Glorious Day

[foreverangel]

   

    So lets start by saying it snowed just a little bit Saturday. It was freezing and oh yeah, Schuyler came home. 7 1/2 months later my sweet little girl is home. Now the fun begins. Sleepless nights( and days). Many journey's to and from the different doctors. She has 7 doctors that she has to follow up with probably for the rest of her life. Not to count the 14 meds she is on, at all hours of the night. Feedings 4 times a day and continuous at night through her G-Tube. All this stress and anxiety but my precious amazing, wonderful, bautiful baby girl is finally home. I am sooooooooooooo happy. No more driving to the hospital and wondering what she is doing when I am not there. I will and can see for myself every minute of every day. Thank God for her home nurses though, because I would have a breakdown if I was doing this by myself 24hours a day. It is hard work taking care of a preemie with complications.

   Lets see.....schuylers shunt seems to be working much better after the revision in December. The G-tube is amazing, other than it looks so scary. Her reflux has been acting up like crazy since she has been home. She does this thing where she arches her back and head(doctors say it could be reflux related or a sign of cerebral palsy.) Scary thing to think about although no one knows for sure if that is it until she is older. They are also saying she may not be able to see. That is so sad to me because I want her to see all the beautiful flowers, and to look up at me and for me to know she really sees me. Once again can not tell for sure until she is older. She is well though. We take each day at a time and just thank the lord that he let us keep and take care of one of our twins.

[giulianasmom]

Mar. 3, 2008 at 11:42 AM Giuli also arched a lot when she had absolutely terrible reflux!  Hers got better after her fundo though she still arched some for a few months.   The residual was her high tone but thankfully it went away.  How premie was she?

[foreverangel]

Mar. 4, 2008 at 10:07 AM She was 26 weeks. So 14 weeks early.

(Original Poster)