Thursday, November 28, 2013

Thanksgiving 2013

We had a wonderful Thanksgiving and we hope you all did too! It was a nice, relaxed morning with both boys sleeping in until 8 am and chocolate chip scones for breakfast. I have another sinus infection (boo) so I headed in to pick up my antibiotics and while at Rite Aid I noticed people scurrying around with their carts and ads. I picked up an ad to see what the fuss was about and ending up doing some shopping and getting some really good deals!  (WAY picture overload ahead!)

Ezra took a nice long morning nap in preparation for an afternoon with his relatives. When Ez woke up, we packed up the car and headed over to my parents.

My contributions to the Thanksgiving meal were chocolate chip cookie dough fudge and ravioli appetizers, they both turned out well!

The boys settled right into the living room for football. The ladies gathered around the dining room table and worked on a few diapers (of course). I put Cohen down for a nap right away before his cousins got there and things got too exciting to sleep.

The boys took a break from watching football to go outside and throw the football around to burn off some appetizers and make room for dinner. The kids loved it. Cohen was laughing and running around thinking he was part of all the big kid action. It was pretty cute. Have I mentioned our family is slightly boy heavy?


Then it was dinner time. The best part. The food was excellent, we were all filled to the brim, and I regretted not bringing sweatpants for after dinner. When Ezra woke up he decided he was hungry and ate blended up sweet potatoes! He decided those were so good that he wanted mashed bananas for dessert. He's a Kimmel for sure!

After dinner the kids wanted to go out and watch the sun set. My mom got a balloon for Carter so we took it outside for the kids to let go. Cohen loved to watch the balloon and kept wanting to "get it".

And now....CHRISTMAS!

Tuesday, November 26, 2013

Happy Thanksgiving!

I can't believe Thanksgiving is here and Christmas is around the corner. The holidays are a bittersweet time, but I think I am starting to find more of the joy of the season. We have so much to be thankful for this year. Cohen's continued health, our "boring" pregnancy and our sweet Ezra. We don't have a lot, but we have enough and God has truly blessed us with jobs, a warm home, and a loving family.

Happy Thanksgiving from our family to yours! We hope you get to spend some relaxing, quality time with your loved ones.

My 3 Boys

Carter has been finding me in his own little ways lately. I think he knows how hard this holiday season can be on his mom and how much I miss him.

Today at work I was prepping a patient for a procedure. I could tell she was nervous so I was making small talk with her. She asked me if I had any kids and I told her I had a 2 year old and a 5 month old. I've talked before about my thoughts on when and where I share our story. Generally, work is not a place where I discuss the details of my life, unless I feel it's a situation that could help someone else. I need to be able to be a professional at work and sobbing over someone's IV isn't generally ideal.

Anyway, I told her Cohen and Ezra's ages and she said "Oh you have twins?". I again repeated that I had a 2 year old and a 5 month old and then she said "So you have three kids?". So then I told her that I did in fact have three boys, that one lived in heaven and the other two were busy little boys that kept us very busy.

I just thought it was odd that twice I only told her about two of my boys and she first asked if I had twins and then asked if I had three children. It's like she just knew somehow. It made my heart happy to tell someone about all three of my boys.

Sunday, November 24, 2013

Ezra - 5 Months Old

To My Ezzy boy,

You are 5 months old, where has the time gone!? I remember saying that with each passing week and month with Cohen, and it's just the same with you. Now that we've gotten your tummy and sleeping issues mostly figured out, you are the happiest baby. I love waking up to get you in the morning and seeing you greet me with a big smile.

You certainly are our rainbow baby, our sunshine after the storm. You have brought so much healing and joy to my mommy heart. I was scared to love you, but there was no way that I could stop myself. You are the sweetest little boy and I love every moment with you, even if your fingers do get tangled in my hair and it feels like you are pulling it all out.

You love your daddy  and always have big smiles for him too. You love to sit in his computer chair with him and look up football statistics. You are getting on all fours, and sometimes on your hands and toes. You are doing some scooting although mostly backwards. Every once in awhile you take a nose dive forward.

