Happy Halloween

Even though Cohen doesn't get to go anywhere he still wanted to get all dressed up.

{Ho, Ho, Ho}

 

{Don't worry bud, some day you will thank me!}

{They call me Mr. Claus}

 

{Too much eggnog}

He may have gotten a little confused about which holiday it was though...or maybe his mom just really loves Christmas. He got this outfit at the big Second Chance Christmas open house. I wasn't going to get him a costume because I couldn't bring myself to spend the money on it. But this was perfect and only $2.00 (imagine that)! Plus it's 3-6 months so maybe he can still wear it at Christmas. Happy first Halloween Cohen!

Picture Fix

I know the blog has been a little light on Cohen pictures lately so here you go. Enjoy!

{Ready for his drive by to 2nd Chance with Gramma}

 {I put him in his bouncy seat so I could power shower and got out to see him eating his cannula}

 {Cohen has been working on growing some new hair!}

 

{Watching the World Series with Gramma & Grampa}

  {See my new hair???}

 {Morning snuggles with Dad}

p.s. If you have already sent me your address for a birth announcement then you are on the list! If you haven't and you want one, send your address to jana.rinehart@gmail.com. We ordered plenty and would love to send one to anyone that wants one as a little "thankyou" for all of your support (and of course we like to show Cohen off :)

Gramma & Carter

Loss seems to be a continual thing in our family. For me, each one seems to be worse than the last. As a kid my Grampa Rinehart died, then my Grandpa Gardner. After that it was my Grandma Polly, then my Uncle Richard, and then my Auntie Rose. I remember when my Auntie Rose died that my heart broke for my cousins. I couldn't imagine the pain of losing my mom and not having her there for the rest of my life.

A month after I graduated from nursing school and a few days before I took my NCLEX (nursing boards), my Gramma Rinehart died. She had been in and out of the hospital for a few months and she became very sick at the end. We knew it was her time. I asked my family not to tell me if she passed away before I took my test because I knew I would fall apart and not be able to do it. My mom came down to Seattle to drive me in for my test and to take me home afterwards. The first thing I asked her when I got in the car was whether my Gramma had died. She confirmed what I already knew deep in my heart. My Gramma was gone. This loss was the one that, so far in my life, had hit me the hardest. My Gramma was a nurse and she had been a huge support to me throughout nursing school. She encouraged me when I wanted to quit, she let me live with her for the summer before so that I could work at a surgery center in Seattle before my last semester of nursing school. She told me many stories about the things that had happened when she was in nursing school and how much things had changed. I broke up with my first boyfriend at her house and after he left I climbed into her bed and cried. She helped me practice my cooking skills the summer I spent at her house. She was always more than happy to feed me and whichever friends I brought over to visit. She had a candy jar that she always kept filled, even when I was older, I knew I could always count on her to have it full.

I cried for years (and still do) after I lost her. I miss her all the time. Whenever I drove past her exit on the freeway I thought of her. When I found out I had passed my NCLEX I wanted so badly to be able to tell her that I was really a nurse. I never got to do that. I wanted to be able to go and tell her about my first day of work. On my wedding day I thought about her and wished she could have been there. When we found out we were pregnant with twins I thought about how much she would have enjoyed having two new babies to add to her growing list of great grandchildren.

The pain of loss is similar, yet so different with each one. Of course I miss my Gramma every day, but I also had memories of her to hold on to. Cards she sent me, words she spoke to me, memories of things we did together. I knew that she had lived a good, long life. With Carter, I don't have those things. I have memories of holding my baby boy for a few hours, after he was already gone. I don't have memories of things he did or said. I will never know what his first birthday would have been like, or what it would be like to send him off to his first day of kindergarten. I will never get to know what kind of person he would have been or what he would have been like. I have just been thinking about him so much lately. We were so excited to bring Cohen home, but we also knew it would be hard. For me it has just really finalized that Carter is never coming home. That I will never get to have both of my boys together at home. Honestly, I would rather have him here with me. I know that he wouldn't want to come back, but I just want to hold him one more time. I miss my Gramma and Carter both so, so much. I am glad that at least they are together and that Gramma has already gotten to meet one of my boys. I hope she has her always filled candy jar in heaven for him.

