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| Alexis, my miracle girl. Alexis Nicole was born on July 18, 2002 at 4:31AM. What appeared to be a "sleepy" baby due to the magnesium that I had received during labor, ended up being a baby girl fighting for each breath. Just 6 hours after birth, I was given the devastating news that Alexis was born with Hypoplastic Left Heart Syndrome. I vaguely recall the Neonatologist telling me that I had three options, The Norwood, a Heart Transplant, or Compassionate Care. Time was not on our side, and the decision needed to be made quickly. Without immediate intervention, Alexis would die. I met with Dr. Leonard Bailey to discuss Alexis’ chances of survival, and to learn more about each of the procedures that could save my daughter’s life. After much consideration, Alexis was placed on the National Organ Donor Waiting List. Over the course of Lexie’s hospitalization, things went from bad to worse. Alexis was intubated, became septic, developed numerous infections, had seizures, went into congestive heart failure due to persistent pulmonary edema, required more and more medication, and was placed on a "hold" status for transplant on several occasions. On more than one occasion I witnessed my baby girl go into cardiac arrest after suffering some severe seizures. Several times a donor heart had been offered, however based on Alexis’ health, the heart had to be passed on to someone else, that could hopefully make it through the surgery. On January 19, 2003, six months after Alexis was born, her team of physicians called a meeting to discuss her further plan of care. At this meeting, removing Alexis from the Transplant List was discussed as Alexis’ lungs were failing. At that point in time an infant heart/lung transplant was not an option. All I can remember saying was that I did not wait this long to just give up. Taking her off of the list was not an option in my eyes, so the wait continued. On January 22, 2003 at 4AM, six months and 4 days after Alexis was born, I received a call that I had never expected to receive. Maria, our transplant coordinator was on the other end telling me she had good news. They found a heart for Alexis. Sending Alexis into surgery at this point was very risky, but we had no other options. She could die during her transplant, or she WOULD die in the NICU. It was tough to say goodbye, but after all she had been through thus far, I knew she was strong and she would fight till the end. 4 hours later, a beautiful, pink baby girl returned, and the recovery began. Alexis was placed on a high frequency vent, along with numerous medications. After several failed attempts to extubate, Alexis was trach’d on February 24, 2003. On March 16th, 2003 Alexis was discharged from the NICU. 8 months after birth. Today Alexis is my 5 year old little spit fire, with TONS of personality. She is in kindergarten, loves Spiderman, Drake & Josh, ICarly, riding her quad, playing baseball, singing, dancing, wrestling with her brother, playing Dr, and being a mommy to her babies, Tommy, Lisa, and baby Applesauce. On January 22, 2008 Alexis was 5 years post transplant. She has never had a rejection, and was recently able to successfully have her trach removed! Alexis’ life has not always been peaches and cream, but I would not change it for the world. I owe her amazing heart to our donor family. Nicholas Flores is our guardian angel, and he will be in our hearts forever. Suzanne Hollander |
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| Alexis Nicole |