Saturday, February 9, 2013

Feb 9- CHD Awareness- Kaitlyn's Story

Kaitlyn Marie entered the world at 6 lbs 7 ounces on August 25th, 2011. After having 3 younger brothers and 2 sons, I finally had a beautiful baby girl!!! Kaitlyn passed her Apgar tests with flying colors and quickly became the model infant! She was content being swaddled while her family cooed over her, only crying when she was hungry or dirty. Two days later, we brought our sweet baby home. Little did we know that 3 weeks later, our lives would be turned upside down! September 16th, she had gotten to where she didn't want to eat, she was very pale, listless and making a grunting noise when she breathed. Her pediatrician wanted us to bring her in right away. When we arrived, they took us straight back to a room. Upon assessing her condition, they decided to check her oxygen level. She told me to pick her up and hold her, then she quickly went to get another pediatrician's opinion. Both doctors came in and conversed amongst themselves, then her pediatrician leaned over and told me that she didn't want me to panic, but they had called an ambulance to take us to Children's. When we arrived at Children's, they whisked us back to a triage room and started poking and prodding on my tiny baby. One of the attending doctors asked if I would consent to a spinal tap to check for meningitis, which I did and thankfully it was negative. They brought in a pediatric cardiologist to do an echo. I remember thinking that it was taking WAY too long! After he finished his exam, he came over to talk to us. It was all a blur. I remember walking behind my little baby in the huge hospital bed as she was being wheeled up to the PICU. I remember them telling us to wait in the waiting area while they got her "settled in". I vaguely remember the cardiologist sitting down with us again and showing us a drawing he had done of Kaitlyn's heart. I remember seeing his mouth move and hearing his voice but had no idea what was saying. I felt like I was in a fog. I had no idea what was going on! All I knew was that our world had been turned upside down! In a nutshell, Kaitlyn has what's called Shone's complex. We were told it's a rare disorder consisting of at least 4 heart defects in the left side of her heart. Her defects are: a Bicuspid Aortic Valve, Hypoplastic ascending aorta, Patent ductus arteriosus (PDA), mitral valve stenosis, fenestrated atrial septum, coarctation of the aorta, and multiple ventriculal septal defects (VSD's). She underwent her first surgery September 29th, 2011 at 5 weeks old. They repaired her coarctation and put a pulmonary band on to try to even up the pressures going to her lungs. Since that surgery, Kaitlyn has been nothing short of a miracle! Looking at her, you'd never know! She left the hospital on .5mg twice a day of Enalapril (a blood pressure medicine), which has NEVER had to be adjusted! Today, she's an active 17 month old and is right where she's supposed developmentally. She walks, she talks, she dances, she climbs, she does the "Itsy Bitsy Spider". Her weight is on the lower end. She's in the 3% for weight for babies her age. She had an appointment last week with a nutritionist. Today, she weighed 17lbs 15 ounces; up 13 ounces from last week!!! We'll be going to the cardiologist again in March. We saw him in October, and he decided that since the band was still doing it's job and since she was doing so well, let her grow!!! I'll call in February to make that appointment and we'll go from there! Aside from her heart condition, Kaitlyn has some chromosome disorders. She has a chromosome 3 deletion which she inherited from her daddy and a chromosome 13 isochromosome. The geneticist she sees told us that not enough is known about our DNA. They can't blame the heart condition on this chromosome, but they can't rule it out either. Either way, she's ours and she's PERFECT!!!

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