Sophia’s due date

I told Sophia all day that since it was her due date, she was now old enough to eat like a full-term baby.  She did eat really well for a few of her feedings; stayed off all oxygen and air flow all day long (and lost the stickers on her cheeks for the nasal cannula); gained 50 grams; didn’t have an emesis all day; and seemed to figure out that if she squawked a little bit, Papa or Mama would pick her up.  

 

The cardiologists started her on another diuretic to keep the fluid off her lungs and hopefully reduce her respiration rate and maybe help her gain weight.  She also had another echocardiogram.  The initial reading is that her coarctation repair looks great and there is still red and blue blood mixing in her heart because of the two holes.  She tolerated the lengthy echo when Papa gave her Sweet-Ease.  It is the greatest stuff–sugar water–but it keeps little ones calm during painful procedures.  She got some the very first night when they put the IV in her forehead, and ever since then, has loved the Sweet-Ease!  The nurses say Karo syrup will do the same trick at home.  I’ll think we’ll definitely be bringing it with us to doctor’s appointments.  

 

Her pH came back normal, so they don’t think her reflux is burning her (too acidic), but she definitely has issues with it–arching her head back to try to control it; gagging when she starts to eat, etc.

 

Her occupational therapist was really pleased with her progress so far–her scar from the incision on her back is lessening, and she is showing more resistance in her limbs.  They describe most babies with Down Syndrome as “floppy,” and Sophia definitely fits this description.  You’ve probably seen her “frog legs” in some of the pictures.  We have a lot of work to do to help her strengthen her muscles.  We even have to do tummy crunches for her (maybe I’d do them too if someone else was lifting my arms and legs for me).  This is supposed to help her get better prepared to crawl and roll over.  The way she moves her head from side to side while she’s on her tummy, it looks like she’s ready to roll over any time!