The Ongoing Sensory Puzzle

For many months, from when Cohen was a baby and now again recently, I have wondered about sensory issues with him. When he was a baby, he didn't know how to regulate himself or calm himself down. He was always out in what we called "airplane mode" with his arms straight out waving around seemingly seeking input. We made great strides with his OT and things got way better.

Now, over the last few months, I have continued to wonder if he still has some of these sensory issues. He is a busy boy and I hear lots of "Oh, he's a boy, boys are busy" or "Yeah, my child is busy too". And yes, I definitely think that some of it is that he is just a boy who just has a lot of things to do. But sometimes it seems like a different kind of busy that is hard to explain.

When we went in to OT yesterday, she asked me where I thought we were at. I told her I was happy with how Cohen was doing overall but that I was still struggling with knowing the difference between a regularly busy baby and one who was busy but there seemed to be something else going on. I told her how he will sit in his swing for hours perfectly content. He also still likes to be in his crib in the dark or in contained places. She suggested that he may still in fact have some problems with his vestibular system.

The vestibular system  "contributes to balance in most mammals and to the sense of spatial orientation, is the sensory system that provides the leading contribution about movement and sense of balance." (From Wikipedia). We have suspected for awhile that Cohen may be having issues with this and we decided that he probably still is. This would explain why he took so long to walk when we felt he had the ability to do it but was hesitating. It also explains why he walks so cautiously and only about 50% of the time. It also makes more sense why he hates being laid down to have his diaper changed or get dressed (yes, some of this is normal for a baby his age) but he fights us greatly as we lay him down. This also explains why he loves to be in his swing, he is upright and gets to have the sensory input. When Susan tried to lay him in a hammock to swing him, he acted panicked because he wasn't upright but at more of an angle or laying down. This vestibular system also is part of his sensory system and could explain why he seems to so constantly be seeking input. His little system isn't quite processing the movements and positions in space the way it should be. 

And of course, this all goes back to Cohen being a preemie. The vestibular system develops later on in pergnancy, after most preemies are already born. Add to that the constant stimulation of lights, noise, not getting the "squish time" inside, the tubes, wires, needles, etc and you have one overstimulated baby struggling to make sense of the world he isn't supposed to be in yet. 

The pieces just seemed to fall into place. There was something that just seemed off. Nothing overly dramatic, but just different. I felt validated when Susan acknowledged that yes, he does seem to have these lingering vestibular/sensory problems. It's nothing that can't be fixed and most likely won't be lifelong. Just one of those preemie things, I suppose. 

The Worry that Doesn't Go Away

I have been somewhat surprised this winter at the amount I have still been worrying about Cohen getting sick. I thought I would be ready to be a little braver than last year where we stayed inside, rarely took Cohen anywhere (other than Gramma's) and went through hundreds of Lysol wipes and bottles of hand sanitizer.

While we have eased up a little this year, I still get worried about him catching something. Maybe it has something to do with hearing about many cases of RSV, both locally and through some preemie friends, the particularly nasty flu going around and just the "yuck" in general. Maybe it has something to do with the fear the doctors and nurses instill in you from the day you leave the hospital. We have gone through less hand sanitizer and make occasional trips to the grocery store, but I still cringe when I hear people hacking in the grocery store or see kids with snotty noses out and about. (I realize in some situations it is impossible to stay home if you are sick or keep your kids home, but this pregnant lady and her preemie baby thank you for staying home when possible :)

Cohen did extremely well last winter and really has only had one cold since he was born. He is still considered a chronic lung disease baby, although it really doesn't affect his day to day life. I still think it's in his best interest to be cautious as he may not have the reserves that other babies have and we really don't know how he would do with a major sickness. And so, we spend more time inside trying to get out to non-kid filled places when we can. Cohen loves to go places and will often get his coat and shoes and bring them to me to go outside. It's hard and sometimes we go a little stir crazy, but I know I just have to do what's best for Cohen. I have tried to take advantage of this time by doing a few things like going through baby clothes and learning to crochet. We will be very, very excited when spring gets here and we can go outside!!

20 Weeks - Halfway!

20 weeks is here! We are halfway through this pregnancy, which seems so crazy. It totally is different when it's your second and you have an active toddler to keep you busy. The two week checks also seem to make it go by faster.

