I Will Carry You

As I was writing yesterday's post, I was remembering the day that we brought Cohen home and how happy we were to finally have him home. It was bittersweet though, we should have been bringing twins home. The joy of bringing Cohen home was coupled with the pain of seeing only one crib in his room. The few sets of matching outfits we had time to get were still hanging in the closet, never to be worn. The second carseat shoved in the back of the closet until we were ready to deal with it (it's still there).


While we can't have him here in our earthly home, we know that he is at home in heaven. Sometimes it is easy for me to remember that he is happy, healed and whole in heaven, and sometimes it's not. I'm glad it's true whether I feel like it's true or not. I am happy for him that he is with God, never to feel any pain, but I hurt for me that I don't get to have him. Selfish, I know.

I often listen to this song on repeat and I cry every time. We just miss Carter so much. Some days my arms physically ache to be able to hold him again. I like the part that says "I will carry you, all your life...long beyond the empty cradle". I did carry him for almost every moment of his life on this earth, while I was pregnant and as he left this world. I will also carry him all of my life. While I can't carry him physically, he is never far from my thoughts and he is always in my heart and I know that God is now carrying him for me. 

I Will Carry You

There were photographs I wanted to take

Things I wanted to show you

Sing sweet lullabies, wipe your teary eyes

Who could love you like this?  People say that I am brave but I'm not

Truth is I'm barely hanging on

But there's a greater story

Written long before me

Because He loves you like this

So I will carry you

While your heart beats here

Long beyond the empty cradle

Through the coming years

I will carry you

All my life

And I will praise the One who's chosen me

To carry you

Such a short time

Such a long road

All this madness

But I know

That the silence

Has brought me to His voice

And He says

I've shown her photographs of time beginning

Walked her through the parted seas

Angel lullabies, no more teary eyes

Who could love her like this?

I will carry you

While your heart beats here

Long beyond the empty cradle

Through the coming years

I will carry you

All your life

And I will praise the One who's chosen Me

To carry you

Outnumbered

As of today, Tuesday February 28, Cohen has officially been home 131 days. One day more than he was in the NICU! This is a little bit crazy to me, it feels like he has been home forever. Our NICU days are becoming more of a thing in the past. A part of Cohen's history, but not who he is. In regards to Cohen, it's hard to believe that he has just now been home longer than he was in the NICU. Finally, his days at home outnumber his days in the hospital. While it feels like Cohen has been home for ages and our NICU journey starts to fade, it feels like just yesterday that we held our tiny, perfect Carter and said goodbye.

 {Last picture in his NICU crib}

We are so thankful for every day that we have had with him, both in the hospital and out. We are thankful that we have never had to go back into the hospital for any reason. We were warned that we could get him home and encounter feeding or breathing problems or that he could even need to be readmitted if he needed eye surgery. In fact, his discharge papers said that "...family is aware that this may entail re-admission to a hospital". We have been praying since the day that he came home that he would stay healthy enough to remain at home. And he has!!

 {Cohen's friends awaiting his arrival home}

Cohen is such a little light in our lives. He has a fighting personality that he has had since the day he was born. We are also thankful for the strong spirit that God has given Cohen. The more time we spend with this little fellow, the more we come to know about him and the more we love him (if it's possible to love him more than we already do).

Not getting to watch Carter grow up has made us that much more thankful that we do get to watch Cohen grow up. We know that things could have turned out very differently and that we could have lost both our boys. The reality of not getting to bring Carter home has made us really enjoy and appreciate the miracle that Cohen (and all babies) are. We try not to take for granted any of the moments that we have as a family.

{First family picture at HOME!}

Happy 131st day at home, Cohen!!!! Thanks for being a happy, stubborn, driven, cuddly, adorable, chubby cheeked, dimpled little boy. We love you more than you will ever know.

Weekend Getaway

This weekend Danny and I went on a little getaway weekend to Leavenworth for Danny and our friend Steven's birthdays. Cohen stayed with Gramma and Grampa (THANK YOU!!) and he did wonderfully.

We left Friday around noon, I met Danny after work and we drove to Everett to meet some of our friends. We loaded up the car and off we went over the pass. We had a relaxing afternoon and then the rest of our friends showed up in the evening. I didn't get a picture of everyone, but there were 9 of us there.

