Saturday, January 31, 2009

Blaise videos now on Picasa

This is just a quick post to say that I've moved all the videos of Blaise to a Picasa gallery at the following URL:

The "shared stuff" page was rotating clips out of the viewing lineup, so a couple of fan favorites were no long visible. The new gallery shouldn't have that problem and now people can easily add comments, share clips with others, etc. We'll update the link on this page soon so it just points there. In the meantime, enjoy the clips and we'll post some new ones soon.

Thursday, January 29, 2009

Four weeks old

Today was a pretty quiet day, although I worried a little bit when I arrived at the hospital to find three nurses around Blaise's bed. My mind went straight to the medical: Did her ostomy bag fall off (again)? Is she losing lots of fluid from her ostomy? Is there a problem with one of her lines? What could possibly require three nurses?

Answer: She's cute. Things were pretty quiet and they were showing a nursing student around. Blaise was awake when they got to her room and she charmed them into staying. For further evidence on this point, there are more photos up, this time with much better lighting.

I also took some video of her with her MIT bear mobile. The MIT mascot is actually a beaver, so I'm not sure why the mobile has bears on it, but now that she's in a real crib she can have it up. The reason I took the video, though, is that she actually tracks the bears with her eyes as they go past. Not bad oculomotor control for someone who technically shouldn't even have been born yet.

Wednesday, January 28, 2009

Omegaven & The view from 10 East

The first full day "on the floor" at 10 East went very well. Blaise had a good night, weight gain continues to be good, and she's even hanging in there at higher levels of enteral feeding (2ml/hr) and oral feeding (7ml every 4 hrs). We've both been pretty happy with the nurses we've met so far and the floor that Blaise is on is where all of the patients with short-bowel syndrome are treated. This means that her nurses are bound to be very familiar with the nature of Blaise's care, probably even more so than the nurses in the NICU.

We also had a visit today from Dr. Mark Puder, who is an extremely important person in the world of short-bowel syndrome. Currently, Dr. Puder is carrying out a randomized clinical trial of a product called Omegaven, which many parents credit with saving their child's life.

The deal with Omegaven is basically this: Blaise still gets almost all of her actual calories and nutrients through an IV. Feeding infants this way is called "Total Parenteral Nutrition" or TPN, for short. It's a way of assuring that a newborn gets all the right stuff delivered into the bloodstream, but there's a catch. If traditional lipids (fats) are being given via TPN they inevitably cause liver damage. Fatty deposits build up in the liver, the lipids also cause an inflammatory response, and liver tissue begins to fail. Ultimately, an infant who has been on long-term TPN will become severely jaundiced due to the excess of a substance called bilirubin, and suffer from advanced liver failure. Bilirubin is a compound associated with the breakdown of hemoglobin in the body and is responsible for the yellow color you see in bruises. A healthy liver can deal with bilirubin. An unhealthy one can't, and so bilirubin levels are monitored very closely in kids that have to stay on TPN. Even just a few years ago, the need to provide nutrients by IV coupled with the knowledge that doing so caused liver damage was a pure Catch-22. The prognosis then for a baby like Blaise would've depended solely on how long we could manage to balance TPN with liver failure while she waited for a double intestine/liver transplant. Needless to say, the overall outlook then was not very good.

So what's different about Omegaven? It's a lipid that can be provided to an infant on TPN in lieu of traditional fats that's made from fish oil rather than plant-based lipids. Most importantly, it appears to not only prevent liver damage from occuring, but even reverse existing damage to the organ. I can't emphasize enough how dramatic the results from Children's Hospital Boston are: While the full study hasn't been completed yet, there are many, many patients who have recovered from severe liver failure after being put on Omegaven. Given the striking success of this treatment, children with short-bowel (and I imagine other kids with TPN-related liver problems) are given Omegaven at Children's Hospital Boston due to conditions of "compassionate use." Basically, this means that once you know that a treatment works, it's unethical to withhold its use from a patient that needs it. The FDA essentially gives approval for individual kids who need it while full approval is pending, and kids like Blaise get the care that will save their lives.

Today, we were told by Dr. Puder that Blaise's bilirubin levels were nearing 2.0 (twice normal). This is their cut-off for administering Omegaven to children on TPN, and he just wanted us to know that he had his eye on her test results and was ready to get her on board as soon as she crossed that threshold. I should point out that 2.0 is actually fairly mild as the numbers with levels of 14.6, 25, and even 60 have all been treated with Omegaven and thrived. In most cases, those kids only got that sick because it was too difficult to get Omegaven administered. Being at Children's in Boston makes an immense difference in this regard. We're literally in the place where all the work is being done, so Blaise's care is not in any doubt. In this, we're incredibly lucky.

Reading back over what I've written already, I realize it must sound a little nuts. Omegaven sounds like some kind of "miracle drug" or "health tonic" that somehow fixes everything. It's rare in medical science (or any kind of science, for that matter) to come across something that unambiguous. Still, it's hard to argue with the number of children that have been helped. We're both keeping in mind that this is still a treatment, not a magic pill that's guaranteed to work. That said, we're confident that it has the potential to do a lot of good.

