Feedings

Last night Magnolia received a much needed sponge bath, new sheets and her first feeding.  I was also able to hold her!  It was wonderful.  It has been so hard not being able to hold her and love on her. 

Toller also came to visit Magnolia yesterday.  He misses her so much.  He kept telling her all the things they are going to do when she gets home.  After Toller left Magnolia got her first feeding in 5 days.  Prior to coming to the hospital Magnolia was getting 28ml of formula an hour for 8 hours by pump at night and taking around 35-50ml via bottle every couple of hours during the day.  Some days she would take a lot and wait longer between the bottles (which is our goal for her) and others days she would graze all day (which is not a good way to gain weight). 

Last night Magnolia's surgeon, aka our hero who saved Magnolia's life, ordered an 8 hour night feeding of 14ml an hour which is half of what Magnolia normally takes.  Before we started her feeding Magnolia had a lot of gas and a good bowel movement.  All good signs.  We started her feeding and she did okay with it until around 3:30am.  She started getting really fussy and her stomach started to become distended again.  She was obviously uncomfortable.  The nurse called the doctor and we stopped the night feeding.  Magnolia continued to have gas and another two bowel movements.  Around the same time Magnolia suddenly stopped taking her pacifier.  It was like she had no idea what to do with it in her mouth. 

Before she was extubated I had told the doctor and nurse I wanted a speech consult and I wanted them to be there as quickly as they could after she got extubated.  The doctor (not our surgeon) tried to talk me out of it but I would not budge.  The SLP arrived today and worked with her on bottling and reminded me of some things I can work with Magnolia on doing to try and get her back to where she was. By this afternoon she was taking her pacifier again and would put the bottle in her mouth (but not eat).  I am hoping that she will get back to taking her bottle.  I also ordered a PT consult.  Don't get me wrong, I completely and totally understand that everything the doctors and nurses did for her after surgery was for her health and post op recovery.  However, now that we are on the road to recovery to get home I want to get Magnolia back to using the skills she had before this.  After surgery Magnolia's arms had to be wrapped straight to her sides so she would not try to extubate herself.  When the tube was removed and she could move her arms they just laid limp by her sides.  Magnolia loves her hands and has always had them right by her face.  She loves crossing her midline with both her feet and her hands.  After surgery she now lays flat on her back with her legs in a frog position and her arms limp to her sides.  Not a good position.  The PT came and worked on her torticollis.  She also did some stretching on her foot.  She will be back to work with her on Monday as will the SLP.  We are swaddling Magnolia and putting her hands to her mid-line and up to her face like she use to love.  We are reminding her of how she use to lay and trying to get her to put her hands in her mouth. 

Our hero the surgeon, came to visit and talk about what we are going to do with her feedings.  Wednesday she had hoped that Magnolia would take half her normal feedings by pump Thursday night and half her normal day feeding by mouth on Friday, then progressing to a full night and day Friday night/Saturday and we would be home by Sunday.  That was her goal.  When she came to visit today and found out that Magnolia acts like she has never had a bottle in her mouth before she said, "Magnolia you are going to do things in your own way and on your own time.  We must remember how fragile you are.  You are a little tea cup!"  She said it with such love and understanding of Magnolia and all that she is, I loved it.  I have called her my little tea cup all day.  So now we have decided to try and get her to take 30 ml by bottle every 3 hours and what she doesn't take we gravity feed her.  The first two bottles she didn't take any but by the 3rd bottle we worked really hard and she took around 4 ml.  Small improvement, but we will take it. Tonight we are going to try 14ml over 8 hours by pump again and see how she does.  She is having lots of gas and great bowel movements.  She is still having a break through fever when we don't have Tylenol in her every 4 hours.  She is still on her antibiotic and the steroid but off all pain meds and sedatives.  She is a very strong little girl. 

Oh how I have missed you

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