Ezra - 9 Months

Ok seriously, make.it.stop.

Ezra is 9 months old!! Has it really been 9 months since he joined our little family!?

He is:
Wearing 9/12 month clothes
Size 3 diapers (at night), still going strong with the cloth diapers at home
Getting into everything
Pulling up to stand and I've caught him standing without holding on a few times
The proud owner of two bottom teeth and working on a top tooth

Ezra loves to play with Cohen, but doesn't like to be forced into something he doesn't want to do (wrestling, being "pick 'em'd" by Cohen). He crawls all over and loves to play on Cohen's big boy bed and look out the window. We have taken him outside a few times since the weather's been nice and he has loved tromping around behind big brother.

He has recently taking to shrieking and screaming at the top of his lungs. He also has learned to put his arms up when he wants up or to get out of his seat.

He eats (and eats and eats) everything. The only thing we've found that aren't his favorite are scrambled eggs, otherwise it's down the hatch! Except for grass (see picture below)

He still loves to snuggle and is also still nursing. He takes two naps a day, one usually short morning nap and an afternoon nap. Ezra and Cohen are sharing a room (except for naps) and they both sleep great at night for the most part.

Sharing our Story at UW - Remembering Carter

Earlier this week, we made the trip to UW to share our story at a bereavement training for the second time. Last time we had another loss family with us and this time it was just us, which made it a little more nerve wracking.

We told the story of both of our boys and the impact it had made on our lives, basically turning everything we thought we knew upside down and causing us to think differently about everything.

We had amazing NICU nurses and they are like a part of our family, but one thing that I have struggled with is that I never felt comfortable talking about Carter in the NICU. Most of the time, it was like something that was separate and done and that we needed to focus on Cohen. To some degree that is true, but the boys were a part of each other. They were both our boys and Carter's death affected a lot of how I felt about Cohen in the NICU. I always wished I had more of a chance to talk about Carter as well but, with the exception of one nurse, didn't feel like it was ever brought up or okay to talk about.

But today, after we shared our story, we had 2 separate people come up and tell us that they remembered Carter. One was one of the nurses who was there the night the boys were born. For some reason, I never knew who the nurses were in there that night. I asked one of the NICU doctors who was there when they were born to go over some of Carter's records with me and she didn't seem to understand why I wanted to know or what good it would do and I wasn't able to get any of the information that I was seeking. When your child is gone and you have very limited memories, you desperately seek anyone who might have something to share about your child. So after we were finished talking, this nurse came up to us and let us know that she was there with the boys that night. It was just so nice to see the face that had been there with them. She had actually been helping with Cohen, but she was in the same room. It seems like a small thing, but it was like finding a little piece of Carter.

The second person was someone we saw nearly every single day, the NICU secretary who really is an amazing person. She always had a smile for us, always asked us how we were doing and liked to tell us little tidbits about Cohen. With tears in her eyes, she told us she remembers Carter because he was the first baby that had ever died since she had been working in the NICU. When she told us that she always fought to keep Cohen as "Baby A" (Twins are given Baby A and Baby B, instead of just baby boy) on his charts and documents and was protective of that, it made me smile.

These two little stories just made my heart a little bit happy. To know that Carter was remembered and to be able to find little pieces of his memory out there in the world.

Sharing Our Story

Many of you have been asking how our trip to UW went, and I guess it went well? As well as something like that can go? I always think that I will be able to pull myself together, I've talked about many of these things before. But it's different to sit in front of a group of people and tell the story of something so truly devastating. Something that still affects our every day lives. Something that most people don't understand and only happens to other people.

It's different to tell our story to a group of people who have willingly come to learn about grief and the way it affects people. The difference is that these are the people who care and who want to know how to help. They make us feel validated by audibly gasping when I admit that someone told us to our faces that they were going to put our baby in a refrigerator because they know how heartless it is. They are the ones who wipe our tears and hand us boxes of kleenexes. I think that's what makes it harder and easier at the same time.

A lot of times when I tell our story to other people, they may or may not want to hear it. It might get awkward and the conversation might end abruptly. But this crowd is special. The faces that fill the room are ones we recognize. And even if we don't know them directly, we know their kind. We know that they are compassionate and take care of our babies in moments that we aren't able to. They are the faces who dress up our babies when we are gone and make signs for their rooms. These are the people that cheer on our babies, that help us process good and bad news, and who we share our lives with. We have nothing but the greatest appreciation for the NICU staff and the amazing and difficult things that they do every day.

I have a lot of other things I want to share, but am still processing. Both times, this has been a hard and rewarding process. It always takes me a few days to recover from talking about our boys and everything we have been through. It's one thing to think about Carter, which I do everyday. It's another thing to have to put into words and try to help other people understand what it's like. It's scary, emotional, and puts us in a very vulnerable spot. We came home last night exhausted. I went to bed early with a headache. It really does take it out of me for a few days, I know it's worth it, and we will probably share again at another workshop. Thank you for all your support and prayers, we truly appreciate them!

Spring, Is That You?

