Archive for December, 2012

Baby Hayleigh Grace’s Survival Story

December 17th, 2012 by Amber Perry

Hayleigh Grace Sears was born July 14, 2012 to Amber Perry and Danny Sears after a very complicated pregnancy. She was born by emergency C Section at 2:51 pm at Baptist Hospital in Nashville, Tn due to me hemmoraging. She was born 15 weeks early and weighed 2 pounds even. She was immediately admitted to the NICU. I didn’t even get to see her until the next afternoon. But I got to see pictures, and to me, she was beautiful. 🙂 It wasn’t until the two days after she was born that we chose her name, Hayleigh Grace. She had a rough start simply because she was so early. She had the normal preemie struggles and seemed to be coping well up until the morning of July 22nd. We got a call that morning from her NICU doctor. They said we needed to come to the hospital right away. When we got there, we were taken into the chapel and met by a large team of doctors and nurses. We knew then, that it wasn’t good news. Our little girl, in addition to her current struggles, had gotten Necrotizing Entercolis (NEC). We were told that NEC was a condition that some preemies get that affects the bowel. Essentially, her bowel was eating away at itself and had may have formed a perforation (or tear). She would have to be transported by Angel One (Vanderbilt’s ground version of neonatal life flight) right away to undergo a bowel surgery to find out how severe it was. We cried and called family and proceeded to Vanderbilt. It wasn’t until that afternoon we finally got to see our daughter. She was being prepped for surgery. At this point her weight had dropped down to one pound seven ounces. We were terrified. We each kissed her goodbye and went to the waiting room to wait with our family. A few hrs into the surgery, a nurse came to find us. She said surgery didn’t go well. When we arrived they were trying very hard to revive our tiny baby girl. She coded (died) twice during her surgery. But the team revived her each time. After surgery we were told that her bowel had in fact torn and they had to remove a piece of it. Because of this, she had a stoma (one end of her separated bowel) that protruded through the skin of her belly. This is where her stool came from. She had a second surgery since then to explore her belly more in depth. She handled that surgery fine. Later on, they discovered she had a PDA in her heart. Its basically a portion of her heart that inst connected, but should be. They did a round of Indocin and it closed, but not for long. It eventually reopened. It is not causing her any clinical problems as of now, so they plan to watch it until she is a year old and make a decision on whether to do heart surgery then. She also had developed a grade two brain bleed and fluid around her brain. Thankfully, both issues seem to be resolving. She also developed Retinopathy of Prematurity and as a result had a laser eye surgery. She now has a ‘dragging retina’ on her right eye. She is closely followed by a pediatric ophthalmologist. She had her bowel reconnection surgery (third bowel surgery) on 10/30/12 and did well. We got to bring her home from the NICU on November 22, 2012, Thanksgiving. What a wonderful thing to be thankful for! After getting home, we had some feeding issues, and her belly became distended. We ended up back at Vanderbilt for a few days. After some bowel rest, the distention went down and we began feeds successfully. We were discharged. A few days later, we were having the same problems so we were readmitted. This time, Hayleigh had her fourth bowel surgery to try to figure out what was wrong. They ended up removing some adhesions (spots where the bowel had stuck together). Hopefully this will fix the problem once and for all. She has fought and struggled her entire life so far. And her struggle is far from over. Every single day with Hayleigh has been and will continue to be a blessing. She is fighting every day.

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Baby Ramsey’s Story

December 17th, 2012 by missy

Ramsey’s Story NEC Awareness and find a Cure

November 3.

RAMSEY’S STORY—— In August of 2012, I developed preeclampsia and had to have Ramsey, @ 30 weeks and weighed 1lb15 oz. He was very strong, and was progressing great. He was only on the ventilator for that 1st night. We were at the NICU everyday with him, from morning till night. On the 5th day, I was able to start holding him and it continued everyday for 2-4 hours daily. On the 15th day we got there early and the doctors told us they were running tests, due to the fact that his heart rate was high. As I was holding him, the doctor came in and told us that he had developed NEC, but gave us hope because he had no tear in his bowel. We were in shock and disbelief and an overwhelming sickness came over us. That day had a tremendous amount of highs and lows. That night we stayed overnight in his room and the respiratory therapist said he would have to put him back on the ventilator and I just lost it!! The next day was also filled with many highs and lows and many doctors and nurses were in and out of his room. That afternoon, they informed us that they would have to transfer him to Children’s Hospital (Dayton). We were very scared and nervous; upon arrival the doctor met with us in the family room in the NICU and told us just how serious his condition was. They started another blood transfusion, and more antibiotics and we sat with him, kissing and talking with him. Late that night, they told us that they were going to sedate him to make him more comfortable. Little did we know at that time, it would be the last time we would see him with his eyes open. They told us to go over to the Ronald McDonald house and get some sleep and continue pumping my milk for him and that the next day would be hard. Early that next morning, we got to his bedside, and I started crying hard, as he had tripled in size…. The nurses and doctors told us it was because his blood pressure wasn’t allowing him to urinate… his blood pressure was 17 and his heart rate was 237. As we sat watching the monitors go up and down, my best friend Mandy, showed up to see us. The surgeon came to his bedside and said he still had no tear in his bowel, but he couldn’t put a drain tube in because his vitals were not strong enough to handle it. They then told us that they were going to run more tests and to try and go get something to eat. Within 20 minutes of being across the street, I got a call from Children’s; I couldn’t answer it so my husband did. They told us to come right over. I then lost it and my husband and Mandy tried to comfort me by saying maybe there were some forms that needed to be filled out. I kept praying the whole way over and asked them both to pray as well. As we approached the NICU they brought us into the family lounge. A nurse was hugging me telling me not to cry, and as we sat down, our Doctor came in and on his knees in front of me, said, “I am so sorry he is dying. “ I pleaded and begged to please try something else, but he said that there was nothing else that they could do. He walked us to his bedside as they were bagging and doing CPR, and unplugged him and handed him to me, so that he could die in my arms. I told him how much I loved him, and how proud I was to be his mom and that he had fought so hard. Words cannot explain or describe the emotions that I was going through. They then let me take him in to the family lounge and let me hold him for 3 hours until the funeral home came to get him. There is not a second that goes by that I don’t think about him or miss him. I am doing this page to help keep Ramsey’s memory alive and hope to spread awareness and hopefully find a cure some day.