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This fundraiser ended on 11/30/12

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Family and Friends of Maiya Elizabeth Colón are uniting to raise money to help with her medical bills. Please show your support!

A Miracle named Maiya

Maiya Elizabeth Colón entered the world on Friday, August 31, 2012, at 4:26 pm, exactly seven weeks premature. She is the daughter of Wilfredo and Maria Colón.

Born at 33 weeks gestational age, Maiya weighed 2 lbs 13 ounces and was 15 1/8 inches long. Diagnosed while still inutero with A-Symmetrical Intrauterine Growth Restriction (IUGR), her size at birth more closely resembled that of a baby born at 28 weeks of gestational age. Due to a lack of amniotic fluid, Maiya was unable to grow all of her body “normally.” However, smart girl that she is, she focused her energies on developing her heart, brain, and lungs.

Admitted to the Neonatal Intensive Care Unit at Golisano Children’s Hospital for respiratory distress, Maiya was placed on the “gain and grow” track--a good track to be on in the NICU. Her first few days of life were perfect; she had limited respiratory support and within three days no longer needed her nasal cannula. Maiya even began eating via a feeding tube. (She was still too small to suck without tiring herself completely out.)

On Thursday, September 6, 2012, Maiya encountered her first bump in the road. An amazing nurse named Jess noticed that the little peanut “wasn’t acting quite like herself” and consulted with the attending neonatologist, Dr. Pryhuber. Upon examination, it was found that Maiya had some minor abdominal distention, and X-rays were ordered. The first completed X-ray showed no abnormalities, but the second, taken 45 minutes later showed tiny air “bubbles”, a sign of abdominal distress, and potentially Necrotizing Enterocolitis, also known as NEC.

Maiya was rushed into surgery that morning where it was discovered that she had a perforated bowel, accompanied by NEC. Dr. Walter Pegoli removed a small amount of dead tissue at the ileocecal valve, disconnecting the small and large intestine. Cultures were taken in order to determine if any potential bacteria was present outside the intestine. A stoma was created to allow her tiny body time to heal.

After the surgery Maiya was closely monitored and seemed to be doing well. She was a little swollen, particularly in the abdomen. Even with the slight swelling she looked great! The only small concern was a tiny red spot on her abdomen near the incision. Slowly, over the next 24 hours, the tiny red spot spread across her abdomen and began creeping up her chest and neck. She had developed sepsis, a life threatening blood infection, which spread rapidly throughout her body. She was immediately started on IV antibiotics to combat the infection. Despite the antibiotics Maiya’s health continued to deteriorate. By Saturday morning her tiny body was so swollen she was unable to open her eyes, and her skin gleamed an angry red color from her abdomen up to her neck.

She began having increased trouble breathing and regulating her blood pressure and heart rate. Maiya required a Ventilator and was given blood and platelet transfusions, six total, over the next 24 hours in an attempt to help her fight off the mystery infection. Her cultures never grew anything. Antibiotics were changed and doses increased but nothing seemed to help. Doctors checked blood gases every two hours but saw no improvement in white or red cell counts. Early Sunday morning, after another disappointing blood gas report, doctors began preparing her parents for the next step. Intubation was not longer providing Maiya with enough oxygen, and it looked as if she was going to need to be placed on an Oscillator, a machine that keeps the lungs open by vibrating the oxygen (and the baby) at a very high pace, forcing the oxygen in. This was not a step in the right direction. Maiya was losing her fight with NEC.

Upon receiving this news, Maiya’s mom and dad called their families and the hospital’s on-call priest. If their angel baby was going to be called home, then she would do so free of sin. On Sunday, September 9, 2012, nine days after her birth, three days after her surgery, Maiya Elizabeth Colón became a member of the Catholic Church. Maiya’s parents dressed her in a beautiful white dress and hat, held her tiny hands, professed their intentions, and had her baptized.

Not long after her baptism, minutes actually, Maiya’s neonatologist decided to add another medication, an antifungal, in a last ditch effort to save baby Maiya. Two hours later with the results of the next blood gas report, the one that would determine if Maiya needed an oscillator, there was a glimmer of hope. Her rates had shown the slightest improvement. Maiya was fighting back!

As quickly as the infection came, it went. With the addition of the antifungal and another, stronger antibiotic Maiya began to improve (she would remain on these medicines for 21 days). The redness receded down her abdomen and was gone. Swelling decreased, and her breathing stabilized. Five days after her surgery, Maiya finally reopened her eyes.

I wish I could say that this was the last bump in the road for Maiya, but less than two weeks after the first surgery Maiya was taken into surgery a second time to repair the original incision. She had managed to pull her sutures out, allowing her abdominal contents to start peaking out of the wound on her stomach. Minor in comparison to the first surgery, Maiya recovered quickly--yet remained unable to eat for another 16 days. She continued to receive her nutrition via the central line or PIC line in her leg.

In the weeks following her surgeries Maiya has started to eat again and grow. She is up 50 percent from her birth weight, and is growing stronger every day. She is able to pick up her own head, tracks her mobile, and recognizes her parents voices. She is still working on eating, and hopefully will begin to take food by mouth in the next few weeks. Maiya still hasn’t come home, but her parents look forward to the day she does and know that she is going to have an amazing life, full of laughter, happiness, and lots of love.

Maiya Elizabeth Colón has wonderful parents; she will be well loved and cared for. Maiya’s father, Wilfredo Colón, works for CGI; he returned to work as soon as Maiya was stable. He is at Maiya’s side each day before going to work and with her each evening. Maiya’s mother, Maria Colón, is one of New York State’s thousands of out-of-work teachers. She is with little Maiya most of each day and every evening. Her parents remain consistently up-to-date on Maiya’s progress. They have developed a repertoire of medical terminology and insure they understand every nuance of Maiya’s medical conditions and needs. Maiya is a lucky girl.

To date, Maiya has been in the NICU for eight weeks. When Maiya is able to go home, she will require home health visits as she will go home with the ostomy. She will require another surgery when she is between three-and-six months of age to reverse the ostomy. She will then be in the Pediatric Intensive Care Unit (PICU). .

Although Maiya is covered under health insurance, the copayments, deductibles, incidental expenses, etc., have added up to much more than her parents can afford. Her parents could use any help you are able to donate to reduce Maiya’s medical expenses.

If you would prefer to send a check, please send it directly to Wil and Maria at 120 Leonard Rd, Rochester, NY, 14616. Should any funds be left after Maiya is better, those funds will be donated to Golisano Children’s Hospital and/or The Ronald McDonald House of Rochester.

Thank you for any assistance you can give Maiya’s hard-working, loving parents.
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