OK...enough medicine. There's more pictures in the gallery! We've taken several photos of her new room for everybody to see, and there's some new photos of Blaise with even fewer tubes and lines. She's definitely filling out a bit more these days, which has made the chubby cheeks even more adorable.

Tuesday, January 27, 2009

Movin' on up! To the East Side!

As if moving to the big crib wasn't enough, Blaise has now moved out of the NICU and onto one of the regular hospital floors. This is a very good sign that she's strong and no longer in need of the level of nursing care that they have in the NICU. We had known that she would move to the floor eventually, but we had no idea until this afternoon how soon it would happen. We are a little nervous about this transition because she won't have a nurse within 10 feet every second of the day and we would definitely have liked more notice on the move itself, but we also know that they wouldn't move her if they didn't believe that she could handle it. When we left tonight, we were pretty comfortable with the situation and I'm sure we'll get more and more used to it over the next few days.

Her new room is a double and I think she might be getting a roomie soon. The semi-private nature of the room means that it's much quieter than the NICU (fewer alarms!) and the nursing ratio is almost as good. Other perks of the move include a window, a place for one of us to sleep in her room if we want to and more freedom to get comfortable without feeling like we might be in the way. The floor also has some strollers and her IV pumps are now on a movable pole, so Blaise might get to see more of the world than the four feet around her crib. There's a play room at the end of the hall with mats for tummy time and loads of toys and books. The final, unanticipated benefit is that she has moved to the top floor of the east wing of the hospital, so singing the theme song from The Jeffersons is appropriate. Photos tomorrow!

Monday, January 26, 2009

New digs

Blaise has been holding her own temperature very well lately and last week they started keeping the lid of her isolette off all the time. This morning, however, we came in to find that she had been promoted to a proper crib. I guess she told them that isolettes were for wimpy little preemies and she was a big, strong kid.

The crib is pretty big relative to her, but they've built her a little nest in it. Here's a view of the whole thing. (See the photo site for more pictures from today.)

As if we needed more evidence that she's approaching term age, she had a nice big fit of inconsolable crying after her noon "bottle." I think she might have been a little overwhelmed by some of the activity in her room or looking for more milk, but this was the first sustained crying bout I'd seen her have. Preemies don't usually cry for long. If they're overwhelmed, they just fall asleep or shut down, but once they get close to their due dates, they start crying more like full-term newborns. She would cry for a while and I'd get her 95% settled down and then she'd remember that she was mad and go back to crying. What a typical baby thing to do!

Sunday, January 25, 2009

Food of the future

I'm not much of a science fiction fan, but in a lot of sci-fi that I've encountered, one of the marks of "The Future" is some big change to the way we eat. Maybe we will take a pill in the morning that contains all of our day's nutritional needs or we'll be served some kind of uniform, generic food rather than meat, starch and vegetables. This idea has been around for a long time in sci fi but, aside from the existence of some really over-processed stuff (e.g., Go-gurt), food and eating haven't changed all that much.

Blaise, however, is living in a form of that future. She's on total parentral nutrition (TPN), meaning that she receives all of her calories and nutrients through an IV. She gets a little bit of breastmilk continuously pumped directly into her stomach as well, so her stomach is never empty. Technically, she doesn't need to eat. She's living that sci-fi dream. Still, she slurps down that teaspoon of milk every four hours and then goes looking for more. Which, by the way, is kind of how I behave with miniature Snickers bars. Sorry, sci-fi visionaries, people really like eating. (Duh.)

She had another pretty good day today. They increased the amount that is being continuously pumped into her stomach. We'll see if that holds or if they decide to back off again. She may have hit a bit of a ceiling on that front, but that doesn't mean that ceiling is a permanent one. If they back off, we'll try again in a few days. I'll try to fit in another photo shoot tomorrow, maybe this time in an outfit that's not pink.

Saturday, January 24, 2009

New Videos: Somehow even cuter than before

I'm just now uploading a bunch of new videos to the "Shared Stuff" page linked from here. More outfits, more funny faces, and ~100g more Blaise!

As always, may take them a bit to go live. The "Wireless Hotspot" here in the hospital cafeteria is decidedly lukewarm today.

Friday, January 23, 2009

The Tale of the Tape

This will be a pretty short entry, but Blaise hit two milestones that we're very happy about and we wanted to tell everybody about them.

First of all, as of today she's 36 gestational weeks old. She continues to expand her repertoire of funny faces, and continues to get better at self-soothing, eye contact, and even some visual tracking (I think...haven't really tested her the right way yet).

Second, Blaise now weighs over 4 pounds! Still sounds small compared to our friends' babies, but she's up over her birth weight now, which is great. Newborns always lose some weight just after they're born and Blaise lost a good bit extra due to her surgery. She's been steadily catching back up though, and we're hoping she can keep that going. One of her nurses pointed out that usually one doesn't talk about a lady's weight in such detail, to which I could only reply "That's no lady, that's my daughter." Still too early to tell if Blaise appreciated the joke.

