Austin was born October 7, 2002 following a complicated pregnancy and an emergency c-section. I had over 20 ultrasounds throughout the pregnancy to check Austin and because I had unexplained bleeding. The whole pregnancy I felt like something was not right, that something was wrong. On October 7th I had a routine appointment because I was 35 weeks and getting ready to start going to the doctor every week. At the appointment they did yet another ultrasound, and saw that my fluid was low. So I was sent over the hospital for evaluation and was told I would be on bed-rest in the hospital for the remainder of my pregnancy. We expected 5 more weeks. As I was getting settled in the heart rate machine started beeping, Austin’s heart rate had dropped to 20. It came back up but immediately dropped again. So I was prepped for emergency c-section. At 1:34pm Austin was born pink, and screaming. He was only 4 pounds 13oz, but was gorgeous. So tiny, my first son was only 15 months old and he weighed 9 pounds at birth. So Austin seemed so little to me. Everything went fine, I was closed up and placed in my room and Austin was bought in. We had tons of visitors that day, and my other son came to meet his little brother. I needed some rest, so everyone left and Austin was placed in the nursery. I just could not stay awake, so it was better for him. At 11pm that night, my pediatrician came in the room and told me that Austin had a serious heart murmur and was being transferred to a larger hospital up north in Mobile, Alabama. They bought him in, he was in an incubator and on a ventilator for transport. It was so scary, I was not expecting any of this. Austin was transferred to the University of South Alabama Women’s and Children’s hospital. They have a great NICU. I was in pain because I had a c-section but my doctors were great, and gave me medicine so I could be awake and run up and down the stairs at the hospitals. A few days later after many tests, and IV’s all over his tiny little body, we were told he had Tetralogy of Fallot. He would need at least 2 open heart surgeries but would lead a normal life with a normal life span if everything went okay.
Austin spent a week in the NICU and then we finally sent home with a apnea monitor and instructions to what to look for. That week was great, gave me a small idea of what it would be like to have a new born and a 15 month old.
A week later, Austin had his first scheduled cardiologist appointment. We went into town, and his cardiologist immediately sent us back to hospital in Mobile. Did not say anything was wrong just said he needed to be looked at by them. So we drove the hour and half and when we walked through the doors, nurses came running over snatched him and said he was blue and was having a Tet spell. He looked the same to me. We completely missed the faint blue tent around his lips. He was prepped for transport again and life-flighted to Tulane Hospital in New Orleans Louisiana. We had to drive because there was not room for us. So we had a 3 hour drive ahead of us, so we left immediately in hopes of meeting him there.
We arrived at Tulane and were told that Austin’s heart was not doing well, and he would need emergency surgery. He was 2 weeks old and his weight was right under 5 pounds. They did emergency surgery the next morning, It was October 22nd 2002. It was a 10 hour surgery, where they placed a BT shunt. Said that was all they could do because of his size. Surgery went great, and Austin did fine. I was okay too. Austin spent 1 week on the ventilator and 1 week on the floor, and then home we went. Again we were told what to look for and we were on Aspirin, and Lasix.
The next few months were normal. Austin had a heart cath and he gained a little weight, and got to know his older brother. We had doctors’ appointments, Cardiologist appointments, and WIC appointments. Austin was having these crying spells that were different for me. He would turn a little blue, and get really tired after. I told all the doctors, but they said it was normal for a baby to get blue while crying. But this was different. Something in my heart told me it was different. I listened to myself while pregnant and I was right, and now I know something is not right. So on Feb 8th 2003 we went into the cardiologist again. This time he had a spell in the office while on the o2 machine. His o2 had dropped and our doctor grabbed the oxygen. We were life-flighted to Tulane New Orleans again and were told his shunt had clotted off and he would need emergency surgery again. We were in shock. Austin had his second heart surgery Feb 10th 2003; he was 4 months old and weighed 7 pounds. They did a full Tetralogy Repair and closed the hole in his heart. It was a long surgery. 18 hours to be exact. We were not expecting what happened after the surgery. He was so swollen, and his color was horrible. The doctors said that because it had only been 4 months since the last surgery, recovery was going to be horrible. And they were right. Austin spent 30 days on the ventilator. He had pneumonia twice and a collapsed left lung twice. He was having fevers but never showed a sign of infection. We attempted to take him off the ventilator 7 times before he finally got off. We spent another month in the hospital for all of his feeding, and weight issues. But finally we went home. He was on methadone, lasix, and aspirin. They said he might need a new valve FAR in the future. And that he should be fine.
