January 28, 2012

First of all I wanted to answer a question that I received throughout the day.  In some of the pictures Harli has a patch on her head, this patch is her IV they placed for the blood transfusion.  They originally tried in Harli's foot but were unsuccessful. Since she is so small the easiest place for an IV is the head and that is suppose to be the least painful, even though it looks horrible.

Today was a day that the Culy family needed.  We had a good report from our nurse, Blair was feeling so much better and was able to visit Harli.  Last night Harli only had two episodes and only one of those required stimulation.  There were not many changes throughout the day.  They did raise Harli's vapotherm machine from three liters back to four liters per minute.  They did not see much change the last time they tried this, but figured it was not going to hurt her only help.  They did mention again about putting her on CY-PAP but decided they would wait and see how she responded to the four liters of vapotherm.

Harli was quit the wiggle worm today.  It did not matter which way the nurses laid her, she would decide it was not the way she wanted.  Harli continues to have the strength to move her head from side to side, but occasionally gets stuck in the middle.  She did not mess with her tubes at all today which was very surprising.  Harli has been having more frequent bowel movements, she had one at eleven last night, and another one at five this morning.  Harli's IV that was in her head was removed last night after it quit taking saline.  Harli for the most part has been eating all her milk even though they had raised it from 2cc's to 3.5cc's.  They are hoping if everything goes good this week by Friday they will have her on full milk and no more liquids.  We will continue to pray for a successful week, but will not get our hopes up incase it does not happen.

Tomorrow they will measure her length again.  Today she weighed 2.1 lbs which is up one ounce from yesterday.

Harli giving it all she has to stand up.  Not sure she is ready for it though. 

All of a sudden she got camera shy.

Relaxing now that she is free.

Kind of looks like she is in a straight jacket.

"So do not fear, for I am with you; do not be dismayed for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."  Isaiah 41:10