This past Thursday and Friday (Nov. 8 & 9) we made the trip up to Cincinnati Children's Hospital (CCMH) for our 2 day consult about Henry. I knew going into the two day evaluation that us going to Cincinnati was a good decision; I now know it is and will be the best decision we have made thus far for Henry. Hang on to your hat this is going to be a long post...
On Thursday, I had an MRI that lasted for an hour and a half, but might as well been forever. I have never been a claustrophobic person but after that it's possible that anyone could become claustrophobic. For fetal imaging they wrap you in these coil things making the space even smaller. I literally felt like when it was over if you turned out the lights I would have glowed, but it gave the doctors the information that they needed, so I did it with a smile on my face. From the MRI I went straight into a 2 hour and 15 minute ultrasound. Henry is a feisty little dude. He wanted no part of their poking and prodding which I find hilarious because he is in for a lot of poking and prodding. There were several moments of that ultrasound that lifted my spirits - at one point we could actually see Henry sticking his tongue out at the ultrasound tech. He waved a lot and he has really long fingers. At this point his feet show no sign of clubbing and his legs have movement, which we have been told will change but more on that in a minute. Please keep in mind that at this point in the day I had not had anything to eat or drink since about 8:30 am so when my mom, Nathan and I went up to the fetal care center for our last meeting I was really hungry. I was surprised when they brought me a sack lunch. It may seem silly but I was almost moved to tears over a sack lunch. I didn't ask for it nor did I even know it was an option but they knew I would need it. It was the simplest way that they could show me that they cared and that they were prepared for us. We then met with a nurse from the Fetal Care Center and she was fantastic in explaining things further and helping us understand what awaited us on Friday.
On Friday my first appointment was with a Cardiologist, who did an echocardiogram on Henry's heart and thankfully all looked great! In the early afternoon my Mom, Nathan and I met with the Developmental Pediatrician at the Spina Bifida Clinic. She is exactly what one would imagine a German grandmother to be like, I half expected her to bring us German cookies and bust out in a traditional
German folk song. I knew after meeting her she would be Henry's doctor, for crying out loud she wrote a
book about Spina Bifida why would you not chose her to be your child's doctor if given the option?! At this point all the scans had been read and sent to the doctors so she was able to tell us that Henry's lesion is at L3/L4, which is something we had been waiting to hear for weeks. She then went on to explain what she has seen in other L3/L4 kiddos: it is likely that when he is young, Henry will be able to walk with the assistance of bracing and other supports. She did say, however, that most children with this type of lesion do chose a wheelchair as they get older because it requires such energy for them to walk. Keep in mind that, at this point, this is all speculation and will be determined only when Henry is here and is hitting these milestones like any other child his age would. With the location of Henry's lesion he will most likely have feeling in his hips, thighs and his knees but will have muscle weakness/paralysis from the knees down. She also explained that it is likely Henry will have to be catheterized his entire life because the muscles that would signal his bladder to function will also have paralysis and will most likely never function like mine or yours does. The same goes for his bowels, but we won't deal with that aspect of it until he is around 2 or so. She gave us lots of information, including her book, but she kept saying one thing over and over that Henry is going to be a baby just like any other baby. His needs are not going to be that much different than any other newborn. This gave me a great peace.
From there we met with a Social Worker and a Genetics Counselor from the Fetal Care Center and they offered us more information and explained in a little more detail what it would be like should we chose to deliver Henry in Ohio. Then at 4:15 pm they came to get us for the TEAM meeting. I felt like when I walked in the room I needed to introduce myself with a few letters after my name just to fit in. ("Hi my name is Erin Hinson, ABC, LMNOP, XYZ") But they quickly made us feel comfortable; there was a maternal doctor, neurosurgeon, surgical director for the fetal care center,
neonatologist, nurse coordinator for Good Sam and a few others. They began going over the scans with us. Seeing an MRI image is pretty cool anyway, but seeing said image of a fetus is amazing. I wish I could post a picture here but in one of the images Henry's face looked much like a fish you'd see in Finding Nemo 2, the entire room laughed, which made me smile. The most shocking thing the scans reveled to us is that, just like his big brother, Henry has a duplicated right kidney. Which means between our 2 boys we have 6 kidneys. That's crazy! They explained to us what Henry's surgery/surgeries would be like and that he would have to stay in the NICU for about 3 weeks. I have to tell you the entire time every single one of them called Henry by name as if they were all old friends. They know much more about my son than I do and it gave me comfort that they called him by his name - he's not just some Spina Bifida case, he is Henry Jude Hinson. They were very matter of fact with us, but along with that came some very scary moments. They have to lay out all the risks of what may be, what could happen, worst case scenario etc., although they would always quickly follow the bad stuff with the statement that this isn't the case for all Spina Bifida babies but there can be some outliers. The neurologist that was in the room said something that made my mommy heart leap for joy and will be one of the things that will carry me through this journey, she told us that when Henry is born he will have function and it is their desire to keep him always functioning at that level or better. She then said "
decline is not an acceptable option for any of our patients". It took my breath away, because up until that moment I had done a good job of keeping it together but I lost it when she said those words to us because as Henry's mom I am ready to fight for him in a way I didn't even know possible and it makes my heart full knowing that Henry will now have doctors who will fight for him just as much as I will!
