Words

I have debated writing this post because I don't want it to be a negative thing or for anyone to feel bad if they have said or done any of these things. My goal in writing this is to try and help others know what to say, or not to say, to help others in difficult situations. Having a child in the NICU and losing a child are both difficult things. People want to comfort and help but often times they just don't know how. I know that I have probably said some of these or something similar at some point in my life because unless you have been through it, it is just difficult to know what to do or say. So I'm hoping this can be helpful. Please don't let this discourage you and lead you to say nothing at all. Even if you say the "wrong" thing, we forgive you, we just want to know that you are there for us. If you don't know what to say, just listen, hold a hand, or give a hug.


What not to say:

My Uncle/Aunt/cousin/dog/sister-in-law twice removed had a baby who was born at X amount of weeks and now he is completely normal. I know these kinds of statements are supposed to be reassuring, but one thing I have learned through all of this is that reassurances aren't always helpful. I had so many people tell me that everything was going to be fine with the boys, and it wasn't fine.

Also, every story is different and every story is important. I just wanted to say yeah but this is my story and my baby. It almost feels like one upping. It feels like someone saying "Yeah your story is nice, but listen to this story about this other baby who was born even earlier and went through even more".

The third part of this sentence also bothered me. I really am glad that the child you know turned out "normal" but even if Cohen doesn't turn out "normal", it doesn't change my love for him. It doesn't matter to us if he doesn't hit all his milestones exactly as every other child does. Our reality is that most likely, he won't, and we are okay with that. 

I know what you are going through. Unless you have had a NICU baby or lost a child, you probably don't know. The fear, joy, heartbreak, questions, and the unknowns are like nothing I have ever been through before.

Don't worry, everything will be fine. Like I said before, I had many well meaning people say this to me and I really came to resent it. Of course we hope and pray everything will be fine, and in our hearts we really want to believe everything will be fine, but that's not always the case.

God needed your baby/God needed another angel. No he didn't, these things happen because we live in a fallen world. God doesn't need anything.

Twins are a lot of work, think how much harder this would have been with both boys. Again, I don't care. I would have done it if there were 10 babies! I want to know what it is like to have twins. I want to know how hard it is. I don't care if a double stroller is hard to get out of the trunk and push around. I don't care if two carseats are hard to put in the car. I don't care if we would have gone through twice the number of diapers. He was my son and I would have done anything for him, no matter how hard. It couldn't have been harder than what we are going through.

You can always have more kids. When the time comes, yes we can. But they will never replace Carter.

At least you got to keep one baby. We did, and we are so thankful, but we had two babies and keeping one doesn't ease the pain of not having both.

Things that are helpful:

A lot of times there aren't words that will take away the pain. But there are things that are more helpful than others.

I am so sorry. 

I am praying for/thinking of you.

I don't know what you are going through but it must be so hard.

I don't even know what to say. That's okay, thanks for being honest. 

If the family has lost a child, call the child by name if he/she had one. Ask things about the baby, birth weight, who did they look like, etc. One of the most painful things for me was when people didn't acknowledge Carter. It made me feel like he didn't matter. It might bring some tears, but for me I am always so glad when people ask about him or to see his pictures. 

Help celebrate the small things. In the NICU, everything that most consider a small thing (the first time baby pees, opens his eyes, gets to wear clothes etc.) is a big thing. When you don't have much to hold on to, these little things are important. 

Congratulations. I can probably count on one hand the number of times I heard this after the boys were born. I realize it was a difficult situation and may not have seemed appropriate, but our boys were still born even if it wasn't the way it usually goes. 

And if words fail, as they may, hold a hand, give a hug and just listen. You don't have to have the perfect thing to say, just be there.


Was that helpful? Again, I don't write this with the intention of offending or hurting anyone who may have said these things to us or others, I just want to try and someone else's difficult situation a little easier. 


*Since writing this post, I have come to a little bit better of a place. I know that people genuinely want to help but don't always know what to say. And that's okay. I try not to hold it against people, because they truly don't know what it's like. And I forgive the people who say these things and I trust that they have good intentions when they say things*

By the Handful

Cohen has officially become a formula fed baby. His nurse said to watch him because sometimes they can get constipated when they make the switch. The other night Danny had put Cohen to bed and so the next day we had this conversation:

Jana: Did Cohen poop last night?

Danny: Yeah he did.

