In Response to the Loss of Kayleigh

This is what my comment to Kayleigh's Parents are. Andrew Thought it was good enough to post here as it brought up several great points. This is what my thoughts were:


Prayers for your family.
Thank you for sharing your story with us all. As a mom who had 2 kids go through the nicu at cmc and one who nearly lost his fight for life(Jonathan) what you are doing a great thing by sharing.
Things like what you went through with Kayleigh could happen to any of us.
My Heart breaks with your family's and I pray for a bigger blessings to come. Please take care.
Another suggestion would be for people to pray for the families and the babies in the NICU. They are on a Very difficult ROAD, even on their babies best days. Pray for the Nurses who just took care of Kayleigh...Their heart's were invested also as the nurses treat these babies as their own. I know this because I still send pictures to the nurse who took care of my son in the NICU (more than 3 years ago).
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When I was in the NICU at CMC(Now Levine Children's Hospital) It was one of the most gut wrenching things to walk through the door. My child was not supposed to be there and this was not supposed to be something to happen to someone I cared and fought for through our infertility and a remarkable pregnancy. I had done everything right.
When we were told that Jonathan needed to be transferred to the HIGH hospital...at that point we were cheering as we felt there were competency issues. When we got to CMC we were given no sure promises of him doing anything and we were watching him moment by moment.
To me it was sure terror. Who likes seeing their baby have tubes and wires coming from everywhere. NOT ME. Who LOVES feeling like this was not my child due to the fact I could not touch him and other people were taking care of him. NOT ME.
No one likes to think in terms like what are we going to do if our child dies in the NICU.
These are all real things faced by lots of parents going through real life and death issues in hospitals and NICU's everywhere. There were a few families that had losses while we were in the NICU with Jonathan. The staff there really tried to minimize and make it a private issue but we KNEW about what other families were dealing with. In no lesser terms we knew THAT could BE us, and That was in the hands of our God.

We should be praying for the families of babies in the NICU... Both in the Levine Children's hospital in Charlotte,NC and also NICU's everywhere.

I have again told Jonathan how much of a hero he is to me and how he inspires me and a lot of people to fight for babies(both term and premature). I think we need to both see the miracles of the ordinary and the signs and Wonders and recognize that they are everywhere. Please do hug your kids. Every day is a gift and every mom who goes through the experience of the NICU knows this all to well.

Daniel was in the NICU under observation in the same NICU Kayleigh was. Although he was there for a mere 30 hours and kicked out because he was too good (Thank God).
Being a second timer and also a Wall of Hope family was a surreal and sad thing. Sad because people recognized us. Surreal because we never thought we would ever be back there. Once a year trip to the reunion is good enough for us. As Andrew said we never thought we would be riding the same horse again.

If we do consider trying for another child we DO have to consider this because of the fact this has happened twice to us and can now be proven.

Jonathan by all accounts by everyone at his school is the most loved kid in school... and we have been told that by their observations that he is well loved.
He should be and deserves that as every child should. It breaks my heart.

Be blessed and Please release a balloon or light a candle in her honor on Sunday at 4 pm (EDT).
Trina