Thursday, May 28, 2009

Wednesday, May 27, 2009

The Thin Red Line

About an hour ago, the Nurse Practitioner on duty for 10East today removed the central line from Blaise's leg. It only took a few minutes, and Blaise didn't even have to leave her crib. She didn't even really fuss...she just made eyes at us the whole time and kicked her legs enough to make life slightly difficult for her nurses.

I can't believe it's gone.

I don't remember if we ever shared this number with all of you on the blog, but at our first family meeting we were told there was about a 1% chance Blaise would ever come off TPN. We were told she might never eat. We were told that line infections would be a constant source of worry. We fretted about the day she'd be old enough to pull it out herself or compromise it in the million unpredictable ways a two-year-old can come up with and that a parent can't hope to pre-empt. We learned how to take care of the line, both of us worried that someday we'd slip and Blaise would get sick.

If there's one thing I've learned from all this, it's that small probabilities are NOT equal to zero.

The line may come back someday. We're not done. Blaise needs to get bigger and stronger and that's going to take lots of effort and attention. Still, today feels a bit like victory.

I can't leave off without saying something about our nurses on 10East. The real victory as far as I'm concerned is that we went this long with a central line without an infection, a broken line, or any of the other issues that cause serious problems for kids on TPN. Unless you read lots of blogs about children with lines (which of course, we do...and maybe some of you do, too), it's hard to grasp how impressive that is. Trust us, it's pretty damn impressive. The care Blaise receives is unparalleled and the line that came out today is a testament to the dedication and skill of the many nurses who have worked hard to keep her safe and healthy.

Anyhow, it's a rainy day in Boston today, so now that the big event has come and gone I imagine some naps and some Dr. Seuss are probably in order. We'll post some before and after pictures soon.


Blaise has been off TPN since Saturday morning and everyone seems confident that it will stay that way. I realized yesterday when two different people made the same mistake that there's a little confusion in our terms. Blaise has two tubes at the moment: her g-tube, which is implanted in her stomach and that her milk feeds go through, and her PICC, the giant IV in her leg that her TPN and omegaven go through (a.k.a., "the line"). Or, more accurately, went through, since she's off the TPN and omegaven. We're hearing talk of removing the PICC today, so we may be down to one tube in the very near future.

When will the g-tube come out? Someday, but not anytime soon. She gets 2/3 of her feeds through this and 1/3 by bottle. She would love to get all of it by bottle, but that might be too much for her little gut to handle at once. Also, the continuous g-tube feeds are part of her long term intestinal rehab program. When we say that she's reached her goal, we just mean in terms of total volume. Blaise isn't cordless yet, but one tube is better than two (is better than a lot of other options).

We get the impression that many of Blaise's fans are more freaked out by the g-tube than by the PICC when, really, the PICC is much scarier to us. It's hard to maintain and poses huge risks for infection, clotting or clogging. An infection could lead to sepsis very quickly and a clot or clog would mean another surgery to replace the line. We couldn't be happier to hear that we're likely to lose it soon. The g-tube, on the other hand, is pretty easy to maintain and much more portable than the IV. So stop worrying; learn to love the g-tube.

Sunday, May 24, 2009

Weight check

Remember that thing we've said about all babies losing weight their first couple of days off PN? Blaise's weight was up (by a lot) this morning. It's almost certainly a fluke. Sometimes a big diaper just after or just before a weight check can have a big influence on her recorded weight. We'll see what happens tomorrow. One day at a time and all that.

There's a phrase that's been running through my head a lot lately. In 2004, the morning after the Red Sox beat the Yankees for the AL championship, Ben saw a man in the subway station, still drunk from the night before, who loudly proclaimed "Now all we have to do is win the World Series!" All the commuters on the escalator cheered. The vibe in Boston at the time was very much that: If the Sox could go from being down 3 games to the Yankees to winning the series, the World Series would be a piece of cake. The momentum of those 4 wins in a row would erase 86 years of losses. The Sox did go on to sweep the Cardinals, but that wasn't a forgone conclusion. It just felt like one to people who had watched their team lose to the Yankees in the ALCS so many times.

