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Tuesday, October 23, 2007

One-Year NICU Follow Up

It's hard to believe, but Hallie just had her annual NICU follow-up. As usual, Hallie was thrilled to be there, mostly because it's the one doctors' visit where we happily release her from the confines of her stroller and let her race about on the floor like the whirling dervish that she is. Even better, she gets to play with a whole new set of toys with what must seem like abandon to her and no one even minds much if she puts stuff in her mouth, makes big noise, and tosses stuff about. In fact, all of the above and more are encouraged.

The easy stuff first: Hallie has put on weight again and is now a whopping 9640 grams, or just a bit above 21 lbs. She is also very tall: 30.5 inches. This places her at the 90th percentile for height on the adjusted chart and at the 50th or so for her actual age. She's around the 50th percentile for her adjusted age and 25th percentile for her actual age for weight. We forgot to note what her head circumference is, but it seems on target.

The only problem we have with these follow up visits is that we are never told how Hallie does on these tests, so we're kind of left guessing. We know that Katie was quite impressed by how stable Hallie was on her feet and how well she got up and down from a standing position. We also know that she was delighted by Hallie's 'walking.' Our munchkin only ambulated while holding Katie's hands, but I guess she looked pretty good doing it. (On that note: since Sunday, Sharon has managed to coax Hallie into independent steps numerous times and we always applaud, but Hallie has decided that, despite the positive reinforcement, she doesn't want to walk on her own quite yet. Indeed, she has responded to our efforts by pretending that she cannot stand on her legs. Very frustrating, but we know that she's just trying to exasperate us and so we're trying not to let her reluctance get to us) and we also know that Katie thought Hallie was a great crawler, amazingly adept at shell games (she kept choosing the correct hand when Katie hid toys from her). We were also amazed that Katie thought that Hallie's 'talking' was impressive. From what our Speech Therapist, Jenny, said last week, we know that Hallie's delayed in terms of her speech but at least she's made sufficient progress to fool the experts.

Where we are most concerned is in the arena of Hallie's fine motor skills. Hallie knows which puzzle piece goes where and can sort of get the piece in the vicinity of where it should be, but she has trouble manipulating pieces into place. She also knows what 'on' means but she has a lot of difficulty actually placing one block or object on top of another. And, while she can sometimes pick familiar objects out in books by looking at them, she is (at best) very inconsistent about pointing at objects. Finally, she has pretty much zero idea about what to do with a crayon (other than eat and throw it). This last shortcoming is probably our fault: since Hallie eats paper, we've never given her paper and crayons to draw. In all cases, if Hallie determines that we are asking her to do something that she cannot do, her response is to throw whatever the object is that we are asking her to manipulate and to move on to something else. I guess that the upside is that Hallie has developed a very, very good right throwing arm. Even if she never learns how to do a puzzle, perhaps she can be a major league pitcher.

Anyway, when we asked Katie about how Hallie did, she hedged a bit but said that she could work on her fine motor skills. We don't know what level she's at, but it kind of doesn't matter. What we're planning on doing is this: we're paring down the number of toys that she has access to at any one moment so that we can get her to focus more effectively. We'll leave out two of her megablocks, two of her bristle blocks, her puzzles and books, and a few other choice objects. Perhaps this will help Hallie from getting too much in the way of sensory overload and help her refine some of her emergent skills.

The upshot is that everyone is pretty impressed with how Hallie is doing. The neonatologists remember all too well how small Hallie was at birth (590 grams) and how fragile her condition was. They are thrilled that she climbs all over them now (and that she doesn't remember that they were the ones who intubated her numerous times, ordered those heel sticks, drew her CSF when she was suspected of having a fungal meningitis. They were not very hopeful about our twins' outcome (read: they were downright pessimistic and presented us with all of the statistics that are relevant to babies born at 23 weeks). They have no idea, and neither do we, why Hallie is doing so well and why we lost Olivia. They have no way of predicting which babies will thrive and which will face difficulties, let alone which kind of difficulties these babies will face. Nor do they purport to play God, or any other omniscient or omnipotent higher being. I've talked at length with Hallie's doctors about such matters, and most of the time they harbor serious ethical doubts about their jobs, even as they work hard to do the best possible jobs that they can do. I appreciate their candor and I know where they are coming from. So much of their field is creative and forces them to think on their feet, but they understand quite well that the babies whom they are treating are not guinea pigs or lab rats and that the actions that they take--or choose not to take--have real life implications. They also know that they don't always know everything.


Laura said...

your last sentence sums it up pretty well. note that i say that while wearing the old nicu nurse hat. experience and statistics tell us a lot of what to predict, exect and anticipate but it never fails that we end up being wrong sometimes.
frankly we love it when that happens.
so do preemie moms like us!
you guys are doing a phenomenal job!

23wktwinsmommy said...

I had a similar conversation with a NICU nurse last night. She also seems to have serious ethical issues with resuscitation and aggressive treatment of extremely premature babies.
We talked at length and still there was very little that came out of the conversation. It is such an impossibly difficult dilemma. Technology is far ahead of our understanding of long term outcomes for these extremely premature babies; and this goes beyond our understanding of how they do developmentally from 0-3. There is school; and how these children learn and process information is largely unexplored in any meaningful research.
Nevertheless we love our children and are so eternally grateful for their lives. Like you are doing with the reflux issue, as parents, we meet each new challenge and we manage it. We may not be able to change or "solve" the issue our children face, but we can sure do our best to make life the very best for our little ones.

P.S. I need to buy some puzzles!

Judith and Jason said...

OMG! She's getting so big! Yeah she must have been in baby toy heaven!
Will you be getting a detailed report of your visit? I know it can be overwhelming keeping an eye on Hallie and listening to Dr...
What good news about the follow up!

Anonymous said...

Great post! Sounds like Hallie is, above all, a happy, healthy little girl. You guys are doing an amazing job with her and I hope that the final report finds you feeling positive.

Cora said...

I'm so glad that the follow-up appointment went well. It sounds like she is doing great! I think that Hallie is really focusing on her gross motor development right now. I'd bet that once she masters walking, her fine motor skills will really start to take off. I think most of our little ones can only "do" one big thing at a time!

Fine motor skill wise, she sounds lots like Amelia, if not more advanced. Amelia never guesses right when asked to point to an fact, she often doesn't point, she just wants to turn the pages in the books! She only eats puzzle pieces, and we never give her paper/crayons for the exact same reason as you. Remember that the therapist was probably having her try some things that she expected her to be unable to do.

I think that she's doing fantastic! And woohoo on the weight gain! G-tube...I think not!!!!!

Sarah Furlough said...

Cooper has always been delayed with his fine motor skills. It's something we continue to work on. In the grand scheme of things, I know Cooper is very lucky. I remind myself of that when he still doesn't show too much interest or knowlesge in scribbling or coloring.

You and Sharon really are raising an amazing little girl. Keep working with her, and she'll get better and better with her fine motor skills.

I am impressed with Hallie's weight! I know feeding her has become an almost full-time job, but it sounds like she is charting well for her adjusted age!