Monday, September 28, 2009

Swings, games and other adventures

We've all been doing well. On the medical front, we're still seeing some blood, but not as much. (I hope I didn't jinx it by saying that.) We're also still on hold for new foods, so it's just been formula and rice. I know Blaise doesn't care, but it's driving me crazy. On the more fun front, Blaise continues to roll all over the place and she's started with longer, more sustained babbling. Her current consonant inventory is /b/, /d/ and /w/, with the occasional accidental nasal. Mostly she produces sustained open vowels, but with lovely prosody.
Last week, we took a trip to the playground with Blaise's buddy Auden. Auden tried, once again, to eat rocks. Blaise showed a bit more restraint. The big hit, of course, was the swing.

We also went to a games party this weekend, where Blaise got to meet still more people who have been reading about her off and on. One of our Southern Hemisphere readers will be glad to know that Blaise has learned to play Ticket to Ride and is ready to take on all challengers. We figure it's good to start early on the geeky road to German board games. I hear they make Settlers of Catan for children. In further geek indoctrination, Blaise went to work with Dad this afternoon, where she read about the brain. Note to Aunt Libby: It's going to take more than one trip to Bloomies to undo the years of geek influence. Once a nerdling, always a nerdling.

Expect a bit of a break in posting because we're preparing for our next adventure: a trip to Pittsburgh to visit Ben's family this weekend. I'll be sure to give a good update when we get back. For now, new pictures will be up on the photo site momentarily. Enjoy!

Wednesday, September 23, 2009

Other kids

We have mild to moderate (totally rational!) paranoia about Blaise being around other kids. Kids are disease vectors: they stick everything in their mouths, including their hands and sometimes other people's hands. Blaise does it, too. But we really don't want her getting sick because short guts have a harder time fighting infections and what would be a regular bug in a typical kid could be a very serious illness in Blaise.

Still, we can't keep her in a bubble and it's really important for kids to see other kids. So this weekend we headed to a birthday party for her buddy Auden's mom where Blaise was one of four babies. She and Auden tried really hard to eat rocks and leaves out of the yard. Great fun was had by all, in spite of some killjoy mom types vetoing the rock-based diet. This evening we took her to a group for families whose kids have medical needs. I don't miss much about being in the hospital, but it is nice to not be the only person in the room whose kid has a g-tube. There was a point a while ago where I joked that half the kids under 3 that I knew had tubes. It's not that I want other kids to need tubes, but it can be comforting to know that other people are dealing with similar issues. As usual, seeing and hearing about the things other families are working through gave us a lot of perspective on how fortunate we are that Blaise is as healthy as she is. While we talked with other parents, Blaise enjoyed the fawning attention of several off-duty therapists and one very interested two-year-old. Did I try not to panic when Blaise stuck all of the toys in her mouth? Yes. Did I succeed? Sort of.

And speaking of other kids, Blaise has another new little friend. We are delighted to say "Welcome to the world!" to Oliver, who was born to our friends Vanessa and Greg over the weekend. I'm sure playdates will ensue.

Saturday, September 19, 2009

Keeping on

Well, Blaise's blood counts did drop again, but we're going to keep with the current protocol for a while longer. We're trying to give the sulfasalazine (the anti-inflammatory) a chance to get working before we do anything drastic. The real issue with all of this is that what Blaise has looks like a food allergy in some ways: right kind of white cells, very typical allergic symptom, flares up in response to changes in diet, but it isn't quite acting like a food allergy: doesn't stop in response to dietary changes, sometimes stops without dietary changes, doesn't improve in spite of a seriously hypo-allergenic diet. To quote her GI doc, "this doesn't make any sense."

But lest you get too worried, here's what the surgeon from the CAIR team (and fellow MIT alum) said upon walking into the exam room on Thursday: "Hi, Blaise! You look great!" She was standing on my lap, happily bouncing. She tried to steal the GI fellow's key drive. She wanted to play with the nutritionist's calipers. She doesn't seem like a sick baby, which makes it all the more frustrating to not know what's going on.