Birth Announcements

I finally got birth announcements made!! We would be more than happy to send one to you if you want one. Just send me your address to jana.rinehart@gmail.com

Doctor's Visit

Cohen had a follow up with his pediatrician yesterday and his feeding tube is gone for good! We took it out on Friday because he had snorted it halfway out and we realized we were really only using it for maybe part of a feed once a day. So, we decided to take it out and see what happened. Cohen never even looked back! He is taking all of his bottles now and eats every 1-3 hours during the day and he gets to go up to 5 hours at night now before we need to wake him up! Yay!

He weighed in at 10 lbs 13 oz yesterday (up 8 oz from Friday) and 22 inches long. He really is getting to be a big boy. His Dr said this was "the best case scenario" for him. She said he must have just really wanted to be home. He has done really well at home. We were a little nervous about him not gaining the amount of weight they wanted after we pulled his NG tube, but he proved that he can do it! Because he is gaining weight like a champ, he doesn't have to have his milk fortified with formula anymore either. He gets straight breastmilk now. It's nice to feel like we are able to make decisions about taking care of Cohen and have reinforcement that we are making decisions that benefit him.

{First appointment out of the hospital}

We did talk to her about him starting to spit up more and he also gags and coughs quite a bit so Dr K started him on some Zantac because she thinks he might be refluxing and she doesn't want him to spit up and then get it into his lungs. Almost all preemies have problems with reflux so she wasn't really too surprised about this. We just started him on it yesterday so we will see if it helps. The home health nurse will come out on Monday to weigh him, otherwise he doesn't have to have another appointment for a month.

Yesterday I took Cohen out for a walk in his stroller. It was a nice sunny day so I bundled Cohen up and we went for a walk. We have to get out of the house while we can. I never thought I would see the day where I would be able to just put Cohen in his stroller and take him outside. I also didn't think I would ever see the day where he would be called chubby! We are so proud of our little (big) guy.

Tuesday Pick Me Up

Some days you (and your couch) get barfed on...

Some days you get caught sticking your tongue out at Gramma....

Some days you get poo on your clothes (this one was mild compared to the one that went through his clothes and onto my pants!)....

Some days you need a good laugh...this is my cute 5 year old nephew caught singing and dancing and my sister managed to get a video. Happy Tuesday!

Did This Really Happen?

Since we have come home I feel like I have kind of been in this weird time warp. I just keep walking around the house or laying in bed at night thinking "Did all that really happen? Did we really have twins born way too early? Weren't we just laying in bed still shocked about the fact that we were having two babies? Did we really say goodbye to our precious baby boy? Is that little blue box from the hospital with the few things of Carter's the only proof I have that that he was here? Did we really spend over 4 months in the NICU watching our other baby boy fight for his life? Is he really ours now? When did all this happen?" It may sound strange to some of you  but it is just such a weird feeling. Like we got swept up into some kind of tornado and were spun and flung around and around and then suddenly dropped back out into "normal" life where everything is still carrying on as usual. Or like it was some kind of lifetime movie or a bad dream or something. All of that couldn't have been our life. Sometimes I wonder how we got through all of that and how we are still standing. Of course I know that it is only because of the Lord and the strength he gave us and all of the support he has given us through so many people. I know that he carried us through so many days that we otherwise wouldn't have made it through. I can't tell you how many days there were that I felt like throwing myself on the ground and giving up. I just didn't think my heart could take any more. Those are the days that God (often through many of you) scraped me up, put me back on my feet, and held me up so that I could get through the rest of the day. I am thankful that God is big enough to handle our pain. He lets me kick and scream and tell him that my heart is breaking. And then he reminds me that he is bigger than all of it and that he will never leave me.

Notice Anything Different?

Something missing perhaps?

