BALLOON VALVULOPLASTY

September 30, 1999

Jake was no bigger than a t-ball mitt when the doctor's performed his first surgical procedure. -Sept. 1999 - 3#, 1oz.

Jake had been discharged from the NICU and was close to being sent home when his condition suddenly became very bad. His pulmonary valve was not fully open and he was failing very quickly. He needed a therapuetic intervention immediately, but doctors were concerned about his size---he was only 3 pounds and it was questionable whether or not he would survive open heart surgery.

Sometimes, it is possible to open the valves without resorting to open heart surgery. A catheter with a collapsed balloon at the tip can be inserted into an artery or vein in the leg. This catheter is then advanced into the heart and across the narrowed valve. The balloon is then expanded to open the valve.

This was a very risky procedure for Jake because he was so tiny. We're told that the surgical team waited with bated breath as the balloon was expanded, as it very well could have ruptured Jake's artery and he would have bled to death. Additionally, the Anesthesiologist was less than optimistic when he spoke with us. You could tell that he was not confident that Jake would survive the procedure.

In the waiting room, it was dark and quiet at 11:00 pm. Each time the phone would ring, we knew it was for us and our heart would jump into our throats.

When Dr. Halpe came out of the operating room, he smiled and said Jake had done well and the procedure was successful. He then added that Jake was the smallest baby he had ever performed a cath on.

Jake went home a week later.

Jake on his way home from the hospital. October 6, 1999 (one week post-op).

The Blalock Taussig Shunt

November 23, 1999

Jake was 10 weeks old when we noticed that he was crying more than usual and having trouble eating. These are signs of Congestive Heart Failure; however, he did not seem to be any more cyanotic (blue) and he had just had his two month immunizations. After calling the doctor all weekend and chalking his behavior up to a reaction to the shots, I decided that things were not right and demanded that he be seen by the doctor. Upon arrival, the intern checked his oxygen saturations. The blood drained from her face as she read the results and she ran to get a doctor. Jake's sats were in the 50's (normal being 100 for a healthy baby). We were sent to Phoenix Childrens Hospital in an ambulance. Jake was still to little to endure the full repair of his heart.

Cardiologists attempted to stabilize Jake with medication, and it seemed that he was stable toward midnight. The nurses and doctors encouraged us to go home....that they would call if anything happened. The hospital was only 5 minutes from our house and we were exhausted, so we went home. At 3am, the nurse called to say that they were intubating Jake and that the surgeon had been called in. We ran back to the hospital, kicking ourselves for leaving him. We regret that more than anything and we vowed that Jake would never spend another second alone in the hospital.

He was just 5 pounds when they wheeled him off to emergency surgery.

In heart defects in which there is too little blood flow to the lungs (so that the blood does not get enough oxygen), the initial treatment is to open the ductus arteriosus with a medication called prostaglandin. However, this is only a temporary treatment. In heart defects in which the cause can easily be repaired (such as severe pulmonary stenosis) the defect is simply repaired. In other cases, a tube must be placed from the aorta to the pulmonary artery (like the ductus arteriosis) so that the prostaglandin can be stopped. Blood flow to the lungs is provided through a tube from a branch of the aorta to the pulmonary artery called the Modified Blalock-Taussig Shunt.

After the surgery, surgeon Dr. Ravi Koopat told us that Jake's 02 sats were very low during the surgery and that it was likely Jake would have brain damage. Fortunately, that has not turned out to be the case, but we knew that Jake was lucky to be alive.

We spent our first Thanksgiving as a family in Phoenix Children's Hospital. Thanksgiving Day, the volunteers came by with turkey dinners. One of the women came in and told me that I should pick out a toy for my baby. I never, ever thought I would be on the recieving end of a toy drive. It was a very humbling experience. We still have the little yellow duck that I picked out--a constant reminder of how blessed we are.

Three days post op - November 1999.

2 weeks post op - December, 1999 - 3 months old.

HEART CATHETERIZATION

May 15, 2000

This picture was taken in April, 2000. Jake was 6 months old and starting to become more cyanotic. He's about 10 pounds in this picture - 2-3 weeks pre-cath.

