no big thing to spend a day with four generations of family all in the same room. Will just seemed to know that he should be on his best behavior for such special visitors. We've found that Will likes to have the top of his head cupped by a hand, and I asked my grandpa if he'd like to try. He said he was worried about them being too cold, but we assured him Will could handle it. After a bit, my grandma was going to give it a try, and she, too, worried about her cold hands. My grandpa felt her hands to see if they were cold, and my grandma said, "Well, your hands are warm now, you warmed them up on Will!" Just goes to show our tough little guy isn't fazed by much of anything.

He still is retaining a lot of fluid -- he gained weight yet again today; that's nearly another pound of fluid added to his two-pound frame since earlier this week -- but they've started him on two new medicines that are supposed to help him work it through and to keep it from building up so much in the future. Until they have a chance to work, he'll continue to go without breastmilk. He's on the right track, as he has been filling up his diapers pretty regularly today.

After the excitement of the early afternoon visit, he seemed to settle in for a well-deserved nap. At this point, breathing, peeing and sleeping make up the bulk of his agenda. Today, he was primed to handle all three of those tasks.

Friday, December 17, 2004

Will is much the same today as he was last night... slightly bigger, actually. But he put on only a few grams overnight, and has been getting rid of the fluid a bit more today, so we're hoping he'll slim down a bit now. They had discussed feeding him today, but he didn't seem ready, so they'll try again tomorrow. Otherwise, not much new to report.

Thursday, December 16, 2004

Perhaps the increased dose of dexamethasone is going to do the trick. Will was pretty stable for the entirety of our visit tonight, keeping his oxygen needs low and resting as comfortably as one can after putting on about a quarter of his body weight over the past 72 hours. He's peeing a little bit again, and will need to continue that for quite a while before it starts to work through all of that excess fluid. He seemed like he was ready for a good night's sleep, and I think it's safe to say we're in complete agreement on that one.
Well, I can't honestly say Will is doing much better today, but there is good news to report. In an attempt to rule out some reasons for his recent downturn, the doctors decided to have another echocardiogram taken of his heart. No, the PDA isn't open again. This time it is his ventricular septal defect, or VSD. That is a hole between the lower two chambers of his heart. He's had it since the beginning, but the PDA was of greater concern early on. The good news is that the echo and subsequent exam by the cardiologists found that the VSD was either so small that it wasn't causing much problem or had maybe closed up completely. That's good, because an open VSD can have a similar effect as the PDA, with blood flowing where it shouldn't and causing efficiency problems. And, unlike the PDA, fixing it isn't as simple as going in and stitching it off. This one would require open heart surgery that isn't done until the child is older. So, it's a good one to have off the table.

That tells the doctors that the problems are with Will's lungs. That's still no picnic, but at least they can focus on this one thing, and it does have an impact on his treatment. For example, they had weaned him off of the nitric oxide last week because it not only helps the lungs but can actually exacerbate the shunting of blood from one chamber to the other through a VSD. With that no longer a concern, they will reintroduce that to help Will's lungs again.

His head still looks huge and he has a lot of excess fluid, but they assure us that it is more uncomfortable than dangerous. He is getting a diuretic now that has begun to help him get rid of it, but he has a long way to go. Also, they have increased the dosage of dexamethasone he will receive, and plan to give a fourth course of it tomorrow, because the initial doses have been small and aren't having the desired effect. We asked about the safety of doing so, since they told us at the outset that they give it in small doses for shorter periods because of possible side effects. Without going into the math involved, they said that they changed the way they give that in the past year so they start out giving less now and increase it if needed. So, the amount he'll get now over four days is equal to what they used to give as a standard three-day course. So, we'd hoped that he'd be further along the road to recovery by now, but are hopeful that all of this will kick in soon.

