New to this board

Hi,
My name is Traci. I have twin boys born at 27w3d gestation. They turned 12 months on 8-9-03. Ethan is doing quite well, while Kaleb has a trach, g-tube, O2, and a vent. Kaleb's amniotic sac completely ruptured at 15 weeks gestation. Ethan's sac remained intact until delivery. I was in the hospital under constant monitoring and on strict bedrest from the time of the rupture. Fortunately, the pregancy continued 12 weeks POST rupture. I never developed an infection and the babies did not once show signs of distress. However, Kaleb never regained any fluid..I mean he had virtually none, perhaps a total of 2.5 cm when normal ranges from 12-25cm. We were told that without the fluid, his lungs would be severely underdeveloped for his gestational age. Finally after 12 weeksl, my body went into labor and the boys were born via c-section. Kaleb weighed 2.1 and Ethan was 2.6. Kaleb spent his first 6 weeks on a high frequency vent, then the next 6 on a traditional vent. He experienced some siezures early on, but outgrew them by discharge. Neither he or Ethan experienced any brain bleeds...which we are so grateful for. We escaped NEC, but both did have to have PDA ligation. After 3 months of trying to wean from the vent with no luck, Kaleb was trached. This was a joyous event for our family! I could see and kiss my baby's face for the first time! I know many of you can relate. Kaleb then graduated from NICU to PICU, where he lived for the next 3 months. His brother Ethan came home the first week of November, on their due date. Kaleb joined us on January 29th, 2003 after nearly 6 months in the hospital. Currently, he on only on 1/8 L of O2 and is OFF the vent 18 hours a day. He wears a PMV all day and enjoys vocalizing. He is sitting up and standing with support. No hearing or vision issues. BUT, Kaleb won't eat. This is the current issue that is causing me the most stress. His weight gain has been slow, but steady. He gets 5 tube feedings a day through his pump. We offer solids 3 times a day, with little success. He gets speech/feeding therapy once a week in our home. He used to take a bottle with fair success, but now wants nothing to do with it. He puts a lot of things in his mouth and chews, just not food. Any suggestions? He has had a history of spitting up frequently, but ph probe came back normal as did upper gi. He still gets very gaggy and wretches sometimes...like dry heaves. He is on Alimentum formula, which did help with the vomiting. Thanks for listening, sorry this was so long. You are all wonderful.
Traci Holder

[christyw]

Traci,

I must first say that Kaleb is just doing SO WELL! As I read thru the end of your post I was just amazed. I know you are so grateful too...about the lack of brain bleeds and the good respiratory and developmental progress. Gaithy didn't walk til she was 2.5 yrs old (back in Feb '03.) She is almost exactly 2 yrs older than your boys, was born at 27-28 weeks, had no amniotic fluid to speak of either (however, I never lost any fluid, so apparently she just stopped making it)....c-section, 5 months in NICU, 6 months in another ward after the trach and placement back on the vent for long term. She's been off her vent since May (completely) and hoping to decannulate in the spring.

She doesn't eat either, not much. She turned three in august, and just a few weeks before that she started to suddenly eat about 4-6 oz. of Blue's Clues applesauce in a day's time (in about two different sittings). However, that's about all she'll eat. She TRIES to drink from a cup and EXPECTS me to offer her a drink when she sees me getting water out of the refrigerator door water dispenser. So, I "give her" a tiny sip - she doesn't care too much for it, but always wants it! Anyway, she wouldn't eat ANYTHING for so long, and the blue's clues applesauce was very sudden after a year of REALLY trying to feed her at least twice a week. So, it CAN happen and it can be sudden - when you think you're getting nowhere! As "on target" as Kaleb seems to be in light of his medical issues early on, he may start eating more quickly, so don't let my experience discourage you! Gaithy had no brain bleeds either (she weighed one pound at birth), and no CP or anything - but she's behind. it's only now that she's really catching on to EVERYTHING that she is starting to be INTERESTED in eating and in everything else! Â*It seems that since the child missed the initial "reflex" eating that comes with babies - they have to understand eating in order to do it. That's the way it is with gaithy anyway. The more she seems to understand that it's good and is ok, the better she does.

Good luck! and welcome to the board!!!!!

christy Â*