Wednesday, April 23, 2008


Good evening everyone! Blair had a really good day today! They have increased her TPT feeds to 11ML/hour and decreased her IV nutrients to 2.5ML/hour. While I was holding Blair today the Occupational Therapist came by to show me some sucking excercises I could do while I am holding her. She said she will be more relaxed if I do them and she was right. She slept through the excercises, but she did suck on my finger at the end and that's the result they are looking for!

Our favorite nurse was back today... Alexis... she is just wonderful and Blair loves her! She let me know that they are no longer putting Silvadine cream on the Omphalocele. They are going to start dry dressing changes and the nurses will do those. That concerned me a bit because I thought they would continue the Silvadine cream until the skin was completely covering the Omphalocele. I know that every case is different so I can't compare it to another case. I called back this afternoon and Alexis talked to the Pediatric Surgeon. He said that they want it to form a somewhat hard layer around the Omphalocele. They thought they would be able to push most of the intestines/stomach/liver gradually in her, but I guess that's not the case now. The skin will grow over the Omphalocele and they will do surgery at a later day. (Cindy, this is kind of like what they are doing for Holden).

As of today she weighs 5lbs 6oz and is still tolerating the feeds. I changed her diaper before I left and she about squirted poo all over me. Luckily I still had the diaper close! She thought she was going to outsmart me I guess! :)

I still haven't heard anything else about the spinal cord issue. I need to find out exactly when they will do an MRI to determine exactly how bad/good it is.

That's about all I guess... I hope that everyone is doing well! Thanks to everyone for stopping by the site! I hope to put something out here daily!

Hugs and Love!


Bird said...

Those are some tricky babies--trying to poop on their parents.

I hope they give you some news on that spinal cord thing soon! Whatever they tell you, just remember that the doctors tend to give you the worst-case scenario. I don't even want to type the things the doctors said about Charlie--he's proven them wrong!

I don't know what you tell you about the omphalocele--the doctors usually know what they're doing, though.

Small Town Girl said...

Just wanted to let you know I'm checking in on you guys. Glad to hear things are going okay. It sounds like she's really growing and doing well. I hope the spinal cord thing will be okay without having to do surgery. Poor girl will have enough surgery without that one added to it!

Susanne said...

Glad to see the little button is doing well...a daily picture would be nice also ya know...LOL
I'm sure the docs know exactly what they're doing however, if you're not happy or in doubt then just ask questions until you're happy...I'm sure they understand.
Miss you guys!

The Bestmann Family