Crazy and sad the day I had to say goodbye to Caitlyn Ember Adams

8:43 AM Rachel Adams 1 Comments

This is my Caitlyn. She was the strongest fighter that I know of and we sadly lost the battle with RSV on Feb. 6, 2012.

Caitlyn was born January 23, 2009 and was diagnosed 2 weeks later as Trisomy 18. As you can believe that hearing that and then being told your only little girl who was just born was going to die in 2 weeks to 2 months! What a way to approach things to parents....but that was just the start of the adventure that was going to take 3 years.

Caitlyn was then diagnosed with a VSD (a type of hole in the heart), a PDA ( where one part of the heart didn't close off), and an ASD (another type of hole in the heart). It was pain staking to get it fixed! I had argued with cardiologist, cardiac surgeons and more!

With hubby being Active Duty Army, the military base that we were at couldn't medically help our Caitlyn so we had to move and we moved to Virginia. I didn't see it then as I see it now but I think we were meant to be going there.

We made great friends with the doctors at Bethesda, not such a great time at Walter Reed, Awesome surgeon at Children's Hospital in DC. Caitlyn spent a good deal of time in and out of Children's Hospital. Dr. Richard Jonas who saw pass the Trismoy 18 diagnose and was glad to fix my Caitlyn's heart. 

September 30 of 2009 Caitlyn had undergone open heart surgery to repair the VSD and close off the PDA. By this time my little girl was 8 months old but the size of a new born. She made it through open heart surgery like a champ. In that time Dr. Jonas became my first contact in a long line of doctors to help other Trisomy 18 children.

Caitlyn began to gain weight and thrive (even though the medical community thought her to be incompatible with life). Caitlyn had ultrasounds done, cardiographs, echo-cardiographs, blood work, in and out of the hospital during our stay in Virginia. We met one other Trisomy 18 kiddo in Virginia. It was great there for a 1 year.

We got orders to Washington State and that is what led us to the end. We moved here in 2010 and Caitlyn had spent more time in the hospital here than when we lived in Kansas and Virgina combined. After thanksgiving of 2011 My Caitlyn had to have and emergency tracheotomy done Dec. 3rd of 2011 her SPo2 was in the 40%...not good! She was then life flighted to Children's in Seattle.

I then Meet Dr. Fallot who I found later is a LT. Col. in the Army at the same base hubby stationed to. Small world huh? He helped us get everything and anything we could ever want for Caitlyn medically. No fight, some tears and just love. Simply put just love; no chromosomal defects, no fighting, no screaming, no calling people to get things done....just simply put: Just love!

In this time after she was discharged with a trache, a g tube that eventually became a g/j tube, some tracheistis issues, some pneumonia stays, and then MRSA and lastly of all the things in the world RSV. Caitlyn had pulmonary hypertension because of her heart and well RSV and PH don't go hand in hand.

On February 6th 2012 after she had just turned 3 years old my Caitlyn took her last breath and became an angel. Daddy was deployed and didn't make it home in time to say good bye to our little warrior princess. I held her till her little heart stopped. On the day my heart dropped and has been missing my baby girl since.

1 comment:

  1. Dear Rachel
    I actually stumbled upon your video on youtube while looking for another video. I got really moved by it.. so much that I thought I have to see if you maybe were blogging!

    You look like you are doing such a good job, no doubt hard if you are doing most of it with husband deployed.

    I am sorry for your loss and at the same time happy that Caitlin was fortunate to have such an amazing family, surrounded by siblings and love.

    I hope you are able to find comfort in all the happy memories. Someone else wrote:

    "They say that time in heaven is compared to 'the blink of an eye' for us on this earth. Sometimes it helps me to think of my child running ahead of me through a beautiful field of wildflowers and butterflies; so happy and completely caught up in what she is doing that when she looks behind her, I'll already be there."

    Sending you lots of love and peace