KENLIERetrun to 22q Stories
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After a totally healthy uneventful pregnancy Kenlie was born at 39 weeks on December 18th 2008. She was a beautiful little baby who looked perfectly healthy. The night she was born her oxygen saturations dropped while in the nursery, long story short she had an echocardiogram done and her Dr came to tell us they thought she had a heart defect that was pretty common but they were going to send her to St. Louis Childrens Hospital to be evaluated. We were pretty devestated. That is not what you w ant to hear about your newborn! While at SLCH she was diagnosed with Tetrallogy of Fallot and a cleft pallet. They decided they wanted to check her for DiGeorge Syndrome because of those two things and they said her ears were a little lower and smaller than normal and she had long fingers. They said these were also signs of DiGeorge. So she had a FISH test done which came back positive. Kyle and I and our 2 year old little boy are all negative. I remember my husband telling the cleft pallet nurse that we had a few hurdles to jump over but that we would get there. We had no idea what we were in for! Kenlie was a horrible eater, in fact from the day she came home she would sleep all night if I didn’t wake her up to eat. We had to fight her to get a couple ounces down. They told us that babies with DiGeorge were usually not the greatest eaters plus she was a heart baby so she had a lot against her. In Feb when she was 2 months old she ended up back at SLCH for aspiration pneumonia, in April she ended up back there with paraflu, with the paraflu she had so many secretions that she was constantly having to be suctioned so she decided she was not going to swallow anymore. We had at put a NG in. She was home for 3 days and started having seizures, she was sent back to SLCH, that was the start of our craziness! She was intubated because of her seizures and when they extubated her she went into cardiac arrest for 23 minutes, the longest, scariest 23 minutes of my life! After all that she ended up with a trach, they said she had tracheomalacia and broncheomalacia. In June she h ad open heart surgery to repair the tetrallogy, she did great through that. In July she went back to SLCH for resp distress. She was there until the middle of September and was put on a vent. She had a G-button placed in Aug. So we have been home since Sept, on a vent which we are hoping to start being weaned off of this spring. We have battled many resp infections this winter but have been blessed enough to be able to stay home and get well instead of ending up in the hospital again. Kenlie is delayed with many developmental things, one reason is because kids with DiGeorge are a little delayed anyway, but she also spend so much of her life laying in a hospital bed she really wasn’t able to learn how to do things. She is 15 months old today and I am amazed at how far she has come just in the last few months. She learned how to sit up on her own a few weeks ago, that is huge for her! We are going to vent clinic at the end of the month to hopefully start weaning her from her vent. Not sure how long of a process that will be but it will be worth it regardless of how long it takes. Not sure how long the trach will stay though. She has speech therapy once a week to work on swallowing, she has OT and PT once a week also. Kenlie is a very strong and determined little girl, she has had to be in order to get through everything that she has been through in her short little life! She is our little fighter and her and her brother are the light of our lives!