This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.
Can you imagine? A 15 year old Australian teen from Westmeade Children’s Hospital in Sydney has been blessed with something NO OTHER transplant recipient can boast. The liver transplanted into her body has been fully accepted and not just integrated but her own body has changed to accept it. Essentially she […]
This last week we saw the GI specialist and it was less than I’d hoped for. He told me to put her back on dairy because I hadn’t noticed much difference and then to take her off whole grains, cut her food into itty bitty pieces and wait 2-4 weeks to see improvement. He also […]
On Sunday, September 30th the 8th annual Run for Children’s Hospital takes place. This event is held in order to raise money for uncompensated care (of which we have been grateful recipients). The hospital anticipates a need of $43 million this year to cover medical costs for families who lack insurance or whose children require […]
This is obviously an issue close to our heart; without a transplant Zoe was projected to live maybe 3-4 months. April is National Donate Life month. According to UNOS (United Network for Organ Sharing), at this moment there are 96,039 people on a waiting list for various organs. 96,039 families are waiting […]
Immediately after Zoe’s transplant I struggled to find words I will use to explain to her why she cannot be flippant about her responsibilities (the ones I temporarily hold) in taking care of this heart. These were the reasons that flooded my mind:
It is not yours to squander.
It came at a price.
You do not live only for yourself […]
I was on the line with the transplant coordinator when she got paged-she told me there’s a transplant today. Please pray today….one family is saying a final good-bye to their child and another family is scared they may have to but also excited about the possibilities ahead.
I was in the kitchen this morning when I heard Zoe wildly giggling (doesn’t happen that often) so I ran into the living room and told Noah, “do it again; whatever made Zoe laugh, do it again”. First I should explain we have this very large foam wedge from when Zoe was an […]
Adios, au revoir, Sianara February. Good-bye to the shortest yet longest month of the year. Good-bye gloom, snow, wind, rain, sleet and depression that hangs from me. It will get sunnier now. It will get warmer now. I will get to start being outside in my garden. I dream […]
Last night Paul went to test drive vehicles so I was flying solo with the kids at bedtime. I put Noah to bed around 7:45 but Zoe kept waking up and wanting to eat or fuss. I was pretty preoccupied from about 8:00 to 9:00 so although I could hear Noah messing around […]
I’ve thought about how to write this post, but I can’t really think where to start or end. I think the best thing to do is announce the sad reality, and let my emotions drive the bus. Last night, another family in the Cardiac ICU lost their 3 month old baby Alanah in […]