Wednesday, December 15, 2004

The report on Will tonight is a mix of the good and the bad, which means it's pretty much status quo. He seems to be breathing a bit better thanks to the steroids, but he still is holding an amazing amount of fluid that has left him incredibly puffy and, if I had to guess, extremely uncomfortable. The doctor said he doesn't want to give him a diuretic just yet because it has a similar effect on the lungs as the steroid, and there is a risk of actually doing too much to reduce inflammation. So, Will gets to tough it out for another night. He was getting rid of the fluid a bit earlier today, but by tonight the flow had slowed to a trickle. Hopefully he'll start peeing again and can get some of that fluid off over the next day or two. It's very frustrating to sit there and see him look so bloated and miserable and not be able to do anything about it. If he can get rid of all that fluid, his lungs might actually be able to benefit from what the steroids are doing for him. Until then, it seems to be keeping him at even at best. We've had no quarrel with anything they've done for Will up to this point, but they'd better know what they're doing this time. I'm not going to sit by and see him this uncomfortable for much longer without raising a stink. I can't believe with all the whiz-bang stuff they have over there that they can't find a way to make a kid pee without it causing undue harm.
Another day, another nickname. Today, Will really looks like Charlie Brown. He continued to take on fluid overnight, and much of it seemed to settle in his head, which is truly round. He's over 1100 grams this morning, which is an increase of about 100 grams since yesterday. The good news is that the dexamethasone continues to help him, and he is starting to get rid of the fluid. His oxygen needs are lower, and he just seems to be more comfortable.

Tuesday, December 14, 2004

The doctors have told us so many times that Will obviously doesn't read the same textbooks that they do that we're pretty sure everyone involved in his care will one day write a textbook dealing exclusively with what it takes to treat him. See, every time they expect one thing, he does another. In the very least, they'll need an appendix to each chapter in the neonatology textbooks: "The baby will react like this (note: if you are treating Will Kenyon, see page 238)."

It happened again tonight. He was having real trouble with his oxygen and his heartbeat was racing. They did a few different things, tweaking this and altering that. At one point they took an X-ray and Dr. Dagle came to tell us that Will's lungs looked much better than they'd expected. "He responded really well to the dexamethasone," he said, "which is not what we expected at all."

They expect a good response to that steroid, of course, just not as quickly as Will showed it. The result was that his oxygen needs decreased right before our eyes, and his heartrate began to settle down. So, we left hoping that trend would continue and that he'd have a good, quiet night. They anticipate that by later Wednesday he'll be feeling better, peeing more to get rid of that excess fluid, and breathing more easily again. We'll see. As we've learned by now, Will is going to do what Will wants to do; everyone else is left to play catch up.

On a lighter note, Will's bulkier physique has left his fatigued father coining any number of names for him, mostly stolen from the world of hip hop. Many different names apply, including Puff Daddy, Notorious B.I.G. and Biggie Smalls. These are added to the descriptive terms brought about by his constantly changing appearance. His ruddy complexion after a recent blood transfusion, coupled with his penchant to raise his rear end and move it around as he tries to settle himself while sleeping on his tummy led to my favorite so far: Pinky McWigglebutt. Poor kid. As if he doesn't have enough to worry about. Yes, I need sleep.
I certainly expected to be more excited when Will topped 1,000 grams, but it wasn't much of a milestone for him to pass today. Yes, he's a whole kilogram now, but little if any of the weight he has put on the past few days is actually him. Sick babies retain fluid, as we've been told, and he's retaining a considerable amount right now. Few could imagine how a two-pound baby could be chubby, but Will is right now, and it seems to be making him fairly miserable. The attending physician, Dr. Dagle, said Will needs to "tough it out" right now, because while he's uncomfortable for him to be so bloated, it would be unwise to make him get rid of the fluid before his body does so naturally. Well, Will has been toughing it out for the past seven weeks, so I'm sure he'll be able to do so for a couple more days to get through this. Relief is in sight -- he started another course of dexamethasone today that should get him back on track.

