Cows and other weekend fun

We're settling down after another busy weekend. My dad was visiting on Friday and Saturday. Blaise had so much fun with her Grandpa Tom that she didn't take a real nap either day! It was, as usual, fun to show Blaise off to someone who hadn't seen her in a while. She's getting to be a big kid and is lots of fun to play with.

Then on Sunday, our friends Kate and Andrew were having their joint birthday event, a long bike ride to Great Brook Farm for fresh ice cream. We didn't bike, but we did drive out to meet everyone else. The ice cream was great, the cows were smelly and our friend Reid made a new friend.

We did let Blaise have a teeny-tiny taste of ice cream. I'm not even going to think about all the reasons we shouldn't have done that. We're kind of paranoid about her and food, for good reasons, so we only gave her the smallest bit. She loved it and kept licking her lips for more tastes. She didn't seem to have any bad reaction; if anything, the blood issue was actually better post-ice cream. Clearly we should be giving her tiny bits of vanilla every day. The only damper on the afternoon was my realization that I had left the nipple for Blaise's bottle at home. There goes that Mom-of-the-Year nomination. Fortunately, she fell asleep on the ride home before she got too hungry.

Today, Blaise went to MIT to see where Ben works and to meet his colleagues. This was her first ride on the T. She did really well and particularly enjoyed meeting Charley, Ben's advisor's dog. A lot of people ask if Blaise will go to MIT, especially when they see her MIT mobile and learn that Ben and I both went there. We always say that she can go wherever she wants except CalTech. She is very interested in playing with her rocket ship, but her enthusiasm for literature can't be ignored. Just yesterday she was making some intriguing observations about Finnegan's Wake (board book edition).


Word from the CAIR folks is that we are not going to try a systemic anti-inflammatory. We're switching to a different multi-vitamin, once we get the insurance worked out. Hopefully, this will resolve the blood issue. We're also holding off on new foods for a little while longer. I didn't tell them about the ice cream.

When pluses become minuses

One of my favorite things about Blaise is how interested she is in the world. She loves to ride facing out in the wrap or the baby carrier so she can check everything out. She only gets overwhelmed by busy places when she's really tired. This curiosity and interest in what's going on around her is a really fun aspect of her personality. Right now, though, I think it's frustrating her a bit because she can't move herself around at will.

Her therapist was working on getting her to try scooting, but Blaise just doesn't have the arm strength. It's her main physical weakness. She can hold herself up on her arms only for a few seconds at a time and she can't use them to pull herself anywhere. But she really, really wants to! There are cats to chase! Holding Blaise while the cats are nearby has become a serious challenge. She struggles and leans to reach for them, often squealing gleefully. They run and hide. This, kiddo, is why you should take your tummy time more seriously. I suspect that once her arms are strong enough, there will be no stopping her.

I have really mixed feelings about a mobile Blaise. Of course I want her to grow and develop skills and become independent. I just have a sense that this kid is going to be very independent and very curious, which are good attributes in the long run, but tricky in a toddler or older infant. Her interest in her g-button causes us enough stress and I can't tell you how glad I am that she no longer has a central line to play with or an ostomy bag to pull off. Once she gets moving, our lives are going to become even more chaotic than they currently are. The cats have already placed ads seeking new families on Craigslist. We, on the other hand, should start babyproofing in earnest.

Not much to report

Blaise is doing really well. We're in phase 2 of Operation No More Blood. We stopped giving Blaise her vitamins late last week. We've definitely seen a decrease in the amount of blood, but we're still seeing some. We're also, obviously, not crazy about having her off her vitamins. Short gut kids can have big problems with vitamin deficiency and we'd rather not go there.

Between diapers, though, we're having lots of fun, especially with the exersaucer (on loan from her buddy Max and his family). Now Blaise can bounce up and down and play with toys at the same time without giving me a serious core-muscle workout. She's also increasingly finding her voice and we're hearing more and more consonants (mostly nasals and voiced stops). She's working hard on some teeth, which means that everything goes in her mouth and the drool factory is running 24/7. New photos featuring both the exersaucer and drool will be up soon in the album called August.

**Update** It seems we've been a little shutter-happy and Blaise has been very photogenic lately. There are tons of new photos up.