Jana: Well how much was it? Was it just a little streak or a real poop?

Danny: It was about a handful....

Should I be concerned that my husband is measuring poo by the handful? Or should I be more concerned that after he told me it was a handful I asked if it was my hand, his hand, or Cohen's hand?

Thanksgiving

We had a pretty good Thanksgiving. It hit me pretty hard that we were missing a part of our family, but we had many moments of joy too.

 {All tucked in and ready to go watch Daddy play football}

The morning started off with Danny going to play in what has become the annual Thanksgiving morning football game. This year the boys played over at the high school and had quite a few people (and one very large dog). It was freezing cold out and raining, but I packed up Cohen and took him to watch his daddy play some football. He never came out of his stroller and was snuggled in quite well. He was probably the warmest out of all of us. I hadn't anticipated how cold it was going to be so I texted my sister who was on her way and she brought me gloves and coffee. Thanks Karen! Christine showed up with the boys soon after and the cousins had fun playing and running around the track while Cohen slept in his stroller.

 

 {The boys on the field}

{Joel, Josh, Danny}

{Me and my niece Michelle}

 {Jordan watching Cohen}

We came home for a little bit to shower and get dressed for the big meal. Cohen was starting to get ready for his big afternoon nap so I took him over to my parents. I figured if nothing else, he could sleep and we could visit and if he was really fussy when he woke up then we would have at least got our visiting time in while he was napping. He did take a nice long nap and when he woke up he wasn't fussy at all.

 {Even though Cohen wasn't allowed out of the room, there was no shortage of attention}

 {Gramma had her room all set up for Cohen with toys, blankies and a bed}

We put him in my mom's room with the kiddy gate up so no small people could get in. We had the hand sanitizer outside the door so anyone that went in could be sure and clean their hands. He did really well all day for being stuck in one room. He got in some good snuggle time with Karen and Christine. We let him come out for a minute during Thanksgiving dinner before we sent him back to his isolation. I don't think he really minded though.

 

 {Making myself useful and fixing the holes in Dad's socks}

While the boys were watching football the girls got to work cutting out and sewing some stockings. We got a few done and lots cut out. My niece Michelle even made one. Her first time sewing!

 {Checking on his fantasy football scores during the games}

{The crew hard at work}

After Thanksgiving dinner he got to break off his turkey bib to rock his reindeer sweater. We got him this a little while ago and I thought he would outgrow it by Christmas so he had to get his use out of it.

 {The boys playing basketball with Grampa outside in the rain}

{Carving the turkey}

 {Cooks in the kitchen}

 {Thanksgiving bottle from Auntie Karen}

 {Family}

 {After dinner reindeer sweater}

We had a good day, even though it was hard at times. I am so thankful for my family. They have done so much for us this year and we are so glad to have them.

Not Ready

I love Christmas. I usually start decorating before Thanksgiving. This year, I'm not ready. My boxes of decorations have been sitting out waiting to be put up, but I just haven't done it. I keep looking at it and thinking I should put it up, but I'm not ready. I'm not ready to put up our stocking holder and have to decide whether I put up a stocking for Carter or not. I don't know how to celebrate Christmas with my baby gone. I have tried to decorate a few times but nothing looks right so I put it away again. I want Carter here for Christmas and I also want Christmas to be perfect for Cohen, but I can't have either. Maybe one of these days I will be able to bring myself to get ready for Christmas, but right now, I'm not ready.

Another Stocking Update

Tired of hearing about stockings yet? Well, I have another update anyway. We would like to have everything in by Dec 3, in one week. The things we are collecting had taken over my entry hallway so I had to move them into another room.

If you still want to donate something we still need:

Starbucks or restaurant gift cards
New or gently used children's books
Small lotions
Small notebooks or post its
Kleenex travel packs
Hand sanitizer
Stockings

If you prefer online shopping, don't forget about the Amazon Wish List.  This has been a nice option for people because you can ship it directly to us.

Thank you all so much for your help, we really appreciate it. I am slowly but surely working on stockings. More slowly than surely actually. If anyone wants to help out in the stocking department it would be much appreciated.

Coming soon: Cohen's first Thanksgiving

iPood

Happy Thanksgiving!