Our appointment isn't until the end of the week where we will have our big ultrasound, the anatomy scan, and they will of course check my cervix. All seems to be going well so far, but I still have this fear in the back of my mind that one of these days I am going to go in to get checked and find out my cervix is shortening. I try to reassure myself that even if it was shortening, hopefully it would shorten slower this time since I will be growing slower and the pressure on it will be less. I also remind myself that the boys were not delivered because of my continuous contractions or shortening cervix, they were delivered because of the progression of the TTTS.

It seems so strange, but Danny and I were talking about how even if the baby was delivered at 30 weeks that we would feel okay. Obviously we want much longer than that, but we will both breathe a huge sigh of relief when we pass the 25 week mark.

In other news, our baby is the size of a banana! I feel him kicking quite a bit and Danny has gotten to feel him too. I think I've gained around 10 pounds, we'll see at the next doctor's appointment. I have still been craving sweets quite a bit. I also eat a bowl of Honey Nut Cheerios at least once a day. And apple juice, I always want apple juice or apples. I have given in to maternity shirts and have discovered a love of leggings. I haven't given in to maternity pants yet but can no longer button (or zip) my regular pants so I'm using the hair tie trick.

It feels good to just write about normal things of pregnancy and feel baby boy kicking as I type, so much different than 20 weeks with the boys. We will be counting down the days until the end of the week when we get to see our boy again and hopefully have another good appointment. Baby K3 is kicking as I type, I think he's saying "Hi and thanks for cheering me on!" (I was going to take a picture but haven't gotten to it yet. I'll add it when Danny gets home.)

Teeny Tears Update: Diaper Therapy

Over this last few weeks, the Northwest Diaper Dreamers (our local Teeny Tears group) has sent out (or will be very soon) over 600 diapers! They have gone to:

5 hospitals in Washington
1 NILMDTS photographer in Seattle
Sawyer's Heart in Illinois
6 hospitals in Florida
2 hospitals in Texas

We love doing this project and are continually amazed and overwhelmed that we have the support to continue making diapers. We appreciate all of our helpers who cut out endless amounts of diapers and all of those who come to our "diaper parties" to help out. Our local quilt shop has a sign up and we have many people donate flannel. They even let us hold diaper parties at their shop!! This would not be possible without all the wonderful help.

All of the diaper sets are sent with small cards and an angel's name along with the Teeny Tears website. We have been honored to hear from a few families who have received the diapers, although it's always bittersweet as we wish no one ever needed the diapers.

We donate a fair amount of diapers in Carter's name, but we also donate in other angel babies names. I feel like it's some small thing that I can do to help other baby loss moms. There is something about seeing your baby's name written down for others to see that validates their presence in this world, no matter how brief.  I've said it before but this has been such a healing project for me in so many ways and my mom and I often call it our "diaper therapy".

And of course if you ever want to help out, let me know! You can help even if you can't sew! Teeny Tears has an awesome facebook group of women full of tips and tricks of the trade to help you get started. Teeny Tears is also not limited to the northwest, there are people all over the United States and Canada making diapers, so surely there is a connection out there for you. For more info on all the specific ways to help out, click here.

The Owl Hat

Cohen got this adorable little hat from his Auntie Karen for Christmas. It took us awhile to get him to keep it on but I'm glad he does now!! The little fellow has been working on some molars and has been a little cranky, but it hasn't slowed him down at all. Such a sweet and silly boy. I can't wait to see what his new brother's personality will be like.

While Mommy's Away...

I go to work one day a week and usually it is Danny's off so he stays home with Cohen. This afternoon while I was at work I got the following text message:

"Cohen pulled the taco seasoning off the counter all over himself and started rubbing his eyes and crying. Cohen and daddy jumped in the shower with their clothes on to rinse the seasoning out of his eyes. We stumbled through the house (naked) back to Cohen's room to get him dressed and found the lights were out and the breaker needed to be flipped. Daddy finally just got everything cleaned up. Only 3 hours till mommy gets home". 

And when I got home I also noticed two scratches on Cohen's forehead from the kitty. Sounds like the had an eventful day! 

