Cohen's First 5K!

Cohen finished his first 5k this weekend. He has always loved to walk and walk (and walk and walk and walk). Maybe it has to do with the fact that we have gone on walks since pretty much the day we brought him home from the NICU because we needed out. Or maybe it's that he likes to walk and look at everything around him and check it alllll out. Either way, I think it's calming and a good outlet for him. 

His Gramma signed them up to do a local fun run/walk. Every day he would ask if Gramma was coming to get him for his "big walk". We fed him an extra big breakfast and sent him on his way with Gramma, his auntie and cousin Jordan. He made it the whole way with only one short piggyback from Gramma and even did some running at the beginning! Pretty proud of all that this guy has been up to this month!! 

Picture Drawings

It seems like Cohen has been learning so many new skills lately. One day, he could put on his own shoes! And with a little work, his socks too! He can write his name and recognizes all the letters of the alphabet and numbers 1-20. He hasn't been much of a drawer up until recently. He drew this today and I couldn't help but be so proud! Cohen is getting to be so grown up!

It's our house, with me outside, a sun and a cloud.

Eye Exam Day

Pretty proud of this fellow who went in for his eye exam today. I promised him NO drops because of our last experience and when he was doing so well, we decided to do the drops. He handled it like a champ! AND he has perfect vision and no scarring or damage from his ROP as a baby (common preemie eye problem). Such a better experience than last time!!

A Hiking We Will Go!

We normally try to go hiking a few times over the summer but just didn't get around to it until today. Cohen starts preschool again this week so we decided to embrace our last day off. Cohen loves adventuring and hiking. Ezra has always been little enough to carry in the hiking backpack but we decided to let him tromp around on his own today. Obviously, it wasn't a difficult hike but the boys loved it and it was so great to get up to the mountains!

Ezra is big into the 2 year old "me do it" phase. He loved climbing all the big rocks by himself and then jumping off just as many other ones.

Oddly enough, for someone who has long struggled with balance and physical motor skills, Cohen is in his element when he's hiking and exploring. For some reason, he seems to be so much more coordinated and climbs rocks and goes over uneven ground without much trouble. It's so great to see. We joked today how awesome it would be if our "wimpy white boy" who spent two months on a ventilator, spent 8 months of his life on oxygen, and was supposed to have "crappy lungs" became a mountain climber! (Well, we know he has already climbed so.many.mountains. but you know, actual physical mountains someday)

(This post will be a little vague. I'm fine with that as we are still digesting a few things. And maybe I'm just not ready to say the words "out loud" yet.) 

I've started to write this post a few times, but it just wasn't happening. We recently found out that Cohen will have some life long challenges in certain areas of his life. It's not the news we were hoping for, but wasn't completely unexpected. It is an answer that we needed, for ourselves as his parents, and to better understand how to help Cohen be the best Cohen he can be.

I've spent a lot of days in tears. I've spent brief moments in the why him area. Thinking about all that he's been through and then to have this on top sometimes just seems unfair. My heart has been heavy for him and what this might mean for his life. But we also know that he as overcome lots of challenges in his life and this probably won't be the last of them.

Having a new diagnosis isn't easy. It's not the "he'll grow out of it, he just needs more time" answer we were still holding out for. No parent wants their child to struggle or to have things be more difficult for them or be seen as "different". It hurts our hearts as parents to know that Cohen will continue to have challenges, but we also know that it doesn't change who Cohen is. Adding a new word to the chart doesn't change his heart, his smile, his love for trains and ramps and dirt. If anything, it changes who we are and gives us more understanding and better resources.

He has faced so many challenges already. The doctors at his appointments mentioned several time that he is resilient, which we absolutely know to be true. We know he isn't one to give up or quit fighting and that he always does things his own way, in his own time. We know that this won't be anything different and that we love him for who he is and we will always fight for him and with him.

Cohen - 3.5

If I'm in denial that Ezra is almost two, I'm definitely in denial that this guy is almost FOUR!

 My little hero.  He is growing so much. Like (literally) leaps and bounds. Getting more steady on his feet and more confidence in his heart. Always up for adventure.
 
