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At first we were hesitant to share our story on social media. After talking to a friend who went through her own battle with medical issues, she gave me some advice that I haven't forgotten. She said "Don't be afraid to share your story with others. Sharing your story opens up the door for hundreds of people to pray for you, and never under estimate the power of prayer". We decided to take her advice and share with everyone the story of our sweet baby girl.
As most of you probably know, Barrett and I are expecting our first child this August. On April 7th, we had our routine 2nd trimester ultrasound that would confirm the gender. We had been given an 80% guess at our previous ultrasound that is was a girl. We already had a named picked out...Reese Taylor Frascona.
The morning came of our appointment and we were so excited! I had held off on buying anything until we knew for sure it was a girl and I think Barrett was still hanging on to the 20% chance that it could be a boy. The ultrasound tech confirmed almost immediately that it was indeed a GIRL! We were ecstatic! A few minutes later the tech grew pretty quiet and kept scanning for what seemed like forever. She quietly stood up to let us know she was going to get doctor so we could go over the images. Before she walked out she looked at us and said "I did want to tell you guys that I did see something concerning with the stomach and I don't want you to be taken off guard when he comes in and starts talking about it".
Immediately my heart dropped.
The doctor came in quickly after and began going over the images with us. He showed us her head, heart, hands, feet, arms, and legs...all normal. Then he got to the stomach. He told us he believed that Reese had a birth defect called Congenital Diaphragmatic Hernia. If you are like me and Barrett, you probably have never even heard of this. Basically, the diaphragm (the muscle that separates the chest and abdominal cavity) did not fully close while developing. The opening in the diaphragm can allow the organs in the abdominal cavity to migrate into the chest cavity crowding the heart and lungs. The hernia itself is not a major issue, but the under development of the lungs is where the main concern lies. He informed us I would have to deliver out of town because we do not have a NICU here in Tallahassee that provides the level of care we will need. Once she is born, she may not be able to breathe on her own. When she is stable enough, most likely with in the first week of her short life, she will have surgery to correct the hernia. We will then be in the NICU until she is healthy enough to go home. Some of these babies have poor prognosis's and even fatal outcomes. The doctor assured us it was good we caught it early so we can plan and monitor throughout the pregnancy.
We were in complete and total shock. We could barely process what he was saying, let alone think of any questions to ask at the time. He told us very little information about our case specifically. We felt rushed, uninformed, and defeated when we left. Of course, the first thing we did was turn to the internet for answers. The internet can be a very useful and helpful thing but in this case it was terrifying. We were seeing statistics and survival rates as low as 50%. We were crushed. We turned to family and close friends for support for the next couple of days.
We were given the option between two hospitals, Shands in Gainesville and All Children's in St. Petersburg. We were going to meeting with doctors from both and then make a decision about where we were going to stay for the remainder of the pregnancy and for delivery and post delivery care.
After what seemed like forever, but was really on 3 business days, I got a call from the sweetest nurse at Shands. We had an appointment the following Wednesday to meet with a Pediatric Cardiologist and a Maternal- fetal Specialist there.
On April 19th, appointment day had arrived and we were finally going to get the answers and information we desperately wanted. We first met with the Pediatric Cardiologist. After an hour long ultrasound and hundreds of images taken of her heart, it was time to sit down and review them. The doctor sat down with us and told us that she did see a few areas of concern that she wanted to monitor. These were common issues in CDH patients and could possibly fix themselves as the pregnancy progressed. But for now, structurally, everything looked normal with her heart. (YAY!) I don't think we will take the word "normal" for granted ever again after this experience.
After a two and half hour appointment with them we were able to run and get a quick lunch and call our families and tell them about the information we had gotten.
That afternoon, we met with the maternal- fetal specialist. This was the appointment that was going to answer most of the questions we had. If you know me at all, you know I am a complete planner. The doctor probably thought I was crazy when I walked in with a binder (yes, an actual binder) full of information, and questions. But actually, he was the exact opposite. He was eager to answer any and all questions we had. After another hour long ultrasound, the doctor sat down with us and went over everything. He informed us that Reese did indeed have a left sided diaphragmatic hernia, which is the most common. Right now, he is calling this a moderate case on the severity scale. Her stomach and part of her bowel have herniated into the chest cavity and pushed her heart over to the right side. The liver is still in the abdominal cavity which is excellent news. When the liver is up, this usually results in a more severe case. Her lung to head ratio was 1.1. Anything over 1 is considerate good!
We were finally able to breath a sigh of relief. Lack of information has been the most trying part and to finally have some answers was so relieving.
A couple weeks later it was time to meet with the doctor at All Children's in St. Petersburg. Throughout our research on CDH, this one particular doctor's name just kept coming up, Dr. Kays. Everything that we had read about him said that he was the go to guy for this particular defect. He had treated and saved hundreds of babies with CDH throughout his years of practice. He was at Shands for over 20 years and had recently moved to All Children's in 2016. Barrett was especially happy about this. If you know Barrett at all, the thought of having his daughter born in Gainesville just didn't sit well with him. :):) (Go Noles!)
So on Thursday, May 11, we made a day trip to St. Pete to meet Dr. David Kays, and I am so glad we did. He spent over an hour with us explaining the in and outs of CDH. He reviewed the scans and ultrasounds they did at Shands and went into Reese's case specifically. He agreed with what they had seen but still wanted to do his own testing. He was so optimistic, I can't begin to explain how relieved he made us feel. He gave Reese a 96% survival rate and only a 20% chance of having to be put on ECMO (heart-lung bypass) which we want to avoid. (YAY AGAIN!!)
His nurse Joy was an absolute angel. She took us on a tour of the NICU where we met 3 families and 3 sweet little babies, 2 of which were being discharged the next day. I didn't know that we needed to see that until we did. It was hard seeing such a tiny baby hooked up to so much equipment but to see how healthy and normal they looked when they were going home gave us so much hope.
After we left there we knew that All Children's was the place for us. We will go back on May 24th and 25th for a follow up. Dr. Kays and his team will conduct all of their own scans and tests while we are there, in addition to an MRI which will give us a much clearer view of her lung growth.
From here on out it will be lots of appointments and preparation but we know we are in the best hands possible. We know God placed this special baby girl in our lives for a reason. He never gives us more than we can handle and we are confident in Him, our doctors, and our family and friends to get us through this time. We will keep everyone updated through this site after each of our monthly visits. We love you all and appreciate all the kind words and prayers we have received so far.
***Donations made through this site go directly to Caring Bridge Org to keep the site running, not to the family or Reese's Fund for medical bills. We were not expecting so many people to reach out to us about donating and realized the donation button at the bottom can be misleading. If you are interested in sending a donation directly to the family, there will be a Go Fund Me site set up in the near future and a few fundraisers we will be doing this summer! For now your prayers and well wishes are more than enough.