Monday, April 30, 2012

A Weight Comparison

Hey Cohen!

Yeah, you....

You know that container you are playing with?

That container weighed 2 grams more than you did at birth!

I know, I don't know how it's possible either, but it's true. 

 Yes, I'm sure! That container weighed 680 grams and you were 678 grams.

Yes, it is amazing, and yes, we are so proud of how far you've come.

Cohen weighed 1 lb 8 oz at birth.

Can you guess how much he weighed at his doctor's appointment today at almost 11 months old!?

Saturday, April 28, 2012

Ice Cream Time

Last night Cohen went to spend some time with Gramma and Grampa while Danny and I had a little date. Grampa is the turnaround planner out at BP and they are (hopefully) almost done. He finally had a day off and Cohen has been asking to see him, so off he went.

Danny and I were both a little tired so we just stayed home and made dinner together. After dinner we went and rented a couple movies and made our first trip to Edaleen Dairy for the summer. They have my favorite ice cream ever and we didn't get to go much last year so we are taking full advantage this year. Then we went to pick up Cohen and visit with my parents for a little bit. We wanted him home in time for bed so that he could hopefully continue his routine of sleeping well in his bed without a swaddler!! By the way, he is back to sleeping through the night. I didn't hear one peep out of him last night and he slept from 8 pm to 7 am. Hallelujah! I am so thankful to have a good sleeper :)

 {Helping Grampa mow the lawn}

Anyway, we walked in with our ice cream cones, and a shake for Grampa, and Cohen saw my cone and just started lunging at it. So, of course, in true Rinehart fashion, we let him go for it. And he loved it. And then he was so wound up he earned himself a nice tight swaddle in a blanket to settle him down.

{Stopping to see the chickens}

Baseball Season

We have a few busy weekends ahead of us. We are headed to Seattle today for our friend Bridget's baby shower and next weekend for the March of Dimes. Baseball season is here. Danny played on my brother Joel's church softball team. We went to his practice the night before but didn't make it to the game since it was past Cohen's bedtime. We thought the game was going to be at Bender, which is within walking distance of our house, but at the last minute we found out it was farther away, so we opted to stay home and go to bed on time. Karen took some pictures for me since I wasn't there.

{The boys - Josh, Danny, & Joel}

Danny also likes to listen to the Mariner games on the radio in the evenings (although we usually only make it halfway through before they start losing horribly and we turn it off). They have the game on in the living room while they play on the floor.
{Listening to the game with his rally cap on}

{Danny's turn}

Friday, April 27, 2012

Fess Up Friday

Fess Up Friday is FINALLY back...

* Sometimes I wonder why we even buy Cohen toys because his favorite things to play with are the crevice tool from the vacuum and sweatshirt strings

* I don't like peanut butter in my chocolate (except for peanut butter M&M's) I know, call me crazy.

* I find Danny's ever increasing frustration with the Mariner's funny. I laugh when he says things like "It's like we're the special ed team of baseball", which usually makes him more irritated. And then I post things on his facebook wall like, "Hey, did you hear about that inning the Mariner's had an 8-1 lead and they somehow let Cleveland score 7 runs to tie the game?"

* We keep our potatoes on top of our washing machine, for lack of any better place to keep them. Some of them fell back behind the washer and are still there because I can't reach them to get them out.

* I laugh when Danny hits his head on things because you would think after 10 years of being that tall he would figure it out.

* I may have slightly overreacted when I thought Danny had eaten my leftover pizza and only left one piece for me. I may have sent him a hangry text message accusing him of eating all my pizza. I may have later discovered that he only ate one piece and that I had misplaced the rest in the fridge.

* While taking my ponytail out I found a bug in my hair. Yuck. My hair is good at hiding things and we've been doing a lot of walking outside, so no telling how long that was in there.