Monday, December 13, 2004

Will seems to have stabilized a bit tonight. During our visit this evening he was rock solid, needing no changes to his oxygen levels. That need still is higher than it was over the weekend, but better than it had been last night or even earlier today. I'd credit the antibiotics, but now they say they aren't sure he has an infection after all. It might be inflammation in the lungs, which means another course of steroids is likely in the offing. That has been good news for him in terms of the way he has reacted to it in the past, but we'd like to see him move past needing it at all. All in good time, I suppose, as all things are with our little guy. He's definitely bigger and stronger than he was the last time we were at this point, which is a good thing.

He's acquiring quite a little library in his room thanks to the kindness of friends and family (and his Mom's love of children's books), and seemed to enjoy the stories Mary read to him tonight. His nurse suggested that Mary should stay all night to read if it meant having him this stable, and she seemed to only be half joking (and Mary wasn't joking at all when she said she'd love to). In the end, we decided it would be better for all involved (except the nurse, of course) to get a good night's sleep to rest up for whatever tomorrow brings.
I cut back to one posting a day for the weekend because Will is doing so well and what does he do in response? Gets an infection. After a great Friday and Saturday that capped a pretty great week overall, Will's oxygen needs were up Sunday and he was having more problems digesting his breastmilk. Nothing too alarming it seemed; even the doctors were taking a wait-and-see stance because all of his other stats were normal.

Overnight, however, his oxygen needs increased dramatically, and that coupled with the digestion problems and his irritability led them to believe that he has another infection. We found out thanks to a 4:30 a.m. phone call from the NICU so they could let us know they had put him back on antibiotics and had increased his ventilator pressures significantly. They told us not to come in, as he was doing better by the time they called, and there wasn't anything we could do for him. It's hard to get a call like that, but we're glad they do so to keep us updated on his condition.

I had to be up early to go talk on the radio about a big feature our paper put out this week, so there wasn't much sleep to be had between 4:30 and 6 when I got up. I showered quick, got dressed and headed over to see him before going to the station, and he seemed better. His oxygen needs were back to what they had been when we'd left just hours before last night, and the pressures on the ventilator, while up from where they'd been when we left, were down considerably from where they had been in the early morning hours. He was puffier again -- his new record weight of 944 grams won't last -- and was getting a blood transfusion to go with everything else. The middle-of-the-night phone call from the NICU had us fearing the worst, but he seemed to be doing OK by the time I left.

The other two times they have feared an infection, he has responded really well to the antibiotics (vancomycin, gentamicin and pipericallin-tazobact for those keeping track at home) and recovered quickly, and we hope for a similar result this time. He has made so much progress just since his surgery 11 days ago, and we don't want to see that derailed for too long. Still, after a week in which there has been much talk about the next stage of treatment for Will and a slight slackening in the anxiety over his condition, it was a good reminder that he's the boss, and he's doing this according to his own schedule.

Sunday, December 12, 2004

OK, I've finally figured out this weight thing. Will weighed 937 on Friday, 911 on Saturday, and 931 today. My bad memory and a nurse transposing two days' worth of measurements are to blame for the mix-up. So, he was two pounds on Friday and today, but not yesterday. He probably won't be two pounds tomorrow either, because they're holding off on his feedings today while he, um, works some things out. He's been a bit more fidgety today and needing more oxygen than in the past couple of days, but he's still doing well overall. Any number of things could explain the fidgeting, including the bronchiopulmonary displaysia mentioned a couple of days ago, or the aforementioned need to "work some things out."

Yesterday was a milestone for Mary and me. She headed to Hancher Auditorium to see the Joffrey Ballet's "Nutcracker" with tickets she's had for months, while I went to the Corridor Business Journal holiday party. These were our first evening social outings since before Will was born. While I spent most of my time talking about Will, and Mary no doubt spent a good portion of her evening thinking about him, we were able to get away for a bit without having him show any signs of distress. We each went straight to visit him after our respective outings (what are the odds they'd both be on the same night?) and found him quietly sleeping. As many have reminded us, we need to do things like this, because he'll need even more of our attention when he comes home. We know that, but it's hard to convince ourselves that we should spend our free time doing anything other than being with him.

