Feel Free
If anyone is ever wondering anything please feel free to ask... if I have time I will always answer!! I am the kind of person who hates to sit and over indulge people if they don't care to hear- but if you ask I will talk for days!! And no subject is off limits!! (well maybe what is behind bluguy's sign... but I am sure you will hear about his big V if we convince him to get one- so maybe not even that!!! ROFL) Seriously- I lost all sense of modesty for myself with the first baby- and all sense of modesty for Kyleigh when they left her in the bed completely naked and hooked to tubes for 3 days!!!
KYLEIGH'S HEART:
Was thought to be a VSD- which is a hole in her heart. Every baby is born with a tiny hole and it closes up normally... but Kyleigh was not in the normal spot and was pretty BIG. They kept looking for Pulmonary Stenosis but it was never there... and they also thought that her arteries might not be connecting in the correct place...
Well... come to find out the reason why they were not seeing the artery connections is because she ACTUALLY has AV Canal with involved valves. The good news is that she actually HAS valves... they are just in need of some repair... some AV kids don't have valves at all... but the cardiologist is thinking that Kyleigh's heart will be repaired around 6 months of age. It will more than likely be open heart... so that makes me anxious.
Also.. she has what is called an Imperforate anus. Basically she has no Butt!! She could not pass stool because she had no opening to pass through... the surgery she went through on Saturday was the first of a series of three that will correct this problem. Right now she has a colostomy and will have that until the third surgery. I had this total vision of how asful this colostomy was going to be... and let me tell you... it is not even 1/5th as bad as I thought!! Actually if I get to choose between changing Ross's diaper or Kyleigh's colostomy - I definitely pick the colostomy!!!!!!!
They also are thinking that they will classify Kyleigh as having VATERs syndrome.
The good news here is that she does NOT have the majority of these symptoms... no kidneys abnormalities, no arm bone abnormalities, no esphogial problems, no tracheal problems, no limb problems (read extra digits, fingers, toes, etc.), and other that looking at the fat near her spine- no spinal abnormality or open spine- NO OPEN SPINE- thank god!!!
Just the two vessel cord at birth- the heart- and the imperforate anus. So... we are joining a network of parents in the Pull Through Network as recommended by our surgeon to be able to talk with others who also have children with our specific problem!
KYLEIGH'S HEART:
Was thought to be a VSD- which is a hole in her heart. Every baby is born with a tiny hole and it closes up normally... but Kyleigh was not in the normal spot and was pretty BIG. They kept looking for Pulmonary Stenosis but it was never there... and they also thought that her arteries might not be connecting in the correct place...
Well... come to find out the reason why they were not seeing the artery connections is because she ACTUALLY has AV Canal with involved valves. The good news is that she actually HAS valves... they are just in need of some repair... some AV kids don't have valves at all... but the cardiologist is thinking that Kyleigh's heart will be repaired around 6 months of age. It will more than likely be open heart... so that makes me anxious.
Also.. she has what is called an Imperforate anus. Basically she has no Butt!! She could not pass stool because she had no opening to pass through... the surgery she went through on Saturday was the first of a series of three that will correct this problem. Right now she has a colostomy and will have that until the third surgery. I had this total vision of how asful this colostomy was going to be... and let me tell you... it is not even 1/5th as bad as I thought!! Actually if I get to choose between changing Ross's diaper or Kyleigh's colostomy - I definitely pick the colostomy!!!!!!!
They also are thinking that they will classify Kyleigh as having VATERs syndrome.
The good news here is that she does NOT have the majority of these symptoms... no kidneys abnormalities, no arm bone abnormalities, no esphogial problems, no tracheal problems, no limb problems (read extra digits, fingers, toes, etc.), and other that looking at the fat near her spine- no spinal abnormality or open spine- NO OPEN SPINE- thank god!!!
Just the two vessel cord at birth- the heart- and the imperforate anus. So... we are joining a network of parents in the Pull Through Network as recommended by our surgeon to be able to talk with others who also have children with our specific problem!
0 Comments:
Post a Comment
<< Home