Sunday, April 14, 2013

A Letter to my Family & Friends

Last week was full of overwhelming moments... some being quite possibly the best and others being most definitely the worst moments of my life. I'll start from the beginning.

On Monday morning, Kiel and I had our 2nd trimester screen. This screening is basically an ultrasound that evaluates the baby's organs, growth, and also identifies the baby's sex. Everything about our ultrasound seemed very routine. Towards the end, we discovered that little Baby Drake was a boy. I cannot describe the overwhelming high that consumed the two of us at that moment. Secretly, I knew it was a little man from the moment I peed on that stick. We finished the ultrasound, hugged and kissed, and sat patiently for the Maternal-Fetal Medicine Doc to come and speak with us, as they usually do.

Dr. Merriman was our doctor. She was absolutely fantastic. She was very direct, and explained right away that she was concerned about our little one's heart. From what she could tell, he had a defect. She then explained that often heart defects are associated with chromosomal abnormalities. She offered us options for further testing, to rule out chromosomal issues; such as Down's Syndrome etc. I talked to my OB/GYN and she encouraged me to move forward with an amniocentesis (A risky procedure where they insert a long needle into your abdomen and withdrawal amniotic fluid. They use the fluid to evaluate the babies chromosomes close up). I was absolutely scared to death to have the procedure, but any answers as to why this was happening would be comforting. I had the amnio that Monday afternoon.

On Wednesday, Kiel and I received a call from our genetics counselor claiming that the baby was negative for trisomy 13, 18, and 21. We were relieved to have ruled out these abnormalities, and it was comforting to know that if he had a heart condition, it was most likely isolated. Only one battle to fight. We get further results from the amnio on the 17th. We are very hopeful that everything comes back negative, and many of our physicians were optimistic that they would. 

On Friday, we went to AI to meet with a pediatric cardiologist. We had a 2D Echo done. The doctor was in the room during the entire study. Afterward, he took us into a private room and explained the results. Our little boy has a condition called Tricuspid Atresia. Basically, when his little heart was forming, at only 4 weeks of gestation, he never developed a tricuspid valve. It is nothing that Kiel or I could have prevented. One of those rare things, that just .. sometimes happens. The doctor explained, that he would most likely do completely fine in utero, and that my pregnancy, bearing no other problems, should go well. So far, he is growing just as he should.

 It is when he takes his very first breath, and his little heart has to stand on it's own, that he will need a lot of help. No matter what, he will be brought to AI immediately after birth. They will start him on medications, called prostaglandins, right away. He is facing up to three surgeries within the first 2-3 years of life. If all goes well, he won't need an operation directly after birth, but there is a possibility that he will. The second two surgeries are necessary. 

Kiel and I are beyond overwhelmed. To think, that just a week ago, I was concerned about breast feeding, nursery color, and baby clothes....and now look where we are. This condition is rare, 5 in every 100,000. I've thought over and over... why us, why him? But deep down, I truly believe that he will survive this. That we were chosen to be his parents, because we are strong enough to support him through it. It is going to be a long road. Our lives will be changed forever, and these next few years, will most likely be hell... but we are hopeful.

There is so much to say, so much to talk about... but I am honestly exhausted. I've gone over it all 100 times in my head. It's important for us to get back to a normal routine, to keep busy. We are going to need a lot of support. I feel very lucky to have family and friends like you all that I can share this with, and who I know will be there to help us get through these difficult times.

xoxo - L