Sitting in a hospital is a bit of a time warp. The hours pass slowly some days and other days they fly by. We had a lot of visitors which passed time quickly but only one could come in at a time (COVID rules) and one of us had to leave because only two people could be at the bedside at a time. The rules had actually loosened up about 3 weeks before Jack was born and they tightened back up again at the end of August. The timing was a sweet gift from God.
After Jack’s second surgery we did a lot of sitting and waiting. We waited to see if his kidneys would start working again. We waited as the dialysis machine slowly pulled excess fluid out of his body. We waited to see if his heart function would improve after they repaired his arch again.
It is an agonizing type of waiting. We were helpless to change the situation. We waited for miracles. We searched for any tiny sign of improvement each day.
We eventually were told that Jack’s heart may not ever pump on its own and that his only shot at life may be a heart transplant. We talked with multiple transplant team members, we signed papers and confirmed insurance information. We were told he would be high on the list because of how sick he was however hearts are extremely rare and his non functioning kidneys would disqualify him if one became available to him.
More waiting. Just waiting to see if he would turn a corner. To start making improvements.
You know the saying “find joy in the in between” - well that makes me want to gag when I think of that phrase in relation to what we were waiting on. We had no joy. Yes we could smile on some of those days. But we were sitting in deep despair and anxiety watching our baby suffer and fight for his life for weeks and not being promised a happy ending. We struggled to find an ounce of hope some days. Joy felt out of the question. We saw sweet mercies from God (like the Covid restrictions timing) but a healing miracle never came.
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