This morning after a restless night of sleep Matt and I got up at 5 am and headed to Winston-Salem, NC for a second opinion at Wake Forest's Maternal Fetal Medicine center. We were hopeful that they would have a little more positive outlook on the situation than it seemed UVA did.
The appointment started out with an ultrasound where the sonographer measured Omara's vital organs and limbs (just like they had done at UVA). To Matt & I the tumor didn't look much larger so that was a relief in the moment. The sonographer put my mind at further ease when she told me that Omi's bladder and stomach were both full, this means that she is still able to swallow amniotic fluid. One of the greatest risks right now to her is that her throat would be obstructed due to the tumor and she would not be able to get amniotic fluid into her. When this happens the fluid builds up around the baby and causes something called 'hydrops'. This would mean almost certain death for her so we are monitoring this very closely.
I was pretty much hooked up to the ultrasound for the duration of the appointment. After the sonographer was finished the doctor came in and continued to look around at everything. They measured the tumor and it had grown around a centimeter. We started to ask some of the same questions we had asked at UVA, but this time they were accompanied with more detailed questions thanks to the hours we had spent researching everything we could. The two doctors seemed a lot more optimistic than they did at UVA, which got us feeling excited. Finally a medical professional in the field of fetal medicine was telling US that there is a chance with OUR baby.
We asked how often they had seen a condition like this. The one doctor said she had never seen it before and the other said she sees maybe one a year. These numbers didn't have me feeling fully confident in their ability to handle our case at their facility. I am sure that they are incredibly skilled physicians, but Matt and I want the most experienced team working on our daughter. We asked about the Children's Hospital of Philadelphia and they agreed that we would be better suited there and offered to refer us. I am supposed to hear from them later today or tomorrow to set up an appointment. We will be skipping the MRI at UVA and just handling everything at CHOP (Children's Hospital of Philadelphia) for the time being. After an initial appointment we may be able to monitor closer to home until delivery.
We left the appointment feeling so hopeful and positive. Happiness wasn't something I had felt in the last few days so it was good to just smile again. On the drive home we called our parents and told them the good news - we are going to see the experts!
After getting home Matt and I both laid down to get some rest, but my brain was still churning. I had to get this out - so here I am writing about it. A little ways into starting this entry I got a call from my OB. He said he had just talked to the doctors from Wake Forest and UVA. He said they all agreed the tumor was growing pretty rapidly and that we need to get to Philadelphia as soon as possible. And here goes the rollercoaster.
I'm not sure what the next few months are going to hold in store for us, but we are preparing for the worst and hoping for the best. One of the possibilities is that they will do an in-utero surgery on her to de-bulk or try to remove the tumor. This is very dangerous because it could result in pre-term labor and her being delivered before she is able to sustain life. Another possibility is that the tumor will stop growing so rapidly and we will be able to wait to operate on her until after delivery closer to term - this is the one we are hoping & praying for!
Thank you everyone for your amazing outpouring of love and support we have received. This isn't a battle we can face alone and it is such a blessing to know that we have people on our side who want to see her get here safely. Please keep continuing to pray for Omara <3