Saturday, March 31, 2012

Fess Up Friday

Thanks for all your support yesterday about my Mom of multiples post. I really appreciate all the acceptance and understanding! It's one of those things that I feel like I should have been a part of and yet I'm not sure where I really belong. And welcome to all the new readers from the link up. There were over 1100 people that visited the blog yesterday! Anyway, here's your Fess Up Friday since I know I've been slacking the last few weeks.

* We finally took the Christmas wreath off of our front door. And only because I knocked it off with a broom while I was sweeping the porch.

* Whenever I go to clean my house, I usually end up avoiding the obvious messes and doing something like cleaning my silverware drawer or organizing my socks


* Danny and I were talking while laying in bed and one of us said something and he told me he didn't believe me. I may have broken out in song with "Don't believe me? Ask the dishes! They can sing, they can dance...." (Name that Disney movie!)

* I ripped a huge hole in the knee of my favorite pajama pants. My mom cut them off and made them into shorts. This week I ripped a hole near the waistband. Sigh. I guess I've gotten my money's worth out of them, they were a gift in college. Maybe it's time to retire them? I don't want to make any hasty decisions I'm going to regret, so I'll give it a few days...

* While Danny were out on a "date", buying babyproofing stuff at Target, we bought Cohen an Easter outfit. And it cost more than $5.

* Sometimes I leave loads of laundry in the dryer for days (a week?) because I don't want to fold them and I know no one else will notice it there

* After my niece found negatives to an old roll of film, I had to explain to her that before digital cameras we had to use film and take them into the store to get them developed. It made me feel old!

* I may have giggled continuously when I went back to get Danny after he had his wisdom teeth out and the Dr. said he had a "manly case of the hiccups" after surgery. The lady giving me his instructions probably thought I was nuts...which is partly true. He's doing fine by the way, I've been making him stay in bed since he's going back to work Monday. 

* Yesterday I had jelly beans and chips for lunch followed by a milkshake for dinner. It wasn't my best idea ever.

And also, in case you didn't get a chance to see this video on our facebook page, I think it's worth watching.

Friday, March 30, 2012

Mom of Multiples

*This is a post I wrote last year for the link up to "Moms of Multiples". I'm going to link up again this year in case there are any other moms out there raising a surviving twin. And because I'm still a mom of multiples this year, although not in the same way as many of you*

I have never done this sort of thing before, but when I opened my google reader this morning, I saw a post on one of the blogs I read for a link up for "Moms of Multiples". At first I just sighed and closed my computer not even wanting to go and read the post. I went to take a shower and I just kept thinking, I am a mom of multiples dangit!

I don't have both my twins here with me, I don't get to put them in cute matching outfits, I'm not in the groups for moms of multiples, I don't know what it's like to have two babies screaming for attention at the same time...but I wish I did.

I am still a mom of multiples even though the only pictures I have of my boys together are ultrasound pictures. I still gave birth to two babies. Even though when people see me they don't know I had twins because I only have one baby physically with me, I still know I had twins.

Today, I'm going to be a mom of multiples and join in on this little link up. So there you go! I will try and put Fess Up Friday up tomorrow because today I'm being a mom of multiples :)



{Carter (Baby B) and Cohen (Baby A)}

Born together to grow apart, one in our hands and one in our hearts. I love you both very, very much!

Tuesday, March 27, 2012

The Blog

I've been thinking lately about what I want this blog to be. We started it as a journal for ourselves, never really thinking that anyone other than our families would be reading it. Even if everyone else moves on and stops reading, I want this to continue to be a place for our story for our family. But, it also has become a place for others to read about the life of having a preemie and also about life after losing a child.

We often hear from others that they feel like they know us or are invested in our story because they have been reading our blog. I have to say that if you would have asked me a year or two ago if I would have been putting my life, my joy and devastation, out there for the world to read, I would have laughed. I've never been a very good at sharing my feelings, I've been more of a deal with it myself and move on kind of girl. But, in light of recent events, there is no way that I could go through this without sharing my life and receiving the help of others.  I have met so many amazing people, some who have journeys similar to ours. Some who know what we are going through, and others who don't know but are a continued support and encouragement to us.

On occasion, I get nervous about posting things because I don't know what other people will think of me. I worry about people being offended or not understanding. But, this is my journey, and no two people's journeys are the same. I want to continue to be honest about our trials and celebrations. I know that people prefer to hear the happy over the sad, but I have to be true to our journey. I hope that this blog can continue to help you better understand what it's like to have a preemie and also the heartache of losing a child and the hope and miracles that can be found out of both.

If you, or someone you know, has lost a child or has a child in the NICU and wants someone to talk to, or you want to know how you can help them, please feel free to email me. I don't have all the answers, but I know how helpful for me it has been to have someone who knows what it's like.

Monday, March 26, 2012

Another Week

Another busy week here in the Kimmel household...

