This is our story.....

Hello, and thanks for stopping by!

As I went into labor,I had my two close friends by my side.Others like my best friend in Denver was there in spirit. We didn't know there would be any issues, as I had been seeing a specialist because my OB Dr. thought a brain ventricle looked enlarged, as well as a kidney, they NEVER suspected anything such as trisomy.

The date was 10/23/09 Kaylee was 10 days early! My husband ,who is in the US Navy drove 10 hours to get to the hospital I was dialated to a 9 1/2 and the dr decided since I was supposed to be a repeat c section,and Kaylee was tail up,a c section would be done. Upon her being born, I was told she was being checked out. The local hospital has no idea what was wrong with her, so the called Vanderbilt Childrens to come get here ASAP. All I was told was she had alot of major issues.

My friend Jarrah volunteered to ride down to the hospital and sit with baby Kaylee since it would be hours untill Josh made it and we didn't want her there alone. I was in recover from c-section and couldnt be released for 48-72 hours

Once my husband made the drive from Va.to Tennessee,I was stuck 2 hours away,and he was told they were doing genetics testing on her...once it came back we found she had Mosiac Trisomy 9, cranial steno.,a kidney mutation,as well as cleft palete (inside her mouth,not affecting her lip) we were told they aren't sure about if doing surgery on her cranio will or will not help her "quality of life", but they are planning on doing her nose surgery between 3-6 months,the dr says they push her brain back UP into her skull,(because of her skull fusing early the brain tissue had no where else to go but into her nose)and take a piece from her rib and put into her nose bridge(sounds like alot for a small baby to me)

She also failed the ear test and they THINK she could be blind from pressure on her brain??? According to the results it says it is in 25%-53% of her cells(what ever that amounts to) She has cleft inside her mouth only, ASD,Cranio.,and also because of the cranio. has brain tissue behind her nose...she had g tube inserted in her also during her 18 day stay at Vanderbilt.

The Vanderbilt childrens hospital did a suck/swallow on her and said she was not aspirating, but then at hospital she started refluxing BAD, but only did it twice in the time she was there, they put her on pepcid, which is not seeming to help...the doctors there were saying they expect her to succumb to her "illness' and getting phemonia in her lungs and 'expiring" as they put it SO NICELY..(YA RIGHT) They want to take away hope,and I feel they are very wrong for this but they also haven't delt with a T9 child before ,so...

We were sent home in good hope and happy spirits that our baby girl was home. Once home, I was networking like crazy with alot of trisomy 9 families (whom I still have contact with thru facebook)It was great for advice,especially 9 tips,on Yahoo!Groups!We also found out later she PASSES her hearing,but may need tubes,that was fine, at least she was not deaf

That is how every decent test result we had,we always looked,that it COULD be worse,others had it worse off than us etc..

Kaylee got up to 6lb 12 oz,and all of a sudden her weight started dropping like crazy and her reflux became worse and worse, upon seeing her GI DR. He almost admitted her, but at her very last dr visit, on 2/1/10 she gained 4 oz back in just 4 days!WOW we were so excited as we had started giving her cereal through her g tube and it helped the reflux by keeping the formula down!We were relieved!She seem so much happier and healthier,so we thought!

I never will forget that tragic day, February 3, 2010 about 10:30am, my husband was going to run to the store ,and since we didnt like getting Kaylee out alot,because of all the germs, myself,Kaylee and Peyton(our 2 year old) stayed at home. Kaylee has just ate and seemed happy as could be! We had just got a new fridge that was on its way, so I ran and grabbed everything out of our freezer, and decided to give Kaylee a bath. As I went to get her, I told her we were taking a bath ,she always slept in her bassinet,right beside us, but for whatever reason I took my eyes off her for just a couple of minutes.I reached in to get her and she had a blank look and was white as a sheep,she wasn't blinking breathing etc. I started CPR and called my husband screaming to come home, I called 911 who took forever (come to find out our town only have TWO,YES TWO AMBULANCES RUNNING)My husband made the 10 min drive in 2 mins, 911 took over 20 mins! The 911 operator kept asking me questions, is her chest rising,is she pink,etc etc. I just wanted her to stop questioning me and let me do the cpr! One my husband got home he started the cpr. FINALLY 911 made it to our home,the paramedic who ran in also look startled and disturbed,I am sure the 911 dispatch knew she wasn't alive, as her chest wasn't rising. On the drive there,my husband is like,"she is gone",I was in denial and convinced she was NOT and she would be like those people you see on tv who magically start breathing again.

As we set in the hospital, the dr.on call walked in,just shaking his head. The days thereafter were nothing but a blur for me, as it seemed and still seems so surreal. As before,I always try to think maybe someone had it worse,they never got to meet their baby,or lost it minuets after birth or etc.. Now we just try to go through everyday by focusing on other things, our 2 year old son,Peyton, or Kaylee's happy memories, not losing her, but thinking about when she was here. I like to think she still is...