When doctors need the most detailed pictures of the heart possible, they will ask for a heart cath. Catheters are bendable tubes the size of a piece of spaghetti. These tubes are threaded into the heart to give the doctors a better look.

Heart caths are usually done to make a diagnosis or to get more complete information before surgery. In this case, doctors were looking to see that Jake's arteries had grown and that his heart was ready for the full repair.

Heart caths are usually outpatient procedures, although it is not uncommon for a child to be admitted overnight for observation. In our case, Jake had a seizure after coming out of surgery. He was feverish and doctors wanted to test for spinal meningitis, as well as make sure there were no other infections or bacterias. Our hospital stay was 5 days after the heart cath, but this was a special case. It was later determined that Jake suffers from febrile seizures and that is likely what caused this seizure.

The good news was that Jake's heart appeared ready for surgery. Although he was still very little (only 11 pounds), doctors did not want to wait anymore to procede with surgery. Jake's sats were in the high 60's and he had stopped gaining weight. He was failing quickly, so it was time to fix his heart. Surgery was scheduled for 3 weeks later.

Full Repair

June 5, 2000

This is Jake the morning of his heart surgery.

At 8 months old and only 11 pounds, Jake was ready for his repair. During this procedure, surgeon Dr. Michael Teodori would perform the following:

1) closure of the ventricular septal defect with a patch

2) relieve the pulmonary outflow tract obstruction, which sometimes requires resection of right ventricular muscle bundles

3) pulmonary valvotomy or excision

4) repair of any associated defects--in Jake's case, there was also and ASD (hole between the right and left atrium) that would be closed.

This section has been a bit harder for me to complete. The repair is a bit of a blur to me, as I think God gives you an amazing ability to block out bad memories. I've had to take a few breaks in my writing--the memories are so painful. I'll do my best to re-cap the week long stay in the hospital.

Jake went in for surgery early on a Monday morning. He was in such a good mood that day and we had him dressed in his tie-dyed heart onsie. He flirted with the nurses and was an angel as we waited for the surgical team to come and get him. Letting the nurse take him into the cold operating room was the most difficult thing I'd had to do in my life, and still is. I remember handing him over to the nurse and praying telling him that while mommy was gone, Jesus would be holding him. Most importantly, I believed it with all my heart.

The surgery was long - about 7 hours. We had family, friends and clergy with us as we waited. The nurse was good about keeping us updated every hour or so. It took about 2 hours to open his chest, as the scar tissue from the BT shunt made it more difficult.

Once out of surgery, we were taken to the pediatric critical care unit. It had been a long day and Jake was still heavily sedated, but seemed stable. So, I went home and Lloyd stayed at the hospital in the parents sleeping room.

The next day was the most difficult. Jake's blood pressure was all over the place and he was not stable. The surgeon and cardiologist hovered around his monitor---which I knew was not a good sign. Our nurse seemed very stressed, as well. For the first time in 8 months, I began to think that we may lose our little boy. I remember thinking that there is no way I could plan a funeral for an infant. I didn't have the strength. Lloyd and I went to the chapel to get away from the commotion and to pray for God's healing touch. While there, I felt a calm come over me. I knew that Jake was not well, but I felt that he would recover. As we went back up to his room, the surgeon stopped us and said that we had reason to be concerned...Jake was very sick. He explained that they were going to try draining some of the fluid from his lungs, but that there was a chance he'd have to go back in to surgery. I knew that Jake would not survive another surgery at that point. I asked God to please make Jake better.

After draining the fluid, Jake turned the corner. His pressures became more stable and everyone seemed to relax. Lloyd and I asked that the nurse close the door and turn down the monitor. We felt that he really needed to rest. We told visitors that only one person at a time was allowed in the room and that visits had to be brief.

The next day, Jake was better. He began getting weaned off of the sedatives soon the ventilator came out.

One week after his repair, we took Jake home. His heart was fixed.

13 months later, on July 23, we graduated to one year appointments with the cardiologist. It was a huge victory for us. Jake was now a normal, healthy toddler.

Jake, 10 months old. Approximately 2 months after repair.