Isn't that just amazing? Kayleigh is now weighing just over 11 pounds. Can you believe that??? It is wild to think that she is 11 times her birth weight.
I know there are a lot of questions coming in and with all the posts that have been submitted in the past 10+ months, I am sure it will be hard to go back and get an clear understanding of everything that is going on. The summary above on the title helps clear her journey up, but I would like to break it down a little more. So, for those who are just joining us or those who have gotten dizzy on our ravaging roller coaster and and need a quick refresher on what is going on with Kayleigh, here we go:
Kayleigh was born 6/23/08 weighing 1 pound - 1 ounce (470 grams to be exact). She was 10.5 inches long. If you get a ruler and try to get an understanding of how small this miracle was, you will literally
Just to sum up Kayleigh's 10 month roller coaster ride quickly for you:
ROP Stage 3 - Eye Surgery
Gastrointestinal Surgery - Bowels
VSD Repair Surgery - Open Heart
Tracheostomy Surgery - Airways
G-tube Surgery - Feeding Tube
Nissen Surgery - Stomach
Bilateral Hernia Repair Surgery - Groin
10+ Blood Transfusions
Skin Biopsy - Chromosomal Studies
Rectal Biopsy - Hirschsprungs Disease
Intestinal Biopsy - motility
Heart Catherization - Pulmonary pressures
(3) Central Line placements
Pepcin Test - aspirations
Impedence Study - reflux
(2) Upper Gastrointestinal Studies - motility
(2) Lower Gastrointestinal Studies - motility
15+ PCVC Line Placements - long term IV's
10+ Blood Culture Tests - for infections
200+ Blood Gas Tests - Pin pricks to her toes (and I'm probably well below my guesstimate)
I am sure I am missing many other things.
So, now that you have seen what she has been through in a short period, it kills me to say that after this final surgery, she was supposed to be coming home. Coming home perfect that is. But, something happened in this final surgery which caused Kayleigh to not get enough blood and/or oxygen to her brain causing her Cerebral Cortex to be damaged and considered flat, no waves, not working, or no activity.
Kayleigh's brain stem still functions, allowing her heart to work, breath and have reactive movements (nothing purposeful). After many many hours of praying, her injured brain is now deteriorating and can not repair itself without a miracle. We went from riding up and down on this NICU roller coaster, to becoming the wheels, going round and round with our emotions in a complete whirlwind.
We now have goals to bring Kayleigh home to live out her remainder time right where we prayed she would make it from the beginning. The great news is, we are close to that prayer being answered, but Kayleigh will mind be enjoying that moment in another place. The rest of her body may be working fine here, but we believe her mind is working perfectly up there in Heaven.
From day one when the doctors didn't believe Kayleigh would survive the pregnancy, our prayer warriors have been behind us and miracles occurred. When Kayleigh went through every devastating and intense surgery, our prayer warriors were still behind us and Kayleigh pulled through the unthinkable. Right now, our prayer warriors are praying for another miracle from God, and we will never give up until God decides to show us His plan. If that plan brings Kayleigh home to the Lord and to a much better place, our prayer warriors will rejoice in one amazing journey for one beautiful little girl.
Kayleigh is our one pound blessing from God and she is nothing short of His beauty, strength and love. We are all better people for have knowing Kayleigh and we will be sure to share her story forever so others can be touched so deeply like all of us.
"God, Thank you for blessing us with Kayleigh and ALL of our old, new and future friends here through Kayleigh's journey. May we continue to find faith, hope and love through your works. We may not see your reasons sometimes, but we trust you with all of our hearts. We thank you for holding our hands through all of this and allowing us to use/sacrifice things in our lives to help others. We pray that everyone reading this will see that You (God) will not give us anything that we can't handle and no matter what other trials and tribulations people may be going through, we pray they will trust in your reasons and find peace in knowing your love is so amazing!!!"