And, in case you missed this picture on our facebook page, here is Mr. Pacific Northwest in his socks and sandals and wearing shorts at 55*

Thursday, April 26, 2012

Just a Phase

A certain small someone, whose name I won't mention, has decided that it is really fun to unswaddle himself, do acrobatics in bed, yell, pee through all his clothes and sheets, and eat his baby monitor. He's also decided it's really fun to do this starting about 3 am until whenever we give in and get him up. As a result, his naps are all out of whack and he tends to be a little bit of a huge crankypants.

It's a good thing he's still cute, even if his parents are exhausted. Here's to hoping it's just a phase and we will get our sleep through the night baby back. I'm not sure Cohen realizes I am NOT a morning person.  I'm repeating to's just a phase, it's just a phase...

Tuesday, April 24, 2012

The One Years

We are coming up on more of our "one year ago" milestones. So far they haven't been too hard. The one year ago we found out we were having twins, one year ago we found out they were boys, one year ago Cohen had a funny test result.

But now, the hard ones are coming. I didn't think it would affect me this much but I can already start to feel it sneaking up. Even a few days ago, I was talking to a friend and telling her that I thought I was doing okay. And then just like that, it hit me. May. The month when things started to get really hard. When we found out that the boys would be early, it would just be a question of how early. We were told that our babies weren't viable and at this point there would be nothing that could be done to save them. We were diagnosed with TTTS. I stopped working and was put on bedrest at home. And then the day I went in for my appointment and was told to go home and pack some things and drive to Seattle to be admitted to the hospital. Those days were so, so hard. There were many tears, prayers, and pleas for my boys.

And now, those days are coming back to me. I can't believe it's been a year and yet it seems like just yesterday. My friend and I also talked about how there are certain triggers that bring back so many of those feelings and emotions. For me, it's double strollers reminding me of how I thought my life would be. It's that shirt I found in my closet that I wore while I was pregnant. It's sitting on the couch where I spent my days on bedrest. It's the weather. It's just all coming back like a big rush and I can't get away from it. I suppose these are things that I need to go through. It's just hard to feel like I am reliving those days of fear and the unknown. But, there were also good moments. The moments I could lay on the couch and feel my boys moving around. Where I could see their little rumps or heads or arms or something poking out of my belly. Back when I had them both.

There are days when I leave the house and as I leave, I turn around and look at my house just how it is. I remember coming home for the first time after the boys were born. It had probably been around a month since the last time I had seen my house. I walked through the front door and it was just so strange to see my house exactly the way we had left it that night we drove to the hospital, like nothing had changed. Except everything had changed. Everything we knew had been turned upside down.

The death of Carter and the roller coaster of having a NICU baby seem to be two huge life events in themselves, but we were experiencing them simultaneously, while not being able to really fully deal with either of them. 

It's going to be hard, I know it is. As the days come and I go through those "one year ago" moments, it's going to be so hard. I wish I could just skip over it or hibernate for a few months and wake up when it's over, but I know this is something that I need to go through, despite the pain.

My friend sent me this and I just thought she said it so perfectly. "This single twin loss thing with a micropreemie survivor is a unique and complicated journey.  Grief for Carter didn't hit all at once because you were wrapped up in using all of your strength, gratitude, and faith to keep Cohen alive.  Only now that he is home and growing well and life has mellowed some in those scary medical ways do you have ability to be emotionally punched in the gut. You are coming up on all of the "firsts," only this time you don't have the luxury of the unknown or the escape of shock/denial.   You know exactly how it all went down and you are dreading reliving it.  You are not crazy.  You are not sinking into an emotional abyss from which you will never escape.  You are not being ungrateful for the blessing that you have in Cohen's survival.  You are not taking an alarming step backward in your healing process. Your faith in God is not faltering.  This is just part of this weird journey and I wish that I could just help you bypass this messy business entirely... but I can't  :(   You can do this.  You can do hard things, after all.  VERY hard things" Thanks friend, I needed that, and I hope I can do it.

Monday, April 23, 2012

And the Winner Is....

Thank you, thank you, thank you to everyone who donated and sponsored diapers!! We love that we have these opportunities to help raise money to help other babies and also to donate little diapers to other grieving families. I just got an email that we are one of the top 20 family teams in our area. Awesome! It's not to late to donate.