You are drinking big boy bottles now, about 6 oz at a time, and you had your first little taste of rice cereal this week. You always think you are starving and your doctor thinks you tend to overeat but I think your rolls are adorable. I've dreamed of having a pudgy baby. I could (and sometimes do) kiss your squishy little cheeks all day.

Your sleeping habits have been changing a bit and you've decided that you don't need to nap. You also insist on being rocked to sleep if we are serious about you sleeping. You know what though? I don't mind. My heart breaks that there are babies out there that don't have mommies to rock them, and mommies out there that don't have babies to rock. So even if it takes a little longer or people think we are spoiling you, if you need to me to rock you, I will rock you. I will never regret snuggling you a little longer or letting you fall asleep in my arms because I know these times will be gone before I know it.

Love you lots little Ez,

{First rice cereal}

Friday, November 22, 2013

Fess Up Friday

I didn't believe Cohen when he said "pee on mommy". I won't make that mistake again.

Sometimes I get dressed in the kitchen and then I throw my pajamas in the dryer so I don't have to take them all the way to the bedroom and risk waking Ezra up.

I stay up way too late at night only because it's quiet.

This week, I heard myself say "Give mommy the hairball"

My baby is 5 months old and it took everything in me not to cry when I realized it.

Tuesday, November 19, 2013

UW NICU Bereavement Training

You know how sometimes you find yourself in a situation and then wonder how you wound up there? That's exactly how I felt as I sat in the back of the training getting ready to go up to the front to share. The group was on a break and we were encouraged to go and take our seats up in the front. For some reason I just couldn't really get myself to move. My mind was racing and I wondered why on earth I had agreed to this.

I was clutching Carter's little box in my hands. The box that usually held almost everything that belonged to him. We were encouraged to bring something to share if we wanted. I had been pacing around the house earlier that morning, packing and unpacking the box. I felt sick about bringing it. Eventually, bawling, I told Danny that I would bring the box itself, but not the contents. They were just too special and I couldn't stop thinking about what if they got lost? What if we got in a car accident and they were ruined? What if I somehow forgot them there? When you have so very few things from someone so precious, you guard them with your life. Once I took all of his things out and packed the empty box, I felt a huge weight off my shoulders. I wanted to bring the box because I wanted to show the staff how very little I had of my son. That everything that had once touched him or had meaning for me fit in that small box the hospital had given me. Someone commented on the ID sticker that the hospital had put on it, similar to the ones on a hospital bracelet. I can't bring myself to take it off.

Once I finished pacing the house, we packed up the boys and put them in the car. We dropped off the boys at my sister's and started the familiar drive. It's a two hour drive each way, but it just seems normal almost because we have made it so many times. As we drove we talked about what we might say. We chatted about whether we had anything to say that might make a difference in someone else's life. I thought about the things that were done and said that never fail to make someone's jaw drop open and how I never wanted another grieving parent to hear them. I thought about the chances we wished we would have had and the moments that we will never get back.

The training originally had been scheduled to be in the conference room in the NICU, but with over 30 people attending, they had to move it to another location. That location happened to be on the exact same street that "the home" was on. "The home" was our dorm-room-turned-"hotel"-room that we lived in for over 4 months along with other families who were patients at UW or had family members who were patients. We both noticed the fancy new awning the building had gotten. We looked up to the window of the room that had been our home for 100+ days. Our room that I didn't even know the number of when I locked myself out without a key card. The room with it's single beds with rock hard mattresses and built in desks from it's days as a dorm room. We stayed in the same room for the whole time, which turned out to be lucky for us as sometimes people had to change rooms depending on what was available and who needed which room.

We were a little early so we payed for parking and wandered around the block talking about the thai restaurant we had eaten at that was no longer there. Finally we went into the building and made our way up to the very top. It was an amazing view of the city! We wandered in to find some familiar faces, nurses and other NICU staff who had taken care of Cohen.

