Playing catch up

I arrived at the hospital on March 9th for my NST only to discover Savi's HR to be in the 80s.  30 minutes later she was out of my belly and set to be transported to Kosair Children's Hospital by 10 that evening due to being 6 weeks and 1 day premature.  She weighed a whopping 7 lbs, 7 oz.  Once getting to Kosairs, the answers to our questions were revealed:  Savi has a cleft palate, anal fistula, heart murmur and being fed through an NG tube.  She has come a long way in just 2 wks being weaned completely off the vent and straight to room air.  However, March 21st came with news we were not ready to hear...Savi's genetic testing came back with the result of a syndrome by the name of Pallister-Killian syndrome.  I had actually looked it up during my pregnancy due to my complication of polyhydraminos and docs suggesting possible Down syndrome.  Whether she has a mild or severe case of it will only tell with time and like it has been said it is up to Savi how well she does.  It's a very rare disorder limiting a child's ability to walk, talk, eat normally, etc., but the worst of it, her lifespan can be shortened.  We all know who holds the true answer for that though...Jesus Christ!

As of today we continue to wait on results from her brain MRI and she was assessed by a speech therapist who suggested a swallow study due to her weak gag reflex and evaluations from OT & PT due to her weakened arm & leg muscles.  Her main obstacle in the way of getting home to us is her feeding and gaining her weight back (she dropped to 5 lbs, 15 oz.) since birth.