Thursday, December 31, 2009
Top 10 Short Gut Moments
10. Squirting 3 cc of breastmilk into a bottle nipple placed in Blaise's mouth; hoping it's not too much for her to handle
9. Blaise eats solid food
8. We use the word "jejunum" in a sentence for the first time
7. Erin pulls out the button
6. Ben pulls out the button (more momentous because it was the first accidental button removal)
5. Ben meets the other cognitive scientists who have a kid with short gut
4. Blaise becomes Omegaven baby #111
3. Our nurse admits that she also wants to cry because the ostomy bag fell off again
2. Blaise comes off TPN
1. "Did you say 45 cm from the Ligament of Treitz?"
Wednesday, December 30, 2009
Sunday, December 27, 2009
Saturday, December 26, 2009
Thursday, December 24, 2009
Tuesday, December 22, 2009
Thursday, December 17, 2009
Tuesday, December 15, 2009
Blaise had one of those days.
This is her new favorite pasttime.
Monday, December 14, 2009
She's still being a little finicky about eating sometimes. One day this weekend, she only let Ben feed her. Another, I had to sing "Mairzy Doats" over and over to get her to eat. And then there are days, like today, where she gulps every bottle and chows down on her solids with no problems at all. We had another weight check today while we were at the pediatrician's office for the second H1N1 vaccine dose. Her weight gain has been much better in the last 2 weeks; she's at 16 lbs even.
When not tearing all over her room on all fours, Blaise has begun forays into the world of finger food. We'd tried whole peas and chunks of carrot, steamed to be very soft, but those were a little slimy and hard to pick up. Most of the baby biscuits and dry snacks are a bit more complex than we're ready to try with Blaise, or contain something we're avoiding for the moment (e.g., milk, eggs, wheat, soy). Enter rice rusks, or Baby Mum-Mums. These are slightly sweet rice crackers that are supposedly a common first food in Japan. It took a few demos from me and Ben, but Blaise caught on pretty fast. Now she's self-feeding like the big girl she is. The box says these crackers don't make a mess. That is a lie. It's fun anyway.
Wednesday, December 9, 2009
Monday, December 7, 2009
Getting Blaise to eat enough is continues to be a challenge. She just seems to lose interest, especially in her bottles. Trying to eat in interesting places like airports doesn't help. We'll be seeing our friends at clinic again soon and Blaise's OT/PT has some suggestions for making eating more interesting. We're working on broadening the spectrum of okay foods and playing with combinations. Hopefully a little time back in the normal routine will help, too.
Tuesday, December 1, 2009
Monday, November 30, 2009
Thursday, November 26, 2009
Monday, November 23, 2009
Friday, November 13, 2009
Earlier this week was Blaise's first Monday Night Football Steelers game. It started well after bedtime, so she got some Terrible Towel waving in early.
We have discovered Blaise's favorite food. We were nervous about giving her peas because they were the first non-sweet non-Elecare-flavored food we were going to try. The response: a HUGE grin and eager grabbing for more. Seriously, Blaise would eat nothing but peas if we let her. We gave her some whole steamed peas last night and she had a great time playing with them, too, but none of them made it to her mouth.
We also returned to apples for the first time since the blood stopped. Things got a little, um, runny, so we've put them on hold for a couple of days and then we'll try again. The runniness could also have been fallout from her double flu vaccines on Tuesday. We did a quick weight check while we were in for the shots and are proud to report that she has cracked the 15 lb mark (15 lbs 1 oz; up 10 oz in less than 2 weeks!). We've bumped down to 8 hours/night on her tube feeds.
On the developmental front, Blaise has discovered the joy of taking items out of containers and occasionally of putting them back in. She's also begun raising her arms to be picked up, imitating sounds that we produce (just clicks) and giving wonderful, sweet proto-kisses. She'll deliberately turn to me or Ben, open her mouth and press it against our cheek. That might be the best thing ever.
