My Story

Melanie Sol Canete was born on August eight, 2001 at the North Collier Hospital (Naples, FL); she was a beautiful full term newborn with a healthy start, but ... a few hours later she fought a battle to live.
A bacterial infection had attacked Melanie's lungs leaving them collapsed and unable to draw in enough oxygen.
The doctors could do nothing to help her. Her only chance for survival was to receive ECMO therapy at Tampa General Hospital's Neonatal Intensive Care Unit (NICU). -Read front page-.
Five months later she had a big aspiration and admitted again into Pediatric Intensive Care Unit (PICU) at The Children's Hospital (Healthpark, Fort Myers).
Over a month later she left the hospital and went back home; her condition was still critical, her prognosis uncertain , but She was a survivor!
With oxygen 24 hours, connected eighteen hours a day to a pump to feed her by a Mic-Key button (gastronomy tube), and pulse oxymeter monitor, she continue receiving medicines for a severe reflux and undergoing nebulizations treatments several times a day.
She had to fight against asthma every day of her live, but the smile never disappear from her face.

A day on our lifes:

Let's begin at 1 pm...

1:00 PM we disconnected the feeding pump from the Mic-Key button; give her medicines and made the nebulizations treatments. Then we played a few minutes and then was bath time.
We were now ready for Melanie's therapies at home (occupational, physical or speech). After that, was time to try to eat by mouth, and then the most important time because we were ready to go out!!! ;

Short walks on the mall, at times where there is almost nobody there (Meli, can not be exposed to other kids to prevent viral contagious) , Melanie was really enjoying this afternoon trips.

At 7:00PM we had to go back home, as it was time for her medicines, nebulizations treatments and a change of clothes.
At 8:00PM we connected her to the feeding pump, for the next 16 to 18 hours Melanie could not move more than 4 feet from the feeding pump (and of course, that mean that neither could we).

Finally 12:30AM approximately she was sleeping.
1:00AM, was medicine's time, we checked the oxygen pipe... of course by now it was in her forehead ... so we put it back in her nose.
2:00AM the monitor started beeping... I checked and dismissed ... was false alarm, she was moving to much.
2:20AM the feeding started to beep... we were still awake; I ran to the pump, stopped the alarm, and looked what was happening, she was collapsing the milk line!. I put it her in the correct position and re-start the feeding; then I was going to sleep but...
..3:00AM Melanie was crying, she lost her pacifier! I was running again (usually we find it on the floor.) I washed it and a few minutes later she was sleeping quiet again.
3:45AM the monitor was beeping , her oxygen saturation was down. I stopped the alarm and checked the pipe ... that was in her forehead again... I tried to put in her nose but she was awake and fought with me; ten minutes later she was sleeping and calm.
4:15AM the monitor was beeping one more time, another false alarm
5:20AM the alarm clock was beeping. was time for Meli's dad to go to work.
6:10AM Melanie was vomiting, I was awake and help her to put the staff out of her mouth, then I went to stop the feeding pump, Cleaned Melanie's mouth and changed her clothes. Finally, 30 minutes later, she was sleeping again.
7:10AM I was still awake because I needed to re-start the milk.
7:30AM was medications time.
8:00AM she was awake, happy and was calling me "mama, mama". was not a nightmare, was real, was morning again and Melanie was ready to play. I changed her diaper, made the nebulizations treatments and to play.
9:30AM BARNIE's time on channel 3 !!!!!!!!!
10:00AM was time for Barnie's videotape.
12:00AM nap's time , half an hour.
1:00PM disconnected the feeding pump from the Mic-Key button... and all began again.

Her first birthday arrived and then the second ... and her prognosis to start walking was not good...
We exposed her to therapies with dolphins and she started walking... almost running, and she started to swallow very little pieces of food by mouth...

Life never was easy for her or us.
We took the decision to have another baby, We believed that will help Melanie a lot. And that was real...

Julie Nicole Canete born on May 6th, 2004 weighting 6 lb 14 oz and with 18 inches long. One hour after her delivery, we discovered she was born with a cleft palate complete and cleft uvula...
That complicated more our situation, because both girls required special care... but Julie brought us a lot of happiness , dreams and smiles...
Julie turned one and was a beautiful baby, but she was still eating with a special bottle every three hours .
Julie turned one and was a beautiful baby, but she was still eating with a special bottle every three hours.

On June 2005, Melanie was dying again ... She was in the ventilator for 7 weeks and turned four there, then slowly started to improve until the end of September when she was able to come back at home...
Just a couple of weeks later, we had to travel to Georgia, running away of a hurricane Wilma. On our way back we went to Joe DiMaggio's Hospital in Hollywood, Fl. were Julie, just 18 months old, had surgery.
For her condition Melanie can not go to lots of places (school, church, park, movie theater, etc) and at her 5 1/2 years old she started to miss having a "normal" life and that scare us a lot.

We were trying to understand what was happening with our girls for a very long time... finally in January 2007 , an Immunologist from All Children's Hospital in Saint Petersburg, and a Genetics Doctor from The Cranio-facial Team in Hollywood, gave us the answer: Our girls have Christ-Siemmens Syndrome ... that was the reason why when Melanie was born the bacteria in the hospital got her so sick and why now her lungs are in a such a bad condition. Likewise the syndrome is responsible for Julie's cleft. And for the lack of tears, saliva and sweat in both girls... .

We know, we have a long way ahead of us, but we are really proud of our beautiful babies, and dream a great future for them. Having two daughters with so many health problems is not easy emotionally, economically or physically but we learned to have faith in the future... we wish the stem cell can cure Melanie's lungs and for that reason we got rid of the very few things we had, and put our 2 bedrooms condo for sale.

Today we can just dream on a house, close to some important hospital that can help Melanie to continue with her treatments, and we are continually talking with doctors to find out which is the better place for us to live.

In October 28 2007, Angel Marie was born, she is the only hope Melanie has.
We keep the umbilical cord on a “Umbilical Cord Banking”, hope the stem cell studies can discover the cure for Melanie's lung issue.