Hi!

 

I got your E-mail regarding your daughter who will be using a C-pap machine.  My daughter who is now 22 months old was born 3 months prematurely and was on a C-pap machine for quite a while while in the hospital and after she had open heart surgery.  I do know a little bit about it, if you had any specific questions.  We fortunately have not had to have any facial surgeries to date.  I would love to correspond with you again regarding your child as I love to hear from others who share some of the same problems as we do.   My daughter's name is Mary Faith.   She was born with a heart defect, double outlet right venticle with a large VSD, she has had two surgeries to date for this as well as a heart catheterization.  She had to have a fundoplication done due to severe reflux which interferred with her breathing and had a Mic-key button placed at that time because it was also discovered that she aspirated on thin liquids, but was to weak to drink thickened liquids.  We have since had the Mic-key button removed she takes all food/drink by mouth.  She was born missing her right thumb and missing ribs on the right.  She also had to have a couple of skin tags removed.  She was born with a malformed right ear and has some facial paralysis on the right.  She is in the process of getting a hearing aid for her left ear and is undergoing tests this week to determine what is going on with her right ear.   We have had multiple problems with her lungs mainly from her being born 3 months prematurely.  My child is a miracle and I thank God for her and all her accomplishments. 

 

Nicole

mazenandnoura <mazenandnoura@...> wrote: