Hope Lives Here, Part 2

The second part of our day at CHOP was meeting with doctors for consultations.  Our schedule indicated that we were to have a consult with an MFM - maternal fetal medicine doctor, and then with Dr. Bernard Kaplan, the pediatric nephrologist, but we actually ended up meeting with both at the same time and with the geneticist.  Dr. Julie Moldenhauer, the MFM  began speaking with us first about Stephen's lungs and heart.  Most of what she told us we had heard from the other two MFMs, but she also told us some new information about his heart.  The ECHMO revealed that there is a some fluid now around his heart.  It's likely caused by the space issues in his chest and abdomen.  Because the kidneys are taking up so much room, it's pushing the diaphragm up and causing some fluid to gather around the heart.  And Dr. Moldenhauer explained to us that in normal babies, you should be able to fit 5 hearts in the chest cavity.  In Stephen's case, you would only be able to fit 2-3 hearts.  This is another function of the compression of the chest cavity.  But the good news with the heart is that it is functioning exactly as it should.  The four champers, valves, and arteries are all working great.

The other "new" news we heard from Dr. Moldenhauer was about Stephen's limbs being constricted.  I think I might have described before that without amniotic fluid, Stephen is kind of shrink-wrapped by the placenta.  That is what is constricting some of his chest growth.  And because he's "shrink-wrapped by the placenta, he's really tucked in there very tight and his movements are more sharp and it's not as easy for him to move his arms and legs.  Because of that, he might require some extra attention once he's born.  Hopefully that will only be physical therapy, but it could be surgery.

As Dr. Mondenhauer was explaining some of these things to us, Dr. Kaplan came in and the conversation turned to focus on his piece of the puzzle.  Dr. Kaplan knew that we had already met with a nephrologist, so he seemed a bit skeptical as to why we were at CHOP.  Which at first set me on edge on a little.  His first questions to us where:  1) what did the nephrologist already tell us/what do we already know, 2) why were we there, 3) what were our occupations, 4) what were our ages, and 5) do we have other children.  All are fair questions, but right off the bat, I got a little worried.  Basically we told Dr. Kaplan that while we had gotten great information from Dr. Kher from Children's National, we were still looking for a place that would give us comprehensive care for both myself and Stephen and that had seen cases similar and patients similar to us.  After that Dr. Kaplan seemed to relax his questioning a bit and told us about all sorts of different families and children he had treated over the years.  All were successful stories except for one.

So our conversation continued about dialysis, transplants, quality of life, and what would happen in the NICU.  And by the end of our conversation, I think all 5 of us were on the same page.  We know that the road could long and bumpy through the NICU, dialysis, and transplantation, but we also know don't know what will happen.  Dr. Kaplan talking about different cases were he swore the baby would need dialysis right away and then in the end didn't even need dialysis.  It was so great meeting with doctors who told us honestly they didn't know what would happen after Stephen was born, but no matter what happened, the team of doctor's could handle it and would make decisions based on what Bill and I wanted and what we thought was best for our baby in that moment.

We also chatted briefly about our choice to either relocate and deliver at CHOP or to stay here at home.  The decision is definitely a really tough one.  It will be hard for us to be away from home for so long; both emotionally and financially, but we are 110% sure that CHOP will give Stephen and I the best care.  They do have social workers that will work with us to help set us up either at the Ronald McDonald house or in an apartment near by.  And its not only hard for Bill and I, but it's also a burden on our families.  So we are going to try our best to keep our thoughts about CHOP in the back of our minds when we go to Fairfax this coming week to meet with a pediatric nephrologist.  We know that if Fairfax can offer us the same level of care and have dealt with cases like ours in the past, then we should choose Fairfax over CHOP, so that we have the comfort of home and our dog, and family and friends nearby. 

But CHOP is going to be hard to beat!!!  It was an amazing place and I can totally understand why they have chosen the slogan, "Hope Lives Here."  Each and every person we came across that day was friendly, supportive, and exuded the confidence (in a good way) that they can help us and give Stephen the best chance at survival.  And that's all Bill and I have been looking for. 

Our goal is that by Thanksgiving, we will have made the decision where to deliver.  If we decide on CHOP, I'll go every two weeks for a check-up with the high-risk OB/GYNs, we'll get a tour of the dialysis unit to have a better understanding of what it all entails, meet with the neonatologists, and then we would move to Philadelphia around Christmas to wait out Stephen's arrival.  It sounds like a lot, but we're excited CHOP turned out to be everything we had hoped it would be!

XOXO
Lindsey