Hello everyone. I've been lurking since my girls were born 19 days ago. I need to update my siggy.
Identical twin girls born at 33w5d. TTTS survivers (diagnosed w/stage 3 at 22 weeks & had laser surgery). Twin A had IUGR. Emergency csection due to decrease movement from twin A (came out 2nd so now twin
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New twin A weighed 4lbs 7.7oz. Cried but had trouble breathing and ended up on CPAP for 1.5 days. Nasal canula for 9 days.
Twin B weighed 2lbs 14oz. No cry but was breathing room air with no problem. Had cord wrapped around thigh, arm & twice around neck. Spent 2 days under lights for jaundice.
Both girls out of ICU after 3 days and into feeders/growers room. NG tube for feedings. Twin A moved to crib after 11 days. Twin B remains in incubator and has a nasal cannula due to trouble with desats and bradys.
Our hurdles are with feeding. Little to no interest in bottle feeding. Currently only trying once a day with OT. Both girls tire out after a few ML's. They both improve daily, but it is slow.
Another issue is low muscle tone in both girls. A tiny bit more apparent in twin A. Twin A has under gone blood tests and all have come back negative. On Friday, Doc ordered genetics test for Prader-Willi Syndrome. I'm told this take very long to get any results. No plans to test twin B yet. Both girls are showing daily improvements in muscle tone (ie more head movement/strength, opening eyes more, pushing against gravity with arms & legs).
NICU life is hard. Especially with two babies - splitting hospital time between both. PLUS we have a four year old at home in need of our attention too. I know you all know and understand this. I guess I'm just finally reaching out for support. We're on day 19 (almost 20). Never thought we'd be here this long. Seems we still have a long road ahead.
Re: Hello (introduction)
Peanut Butter and Jelly!
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