Moving right along

Somewhere in Abby's third week in  the hospital, I think the staff and I began to realize at the same time that Abby and I live here.  There was a sudden and dramatic shift in thinking.  I began to hear sentences from therapists like "I'll be working with her five times a week" and a child life specialist who reminded me that she "met Abby in endoscopy several weeks ago".  We all understand that we're on a long road. 

She began PT, OT, speech and music therapy this week.  She has a hospital routine plan, to help the nurses and all of us make Abby's life here as predictable as possible.  She has sticker charts and medical supplies that stay here now.  Flowers are beginning to die and balloons are sagging.  Life is moving on, and we are jumping on board.


Untitled from andrea on Vimeo.

We moved from 'she's in the hospital' (short term thinking) to 'when she's able to be home' (long term innuendo).  Social workers have been by to see how I'm coping, and the doctors are no longer discussing discharge.  They see us last because we're not going anywhere.  Even I am getting a little panicky at the thought of heading home. 

I'm generally a pretty confident mom. but I find myself calling the nurse to see if she feels warm or check her g-tube drainage.  These are things I know, but not quite the child I know.  She's different since her surgery.  Her tummy is different and definitely her habits and signals.  It makes me nervous.  It'll take some time to get to know this girl of mine again.

She is on formula feeds through the g-tube at 20cc/hr now.  We had her up to 35 yesterday, but decided she does better through the night without it running, so we switched to a higher calorie formula, which she did not appreciate very much at all.  114 cc went in, 85 came back out.  Not so good.  So back down to 20.  She needs to get to 90 cc/ hr.  It seems like very far from where we are.  The good news is, besides feeding she looks GREAT.  If she didn't need food at all, she would be ready to go home today. 

The surgeon really wants the femoral line out as quickly as possible.  There was talk of taking her down to the O.R. for a central line, but we all decided to give it a few more days. The possibility of infection in the femoral line is very real and potentially devastating.  It would not be a set back, but a start over for us.  We are just hoping and praying it works out the way we want it to. 

When I woke up my fourth Sunday in the hospital, all I could think of was how badly I wanted to get my kids ready for church and rush out the door to make it there 10 minutes late (as usual). I wanted to be at home with my husband, but we're not. He is taking care of our family, I am taking care of our daughter, everyone else is taking care of everything else.

Sarah and Emily were able to come to the hospital to visit Abby yesterday.  Hannah was sick and had to stay away.  It meant the world to me to see them here. 

Seeing Emily and Sarah just warmed my heart, and encouraged Abby to get in her chair and go down to the play room.  It went by too fast, but I laughed a lot because my wonderful Emily thinks sick people are ewww.  Hysterically, she's a little afraid of people in wheelchairs.  I really enjoyed my time with them.  I think it made Abby and I miss home more than ever.  It is comforting to know that it can't go on forever and this too shall pass. 

Abby is in a wonderful hospital.  I thank God for the entire staff.  They make us feel at home and I know they are doing everything they can to keep Abby safe.  There is a little guy down the hall from us who has CP like Abby and is dealing with very similar issues.  He has been here for weeks and is 13 like her.  He lives in a children's home for kids with disabilities.  I walk past a sign taped to his door saying a little something about him. Jordan.  Jordan who lays in his bed alone. 

I don't know how I feel about Jordan.  So many things.  Sadness that he is alone.  Joy because I believe he is never really alone.  Desire to comfort, even if he is not mine to hold.  Love for this little boy, simply because I see Emily and Abby in his face.  Surprisingly, what I don't feel is judgement.  I think of the woman who carried this boy in her body and could not carry him through life.  I hope she carries him in her heart.  I will carry him in mine.  If you think of sweet Jordan, carry him in yours.  Pray for him and the family that I so desperately wish was in that hospital room with him. 

I am so thankful for the opportunity to be here in this one with mine.  I praise God that I did not have to make the choice to walk away from my daughters and for the strength He supplies when I am so weak.  He continues to supply each and every moment according to our needs. 

"And my God will meet all your needs according to the riches of his glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen."  Philippians :19-20 niv