In other developments, her bed is now adorned with some nice high-contrast pictures for her to look at and her head is also now adorned with a pink bow. We're still not sure what we think about the bow, but it was nice of whichever nurse put it there to think of her. It's unclear what it's stuck to her head with (ostomy paste? duoderm?) but it's stayed put for a full day now. Time will tell.

Wednesday, January 21, 2009

Great Discoveries

In a week where people are tossing the word "historic" around a lot, I've been thinking about the great discoveries of history: the New World, penicillin, pulsars. And in the same spirit of exploration that led to these historic discoveries, Blaise has discovered her own thumb!

This is a great discovery in my book because she tends to spit out her pacifier and then be consumed by The Rage. Of course, I'll be trying to break her of this in a few years, but we'll cross that bridge when we come to it.

In other news, Blaise is gaining weight beautifully, at a rate of nearly an ounce a day, and the nutritionists seem quite pleased with her progress on that front. She's also absorbing at least some of the milk that she's getting from her enteral and oral feedings, which is a good sign in terms of the functionality of her remaining bowel. We'll try to get some more photos up soon so you can see just how much she's growing. She was destined for chubby cheeks (just look at her parents) and they're starting to appear.

Tuesday, January 20, 2009

Blaise got mail!

Today Blaise received her first piece of mail, which was even stamped with the words "Official Business" to make it even more impressive. While we haven't opened it yet, it's almost certainly her Social Security card. In the grand scheme of things, this is really just one of those small-but-important formalities that marks Blaise's entry into the world of bureaucracy, but I can't tell you how excited I am that the card arrived.

When Blaise was born, there was a lot of uncertainty about what might happen next and we were both pretty scared. For whatever reason, one thing I fixated on in that first day or two was all the paperwork that had her name on it. Neither one of us got to spend much time with her before she had to go to the OR and the speed with which everything happened left us in a recovery room by ourselves almost as soon as we'd been admitted. It was about the strangest feeling ever...we'd gone through a whirlwind of doctors and nurses, Erin had had surgery, we'd both met our daughter, and somehow we ended up just sitting in this room like nothing had happened. It really got to me, and so I memorized her medical record number, made about a dozen photocopies of the birth statement we got from Brigham & Women's hospital, and when they handed us the Social Security form I filled it out at light speed. A Social Security card means you're here and you're in the system. I wanted Blaise to have a record on file with someone who wasn't a doctor and who'd list her with her own name instead of "Baby Girl."

Anyhow, today we had another good day of resting and relaxing and tomorrow we'll show her her first letter and open it together. I'm not as desperate for an official marker of her existence as I was then, but I'm still excited to see the letter. In a similar vein (and since the inauguration was today), Erin's also been planning to file for our official letter from President Obama, congratulating Blaise on her arrival. Turns out all you need to do is write to the White House Greeting Office with the details of your child's birth, and they'll send along what's supposed to be a very nice letter to your baby from the President. Pretty cool, and we're both excited that she'll get her letter from Barack Obama. A friend of ours joked today that Blaise may have been born early out of sheer excitement for the inauguration ceremony (which she unfortunately had to miss, being in the NICU and all), so hopefully she'll think it's a neat thing to have when she's older.

Monday, January 19, 2009

Blaise Ursula

Today was a calm day for Blaise. No real changes to any of her feeding amounts or schedules, no new medications, and a lot of nap-time while being held by Mom and Dad. Since there's not a lot to report on the medical/surgical front, I thought I'd take a second to write about her name.

I actually overheard her day nurse briefing the night crew on Blaise's condition, and at the first mention of her name, the new nurse interrupted right away:


"Blaise. Blaise Conwell."

"How do you spell that?"


"Oh. Hunh."

Most of the reactions we've heard have been really positive (though those are only the ones that we've heard). Our friends in France seemed very pleased that we chose a scholarly French name, and the priest that baptized Blaise was also all excited to tell me about St. Blaise and St. Ursula. The question everybody has asked us is where the name(s) come from, and we honestly feel a little bad that we don't have a great story. Still, there is a lot of neat stuff about her name we can tell you, some of which helped us decide that it was a great name for our kid.

OK, the first thing is going to sound a little dumb, but I'm just going to fess up: I thought it would be cool for her to have doubled B's for initials. I've got 'em, my Dad's got 'em, and they've worked out great. When I was a little kid I thought it was really cool that I had an alliterative name, and since I didn't have any desire to actually pass my own first name on in any form this seemed like a neat way to keep an ad hoc tradition going. Besides, lots of great superhero names have doubled initials: Peter Parker, Bruce Banner, Reed catch my drift.

So why Blaise? Why not any other girl's name that starts with B? Honestly, we just saw it on a list and liked it. It sounded strong and interesting, and both of us liked the idea that it was a unique name by virtue of being old rather than new. (I actually told some of my friends that the girl's name we picked was old-fashioned, and when they started guessing things like "Beatrice," I couldn't resist telling them that I meant "like Middle-Ages-old.")

