On to Hopkins...

Well, we are back from Baltimore. If there is one thing I've learned this summer about traveling with a toddler, it's that you simply cannot leave home without a bag of lolly pops and a large package of baby wipes. Those 2 things can make or break your sanity. :)

Anyway, our consults went extremely well. We first met Dr. Gearhart, who was incredibly personable and smart. I immediately felt at ease about our child's condition when we talked with him. You just can't beat getting treated by someone who lives for babies with cloacal exstrophy!

We then had an u/s done by Dr. Crino. It was the best u/s yet b/c it didn't reveal any new problems. (That's a first for us.) Here is what we are dealing with:
1. A beautiful little one who loves to squirm and get into the worst positions possible while being observed on u/s. She's undoubtedly shy.
2. They cannot see an open spina bifida, although it was too hard to see in the u/s. They do see some scoliosis, hemivertebrae, and overall some deformity of the spine in the lumbar and sacral regions.
3. The pelvic bones are definitely spread out pretty widely.
4. The left foot is mildly clubbed, but the leg is measuring the correct length.
5. The right foot was too hard to see, but they are pretty sure her right fibula was missing. The leg looks a good bit smaller, as well.
6. She has a moderately-sized omphalocele (O) and exstrophy of the bladder, hence confirming the diagnosis of CE.
7. They still could not determine the sex.

A couple of great things that we learned during our visit with Dr. Crino were:
1. Her cerebellum looks good, so the chances of open spina bifida are lower.
2. She has 2 healthy-looking kidneys. Oftentimes with CE, the baby is only born with 1.
3. She was moving her left foot while we were observing it, and that indicates that she's probably not paralyzed - yippee!
4. Her heart was beating at a healthy rate - another yippee! Gosh, I can't tell you how wonderful it feels to see her beautiful 4-chambered heart beating.

He believes that since I was able to deliver Jack vaginally, that I can deliver vaginally this time, as well. They only like to perform C-sections for obstetric reasons, like if labor isn't progressing well or whatever. The O doesn't look too big to fit through the birth canal. Also, since Jack hung out in my womb until past my due date (I was induced 3 days after, and I wasn't even dilated at that point), the chances of me going into pre-term labor is small, so, he doesn't feel that there is a need to move to B'more before 37 weeks. Then, I will just wait it out and hopefully go into labor naturally. At ~39 wks, they will induce if necessary.

This news was huge for me. If the above paragraph was all I heard on Monday, it would've made all the inconveniences of traveling to B'more this week worth the trouble. Our plan is actually to arrive at 36 wks, since it will be a long drive, and things like sitting in a tiny Honda Civic is getting more and more uncomfortable everyday. The Children's House at Johns Hopkins, which is a place for families to stay while their children are receiving treatment (at a much lower rate than a hotel), will not allow us to stay there until after we give birth (and that's only if they have space), so I'm in the process of looking for extended-stay hotels outside the city. My guess is that John Mark will help us get settled, then fly back to Huntsville and work, so he doesn't use up all of his vacation time before the real fun begins.

OK, back to our consults...our last visit was with a neonatologist, Dr. Woods, who was a tremendous help in our understanding of our little one's stay in the NICU. We also toured the NICU, and although there were no babies with O's or anything, we were able to see what the feeding tubes, IVs, and ventilators looked like. She said that obviously, we don't know for sure everything that will be done and in what order, but we should expect our child to have her initial surgeries within the first couple days of life. When she's born, they will take her away, cover up her O and bladder with a bag to prevent the area from drying out and from getting infected. They will make sure she's breathing and all that jazz (minor details, right?), then get her ready for surgery. The initial surgeries will probably involve 1. repairing the open spina bifida, if there is one, or other neurological issues, 2. fusing the bladder, 3. placing all her organs into her abdominal cavity if possible, 4. fusing the pelvic bones and placing her on traction. She will be highly sedated and will have to be intubated during the surgery and recovery period. After about a week or two, she will be transferred to the infant floor, where she will have a private room...this will help us b/c the NICU doesn't have much privacy (at all), and this way, one of us can spend the night with her. She will probably be in traction for weeks, which I already know will be one of the hardest things for me to deal with. I can't believe how much I took for granted all the time I spent holding and cuddling with Jack when he was a newborn. I guess we'll have to replace all that with lots of kisses (eew, nevermind, it'll be flu season, lol) and hand-holding.

So, as you might have guessed, we pretty much decided to go with Hopkins. When we arrive in October, we will meet the neurosurgeon and orthopedic surgeon, as well as see Dr. Crino for continual monitoring. My prayer is that she feels comfy enough in my womb to make it to 37 wks, so that we don't have to worry about transferring her from Huntsville or B'ham.

One of the most rewarding parts of our trip (even though I wasn't present, since I was in the middle of the u/s) was when Dr. Gearhart brought a 6 yr old boy and his mother up to meet John Mark and Jack. The boy has CE and fibular hemimelia, has gone through 26 surgeries and counting, but plays and acts like any other boy. He was in B'more to get a bladder placed in his tummy (he was born without one, I believe). He also got his belly button! (Babies with O's don't have them unless a surgeon artificially creates one.) He was born with a very small foot on the side that had the missing fibula, so they simply fit a prosthetic over the area - no amputation was necessary. Although I wasn't able to meet him, it brought infinite comfort to know that our child will get through this and will eventually be able to be a kid. She won't remember a thing about having her legs stuck up in the air for 8 weeks, and she will look at her colostomy bag and catheter and think nothing of it. It certainly beats having to find a bathroom while hiking in the mountains, right? :)