Hope's MRI

Yesterday, David and I drove to Indy to have an MRI done of Hope. We went to St. Vincent, which is where all of our care will be happening. The Peyton Manning Children's Hospital is part of St. Vincent, and while we won't be in the children's hospital, apparently my MRI was scheduled through them. So, much to my delight, I got a reminder call from Peyton Manning this week! It took me a minute to realize that it was just a recording of his voice, but that was definitely a funny moment, picking up the phone and hearing, "Hi! This is Peyton Manning calling!"

The MRI was long and fairly painful for me (imagine pregnant hips and knees lying sideways on a rock-hard board for an hour), but they were able to get the pictures that they wanted, both of her brain, and other parts of her body. After the MRI, we met our fetal care coordinator, Rosie, who took us over to neurology for our meeting with the pediatric neurologist.

So, where to start with the information? I have so much of it that I'm not sure I'll be able to make it all make sense for you all, but here goes!

On a scale of large-medium-small, Hope's encephelocele is SMALL! The neurologist said that this is a good sign. And, the amount of brain matter it contains is also small! Unfortunately, the amount of brain matter could change (get larger) over the next 3 months, so that is definitely something to pray for: that it will not grow any larger. The part of her brain that is in the sac will not grow as well as it should. It's receiving less blood and oxygen than it should be getting, and there is also the possibility that it is having pressure put on it as it squeezes out through the opening in her skull. What this means for Hope, after she's born, is hard to tell. The neurologist focused more on physical bodily functions being affected: ability to walk and write, and worst-case: Hope's abilities to breathe and swallow being affected.

The other thing that they were able to see with the MRI is that the bone structure in Hope's face is otherwise normal--she does not have facial deformities, which would indicate more extensive damage. While we still cannot be sure that she does not have a chromosomal disorder, the fact that everything else in her body looks good is a good sign.

We also learned that in most cases, surgery is done on the baby within 24 hours of their birth. The only reason they would not do surgery that quickly is because the baby's vital signs are not strong enough to do surgery. Either way, that is a scary scenario. We did not talk to a neurosurgeon, so we don't know much more than that about the surgery, but at least that is something we can be thinking about and trying to prepare for.

Some of the peripheral things we learned:
*Rosie described what will happen during and after my C-Section, and how Hope will be handled.

*Rosie described life in the NICU for us. I'm not sure what I was expecting, but her descriptions of how long it would be before I am able to hold Hope (2-3 days after she's born) were painful for me to hear. In the midst of extreme sorrow for me in that, David has encouraged me that without modern NICUs and technology, Hope would die. As much as I hate it, this is for her good, and we are praying that God will use the technology to save her.

*That there really is nothing I could've done to prevent this. We even talked about folic acid, and after discussing my diet with the doctor, she said that she does not believe that a nutritional deficiency caused this. Right now, there is nothing I can do to make it better. I was nervous about continuing to exercise, but that will not help or hurt Hope.

*Because of the neurological damage that Hope will most likely have, her immune system is not as strong as a normal child's would be. She will be more susceptible to common flu and cold bugs, and it will be harder for her to fight and overcome this. With 4 other children, this worries us. In the past 8 weeks, we have had walking pneumonia, sinus infections, bronchitis, pink eye, Laura's ear-infection-that-will-not-die, and that nasty, nasty stomach bug that went around church (yes, that was the most miserable I have EVER seen David). While we know that there is no way we can protect Hope from getting sick, we will be trying to think about strategies for keeping our house a little more germ-free.

Here are specific items for pray for:
--the the amount of brain matter in the the encephelocele will not grow larger
--that Hope will not develop hydrocephalus (too much fluid pushing against her brain) while still unborn
--that David and I can continue to keep life as normal as possible for the other kids right now
--that we will trust God with our sweet baby, and not let anxiety take over. The statistics are still dauntingly against Hope, but we know that He holds her in the palm of His hands, that He sustains her, and that He created her exactly the way she is for a reason.

I will see Dr. Hiett down here in Bloomington for another ultrasound in 2 weeks. After that, when I am about 34 weeks, we will be scheduled up in Indy for a meeting with Dr. Hiett (my super-OB), the neonatologist (the super-pediatrician), the neurosurgeon (the guy who uses the knife), a tour of the NICU, and an amniocentesis. In between, we will schedule a date for my c-section, which will be at about 38 1/2 weeks. I am thankful that I do not have to be driving up to Indy every week, or even every two weeks, and that these last 3 months before Hope is born can be as normal as possible for the big kids.