Wednesday, December 23, 2009

The Journey Begins....

This is our very first post..hang in there with me, I'm still very new at this! I guess I should start at the beginning. Adam and I have been married for 3 years and we already have 2 wonderful boys but we always joked that there is too much testosterone in our house and we needed a little princess to even things up a little. I found out I was pregnant in August and we were very excited. Things were going very well. No morning sickness at all. That was HUGE for me because I was sick with Noah for MONTHS!!! My OB started me on daily blood sugar checks and eventually insulin pretty early because I had severe gestational diabetes with Noah. Because of that they decided to schedule me for several additional tests just for precautions. I had an anatomy US at 19 weeks and they said everything looked okay but they wanted me to come back because she was still a little small to be able to see what they wanted. I was very relieved because I AM A WORRIER...I try not to but its in my genes. We went on with our daily routines and I even joked that they were being "too cautious."

We went to the follow up US on November 30, 2009 and I never expected anything to be wrong. The US tech was chatty and very nice. I did notice that she got a little more quiet as we went along but I knew something was going on when she said she was going to get the doctor to take a look. The doctor came in and they scanned some more and then she sat down. I think I immediately started to cry before she even said a word...its never good when a doctor sits down to talk to you. She told us that Baylee has a left sided diaphragmatic hernia. I went blank after that and I really can't tell you exactly what she said. I do know she explained to us what that meant and answered some of our questions. I had never heard of CDH and I worked as a CNA on a Women and Children's Unit for almost 4 years. We left the hospital in a daze....I was a WRECK. I am so thankful for Adam, he truly was my rock that day. On the drive home we called our parents and tried to explain to them what CDH was based on what the doctor told us. We all were a little in denial about the seriousness of it all. Adam had to go back to work and he told me not to google CDH (he really knows me) but I did anyway. I really wish I would have listened. I am the type of person that craves information but what I found was very grim and made it even worse for me on that day. Thankfully I found several blogs of CDH babies who have survived despite their struggle.

From that day its been a blur. I had a fetal MRI (one of the worst experiences of my life!),met with our surgeon, had an ECHO,transferred to a high risk OB, had more US, and tried to prepare as much as we can. We have decided to deliver at Forsyth Medical Center, its where I had Noah, and then Baylee will be transferred to Brenner's Children's Hospital. It is part of Wake Forest University Baptist Medical Center. We met with Dr. P (the pediatric surgeon) and really felt comfortable with him. He called Baylee by her name instead of "the baby or the fetus".

At my US last week it looks like its her stomach and part of her small intestine that has migrated into her chest. We hope that it stays just that. We are hopeful but trying to be realistic. I am having a hard time dealing with the little things like I can't hold her or I have to stay at one hospital for 24 hours (CSection) and she'll only be a couple miles away but it really bothers me. I know there are far worse things for me to worry about with this but it hasn't hit me completely yet.

1 comment:

  1. I found your blog through the Breath of Hope boards. I will be praying for your family and Baylee! The CDH community is amazing and there is so much support there! I hope you have a good New Year's.