Tuesday, November 30, 2004

I have good news and bad news tonight. The good news is that Will continues to do really well, keeping his oxygen high, getting rid of excess fluid and digesting his food. The bad news is that his PDA has returned. We thought this had been dealt with a couple of weeks ago after his last course of indomethacin, but the duct opened up again. I won't explain here what that entails; click here to read about the initial diagnosis. Why did it re-open? Who knows. His doctor tonight said he gave up trying to predict what Will is going to do because he just seems to follow his own course.

To deal with the PDA, they have scheduled him for surgery on Thursday afternoon. The surgery entails making a small incision on the left side of his back just under the arm. They will gently spread a couple of his ribs apart, and then close the duct with a stitch or by placing a small clamp on it. The doctors have explained that Will's heart is about the size of the tip of your pinkie finger, and the duct is a tiny vessel coming off of that. So, it's a delicate procedure, but one they already have done successfully on two other babies here just in the time Will has been in the NICU. They will do the surgery right in his room so he won't go through the trauma of being moved, and the whole thing from the time we leave the room until we can come back to see him will be about three hours. An hour or so of that is actual surgery time. He will be sedated with morphine for pain and a muscle relaxant to keep him still.

Back to the good news: Because Will is doing well, it means he is in a much better place when facing this surgery than he was two or three weeks ago when they first mentioned it. He is bigger, he is doing more breathing on his own and he recovers much more quickly from stimulation at this point. We're scared about this procedure, but he is tough, and needs to get this problem behind him once and for all so he can continue growing.

We have been told that he'll have a very rough couple of days of recovery after the surgery, so we need to work hard to remember his good days and know that this is all on the path to getting back to having them more consistently. Assuming he stays where he is now up until the surgery, that will be easy to do.

So, that rollercoaster keeps roaring along. We just grab on tight and ride it, hoping that someday soon someone will flip the lights back on and let us off of this thing. We appreciate the fact that so many people are willing to hop on and ride it vicariously with us through this site. I'll try to keep this updated as much as possible, but the next few days might be a bit sporadic. My sole focus is going to be on Will.
The doctors have determined that Will did pick up an infection, probably in his breathing tube. The one they have in mind likes warm, moist places, so a breathing tube through which warm, moist air is pumped would seem to be an ideal breeding ground. Because they caught it quick and gave him antibiotics, he should recover just fine. That might explain his recent dip, and the fact that he seems to be doing much better today. As for the eating, let's just say we know it's going in OK. We're just, um... waiting to see when it will come out. In the grand scheme of things, I'll take that problem over breathing problems any day. Per the usual, they are watching a whole host of things, constantly tweaking each of the things he gets as they react to (and anticipate) changes to his system. One of the doctors referred to it once as a "tune up," though it seems more like plate spinning at times.
This won't be the full-fledged morning report, just an update to let everyone know that Will had an easier-than-anticipated night. He sat at about 55 percent oxygen most of the night, much less than we would have anticipated. He also digested his food, which was a good sign. We'll know more after the doctors come around on rounds later this morning, but at least he's headed in the right direction.

Monday, November 29, 2004

It's going to be another real tough night for Will. His oxygen needs are high, and he isn't tolerating much in the way of stimulation. Our best hope is for him to have a real quiet evening of rest. The nurses reminded us tonight that Will is a tough little guy -- tougher than his Mom and Dad put together. That was clear today when he was in obvious distress. It just rips your heart out to see him hurting and not be able to do anything to soothe him. We were able to do some parenting tonight, however, by watching him closely while they kept his oxygen level a bit lower than they would have otherwise. Knowing that we would alert them at the first sign of a freefall in his saturation was enough to make them feel confident to do so. He kept his saturations high the entire time, which meant a bit of rest from the highest levels of oxygen. That said, it will be up and down all night, I'm sure. He's going to need some help over the next couple of days, so keep those thoughts and prayers coming.

And while you're at it, say a couple for our friend John Riehl. John and his wife Nicole are good friends (we were a part of their wedding a couple of weeks before Will was born), and they are at UI Hospitals now as well. John had major surgery today, and will be at the hospital for several days recuperating. We popped in for a short visit tonight, and while John was groggy, he was in good spirits. He's just a couple floors below Will, so just send those good thoughts toward the John Pappajohn Pavilion and let John and Will bask in all the well wishes as we hope they both recover quickly.
Will is having a tough day today, having real trouble keeping his oxygen levels where they want them. He seemed agitated this morning, and they gave him some morphine in the hope of settling him down. It seemed to work, as he quieted down by noon. As usual, a downturn is met with many different possible diagnoses; the nurses think one thing, the doctors another. For their part, the doctors seem to want to help push Will through this. They want to continue feeding him, albeit at a slower pace than before, and started antibiotics in case he has developed an infection (yes, he just ended a course of antibiotics on Saturday), and seem content to let ventilator changes help him to pick up the slack. Some of this is expected, of course, now that he's off the steroids. The exact same thing happened the last time he came off a course of dexamethasone. He crashed, they put him on antibiotics and he improved for a couple of days. We just need to keep that in mind and hope for a similar turnaround this time.

People have likened this to a rollercoaster, but someone along the way was even more accurate: It's like a rollercoaster in the dark. You know the ups and downs are going to come, but you can't see them ahead and can only wait to see which way you're headed at any given moment.

Sunday, November 28, 2004

There is a new exercise program in the NICU called the Will Kenyon workout. It involves being Will's nurse for the night. You set his oxygen level at 40 percent, leave the room, hear his sensors beep as his saturation level drops, go in to turn him up, leave the room, hear his sensors beep as his saturation level goes too high, go in to turn him down and so on and so forth. Will was like that last night, and while we were there tonight, he was doing it again. He gets comfortable and breathes well, then after a while, he starts to fidget and starts breathing poorly. That causes his oxygen saturation to yo-yo up and down. So, while he is doing well overall, his immature lungs continue to need a lot of work. It will take several weeks yet before he's out of the woods, but every day he can grow means a few more healthy lung cells.
Will is coming down off of the dexamethasone a bit, but seems to be holding pretty steady today. The doctors were upbeat about his status, with Dr. Klein going so far as to say he wasn't worried about Will --today, that is, and that is of course still a relative thing. They're always worried about him; just not any more than usual right now. He continues to get 4cc of milk despite a few residuals this morning. Dr. Klein said the 20 grams or so he gained in weight between yesterday and today are likely from tissue growth rather than fluid retention, which is a good sign. As with all optimism about Will, it is guarded and might be short-term as things change from hour to hour or even minute to minute. But we'll take what we can get.

