The guilt

Yes, I know I’m not supposed to do this. I know that the what-ifs can consume you and that they are not productive. But it’s so hard, if not impossible not to think about them. If love alone could have saved my babies they’d be in my arms today for sure. I loved them. I love them. And I just can’t stop thinking about every little thing I did or didn’t do that might have made a difference. Maybe it wouldn’t have saved them, but maybe it would have changed something? Made them a little bit comfier or… “happier”? I don’t know. I’m not one of those people who can say “I have no regrets”. I have tons of regrets, large and small, from all along the way. Things I wish I hadn’t (or had) done or said. Maybe writing some of them down will help me exercise them. Stop the endless movie playing in my head.

Let’s step back a sec. My mom. One of the things I heard my mom say to someone in the few weeks before she died was how she made a promise to herself when my grandfather died (more than 40 years ago) that she would never let my grandma spend Christmas alone, and she never had. Gulp. My mom spent last Christmas alone. She had been planning to come to CT to spend it with us, but at the very last minute she backed out. The radiation had given her an esophogeal ulcer and she couldn’t eat. She had a feeding tube, and had to give herself nutrition through that. She had shipped a case of the nutrition to us because it was too heavy to carry. But she was concerned about weather and getting stuck in Detroit on her layover (has happened more than once to us on winter trips to Duluth) and what she’d do if she couldn’t eat. Plus she had just gotten over pneumonia and was was worried about all the germ exposure travelling would entail. Made sense. She cancelled. I looked into booking a flight for us, but by that time, all the tickets I could find were like $1000 each. I decided that we’d come out later when tickets were more reasonable. Which we did. But now I feel terrible knowing how important that was to her. She never said anything to me though. And I console myself with the fact that I spent 2 months with her before she died. She didn’t die alone. But still… I carry this with me.

The pregnancy. I have wondered if we should have even tempted fate. Everyone knows how dearly we love Annika. We have marvelled at how smart, pretty, well-adjusted (we think) she is. We have always felt blessed with her. I think I’ve thought about that every day since she was born, and probably expressed as much to many of you. I’d be lying if I said I’d never wondered if we were just asking for trouble to try for that again.

And then of course…did I do something during this pregnancy to cause this? I’d had such an easy, perfect pregnancy with Annika. Even though this one was much more uncomfortable and difficult right from the start, I pretty much went about life never really believing something could really go wrong. I was careful, yes. And when the doctors told me to stop going to work and rest, I did. But did I rest enough? I didn’t lay flat on my back 24/7 (for the record, nobody told me to). Was the activity I did too much? Somebody (my perinatologist, I think) told me that with pre-eclampsia, and particularly with HELLP Syndrome, that I had, they don’t actually have conclusive evidence that bedrest even helps. It’s just that they don’t know what else they can do. But maybe they just say that because what’s done is done, and it doesn’t help matters to feel guilty about what already happened. Especially when you have babes in the NICU to focus on. I don’t know. But how can you not ask yourself what you could have done to prevent something like this?

With Cole. In the early days I spent most of my time next to Lina. Partly it was logistics. Lina was in a corner, and there were chairs that sat over by her isolette. Plus she was so very tiny, and just seemed like she needed more attention. Cole’s bed was sort of in the middle of their “pod”. I wasn’t that strong, and usually needed to sit after a little while. I could have taken chairs over to Cole of course, and I did sometimes, but I just spent more time with Lina. Until he got sick. Really sick. I know that sitting next to him more wouldn’t have changed his outcome, but would he have felt more “loved”?

I regret each and every day I didn’t go to the NICU. There weren’t that many, but there were times I didn’t go because… I had other errands to run or I didn’t feel well. Especially with Lina, she was getting better and thought we had forever. I know they were getting the best care, and my being there wouldn’t have changed that. But would an extra touch have made them feel better? Would I have made one extra memory to carry with me? Those are all I have now.

It’s eating me up

The night before Lina got sick, I didn’t go to the hospital. It was Tuesday, January 8th. It was her due date. I had gone back to work the day before. That morning I went to the NICU, because I wanted to meet the doctor. Greenwich has 2 doctors who alternate weeks being “on”. I had met the other one the previous Friday when Lina got up there and over the weekend, and I wanted to touch base with the 2nd one.

I went in. I can’t even remember how long I stayed. I can’t remember if I held her that morning or if I just watched her and then spoke with the doc. The doctor and I had a long conversation. I asked him all my questions. The same ones that I’d asked the other doctor, and the same ones I’d asked before we left NY Presbyterian. It helped to keep hearing the answers over and over.

The doctor told me how well he thought she was doing. She was making such good progress, he thought she might even be ready to go home the next week, in the best case scenario. Well, I wasn’t so sure I was ready for that, but it was great news. One of the questions I asked him was that since she’d had the bout of NEC, whether there were complications we might have in the future. He said it was unlikely. Since she hadn’t needed surgery and seemed to be doing fine now, he didn’t think we’d have any issues (though of course he added the disclaimer that you can never be sure).

So I went to work feeling great. I told everyone how well she was doing. I was probably beaming. I had been planning to go over for her 9:00 feeding. But I was feeling really tired. I thought I might feel a tiny itch in my eyes and nose, and I thought the LAST thing I needed was to get run down and get sick, especially if she really was going to come home as soon as they thought she might. I’d just gotten over a cough I’d had for over a month (bronchitis and I don’t know what else), so I thought I’d play it safe. I called the nurse and told her I wasn’t coming in that night, but I would come in for her 9:00 am feeding and go to work late.

Well, that never happened because we got the call at 6:30 am the following morning. I rushed over, and she looked SO different. Just 24 hours earlier, she was a perfect, sweet little baby and now here she was, her belly HUGE, lying naked under the warmer on a ventilator. She looked so week and uncomfortable.

I keep reliving those moments. Why didn’t I go in that night? Would I have noticed something about her that might have hastened the diagnosis and treatment? Actually, I doubt it. I might have just said “oh, that’s just Lina’s belly”. And that early, it might not have even been noticeable. But the nurses did say she was irritable. At least I would have seen her before she got so, so sick.

I just can’t believe I wasn’t there.