(Written February 2001)
My name is Nora and my Hubby is Grant. We have two children Hanna who was born September 1998 and Sara who was born April 2000. Hanna was born 6 weeks early (4lbs 9oz) due to high blood pressure, which I had through out the entire pregnancy. I had to be induced due to severe toxemia. We were blessed though and she had no complications and after 13 days in the NICU was able to come home. She was totally age corrected by the time she was a year old. Sara was born 3.5 weeks early (7lbs 4oz) no other reason why, other than she was ready. I did have the high blood pressure again and was on some bed rest. No toxemia or anything like that this time. We had no idea she was anything less than the perfect baby until she was 10 days old. I took her for the regular 10-day check up and I was told that she had a heart defect. A hole in her heart. My doctor booked an appointment for us to see our Pediatrician. I was sent immediately, for x-rays. Of course crying uncontrollably the entire time. I was then informed by the radiologist that she had wet lungs, I should go
home and wait for my doctor to call. We were told that she had a
build up of blood in her lungs from the VSD. My doctor was really
wonderful he called again later that night to check on me and Sara and let us know if we were concerned at all just to page him. Of course at this point I didn’t know if she would make through the night…..I didn’t know any better. I cried for 3 days straight, I just couldn’t help it. The very next morning we went to our wonderful Pediatrician, and he explained much more clearly what was going on and what we could sort of expect. He also told us that she would never, never have anything happen over night. She wouldn’t just die on us. That was the best thing he ever said to me. We again were very fortunate and were able to get into the BC Children's Hospital to see the Pediatric Cardiologist, the very next day (day 3 since we found out). At that time they did the ultrasound and ECG to discover that she has a medium to large sized and small sized hole in her heart (VSD’s) along with two muscle build ups (muscle bundles) on the valve going to the lungs.
(Just under the pulmonary valve) She was put on Lasix and Digoxin. At that time we were told she would most likely have the open heart surgery by the time she was 6 months old, if not sooner. The odds given to us on the surgery was 99% success and survival. Could you ask for anything better? For the longest time I couldn’t get past that 1%. I figured someone’s child had to be the one- percent. I was even afraid to write in Sara’s first year calendar, for fear it would get cut short. But people encouraged me to write in it anyways and I am so glad that I did. June 7th we were back at the Children's Hospital for 3.5 hours in total. Sara had another ECG and another Ultrasound of her heart. Nothing has really changed. The hole of course is slightly smaller (very, very slightly) And the muscle bundles are about the same but are at least helping a bit. They help to slow down the flow of blood to the lungs. He was concerned how fast she was breathing, which means that the flow to the lungs is still to high, but the fact that she is still gaining weight put his mind a rest for now. Surgery is on hold for now. If we can wait, meaning she continues to have good progress, the hole may close itself and they would only have to remove the muscle bundles. That is best case. It may be in 6 months; it may be in a year or more. I hate the waiting game. Over the next few months we had the usual ups and downs. The struggles with the weight gains, usually only about 2-3 oz a week. But luckily there were always, except for one week, gains. September 1st we went to the Cardiologist again and it was...........not bad, not scary hmmmmmm........ I guess just stressful. We had the ECG done again and her little heart is beating quite normally, which is great. Then we had the ultrasound done again, and they didn't really tell us anything about that except that the left side of her heart is enlarged. They don't seem to be in a panic about it though, so it can't be that serious. I hope. So we had x-rays done, I guess to see how enlarged her heart is. That was terrible they strapped her down and stretched all out. Boy did she scream and did I ever cry. I hated that, probably more than she did. We were told that things aren't adding up. She is healthy looking and acting, but isn't gaining the weight. So they want to admit her to the hospital for 2 days (*sigh* & *cry*) to observe her. Anyway out of this stay we found out that she is taking a fairly good amount of food and she is a happy and otherwise healthy baby. So we still watch and wait and go to the Ped doc once a week for weighs and check ups.
November 3rd ~ The PC appointment went really well. We had another ECG and ultrasound done. It showed that her heart is the same size as it was in September, which is good cause it was enlarged on the left side then. That means that her heart doesn’t have to work as hard with the extra blood flow. The hole its self is getting smaller. The muscle bundles are staying the same size, which is also good, for now. The PC is very pleased with her growth and eating habits. We don't have to go back to him for 6 months unless something starts to happen, like lack of weight gain or some of the other symptoms appear. The PC also feels that within the next several months we can stop the Digoxin and then the lasix. Surgery doesn't seem to be in
our near or possibly even distant future, as things stand. Things can always change. He feels that she may never need the surgery for the holes but for the muscle bundles and that can be in 2 years or 10 years. So are still Watching and waiting, but with less of the intensity. We can start to go to the ped doc every other week now. So this is all good news. But I hate the thought of Sara having to have surgery later on............hate it alot!! I don't want her to remember the surgery or any of it.
**sigh** you can't please me can you? Ha ha ha At the end of November we started to decrease the digoxin in hopes of
having her off of it in January but we had a slight set back due to a cold. As of January 17th, 2001, we stopped the digoxin and mid April we were able to stop the Lasix too. May 1, 2001 we went back to the PC for a one year check up. Everything looks really great. Her muscle bundles are still minor and the holes appear to be getting smaller still. The PC told us that we didn't have to come back until she was 3! I was stunned and took minute to think about it and then said "That is in 2 years!" The PC just looked at me like Yes 1+2=3 ha ha ha. It was quite a moment. There still is the risk of surgery one day it may be when she is 3, 10, 19, 35 or never. We don't know, but for the moment we are going to live in the "Sun". Nora
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