Tuesday, May 14, 2013
monday 5/13/13
no real new news today. the nurse practitioner is calling her heart condition tetrology of fallot. i did not think she had this, and hadn't heard it before, and i think it got exaggerated when nurses pass on report and that is not really what it is. will clarify it in the morning. in rounds the doctors talked about dialating the esophagus this week but did not set a day. it is a bit early as this is not usually done until at least after 6 weeks post surgery and we are not quite there yet. yesterday the dr told me that they rarely see babies with an esophagus as narrow as Ava's. it is so small that they couldn't even get the smallest pediatric NG tube down her throat but instead had to use PICC line tubing...which is quite a bit smaller than regular Iv tubing. i got to hold her for about 2 hours today since a nice lady who i met at the ronald mcdonald house 2 weeks ago offered to watch my other kids. that was nerve racking since she really is a total stranger to me. the boys had fun at her house. turns out i went to high school with her husband's youngest twin siblings. she has a sock on her hand because she's starting to pull at the tubes. amber
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Oh, I do remember the socks. And mittens. When Preston was in the NICU he used to pull his feeding tube out almost every day and it was a horrible process to get it back in. ugh. I've been praying for you all. -Amanda
ReplyDeleteThanks Amanda. Every bit of prayer is a blessing.
DeleteAmber, Nick and I are praying for baby Ava. We are also praying for you guys. It brings back memories of us in the NICU with Sadie and how hard everything was. We will continue praying for you guys and for Ava to improve and for you guys to be comforted and strengthened as you go through this hard trial. Thank you for keeping a blog to update everyone of the situation. We will check back often.
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