With your help, 240 diapers have been sponsored!

 After sampling the entrants, Cohen was ready to pick a winner. He actually picked a few winners, but we picked the one that stuck to his hand the longest.

And the winner who gets to babysit Cohen pick the next hospital to donate to is............

Congratulations, Bronwyn!! Email or facebook me and let me know if you have a hospital in mind you would like some diapers to go to.

Also in our house this week, we are introducing the N-O word. I know some of you don't like that word or don't say it to your kids, but we do. We have known from the start that Cohen was going to be a strong-willed, determined little boy. Which has it's advantages, but he will also need firm boundaries. He has started to purposefully arch his back and throw his head back. And thus, the beginning of "no". I think he knows what it means too. I generally put my hand on his tummy and just tell him no. He always looks at me and then stops (for a few seconds anyway).

Don't worry though, Cohen's life won't be defined by things he can't do. It hasn't this far, and it won't in the future. If Cohen wants to go play in the dirt, he will get a yes. We want him to try new things and to be adventurous. We want him to know that he can do whatever he puts his little mind to. But, we also believe as parents it is our job to shape the way he grows and learns and to keep him safe.

{Enjoying the sunshine}

I came across this picture this weekend, isn't he so sweet? Sigh, how did he get to be so grown up...make it stop!! 

Saturday, April 21, 2012

Saturday Camera Dump

Just a few pictures for your Saturday. Some people do a phone dump of their pictures, I'm doing a regular camera dump. Enjoy!

{Isn't this how you are supposed to play with this?}

{Friday afternoon stroll}

 {Enjoying the outdoors}

 {Going down the slide with Auntie Karen}

 {Picking Dandelions at the park}

 {Eating dandelions at the park}

And of course, today is the LAST day to sponsor diapers!!! I will have Cohen help me draw the winner this weekend and post who gets to pick the next hospital to donate to on Monday. Thank you all SO much. Happy Saturday!
{Seriously, how cute are these. Perhaps you want to sponsor them?}

 {Or how bout this one?}

Friday, April 20, 2012

Carter Garen - Safe in the Arms of Jesus

Today I am linking up with Kelly's Korner blog for parents who have lost children.

I am in that club that no one wants to be a part of or ever imagines that they will be a part of. In early 2011, we found out we were expecting identical twins. Hardly anything about our pregnancy was easy and due to complications, the boys were born at 25 weeks. You can read the whole story here. Our Cohen weighed in at 1 lb 8 oz, and his brother Carter weighed 2 lbs. Carter was just too sick and died in our arms.

Where does one start with what it's like to lose a child? How can you ever put into words the heartbreak and devastation of saying goodbye far too soon? It is impossible to describe to someone else what it feels like to hold your baby for the last time, knowing you will never see him on earth again. I can't tell you the feelings or emotions that go with trying to memorize every detail of his sweet face, looking over impossibly tiny fingers and toes, and feeling the weight of your baby in your arms, willing him to just open his eyes. Begging God to let me wake up from the nightmare. Words like painful, heartbreaking, full of anguish, and sorrow don't even scratch the surface of what it's like.

I lost a lot of hopes and dreams with the birth of Cohen and Carter. Our pregnancy was hard, the birth of the twins was hard, having Cohen in the hospital, living in a hotel for four months, while grieving the loss of Carter was hard. Well, actually, hard doesn't even begin to describe it. I know that it was only by the grace of God that I could get out of bed every morning to go to the hospital to be with Cohen. I would trudge to the hospital day after day, wishing I was going to see both of my boys. My heart was so full of fear that I was going to lose Cohen, too. People would tell me to "have hope", and I tried as hard as I could, but my heart was hurting so deeply. I have mentioned this before, but one of my deepest hurts is that I won't get to see my babies grow up together and that Cohen won't get to have his brother.

