Gunnar was born on July 29th, 2018 at Hunterdon Medical Center. When he first arrived, the doctors and nurses monitored him closely in the special care unit. His heart rate, blood sugar and oxygen levels were not in the ranges that the doctors were comfortable with and he has a slight heart murmur. After 24 hours, the doctor asked us if we would agree to send Gunnar over to Morristown Memorial Medical Center for some further testing.
At 9:30 the next morning, Gunnar was transported to Morristown and then New York Presbyterian or CHOP. He arrived at New York Presbyterian that night and the tests were completed. The news of Gunnar’s condition was given to us that morning. Gunnar has a Congenital Heart Defect (CHD) called Hypoplastic Left Heart Syndrome (HLHS). The left ventricle did not develop enough to be functional and Gunnar would need a series of three surgeries to correct it. These surgeries were the only way to keep him alive.
His first open heart surgery (OHS), the Norwood Sano, was on August 6th. It was a 10-hour procedure and we waited for him to return to his room. The doctor came out to us and informed us that everything went great and the site looks wonderful. We all prayed for a speedy recovery. The next day, his stats did not improve as much as the doctors had wanted. They had to go in again and find the problem. His Sano shunt needed to be reshaped for better blood flow. Gunnar began to improve as expected from that point on. Slowly, each day, a tube was removed, oxygen support was lowered and we were anticipating bringing our Gunnar home to meet his brother, Bryce, for the first time.
Finally, on August 29th, Gunnar was strong enough to come home. Bryce greeted him with smiles and cheer in the waiting room. We were trained on placing his nasogastric tube (NG tube), administering his medication, and checking all of his stats daily. The first two weeks were overwhelming for everyone. But Gunnar was getting used to seeing his brother and watching his dog roam around the house.
About a month before his second surgery, Gunnar was having a hard time gaining enough weight. The more we fed him, the more he threw up. We were instructed that for the time being, we would continuously feed him via food pump over a 24-hour period. His weight gain picked up again and he was ready for his next procedure. The Bi-Directional Glenn was a success on November 26th. But then again, his oxygen wasn’t improving enough and his stats were all over the place. He needed to be brought down to the catheter lab for an exploratory procedure. They removed some extra scar tissue and sent him back to his room. Gunnar was there for 15 days which was much longer than expected. He needed tons of fluid to help his blood pressure and heart rate, but the fluid began collecting in his lungs. However, this time, Gunnar had a blood clot in his native aortic valve and needed blood thinners that needed to be administered by injection. He lost his ability to feel hunger and with that, the motivation to learn how to suck. He visited a feeding therapist every week and soon after that he began physical therapy to strengthen his core.
Gunnar has surprised all of this doctors and therapists. One day, he decided that he was going to master eating not only from a spoon, but from a bottle as well. It was a true miracle. That night, he pulled his tube out, as he always did, but this time my husband and I decided to leave it out and give him another trial off of the tube. He did an amazing job. With some ups and downs, he eventually graduated from his GI specialist and a few weeks after that he graduated from his feeding therapy. He is beginning to crawl and take his brother’s toys. He is making so many sounds now and seems to be so much happier tube-free. Pretty soon, Gunnar will be able to get exposure to other children and hopefully be able to handle daycare. We are so lucky to have had such amazing medical professionals, family and friends who have supported him and prayed for him. He is doing amazing and despite his medical history, he is the happiest baby anyone could ask for