31 WEEKS! Here's a lot of information crammed into one post

I'm officially in my 31st week of pregnancy. I can't believe how fast it's going. Espeically since this means we only have about 4 weeks left until we're parents.... we think. :) Nothing's ever certain and the doctor can't give us an actual time frame yet. I know I'm lame and I don't have a picture with this post, but I'll post one soon when we get a camera which is hopefully this weekend.



So.. here's an update on Jake! We have met with both our pediatric neurologist and neurosurgeon, both of whom we LOVE and are so happy to have. Combined with our specialist OB Dr. Carpenter, we have the dream team of doctors and we couldn't be more pleased with them. I'm basically going in every week now for monitoring to my OB-GYN. Jake's head is about term size now (or larger), the size of a baby at about 40 weeks and the fluid is still there. Two weeks before we got that news, we learned that his head had grown significantly, but at the last appointment it hadn't really grown at all, which is good news and hopefully a trend that will continue! The doctor said that his head looks pretty much like another baby he had delivered a month or two ago and they had to take him at 35 weeks, so that's what we're counting on right now.



We also got some really good news. We sent in some amniotic fluid to get Jake's chromosomes tested to make sure his hydrocephalus isn't genetic- on the x-chromosome. This genetic hydrocephalus would mean that if we had another boy there would be a 50/50 chance of recurrance, and also it tends to carry other things along with it such as severe mental retardation and physical impairment. We got the results back and they are negative!! We are so grateful and so blessed that every test has come back normal and as far as we know the hydrocephalus is the only problem. Many times Hydrocephalus goes along with other birth defects but so far, we have found none in our baby. We know that this is a huge blessing and also that it may not be so if it weren't for all the faith and prayers we've been receiving from friends and family. Thank you all so much. The ultrasound does show that the fluid is pushing his brain out toward his skull (which happens in all hydrocephalus babies but on different levels) and Jake's brain in some spots is very very thin, almost non-existent. Hopefully once he's born and the fluid is drained we will be able to see miracles happen with his brain development. But his heart rate is normal, his movement is great, and everything else seems to indicate a healthy baby. We're confident he'll be a fighter.

The neurologist said we can expect cognitive delays and also possibly problems with motor development. We love our neurologist and neurosurgeon. Both said to stay positive because they've seen worse cases of hydrocephalus turn out just fine. They are positive and kind and calm, and they give us hope. We're so grateful! The neurosurgeon, Dr. Whitehead, is someone who we're REALLY excited about. I had researched him a lot before we met with him and I was ecstatic that we got an appointment because his main focus is hydrocephalus. In fact, he's in a group of doctors from around the country who study this and try to make improvements on treatment. In fact, he said that if our baby's ventricles stay open as wide as they are with the fluid pushing them out that he may be willing to try a surgery that would be an alternative to a shunt, which would be awesome! It's called a Third Ventriculostomy. It's where the doctor goes in and makes a small hole in the brain tissue where it won't hurt brain function but allows the fluid to drain. The only problem is that there's only about a 20% chance of this working for life. But if Jake is in that 20%, right now we feel like that would be a miracle to not need a shunt. The more we learn about shunts the more we realize what a burden they are as much as they are a help. They tend to fail often, get infected, clog, and over or under-drain. Obviously if he has to have a shunt we'll deal with it and pray for the best, but if any of those conditions happen (which they eventually will), he'll need emergency surgery to correct the problem. So we always will have to keep a close eye on him no matter what. Dr. Whitehead is probably one of the only doctors in the United States to even consider doing a Third Ventriculostomy on a baby. In fact, I had read that you couldn't even get one for a baby at all! He seemed optomistic that even if it doesn't work and Jake ends up needing a shunt that it's ok... there may be another chance to try the Third Ventriculostomy again. In fact, his whole attitude was that no matter what happens there is always a reason to hope that something else will work. We absolutely love him! An interesting note: Both doctors said that there's a small chance the hydrocephalus will at least partially correct itself by the time he's born. They said that in a small number of babies this happens, depending on the reason for the blockage. Fingers crossed!

In the meantime, we're trying to get things ready as much as we can. Jake has some really cute clothes to keep him warm and cozy in the hospital, and that's really all we know that we need for him right now because we're not sure if we're going to have to buy him special equipment, or if I'm going to be breast or bottle feeding... all those things are up in the air just depending on how he does. I'm feeling very pregnant now and the aches and pains of pregnancy are really starting to show themselves. I'll be in my 8th month next week and in some ways I'm grateful I probably won't make it to the end. Jake's a big boy because of his head, and I sure do feel it! I think by the time my C-section comes around I'll be ready to have my body back to myself. I can't imagine going to term with him and luckily I most likely won't have to. Plus, I think the most brain damage with hydrocephalus occurs after the 32nd week of pregnancy. Not positive on that, but it's something I read.

We just want to say thank you to everyone because we know we're in your thoughts and prayers and we want you to know that we feel your faith and love even though we're so far away from many of you. Some days are harder than others for me, where I just don't know how I'm going to handle this and if I'm going to have the capacity and strength to take care of this little boy. And then that's when I feel God's love, and I feel the prayers you have been sending our way. Our burdens are made lighter and we can get through the next couple of weeks. We just try to take it a day at a time and just be optimistic about Jake's life. It helps to have optimistic friends, family, and doctors. Thank you all!

If you would like, please visit fetalhydrocephalus.com to see pictures of these special babies and read a little more about the condition. The main reason I've been posting this website is so that I can prepare everyone for the pictures of Jake we're going to post. We feel it's important to not hide his pictures and we want to show him off, but at first it can be shocking to see a hydro baby. The menu on the left of that website has a link to a gallery and you can see what the babies looked like at birth and then as they got older. It also shows the range of outcomes from hydrocephalus, which I think is awesome.

Ok, we'll keep you all posted. I'm planning on bringing my laptop to the hospital too while I'm there so I can post pictures and catch everyone up on how Jake is doing.