The name has a few neat things associated with it that we knew we liked. St. Blaise has one of the more interesting rituals in the Catholic church associated with him, in which a blessing to ward off throat disease (one of the things Blaise is patron of) is accompanied by crossing lit candles at the neck of the petitioner. He's also the patron saint of infants, animals, and (according to some sources) scientists...three things that more or less sum up our household. Besides St. Blaise, Blaise Pascal was an important mathematician and Christian scholar famed for his attempts to reconcile science and religion and fleshing out a great deal of probability theory. If you're curious, looking up "Pascal's triangle" and "Pascal's wager" will give you a good sense of both aspects of his life and how he tried to reconcile them. Finally, it turns out that "Blaise" is actually derived from the same root as "Balas." In a sense, this means that we've effectively named our daughter something approximating "Shrimp Scampi" but I figure it's alright.

So what about "Ursula?" This one is unfortunately just us being a little cutesy. We fell into the habit early on of referring to the baby as "The Cub," and so a middle name that means "Little She-Bear" seemed appropriate. I know, I know...we're reverse-anthropomorphizing bears Disney-style. But you know what? Bears are awesome. They're top of the food-chain in most ecosystems they inhabit, are better swimmers and tree-climbers than most animals who develop only one such skill, and can walk bipedally whenever they feel like it. Seriously...beat that. We also just thought it was a pretty name.

So that's pretty much it. Like I said, not so much of a great story or anything, but we feel like we've given her a name that's got a lot to recommend it. It's a name with history and strength, and seems to suit her very well. I think some of our family and friends have been a bit surprised that we did pick something unconventional, but I also think that when you meet her it doesn't take long to see that she really is "Blaise."

Sunday, January 18, 2009

Because indoctrination can never start too soon

Two big events are happening this weekend. The first is the MIT Mystery Hunt, which Ben and I have been doing for something like 10 years. It's an annual puzzle event (think crossword, not jigsaw) that gathers over a thousand of the country's best puzzle solvers on the MIT campus for a weekend-long extravaganza of fun, frustration and sleep deprivation. The second is a Steelers play-off game. (I hear we're also inaugurating a new president or something.)

Even though we postponed our honeymoon to do Mystery Hunt, we couldn't delay parenthood for a few weeks, so we're not very involved with it this year. Still, we've explained Hunt to Blaise and she seems excited about helping next year, when she's healthier and knows some words.

As for the Steelers game, Ben's parents are visiting this weekend and brought Blaise a Terrible Towel. She has a strong grasping reflex and can wave her hands around, which is about the level of skill required for using a Terrible Towel. Not to be outdone, Blaise's Uncle Jim, who is also here this weekend, brought her a little Royals hat. Having been born less than a mile from Fenway, Blaise's first allegiance is to the Red Sox, but the Royals are a nice second team to support. We're planning to keep her an AL baby at least, so we've explained several times why the DH is a good idea. Photos with her visitors and their sports-related gifts will be up soon.

And now for the medical update: Blaise is gaining weight from her IV nutrition at a nice pace. She was born weighing 3 lbs 14 oz (1760 grams), but lost a lot of weight that first weeks. She was down to about 1500 grams (3 lbs 5 oz), but now she's up to 1665 grams (3 lbs 11 oz). It's great to see her gaining weight. She's also doing very well with the minimal oral feedings. In fact, she LOVES the oral feedings. They're also continuing to build up the amount she gets through the tube in her stomach. We'll hit a ceiling on that at some point, but the important part of that exercise is to keep her small intestine active and healthy while she grows on the IV nutrients.

Friday, January 16, 2009

A drop of milk

This morning Blaise had her first taste of milk. Over the past few days, the amount of milk she receives through her feeding tube has been gradually ramped up (she's at 1.5ml/hr right now, up from 0.5ml at the first attempt) and so far she's dealt with those rates well. Given that, and also given that we need to make sure she doesn't unlearn how to feed orally, she was given just 3cc of milk today through a bottle nipple.

As with everything else that has been introduced, we were warned by everybody that this might not go well. Preemies often have a hard time coordinating sucking, swallowing, and breathing while trying to feed, so we had her nurse standing by to check her color, make sure she wasn't choking, and help us deal if she needed to spit up. As it turns out, she downed the whole amount like a pro. Erin held her for a while trying to get a burp out of her since she also probably swallowed a good bit of air, but mostly she just kind of sat there looking a little bit puzzled.

We are talking a VERY small amount of milk here, but we're excited that she was able to do this this morning. It's definitely good that she worked out how to eat this way, and giving her oral stimulation like this is vital to preserving her instincts for how to feed normally. Besides that, it just felt a lot more normal. Erin's been working so hard to keep up a good supply of milk for Blaise and it meant a lot to have her be able to use it so directly.

There's certainly bumps in the road coming. We know that at some point they'll find an amount of milk that she can't tolerate by enteral feeding. In fact, part of the point of that exercise is to find that 'ceiling' so that the doctors know the maximum amount they can give her to keep her small bowel healthy. I have to admit that I find that prospect pretty work out where that level is, they have to push my daughter to her limit. She's a tough girl, but I hate the idea of stressing her out even though I understand that it's necessary.

Still, even though there remains a lot of room for backing off just as much as we move forward, being able to give her just a taste of milk was great. Fingers remained crossed all around, and we'll keep posting to let people know how she progresses.

