Saving Little Hearts

We were overjoyed when we found out we were having a baby. Everything seemed to be going fine, we went for an appointment in late May of '03 to find out what we were having. A boy! Then the red flags started to go up. I heard the tech. tell the OB that she could not see all the chambers of Jackson's heart. I got a little nervous, but the OB said that probably we needed to come for an appt. in about a month and they would look again, he would be bigger and maybe he would be rolled a different way and they could see everything. Thinking it would be just a routine visit, my wife went alone. I was outside mowing when she came home and just went into the house.
I went in and asked what they said. She said that they cannot see all of his heart and we were being referred to Vanderbilt. Then came the worst day of my life, we were still upbeat, there was still a good chance that there was still no problem. As the tech. looked, we were all talking, measuring little Jackson, he was a good size, then the room went silent and the tech. asked for the OB to come in the room. He took a look and the next thing I remember is we were being wisked away to a private room to talk. The OB said that there was a problem and we needed to go see Pediatric Cardiology, now! We went over there, in shock. Dr. Kavanaugh did the echo, she looked for a long time, then said Jackson has Tricuspid Atresia, an ASD and VSD. She said luckily there is hope, she explained the whole condition to us, he will require at least 2 surgeries, probably 3. She said we will have him at Vanderbilt, lucky for us, only 20 minutes away from where we live.
At 32 weeks, my wife started to leak amniotic fluid, so I took her to Vanderbilt and she was put on bed rest, steroids started. At 33 weeks, Jackson decided it was time and made his grand entrance. 4 pounds, 15 ounces, 18 inches long, August 5, 2003. He did well and after a week in the NICU he was sent home. We went back for numerous cardio. visits with his new best friend, Dr. Liske., placed on Lasix, Digoxin. When he was about 2 mos.
old, he was getting too much blood flow to his lungs and needed to have a Pulmonary Band placed. The surgery went smooth, the recovery did not. We spent about a total of 2 weeks in the hospital, brought him home only to end up back there a week later with a Pericardial Effusion, they removed 2 ounces of fluid from around his heart at 2:00 a.m. on a sunday morning.
about another 2 weeks in the hospital and home we went. At about 6 mos. old, Jackson went for a cath. to see if he was ready for his Glenn, we got the surprise of our life. A few days later, Dr. Liske called and said that it was decided that Jackson would skip the Glenn and they were going to try and ride him through straight to a Fontan. So, about 1 1/2 years went by, many cardio. visits, and Jackson's body was starting to show signs of low oxygen.
His sats were in the low 80's on a regular basis. So, another cath., I figured they would wait again, but then I got the call that will always remain in my mind, it was time for surgery. Dr. Liske reassured me that this was a good time and Jackson's chances of survival were excellent. Our previous surgeon had since left, so Dr. Liske recommended Dr. Karla Christian, another of the Pediatric Cardiac Surgeons at Vanderbilt. So, I finally asked Dr. Liske if he would have her do a Fontan on his kid and also that Jackson was not only our child, but his too. He said without hesitation and that all his patients are his children, that was good enough for me. So, on Nov. 1, 2005, Jackson went through an 8 hour full Fontan. He did well, so did the surgeon. 7 days later we were discharged, Jackson was playing outside one week post Fontan. He currently is on a baby aspirin and Enalapril. Some time in the next year or so, he will have his fenestration closed. So, for now we are enjoying life, planning vacations( it has been a long time since we have had one) and getting ready for birthday #3.
We feel that as long as we have Dr. Liske, we are in very good hands.
He has always made the correct decisions and gives it to us straight. When he says he hopes it will be many many decades before Jackson needs any other surgeries, that is hopeful. Nobody knows the long term outcome, but we have learned to be thankful for every day.