I kind of feel that way about reaching goal feeds and the possibility of coming off PN (yes, I'm still saying possibility). It's something that seemed so impossible and far away once that the other big things seem like they could be easy. Blaise is tolerating her goal feeds. Now all she has to do is gain weight. You know, that's all.

Saturday, May 23, 2009


This morning, Blaise bumped up to 32cc/hr of formula. That's a new high-water mark for her and it's also the last number we heard bandied about as her "goal" amount for feeding. Chances are that she's grown a bit since then, so 33 or 34 might be the "real" number we'll aim for, but the big deal is this: Blaise won't be on PN tonight. No Omegaven, no IV nutrition. Just formula and milk.

When her nurse for today told us that this was the plan, I was dumb enough to ask when that would happen. See, the thing is, it already has. Blaise has been coming off the IV for 12 hours at a go for a few days now and all that happens tonight is that they don't hook her back up. It just seemed like such a big deal that I guess I felt like there had to be some moment when we'd actually do something. Personally, I think we should have a big mad-scientist switch that just says "ON" and "OFF." Like one of these guys:

Admit it, that would be pretty cool. Anyway, even though there's no big moment when we turn off the IV this is still a big day. We're giving Blaise her first shot at growing without using the central line for nutrition. The plan right now is to see if she can keep gaining weight when it's up to her intestines to do all the work. How long do we wait? Kinda hard to say...our nutritionist tells us most kids lose weight the first day or two. She also tells us that surgeons always freak out about this even though nutritionists always tell them to expect it. We're expecting her surgeon to freak out in, oh...let's say 20 hours or so. After that first day or so though, we may see Blaise put on a few grams (~30g would be nice) which would be good evidence that she can come off PN.

Neither one of us is putting all our hopes on this all working out the first time. We're willing to take home a line. Honestly, it's a bit amazing to me that we're even talking about the possibility of removing it. Erin and I have talked a lot about how radically goal posts have been shifted over the past 5 months and I guess it's still hard for me to believe this last one stands where it does. Regardless of what happens it's great that we can try.

So we wait on pins and needles here on 10East. Of course, we also have a lot of fun. :)

Note that Blaise is really into chewing on her fingers lately (as well as chewing on her pacifier, her friend Atka the polar bear, us, etc.). She's also been a little extra drooly and occasionally fussier than normal. What could cause all those things? Possibly the same thing that's causing a bit of a swollen bump on her lower gum.

Yup. A tooth.

Early for a tooth, you say? Yes, but not for a baby on Omegaven! Turns out that it's not uncommon for Omegaven babies to get their first teeth early. Omega-3's promote growth and so Blaise may have some choppers to work with before too long. The fish oil is really something else, folks. I hold out hope that she may end up being telepathic and/or have X-ray vision. Now that I write that, I realize both of those traits would be awesome, but pose serious parenting challenges. Hm.

Thursday, May 21, 2009


Sorry it's been a while since the last update, but things have been pretty steady on. Blaise's feeds are now at 29 mL/hour and her PN has been decreased to the lowest point it will hit before it is turned off all together. If she handles 29 okay, she'll go up to 32, which is our current goal, over the weekend and the PN will come off. The diaper rash situation is slowly coming under control. We're trying not to get too excited.

But, blah, blah, medical, feeds, PN. I have (finally) updated the photo site. New galleries are:

May, where I've put all of the random photos from the last month

Blaise and the Atom, in which Blaise makes her first forays into scientific exploration

We're still working on getting video of baby laughs. She didn't like the (in)famous e^x and a constant joke, but she thinks reduplicated babbling (me going "babababababa") is hilarious. I don't understand why because the e^x joke usually kills. Maybe she'll think it's funnier once she's learned some multivariable calculus.

Saturday, May 16, 2009

Diaper rash

Our semi-official diagnosis is that Blaise has the world's worst case of diaper rash. So bad it could be confused with NEC. We knew she was going above and beyond on all fronts, but we really could have been spared on this one.

