Long Week and a Few Updates

This week was incredibly long. I wanted to write this post to update last night, but I am pretty sure I feel asleep somwhere around 7:30. Between several appointments, Back-to-School Nights, and work, Spencer and I are both exhausted.

I finally was able to talk to the doctor from CHOP yesterday afternoon, about 2 hours before our meeting with the hospital staff at Shady Grove. She said what I had been anticipating... that after reviewing the fetal MRI and our most recent ultrasound images, she agreed with the reports from Children's and from our maternal-fetal medicine group. She explained that she believes that this is more than just a giant omphalocele, and that the combination of anomalies that Isaac displays leads her to believe that he has what is called limb-body wall complex (LBWC). This is consistent what the doctor from the maternal-fetal medicine group mentioned on Tuesday. Both of them said that this was in no way a formal diagnosis, but rather their best hypothesis at this time since Isaac displays some, but not all, of the characteristics of LBWC.

We then met with folks at Shady Grove Hospital yesterday afternoon. The chief of neonatology was there, along with a charge NICU nurse, a labor and delivery nurse, and a social worker. We were able to ask more questions, discuss our birth plan, and take a short tour of the maternity ward. The neonatologist doesn't necessarily agree with the LBWC theory, but didn't really disagree either. Basically, she said we need to wait until Isaac is born to really see. She also has a background in genetics, so she will be a great person for us to consult with regarding follow up testing that Spencer and I may need to do to see if we're carriers of something that may put us at risk for something like this again. Clearly, there's still a lot left to find out and determine.

The nurses and social worker were absolutely wonderful and accommodating. Typically, after a c-section, you recover in a sort of triage-like area, with stretchers seperated by curtains. However, there is one private room across from that area that they will reserve for me to recover in and will wheel in a portable EKG machine (since I will need to be monitored after surgery). This way, we can have some alone time with Isaac as soon as possible, as both the doctor from CHOP and the neonatologist are predicting that his time on Earth will last somewhere in the realm of minutes, possibly an hour. Regardless, we're getting the sense it will be very short.

I gave the team the potential dates of my c-section, and the neonatologist recommended doing it on October 16th since it is a Thursday. She said that the pathologist should be able to do an autopsy that Friday. If I had my c-section on the 17th, then that would have to wait until Monday. The date still has yet to be confirmed, though.

They are also reserving an extra-large room in their maternity ward for me. There are two rooms like this, one at the end of each hall. They are also much more spacious, and are a bit more quiet since they're out of the way. We've also been told that we'll have no restrictions on visiting hours or number of visitors so that they can leave those decisions up to us. All in all, I think everyone is on the same page with our birth plan, and I feel very confident in the care that Spencer and I, and sweet little Isaac, will receive.

Please continue to pray for us as mid-October approaches. Spencer and I both feel the burden of this becoming increasingly more heavy, and we are very aware that the hardest part of all this is still ahead of us, despite the long road the past 4 1/2 months have been. I am also becoming increasingly more anxious about my c-section, mostly because of how "complicated" the doctors are saying it is going to be because of Isaac's positioning, the fact that the omphalocele is adhered to me, and how short the umbilical cord is. And then of course, the fact that it is major surgery doesn't thrill me either, seeing as I have never broken a bone or even had stitches.

We also appreciate your prayers for Isaac, that whlie he is with us he wouldn't be in a lot of pain, and that he would just feel so incredibly loved.