 

Welcome Home Cohen

We got home in the afternoon and found the house all decorated for Cohen. Gramma and Karen were so excited to see Cohen and we were so glad to be home. My nephew Jordan got to see ("look but don't touch") Cohen for the first time. We got Cohen and all our stuff into the house gave him a bottle and showed him around the house. Then we said goodbye to Gramma and Karen and then we all laid down and took a nice long nap. Our family, all together, at home. It felt so good. (Thanks for all the pictures Karen!)

 

 

 

 

On Our Way!

After 130 days in the NICU, on October 13, Cohen finally got to come home! We got up bright and early to get to the hospital to get everything ready to go. We made a few last appointments, Cohen got his last exam, and he got his last bottle in the NICU. We said goodbye to all our friends and we were off. We couldn't believe we were finally free!

 {Ready to go. Can you tell I'm excited?}

 
I sat in the backseat with Cohen to make sure he was still breathing. We weren't quite sure what to expect from him with the long drive home, but he slept the whole way. We took his picture each time we drove through a new city and texted them to a few friends and some family. I thought these pictures were pretty funny because he really didn't move except maybe to open one eyeball occasionally. My mom and Karen were waiting at our house anxiously awaiting our arrival.

 

 

The Last Night

Okay, Cohen is napping, the house is somewhat clean, and I am watching Tangled on Netflix. Time to catch up on blogs! The last night at the NICU was bittersweet. Of course we were thrilled to be bringing Cohen home in the morning, but we were also saying goodbye to some amazing nurses who have been such a huge support to us for the last 130 days. I feel like they have become a part of our family. I find myself wanting to call the NICU just to talk to them and tell them how Cohen is doing and see how they are doing.

A few of Cohen's favorite night nurses were there on his last night which made me feel better. I packed up most of his stuff and they helped me pick out his going home outfit. One of them made the comment about how it must feel good to have picking out his outfit be the most stressful thing I have to think about. And it's true. After 4 months, well actually more like 9 months since the whole pregnancy was quite stressful, of being on a constant up and down roller coaster it did feel good to actually have time think about something normal like picking out Cohen's outfit. Of course our lives still aren't back to normal but we are getting to what will be our new normal.

I gave Cohen his bottle, changed his diaper, and kissed him goodnight. I thought about the irony of how excited I was that soon I wouldn't have to leave him at night. Most parents don't leave their kids overnight for quite some time and that's all we've ever known. Up until now we had never gotten to stay with Cohen overnight. I set out his outfit and left him at the hospital for the last time. I was so excited that he would finally get to be all ours. This probably will sound weird unless you've been through it, but it's hard to truly believe that a child is yours when he is in someone else's care. We loved him and took care of him as much as we could but in the end he wasn't ours to have the freedom to take care of. Sometimes it still will hit me at weird times that yes, he really is ours! No one is going to come take him away from us or tell us when we can or can't feed him or hold him. We loved the care that he got in the NICU but it just isn't the same in any way as having your baby at home.

We also had a few visitors on his last night. Tamara and Lindsey stopped by to bring us some dinner (thanks!) and get a little snuggle time with Cohen before he moved far away. It was nice to be closer to our friends for a little while. My wonderful Dr who took care of me in the hospital and delivered the boys also stopped by to see Cohen. I wasn't really sure how I would react to seeing her again since I get a little anxious with things like the clinic we had our appointments at, pregnant people, and things associated with our hard pregnancy and delivery. But, I was so happy to see her and to get to show Cohen off to her. He has come such a long way since the last time she saw him. 

{Cohen and Auntie Lindsey}

 {Cohen and Auntie Tamara}

{Cohen and Dr W}

Once we got back to the home we spent some time packing up what had been our lives for the last few months and trying to stuff it in the car. Somehow it all fit in there and we even left a little room for Cohen. I went to bed but woke up every few hours. I was just way too excited to get any good sleep. I kept thinking about all the things we could finally do when we got him home. We could take him for a walk in his stroller. We could put him in his crib and watch him sleep. We could lay a blanket on the floor and let him play. We could snuggle on the couch watching our favorite movies. Mixed in with the excitement was some anxiety. We had never taken care of him all by ourselves. Would we be able to? What if something happened, the nearest hospital is a 30 minute drive. What if he didn't like being home?


