The first 36 redux

Yesterday was a day full of emotions and tears. I was so ready to leave the hospital that when I arrived in the morning, I started packing everything frantically. I couldn’t wait to leave with James and be home with my family in one place.

As we walked out of the hospital with our nurse, I felt tears welling up behind my eyes. We were leaving – going home WITH our son. It was something that we weren’t even sure would happen, and yet it was. We were also leaving behind the skilled nursing care that he had received. Leaving behind the “code” button that would summon a team of experienced nurses and doctors to his assistance. We were leaving and going home to sleep in the same bed together for the first time in 2 weeks. Everything washed over me in a tidal wave of emotion.

The day itself once we arrived home was fairly uneventful. We got everything set up for him and settled down. I felt fairly relaxed and was grateful to be home.

As the day progressed to night though, the exhaustion started to catch up with me. Last night was another excellent example of what happens when I do not sleep. The panic and anxiety started to spiral out of control. Part of it was prompted by James having a desat episode. His oxygen level abruptly dropped to around 70, he became limp and slightly cyanotic. He does this periodically, but the frequency has greatly decreased since his birth. Still, this was the first episode that we’ve dealt with at home. It took about 5-7 minutes for him to come around. Afterwards, everything crashed down onto me.

Our lives are fundamentally changed. Our son has a severe chromosomal disease. It will end his life prematurely, though when, we have no way of knowing. He is always going to be sick and weaker than other children. He will always have special needs. He will always need his mommy and daddy to be vigilant, to take care of him.

I started to wonder if we would ever be able to be a “normal” family again. If we’d ever be able to just pack the kids in the car and go out to dinner, to Mountain Play Lodge, or even to the park. Will I ever be able to go out to dinner with my husband again, go to my book club, or do something normal?

Such simple things that you never think about for one second before something like this happens – you suddenly become incredibly aware of them. Moving your baby from one room to another, for example. This morning, we had to roll his huge oxygen concentrator to the living room, move his feeding pump, and then move him. I couldn’t just pick him up and go to the other room.

And he doesn’t cry. He just sleeps all day. He is so quiet that we could just plug him into his feeding pump and forget him – except for when the pulse ox goes off to warn us that his oxygen level has dropped below 87. I never thought I would wish so fervently for a baby to fuss.

And I am starting to wonder – did we do the wrong thing? Are we doing the wrong thing right now? Is it cruel to sustain him with oxygen prongs in his nose that cause his snot to dry out and become somewhat bloody? Is it wrong to hook him up to a feeding pump that deprives him of the joys of infancy – suckling, snuggling against the breast with his mommy? Tasting the delights of breastmilk? Are we doing this for him or for us?

Right now, it feels like there is a wall between me and everyone else that isn’t dealing with this. The only people that I feel equipped to speak to and see on a regular basis are my family members. Otherwise, I feel a need to isolate. It’s probably unhealthy to do so, but I become enormously fatigued when talking to anyone, even the home health nurses. Further, I just don’t know how to answer the question “how are you doing?” Anything that I say will feel like a lie or an omission of the truth. I just don’t have an answer for that question right now.

And yet, I snuggled with my beautiful boy this afternoon and evening. He curled against me just like every newborn does. He quietly studied my face with his big, dark eyes. He sucked on his pacifier. I love him so much, and I wouldn’t trade him for anything, despite this difficult journey that we must take together, and despite how I know it will end.

One day at a time. One day at a time. One day at a time. This will become my mantra.



3 thoughts on “The first 36 redux

  1. The unknown and this unending battle wears on us. Some of the challenges we dealt with soon became our norm before we even knew it. I questioned whether or not my friends with all their “normals” was actually causing me more grief and served as a constant reminder of what we should have had. The bad days eventually do become less prominent in our memories and I hope the same goes for you and sweet James as well.


  2. This is beautiful. You are chronicling a journey few people travel on, and which is infinitely hard. I hope you are able to find some peace to embrace your situation. You are so strong and you can do this. Warm hugs to you mama.


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