He loves preschool and riding the bus. He loves hanging out with his Auntie and playing with his cousins. Whenever we go somewhere he says "Are my cousins going to be there?". He also loves pushing his shopping cart(s) around, trains and cars. Nearly every day I find our front door mat over the transition from the hardwoods to the carpet in his room and it's the "ramp" for his cars/shopping cart/trains. He also likes to connect and hang things across the house, which we have tried to limit to his room because otherwise the house turns into quite the obstacle course. It's so interesting to see his little mind working to make things happen and then carrying them out.

He is our Mr. Literal and just wants to know about everything about everything. "How does it work? Why does it do that? But why? But why? But why...." One day he was very persistently asking the same question over and over and I said told him to drop it. He said "But Mommy, I don't have anything to drop!" Oh dear...Always keeps us on our toes!

We've been a little quieter in this busy season in our lives. We are facing some of the realities of a preemie who hasn't "caught up by two". I can't tell you how many times we heard that preemies catch up by two. That "this will all be in the past". The NICU journey is in the past, but we are still dealing with the effects of Cohen's prematurity in his life. The reality of it can sometimes hit pretty hard, but we do our best to focus on the journey and how far we've come.

We are still asking some questions and waiting for some answers, but we know that we are working to do whatever we think is best for Cohen. Right now this means lots of appointments and therapy and preschool. We are working to learn more about his needs and how we can meet those needs to give him the best chance to reach his full potential. It's been talking to a lot of different people and facing some struggles. But we love this guy with all our hearts and will do whatever it takes to help him be his best, whatever that looks like.

Our little buddy is determined and happy and always keeps us on our toes. He has always done things in his own time and in his own way. He always makes us laugh with the things he says and we love seeing him grow and change every day. 

Cohen Goes to School!

Cohen started preschool a few weeks ago and so far I think it's going well. When I ask him what he did at preschool he generally says "nofing". He goes Monday, Wed and every other Friday.

 He didn't shed a single tear, which I expected, and I held it together until I got in the car. I had to work that day and Danny was off so we were both able to drop him off and then I went off to work. I may have cried the whole way in. We are so proud of this kid.

Last week he even got to start riding the bus to school which I think was a dream come true for him. He was asking us constantly to ride the bus, so finally I told him it was time! We stood outside and waited for the bus and he got so excited when he saw it coming. There are only a couple other kids that ride the bus and the bus driver is pretty great. She had the music on and handed him a bucket of toys. Although now he keeps telling me he wants to ride the big bus (he rides the little bus to school).

Waiting for the bus!

Here it comes!

He seems to be doing well in school and he enjoys going. The transitions between school and home have been a bit challenging, but we were expecting that. I'm so happy for him because I think he really does enjoy it. One day I picked him up and he told me "Mommy you fogot to pack my snack but my fwiend shared a granola bar with me". He gets Physical Therapy at school once a week so I will be interested to hear how that goes as well!

3 Years at Home!

Happy Home-iversary Cohen! After 130 long, grueling days of ups and downs, we finally got to walk out the hospital doors with our son as OURS. Those last few weeks were tough, not some of my finest moments we wanted so badly to be out of the hospital to finally start our lives as a family. It felt like we were stealing Cohen as we packed up all his things, said goodbye to our best nurses who had become like family, took down all of his momentos and packed up our hotel room that had been our "home". We got home to find the house decorated by mom Carol and Karen, and Cohen's room decorated which was much needed since we had basically just up and left over 5 months before. It was bittersweet as we had left our house back in May, having the room set up to bring two babies home, but we were SO excited to bring Cohen in and show him his house (he was thrilled). Everything was exciting...his first diaper at home! His first bottle at home! His first nap at home! Danny and I were laughing the other night about how much easier it was to bring Cohen home, even with his oxygen and feeding tube, than Ezra. We already knew Cohen, he was 4.5 months old, we could just hook up his feeding pump at night and he never cried. (We should have known he was just storing it up for when he turned 3  ) Cohen James, we love you so much little buddy! You amaze us, challenge us, and make us better people. We are so very thankful for you and can't wait to see what God has in store for you!

