Bradley's Long Road To Recovery

On February 6th 2017 at 11:38am we welcomed our amazing son, Bradley Michael Nole, into this world. It was the best feeling in the world to finally be able to hold him in my arms. That feeling was unfortunately short lived when they had to rush him up to the NICU after about 5 minutes of him being in my arms. When I was 20 weeks pregnant I went for my first ultrasound, this is when they discovered that there was an abnormality with Bradley's heart, but they didn't know what it was. I was bounced around between several specialists until one was finally able to diagnosis that Bradley had Aortic Valve Stenosis which is the narrowing of the valve in the large blood vessel branching off the heart. After several appointments and through the remainder of the pregnancy they were able to state that to fix this problem they were insert a balloon into the valve and that the rest of the heart looked great except for the left ventricle of the heart. On the fetal echoes they could tell that the left ventricle of his heart was on the smaller side but still in the normal range and that it shouldn't be a problem after birth.
After Bradley was born, they took him to the NICU to assess him and do the necessary testing to make sure that what they found while in the womb was still the case. After several hours I got a phone call in my hospital room from the doctor who would have been doing the procedure to insert the balloon into Bradley's aortic valve. The doctor stated that after assessing Bradley, his aortic valve stenosis wasn't as severe as they had originally thought and appeared that they wouldn't have to do the procedure after all. I hung up and started to sobbing but with the happiest of tears. We all felt so re-leaved that our precious baby wouldn't have to go through this procedure and was healthy! That also was unfortunately short lived.
Within the next few days of Bradley's health started to deteriorate, and quickly. To start Bradley on medications they inserted an umbilical line, that shortly became dislodged. Next they inserted an iv into his left arm, that vein quickly began to collapse so they then moved to his right arm, then right leg, then left leg. All of his veins started collapsing so their last resort for an iv was through a vein in his head. That too did not last long. The last resort was to insert a Neonatal PICC line into his right arm which was a direct feed into the heart. This line can be extremely dangerous because if it is exposed to any sort of bacteria, it goes directly into the heart and spreading to the entire body within seconds which can then lead to death. They proceeded to do a spinal tap just to be absolutely sure there was no infection present, which thankfully there wasn't. Bradley then began to have an extremely hard time breathing to the point where they had to put him on oscillating ventilator because he could no longer breathe on his own. He was gasping for air and the doctors could not figure out why. After 2 weeks, numerous NICU doctors, cardiologists, specialists, testing, ultrasounds, x-rays and about 10 different medications, they wanted to send Bradley for a heart catheterization. This is a procedure used to diagnose and treat cardiovascular conditions. During cardiac catheterization, a long thin tube called a catheter is inserted in an artery or vein in your groin, neck or arm and threaded through your blood vessels to your heart. They did this to check the pressures within the different parts of his heart to try and figure out what was causing the right side of his heart to become so enlarged and what was causing his lungs to work so hard.
What they were able to find was that though his left ventricle was small but still within the "normal" range, it couldn't handle pumping the necessary amount of blood to the body. The purpose of the left ventricle of the heart is to pump oxygenated blood to tissues all over the body. Bradley's left ventricle was not only too small to handle this but also had scar tissue that was restricting it from pumping correctly. This is what was causing Bradley's lungs to work as hard as they were, because they were getting ALL of the oxygenated blood rather than the body getting it then recirculating it back to the lungs. Over time Bradley's extremities began to turn blue because they were not getting the necessary blood flow.
After the cardiac cathereterization was done, they doctors came to us with the results and that Bradley had 3 options, and I really don't think Kyle or I were ready for what they were going to say. They began to explain that Bradley could try and get a heart transplant (something that could not be done at Hershey Medical Center and something that would most likely take a very very long time to get), a surgery call The Norwood Procedure or we could let nature run its course which meant that we would soon be burying our son. The doctors then stated that they thought the Norwood procedure would be his best option in their opinion. The Norwood procedure is a three-stage heart surgery to create a new functional systemic circuit in patients with hypoplastic left heart syndrome. Stage 1 of the Norwood procedure involves atrial septectomy and transection and ligation of the distal main pulmonary artery. I had to sit down after they told us this news because we went to the hospital under the assumption that he would need a balloon put into his aortic valve which was a minor procedure and it had now turned into an open heart surgery and not just 1 open heart surgery but 3.
