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Madeline is much like any typical four year old.  She loves to play in the water, cut paper into tiny pieces to make "puzzles," hug on Eli, play with her friends, play envelopes with Mimi, use play-doh with Nonna, play with coins with Pop, play "piggy" with Dada, eat cake, delay bedtime, skip a bath, have cookies for breakfast, dance and sing.  She may not have as much energy or act as rambunctious as some of her friends, but for the most part she keeps up just fine.

 

We stop for a quick dose of medicine four times a day and see Dr. Joel for regular check-ups every two or three months.  He keeps a close watch on Madeline's pulmonary pressures in hopes that the therapeutic medicine and new lung tissue growth will result in more relaxed vessels and eventually NORMAL pressure readings!  We pray every day that Madeline would grow out of this pulmonary hypertension.  Since the ballooning procedure in Boston, Madeline's mitral valve has opened a great deal.  It is still somewhat tight and there is some blood flowing backwards, but Dr. Joel thinks it will be a long time before she will need surgery on that valve.  And, who knows, with the fast pace of technological developments, maybe when the time comes the mitral valve could be accessed through a cath or the side of her chest rather than through open heart surgery.  Until then, Madeline takes her medicine like a champ and we all keep praying!

 

 Since that beautiful spring day three years ago, we have felt the gamut of emotions.  A month after Madeline's open heart surgery, she was in heart failure again.  We became so weary and scared with every check up that she would again need some intervention.  But now, what we mostly feel is such hope and confidence that everything is going to be okay.  God has given us amazing strength through overwhelming moments and the doctors and nurses wonderful skill and beautiful compassion. We are so thankful for this and so hopeful for the future.

 

Madeline is quite the determined little girl.  We know she has been given the gift of many second chances, but we also know that her spirit of perseverance has served her well. One day after surgery, our ten month old was still intubated and groggy with sedation, but as doctors surrounded her bed to discuss her progress and care, she lifted her little IV poked arm and waved to them. We knew then that she had some drive and spunk! She talks about wanting to be a ballerina teacher, a mommy and a doctor, and knowing Madeline, she will be able to pull all of that off!