P is for Preschool

Cohen is going to preschool.

I have a lot of mixed emotions about it. First of all, I can't believe he's going to preschool! Back in late spring of this year, right as school was getting out and Cohen went in for his 3 year check up, his pediatrician recommended see about getting him evaluated and into the special ed preschool locally. We were having some rough days and seeing some new behaviors that we weren't quite sure about along with some ongoing things we've known about for awhile. I'm so glad he "got in". But he had to qualify in several areas and he did. So we will go back in a few weeks to make an IEP and then he will be starting the program in October.

It's stressful to feel like you desperately need more help than you can give your own child. I may have cried on the phone when the lady in charge of the preschool program told me they wouldn't be able to evaluate him until fall (true story). He had just aged out of the birth-3 programs so we couldn't turn to them for help and I was trying to navigate the school system as well as a neurodevelopmental program to have him evaluated there as well. It was a little bit rough.

They say preemies are "supposed to" catch up by two years old. Cohen is an amazing boy who has made great strides in a lot of areas. He has relatively few problems considering how early and sick he was. But he's not caught up. And we've known that, but it seems like it's becoming more real now.

We feel like Cohen has made some pretty big strides over the summer...he will now climb some structures at the playground and even go down the slides! Woohoo! It's hard to know with him whether he lacks the physical abilities or because he lacks the confidence/feels unstable to do certain things.

And now my baby is going off to preschool. Off into the big, bad world alone where I can't protect him. (What if they're mean to him? What if he gets made fun of? What if..what if...what if...) I think it will be so good for him and I think that he will really enjoy it. I'm so proud of him and I know it will all turn out well. For now, I'm just going to sit here and cry while I pick out his backpack.

A New Kind of Birthday

You know what's kind of weird? Having my baby's birthday coming up and not feeling sad and overwhelmed. It's a birthday and I get to fully celebrate it. I don't have to visit a grave. It's a birthday that doesn't double as a death day. A supposed to be the "best day of my life" that was actually the worst day of my life. We have taken to having a little party for Cohen after the actual birthday so that we still get to celebrate him, but his actual birthday will always have some bitter with the sweet. I hate that this is the way it is, but I can't change it. Maybe someday the pain will ease, but for now, it's a difficult day.

This time, we get a little normalcy. I get to think back to the day our little chubby baby entered the world and even though it was a bumpy ride, he was healthy. We got to count his fingers and toes and snuggle and have a baby experience that didn't involve life support and isolettes.

It's kind of crazy to have a birthday coming that I don't have to prepare myself for and send out "this is a bad time of year, bear with me" messages. I don't have to take the week off work or throw myself into projects to stay busy and distracted. This birthday feels different and light and joyful. Well, mostly joyful, I am eating brownies and crying into my pillow that my baby is one.

So this is a new kind of birthday and I just get to enjoy it. I'm kind of excited about celebrating this sweet little rainbow baby!

The Reality of Not Catching Up by 2

Don't worry, preemies catch up by age 2. 

Well, that's what they say anyway. I've been struggling with the fact that Cohen, in theory, should have been "caught up" by the time he was two. He will be three soon and he's not caught up. Oh sure, he's on the charts now and when people ask us if he's "normal" now, we generally say yes. Because he is normal to us. 

Last month we took Cohen in to the doctor to express some concerns we have with some of his behaviors and lack of fine and gross motor skills. Today I was wandering through the notes from his pediatrician and there it was...sensory integration disorder and developmentally delayed. For some reason, it hit me hard. Really hard. It's a hard pill to swallow. We've known that Cohen isn't where his peers are. Knowing it yourself and then seeing it there in black and white is different. His doctor has recommended that we take him in for a comprehensive evaluation, which we will be doing in June along with a few other appointments prior to that. 

My sweet, sensitive boy who has overcome so much is delayed. Trust me, I know it's not the end of the world. I know that things could have turned out so differently, I don't need to be reminded of that. The labels don't make a difference to us. It's just hard for this mom's sensitive, protective heart to see those words. To see confirmation of what you've known but have been hoping you were wrong about. 