Thursdays with Dad

Here’s a statistic: Something like 90% of a baby’s diapers are changed by it’s mother, regardless of whether the baby’s father reports being “very involved” in child care. Even when couples report that they try hard to be co-parents and be equally involved in their child’s care, Dads have a tendency to err on the side of playtime and an ever more pervasive tendency to brag later about how much baby maintenance they do.

This came up at a meeting with my post-doc advisor at Children’s while we were talking about the design of a study. The lab is very interested in how kids’ experience with different people, places, etc. can influence their development, so the question of what kind of time kids spend with Mom and Dad is highly relevant. Erin was pregnant at the time of this discussion, and I remember silently vowing to not leave her stuck with all the dirty diapers. This was well before we had any sense that anything unusual was going to happen…we were still just overwhelmed with trying to figure out how to be a dual-career couple with a newborn. Teamwork, I figured, REAL teamwork had to be the only way to make this work. Erin & I are both very defensive of each other’s careers and try to make time for each other to get important things done…we got through writing our dissertations that way, we’ve made it to the finish line when racing against grant and conference deadlines that way, and I figured it had to be the best way to take care of Blaise. Typical parental investment statistics be damned! I was going to change a lot of diapers. Now look, Erin’s changed more…but I do think we’re not so near that 90/10 split I mentioned earlier, even if we’re also not at 50/50.

On a typical day, we trade off morning and afternoon shifts, which is a great way to maintain parity. It also encourages serious optimization of your time. When Blaise naps on a work day, the first thought is always “OK, how much time do I have and what can I do?” Laundry is quick to get started, GO! Eyetracking analysis needs 30 minutes and I can easily stop halfway…GO! Coffee! I made coffee earlier! I should drink it! GO!

It works out pretty well, really, but it wears you out…and then, you go to work.

Yesterday though, we did something we hadn’t really done before and it was awesome. I’d spent a lot of time last week working long days at MIT, leaving Erin flying solo, so Thursday was my day with Blaise. Just the two of us, with lots of time to take care of what she needed done, play with whatever we wanted, and do household chores without playing beat-the-clock. Here’s a great game we developed:

1) 1. Dad builds a city out of busy blocks.

2) 2. BLAISE DESTROYS

3) 3. Dad attempts to rebuild Neo-Tokyo in the wake of disaster.

4) 4. BLAISE DESTROYS

5) 5. Dad builds a series of ranch-style houses that are less prone to earthquake/giant baby damage

6) 6. PETER RABBIT DESTROYS

Awesome. Seriously, it was great fun and Blaise was extra-cute all day. I also do still occasionally stop and marvel at the fact that we can take care of Blaise. It was often hard to see through the tangle of tubes and wires how we were going to be able to do that without a lot of professional back-up. Being able to spend a whole day with her with no back-up is pretty great, even if she doesn’t always want to nap.

Back to the day-to-day

After a whirlwind week of visitors, cookouts and spur-of-the-moment clinic visits, we're settling back down to normal. Blaise loved seeing her Uncle Pher and Aunt Kim (in spite of a little stranger anxiety) and kept up her pattern of saving developmental milestones for my parents. Back in May, my dad witnessed her first out-loud laugh. This past weekend, Blaise actively played peek-a-boo with my mom, covering her own face and everything. Of course, all this activity completely destroyed her carefully controlled sleep schedule. What would Dr. Weissbluth say? Probably "I told you so."

All is quiet on the medical front. Blaise still loves her rice cereal and I'm sure would be happy to see other food. The blood hasn't gone away, but it might be getting better. It's certainly not getting worse. That was a covert reference to poop, so here's a picture of a cute baby.

Impromptu clinic visit

We had been back and forth a few times on the phone with our nurse practitioner at Children's about the blood in Blaise's diapers. Because her care is overseen by a team of three doctors from three different services, this ends up being a major project for the NP as she pages all of them, consults and then tries to get a coherent plan. So we decided this morning that it might be better for us to head into clinic this afternoon.

This was a very good idea. Clinic can be a little overwhelming because all the doctors show up at once, but it's also very handy to get all of them in one room. The blood issue is, in the words of one doc, an annoyance, not a threat. He's right: it's not affecting her blood counts or her behavior or any other indicators of general health. Blaise is growing, healthy and happy. We still need to get this under control, so here we go. New plan: Steroid enemas every night for a week. If that doesn't help, we'll take her off the vitamins for a week, since there is a coincidence of restarting the vitamins and the recurrence of blood. If that doesn't help, we'll go for a systemic anti-inflammatory med. It's good to have a plan, especially one that makes a lot of sense to us and involves some waiting and manipulating individual variables. We like manipulating individual variables. Unfortunately, our food adventures are on hold until we get this sorted out. Blaise can still have rice cereal, but no fruits or veggies for a while.