So enough with the downers. Here's what Blaise has been up to while not freaking us out with bloody diapers. She has discovered that by rolling several times, she can go places. Very dangerous discovery, that. She is desperate to crawl, but she just doesn't have the strength in her arms. We're going to try some tummy time on a yoga mat to help her with traction. She's very interested in feeding herself, grabbing for her bottle and trying to guide it into her mouth, even though her hands aren't big enough to hold the bottle itself. She also loves to play with the spoon and tries to feed herself rice cereal. It's a big mess, but it's very fun. I took some pictures of that mess yesterday. When I find the cable for transferring photos from the camera, I'll get them up.

Thursday, September 17, 2009

Clinic recap

We headed in for short gut clinic today. We gave the usual spiel and an update on the blood situation. (Hint: It's still there.) The good news is that in spite of her bout of throwing up over the weekend, Blaise has grown well since we were there 10 days ago and is now 10th percentile for weight and length based on her corrected age (7 months). She's still not on the curve for her real age, but that's to be expected. They're very happy with her growth. Her color is good, she's very active and alert and seems healthy as can be. The bad news is that the blood still has us flummoxed. We drew labs to check her blood counts. The nurse practitioner will call in the morning with the word on those. We're keeping up with the nightly steroids and the oral anti-inflammatory. Between supplements and actual medications, Blaise currently gets 9 oral doses of something a day. We're going through a lot of oral syringes.

In much more fun clinic news, we were able to catch up a bit with Faith (a fellow Omegaven baby) and her mom. They first came to Boston from Colorado for Omegaven a bit before Blaise's second surgery. Their fantastic news is that Faith is thriving off TPN and her central line came out yesterday. Huge congratulations to their family! We also met Sam's dad, but not Sam himself, as he, unfortunately, was in surgery to get a new central line. Sam's family travels from Wisconsin for Omegaven. Talking with other Omegaven families is always nice because, no matter how hard they try, most people just can't understand what living with short gut is like. Hearing war stories from other parents also makes us realize just how fortunate we were to live in Boston where Blaise got the care she needed with minimal fuss. We wish both families safe journeys home.

Tuesday, September 15, 2009

Full disclosure

We post a lot of happy and cute photos of Blaise. We've had several people tell us that we must have the happiest baby in the world. She is pretty easy-going most of the time, but in the interest of honesty, I'll confess that she can be fussy; we just don't tend to grab the camera when she's crying. She's going through a very clingy period right now and sometimes even stepping to the other side of the room can cause a crying jag. Today, I was putting the liner back in her diaper pail, having emptied all of the clean diapers into her crib for folding. This is what happened:

How am I sure these were crocodile tears? Well, here's a photo from about 10 minutes later after we finished folding the diapers:
In other news, we've started the new multivitamin, which is going well so far. At the very least, Blaise doesn't spit it up within an hour of taking it, an improvement over the last vitamin. We had no luck getting the blood under control by removing everything interesting from her diet and giving her nightly steroid enemas, so we're giving up on the project of figuring out what she's reacting to and giving her an oral anti-inflammatory medication. Her blood counts have apparently been dropping over our last few visits to Children's, indicating that she is losing significant blood over time, which no one is happy about. It's really important that we control the bleeding in her gut if it has begun to compromise her red blood cell counts and push her toward anemia. If her counts don't stabilize soon, we may have to be readmitted for "bowel rest" (or putting her on an IV so we can stop feeding her for a day or two, which really, really sucks). We have clinic on Thursday. We'll figure out then what to do next.

Sunday, September 13, 2009

Doing better

We are pleased to report that Blaise is much more herself today. She's still a little off in terms of eating, but she's been playful and fairly happy. No more vomiting, either. The g-tube is great for getting Pedialyte into a sleeping baby at a slow, steady pace, especially when that baby won't take Pedialyte by mouth. Another perk of the g-tube.

Blaise was even feeling well enough to make an appearance at our block party. She particularly enjoyed watching the bigger kids run around and trying to make friends with the other baby on the block (who is 2 months old and was asleep). Other highlights included the neighborhood dogs and our state representative, who was particularly taken with Blaise.

More recent photos are up on Picasa (links to the left). Look for shots of Blaise playing with her food in her new high chair.