Cohen has always been "delayed". This is why preemies are given an adjusted age, to account for the fact that really they weren't supposed to be born until weeks or months later. But remember? "They" say he was supposed to catch up by two. And yet, here we are. He lacks a lot of motor skills. He grunts or yells at kids, even though he has the words, he can't always seem to make sense of them or use them appropriately. Some days, everything is a battle. Not just because he is exerting his 2 year old need for control, but because in his brain, he can't focus and can't process many of the things around him. I struggle with knowing how to help him. 

As parents, we just want to protect our children. We don't want them to get made fun of on the playground or feel like they aren't good enough. We are starting to realize that the things he was supposed to grow out of as he became an ex-preemie, may be things that he struggles with for years to come, maybe even a lifetime. I don't need Cohen to be the best at everything he does. He doesn't need to have straight A's or be the captain of the football team. I just want to be able to teach and guide him to be the best Cohen that he can be. However that looks, if he catches up now, in the future, or if these are things he will deal with his whole life. 

Making Strides

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

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

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

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

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

Having a Baby after a Preemie

Having a preemie and having a term baby are such different experiences. There's the obvious difference of Ezra, other than a few hours in the special care nursery for his little scare, he didn't have to have a breathing tube, be supported by multiple machines, nurses and doctors or be weighed in grams. Our boys each have their own story and their challenges and successes will never be put against each other, but there are differences that are unavoidable because of their beginnings. 

With Cohen, I found myself always being anxious for him to get to the next stage. The next weight, the next increase in feeding, waiting for him to meet the "normal" milestones. I was always looking for what was next. Things had always been progress driven in his life and that's what I was used to. 

With Ezra, I feel like it's going way too fast. Of course with Cohen we always had a little extra time since he wasn't expected to meet milestones until his adjusted age (4 months after his actual age) and Ezra is living on the early side of meeting milestones (umm...pulling up to stand and cruising along furniture at 7 months, help me!) With him, I'm able to enjoy the phase that he's in and I'm not always so anxious for him to be at the next stage. 

It really is such a different journey to not have to wonder constantly Is this "normal"? When will he sit/crawl/walk? So different. It's also a little bit eye opening to watch the way Ezra has been developing and to realize the differences in a preemie/sensory challenged baby and a "normal" baby.

I am so proud of both of my boys and how far they have come. It's been so fun to be able to relax and enjoy having a baby. While it isn't without its challenges, it has been really fun to watch Cohen become a big brother to a sibling he gets to grow up with. I'm learning to let go of a little of the When, when, when stage and just let my boys be what they are going to be, when they are going to be it in their own time. Early or late. 

Cohen - 2.5 Years Old

Cohen is 2 1/2 years old! He was been growing and changing so much over the last few months.

He talks a lot and understands even more. The last time he we checked his weight he was 29 lbs and 3 feet tall. He has been a potty training champ. We tried a few days here and there but he was over it partway through the days. I didn't want to push it, especially with a new baby on the way. One day he said "no diaper!" and never looked back. He still wears diapers at nap and bedtime, partly because he sleeps about 12 hours at night and also because he is still sleeping in his crib and couldn't get up to go even if he wanted to. Yes, he's still in his crib. We haven't made the change yet because his crib has always been his "safe place" so I'm not terribly anxious to rush him out of it. He does things in his own time, we'll know when he's ready.

His favorite things are stuffed animals, tractors (twactos), trains and cars (caws). He also likes to help out mommy and daddy. Whenever we are making dinner he likes to "help". We found him sitting on the floor with a bowl and a whisk and he told us he was making cookies. He always asks to take toys to bed and sometimes we let him pick one (or twelve). He got a new tractor for Christmas and wanted to take it to bed so we let him. An hour later he was still awake in bed playing with it so I sent Danny in to take it away and tell him it was time to sleep. When he got up in the morning, he saw the tractor sitting outside his door and said "Daddy take da twacto" and kept repeating it all morning. It was so sad, poor little fellow. His other new hobbies include washing his hands, turning lights on and off, and playing in his room.