I drove my mom and sister to the airport yesterday, they are now in Hawaii for a week. I would be a liar if I didn't admit that I was a little jealous. I hope they have a blast though, they both deserve it so much.

Monday: WIC appt
Tues: Appt with pediatrician for weight check, was supposed to have a work meeting but got out of it because the only way I could have gone was with Cohen and he doesn't like work meetings.
Wed: Evaluation with OT
Thurs: NOTHING!!
Fri: Danny gets his wisdom teeth out

That's 4 trips to Bellingham in one week, yuck. And since both my main babysitters are gone for the week that means I get to take Cohen with me everywhere. Except for when Danny goes in for his teeth surgery, my SIL Christine is going to watch Cohen then. Also, I have my niece Michelle every day after school until her dad gets home which will actually be fun, she likes to help out with Cohen and hasn't really gotten to do that yet. Here's to hoping I don't forget anything I'm supposed to be doing! Say a little prayer for us this week...

And a few pictures from our weekend.

{60* shorts guy...I love his chubby little legs}




{Always on the go!}

Sunday, March 25, 2012

Sun Day

It's amazing what a little sunshine can do for the soul. It was a beautiful day here yesterday. Danny and I spent the morning at Target getting baby proofing supplies (Cohen's OT thinks he will be crawling in the next week or two!) Then we went to a park to scope it out for Cohen's birthday party. Nearly every single park shelter is already reserved for JUNE! We were hoping to do it outside at a park, and reserve a shelter in case of rain, you know, since there's a 90% chance even in June. Sigh.

Anyway, SUNSHINE! We spent the afternoon out on the lawn on a blanket. It was literally a breath of fresh air that I really needed. As I laid in the sun with Cohen and Danny, I just thought to myself...this is how life is supposed to be.







Here's to hoping for LOTS more sunshine! Here's where we were at this time last year...16 weeks along and getting a baby belly!

Friday, March 23, 2012

Parents of Preemies Day

We interrupt our regularly scheduled Fess Up Friday to celebrate Parents of Preemies Day...



I never in a million years thought I would be the parent of a preemie. I had read blogs and heard stories of miracle preemies born too soon. It looked difficult, but I could never even begin to imagine what all it entailed. It's hard, intense, emotional and so rewarding. When you have watched your child struggle for every breath and moment of life, it changes your perspective. There is a lot of worry and fear that comes with having a preemie, but there is also so much joy and celebration.


I never thought I would celebrate pee or poop so much. The first time we saw those drops of pee in Cohen's teeny catheter, we practically jumped up and down. In Cohen's first few days of life, when he was in kidney failure, Danny would wander down to the NICU and check how much pee Cohen had made. In a time of great uncertainty and fear, this was the only thing we could wrap our heads around. We didn't even know what to make of our 1 lb 8 oz baby boy, his ventilator, his numerous lines and cords, and his mostly covered little face. All we could grasp was that he was very sick and he needed to pee. So pray for pee we did! Grampa made the nurses laugh by doing a pee dance and Gramma brought a peppermint in to inspire him to pee (apparently it's what they use to make kids go?). It seems silly now that we were so focused on that one aspect when everything was so serious and overwhelming. But, as a parent of a preemie...that's what you do. You have to find something to focus on and keep you going. You have to have hope and you celebrate even the tiniest of things.

When you see your children born 15 weeks early, eyes still fused closed, paper thin wrinkly skin, and the tiniest little body parts you (probably can't) imagine...it almost doesn't seem real. But there they are, fully formed but just much, much smaller. It's amazing really.

I can remember the exact moment when I realized that Cohen was going to live. It wasn't until he was around 2 months old and I really just hadn't even allowed myself to really accept or believe that he wasn't going to die until that moment. We sat helplessly by as our little boy struggled with one thing after another. And then, finally, finally I believed that he was going to make it. I called my friend Ciera (I don't know if you even remember telling me this) but she said, "It's an amazing feeling when you realize they are going to live". And it was. I just felt like this weight had been lifted off my shoulders and I could finally breathe. I could finally let myself really love this little boy without the fear that he was going to be taken away from me. I allowed myself to dream about what could be for our son.

Our love for Cohen continues to grow and grow. We love him more than we ever knew we could love anybody. The trials we have been through have opened our eyes even more to how blessed we are to have him. We are thankful for his fighting, driven personality. On the days where I just want him to hold still and quit growing up so fast, I just remember everything that he has been through. God knew he would need this personality to fight all the odds stacked against him. Someday when he is older and pushing all our buttons and testing his boundaries, we will try and remember this :)

Thank you again to all of our nurses and doctors for everything you did for us. Thank you for helping us keep our sanity during those long, long days of worry and fear. Thank you for helping us find joy in the middle of trials. And thank you to all of you who understand (or try to) why we keep Cohen inside, why we ask you to wash your hands, why we cancel plans if you feel like you are getting sick, and for understanding why we are cautious with him. Thank you for asking how he is doing and for trying to understand what he has been through.