It was a nice, relaxing weekend that I think was much needed. We spent the weekend visiting, sitting in the hot tub, playing games, doing puzzles, and eating junk food. I had never actually been to Leavenworth, so on Saturday we went to see the sights. The boys were excited to find sausages and I was excited to find a pretzel. We brought Cohen a cool wood puzzle which he liked and immediately took to chewing on the pieces. We had brought snow shoes (along with half the house) but we weren't ambitious enough to find somewhere to snowshoe. We just enjoyed our weekend of rest.

I was a little bit of a slacker this year in the cake department as I was working on Danny's birthday. My plan had been to make him a cake at the cabin, but instead I frosted a giant rice krispie treat and called it a cake.

 {Steven got a cake and Danny got a giant rice krispie treat with frosting}

We called Cohen before bed and in the mornings to "talk" to him, which our friends really enjoyed. Cohen told us that Gramma had been feeding him oatmeal, fresh squash, and Ritz crackers.

It was a fun weekend, but we were pretty excited to get home to Cohen. We picked up our car in Everett, drove through a blizzard in Bellingham, and came home to sunshine at our house. Cohen was napping so we just went in and looked at him and waited for him to wake up. He woke up, drank an 8 oz bottle like a champ, and then demanded that we feed him over half a jar of squash. Gramma taught him well!

 {Birthday Boys...this is the best picture I could get of them}

 {Driving over the pass}

{Blizzard half an hour from our house}

{And sunny weather at home}

 {And home to this cute little face}

Last year at Danny and Steven's birthday party, we made the announcement to our friends that we were pregnant with twins.


*And also, I was reminded the other day by a friend who is already collecting things for the next NICU Care Packages, to remind you...if you want to help out with the next set of care packages, start collecting now! Here are a few things you can keep an eye out for: Shampoo/Conditioner samples or travel sizes, kleenex, small lotions, and hand sanitizers. If you are a knitter, crocheter or sewer you can also start making preemie baby hats. More details on when the next collection will be are coming soon. Thanks!!*

Fess Up Friday

* While cleaning the house last weekend, I pulled 2 binkies, a slipper, a book, a notebook, a hair rubberband, a leaf, a toy jack, scrapbooking tape, and the other slipper from under the other couch. Hmm, guess I should check under there more often.

* I seriously considered putting a thumbtack on my doorbell after it was being rung several times a day. Not a good idea to ding dong ditch the crazy lady's house. We were also naive enough to believe the group of young girls standing out on the sidewalk in the dark that said they didn't do it and "hadn't seen anyone".

*After months of randomly hearing Christmas carols while standing at our sink and practically tearing apart the
 garbage disposal multiple times, we finally figured out that we have a singing soap dispenser. It only works once every few weeks which was adding to our confusion as to where it was coming from.

* After working a 10 hour day I hardly got to see my husband on his birthday :( And I still have a really hard time leaving Cohen.

* While practicing our new method of "squeezing" Cohen, I discovered that he is incredibly ticklish and that he giggled anytime I squeezed his little thighs. I may have done it repeatedly just to hear him laugh.

* I was so excited about this picture and I was saving it for Valentine's Day and then I forgot to post it. So, here it is.

Happy Birthday!!!

Happy 26th Birthday, Danny!!!

{Recognize this look?}

 

 {22 Months}

Dear Daddy,
I love you so much, you are the greatest dad a boy could ask for. When I grow up I want to be as patient and tall as you. I also hope that I can carry on the family tradition of making better cookies than mom. I can't wait for this summer when we get to go hiking and you will carry me around in the backpack and I will get to see the world. You have taken such good care of me since the day I was born. I always looked forward to the days that you were coming to see me. The days that you read me "Spot Goes to School" and "Peter Rabbit" were some of my best days in the NICU. I loved snuggling you and running my fingers through that bear rug on your chest. I can't wait to grow up so you can teach me how to play football and baseball. Mom says I'm not allowed to play football until I'm 25, but we'll see about that. I hope you have a really great birthday and thanks for loving me so, so much.
Love, Cohen

More Processing

I'm sure you all have been waiting for the happy, flowers and rainbows post but this isn't going to be it. Sorry! I've been struggling quite a bit lately. I really do wish all was fine and dandy. But it's not yet. It seems that since we are finally out of survival/crisis mode, everything has kind of come crashing down on me. Everything we have been through in the last almost 9 months that we have had to mostly suppress because we just had.to.keep.going is now right in front of my face. And it's not fun.