Our favorite part of any visit to Children's is swinging back by 10 East to say hello to Blaise's old nurses and let them ooh and ahh over how much she's grown (currently at 12 lbs, 6 oz). We found out while we were up there that one of our long-term roomies had her ostomy closed today. Yay! We were also a little sad to see that some of our roommates and neighbors are either still in or back in. We hope they're all doing well and that they can get home as soon as possible. After stopping at 10 East, we headed over to the next unit to say hello to a friend from grad school whose daughter had surgery earlier this week to correct scoliosis. We figured a cute baby might help cheer her up a bit. We wish speedy recoveries all around.

Again....

I'm going to start with a cute picture because, yup, I'm talking about stool again. What can I say? We're a little obsessed.

The short version: the blood was gone. Now it's back. We went nearly a week without seeing it and we thought, great. The doctors told us to finish out the month-long course of steroids and then we'd be good. Starting mid-week last week, we starting seeing blood again. A little spot here or there isn't anything we even comment on anymore, but this is more than that. We're not quite where we were, but it's also not so minimal we can ignore it.

The good news: Blaise's blood counts are fine. Whatever this is isn't inducing anemia or electrolytic imbalance. The question is: What is it? As an allergic reaction to the new solids goes, it's weirdly timed. It started after 10 days on rice cereal but before introducing apples. If it's an allergy to the Elecare, why would it go away and come back while she was on it. We were still giving the steroids, so wasn't an absence of those that caused it. The only thing I can think of was that she was off her vitamins for a while and is back on them, but that doesn't make any sense either. If this is all being caused by the same thing (which would be parsimonious), she didn't start the vitamins until after the first bleeding episodes back in May. It could just be that this is the way Blaise's gut responds to any kind of irritant. This is going to make introducing more foods tricky. How will we know if the blood is a response to a food or just a "Blaise thing"? The scientist in me wants to isolate a cause and manipulate one variable at a time. The mom in me wants to have fun trying new things. The scientist will probably win on this one. There's no reason to ditch reason here.

In the meanwhile, our big girl is still doing her thing. Sitting, eating, playing, laughing, rolling and making the other stuff easy.

You asked for it

More pictures are up on the photo site! There are a few in an album called Adventures with Food, that we are likely to keep adding to as Blaise's eating experiences continue. There is also a catch-all album called August that we will be updating as I remember to take the pictures off the camera. At the moment, it contains some sitting up photos and plenty of generic cuteness.

On our end, we had a fairly quiet weekend, gearing up for lots of visitors this week. Whoever told Blaise she doesn't need an afternoon nap is in serious trouble with me.

Sitting

The formula Blaise is on is Elecare. You won't find it in the supermarket. It's an "elemental" formula, meaning it's already broken down for easy digestion. It's made up of free amino acids (instead of chain protein) and special fats and it's really, really nasty tasting. It's labeled as "medical food" which should be a tip-off that it's nothing anyone should want to eat. When we mix her rice cereal with it, the cereal tastes more or less like thick Elecare. That's also pretty gross. Blaise doesn't mind. In fact, she thinks it's great. She doesn't know better. The apples were her first experience with food that doesn't taste like Elecare. This afternoon she finally shifted her opinion from "I don't know. This doesn't taste like Elecare" to "Hey! This doesn't taste like Elecare! Yippee!" It's time to make more baby apples. A couple more days without a reaction and we'll try expanding the repertoire again.

Speaking of expanding repertoires, Ms. Blaise has decided that she can sit like a big girl, at least for a few minutes at a time.

She's still working on shifting her weight to avoid tipping over when she reaches for something, but one step at a time. A girl can only think about so many things while she plans a space mission.

How do you like those apples?

We tried the apples with Blaise this afternoon. She's not convinced, but she wasn't so sure about the rice cereal at first either. New texture, new taste. It might take her a couple of tries to decide. But she did make some great faces during the trial run.