Today we are celebrating our preemies! We are so, so thankful for both our boys. In case you missed their videos or want to watch them again, Carter's is here and Cohen's is here. They both still make me cry every time I watch them.


Go find a preemie or a parent of a preemie today and give them a hug. Thanks for celebrating with us!


Thursday, March 22, 2012

Family

You may have started to gather this from reading the blog, but I have a really amazing family. I have 3 brothers, a sister, a brother in law, a sister in law, a niece and 3 nephews. We are far from perfect, but we are there for each other. Our families have gathered around us and supported us in so many ways over this last year. 

My family was so excited about adding twins to the mix of cousins. We were so excited to be adding two little members to the family. When I took the pictures over to Karen's we just started talking about showers and what we would do with two babies and how much fun it was going to be. When I took them to my sister in law Christine's, she immediately took the ultrasound pictures and photocopied them for her fridge. My mom framed the ultrasound picture and put a "2" on the frame. We were all so happy.

My mom came to many of my ultrasounds with me, both when the boys were healthy, and after we found out that we were having problems. She was in the room the day we found out that I was being sent to the hospital. I just remember the silence in the room that day as we all sat wondering what was going to happen to our boys.

We went home to pack up a few things and I just went straight to my bed, layed down, and cried. As Danny was packing, my mom brought me a snack to eat as she knew that I would fall even more apart if I didn't eat before the long drive ahead of us. Danny and my mom were my rocks those next few weeks as I sat in the hospital, full of fear, but trying to hope for the best.

The night we found out that it was time for the boys to be born, I called my mom right away. She picked up Karen and they drove down, probably speeding a little bit. They were waiting in my room as I was wheeled in holding Carter. My mom told my sister just to take lots of pictures of us, and if I asked for them someday, they would be there. And Karen did just that, and we are so thankful to have a few extra pictures of our baby. Mom took Carter and wrapped him up in a blanket from home and we all just sat and cried and talked. We talked about how perfect he was, how long his toes were, and who he looked like. We just couldn't believe he was gone. Danny, Karen, and Mom also got to go and see Cohen, even before I did.



Karen and Mom drove home that night. The next day my Dad came to the hospital and he got to hold Carter, too. I am so, so thankful that some of my family got to hold him, I wish they all could have. I'm glad they got to see how perfect and tiny he was. That he was a real person. My parents got a hotel near the hospital and switched off staying near us to help out. My Dad would go out and find us food while we were still staying in the hospital. They set up our room at "the home" for us to stay in after I was discharged. One night he even walked to Trader Joe's and got us a little feast of frozen dinners and ice cream that we ate at the hospital. My parents made all of the arrangements for Carter, which I am so thankful for. I'm not sure I would have had the strength. I know that's something that no grandparents should ever have to do, but if we couldn't do it ourselves than there is no one else I would rather have do it. I know it was heartbreaking for them and took a lot of courage and strength.



After Danny had to go back to work, my mom and Danny would rotate coming down to stay with me. I wasn't strong or brave enough to be left alone, and they were always by my side. Sleeping on hard as rock twin beds in an old dorm room with a mini fridge. I am so glad that they were there, I could never have done it without my mom being there when Danny wasn't. She was constantly bringing me glasses of water or drinks (since I was trying to pump for Cohen). She would make us real meals in the community kitchen at the home. She would agree to eat ice cream for dinner. She learned how to ride the bus to get back and forth to the hospital. She held me when I cried and told me to keep going when I told her I just didn't think I could do it anymore. She is the reason I actually had clean clothes to wear as she washed countless loads of my (and Cohen's) laundry. Once we were able to hold Cohen she would go in early in the morning and hold him for hours so that I felt like I could have a little break in the mornings and feel like I could take my time without leaving Cohen alone. When Danny and I were both at home sick, she went down to the hospital to be with Cohen. She brought lots of treats for the nurses and staff.


Karen also came to stay with me when my mom or Danny wasn't available. She was the first one besides Danny or I to hold Cohen! I have her to thank for many cute pictures of Cohen. She, too, sat many hours in the NICU with me, keeping me company. Our families celebrated all of Cohen's milestones with us, big or small.



When it was finally time for Cohen to come home, Mom and Karen went and decorated the house. They hung up pictures of Cohen and added some decorations to Cohen's unfinished room. There were decorations on the front lawn and balloons around the house to come home to. It meant a lot to me that they took the time to make that day a celebration for us and that we have those as positive memories. I will never forget driving down our road to see them out on the sidewalk waiting for our arrival.



I will never be able to express in words what my family has meant to me, especially over the last year. I know they have felt our loss deeply, as it was their loss too. I know they grieve not getting to have twins in the family. I know it was hard for them to have to explain to their children that their cousin wouldn't be coming home. I have heard of other families who push their loved ones to move on. I have never once felt that from any member of our families and I am so thankful. No one in our families has tried to brush it under the rug or pretend like it didn't happen and that means the world to us to have our son acknowledged in the way he has been.

