Neonatal Intensive Care Remembrance Day

9/26 was Neonatal Intensive Care Remembrance Day.  I didn't realize it until yesterday and immediately felt sad that I wasn't aware.  I didn't have any control over knowing or not knowing but I still felt bad for not knowing.  

What is this day?
Every year thousands of families must say goodbye to their baby in the NICU. On this special day we are honoring the lives of these little ones and the families that love them. 

In honor of this day, I want to talk about Jace.  I had to say goodbye to Jace in the NICU.  My worst nightmare had come true.  In all that we had gone through, more importantly: in all that the twins had gone through, never once did it cross my mind that one of my babies could or would die.  

Jace lost his fight after battling NEC on February 2, 2016. Necrotizing Enterocolitis is a disease that mostly effects premature infants.

Jace came out the healthier twin.  While Eliana had the battle of her life ahead of her that first week, He was doing okay for being born at 27 weeks and 3 days.  He was small (2lbs 11oz), yes, but he was doing great.  He thrived, only having to go on the ventilator one time for about 24 hours before February 1, 2016.  I was able to hold him for the first time on January 11 and it was pure joy, hope, and love. 

My first time holding Jace on January 11, 2016

A brief break from his CPAP

On January 31, Jace had to receive a blood transfusion (his first).  During this transfusion the nurses noticed his stomach became distended and he wasn't acting like himself. They immediately went NPO (nothing by mouth), put him on the ventilator, and started him on antibiotics. X-rays were taken every few hours to watch his intestines. At this point it was medical NEC. It was determined around 3 pm that day that his intestines had perforated and he needed immediate emergency surgery. Jace was placed in the best hands with pediatric surgeon, Dr. Lukish, from Johns Hopkins, and the surgery went great. He had to remove a smaller portion of his intestines and completed an ostomy, which would be reversed in about 4-6 weeks. We were told the next 24-48 hours were critical. Jace looked very sick before surgery and he looked very sick after. He was in the constant care of 2 nurses at all times as well as a doctor. The surgery would prove to be too much for his body to handle and on February 2 he started to have heart decelerations and CPR had to be performed as well as epinephrine. Jace continued to decline and the third time we were told his organs were shutting down. At this point, we took Jace off all machines and held him until he passed away in our arms. He took his final breath at 4:01am on February 2, 2016.


http://www.legacy.com/obituaries/baltimoresun/obituary.aspx?pid=177707697 

He was very much a boy with his square chest

The only day I missed with the twins in the NICU.  Our amazing nurse AND friend Alexis did a photo shoot and sent us pictures to make us feel like we were there.

Daddy snuggles

Perfect

BIG YAWN

Before surgery

We prayed

And held as tight as we could without scooping him up in our arms

Being led to the operating room by Nurse Julie

After surgery.  You can see Jace's ostomy in this picture (his intestine pulled through and in the bag)

  
Jace was amazing.  He looked exactly like his daddy, Brian.  Now that Eliana is older and bigger I see Jace in her so much (she also looks exactly like Brian now too). He had some red in his hair.  He had really long fingers and his chest was square.  He had deep eyes, they were blue, and when he looked at you it was as if he was looking into you, maybe sending you a message.  Maybe saying he was going to be okay.  He was truly beautiful.  He was a dream come true and I AM so lucky to be his mommy.

We held Jace's memorial in the Chapel at GBMC.  Officiated by Chaplain Lisa Fisher

I only got 23 days with Jace.  That is not enough time BUT I am so thankful I got time, I'm so thankful I was chosen to be his mommy.  I can only hope that amongst all of his tubes and wires all he felt was love from everyone.  I hope he knows how much he was wanted, how I had dreams and plans for him.  How I couldn't wait to bring him home to HIS house, HIS room.  I only hope he knows how much he was and IS loved.  I also hope he knows how much he taught me.  How much he taught so many people - he made a huge impact in so many lives and I know there isn't a day (a second) that goes by that I don't think of him AND many other people do also.  

Jace is home

Jace - mommy loves you more than words can ever say.  You ARE my baby blue and I can't wait until we meet again.  When that time comes I will never let you go.  Ever.