Dr. Kays to the Rescue!

At 3:00pm it was finally time to meet with Dr. Kays.  We had been reading all about him for weeks and we were so impressed by his dedication to CDH.  He is genuinely passionate about this defect and has devoted his life to helping children affected by it before, during, and after birth.  People travel from all over the world for his expertise, so we were very excited that he was taking the time to meet with us, review Makenna's case, answer questions, and create a plan of action.

He began the appointment by teaching us all about CDH to ensure we were up-to-speed on the defect.  He told us a lot of what we already knew and some new information as well.   Next, he went over his findings from the ultrasounds and the MRI.  The MRI was remarkably detailed and showed that there is actually more in her chest cavity than we originally thought (all of her intestines, her colon, and maybe a very small part of liver--hard to tell).  Due to the fact that all of this stuff is taking up so much space in the right side of her chest, it is pushing her heart (normally in the center) over to the left.  Her heart is in great shape as far as they can tell; however, because it is being pushed to the left, it also limits the left lung from being able to develop normally as well.   He was able to determine from the lung-to-head ratio that her "good lung" (the left lung) is about 85% developed, but her right lung is not visible simply due to all of the intestines in her chest, so he doesn't know if that lung is developed or how developed it is. 

Next he discussed the spectrum (mild, moderate, severe) and what each of those looks like.  He explained that because Makenna's hernia is on the right side of her body (rare), she is automatically classified as at least a "moderate" case.  This wasn't exactly what we wanted to hear, but he went on to say that as far as right-sided hernias go, he would consider hers "mild" because her liver is all or mostly all "down" (not in the hole). 

After all of that was out of the way he discussed his plan of action for her. He explained that he would be present at the delivery and would oversee her care immediately from the moment she is born.  He will be the only person making decisions regarding her care during her entire stay and he will be on-call to make decisions 24/7 until she goes home, even if he is at home or on vacation.  Once she goes home he will also follow her with check-ups until she is 18!  Talk about going above and beyond! 

Next it was time for him to answer our three burning questions:  "What are her chances of survival?" "What is the chance that she will need ecmo?" and "How long should we expect to be in Gainesville?"

Thankfully it was good news all around!  He said with his care he feels her chance of survival is around 96% and he felt her chance of needing ECMO was only about 10%!  Talk about a huge sigh of relief!  He said she would receive surgery 2 to 5 days after birth and if everything goes how he expects it to go, she should be able to come home after "22  1/2 days."  This means we should have her home by her first Thanksgiving!!  How awesome would that be?!?! <3

We ended the visit with a tour of the NICU, which was very impressive!  They have two rooms dedicated specifically to CDH babies.  The rooms are set up with every machine CDH babies may need and can even be transferred into a sterile operating room (eliminating the need to do risky/unnecessary transfers to a different floor for surgery.)  They also said that she will have a nurse all to herself around the clock until she is stabilized and will share a nurse with one other baby after that.   We will be able to visit 24 hours a day and we can even supply our own natural(disposable) diapers and breast milk for her. 

I can honestly say that with as "at peace" as I felt before, I feel one million times more at peace now! All of our questions were answered, the answers were positive, Dr. Kays is incredible, and I know Shands is going to be the perfect place for our baby girl! 

Oh and the coordinator even offered to let Sadie stay at her house if we can't find a place in Gainesville that allows us to have dogs.  Wow.  Just wow. 

Thank you all for your continued prayers, love, and support.  We are so blessed!