So, thank you to my family for picking me back up when I didn't have the strength. Thank you for loving Cohen and Carter. Thank you for loving us as we are. We love you all so, so much and we are very blessed to have all of you.

Wednesday, March 21, 2012

Healing

While talking with my therapist, she was telling me how I am in a sort of rehab. Like if someone is preparing for surgery and they know they are going to have to do exercise etc and slowly gain back their strength to be able to heal.

I told her that what it was more like going into surgery to have carpal tunnel surgery and waking up to find that they cut both your legs off. Something you thought was going to make your life better and cause you less pain and bring you joy at the things you will be able to do actually turns out to be a huge loss and you are devastated. Instead of having an easy surgery that will bring good results, you are learning to live a whole new life while missing a part of yourself and you will never be the same. And you certainly weren't prepared to live your life like this. What seems to be routine for so many other people turned out horribly for you.


Don't get me wrong, I am SO thankful for Cohen. If you read here much hopefully you know how in love with him we are. I think sometimes people feel like even though we lost a child, we still have one and that somehow balances it out. It doesn't. I still lost my son. We know that it could have turned out worse and that we could have lost both boys. We don't need to be reminded of that.

My therapist usually makes me feel better because she acknowledges that our losses have been huge. She helped me to understand that I'm not only grieving the loss of one thing, I'm grieving the loss of many...my child, my normal pregnancy, my twins, my job, my dreams, my life as I once knew it. I know that in the long run, not all of these things will turn out to be bad, but I am in my rehab healing and trying to figure out how to get back to a place where I am happy. I want to be happy, I really do. And I know it will come some day. Of course I have days and moments where I am happy, but I want to feel happy overall. My job for the week is to tell myself that "it won't always be like this".

Tuesday, March 20, 2012

2012 Goals Check-Up

Well, I thought I would take a little look and see how I am doing with my goals 3 months out...

1. To continue to share our story, on this blog, and with people that I meet. Our story has brought us in contact with some really great people that we wouldn't have met otherwise. I feel like something good will come out of this, in time, and hopefully letting other people share in our journey is helping someone, somewhere.



Still blogging, so still sharing our story that way. We continue to meet people in our community and in the online community that we have been sharing our story with.

2. Continue to see God working in our lives. He has brought us through so much and we continue to have hope in him that he will see us through whatever is next for us.

I know that God continues to work in our lives. He has been preparing and paving the way for us long, long ago before we were even born. We don't know what is next yet, but we will keep looking to see what God has in store for us.

3. Money. Sigh. We are SO thankful for all of you who have chosen to help our family financially. Honestly, we would be bankrupt if God hadn't taken care of us the way that he has. We have gone from a two full time income household, to one and a little, tiny bit. Thankfully, we have two cars that are paid off. They aren't pretty, but they are ours. When we bought a house we set the price for what we wanted and then found a house whose price just happened to be lowered that day to something less than what we had planned. We are thankful now for those house payments instead of the ones we would have been making on a more expensive house. We tried to put Cohen on both of our insurances and it just wasn't working out. And so we had to pick a different option, and thankfully, it covers
all of Cohen's medical bills. It's not what we had planned, but it has been a blessing in disguise. The reality of that hit when we got an $890,0000 bill in the mail. And that was just ONE of them (and he is worth every penny!) and doesn't include Carter's or my own bills. I'm telling you this because God has provided for us in huge ways through circumstances and also through some generous family, friends, and even strangers. Our goal is to take care of this money as best we can. This year our prayer is that we will be good stewards of what we have.
We have put ourselves on a budget using the envelope system. We have only been doing it for 2 months so we are still getting used to it. It's so easy to swipe that debit card and not really think about it, but when you have cash in your hand and you see how fast it goes...it makes you think a little more about whether you really need something.

4. This kind of goes along with the above and we will see how this one goes. I have been trying to practice this a little bit already, but I really want to give this a try for the whole year. I am not buying Cohen any clothes over $5. We have been giving some of Cohen's clothes that he has outgrown away and taking some to the local consignment store. I have found that I can get some nice clothes there, some still with tags, for a very reasonable price. At this age Cohen goes through clothes so fast that I'm not sure I can justify spending a lot on brand new clothes. I will probably make a few exceptions, like a "birthday boy" shirt on his birthday or if there is other special occasions. But I am going to really try to do this all year. So if you have any boy clothes you want to get rid of...I know a very cute boy who would wear them

I am happy to say that this has probably been my most successful goal! :) We have been given some hand-me-downs which have been a huge help. I think the only thing I have spent more than $5 on has been plain white onesies. It's hard to find them at the consignment store, probably because they don't stay white for very long. So, I bought a pack of onesies...although I guess if you count the price individually, they are under $5 each!

5. I mentioned my Project Life album earlier and that is something that I really want to keep on top of this year. I think it will be really neat to look back at our year this way.