The Happy Part

After my last post, I thought I should clarify a little. I am enjoying this pregnancy. Not every single moment is fear and anxiety. I actually have been feeling mostly calm and optimistic. I think the worries come out more on the blog because this is my place to put my feelings into words, whether they are feelings that I feel once a week, or every moment of every day. Even though I spend less time worrying than being happy, the hard thoughts and feelings seem to hold more weight. It helps me to be able to get them out so that I can focus more on the positive parts.

If you are someone who has had a preemie or lost a baby, or even if you haven't, I want to give an accurate picture of what this pregnancy has been like for us. Overall, it has been good. Yes, there is a fair amount of worry and fear and I don't want to downplay that either because it is our reality. But there is also joy at feeling this little baby kicking, and finding out that we are having another boy, and getting to see him on ultrasounds. I have been enjoying that I am finally starting to look a little pregnant and talking to my friends about babies. There is absolutely no way that you can go through what we've been through and not have lingering emotions from it. If you had gone rock climbing and fell off the cliff, you would still be worried the next time you went out. You would be anxious about your ropes and other equipment would support you and keep you safe. When something has failed you, you have to relearn to trust and past experiences greatly shape how that happens.

So, just so you know, I really and truly have been enjoying this pregnancy. We have so much to be thankful for, that so far my body is cooperating and that our little boy is looking healthy. After our last doctor's appointment I convinced Danny to take me to the store so we could pick out a little set of jammies to bring this little boy home in. They are hanging in our living room as my inspiration, just like I did with the boys' onesies in the hospital. It's exciting to think that we could be bringing home a baby boy who would actually fit in newborn clothes! So there you have it. Our journey does contain fear and being cautious with our emotions, but it does also include the joy of a new little boy to add to our family.

{Baby K3's very own football jammies} 

{And of course this little boy..."No mom, I wasn't about to throw the cup off my tray"}

Then and Now

19 Weeks! Each week seems to go by quickly and slowly at the same time. We are in what I call "the danger zone" from 19/20-25 weeks when our world completely changed. We thought we had already been through a few challenges with the ultrasound results that showed that our Baby A may have a genetic problem and were sent to a genetic specialist. We knew that it was unlikely because of our age and health, but we also knew that if our baby had Downs or another genetic problem, it wouldn't change our decision on whether to keep both babies or not. It was never an option to decide not to keep one of our babies. We had no idea that eventually it would be a choice we didn't get to make in the opposite direction. After the genetics scare was the trip to the ER on vacation because I was having severe pain and spent most of our vacation in bed. Then it was talk of a shortening/funneling cervix, contractions, and twin to twin transfusion and eventually being admitted to the hospital.

Aside from the first few issues, most of this happened within a fairly short amount of time, about 5 weeks. Two weeks at home, three weeks in the hospital. But let me tell you, those 3 weeks in the hospital, were the longest of my life. When I think back on it, I'm fairly certain it had to have been longer than only around 20 days in the hospital, but I felt every.single.minute. Every day I laid in that hospital bed, feeling the contractions and feeling totally and completely frustrated and helpless. Trying to hold onto hope but really struggling to feel hopeful at all. There were days when I would literally look at the clock and wait for the next minute to come. It felt like endless days of monitoring, not being able to move for fear of starting all over again with trying to get the babies back on the monitors. Every night at exactly 7:00 pm I would call the nurses in and ask for my sleeping medication. Getting to bedtime was always my goal for the day. There was some relief in making it to the end of the day, but also the reality of doing it all again the next day. We were so thankful for each and every day our boys got to stay inside, but it was incredibly tiring.

And here we sit, approaching "the danger zone". While those days seemed neverending and full of pain and fear, I would do them all again in a heartbeat if that's what it took. I have nightmares about it all happening again. I know everyone says "it's a different pregnancy" and I repeat that to myself often. As we approach these next weeks, I am trying to appreciate each and every quiet moment that I have.  Every day I hope and pray for many, many more because I just don't think I would have the strength to do that again. Here's to hoping to get to continue to be a "normal" pregnant person (well you know, aside from the thousands of ultrasounds).

The Rocking Chair

Cohen has taken a special liking to his rocking chair. Sometimes it will be really quiet and I will go look in his room and he will be sitting in his rocking chair reading books. He also loves to pull back the curtains and look outside. He even lets us snuggle him and read him books or just sit and rock. It's pretty great to get a little snuggle time from a little boy who generally never stops moving. Cohen has also been very into books the last week or so. He will get his favorites and climb into your lap and sit through about 3 pages before he leaves for another one. We take what we can get!

