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Wednesday, October 17, 2007

Totally Tubular

No pics tonight...too tired for the frills of blogging. I just wanted to report that, two heavy duty antibiotics, much gut retching and vomiting, and three visits to the pediatrician (we saw half the practice) within five days later, we've decided that we're discontinuing the antibiotics and going the ear tube route. We're hoping that our pediatrician's excellent rolodex can work its speedy magic and get us into one of the CHOP ENTs before the end of the month. The tubes will allow Hallie's ears to drain better, will hopefully stave off not only infections but also hearing loss, and keep our kid well until she outgrows this particular (unattractive) life stage.

Meanwhile, a couple of positive things to report: Hallie had her one-year follow up with the pediatric opthamologist yesterday and, while she's a lot less far-sighted than she was in December (she was positive 2 back then and is positive .5 now), and hence a lot less far sighted than typical babies her age, the doctors are not particularly concerned and feel that if she was slated for severe myopia, we'd already see a much quicker progression to nearsightedness. She will probably need glasses and she has inherited Sharon's astigmatism, but we got really lucky with this one -- Hallie was a blink of an eye (so to speak) away from laser surgery last October.

On another positive note, it seems that the scale's reading on Saturday was off by a lot. On Monday, Hallie weighed 9350 grams (20 lbs. 10 ounces) and today she weighed 9470 or so (20 lbs 14 ounces). We're not sure how she's managed to gain weight through all of this, but we'll take it.

On a slightly less positive note, it appears that Hallie does have an issue with slow gastric motility. Last Friday, Hallie had a milk scan (it was performed by the nuclear medicine division folks at CHOP, whose notion of bedside manner is strapping your kid down to a machine with surgical tape. How pleasant). The whole process was less than fun; thank goodness I checked the website to find out more about the procedure and realized that they had DVD players in the room. I thought bringing along our Sesame Street DVDs would help Hallie consume the requisite 2 ounces in the stipulated 10 minutes (amazingly enough she did), but didn't realize what a lifesaver these would be during the 1 hour and 5 minutes (but who's counting?) we had to immobilize our wiggly worm. Anyway, results were back today and, guess what? The kid has reflux (say it isn't so!) and delayed gastric emptying. We absolutely refuse to entertain the idea of Reglan, which crosses the blood/brain barrier, and would only possibly consider Bethanecol if our Paterson feeding team approves. Meanwhile, a nice high fiber diet with plenty of juice and mylanta is what we're aiming for. Let's hope it helps. And let's hope that being upright and older and bigger will help Hallie outgrow the entire panoply of GI tract issues she has. That cannot come too soon for us!

Anyway, in case you are keeping track, we saw medical professionals on Friday (milk scan), Saturday (ped), Monday (ped), Tuesday (opthamologist), Wednesday (ped). Tomorrow Hallie visits the feeding clinic at St. Josephs. And if all goes well, we then have a three day break until our NICU follow up visit on Monday. So, best case scenario (no more ped or God help us ER visits), we'll have been to the doctor 7 times in 11 days. And this does not count our first Synagis appointment next Wednesday. That'll bring us to 8 visits in 13 days. I think this may be some sort of record.


Nathali said...

wow, that milk scan sounds like a pain!!! Hope she feels better!!

Anne said...

Glad to hear that the eye exam went well, but sorry to hear about the ear tubes. The milk scan sounds like a real joy! Eliza had a CT scan for an ileus back in May and what a screamfest that was so you have my sympathies on the milk scan. I'll keep my fingers crossed that you can get an ENT appointment soon.


Ms.Kitty said...

Better to know now than to find out later! When she's older, Reglan works beautifully (it was how I survived college- I heart reglan and tigan!!!). With vomiting, the stomach is able to retain about 25% of what is consumed.
Hope the tubes go in quickly and she feels better soon!

Judith and Jason said...

Well at least you are getting out and and about! (I am kidding!) Dr appts suck... Seems like everyone I know is getting/had tubes...I understand it makes a world of difference.
Rooting for you in Bucks!
Judith and Nina!

Billie said...

Whew. No wonder you're tired. I'm tired just reading that! Sounds like you are on track to figuring out what works... My experience has been that TIME is the best medicine.

This too shall pass. But it's a painful process:)

Much love.

Cora said...

Poor Hallie and her mommies! I'm so glad that her eyes are looking better, that is great news! I'll be hoping for a quick ENT appointment, and that the tubes are the solution that you're hoping for! That milk scan sounded horrible...I'll have to add it to the list of things that I won't do! (Amelia's doctors love me!)

Jennifer said...

Ear tubes were the BEST thing we ever did for Arianna.

The combination of head cold (exaserbated by ears that don't allow drainage) and antibiotics messing with her system meant major weight loss, lots of tears and heart ache.

Since tubes (in June) she hasn't had one head cold, hasn't been on antibiotics and has been gaining weight (with the exception of now, which is more reflux related).

I think you will be very happy with the decision to get tubes.