Started out well, now I'm way behind...like  back in January. Gotta jump back on the wagon with this.

6. Clean out our extra room. Ugh. It started out as my craft/sewing room and has now become a junk room. Things we haven't had time to deal with or organize end up in there or in the garage. So my goal this year is to clean it out and organize it.

Yeah, this hasn't happened. I need a professional organizer.

7. To keep perspective. Losing a baby changes you. Having a baby sick and in the hospital changes you. It changes the way you view things and what you make important in your life. One of my personal goals is to try and continue to focus on what is important and let the rest go. Sometimes I have high expectations of myself and I get frustrated if things aren't done how I think they should be or when they should be. But, there are things in life that matter, and there are things that don't. There are things that are worth my time (Jesus, family, friends) and there are things that aren't (getting grumpy about long lines at the grocery store, the house not being spotless etc.)

Well, this is kind of hit or miss. Sometimes I just really don't have the energy for other people's drama, but sometimes it is a nice break from my own.

8. To give back. We have been given so much and we want to continue to pass it on however we can. We aren't sure what that will look like yet, maybe another project like the stockings. We will see...

Finding little projects to work on is a nice distraction for me. It is also really healing for me to work on things that I know are going to hopefully help another family. We have another NICU Care Package project in the works. I also have about 200 diapers to make to donate to local hospitals (St. Joe's, UW, and a local NILMDTS photographer) who have expressed interest in teeny, tiny cloth diapers for babies that have passed away. I have been working with this wonderful family who started this idea. The little diapers are handmade and given to hospitals. Families are given a set of diapers, one for the baby and one for the family as a keepsake. There are two sizes, tiny (up to 34 weeks) and tinier (as small as 20 weeks).

9. Oh, and to eat more vegetables. 

I don't want to talk about it. 

It's good to look back and see how I'm doing and remind myself of what I wanted out of this year. I'm off to work on those diapers!

Monday, March 19, 2012

A Busy Weekend

We had a pretty busy weekend around here...

On Friday, Cohen and I drove to Oak Harbor to see our NICU friends Ciera and Eli. Cohen and Eli got some play time (well, more like Cohen played with Eli's toys while he napped). It was so fun to see them and for us moms to get to chat, too. Eli is exactly one month older than Cohen, but Cohen's got a little on him in the weight department. These little boys (and Cohen's friend Isaiah, who he also saw last week) continue to amaze me. They have come so far and it's so fun to see their progress. (Pictures from Ciera)

{NICU Roomies reunite!}


Friday evening our friends Andy and Tamara came up to stay with us for the weekend. Saturday we slept in, had pizza for lunch, went for a quick walk between rain/hail showers, and then I went to a roller derby that one of my friends was in. Andy and Tamara headed to Bellingham for St. Patty's day festivities while Danny and Cohen stayed home to play.



Sunday morning Danny made waffles for us and we hung out and watched basketball. For some reason, I was completely exhausted and ended up going back to bed! Then we cleaned the house and cars a little while Cohen played in the garage in his walker. Cohen's two bottom teeth have broken through and he seems to be a little less fussy. This week is pretty slow, but then next week we have a bunch of appointments and such.

 {Dude, it's okay, I get a little hangry sometimes too}

In case you missed our conversation about The Hunger Games, check it out and feel free to leave input whether you liked it or not and what you think about kids reading it.

Saturday, March 17, 2012

Hunger Games

Okay, I don't know why this has been bugging me so much, but it has. Last week I bought "The Hunger Games" and read it in one day. I'm not exactly sure why I thought it was a good idea.

If you haven't read it, basically it's like Survivor, except with kids and that they have to kill each other to win. A group of kids aged 12-18 are put into an area and the last one alive wins. And it's all on live television to their villages.

I know there is a ton of hype around the book and movie and so many people seem to love it. But, I don't get it. Maybe it's the topic of death is just too fresh for me. I finished the book feeling disturbed. The idea of an author using the death of children as entertainment leaves me very unsettled. I know, I may be overreacting a little, but it just really troubled me. And so many people let their kids read it, too. And they are buying tickets for a midnight showing to go see the movie the day it comes out. I don't know about you, but there doesn't seem like anything worse than going to see a movie where children are put in an arena to fight each other to the death. I just don't think I could stomach it. And also, this just seems like a "let's imitate this" situation waiting to happen. I know there are (obviously) tons of people who loved the series. Maybe someone can explain to me what I'm missing? If you read it, what did you think? Did you let your kids read it?