Mixed Feelings

As we sat in the doctor's office for our appointment the other day, I could hear the muffled talking of the doctor chatting with another patient next door. It instantly brought me back to one of the days where we were waiting to get what we knew was bad news from the doctor with the twins. We had finished our ultrasound and knew something was up but were waiting to hear what it was. The door opened to the room next to us and we could hear the doctor giving another patient our news. He started with saying something about the twins and how the situation wasn't looking the best. We could hear the surprise in the couples voice as they were clearly not expecting twins and were somewhat shocked at the news. They all had a good laugh over the mix up.

And yet, there we sat in the next room, knowing that that was our news. Knowing that the serious tone in the doctor's voice was coming our way  next. And wishing we could laugh it off as a mistake. I clearly remember sitting on the exam table with my head on Danny's chest, so entirely full of fear for my boys. I don't even remember what bad news we got that day as it seems like every appointment held some kind of hard news.

My emotions now are kind of a mixed bag. I still hold my breath through each ultrasound until I see our little boy moving and see that my cervix is long and closed. I wait for bad news. Thankfully, we haven't gotten any. But, my body failed me the last time around and I have to learn to trust it again. I am slowly letting my guard down and I think today was the first day that I have really felt good about this pregnancy and felt like celebrating. It was such a relief to know that everything was as it should be and that we got to be the family laughing and chatting with the doctor.

We will continue to go in every 2 weeks and will continue to hope and pray for routine appointments where we just get to enjoy the little things our baby boy is doing. While it is somewhat of a nuisance to go in so often, I am also glad. Being seen every 2 weeks makes it so that if I start to get ideas in my head that something is wrong, I know I have an appointment coming up soon and that hopefully my fears will be laid to rest to get me through to the next appointment. It's hard to put into words exactly what I'm feeling. Optimistic and excited about this little boy. But also knowing the potential of what could happen. But trying to just enjoy it, one moment at a time. All we really want is for this little boy to get here safely.

18 Weeks

Well folks, here we are at 18 weeks. I am glad to say that I have been feeling somewhat calmer the last few weeks. I don't know how long it will last, but I'm trying to just enjoy it. I think my belly is starting to get a little bigger. Or at least it feels like it to me.

I have an appointment tomorrow, as I mentioned I will be going every 2 weeks for the next bit just to make sure my cervix is behaving. I think that will make the time go by quickly as I really only have to make it 2 weeks between appointments. We have been busy around here so I also haven't had much time to dwell on the "what ifs" which has been good. And of course Cohen keeps me on my toes and busy all.day.long.

I've been doing little things to get ready, but still haven't committed to doing anything major (like getting a crib etc). I recently learned to crochet so I did decide to make a baby blanket. Which is kind of a big step. I have these conflicting thoughts of allowing myself to believe we will bring home a baby and wanting to protect myself. But, I can honestly say that these last few calm weeks have been really good and I hope there are many more like this where I can truly enjoy the pregnancy.

Ladies and Gentlemen...

...we have a walker!!!

Despite months of being able to stand and take steps, Cohen just wasn't ready to walk. As always, he does things in his own time. The last few days he has finally started to walk on his own. It has been so fun to watch him take his very slow, deliberate steps. He may not be the fastest walker in town, but he sure is cute! (Also, please ignore the oatmeal all over his shirt and pants).

Mr. Personality

My sister has taken all of these adorable pictures of Cohen that I keep meaning to put up!

Cohen is at a fun age right now, his personality is really starting to come out. He still loves to be outside any chance we get. He likes to follow the cat around and he even tried to give him a kiss (which did not go well). He loves to climb on the couch, the chairs, the end tables...anything he can get to. He is big into throwing everything, we often find ourselves ducking and trying to avoid getting clocked with whatever he decides to chuck. He babbles up a storm and it's so funny to sit and listen to him. He also has several maniacal laughs that he likes to pull out at various times. He has developed a great interest in using a spoon or fork but wants to do it himself.