Saturday, December 11, 2004

Will had a great day today. I know I have been remiss in posting word of his condition, but that's mostly because he has been doing so well that there isn't much to report. I can offer a mea culpa, however -- he didn't officially break the two-pound barrier until today. Whether it was wishful thinking or just a premonition, I was a day early on my weight report. Contrary to yesterday's post, he weighted 911 grams on Friday, and 937 today. So, he did get there, just later than originally reported. Otherwise, he has been doing really well with breathing, eating and resting. We'll always take days like this.

Friday, December 10, 2004

Big news in Will's world today, and I mean big - relatively speaking, of course. He weighed in at 936 grams today, which, for those of you who don't have conversion charts memorized, is about 2 lbs, 1 oz. It took him 45 days, but Will finally cracked the 2-pound mark. To celebrate, the nurses took away the layer of plastic wrap that had been over him in his warmer bed to hold the heat in, which meant much better access for parental hands looking for a part of this growing boy to hold. He continues to eat well and breathe well, which means he should keep growing at a steady pace. He does have his cranky moments now and again that force the nurses to turn up his oxygen or give him the occasional dose of a sedative, but for the most part he's just chugging right along.

Thursday, December 09, 2004

Will had his surgery a week ago today, and his condition since then has made us believers in the need to close his PDA. He was doing well even before his surgery, and since he has been even better. He still has fits where he gets irritated and needs some sedation, but overall he is finally doing what they want and expect. They've increased his feedings to 6cc ever four hours, the most yet, and will likely turn off his nitric oxide for good tomorrow. That had been to help keep the blood vessels in his lungs open to help him breathe better, but he is doing well enough now that they don't think he needs it. All of this means that our little guy can really start to grow and get stronger. We're definitely ready for that.
Mary reports from the hospital that today seems to be a "make Will happy" day. He's coasting right along, so they really are just trying to making him comfortable and let him rest and grow. They've increased the amount of food he gets yet again, and seem to be happy with his progress. He did so well with being held last night that it seems we'll likely be able to keep up an every-other-day schedule with that, so I'm very much looking forward to Friday and beyond. He'll continue to have struggles, of course, but it's great to see him string so many good days together.

Wednesday, December 08, 2004

That was an overjoyed Mary below talking about holding Will for the first time. I was just as happy tonight as I was getting to hold him on Monday. Having the three of us together felt right, even if there were tubes and sensors and machines beeping all around us. Maybe Will knew he was going to get some more snuggle time, because he was well behaved much of the day. They have responded by continuing to wean him bit by bit from his ventilator and the nitric oxide he had been getting. All in all, it was a good day for Will, and a great day for his parents. Here he is content in his Mom's arms, looking warm in his stylish new sleeping cap.

Nothing about parenting has been as I expected, except for this--the utter joy of holding our son for the first time. The rest of the world melted away in that moment as they placed him in my arms and despite the activity of a NICU evening, there was only Will and John and me. The moment turned into an hour and a half. He was so content the nurse asked if I wanted to hold him for her all night. I gladly would have, but I gave him back when it was time for his meds.
Not much to report today. Will is having a good day so far, not fussing quite so much and really holding his oxygen pretty well. They increased his feeding schedule a bit, and will keep it up as long as he digests what he's given. They continue to wean him a bit on the ventilator, lowering the settings each time he seems to tolerate what he's been on before. He still needs considerable support from it, but less that he did before his surgery last week. As always, these are small steps, but they're in the right direction.

Tuesday, December 07, 2004

What a turnaround from last week. Just five days ago we were white-knuckling it through Will's surgery. Today, they were giving us a tour of the intermediate bay of the NICU to which Will will graduate when he's ready to move on. That is still several weeks down the road I would guess, but it's just such a weight lifted to hear them talk so confidently about the future after so much time spent watching his minute-by-minute fluctuations. We were met by Will's doctor tonight as we walked down the hall, and he stopped us to say what a good boy Will had been all day. We both were beaming at the news.