We have so much to be thankful for this year, it's hard to know where to start. We are thankful for Cohen and Carter. We are thankful that we can dress Cohen, change his diaper, and snuggle him whenever we want. We are even thankful that we get to get up during the night with him. We are thankful for every single obstacle he has overcome from kidney failure, premature lungs, being on a ventilator for 2 months, infections, chronic lung disease, his PDA, and an enlarged heart. We are thankful for all of his progress, whether it happens according to what he "should" be doing or not. We are thankful for everything he does. We are also thankful for Carter, who gets to be with Jesus. We are thankful for the time that we got to spend with him, counting his fingers and toes and talking about how perfect he was. We still have an ache in our hearts for him, and we miss him every day, but we are thankful that we have the hope of seeing him again some day. We are thankful that the Lord gave up his son so that our son gets to be with him in heaven.

  We are thankful for the support and love we have received from family, church family, new friends, old friends, and even strangers. We are thankful that we have a chance to give back to others with our Stuff the Stockings project. We are thankful for egg nog and peppermint ice cream. We are thankful for jobs, food to eat, and a warm house to call home. We are thankful for opportunities to share about God with others through our story. 

Happy Thanksgiving to all of you! We hope you enjoy the day with your loved ones.

Shh....Cohen's Christmas Presents

I can't believe it's almost Thanksgiving. Time has been flying by since we have been home. I think since we were gone for so long it seems like time is going even faster and this little boy is getting so big so fast.

 {We had to cut Cohen's onesie off him the other night after a large diaper explosion}

This morning I took Cohen in for his baseline chest x-ray. As we were checking in someone recognized us and came to say hi. She said she knew about Cohen because someone had been showing off pictures of him in town. Cohen is a little celebrity! Okay maybe not, we just live in a small town. We hope that as people have heard and continue to hear his story that they will also see God and how great he is. We are thankful that our story has provided us with an opportunity to share with people about all the things God has done in our lives, even in the midst of pain and sorrow.

I took Cohen back home and did some chores and put him in his crib for a little nap. Gramma came over and I snuck out of the house to go on a little lunch date with Danny in Bellingham. We were instructed to be back before midnight. Ha, yeah right, I'm tired after an hour out of the house nowadays. Cohen slept the entire time we were gone and was very well behaved for his Gramma. Thanks mom for letting us get out of the house!

 {Look who graduated from his bassinet to his pack n play}

If you still need ideas for "Stuff the Stockings" go browse the $1 section at Target. I got a few pairs of Christmas socks (they are kind of my thing) and also some small toiletry/makeup bags to put in some stockings.

Speaking of, I got 4 packages on my porch today! My mom kept texting me whenever another one would arrive. I got home and opened them right away to find some surprises for the stockings. I get so excited opening the boxes to see what is inside. I know the families are going to be really excited to get these gifts! We would like to be able to offer a gift to every family so we have officially upped our goal to 30 stockings/gift bags (in case someone doesn't celebrate Christmas). Oh, and also, if you have kids at Vossbeck, Karen has set up a box at the school for donations and is sending some flyers home with the kids so that is another way to donate.

Cohen's Christmas presents also arrived today so it was a really big day. Don't tell him what he's getting. Aren't they cute?? Now I just need to get someone to put up a shelf in Cohen's room to put his little sign on.

Thursday Thank You's

 Ok, I missed last week for my "Thursday Thank You's" so I am making up for it now. I can't keep track of my days anyway, so I am pretending it's Thursday! This thank you is for all the wonderful people that took care of Cohen and I during our hospital stays. I had some really wonderful nurses and doctors who took care of me the 3 weeks I was there before the boys were born and obviously we had some great people who took care of Cohen for the first 4 months of his life.We appreciate all of you so much! (except for the Dr who came in to check my cervix in the middle of the night after I had taken Ambien, I did not appreciate that).

Thank you for taking such good care of me during such a hard time in my life. Thank you for bringing me heating pads for my sore back. Thank you for bringing me sleeping pills at 8:00 pm every night when I just had had enough of the day. Thank you for spending (literally) hours chasing the boys around trying to catch them on the monitors. Thank you for asking the doctors to give me a break so that I could get at least an hour of sleep. Thank you for arranging for me to sit in the jacuzzi tub when you knew I was so uncomfortable. Thank you for giving me a new name band on my birthday so that I got one that said I was 26 years old. Thank you for writing the day and time on my white board when I couldn't keep track.