Saturday, November 27, 2004

Will has a relatively short to-do list: Breathe, digest and pee have been fighting it out among the top three for the past few weeks. He never really gets to cross them off because they are constantly required tasks, but today he accomplished all three with little problem. He still is breathing well tonight, he digested his 4cc easily and he got rid of all the fluid he'd taken on and is again gaining weight the right way. He is sitting at 674 grams tonight, an increase of 19 grams over his weight at midnight (that's a 0.7 ounce gain for those of you keeping score). That's his non-fluid-retention high, and he should be able to build on that as he continues to eat. After many days in his very short life where he had numerous medicines being pumped into his system, today three of the four things he was getting were to make him stronger: Lipids, breastmilk and his usual nutrition drip.

Lest we get ahead of ourselves, he still has a long way to go. He was breathing well, but his oxygen saturation would occasionally vary widely as he chose to sit a few breaths out (if taking a rest for a person with good lungs is "taking a breather," then what is a rest for someone like Will where it involves not breathing?). And while he is breathing more on his own, he does so still with a small part of his lungs. He'll be on his ventilator until he is better able to inflate his lungs on his own. He's a ways from that now, but he is definitely making strides.
Will continues to do well today, showing off for his Grandpa and Grandma Kenyon who are here visiting. We'll see how long this post-steroid honeymoon lasts. Dr. Klein noted yesterday that Will has "personality," which seemed like code for "has a mind of his own." Then again, he also noted that Will seems to like to party hard on Friday nights, paying the price with rough weekends, and so far that hasn't been the case with this one. He is a month old now, so maybe he's beyond that immature behavior.

They continued to increase his feedings again, up to 4cc every four hours. It took nearly a week, but he's getting back to where he was before this most recent episode. It's definitely a step in the right direction.

Friday, November 26, 2004

Another good night means another short post. Will continues to breathe well, so we had a nice, quiet visit with him. We'll see how he responds as the steroids wear off, but for now he's in a good place. That means all of us can rest and get ready for what tomorrow brings.
Will is having a good one-month birthday today, and gets to celebrate with some more food. After getting 2cc every eight hours the past couple of days, he's back up to 3cc every four hours today. We hope he is able to tolerate it better and can bulk up again. His yo-yoing weight went down a lot over night; he's now down to about 660 grams. He looks much better, however, losing some of the puffiness he had in the past couple of days. The doctors said they would like him to bulk up with muscle and tissue now rather than liquid, and we agree.

He ended his recent course of dexamethasone last night, so we'll see how that goes. Last time, he seemed to crash a bit in the days after it ended. Now that this course is done, his lungs will see some inflammation again, but the hope is that it will be less than it was before the steroids were given this time. The doctors said they would like him to get to a point where the rate of repair on his lungs is able to outpace the rate of injury, and hope he has reached that point now. If not, they'll continue to monitor the situation and give him more steroids in a week or so if needed.

Right now he is having a good visit with Mary's Dad and her brother, Joe, the fourth of five uncles and aunts for him to meet. He's on his best behavior for them, of course.

Thursday, November 25, 2004

Anyone who knows me knows that adjectives like "sappy" and "sentimental" don't usually describe me, but on Thanksgiving, you'll have to forgive me. On a day when we had planned what would have been our last road trip before hunkering down for the winter to wait for Mary's Feb. 12 due date, we instead spent much of the day with our son. We didn't expect him so soon, but now that we have him, we couldn't be more thankful. And we can't begin to express how thankful we are to all the family, friends and strangers who have helped us in many ways over this past month. In particular, we are thankful to everyone at the UI NICU who have all taken such good care of Will. We'd be by his side 24-7 if we could, and it helps to know he's in good hands when we're not there to see for ourselves.

And Will? Right now he's thankful for dexamethasone. It's a real wonder drug for him, helping him for a second straight day to breathe really well and to keep all of his stats right where they should be. He'll finish this current course tonight, and we hope the effects will last a while. They don't give it regularly like they once did because long-term use has been shown to cause some developmental problems. These shorter, less-frequent courses are fine, however, so it's nice that he can get some help like this now and again.

The NICU was a flurry of activity tonight; one baby across the hall was getting surgery, while word was they were expecting another 24-weeker later on. It seems as if the babies synch their schedules at times like this. Will is quiet at a time when the doctors need to be elsewhere, while others have had quiet days when Will needed the attention.

Tomorrow is Will's one-month birthday (different from the four-week birthday he celebrated on Tuesday... we'll let him celebrate every day at this point), and that's a pretty amazing milestone. He has a few more to go at the hospital before he gets to come home, but having one month under his (diaper) belt is big. He's come a long way.

Wednesday, November 24, 2004

While Will was denied the chance to truly feast as he heads into Thanksgiving, that did not dampen his spirits. He donned a pilgrim hat and celebrated in style. Thanks to Aspen Lohman, co-owner of the Corridor Business Journal, for Will's festive accessory.

He also celebrated by keeping his oxygen saturation up all day and into the evening. He's back to a point where he's on relatively few drugs, and once he gets rid of some fluid, can spend more of his time eating again. He weighed a record 772 grams today (before a couple of praise-worthy diapers), but should slim down a bit in the next couple of days again.
It's not exactly in keeping with the Thanksgiving spirit, but it's what's best for him: They've decreased Will's feedings to 2cc every 8 hours. He has a lot of fluid build-up because of his recent lung troubles, and until he gets rid of it, they want to ease up on his milk schedule. It sounds like a short-term thing, so maybe he'll be able to feast again soon. Otherwise, he's doing pretty well on the dexamethasone. His oxygen saturations are bettter today, and he seems more stable. One of the doctors went so far as to say he thought Will was going to have a good day today. We don't hear that often enough.
Will's uncle PJ down in Arizona was nice enough to point out that the link to dexamethasone in the post below took you to a veterinary web site. I have changed that link to one he suggested at WebMD, which offers a people-version of the same information. This, I pointed out, is why Will is being cared for at this point by doctors and not by his Dad. Though I'd guess that at this point in his life, Will's doses of dexamethasone and everything else are closer in volume to those used by a vet than by most doctors.