And then it was our turn. We sat with another family and shared our stories. Of loss and pain and hope and healing. There were lots of tears on my part. I can't say enough how very thankful and encouraged I am that this program has been set up. I think often there is not enough done for loss families, whether it's due to lack of training for staff, or just not enough resources to be able to provide keepsakes and mementos. It touched my heart to see a good number of staff there at the optional training. I felt validated as I looked out and saw tears in so many eyes as we shared our stories. It touched my heart when a nurse asked if it was okay to cry with a family.

I love this hospital and this staff and even though it was really hard, I'm glad to have been a part of the steps they are taking to make the loss process just a little bit easier. I think there are a lot of changes to be made in the way of bereavement and how families who have lost babies are dealt with and cared for. And UW has a pretty amazing thing going and I am so encouraged by their willingness to acknowledge and support families facing loss. 

Coming Up Next: Some of the things we talked about at the training.

Care Package Update

NICU Care Packages are well underway! The boxes of items are slowly filling up our extra room. I am continually amazed at the generosity of others. I always get worried that we won't get the donations that we need and that we will end up filling in the gaps out of our own pockets. That has not happened yet, which is so wonderful!

We truly appreciate your willingness to give and help out and I know the families will be thankful as well. I remember the days someone would bring in little hats or something and we would race out to the front desk to pick one, a little bright spot in some otherwise long, hard days.

The count: So far we have 29 blankets (plus a bunch I need to finish sewing), 12 hand sanitizers, 10 chapsticks, 3 boxes of Emergen-C, trail mix, granola bars, and 9 kids books!

It's funny the things that we have a hard time getting from year to year always changes. Last year the blankets were a struggle while this year we have lots (which is awesome because it's less for me to sew :)

We are still IN NEED OF:

Hand sanitizers
Small board books (we would like them to be new so we aren't taking any chances with germs)
Travel size lotions

If you are local and would like to donate any of these items, just get in touch with me and we'll arrange something for pick up or drop off. If you aren't local and still want to help, check out our amazon wish list, it's really easy to purchase something and have it shipped directly to us! 

I have also spoken with the NICU manager and asked if there was anything else that would be nice for them to have at the NICU. They are always in need of sleep sacks to use in the NICU and also to send home with families. If you have any gently used sleep sacks you would like to donate, or would like to purchase one new, let me know. 

Thank you all SO much, this truly would not be possible without all of you!

Monday, November 18, 2013

Being Back in "That" Room

Last week was brought a flood of emotions and memories. It was physically emotionally exhausting. Hard, but good. I think I'm still recovering.

Going back to the NICU has never phased me very much. It's not that our journey wasn't hard or traumatic, it was, I just think everything else we went through was bigger than that, if that makes sense. I'm not sure how, but somehow we were spared the PTSD aspect that so many preemie parents can face after a long NICU journey.

While we were at the hospital we went to visit my friend who is there on bedrest. We visited with her and her husband for a little while and then found ourselves visiting another family there on bedrest. This family was in the very same room that I was in after our boys were born. The room where I held my baby's lifeless body. Where family members came and went quietly. Where I cried myself to sleep.

The days before and after the boys were born were some of the most awful days of my life. My children's births have not been the happiest days of my life, in fact, they have been far from it. Not many parents fear the birth of their child, but I was terrified. Deep down in my heart, I knew it wasn't going to turn out well.

Sitting in that dark room, a reflection of the somber mood, listening to the babies heartbeats on the monitor, having the nurse come in and adjust the monitors frequently. It was all too familiar. The helplessness and incredible fear came right back. Memories of begging God to give me just one more day to grow my babies. And then having my water break and knowing that the time was nearing even though it was still way too soon.

I don't think I said anything encouraging to this family because the memories just came flooding back. I could feel the fear again. I could feel the heartbreak of hearing other children in the hallways, knowing that I would never hear mine. I wanted to help this family, I wanted to hug this mom and tell her that everything was going to be okay. I truly hope with all of my heart that it does turn out okay for them.

Saturday, November 16, 2013

Go, Go, Go

Some people love being super busy, me, not so much. I will take a quiet day at home with my boys over running around and having a full schedule any day.

Between our trips to UW, new job, care packages, and raising two growing boys....we're tired!

