Tuesday, January 6, 2009

Health Update

I just thought I'd give you all a brief update on Becca's ongoing health concerns.  Thankfully, there are very few of them!

First off, she weighed 8 pounds, 9 nine ounces last night and measured 19 inches at the doctor last week.  She's still officially on breastmilk fortified with formula, but I'm experimenting to see how she does without the formula, since we know my breastmilk is high calorie already.  (I don't know if I ever mentioned this on here, but normal breastmilk is considered to be 20 calories an ounce.  While she was in the hospital, they spun my milk to get a calorie count so that we would know exactly what she was getting.  My milk is 29 calories an ounce.  Wow!  Turns out my body isn't good at growing babies inside, but it can grow them on the outside!)  I'm going to see how she grows in the next week without the formula and evaluate that against the gassiness, discomfort, sleep times, and change in amount that she drinks in order to figure out what the best balance is going to be.  Our doctor still recommends that she have the formula, so I'm sure that we'll continue to supplement some of her bottles, but maybe not all of them anymore. 

We saw the endocrinologist last week, and he was thrilled with her growth (which is something endocrine looks at closely, since much of our growth is reliant on properly balanced hormones).   They took more blood (this time from her heel, much easier for everyone!) to test her levels, and they were good - even a little on the high side.  This was after they had decreased her Synthroid dosage last month, so it looks like her body was able to compensate and produce the appropriate amount of thyroid hormones, so we took her completely off the Synthroid and will test again at the end of the month to see if she's able to do it all on her own.  She might have outgrown this issue!

We will take the blood and test when she goes in for her hernia repair surgery, which was supposed to be yesterday.  However, they have also decided that she does need tubes in her ears, so they are putting off doing the surgery until both surgeons can work with her at the same time so that we only have to put her under once.  It looks like it will be the end of this month or the first week of February now.  After they place the tubes and repair the hernia, but while she is still under anesthesia, they will repeat the long, in-depth hearing test (the ABR) to see if the tubes have indeed fixed the problem.  We anticipate that they will, but this will give us a definitive answer.  (I think.  Often the answers that are supposed to be definitive, um, aren't.)  Both of these surgeries are minor procedures, but because of her health history, they are going to keep her overnight for observation. 

What else...?  Insurance has approved for a home health nurse to come to the house once a month for the next couple of months to give Becca her shots (and weigh her, etc.) so that we can avoid going to the germy pediatrician's office and risk getting sick.  The fact that insurance is willing to pay to have someone come to us reminds me of how fragile Becca's health is in that they are that worried about her being exposed to germs.  So we'll stay put in the house for several more months.  I'm starting to feel a bit like Ambrose Monk, for you Monk fans out there.  But it's nice to be home with her.

On the horizon:  we go to our first appointment at the NICU follow-up clinic next Wednesday.  I'm really excited about this appointment, as they will do an in-depth developmental assessment to make sure she's on the right track.  We've got a WONDERFUL Early Interventionist coming to the house once a week and working with Becca and us, so we've got a lot of help working with her development, but this is obviously a big issue for all babies, and particularly for preemies.  I just want to make sure that we are doing all we can to help Itty Bitty live up to her potential!  (Wow.  I sound like a mom.)

We're also still looking out for signs of vision loss.  So far, so good.  But anytime she has an inexplicable melt-down, we eventually start to wonder if the world is disappearing before her eyes.  That would certainly make me scream and wail!  I'm hoping to get in with the ophthalmologists before her April routine preemie follow-up appointment. 

Becca's still got more than the average baby reflux, so she's still on Zantac and "reflux precautions" (meaning that her mattress is elevated and we hold her upright for 30 minutes after she eats), but now that's the only medicine she is on (other than the nasty green vitamins).  We've busted out the Baby Oragel, though, because is definitely seeming like she's teeting.  Depending on which age you measure by, this would be a bit early, but I am now convinced - she may even bite on her paci more than she sucks on it - and that's a lot! 

We've still got a whole constellation of follow-up appointments with virtually every department, but we're getting much closer to normal baby lifestyle.  In fact, because she's getting her Synagis shots at home (with height and weight stats), our pediatrician doesn't need to see her back until her 9-month well baby visit.  That's like a normal kid!  Not that Becca is normal...she's still our little diva.

8 comments:

  1. nancy, it is so great to hear such a fantastic update for miss becca. she is just a little miracle!

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  2. Nancy,
    Thanks so much for the update. So glad to hear she is doing wo well. She is just so cute!!! Love, Pam McCormick

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  3. WOW! This was a good report. I would love to see her and hold her. We have not gotten up the nerve to get that far away from all the doctors. I still say a lot of prayers for her and we will love her from a distance for now.

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  4. Yay for Becca (and the rest of the Hill family of course). Wonderful update! Thanks for taking the time to keep us posted!

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  5. I am happy she is doing so well! What a big lady! Been there with the relux...ugh. Nothing worked for us, meds, various formaula, mattress, 30 min upright, sleeping in a carseat, ect. The good news is she WILL grow out of it.Brooke stopped as soon as she was walking. I did find out the stains disapear, only after being boxed away for along time they show back up.

    Thanks for keeping us posted!!!I love reading your blog.

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  6. Nancy,
    It is great to hear good news about Becca. Enjoy your time with her at home this winter. You can't imagine how much you will run around with her when she is older - dance, piano, etc.!
    Jan

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  7. What great news! Thanks for sharing. Here's a link to an online community for past and present NICU families. You can participate in online discussions, create a blog or just make friends. www.shareyourstory.com

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  8. That is awesome! Who wants to leave the house when it's 10 degrees anyway?

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