Tuesday, November 23, 2004

Parental fatigue is going to keep this brief: Will is doing well, the steroid doing its job to help him keep his oxygen level at a much more consistent (and low) level. He's up to 5cc of milk every four hours as well, so while he started the day slowly, he seems to be ready for a nice quiet night of sleep on a full belly tonight. I know the feeling.
Sorry for the lack of an update last night. I know people tend to think that means we were at the hospital all night dealing with some terrible crisis, but this time it was really a factor of time. I'm back at work pretty close to full-time now, and the holiday week means we must put out our paper in three days instead of four. That meant I needed to do writing for which I'm paid when we got home from the hospital last night.

That said, Will did have a difficult night, needing much more oxygen than he has recently. They shifted him to a different ventilator that is more like what most people probably think of when they hear the word "ventilator." It helps him to take deeper breaths when he is breathing on his own (which he is doing more and more), and chips in to breathe for him when he is not. It was transitional, helping them to assess what he needs, and they then put him back on the high frequency ventilator shortly thereafter. This one gives him several tiny puffs of air each second, and shakes him a bit to work off the carbon dioxide. (I'll try to do some reporting in the next couple of days on this so I can better explain what this machine really does for him). Overnight they gave him more surfactant to help him breathe as well -- he surely holds the record now.

Because he was still having trouble holding his oxygen levels this morning, they decided to give him another course of dexamethasone, the steroid that helps decrease the inflammation in his lungs. The last time he received this, when he was at his worst about 10 days ago, he rebounded quickly and had three or four really good days of stability and easy breathing. We hope this time it will have a similar effect. He is stronger now than he was then, so he starts from a better place and it should be better for him.

The good news is that the attending physician in the NICU right now is Dr. John Klein. If you click on the link and check out his clinical interests, you see they line up pretty perfectly with the very things Will needs most now. Dr. Klein wrote the instruction manual for the ventilator that Will is using, so it is reassuring when he is the one who comes in to tweak it and make it work better to help Will. That's not to say any of the doctors and nurses have been anything less that great. Each seems to do what Will needs at any given moment. It's just a further indication of how lucky we are to be where we are.

Monday, November 22, 2004

Not much to report today, which is a good thing, I think. Will is much the same as he has been for the past few days: He keeps his oxygen levels high much of the time, but lets them drop off quickly every once in a while and needs help. The doctors think this means he is doing more on his own, but then gets tired and needs more assistance while he rests. He continues to eat well, and the rest of his vital signs seem to be stable. For now, he needs to sleep and eat as much as possible, so he can keep his strength and grow. Every day he does that is a step in the right direction.

Sunday, November 21, 2004

A quick note and then I'm off to bed. The week may have gone quickly, but that doesn't mean it was any less exhausting than others. If anything, Will has more energy than either of us; they gave him some morphine tonight to settle him down so he would quit fighting against his ventilator. He gets stubborn sometimes, it seems, and doesn't want to let it do its job.

He was good while he had visitors, however. Mary's mom and her sister, Bridget, visited Will this afternoon and he was well behaved much of the time. He shows off for visitors and the doctors, saving his highs and lows for Mom and Dad. We did get to see one good high -- his weight is up to 677 grams. Not his official high, which was 740 grams during his fluid-retention phase early last week, but certainly the high when you consider this one is all Will.

This week seems to have flown by, for us, anyway. Last weekend's downturn for Will seems long ago, as he has put several more days behind him. He's had a couple of scary moments since, but today seems to be doing pretty well. They increased his feeding to 3cc every four hours, so he should continue to get bigger as long as he stays relatively stable. That's always the big "if" with Will; the doctors say he is in charge, and they'll respond to whatever he does. Lately, it seems, he has enjoyed making them scramble every once in a while. He always recovers well, as if to say, "Just making sure you were paying attention." Believe me, we are.

Saturday, November 20, 2004

We altered our schedule to allow for football traffic on both ends of our visit today, wisely leaving before the happy fans spilled out of Kinnick Stadium after the Hawkeye victory. That left us at home mid-evening for the first time in weeks, however, and we didn't know what to do with ourselves. So, once it was safe to return, we got back in the car and headed over to see Will. It just didn't seem right to not say good night. He was doing pretty well, dealing as usual with blood pressure and breathing issues. Nothing too alarming, just things they'll keep an eye on overnight much as they do every other night (and day). We made the right choice in going to see him. It was the perfect way to end the day.
We're here on a quiet Saturday in the NICU, where outside it is anything but quiet as Hawkeye fans stream into Kinnick Stadium to watch the game against Wisconsin. It's easy to feel disconnected up here as we look down on the tailgaters and black-and-gold clad faithful, but enough of the real world seeps in to keep us sane, and it actually helps to be isolated because it keeps all of our focus on Will.

He is doing OK today; still dealing with breathing issues, but holding his own for the most part. We are constantly reminded that even at times when he seems calm and peaceful, he is "critically ill" in the words of the doctors as they go on rounds. For so long, our main concern was watching his oxygen levels, but now as other problems surface, we have even more numbers to watch. How is his CO2 level? What is his pH? How about his potassium, glucose, sodium and electrolyte levels? There are targets for each of these, and when he slips above or below those ranges, the doctors take action.

It is frustrating, because he can seem content until they come in to undertake some aggressive treatment that seems to upset him, and not until they are done do we realize that they simply anticipated the fall off and were actually taking steps to reverse the trend before it got dangerous. Last night was an example of that. He seemed fine; then they came in and scared the heck out of us with some extreme treatments that seemed to make him worse. But once they explained how dire things could be if they let him continue a slide that was only visible through readings of his CO2 levels, their frantic nature made sense, borne out by his quick recovery. Will continues to let us know how unstable he is as his system makes minute-to-minute changes that require significant alterations to his care. So far they have been able to react to each of these instances and get him back to a more stable state. We just hold on here by his side, cherishing the quiet moments, hoping they will continue.

Friday, November 19, 2004

In addition to the pale skin he is almost assured of having, perhaps Will is going to inherit something else from his folks: the urge to write. How else to explain his flair for the dramatic? It seems as if our son -- before even being able to hold a pen -- is crafting his own one-man show, an autobiographical performance called "I, Will... Or Maybe I Won't."

Tonight's segment in this on-going saga was a curveball. After dealing with up and down oxygen levels for the past three-and-a-half weeks, he's now dealing with carbon dioxide levels. We've got him remembering to breathe in, it's breathing out that's the problem now. We came to see him early this evening, and he seemed to be doing fine. His oxygen levels were good, he was continuing to tolerate his milk, and seemed to be resting comfortably. Within the hour, he had a room full of doctors and nurses increasing his ventilator settings significantly, taking frequent blood gas samples and giving him more surfactant. His CO2 levels had been headed toward dangerous levels, and they were working to quickly bring those down. They did, and by the time we left at 11 p.m., he'd had his third good blood gas sample in a row and seemed ready for a quiet night.

