The second cutest baby I know

Just the thing to make this whole enforced tummy time business a little easier. We should be careful, though. Once Blaise's Aunt Libby discovered mirrors, it was all over.

Busy girl

On Monday, I took Blaise in to the lab at Harvard for her first study. This one used Near-infrared Spectroscopy (NIRS) to measure changes in the amount of oxygen in the blood in her brain, in response to different numbers of dots on a screen. They didn't have a camera and I left mine at home, so there are no pictures of her in the nifty NIRS hat. She also didn't do so well in the study, mostly because she wanted to look at everything except the dots on the screen. Still, worth a try and we got an official Harvard Laboratory for Developmental Studies bib, which Blaise spit up all over on the way home.

We also talked with her GI doc on Monday about the results of her colonoscopy and upper GI scope. The upper GI stuff is all fine, so that's good. The biopsies they took of the irritated tissue in her rectum and lower colon show what is likely an allergic response. Allergy to what we don't know. The blood is still showing up in spite of the change in her formula, but that may resolve with a little time. If not, we hope to treat it topically with cortisone. She doesn't get hives or have difficulty breathing or any of the other common systemic allergic responses, so hopefully we're not lookng at a major allergy. This is still all a very minor issue, but no one is crazy about blood in diapers.

Then yesterday Blaise had her assessment with Cambridge Early Intervention. This is a program that works with kids who are at risk for developmental delays to give them a shot at overcoming those risks. Blaise qualifies both for being premature and for having an extensive hospital stay. If we're being honest, Ben and I were really hoping that the assessment would tell us that she was developmentally on target in spite of being nearly 2 months early and spending almost 5 months in the hospital. The therapist seemed pleased with what Blaise is able to do, but she is behind in some gross motor skills and oral/vocal communication. No one seems to think any of these issues will fail to resolve with therapy and we're setting up a plan to address them. Unfortunately for Blaise, this will mean more tummy time.

Problem? Solution!

Well, Blaise has solved a problem. Not, unfortunately, the blood in the diaper one, which stopped for a while and then started up again. No, she's solved tummy time. As we've mentioned, Blaise hates tummy time and becomes particularly enraged when she rolls onto her belly in her sleep. Yesterday evening, when we were trying to see if our friend Kate was interesting enough to get her through a little tummy time, Blaise just solved the problem and rolled onto her back. She did it again and again this morning.

This is a big milestone and all, but we're supposed to keep enforcing tummy time. It's become an exercise in how many times we'll try rolling Blaise back onto her belly so she can go right onto her back again. Is she pleased with herself? You be the judge:

Sing it!

We sing to Blaise all the time. I'm going to get as much singing in as I can before she realizes that I sound like an angry cat. We've had singing diaper changes, singing g-tube cares and, when she was in the hospital, the occasional singing line change. Her taste is eclectic, with favorites including the Mercedes Benz Song, Molly Malone, Plastic Jesus, The Elephant Song and whatever random words we make up to the Toreador song from Carmen.


We've only recently discovered that she likes music even better. Not surprisingly, really, as her Uncle Chris is a musician/music teacher and her Grandpa Barry and Gran both sing. On the way home from the hospital last week, she was dancing very enthusiastically to Rodeo on the radio and since we've been home, we've been playing more and more CDs for her. I've been singing along with the Beatles for almost half an hour and she's still laughing like crazy. Then again, maybe she's just laughing at how off-key I am.

So far so good

Blaise has done pretty well the last few days. No more blood as of yet, but she's been a little gassy, possibly because of the formula change. She had gas issues when we switched her from breastmilk to Neocate, so I'm not really surprised that she's having similar problems with another diet change. Otherwise, she's doing well and we've had no further visits from the gnomes who flip babies over while they sleep. She loves riding in the car, as you can see.


She's working on visually-guided grasping of smaller objects, which is totally age appropriate and should be fun. But there are too many smaller objects we don't want her grasping. It was frustrating when she was trying to grab the q-tips we use to clean her g-tube site. Her very focused attempts to pull out her temporary IV this week, though, were a bit much.

New photos are up!

And we're back

We got home from the hospital early this afternoon. Everything was fine overnight and Blaise is tolerating her new formula well so far. Her nurse this morning shooed us out the door as soon as we got there. Everyone seemed to think it was a little unnecessary for us to have been readmitted, but policy is policy.

Blaise is doing so well that she was able to come with me this afternoon to a lab cookout. She hadn't met anyone from my lab before, so meeting all of them at once must have been quite the experience. The thing about doing development research is that everyone I work with likes babies and Blaise managed to be appropriately charming. We'll be going back next week so she can participate in her first study. I thought being a preemie disqualified her from all of the infant studies, but I guess not. Should be fun.

