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Saturday, July 21, 2007

ICN Follow Up--the nine month update

I've been kind of hesitant to post. First, we have virtually no new pictures and, second, Hallie has yet another one of her colds. It's the latter that really has us down (and is probably the reason for the former). We finally made it ten whole days without an upper respiratory infection and, Tuesday, we were in the throes of a new one. I know that we should be thankful that her lungs, as usual, sound clear and that it's not worse than it is, but honestly, when, precisely, do we catch a break around here? On Monday, we visited Hallie's accupressure/cranio-sacral specialist who has been doing massages to help her with her swallowing. I am not sure that this really will improve her swallowing, but am fairly certain that it helped delay the onset of her latest URI. Hallie sounded pretty clear and ate pretty well on Monday. She even went so far as to fool the unsuspecting potential childcare provider/nanny (since when did everyone become a nanny? I remember just babysitting) into believing that she was an easy to feed/easy to change baby. Needless to say, everyone out there who might take on this Tuesday or Thursday all-day position is forewarned that our princess can do a backflip on the changing table (maybe a triple axle? do they rate babies and not just olympic skaters for these antics?)

Tuesday, however, was another story. We were back to Hunger-Strike Hallie, who was super congested.

Wednesday was even worse. We were scheduled for her 9 month follow up at the ICN and, since she was not running a fever, we decided to keep that appointment. At least it would give us the opportunity to bounce some ideas off of the very wonderful neonatologist who handles developmental follow up.

In any event, with a bit of coaxing, Hallie did everything that (I think) she was supposed to do. This is a relief but not all that surprising. She does seem to us (untrained mommy types) to be right on target in terms of her gross motor skills, and pretty good (in that she has a rudimentary pincer grasp and the capacity to bang blocks together and the like) in terms of her fine motor skills. Her language skills seem to us to be lagging but, that said, over the past few weeks she has been vocalizing a whole lot more and doing some imitation and tonal vocal sounds. We do have some hope that at some point she'll begin to vocalize consonants.

The aforementioned excellent neonatologist said that it has only been recently that the field has been paying any attention to delayed language skills and that, surprise surprise, they are finding that this is more the rule than the exception where micropreemies are concerned. Certainly a large majority of the micropreemies out there who are otherwise typically developing seem to have delayed language skills. I am not sure why anyone finds this to be surprising---you try shoving a fairly rigid tube down my throat and I too would be averse to all things oral and have all sorts of motor problems when it comes to moving my lips and the like....

And that brings us to topic number two in the family (which is indeed topic number one around here): eating. Or not. Sharon and I are arguably too good at this skill (and lack time to exercise). Hallie, on the other hand, exercises to her heart's content and would prefer approximately zero time eating.

Hence, while she gained weight during the first part of this month (reaching a high of 17 lbs. 5 ounces, or about 25th percentile on the growth chart for her adjusted age; she is 72.5 cm or about 75th percentile in height for adjusted age and 43 cm head circumference, which is 25th percentile for adjusted age), it's our very strong suspicion (confirmed by unscientific lifting of the baby that involves little to no exertion) that she has lost weight over the past couple of weeks. Of course, this is related to her (most recent) cold and mucous build up, which no doubt makes it hard to eat (as in her nose is always stuffed) and easy to throw up (she has so much mucous in her system that she coughs it up, along with whatever paltry amount of food she has ingested. This makes a lot of sense, cognitively, since it's more important to be able to breathe than it is to eat). This is very good for her in terms that it protects her airway but very bad for her weight as it means that, once again, she is threatening to fall off of her adjusted growth chart.

We're not really sure what to do here. Hallie is most certainly not adjusting to the pediatrician's schedule (which consists of: she will eat when she is hungry). Our girl, simply put, has no idea what hunger is and, between all of the cold-related and reflux-related vomiting, I imagine she has come to think of food as evil. Who can blame her? Yet, without eating she cannot get better at eating, In any event, we're hoping that our consult at St. Joseph's hospital in Paterson, combined with the collective wisdom of many preemie parents, will help povide us with some answers about what is going on here. And hopefully we'll also locate a few strategies to help keep Hallie eating. We're already thickening her feeds with Simply Thick that has had minimal impact on her intake. In any event, we'll try to retain a grasp of whatever sanity we still have and forge forward on this because, after all, what else are micropreemie moms supposed to do?

One idea that we've had (but which her pediatrician does not favor) is introducing Periactin. Periactin is an antihistamine that also functions as an appetite stimulant and, while it doesn't work for all kiddos, it does seem to be useful to a whole bunch of them. It seems to me that it might also be helpful in terms of preventing her mucous buildup (since it is, after all, an anti histamine). Yet, from what I gather, it's not a good drug to prescribe to those with respiratory distress. Yet Hallie is prone to colds but not pneumonia or any knid of desaturation of oxygen; it's unclear to me wether she is in respiratory distress or whether she simply has a chronic but not terribly devestating form of reactive airway disease. Anyway, I will bring this up again with her ped. and GI specialists and see what they think...

Meanwhile, we'll just muddle through...


Jill said...

Our little guy absolutely hates to eat food and only takes a bottle. He's about 7 months adjusted. The new PT/OT recommended that I stop trying to feed him myself and just let him play with the food. So now, I take a couple of jars of applesauce and dump them on the highchair tray and he sloshes it around and eventually puts it in his mouth. Somehow, he ends up eating more that way than if I try to feed him myself. I know that Hallie is far-far-far ahead of our guy, but I thought that maybe she would enjoy just playing with her food and then transition into eating more. Sorry, it's the best advice that I have to give. ;-( Good luck!

Jamie and Jill said...

AHHHH...poor Hallie and Mommy's! I am so sorry she is not feeling well again.....and still not wanting to eat.

Sorry, I can't give you any advice on eating:( But, I'll keep you all in my prayers!!!

Sarah Furlough said...

I agree with Jill; poor Hallie & Mommies! I really hope you guys get more than a 10-day reprieve from the URIs!

As far as the language, I have noticed that Coop is markedly delayed in that area. Most FT babies close to his adjusted age are much more vocal, and we are really working hard on it. He babbles a lot, but uses very few discernible words.

Thinking of you guys!

23wktwinsmommy said...

Hallie is doing so well developmentally...I hope Serena and Edwin begin accomplishing the things Hallie did at their age!!!
As for colds, both S & E still have rements of their cold from 4 weeks ago! Just a nasty cough and some dried boogies in their noses. yuk. I hope everyhting goes well with the eating. Looking forward to the photos of Hallie feeling BETTER!!!

Tara said...

We are in the same boat..have been for quite some time now. We are also looking for answers too. I can't offer much advice, but I do empathize and please take some comfort in that you are definately not alone in this preemie battle! We actually just made a surgery appointment for a g-tube because of this eating/weight loss issue...and my son is 16 months old! I love reading your blog as you both have gone through a similar journey as my husband and I have...23 week twins with one surviving miracle baby.

Good Luck!

Anonymous said...

Tough stuff, and I wish I had better insight.

I can't compare Henry's situation to Hallie's remarkable adversity so far, but we observed similar lack of interest in eating and gagging, vomiting, etc. until about ten months. It has gotten so much better, though he still could take it or leave it a lot of days.

I'll keep you all in my thoughts and prayers that things will improve!