Breathing problems will continue to be a problem for some time for Will because his lungs are so immature. The good news, the doctor told us, is that as he continues to do well with his milk, and subsequently, to grow, he will be able to generate new lung cells that will slowly but surely help him to breathe better. That's a long process, but we're willing to wait. At least he can always get more surfactant. The doctor told us tonight that the record number of doses given to a baby is 13, and Will is sitting at 12 with the promise of many more days like this where he'll need it, so it's safe to say Will's name will be etched in the record books soon. While I'd hoped for highest vertical leap for a 24-week-old baby or learning to read before anybody else, the surfactant record seems more realistic at this point. All in good time.
OK, I seem to be on the mend a bit, so I'll try my hand at this again. Will is doing fine today, pretty much holding steady as he has been for the past couple of days. They continue to wait on his blood culture to see if he did have an infection, but it seems that if he did, the antibiotics did what they needed to do. I didn't stay with him long today, not wanting to give him a cold on top of everything else (though I'm hoping it's just bad sinuses brought on by our lovely weather -- get ready for it Will... you'll inherit the good with the bad), but he seemed stable. As Mary mentioned last night, his weight is up, and it seems to be all him this time around.

He'll visit with Grandpa and Grandma Kenyon today, and then have a quiet Saturday, we hope. All of the excitement will be outside, as the Hawkeyes play Wisconsin in their last regular season football game. Will would have a good vantage point for the game from his 6th floor room, if only he could see more than about 10 centimeters in front of him. Maybe next year.

Thursday, November 18, 2004

John is feeling a little under the weather tonight so I'll try my hand at this blogging thing. I think he'll be better tomorrow so fans of his writing have nothing to fear. Between taking care of Will and me I think he's finally just worn out.

Will is still doing fine tonight. He can't seem to make up his mind about what level of oxygen will keep him comfortable. He'll seem settled at one percentage but then after a little while his saturation drops and the nurse has to come in and turn it up higher. Then it only takes a few minutes until the saturation climbs higher than the acceptable range, so she has to come back and turn it down. We joke that it's just the beginning of a lifetime of attention-seeking behavior. (You know those first children--always needing to raise a fuss. Now second children on the other hand...) Still, if that's the worst he's doing, things are going pretty well. He got weighed a little early tonight (usually that's part of his midnight routine) so I can report that he's up to 635 grams. That's real weight, not like the fluid retention of this time last week. They're also going to increase the calories in his nutritional fluid so between that and the breastmilk he should be able to get a little bigger. Stay tuned.
It was another quiet morning in the NICU for Will. He seems to be breathing pretty well, and he started getting milk again at lunchtime. Last Thursday started much the same way, however, so we're always a bit wary of being lulled into a false sense of security with him. One day at a time...

Wednesday, November 17, 2004

We all know what Will tends to do when he is over-praised, so I won't go so far as to say he's doing great, but compared with where he was last night, he's doing, um, very well. That's a qualified "very well," as we've all grown to expect. He was holding his oxygen like a champ for most of a visit tonight, but at times he still seemed to forget that his to-do list includes both peeing and breathing, and would let the saturation drop. He recovered much more quickly tonight from those episodes, however, and even tolerated some gentle foot tickling from Dad. He still is on three antibiotics as the doctors wait for his blood culture to come back so they can determine whether or not he has an infection, but he seems much closer to where he was before last night's spell, which was a pretty good place to be. He's not all the way back, but he's moving in the right direction. He even gained 10 grams over night, and it doesn't seem to be all from retained fluid this time. In Will's world, that's progress.

Because all of the previous photos of Will have already moved off of this page and into the archives, I thought I would post a couple more. These are from early yesterday, when Will would tolerate being messed with a bit more. Here, I'm changing his diaper, while Mary takes his temperature (with the "under the arm" method). Notice the stylish matching rubber ducky sheet and blanket. They take good care of him up there.
Will is about the same today as he was when we left him last night -- he could be better, but he definitely has been worse. His blood pressure seems to be stabilizing now that the dopamine has kicked in, and the antibiotics and a different steroid seem to be helping him to keep his oxygen up. He is proving the doctors right when they say it can be an hour-to-hour, sometimes minute-to-minute sort of thing.

He did get the palate plate last night, though we weren't around to see them put it in. It's one more thing, like his goggles, diapers and other the miniature tools of the trade that we'll one day be able to show him and say, "Yes, you really were that small."

Tuesday, November 16, 2004

Will must have gotten the mistaken impression that people weren't paying attention to him while he was doing so well, because he acted up tonight. We received our first phone call from the NICU to let us know about his condition, which was a little scary, to say the least. We headed down to find his oxygen and ventilator needs back up and his blood pressure low. After a couple of days off most of his medicine, he's back on quite a bit of it -- the dopamine returned, as did some surfactant, and he is also on three different antibiotics.

They have two possible scenarios to explain the downturn: Either he dropped off more than expected after a few days of benefit from the course of steroids he received over the weekend, or he picked up an infection after they stopped his antibiotics. If it's the former, they'll need to continue tweaking his oxygen and ventilator settings and give him more surfactant as he recovers. If it's the latter, the antibiotics should do the trick. They gave him three to make sure that they would knock out whatever it may be that he has, and will be able to more specifically target it in a couple of days when blood cultures come back. Why, you might ask, do they not just leave these tiny fellas on antibiotics all the time? Well, when I asked that, the doctor said that too much antibiotic might leave him susceptible to fungus, which isn't fazed by the drugs. If they keep him off antibiotics when he doesn't need them, the thinking goes, he'll be better able to fight that off. As with everything, they must weigh the good and bad of each possible course, and select the things where the good outweighs the bad. That always seems to leave us fighting the bad for a while after the medicine has done its good, but so far that has left him making slow progress in a two-steps-up, one-and-three-quarter steps back sort of way.

By the time we left tonight, the doctors were saying they were pleased with the way he had recovered, and hoped the worst was over. We hope so. These wild ups and downs can't be easy for Will to take, so we'd really prefer some more of those quiet days.
Will continues to do well. He is down to 586 grams now, much closer to fighting trim for this featherweight. The only planned excitement today will be for him to get a palate plate for his mouth. The tube used to help him breathe can, if left in a long time, create a groove in the top of his mouth. They install a tiny plate, kind of like a retainer, we're told, to prevent that. Given how small Will is, I'd guess he'll have one of the smallest of those things ever made. If we're around when they bring it, we'll try to get a picture.

