Celebrating Down syndrome awareness month by sharing stories. Todays story was sent in by Laneys mom. She writes: Laney came home from the hospital at seven days. She had a negative ECHO and a clean bill of health. Tiny. Born at 5-9 she dropped to 4-4 on discharge because she didnt eat well. Feeding, it turned out, was not her problem. Her stools were ribbons and FOUL. By 15 days of age her belly got so distended, it was shiny tight and she was SICK. X Rays and biopsies showed Hirschprungs Disease (no innervation to last portion of her bowel). She needed to have surgery but was too tiny and sick to pull through it. We dealt with tube feeds and bowel irrigations till she was four months old and could have her surgery. In the meantime she developed RSV and pneumonia. She had severe apnea. One episode was so bad she arrested (stopped breathing and had no detectable heart beat). I did CPR and got her back into the hospital. She pulled through and came home on oxygen and monitors. Bowel surgery at four months left her with an ostomy but that was not an issue for us. Her airway was. Time and time again she stopped breathing. Finally she was strong enough to tolerate airway surgery. So grateful they were able to rebuild her airway without needing a trach. She spent 72 days in hospital out of her first four months. In and out. More surgeries. But she still kept having gray sweaty spells. I insisted on another ECHO despite having two normal ones. That ECHO showed three defects, no wonder she was dusky! She was fully repaired by nine months. Thank you Lord! He has brought her through 13 surgeries to date. Numerous hospital stays and ER visits. Multiple infections. Multiple infections. Question was, If her bowel, airway, heart were repaired, why so sick so often? High fevers, three sets of ear tubes.. Still as soon as she came off antibiotics she ran high fevers again. I took her to an immunologist who did routine studies that were normal. Luckily she dug deeper and found answers. A rare immune deficiency. Curable? No. Treatable? Yes. Thankful. She now gets weekly infusions of immunoglobulins to help her fight infections. Hooked up to pumps and tubes every week but she handles it like a champ. A bumpy road medically? Yes! But each of those life threatening moments made her life dearer to me. She fought for life. She clung to me. I clung to Gods promises. HE designed her from before time to be my daughter and HE knows the number of her days on Earth. My job was just to love her through it all. As health improved, my baby took off learning and surprising everyone! Therapy and love and prayers. Thats a good recipe for any child to flourish. But more important than how shes grown and thrived is how she has touched so many peoples lives. Shes a hugger and can cheer anyone up with her kisses. My other children are well loved and cherished, but this little princess has brought such JOY. Pure Joy. I made up a little song when she was a baby and would sing it over and over to her. Now she sings it with me. God made me. God made me. I am very special, cause God made me!
Posted on: Fri, 17 Oct 2014 11:30:00 +0000
Trending Topics
Recently Viewed Topics
© 2015