Thank you for not laughing at my permanent bed head, now that I look at the pictures, those were some pretty bad hair days. Thank you for encouraging me and telling me that I was doing everything I could for my boys. Thank you for being calm when it was time to deliver the boys. Thank you for coming in during the night to do my c-section, I can't tell you how glad I was to have a familiar face that I knew and trusted! Thank you for letting me cry (and cry and cry). Thank you for letting me hold my baby as long as I wanted. Thank you for bringing him a hat to wear. Thank you for holding my hand. Thank you for letting me stay on the antepartum floor instead of moving me to the postpartum floor where mommies actually got to be with their babies.

Thank you for taking care of Cohen. Thank you for staying close by his side. Thank you for going to the doctors on his behalf. Thank you for being there for him when we couldn't. Thank you for explaining things to me over and over and over. Thank you for putting in the world's smallest catheter. Thank you for being excited when he finally peed. Thank you for showing me how to "hold" Cohen in his isolette. Thank you for teaching me how to change his teeny, tiny diapers and to work around his wires and tubes. Thank you for telling me things in a way that we could understand. Thank you for fighting for my baby. Thank you for making him signs and celebrating his milestones with me. Thank you for letting me cry. Thank you for letting me be mad. Thank you for making me grilled cheese sandwiches. Thank you for taking pictures and videos of Cohen and sending them to us the first time we ever left Seattle for a night. Thank you for not judging me when I called 50 times to check on him. Thank you for making me laugh. Thank you for entertaining me in the countless hours I spent in the NICU.

Thank you for telling me that I needed a break and reassuring me that you would take care of Cohen while I was gone. Thank you for being honest. Thank you for snuggling Cohen when we weren't there. Thank you for rocking him, singing to him, and reading him his stories. Thank you for putting on lullabies for him in his room. Thank you for taking pictures. Thank you for listening to my concerns. Thank you for checking on Cohen on your days off. Thank you for letting me show you pictures of Carter. Thank you for making dolphin noises for Cohen, even though they kind of scared him. Thank you for taking care of me as well as Cohen. Thank you for crying with me. Thank you for not letting me throw my pump out the window. Thank you for not letting me throw my pump out the window the second or third time either. Thank you for believing in Cohen. Thank you for being a part of saving his life.

Stocking Update

Well, the "Stuff the Stockings" project is in full swing! We have lots of people volunteering for various things and we are so excited. I thought this was just going to be me collecting a few things and taking a few stockings in. But we have had a lot of people wanting to help and it has been so fun. I have made an updated list. If the item you were going to donate is crossed off, don't worry, it's probably just because you said you were donating it! And we will take whatever you want to give and put it to good use.

We have decided that if there is stocking overflow we will take some stockings over to antepartum where I spent 3 weeks on bedrest. Surely moms on bedrest over Christmas need a little gift too.

Thank you all so, so much for your response to this. Feel free to continue spreading the word about this project. Also, look around your house...I found lots of things (snacks, shampoo/conditioner samples, etc) for the stockings sitting in my own drawers and cupboards, just make sure they are new/unused! Also, I have updated the Amazon Wish List with my address so that it can ship here automatically.

Updated Stocking Stuffer List:

Little lotions
Chapstick
Candy
Protein Bars/Granola Bars/Snacks
Gum
Emergen-C (Since it's cold season!)
Maybe a little notebook for keeping notes about baby
Kleenex packs
Post its/Pens
Vitamin Water/Bottled Drinks
Hot Chocolate or Tea
Hand Sanitizer
Baby Hats and small Christmas blankets
Travel size shampoo/conditioner
Disposable cameras
Starbucks, Subway or Quiznos gift cards
Stockings or Gift bags to put everything in
New or gently used Children's books
Newborn Diapers/Wipes

A Happy Baby

This has been a hard week for me. I have been really excited about our NICU project and about Christmas coming, but I just know this year is going to be hard. We just had our last GriefShare last night and we talked about heaven. I think that was just what I needed. As you may know from my last post I have been having a rough few days. But, I know that Carter is safe in heaven and is loving it. I just have to remind myself that God is more than capable of taking care of my son and that I'm sure heaven is decked out for Christmas :) We were also given a tear bottle with this verse attached.
"You keep track of all my sorrows; You have collected all my tears in your bottle; You have recorded each one in Your book." Psalm 56:8

Just like God cares so much about us that he knows every hair on our heads, he also cares about our grief. He knows each of my tears and he has each one recorded in his book, which is probably a fairly long book. My pain matters to God and he is my comfort.

