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...