Well, last week we were bundling up in snowsuits, mittens and hats and tromping through the snow. This week, Cohen was out in the yard sans clothes (per his request).

I don't realize how much the winter weather affects me until I see the sun. We are so very excited for playing outside, trips to the park, rolling in the dirt, and being warm. 

I can already tell these two are going to have a blast this summer. Bring it on!

Making Strides

While at his every other week OT session, Cohen voluntarily got in a swing (unstable), played with toys (no walls), and spun around and around and then asked to do it again! This absolutely would not have happened a few months ago. I was one proud mom. 

Cohen has been going to his OT since he was 10 months old. We noticed fairly early on that he had some behaviors that were just a little different. He always had his arms straight out to the side, didn't sit up, and couldn't focus on anything near him. We often described it as always being "out". He didn't know he had feet, didn't bring his hands together, and was always looking at things that were far away and not focusing on toys etc close to him. Within a few meetings, he was learning new things and making lots of changes. 

As he grew we continued to notice that he had trouble focusing, had poor balance, was clumsy and very sensitive to certain sounds. We attributed it to a poor vestibular system and hoped he would continue to grow out of it. He has come a long, long ways. Awhile back we moved to once a month OT sessions but over the last several months we have been going every other week and it seems to be making a difference. A few months ago he refused to get in any type of swing (other than one of those baby swingset swings) and if we could get him in he would only go in for a few seconds and whimpered and clung onto Susan the whole time. Now he voluntarily climbs in and actually enjoys it! He can (usually) go down stairs well, has been climbing furniture, he even attempted to jump! Seemingly little things, but big things for a little boy who has struggled with physical tasks and balance/planning issues.

I've read some interesting articles and heard from other preemie parents whose children struggle with ADD/ADHD and anxiety. They seem to go together and they seem to be quite common in the preemie population. It makes total sense, it really does. The combination of being born too early before their neurological systems are finished developing, being put in an environment that is anything but soothing and filled with alarms, noise, lights and painful procedures, you can see why a baby/child would struggle with this. Obviously Cohen is too young to be diagnosed with anything like this, but I have been seeing a lot of this in Cohen and as you know, I struggle to know how to help him. It's hard to have the kid who plays alone in a back room or hides in the closet at a playdate. But, it's nice to know that we aren't alone. I struggle with knowing what is a result of being a preemie, what is sensory, and what is just his personality. It's a strange, difficult combination of things to figure out.

He has overcome so, so much and we are just so proud of him. I love seeing his confidence grow as he finds he is able to do more things. He is an amazing little fellow who continually keeps us laughing and on our toes. He has grown leaps and bounds and come a long way and we know he will keep meeting life's challenges with a strong spirit and determination. 

Waiting for Spring

We are most certainly ready for spring around here! We've had snow/ice the last two weekends in a row. Friends kept asking if Cohen had fun playing in the snow. That would be a no since it was freezing, and windy, and drifting. We did go out when it very first started and make a little snow man with Cohen and he thought that was awesome.

                         

But after it stopped snowing and the sun came out a few days later, he did. I sent him out with a spoon from the kitchen and a bucket and he had fun digging and moving the snow. We didn't take Ezra out since it was so cold, but he got to get some fresh air and watch big brother from the window.

It's also been pouring down rain so Cohen has been making good use of his rainsuit.

Come onnnnnnnnnnnn spring and sun!!!

Parenting Struggles

Its been a rough couple weeks over here. We've been dealing with some "life" stuff, some kid stuff, and some parenting stuff.

I struggle with knowing how to best parent my children. Advice and just do this or just do thats are everywhere. I struggle with knowing what my busy toddler needs. Where he needs me to be strong and consistent and where he needs me just to let it go.

 I struggle with knowing the difference between normal toddler behavior, sensory issues, and the results of being a micropreemie and being in the NICU. I will always carry the guilt of his early birth, the lack of a "normal" infancy, and the problems that have come from his premature birth. Of not being held and cuddled. Of my touch being too much for him to handle. Of not having a breastfeeding relationship. Being surrounded by noise and light and pain. Of losing his twin.

I struggle with knowing what is just "Cohen" being Cohen and what is something I need to look into a little deeper. He is kind and deeply emotional. Sensitive and loving. He's faced more in 2.5 years than some people will go through in a lifetime.

I struggle with doing too little or too much. Of giving him excuses and realizing that some are legitimate. Of pushing him to do his best and letting him just be a little kid that doesn't want to do something. I waffle between worrying about spoiling him and thinking who care if he's a little spoiled!? Before I was a parent, I knew my kids would be well behaved. They would never "get away with" certain things. I would be an amazing parent and have amazing kids. And well, when you actually have kids, you realize it's a little more complicated than that.

I do have amazing kids and I am incredibly proud of them. I want to be the best mom I can be and I think part of that will come when I can be confident in the decisions I am making as a mom. I have a big, big love for my babies and I know that somehow we will get through all of this. I don't think I will ever regret loving my kids as much as possible and parenting them in a way that they never doubt my love for them and that they know that I love them as they are.