In other news, we went in to see Cohen's pediatrician yesterday. He is now 11 lbs 10 oz and 23 inches. That is a full 10 lbs 2 oz heavier and 10 inches longer than when he was born! Amazing huh? She is really happy with how Cohen is doing, especially with his feedings and weight gain. She asked us if we wanted to know where Cohen is developmentally. We said that we would be happy with anything he was doing, but that it would be nice to know what a "normal" 2 month old would be. Cohen is now 2 months old adjusted but he is acting like a 3 month old! And she told us that he looks like he is a happy baby.Yay! It's so nice to get such an encouraging report, it makes us feel like we are taking care of Cohen well.

Right now Cohen loves to eat his hands, wave his arms around and hit his toys, and stand up when we hold him. He is making lots of fun noises and he loves to look at our faces. Once in a while he will even reach up and touch Danny or I's face and then will look at us like "What just happened?". I think he gets cuter every day and we love to see how much he is growing.

Stuff the Stockings update coming soon...

All I Want For Christmas

Today is World Prematurity Day. A day to remember all the babies that were born early, who have fought and won, and the babies who are angels. So thankful for both of my boys.

I also came across this line of cards called "Lost for Words". It is a line of really neat cards for parents who have preemies, lost a baby, cards for due dates, loss of a daughter, sister, grandbaby, twin, etc. I hope none of you ever have to use any of these cards, but if you come across someone else in one of these situations I think these would be really wonderful to send. Parents of preemies don't often get a lot of "congratulations" or cards when their babies are born so I think these would be perfect. They acknowledge the situation but aren't covered in baby rattles and rainbows because sometimes the situation doesn't seem appropriate for that. So often people truly are "lost for words" so I think it is great that these cards have been made. 

The other night Danny and I were laying in bed talking about what we wanted for Christmas. As you may know, I love Christmas so I usually start asking in October what he is going to get me. Not that I really care what he is getting as much as I like the anticipation of knowing Christmas is coming! This year things will be a little different.


All I want for Christmas is my son. For my boys to be together for just one day. For us to get to see them together as brothers, how they should have been. I want to plop two babies in front of the Christmas tree and take their picture. I want two stockings to fill and two boys to put into their matching Christmas jammies.


I know Christmas isn't going to be easy. It is my favorite holiday and I look forward to it all year. Someday I am going to be that lady that goes completely nuts and decorates every inch of her house. I know it's going to be hard for me to know that someone is missing during this season that I love so much. There will always be a little piece of my heart missing and and an ache for Carter. And also for Cohen. I am sad for what he is missing out on by not having his brother. His twin brother. I was so looking forward to getting to see and experience the special bond that twins have. Finishing each other's sentences, maybe having their own language, playing tricks on people and switching places. He won't get to have that.


All I want for Christmas is to have Carter here with us. I don't want anything else. He doesn't even have to be here for the whole day. Even for just an hour, although I know that would never be enough. I want a lifetime with him. Maybe I could get just a small glimpse into heaven to see how he is doing? To make sure he has a little Christmas tree with lights? To make sure someone fills his stocking? To make sure someone is reading him the Christmas story when he goes to bed Christmas Eve? To make sure somebody gets pictures of him running (crawling?) out of his room to the Christmas tree to open his presents? To see him play with his new toys?


Everybody tells me I am so strong and brave. I don't feel strong or brave. Tonight I feel like my heart is broken and that I don't want to have Christmas without my son. Yes, Christmas is going to be hard. Please continue to keep us in your prayers. As always, we appreciate it so much.

First Snow & Stockings

Well, it's snowing here so it seems like a perfect day to turn on the Christmas tunes and sew! We made a brief trip to Gramma's house, Cohen's first time there, for baking day. We sampled some Christmas cookies and had lunch with Gramma and Gramma 2 (my mom's best friend). Cohen is now taking a hopefully long nap and it's Danny's day off so he is doing a few chores around the house.

 {MMMM....we love baking day!}

 I made my first 2 stockings! Who wants to fill them!? We have been really excited about the response we have gotten for our Stuff the Stockings Project. We have some other NICU graduate's moms who are helping out, a Bible study, a Sunday School class, friends, Grandmas, Grandpas, etc who are all helping. It is really wonderful!

