Dear Mr. Sparks,
I was told at 19 weeks, something was wrong on the ultrasound, therefore, I was sent to an off base hospital for a level 2 ultrasound where it was diagnosed as a CDH. Devastation set in......we were advised to terminate...... unwilling to do that, I decided to carry her to full term and take the chance.....I had heard of the in utero surgery, but the doctors would not tell me where to go or how to get it done, I should have looked more into it....I went into natural labor just a little over 38 weeks, it was a short labor.....I was prepped for a C-Sec. just in case she went into any distress, she did not, but she did turn breech, so C-Sec. was only option.....she took one breath with a cry than they had to ventilator her....for 17 days, she was up and down, then when she was doing her best they decided to repair the hernia....she sailed right thru it. They tried to get her off the vent once she failed. She extubated herself once, she failed, then at about 3 months old she again sailed right thru an extubation...... she remained on oxygen. Soon she needed another procedure, we were transported to Children's Hosp...where she entered a Cath lab to close her PDA valve in her heart..they were trying to reduce her pulmonary hypertension......she sailed again right thru it, she did great, the procedure was a success. At that point we returned to University Hosp, where they watched her progress. Finally the end was coming in sight. At 4 months we got the best news ever, she was able to come home soon. That was Sept. 29th, she came home Oct 8,1999......her first doctor visit was that following Tuesday, she was doing great, got her 4 month shots and was doing fine.......the morning of Oct 16, 1999, she woke up fussy as usual at about 3 a.m. My mother was here for a visit, so she took her first shift......I got up with her at 6 am to relieve my Mom, my husband gave her her meds and we took her to the living room, she was still fussy, so we changed her nose cannula, and I just held her.......she started calming down so I laid her down on the couch in front of me she looked up took her last breath than passed.....we tried CPR, the ambulance came and rushed her to the hospital....a hour later she was pronounced gone....... we are still trying to recover, my son who is 4 still is very confused and doing what he can to make mommy feel better.....she is buried in Colorado where we are from, and has a great view of the Rockies, she is at peace and that is the most important thing.......She is missed yet we will see her again soon. That is her story.
Written by Kaylyn's mom, Kristen Stiner (Nebraska)
I was told at 19 weeks, something was wrong on the ultrasound, therefore, I was sent to an off base hospital for a level 2 ultrasound where it was diagnosed as a CDH. Devastation set in......we were advised to terminate...... unwilling to do that, I decided to carry her to full term and take the chance.....I had heard of the in utero surgery, but the doctors would not tell me where to go or how to get it done, I should have looked more into it....I went into natural labor just a little over 38 weeks, it was a short labor.....I was prepped for a C-Sec. just in case she went into any distress, she did not, but she did turn breech, so C-Sec. was only option.....she took one breath with a cry than they had to ventilator her....for 17 days, she was up and down, then when she was doing her best they decided to repair the hernia....she sailed right thru it. They tried to get her off the vent once she failed. She extubated herself once, she failed, then at about 3 months old she again sailed right thru an extubation...... she remained on oxygen. Soon she needed another procedure, we were transported to Children's Hosp...where she entered a Cath lab to close her PDA valve in her heart..they were trying to reduce her pulmonary hypertension......she sailed again right thru it, she did great, the procedure was a success. At that point we returned to University Hosp, where they watched her progress. Finally the end was coming in sight. At 4 months we got the best news ever, she was able to come home soon. That was Sept. 29th, she came home Oct 8,1999......her first doctor visit was that following Tuesday, she was doing great, got her 4 month shots and was doing fine.......the morning of Oct 16, 1999, she woke up fussy as usual at about 3 a.m. My mother was here for a visit, so she took her first shift......I got up with her at 6 am to relieve my Mom, my husband gave her her meds and we took her to the living room, she was still fussy, so we changed her nose cannula, and I just held her.......she started calming down so I laid her down on the couch in front of me she looked up took her last breath than passed.....we tried CPR, the ambulance came and rushed her to the hospital....a hour later she was pronounced gone....... we are still trying to recover, my son who is 4 still is very confused and doing what he can to make mommy feel better.....she is buried in Colorado where we are from, and has a great view of the Rockies, she is at peace and that is the most important thing.......She is missed yet we will see her again soon. That is her story.
Written by Kaylyn's mom, Kristen Stiner (Nebraska)
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