At first, I was so angry. I wrestled with God, I questioned how he could take my son away from me and I wondered how he could let Carter die. I couldn't understand how a God who controlled the entire universe could make me live without my baby. But, through many loving family and friends, I was reminded that God is still in control. God didn't cause Carter to die, death is a result of sin in this world. That was a hard truth for me to swallow, some days it still is. I still can't say that I understand it all perfectly, I'm not sure that I ever will until I get to heaven. What I do know, is that this doesn't change who God is. He is still good. He is still here for me. God is in the joy and he is in the hurt. Because of what he has done, Carter can be with him in heaven and I have the hope of seeing him again.

But, I have also gained a lot of new hopes and dreams. I have the hope of seeing Carter again someday. I have the dream of seeing my twins reunited in heaven. I have a deeper understanding that this world is not my home. I have learned to cherish the moments that I have/had with them. Poopy diapers, late night bottles, a fussy baby, while not easy, I will take it all because it means that I get another minute with my son. I take millions of pictures and videos of Cohen and I don't regret it. I'm okay with toys scattered around the house. I love celebrating every little thing Cohen does. Do I still get tired, cranky, and ungrateful? Of course, I'm not perfect. But, the reality of not having those moments with Carter, has made me realize that I need to be thankful for everything I have, easy or hard.

Hug your kids a little tighter today. Be thankful for the gifts that they are, even on the hardest of days.

Here are a few things about losing a child that I hope can be helpful:

* Don't compare losses. Losing a child is not the same as losing your pet or your great Uncle.

* If you haven't been there, you don't get it. But thank you for supporting us and trying to understand. Most of us are thankful that you don't know what it's like

* Time doesn't heal all wounds. We will move forward, but this is not something we will ever get over.

* We are thankful to have supportive friends and family who are there when we need them to sit with, cry with, and to hold our hands

* You don't have to have the right thing to say (although there are some things that we don't want to hear). Just being there for us is enough. But thank you for wanting to help take our pain away

* We don't know what we want or need, so just come over, bring food (or leave it on the doorstep), clean our house, help with other children.

* When we hear people complaining about their children or pregnancies, it is incredibly difficult. We would give anything to have our children here with us. 

* Please send cards, they are so healing and it's nice to know that people are thinking of us, even later on when the rest of the world has moved on

* Ask about our loved ones. We are thinking about them anyway.

* And also, please know that we are thankful for everything you do to support us. Even if we don't send out thank you cards or notes. We really are grateful.

Thursday, April 19, 2012

I just have to say how much I love our little Cohen bear. He has made some pretty amazing leaps and bounds this last week through his therapy. It was like all of a sudden, he figured a few things out. And now, he snuggles. And he sits up. And he plays by himself with toys on the floor. It has been so wonderful. Now, when he gets worked up, I often wonder how we did that all day, every day.

I especially love the snuggling part. Before, we could never hold him for very long because he would struggle to get away. Now, he will sit in our laps and play and we can read him stories and he will even lay his head on our shoulders and just be. And we are loving it.

We are still working on a few things, but once we show him what he should be doing, he seems to pick up on it pretty quickly. He is such a smart boy. I was playing with him on the floor tonight and I just thought back to the days where the Drs called him a "wimpy white boy" and that in comparison to other babies (girls, babies of other ethnicities etc.) he would have the hardest time. I remember him struggle for 2 months to have lungs strong enough to be off the ventilator. There were days I wasn't sure that was every going to happen. And now, I can't help but think, if only they could see you now. Well, you know, we didn't do a whole lot, but his little fighting spirit and the prayers of so many of you sure did. So many days I felt so helpless to do anything for Cohen, so I would sit by Cohen's isolette and sing to him. I sang this song to him over and over. 

My God is so great, so strong and so mighty, there's nothing my God cannot do.
My God is so great, so strong and so mighty, there's nothing my God cannot do.

The mountains are his, the rivers are his, the stars are His handiwork, too.
My God is so great, so strong and so mighty, there's nothing my God cannot do, for you!

We are just so thankful for our little man and for how far God has brought him.

