Setback

Hi People,

I wish I was writing from home!  We got some not-so-great news yesterday, though, which means that we will not be saying goodbye to Sanford quite yet. 

On Sunday afternoon, Reese's doctor told us that there were some inconsistencies in her sleep study that he needed to look into.  But he was hopeful that they would be explained and we could go home yesterday or today.  Well, yesterday passed with no news of discharge, and a different doctor did rounds yesterday afternoon.  She had studied the test as well, and she concluded that Reese is indeed having several episodes of apnea at night (and daytime too).

Basically, she stops breathing for 15-20 seconds, causing her oxygen level and heart rate to dip.  I've seen her do it a few times, and her lips and face turn a little bit blue.  She also has a lot of periodic breathing, which means that she takes very shallow breaths and then deep ones to catch up, which also drops her heart rate and oxygen level.  She usually comes out of these episodes on her own, but she has had to be stimulated a couple of times too (rubbed or sat up so she remembers to breathe).

Obviously this would be dangerous if we took her home.  Right now the monitor alerts the nurses when she desats, but we would have no way of knowing at home whether she was doing it until she turned blue (or if we were sleeping, we wouldn't know at all).  I take that back...I would never sleep.  Ha. 

I asked the doctor why she is having this, and she said it is a symptom of Reese's prematurity.  Most babies outgrow it by 42 weeks gestation (she is 37).  So we are looking at about a month.  Instead of staying here for another month (NO! PLEASE NO!!!), they can treat it by giving Reese a dose of caffeine every day to stimulate her to breathe.  Then we will go home on an apnea monitor that records her vitals and alarms if she stops breathing or desats.

The caffeine will hopefully take care of the episodes enough so that the monitor will never alarm, but I am glad they are sending it home because I think it will give me peace of mind.  We will get the green light to go home as soon as her episodes decrease and they know the caffeine is working (as early as Thursday). 

It was hard to hear yesterday that we had to be here for 4 or 5 more days.  Very hard.  I-cried-in-front of-strangers-and-I-never-do-that hard.   But I've had a little time to digest it, and I'm feeling better now that I talked to my case manager and got a better idea of what the monitor will be like.  It really shouldn't be that big of a deal, and she only has to wear it when we are not watching her (nap time, bed time, carseat). 

SO...we are here for a few more days, but at least we have a plan.  At least we caught this while she was here instead of taking her home and being unsafe.  At least I don't have to worry about having caffeine in my diet while I breastfeed :) 

Thank you again for all your prayers...they are getting us through.