Gina's Heart Diary

Our Little Gina was born on March 19, 2000 with a Congenital Heart Defect. She underwent a 6 hour surgical repair that saved her life. Without this repair she would not have made it to her first birthday. Today she is a walking (and running) miracle. She is currently on no medication but still has minor problems with her mitral valve. In the future she may need further intervention but right now she doesn't need it. To get a better idea of what her defect consists of you can go to this site. I have kept the following diary of most of her cardiology visits in hopes that it can help a parent with a newly diagnosed child understand what may be in store for them. If you have any questions regarding anything you read here feel free to Email me anytime.

March 21, 2000- After giving birth to our little Gina 2 days ago, we were told she has a heart defect. We were waiting to be discharged when the pediatrician came in and informed me that he heard a murmur in Gina's heart. He ordered an EKG and chest X-Rays, and called in a Cardiologist.

The Cardiologist arrived from St. Joseph's Children's Hospital about an hour later. He did his exam and asked us to discharge and come over to his hospital ( 1/2 hour away) so he can do an Echo. They didn't have the right size equipment at the hospital we were in.

We arrived at the hospital about 2 hours later to do the echo. Gina was extremely fussy so I had to lay on table with her to nurse her so she would calm down. The doc came in during the test and he knew right away that it didn't look good.

Dr. Messina informed us that she has a large hole in the middle of all 4 valves, which we now know to be AVSD also known as AV Canal. We were then informed that she would eventually go into Congestive heart failure and be placed on medicine. He has estimated her open heart surgery to be done at 4 months of age. In the meantime we just have to monitor her and pray.

March 29, 2000-Today was Gina's 2nd visit with Dr. Messina. Her breathing is very rapid and her heartbeat is irregular. It's time for the meds already. She was put on a twice daily dose of digoxin and a daily dose of lasix. She is eating well and gained a few ounces so that is a good sign at least. We have another appointment next week to see how she is taking to the medicine. Hopefully after that we will go every two weeks instead.

It's been tough at home. Gina has a big sister who is in school and exposed to lots of germs. The challenge is getting Tara to remember to constantly wash her hands. Tara has allergies so it's hard to know if she catches a cold. She also takes her shower right after school from now on. Tara seems to be adjusting well and doesn't seem to have any animosity towards her baby sister.

April 5, 2000 -Today was Gina's third PC visit. Her SAT was 97 pulse rate 147. The meds have been helping her breathing. Only problem is that she hasn't gained any weight. I may have to start her on a 24 calorie formula, which means I'll have to stop breastfeeding. Not too happy about this, I've really been enjoying the closeness we share during feedings.

Doc says looks like surgery will be done at 2mnths instead of 4 months. supposedly there is a 5% mortality rate. Her riskiest time is 2 days after the surgery. 2 months is right around the corner, I'm really getting nervous

April 12, 2000 - Things are still going well for Gina. Heart rate is 137. Blood pressure 83/56. SAT 97. We are looking to have the surgery in June. I decided to express my milk and feed her from the bottle , it seems it doesn't take as much effort for her as it does on the breast

May 3, 2000-Gina's numbers are well.....BP 75/22, SAT 99. Main problem right now is her weight. She is only up to 8 lbs. Doc wants her on high calorie formula, so that means Breastfeeding becomes the supplement and bottle feeding is her main source of nutrition. I'm a little bummed about that. I won't give up on breastfeeding just yet. I'll keep up a supply for comfort feedings and hopefully go back to breastfeeding exclusively after she is out of the woods. (note months later: if I had known what I know now I would not have given up breastfeeding)

May 10, 2000- We had to take Gina in for an unscheduled visit today. Early this morning she was breathing rapidly . Called the doc and he asked us to bring her in. He says it's mild heart failure. At least it's not hypertension. On a good note...she gained a WHOPPING 7 ounces this past week. He increased her meds and said see you in two weeks. Unless we get a surgery date sooner.

May 24, 2000- Gina is up to 8lbs 10 oz. The Cardiologist spoke with the surgeons and they want to do the surgery at 3 months of age, which means in 3 weeks. They still have to decide where to do it, he will call us as soon as he has the date.

Gina has started sweating a lot when she eats . The doc increased her medicine again. He also increased her formula to 27 calorie. She is gaining but not as much as they would like her to.

June 07, 2000- Today we started the ball rolling on setting up a surgery date. We decided to go to Mt. Sinai at the recommendation of our pediatrician. They will be calling us to set it up. She had an echo today and slept thru half of it. All her numbers are good. Her SAT was at 100. That was great. She is up to 9lbs 2ozs. She is really eating well.

