Staying Close to Home

Sorry it's been so long since I posted about what's happening with Stephen.  We had one crazy week and then had a fun-filled weekend full of tailgating at Fed-Ex field (Penn State was in town to play Indiana) and spending time with my parent's, sister, brother-in-law, and niece.  But I really wanted to let you all know what happened this past week.

This past Thursday, we met with Dr. Alfred Khoury at Fairfax hospital.  Dr. Khoury is a perinatologist and high right OB/GYN.  He's the first perinatologist we've met with that actually delivers babies, so this was as much an appointment for Stephen as it was for me.  I was bit on edge going into this appointment because we knew that if we didn' like Dr. Khoury, we were going to CHOP, and setting up the appointment with Dr. Khoury and Dr. Baker, the neonatologist at Fairfax was far from easy.  So already I was a little skeptical as to whether or not we were going to get comprehensive coordinated care at Fairfax. 

Luckily, a few minutes into our appointment, the nurse called in Kelly Gallo, the nurse coordinator at the Center for Coordinated Fetal Care at the hospital and all  my concerns with getting the appointments set-up and everything else was squashed.  So that was really positive.  She actually ended up calling me an hour after our appointment with Dr. Khoury ended with an appointment time and day for Dr. Baker, and will take us on a tour of the NICU and labor and deliver area that same day.  Bonus!!

During the appointment with Dr. Khoury, they did another sonogram which Dr. Khoury partially sat in on.  He wanted to make sure he got a lot of pictures and measurements of Stephen's belly and abdomen.  The appointment with Khoury did start out a little rough though.  Like all the other physicians, he had was obligated to give us "bottom line."  The discussion about how sick Stephen is and how underdeveloped his lungs are and will be when he's born and everything else we have heard.  So then we had to have the discussion about how we understand the severity of our situation, but we are looking for a team of doctors that will be positive and help to provide the best care possible for our baby.  After getting past that initial conversation, Dr. Khoury agreed that he was on board to do whatever Billy and I felt was best for Stephen and he would do whatever was best for my health.  He agreed and said that this was the last time we would have this conversation.  That going forward, our appointments and conversations would all be focused on what we were going to do for mine and Stephen's care.

We continued our conversation focusing on how and when we are going to bring Stephen into this world.  Dr. Khoury's main concern related to my health and Stephen's birth is the size of his belly.  Because his kidney's are so enlarged, his abdomen is also enlarged, coupled with no amniotic fluid, is going to make it extremely difficult to have a vaginal birth.  So we will probably schedule a C-section for around the 10th of January, four days shy of my true due date.  And then hope and pray that his belly hasn't gotten so big that they have to do a vertical incision instead of a low horizontal incision.  Dr. Khoury obviously will do and wants to do everything to preserve my uterus for future pregnancies, but we might not have any choice.  So we'll just watch Stephen and his growth from now until January every two weeks and then every week as we get closer.

We did get some really sad news on Thursday though.  If Stephen doesn't live until January 10th, which is a reality that we face, then I will have to continue to carry him until his little abdomen can shrink enough that I can deliver him vaginally.  It's impossible to think about, so I try not too, but it's also impossible not to.  Each time we have a doctor's appointment it's a double edged sword.  On one hand, we usually get some fairly positive news about receiving care for Stephen, but on the other hand, each doctor must tell us how bad our little guy's chance at survival is.  And each time we leave an appointment we're sad and upset and can't understand why this is happening to us and why life is so unfair.  The worst part for me is that as we get closer and closer to the due date, I can't keep thinking how what should be the happiest day of our lives is probably going to be the worst day of our lives.  Nothing will ever be as bad as what we might face in 7 short weeks.  And nothing short of a miracle can help us.

But the best thing that came out of last week was making the decision that we're going to stay here at home and have the baby at Fairfax.  We feel confident that we are going to get world-class care for Stephen at Fairfax and that traveling to CHOP probably won't change the outcome.  Although I will miss the people we met at CHOP and the amazing facilities they had, it's important for us to be close to family and not have the emotional and financial stress of relocating.  Plus now that I know that we have someone like Kelly there to support us and help us with anything we may need, a huge weight has been lifted off my shoulders.

Next week is a bye week for Team Schwartz (we have no appointments next week).  And then we'll get to see Stephen again at Dr. Khoury's office on December 1st and finally with Dr. Baker on December 3rd.  I'm just really looking forward to a tour of the hospital and doing something that normal couples all do before their baby arrives!

I hope everyone had a great weekend and I'll catch-up next week before Turkey Day!!