"Give me more speed"

Ring Bearer Drew with his lovely sister Anna (flower girl)

Our precious little Andrew was born on October 20,1999. We found out at our 20 week ultrasound that he was going to be born with hypoplastic left heart syndrome and were prepared, as much as one can be, to have him transported by ambulance to Children's Hospital of Philadelphia (we were living in Virginia at the time) to have his first stage Norwood immediately after his birth. So on his fifth day of life, weighing in at 6# 7 oz., Andrew had his first stage Norwood, with the surgery performed by Dr. T. Karl. Andrew did very well and after the proverbial "roller coaster" recovery we brought our little fella home after a 14 day hospital stay.

Life obviously wasn't the same--we had never before had a baby in the house! But apart from Drew's medicines and obsessing on whether or not his lips, toes, and fingernails looked too blue (his oxygen sats were in the low 60's at that time) or the constant force-feeding and pediatric cardiologist visits, things really seemed to be what a normal family might experience! The normalcy didn't last long—when he was 5 months old it was time to prepare ourselves for his stage 2 surgery, the bi-directional Glenn. Handing over our seemingly healthy 6 month baby for another open heart surgery was not an easy thing to do, but we had no choice. So back to CHOP we went to have his surgery with our miracle worker, Dr. Karl.

After another relatively easy recovery (about 10 days in the hospital) it was back home to Virginia to resume life as we had known it. Drew didn't have any major complications except that he had developed a horrible case of reflux after his surgery. This sent us running to the ENT to see how we could remedy the situation for our already finicky eater who seemed to have even less of an appetite because of his horrendous coughing attacks. After a few months of Zantac things seemed to get back to normal—he even gained some cute little chunky cheeks!

Then we found out Drew was going to have a little sister, due just in time for his Fontan. Anna was born on March 7, 2001 weighing a whopping 9 lbs. 12 oz.! I thought they'd handed me a 6 month old baby! So with 4 week-old baby Anna at home with my parents, Steve and I took Drew back to CHOP for his Fontan. Surgery 3 was by far the hardest as far as the "handover". Especially since the real reason his PC decided to have his Fontan in the spring rather then the coming fall was to avoid flu season, meaning we COULD wait 6 more months, but all things considered our PC felt it best to do it earlier rather than later. So it seemed impossible to hand over a very healthy 18 month old when we COULD be waiting until he was 2 years old.

And as it turned out, we may have avoided the flu "season" but did not avoid the flu---poor Drew was infected with rotavirus AND adenovirus and started having the symptoms the day after his Fontan. As if recovering from his surgery wasn't enough, now he had horrible diarrhea and NO appetite. He also started having an arrhythmia, supra-ventricular tachycardia. This was a very scary experience for us--his heart would race to about 220 BPM and they had to use the pacer wires to override it (up to about 240 BPM) back into a normal rhythm. Probably one of the more "freaky" experiences for me....I felt so helpless and they came out of nowhere. They put him on digoxin to keep the SVT "in check" and we have been told that we will stop the digoxin when he is old enough to actually verbalize whether or not his heart is racing. This is fine with me, that's not a guessing game I want to play!

So after a very difficult 14 day post-Fontan stay (balancing the dehydration from his stomach bugs and trying to keep him "dry" because of his pleural effusions was tricky) we brought Drew home. It took him a few days to get the strength to walk again, but he has been off and running since! Today he goes to preschool, plays soccer, plays football with the big kids in the neighborhood, and is no different from an average 4 year old, apart form a speech delay and his small stature. He only weighs 32 pounds--his 3 year old sister passed him up months ago--but he is strong and healthy and doesn't miss a beat!

We see the PC every 6 months and his last echo was in December of '03 and it showed a very strong heart. His normal oxygen sats are between 91-93. His PC has said that he is "the picture of what every PC dreams a child with HLHS will be like". He takes captopril, digoxin and baby aspirin.

Getting ready to kick the ball--Drew in Blue

We thank God, we thank our surgeon/hero Dr. Karl and we have very fond memories of all the PC's and nurses at CHOP. I think the biggest indication of how awesome these people are, and how awesome are the miracles they perform, is that I often "forget" Drew has a heart defect! Well, not really forget, but I certainly don't dwell on it!

We're sure there will be "tire changes" as Drew gets older, but we will deal with those as they come. For now we are grateful for every day and every moment that we get to see him, smell him, chase him, teach him and love him.