{It's never to rainy to play outside if you have a rain suit!}

I'm also going to sell a few things at a craft fair tomorrow, my first one! Sewing is my sanity, however, my boys only need so many bibs, burp cloths, etc. So, we'll see how it goes.

Thursday, November 14, 2013

Whew, I'm tired.

The first day of work at my new job was conquered.

Bunco was hosted (and still needs to be cleaned up).

We made our trip to UW to share our story.

A lot of stress eating has been done.

I'm still processing the events of today, but I will share soon.

For now, I have some boys that I haven't seen enough of the past few days that need some serious snuggle and play time, whether they like it or not.

Monday, November 11, 2013

Miss Emotional

I know I'm overdue for posting some pictures of the boys, they're coming, I promise! I have been a bit emotional lately and it's slowing me down. My friend, whose first baby was a 28 week preemie, was admitted to the hospital in labor. They were able to stop it and she is still there on bedrest. Please continue to keep her in your prayers!

I also turned in my badge at my old job last week and will be starting my new job this week.

And then on Wednesday we will be heading down to UW to speak at the bereavement training for the NICU nurses. I'm hoping I can keep it together enough to say something worthwhile.

And, the holidays are upon us. I have always loved Christmas, but since Carter died they've just been so different. We have laid pretty low the last 2 years and I don't regret it. I still love the holidays and I love getting to experience them with my family, but I am also keenly aware that there is another little boy that I don't get to celebrate with.

Oh, and the set of twin boys with their matching bikes and helmets riding down the street didn't help either. Their dad probably wondered why I just couldn't stop staring at them.

I'm a little bit of a wreck right now.

Friday, November 8, 2013

A Favor

Danny and I have to opportunity to share our story next week at a bereavement training class for NICU nurses. I feel like I have a million things I could say and nothing to say at the same time. So maybe you can help us out a bit? What has stood out to you most about our journey? What have you found helpful in better understanding the life of a grieving family? What have you learned about baby loss or grief? Or what is something that you have been glad that we have shared along the way?

Thanks! :)

Thursday, November 7, 2013

In Good Company

The soup warmed on the stove. There was excited yelling as the kids ran around the house. We gathered in the living room, some on the couch, some on the floor. Rainbow babies and surviving children played. Our conversations went from life to death. There was laughter and tears. And? It just felt comfortable.

It wasn't just any ordinary gathering. It was a group of people with something in common: loss. It's a pretty crappy thing to have in common, but it's amazing to have the support of people who get it. Not just say they get it, but actually get it. Because they've been there, or are there.

We can talk about life and death in the same sentence. We can talk about our shattered dreams and even our hope for the future. We don't have to worry about making others feel bad or whether we will get looks of pity. Conversations that would normally end with awkward statements or uncomfortable silences feel natural and unforced. The silences aren't uncomfortable, instead they are full of understanding. Heads nod as we take turns sharing because we get it. We have been loved and we have been hurt. We have loved deeply and lost greatly. In this space, I feel safe and supported. I don't worry about being judged for feelings and emotions that others would consider strange or over the top. And it's all okay. We get to speak freely and it gets to be normal (whatever that is).

I hate that anyone has to be in this "club" with me, but I am so thankful that I'm not alone.

Tuesday, November 5, 2013

Welcome Back!

Welcome back! We've missed you (even though you are all a little quiet). I quite enjoyed getting little snippets from those of you who wrote to read during our brief hiatus. I am almost finished with fixing everything up, although it really won't change anything for most of you since the majority of changes were made to older posts (deleting lots of NICU pictures and putting obnoxious wording across the remaining ones).

Anyway, making the blog private was proving to be more time consuming than just making the changes I wanted to make. So I kicked it into high gear and here we are! Thanks for putting up with us!

Seeing What I See

Cohen's sensory needs have been subtle to the outside world. When he is in a different environment, it's enough new stimulation for him to get what he needs and he is able to hold still, play, and even be fairly calm most times.

At home, it's different. He's not naughty. He's busy, wild, almost frantic at times. His need for sensory input and stimulation is higher. He gets so wound up that he becomes increasingly clumsy, "needy" (he yells "see mom", "see dad" and NEEDS to be like of us even when we are right there with him), and anxious.