We talked with the surgeon yesterday afternoon and the current plan is to not worry about the blood unless we start to see a lot more of it or Blaise starts to have other symptoms. We're treating the diaper rash and hoping the blood will go away as things heal. We also have his blessing on going home by the end of the month, with or without the IV. We should know by the end of next week whether Blaise will tolerate her goal volume. She's at 23 mL/hour now and we're aiming for 32 (but that's a moving target). The furniture in her room at home is assembled and we're working on getting sheets and diapers washed and ready.

Thursday, May 14, 2009

Longer story

Here is the short version of what happened: We turned off Blaise's feeds last Wednesday night and put them on at 10 mL/hour Friday morning. Then she went to 15 mL/hour on Sunday, 20 mL/hour on Monday and 22 mL/hour on Tuesday, with a plan to hold at 22 for a few days before bumping to 25. Late afternoon yesterday (blogger mis-dated the blog post; it was Wednesday), I changed another diaper with blood in it. Feeds off for 4 hours and now we're back at 20 mL/hour.

Of course, there's more to it than that. On Saturday morning, I told her care team that I thought the feeding increase schedule (which wasn't going to get her up to 20 until today) was way too conservative given that nothing actually seemed to be wrong. They all nodded and said they had to check with her surgeon, but that we might be able to pursue a more aggressive increase plan. Then we didn't hear anything. Sunday morning, I asked the care team what the plan was. It turns out that our surgeon was out of contact for the day because he was on a flight to Hong Kong, but he had given the fellow and the attending on call free rein to change Blaise's feeding plan. We went up to 15 and she had no problem. We went to 20 on Monday and she had no problems. She was at 22 for over 24 hours with no issue and then the blood. They turned off her feeds for 4 hours, during which we got to go for more x-rays, and then went back to feeding at 20 mL/hour. She had no visible blood overnight or this morning. I saw the tiniest possible trace early this afternoon.

Here's the thing: Blood in stool can come from a lot of places, anywhere between the nose and the anus. The darker and more mixed in it is, the farther up it's likely to be from. This blood is bright red and separate from the stool, which means it's probably coming from somewhere pretty far downstream. Blaise has a couple of fissures near her anus and a bit of broken skin on her bottom from the very fierce case of diaper rash that we were told to expect. I'm beginning to suspect, and the nurse practitioner seems to agree, that this might not be a bowel problem at all, but a skin-level irritation issue. Of course actually diagnosing it as such is likely to be a huge pain. No one likes to see blood and it can be a sign of such worrisome things that every time we see it, we'll have to eliminate them. No word yet on how this affects plans for home. We're planning for the end of the month, with or without the IV.

What does Blaise think of all of this? She hates having her feeds turned off, but otherwise, she's not sure what all the fuss is about. She laughed out loud for the first time this weekend (at her Grandpa Tom) and has given us a few more giggles in the last couple of days. She's also been very playful and energetic, so she's keeping the mood light for us. Blaise makes all of this easy.

Tuesday, May 12, 2009

Here we go again

I was about to post that we had the feeding situation worked out and that the bleeding thing had resolved. Then I changed another diaper with blood in it. Damn it.

We have, as before, no idea what is causing this, but we're back in the process of ruling out all the scary stuff before we conclude that it's just irritation due to increased feeding/stool volume.

Meanwhile, here is a picture of a cute baby, who is being charming and happy through all of this.

Sunday, May 10, 2009

Blaise's other moms

It's Mothers Day. This is one of those holidays I can never remember (Sorry, Mom!) and one I never intended to encourage my own children to celebrate. I only know it is Mothers Day because other people keep wishing me a happy one and because the nurses are trying to coach the two-year-old across the hall to say "Happy Mothers Day" when his mom gets here.

The mantra among the nurses here, from the very start, was "You're her mom. You know her best and she knows you." I never thought that point was up for discussion, but Blaise has an army of secondary moms. Her surgeon calls them her babysitters, but I never engaged with kids I babysat the way the nurses engage with Blaise. I would think that the job would be easier if they were detached; no one wants to draw blood from someone they care about. Instead, they open their hearts to their long-term patients and love them like their own while still respecting my status as Mom. Happy Mothers Day, Blaise's other moms! Thank you for everything you do for her every day.

