Monday

Lucy is sleeping and I am just sitting here contemplating the last few hours, days, week, month, year…

Lucy had a pretty good nights sleep, she woke only twice which is considered a good night in our book.  Drew and I have a ratings scale by which we judge what constitutes a good night.  Waking  only once in the night is considered an awesome nights sleep, 2-3 times is a good night, 4-6  times is a bad night, 7 or more is a sh**y night!  After typing this I just realized that it can go from good to bad pretty quickly.

We are waiting to have our swallow study done at 2:30pm.  This morning when the GI team made their rounds they told me that they wanted to wait for the results of the study before talking about letting us go home.  This is so not what I wanted to hear.  From what I understand, they need to asses Lucy’s swallowing issues in order to determine if she can take in liquids by mouth without the risk of aspiration.  This is what I also understand, it is next to impossible to determine if Lucy aspirates breast milk when she is nursing because you can’t fill my breast with barium and have her swallow.  They are going to try their best to simulate the suck and position of breastfeeding  by using  a Haberman  feeder (a special kind of bottle that resembles the flow of breastfeeding).  Here’s what I have an issue with, Lucy has never had an aspiration pneumonia before having the PEG procedure and upper GI, and she has been nursing for 15+ months.  It seems too coincidental that she had this occur immediately after her procedures on Thursday.  According to our ST,  she told me that because of the high antibody content in breast milk it is not likely that a baby can get an aspiration pneumonia from breast milk.   We know that she has aspiration issues when drinking from a cup, I have no problems changing her cup drinking, but to not breastfeed will be an issue.  I have been following the doctors orders, Lucy is currently 100% tube fed, the exact opposite of what we want for her.   If they find she is indeed aspirating all thin liquids than we will need to formulate a plan.  Right now, my plan is to think positive and trust that everything will work out for Lucy’s best interests!