After a night of fitful sleep we woke up bright and early to go and get Cohen and bring him HOME!!!! We said goodbye to the Collegiana "the home" one last time. I'm not going to lie, I was pretty thrilled about it. I lived in the big city for 4 years in college and 2 years after and that was enough for me. I hate traffic and stoplights that take forever. I won't miss the bikers flying across the street on the Burke Gilman trail and not even looking to see if the oncoming car was going to stop. I won't miss the stoplight to turn onto Pacific that if you miss takes forever to turn green again. I won't miss paying for parking and getting parking tickets. I won't miss having to parallel park because I never have to do it and I'm terrible at it! I won't miss the twin bed with the mattresses that were so hard we had to go to Costco and buy memory foam. I won't miss having people stomp around in the room above us. I won't miss coming out the door and seeing the bus drive by without me. I won't miss being away from Danny and my family. I won't miss restaurants or fast food (well maybe Agua Verde...if you are ever over by UW go there and get the chicken tacos). I won't miss telling my mom and dad that the water at the home smells like a toilet and then coming back the next day and seeing that they had a "sewage problem". I won't miss living out of a paper bag. I won't miss waking up in the night to the sound of breaking glass, don't worry it was just a wine bottle not a car window like I thought.

 {Saying goodbye to "the home"}

{Minor hole in the floor from the plumbing issue}

 {Four months of junk stuffed into the car}

 

 If I ever want to eat out again I will miss the variety of living in the big city. I will miss the farmer's market a few blocks away. I will (do) miss sleep. I miss having back up for diaper changes. And of course we miss the nurses (more coming on that later) and the other NICU staff.

One Week at Home

Cohen has officially been home for one week. Today's weigh in: 10 lbs 5 oz! His newborn clothes are bursting at the seams. I will get over my denial that he can't possibly be moving onto 0-3 month clothes. It's so weird when we think about the days where we could never imagine him fitting into even the teeniest tiniest clothes. He is eating like a champ although he still pretty much only feeds at night. We will see his pediatrician next week and ask about letting him wake up when he wants to eat instead of just tube feeding him every three hours. We have been slow to make too many changes because we want to make sure he is still getting enough so that he has enough energy to support his heart and lungs.

His home health nurse came today and I had lots of questions about his feedings and his sleeping. It's hard for me to know what are "normal" baby things and what are still preemie baby things. But I feel like we are starting to get to know him better and make some decisions based on that. We will make another appointment with his pediatrician next week to talk about some of our questions. All in all, everything is going well! Cohen has started being a lot more vocal, making little baby noises and even crying once in awhile when he needs to let us know something. He has been loving his play time, laying on the floor and kicking his legs. Last night he even put one of his toys into his mouth all by himself! It's nice to start celebrating real baby things like kicking and eating toys instead of celebrating good lab work, oxygen weaning, and chest xray improvement (although those things were great too!)

Here's a video of our little fellow that we got last night during his play time. Kinda long, but he's cute so it's okay. (sorry if you tried to watch it before...I may have gotten distracted and forgotten to actually put the video on. Oops!)

Wednesday Eye Exam

Update: We are back home. We made it down and back without any issues! Nothing exploded, we didn't run out of oxygen, his feeding pump worked just fine. Cohen slept the whole way down, got his diaper changed on the eye exam chair, got the word that his left eye is fine and doesn't need to be checked anymore and his right one looks a little better but needs to be checked again in 2-3 weeks. We are pretty happy with those results. Someone wanted to stay up and play last night and then we left bright and early to get to the Dr by 9:45 so we are all ready for our naps!

Well we are heading to Seattle for Cohen's eye exam. We have packed way more than we need, just in case something happens along the way or they tell us he needs surgery or something. We are obviously still really hoping that he doesn't need surgery and that his eyes look better instead of just the same. We packed our bags just in case we have to stay...Say a little for prayer for us for the car ride, the Drs appointment and the car ride home!

