Hello everybody! We like to share with you our story... Everything start whe
n we were expecting our first little angel ... . We were born in Argentina and moved to Naples, Fl in December 1997. On August eight, 2001 finally Melanie Sol Canete borned at North Collier Hospital; was a beautiful fullterm 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 unab
le 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 C
are Unit (NICU). Similar to a heart-lung machine, ECMO, or extra-corporeal membrane oxygenation works by drawing a baby's blood into an artificial lung machine, where it is cleansed of waste products and enriched with oxygen. This allows the child's ailing lungs to rest and heal. Melanie received E
CMO treatment for 14 days before she was removed from the machine. Still very sick, however, she spent most of the next three months in Tampa General's Neonatal and Pediatric Intensive Care Units, where she was monitored and treated for severe lung disease (pneumonia, pulmonary hipertension, blood infection, RSV, ... ). Melanie Sol was well enough to go home to Naples in November.
Five months later she had a big aspiration and she fell back into Pediatric Intensive Care Unit (PICU) at The Children's Hospital (Healthpark, Fort Myers). More than a month later she returned at home again. Her condition was critical, her prognosis was uncertain , but She was a survival ! With oxygen 24 hours , connected eighteen hours a day to a pump to feed her by a Mic-Key buttom (gastrostomy tube), a pulse oxymeter monitor, continue using medicines for a severe reflux and nebulizations treatments several times a day, fighting her asthma, brain damage, ... She never loose her sm
ile, She was a very happy baby!One regular day I wrote what happened ... ( without medical appointments)
24 Hours in our lifes... We began our day at 1 pm, disconnected the feeding pump from the Mic-Key button; use it for her medicines and made the nebulizations treatments. Then we played a few minutes and was her bathetime. Then we were ready for Melanie's therapies at home (ocupational, phisical or speech). After that was time to try to eat by mouth, and then wa the most important time because we were ready to go out!!! ; Walking at the shopping mall or at Fifth Avenue , Melanie was enjoying the afternoon. At 7:00 pm we needed to came back at our bedroom, was time for her medicines and nebulizations treatments, change her clothes ... . At 8 pm we connected the feeding pump (that's mean Melanie could not move more than 1 1/2 meters from the feeding pump for the next 16 to 18 hours) and of course, that's mean I could not move too. Finally 12:30 am approximaly she was sleeping. 1 am, was medicin
e's time, and check the oxygen canula... was in her forehead..., put again in her nose. 2 am, the monitor was beeping... I checked, put the alarm off, ... was false alarm, she was moving to much. 2:20 am, the feeding pump was beeping... we were awake; I ran to the pump and stoped the alarm, then I looked what was happening, she was collapsing the milk line!. I put it in the correct posittion and re-start the feeding;then I was going to sleep but... 3 am, She was crying, she losted her pacifier! I was running again (usually we find it on the floor.) I wash it and a few minutes later she was sleeping quiet again. 3:45 am, the monitor was beeping , her oxygen saturation was down. I stoped the alarm and checked... the canula 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. 4:15 am, the monitor was beeping, I was awake and put the alarm off; she put the sensor out of her toe, ...Icould not remember where put the tape...I looked for until finally I found it at the computer's desk. I made the connection again , and went to sleep. 5:20 am, the alarm clock was beeping. Jorge was awake to go to his job. 6:10 am, 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 after 30 minutes she was sleeping. 7:10 am, I was still awake because I needed to re-start the milk. 7:30 am, was medications time (two were in the bedroom and two in the refrigerator.). 8 am, She was awake , happy and was calling me:"mama, m
ama". was not a nightmare, was real, was morning again and Melanie was ready to play. I changed her diaper, made the nebulizations treatments and played again. 9:30 am, BARNIE's time on channel 3 !!!!!!!!! 10 am, was time for Barnie's videotape. 12 am, Nap's time , half an hour. 1 pm, disconnected the feeding pump from the Mic-Key button... and all began again.
Happy first birthday little angel!
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...The 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 borned on May 6th, 2004 weithing 6 lb 14 oz and 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 princesess required special care... but Julie bring us lots 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 .
Melanie was dying again on june 2005... She was in th
e ventilator for 7 weeks and turned four there, then slowly start her recuperation until the end of September when she was able to come b
ack at home... and just a couple of weeks later we needed to went to Georgia because of the hurricane storm... coming back we went to Joe DiMaggio's Hospital in Hollywood, Fl. were Julie finally had the surgery 
at 18 months old.
For her condition Mely can not go to lots of places ( school,
church, park, movie theater, etc) and at her 5 1/2 years old she start missing to have a "normal" life and that scare us a lot.
The lungs stop growing between 6 to 8 years old. We have not to much time to help her improve her condition naturally.