And to all moms: those with perfectly healthy kids, those who know their children's bilirubin levels and bowel lengths, those whose kids are fighting for their lives and those who have lost children. Happy Mothers Day!

Saturday, May 9, 2009

Names, names, names

The Social Security Administration has released the name counts for 2008. Blaise was born in 2009, but unless her name takes a precipitous leap in popularity, I think she's safe from being Blaise B. for all of elementary school. It didn't make the top 1000 names for either sex. As one of 4 Erins in my kindergarten, I was hoping to avoid a really common name for our child. Still, I'm not sure what to think when a year produces 327 Shyanns and fewer than 200 Blaises.

Of course, when I was about 4, I decided that I wanted to change my name to Jennifer, which was even more popular the year I was born than Erin was. So I'm anticipating a future conversation with Blaise in which she announces that she is changing her name to Emma.

Friday, May 8, 2009

Not May 15th

Blaise is officially NOT coming home on May 15th. We have no idea what our next best estimate for coming home is, but the blood in the diaper incident has seriously set Blaise back on her feeds and the PN reduction. She is back at 10 mL/hour for milk and 20 hours of PN a day. It will likely be more than a week to get back to where she was on Wednesday and probably another week after that to get to goal levels of feeding. So, barring further setbacks, we're looking at another two and a half weeks or so. The good news is that her labs still look good and the xrays have all come back perfect, so this isn't likely to be perforation of the bowel, necretizing enterocolitis, a line infection or a major GI bug. It was probably just some kind of irritation.

The really frustrating thing about this is that we're having a hard time gauging the response of Blaise's team. On the one hand, her surgeon thinks the situation is serious enough to have stopped feeds for 40 hours and to order very slow feeding increases. On the other hand, they didn't seem to think it was bad enough to send anyone to talk with us about it until we asked last night and, even then, they sent us this idiot of a junior resident who had never met Blaise and had no idea what was going on. The nursing staff and the GI doc all seem to think this slow increase schedule is a complete overreaction, but the surgeon has the final word.

We're hoping an uneventful weekend will give us fodder to argue for a less conservative increase schedule. We don't want to push Blaise too hard, but it seems silly to go at a snail's pace through volumes we know she can handle, especially since she seems quite healthy and we've ruled out the big scary things.

Thursday, May 7, 2009


So we've hit a bit of a roadblock. It has to do with stool (as usual), so for those of you who don't want to hear about it, here's a picture of a cute baby.

I was changing Blaise's diaper after her nap yesterday afternoon and what do I see mixed in with her poop? Stringy bits of blood colored mucus. So I called the nurse who called the nurse practitioner who called the resident who stopped Blaise's feeds and ordered a million tests. Two x-rays, two blood cultures, two stool cultures, one urine culture, and two complete blood counts later and, apparently, nothing's wrong. She's acting totally normal and has no symptoms of anything. Her belly is soft and not tender. My guess is just that the feeding increases went a bit fast and the increase in stool irritated the lining of her gut, but we have to rule out all sorts of scary things first (like a structural problem with her bowel). It looks like we're in the clear on anything big, though.

Unfortunately, this means that they've stopped her feeds and aren't planning to start them again until tomorrow morning at the earliest. She's really angry about not being fed for 30+ hours, but we weren't able to convince them to start even minimal feeding. We're guessing that this also means that the original plan of stopping her IV nutrition on Saturday has been scrapped. No idea yet what the plan is for restarting feeds and increases. Needless to say, it's very frustrating to be so close to her feeding goal and then take a giant step backward.

Tuesday, May 5, 2009


Blaise isn't great at taking her afternoon nap. And I don't blame her. Right now, our roommate is watching The Incredibles with the volume up as high as it goes, two people are having a very loud conversation in Spanish just outside our door, a three year old patient is shrieking in the playroom and alarms are beeping everywhere.

Oh, wait, she's taking the best nap she's had in weeks, much better than the ones she took in our private room away from all the noise with the door closed. Help me out?

