We were overjoyed to learn that our fourth child was going to be a boy. On September 24, 2010 at 7:46am, we welcomed to this world and to our family, Kaden William. He weighed a healthy 9lbs 7ozs and had a head full of chestnut colored hair. He had rolls that spilled all the way from his sweet little shoulders down to his gigantic feet. He was pink as pink could be and had a cry that didn’t seem to end. From the outside our baby boy looked perfect. But beating in his little chest was heart that was broken. We were unaware that our little boy was born with a Congenital Heart Defect (CHD).
Shortly after Kaden was born he was taken to the nursery for his first bath and such. It was there that a nurse noticed that he had quite a loud heart murmur. Heart murmurs are not uncommon in new born babies. Every person’s heart has a ductus arteriosus, a shunt connecting the pulmonary artery to the aortic arch. This is the duct that allows blood to bypass a fetus’ fluid filled lungs while in utero. When a new born begins to take their first breaths, the duct closes and the baby’s blood begins to pass through the lungs to oxygenate the body. Sometimes, the duct doesn’t close right away and a murmur is heard as the un-oxygenated blood passed through that opening. Almost always within a few hours after birth, that duct closes and a murmur is no longer heard. This is what the doctors and nurses assumed was happening with Kaden. They decided to give him a while to adjust to life outside of the womb and decided to just watch him. The following morning, the pediatrician stopped by and became alarmed when he listened to Kaden and not only was the murmur still there; but it was loud and seemed to actually be worse than the day he was born. He decided that an echocardiogram would be necessary to ensure that our son had a healthy heart. Kaden went for his first echo at just 24 hours old. It was at about 10:30pm the same night, when our son was about 36 hours old, that a nurse came in to tell us that a pediatric cardiologist from St. Joes would be coming to speak with us about Kaden. Immediately we knew something was wrong. Why would a specialist be driving all the way across town late on a Saturday night to talk with us about our baby? Dr. Pophal arrived and began to explain to us what the echo had revealed. Our son was born with a CHD called Tetralogy Of Fallot which is comprised of four anatomical abnormalities which are: VSD (ventricular septal defect), pulmonary stenosis (narrowing of the pulmonary valve), overriding aorta and right ventricular hypertrophy. Kaden also had an ASD (atrial septal defect). Dr. Pophal made us aware that the only “cure” for our son would be open heart surgery to repair Kaden’s heart. We were crushed. I remember lying in the hospital bed and looking over at Kaden as he lay in the bassinette swaddled tightly sleeping. He was so perfect, and yet he wasn’t. In complete shock and disbelief we asked questions that we already knew the answers to hoping that we had heard wrong. Denial set in right away, and several times Brett asked Dr. Pophal if he was sure about what he was telling us. It was a lot to process and we were struggling to do so. The first few days after we were given the news, were full of all kinds of emotion. We were supposed to be bonding with our new son not watching his every move to make sure he was still breathing or that his heart was still beating.
We were able to take Kaden home from the hospital with no monitors but we did visit the cardiologist every other week so that an echo could be performed to see how his heart was holding up. I remember praying at each echo that they would say it was a mistake and his heart was now perfect. I would watch closely and try to understand and analyze what I heard and saw, all the while having no real understanding of what appeared before me on the screen. With each echo, his heart was beginning to show stress. He was put on medication to help with the pulmonary hypertension when he was 5 weeks old. The hope was to stave off surgery until he was 4-6 months old.
Unfortunately when he was 7 weeks old, we were told that the surgery could not wait. His heart was working overtime and needed to be fixed sooner than we had hoped. So on December 1, 2010 at 9 weeks old, Kaden underwent open heart surgery to repair his broken heart. When the time came to hand over our baby to the nurse, it took everything in me to let go of him. Brett literally had to pry him from my arms. I have never felt pain like that before. The uncertainty of whether or not our baby would survive was crippling to me. But after nearly 4 hours we received word that the surgery was complete and he was doing well. He came off the heart lung bypass machine like a champ and by hour 5 he was done and we were able to see our son. We had been prepared for what he would look like. We knew that there would be tubes and machines and ventilator breathing for him. I was afraid to see him and at the same time could hardly wait. Brett and I were walked back to his room and there he lay, a tiny baby in a giant bed, just as I had been prepared for. Every inch of his small body, which just hours before smelled of baby lotion, was covered in lines and wires. There were about a half dozen medications keeping him alive. Machines beeped and alarmed as his heart rate was working to stabilize. But somehow in all of the foreignness of the room, there was peace. I was so glad that he was ok and that he had made it through his surgery. Now I just needed to get him recovered. The first 24 hours were filled with ups and downs, but overall he did well. I was finally able to hold my baby 3 days after surgery and it was like holding him for the first time all over again. He recovered like a champ and mere 6 days after his open heart surgery, we took him home. He continues to do well and is growing like a weed and doing all the things that an almost 6 month old baby should be doing.
It is likely that he will undergo another open heart surgery to replace his faulty valve. But when that is, we don’t know. Kaden will continue to see a cardiologist for the rest of his life so that his heart can be monitored.
We feel truly blessed to be his parents and are so glad that he is part of our family. We have learned so much from him. Every time we see that red scar running down his chest, we are reminded of how precious life is and that in a moment it could be gone.
Brett & Allison
He is our awesome little "big" boy!!!
ReplyDeleteLove him to pieces...Grandma and Grandpa B