We were trying to understand what was happening with our little angels for a very long time... finally in January 2007 , an Inmunologist from All Children;s Hospital in Saint Petersburg, and a Genetist Doctor from The Craneofacial Team in Hollywood, resolved the mystery. Our angels have Christ-Siemmens Syndrome... that was the reason when Melanie was born and got the bacteria in the hospital was very sick inmediately, and now her lungs are in a pretty 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 to follow, but we are really proud of our beautiful and special babies, and spect a great future for them. Is really hard to have a very sick babies, emotionally, economically and phisically but we learned to have faith in the future... we wish the stem cell can cure Melanie's lungs and for that reason we put our condo on sale. We want to pay all our debts , move to rent a house in Durham , North Carolina, close to a Hospital with better facilities for their condition and make the in vitro fertilization praying to have our last baby and a blood cord to save her life...
n we were expecting our first little angel ... . We were born in Argentina and moved to Naples, Fl in December 1997. On August eight, 2001 finally Melanie Sol Canete borned at North Collier Hospital; was a beautiful fullterm 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 unab
le 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 C
are Unit (NICU). Similar to a heart-lung machine, ECMO, or extra-corporeal membrane oxygenation works by drawing a baby's blood into an artificial lung machine, where it is cleansed of waste products and enriched with oxygen. This allows the child's ailing lungs to rest and heal. Melanie received E
CMO treatment for 14 days before she was removed from the machine. Still very sick, however, she spent most of the next three months in Tampa General's Neonatal and Pediatric Intensive Care Units, where she was monitored and treated for severe lung disease (pneumonia, pulmonary hipertension, blood infection, RSV, ... ). Melanie Sol was well enough to go home to Naples in November.Five months later she had a big aspiration and she fell back into Pediatric Intensive Care Unit (PICU) at The Children's Hospital (Healthpark, Fort Myers). More than a month later she returned at home again. Her condition was critical, her prognosis was uncertain , but She was a survival ! With oxygen 24 hours , connected eighteen hours a day to a pump to feed her by a Mic-Key buttom (gastrostomy tube), a pulse oxymeter monitor, continue using medicines for a severe reflux and nebulizations treatments several times a day, fighting her asthma, brain damage, ... She never loose her sm
ile, She was a very happy baby!One regular day I wrote what happened ... ( without medical appointments)24 Hours in our lifes... We began our day at 1 pm, disconnected the feeding pump from the Mic-Key button; use it for her medicines and made the nebulizations treatments. Then we played a few minutes and was her bathetime. Then we were ready for Melanie's therapies at home (ocupational, phisical or speech). After that was time to try to eat by mouth, and then wa the most important time because we were ready to go out!!! ; Walking at the shopping mall or at Fifth Avenue , Melanie was enjoying the afternoon. At 7:00 pm we needed to came back at our bedroom, was time for her medicines and nebulizations treatments, change her clothes ... . At 8 pm we connected the feeding pump (that's mean Melanie could not move more than 1 1/2 meters from the feeding pump for the next 16 to 18 hours) and of course, that's mean I could not move too. Finally 12:30 am approximaly she was sleeping. 1 am, was medicin
e's time, and check the oxygen canula... was in her forehead..., put again in her nose. 2 am, the monitor was beeping... I checked, put the alarm off, ... was false alarm, she was moving to much. 2:20 am, the feeding pump was beeping... we were awake; I ran to the pump and stoped the alarm, then I looked what was happening, she was collapsing the milk line!. I put it in the correct posittion and re-start the feeding;then I was going to sleep but... 3 am, She was crying, she losted her pacifier! I was running again (usually we find it on the floor.) I wash it and a few minutes later she was sleeping quiet again. 3:45 am, the monitor was beeping , her oxygen saturation was down. I stoped the alarm and checked... the canula 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. 4:15 am, the monitor was beeping, I was awake and put the alarm off; she put the sensor out of her toe, ...Icould not remember where put the tape...I looked for until finally I found it at the computer's desk. I made the connection again , and went to sleep. 5:20 am, the alarm clock was beeping. Jorge was awake to go to his job. 6:10 am, 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 after 30 minutes she was sleeping. 7:10 am, I was still awake because I needed to re-start the milk. 7:30 am, was medications time (two were in the bedroom and two in the refrigerator.). 8 am, She was awake , happy and was calling me:"mama, m
ama". was not a nightmare, was real, was morning again and Melanie was ready to play. I changed her diaper, made the nebulizations treatments and played again. 9:30 am, BARNIE's time on channel 3 !!!!!!!!! 10 am, was time for Barnie's videotape. 12 am, Nap's time , half an hour. 1 pm, disconnected the feeding pump from the Mic-Key button... and all began again. Happy first birthday little angel!
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...The 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 borned on May 6th, 2004 weithing 6 lb 14 oz and 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 princesess required special care... but Julie bring us lots 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 .
Melanie was dying again on june 2005... She was in th
e ventilator for 7 weeks and turned four there, then slowly start her recuperation until the end of September when she was able to come b
ack at home... and just a couple of weeks later we needed to went to Georgia because of the hurricane storm... coming back we went to Joe DiMaggio's Hospital in Hollywood, Fl. were Julie finally had the surgery 
at 18 months old.For her condition Mely can not go to lots of places ( school,
church, park, movie theater, etc) and at her 5 1/2 years old she start missing to have a "normal" life and that scare us a lot.The lungs stop growing between 6 to 8 years old. We have not to much time to help her improve her condition naturally.
We were trying to understand what was happening with our little angels for a very long time... finally in January 2007 , an Inmunologist from All Children;s Hospital in Saint Petersburg, and a Genetist Doctor from The Craneofacial Team in Hollywood, resolved the mystery. Our angels have Christ-Siemmens Syndrome... that was the reason when Melanie was born and got the bacteria in the hospital was very sick inmediately, and now her lungs are in a pretty 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 to follow, but we are really proud of our beautiful and special babies, and spect a great future for them. Is really hard to have a very sick babies, emotionally, economically and phisically but we learned to have faith in the future... we wish the stem cell can cure Melanie's lungs and for that reason we put our condo on sale. We want to pay all our debts , move to rent a house in Durham , North Carolina, close to a Hospital with better facilities for their condition and make the in vitro fertilization praying to have our last baby and a blood cord to save her life...
