baby sofa’s big load

Sophia got to have her two favorite nurses–both in one day!  It can be busy for them because she is usually paired with the twin boys next door, but somehow they seem to be able to still give her lots of attention.  The days go so much better when you have experienced nurses that are able to anticipate your needs and have a sense of what parents are going through.


Siobhan decided she was ready to hold Sophia for the first time, although she wasn’t quite ready to change her diaper (even though the rule is whoever is holding her, changes her)!  I think she heard us talking about the extra large diapers Sophia had this weekend.  Two of them back-to-back totaled 11 ounces–just urine–(and we were changing her regularly)!  (Uncle Tom, I figured you’d be curious about this).  They’ve increased her diuretics to help her CO2 retention and reduce the fluids her heart has to pump–they are definitely working.  As we suspected, most of her weight gain was water weight.  Until her weight stabilizes again, she has moved up to size 1 diapers–both to accommodate her large output and her growing bottom.  


Today was a more normal day of napping and awake time–yesterday on the other hand, Sophia was awake most of the day, finally going to sleep at 1AM.  It was good to see, however, after she had a really sleepy day on Friday.


After we mentioned to the GI doc this morning that we were concerned that Sophia was losing her sucking and swallowing skills–not sucking on her pacifier and gagging so easily, she sent neurology in to consult again.  After a visit by the on-call neurologist (who basically said–she has Down Syndrome and will have these issues), Sophia spent the rest of the afternoon proving to us that she can indeed still suck on her pacifier.  


Yesterday, Sophia’s two-year-old buddy Hillary came to visit “Baby Sofa” with her parents.  She tried out Sophia’s tumble form chair, read some library books, walked down to the river, and avoided the big mastiff from Bark Avenue pet therapy.  Unfortunately, it got a little chaotic for them as we also had visits from the cardiology team, the OT, the nurse and Grandma all at the same time.  


We went to a wedding Saturday afternoon, and it seemed strange to be driving around with an empty car seat without our baby.  At first I would tell people that Grandma was baby-sitting, and then I realized that not only was Grandma with her, but Sophia also had an RN looking out for her!  John keeps reminding me that we have access to the most qualified babysitters we’ll ever have, so we should really take advantage of it.