Bryce, 4 years old!

Our story begins with an uneventful pregnancy. Bryce Jon was born February 18th at 9:39 p.m. His color was blue, but we still got to hold him. After a few minutes of oxygen his color got more pink. We held him and called family to give them the good news. He even got a bath at 1 a.m.

At 7:30 a.m. his color became ashen. He pinked up after I fed him. Then at 8:30 the nurse came to take him for an examination. It was then that, while in the nursery, his oxygen level dropped dangerously and an alert nurse put him on oxygen and notified our pediatrician.

Our pediatrician came to our room and had a concerned look on his face. It was then that we were told our baby was in critical condition and was in the NICU. He told us that he was very concerned. He believed that it was either his lungs or his heart. They were going to do further tests including an echocardiogram. We were shocked and couldn?t believe our baby was ill.

As we waited for test results, we prayed and contacted our family. They allowed us to see Bryce when he was stabilized. It was unbelievable to see our baby hooked up to wires and having I.V.?s coming out of his umbilicus. It?s hard to think that only hours earlier I had held him in my arms and breast-fed him.

After the echo was done, we had a diagnosis. Transposition of the great arteries. We were given options of hospitals and chose Mayo in Rochester. I asked to be discharged and planned to fly out with Bryce. He was flown out of our city at 7:30 p.m. and arrived in Rochester 1 minute before he was 24 hours old. It was late before we were able to see Bryce settled and speak with the Doctor. He explained everything in detail. We found that Bryce also had a ventricular septal defect and atrial septal defect. Bryce?s surgery was done on the 22nd. He had what is called the ?Switch ? operation. The arteries are switched back to the correct position along with the coronary arteries. It took 5 hours. Everything went well. A patch was put on the VSD and the ASD was closed with sutures.

Bryce

On the 8th of March, at 18 days old we were ready to go home. I was able to stay in a rollaway bed with him all night and take care of him. It was so wonderful to finally be near him all night. The next morning we would get to go home. They were going to take one last chest x-ray. After I returned from the hotel, I was shocked with the news that we were not going home. Bryce had chylothorax and it was affecting his left lung. He had to be sedated and have an echocardiogram and a chest tube was put in. It was disappointing, but we were told it would only be a matter of days before we could have him back on breast milk. He was on TPN for a few days then on a special formula called Portagen. It is a medium chain fatty acid. The formula did not agree with him. He began to vomit and he would gag easily by the feeding tube. Around the same time he became fussy. They felt it was morphine withdrawal. So, he was put on methadone. He also needed some blood transfusions due to the procedures. Bryce developed a rash on the same day of the transfusions. I was afraid it was the blood, but it turned out that the sheets were irritating his skin. We had to go out to buy some baby soap and some of the nurses took the linen home to wash.

We were amazed to see how purposeful Bryce was with his hands. Even at such a young age, he would bring his hands up to hold onto his IV or BP cuff. Around the 15th of March they found chyle drainage on the right. It was then that we decided to fly home to get our daughter. I couldn?t stay away from her any longer. It was so hard to leave Bryce when he would be going through another chest tube insertion, but we had to also think about our girl. We drove back on St. Patrick?s Day. It felt good to have the whole family together again. Breah got to meet Bryce and she loved to play by a beautiful water fountain that was in the hospital. We got a routine down. Each day I would walk down to the hospital to visit Bryce and then in the afternoons, my husband would go. We had been staying at the Ronald Mc Donald house by now and it was almost like home to us. The feedings were going well and Bryce was discharged March 29th. We were discharged a few days before Easter. The drive home was long, but having the whole family together without any monitors and nurses around was the happiest I had been since the nightmare began. Bryce continued on the Portagen formula at home for 3 months. He still would vomit and I had to keep a close eye on his calories. His weight was in the 10th percentile for months. It wasn?t until he was off of the Portagen that he thrived and gained weight. But Bryce didn?t let any of that get in his way. He was early to sit up and went from crawling to walking along furniture within one week. He amazes us every day.

Bryce will be 4 years old soon. He is a spunky little boy and never stops challenging himself. He?s a fighter and I believe that helped him to come through. Bryce sees a cardiologist every year and has echocardiograms each year to keep a close eye on things. He will need a stent put in a pulmonary artery that has narrowed because of the surgery. This will be done at the age of 6 years. Bryce used to have chronic croup that we believe to be caused by intubations. We consider ourselves lucky and so blessed to have such a good outcome.

June, 2005 Update

Bryce has not needed a stent yet and will be watched every year. Bryce has developed more lung issues in the last year. He is getting croup with a lot of his colds. Although this is inherited on my side of the family, I do think the lung issues he has had in the past has affected him. Bryce handles it great though and tells everybody how he has had 3 surgeries. Only one surgery was heart related. He has had a tear duct probed, and ear tag removed, and a hernia repair.

Bryce enjoys race cars, T-Ball, fishing, and giving many hugs to his parents. He is now 6 years old and starting the first grade this next year. He is already reading and is a good student.