I also want to give a little history on the fancy baby food maker. It was my Christmas gift from Ben's parents. Ben's parents have a really hard time getting gifts for me. It's my fault. I'm a hard person to get gifts for, mostly because I'm not a "stuff" person. I really do mean it when I tell people not to get me things for holidays, but people like to give gifts, so this conundrum of what to give Erin for Christmas is an annual tradition.

Last fall, well before we had any inkling that anything was wrong with Blaise, Ben's mom saw the Babycook at Williams Sonoma and thought "A-ha! Erin likes to cook. She'll probably want to make food for the baby. Perfect!" She asked Ben what he thought and he thought "Great idea!" Everyone was relieved that we could skip the "But surely you want something?" conversations. It also fills that nice gift niche of something I would never buy myself, but would definitely use if I had it. Then, after said gift has been purchased, we had the ultrasound showing a blockage in Blaise's gut. Then it was a gift that folks might feel a little weird about giving, but, hey, everyone was saying she'd be just fine. Still a great idea for a gift. (I, of course, had no idea this gift existed.)

Fast forward to New Year's Day. I'm in pre-term labor and Ben's parents are driving as fast as they can toward Boston, with the Christmas gifts in the car (they had already been planning to come up). Blaise is born and taken straight to surgery and we get the news as we knew it then: She has hardly any healthy intestine left. If she survives, she may never eat. And suddenly, the excellent Christmas gift becomes utterly impossible to give me, the worst possible gift anyone could think of. They decide not to give it to me just then. Ben told me what it was a few days later. It sat, still wrapped, in our house until after Blaise's second surgery when the game changed again. Now our baby who might never eat is our baby who loves her cereal and will, I'm sure, learn to love other foods.

Thank you, Janet and Barry. It was a perfect Christmas gift. But this Christmas, seriously, just make a donation to charity. I'm impossible to give gifts to.

Stage 1!

In just under a week, Blaise has gone from being willing to eat rice cereal to demanding to be fed her rice cereal as soon as it's in sight. Seriously. She kind of eats like a Klingon (or a Viking, for those of you who aren't into Star Trek), with a full range of bellows, barbaric yawps, and righteous fury when the spoonbearer does not bear the spoon quickly apace.

For one thing, this is hilarious...my daughter eats lunch like she's the destroyer of worlds. For another thing, this means she's doing okay with solid food. No sign of any reaction after several days, so after talking with her team at CAIR (the Center for Advanced Intestinal Rehabilitation) we got the green light to try "Stage 1" baby foods as we see fit. This means pureed fruits and veggies for the most part, which includes a wide range of items that don't taste like Elecare. This also means that we get to try out one of our cooler new-baby presents:


Meet the "Beaba Babycook." This handy-dandy kitchen aid steams and purees the food of your choice in a couple of minutes. We can now turn basically anything we want into a pourable liquid! We decided to start with some apples...pretty sweet-tasting, easy to get, and pectin turns out to be a very good thing to give kids with short-bowel for a bunch of reasons. One button push later, and...
Voila! Blaise gets to try out homemade applesauce tomorrow! Who knows what she'll think of it, of course, but we can't wait to give it a shot. From here, we get to move on to other starter foods so long as Blaise doesn't show any signs of a bad allergy/intolerance. Sweet potatoes, peas, bananas, and lots and lots of laundry. We have to be a bit more cautious than usual (5-7 days between new things instead of 3-5) but this is seriously fun. Watching Blaise take in new stuff is always a good time, and this is a particularly broad array of new experiences for her to check out.

In other news, her last round of labs looks very good, save for signs of a slight calcium deficiency. This isn't uncommon for SBS patients and it looks like all we have to do is give her some calcium carbonate (think Tums) through her g-tube. Besides that little tweak, Blaise checks out pretty well.

On to new food!

Zoo

This morning, Blaise had her first adventure to a place that was not the hospital, the doctor or a friend's house. We went to the zoo! Franklin Park isn't the best zoo I've ever been to, but it's very manageable with a baby and they have a really nice gorilla habitat. In other firsts, Blaise also had her first experience with Cape-bound traffic on 93, a must-do if you're going to call yourself a Bostonian. Did Blaise have fun at the zoo?

Yes! She didn't see many animals because of the stroller. She was more interested in the bear on her carseat anyway. But the lion saw her.

And, as with any successful zoo trip, it wore her out.

More pictures (including one of the baby giraffe) will be on the photo site soon!