Friday, July 31, 2009

More new photos

Not much to report. Blaise is still working on rice cereal. We went for a blood draw yesterday to check her nutrient levels. I'm assuming that no news is good news there. We're just hanging out, having fun and working on eating and gross motor skills.

Mostly, I'm posting to let you know that there are more new photos up in the June/July album, including a super-cute series of Blaise doing tummy time with Ben.

Monday, July 27, 2009

Oh! That's how this works!

Blaise's rice cereal experience went much better today. She downed the entire amount that I made (honestly, not that much, but...) and would have had more. It turns out that you're supposed to open your mouth, slurp/chew the cereal off the spoon and then swallow it. She's still working on coordinating the motor program and we're still watching closely for weird reactions, but, well, see for yourself. (Notice how little is on her chin and the seasonally appropriate bib is completely clean.)

Saturday, July 25, 2009

"Solid" food

We got clearance at our last clinic visit to try rice cereal with Blaise. We decided to make sure she was doing okay with the big bottles before we introduced anything else. Two weeks and 10 oz of weight gain (!) later, we figured we'd give it a try.

She was completely indifferent to the taste and had no idea why we were trying to stick a spoon in her mouth. When we give her a clean spoon to play with, she pops in right in her mouth, but I guess us doing it was too weird.

Still, not total failure. She didn't gag or retch or anything. It's hard to say whether she swallowed any cereal, either, though. We'll keep working on it. We also have to wait a bit and make sure she doesn't stool out or get a rash or anything. Here's hoping this goes smoothly.

In other news, Blaise is still falling asleep on her back and waking up on her belly. The International Brotherhood of Gnomes who Flip Babies Over While They Sleep has denied responsibility. If you have any information that might bring the perpetrators of these attacks to justice, please contact Blaise. Anonymity is guaranteed.

Tuesday, July 21, 2009

Starting early intervention

Today was Blaise's first real early intervention visit (as opposed to the three previous visits, which were all prelude, apparently). She did great and didn't even complain about spending so much time on her belly. The therapist seemed very impressed, so we must be heading in the right direction. Unlike during the assessment, Blaise was in fine form this morning, showing off all of her most recent skills.

When Ben's parents came to visit last, they brought an old electronic keyboard, thinking Blaise's fondness for music might make that a fun toy. She's been banging on it occasionally while sitting in our laps at the table. I decided to use it this afternoon to get her through some more time on her belly. It started off super-cute. (I know she's my kid, so I shouldn't say it, but really.)

Then it devolved into a Dean Martin impression, as such things are wont to do.

Monday, July 20, 2009

June/July Pictures

Not much to report around here. Blaise continues to do very well with her bottles and we've been given the green light on trying rice cereal sometime in the next week or two. We might wait a little bit to see if the blood in her stool clears up before we try anything new. It's looking better, but it's not completely gone. Fingers crossed.

Instead of news, I finally got around to posting photos from the last month. They're here.

Sitting is very hard work, even with help from the Boppy. Blaise tipped over about 3 seconds after I took this picture.

Thursday, July 16, 2009

Boring is good

This is becoming a very boring blog. You started reading in January or February about a cute, tough little baby fighting really lousy odds. And she completely turned the tables on those odds. A "less than 1%" chance of ever coming off TPN became no TPN and normal daytime bottle feeds in the space of six months. So now we have a cute, tough little baby who is really just doing normal cute baby things. Boring is good. We like boring. Now if the paparazzi would just leave us alone!

A week into this on demand daytime feeding thing and Blaise is doing great. She happily takes 3-4 ounce bottles several times a day with relatively little problem. She's gaining weight (up to 11 lbs, 5 oz) and having fun. Her mood is a little different, probably because she's learning to deal with the fluctuations in blood sugar levels that come with not eating constantly. She still has great happy times, but she gets cranky from hunger now. Who knew?

Monday, July 13, 2009

Adventures in "normal"

When we left clinic last week, we were told to feed Blaise "bottles during the day like a normal baby." No fixed schedule, no fixed amounts. "On demand" feeding. There is one problem with this plan: No one involved has any idea how a normal baby eats. We're working on it, but Blaise doesn't recognize hunger and doesn't know that she should eat more at once than she did before. It's pretty clear that she still thinks of anything above 34 cc as a bonus. We also have no idea how long she should go between bottles or how much we should expect her to take at once. We'd take our cues from her, but she hasn't worked out her own cues. It's an interesting project anyway.

