Thursday, February 7, 2013

6a.m.

Boring night.  That is all.

Ha!  Not really.  She did have a calm, sleepy night though, which is good.  Still don't know what time the swallow test is today...hopefully the day shift nurse will call me when she knows.  If they spring it on us like they did yesterday I don't know if I'll make it there in time to go with her since I'm at work.  Adam said yesterday that we didn't have to be there every time she had a test done.  I looked at him like he had lost it--that did not compute with me.  Not being there when she had a test?  Huh.  I hadn't thought of that.  Still don't like it very much.  I'll try my best to be there.  I'd like her to see a familiar face beside her when she has to go do something new and scary.

Is it ok to be super crazy proud of your child when basically "all" she's accomplished is surviving?  It sounds sort of silly, I guess, when people manage to survive every day, but Aubrey has proven herself to be one tough cookie, especially since I didn't give her much to work with there at the beginning.  She's going through all these annoying and sometimes gross and painful tests like a champ, still just as content as she can be to have food and be held.  Maybe all babies are like that.  I don't know.  I have limited experience with babies in general, much less babies in the hospital born way too early.  Maybe I'm just a normal, proud parent of a not-so-typical, amazing child.

-Keli

4p.m.

I went down to radiology with Aubrey so she could have the swallow test done about 1:30.  She did really well--took the bottle right away and got down to business.  It's possible she aspirated a little with the first very thin formula she got--she didn't cough or choke or anything though.  She did well with the thicker, honey consistency formula, so they said they'll try a little (like 5ml to begin with) twice a day and give the rest through the tube for now.  She'll get a different formula so they can thicken it in the bottle; they can't thicken the one she's on now in the bottle because it would be way too thick once it hit her stomach (it's designed to thicken once it gets in her tummy).  So, they're changing her reflux medicine to Prevacid, which is a little stronger than the Zantac she's been on to try and keep the reflux under control.

taking the bottle for the barium test

watching the barium solution go down the pipe

A pediatric plastic surgeon looked at the hemagioma on her nose; the neonatologist is afraid if it grows more it will start to cover her nostril. They've developed a cream that has made progress on either slowing hemangioma growth or shrinking them, so they're going to put that on her nose once a day.  They'll want to keep a watch on it after she goes home, too.

Aubrey is being moved to a step-down type unit on a different floor of the hospital.  It's only about 6 beds with 2 nurses, and it's the place babies from the NICU go when they need a little more time but will be going home in the near future.  She will work on the bottle feedings over the weekend, and the doctors will see how she's doing next week to assess when they think she can come home.  Wonderful and terrifying at the same time!

6:30p.m.

Just got a phone call from the nurse--Aubrey is staying put.  They aren't going to move her upstairs just yet.  Since she is just going to start bottle feeding, they want to keep her where she is so the doctor can monitor her progress more closely.  It's not a setback, it's just a precaution.  I don't particularly mind precautions.

-Keli


2030 hours. 8:30 pm

I am possibly sick with a head cold today. So I can't see Aubrey. Argh. I need to wait and see if this lasts as a cold would or if its just allergies. Thanks to technology I got to FaceTime with her.

Adam

9:30p.m.

Aubrey is almost 16 weeks old and today, for the first time, I got to give her a bath and feed her.  This is not normal.  Again, she didn't approve of the bath, but she did approve of the bottle and finished off the little bit they gave her in no time.

-Keli