Scopes

Blaise had two scopes today, an upper endoscopy (esophagus, stomach and duodenum) and a colonoscopy (colon and lower small bowel). I will refrain from posting the pictures they gave us, but this means that Ben and I have now seen all parts of Blaise's gut in one way or another: photos from today and the lovely view of her jejunum we had when she had her ostomy. Only so many parents can make that claim.

The news is this: she has definite mild to moderate irritation of her rectum, sigmoid colon and descending colon. Everything else looks good. We are waiting for biopsy results to figure out why she has this irritation, but now we know where the blood in her stool is probably coming from. This irritation is causing blood, but so far, it doesn't seem to be causing pain or discomfort. Hopefully we can find a good way to treat it.

Blaise did great throughout the procedure and, after spitting out the Pedialyte they tried to give her right away, is back on full formula feeds. I don't blame her on the Pedialyte; that stuff is gross. The annoying news is that she's staying the night at Children's again. We were sure this was going to be an outpatient procedure until we got there today and the anesthesiologist asked us how old she was and calculated her gestational age. If kids go under general anesthesia and are less than 60 weeks gestational age, they have to stay the night for observation. Blaise is 57 weeks gestational (17 weeks past her due date). So she's back with our friends tonight, on monitors, but should be discharged first thing tomorrow.

Memo

From: Blaise
To: Unknown
Re: Nasty tricks

To whoever turns me over in the middle of the night,
I keep falling asleep on my back and waking up on my tummy. (See evidence below.) This makes me very angry. My mom says this happens because I roll over, but that doesn't make any sense. Why would I roll over when I hate being on my tummy? Please stop with the tricks and let me sleep on my back.

Thank you.

Blaise

Home again, home again...

After a relatively quick discharge from 10 East, as of this afternoon we're back home, with a sleepy (for now) baby catching some well-earned Z's in her crib.

The detective work Erin alluded to in her last post unfortunately didn't leave us with a firm diagnosis to explain the blood we've been seeing over the past week. We can pretty confidently rule out infection (all of her cultures came back negative and they ran pretty much everything) and allergy would be a bit strange (it rarely presents like this and she's on the most hypoallergenic formula around), which leaves us with the possibility of an anastomotic ulcer, bacterial overgrowth, or a generic ulcer of some kind in her GI tract.

Let me unpack those a bit: An anastomotic ulcer is a sore that forms at the junction where intestines are reconnected (or re-anastomosed, to use the surgical term of art). These are "not well-understood" according to Blaise's GI doctor, but to my understanding the deal is that you can end up with a pocket of tissue near the reconnection point where bacteria can collect. If they do, you can end up with ulcerated tissue that may bleed intermittently. You can treat this with antibiotics, so long as there hasn't been extensive structural damage. Do we think Blaise has one of these? I kind of think not, and here's why...her "lowest" anastomotic juncture is about 30cm north of where her large intestine meets her small intestine. That means bleeding that starts there has to get all the way through those 30cm, then through her colon before we'd see it in a diaper. That much travel usually means you see blood that's (1) not bright red, and (2) mixed in with the rest of the diaper's content. We've been seeing exactly the opposite, which isn't impossible, but would require "brisk bleeding" and "rapid transit" through the bowel. We're not sure either of those things are fair descriptors of Blaise's GI profile, so we're a bit skeptical.

OK, so what about bacterial overgrowth? Some kids with short bowel end up with bacteria from the colon in their small intestine. It can proliferate, and lead to all sorts of nasty stuff. Bad breath (due to an excess of hydrogen), bloating (too much bacteria making too much gas), "dumping" or "stooling out" which is exactly what it sounds like, and yes...blood in the stool. here's the thing though: Blaise has an intact ileocecal valve (which is at the boundary between the large and small intestine) and that usually means overgrowth isn't so much of a problem. Moreover, she's got none of the other signs I mentioned above...just blood.

So what's left? Honestly, things get very nebulous here. Maybe she's got a weak capillary somewhere. Maybe there's a bit of tissue that's been moderately ulcerated for a while and with more volume just gets irritated that much more easily. At this point, it's hard to say. A member of Blaise's care team even told us that some kids just DO this, and they never really work out why. As long as it doesn't make them physiologically unstable (and Blaise's labs never budged from the normal range) sometimes the team just decides to live with it.

Weird.