Speaking of interesting, the fun never really stops around here. Last night around 10, I was getting ready for bed (yeah, we're real party animals) and Ben was changing Blaise's diaper. All of a sudden, he started yelling for me. I ran into Blaise's room, where I found both of them very upset and formula gushing out of the hole in Blaise's belly, the one that usually contains her tube/button. We slapped gauze over the hole. Her tube had caught on something and tugged out, with the balloon that usually holds it in place still inflated. I deflated the balloon, re-inserted the button and inflated the balloon again. Lots of tears from all three of us and a couple of panicked phone calls to Children's (to find out if we needed to come in) and to Andrew (to give us a ride in case we needed to go to Children's) and we settled down. It sounds like a much bigger deal than it is. The g-tube site is healed up all around like a piercing, so you can just stick the tube back in, but we'd never done it before and I'd only seen it done once. It was much more an emotional crisis than a medical one, but I don't recommend it as an experience.

By this morning, though, we were back to our usual calm.

Saturday, July 11, 2009

Some dreams come true

The other night, Ben had a dream in which Joe Biden showed up at our house with a huge pile of scratch-off lottery tickets, said, "Hope you got a couple of nickels!" and proceeded to sit, with Ben, in our living room merrily scratching away. At the end of it, they had won a pretty big sum and Biden got up and said "That's all for you, kids!" And then he left.

Blaise dreams about being allowed to drink all the milk she wants.

I'll let you guess whose dream came true yesterday. (Hint: We're not up $20k and we've never met the VP.)

It's kind of funny and a little sad because you can tell she doesn't quite believe it. Blaise clings to her bigger bottles while she eats and would probably take more if we weren't worried about her gorging herself and then throwing up. Not quite six months ago, we were sticking an empty bottle nipple in her mouth and dribbling 3 cc of milk into it. Her first bottle this morning was 75 cc. I'm beginning to feel like a broken record here, but we really never dared to dream that she would come this far and especially not this fast. At this point, I've given up guessing where she'll end up. She always exceeds my expectations.

Thursday, July 9, 2009

First clinic visit

Blaise had her first CAIR (Center for Advanced Intestinal Rehabilitation) clinic visit today. The clinic model is that we show up and have a quick blitz of visits with her various doctors and then we decide what changes, if any, to make. It's a check-in and an update kind of thing. I was only half joking in my last post about not getting readmitted. I couldn't think of any reason they would, but you never know. Fortunately, Blaise has worked out that we can go visit our friends at Children's and not stay overnight. We are home and she is sleeping nicely.

The overall vibe is that they're very pleased with how she's doing. She's gained more weight and is up to 11 lbs, 1 oz (5.035 kg). She's clearly thriving on feeds alone, which everyone is happy about. We've been impressed with how well she's been doing, so we weren't really surprised that they were, too. The part we really weren't expecting was the updated plan. We thought we'd stay on the same schedule and just bump up her volume a little. Um...

Blaise will now only be on tube feeds 12 hours overnight. The rest of the time, she can have as much as she wants by mouth whenever she wants it. As Ben put it, they're prescribing 12 hours of normal. (Although to help with the bleeding, they also prescribed steroid enemas every other day, so normal is a relative thing.) The idea is to get her used to the cycle of hunger and eating like a normal kid. Blaise has never had to demand food. She's either tube-fed or bottle-fed on a schedule. When she has been hungry, it's because we've had to stop feeding her entirely. We're sure she'll learn how to request food pretty quickly, but we're taking it slowly in terms of how much she gets at a time. Just because the doctors are allowing 3 or 4 ounces at a go doesn't mean we're going to jump straight there.

They also replaced her g-tube with a g-button. The difference is that the button lies flat against her skin while the other has about 6 inches of tubing that hangs off even when she's not attached to the pump. So when she's not being fed through it, you won't even be able to tell that the tube is there and she won't have a nice length of tubing to tug on. Today, for the first time, I held her with nothing hanging off of her at all. Not just untethered; properly cordless. Tomorrow, she'll be that way for 12 hours. How awesome is that?

Wednesday, July 8, 2009

A word or two from Herself

About six months ago, we posted a video called Blaise Speaks, in which a very recently extubated Blaise made her opinions known. It's still one of my favorite videos of her and can be found here.

But these days, Blaise is working on her conversation skills and I asked her to describe her day for your listening pleasure.

Still no English consonants, but lots of raspberries and some lovely open vowels.

Our first CAIR clinic visit is tomorrow. Goals include finding out what our next steps are and not getting admitted to the hospital. (Our track record on that second one isn't great so far.) Wish us luck!