Monday, November 15, 2004

Just a quick note because I know the lack of a post late Thursday and early Friday tipped people off to the fact that "no news" does not necessarily mean "good news." Using that logic, consider this "some news" which means "great news." Will still is doing really well. The only thing he needs to work on at this point is digestion. He went without milk for so long that his system doesn't seem quite ready to deal with it. That will come eventually. In the meantime, he'll likely dip close to -- if not below -- 600 grams at his midnight weigh-in, because he continues to generate some soggy diapers. Again, that's good news.

When we left him, he was sleeping quietly on his back after some quality time on his tummy again. Some of the other babies on his floor seemed to need the nurses' attention more tonight, and our polite little guy was more than happy to cede the attention.

I almost hesitate posting yet more good news, fearful that I'll somehow jinx things, but Will does continue to improve. His weight was 621 grams this morning, which means he lost about 1/7 of his body weight in the past 24 hours. That's a good thing for those of you just tuning in, because it means he really has moved most of the excess fluid through his system and seems to have recovered nicely from the ill effects of the indomethacin used to close his PDA.

They continue to turn down his ventilator settings because his lungs are inflating well, and his oxygen needs are low. That is partly (if not mostly) due to a course of steroids he received over the past three days to reduce inflamation in the lungs caused by the ventilator. Once that wears off, his ventilator and oxygen needs might rise somewhat. The steroids did what they were supposed to, however, by helping him to get through that rough couple of days heading into the weekend. I've been trying to keep track of all of the things they have given him thus far, and have an incomplete count of 14 different medicines. No wonder he was retaining fluid. Even at 1cc at a time, that can add up.

We'll see how he tolerates that milk, and hope he can continue to get it and start bulking up the right way. For now, we love every easy day he can put behind him, passing his days sleeping, eating and growing. That's better for us, too; it's amazing how tired you can get just worrying.

Sunday, November 14, 2004

We continually tell Will that it's OK for him to be the quiet baby on the floor, letting the nurses scamper about to deal with the other kids while he sleeps peacefully. He seems to be minding us pretty well. Save for the need for frequent stops at his room to change diapers today, it seems our little guy was pretty low maintenance. He was tolerating his food, dealing well with stimulation and not minding the absence of sedatives in his system. I'm sure everyone will welcome the chance to take a deep breath and get ready for another week in Will's world, where there are few boring moments.

Let's get right to the good news: Will continues to pee. A lot. He had a very productive morning, and the result was a weight loss as hoped. He's a more svelte 712 grams. He has plenty more to lose -- the doctor said today he'll probably get below 600 grams over the next few days before starting to gain again -- but will soon be bulking up because of more good news: he ate for the first time this morning in more than a week. It was just 2cc of milk, but that was a big step after not having had any for quite a while. In addition, he's been taken off some of the drugs he's been on, including the morphine and ativan used to keep him sedated. That, coupled with lower oxygen and ventilator needs means Will is in a much better place than he was before. Anyone keeping up with these postings knows they have read that before, more than once, and likely will again. Don't ease up on the prayers and good thoughts just yet. But for now, Will is doing well. And when he's doing well, we're doing well.

Saturday, November 13, 2004

Today, I took the time to read back through some of these posts to remind myself of Will's progress (the days all tend to blur into one), and I was struck by how up and down things really have been. It's hard to remember the good days sometimes, particularly when we're looking at a hard stretch. That's why today was so refreshing and rewarding. Will continues to do well, holding his oxygen, keeping his blood pressure up and, in a report that would likely mortify him, peeing like crazy. That last one might seem trivial, but its really the most important thing he's done in the past few days. He has to get rid of that fluid somehow, and this is really the only way. Doing that gets rid of pressure on his chest, which makes it easier for him to breathe, which means they can turn down the ventilator, which means his lungs aren't pushing on his heart, which means it beats better, which means his blood pressure is up, which means his kidneys work better, which means he can... well, you get the picture. He may be small, but that is one complicated little system.

Those who aren't fascinated by in-depth discussions of pee can skip this part, but I did some math just now, and it paints an interesting picture. He weighed 730 grams today, and an ounce of liquid weights 28 grams. So, to get back to where he was just a few days ago (an already slightly bloated 618 grams on Monday, for example), he'd need to get rid of four ounces. There are about 30 ccs in an ounce, and he got rid of just about that much over the course of Saturday. So, he'll need at least another three days at this rate just to get rid of what he took on as an effect of the indomethacin earlier this week, and that doesn't factor in any fluids he continues to get for nourishment and such. They told us this is a minute-to-minute thing marked by very slow movements in either direction, and this definitely shows that.

This was one of those good days, something we'll need to remember the next time things aren't so good. We'll have more of both kinds of days, and need to remember that it is a long journey headed slowly upward. The bumps along the way are often terrifying, but Will is proving himself to be an awfully tough little guy. People tell us that we're brave, but he's the one doing all the work.
Will continues to respond to the various treatments started yesterday, improving enough that the doctors' latest warning was that it would be hard on him to swing too far the other way. It's always something... And it's all relative, of course. "Good" to Will really means "less sick." However, he definitely is taking, pardon the pun, baby steps in the right direction. He has a lot of fluid to get through his system -- he still has a double chin and quite a belly -- but he has started to work on that, too. Mary and I never thought we'd be so happy to change a diaper. The rollercoaster ride continues, but for today at least, it has leveled off.

Friday, November 12, 2004

Well, whatever all of you did, it worked. Will responded well to everything that was being thrown at him today. He is far from being out of the woods on this, but he was so much better today than yesterday. Before, and even into the late morning, the slightest disturbance would send his oxygenation levels spiralling downward, and it would take a good half-hour for him to recover. When they're coming in to do something every 15 minutes or so, you can imagine how taxing that is on such a little guy.

This afternoon, however, he was much better able to tolerate these interruptions. From about 1:30 p.m. until after 3, he underwent a kidney ultrasound (which had good results), another heart ultrasound (the PDA is still closed), an X-ray and a visit from the hospital's Catholic chaplain to be baptized, in addition to all the usual diaper changes, blood draws and other things. Through it all, he kept his oxygen really well, and seemed to take it much more in stride. A constant morphine drip helped, of course, but it seemed as if he finally is responding to some of these drugs; it seems each is designed to do something on its own as well as to counteract some ill effect caused by everything else. He has all four grandparents in town keeping an eye on him as well.