Saturday, September 12, 2009

GI bug

Blaise has been fighting a bit of a cold for about a week. Last night, she was having some difficulty with a bit of mucus in her throat and then threw up. We thought, okay, she swallowed the mucus and then up it came. But then she threw up after her bottle this morning. And again a couple hours after lunch. Not spit-up, which we're quite used to, but actual vomit. And she's not very interested in eating. And her poop is really runny.... We called the pediatrician (whose off-hours triage line goes to Children's) and the over-the-phone diagnosis is gastroenteritis. Blaise has a stomach bug.

I remember being told, way back at the beginning, that Blaise would be particularly susceptible to gut nasties and that other kinds of viruses (e.g., colds) could migrate to her gut very easily. It seems like that second thing has happened. We have her on continuous g-tube feeds of pedialyte right now and we'll try some half-strength formula in a couple of hours. Like any sick baby, fluids, rest and cuddling are the current plan. And laundry. Lots of laundry. We're hoping to stick to the regular sick baby plan and avoid a middle-of-the-night page to the GI on call at Children's.

Friday, September 11, 2009

Brunch with Blaise

I don't actually have very much to say here, but this is just too great a photo to not post. Here's Blaise sitting at the table with me, Erin, and her Grandma & Grandpa Balas at Johnny D's (our favorite brunch spot). We've been regulars there for a pretty long time now, but went on a serious hiatus while Blaise was an inpatient. I think the host and the waitstaff were all pretty stoked the first time we came in with a stroller...recently, instead of having her hang out in the car seat, we've been giving Blaise a shot at sitting up in a high chair so she can see what's going on. As you can see, it works pretty well:

Blaise is a big fan of the menu, incidentally. By that I mean she likes to eat the menu itself rather than order anything from it. No accounting for taste, I suppose...we've just taken to keeping one with us for the duration of our visit.

A pretty quiet cloudy day here in Boston, which seems to have made Blaise very interested in snuggling down and reading. Not a bad way to spend a day, or even a whole weekend.

Wednesday, September 9, 2009


Before you, our friends, take any offense, be warned that we might not update to say that the blood is improving even if it's true. I'm beginning to suspect that the act of telling people that things are great on that front might be what causes the blood. I never thought of myself as a superstitious person, but now that I think of it, that might just be because I was comparing myself to a bunch of Irish Catholics.

Blaise is doing great, though. She doesn't seem to mind the Elecare-and-rice diet nearly as much as I would. We had a nice, relaxing at-home day, having cancelled her early intervention appointment yesterday when we thought we were being admitted to Children's. Instead, we played the very fun game of "Try to fold all of the socks before Blaise soaks them in drool." (She grabs them out of the pile and slimes them in a very systematic way.) I talked with the GI this afternoon and the current care plan is to stick with the status quo on food and go back to nightly steroid enemas until our clinic appointment next week. We're trying to adjust to the idea that this might just be what Blaise's gut does in response to many things and that the process of introducing solids could be very start-and-stop. It's frustrating because she's doing so well everywhere else. Even the GI doc said as much. It's hard to know what to do about a kid who is great but having one troubling symptom.

Tuesday, September 8, 2009

Back the same day

Blaise seems determined sometimes to keep things more interesting than we'd really like. After almost a full week of basically no scary/bloody diapers, what did we see (repeatedly) late last night and this morning? You got it: extremely scary/bloody diapers. Obviously no one wants me to go into detail, but suffice it to say that Erin and I have acquired a fairly high freak-out threshold for this sort of thing by now and we were both thoroughly rattled.

So we called our NP at Children's and hung up the phone pretty certain we were going to be re-admitted. I wrapped up things at work as quick as I could, reserved a Zipcar for the day, and drove home while Erin got Blaise ready to go with a bag full of toys, books, and all the necessities. Thankfully, we didn't have to go through the ED. We went straight upstairs to see her old friends in the CAIR clinic and made visits to outpatient blood draw and radiology after giving a quick history upstairs. We kinda figured we were looking at having to go NPO (no food) in preparation for another colonoscopy and weren't thrilled about the idea, but what do you do? Blood is scary...wicked scary, as they say in Boston, and ruling out or addressing anything serious is critical when you've got a sudden change like this.

