Monday, May 11, 2009

Set back day

We were spoiled by so many good days in a row.  Today was a tough one! After days of nurses who were 10's, we had a nurse who was.... not a 10.  Her young intern was a 10 though!

O was not very interested in bottle feeding today. She was more interested in sleeping!  She would eat a very little, then would get tired and not want to work so hard any more.  The doctor said that this is typical pre term baby behavior, but that it may need more help to be overcome because of the Down Syndrome low muscle tone.  Tomorrow an occupational therapist (OT) will work with the three of us.  

She will not be going home until she is feeding by bottle completely.  So, O is already teaching us to slow down in our expectations and just enjoy each day.  And she is SO VERY enjoyable!!!!  We cannot believe what a neat kid she is!  She is worth everything!!!!!
O had her follow up echo cardio gram today.  We should hear the results tomorrow. The first one was good, so we are hopeful.  She did not care for the test, but as usual she was a really brave girl.  I tell you! She is the coolest kid! Yes, we are probably incredibly biased!!! :-)
Here is our little angel sleeping instead of eating.  

Tomorrow  will be a better day!
But everyday it is really wonderful to be with Baby O.
When she opens her eyes and looks at us it is The Best!


ds.mama said...

It looks like she didn't fight that echo too hard, lol.

Do you do a little oral stim with her prior to trying to feed her? I'm sure the OT can show you some tricks.

Signe said...

she is just so precious....ahh you must be in love. Sorry about the setback. If you can, get a consult with the speech/feeding therapist. They can be so helpful in providing ideas for stimulating the mouth/oral muscles.