Friday, March 16, 2012

Fess Up Friday

Here we go again! People seem to like Fess Up Friday posts. I can't figure out if it's because a lot of ridiculous things happen to us, or because they happen to everyone but nobody likes to admit it....either way, here you go:

* One night I (apparently) woke up to Danny's alarm and was waving my phone around telling him repeatedly to turn it off. Another night I (apparently) woke up and yelled "What IS that?!" when his alarm went off. I have no recollection of any of this so I can't tell you whether it's actually true or not

* One morning while playing with Cohen I went to open the curtains and the curtain rod came apart and I was standing there holding the one middle end with the curtain on it. Cohen was playing in his exersaucer right under me and I was worried about letting go and having to explain a large gash in his head when it fell on him. So, I did what any good mom would do. "DANNY! GET UP!" He slowly made his way out to where I was standing and I handed him the curtain rod to put back together since I couldn't reach it. Then I proceeded to tell him that since he was up now, I was going to take a shower.

* I am that person who watches The Biggest Loser while eating ice cream

* I drove through the Starbucks drive thru on my way to work and realized I had no wallet. I later found it in Cohen's diaper bag that I had sent to his Gramma's with him. Thankfully, there was a kind soul at Starbucks that gave me my coffee anyway (THANK YOU!!!)

* Sometimes I feel like I have way too many things to confess.

p.s. Some of you have left me questions in the comments lately and I usually try to go through and answer them, so you can check back for the answer. Or you can ask on our facebook page and then I will know you got the answer!

Thursday, March 15, 2012

Surprise Visit

Today we got a little surprise visitor! I heard a knock on the door and hesitantly went to see what who it was, since I was still in my pajamas. It was my long lost little (big) brother!!!

He goes to school at Gonzaga and is majoring in engineering, he is quite busy being a genius so we don't see him too often. Have I mentioned he's a genius? He's going to build Quantum computers at UC Santa  Barbara this summer. I don't really know what that means, but I think it has something to do with robots. He will tell you it doesn't, but I think it does.

Anyway, it was good to see you Uncle Johnny, we love you!!


Tuesday, March 13, 2012

Little Trickster

Apparently, the young master has had a few tricks up his sleeve lately.

Yesterday, I went in to get a diaper out of Cohen's room while he was playing on the floor. When I came out he was up on his knees in the crawling position!

While Cohen's OT was here yesterday, we were trying to get him to say "Mama" which was a no go. Then I was talking to him and apparently we must say "hey" a lot to him because when I said it, he said it too! We'll get him to do it a few more times and then maybe we'll call it his first word.

And, last but not least...Cohen is getting a tooth. I can't believe my little baby is old enough to have a tooth. We can't actually see it yet, but we can feel it. It explains the drooling, rosy cheeks, crankiness and poor eating the last few days. We'll see how long it takes to come through. My boy is getting a tooth! For some reason, this just seems like such a "big boy" thing to me. This little boy, who used to lay on my chest and I could cover his little less than 2 lb body with my hands, who was born so early his eyes were still fused shut, this boy who was so small that his Gramma's wedding ring fit on his arm. Sigh. There was a time when all I wanted was for him to grow, grow, grow and now I want him to stop! I just want to freeze time and keep him as my snuggly little baby. But, we do love to see him grow and learn new things every day.

{Sleepy boy}
 

Also, Cohen has an evaluation with the OT for his sensory issues at the end of this month. We don't anticipate that she will tell us anything we don't already know as far as whether or not he has sensory problems. It's been pretty clear that he is very sensitive to sensory input...he seeks out movement, toys, lights, playing, anything he can touch and feel. He tends to be oversensitive in the sight (hates bright lights like when we go outside) and hearing aspects (jumps at quiet noises) Honestly, we don't care if there is an official diagnosis or not, we just want to be able to know how to help Cohen.  So we are actually looking forward to this appointment.

Between teething and an angry looking diaper rash, we are spending lots of time napping and going diaper-less today (and doing lots of laundry).

 {Check out those eyelashes...anyone who sees him comments on them!}

Monday, March 12, 2012

Monday, Monday

Well, we survived our first little Cohen scare. Yesterday evening we had just gotten Cohen out of the bath when he started wheezing really bad and breathing hard. We watched him for a few minutes and even put his oxygen on just in case. He stopped wheezing after a few minutes, but he continued to breathe harder and faster than normal. We called our pediatrician's office who connected us to Children's who has an advice nurse. We told her what had happened and she strongly suggested we take him in to the ER.

We debated back and forth for awhile and decided better safe than sorry. We continued to go back and forth on our way and even stopped the car at one point. He seemed to be fine at that point, but there was still this fear in the back of our minds. We were 80% sure he was fine, but that little "what if?" was still there. He had been coughing a little that morning so we thought maybe he was getting sick.

I had told Danny before we left that the only way I was taking him in was if one of us waited in the car with him until it was actually his turn to go back. I went and checked in at the front desk and explained that my son was waiting in the car because he was a preemie and we didn't want him picking anything up in the ER, she gave her best "ok, idiot" look like I was from another planet. However, I am glad we made that decision because the ER lobby was packed and as I sat and listened to all grown ups and kids coughing and hacking, I was glad he was out in the car.

