Wednesday, February 11, 2009

Neuro-Surgeon Update

Bryleigh had her first follow up appointment with the neuro-surgeonon Monday. We have not seen her since we left the hospital. So I was very anxious to see what her head size was. Well it was 44. This was the size it was when she was born. The doctor said she thinks her head is still to big. It had actually gone up 3 centimeters since we left the hospital. She did say that her shunt was still working, which is good. But apparently the fluid is not draining enough to make her size go down. I have been keeping her at an incline most the day and all night. Although sometimes when Michael left for work, I would lay her in the bed with me, and sometimes let her nap on my bed, so she was not inclined very much at all. The doctor said that we need to always be sure to keep her at in incline. So no more sleeping in mommy's bed I guess. I wonder if it will always have to be this way for it to work to its fullest? Doctor has us coming back in 1 month for a CT scan and a follow up with her. She said that if her head size gets any bigger from now until then, or does not go down any, that we will have to start pumping her shunt. She did it while we were in the office, it looked painful to me, but Bryleigh didn't seem to mind it at all and the doctor said it does not hurt her. When she pumped it I could see her soft spot sink in, that's how she knows the shunt works. If the pumping doesn't work we may have to consider a second shunt. Her incision sites look great and we also got the okay to lay her on the back of her head and on the right side (we were only able to lay her on her left because of the shunt on the right and the incision on the back of her head)

We also had an appointment with the occupational therapist last Thursday. We went to see them because Byleigh spits alot of her milk out while eating. We had been adding simply thick to her formula to increase the consistency. It helped, but took her foreveeerrr to get through 4 ounces, like an hour!! That's to long, and exhausted her. I tried using a faster flow nipple and it was way to fast for her, and she spit half of her bottle out. So the therapist had us go down to the slowest nipple with no simply thick. This has been the best option so far. While we were the I told the therapist that I noticed that Bryleigh always looked to the left, and held her head to left only. This is because this was the side she had been laying on since she was born. So we are doing stretches with her so that her muscles don't get to tight, and to encourage her to start looking to the right, and turning to the right. She seems to be doing good with this so far!! :-)

We leave Sunday to go to Duke for Bryleigh's cord blood therapy! She will actually have the infusion on Tuesday, but we need to be there by Monday morning. We didn't quite make it within the month of her birth, but its pretty close. My granny had free airline miles so thats what we are using to get there. That helped out so much!! I'm a little nervous about taking her on the plane, especially since its flu and RSV season. But I will keep her covered as much as possible. It is a three hour flight I think, so that's not to bad.


Carla said...

WOW! I had no idea you were from Dallas! Its great to see an update on your cutie pie. She is sooo adorable! I hope the flight to NC goes well & that the stem infusion goes even better!

christina rose patlan said...

Stephanie, I want you to know that we are praying for you guys! I have put Bryleigh on a couple of different prayer groups~ I can't wait to hear how her appointment goes........... please let me know if you guys need anything!

Christina Rose Patlan

ps~ i haven't seen Tyler at school in a while....... is he still going there? I didn't know if I was just missing him when I picked up Marco, or ya'll had pulled him to be at home with you :)

Lisa said...

I am so glad that you are able to take her to Duke! Tell the staff there that little Elisabeth says hello!

She is so beautiful!

Josephine said...

I feel for you - this is a tough time, I remember! As for the lying on an incline thing, we had to do that with Avery too, but once the shunt has done it's job of draining all the excess and giving her brain room to expand again, it will just need to stay steady then, and you won't have to worry about always keeping her an incline anymore. I used to put a couple of towels under the head of the crib mattress to keep her sloped. I also remember having to keep her on her left because her shunt was on her right. We got one of those little foam donut pillows to protect it a little when we first started laying her on her shunt side.
She's beautiful, and it sounds like you're doing such a great job!

Kristen said...

We had to keep Cayman at incline in the beginning and then her shunt worked too well that we actually had to put her at a decline to slow up the flow. Eventually the body and the shunt somehow learn to balance out and work together. So be encouraged that Bryleigh will not have to be kept at an incline forever. There are future cuddling days in mommy's bed ahead of you.

I am so excited that you are able to take her to Duke!! What a great feeling it is to get those precious cells circulating! We did this for Cayman when she was a little over a month old.