Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Friday, July 19, 2013

Recovery day two

We last left off where May was doing great. That continues to be our trend. She is down to .75 liters of oxygen, she has had the dressing changed twice and needs it done again. Her bowels have woken back up. Her color looks great. The amount of Lortab she needs has gone way down. We will try and keep it to Tylenol and Motrin today! She is eating a ton. I can tell as soon as she sits we can try some solids again. Her tummy rumbles because the BM doesn't stay in her tummy long enough. I was finally so exhausted that I had the staff make bottles of expressed milk to give her so I could get more sleep than a few minutes!  I was so sleepy. It is strange because I don't really do anything but stress out but always feel so tired. We are hoping to go home tomorrow:) we had originally thought today but realistically tomorrow:) 
This little girl has sneaky sneaky toes... She can get almost anything off her feet. So mommy did a little Mcguvier (sp?) and put her sat monitor on her hand.. Then wrapped it with a cuff, then a sock then another cuff.. Yeah, we went there.
We had to keep notes out for everyone to see. 
She is so sober in her Lortab cloud. 
The collection at the end of the crib. Sometimes I get a little OCD and organize. 

We had to keep her feet wrapped separately so that she couldn't take off anything. She did like to have one foot out to "breath". 

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