And just in the last few days he has even decided to start standing and walking on his own! He has been able to take steps for awhile now, but refused to walk on his own. We have noticed him voluntarily walking short distances on his own lately. He has also decided to start throwing fits. I usually just walk away and thankfully the fits only last a very short time before he gets distracted by something else. I find myself trying not to giggle when he tosses himself to the floor, does various acrobatic poses, and yells his ugly scream. Ahh, so fun. Thankfully he's cute and he certainly is Mr. Personality.

Fess Up Friday

I'm too scared to get a haircut for fear of ending up on bedrest and having terrible bedhead again.

I went to set my alarm for work and I couldn't remember how.

I have been known to get in bed, lay there for 5 minutes, and loudly announce that I can't sleep.

I was highly offended when Danny sold me out to my OB that I didn't exercise. Ever.

I didn't make any New Year's Resolutions.

Sometimes I think our cat is more high maintenance than our child.

I think these ears are adorable (and totally his dad's).

 

Loss and the Holidays

I was pushing my cart through the floral section of the grocery store on Christmas Eve. I was looking for a balloon to take to Carter. Somehow they were just all wrong..."Get well soon", "Smile", ones with giant happy smiley faces. Finally, I picked a little one that just said "I love you". I tried to fight back my tears as I paid for my groceries and left. I was, once again, mad that this was my life. Disappointed that the dreams I had for my life would always be broken and sad that the innocence of life had been tainted.

There was a deep, deep sadness as I drove up to Carter's grave. I had been having a hard time and I knew I just needed to spend some time with my boy. I put his balloon next to his Christmas tree and cried. And cried. I wished with all of my heart that he could be there in my arms. I longed to see him cruising around the house with Cohen throwing ornaments off the tree. I wanted to fill his stocking with things he could actually play with. I wanted to plop him in front of the tree and take his picture.

We still struggle with the fact that Carter isn't here.  Yes, this year was a little "easier" (that never seems like quite the right word), but it was still hard. It was a reminder that while we can carry on with our day to day lives in a more graceful way than last year, that pain is still there and will always be there.

In the midst of the "most wonderful time of the year" we still had to take time out to grieve. And to cry. And to miss our little boy. While we have done a lot of healing over the last year, I don't think I will ever stop wishing that he was here and wondering what life would have been like. When a piece of your heart is gone, you can't help but want it back.

The Weekend

We had a seriously loooong weekend over here. Danny went ice fishing for the weekend so it was just Cohen and I. Just this weekend, Cohen learned how to climb onto our end table and stand on our stereo system. He also learned to climb into his dad's desk chair and onto the desk. He also opened an entire package of crackers and smashed them on the floor upon arriving home from the grocery store. He also woke up way too early from his naps both days due to deciding to poop when he was supposed to be napping. He also developed a seriously evil (and funny) laugh. He also didn't sleep all night Saturday night and woke up with a cold on Sunday. All I can say is, single parents, you are very brave.

He also gave me about 10 of the sweetest, unprompted kisses, all on his own. He came over to me and took my face between his hands. He kept turning my head so I thought he was looking at something and then he gave me one of his best open mouthed kisses, snot and all. And then he turned my face and did the other cheek too.

I am 17 weeks along this week and Cohen is 19 months old! All is still going well here. I think the plan will be for me to get my cervix checked every 2 weeks (yahoo) until I hit around 28 weeks. I am really, really hoping and praying for no contractions. We are getting to the point where I started having them with the boys, which is making me nervous. It was such a helpless, frustrating feeling to have consistent contractions and not be able to do anything about it but sit and worry. So I am hoping for none this time around.

It has been interesting the different doctors opinions on me and my issues. We have gotten everything from the wonderful "Let's not turn this into something it's not" to "You don't need to see a perinatologist because you really aren't high risk (but you can if you want)" to "Yes, you are a high risk patient and we will be watching you like one". I think they just don't really know what to make of me. I think the consensus is that the majority of things that happened with the boys can be attributed to the fact that it was a twin pregnancy. However, there is still a chance that I could still have cervical shortening and contractions again. But, probably not. Although it isn't impossible so they are watching for it. Got it? Good!

I just keep telling them I am going for uneventful, but I also need to be reassured. I have been quite happy with my care aside from that first appointment.

And here is a picture of the belly. I made my sister take a picture this morning, it's the first "belly picture" I've taken. It's little, but it's there. I keep thinking that it should be bigger by now, but I have to remind myself I'm only growing one baby this time.

