Friends Page, Bayleigh

Bayleigh weighed only 4lbs and was 16in long. I had her via c-section and they had to put me under completely so I didn’t get to see her for 3hrs after she was born. When I woke up I asked my husband if he had seen her and he said ” She is so beautiful Annie” When I saw her for the first time she was put on a machine to help her breath and that was on for 4 hrs. She required some oxygen after that but was holding her own. After that they said everything would be fine and that some babies just take a little bit to learn how to suck. So not thinking anything was wrong we just kept trying thinking she will get it no problem.On the fifth day they said they were going to do a chromosome test but that they didn’t think anything would come back and that they were doing it just to cover all of their basis. Two days later we get the results. What a day that was. I was up at the NICU by myself like I was everyday sitting with her cause I never wanted to leave her. I saw the Doctor coming towards me just having this bad feeling in my gutt. He comes up to me and says “Annie we need to talk would you please come with us” So they take me into this little room. It was the doctor, a nurse and myself. They started explaining to me that she was missing part of her 5th chromosome and that the syndrome was called Cri Du Chat syndrome. I remember saying ” so what does that mean.” They handed me a stack of papers and said ” We don’t know that much about it and we have never seen a case but this is what we found on the internet” I said to them “Ok so you can’t tell me anything then” The Doctor and nurse reply with this ” Don’t expect her to do anything” She won’t ever know who you are nor will she ever play with toys, or walk, or eat.  I then burst into tears and ran out of the room calling my husband. And then when I collected myself I thought who are they to tell me about my little girl. She is mine I am going to do everything in my power to prove them wrong.

After we got the news and had some time to digest it we called our parents and our families came up. Everyone took it pretty hard. The nurses would continue to just make comments like ” See her eyes those aren’t “normal” see the creases in her hands “not normal” see those skin tags “not normal” and I finally said STOP talking about her like that this is my girl please go away.   When we finally got to take her home 25 days later I left my job and gave her my full attention. She started sitting up by herself at 6months old rolling over at 1yrs old.  Then she became very ill and we then went backwards in everything she had accomplished. So after that winter she needed to rebuild her strength back up. Bayleigh is a go getter though. When she wants to do something she will just do it. Just like any other kid. At the age of 2 she was crawling, pulling herself to her needs and just started walking around furniture.   She continued to do that for 3 more years. But again every winter she was hospitalized for at least a month at a time.  Alot of respiratory infections.  At the age of 5 she started taking 4 steps out of no where independently. We were all in shock! :) It was just an exciting time for her and we were all crying and so happy for her.  Then the fall of 2010 she had surgery to get her tonsils out. The scariest times in our lives. She became septic after that surgery 24hrs. later and her heart stopped they brought her back and then they said her organs where shutting down so she needed to get on heart and lung bypass. She was on that for 8 days. A machine 100% keeping her alive. It was a long 3 months in the hospital and alot of ups and downs but finally we got to come home!! The Doctors said their goodbyes to us and said “you have the strongest little girl we have ever met” She is the reason that makes us love what we do!! We all cried :)

Bayleigh now is 7 yrs old and just one of the happiest girls I know. She is now walking about 40 steps indepently and uses a walker for the rest of her walking. She is starting to eat food :) that is huge for her. She does still drink out of her bottle but we are getting there. She uses her IPAD to communicate and knows some sign language.  Bayleigh has a brother who is 2yrs old and a sister that is 5yrs old. She loves them so much and loves playing with them. They are both so good to here and really try to help take care of her.  We are one lucky family to have Bayleigh! We couldn’t imagine our life without her. She is a true blessing to us!!!

Updated 3/15/2012

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