GAINESVILLE BOUND!!!!

HUGE UPDATE: God willing, I will move to my “new home” in Gainesville, Florida on October 8th for the duration of my pregnancy. Tentatively, I will deliver Baby Rich by November 6th. I can’t tell you how great it feels to have some sort of “plan”—so let me tell you how this has come about.
Monday we (Rusty, Mom and of course Tiffany) drove to Gainesville for my appointments/consultation at Shands Medical Center on Tuesday. We met with Dr. Richards (picture Chris Hanson from Dateline with glasses) who is a perinatologists/OB specializing in high risk pregnancies and an expert in reading ultrasounds. He did an extensive ultrasound where we got to see Baby Rich—he wasn’t quite as active as he has been at previous ultrasounds, so that was good that he behaved for Dr. Richards. Dr. Richards started first by focusing on the heart and doing an echocardiogram to make sure everything was normal. It took a long time and he was naming each part as he went along—pretty interesting to watch. After that he moved on to looking at the herniation and what organs were involved. He could tell that the stomach, intestines and possibly the spleen were included. He did not see any part of the liver and he was able to show us the liver on the ultrasound—Praise God—it is definitely down and looks happy right where it is. He said that at this point in gestation, he would be surprised if it decided to move now—but it is possible. This is a big deal because the liver is a pretty dense organ and having the liver to crowd the chest makes a huge difference on the lung and heart development. Finally, Dr. Richards showed us Baby Rich’s right lung—my first thought was how big it looks—the last ultrasound in Bham, the lung looked so much smaller. I asked him to point it out again because it looked so much bigger to me. He outlined it and made his measurements for the lung to head ratio. We then went into a conference room to discuss his findings. We were told then he would be my OB and that I would need to be down here at around 35 weeks—hence, October 8th. His plan is to induce me on November 6th if I don’t go into labor before then—please pray that I go into labor, inductions don’t seem to work well on first time moms and they typically turn into C-sections. He then told us about our LHR—in Birmingham we had been told ours was a .51—this is not favorable for CDH—especially when a normal baby’s is around 1.6. Dr. Richards told us ours was 1.23—GREAT NEWS for us—although we are all very puzzled by the large discrepancy—I think it must be a miracle because my prayers have definitely been focused on the lungs since we found out the first LHR. I’ll get to what the number actually means in a minute. Finally, we made all my OB appointments for October and we left for lunch.
We had a couple of hours for lunch so we first went and looked at different living possibilities—we saw 3 and chose the 2nd one—it is close to the hospital, good living space, working space for Rusty, a kitchen, pool, workout, breakfast in the morning, cocktails/light dinner in the evening—and just a nice warm feeling! It was much easier than I had thought it would be! After we ate, we headed back to Shands for my appointment with Dr. Kays.
Meeting Dr. Kays was pretty exciting. He took us to a conference room where a resident and med-student joined us for the consultation (Shands is a teaching hospital). He first outlined what he was going to tell us: CDH information—why it happens and risks involved, what happens when a CDH baby is born at Shands, the plan specific to our baby and then finally the chance of our baby’s survival and need for ECMO. I think we would all agree we already felt like experts on CDH—but he told us such detailed information—stuff I had never heard before that we all feel much smarter from listening to him. It wasn’t anything “new” it was just really detailed descriptions of what we already had heard—but so detailed he could have been talking about something else! He explained the risks: death, brain damage, poor lungs, etc. But he also went into why and how his team tries to avoid these issues. His description of the process for the baby delivered at Shands was also very detailed—he basically catches the baby and walks him to the NICU. They immediately intubates the baby and then stabilize (along with other stuff I just can’t remember). He explained that babies typically do well the first day (honeymoon phase) but the second day is when stuff starts to happen—so they are always prepared for that. He discussed his gentle-ventilation technique (as opposed to hyperventilation) and other tools they have for stabilizing a baby (ie: nitric oxide) He explained the variety of reasons a baby would need ECMO and how they make those decisions—he also explained that he is the one in charge of making the final decisions and implementing them. He is there for every decision made for the babies—and as he told us in the consultation—“I even want to know if the baby poots sideways.” For a serious conversation—there was some comic relief! He spoke at length about brain damage and said that it is a very real possibility which is why he is making every decision with regards to the baby’s brain—he repeated many times “Your baby’s brain is always on my mind-always.” He went on to tell us about the issues that are associated with CDH after the baby’s hernia has been “fixed”—feeding problems, reflux, breathing, etc. and told us that the baby’s hospital stay is usually long because the first half is fixing the baby and the second half is dealing with these issues—making most stays around 2-3 months after the baby is born.
He then told us about our baby—told us that 1.23 LHR is moderately severe when it comes to CDH, but that he sees a lot of baby’s with .5-.7—so on the favorable range for him. He spoke about the organs in the chest cavity and how he would probably wait a few days before he did the surgery to move them down. He told us that the echocardiogram showed that our baby already is showing signs of hypertension—which can be serious but is common in CDH babies (around 75% have it) so he isn’t too concerned. He said that the normal chromosomal findings are good because it means that most likely (they won’t know for sure until he is born) this is an isolated defect to the diaphragm. He then said that overall, he sees that our baby has 90% chance of survival and 25-30% chance of needing to go on ECMO. Rusty asked him how “good” his forecasts were—he thought a moment and admitted he had never been asked that but then said they are quite good—I wouldn’t tell you if I wasn’t usually in the ballpark. But then made sure we understood that there is still a chance our baby could die and have other issues. I asked him about our chances of being home by Christmas—he said they were fair.
So, I am sure I have left MANY things out—it is hard to condense everything—so if you have any questions, please ask. Thank you so much for all of your prayers—please continue to pray for our baby boy!