Eventually, the triage nurse called us back and got some vital signs on him. His O2 sat was 99%, which in itself was reassuring. While waiting for a room we found a back nook to hide in and kept Cohen mostly covered. He was having the time of his life and didn't close his eyes for a second even though it was way past his bedtime. We took him back for a chest xray so they could see his lungs. The main two things I wanted out of taking him in were an O2 sat and a chest xray, both of which we got.

They put us in a room and before long the doctor came in. He said the radiologist had read the xray and that he thought Cohen had bronchiolitis (inflammation in the little air passages in the lungs). I asked him to be sure and look at Cohen's baseline xray that his pulmonologist had suggested we get. We were indeed thankful for this as he said when he compared the two they were mostly the same and that Cohen's baseline is still basically "crappy lungs". They also did an RSV swab which came back negative! The only time Cohen closed his peepers was the 20 minutes between the swab and waiting for the results. We headed home 4 hours later, relieved. We figured this would be the outcome, but we are still glad we took him in as it put our minds at ease and we are so thankful that it seems to be nothing. Please continue to keep us in your prayers as RSV season continues through next month! We are almost there.

{Get me out of here!}

Saturday, March 10, 2012

Friday, March 9, 2012

Fess Up Friday - Cohen Edition

Hi everybody,
My mom said I could post the confessions this week!









P.S. My super cool auntie took all of these pictures!

Thursday, March 8, 2012

Hard to Describe...

I have been struggling to put into words my thoughts about how things are right now. And then I found this quote from the book I am still reading my way through...

"I also feel the emptiness that comes after having faced a challenge or danger that is now apparently past. I have heard of Vietnam veterans who felt a profound letdown after returning home. They missed the keen concentration that was required of them to survive in combat. Though the war was horrible to them, it nevertheless forced them to use their senses and energy in a way that made them feel intensely alive. Likewise, I worked long and hard to survive loss, and I now feel less energetic and focused than I used to, although no less contented...Still, I strangely miss the awareness and vitality I felt when I had to invest so much of myself into facing darkness, finding meaning in the loss, and affirming life in the midst of death"   (A Grace Disguised, by Jerry Sittser)

Since coming home and finally starting to settle back into our life, I have just felt so...displaced. When Cohen was in the NICU, we were so focused on fighting that battle. I had to be strong for him. I needed to go to the NICU every day. We threw ourselves into catching the bus to the hospital, finding food, sitting for hours on end with Cohen, driving back and forth from home to Seattle. I don't regret any of it, and I believe that's where we needed to be at that time. Even though it was hard, we had something to focus on. I previously described that time as one where I knew I had to keep moving, I had to keep going or I would fall down and never get back up. Now, I feel like a fish out of water trying to figure out now what?

And I don't know what the answer is. I felt like things were so much clearer in the midst of the intense trials we were going through. It felt like there was more black and white and less grey area, if that makes sense at all. I was either at home or the hospital. Cohen had a good day or a bad day. I was with Cohen or I wasn't. I was crying for Cohen or I was crying for Carter. I knew God was in control or I didn't. I was with family or I was alone.

Now, things seem more complicated. I couldn't really put my finger on why exactly, but after I read that I felt like it really described what I was feeling. Now that we aren't in the midst of "battle" or in survival mode, it's hard to know where to focus my energy...or lack of energy. And less focused is exactly how I feel. I'm having a harder time finding meaning in this. I still trust God, but I don't feel his presence as intensely as I did, which is my fault for not seeking him. It's easy to rely on God when he is the only thing you have. It's so easy to fall back into that "I can handle it" mode. Which, obviously, I can't.

Today, I am thankful that God knows every single one of my thoughts. He knows my confusion and hurt. He knows my joy and gives me hope. I am thankful that God is bigger than anything I have or ever will go through. I am thankful that he can handle all of my emotions and thoughts. My life is not a surprise to him, he knew from before I was born what I would go through and he has gone before me and will go with me.

"O Lord, you have searched me and you know me. You know when I sit and when I rise: you perceive my thoughts from afar....You hem me in - behind and before; you have laid your hand upon me...Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your hand will hold me fast."
Psalm 139:1-10

Wednesday, March 7, 2012

Carter,

You would have been 9 months old this week. Has it really been 9 months since we held you in our arms? In some ways, it feels like it was just yesterday. The pain is still so real. In some ways it feels like it has been years since we got to see you for the first and last time.

We wonder who you would be today. Would you be the calm to your brother's crazy? Would you be our picky eater or would you love eating like Cohen? Would you have a dimple on your right cheek to match his? Would you have fought over toys, or played nicely together? Would you be a good sleeper at night? What would your favorite toys be?

Some days we are so blessed to have a constant reminder of you in Cohen.  And some days it is so painful to see Cohen and to not see you there with him. There were so many days were I sat rocking Cohen in the NICU wishing I could have you in my other arm. It just didn't feel right.

Some days I wish I could go back to the days before you boys were born. I would complain less about the constant monitoring, no matter how uncomfortable I was. I would go back to those days in a heartbeat because it meant that you were still alive.