So, he's in a lot better shape now than he was at this time last night, and better than we had a right to hope for given the way the doctors were talking this morning. It continues to be a struggle for him, but each day means his systems are that much more mature. We've been taking it a day at a time; the doctors today were talking about taking it minutes at a time. However you mark it, we just keep moving slowly forward.
This will be a quick post, and you probably won't hear from us again for a while. Will had a very rough night, his toughest by far. Today is going to be a struggle for him. The doctors continue to adjust his treatment as they look for the things that will best help him through this, but they admit they must try many things at once and hope at least one works. He is simply so weak that any stimulation (such as changing a diaper, taking blood, changing his medicine) causes his vital signs to drop off, and it takes him an increasing amount of time to recover. They are trying to minimize those occurrences as much as they can, but when he is as sick as he is, that is difficult to do. He is holding fairly steady now, and Mary and I will stay with him today and tonight and for as long as it takes to see him through this. Your support has taken us this far. Whatever little extra push you may have to give, now is the time to give it. Thanks.

Thursday, November 11, 2004

Consider this a "no news is good news" update. Or rather, a "no news is not bad news" report. Will is much the same today as he was yesterday, resting quietly and waiting for the effects of the indomethacin to wear off. He had a quiet morning with his Mom, then saw fit to start flailing about in a rather agitated state once I came for a lunch hour visit. Parents agitate their children at various points, and I guess I'm getting a jump start on that.

Wednesday, November 10, 2004

Good news: Will's PDA is closed. We took a long path to get to this point today, but the fact that the medicine did what it was supposed to do and that Will can avoid surgery is very good news.

Mary and I went in this morning to find Will's oxygen up and his ventilator settings higher as well. We asked about the echocardiogram and the doctors told us they would take one this afternoon and that, once it likely confirmed that the PDA wasn't closed, they would schedule surgery. This was quite a turnaround from the past couple of days, and put us back on that rollercoaster to grapple again with the thought of Will going through a procedure. The doctors were candid about their changing point of view, saying that his continued trouble breathing seemed to point to an open PDA.

Once again, the echocardiogram proved otherwise. If there is a downside to this (and it's minor, of course) it's that the problems remain, but can no longer be blamed on the PDA. Some of his trouble stems from being so young and having rather underdeveloped lungs (and for being a boy; they have more trouble as premature babies than girls for some reason), while some of it is a result of having been on the indomethacin. Over the next couple of days Will is going to be given a diuretic to help him get rid of the fluid that built up during those treatments. This will relieve some pressure on his lungs and help his breathing. He also will be given Ativan, a sedative. This will help him to relax a bit and to not use so much energy fidgeting. The hope is that he'll use that energy instead to do more of his own breathing. These things should, with the PDA now closed, help him to improve over the next several days. By Friday, he may finally be able to eat again (though we've told the poor guy that before). He is still getting nutrition through his IV, just not the milk that will really help him to bulk up.

So, it was a tense day with a happy ending that left Mary and me a bit drained. We left Will early tonight to let him sleep, hoping we can get some, too.

Tuesday, November 09, 2004

Here is Will sleeping very soundly on his stomach tonight. As you can see, they have three of his four limbs somewhat restrained at all times. On his left arm is his blood pressure cuff (a Hewlett Packard no. 1, the smallest they make, of course); on his right arm is his IV line hidden by a knit sleeve; and on his left foot is the pulse-oximeter. He still can squirm quite a bit despite it all, and we assume that it will only make him stronger. His right heel sports a bandage to cover a spot where they stuck his heel to draw blood (an unfortunate side effect of losing the arterial umbilical line last week). The sensors on his back are the same ones he had on his front side in other photos, measuring respirations, temperature and heart rate.

Things were going well tonight. He was very still for much of our visit and his oxygen needs were low. The NICU was a busy place today and tonight as his neighbors came and went. We've told Will that we're fine with him being the quiet, low-maintenance one on the floor. It was a good way to celebrate his two-week birthday tonight.

They will take an echocardiogram tomorrow to see if the PDA has closed; no one seemed to be able to hear the heart murmur today, which was a good sign.

I've been remiss about giving updates about Mary, who was our other patient during all of this. She is doing well; still tired and recovering from both the C-section and the HELLP Syndrome, but doing remarkably well given where she was just two weeks ago. Frequent naps and even more frequent visits with Will seem to be good medicine.
Another quick note after an all-too-short visit this morning with Will before coming to work. The big news is that the umbilical line is out and he was placed on his stomach for the first time. He seemed to take to it right away; he promptly fell asleep and reassured Dad by breathing deeply, his little back rising up and down like a champ. He had more surfactant last night, and his chest x-ray for the first time today actually revealed what look like lungs (to my untrained eye, anyway). Before, the doctors would point to areas that were a slightly different shade of grey from the rest and say, "Those are his lungs." Now, they are more defined and you can tell he's getting better oxygen.

He got his last dose of indomethacin last night, and the nurses and doctors today say they can no longer hear the telltale murmur. It will take an echocardiogram tomorrow to know for sure if the PDA has closed, but we take this as a good sign.

I may take a photo to post showing his backside. He'd likely protest if given the chance, but since his front side has been documented so well, I think it's only fair. His Arizona cousins thought for a while that my initial statement to his grandparents that his size was "like a Coke can" (why this devoted Diet Pepsi drinker said that, I have no idea... I blame the stress of the moment) meant that he really looked like a Coke can. Now that we have disabused them of this notion with photos to the contrary, it might be nice to show them the rest of him, too.

Monday, November 08, 2004

A quick update after tonight's visit to report that Will continues to hold his own. His oxygen and ventilator needs were up slightly, but still much better than where he was 36 hours before. He'll get that third dose of indomethacin yet tonight, and then we cross our fingers. His other excitement for the day is the reason for the delay in receiving the indomethacin. An IV line was installed in his arm that will likely stay for several weeks. It was placed near his right hand and runs up his arm and into the area around his heart, and will be used to deliver medicine to him. After they put that in today, they decided to give him a blood transfusion (he's had a handful before this), which pushed back the indomethacin. This IV replaces a line that has been in the vein of his umbilicus since birth. The arterial line in that area came out about a week ago. Both are removed after a week or two because, while it's an easy place to put such a line, it also is an easy spot for infection to creep in. The good news for his breathing is that the removal of the venous umbilical line will allow them to put him on his stomach, a position that puts less pressure on his lungs and will make it easier for him to breathe.

