Cayla Marie

Cayla's Story

  

"GOD LENT US ONE OF HIS ANGELS FOR FOUR MONTHS."
Cayla Marie was born @ 7:59pm at Robert Wood Johnson University Hospital in New Brunswick, New Jersey on Sept. 30, 2010. Being born at a mere 4.8 lbs. and 8 weeks premature.
Cayla was admitted to the NICU in Bristol Meyers Squibb Children’s Hospital where she spent the next two months of her life receiving her Neonatal care in preparation for her journey home with Mom & Dad. Cayla didn't have to do a darn thing and everyone was kept on their toes for the next few weeks. Test after test was administered and repeated for reasons we were very unclear about at the time, but we went with the flow figuring that if they were going to find something it might as well be now.
After a few weeks Cayla started to develop her personality. We always used to tell her that "Everybody Loves Cayla Marie" not realizing how so very true this was. In the two months she was in NICU, we as parents, saw first hand that babies received their treatment and care but somehow Cayla was able to capture their hearts.
Hypertrophic cardiomyopathy was one of her diagnosis, Cayla had a bit of thickening of the walls of the lower chambers of her heart. Nothing major that wasn't controllable by medication. Still many of the other tests and exams came back negative for everything they tested for. As time went on, Cayla needed less and less medical support.
On December 1, 2010 Cayla was transferred over to PSE&G Children’s Specialized Hospital so she could undergo various therapies which would help her to come home. Let me tell you, the doctors, nurses, and all of the staff at CSH are outstanding in each of their specialties. The quality of care given is second to none. To all who cared for Cayla, you are all angels with a special purpose. I won't mention names, they know who they are because we've already told them so.
On December 15, 2010 the hospital held a special Holiday celebration for all the children which included visits from Santa Clause and various other activities. To witness all the charitable donations as well as the personalized care left me in awe. I honestly didn't think that these kind of people actually existed anymore. Without hesitation I knew that I had to give something back as a token of my appreciation. I conferred with the members of my band, Kaotic Control and put together a last minute fundraiser held at Cafe 34 on Friday December 18, 2010. In just over 3 hours, we raised just under 600 dollars that was proudly presented to the hospital fund raising team.
While on the subject of music, Cayla absolutely LOVED music. Being a musician, I would have inevitably introduced Cayla to music, but a special thank you goes out to a very special nurse that actually introduced her to music therapy (you know who you are). Music is what molded Cayla into what she is. This point in time is when she really started to develop herself as a person with her own personality.
By the way, ironically enough, her absolute favorite song was "Part of Your World" from the little mermaid. Throughout her life, Cayla was a happy and complacent baby. Nothing really bothered her whatsoever. If Cayla cried, there was something definitely wrong, otherwise she would just hang out for hours without so much as a whimper. She was any parent's perfect baby. Cayla had the ability to keep herself amused for hours while being just a bit vocal every once in a while to let you know she was there.
Getting back to her medical issues. Cayla never really took too well to bottle feeding. She had what they call a reverse swallow which caused her more grief than I can tell you. After weeks of therapy, Cayla just flat out refused to have anything to do with a bottle. Of course the whole while she was being fed through an NG tube. She wasn't starving by any means. Our ultimate goal was to get Cayla in for a G-tube insertion which would make her feeding a whole lot safer than the nasal tube she currently had and then home with us after a couple of weeks. More on that later.
As if things weren't challenging enough, Around January 23, 2011 we received a call from cayla's geneticist. After about 3 months they finally had received the results from some genetics testing they had run back when she was still in NICU. Cayla had a very rare gene mutation called CFC syndrome (cardiofaciocutaneous) which explained every one of her abnormalities including the feeding issue. It's kind of difficult to explain what CFC is, so I would suggest that if you are interested, go to www.cfcsyndrome.org where this particular syndrome is explained in detail. The doctors were all proud of themselves because now they had a name to go with Cayla's issues. "Big deal" I told them. "So what" and we loved our baby girl that much more.
On February 1, 2011 Cayla was scheduled for her G-tube insertion. She said her goodbyes to those at Specialized to go on her 2 day hiatus in PICU. The plan was that after the surgery, 24 hours in the PICU for monitoring and return to CSH. Well, this is actually the beginning of the end for our baby girl. About 6 hours after the surgery (which went well BTW) her throat decided to close up as she was having difficulty breathing. She was intubated and put on a ventilator. To keep her calm, she was put on a paralytic and sedated amongst other cocktail meds. Four days later, while the doctors were contemplating weening her off the vent, she developed a lung infection which appeared to be viral because doses of antibiotics weren't doing anything. Through the course of 10 days she had her good days and bad days, ups and downs. The use of lasix and a couple of blood transfusions came into play. February 13th they had to change her central line because it developed a leak somehow. From the 13th through the 16th her condition seemed to get better so we were told. On February 17th 2011 at 2:10 pm I received a phone call at work. It was Cayla's PICU doctor telling me that Cayla wasn't having a very good day and strongly suggested that Sherri and I come up after work. With a gut feeling in play, I called Sherri to pick me up from work and we proceeded to go to the hospital. Cayla didn't look well from the moment we entered the room. After crying over her briefly, as we frequently did, we gave her some impromptu coaching to get better. We spoke to the doctor for a few moments who suggested that we hold her.
At 3:45pm Cayla passed away in my arms. As I always called her my little angel from the time she was still in the womb, Cayla Marie was truly my little angel now. What once was my greatest joy, was now my worst nightmare.
 

I'll tell everyone out there who has children... GO HOME..KISS YOUR KIDS...THEN GIVE THEM A HUGE HUG...TAKE NOTHING FOR GRANTED...AND CELEBRATE THE SMALL THINGS....FOR BIG ACHIEVEMENTS MAY NEVER COME!!
 

CAYLA MARIE WHITNEY TOUCHED THE LIVES OF MANY. SHE TAUGHT US THE MEANING OF UNCONDITIONAL LOVE PLUS OTHER THINGS I'M SURE WE WILL NOT KNOW UNTIL WE MEET HER AGAIN.
 

"BABY GIRL, MOMMY & DADDY LOVE YOU WITH ALL OF OUR HEARTS, FOREVER AND ALWAYS!!"
"YOU ARE MISSED SO MUCH WE CAN'T STAND IT."

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