Monday, July 6, 2009

Holiday weekend

Before I say anything else, it's time to congratulate all the people we know who have gotten married lately! Mathieu and Julie (parents to La Petite Erin) were married on Saturday just outside of Paris and Meg and Rupinder were married the same day near Toronto. We were so sorry we couldn't make it to either ceremony, but congratulations to both couples! Missing their weddings meant, however, that we were able to see our friend Jeff and his new wife Louise (also a former Kansas Citian) while they were in Boston this weekend and congratulate them on their recent wedding. The last wedding we actually made it to was just before Blaise came home, but we failed to mention it here, so a very tardy blog-congratulations to Dan and Masha. I'd feel more guilty about that last one, but we were able to congratulate them in person at their lovely and very fun wedding.

The sun came out Saturday for the first time in about two weeks. It has stayed beautiful outside ever since. We didn't take advantage of the weather to get to the fireworks because that would have kept us out well past Blaise's bedtime, but we did have a cookout with friends. Otherwise, it was a pretty low-key weekend and we took advantage of the down-time to get some work done.

Blaise seems to have hit a big developmental burst over the last week or so. She's talking like crazy (but, as the Talking Heads would put it, not saying anything). She's so close to sitting unsupported. She actually will sit without assistance for about 4 seconds before she tips over, but that process is more about balancing her just so. It's possible I've just gotten better at making her sit than she has at sitting. She's also begun reaching for everything and really stretching to get at things that are out of her reach. Cats beware!

Friday, July 3, 2009

Visitors galore

Blaise has had quite a parade of visitors this week. Grandma Janet and Grandpa Barry were here from Pittsburgh on Monday, "Aunt" Kate and "Uncle" Andrew came over last night, her buddy Auden and his mom Adrienne visited this morning and the evening brought dinner with "Uncle" Chris, "Aunt" Aurora and their son Max (to whom Blaise owes most of her wardrobe). Blaise loves visitors!

The visit to our regular pediatrician yesterday was a bit of an adventure. We don't have a car, but the doctor's office is only a 15 minute walk from our house, so it's usually no big deal. But yesterday morning we were having an impossibly torrential downpour, so an emergency Zipcar rental was in order. (Note to Thor: Enough already. Can we please have one sunny day?) Then we had to wedge the carseat in the back of a MiniCooper and find the windshield defroster. Once we got there, though, it was a good visit. That whole not-having-most-of-her-gut thing aside, Blaise is a very healthy baby. Six month vaccines are done, weight is up (10 lbs, 14.5 oz.) and everything else looks good. I have to say that our regular pediatrician is great: super smart, friendly and fantastic with babies. We had to deal with some post-vaccine crankiness today but it's better than actually dealing with pertussis someday.

Wednesday, July 1, 2009

6 months of Blaise!

That's of today, Blaise has been with us for 6 months. I can't decide if it feels like less time or more time than that, which I guess means it probably feels about right on. Periodically, I can't help but go back and look at some of the pictures and movies we have from her first few days and today it really just blew my mind. But don't take my word for it:

Blaise, circa January 5th or so.

Blaise yesterday

Awesome. There's roughly three times as much Blaise in the second picture as there is in the first, kidding. In fact, she grew almost half a pound in the past week. Besides that, she's been doing a lot of fun stuff lately: We've had some good progress on tummy time (including a hint of trying to change her heading), a good bit more conversation, and a newly-renewed love for her friend Atka the polar bear. It's hard to articulate I guess, but we both feel like she suddenly seems to have taken a bit of a leap developmentally. Her behavior seems more organized, she goes after stuff she wants more directly, and manages to execute plans a little bit more effectively. Of course, by "plans" I still mean things like "Grab Dad's glasses and eat them."

We also had a lot of fun hanging out with Blaise's Grandma and Grandpa Balas over the weekend. This was the first time they've visited since we left 10East and it rocked to have a visit that didn't involve parking passes, visitor badges, or the CHB Cafeteria. We all went out for lunch in Davis Square, read a lot of books, had brunch together, and overall just had a great time playing with a great baby. Blaise is now also equipped with a big box of Duplo blocks for building stuff with Mom & Dad, which Erin and I are both looking forward to a great deal.

So what does the next six months hold? Well, tomorrow holds a 6-month check-up at our pediatrician, complete with booster shots. That aside however, I imagine the next half-year will be wicked fun. Unless you're one of our which case, I imagine it will only get more dangerous from here.

Happy Half-Birthday, Blaise!