Wednesday, April 18, 2012

For Love of Carter

Update: We have 50 "Carter edition" diapers sponsored!  Let's make it 100!? You guys are awesome!
There is this certain train fabric at Joann's. It's the same fabric that Cohen has a blanket out of and the same fabric that Carter got his pictures taken with by NILMDTS. Every time I see it I can't help but buy it, I have this strange fear that it might run out and I might not ever see it again. It makes me think of my sweet boy whenever I see it.

For today and tomorrow only, you have the chance to sponsor the "Carter edition" diapers made out of this very special train fabric for the March of Diapers. It's easy, all you have to do is make a donation to our March of Dimes team. Then be sure and let me know if you sponsor any diapers so that you can be entered in the drawing to pick the next hospital that we donate to (after UW)!

 One set of diapers $2
Set of 5 diapers (10 individuals) $5
Set of 20 diapers (40 individuals) $20
 Thank you so, so much to those of you who have already supported us in the March of Dimes and with the diapers! These are both projects that I am quite passionate about so I appreciate all of you supporting and encouraging us. Bringing comfort to other families through these diapers gives me a renewed sense of purpose and are a project that I really enjoy working on.

You have touched a lot of lives in your short life here on earth.
You have touched my life in such a way that I will never, ever be the same.
I think about you every single day and am constantly reminded of you.
You make me want to make me want to be a better person.
You make me want to make this world a better place. 
I can't wait until the day I can kiss your little cheeks again. 
Love, Mom

Tuesday, April 17, 2012

Airplane Mode

This is Cohen's airplane mode. This is what we are trying to teach him not to do. I apologize that all these pictures are blurry, he moves so much. But, we have been amazed at how much a few weeks with his new OT has done!! He is calmer, happier, plays on the floor by himself, fusses way less, and is much less frantic. He actually does less "airplane mode" but still resorts to it once in awhile.

Oh, and also, he can sit up all by himself!!! Also progress because of OT!

Sunday, April 15, 2012

Life Besides Diapers

I know there has been a lot of diaper talk lately, but I can't help it. I am just so excited about this project. It has been really healing for me to be able to put some of my energy towards this.

Anyway, besides diapers, what have we been doing?

Mowing the lawn. Putting our feet in the grass. Running outside anytime we see the sun. Scooting. Sitting up for more than 3 seconds. YES! That's right, Cohen is almost officially a sitter. He can sit for several minutes but still gets a little too excited and falls over sometimes. Sewing diapers. Oh, sorry! Getting $65 worth of clothes for $20 at Old Navy on a recent shopping trip, I was pretty proud of that (it came out to $2 a piece if you are wondering, under my $5 budget!). Thinking about weeding my front little garden. Spitting up everywhere. Cleaning up spit up from everywhere. Starting a new reflux med. Planning a birthday party. Getting excited about summer. Working. Making plans for summer. Eating scones. Going for walks. Planning our annual Memorial Day camping trip.

Yep, I think that's about it. Here's Cohen's version of what we've been up to. He has milk all over his face because whenever he drinks his bottles he thinks it's fun to hold on to the nipple and try and put it in his mouth which makes milk go everywhere. This happens about 30 times during an 8 oz bottle.

Saturday, April 14, 2012

Count it a Success

I am counting our first diaper night, a success! We had 9 people come to make diapers. I was a little hesitant to get too excited about how much we would get done because three friends had called to say they were sick and couldn't make it. But, we still got a lot done and this has saved me weeks of work. We had four trusty helpers cutting out diapers, my mom and her BFF on the sewing machines, two helpers turning diapers to be ironed, and yours truly on the ironing board. My niece Michelle was also there, although she isn't in any of the pictures because she took them all. She was so excited about helping and kept asking about how happy I thought the families would be when they got the diapers. I'm not sure she knew the diapers were for babies that have died, and I didn't have the heart to burst her bubble.

 {Cutting Crew}

{Faithful sewers}

  {The smallest helpers}

 {The diaper turner}

 {The iron master}

{And of course snacks to keep the workers happy, all from my mom}

We got 120 diapers nearly finished and a whole stack cut out waiting to be sewed! I was feeding Cohen his late night bottle, since he had been too distracted to eat with the company here, and it occurred to me...we finished 120 diapers, the same number that have been sponsored. How cool is that??