Busy Mom

I hope you all enjoyed Cohen's post yesterday, he worked very hard on it. I knew when Cohen came home that I would be busy, but I never knew I would be this busy. I have always been busy with school and then working but this is a different kind of busy. My days are filled with things like laundry, bottle washing, milk mixing, pumping, bottle feeding, getting barfed on, checking tube placement, tube feedings, nasal cannula taping (and re-taping), oxygen checking, diaper changing, clothes changing, and doorknob wiping. And I love it. I really do. Of course I'm tired but I don't care. Danny says this is the only time he has seen someone wake me up and have me not be mad at them. I'm not the best waker upper, I always get up on the wrong side of the bed if it's too early. And I am NOT a morning person, Danny or any of my old roommates or coworkers will confirm that. As busy as we have been, we really are enjoying our time at home. The important things get done and sometimes the other stuff doesn't. But I don't think I will ever look back at my life and think about how I wish I would have had a clean house instead of snuggling with Cohen or reading him stories.

Gramma came over to babysit Cohen for a little bit so I could run to the grocery store. I also stopped by Carter's grave. I started thinking about how much busier I would have been with two babies. I wish more than anything I could know what that feels like. I know it would have been hard, but we would have figured out. We still have two sets of matching clothes hanging in the closet. I don't know what to do with them. They were Carter's. Even though he never got to wear them, they are his. I guess it will just take some time and some adjusting to the reality that we didn't bring both of our boys home. It's the whole mixed joy and sorrow thing again. We are beyond thrilled to have Cohen home, but just wishing that we could be snuggling both our boys.

Busy Boy

Hi everybody,

It's Cohen here again. Daddy went back to work today, so it's just me and mom hanging out. My mom is real busy making lots of phone calls trying to get all my Drs appointments set up and all the supplies we need delivered to the house. I'm pretty sure she thought she was done with spending all this time on the phone, but I guess she was wrong. We also went on a big walk all the way out to the mailbox. Mom put me in one of those carrier things and made me wear my pumpkin hat. She said it was really nice and sunny out but I didn't notice, I was too busy sleeping. I also went out for a walk in my stroller yesterday. I slept all the way through that too. Mom says we need to get some fresh air while we can.

{Out for a stroll}

I LOVE being at home! I have been sleeping a lot in my bassinet in my mom and dad's room. I still grunt all the time but they are getting used to it and are sleeping a little better. I sleep great, I don't know what their problem is! I have been taking most of my bottles during the day but I sleep through most of my feeds at night so I just get them put right into my tube. I think mom wishes maybe she could have one of these for coffee. She doesn't usually drink coffee but she was saying she might have to start. Otherwise not too much has been going on around here. I'm just enjoying laying around, pooping my diaper (sometimes while I am getting changed), making lots of laundry, reading my books and hanging out in the living room.

 {Reading books with Dad}

{This is my new favorite book. I love to stare at the pictures...especially the frog}

 {I'll be reading in no time!}

My home health nurse came today and brought us some more supplies. She also weighed me and guess how much I weigh? 10 lbs! I am wearing my first 0-3 month sleeper right now. While the nurse was here and mommy was feeding me my bottle I accidentally pooped and it went through my clothes and onto mom's pants! So we both had to go change. 

{10 lbs!}

 {Mommy calls me chubby, but it's all muscle, see?}

 {Do I have something on my face?}

Gramma spent a few nights with us so mom could try and get a little beauty sleep. I loved having her here. She's really good at rocking me and changing my diaper. Oh, and doing laundry. My Auntie Karen and Gramma came over yesterday and helped mom get my room all organized. Want to see pictures? I will show you pretty soon. It's still not quite as decorated as I want, but I love what they've done with the place. Mom says she is going to try and write more later but I've just been keeping her busy. She says she doesn't mind though. I hope you liked my pictures. I don't know if you've noticed, but my mom takes a ton! My mom says I get cuter every day so she just has to keep taking more. I'm off to play in my swing for a little while. Thanks for stopping by!
Love, Cohen