Monday, November 9, 2009
Blaise made an appearance at the conference on Friday afternoon, much to the delight of blog readers who are also child language researchers. (There are a lot of you. I had no idea, but we really appreciate your support!) She didn't give a presentation this year, but I'm thinking to submit her name for the keynote next year. Her working title is "Maanabamaana: !nananama." Yes, that is an alveolar click; it's her new favorite sound. Although by this time next year, she should have some actual words.
More pictures, soon, I promise. Once I find the camera.
Friday, November 6, 2009
Please keep Gavin, his parents and especially his older sister in your hearts.
Monday, November 2, 2009
Our weekend was spent dressing a bewildered Blaise in her pirate outfit, eating delicious food with friends (Merry Thanksaween!) and packing up our house. It turns out that Cambridge requires all apartments rented to families with children under 6 to be certified lead-free. Let's just say that our 100+ year old apartment was very much not lead-free. Blaise's lead levels are totally fine. It not like she's chewing on the windowsills, but the law is the law. So we're moving out on Sunday for a couple of weeks while our house is deleaded. It's a big pain, but the upside is that we'll come home to fresh paint, new windows and a professional cleaning job. Our temporary apartment is just around the corner from some good friends and only down the (really big) hill from some others, so we'll at least be in good company.
Saturday, October 31, 2009
Thursday, October 29, 2009
Rules: Price-is-Right style. Whoever comes closest without going over wins. Answers may be in either pounds and ounces (US) or kilograms. Answers in other units will be accepted, but not converted. Grandparents who have already been told are excluded from competition.
Prize: Honor and glory among the readers of this blog.
For a full clinic recap, see below.
We saw several friends who were also in for clinic today. One of our old roomies just turned one a week or so ago and is doing great. Another, unfortunately, was getting readmitted. Such is the short gut life. We also met a new friend: a mom whose 4 month old son also has short gut due to a volvulus. She had seen our blog and said "Oh, this is Blaise?!" when we were introduced. I hope that seeing our big girl is encouraging to parents just starting down the short gut path. We drew (and continue to draw) a lot of support from reading blogs about other kids and it's nice be able to pay that forward.
Finally, tonight marks a big milestone for Blaise. As of tonight, she has spent as many nights in her own crib at home as she has in the hospital. We were told a long time ago that Blaise might spend most of her life inpatient. It's a good feeling to break even.
Sunday, October 25, 2009
We had swim class again today and Blaise's enthusiasm was so great that she kind of scared some of the other kids with her splashing. The instructor said "Well, she's got the kicking and splashing thing down." Unfortunately, she has no interest in the other aspects of swim class: blowing bubbles in the water, floating or holding the side of the pool. She just wants to chase the rubber ducks around the pool. I'm not saying I blame her. Ben took some videos, which we'll try to get posted soon.
We've ruled sweet potatoes okay on the allergy front. On to pears! (Yeah, that alphabetical thing has gone completely out the window.)
Saturday, October 24, 2009
Thursday, October 22, 2009
The big developmental change lately has been increasing focus on goals. If she gets in her head that she wants to roll onto her belly and look at a label on her changing table, she'll do it, even when she's partway through a diaper change. Of course, we can't get her to stay on her belly any other time. Her tube is an endless source of fascination and she actively searches for it when we hide it from her. We try reasoning with her. It doesn't work, so she just drives us crazy. Another of those things that's good in the big picture (who doesn't want a goal-oriented kid?) and trying in the moment. She's also developing an interest in other babies. She gets very excited about the photos of friends' babies on our fridge and had a good time playing with the other kids last night at our parent group.
Otherwise, things are good. Today is Blaise's last day on Flagyl and we're going to check in about the plan to discontinue the sulfasalazine. You all take me way too seriously, as I've heard a number of speculations about what "D" food we would try next. "A" was apples and avocados. "B" was banana. "C" was carrots. "D" was sweet potatoes. They're a hit.