The blood draw came back looking totally normal...white counts were fine, red counts were fine. No problem. The X-ray? We started getting worried because the "2nd look" they told us to wait for seemed to be taking a while. Very hard not to have flashbacks to the ultrasound
we had at 20 weeks along...we both have a very acute sense of how long "2nd looks" should and shouldn't take, and this felt like it was veering into the realm of too long. Happily, we were freaking out over basically nothing. Well, not actually nothing, but not anything surprising or outside the realm of what we've seen before. Her GI doctor could see inflammation in the sigmoid (the bottom bit of the colon) which is very likely to be the source of the blood. Why is it inflamed? Her blood labs, while in normal range, also showed evidence of eosinophils,which are the kind of white blood cells you see following an allergic reaction. What does that add up to? More or less exactly what we saw a little while ago, just with worse bleeding last night.
Maybe bananas are the culprit...maybe something else. Either way, she looks great, played and napped pretty well despite the impromptu trip across the river, and her team thinks just holding off on the new solids may do the trick for now.

A bit scary, a bit frustrating, but Blaise is sleeping in her bed right now and we both feel a lot better for that. Atka the polar bear is always ready for duty, but it's nice that he (and us) get to hang out with her at home. What does this all mean in the long term? A little hard to say unfortunately, but our doctor tells us that babies tend to grow out of this even if you don't ever find a root cause. This may mean we have to move a lot slower than we'd like, but Blaise has done well with slow and steady before.

Speaking of doing well, one very nice thing to come out of all this (and our previous return visits) is that everyone there is very happy with how she's growing and how good she looks overall. We had a request for some statistics on our last post, and we are of course happy to oblige: Blaise weighs approximately 0.407 slugs and is just under 0.373 Smoots long (that's also 2.058 x 10^-17 parsecs for you astronomically-minded readers). It's great to see such progress!

OK, today was a bit stressful and scary, but yesterday was great fun. Blaise got to hang out all day with us and our friend Kate, who went with us on another fun trip to the local playground. Just like on our first adventure, the swing was a big hit:

We thought the slide might be equally fun, but I get the impression Blaise was less certain about it:

Sunday, September 6, 2009

More fun with food and family

I am pleased to report that Blaise likes bananas much better than she likes avocados. She's not had any issues from them, so hopefully they can stay in her repertoire. The rice-cereal-and-elecare diet was getting a little dull, at least for me and Ben. Blaise didn't seem to mind. Still, a little variety is a good thing and we want to make sure she doesn't lose interest in different tastes.

We were in Providence on Thursday so I could retrieve some data and meet with my PhD advisor about a paper. Blaise came along to meet all of the people at Brown who have heard plenty about her. She did very well on the car ride and had fun making new friends. Did she nap? Not until we got in the car to go home, so she was a little less than cheerful for the last half hour or so that we were there.

Then on Saturday, we took a walk to the park to play on the swings. We'd never tried that before and Blaise loved it!

Ben's parents came into town yesterday afternoon and left just a couple of hours ago. It was nice to see them as always. We took advantage of their car to make a trip to Babies R Us for a high chair and Costco for 88 lbs of cat litter. Blaise did surprisingly well at both stores, especially since she hadn't napped in the morning. Then she fell asleep on the way home.

Ordinary baby stuff. We can live with that.

Wednesday, September 2, 2009

Avocado, Take 1

Blaise woke me up this morning at 4:50 AM. Most of the time this is a quick diaper-change-and-cuddle event and then she's back to sleep. Not today. I'd say I at least enjoyed the sunrise, but you can't really see the sunrise from our apartment. There's a building in the way. Instead, I enjoyed some coffee.

We seem to have officially decided that the culprit for the blood was the multivitamin. It turns out that the insurance won't cover vitamins, but the new one is less expensive than the one we were buying before, so it's not that big a deal. Having absolved solid food of any responsibility for blood, we were cleared to start introducing new solids again.

Today we tried avocado. We're working alphabetically through the fruits (started with apple; banana will be next; apparently skipping apricot). First I let Blaise sort of suck on a chunk of avocado while I held it, but she kept grimacing. I thought she might not like that approach to eating, so I mashed some up and gave it to her on a spoon. She took two tiny bites, grimacing at both, and then gagged and vomited. Not just spit up, actual vomit, which she almost never does. Fearing that I had somehow induced an instant oral aversion, I cleaned her up and then tentatively tried some rice cereal. She scarfed that down as usual. I guess she just doesn't like avocado. We'll try again with it in a little while, but maybe it's time for banana.