So what are we going to do? For now, hang out at home, take it easy, and try not to worry about small spots of blood that we might see. We're keeping a close eye on her for any other issues, especially anything that signals dehydration, electrolyte imbalance, or considerable blood loss. She's also been scheduled for a colonoscopy on Tuesday at 2pm. To be honest, we'll have to see what happens with that...her surgeon seems less than thrilled at the idea of putting her under general anesthesia again if we continue to see mild, intermittent bleeding. Her GI doctor seems like he'd really like to figure this out (and so would we) but also agreed that it's less clear they'd see anything useful if she's not continuing to bleed. We're going to let them hash out what they think about doing the scope vs. sitting it out, especially since we remain a bit on the fence about it too. An answer (hopefully an easily treatable one) would be nice, but so would avoiding another procedure and a trip to the PACU. Hard to know what to hope for in some way. I think most of all I'd like something clear-cut to happen: Having the bleeding vanish would be awesome, but if it has to be here, I'd rather it just be persistent enough that we know we have to go track down the source. This whole "maybe it's significant, maybe it's not" thing is just killer. We've been fortunate up to now insofar as it's been obvious that the surgeries and procedures Blaise has had were necessary to improve her condition. This puts us in some unfortunately murky waters for the first time. Is it worth general anesthesia and a scope to lay eyes on what might ultimately be something as elusive as a weak blood vessel on the intestinal wall? If she has some moderate overgrowth, do we give her antibiotics to clear it out even though doing so makes it more likely she could have further problems? Basically, are we sure that the relevant cures are actually not worse than the disease?

For now, we're trying to just enjoy having her back here. We started with the trip home from the hospital. Blaise had a GREAT car ride home. Seriously...she laughed the whole way over the BU bridge and giggled a lot as we went up Mass. Ave. At home she embarked on a dedicated campaign to devour Erin's index finger, making some impressive growly noises as she nommed on Erin's knuckles with vigor. As far as the ongoing Battle of the Bottom, some small specks of blood, but not so bad. I think we may take our cues from her for the rest of the weekend. If Blaise seems happy and playful, I think we'll try not to worry so much. After that...well, we wait and see.

Second time around

We were officially readmitted at 1:45 this morning, after spending 6 hours in the ER waiting for someone who could place a peripheral IV and draw blood for labs.  Not really sure why that took 6 hours.  The ER was awful.  As much as we didn't want to be readmitted, getting back upstairs to nurses who know Blaise and us and short gut was a big relief.

Blaise spent the night off feeds and on IV replacement fluids.  This morning they started her on full feeding volume of Pedialyte and we're switching back to formula this afternoon.  We'll have her back on her home routine (but in the hospital) in a couple of hours and then we just wait for test results and for them to make a decision about what to do.  Her blood tests look fine so far, negative for infections and normal counts.  They're testing for C-diff and rotavirus (again), but we really don't think it's any of those things.  She was negative for all of those when she had blood before and I would be surprised by an entirely new cause of old symptoms.  We'll keep updating as the detective work progresses.

For her part, Blaise has mostly been sleeping, which makes sense given her very late night.  (Children's hospitals should have bassinets in the ER, not just gurneys.)  When she's awake, she's pretty much herself.  It's hard to worry too much about a baby who's laughing and playful when she's awake and nicely settled when she's asleep.  She tipped the scales at 10 lbs 8 oz this morning, which also makes it hard to be too concerned.  Good mood, good vitals, good weight gain.  Just one scary symptom.

Where everybody knows your name...

I guess I'll just come right out with it: We're back at Children's this evening and will probably be admitted back to 10East tonight. 

You may remember our earlier bout with spots of blood in Blaise's diaper from our inpatient stay. After about 40 hours off feeds, several clean X-rays and negative cultures for most infectious agents known to man, we ended up deciding that it all could just be skin breakdown from really nasty diaper rash. 

OK, so fast forward a bit...about a week ago, we saw that the spots of blood were back. We covered Blaise's ears, cursed a bit, and tried to be really diligent about taking care of her skin and changing diapers frequently. We intermittently saw specks for a day or two, called the hospital to check in, and were told that it was probably no big deal unless it increased in amount or changed in anyway. The specks came and went, then came back again. Specks became dots, dots became streaks, and this evening we changed a diaper that had still more blood in it. We called to talk with her surgeon, and he told us we should come in. So here we are in a room in the emergency ward, waiting to be seen by an ER doctor before (probably) getting re-admitted and transferred upstairs. 

That's the unfortunate part, such as it is. When we know more, we'll be sure to post and let y'all know. Everybody we've talked to over the past week seems confident that Blaise is probably ok, since she's shown no signs of fever, abdominal discomfort or distention, or even seemed terribly fussy about any of this. She's actually been a lot of fun lately...lots of smiles and laughs, and she even pulled off her first back-to-front roll earlier today! It's comforting that she seems alright when you hang out with her, but it also makes being readmitted hard. I didn't want to have to take her back here anytime soon. Everything at home is better...the blankets are softer, the lights aren't so harsh, and her room is filled with great stuff that's all just for her. Plus, now we know we can take care of her ourselves at home...trying to manage Blaise and work keeps us busy, but we've been having a great time. 