We went from "your babies may not make it to viability", to "your babies are coming today", to " you lost one of your babies", to "you may lose your other baby". The constant stream of stress and emotion was just too much for me and for the most part, I shut down emotionally.

And now it has all caught up with me and it's really hard. People probably think that we are fine and that we have moved on by now. We haven't. And that makes it really hard because in the world's eyes, it's been 9 months and we still have a baby. The shock has worn off for others. But here I am, still feeling like it happened yesterday and I am in the midst of the storm. Some days I feel so alone. We are so, so thankful for all of the cards, calls, gifts, and prayers we received when the boys were born. Part of me feels like I didn't get to fully receive the support because we weren't physically able to receive hugs, meals, prayers etc. Usually when a child dies, that's it and you are at home to deal with it, to see the people you love, to get hugs, and to have people stop by your house. We were 2 hours away from home and while we felt the support around us, we weren't in the midst of it. If that makes sense. I think there is something healing in knowing that people are rallying around to help and support you in a crisis, but because of the circumstances we weren't able to fully immerse ourselves in the love and support of those around us. Again, that doesn't mean that we are ANY less thankful for everything everyone has done for us, we just wish we would have been able to really be present in those moments.

In a way, I feel like I separated myself from people in the time that I needed them the most. At the time, we were doing the only thing we could, which was to stay strong for Cohen. If I could go back and change it, take more of the help and support offered, I would have. At the time, we were doing what we could to stay strong for Cohen in the best way we knew how.

I read this in a book I am reading and I think it is so true. "The primary task of healing, therefore, is not to disconnect from each other and from life. When we disconnect we become overwhelmed and are at our lowest ebb. We can only deal with survival  - and sometimes not even that. When we are overwhelmed, it is difficult to think clearly or hear what is being said to us. We are lost and at the mercy of our environment. Healing, on the other hand, asks us to be present, conscious, and aware." (From Good Grief by Deborah Morris Coryell). I think in our efforts to survive we disconnected from many of the people who love and care for us. And now, when I feel like I am back in the midst of my grief, I sometimes feel so alone.

I just wanted to say thank you to those who connected with us, who were there for us even if we weren't all the way there. Thank you for caring about us. We needed you then and we still need you now. Thanks for hanging in there with me as I walk this unknown, painful, confusing journey. Thank you for keeping us in your prayers. I know God will continue to carry us through and I am holding onto that.

A Sigh of Relief

We breathed a pretty big sigh of relief today. After increasing frustration over fighting Cohen to eat, sleep, and play, we called his OT to come for an appointment. She usually only comes every other week but we decided to have her come this week to see if she could give us any advice.

 {We gave Cohen the plate to see what he would do and he picked it up and licked it!}

She went over a sensory processing checklist with us, and while Cohen is too young for some of the list, it was interesting to see the things on it and which ones he did or didn't do. She also thinks it will be beneficial to have Cohen evaluated by someone who specializes in this area.

 {He loves his spoon}

We also talked about the fact that we have to (literally) struggle to get Cohen to eat between his fairly constant back arching, squirming, and arm waving. We have had a pretty hard last few weeks and were hoping for some kind of help. She showed us ways to help Cohen "collect" himself. He seems to be a sensory seeker...constantly looking for sensory input. We learned how to hold Cohen with his legs up and his arms in with a little gentle pressure to help him get organized. She also showed us how to "squish" the baby, or give him a little massage to give him the sensory input he wants in a more positive way and help him refocus and settle down. After she gave him a little massage he actually SAT in my lap quietly without struggling to get away. It was pretty amazing and I was so surprised.

I had my mom give him a little massage while he was in his crib for naptime and he slept for 2 hours!!!! I think this is a first for us (or at least very rare). Generally, he sleeps for about 45 minutes at a time and is maybe awake for an hour to an hour and a half at a time.

 {Little boy in his big high chair}

When he woke up from his nap I put him in his little squeeze hold and then fed him his bottle and he drank the whole thing with only one little leg kick! I am really hoping this continues and that hopefully we have found a way to keep him (and us) happier. It's just so hard to have him be fussy and fight everything we try to do, even though we know it's not his fault. We just want him to be able to be a baby and play and have fun and not have to be constantly stressed out.

{Practicing eating his big boy cracker}

Please continue to pray for us as we look into this more and try out our new techniques. We are REALLY hoping they continue to work.