This is Dan writing for us both. We went to UNC today for our first meetings with them and to have a level II Ultrasound. The difference between our experiences with them and Duke have been night and day! We were cared for, respected, and treated with dignity. They have a patient care coordinator who will walk with us through the entire process, setting up appointments, visits, consults, etc. basically she does all the running around work that you might normally have to do. This is great given the gravity of what has to be dealt with already.
Today was more difficult than we had thought it would be but better than last Monday, hearing this for the first time. To hear the prognosis for our baby a second time was not an easy thing, and realizing the decisions that need to be made makes it even more trying. We are weary (already-it seems to soon), mad, confused, hopeful, hopeless, faithful, faithless, excited, afraid all at the same time. The road ahead is so uncertain and to be honest the next 10 weeks comes at us like a mountain. Please understand we say all this while holding dearly to the one constant in this situation, Christ and His goodness toward us through the cross! Honestly though that is really the one thing that feels real to me right now, and there are times when the reality of this tries to drown that out as well.
We had the most amazing ultrasound tech, so kind and helpful to explain what we were seeing. This was the best (in terms of things being clear and identifiable) ultrasound we have had yet. the trouble with that is that we saw all the same things and more.The Ultrasound revealed that our baby was around 25 weeks developmentally and Casey is 29 weeks pregnant, so this is not good. There is also more problems with the spine than we knew. Maybe due to the omphalocele or due to a spinal defect the baby’s spine is not good in the lower half of the body, They are not ruling out Spinal Bifida but cannot confirm it either. It appears that the Omphalocele is very large (containing all of the liver the bowels, and now the bladder as well). Blood flow monitoring seemed to show that blood was only flowing to the left ventricle of the heart, which possibly confirms the prior heart diagnosis (double outlet right ventricle- no right ventricle, with a hypoplastic left ventricle) this is very serious. So those are all the things that we are hearing, and added up together make it highly likely that the baby has Trisomy 18 or 13. For now this is unconfirmed because we are opting out of doing an amnio for now and praying for the wisdom of wether or not we should have one a lot closer to my due date.
Please continue to pray for healing as we believe God can and desires us to believe in His power to do so-and we do! I want to make it clear that it is no cop out for us to say that Christ has provided the ultimate healing for our baby on the Cross! We believe this and without this truth none of us has any hope beyond this life. God may choose to heal this baby now and this will surely glorify His name. But he may not heal our baby here and choose to bring she or he home and we through much pain will glorify his name. Everything God does is for His glory! I believe that and have found that to be both joy giving and painful at the same time-I have never been here before. Pray for continued wisdom as we proceed forth with difficult ethical decisions and walk through this evolving process. Pray for our physical strength and management of our finances as we go back and forth to UNC and to specialist after specialist. Pray for our personal holiness and reliance upon being filled with His spirit to walk this road.
Casey and I are really finding it hard to balance our fears and hopes. It brings out anger and frustration that we can’t even have the normal new Mom and Dad concerns like “wow our life is sure changing, how will we do with a baby in the home?”. This is an emotional roller-coaster and sometimes it feels like a little much. I am thankful that what I feel is not always reality and that God’s Word speaks truth into the weary heart. He must and will help us through this time…We are thankful for so many who have loved us and served us with His Word. Keep Praying!
Dan and Casey
“He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry
them in His bosom, And gently lead those who are with young.” Isaiah 40:11