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"}