Monday, July 5, 2010

Day 133

Another day, another destiny. (Yep, it's another name that...!) Not really another destiny, but lots of opinions swirling around.

Last night, I placed her new n-g tube for the first time. It was traumatic for both of us, not even kidding. Three nurses had to hold her down while I stuck the tube up her nose and then down her esophagus. If I had to, I could do it again, but, wow, I felt like I was torturing her. That experience kind of tipped me over the edge regarding the surgery. It sounds odd, but surgery would actually be easier for her than having us pin her down and torment her all the time. Save the torment for middle school, right? To be fair, though, we shouldn't have to do it very often. If she leaves it in place and it doesn't get dirty, we'd only have to replace the tube about every 3 weeks, but chances are we'd have to do it earlier. I also am pretty sure that we took a few steps back in the work we've done with her oral aversion by my literally forcing something up her nose. That can't be good. The benefit to the n-g tube is that it would buy us some time to see if she keeps the growth up and if she will need tube feeds more long-term (more than a couple of months).

This morning her weight was down a little, but that wasn't surprising. We're still up 155 grams net (nearly 5.5 ounces). We did decide to offer her Pediasure during the day in her sippy cup instead of her usual Boost, just in case shaking things up some increased her intake, and she did willingly (maybe not eagerly, but getting there?) drink 6 ounces of it from lunchtime on. Add that to the 13 ounces of Peptagen she got in her tube overnight, and we're at 19 ounces of formula, which ought to be enough to make her brilliant. I think John and I realized today that our goal isn't really pure weight gain - she's got plenty of time in her life to pudge up and make the Wii Fit board squeak, "That's obese!" (not that I've ever heard that or anything...). The lack of weight gain is indicative of a lack of nutrition, which her little (okay, huge) brain and body need to develop. Remember the whole deal about eating a good breakfast the day of TCAP's? Yeah, nutrition really does help your brain. Elementary, I know, but in our food-disordered society, I think it's easy to forget.

I was mean and woke John up early so that he could get here for rounds (remember, the only time you can get an attending or a fellow even) so that he could ask all his questions personally, which I think turned out to be a good idea.

We also saw an endocrinologist today, and she's going to run one more test tomorrow, looking at Becca's growth hormone levels. She (Dr. Najar?) explained Becca's IUGR in a new way. She said that, yes, it was due to the placental insufficiency, but that it was really a protective measure because these teeny babies know not to grow bigger than their nutritional "house" can support. So even in the womb, they learn not to respond to growth hormones normally, a pattern which continues as they grow up. Given her size at birth and her size now, Dr. Najar guesses that Becca will probably naturally grow to be about 4'6" or 4'7". Now, that's all a guess (an incredibly educated one, of course!), but wow. That's small. With growth hormone therapy, we could probably bump her up to close to 5'. We'll talk about this more with our regular endocrinologist (Dr. Lomenick) at our appointment next month, but it was really interesting to hear her perspective. The relevance to today's questions is that giving her tube feeds and "optimizing her nutrition," as they like to call it around here, is not going to make her taller, though good nutrition is necessary in order for her to reach her full height potential.

So add that test to the list of things to get done tomorrow, and I'm starting to doubt we'll be discharged before midnight. If we decide to do the surgery, they are going to try to get us in on Wednesday, so we'd stay the night again on Tuesday, Wednesday, and possibly Thursday, but if we decide to go home on the n-g tube, there are still shooting for discharge tomorrow (after the visit with the GI nurse, the gastric-emptying test, a conversation with our regular GI, the growth hormone test (which is probably just a blood draw), a "curbside consult" with cardiology (not an official consult - just a call or something to see if they have any thoughts about cardiac issues that might be eating up extra calories), and the normal (forever-long) hospital discharge process). At least we don't have an hour to drive home afterwards.

Two things I've learned this weekend: 1) the 4th of July weekend is perhaps the worst time to be in a teaching hospital with all the transitions but barely any availability, not just of experienced specialists, but of lab techs, nuclear medicine folks, therapists, and everyone else that messes with you the rest of the week; and 2) it's a great time to be in the hospital because the nurses have fewer patients and your friends have time to visit! We got to see even more friends today, including Aunt Lauren, the Kelley family (all dolled up for Granna's birthday party - Kate was ADORABLE, and her parents were looking pretty swank as well!), and Miss Caroline, who is now officially allowed to be our friend since she is no longer our feeding therapist. Hooray for professional boundaries and hooray for not having to have them anymore! (I mean, not that I ever filtered that much anyway, but you know...) :) The visits really made a frustrating day go faster, so thanks, guys! I think they also help Becca remember that not everyone who comes through the door is going to poke her or make her mommy and daddy talk all serious-like.

I love the excuse to see friends, but here's hoping they can come visit us at home soon, with the difficult decisions behind us and a fun, relaxed summer ahead of us.


  1. Good luck with all of your decisions. Dr. Najjar is awesome! I am glad things are getting better with seeing your doctors and getting the answers you need. I will pray that you will find peace in your decisions and the path you choose.

  2. I hope everything goes well today and you receive some answers to this mystery! Becca is awesome!

  3. I love the official walking! I will be sure to pass on the great achievement to Jane. Congrats Becca, you did it!!! So cute! Will continue to pray for you all.