Some days I dream about going back to when you were born. It feels like if I could just hold you one more time, for a few more minutes that it would somehow ease my pain. If I could just see your face just once more.  But, I know that no matter how many more minutes or hours I got to hold you, it would never be enough. I would always be left wanting more. More moments to carry you with your brother, more days to hold you, more time to take you in, more days to see you grow. Even if I could go back and do the things I regret not doing, it wouldn't make it any easier. You still wouldn't be here, and that is all I really want. For you to be here with your mom and dad, your grandparents, aunties, uncles, and cousins. We all miss you so, so much. We hold on to the hope that we will see you again someday.
Love, Mom

Tuesday, March 6, 2012

9 Months

 Happy 9 month birthday, Cohen (yesterday!).

At 9 months:

* You are wearing 9-12 month clothes

* You weigh 15 lbs 4 oz

* Eat just about anything we put in front of you: peaches, green beans, peas, rice cereal, applesauce, mum mums, bananas. If it goes on a spoon, you will eat it. The only thing we've found that you don't like is avocado.

* Still mostly sleep through the night, although we have had to go back to swaddling you

* Really, really want to crawl. As of yesterday you started scooting backwards a little bit

* Are a little less serious, and a little more smiley

* You watch our faces so closely when we talk to you and you move your little mouth like you want to say something back but it won't come out

* You get cuter every day!

Monday, March 5, 2012

Love/Hate

I have a love hate relationship with the internet.

I hate the internet because it wastes my time. Or rather, I waste my time on it. It's so easy to hop on facebook or start reading other blogs and before I know it half an hour or sometimes an hour (after Cohen is in bed) has gone by. It's so easy for me to do because I don't have to think. I can just do it so easily. Pinterest, facebook, etsy, blogs, they just suck my time.

I also love the internet. It has connected me to so many people that I never would have "met" otherwise. It allows me to communicate with people who know how I feel. I can join a support group for parents who have lost a twin and I can see that other people in our situation have very similar thoughts and feelings as I do. I can give and get support because of the internet. It also makes me realize that there are people out there like me. Some days it feels like the internet is my only connection to the outside world.

The internet has also allowed me to share our story. It has let me honestly share our grief journey and our NICU journey. We will hopefully be able to help others in a similar situation and bring awareness  about families that have lost children or have preemies. We have received thoughts and prayers from people who have heard of our story from this blog. We have felt an incredible amount of support because of the internet. I guess I'll keep it around.

Thanks for sharing in our journey as we stumble our way through.

And also, I know how much you all hate leaving comments, but go check out my sister's blog. She's having a rough day (which I know all about) and could use some love. AND she's giving away chocolate and Starbucks!! What could be better!? :)

Saturday, March 3, 2012

Proof

I know many of you are wondering (because some of you have asked) if Cohen ever smiles. He does! Usually, he is so busy concentrating on what he is doing that we don't always catch his smile in pictures. The other reason that someone told me he doesn't smile that often is because his cheeks are so big that it's too hard. So, here's your proof. Some smiley pictures for Saturday!

{Doesn't he look so content? This is how we swaddle him for naps or when he gets too excited}

 
 {This is the look we usually get, "Aw mom, can't I just play in peace?}






Isn't he cute?? Sorry for holding out on the smiling pictures. He's generally a pretty happy little fellow and he DOES smile. Now you know! 

And in case you need more Cohen in your life, check out our facebook page.

Friday, March 2, 2012

Fess Up Friday

* I may have been slightly offended when Danny said "I need a bigger wife" after I asked him to get something for me because I still couldn't reach what I wanted even though I was standing on a stool

* I sometimes call our cat "Cohen" and sometimes call our son "Russell". Oops.

* While on our trip to Leavenworth, Danny told one of his friends that his favorite author was Sandra Boynton, the author of "Moo, Baa, La La La", "But Not the Hippopotamus", "Perfect Piggies" and "The Going to Bed Book"

* I just struggled a LOT spelling "Hippopotamus" 

* We are on a new budget and we each get a small amount of spending money, Danny spends his on Jack in the Box and I spend mine on scones. We are so hard to please.

*We may have given Cohen a jo-jo to eat. He may have LOVED it. He lunged for the box, we put one in his hands, he threw his feet up on the table, and chomped away. (Don't worry, he only ate the squishy part of the potato and then we took the rest away)

*We took Cohen to Safeway for the first time ever and I spent more time taking pictures of him than actually getting groceries. Pretty sure the people around us thought I was crazy, but for us it was a big step!!

* Once when I was young I connected the dots on our wallpaper with an ink pen, signed my name on it, and claimed it wasn't me. (In case you never figured it out mom, it was me...I feel so much better now having that off my chest!)

 {Nom, Nom, Nom...with his feet on the table. Time to work on manners!}

{It's hard to get a picture of him holding still and a good facial expression :)}

{Cute boy in his cute jammies}