Thursday, February 19, 2009

Back Home

We got home last night! Our trip went great. Bryleigh was so good on the plane! She was awake more for last nights fligt, but she was content looking around.

Plane ride home~

She did so good during her infusion on Tuesday. She did not even cry when they started her IV. She tensed up, and I thought she was gonna cry but Dr. Kurtzberg did a great job and got it on the first try!! She slept through the infusion (which was only about 10 minutes. The doctors said she would smell like cream corn from the infusion. And she did, all night! It stunk. lol. They said that when they do the infusions the patients always get that smell.

~All the stuff to prepare for the infusion (her cord blood)~

~Awake after the IV was put in

~Sleeping after the infusion. She is getting IV fluids~

~Sleepy baby :-)

Wednesday we went and met with the neurologist. I have not yet met with a neurologist since Bryleigh was born because I did not think we needed one, but after meeting with him I think it would be a good idea to get one. Her neuro surgeon is great, but the neurologist goes over more issues. Her left eye appears to be maybe a lazy eye, but it could be something she will grow out of, it is not for sure though so we will meet with an optomologist and see. There are a couple others things that we will be going over with her peditrician just to make sure that they are okay. Overall I feel we got alot out of our trip. Everyone was very helpful, we arejust so grateful for the opportunity!!

Sunday, February 15, 2009

We have Arrived!

We are in North Carolina now. We left Dallas this morning around 7:30 a.m. The flight was actually only two hours. Bryleigh did great! She woke up to eat and went back to sleep. Since the plane was not full I was able to get a seat to put her car seat in, so I did not have to hold her the whole time. The weather is not much different from Texas. Tonight they have a chance for snow!

In the morning we need to be at the Duke Childrens Center at 9 for her to be measured, weighed, have blood work done, and a physical. Tuesday she will have the actual infusion! We are so thankful to have been able to do this!

I have not measured her head since the appointment with the neuro surgeon but to me it looks like her head has gotten a bit smaller. I can see the bones in her head more now, which to me would indicate that it has gotten smaller! I have been very diligent about keeping her upright (all the time) and I think its paying off! She still sleeps alot, kinda worries me sometimes, but then again it may be completely normal, i just was not use to it with Tyler (who never slept lol).

Well off to get some dinner! I will update on how things go tomorrow!!

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.