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TaraEdwards

The Beginning

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In 2005, I rekindled with my high school sweetheart, Scott, after 10 long years of no contact & many dead end relationships. We arrainged to meet Christmas in New York while I was home for the holidays. It was love at first site. After a few months of a long distant relationship, we decided that we had to be together. Me being a single mother of Justin (11 yrs. old) knew that I couldn't pick up & run off to N.Y. Scott was able to transfer his job here to K.C. so he moved from N.Y. to Missouri in Feb. 2006. He moved into the house that I made for my son & I and made it a home. We felt that our family was not entirely complete. In July 2006, we began trying to get pregnant. Finally, in January of 2007 it happend! Scott was over joyed to be expecting his first child & Justin was thrilled and nervous to be an older brother since he was there when I had 2 miscarriages in the past. Throughout the pregnancy everything was going great. The baby was growing, I was healthy & we couldn't be happier. That was until Sept. 11, 2007, a day that already hits close to home being the daughter of a retired FDNY firefighter. We were scheduled to be induced at 39 weeks since I was measuring big for my dates. The doctor wanted to do one more ultrasound to get an idea of how big the baby was. The sonogram tech had the most heartbreaking look on her face & then told me that something didn't look right with the baby's lung. She went over the results with the OBGYN who then made an appointment for me to see a Perinatal specialist the next day. It was then confirmed, 2 days before I was to give birth, that our baby girl would need to be delivered at Truman Medical Center as opposed to Liberty Hospital & then immediatly transferred to Children's Mercy Hospital. Josephine Carmella Quick was born on Sept. 13, 2007 at 10:24pm with Congenital Diaphragmatic Hernia. She had small hole in her diaphram allowing small intestines & spleen to move up into the chest cavity, crowding the left lung & shifting the heart to the right. Due to the heart shifting it was enlarged causing pulmonary hypertention with pressures from 95-100! The neonatal doctors tended to "Josie" as soon as she was delivered. She was intubated, put on a ventilator before she could take her first breath. Within an hour, the CMH Transport Team had her ready to go across the street. Scott & I were able to see our baby for a minute and not a second more. We were so helpless, distraught, heartbroken & scared for our daughter. It was agony to have to wait until morning before I could see her. When I was able to really meet my new child for the first time, I noticed that she was barrel chested & very swollen. Despite the wires & tubes connected to her, she was beautiful, looked like her daddy & had a full head of curly black hair. We were not allowed to touch or stimulate her in any way. We couldn't do anything but look at her. It was like someone ripped my heart out. "Here's this gorgeous baby that's all yours but you can't touch it." That has to be the worst feeling I've ever had in my life. Little did I know, there was much worse feelings to come. Three days after Josie was born, she needed a blood transfusion because her red blood count was down. Then we were told she needed what is called ECMO, extracorporeal membrane oxygenation. Basically, its a heart-lung bypass machine. Our newborn had two cannulas put into her neck to help oxygenate her blood. Most children on ECMO come off in a few days, some a week or perhaps two weeks. Josie was on it a day shy of 3 weeks. Surgeons saw a window of opportunity to perform the repair surgery on the machine which was an added risk of bleeding beacause she was on heparin, a blood thinner. The repair was a success! The doctors were able to remove the intestines & spleen from the chest cavity and close the hole with a patch. She was doing well in recovery until her blood loss went from 30 to 100 ml/hr. She was not only draining large amounts of blood from the stomach & chest drains but she was becoming so swollen that her belly was black & blue from bleeding internally. The doctors called to tell Scott & I that we needed to be there asap & if there was any family nearby to have them come too. Josie needed come off ECMO right away or she would continue to bleed to death. The neonatal doctors didn't think she was going to make it. The odds weren't in our favor. Josie's pulmonary pressures were still dangerously high for her enlarged, overworked heart to keep her going without support. Not to mention, her underdeveloped left lung was not strong enough to get oxygen into the blood or breath off CO2. It was the worst day of our lives. Watching the doctors cut these large tubes in her neck that were keeping her alive since she was 3 days old, not knowing if she would make it after they did. An hour passed. The tention in the OR of the Intensive Care Nursery was thick. Nobody thought for a second that this little fighter would still be with us but she was. Blood gases were drawn to check her CO2 levels & they came back fairly low! This was wonderful news! Althought Josie was on a high frequency oscillator vent, her frail body was doing just what it had to to stay with us. The next few months were not going to be easy. We waited almost 2 months to hold her. She had a lot to overcome still. She needed to come off the high frequency vent onto a conventional vent that would provide less support. She was now addicted to heavy narcotics such as morphine, versed, methadone & ativan just to name a few. That meant withdrawals. Josie still needed to have one more surgery to close the incision & remove an abdominal patch that couldn't be closed due to swelling. She was also on nitric oxide to bring the pulmonary pressures down. Along the way Josie had pseudomonis, a bacteris in the lungs from having a tube in there & MRSA staph infection. This poor little girl was hit with everything, she has been to hell and back. She still fought every step of the way to get through this ordeal and complete our family. On December 5, 2007 to the amazement of the doctors, nurses, surgeons & other staff at CMH, she was going home just a week before her 3 month birthday with nothing more than a nasal feeding tube & some scars that are healing everyday. Everyone that has cared for Josie, as well as Scott & myself, saw how far she has come, believes that she is absolutely a miracle. Her pulmonary hypertention is gone, her heart is back to normal size, her left lung will continue to grow up to 7 years & although an MRI showed that she had some bleeding on the brain, she may have developmental setbacks in the future, she is alive & doing well. As sick as she was & everything that she has been throught they never thought she'd be going home before Christmas let alone in 3 months. She will need another surgery in the near future to place a GT tube (feeding tube) in her stomach and repair a hiatal hernia that happend after the diaphram was repaired. We are ecstatic to have our daughter home & Justin is in heaven when he holds his baby sister. Life has been such a rollar coaster for all of us since we found our Josie was sick. Josie has given us faith, hope, love, strength and touched many lives near & far. She has earned her wings & is now a cherub.

[img:4d04a56b4f]http://cdhsupport.org/members/weblogs/upload/57/9850101044786f9e1bcecf.jpg[/img:4d04a56b4f]
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  1. AmyMiles's Avatar
    What a great story! Glad to hear that she is home. What a fighter:)