Wednesday, January 14, 2009

I should know better....

First, I would like to report that Blaise has learned to play me. She knows when I really need to leave the NICU to get food or get home and she chooses those times to be the most alert and engaging and I can't drag myself away. Alternatively, that's when she starts crying. All of the nurses tell me to go ahead and they'll take care of it, but I can't walk away from my crying baby. She knows it, too.

Her tendency to seemingly respond to things people say to and around her is almost spooky. I know she doesn't understand a word we're saying. (I mean, really, I, of all mothers, know that.) But just today, her nurse asked if she was ready for a line-change and she nodded her head. Then, not five minutes later, the same nurse asked me if I thought Blaise looked more like me or like Ben. I said she had features of both of us, but that I thought she resembled Ben's family more. The little one chose exactly that moment to start to cry. I don't know why. Her dad's family are fine-looking people.

In response to requests from her fans, her photo site has been updated. I don't know where they found the pink letters outfit for her, but she was so cute in it, I almost forgave them the pinkness of it all.

And, finally, a medical update. The enteral feedings that they started and then stopped a couple of days ago were restarted yesterday morning, with a bit more success. They've even upped her intake to a whole milliliter an hour. Again, we shouldn't read too much into this, but it does mean that they will continue these tiny feedings for the time being. This is critical to keeping what's left of her small bowel functional and healthy.

Tuesday, January 13, 2009

New Videos!

I've just uploaded about 5 or 6 new videos to Google Video...I'll be adding them to my 'shared stuff' page (which is the link to the left) but it may take them a little bit to go live. My apologies in advance for some of them being a bit dark...the NICU light level remains variable and hard to control. These are pretty short clips, but hopefully they'll give you a sense of how much she's changed recently.

A steady eye and a rubber face

Besides Blaise's recovery from surgery, we've also been able to notice several very fun changes in her overall abilities as she continues to grow and develop. In particular, over the past day or two we've both found that she seems much more able to hold her gaze steady. Earlier, her eyes had a tendency to "float" a good bit, which is very typical for a premature baby. Now though, Blaise will look you square in the eye and just look at you for a bit. Granted, her vision is very blurry at this point. It's kind of funny how often the nurses remind me of this given that I'm a vision scientist, but I will also admit that it's hard not to get very excited when she looks right at you. Even if I'm just a blurred-out talking blob, I'm still glad she likes staring at me. 

The second thing that many of her visitors and caretakers have remarked upon is that she seems to be developing a very expressive face. Blaise has a wide range of very funny facial expressions, including some impressive eyebrow tricks, a great little half-smile, and a full-face open-mouth grin that she wields very effectively when she wants extra attention. All in all, she's quite the little flirt and we're having great fun watching all these capabilities "come online." 

Finally, to say a little more about the follow-up to yesterday's attempt to feed, it turns out that they're planning to try giving her just 4 hours of breast milk today. This is very much a game of waiting and tweaking the parameters of her care, so you may be hearing a lot about this for a while to come. Several people have invoked the "marathon, not a sprint" analogy to describe what she's doing right now, but I think it's even more accurate to say that it's like marathon training. At this point, a lot of what we're doing is laying the groundwork for things we'd like to have happen months from now. It can leave you feeling a bit like you're not making progress, but I get the impression that the real way to move forward here is to just keep building up steadily. 

Last night, during her check-up in the NICU, we both noticed that Blaise stayed awake and alert, but hardly fussed at all. She just kind of sat tight and held Erin's hand the whole time. For a 35-week preemie, it seems a little bit like she's already working out how to be patient, too. Dad's working on that too.

Monday, January 12, 2009

The long road begins

Today, the doctors started enteral feeding with Blaise. This means that they began slowly giving her small amounts of breastmilk directly through the g-tube in her stomach. She was receiving 1/2 a milliliter an hour for about 6 hours today. They do this partly to determine how much function her remaining intestine has and also to prevent any further loss of function (use it or lose it, basically). This is a fairly major challenge for her and one that we didn't think they were going to attempt for another week or two. It was the first time we had tested her GI tract at all.

The results were neither great nor bad. After 6 hours, they stopped the feeding because she was losing as much fluid through her ostomy as they had put in, indicating that she wasn't absorbing much. On the other hand, she could have lost much more fluid, or it could have just sat in her stomach, which would have suggested other problems. None of the medical staff were surprised or upset by these results. Her nurses just seemed a little bummed, I'm sure because they really wanted to see her beat the odds. So did we, of course, but we also knew not to expect a miracle. The nurses and doctors all warned us many times going into this that the enteral feeding process with short bowel kids is a long and slow one. We'll try again in a little bit after we give her a chance to grow a little more. Importantly, Blaise was never uncomfortable or in any kind of distress during the feeding. She was really quite peaceful and rather charming to her visitors from Brown this afternoon.