Cohen still goes to OT twice a month and we have been seeing some pretty cool growth. I realized one day that I hadn't seen him startle to a noise in several months! This is pretty big for him because as a baby he startled all the time and then up until recently he still jumped at a lot of noises and got really scared and anxious about them. He has also been doing lots of swinging and gaining confidence in his physical capabilities.

Cohen and Ezra are starting to interact a little more. We make a conscious effort to include them in things together, Ezzy helps say goodnight to Cohen, Ez "gives kisses" to Cohen. It's so cute to watch them start to notice each other a little more. I can't wait to continue to watch their relationship grow, I hope they are good buddies.

He is still our sweet, sensitive boy. It has been so fun to watch him grow, gain confidence, and become a "big boy" lately. I still can't believe how grown up he is getting. Sigh. The NICU journey seems like a lifetime ago. So proud of this boy and we love him with all our hearts.

NICU Care Packages 2013

The NICU Care Packages have been delivered!! Hooray! These care packages have been donated in honor of our own former 25 weeker, 1 lb 8 oz baby boy along with his friends Isaiah, JJ, Kyle, & Brant. And also in loving memory of our own Carter and his friends Hudson, Miranda, & Keaton.

We kept things quite simple this year and I think we were still very successful. I am continually overwhelmed by the generosity of others who support us in this project. It would absolutely not be possible without all of you!

Now that we are trying to wrangle two kids and a busy house, we decided to simplify the list for storing and organizing purposes. My friend Angie came up with the idea to put the care packages in reusable bags, which I thought was brilliant. She donated all of the bags, tissues, notebooks, and pens for the care packages. Amazing! We also had a group of local moms that donated many tiny, perfect knitted and crocheted hats. And of course all of our wonderful family and friends!

Each care package includes a blanket, hat, small notebook, pen, tissues, Emergen-C, chocolate, granola bar/trail mix, hand sanitizer, chapstick, lotion, and a small children's book.

                      

Every year I get nervous about whether we will be able to gather everything we need and whether we will have the finances to fill in the gaps. In the last 3 years, we have never been lacking in any of the things we need. It's incredible. We have a lot of family, friends, and even strangers that are willing to help out NICU families and babies.

I had grand plans to take the care packages down to UW as a family, but it just wasn't working out. We had to cancel two trips because of sicknesses and finally we were running out of time. Since it's a 2 hour drive each way, it isn't exactly a quick trip, especially with two kids. In the end, we decided we would have our little elf (Danny) drop off the care packages during a trip he was already making.

Unfortunately that means there are no pictures of the actual delivery. BUT, it doesn't take away how exciting it is to be able to drop off 45 care packages, sleep sacks, and extra handmade hats and blankets!

We will never be able to fully express our gratitude to everyone who continually contributes to this project. The packages outside the door, the growing pile of donations, the love and care we feel behind each person that asks how they can help. While the time we spent in the NICU was not during the holidays, it was long and it was hard. I can't imagine how hard it must be to have a baby in the NICU during the holidays and not being able to be home as a family. My hope is always that these care packages can be a bright spot in a long, tiring journey.

If you would like to read our story and how we got involved in this, click here. And also, our past years of NICU Care Packages 2011 and 2012.

First Snow

Today we have had our first snow of the winter. I was excited to see what Cohen thought when he woke up. He was somewhat indifferent about it, but when I convinced him he could go outside and play, he was all in. We laid Ezra down for nap and bundled him up. I may have put a few too many clothes on him, but he was warm and toasty.

He was mostly just thrilled to be outside. It's been so cold lately that we haven't ventured out much. We went out for a quick trip in the morning and then asked Gramma to come over to sit with Ezzy so I could take Cohen out for a walk. I was freezing, but he was thrilled. We even stopped to say "hi" to a few of the neighbors. We were going to go down our favorite path, but it was a little too chilly out so we decided to head home.

I had to bribe Cohen with hot chocolate and Gramma to get him to come back inside!