{Left is with the twins at 17 weeks, Right is baby boy at 17 weeks}

New Year's Eve

Every year Gramma and Grampa have a New Year's Eve party for the grandkids. They all love it and look forward to it each year. Cohen was very excited that he got to go this year! We dropped him off in the afternoon and Danny and I got to go on a date. We went to an early dinner and then to watch Les Miserables at the new theater that was recently built near us. We were home and in bed by 10:30, it was wonderful.

Every year my dad sets up his train sets that he has from when he was a kid. Cohen loved watching them.

{Grampa & Gramma ready to party}

{The party crew}

{Watching trains}

{Snuggle time with Grampa before bed}

{Breakfast time on New Year's Day}

It's A....

BOY!!!

We went in for an ultrasound at 16 weeks to check my cervix and they usually look at the baby while we are there too. My cervix looks good and we were able to get a little peek at some little boy parts! Baby was being shy at first with his legs crossed, but the ultrasound tech wiggled him a little and he got over his shyness.

We originally thought that Danny wouldn't be able to make the appointment because of work. We had planned on having them write down the gender and put it in an envelope and then taking it to get cupcakes made in that color and all finding out at the same time. But, Danny was able to make it so we found out at the ultrasound and then surprised the rest of our family later.

{Cohen thought he was getting a sister}

{But he was also interested in a little brother}

I was convinced that the baby was a girl and during the ultrasound she even said that the heart rate was a girl heart rate. But, I am also totally not surprised that it's a boy.  My mom and each of her 3 sisters all had two boys first. I have three brothers. My brother and his wife had two boys first. We had two boys first and now another. Danny has two brothers. I have one lone niece, who was really, really hoping for a girl. But, our family makes boys, it's what we do.

We are beyond thrilled for Cohen to have another brother. I can't wait to see what kind of relationship they will have. I'm still have to catch myself though when I think the baby is a girl now that I know it's a boy! And I'm glad I can stop calling him "it".

So, there you have it, another boy for the Kimmels!

{Yay! A brother!}

Happy New Year!

Well, 2012 is officially gone. Happy New Year!! We were more than happy to see 2011 go, but this year has been a little different. I was thinking this morning about the last year and I can honestly say that it was good. Hard, but good.

We have been incredibly blessed by Cohen's health. He has had one cold since he's been home and no other sicknesses. For a preemie this is seemingly unheard of. We avoided the dreaded RSV our first winter and are hoping to do the same this winter. Cohen was able to get off of his oxygen without any trouble, his enlarged heart went back to normal size and we graduated from his pulmonologist and his cardiologist (although that one we kind of graduated ourselves from). Cohen is still a little on the skinny side, but his pediatrician has been pleased with his steady weight gain.

After the winter was over, we were able to start going to our church again regularly. We had really missed it over the last year and it felt good to be back in our Sunday school class and our regular church services. I was able to go to a Bible study and have just started going to a monthly group that gets together to sew blankets for babies in need. I love how friendly our church is and how easy it is to connect with others.

And Teeny Tears. Oh, Teeny Tears. What a blessing you have been in my life. Our little group here in Lynden has donated around 2500 diapers over the last year(ish). Some think it seems like a sad thing to do, to sew tiny diapers for babies that have died. I think it's wonderful and it gives me time to think about Carter. I also love knowing that somewhere out there when a family receives a diaper, they know that someone has been in their shoes, and that someone has taken the time to care about their baby.

We've had our hard moments too, continuing to grieve Carter, and celebrating his first birthday without him. When I think back to those first weeks and months where I didn't think there was any way I could keep going, I still don't know how I made it. I know it had something to do with our family, friends, and God's faithfulness to us. I am glad to be where I'm at now. It's still hard, but we also know how blessed we are.

And of course, baby Kimmel #3! We are hoping to get a sneak peek about whether this little baby is going to require hairbows or trucks. We will be thrilled with either.

So, 2012 certainly had it's challenges, but we have grown as individuals and as a family. We are nervously excited to see what 2013 has in store.

{January}

{Feb - Last echo and no more oxygen!}

{March - Mr. Expressive}

{April - first time to church}

{May - March of Dimes}

{June - first birthday}

{July - Camping}

{August - the local fair}

{September - Pumpkin Patch}

{October - Halloween}

{November}

{December - Christmas}