Thursday, August 03, 2006

Slevin family story submitted by heart mom Elayin Slevin.

My husband Jay and I were at our 20week ultrasound at Bethany Birthing Center admiring the little creature on the monitor when the tech started acting a bit weird. We were sent out to wait in the waiting room while the tech was “checking some things”. We were so scared because we knew that ‘something’ was going on as we didn’t think being told to wait in the waiting room was normal. We waited an excruciating 20 minutes or so when I finally went in and told the tech that he better tell us what was going on! He told us that when he was looking at our baby’s heart, the Left Ventrical looked like it was enlarged to be about the same size as the rest of the heart. He wanted to refer us the Phoenix Perinatal Associates, which are the leading specialists in Phoenix. This was Friday and our appointment was Monday. Talk about a VERY LONG weekend!

We went in to our appointment on Monday and after the Dr. took a look at the ultrasound, they confirmed that our baby had Hypoplastic Left Heart Syndrome. Our babies Left Ventrical was presenting enlarged instead of “shrunken”, however it was the same issue. . .the Left Ventrical would never be a functioning chamber.

We were given the three choices that most people in this situation get. . terminate the pregnancy, a three stage surgery, or heart transplant. We never considered terminating and felt that instead of waiting for a heart it would be more proactive to do the surgeries. This was devastating to us, however we felt that by keeping a positive attitude about it, our baby had the best chance of surviving. We did a lot of research about this heart defect and a lot of praying, and finally came to terms with what we would be dealing with once our baby was born.

Noah Jay Slevin was born on November 27, 2005. He was doing so well when he arrived, that they let him stay at Good Samaritan Hospital for the night before transferring him to Phoenix Children’s Hospital the next morning. He did pretty good his first day of life, but started having some issues towards evening, and when they couldn’t get in a pic-line, and I kept hearing my newborn scream and scream, we had to leave. When we got there the next morning we found that he had stopped breathing from the meds and he had been put on the ventilator. For the next four days it seemed so up and down. They were trying to get everything stabilized for his surgery.

They decided to do his surgery on December 2nd. (We have a picture of the clock at 8:17 am when they took him.) It is pretty scary to let go of something so precious. I trusted his doctors completely, but I’ll never forget the feeling of kissing him good-bye, not knowing if we would ever see him alive again. They say that survival of the Norwood is 85%, however, that 15% seems so huge when you are talking about your baby.

The surgery went well and Noah started thriving after that! We were told by a few nurses that these heart babies sometimes have feeding issues and never breastfeed, however, after Noah failed his bottle feeding sessions with the speech therapist, I talked the Dr. into trying to let him breastfeed and he was a natural!! Noah proved all of those nurses wrong!! He is such a strong little baby. He was out of the hospital in two weeks, 6 days after being born and having open-heart surgery. It was sort of weird to finally be able to try and get to know Noah three weeks after he was born. We adjusted fairly quickly to giving him his meds and learning his schedule. I think it may have been easier for us to deal with as we had no prior knowledge of what raising a baby would be like. A lot of people ask me how we do it with his meds, and the dr's appts. etc. . . but really, you just do it! It's not like we have another alternative and every parent does what is best for their child!

Noah’s second surgery, the bi-directional glenn, was performed on March 22nd. Like the first time, it was torture to let him go. I think worse, because the first time I didn’t know what it felt like to hold him in my arms, and nurse him and love on him. For the first surgery he was already on a ventilator and sedated. The second surgery I had to physically hand him over to the nurses while he looked at me. It was physically painful to have to that. (I’ve heard the 3rd surgery is the worst for this, but we have two years to prepare for that).

Noah did great through the 2nd surgery and despite developing a pneumothorax afterwards, he was out of the hospital 7 days after they operated!!

Noah is 7 months old now. He has two teeth, he’s a fat, rolly-polly baby, and he sits all by himself. He laughes and giggles and has just started saying Dadadadadadaa. He is so smart! I know how blessed we are to have such a healthy baby despite his having half a heart. I don’t know if it’s true, but I heard a rumor that 1 in 10 couples that find out their child has HLHS, terminates the pregnancy. If those people could see our son, I think that would change! Not that it’s been all candy canes and rainbows, but having our son is definitely worth the trials and we know that he is going to live a very rich and fulfilling life! Only God knows how long any of us have here on earth, but to us it doesn't matter. We just live each day at a time, and enjoy every second that we have with Noah!!

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