Kurts Story
What a miracle life is! This is the thought I had on the day Kurt was born. We anticipated a healthy baby boy, but he was far from healthy. Just a few moments after birth his APGAR scores were 8 and then 10. They handed him to me for what seemed like just a few seconds before they noticed he looked “a little blue” , then they whisked him away for “observation” in the nursery.
His condition went from bad to worse overnight and by about 4am the doctor wrote the order to FFL him to Denver Children’s Hospital. They didn’t think his condition was life threatening so they drove him in an ambulance. We were told that he probably had pneumonia or a hole in his heart. We were discharged from the hospital went to pack a few things and then drove to Denver ourselves. Upon pulling in to the parking lot we got a frantic call from one on the Docs telling us we needed to get there as soon as possible to sign consent, but wouldn’t tell us anymore over the phone. When we went up to see him he was intubated and hooked up to so many machines and wires, we could barely tell this was the same baby I gave birth to. Plus there was all the tears that blured my vision that I just couldn’t keep from rolling constantly down my face. We were then sat down by a team of doctors who tried to explain his diagnosis and how severe it was. All I could hear was how he was very sick and might die.
We signed consent for a procedure in the Cath lab, which we didn’t quite understand at the time, but the part that we did understand is that there was not time to explain it was sign and he lives or don’t and he dies. The transport team came to get him saying they were 15 minuets late and needed to take him now. We were not ready for him to leave us. At that point they had given us a 50-60% fatality rate and we were very scared that the next time we saw him he would not be alive. He had to be shocked once in the cath lab to correct arrhythmia but came out of heart cath stable. They stinted open his ASD successfully. It was a miracle he stayed alive long enough to get it stinted open since they usually do this either moments after birth or while still attached to mom. He was almost 24 hours old! What a miracle life is!
I finally got to hold him again 2 days later after extubating him, it felt like the first time!We had to say good-bye again when he was 11 days old. Wondering again if we would be seeing him alive he went for the Norwood operation. He came out looking like he was hit by a bus or at least ran over by one. Chest tubes, pace-maker wires, breathing tube, you name it. His chest was also left open for three days. He was lucky to have no complications from surgery up to this point until he was extubated. It then went to extubation, c-pap, cannula and then back to itubation. This happened 9 times over 13 weeks. They did another heart cath to make sure all his pressures were fine- they were, lung biopsy which showed normal cells, a few bronchoscopes and countless heart echos. All came back fine, but we couldn’t keep him on a breathing tube with ventilator forever so the decision was made for him to get a tracheotomy and place a g-tube for feeding since he also wasn’t eating anything by mouth this whole time he forgot how to eat.
He then spent the next 3 ½ months in the NICU weaning off the ventilator.
We had to hold off his Glenn surgery until he was off the ventilator and decanulated. We were told this would be a long shot since he had damage to his airway and the best we could hope for was to get off the ventilator and to explore other surgery options to prolong his life. We were also told he would out grow his sanno-shunt placed with the Norwood surgery before he would be able to check all these boxes.
We decided that we would just love Kurtis and take one day at a time, but even we were wondering and praying that he would be able to stay with us for the long run.
When he was 7 months old he was weaned completely from the ventilator, 11 months old was decanulated and surprised everyone at thirteen months he went for his Glenn operation with no complication.
After his Glenn we were discharged 6 days later! We were told it would be more like 10 days to a month.
We landed back in the hospital 5 days later because he had too much fluid in his lungs, We went home seven days later.
Since the Glenn life seems to fly by. Kurt is now cruising and crawling around the house, taking his first steps on his own. We hear his first few words -mom, grandma-gaga- and truck and also signing eat, please, Hi, diaper, mama, and Up! He also started eating and drinking by mouth, he takes over half of his calorie intake by mouth now and is still working on drinking only taking a few Ounces a day, but that is better than a few drops! Its very exciting to see him feed himself yogurt with a spoon! On top of it all we are now weaning his oxygen off, he gets a few hours a day cord free!
He is 19 months old now and doing wonderful! We have been back in the hospital once with pneumonia, but besides that he has stayed happy and healthy. We are very blessed and never take for granted that every day is a miracle!
