Tuesday, February 24, 2009

Another step...

Mom has gotten the ball rolling for banking Joey's cord blood. One he's strong enough to travel we will go down to Duke University to infuse the cord blood with the Dr. that I read about on http://www.fetalhydrocephalus.com She's done a lot of research on cord blood therapy for Hydrocephalus and it shows promising results. While there's no definite evidence that it helps, there's no evidence that it DOESN'T help either, and if there's even the slightest chance it could help with some of Joey's damaged brain cells I want to try. It's not cheap though, so that's of course my only worry about it. How in the world will be be able to afford it? Mom is a huge help, she's sending a letter out to the family to see if anyone would be interested in helping out. Hopefully if we can pool all our resources we will be able to come up with enough.

Monday, February 23, 2009

No news is good news

We didn't learn anything new today, which is good. I'm always so nervous for appointments, afraid that they are going to tell me something bad. But everything was the same, so that made me feel better. We discussed the birth, which basically is going to be determined by the size of his head, or if I go into labor on my own, whichever comes first. I'm going to start having non-stress tests at my next appointment, and they are going to try to coordinate so I can meet with the pediatric neuroseurgeon, neonatalogist, and geneticist too so I can get all my bases covered. So we are getting closer! Oh, Joey's turned head down, which would explain why I've been SO uncomfortable lately. Right now the majority of his weight is in his head (from all the extra fluid), so having all that down so low has been a bit rough, but I'll deal with it if it keeps his lungs healthy and keeps him from coming too early!

Friday, February 20, 2009

And again...

Well, I have yet ANOTHER Dr. appointment on Monday, at UK, so I can meet the OB who will be delivering Joey. I've met so many people in the past few months its hard to keep them all straight! I'll be talking to this Dr. also to get the name of a pediatric neuroseurgeon who will be doing the shunt surgery on Joey.

I'll just be so glad when Joey is finally here, because at least that way I'll be able to see him and touch him and know that he is ok, and I can get the words "spontaneous stillbirth" out of my head. Right now that's my main worry. Since there's nothing we can do right now about any of the issues, that's about all I have left to worry about. We are getting there! I'm 29 weeks right now, and usually based on the blogs i've been reading, 32 weeks is about when the births started. Of course I don't want Joey to be born until he's as ready as he can be.

Well, that's about all for now. I'll update again after the appointment Monday.

Wednesday, February 11, 2009

Hurry up and wait...

It's the worst part. Sitting and waiting and worrying about what could be. But at the same time trying to think positive. It's the toughest thing I've ever had to do. But I definitely couldn't do it without all the love and support i've been getting. To all my friends and family, thank you! Here is a wonderful poem that a friend of my hubby sent him. It helps me to feel a lot better.

The Special Child---

The child, yet unborn, spoke with the Father.
"Lord, how will I survive in the world?
My walk may be slower,
my speech hard to understand.
I may look different.
What is to become of me?"
The Lord replied to the child,
"My precious one, have no fear.
I will give you exceptional parents.
They will love you because you are special,
not in spite of it. Though your path through life
will be difficult, your reward will be greater.
You have been blessed with
a special ability to love, and those whose lives you
touchwill be blessed because you are special."

author unknown

Monday, February 2, 2009

We're home!

And that was about the longest day of my life. We learned quite a lot but didn't really get any good news. Nothing has improved really but since we found out the cause now for the fluid buildup it won't get any better until after he's born and can get a shunt put in. Its just a matter of how fast the fluid builds up as to when he's born. They also found some new issues...He has a small hole in his heart between the two major valves. The cardiologist wasn't really concerned about it though. He said most of those end up closing up on their own. The other thing was that there might be a problem with his bowels. You could see on the MRI picture the bladder and the rectum behind it, and the meconium in there. It didn't go all the way down to the anus (gotta love the technical terms) and they are concerned that there might be a blockage or some malformation that will have to be fixed after birth. Neither of those things are something to be really concerned about at this point though. The other things that showed up were a shortened chin bone and widely spaced eyes. Both of these things can be an indicator of something genetic that wouldn't necessarliy show up on the amnio, so we may have to do some blood tests on him once he is born. So ya. I feel a bit better because I am more educated on everything and all possible tests that can be run at this point have been done. But bummed because there was no good news.