An obvious question, or at least one that I was quick to ask, is, "Wouldn't this actually make it more difficult to breathe because he'll need to raise his body at the same time he fills his lungs?" The answer, obviously, is "no." As it was explained to me, while on his back, his organs put pressure on the diaphragm. On his stomach, there is less pressure on the diaphragm and it is easier for him to fill his lungs. In addition, it allows him to use muscles on his backside to breathe after so long relying on those elsewhere to do the work.

I haven't reported on Will's weight in a while because the scale readings have been a bit misleading. He is at 618 grams right now, quite a leap from the 531 of a few days ago. We have been assured that this bulking up is mostly fluid retention brought on by the indomethacin, which, in the course of constricting blood vessels, also slows down kidney function and urine production. He will, as we were told in easy-to-decipher medical lingo today, "pee most of that out" in the next couple of days. For now, it has left him with a bit of a double chin that I have been thoughtful enough to refrain from documenting photographically here.

On a final note for tonight, take a gander at the number at the very bottom of this page. People have checked in on Will more than 1,000 times in the past nine days. It is heartening -- and a bit astonishing -- to know how many people are keeping tabs on our little guy. We have received e-mails from friends of friends, relatives of co-workers and even people who have never met us but somehow found the site out there. Whoever you are and however you got here, keep pulling for him. It's working.
Well, that rollercoaster keeps rolling along, and for now, we're definitely headed up. After a very rough Saturday and Sunday, Will was in a much better place this morning. His breathing was much improved, with the level of oxygen being given to him at a low level (after being as high as it could get early Sunday) and his ventilator turned down to levels more in line with what he needed a week ago. The attending physician went so far as to say, "We all have big smiles today," when asked about how Will was responding to the indomethacin. That's about as optimistic as I've ever seen a physician get, certainly in the past two weeks. That said, the PDA still must actually close completely, not just most of the way as it has thus far, and there is a chance that it could re-open in a few days and still require surgery. We hope, however, that if that does happen, this time of calm and recovery would mean Will would be stronger and better able to tolerate it if it must be done.

He will finish this second course of indomethacin tonight and will probably get another echocardiogram tomorrow to track the status of the PDA. If it has closed, he'll put the feed bag back on (OK, it's really just a tiny syringe, but the little guy hasn't eaten in a long time) and try to bulk up a little bit. If it is still open, they'll discuss the merits of a third course vs. going ahead with surgery.

In less clinical news, Will had a good visit with his aunt Nora and Pop Pop (that would be Mary's Dad for those of you who don't speak Geraghty), and seemed to be showing off for them with his impressive breathing skills by the time they headed back to East Lansing and Evanston after a quick trip to Iowa. We'll see if he's filled with the same vim and vigor tonight when his visitors are just Mom and Dad.

Sunday, November 07, 2004

We were warned that being the parents of a premature baby was like riding a rollercoaster, but we really had no idea. Perhaps Will sensed this, and gave us a few quiet days to get used to the idea. Those quiet days are over for now. As anyone who has been reading this space regularly knows, Will has been dealing with significant breathing problems for the past few days. The source of much of this -- we hope -- is a patent ductus arteriosus, or PDA. The ductus arteriosus is a duct that connects the lungs to the aorta. In the womb, this duct serves a purpose. Outside the womb, however, it can be debilitating for the baby because it circulates blood that has already picked up oxygen in the lungs back through the lungs. This is inefficient and, as Will has shown, makes it much more work to breathe. It normally shuts after a day or two in a full-term baby. In premature babies it sometimes fails to close on its own. This is a fairly common problem.

The doctors prescribe indomethacin for this. It is a drug that constricts blood vessels, much like aspirin, actually, and it is given in the hope that it will constrict this duct. If it doesn't work, the next step is to surgically close the duct. It is small enough that a single stitch often will do it, but it obviously is quite invasive for such a little patient.

When we left the hospital today after our morning visit, we were told that Will's condition was deteriorating too rapidly to allow for further indomethacin treatment. Babies typically get three doses of this in each course, each subsequent dose given 12 hours after the one prior. They usually get two or three courses. After Will received one course, the doctors were afraid it would be too dangerous to wait to do further courses, and got us ready for the idea of surgery. An echocardiogram taken to determine the state of the duct, however, showed that the medicine was working; better than expected, in fact. As we leave it now, Will began a second course of the medicine tonight in the hope that the duct will close on its own. If it does, it will make his heart more efficient, and by extension help his lungs and breathing. He is far from being out of the woods on this -- Saturday night and into Sunday morning was his most difficult period yet -- but it is good news on a day where surgery once seemed the only option. Surgery may still be the ultimate solution; the doctors say the duct doesn't always stay closed after this treatment. But even if it stays closed for a short time, that may be enough to allow him to eat some and to let his lungs get a bit stronger, things that would make surgery less risky in the long run.

When we left tonight, he seemed his old self (if that's possible for a 12-day-old baby), sleeping with his hands thrown back and his purple goggles on (the jaundice light returned tonight), oblivious to the bustle around him. His oxygen needs again were low and his ventilator settings were lower after both were startlingly high just a few hours before. We take this one day at a time, and after a less-than-promising start, we ended this one guardedly optimistic about tomorrow.

Saturday, November 06, 2004

Today was a long, tough day. We got an early start hoping to avoid the traffic and insanity that surrounds a Hawkeye home football game. We almost succeeded. Navigating any part of the west side of Iowa City on game day is an arduous task; trying to get to University Hopsitals, which is across the street from Kinnick Stadium and the 70,000 drunken fans lurching about outside, can be an ordeal.

Once we ran that gauntlet and made it inside, we found Will still dealing with breathing problems. Because his lungs remain immature, the ventilator is being asked to do an increasing amount of work to help him breathe. While Mary and I are concerned, the doctors assure us that this is nothing they haven't seen in many other babies Will's size and age. We are awaiting the results of a few tests that will help them to determine how his next week will go, and I will report more here once we learn what that course will entail. It seems that many of the things that they would like to see improve -- his breathing, his eating, his weight -- are all tied together, and that finding the solution to one problem will start the process toward solving them all.

While today was tough, it could have been far tougher. The love, support and assistance of friends and family makes all of this easier. We share news about Will through this site because we spend as much time as possible with him at the hospital and simply don't have the time to communicate with everyone personally. We also don't have the time to personally thank everyone who has offered support and assistance along the way. It all has been staggeringly overwhelming. We want to thank everyone for every call, card, note, e-mail, flower, meal and chore. Thanks to our co-workers for picking up our slack and allowing us more time to be with Will. All of this help and support has enabled us to deal with this each day, and to spend as much time as possible with our son. We can't possibly thank you enough.