He is a bit fussy these days, something they attribute to his bronchopulmonary dysplasia, which is a common side effect of being on a ventilator for so long. He would be doing great for a while, then start fidgeting and look really uncomfortable before calming himself down (often with the help of a soothing hand on the head or his back) and getting his stats back to normal. Compared to the problems he was having before his surgery, this is very manageable. The nurses tonight said they work hard to find the things that make each baby feel more calm and happy in an attempt to minimize these moments. By the time he moves from the high frequency ventilator to a cannula that provides oxygen through his nose, the fussiness should drop off (at least to that shown by term babies).

As I type this, Will is about 15 minutes past his six-week birthday. In some ways, it's hard to believe it has been that long, in other ways it has seemed like months. Another milestone came today when he received his last head ultrasound (which is done at 1, 7 and 42 days of life). It was clear, as were the other ones. Another good sign.

So, Will just continues to amaze us. He has a long road ahead, and the hurdles still are many. But today was a good day that helped us to look toward the not-so-distant future when we'll get to bring him home.
Now that he's had the excitement of being held in his father's arms, Will can move on to the next exciting thing: eating. His feeding schedule is getting back on track, close to where he was at his best just before his surgery last week. That way he can bulk up and get ready for another session of cuddling, this time with his Mom. If he continues to do well today and tonight, that should be on the schedule for tomorrow. There will be pictures a-plenty of that event, so stay tuned and stock up on tissues.

Overall, he is doing pretty well. He still gets a bit agitated at times, but it seems that might still be some lingering pain and/or discomfort from his surgery. Otherwise, he has been wide-eyed and alert for the most part. They are trying to get his schedule a bit more in synch with the whole daytime-nighttime thing because he went into and came out of the sedation for his surgery at times that seemed to throw that off. It's hard enough when you're in a room with no windows, so anything he does to approximate day and night is a step in the right direction.

And to show that all problems related to Will aren't Will's fault, he had further trouble with his CO2 overnight. They tried everything to solve it, but couldn't find a solution. Finally, after a call to the doctor at home, they decided to switch his ventilator (the same one I had been complaining about for two days because it sounded like there were loose parts banging around inside of it). Lo and behold, the switch did the trick. Not only was his CO2 back on track after that, but it was at a level good enough to allow for the shaking aspect to be turned down a bit more again. As usual, we parent where we can, no matter how strange the method.

Monday, December 06, 2004

We probably won't have time for Christmas cards this year, but if we did, this photo would probably adorn the front. Here I'm cradling Will against my chest while Mary lends a hand. When the day started, we had no idea that Will would be stable enough to try this, let alone to do it for an hour with no troubles at all. The nurses said they only like to do this every other day for a while, so Mary must wait patiently until Wednesday for her turn. I was told in no uncertain terms that, recent birthday or not, there would be no cutting in line.

Well, my birthday passed uneventfully Sunday -- as was my wish -- but the day after my birthday was something special. I was able to hold Will for the first time. They needed to change his bed -- to literally switch the one he'd been using for another one -- and needed to do something with him while they did so. They decided he was stable enough for some "kangaroo care," which involves a parent holding the baby to his or her bare chest for some good skin-to-skin contact. Because it was a bit easier for me to unbutton my shirt, I got the first turn. By the time they had tried two beds to finally find one where the warmer worked, I had held Will for about an hour. It was amazing, the most overwhelming thing I've ever experienced. It's one thing to hold your newborn son, it's another to get the chance after seeing him struggle for six weeks and not be able to do much more than cup your hand to his head in the hope that it will be soothing. Here I'm holding him as they took him out of the bed just before I "kangarooed" him. More photos to follow. Suffice to say that this was about the best birthday present I've ever received.
Will continues to rebound from his CO2 problems, and the result is that the aforementioned "jackhammer" effect of his ventilator has been lessened again. He seems to be settling in to a bit of stability, which as always is relative to the fact that he still is in the ICU and considered to be critical. Though he has had some trouble digesting his food lately, he'll get more in the coming day because they think he simply might not be getting enough now to trigger digestion. He's at 816 grams today, down from the past two days thanks to getting rid of some built-up fluid after surgery. All in all, he's having a pretty good day.