Speaking of visitors, today was our first day since Blaise was born without any of her grandparents here. I know I had kind of mixed feelings about this because I wanted Ben and I to be able to spend time with Blaise without worrying about anyone else. (Note to Mom, Dad, Janet and Barry: I know you're going to say we shouldn't worry about entertaining you, but we do. We can't help it.) On the other hand, the moral support was nice to have, as was the help with the day-to-day things, since we're finding it very easy to neglect the laundry in favor of hanging out in the NICU. But never fear! Barry and Janet will be visiting again this weekend, as will Blaise's Uncle Jim, who hasn't had a chance to meet her yet. We know she's looking forward to seeing all of them.

Sunday, January 11, 2009

The little things

One of the biggest issues that premature infants have is lung immaturity. This is not a problem Blaise has. She was born crying. But we didn't hear her cry for three days after that because she was on a ventilator after her surgery. Now, (bad mom alert) I love to hear her cry. It reminds me that, in a lot of ways, she's just a newborn baby and prone to the random fits of rage that newborns have.

I've also learned to change her diaper. I thought I knew a thing or two about diapers, but I didn't know anything about changing a diaper on a baby with an ostomy. I know most new moms would gladly have an army of nurses around to change their babies' diapers, but I get a charge out of being able to do something for her. So my perspective is a little skewed: crying and diaper changes make my day.

We're trying to make sure we do at least some of the things we would do if we had her at home. Ben sings to her a lot; I don't, for reasons that are obvious if you have ever heard me sing. We also read lots of stories to her, including favorites of ours from when we were little, like Paddington and Where the Wild Things Are. Blaise also gets lots of cuddle time with both of us. We're nowhere near normal, but we're trying not to forget what normal looks like.

Ben & Erin head for Cambridge

We left home on December 31st thinking we were heading to the hospital for a few hours and now, almost two weeks later, we're heading back. It's difficult to go home without taking Blaise with us. We're not far away (and we'll be here to visit all the time) but it still feels a bit like we're leaving her behind. We did get her bed a few more decorations though, including a wooden "B" painted with stripes just like the one on her bedroom door at home. We've been reading lots of Paddington stories too, so there will soon be a small bear from Darkest Peru joining her growing army of stuffed animals. Finally, the Steelers game starts at 4:15 today and I'm hoping Blaise can give me just a little bit of Terrible Towel-waving. There will definitely be video of that if it happens.

In other news, we had the chance to speak to one of the GI specialists who works with short-bowel syndrome at Children's. He gave us a lot of good information and also told us that they may try and begin some very minimal breast milk feeding on Monday. This is a LOT sooner than we thought, and so we're both excited and a little nervous. There's a very good chance it may not go very well at first, so we've just got our fingers crossed for Blaise. We'll be sure to update here when we know some more.

Finally, Blaise has 3 new friends! Sirisa Elise Cox, Auden Tai Tierney, and Erin Chaize have all been born to friends of ours in the past week. Sirisa and Auden just arrived yesterday (or close to it, we're waiting for more details) and Erin was born about a week ago. We may link to their blogs and photo sites as they come online...maybe a baby web-ring?

Friday, January 9, 2009

What a week!

Blaise was one week old yesterday and it's been the longest but also the most amazing week of all of our lives. It's been incredible to watch her go from desperately sick to strong and beautiful in so short a time. We all still have a lot of work to go and we know there will be some bad days mixed in with the good, but for now, we're happy to watch her grow and heal. She has hit her "goal calories" on her IV nutrition, so she should begin gaining weight and getting stronger over the next few days and weeks.

In an interesting coincidence, there was a story in the Boston Globe this morning about a treatment being pioneered at Children's Hospital Boston that helps kids with short bowel syndrome avoid the liver damage that tends to come with long-term IV nutrition. This is a treatment we've talked with Blaise's doctors about and she may become a good candidate for it at some point in the future, although it's too soon to start her on it now. It's also very inspiring to see pictures of the little girl in the article jumping around like a normal toddler in spite of the IV she has to wear all day. You can read the article here.

I would also like to direct your attention to the links to the left of the posts, which now include videos and pictures of Blaise. We don't take many photos because the light from the flash is kind of out of place in the NICU, but we'll try to keep updating those. She gets cuter all the time!
As of yesterday, Erin & I have been married for 4 years. We spent last night with Kathie and our friends Kate & Andrew at their apartment in Arlington, where they'd cooked dinner for us. It was a wonderfully low-key anniversary dinner and I think both of us felt a lot better for sitting down together to eat some real food for the first time in a few days. We'd joked weeks ago that this was our last anniversary without a baby-sitter...turns out we were wrong, of course, but as Erin said recently "We left Plan A in the dust a while ago!" Blaise at least has the best babysitters in the world to look out for her while we go unwind just a little.

We've written a lot about Blaise here already, but I want to tell all of you how amazing my wife is too. When we met 9 years ago, there's no way we could have guessed that we'd be here someday, and we had no way to know what being together through such a difficult and frightening experience would be like. Now that we're here, I'm amazed at my good fortune. My wife is the strongest and most loving person I know. The past four years have been filled with love and laughter, both of which have served us well during the past week. I know she'll be embarassed if I write more, so I'll just stop here. Thanks , Erin.

Wednesday, January 7, 2009

Meeting with the Doctors

We had a meeting with Blaise's doctors today to discuss her status and the path we'll be taking from here. We weren't really told anything we didn't already know, but it's still hard to hear.

