It has been a long and stressful week. We took a trip to Riley and IU Hospital in Indianapolis on Monday, May 9th. We also took a trip to University of Michigan Hospital Ann Arbor on Thursday May 12th. During both trips we were able to have tremendous help from my parents and sister who were able to watch Cole, take him to the sitters as well as paint the nursery for Baby Reed. We have now decided that we will be delivering our baby boy at the University of Michigan Ann Arbor. The coordination and communication from the hospital in Michigan was absolutely amazing! The best part was meeting the Pediatric Surgeon, Dr. Mychaliska. He sat with us for two hours explaining every bit of detail on how he would help our son beat the odds of survival. He has given us a survival rate of at least 80% for our son. He gave us more information on ECMO. ECMO stands for Extracorporeal Membrane Oxygenation. ECMO is a special procedure that allows sick or injured lungs the opportunity to rest and get better. When lungs are sick or injured they are unable to provide oxygen and remove carbon dioxide (a waste product) as they normally would. ECMO is similar to the heart-lung bypass used in the operating room but is used for longer periods of time.
At both hospitals I had an ultrasound, genetic counseling, a fetal ECHO (a scan of baby’s heart), and a fetal MRI. Ultrasounds looked good and showed no other abnormalities other than the hernia. The babies’ stomach, some of his intestines and the tip of his colon are in his chest. The hernia is left-sided which means that his heart has shifted into the wrong place and all of this puts pressure on his lungs which makes them small and underdeveloped. Babies who have CDH suffer from small and underdeveloped lungs. This condition is referred to as pulmonary hypoplasia. Although hypoplastic lungs are the underlying threat to survival, the critical nature of the condition at birth is due to pulmonary hypertension or persistent pulmonary hypertension in newborns (PPHN) as a result of the underdeveloped lungs. Both hospitals concluded that the baby has a LHR (lung-to-head-ratio) of 1.6 which gives a better chance of survival. A sonographic lung-to-head ratio (LHR) is used to assess the baby's lung size compared to his gestational age. This number assists the team in determining the severity of lung problems anticipated for the baby.
The plan now is to continue to have prenatal care in town with Dr. Wheeler and make one or two more visits to Michigan to continue with testing as we get closer to my due date which is August 18th. I will have another series of test around week 33 in Michigan and they will then determine when I will move to make sure I am in town for my induction which will be planned for week 38. I do not want to go into labor in Fort Wayne. My name will be on the waiting list at Ronald McDonald House in Ann Arbor and I will check into their hotel until I can get into a room at the RMD House. I do not know how long I will have to stay there as this depends on how well our son does after he is born. No matter what numbers they give us for survival we will have to pray that each day he is with us that he continues to want to fight so that he can come home with us.
We want to thank everyone for their continuous support and kind words. Each day has become a struggle but with your prayers and support they become easier. Greg and I want to especially thank our friends, The Bakers (Brian and Carrie). They have been a lifesaver through all of this. We know the Bakers because their son was diagnosed with CDH in utero and we attended their benefit over five years ago. They have helped us with all of the questions and concerns we have had. They are also holding a benefit for us on Friday, July 8th at the Shiloh. The benefit will be a huge support to us. Thank you again everyone for all that you have done!