Sunday, October 18, 2009
Yesterday I had Blaise in lab with me and she spit up a bit. This time, when my colleague asked, "Why is it orange?" I was able to give a much less exotic answer. "She just ate some carrots."
I like that answer better.
Wednesday, October 14, 2009
Tuesday, October 13, 2009
The wonderful thing about this family is that they do leave the house. They go to the YMCA and the park in between their many visits to the hospital. They are really doing their best to live a full life in spite of all of the medical crap, but the older and more complicated Gavin gets, the harder it's becoming for them. They're working with an amazing group to take a house and rehab/renovate it to make it fully accessible for Gavin. This group, called Erin's Dream (different Erin), uses as much volunteer labor and donated material as possible, but they also need a good bit of financial support. I know things are tight for a lot of people these days and that there are a lot of kids and families who need help, but if you find yourself with a little extra, this is a really simple way to help one family. Here's the link for donations. If you want to read more about mito, click here. For Gavin's blog, go here.
Thanks for putting up with my heartstring-tugging.
Sunday, October 11, 2009
Saturday, October 10, 2009
Thursday, October 8, 2009
First, the weigh-in and other measurements. She's at 13 lbs. 10 oz. and 25.5 inches. Her weight is up, but it's not as up as we'd like it to be. She's fallen off that 3rd percentile growth curve she was clinging to. In reality, no one follows a perfect curve and starts-and-stops are to be expected, but no one wants to see this continue. Ideally, she'd be gaining faster and we could start to reduce the overnight tube feeds, but for now we're just going to try to get her to eat more by mouth.
Hey! I have a great idea! Since the blood is lessened, let's give her some new foods, which would add some calories. That's what the nutritionist had in mind. That's what the GI had in mind. That's what we had in mind. Then she pooped blood during clinic. Well, crap.
Now new food is still on hold, at least until next week. We're stopping the steroid enemas because, honestly, they didn't seem to be doing much. We're sticking with the oral anti-inflammatory medicine and adding Flagyl, an antibiotic. Blaise hasn't tested positive for any bad gut bacteria, but we sent another culture for c-diff today. I guess even when they can't identifiy a specific bug, sometimes antibiotics help. At least she had the bloody stool during clinic and not 3 hours later when we had been told that all was great and full speed ahead. I was also starting to get paranoid that her GI thought we were crazy because he had never actually seen blood in her diaper. So now he knows we're not crazy. At least, not crazy in a making up medical symptoms kind of way.
It's hard to not feel a little defeated because no one knows for sure what's causing this or how to treat it. It will lessen and then worsen for no apparent reason. Adding the new antibiotic to Blaise's med schedule puts her at 14 oral/tube doses of meds or supplements daily. We need a spreadsheet to keep track of them all. If the Flagyl doesn't help and all the cultures remain negative, they'll want to do another colonoscopy. I know it could be worse. It could be a lot worse, but I still don't have to like it.
As usual, if you didn't read this blog, you would never know to look at Blaise that anything is up. She's active, cheerful, eating, sleeping and babbling up a storm. Her phoneme inventory exploded last week, going from just b, d, w to include m, n, g, l and several new vowels in the space of about three days. She enthusiastically joins conversations as well. She's just a happy, generally healthy baby who happens to have blood in her diapers.
Monday, October 5, 2009
Also, the rings-on-a-stick toy is fun for all ages.
Finally, camouflage is very helpful for sneaking up on sleeping dads.
We had fun, but we're glad to be home. More pictures are up on the photo site.
Monday, September 28, 2009
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
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
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
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
How am I sure these were crocodile tears? Well, here's a photo from about 10 minutes later after we finished folding the diapers:
Sunday, September 13, 2009
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
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
Wednesday, September 9, 2009
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
Sunday, September 6, 2009
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
Tuesday, September 1, 2009
Monday, August 31, 2009
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.
Thursday, August 27, 2009
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.
Monday, August 24, 2009
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.
Friday, August 21, 2009
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.