The state of her intestines is not good. She has very little in the way of healthy small intestine and we're waiting to find out more about her large intestine. The problem here is that the small intestine is responsible for absorption of most nutrients and fluids, so getting adequate nutrients without much small intestine is very difficult. The next two big steps for us involve finding out how well her remaining small intestine absorbs nutrients and determining how much of her large intestine is functional. For the time being, she's receiving all of her nutrition through IV. The timescale for this is many weeks because our first priority is making sure she's as big and strong as she can be before adding any more stress. We also need to be sure that she's recovered well from her surgery. We're taking our cues from her.

In less medical news, we're pleased to report that although she's the youngest baby in her part of the NICU, she doesn't let the others push her around. She's got quite a voice and can out-yell the other babies. When she's quiet and alert, she has a hilarious set of facial expressions, including this funny little smirk that makes us suspect that we're not in on the joke. She loves to be swaddled, held and sung to and we read to her all the time. We've also tried explaining such important life-lessons as the difference between a standard crossword puzzle and a cryptic, how many Super Bowls the Steelers have won and why she can go to any college she wants as long as its not CalTech.

Tuesday, January 6, 2009

A Word about the NICU

Since January 1st, Erin & I have spent a great deal of time in the NICU at Children’s Hospital Boston. It’s also Blaise’s home for now, and so I thought I should try and say a bit about what it’s like. Of the many things that we’re learning to adjust to, the nature of parenting in the NICU will likely be an ongoing lesson. We’re still in the early stages of that lesson right now, and so I wanted to try and capture a bit about what the room is like before we’ve learned so much it becomes the new routine.

First of all, the NICU is essentially a city unto itself within the boundaries of Children’s. It has about 60 beds and offers care to babies with an incredibly wide range of difficulties. Some of the babies there simply arrived early and need to spend some time getting bigger and stronger. Others have had surgery or an acute medical problem during the first year of life and need to recover. Still others were born with systemic problems like cystic fibrosis or Down’s syndrome that will require lifelong care. In the grand scheme of the NICU, Blaise occupies a fairly unique niche: all three of those apply to her.

Her bed (or “isolette”) is at the end of a row just to the left of the entrance. It’s basically a plexiglass box that sits on top of a stand that allows for adjustment up and down. Several mattresses sit inside the box, with pretty sheets, pillows, and blankets inside for her. The box itself has two portholes on the longest sides so you can talk to her or reach in to touch her, and you can also raise the entire lid to make all this easier. The isolette can serve as an incubator, too. Blaise has shown us that she can maintain her body temperature without help, so she’s not being kept at the “toasty” setting anymore. At first though, when you’d reach in to hold her hand or touch her head, it felt a bit like a small oven.

Next to and around the isolette are the many monitors, pumps, and amplifiers that allow her doctors and nurses to listen to what her body is doing and provide it with what it needs. As a parent in the NICU, you immediately develop a very uneasy relationship with all of this equipment. IV lines are keeping your baby healthy, but look like they hurt her and thus anger and annoy you. The main monitor displays three traces describing her pulse, her respiration rate, and the amount of oxygen in her blood, providing the blessing and the curse of too much information. Then, of course, there are the many alarms. At any given moment in the NICU, there is bound to be at least one or two monitor alarms going off. They make noise for all kinds of reasons, most of which are benign. A baby’s heart lead slides off her chest a bit (or in Blaise’s case, she pulls it off) and loses good contact with the skin, for example. The monitor only knows that the voltage it reads off at the skin dropped to almost nothing, so it beeps. For a day or two, Blaise’s blood-oxygen saturation was very high, probably because she was being given supplemental oxygen on top of fairly healthy lungs. The monitor only knows that the amount of light reflected and scattering off of the blood circulating through her fingers is “at ceiling” and not budging. This is a sign that a sensor may be broken or shorted, so it beeps. You learn these things, but Erin & I have yet to really convince ourselves that beeping is okay. I doubt any of the parents there really ever do. The nurses can silence any of the alarms from multiple locations in the room, and they do it with an efficiency that suggests to me that it must be one of the first things they are trained to do in the NICU.

Speaking of the nurses, we’ve found them to be uniformly wonderful. Actually, “uniformly” may be exactly the wrong word to use since they each have a very particular style. Without naming names, Blaise’s nurses range from being a bit on the dramatic side, to being remarkably calm and soothing (both to her and to us), with all kinds of variation in how gossip-y, funny, and quick they are about things (some of them are VERY fast). What does not vary is their dedication to helping us be parents in the NICU. If we want to hold Blaise, it happens right away, despite the fact that it’s currently a bit of a production to move her and all her lines and leads out of the bed and into Mom or Dad’s arms. Any questions we have get answered immediately, or they page the person who can help. Soon, they’ll help us learn how to do some of the many things Blaise needs, including changing her diaper and helping with her line changes and baths.

