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Corine’s story

December 10th, 2007 by Susan Belisle

To the memory of my Daughter Corine Bay Feldman.
Born April 27 2005 -Died June 23 2005.

After losing our first child at 20 weeks gestation and almost losing our only surviving child to pre-eclampsia I convinced my husband to try for one more. We met with 14 doctors and weighed out all the possibilities. I had a 66% chance of getting pre-e again. We also found out that I have a rare newly discovered blood disorder…Low protein S. I was to take heparin shots twice a day to prevent blood clots during the pregnancy. Problem solved so I thought.

At 28 weeks I was admitted in the hospital for round the clock observation. Our daughter was diagnosed with IUGR (Inner Uterine Growth Restriction). I spent 28 days on bed rest and during that time my child grew 1/2 pound. She was born at 32 weeks weighing 2 pounds exactly and was only 12 inches long. She was healthy at first. Never on Oxygen. Then about two weeks in she showed signs of NEC and they stopped her feeds. She was fine. One day she was on full feeds and ready to move into a crib and 24 hours later she was diagnosed with NEC; 3 days later she had emergency surgery and they removed 1/4 her lower intestine. Some days she was good, others not so good. One day they said she was ready to come off the oxygen then 3 days later she was gone due to pulmonary embolism. She lived for 56 days and it was a roller coaster all the way.

Some children can live though the NEC but mine just kept getting knocked down.

She would pull though one problem just in time to get clobbered by something different.

Catherine’s story

December 10th, 2007 by Unknown

Catherine Marie was born 2-19-2007 at 32 weeks and weighing 3lbs and 13 oz.

She was a twin and sister weighed 4lbs 1 oz. Catherine had the cord wrapped around her neck three times. Two weeks after birth she developed NEC and was rushed to Children’s Hospital. She never required surgery as her intestines near perforated but she “bottomed out” several times requiring her to be placed on a ventilator for 24 hours. Now she has cerebral palsy and we are still learning as to what extent.

Pray for her.

Kaitlyn’s story

October 31st, 2007 by Cathy Evans

December 16, 2005 at 5:30pm Kaitlyn Jesse Evans was born by emergency c-section because her mom had severe Preeclampsia and HELLP. Kaitlyn was born into this world screaming, she was a fighter. Born at 28 weeks gestation she weighed 1 pound 8 ounces, and was 12 inches long. She breathed on her own for an hour before being placed on CPAP. The problem with the CPAP was the size of the nasal cannula, it was too big, later she was intubated and placed on a ventilator to conserve her energy.

Five days later she had bilateral hemathoraxs, and had two chest tubes put in. Except for the lung issue, Kaitlyn was making great strides. She was doing well with her feeds, was gaining a little weight, and had negative ultrasounds of the brain. Christmas Eve I was discharged and Christmas morning they removed Kaitlyn’s chest tubes. Things where looking up.

We spent countless hours in the NICU just trying to be the best parents we could to out first born child. Everyday we had more hope that she would come home, unfortunately… that never happened.

January 16, 2006 8:00am, I received the call from the NICU that Kaitlyn was not doing well. They ordered an x-ray and she had free air in her belly. We arrived at the hospital and met with a surgeon and the Neonatalogist. She was diagnosed with NEC and they believed from the x-ray, that it only effected the ascending colon. They would go ahead and do the repair. We walked her down to the OR and said goodbye. We sat and waited in the waiting room. About forty minutes later the surgeon appeared and escorted us to the “quiet room” nothing good ever happens in the “quiet room.” When they opened up her belly the found that ninety percent of her small bowel was perforated, they said it was inoperable and unsurvivable. That was when our hearts where broken. We went into a quiet room in the NICU and had the hospital chaplain baptize her. Making sure that she was not in any pain or discomfort we were able to hold our little girl and spend some peaceful time with her. We turned off the ventilator and she passed in our arms. She now watches us from up above. We love and miss you, our sweet Angel Kaitlyn.

I can only hope that one day there will be a cure for NEC. I wish it would not destroy any more lives. Thank you for allowing me to share my story.

Ella’s story

September 9th, 2007 by Nikkole Hollander

My husband and I were finally married September 22, 2006 after a six year relationship. We had our careers, our marriage and bought a house…all with the plans of starting a family right away. I was pregnant within two months and we were ecstatic.

Other than evening nausea, my pregnancy was pretty uneventful until around 25 weeks. I started swelling and by the end of the day could hardly walk. The doctor told me I was getting Preeclampsia and put me on bed rest. The baby was measuring small but they didn’t know why. I was on bed rest for four days before my husband had to take me to the hospital with severe chest pain. I had developed severe Preeclampsia and HELLP Syndrome at 26 weeks. I was in the hospital for five days before they decided they couldn’t wait any longer to deliver. My beautiful and perfect baby girl was born on May 10, 2007 at 9:25am at 27 weeks gestation and rushed straight to the NICU after being intubated. She weighed 1 pound, 3.6 ounces and was 11.5 inches long. She did well the first couple of days but was then diagnosed with Respiratory Distress Syndrome because her lungs weren’t working on their own very well.

They were treating her RDS and she was having the best day she had so far on May 30. They were decreasing her ventilator settings, her feeds were going well, her brain scans looked good, and her x-rays were improving. We were visiting her that evening when the nurse discovered that there was blood in her stool and she hadn’t digested a lot of her feeds for the first time. X-rays were done, she was diagnosed with NEC and transferred to the Cincinnati Childrens Hospital within a couple of hours. On May 31, 2007 Ella had a surgery at 4:00am and then another at 5:00pm. She made it through both surgeries and was stable. My husband and I had been up for 36 hours at this point so we ran home to shower before returning to the hospital. We were home for 20 minutes when the hospital called and said that she wasn’t doing well and they were resuscitating her. We rushed back to the hospital and watched them try to save our baby for 15 minutes before her heart rate diminished and they turned off the machines.

I wish no other family in this world had to ever go through that kind of heart wrenching, devastating trauma. Ella developed NEC and passed away within 16 hours after having a good day in the NICU. That is how devastating NEC can be. My mission is to make Ella proud of me by teaching others about Preeclampsia and HELLP Syndrome and to help parents who have similar stories.

You can meet my Ella on her website: www.caringbridge.org/visit/ellahollander