At our 20 week ultrasound, we were thrilled to find out that we were expecting a little girl. We also found out that she has something called congenital diaphragmatic hernia (CDH). The cause of CDH is unknown, but what they know is that it occurs around weeks 6-10 in the pregnancy when the diaphragm is forming. The diaphragm doesn't complete the way it's supposed to and the baby is left with a hole, or hernia, in their diaphragm. Because the pressure in our lower cavity is greater than the upper, some of the organs from her lower cavity move through the hole into her chest. Ultrasounds and an MRI have confirmed that Kambry's stomach, bowels, intestines, and part of her liver are in her chest. As you can imagine, these organs take up much of her chest, shifting her lungs and heart to the right side. This restricts the growth of her lungs - significantly on the left and moderately on the ride. Thankfully, Kambry's heart is strong and looks perfect, and testing has confirmed that she has no other congenital anomalies or chromosomal disorders. This helps her prognosis a lot. However, because her lungs haven't been able to develop the way they should, there is a chance she may need a machine to help oxygenate her blood. This machine, called ECMO, is not available in Fargo so we were told we would not be able to deliver her here. After much research and prayer, Lon and I made the decision to deliver her in Denver, The Colorado Children's Hospital has a great CDH team and some of the highest CDH survival rates in the nation. Once the decision was made, everything seemed to fall into place - leaving us with a much needed feeling of peace.
Around 25 weeks we flew down to Denver to meet the team that will work on Kambry. Everyone we met was amazing and we are so happy with our decision to put Kambry in their hands. She received a good prognosis from them and they educated us on exactly what will happen after she is born. Kambry will be closely monitored in the NICU until she is stable enough for surgery which they expect will be around 2 weeks of age. During surgery they will move all of her organs back to her abdomen and repair the hernia. They estimate that she will be in the hospital 2 months if everything goes as planned. There's a chance it could be less, but also a chance we could be there much longer. It all depends on how she responds to the treatments and surgery.
So for right now, I am going to two appointments a week at Sanford in Fargo -- non-stress tests to monitor her heart rate and biophysical profiles to make sure she is practicing breathing, moving well, and keeping a safe amount of fluid around her. We also have bi-weekly ultrasounds to watch her growth. Right now she is in the 50th percentile for weight. At 35 weeks I will be relocating to Denver in case I were to go into labor early, and so the team can complete their follow-up tests to see if anything has changed. At our last appointment, they told us if everything goes as planned, I will be induced at 38 weeks (around July 14th). This will ensure that the entire team will be ready when she arrives. Asher will be traveling to Denver with me and we will be staying with my godmother Judy. Lon will be joining us closer to induction time.
Lon and I have also been very blessed to have gotten in contact with another family who just went through this same journey. They have truly been an answer to our prayers and helped us to stay positive and keep faith in God. They have answered countless questions at all hours of the day and can understand this whole emotional roller coaster in a way that no one else can. THANK YOU Doug and Mandy!
If you want to know more about CDH, Children's Hospital of Philadelphia has a great website. Here is the link:
I would discourage you from looking at other non-medical websites as they can get you really down about the situation - trust us!
Thank you all for your love, support, prayers, and encouragement! Lon and I are overwhelmed by all of the amazing people we have in our lives. We couldn't do this without each and every one of you! Please keep the prayers coming! Feel free to call, text, email, or Facebook message Lon and I anytime. We will do our best to keep you updated on the blog as we continue our journey. We love you all!!
Lon, Heidi, Asher, and baby Kambry