100 days ago I never thought we would still be waiting for a perfect heart. I thought we would be one of the 'lucky' ones that got a heart right after Hope was listed. We are still waiting for the perfect heart and will wait as long as it takes because we hope it will provide her a long and healthy life. We know the sacrifice that needs to be made for Hope to get her perfect heart and are thankful that the donor family has been able to spend one more Easter, Mother's Day, Father's Day, and 4th of July with their little one. Each holiday that passes is a blessing for that family and even though we would like to be home with our whole family, we are also glad that the donor family is getting precious time with their little one.
100 days ago I worried that Hope would spend her days aggravated and mad about being in the hospital so long. Quite the opposite it true...Hope loves it here and has made friends with so many of the nurses, therapists, and volunteers. She always has someone to play with and her doll house is her new toy of choice. She spends most of her day talking someone (usually me) into playing doll house with her. A Special Wish of Cleveland has done so much for Hope and our whole family. They bring her toys, food, and play with her every week. They are the best organization I have ever met and when Hope is feeling better, I plan to get more involved with them and raising money for other families to have the privilege of benefiting from their generosity.
100 days ago I wondered who was going to watch the boys while we waited. We have been so lucky that our families have gone out of their way to help. This summer has been especially difficult and will get even more tricky as my mom starts working full time soon at the Cleveland Fairgrounds. Jerry's mom has been staying at our house every other week and has been wonderful. The boys love having her stay there and Destiny has enjoyed using her car this past week. I love that she has been able to spend time with all the kids and that they aren't driving her totally crazy.
100 days have gone by and we have seen several of our heart friends come and go...several having their Fontan. It has been amazing seeing these little ones thrive and get in and out of here within two weeks with no complications. It was our 'plan' for this summer as well. As disappointed as we are that our plans have changed, we know we are in a great place and we pray every day that the perfect heart comes and we celebrate at home with our whole family.
100 days ago there were two amazing boys waiting for their perfect hearts. They received them within days of each other in April. They are both home and enjoying the summer with their families and friends. We have met other transplant families and have seen their little ones thriving as well. I am amazed at how wonderful these kids are doing with their new hearts and it fills my heart to think that Hope will be one of them.
I try to keep things light and medically Hope is doing good. She is medically stable in heart failure. Her oxygen saturation is around 75-83. She is on .5 mcg of Milrinone and 2 liters of oxygen. She has had one little cold and no infections. She has had a PICC line and NG tube replaced. Otherwise...medically she is doing good. I cannot begin to tell you how lucky we feel that she is doing so well. We have seen so many different situations in the past 100 days and we know that this journey could be so different.
Please continue to keep our family in your thoughts and prayers. We have felt them and appreciate them so much.
