So we got pencilled in for the clinical trial today. We are going to be placed at The Children's Hospital of Philadelphia. As of now we are temporarily planning on flying out on Sunday, July 11th and then we will undergo the three day evaluation process that Monday, Tuesday, and Wednesday. The evaluation will basically consist of having more ultrasounds, MRI's, echo cardiograms, and meeting with the neurosurgeon, nicu docs, social workers, ob's, etc... to talk about the risks, benefits, and prognosis. During the third day we will find out if we still qualify and then we will be given the opportunity to make our decision. If we decide to participate in the trial we will then be randomized and find out if we are chosen for the prenatal or postnatal surgery. If we are selected for the prenatal surgery, the surgery will be on Friday, July 16th. If we are chosen for the postnatal surgery (control group) we will fly home and then return at 37 weeks (around beginning of October) to have a c-section so that the baby can undergo the closure surgery and possible shunt placement there. If we are chosen for the prenatal surgery I will be staying in Philadelphia and be closely monitored until the baby is born. This is a HUGE commitment so we are hoping we can come to a decision after the evaluation. Again, one that is best for our family and our future:) Thanks again for checking in on us and I will update when everything is finalized!
We wish everyone a very happy fourth of July. We are planning on relaxing and enjoying our long weekend together with family and friends out at the lake!!
Grayden's 9th Birthday!
4 days ago