Tuesday, September 1, 2009

Adults say the darnedest things

Overall, Erin, Blaise, & I have been pretty fortunate as far as rude/strange comments from people go. Sure, we've had the occasional odd look from someone when they've noticed the feeding tube, but all told we've encountered far less of that sort of thing than many parents we know. Still, every so often someone we run into apparently has an uncontrollable urge to say something ignorant or idiotic to a complete stranger, and luckily we're there just in the nick of time.

Now the few times this has happened to me, it's always been the case that the person in question probably had no idea that Blaise had any kind of medical condition. They were just engaging in the usual "Let me tell you how I raised MY baby..." kind of stuff that must sound like "good advice" to them and actually comes off as "pompous" to the rest of us. I usually just nod in a non-committal way and say things like "That's great" or "That's really interesting, thanks."

Today's encounter wasn't so much different than others, but for some reason it got under my skin. Blaise and I were heading up to Arlington to pick up some meds from her pharmacist (who's this incredibly nice guy named Larry) and at a particularly long stop light, this woman looks into the stroller and sees Blaise:

Her: "What a cute baby! What's his name?"

Me: "Her name's Blaise."

Her: "Oh! She's a girl. She's dressed like a boy, you know."

Me: "Sure. Y'know...lots of hand-me-downs. She likes shirts with animals on them."

Her: "How old is she?"

Me: "8 months today."

Her: "My goodness! She's so SMALL! I can't believe she's really 8 months. She looks like a much younger baby than that."

Me: "Well, she came a bit early..."

Her: "MY Bradley was much bigger when he was that age. MUCH bigger. He was such a big strong baby...definitely a lot bigger than that." there's lots of ways I could have responded. The old smile-and-nod would've gone fine. So would anything from my repertoire of interested-sounding-grunts, I bet. For some reason this got to me though, so I decided to let her have it.

Me: "Yeah. I bet he was born with all of his intestines."

Her: ...

Me: "See, she's only got about a third to a half of what she's supposed to have. Surgery the day she was born. Big scar on her belly and a lot less intestine. She's got a feeding tube into her stomach, but we only use that at night now. SO much better than the IV."

Her: ...

Me: "So yeah, she IS a bit on the small side."

Probably not my finest moment, but not exactly her peak either. People are so weird. Who looks at a baby that's on the small side and tells the parent about how much bigger and stronger their baby was? We were of the opinion that stupid parent one-upsmanship was nuts when we thought Blaise was going to be your typical healthy baby. In light of what actually happened (and the many parents we know facing more difficult circumstances), nothing seems more petty.

Blaise and I kept walking and we ended up witnessing a minor traffic accident (it was an eventful walk). One car rear-ended another fast enough that the next three cars ahead in line ended up damaged. Everybody pulled over and the woman in the first car to be struck got out rubbing her neck and holding her arm a bit funny. Passers-by were gawking and the people in the cars were obviously doing the insurance/"do we need to call the cops?" song-and-dance. Doing my part to help by mercilessly rubber-necking, all I could think was that the woman I just spoke with clearly had no idea how little it takes to push anybody beyond what is normal and easy and convenient. Those people in the cars? 60 seconds ago everything was normal and boring, and all it took was one idiot texting while he was driving (yup, for real) to seriously mess up their day. If his foot had been just a bit heavier, it could have been much worse.

I'm clearly over-thinking all this, I know. To a certain extent, the fact that parents feel comfortable saying rude and implicitly judgmental things to us in public must be a sort of commentary on how well Blaise is doing. Still, I guess it served as a reminder that no matter where we go from here, I will likely never think about kids, mine or anyone else's, quite the same way as other parents.

OK...enough heavy stuff. The little cub had a great day today, just hanging out with me after I had another long day of testing at MIT on monday. We walked a lot, we played a very fun game of hide-and-seek with one of her teddy bears, and she even took a solid nap in the afternoon, which she rarely does for me. Of course, she made up for it by shrieking for a decent chunk of the early evening, but so it goes.

More pictures soon!