Kip Hollin Cogburn was born at 2:39pm January 23rd, 2014. He weighed 6lbs 8oz, and was 19″ long. The doctor realized right away that his cry was not right. The doctors and nurses surrounded him and soon took him away to the nursery. We didn’t get to hold or touch him and I actually couldn’t even see him from where I was. I don’t know why but we didn’t really expect anything to be wrong. After several hours the pediatrician came in and told us that our baby was having some trouble breathing. They said it could be a normal newborn lung problem and it was fairly common, but that he was going to need to be air lifted to a bigger hospital in Little Rock to find out exactly what the problem was. She said that he would need to be on a ventilator because he was not breathing on his own and that I would have to stay in Arkadelphia to be sure there were no complications from birth. Kip spent the night in the NICU (Neonatal Intensive Care Unit) where they did lung treatments. Even after the treatments the doctor was not pleased with his oxygen saturation, so he ordered an echo of Kip’s heart. I was released and made it to Little Rock just in time to talk to the doctor. That’s when we learned that Kip had a rare form of Congenital Heart Defect (CHD) called Total Anomalous Pulmonary Venus Return (TAPVR). He would need a heart surgery. They sent us by ambulance to Arkansas Children’s Hospital. ACH did additional testing and decided the surgery was very urgent. We were floored, in shock, and completely confused. We didn’t even really know what CHD was or how likely it was that he would survive. His complete diagnosis also included Arterial Septal Defect (ASD) and Patent Ductus Arteriosus (PDA). At right about 24 hours old, when we should have been leaving the hospital with our newborn, they took my baby to prep him for open heart surgery. That was the longest 6 hours of our lives. Eventually we got the call that surgery went well, there was minimal bleeding and they were pleased with the repair. I can’t even explain the joy and relief we felt! Kip was then settled into his own room in the Cardiovascular Intensive Care Unit (CVICU). Where we witnessed some of the most heartbreaking things we have ever seen. The hardest few days were the first days while we waited for him to wake up. He was very sensitive to the morphine and didn’t move or open his eyes for days. It felt like an eternity. After he woke up, everything went great, his stats remained stable and he showed improvement everyday. We only had one minor setback, after a tube that was draining blood and fluid away from his chest was removed they found fluid by his lungs and had to put another tube in to drain that. That was a great and terrible day because when they took the tube out that morning we got to hold him for the first time, but that evening when the tube had to be replaced scared us so much. After that day his improvements were quick and very impressive. I guess what amazed me so much is how something so tiny could be so strong. We were then moved out of the ICU room and to our own room where my husband and I could sleep in the room with him and provide most of his care. Cody went back to work and I stayed with Kip. Being alone at the hospital was hard, but I could hold him when I wanted, and that eased the loneliness. I met other parents and joined some facebook groups to pass the time. Everyone at ACH – doctors, other parents, nurses, and staff were so supportive, we could not have made it without them. We were so very fortunate, as most babies born with heart defects have a much harder journey than Kip’s. On Saturday morning February the 8th, after 2 weeks that seemed like years, we were released from Children’s hospital. At which time Kip weighed 5lbs and 8oz. We could go home and Kip was gonna be okay! The only problem was that southwest and central Arkansas had received somewhere between 1-3 inches of snow the previous night! So we had a very long and stressful 3 hour car ride home. Kip Hollin Cogburn has been a completely normal and happy baby ever since.
Being in the Cardiovascular Intensive Care Unit at Arkansas Children’s Hospital is something that no one can be prepared for. There is something so terribly isolating about the beeps and buzzes of the machines. However, for some reason I never saw my child or myself as a victim. I somehow knew he would be okay and we would all survive. Maybe I just couldn’t consider the alternative. But something I couldn’t prepare myself for was the absolute heartbreak I felt when the code alarm sounded on the floor and every nurse, technician, and doctor ran to the room down the hall where a child was fighting for their life. I didn’t expect to feel the connection to other heart parents, or the need to reach out to them. It is a passion that had grow inside of me. I feel like what happened to Kip happened so that I could provide a unique perspective and start a campaign to raise awareness for Congenital Heart Defect. Ask your doctor about CHD. Knowing could save a child you love. Please Follow Kip’s Story on Facebook at http://www.facebook.com/KipHollin
Here are some facts about CHD from the Children’s Heart Foundation:
-Congenital heart defects are America’s and every country’s #1 birth defect.
-Nearly one of every 100 babies is born with a CHD.
-Congenital heart defects are the #1 cause of birth defect related deaths.
-Congenital heart defects are the leading cause of ALL infant deaths in the United States.
-Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
-Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.