Wednesday, January 7, 2009

Bryleighs Surgery Update

I tried updating last night but was not able to put the pictures on here that weren't huge. I am going to try again. Lol.
Well, Bryleigh had her shunt surgery this morning. The surgery went very well and so far everything looks good. Her head size went from 44 to 42cm already. So this is great. The doctors did not do surgery on her cephalocele because they think since its so small, (the actual hole in the skull)once the pressure is relieved from the hydro that the fluid pouch will decompress some. And it has, its not as big as it was. They are hoping that it will completely go down and that they wont have to close the actual hole in her skull. This will be better, so that Bryleigh does not have to have another surgery right away. She has been asleep for most of the day. When I went down to visit tonight, she was starting to show some discomfort. The doctors said that if they have to they will give her some medicine for pain. They are also having a hard to keeping a good iv in her. She has been stuck quite a bit. I feel so bad for her. She is overall pretty content being wrapped up in a blanket with a pacifier in her mouth. I can tell that she enjoys it when mommy and daddy get to hold her :-). She is so precious.
The pediatric geneticist (spelling?) came to see her this evening. She said that everything looks great, of course except for the hydro and the cephalocele, but everything else appears great. She ordered a kidney test be done on her tomorrow. There is certain genetic disorder (can not remember the name) that includes the cephalocele, kidney problems, extra limbs, etc. She believes this screening will come back negative, but would like to rule out any possibilities. They are also going to do a chromosomal micro array study on her tomorrow. They will have to take her blood for this :-(.We wont have the results on that for two weeks. She also recommended that I have a few test ran on myself as well, because even though I don't plan on having other children, its still something to know, for other medical reasons.
I am probably going to be released this Friday. I wish Bryleigh could join us, but the doctors said that we will just have to wait and see how things go. Thank you for all your support and prayers. I am trying to stay strong, I catch myself wanting to break down at times, but I am sure that's normal :-). Thank you again and I will keep posting.

Our fist picture together!

Daddy giving kisses!

Getting to feed her!!

Before surgery

Right after surgery



Sweetest Girl in the World said...

Hi Stephanie! She is so precious!! I love the last photo of her, she looks very peaceful and has a little smirk! I've been praying for you two ever since she was born.

Did Dr. Price do the surgery? She's awesome! And, the geneticist that came to see you, was it Dr. Scheuerle of Tesserae Genetics? We see her at Medical City and she's pretty great too! The last two times we've seen her, she has found problems/issues with Audrey that her other docs haven't and referred us to other specialists.

Also, I'm not sure if you've picked out a neurologist, but Dr. Elterman at Medical City is a wonderful doctor - he has really helped me understand everything going on with Audrey.

I know you're feeling overwhelmed and you're upset that she is going through all of this. It's okay to break down - I've broken down many many times, it's a good release for me. Keep the updates and photos coming and I'll keep praying for all of you!!

Josephine said...

She is a beautiful girl, and she looks so healthy. Having your little one go through surgery is tough - I'd be worried if it didn't leave you feeling overwhelmed sometimes!!! But it sounds as though she is doing wonderfully - we'll continue to pray that things go well during her stay there at the hospital. Having to go home without your baby is hard, but try to use your baby-free nights to sleep so that you're ready to look after her when she gets home :)