Post by gabeandgavinsmommy on Sept 23, 2006 2:17:19 GMT -5
Hi everyone, this is probably going to be a long post.
I'm Christina, mommy to 2 angels lost due to m/c and 1 angel, Gavin lost at 6 1/2 months and his surviving twin Gabe. Gabe was born at 26 weeks and spent 5 months and 3 weeks in the hospital (nicu, picu & peds) before coming home. He had a lot of issues feeding and had a ng tube for 11 months. We were going to get a g tube but he started eating better on his own. He had terrible reflux and would throw up entire feeds. He was put on reflux meds which helped a lot. He was on a ventolater for 2 months and then o2 via nasal cannula for 3 1/2 months. He weighed 1lb 15oz at birth.
He had a bowel perforation at 10 days of age. They put a drain in and that helped for awhile but he ended up needing surgery. He lost 13cms of intestine and had an ostomy for awhile. He was diagnosed with cystic fibrosis, which is a fatal genetic disease. It causes the mucus in the body to be very thick so bacteria grows in his lungs more easily and the mucus in his intestines is thick. His pancreas doesn't function properly so he takes enzyme pills before he eats to help him digest food. We give him chest physiotherepy to help break up the mucus in his lungs and he gets nebulized medications once in awhile, right now it's just when he's sick. He's has 3 hospitalizations since coming home. The median life span is 37 years old. People with cf have a hard time gaining weight so we have Gabe on a high fat diet. He's still really small and not on the growth chart yet. He's 22 months and is 29 inches and weighs 19lbs.
He had a lot of develomental delays and was seeing an OT. Now we just go to developmental clinic for assessments. He was 11 months before he could sit by himself and 13 months when he started crawling, although he started walking at 16 months. He was always behind in fine motor skills too. He has gotten a lot better and has basically caught up. He has always been ahead in verbal development.
So for meds he takes enzymes to help him digest food, a special vitamin for though with cf, iron supplements, and reflux meds(prilosec) and ventolin via aerochamber. We go to the cf clinic every 3 months right now. Before it was every month. There we see the cf nurse, cf DR, dietician and physiotherepist.
Well I think that's it. I'm so glad they started this group and I can't wait to get to know you all.
I'm Christina, mommy to 2 angels lost due to m/c and 1 angel, Gavin lost at 6 1/2 months and his surviving twin Gabe. Gabe was born at 26 weeks and spent 5 months and 3 weeks in the hospital (nicu, picu & peds) before coming home. He had a lot of issues feeding and had a ng tube for 11 months. We were going to get a g tube but he started eating better on his own. He had terrible reflux and would throw up entire feeds. He was put on reflux meds which helped a lot. He was on a ventolater for 2 months and then o2 via nasal cannula for 3 1/2 months. He weighed 1lb 15oz at birth.
He had a bowel perforation at 10 days of age. They put a drain in and that helped for awhile but he ended up needing surgery. He lost 13cms of intestine and had an ostomy for awhile. He was diagnosed with cystic fibrosis, which is a fatal genetic disease. It causes the mucus in the body to be very thick so bacteria grows in his lungs more easily and the mucus in his intestines is thick. His pancreas doesn't function properly so he takes enzyme pills before he eats to help him digest food. We give him chest physiotherepy to help break up the mucus in his lungs and he gets nebulized medications once in awhile, right now it's just when he's sick. He's has 3 hospitalizations since coming home. The median life span is 37 years old. People with cf have a hard time gaining weight so we have Gabe on a high fat diet. He's still really small and not on the growth chart yet. He's 22 months and is 29 inches and weighs 19lbs.
He had a lot of develomental delays and was seeing an OT. Now we just go to developmental clinic for assessments. He was 11 months before he could sit by himself and 13 months when he started crawling, although he started walking at 16 months. He was always behind in fine motor skills too. He has gotten a lot better and has basically caught up. He has always been ahead in verbal development.
So for meds he takes enzymes to help him digest food, a special vitamin for though with cf, iron supplements, and reflux meds(prilosec) and ventolin via aerochamber. We go to the cf clinic every 3 months right now. Before it was every month. There we see the cf nurse, cf DR, dietician and physiotherepist.
Well I think that's it. I'm so glad they started this group and I can't wait to get to know you all.
Bridget and Emily Fall 2009
Anna Madeline Fall 2009