Besides all that, there are the little things. You cover your hands in Purell before you go in the doors of the NICU and habitually re-apply it while you’re there. You read storybooks through phone calls and monitor alarms. The local light level changes seemingly at random, a feature of the room I’ve yet to understand. There always seem to be either too many chairs or none at all. Still, despite how strange all of this must sound, there is a lot of room to make the NICU feel a bit like a home. Blaise has a growing library of books under her bed, and a polar bear, a bunny, and a doll to keep her company in the isolette. (The bear is named “Atka” and the doll is named “Olivia Hope.” The bunny has no name as yet, but I suspect it may go by Marvin.) We’re planning to bring a wooden letter B for the lid of her box, and a Terrible Towel is en route as well. Blaise has been wearing a hat made for her by our friend Jenny, and will probably have a Red Sox blanket in there too as soon as we get home to get it. It’s not the bed we were hoping to have ready for her, but we’re making sure it’s hers (and ours).

I may try and write a bit more soon, especially as we get more used to how all of this works. Maybe Erin will add her perspective on the place too. It’s not nearly as frightening as I expected, and Blaise is clearly getting excellent care there. It is a pretty novel environment though, and we’re still learning more about it every day we’re there.

Let the photos begin

I'll set up a proper Picasa gallery soon, but here are a few pictures to get us started.

One of those days that's a long week

Many people have a lot of expectations about how their babies will be born and, once you're expecting a baby, you start thinking about your preferences for birth. Any doctor, nurse or midwife will tell you, though, that those are just preferences and that you can't expect everything to go exactly according to plan. Nothing hammers that lesson home quite like having almost nothing go according to plan.

Blaise was due February 20 and, until December 17, we had no real reason to expect that ours would be anything other than a typical birth at our local community hospital. I had been totally comfortable with no signs of any problem and Blaise was an active, healthy-seeming fetus. Then our December 17 ultrasound showed that she had some kind of intestinal blockage. We had been told that this put us at risk for premature labor and also that we would have to deliver at a major hospital with a high-risk specialist. We knew she would need surgery shortly after she was born. This was very frightening news to us, but we began the process of adjusting to the new plan.

Starting around December 28, I was feeling more and more uncomfortable and by the 31st, it was bad enough that we went to my doctor to get things checked out. Although I was not quite 33 weeks pregnant, I was measuring at 39 weeks, suggesting that something was wrong. She sent us to Brigham and Women's so we could see a high-risk specialist right away. The specialist ordered another ultrasound and found that the problem with Blaise's bowel was much worse than it had been only 2 weeks before. We were admitted to the hospital for steroid treatments (to help her lungs develop) and for 48 hour observation, but they didn't think it was likely that we would have to induce labor or do a C-section to intervene.

I woke up early on the morning of January 1 feeling more uncomfortable and having small contractions. Then, at about 8:15, my water broke on its own and I was transferred to the Labor and Delivery ward. Based on the strength of the contractions and other signs, we thought we were settling in for a long, normal labor. At about 10, I told Ben to go get some breakfast. Less than 5 minutes later, a startling number of doctors appeared in my room and told me that the baby was in distress and they were taking me for an emergency C-section. As they wheeled me out of the room, I threw my cell phone at the nurse and told her to call Ben and tell him to come back. He made it back in time to be with me when Blaise was born at 10:47 AM. She was yelling her head off, which might be the best sound I have ever heard.

Ben got to hold her very briefly before she was taken to the NICU at the Brigham, where the pediatric surgeon took one look at her belly and decided to take her for surgery immediately. They brought me up to hold her for a few minutes and then Ben went with her to Children's for the surgery. During surgery, they discovered that the intestinal blockage had caused what is called a volvulus, meaning that the intestine twisted on itself and cut off its own blood supply, causing the tissue to die. As a result, Blaise has very little small intestine and a condition known as short bowel syndrome. For now, she will have to receive all of her nutrition through an IV. The surgery was also very hard on her and she had to be resuscitated during the operation. When we were able to see her again, she was on a ventilator and receiving a number of medications. Frankly, things were pretty bleak.

Ben's parents arrived that night and mine came in to town the next morning. By the next morning, she was looking stronger and within a matter of days, she was breathing on her own and off almost all of the medications. As of today, they are no longer using the incubator to help regulate her temperature, as she seems to be doing that on her own. Aside from the problem with her intestines, she is very healthy and has been described by her nurses as "a spitfire" who "has definite opinions." She's proven to us that she's one tough kid and we're very, very proud of her. The problems with her intestines are quite serious and will require a lot of maintenance and treatment. She may never be completely off IV nutrients, but I think all three of us are determined to work with what she has.

I'll post links to photos and videos soon. I just wanted to get the (abbreviated) story up so that everyone has some sense of what's going on. I promise more fun stuff mixed in with the serious stuff. There's a lot of serious stuff, but she's also darn cute and makes us laugh a lot.

Saturday, January 3, 2009

She's here!

Well, Blaise was scheduled to arrive in mid-to-late February, but she decided to arrive a little early. She was born by Caesarean section at Brigham and Women's Hospital on January 1, 2009, at 10:47 AM. We have a very long story to tell about her arrival and will be regularly updating about her status, but for now, here's a video of our beautiful baby girl.