Nonetheless, here we are. It'll probably take way too long for us to actually get upstairs, but Erin's holding a sleeping Blaise as I write this and she seems none the worse for wear. I'll probably wallow in self-pity a little bit longer and then I'll go to the ABP and get a cup of coffee like all the other dads. We know we can get her out of here, it's just a question of what has to happen in the meantime.

Onward, damn it.

A Play Date!

Today the three of us went on a small adventure to see Blaise's friend Siri, who was born shortly after Blaise arrived to our friends Dave and Jarasa. They'd "met" before, but the quotes around that last verb are there because Blaise slept through both encounters. It's been a very pretty day in Boston so far (though the rain may be coming soon), so we got Blaise all dressed up in a very pretty sun dress that her Grandpa Tom got for her a little while ago.


Did I mention it was sunny today? Good thing for Blaise she has a comically large hat. This basically ensured that no sunlight could possibly get through to her entire upper torso.

After a nice walk up Highland Ave. in Somerville, we arrived at Dave and Jarasa's place, where they'd set up a nice sun shade for the little ones to hang out underneath and stay cool. As you'll see below, they seemed to get on famously. 

Aw. Hand-holding and everything. Actually, at one point in the afternoon Blaise got herself worked up into a bit of a crying fit and Siri actually just reached over and held her hand. Freakin' adorable is what that is. 

Not a whole lot else to say I guess, other than to reiterate that it's a ton of fun to be able to go do stuff like this. Hanging out with friends and watching our babies laugh at the same silly words is awesome. As always, we learned several important things from our first attempt at something new:

1) You will always need more cloth diapers than you think. 

2) Blaise will sleep in the car seat, especially under a very floppy hat.

3) Siri eats avocado like a baby possessed. Watching her "omnomnomnom" routine this afternoon was hilarious and has me thinking that the eventual move to solid food for Blaise could be great fun.

Time dilation

Our surgeon said something to us just before we left: "It's been a long six months." I responded, "It's only been five months." He said, "No, January 1, right? That's February, March... Oh, yeah, huh, five months." It was just the kind of five months that seemed like six, even to someone who is always in a hospital. It's been a short ten days. Time flies when you're having fun.

Just look how much fun we're having:

Blaise loves home so much that she's gaining weight much faster than she had been at the hospital, up nearly half a pound since we've been home. This morning she was 10 lbs, 5 oz, meaning that she now outweighs each of our cats.

How do the cats like Blaise? We exiled our younger cat to a friends' house for the first week of Blaise being home. The curious cat who likes strings and milk seemed like the wrong one to have around while we learned to juggle a baby with a milk-filled string attached to her. Our older cat has largely ignored Blaise; the younger one just wants to sniff all of her stuff. I think Blaise might be bringing them closer together, in an enemy of my enemy sort of way.

One week home

As of today, Blaise has been home for a week and I think we've all adjusted to the new situation. Our home nurse has checked in a couple of times and today we had our first visit to the pediatrician. You know, the regular one, whose office is 10 minutes from our house; he'd heard a lot about Blaise but never met her. The verdict is that we're all doing great. Photos of how great are here.

We're trying to get into the groove of "co-parenting." Blaise is not a candidate for group daycare, too high a risk of GI bugs and an unsurprising dearth of centers that are willing to take a kid with a g-tube. We can't afford a nanny, so Ben and I are trading off. I go to work in the morning and work from home in the afternoon and he works from home in the morning and then heads to lab in the afternoon. We had planned to take this first week home off and just find the home routine, but schedules at work were not so accomodating. It's a bit tiring, but it's also fun to both spend time with Blaise every day.

It's nice to feel normal(ish). After the appointment this afternoon, we went to the Au Bon Pain on the ground floor of our doctor's building. I gave Blaise her bottle while Ben ate a sandwich. It sounds really mundane, but it wasn't something we'd ever done before. Mundane is good. It's a bit of culture shock to go from the hospital, where everyone has tubes, to the real world, where most people have never seen a healthy baby with a tube. The little backpack for the enteral pump makes Blaise rather portable and I'm sure most people don't notice the line running from under her onesie to the basket under the stroller. Incidentally, she loves walks in the stroller, looking around and taking it all in. The world is such a big place!

Wonderfully busy

I guess a few people have been a little worried because we haven't posted since we've been home. Everything is going well, but we're really busy. In that having-the-baby-home-and-trying-to-figure-out-when-to-take-a-shower kind of way. No big scares or anything so far and Blaise's care schedule (meds, feedings, etc.) is helping us establish a routine. I have to say that the onset of teething could have been better timed, but we'll all survive.

This is the busy we expected and it's pretty great: visits from friends, 3 AM feedings, walks with the stroller, loads and loads of laundry. I promise a longer update and more pictures soon!