|The twins at Church this morning.|
Now in our second round of being pregnant with a Spina Bifida baby, we again inquired about fetal surgery. Again we were met with the same answers for the same reason and we didn’t push it too hard. To be honest, we were aware of how risky the surgery is and we didn’t think it would be plausible to uproot our lives with the care that Miles requires. Our plan was to deliver Caleb at the same hospital, using the same doctors as Miles. We didn’t need to research and we still know everyone there. Heck, we were just discharged a year ago.
I got a text from my sister in law with a photo of a business card for a neurosurgeon at Children’s Memorial Hermann Hospital in Houston. Through a crazy connection, the mother of the little boy she nannies has a working relationship with this doctor. She mentioned my case to him and he told her to have me contact him directly. I sat down immediately and wrote a lengthy email trying to concisely describe both my sons’ cases. Right away, I was on the phone with the Fetal Department Director. He spent an hour on the phone with me and in the end I couldn’t believe what I was hearing. Yes, I’m a candidate. I would be the first Type 1 Diabetic to ever receive this surgery, but they are willing. They will evaluate me.
Whoa. This just got real.
I was flooded with excitement as I researched and watched videos and began obsessively talking to moms that had gone through the surgery. Along with that excitement entered sheer terror. You see, when this surgery was a hypothetical it was extremely appealing. Now we needed to hash out the dirty details; the pros and cons. Suddenly, there were a lot of cons.
In the fetal surgery, I would relocate to Houston for an indefinite amount of time. There is a large team of surgeons that would perform an incredibly complicated and risky surgery on Caleb and me. I would spend at least the next week in the hospital on an epidural and a drug called Magnesium Sulfate. The horror stories of this drug are fairly scary, but it is to prevent your body from immediately delivering the baby. When I recover, I will be moved to hotel for a couple weeks and will need a 1 on 1 caregiver. I will also be managing a lot of pain. If all goes well, I will be able to return home. If not, I will be delivering Caleb in Houston by myself.
If I make it home, I will be on strict bed rest. As in, I can’t do ANYTHING bed rest. As in, I will need my own private caregiver bed rest. I will be at huge risk of life threatening complications- uterine rupture, placenta abruption, yadda yadda yadda. And then there is my Diabetes. These babies are all born early via C-Section. They shoot for a 34 week delivery, but most of the moms I have spoken with have delivered between 28 and 33 weeks. Then you have a tiny preemie facing a whole slew of complications. And a mother that has put her body through a lot. Some moms say it took them 2 years to physically recover.
So why would we consider something like this? Sounds like a huge drag right?
Because we would do anything for our baby and this could improve his life. Miles’s outcome has been rare. We have been told he is the .001% of Spina Bifida kids that has the worst complications. Caleb looks so similar to him on ultrasound, we want to try and give him the best future possible. Not only for him, but we also believe it will improve the quality of life for all of our children. Not in the short run. We will sacrifice a lot for this. But in the long run, we can focus on each of their individual needs best if we don’t have two kids on ventilators.
But we are really, really scared. There are so many things that would have to fall into place for this to work. First, Caleb and I would need to be accepted for the surgery when we go to the consultation in Houston. I will need to find someone to be out there with me to be my caregiver as Bryce will need to stay home to work and be with the kids. The state would need to beef up our nursing hours for Miles and we would need to find nurses to train and fill those hours. We would need the grant company to renew our grant so we can keep our nanny. Our nanny would have to sacrifice another job she has to stay with us longer. And the biggest battle, our insurance has said they will not cover this. Even ACCHS covers this surgery, but our insurance won’t. There are so many details it makes my head spin. We have to figure all of this out in the next couple weeks.
If God says yes, then we say yes.
In church this morning, a verse in a worship song really stood out to me.
“God, When you move, you move all our fears.”
This situation seems almost impossible to me. And the thought of being drawn and quartered…well it’s unappealing. But where God leads me, he erases the fear, doubt and shame of my emotion. He will only lead to the good, glorious and beautiful. Let’s hope that’s all in the big ‘ol state of Texas ya’ll!
If you would like to see how the surgery works, here is a series of short videos explaining Spina Bifida and the procedure. If you get queasy, don’t worry. This is more of an advertising video and doesn’t explain gruesome details.