Sunday, December 05, 2004

OK, considering what it has meant at various times here, perhaps the word "crash" was too strong a word for what Will experienced today. I meant it to be a commentary on what Dr. Dagle had said -- he predicted no further fall-off after the operation (specifically using the word "crash"), and Will responded by having a fall-off in one of his important stats. But by the time we came in tonight, they had turned the jackhammer aspect of the ventilator down a couple of notches, and he seems steady and content in all other areas. As I have said before, however, we know they do what he needs at any given time to get back to even, but sometimes those things are painful to watch. He didn't seem to mind it much, but it's still hard to watch him shake like that. Imagine being on one of those vibrating back massagers that's as big as your body and having it on high from the time you get up until, well, next Tuesday, and that gives you some idea what this is like. Might sound soothing at first, but believe me, you'd get tired of it. On the spectrum of things that would bother you, of course, that would be a couple spots below invasive heart surgery at 37 days of life, so I guess it's all relative for a tough guy like Will.

I'm heading back in to see him again (this is a special mid-visit post because I was worried that people might get the wrong idea about his condition from my last post). Right now, Mary is reading some Dr. Seuss to him for a bedtime story. It's never too early to start.
You would think the NICU doctors would have learned by now: Don't say that things are going well and expect them to stay that way. Not in front of Will, anyway. History has proven otherwise:

Dr. Roghair said he thought Will would have a good night. Will crashed.
Dr. Klein said he wasn't worried about Will. Will crashed.
Dr. Dagle said Will probably won't have a post-operative crash.

Yes, Will crashed. A bit. After more than 48 hours of stability, his CO2 numbers were troublingly high just around dawn today. As was the solution the last time this happened, they turned up the ventilator setting that shakes him (and by extension helps him to shake off the excess CO2). That meant it sounded like someone was operating a jackhammer in his room when we came in for our morning visit. The good news, however, is bountiful. Where in the past a CO2 problem was only one of his worries, today all of his other numbers were in good ranges. And, the increased amplitude (the rate he shakes, basically) seems to be doing the trick. His numbers dropped (which is the desired direction) and he seems to be stabilizing. We hope by the time we go back to see him again tonight they will have turned that down a bit.

Beyond that, he had a bit of trouble digesting his food the last two times they fed him, but they admit that might be a function of not feeding him enough. The 2cc he gets every eight hours right now might not be a sufficient quantity to trigger his stomach to actually do something with it. Or, the fact that he was on morphine until this morning might have slowed things, too.

It was tough seeing him have some troubles after being lulled into thinking he was just going to waltz through surgery relatively unscathed, but overall he still is doing very well. Sometimes it's difficult to look beyond the minute-by-minute fluctuations we see when we're there for a long visit and focus instead on the big picture. When we do take that broad view on a day like today, we realize he's doing OK despite some setbacks.

Saturday, December 04, 2004

In the parlance of the NICU, Will is "two days post-op, sitting at saturations of between 85 and 95 at FIO2 between 30 and 50, etc..." In the parlance of Will's blog, that means he is having a good day.

Just 48 hours after what we consider to be pretty invasive surgery, Will is doing really well. He still is resting comfortably, seemingly with little if any pain, and really seems to have benefited from having the PDA taken out of the equation. Some of that might be the morphine and other things they gave him to help him ease back into the real world after surgery, but the doctors today said that they don't expect any sort of post-operative "crash" at this point.

So, hoping that is indeed the case, we now wait in anticipation of the benefits of having done the surgery. We'd be OK if Will could pass a few days (or weeks) of drama-free, slow, steady growth.

