Posts Tagged 'NICU'

How many kids do you have?

Today when I picked Annika up from school it was storytime. She said she wanted to listen to the story before we went home, so I took a seat in the back row and waited. Midway through, the boy sitting next to her turned and asked

“Do you have a baby?” (baby-aby-aby-aby went the echo in my head)

Ouch. That’s a tough one. In the second or two it took me to respond, a million things went through my mind. Then, considering the fella is 3 and is probably looking for a simple answer, I responded

“No”.

He turned and looked quizzically at Annika.

“She died. And my brother too.”

And then it was over. Exhale. Inhale. Exhale.

Since Cole died, I’ve given a fair amount of thought to how I would answer the question “How many kids do you have?” I guess the answer will depend on the circumstances. My mood, who’s asking, the context. Easy enough to say, but whether or not I hyperventilate or pass out when actually asked remains to be seen. Fortunately I have not been faced with that question. Well, until today, sort of, by a 3 year old. I didn’t pass out.

Today was my first day back to work. It was harder than I thought it was going to be. And I thought it was going to be hard. The first few times anyone talked to me, I cried (I didn’t think I would). I tried to hide in my cube the rest of the day. And then I did something that probably wasn’t so smart (if the goal was not crying). I called Mary. Our nurse. What can I say? I wanted to talk to her. I had tried calling yesterday, but she was off. I had time to kill at work because my ID/password are broken, so I called again. She was there. And she said all the right things. Including “you’ll always be the mom of three children”. Thank you. It was so good to talk to her. It really was. Maybe not so good for my image at work. Sniffle. (Actually, it was OK. Only a few very nice people were within earshot. And I’m not that easily embarrassed anyhow).

And a related question: am I still a mom of twins? My heart says yes, but I will never have those twin experiences. So can I relate to twin moms? Can they relate to me? While I was on bedrest, about a week before the babies were born, I joined the local Moms of Multiples (MOMs) club. I signed up for a playdate group for Annika, eager to meet other MOMs and get some pointers before the little ones arrived. I signed up for the Halloween party. After they were born, and especially after Cole died, I was afraid to reach out to them. A babysteps (online community I belong to) friend from TX actually contacted them for me and an amazing woman reached out to me. She wrote the most heartfelt, comforting e-mails. She brought me a huge stack of books. She brought me a gorgeous plant – cyclamen – which I killed (sorry, Leah). She put me in touch with another incredible MOM, who’d just lost one of her daughters a few months earlier. When Lina died, the MOMs really came out to support me. They sent me e-mail and cards, posted words of support on the bulletin board, and organized meals. At first I felt strange…accepting meals, help from “strangers”. But I can’t describe the way my heart felt when we came home on the night Lina died to find a box of hearty food on our doorstep.

Anyhow, what I’m trying to say, is that the MOMs are an amazing group. They are so generous, sympathetic and supportive. But when it comes time next September to pay my dues… do I do it? Do I still “belong”? When Lina was still alive, I felt…yes. My child is still a twin. And sure, I still have twins. But without the experiences…do I belong?

On the MOMs site, there is a “roster” with names and addresses, spouses names and a smiley face for each child with their ages, calculated automatically from their dates of birth. I have 3 smiley faces. One says “3 years” and two say “4 months”. But Lina and Cole are not 4 months old. They are 23 days old and 3 months 1 week old. They will always be those ages. Forever.

A plug for my favorite water (hint)

hint waterI just got an ice-cold bottle out of the fridge and felt like I need to share this with the world (well, with my little world anyhow). I do not work for this company. I just like love their water.

I have been searching for this product for a long time. I like to drink water, plain water, but sometimes I need a little ooomph. Y’know? I like the flavored seltzers, but I don’t always want the carbonation. “Flavored” waters always seem to mean flavored with sugar (or fake sugar). “WHY, OH WHY can’t they make an UNcarbonated, UNsweetened water?”, I’d lament.

Well, they do. I found it at the cafe of the NICU’s hospital. It’s perfect. It comes in flavors like Pomegranite-Tangerine (my favorite), Mango-Grapefruit, Peppermint, Cucumber. They sell it at Whole Foods Market (though not the one right by my house, grrrr…) or you can order a case directly from the company with free shipping!

I really don’t work for them.  But I would if I could. Yum.

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.

maviboncuk.jpgThe 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.

The Happiest Place on Earth

We’re going to Disney World. We decided that after the grueling year we’ve just been through (without a vacation) we needed some time to get away and heal as a family. We leave tomorrow. I’m really looking forward to a little “magic”. I hope they have a magical forgetting potion. Seriously though, I think it will be good for us.

Annika is really (REALLY) excited. She can’t wait to meet Cinderella, Sleeping Beauty and all the princesses. I’m glad that we’re going to be able to do something really special for her. All year she’s heard way too much of “sit still, be quiet, be good” and so on. She’s 3 for god’s sake. We’ve expected a lot of her and she’s been a real trooper. Yes she has her moments, but she’s been so good for the most part.

The weekend was crazy. She had two birthday parties. I’d also given away most of her summer clothes from last year, so I had to run around to buy her a mini-wardrobe. I was very efficient, if I do say so myself. She has some very cute new dresses. Shopping is hard though. After Cole died, I had the hardest time going into baby clothing stores. I’d have to look away from the little boys section. More than once I practically hyperventilated. Now I can’t look at either side. I have to plow through infants to get to the toddler section. Yesterday in Carters there was a really cute little blue fleece outfit on a sale rack. It was all I could do not to buy it. Then I felt sick to my stomach. I managed to hold it together while paying for Annika’s dresses, then stumbled out the door in tears. Sigh.

The nurses from Greenwich NICU called today. I talked with Debbie and Rikki who took care of Lina while she was there. I was so glad they called. Neither of them were there when I stopped by the other day. I got to thank Rikki for helping me nurse her the one time. That is one of the most special memories I have.

Well, I better get some sleep. We’re flying early to the Magic Kingdom.


About Me

I'm a grieving mom. I have one beautiful daughter, Annika, who's 3 years old now (born 12/28/04). I also had twins, Lina and Cole, on 10/04/07, born at just 26 weeks. We lost Cole after just 23 days due to complications related to his prematurity. Fiesty little Lina overcame so much and just when she was getting ready to come home with us, suddenly had a complication unrelated to her prematurity and passed away on January 11, 2008. This blog is about getting through it. More...