Post by sammytkitty on Sept 12, 2006 1:12:09 GMT -5
Many on MAM know of me, or have heard of my twins. My twins Emily and Bridget were born at 25 weeks gestation. They were 1 pound 7 ounces each, and a mere 12 inches. Bridget spent 17 weeks in the NICU, and Em 19 weeks and 1 day. Bridget had a very rough course, and continues to have many struggles. Em did quite well all things considered, but does have a 1 1/2 year speech delay that no one can seem to understand. They think apraxia, but there is question as to whether her heart surgery in the NICU for a PDA caused nerve damage. We are in the process of having videooscopys done now, and she has her last one next week to check the vocal cords. If it is physical, nothing can be done, so we are doing pisture acrds and sign language while she continues to get speech 2x per week. She more than likely will go to developmental preeschool in March. Bridget did so well at first in the NICU. She then contracted a disease that haunts her to this day. At 14 days of age, she had her first surgery, weighing only 1 puoud 3 ounces. She got something called NEC (he intestines turn gangreous and die). Her first surgery, a drain, was unsuccessful, and three days later she had to have open abdomen surgery (laprotomy) and she lost her ileium and 1/3 of her large intestine. As a result, she had an ostomy. Things have gone down hill intestional wise everysince. She had an ostomy takdown almost 2 years ago, and has had 4 blockages since, 3 within the last 6 months. She just had another surgery and lost 50% of her small intestine on Aug 17th of this year (total form all 4 surgeris). As a result of all of this (4 abdominal surgeries and of-course a heart surgery), she is a very timid and defenseful child. She struggles from a sensory disorder. She currently has an OT to not only work on eatting because she will not eat, and yes, I mean will not, but also, she refuses to touch anything wet. Right now she only eats waffles and donuts. She just got the flu, so chicken has been marked off our list. She is very very tiny. For a year she did not grow. They suspects cf or a thriod disorder, but seeing as she was having surgery when she was supposed to see the GI doctor, not tests have been done yet. She just now grew 4 1/2 inches in the last 5 months (she was 28 inches for over a year). Her baby sister is almost as big, and her twin looks huge compared to her. I guess my biggest complaint is that when Bridget gets sick, it is not like other kids. Most kids can vomit and the parent can just think for 24 hours they will be messy. With Bridget, it results in a blockage or surgery. I also know that whatever we managed to get her to eat the last days previous, she will never touch again. With Em, sme family blames me because Bridget talks for her. I have three kids 2 and under, and when Em is crying, Bridget is the only one who can tell me why. Bridget is extremely vocal, but Em can only say 10-20 words, and those are not clear except to only me. Even dh cannot understand her. Anna seems perfect so far, just fat lol. I know I am extrememly blessed to have walked out of that hospital/NICU with two live babies, and trust me, never do I ake them for granted, I just worry nonstop about Bridget. I truely feel she will not live a long life because her intestines are working so hard against her. I never felt that way until her last surgery when I learned that heros can be hurt too, and heros die. My twins are my heros, as I could never endure what they did. I've had this nagging thought for 3 weeks now, and each day she stools too much or cries in pain, fear shoots through me. You need your intestines to live, and Em needs Bridget. Like I said, while my girls are "special needs", I am not sure if this is the right place, as they are thriving most days, and in time, hopefully Em ill talk, and hoepfully Bridget's intestines will cooperate, but for right now, these are our struggles.
Laura
Laura
Bridget and Emily Fall 2009
Anna Madeline Fall 2009