June 30, 2000-Gina's surgery is scheduled for July 10th. She met the doctor who will be caring for her during her hospital stay. She also had a sedated echocardiogram. It was so hard seeing her so out of it like that. Her blood pressure was 76/40, SATs 93 and she is now up to 10 pounds. Our next visit will be the 6th for her pre admission testing. That will be a tough day. I'm hoping it doesn't take long to draw blood. We also met Dr. Nguyen , the surgeon who will be performing her surgery. He seems like a very nice man. I couldn't take my eyes off his hands knowing they will be holding my little girls heart.

July10,2000- Gina went into surgery at 8:00am. It lasted 5 hours. she woke up after a couple of hours. We couldn't sit with her too much because she would get upset that we weren't picking her up. It was so hard seeing her with that silent cry. On Tuesday morning they removed the breathing tube. They then inserted feeding tube since she wouldn't eat much right away. On Wednesday they removed the rest of the tubes but left the NG tube in. She needed to go on heparin because they couldn't get a pulse in her left leg so we had no choice but to put a new IV in since the old one wouldn't work anymore. It took 5 sticks to get it in :-(. They also had a hard time keeping her blood pressure down so she is now on vasotec. There is still mild to moderate leakage in her mitral valve so we just have to wait and see what happens. If it gets any worse they will have to intervene. Other than those complications she is doing really well. She is back to her old smilin and gigglin self. I can finally feed her without her breaking into a sweat , it's so wonderful.

July 19, 2000- Gina had a follow up visit with Dr. Messina today. We still had a hard time finding a pulse in her left leg but it will improve over time. Her SATS were at 100, heart rate is good. She still has some leakage in her mitral valve and she also has a leak in her VSD. We will go for an Echo on the 24th to see how things look.

August 2, 2000- Lasix has been reduced to one dose a day. She still needs vasotec for the leak in her heart valve. There is a 10 % chance she will need surgery on that valve. We went back to regular calorie formula. The pulse came back in her leg.

August 16, 2000- We got rid of the lasix today. Next will be the digoxin. We have to take her to a developmental doc in a few weeks to be evaluated. She now weighs 12 pounds and is 25 inches long.

September 27, 2000- Today was a good visit. Uneventful. Her numbers were good, bp 80/54, HR 133, and weight 13lbs. 11 ozs. We will have an echo done on November 1st to see how the leak in her valve is doing. Her legs have normal pressure and she can now stand on them. Most importantly she is now off the digoxin. Only the vasotec is left.

November 1, 2000- Gina is doing very well. Her EKG was great. She still has a leak in her valve but he believes it has remained unchanged. Hopefully she will outgrow the leak. For now she will stay on the vasotec. She also had an echocardiogram today which she was very good for. She watched TV and her Grandpa the whole time. The Echo shows that the leak hasn't worsened.

January 3, 2001- What a way to start out the new year. From the sound of it Gina's leak seems to be better. We will know more when she goes for another echo next month. After that she may be med free. Her heart rate is 137, BP 93/47. She now weighs 17 lbs and is 28 1/2 inches long.

February 28, 2001- Today Gina had an echo. The impression I picked up was that everything was well. We will find out more at her next visit.

March 21, 2001- Gina's visit went well. The doctor took her off the vasotec. She will have another echo in June to check on the size of her heart to make sure she can handle it without the meds.

June 29, 2001- Gina had an Echocardiogram today. She was sedated this time since it would have been hard to get a really good report otherwise. It took about a half hour for her to fall asleep. After the echo was done we took her to recovery to wake up. The rest of the day at home she looked like a drunken sailor. She couldn't walk unassisted without falling down. By the next morning she was back to her old self.

July 11, 2001- The news couldn't be any better. Gina's heart has not become enlarged from being off the meds and is tolerating the leak in her valve very well. The doc feels she won't need any further intervention surgically or medicine. The best of course was saved for last when he said "See you in 6 months". That is the longest she will have gona without a cardiology visit and we couldn't be happier.

January 9, 2002- Our little girl is getting better and better every day. This visit was wonderful. She still has a leak in her mitral valve but it hasn't changed, which is what we wanted to hear. She now weighs 26 pounds and is 33 inches long. The doc couldn't be happier with her growth. Her next appointment will be an Echo in July.

June 25, 2002- The echo went well. We were able to get a clear picture and report without having to sedate Gina. The mitral valve leak has stayed the same which is what we wanted to hear. We know it won't get better but as long as it doesn't get worse she will do just fine. Our next visit will be with the doc in January.

January 17, 2003- This will probably be my last entry in Gina's heart diary. This visit was absolutely wonderful. All of Gina's numbers are great. Her leak is still there but minimal. The doc strongly feels that Gina will not require any further surgery. He even gave us the go ahead to enroll her in dance class or whatever else she wants to do. After her next echo in July we will graduate to yearly visits which will probably continue indefinitely.