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  • Britta de Leyer
    Hi Jenna, Kristen was born at 30 weeks. At first we thought she was delayed because of being a preemie. She left the hospital after 5 weeks and was healthy.
    Message 1 of 1 , Feb 1, 2005
      Hi Jenna,
      Kristen was born at 30 weeks. At first we thought she was delayed because of being a preemie. She left the hospital after 5 weeks and was healthy. I was nursing her. The reflux started one week after discharge and the crying started the same time. About a month later we noted she was not gaining alot of weight, but I was determined to nurse her. At around 4 months my family told me that they thought she was not tracking as she should have at her age. At that time, she was screaming her head off and crying all the time. Finally a nice old pediatrician saw her and took one look at her and said she needed to be admitted. He told me she had brain problems. The first day of her hospitalization, we saw a pediatric opthmologist and he diagnosed her with CVI. The next week, they told me she needed a g-tube because she was losing weight. She would only nurse for 5 minutes at a time and then continue crying and vomiting. They did a CT scan and said she had brain damage. later an MRI was done and it showed extensive brain damage. At first that bothered me a lot and made me think she did not have much of a future, however, it really doesn't mean anything as Kristen has become the most pleasant, social, happy, young girl. This however took 18 months to get to that spot.
      Anyways, they then discovered she was having infantile spasms and when they put her on the meds for that, her screaming stopped. She outgrew the spasms however has two other types of myoclonic seizures that are well controlled with Phenobarb and Clonazepam.
      Kristen has never eaten by mouth since her g-tube. She aspirates. We do however give her tastes. She is generally healthy however we do need to watch for any respiratory problems and get her on meds quickly if that comes up. The g-tube surgery was not a big deal in the sceme of things, however it is surgery. I wish we had done the fundo much earlier as the reflux was obviously the thing that was bothering her alot. I was a bit nervous about that surgery, but apparently her surgeon had done alot of them, so I felt a bit better. It certainly was painful for her, but the outcome certainly outweighed anything the surgery did for her.
      Kristen just had osteotomies on both of her hips (Jan. 21)and this surgery is the worst so far. She is still in hospital and is a trooper.

      What I found the most difficult for me was how this was all affecting me. I had very little help initially as we lived away from family and I really did not realize all the difficulties she had at first. I was exhausted and cried alot. And I have to say, it took me two years to finally accept all what has happened and be okay with it. I have a wonderful, beautiful daughter. My son is 9 years old and he adores his sister and treats her as such. She loves being manhandled by him. He certainly has his difficult times with her and asked me just before this hip surgery if she was going to die. But he is also a very caring young boy as a result of having his sister around.

      Anyways I am going on too long. I can certainly e-mail you privately, that might with specific questions.


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