Posted by 98chevy on October 02, 2003 at 10:08:54:
In Reply to: oops that was to dana posted by 98chevy on October 02, 2003 at 09:59:26:
: : Hello again!!! Wow your son has been through alot too! but it seems like its all working out just great! My daughter Nidra is the one with brain damage and Jayda is the tube fed one. they both have there own problems and some times I feel like if it isnt one thing its another... Jayda doesnt have brain damage but she does have microsufly- (I know its spelled wrong) Her head doesnt look small compared to her body but it should be bigger, I mean to me and every one who looks at her they think she's looks just fine. But with the measurments of her head and her age it should be bigger, even though her bodys small. So that means if her head isnt rapidly growing neither is her brain- which can lead to problems later in life, but its a wait and see situation. Her doc. doesnt see a concern. And I just found this out the other day so its news to me. i'll tell you what sometimes things can get very overwhelming. And then sometimes its a very depressing situation just because I or nobody else will know there out come untill they get older. And there are people out there that have it alot worse and I just dont see how they have the strength to fly bye it all. Its like you learn something new every day about your child you never knew exsisted. And sometimes the little things the doctor tells you that could be a pobility with your child, are the things that really keep me going. they said that any child with brain damage or born under 30 weeks could risk the factor of cerebal palsey. Or diplasia -un able to walk easily, mental retardation. And the things I know I take for granit every day such as talking, walking and all that stuff I know might not even be able to reach my childs soul. So thats why I dont listen to the doctors and even the doctor in the nicu said I have my childs out come in my hands. Thats why they get pysical therapy everyday and occupational therapy every day, because I will prove the doctor wrong and many many mothers have. Even when they arent having physical therapy they constantly get there legs streached when we are playing, and etc. My husband says " when they grow up they will get to go sledding with the rest of the kids even if I have to wrap them up in bubble wrap. I never knew having children was typically so hard. And half of the doctors when they transported my kids to a different hospital, wouldnt even talk to me about my children they treated me as if .. I dunno. Maybe its because im so young? ( 19 ) But I dont think they realized that im the one paying there salary I have no assistance or anything to help me with my bills or my children just my husband. And I shouldnt of had to come to them they should have updated me the way they did other moms and dads. It was a horrible stay at the hospital when they got transported to a different one. they wouldnt even tell me Nidra had brain damage.. I found that out by a student working there and then I asked to see the ultrasound. But my husbands insurance does pay for most of the medicall bills I mean of course we have alot of out of pocket money paying for bills and physical therapy and occupational therapy. But they are here and money isnt a concern as long as they get what they need. I will be sure to look at that web page though. Sorry so long I got to typeing and couldnt stop...lol
Reflux is a big issue with Jayda.. Its hard to say when she was bottle fed i didnt like feeding her... I mean its horrible really horrible to say. But its something i wished not to do and of course I had to and I did it. But she has been home for about 2 and a half month and a totally of that Ive had to call 911 about 6-8 times because she has very bad reflux and choked on her vomit and stopped breathing and then her heart starts beating at a very slow beat the lowest Ive seen it was 13 beats a minute- (she has a monitor thats how I know ) And then Ive had to call 911 an additional 3 times for other reasons. But reflux... is a very very bad thing for Jayda. I dont think she knows what to do with her vomit once it comes up and so she freaks out and it gos in her nose and air hole and what not. And she always sit up about 2 hours after her feeding and its a good thing I was told to do so other wise she could have asperated.