It was Friday February 17th when Kyle and I agreed with the doctors that the Norwood procedure would be his best option, so we asked when this procedure could be done. The doctors stated that the operation had already been scheduled for the morning of February 20th... My heart sank and I was too in shock to cry, blink or even breathe. The fact that Bradley's condition had rapidly turned from something common and minor to and life or death surgery was almost too much to take. But we took a deep breath and pushed those thoughts out of our heads and told ourselves that he is the strongest little boy and if anyone can survive this, it's Bradley.
Monday morning came too fast, but we got to the hospital early and started to prepare ourselves for what could possibly be the worst day of our lives. We held Bradley and gave him a million and one kisses before they took him for the operating room. Then all we could do was wait. After they took Bradley, the social worker for the Pediatric Intensive Care Unit (PICU) introduced himself and explained that when he receives any updates he will let us know immediately and will continue to check in with us until the 6-8 hour surgery was over. After what seemed like days of waiting the social worker, Warren, advised us that the surgery was close to over and that he could escort us to the doors that they would be bring Bradley through so we could see him for about 10 seconds before it would become another waiting game. I am beyond grateful that Warren was there to let us see Bradley, even though it was only for about 10 seconds, we will forever be grateful for that.
Though the surgery was done, the first 24 hours after the surgery is still just as dangerous as the surgery itself. I was confident that if Bradley could make it through this long surgery, he could make it through anything. The next 24 hours came and went without any complications and Bradley's health slowly began to improve. We were so proud of our little super hero and so grateful that we were in the best possible hospital to be taking care of him. Over the next week things continued to get better, so much so that he was able to come off of the breathing machine earlier than expected! Slowly but surely over the next few weeks they began disconnecting things one by one with Bradley showing the doctors that he could handle anything they threw at him. The next big hurdle in this process is for him to start feeding again.
Bradley now needed to relearn how to feed first through a feeding tube then a bottle. He had been withheld from feeding for so long that his stomach was almost non existent, so because of this they had to start him off on NJ-tube. This tube is inserted through the nose and down into the middle section of the small intestine. After he had shown that he could handle this they just recently switched him over to an NG-tube which is where they insert it into the nose and down into his stomach. This did not start well at all because his stomach was so small that it couldn't handle 5ml of breast milk. Slowly but surely his stomach started to expand and he can now just about handle his full amount of 75ml of breast milk! During that time frame they were also able to switch all of his medications over to oral medications which means we are getting very close to finally being discharged! This surgery typically takes 6 weeks or more to recover from, Bradley has done so well that he will be getting discharged over a week early!
I am so incredibly proud of my little hero, but unfortunately this is not the last of Bradley's road to recovery. Though we will finally be going home soon, he will now have to visit the cardiac clinic in Hershey every single week until his next open heart surgery which will be between 4-6 months of age. He will also need continuous in home nursing visits, therapy, in home medical equipment, and several medications. The time between his first and second surgery is very crucial. Something as simple as a common cold can kill him or lead to another extended hospital visit. Because of this I cannot send him to a regular daycare and he also does not qualify for medical daycare or any kind of in home care. This has left me with no other choice but to stay at home with Bradley to protect him until he receives his next open heart surgery.
I feel ashamed asking for help, but between Bradley's condition, my car being totalled by a School Bus that their insurance company refuses to fix, having to travel back and forth from Hershey every week and being new home owners, it's help that we could really use. And also because of our financial situation, Kyle had to go right back to work only a few days after Bradley was born and now only gets to see him on the weekends. We appreciate and thank you greatly for anything you can contribute or do to help. I also want to thank everyone who has reached out to offer their emotional support and for our families and friends going above and beyond to help us with Carter and everything else and just being there to support us. I will never be able to thank you enough. This experience has shown me how incredibly short life can be but also how incredibly resilient infants can be. This surgery is saving Bradley's life but this condition has been shown to have a shorter life expectancy, so treasure every possible moment with your children, family and friends, you never know when it will be the last.
Thank you for taking the time to read our story and sharing it. Anything will help in our time of need, especially keeping Bradley in your thoughts and Prayers.