Saturday, December 10, 2016

Our Journey Through Fetal Medicine: Delivery Options Updates and Henry

In our last update we had gotten great news from Houston and had some hope we would be able to deliver in Odessa. The doctor in Houston called a couple days later after the team of specialists including our fetal specialist in Odessa, pediatric urologist, genetic counselor, and fetal specialists in Houston all met to discuss what should happen from here. They felt that while the chance for immediate surgery is small, it is still a chance (unintentionally feeling a little like Dumb & Dumber with that quote). So...we will be delivering in Houston. It is not the worst news ever and feel more comfortable delivering there, but it definitely has put a new spin into any plans we could've ever made. We will move to Houston in early February and stay until AnnLouise is sent home. And they have no idea when that may be. 2 days, 2 months, 2 years...we won't know until she's born.

That same week we went back to the specialist in Odessa, but the doctor we typically see was not in the office. After speaking with him on the phone and reviewing our case, the new doctor felt AnnLouise's bladder and 1 kidney may have gotten bigger. We were quite surprised by this as 2 days earlier there was no indication of this. Nonetheless he wants us to go back once a week for ultrasounds to ensure her amniotic fluid levels remain normal. Her entire diagnosis has been hanging on these levels, so we know it is vital that these stay normal. If they begin to go down, we will have to deliver early.

Overall, we are staying positive since this was a new doctor to AnnLouise. These situations are hard to come into at 26 weeks, but we are thankful they are so diligent and ensure that any small changes are not overlooked. We will go back Monday at 28 weeks and hopefully our regular specialist will be back in the office and can give us a bit more guidance for now.

We are also scheduled to head back to Houston at the end of this month. We will fly down from Arkansas during the holidays to meet with our new OB (the 3rd OB we have seen during this pregnancy! Hopefully this is the one who will actually deliver this baby), the urologist, and the fetal specialist. I can't get over how many amazing doctors have walked us through this pregnancy. They are all some of the most wonderful doctors I've ever met.

In other news Henry tested a little high for lead at his 12 month checkup, so I had to take him for more blood work. He did great, but it is never fun to hold your baby down for a needle. I called almost every day for 3 weeks for the results but kept being told the results weren't in yet. Finally I got the results myself from the lab and his results were high.

That afternoon Cash and I went to the pediatrician's office and met with the COO. Then the doctor met with us and immensely apologized for the oversight and took responsibility. He said he had the results before Thanksgiving but somehow their system let our son slip through the cracks and the news had not made it to us. That's always a good feeling.

He was very apologetic, and for that I'm thankful. It just didn't help to add this to our plates. In good news his levels weren't so high he needs to start meds. We do, however, have to get more blood work done in a few months in Houston since we will be living there by then.

At this point we are ready for Christmas and hopefully just some good rest! We have a lot to do in the next couple of months, but we are trying to take it day by day and enjoy this time of year with Henry. We took him tonight to enjoy Christmas lights. Watching him gobble down chocolate chip cookies and awe at the lights was good for the soul. I rocked him to sleep later and couldn't help but think that despite all the hardships in the past few months, nights like tonight are what make life worthwhile. We may have trials to endure over the next few months, but tonight I just want to live in the giggles of the little guy and savor his cuddles he gave as he drifted off to sleep.


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