Well I guess that's the Reader's Digest version of our trip. I am sure I left something out but that's what I can remember for now, driving home last night I had a feeling similar to the drive home in college after finals week... sheer brain drain. They gave us tons of material to read and review so i am sure there will be more...
It wasn't even a conversation that Nathan and I really needed to have, but at some point during this 2 day experience we decided that we would delivery Henry in Cincinnati and his care would be provided by the amazing people we met over the course of the trip. This is what we know: I will be calling my OBGYN on Monday to officially transfer my care to the OBGYN group up in Cincinnati and they will deliver Henry at Good Sam Hospital at 39 weeks. A few hours after delivery Henry will be taken to CCMH, by ambulance, and he will set up residence in their NICU. At some point in his first 24 hours they will take him into surgery to repair the lesion, a few days later they may (most likely will) take him back into surgery to install the shunting system in his brain. We're not sure yet when I will have to relocate to Cincinnati - a lot of that depends on the rest of my pregnancy But if Henry is anything like Oliver, he will be content to stay inside for as long as possible. They could have me relocate as early as 37 weeks or I could come up a few days before the scheduled c-section.
Prayer Requests
Many have asked us what to pray for as of right now here is the list:
Healing: Obviously I believe in a God who is in the business of miracles. I pray for the Lord to grant Henry and our family a giant miracle everyday. I believe if He chooses to the Lord could completely heal Henry's body, but I also know that my kind of miracle and God's kind of miracle may be different. The very fact that Henry's heart is beating and that we have
found been lead to a wonderful team to care for him at CCMH is miracle enough for me.
Pregnancy: Pray that from this point forward my pregnancy will be uneventful. No more surprises, no early labor. Nothing. Nada. Zilch.
Henry's Head: Right now Henry has a head circumference that is measuring about 2 weeks behind the rest of his body. This isn't uncommon for babies with Spina Bifida but we, the doctors, need to see it grow. This was probably the scariest part of the team meeting. Talking about what would happen if Henry's head and brain aren't growing, but again they said it is a common find and not something to worry about just yet. But come on I will still worry about it so we need to pray that away. Pray it grows; I want to deliver a baby boy that has a HUGE head! :)
Finances: It's not going to be cheap for me to drive up and down the highway every couple of weeks for OB appointments but it is what we need to do for Henry so we will do it. I will also be away from home for a possible 5 weeks before and after Henry is here, which means Nathan and Oliver will be driving up and down the highway. While we will be able to stay at the
Ronald McDonald House, it's still going to be expensive for me to leave work a couple of weeks early and take a longer than average maternity leave. We also have no idea if I will go back to work full time or part time or not at all. A lot depends on Henry and the care he will need. Again all things we won't know until Henry is here. We are praying that Nathan would find a job that would allow us the potential to be a one income family but also have great benefits - because we're going to need those benefits!
Oliver: There are going to be a lot of changes for him in the days leading up to and after Henry's birth. It's likely because Henry will be born during flu season that Oliver won't get to meet Henry until we bring him home. Oliver's also going to be without me on a regular basis if I need to relocate early and during Henry's stay in the NICU. Oliver is a fantastic little boy, he adjusts well, but this is different than anything he has experienced in his 2 years of life. As his mommy I want to fight for him too and I know it's going to be hard on him and my prayer is that God would allow me to give myself some grace and not feel guilty for leaving him and that the Lord would give Oliver a peace during this time.
I know that just as He has promised God is going before us and preparing the way for us. I believe that this trip has made all of this real in a way it wasn't a few days ago. We have some realistic expectations now, we understand a little better what we're dealing with but we have also seen God beautifully orchestrating the entire thing. I found this verse a few days ago and I believe it will be one that now stays with our family forever.
Just as you cannot understand the path of the wind or the mystery of a tiny baby growing in its mother’s womb, so you cannot understand the activity of God, who does all things. Ecclesiastes 11:5 (NLT) As many of you know I'm a planner. There isn't much I can plan for right now, but this verse and many others have given me a great peace. I know that at this very minute God is handling the planning. He is doing great things to prepare us, our families and our friends for Henry. I know that one day I will be able look back with the realization that God took care of everything.
-Erin-