We had a lot of fun, got a lot done, and I am already looking forward to the next diaper night. If you are a sewer who needs a project, this would be perfect for you. A huge thank you to those of you who came!

Also, will you please keep this family in your prayers? Their little girl Esther was born on 4/12 with a congenital diaphragmatic hernia. There was a hole in her diaphragm that allowed some of her organs to be pushed up into her chest cavity not allowing them all to develop properly. The doctors told her parents that she wouldn't survive after birth, and again later while they were working on her. But she is a little fighter. This is a local family (Esther's mom used to babysit me) and Esther was born at UW and transferred to Children's where she is on a heart and lung bypass machine waiting for surgery. They have a long road ahead of them and the emotions of watching your child struggle for life are so exhausting. Thank you for praying for them! Give your kids an extra hug tonight. I know I am so thankful for every minute that I have with Cohen.

Friday, April 13, 2012

Friday the 13th

I have done a lot of things absolutely nothing that I feel the need to fess up to this week, okay, maybe that's not true. But these pictures were way too cute not to share. Cohen spent the day with his auntie yesterday while I was at work and she took all these fun pictures.

Also, Cohen is mobile! Not completely, but he has figured out that he can roll to get where he wants and has also been doing some forward lunges from the crawling position. We started phase II of babyproofing. As we speak he has rolled across the entire floor and is eating a chair. He thinks he's pretty cool. I have about 10 million cute videos of him...I will try and put one up later today. You know, in between madly cleaning my house for diaper night, doing loads of laundry, and hopefully taking a nap.
Also, I dropped my first batch of 60 diapers (30 sets) off to St. Joe's!! My mom also made some little angel wrap blankets and some other friends made little hats. I had a weird start to my morning, so I was actually really happy to have the diapers to drop off. I hope that no one needs to use them, but I hope that if they do, it will bring them some small amount of comfort. And of course, if you haven't read Cohen's post (or haven't sponsored diapers yet) be sure to go read it. We have 70 sets sponsored, but need 30 more to reach our goal! We are having a little work night with a few people tonight to hopefully make lots of diapers. Next stop, UW!

Update: Thanks to another donation, we have passed our goal!! We now have 120 sets of diapers sponsored! Woohoo! Thank you all SO much. And, just because we passed our goal, doesn't mean you can't still sponsor a set (or 10)

Thursday, April 12, 2012

That Shirt

The other day I came across a shirt that I haven't seen in awhile. When I saw it I felt this great sadness come over me. I tried to think if something significant that had happened while I was wearing the shirt. I couldn't pinpoint anything exactly, but I think it just made me think of before. You know, before our boys were sick, before when I still had them both.

 It's the shirt that I wore for one of my last weekly pregnancy pictures at home, standing in what was to be our twins' room. My hair is a mess from laying in bed. I remember that I had this horrible feeling deep down in my heart that things weren't going to turn out how we wanted. I just knew it. I tried to ignore it and hoped and prayed that I was wrong. That's what that picture looks like to I was going through the motions of being pregnant, but that I knew I wasn't going to get my happily ever after. The smile on my face is a different one than in those first weeks. I remember wondering if we should even be taking these pictures, because did we want the reminder? At first I had always thought that I would never want maternity pictures, just for my own personal reasons. Then, after things started to get scary with the boys, I wanted them. I had asked Danny if we could and he said yes. But, we never got to it. In the end, I'm glad that we have those other pictures, because of course those are pictures of when I still had both of my boys. Back when we were still parents of twins.

Sometimes I wonder why it had to be my child. Not that I would ever want it to be anyone else's child, but why mine? Why do I have to be the mom that doesn't get to see her child grow up? Why was I chosen for this journey? Why couldn't I have had him just a little longer? Why does Cohen have to grow up without his brother? Sometimes I don't want to be strong anymore. I want to fall apart. I remember telling someone shortly after the boys were born that I wanted off of the roller coaster I was on.

