As of Tuesday, March 18th, 2014
Lily Grace has officially been
listed for a new heart.
This is a decision that Jacques and I did not take lightly, especially after being turned down by three transplant centers already. We have been warned that Lily's case is very complex, and nothing will be straightforward or easy to predict. If Lily does receives a heart, she will be transplanted to her single left lung. Lily's clotting disorder and multiple blood clots in her body increase the likelihood that her recovery may be very difficult or that she may not even survive. It is so hard to not get caught up in statistics or the numerous "what ifs" as we embark upon this new journey.
Jacques and I are also painfully aware of the fact that in order for Lily to get a new heart, another child must die. Just ten months ago, we sat together in a hospital room holding our deceased daughter, Addy Hope, in our arms. It takes but only a simple thought for those horrible emotions to flood back into my mind. Our prayers are already focused on this precious child's brave parents who will make the decision to turn a tragedy into something beautiful...life.
Lily has been so very fragile over this past year and a half. Since October her Protein Losing Enteropathy, and the steroids used to treat it, have been killing her. Medically speaking, there is nothing left for them to do to help Lily. If she continues down the path she is currently on, the PLE will eventually cause her lungs and pleural cavity to fill with fluid and she will drown to death. When the Heart Transplant Team came to ask for our permission last Wednesday to bring Lily before the selection committee again, we said yes.
We are terrified. We are anxious. We are hopeful.
When presented with our two options for Lily,
Jacques and I chose the option
that offered hope.
If we have learned anything in our lives so far,
it is that you must always choose hope.
Hope always wins.
May the God of hope
fill you with all joy and peace in believing,
so that by the power of the Holy Spirit
you may abound in hope.