The questions and the guilt. Boy are they both heavy. I am for the most part better about both of those things. But I do want people to know that they aren't alone and are normal for feeling both of those. When Grace was first born, wow were there immediately questions and immediately guilt. "How is it possible that she has what you say? I had ultrasounds and was told she was healthy" "What did I do to cause it" etc etc. The first day we were at U of M, one of her surgeons told us that we needed to know that nothing anyone did caused this and for a moment it helped the guilt but then it just came back. Guilt over EVERYTHING. I'm not kidding. I had someone tell me how silly I was basically for my guilt. Guilt over the amount of coffee or pop I drank while pregnant with her, guilt over how much stress I had or how many moves we made where I HELPED move things. Guilt over not simply saying "I have this out of left field fear that something is wrong with my baby, can we check one more time?" Guilt over not delivering at a hospital with a NICU, because then maybe she would have been intubated sooner and she wouldn't have worked so hard to try to breathe. It just goes on and on. Then came the guilt regarding my sons. Guilt that I truly was not there for them, even if I was home, my focus was not them sadly. I couldn't, as hard as I tried be what they needed. My husband was awesome, when he was home, he took them to the pool, to the park to play, etc. When I was home I was constantly hooked to my pump or doing laundry or learning about CDH, or calling the hospital etc etc. And boy did I feel guilty. Guilty when I was with Grace at the hospital and not with them. I had great nurses tell me not to be, and it helped for a moment and then the guilt came back.
The constant questions too about why in the world she didn't make it. Why did she live for 4.5 mos only to die? Why did I leave her the last night I did? Why when my husband texted me the night before she died and asked if I thought he should stay since she wasn't going to sleep or leave since it was getting late, did I tell him I was sure she'd be fine if he wanted to head home? Why didn't I tell him to just stay till she fell asleep? Why do some babies with even worse odds than her make it and she didn't? Why couldn't they get her PPHN to ever get any better than it had? Why wasn't anyone at all concerened with her completely unchanged ECHO's from the time she came off ECMO until she died?
These are all true questions and guilt that I have felt over the last 10 months and they are all normal and ok. The hardest part of them though, is knowing that there is nothing to be guilty over. Nothing at all. Things happen and what happened to Grace was totally out of my control, the plan for her life was the same whether or not I drank coffee during my pregnancy. The plan was the same whether or not we knew she had CDH. It was never my plan and I do know that. If at any point I had done something intentionally to hurt her, then there should be guilt but I did not.
The questions, well they aren't for me to have answered. I have for the most part totally accepted that I really may never understand any of it, and that's ok. I'm not meant to.
So, don't beat yourself up with the guilt and the why's. They truly help noone!
Moving on to a different subject, please check back in a few days, I have an exciting opportunity to remember my beautiful girl for her birthday next month for anyone who wants to help other CDH families! Details to follow!