One Month and 10 Days

Hope has now been at The Cleveland Clinic Children's Hospital for one month.  I reflect on this so much because prior to this admission, it had been years since she has spent any time in the hospital.  I think I took her health for granted because she had such an easy time and has done so well for so long.  I never would have thought it was possible for her to be in heart failure and needing a new heart at four years old.  We have always been told it was possible, but I always imagined it in the far future.

Hope is currently listed as a status 1A on the transplant list.  She has been on the list for 10 days and counting.  I have heard of people getting their new hearts in hours, days, weeks, months, and even over a year.  We really don't have any idea when the perfect heart will arrive, but we do know it will be bittersweet.  We have thought about the family that will be giving Hope a future...a family that will be living a nightmare that we are praying to avoid.  I cannot describe how thankful we are that a family, while going through a grief that is unimaginable, has selflessly donated their child's heart to live on in our daughter.  It is the kindest gift a person could ever give to someone else.

Our days are filled with games, stickers, painting, music, and lots of fun activities.  It is also filled with blood draws, stethoscopes, bandage changes, lead changes, blood pressure checks, medicine, and NG feeding.  It is filled with smiles, laughs, giggles, playing, and lots of love.  It is also filled with cries, de-sats, and rest.  The days pass...sometimes fast and sometimes slow.  They pass with prayers filled with blessings for the times we have spent as a family and the hope for many more times together as a family...at home with a new heart and a new journey.  It is scary and emotional and we rely on each other and our family and friends to help us through.

Please keep Hope in your thoughts and prayers and keep the family that will donate their child's heart in your prayers as well.  That family is not aware of what the future holds and I pray that they are spending their days enjoying their little one.