Saturday, March 26, 2011

CDH Awareness Day - March 31st

Each year we have tried to plan some event or collect donations for RMD in honor of CDH Awareness Day, but this year with Noah being sick these last few months, and time simply getting away from me, we haven't planned anything. Many families are sharing their child's personal journey during this time and I couldn't think of a better way to get the word out then this. It was, after all, someone else's story that helped us so very much at the beginning of ours...
After having a miscarriage 4 months before becoming pregnant again, we found out very early into this pregnancy that we were once again expecting. There was an extreme level of fear and anxiety as the weeks passed, praying to make it to the second trimester. On Dec 15th, 2006, at 15 weeks pregnant, we had an ultrasound that would forever change our lives. We were told that our baby had a possible diaphragmatic hernia and that it appeared that his stomach was in his chest cavity and his heart was pushed to the right. As many that are first diagnosed, we had never heard of CDH. We were referred to a specialist two hours away, but it was Friday and we would not be seen until Monday. Immediately, I went to the Internet and spent the first of many, many days, waiting for more answers as to what was wrong with our baby, whom we named that very weekend, Noah. We traveled to the specialist on Monday who confirmed our biggest fear with a level III ultrasound that our baby did indeed have a congenital diaphragmatic hernia. At this time, because it was so early, it was difficult to tell the severity of the defect and there were still more questions than answers. We learned that this defect affects 1 in 2500 babies, that the cause is unknown, and the most sobering fact that currently the survival rate was only 50%. CDH occurs when there is a defect or hole in the diaphragm allowing abdominal organs to float into the chest and severely restrict the growth and proper development of the lungs. We were told by this same Dr that CDH is sometimes part of a syndrome and that an amnio should be done immediately to rule this out and get a better feel for any other issues he might have. We were told that more follow up and testing would need to be done closer to 25 weeks and were sent on our way to wait for the results of the amnio. Another grueling 3 days and countless tearful prayers, we were told that Noah had no chromosome abnormalities. Our first victory. I will never forget that phone call...from that point on, we talked to who ever would listen, we sent hundreds of emails to surgeons all over the country, and began talking with other families affected by CDH. We did the only thing that we could at that point for our baby, arming ourselves with knowledge. We set up appts with three different hospitals in consideration of finding the best place for Noah's delivery. By this point we knew that babies born with CDH were incredibly sick at birth, many of which needed ECMO, a heart-lung bypass machine and could possibly endure a hospitalization of up two 3 months or more. The Dr's from the first hospital we went to told us that based on the test results Noah had a less than 2% chance of survival and he may possibly not even be offered treatment at all. Broken hearted, we spoke with another hospital that told us about the same news. Our third and final trip was to Ann Arbor Michigan at Mott Children's hospital. We were told at that time they see up to 25 babies each year with this diagnosis and have around a 65-80% survival rate. Based on testing here, they thought Noah had an excellent chance. This was it, this was were Noah would be born. Aside from close monitoring, I had a very uneventful and easy pregnancy. Finally a month before my due date, we moved into the Ronald Mcdonald House to wait for his arrival. It was crucial that I not go into labor at home, as it would be difficult if not impossible to transfer him to U of M in time. On June 7th, 2007, Noah was born, full term via c-secion at 8lbs 10oz. We heard him cry almost right away, which was music to our ears,because we were told he would not be able to cry due to his small lungs. This was our first sign of hope. He was immediately placed on a ventilator and after 24 hours in the NICU we were told that due to severe pulmonary hypertension (high blood pressure in the lungs) he was in very bad shape and would need ECMO immediately. Soon after, he was cannualated and put on bypass to let his heart and lungs rest. He remained on ECMO for 7 days. On his 14th day of life he had his diaphragm repair surgery in which they removed his stomach, spleen, intestines, and part of his liver from his chest cavity and put back into his abdominal cavity. They repaired his diaphragm and we were told that due to the amount of organs developing in his chest, it left very little room for his lungs to grow and develop. Not only were his lungs small, but they did not develop properly. The air sacs and blood vessels were not what they should be. The repair surgery itself, was probably the smallest part of his actual recovery. We were finally able to hold him for the very first time when he was three weeks old. He remained on a ventilator for 27 days until he was able to breathe on his own. After 6 weeks, he came home for the very first time...The day we thought may never come. Words can't even begin to describe this day.
So many CDH kiddos have feeding problems for a combination of reasons. Due to Noah's prolonged intubation, improper development of digestive organs and various other reasons, he still has issues with eating and remains about 75% tube fed. Since his initial discharge from birth he has been back in the hospital for several other surgeries and numerous illnesses both CDH and non-cdh related. He is delayed developmentally due his many hospitalization and surgeries, but is catching up each day. He has overcome so many obstacles and is growing, thriving, and bursting with personality as a happy, almost, 4-year-old.
The experience has forever changed our lives and there are hardly words for the emotions that have come along with this journey. The families that have come into our lives as a result are some of the greatest people we have ever met. I think there comes a point, maybe somewhere in a hospital waiting room, when you are sitting next to others sharing the same nightmare, that words are no longer necessary, and bonds that last a lifetime are formed. We have been abundantly blessed with a steady stream of support from our family and friends. I mean this wholeheartedly when I say, we couldn't have gotten through this without you. We hope that through Noah's story, we can reach other families affected or newly diagnosed with CDH. We hope to be a sounding board and support system along the way. As I said before, it was the stories and support of others that led us along the way and forever grateful. We are so very thankful that God chose us to be Noah's parents and that He has carried him through, hopefully, the most difficult years of his life. There are so many people behind his care over the years, his amazing surgeon, and his surgeons nurse, our OB and his staff, the countless therapists both here at home and at the feeding clinic, as well as his dr's and specialists. Along with all the other families fighting to spread awareness about this defect, we hope that some day there will be more funds for research that will ultimately lead to a cure. We hope that until then that families diagnosed will not feel alone, but will know of others out there, and be strengthened by their stories and be aware of all their options, including second (third, fourth, etc) opinions.
In honor of all the CDH kids both here and in heaven, please help to show your support on Congenital Diaphragmatic Hernia Awareness Day by wearing turquoise on March 31st and tell just one person why. Thank you again for all of your love, prayers, and support!!

Sunday, March 13, 2011

Blog slackin' again!

Noah did make it home after his 10-day hospital admission. I didn't even realize that I hadn't updated the blog! He has been improving greatly since then. Upon his return home, he was getting 14 doses of medication daily but he has now been switched over to a pulsing dose of Vancomyacin that he gets only every other day. The colitis/c-diff symptoms are well controlled and I hope to get a negative culture back from him in the next week. We followed up with Pulmonary and due to the damage to his lungs from the RSV, they recommended we increase the amount of inhaled steroids and keep him out of school for at least the next month to avoid another illness. We understand illness in inevitable, but the longer we can keep it at bay, the better! This will just give him a good chance to recover and get his strength back. We haven't seen any respiratory issues since he came home and hopefully we can keep it that way for awhile. It's hard to tell if the c-diff will rear it's ugly head again. We have been told that multiple recurrences of it may indicate future problems, but it's really hard to say. He will continue the antibiotics for several more weeks so hopefully it will be eradicated. Time will tell. There is something to be said for a healthy colon!
Zane and Elliot are doing great. Zane had baseball tryouts this weekend and I will be attending his middle school orientation this week. That's a little hard for me to stomach at this point, but I suppose I should get used to the idea sooner or later!
More later and pictures too!