Skip to main content

Day 17 - Joy

 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.

July 29th, 2021



Comments

Post a Comment

Popular posts from this blog

Day 32 - How grief changed me

 I obviously missed quite a few days - I took about 2 weeks off - turns out blogging about heavy stuff is draining and I probably bit off more than I could chew by aiming to do 35 posts.  I have been reflecting on how grief has changed me over the last two years.  In many ways, I am not the same person I was when 2021 began. Grief has changed my thought life, my friendships, my work.  First - My world got tiny. I often felt myself looking inward (at my usually crappy situation) and feeling a lot of pity, sadness, anger and occasional shame. In those seasons, it’s so hard for me to be an engaged friend. Essentially grief has made me selfish. When you are going through so much stuff, you don’t have capacity to extend yourself to be there for your people. There’s nothing wrong with that - that’s the reality of grief: other people are checking on you for a long time - for good reason. But that’s hard for me- I wasn’t built to be needy, to mope or even be able to answer “...
Post a Comment
Read more

Day 19 - Joy in the In Between

That phrase makes me roll my eyes sometimes. Joy in the in between. It feels like a quick way to brush off the troubles you are living amidst and force yourself to just "be happy" instead.  But, I think I am missing some of the sentiment of the phrase when I let my jaded heart get in the way.  When I look back at pictures from the days between Jack's second surgery and when his soul left this earth, I do see joy. I see the faces of my family members who came to see him for the first time. Like my grandparents meeting their first great grandchild. My friends coming to swoon over him even with all of his tubes and unable to hold him. I see photos of us with Jack, holding his hand, enjoying every moment we had with him knowing it was a gift, a miracle.  There was pain and sorrow during those days, of course. But essentially joy in the in between is life. We are living right now in the "not yet." We live among pain and sorrow daily (often not as grave in severity...
Post a Comment
Read more

Day 16 - Surgery day #2

I have already shared that Jack had heart surgery on his fifth day of life, then was unable to come off of ECMO (heart and lung machine) a few days later, then palliative care was offered to us. In the days that followed that we were mostly just waiting. Waiting to see what the doctors were going to decide and do, waiting for Jack’s heart to show any signs of improvement that could mean he would tolerate coming off ECMO. At this point he was still fluid overloaded and making plenty of urine so he was losing fluid everyday, looking more and more like a baby and less like a sumo wrestler.   The surgeons didn’t really have an answer as to why his heart couldn’t pump on its own. They never said the words “we should have done the other surgery” because all of the measurements of his heart told them they should not have done the full blown HLHS surgery. But essentially that’s what we assume should have been done. They discussed Jack’s case in grand rounds at length. They decided to take ...
Post a Comment
Read more