When I think about it, it makes total sense. The nervous system doesn't finish developing until late in pregnancy and Cohen didn't get that chance. Not only did his system not get a chance to fully develop, he was put into an environment, even though the NICU did the best they could, that was far from womb like. He had a tube down his throat, lights, noises and lots of frequent activity. When Cohen was tiny, we weren't allowed to rub or stroke him or do any gentle touching for this reason. The only way we were allowed to touch and hold him was by cupping his tiny body between our hands, one on his head and one on his feet and giving him that "closed in" feeling. His brain didn't know how to process it then, and still doesn't know how to process it now.

He's not naughty, he's not doing it on purpose, his little body just doesn't know how to handle everything that's thrown at him and he just is like a top spinning out of control. There are days where he literally does not stop moving. Where you can see his little body almost shaking. His mind is ahead of his body and he can't physically keep up with what he wants to do and that doesn't help either. He gets anxious and almost frantic. When he gets like this, he can't play independently, he can't calm himself down, and often times we can't either.

It's so frustrating to not be able to help your child. We don't know what's going to cause him to get to that phase. We don't know how to stop him from getting there. Danny and I often send each other text messages that are either "Cohen is being really strangely calm today" or "Cohen is impossible". And again, NOT that he's being naughty but that it's just one of those days where you can't find the right book, you can't pick the right food, you can't give enough attention even though you are giving all your attention. And it's tiring. And it makes me feel horribly guilty for running out of patience and wanting a break.

But finally, someone other than Danny and I saw it. Sure, other people get glimpses from time to time, but today, someone really saw how we live 80% of our days. I'm glad that someone finally sees and understands, but I'm also sad and frustrated that Cohen has to spend his days like this. I don't want him to be anxious and feel out of control. It stresses me out just watching him run around and fall and not be able to focus on anything, I can only imagine what it feels like to him and I can't fix it. A hard day, but glad to be validated.

Saturday, November 2, 2013

The Busy Season

November is here and we are entering the busy season. I love the holidays, but I hate being so busy that I feel like I'm just chasing my tail trying to get things done and keep up with everything.

And on top of the busy season arriving, I'm starting a new job! I've been talking about finding a new job for awhile now and it all just kind of happened, and I'm hoping it will be a good change. I'm moving from the surgery center over to a urologists office (fondly known as "the pee palace") where I will be doing PACU (recovery - same as at the surgery center) and probably some other office/helping with procedural type stuff as well. I'm going from on day a week to two days. I would love to be able to stay home with my boys full time, but it's just not a reality right now. So please keep me in my prayers as I go through the whole "new job" process of learning new co-workers, doctors, environments etc.

Danny and I will also be going down to UW, the hospital the boys were born at, to share our story at a bereavement training session for NICU nurses. I am so thankful and impressed that they are doing this program. I was somewhat surprised that they didn't seem to have an official bereavement program in L&D while we were there, or maybe it just wasn't well organized, but they are a huge hospital that sees a lot of losses. So, I'm glad they are at least developing this program in the NICU and hopefully it will carry over to L&D as well.

Cohen is as busy as ever, if not busier. He hates being stuck in the house, it makes him (and me) stir crazy. We are doing lots of baths, playing cars in paint, and playing outside when we can. It just dawned on me today that because he is still physically a little iffy (can't jump, doesn't like to feel like his feet aren't firm on the ground, not such a great runner) that he needs the input from other places. We can't just tell him to go jump on a trampoline or run outside because he can't quite physically do those things yet. Ideas for extra stimulating activities welcome.

Ezra is still as cute as ever. Aside from his non-napping habits, he is a really good baby. He is always smiling and is happy just to sit and hang out or roll around on the floor. He has been getting up on his knees and pushing himself onto his face and today I caught him on all fours. So not okay. I need him to stop growing up so fast!!

That's the weekly news around here. Thank you all for continuing to support our little family and for reading along. It's been really fun to hear little snippets of who is "out there" when I get emails to keep reading since we went private. I'm sorry I haven't gotten a chance to respond to all of you, but it is fun to hear about you and your families as well.