Friday, November 05, 2004

This is the first photo of Will with his eyes open. One of his nurses took it Friday afternoon. That's his Dad's hand he is gripping so casually. Please note that Will continues to have much better skin tone than his parents... must be that jaundice lamp. He did inherit Dad's blond hair, it seems, if his eyebrows are any indication. The camera flash makes his skin look much more shiny than it is. He has a good, healthy layer of skin now that has replaced the more gelatinous layer he wore into the world last week.
Will had a good visit with Grandma and Grandpa Kenyon today, and to celebrate he opened his eyes to take a look around. The folks in the NICU declared Thursday his "official" eye-opening day, and so from here on out he'll be able to pay a bit more attention to what's going on around him. As he gets more used to having them open, we'll see if we can sneak a camera in there to take a photo of this new development.

Thursday, November 04, 2004

We hit a real milestone today: Will opened his eyes! Barely. When we came into the NICU this morning, there were rumors about having seen him crack open an eye to take a peek at the world, but it wasn't until our visit this evening that we saw for ourselves. As we bent over the warmer bed to say hello, he snuck his first look at Mom and Dad. I refrained from capturing photographic evidence, figuring the last thing he needs as soon as he opens his eyes is some paparazzi sticking a camera in his face. As strong as he's getting, I feared he'd get all Sean Penn on me and knock the camera out of my hands.

Ah yes, those strong hands. Here, as promised is a photo from this morning of him grabbing Mom's finger and squeezing for all he's worth. He did this very briefly with me the night he was born, but has really developed some finger strength in the past eight days.

To add to that, he continues to bulk up. He was at 530 grams tonight, up from his previous high of 526. Challenges remain as he deals with his eating and breathing and other issues, but there is no denying that he has made significant progress in a short amount of time.
We had a good visit with Will this morning. He was breathing well and seemed to be having a good mid-morning nap. He was pretty cuddly with us, too. He was on his side and would grab onto a finger when offered. (photo to come, stay tuned) We kept in fairly constant contact with him throughout the visit today. Not sure if that helped him, but he was breathing good the entire time we were there.

Wednesday, November 03, 2004

Tonight's routine was just that for Will, but not for his Mom and Dad. Mary and I helped out with his "cares" tonight; she changed his diaper, and I held him while they weighed him. For Mary, it meant manipulating the smallest that Pampers has to offer, while I held him aloft so they could zero out the scale that doubles as his bed. They even put a fresh diaper on the bed when they zero it out so there is no cheating in the weight department. The good news from that was that he went from 475 grams to 512 between this morning and evening. He's creeping back up toward his birth weight, which is good.

Mary and I also applied a lotion to his skin, which is starting mature as the scaly parts fall away. The lotion, aquaphilic cream, seems to help his skin to stay moisturized, and he really seemed to enjoy it as we put it on him.

He got more good news when his head ultrasound came back free and clear. That means there was no bleeding, which can happen in premature babies (and others), and is called an intraventricular hemorrhage. This test is done after 7 days, and not again until around 42 days.

He still needs to work hard on his breathing. They gave him surfactant, something the body makes naturally, but that is not made in sufficient quantities by babies until they are as many as 34 weeks old gestationally. The substance helps to keep the air sacs in the lungs open. Will has received a few doses of this through his breathing tube, and it seems to help him to breathe more easily. Over time, he'll start making it himself and will have an easier time of it. It took a few hours after his noontime dose today, but by tonight he was breathing better and seemed to settle down for a well-earned night's rest.

Well, maybe we rushed it a bit on that milk thing. Seems Will has his own ideas about eating, so the doctors decided to ease up a bit on his feeding schedule. His digestive system is very underdeveloped at this point -- he wasn't really expecting to get his own meals for several more weeks -- so they want to take it easy.

I received a couple of questions about the caffeine injections: Why, if he's on a ventilator, does he need to remember to breathe? Well, even though the ventilator does much of the work for him, he still must contribute a bit to the process. The caffeine will help with that now, and will help him to better deal with breathing on his own as they back off the ventilator and eventually remove it. The condition is called apnea of prematurity, and it is fairly common in premature babies.
He did graduate from the jaundice light today... at least for now. It might come back, but for the time being, his numbers are good and he can go without the shades for a bit. His skin was looking better today, too, which makes for a couple of bright spots in a day where the news about his eating and breathing could have been better. Even so, the doctors assure us that his numbers and condition are well within what they expect for a baby at Will's age and size.

Tuesday, November 02, 2004

Will turns one week old tonight, and to celebrate, he'll have some mother's milk. The doctors said they are going to increase both the amount (to 2cc, or about 2/5 of a teaspoon) and the frequency (to every six hours from eight) of his feedings. He still gets almost all of his food from a tube that gives him a liquid with glucose, electrolytes and other good stuff, but as he is able to better handle milk, he eventually will rely on that entirely for his nutrition.

Right now he looks kind of scaly because his skin is drying out. Though it looks uncomfortable, it's a good sign, because it means his skin is maturing quickly. That's good, because the sensors on his body have caused sore spots due to his thin, very-sensitive skin and there are only so many places to put those on his tiny frame.

He has been given several different kinds of medicine during his short stay, but the doctors finally gave him something familiar. He was given caffeine today in the hope that it will stimulate his brain and remind him to breathe regularly. It was a very small dose, but then again, he's a small guy. I told him to get used to it, because his Dad often needs a jolt of caffeine to remember to breathe when faced with yet another business breakfast that starts before sun-up. His came through an IV drip rather than a cup of coffee, however. He just might have something there...

Monday, November 01, 2004

As I mentioned below, the sensors attached to Will help to track his vital signs. Another measure of his progress is his weight. Here is the scale readout we see each day when we come in to visit him. His weight is measured in grams. He was 522 at birth, bulked up to 526 on day 2, then lost weight for a couple of days. We reminded him that he didn't really need to diet, and he responded by gaining some of it back the past two days. He is now back above one pound at 480 grams.

OK, there has been a lot of demand for a photo of Will chilling out in his purple shades, so here it is. These big foam things are designed for a bigger baby (then again, what isn't?), but he wears them well. They protect his eyes (which are not yet open) from a special light they shine on babies in the NICU to prevent jaundice. He'll probably never forgive me for putting up yet another photo of him in his diaper (which showed today, for the first time, the evidence of some, um, digestive system progress), but his public must be satisfied. He often relaxes like this with both hands behind his head, but opted in this photo for the "one hand behind head, one hand exploring ear" pose.