Jack

Jack was born with aortic and pulmonary stenosis. We did not know that he would have anything wrong with his heart before he was born, but we knew that something would be wrong. Early on in my pregnancy I started bleeding and went to the doctor, had a sonogram and he said that I had placenta previa and he also noticed a cystic hygroma on the baby’s head—a large water filled cyst that attaches itself to the back of the neck. So he sent my husband and I to a neo-natal specialist who noticed many little things wrong with the baby and told us that this baby would probably not make it and suggested that we terminate the entire pregnancy. Well, I was so distressed with that news and scared to death to have this baby, but in my heart I knew that I could not in good faith have my first pregnancy terminated like that—just the thought of it made me shiver, and I called and told the doctor that we decided against terminating the pregnancy no matter what was wrong with it, and if I was not meant to have this baby then I would miscarry. So I kept seeing the doctor, having monthly ultrasounds, and by my seventh month of pregnancy the cystic hygroma started to get smaller and smaller. The doctor said by my ninth month that he couldn’t even see it any longer and that my little baby had a chance after all—but never saw anything wrong with his heart.

Well, on July 24, 2002 Jack was born 7lbs. 1oz., 21 inches long with just slight webbing on the back of is neck from the cystic hygroma. Jack did not cry right away and that alarmed the OBGYN, so they rushed him to the nursery and once the pediatrician came in, he gave us a handful of news. First that little Jack had webbed toes (his second and third toe on both feet), that he had an undescended testicle, and a very loud heart murmur and that they would be doing an echo. The echo was done and it was then that we learned that Jack had aortic and pulmonary stenosis. We did not know when he would need surgery on it, just knew that he would eventually.

Jack was a poor eater from the very beginning; he would tire out during feeding, sweat a lot, and just fall asleep. Jack was only home for 5 days before he was sent back into the hospital and it was then that he went into congestive heart failure. We were on an ambulance to New Orleans to the nearest pediatric cardiologist before I knew it—me and this little baby that I hardly knew, but that I loved so much and I was scared to death for him. Jack was going to need what the doctors hoped would just be a balloon cath to open his 2 valves up, but after several attempts, the pediatric cardiologists came in and said that he would need open heart surgery.

Jack was 2 weeks old at this point and he had the surgery. The surgery went well, just not as well as they had hoped; they were unable to close his chest after surgery because he had stopped breathing and they just said that he was on very rocky ground at this point and they did not know what to expect. I remember that my husband and I went in the PICU to see him and he did not even look like the child that I had given birth to, just a few weeks before this time. Jack was covered in wires and leads, he was intubated from the respirator and that alone is scary looking enough, and he looked very swollen.

That night passed and Jack was still here and was doing better, and after 3 days they were able to close his chest. After that he got pneumonia and E. coli from his chest being opened, so he was treated for that while still in ICU. He was not able to come off of the respirator for over 2 weeks, but he finally did and a month later we got to go into a real room. He was okay, but still a poor feeder, so I had to learn how to feed him through an NG tube and how to put the NG tube from his nostril all the way to his stomach. I never knew that I had it in me to do any of these things, but you never know until you have a sick baby, I suppose.

After a total of 6 weeks of being in a hospital 4 hours from home, we got to go home, and he was on and still is on a lot of medicines. It was like taking him home for the first time again, only a little scarier. I had the help of family and friends, my Mom and Dad live right around the corner and without my Mom’s help I would not be here today. Jack was hospitalized twice at home for failure to thrive, I couldn’t understand why he wouldn’t gain weight even with an NG tube, but he just wouldn’t. We made it, until 3 months later when Jack could not tolerate his formula even through the NG tube, he would scream with terrible stomach cramps, and had reflux on top of everything. We went back to New Orleans and they did surgery for the reflux—called a Nissen, and did a pyloroplasty because he had a narrowing at the bottom of his pylorus which cause him to have delayed gastric emptying, and they put in a feeding tube—or a button as some Mom’s like to call it. After that Jack was put on 24 hour feeds through the feeding tube and he is still on them TODAY!! He has a serious aversion to food, but that is another story—one day he will eat by mouth, we pray!!!!

We made it to Jack’s first birthday, and we were so thankful, but scared too. Jack only weighed 12 lbs. and still could not even hold his head up, he was getting early intervention therapy, but he just had not gained ground at all by this point in his life. 2 weeks after his first birthday, I noticed Jack fell asleep on the floor and kept sleeping all day, and just not with it. He got really swollen by that night and the next day I called the PC and told him about it; he told me not to worry that he was fine, but I kept on insisting that he was not okay and that he shouldn’t tire out from doing nothing and as for the swelling to give him extra Lasix. I did and then nothing changed, so the PC sent us a Holter monitor through the mail and told me to put it on him and mail it back; I did and he called me back saying that Jack was having a lot of arrhythmias and that he needed to see him. We drove to New Orleans, admitted him and saw the doctor; he did an echo and before my eyes the doctor turned around and said, "Jack is going to have to have heart surgery", and I thought for the arrhythmia’s right? And the doctor said, no his aortic valve is 90% closed; so we were right back where we had started from and Jack had another open heart surgery almost a year apart to the date and we were told then that his pulmonary valve had just disintegrated. At this point we were also told that Jack would need a mechanical aortic and pulmonary valve when his heart gets to be adult size, when he is between 10-12 years old. What about his arrhythmia’s we asked? Well, they told us we put him on medicine and we will watch him. Okay, but we get to go home because the surgery was a success and at that point I was ready to hear any good news.

Christmas came and went and Jack was gaining weight and doing really well; Right after Christmas, Jack started sitting up, clapping his hands, and playing and smiling. But then things got bad again, in February Jack and I were watching Sponge Bob—a character that he has always loved for some reason, and he started turning blue around his lips, and sweating a lot. I rushed to the doctor, he listened to him and said that Jack was having arrhythmias and he put him in the hospital and said that he needed a cardiologist that specialized in arrhythmias, an E.P. doctor. New Orleans did not have one, but Houston did at Texas Children’s Hospital. They flew us there in what seemed like minutes. Once again, new hospital, new doctors, sick baby, it was all so familiar, yet very scary. Jack was put into ICU and the EP doctor came in and he was very nice, he told us that he would try medicine and get his heart rate down and hopefully not have to do surgery. Jack heart rate was 230 bpm at this point and even the doctor was a little freaked out. My husband and I were told that to do surgery on Jack at this point in his life for the type of arrhythmia that he had (atrial ectopic tachycardia), would be very dangerous and that Jack may have a stroke during the procedure. The doctor said that it would be ideal to have the ablation when he turns about 4 years old, and hopefully the medicine will work until then. The medicine, Amiodarone has many bad side effects so we have to be careful, but it worked and is still working.

Jack was diagnosed with Noonan’s syndrome this past June by Texas Children’s Hospital and I have been learning all that I can about that. It felt good to know what he did have because for a long time we just knew what he did not have after running many genetic tests and they would all come out negative and then we would start all over again. Jack gets physical therapy, speech, occupational, and developmental therapy all at home 4 times a weeks. He has started standing up with help and is getting really good at it. We still go to Texas Children’s every 3 weeks to do a holter to check on the arrhythmias, and we are watching his valves to make sure that they will not need another repair before the replacement, and he is still on the feeding tube, so slowly but surely we are getting better.

Jack is a true miracle and has survived things that even doctors did not think were possible. I have learned more from my little Jack than I have ever learned my entire life. I thank God everyday for Jack and everything that he has overcome.