To those affected by a heart defect:

Runaway Baby

March 1, 2007 at 5:11 pm by Mom & Dad

As we walked down the long hall to Haven’s room this morning, we noticed something different.  You see, Haven’s room is directly at the end of the hall, so you can see right into it as you are walking down the hallway.  The first thing we noticed was a green piece of paper hanging on the wall outside her room.  There appeared to be writing on it, but we could not read it from that distance.  The next thing we noticed was that all of Haven’s books and things that were on the counter by the window were gone.  Then we were close enough to see that not only were all our belongings no longer in the room, but Haven was gone, too — bed and all! 

“Surely, they would have called us if things got THIS bad,” we said to ourselves.  “Maybe she set a world record for recovery after a multi-procedural surgery and they moved her to the Heart Center.  Perhaps she had such a good night that they Fed-Exed her and all of her belongings back home early this morning and she’s sitting inside a box on the front porch of our house….”

By this time, we had picked up our pace and little and were close enough to read the sign on the door:  Haven Johnson has moved next door.  Well, at least it wasn’t as bad as we thought (not as good, either).  They needed to do some electrical work in Haven’s old room, and the room next door was recently vacated, so they moved her over.  It is a bit more private and not nearly as noisy as being right next to that automatic door.  Besides, we have a policy that we prefer to not stay in the same room for more than six weeks.  Need to shake things up every now and again. 

Haven enjoys the new room as well.  She has been sleeping all day.  When we first saw her this morning, we found that she had grown even more puffy over night (still not AS puffy as she has been).  She has been very steady all day, and they have even been able to come down a little bit on the ventilator settings (she’s now just below where she was before she went into surgery on Tuesday).  Since both nostrils are now available for breathing and since the chest tube drainage is down quite a bit (on the one side, anyway), they will be attempting to wean her off the ventilator over the next five or six days.  Hopefully, as she starts to wake up more she will be able to move her extra fluid out of her body.  They plan to start feeding once we get that under control.  We’re extremely thankful that she has been so stable even though she was put through quite a lot over the last couple of days.     

Posted in Recovery #1 | 1 Comment »

One Response

  1. G.G. Uncle Virgil 'n Bonnie Groff Says:

    Good Morning, It’s a snowy, blowy, icey day here in Michigan. But it sounds like you three are all cozy in Haven’s new room. Glad you like it better. Now she’s on her way making some new progress and every time she’s had to do that she seems to do a good job. Jesus loves your little family of three. Love, Bonnie ‘n Virgil

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This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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