A whole year went by. We had a few heart caths, three I think, but it was all in the normal day to day things. It was great. I got divorced, was taking care of both the boys and living the best we could. I was even dating again. It was almost normal. Then yet another cardiologist appointment. I had a bad feeling about this one, and did not know why. I just did. Went in for his echo, and they said that his valve was really leaking and he needed to schedule surgery and have it done ASAP. So we called Tulane and scheduled it. It was a few days away. March 14th we drove to New Orleans, 15th we had pre-op and the 16th he had his 3rd open heart surgery. Austin was 1 year 5 months and weighed all of 20 pounds. They replaced his pulmonary valve with a pig valve, and placed a stent in his left pulmonary artery. We knew he had stenosis after the 2nd surgery but they said it looked okay and with the new valve it would get lots of blood flow. This surgery was 6 hours because of all the scar tissue. Everything was a success. Austin spent one night in the PICU and two days on the floor and after just 3 short days we were home. I WAS AMAZED. After the 2nd surgery I packed for a month. And did not need any of it.
We were having cardiologist appointments every three months, and every month in the winter. Austin has had his RSV vaccination every winter since he was born. Just in case. It was December 2004, at one of our cardiologist appointments they could not longer see the left pulmonary artery putting blood to the lungs. So we were sent for a heart cath. We were told that his stent in his left pulmonary artery had clotted off. That after this long with no blood flow his left lung is barely functioning. We needed to get ready for a ride, and get on the heart and lung transplant list. His right lung, would work for a while, but after the left lung dies, the right lung would be overworked and give out also. And because of his arteries to the lungs being nonexistent and the other being very weak he would need a complete transplant. We were devastated. We went into a follow appointment with Dr Joyce. We love Dr Joyce. He was Austin’s cardiologist at New Orleans and now he was our cardiologist in Jacksonville Florida. We all moved the same month.. THANKS GOD. He was not happy with the outcome of that meeting and thought there had to be another way. So he went to work. And called us January 2005 to say he found a doctor in California that was doing artery construction and sent him Austin’s file. He was ready to reconstruct Austin artery and save his left lung. NO TRANSPLANT. So late Feb 2005 we flew to Palo Alto California to meet Dr Hanley. Lucile Packard Children’s Hospital is wonderful. They have a CVICU and you have a private nurse 24 hours a day. It was so great. Austin had his 4th open heart surgery. They placed a shunt from his aortic to the left pulmonary artery. There is more pressure and it would force the artery to open faster. We spent a week in the hospital before flying home to Georgia. By this time I had remarried and my new husband is Military. THANKS TRI-CARE. They pay for everything when you travel for medical.
We were told within 6 months Austin was having his 5th surgery to reconstruct the artery but because he does not grow fast it was 10 months. Austin had several heart caths to check his progress in those 10 months and did fine every time. And in December 2005 (right before Christmas) we flew to California for open heart surgery # 5. They reconstructed his artery and tested his lung. They also checked his pig valve and said it has minimal leakage and is in great shape. So they did not have to replace it. Austin’s artery was almost normal size. We spent a week in the hospital again. But Austin did great. He had two radiation lung scans which showed minimal growth but that the lungs were okay. The right was great, but the left we would have to wait and see.
Going home was great. Austin was newly healed, and setting off alarms. I had to have letter showing the reason for the radiation. But the airplane was fine and Austin loved it. Then driving home, we live on a secure Submarine Base and Austin set off the radiation alarms. It was so fun for him.
Austin had another radiation lung scan in Florida and it showed we saved 2/3 of his left lung. We were hoping for ½ so YEAH. Austin is great now. We recently move to Washington State, and have new doctors and new medical help. We will still go to Lucile Packard in California depending on what they are doing. We are very lucky in that we can go to the best doctors in the world, and it does not cost us a dime. We are so glad that Tri-Care covers step-children 100%.
Austin is 4 now. He weighs 30 pounds. He goes to preschool, goes to gymnastics, and is the sweetest kid ever. I have learned so much over the last 4 years that I would never trade for anything. We know Austin has at least 3 more open heart surgeries in his life time and so many heart caths we can not even count them. We don’t consider them surgeries, just procedures because we have so many. We keep life normal for him. No one would even know Austin has a heart condition unless you see his chest or ask him. He is a completely normal child.. We give thanks for the medical care we have received at all the different hospitals across this country we have been to. Whether it was Alabama, Louisiana, Florida, Georgia, California, or now Washington we have been blessed with great people with huge hearts.
Thanks and many prayers
Valeri
Mom and Navy Wife
Derek HH 5 years old
Austin Tetralogy of Fallot with severe stenosis of the LPA.
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