On the medical front, she's at 25 mL/hour on her feeds and doing well so far. Her weight is up to 4.090 kg or 8.998 lbs. We'll call it an even 9 lbs. Everyone keeps talking like we'll be going home on the 15th without an IV, just the g-tube. Dr. Puder says I should start taking fish oil to keep Blaise in omega-3s once she's off Omegaven. We're still not holding our breath for it, but it would be great to add IV care to my list of useless medical skills (see also: replacing an ostomy bag on a squirming 2 month old and sticking cardiac monitors on a preemie).

Monday, May 4, 2009

May 15th

With apologies to David Letterman:

Top 10 Reasons Blaise Might Not Go Home on May 15th

1) She might get a line infection
2) She could fail to gain weight once she's off PN
3) She could catch a cold/GI bug and need to recover a bit
4) She may have difficulty tolerating more volume/more calories
5) A meteor might hit our house
6) ...
7) Um.
8) This is harder than I thought.
9) Well, we might freak out because we don't have her room finished and demand more time.
10) And I guess the insurance company could potentially be weird about something.

So #1-4 are for real and I'm trying very hard to keep in mind that these are things that have happened to many families and could easily happen to us. I can't wait to have her home, but getting too invested in an actual date feels dangerous.

Still...May 15th. Crazy. Y'know what else? It's gradually become clear to me that her care team is very strongly assuming that they figure the plan is to go home without the central line. I still can't let myself get convinced that that's actually in the cards. Erin & I had our nurse today teach us how to do cap changes on the line so that we know what we're doing when and if we need to handle stuff like that. A bit intimidating to handle the open line like that, but now we know what we're doing. Having more bases covered just seems like a good plan and convinces my superstitious side (which prior to now had been pretty dormant for years) that we're somehow more likely not to go home with the IV since we've invested time in learning how to deal with it.

Furniture assembly continues (now with added gusto!). We put the wardrobe together last night and will soon put many tiny outfits in it. We're a crib away from a room we could actually put Blaise in! Pictures will follow once we get there...'til then, keep those fingers crossed everybody.

Sunday, May 3, 2009

"Steady progress"

We have two residents who we see regularly. One of them is very sweet with Blaise and the other is exceptionally awkward with people in general. They both said the same thing about her the last time we saw them, although one of them more awkwardly than the other. "She's making really steady progress." And we love to hear it. Slow and steady is much better than rapid and back-and-forth.

Blaise has cracked the 4 kilogram mark, weighing in at 4.055 kg (8.92 lbs) this morning. She's at 22 mL/hour on feeds and is only on the IV for 12 hours a day. This means she could be at full volume on feeds by Thursday and possibly off the IV completely within two weeks. We're hoping to keep this progress steady, too, but stalling out is still a very real possibility. We're just loving the untethered time and cruising the halls making friends with everyone we see. We've definitely been here too long. Nurses in other units say "Hi, Blaise!" as we pass through.

In other progress, we've assembled the dresser/changing table for Blaise's room and now it's time to tackle the wardrobe. We should also prewash the diapers, find crib sheets (not the kind I have to take away from students during exams), clean the house and do the million other things that we've been neglecting for 4 months. And try not to get too excited, so we won't be too disappointed if it doesn't work out.

Friday, May 1, 2009

The D-word

Yesterday, one of Blaise's nurses used the d-word. She said it so casually that I almost didn't catch it. "By the way, I've started things moving on your discharge process." This doesn't mean anything yet except that the nurse practitioner is writing prescriptions and starting to hash out home care issues with our insurance company. We don't have a date and we don't have an official plan, but wheels are turning. This is good because after 120 days (but who's counting?), our patience with the hospital life is starting to wear a little thin.

The blood culture from Blaise's line came back negative, so we remain line infection free for the moment. We got bumped from our private room because Blaise doesn't have anything contagious, but some other patient does. So we're back in a shared room, which is pretty cramped. We'll survive, though. Hopefully not too much longer before we have our whole apartment to hang out in with Blaise.