Joey is my husband's and my first child. We had a normal pregnancy until the 7th month. We had complications with premature labor which required me to be on bed rest. Joey's condition was never detected?even with 3 ultrasounds. Joey was born at 36 weeks gestation and weighed 7 lbs. 5 oz. A few minutes after birth it was noticed that Joey was breathing abnormally. He was then transferred to another hospital with a suspected lung infection. That hospital diagnosed him with HLHS and transferred him to U of M. All of this happened in the first 12 hours of Joey's life and while I was still stuck in the original hospital, alone and terrified.
Joey had his Norwood procedure at 4 days old. The surgery took 8 hours because of some complications which made him retain a lot of fluid. After the surgery he weighed 16 lbs. We were in the ICU for 3 weeks waiting for him to pee off the extra fluid. He had a morphine withdrawal seizure the second week we were there. We were finally able to take our baby home on November 10, about 3-1/2 weeks after he was born.
At home, Joey did well. He slept an awful lot (16-20 hours a day). Since he was our first baby, it did not seem abnormal to me. Joey took some of his bottle at home and would get the rest through his NG-tube. But, about a month after we were home, he stopped taking anything by mouth. That is our biggest problem with Joey and we are still working on it. He now has a G-tube, which is much nicer than a tube down his nose though!
Joey's hemi-Fontan was done on April 4, 2002 at around 6 months old. The doctors said the average stay for this procedure was around 5-10 days. We were hopeful for a quick stay, as compared to the last one. But, unfortunately, Joey had more complications with morphine withdrawal and fluid retention. It was the same as last time, everyday measuring urine output and saying a quick prayer when it was time for the daily weight check. We were lucky to have no major complications though, and were discharged after 11 days.
Joey is now one and a half and doing great heart-wise. He has asthma, which is hereditary in my husbands family. Joey has been slow in all of his gross motor skills and speech. Joey will have his Fontan either this summer or next summer, depending on how his upcoming heart cath goes.