Friday, December 03, 2004

A quick note before bed. Will continues to do really well tonight. They began weaning him from the morphine this afternoon, and he seemed to tolerate that well. He also ate for the first time in a couple of days. He had a visit from my parents Thursday and today, and tonight Mary's parents came for a visit and will be here tomorrow. That means lots of grandparental attention, which can only be good for a little guy recovering from surgery.
Will continues to shrug off surgery like it was no big deal, sleeping peacefully, holding his oxygen and acting as if everything is OK in his world. Then again, that could be the morphine. Whatever it is, we'll take it. As the pain medications do wear off, he might still have some distress and need more support, but we'll deal with that if and when it comes. For now, recovery and stability are the goals. He'll restart eating again this afternoon -- slowly at first -- as he quickly gets back to what constitutes normal for a baby 30 weeks old gestationally.

Thanks for all of the notes and other shows of support. It seems we weren't the only ones holding our breath yesterday afternoon. As has been the case from the start, Will is proving to be the toughest of all of us.

Thursday, December 02, 2004

Seeing Will tonight, you'd never guess what he went through today. When we first came in the room after his surgery, he looked like he'd just run a race: he was splayed out on his bed, arms and legs spread wide, his mouth hanging open and what little hair he has was sticking up. Once they got him straightened up, however, he seemed like the same Will we'd left before, save for a new big bandage on his side and a tube to drain the incision. When we left tonight, he was sleeping peacefully, still not needing much oxygen and doing pretty well. They have warned us that he'll probably have a tough night, and maybe a rough couple of days as he recovers, but if so, he was definitely easing into that tonight. The good news is that the PDA was small and easy to tie off, so now he can push that hurdle aside and work on getting bigger and letting his lungs grow.

This was an exhausting day, but one with a happy ending.
The surgeon just came in to tell us that the surgery is done and that Will tolerated it really well. His blood pressure and breathing were good throughout. When they were inside, they saw that his lungs look OK; some expected damage brought about by the respiratory distress he has been facing, but otherwise healthy and ready to grow. We'll get to go back and see him in about half an hour. We let out a big sigh of relief at the news.
Will's surgery is about to start. He was quiet and breathing well before they started getting him ready. It was so tough to leave him, but he's in good hands.

Wednesday, December 01, 2004

While Mary and I are nervous about tomorrow, Will seems to be taking things in stride. He continues to do well, holding his oxygen, moving fluid through his system, digesting his food and staying calm. That bodes well for tomorrow. Better to do the surgery when he's strong than to wait until he's so sick that it becomes a matter of survival. Our minds are on his recovery, and we want that to come as quickly and smoothly as possible.

People have asked why he needs the surgery if he is doing so well. He is doing well, based on where he is developmentally right now. But he should be further along than he is, and his lung development is being held up by the PDA and the inefficiencies it causes. The doctors told us his heart has to work twice as hard as it should at times to make up for the fact that it must pump blood twice -- once when it sends it out, and again after that blood, shunted back to the lungs after it has already been oxygenated, comes back to the heart before going out to his organs and extremities. With the PDA sealed up for good, things will work efficiently and will help him to concentrate on growing.

We have heard from a lot of people wishing us well, sharing good thoughts and prayers, and we want to thank you for the support. I have said it before, and it has never been more true -- this is the toughest thing we've ever been through, and knowing that many, many people are out there lifting us up will help us to deal with what tomorrow brings.

I know people will be checking on Thursday to see how Will comes through the surgery. I'll try to get to a computer to let everyone know when the surgery begins and again when we're able to get back in and see him after it's done.
We talked with the surgeons this morning about Will's surgery, and while we wish he didn't need to go through this, it helped to discuss the procedure and to see and hear the confidence with which they speak. There are risks involved with this, of course, but this surgery is fairly routine for premature babies, it seems. There is nothing routine for a 1 lb. 10 oz. baby (yes, Will has bulked up again thanks to some more fluid retention), but he seems to be doing well and resting comfortably, as if he knows that he's got a real battle to fight tomorrow. His situation is a real Catch-22 -- Ideally they would wait until he is bigger before doing this, but he needs the surgery so he can get bigger. Tomorrow is going to be a really long day, followed by more that promise to be just as long as we watch him recover. Thanks for all of the support. It helps all three of us to get through this.