Hope update

This has been a week of waiting. We were under the impression last week, after meeting with the doctor, that we would be driving up to Indy at the end of this week for more testing and meeting with doctors. However, the scheduler did not contact me until today to set those things up, and it turns out we were mistaken in our impression of when the next set of tests would happen. But, after talking to her today, I have a better picture of what's in store for the next few weeks.

We will be going up to Indy next Friday to have an MRI done (of Hope, not me). After the MRI, we will meet with neurology (one doctor? the whole department? a team of doctors? I don't know). They will be able to discuss their preliminary findings from the MRI in that appointment, and we will be able to ask our questions about Hope's brain at that time. We're quickly realizing that we probably won't get many answers, but will just need to wait, trusting in God, until she's born to see how extensive the damage is.

I will continue seeing Dr. Hiett, who is now my OB, but he doesn't need to see me more than once a month at this point. Fortunately, I can make those appointments down here in the Bloomington office for the Fridays that he is here. So that will save us a lot of driving to Indy. As far as the amniocentesis goes, David and I were still undecided about what we wanted to do when I talked to the scheduler today. She was able to tell us, though, that we can wait and do the amniocentesis at a later date, which is what we were hoping for. We would still like to do it before Hope is born, but doing it closer to her due date will make the possibility of pre-term labor less dangerous for her.

One of the things that I'm thankful for today is the scheduler who has been "assigned" to me. She is a woman who works in Dr. Hiett's office, and her main job is to be the go-between between all the different teams of doctors, the hospital, and us. I cannot tell you what a relief it is to have somebody like that. Up until today, I didn't even have phone numbers I could call to ask questions, and she gave me several numbers. She will also be sending me a packet in the mail with all her info, the doctor's info, the hospital's info, and my scheduled appointments at this time. And, unlike most specialized doctors, she has the ability to speak to normal people :) She understands our medical situation, but she does not treat is as another unique medical problem--she treats us like people. And I'm not saying that the doctors don't know we're people. They just tend to be super, duper smart, and not so much in tune with how the patient feels when you tell them something about their baby's brain. I think that's called "bedside manner." Well, she's got it. Her name is Rosie, so I should have no trouble remembering that over the next few months.

So, that's where we are today. Another week of waiting. But it's not waiting with nothing to do. Life keeps on going, school for the kids, laundry, cleaning bathrooms, and cooking dinner keeps me occupied. And in the quiet moments at the end of the day, I get to sit and feel Hope move around, as she wakes up right when I'm ready to lie down. David and I both enjoy those times, and try to interact with her now as much as possible. For now, I'm able to help keep her safe, and I want to enjoy that time as much as I can.

I have realized this week, in talking to several different people, that there might be some confusion about Hope's problem. She has a condition called "encephelocele", and the cyst on the back of her read is also referred to as "an encephelocele." The second, especially, sounds very similar to a different, but similar condition, called "anencephaly." If you'd like, you can google those terms, but beware--the pictures are intense. Hope does not have anencephaly. That is a condition (also in the family of neural tube defects, like encephelocele and spina bifida) where the baby's skull and brain fail to form, almost at all. Sadly, it is a condition that is not compatible with life outside the womb. The babies born with this deformity usually only survive minutes or hours. As I have poked around on the web this week, I have cried for the mothers of some of these babies who have shared their stories on blogs, and been oh-so-thankful that Hope does not have that birth defect. While Hope's chances are still grim, she does have a chance at survival, and she even has a tiny chance at a completely normal life, which is certainly what we're praying for.

So, until next week, that's it! I will certainly write more if anything of import happens, but between the above-mentioned school, laundry, dinner, and bathrooms, I manage to fill my days pretty thoroughly. Thank you all again for your prayers and support--we would be complete wrecks without all of you (right now, I'm only half a nutcase:).