I still haven't worn that shirt again, even though it's a regular shirt, not a maternity one. I just shoved it back into the drawer until I decide what to do with it. I wouldn't trade either of my boys for anything in the world. If I had the choice to never have known them or to go through what we went through, I would do it all again. I just wish it could be different. I know it can't, and I know that some good will come out of this, but some days are just so hard.

Wednesday, April 11, 2012

The Busy Boy

We have had a few meetings with our new OT and we really like her a lot. I've been meaning to post about it, but just haven't gotten around to it. Of course the day we took Cohen in for his evaluation, he wasn't feeling that well and cooperated nicely with everything she tried, despite my telling her that this was not his normal behavior. Thankfully, his regular OT was there and she could vouch for me that this wasn't typical for him.

The good news is, she thinks that all of his "issues" are a result of his prematurity and she doesn't think that they will be lifelong things. We would have loved him and did what we needed to regardless, but I am glad that these are things that we can hopefully work through.

We've been learning a lot of interesting things and finding new ways to help Cohen. Because he was born so early, he didn't get all that time squished in the womb in the fetal position. His brain also didn't get a chance to finish forming all of its neurological connections. Susan (his new OT) thinks that he just has a few gaps and when he learns or relearns those things then he will be much better.

Cohen is very "out" all the time. His arms are always straight out, his legs are always straight out, he is always looking far out and doesn't focus on things close to him very well. Again, this goes back to not getting all that time in the womb to be in a flexed position. Instead he was out in the world in his isolette, and while the nurses tried to make it as womb-like as possible, it's just not the same. Cohen has little awareness of "in", his own hands and feet, he has trouble focusing on faces and things that are close to him. Being in the out position all the time is an alarming thing and it causes him to get very restless and fussy and busy

 Cohen's other big issue, that goes along with the above, is that up until recently, he was always in an extended position with his back arched. He learned how to do a lot of things by arching his back and now we are trying to get him to be in more of a flexed position, which is more comfortable and less alarming and how a normal baby would be. Susan finds it interesting that Cohen can get up on all fours and try to crawl but he isn't able to sit up. He can't sit up because he doesn't have very good core muscles (he needs to work on his six pack!) because he is always in the extended position. Because he is in that position, he gets stressed and moves around way too much to even think about being able to sit up. Get the picture? It all goes back to those things that seem so very basic, but that he just didn't get because of his prematurity.

After just 3 weeks of meeting with Susan, we have already seen some changes that we are pretty excited about. She has showed us how to play with Cohen and help him notice things like his hands and feet. I think I mentioned this before, but at one of his appointments Cohen grabbed his foot and put it to his mouth for the first time ever. I almost cried because it was just such a "normal" baby thing to do. Since then, he has been getting better about finding his feet on his own. I've even noticed when he lays on the floor that he has his legs flexed up now instead of just straight out all the time. We have also been doing a few things to help him learn to be more in the flexed position instead of extended. We have learned to play with him in ways that help him and we hold him in ways that teach him to not to always arch his back to get what he needs.

It is kind of hard because a lot of it means that we are sitting there with him for most of the time that he is playing, keeping him in a certain position, or keeping him interested in the close up instead of focusing on all the far away things. But, it has been so great to see little changes in him already! Danny and I were getting ready to eat dinner and we looked at each other and just commented on how calm Cohen was being. We were able to both eat dinner at the same time instead of one of us having to keep Cohen happy.

 In case you missed Cohen's project, you can see it here. So far we have 30 sets of diapers sponsored, but the goal is 100! Don't let Cohen down. Did you know that 1 in 8 babies are born prematurely and there are 13 million preemies each year!? We never imagined it would happen to us, but it did. Donating to the March of Dimes helps fund their research for treatment of preemies like Cohen and also research for how to prevent preterm labor. Thank you to those of you who have already donated, it really means a lot to us. And also, look where Cohen and the diapers showed up yesterday!