Friday, February 3, 2012

Tiny's Story

Our son (to be adopted in 2012) was born on June 20th in a Northern Calif city. He is the biological sibling of our now youngest 2 kids. He was born in a shed in an attempt to be hidden. After 8 days of life he was discovered by the sheriff's office and CPS and was taken immediately to the hospital....thats when we got the call... The following morning they discovered through a "chance" echo that he was a Hypoplastic Left Heart Syndrome baby... We were then told there was nothing they could do and that our boy would die.  UCDMC told us otherwise!  (what a miracle that he lived this long!!!)
He was transferred immediately via air and had surgery on June 30, 2011.
After 2 months of emotional ups and downs we were discharged home on the home health program.
Our baby thrived and became quite the joy in our home. As most heart parents know during these first few months of life we have to shelter them from as many outside germs as possible, so we spent the bulk of our time at home.  My wife and I rarely (if ever) went out alone for the next 6 months.
We had a number of hospitalizations between Sept and December for illnesses, colds, etc but overall "Tiny" continued to gain weight and thrive.  He had a smile and eyes that melted everyone. He truly was beautiful.

The days leading up to Thanksgiving it became quite clear that we were approaching the need for the Glenn surgery... His SAT's would drop to 50% without any crying or fussing. We stayed home until the day after Thanksgiving and finally had to take him back to the hospital. His sat's would continue to drop during the next week - as low as 40%, again without any crying, etc... In fact he was happy and comfy up until the morning of his surgery.

Friday, Dec 2nd Tiny had his Glenn. The staff let us carry him down to the OR and we quite literally handed him off to the OR staff. Through tears we kissed our baby and then had the agonizing wait ahead...

He did well in surgery as far as his heart was concerned but blew up to nearly twice his size for unknown reasons.

December brough many ups and downs emotionally. Days we thought he would survive. Days we were certain he would die.

Tiny remained on bypass and ECLS (ECMO) for the next 25 days. 
On or around December 23rd we had to work with the hospital to make some agonizing decisions.

On Dec 27th my son was removed from life support at about 2:30 in the afternoon and passed quite quickly.

God has opened some amazing doors for us through this. We have met some amazing people, made some wonderful new friends and really, have grown to love our "heart family,"

I have to name a few people that we love - first, our surgeons and their ENTIRE team at UCD (Gary Raff, Ming Si, Mark Parrish, Celia Buckley and Barb Goebell and the PICU family), our new friends (Katie Beers, Melissa Murphy, Stevie Long, Andrea Himmelberger,). Special "shout outs" to Mended Hearts Shannon Tucker and again the entire team at UCD.
We could quite literally not have done this without our faith in Christ and the support of our friends.

The outcome is far from what we wanted (or want), but knowing that our Tiny Warrior doesn't have to suffer any more gives us comfort.  God gave us 6 months and one week with our boy - but our lives are forever changed.

Id love your support in helping at our blood drive on Feb 19 and also in raising funds for UCDavis PICU (were trying to get Tiny's name memorialized on the walls there and help other fam's)... You can learn more on face book - just search "tinySmiles."

I pray every day for my heart family - those I know and those I read about.  You are all loved. Please, lets use the opportunity we have this month to raise some positive awareness for CHD's and the battles we, and our kids, face every day.

1 comment:

  1. Beautifully written Rick. Thank you for sharing Alexia.
    Heart Hugs to both of you.