Our goal was to get 15 stockings made and filled and I think we will easily meet that goal. Maybe we should try for 30? I really better get sewing then. Here are some of the blankets Mom and I made on Monday. I also have 2 raggy quilts sitting on my couch waiting to be finished and one quilt top waiting for a backing.

We have several people donating travel size toiletries and lots of gum. A couple other people are making preemie hats, small hand warmers, blankets, Christmas ornaments for the babies, and even some burp rags.

Things we still need:
$5 Gift Cards to Starbucks, Subway, or Quiznos (These are all within walking distance from the hospital)
Hand sanitizers
Small lotions
Hot chocolate, tea, and Emergen-c or Airborne
Blankets (especially small Christmas blankets)
Stockings (purchased or made)

We have also put together a "Wish List" on Amazon if you need ideas or would like to purchase things online and mail them directly to us. 

Here is a flyer that Karen made. I have no clue how to put it on here as a file that you can download so let me know if you want me to send you the file so you can print it. It is posted on the NICU Care Packages blog if you want to see it. (Anyone know how to get it on here as a downloadable file?)

{And here is Cohen, sleeping for a cause. He was supposed to be waking up for his bottle, that's why he is half dressed. He wasn't interested in the bottle at all.}

As always, if you are interested in providing any of these things or have questions/suggestions, please email me jana.rinehart@gmail.com or nicucarepackages@gmail.com. Also, check out the NICU Care Packages facebook page. It is where most of the action is going on (where is all the blog love? :)

Cohen's Confessions

We have been a little busy around here with our "Stuff the Stockings" project. Mom and I made several blankets yesterday that I will show you soon! We are really excited about this.

Word has gotten out to a few people about this, so Cohen decided he better just come clean.

 {Do you see it?}

{How about now?}

Cohen sleeps in a pink swaddler! He out grew his boy ones that we had so I went in to get him a bigger one at the consignment store and they were all PINK. No white. No yellow. No green. Just pink. So pink it is. Anything you would like to confess to make Cohen feel better? :)

Stuff the Stockings!

Thank you SO much to everyone who has responded about wanting to help. I had put this post up and then shortly after there was a lot of care package activity going on on facebook :) I didn't really expect so many people to want to help. I thought I would just be putting a few things together on my own, but thank you SO much. I am really excited about it! I think it will be a really nice pick me up for the NICU moms, especially during the holiday season. So, I will try and get myself a little more organized. Our goal is to get 15 stockings together and stuffed. There is also a page at the top of my blog with info about the stockings. Some people have made a few more suggestions to add to the care package list so I am adding those here:

 Little lotions
Chapstick
Candy
Granola Bars/Snacks/Gum
Emergen-C (Since it's cold season!)
Maybe a little notebook for keeping notes about baby
Vitamin Water
Hot Chocolate or Tea
Hand Sanitizer
Baby Hats and maybe little Christmas blankets (if I get around to knitting/sewing them)
Sample size shampoo/conditioner
Disposable cameras
Starbucks Gift cards (maybe like $5??)
Stockings or Gift bags to put everything in

Ways you can help:

1) Get any of these things and if you are local I can pick them up or maybe we can figure out another way to get them if you are in the Seattle area. I have also made a "Wish List" on Amazon so even if you wanted to purchase something and send it to us that would work as well. Here is the link to the Wish List.

2) If you knit, sew or crochet...baby hats! See this post for links to preemie hat patterns. Or if you want to make some fleece, felt or other kind of stocking (or purchase them if you'd rather :) In our family, stockings are a pretty big deal. The stocking is actually my favorite part of Christmas morning....that's why I want to do stockings. But, there is always gift bags too.

3) Depending on how many of the packages we end up making, I may need help assembling things. So keep that in mind too.

I am really excited about this and about how many people want to help! I feel really good about being able to help out and encourage some other people. I know what a hard road it is and I want to do anything I can to help. I just keep walking around smiling and last night I couldn't sleep because I was so excited. I know this isn't about me, but it is nice to be doing something positive that I know will also bless others. Thank you so, so much!

Feel free to email me if you have questions or suggestions or want to help out...my sister also made an email address specifically for the "Stuff the Stockings" project. It is nicucarepackages@gmail.com and she has also set up a specific blog for this project. I know this is a lot of info but we are just thrilled about this project. We are working on getting a little more organized :)

NICU Care Packages

I know it's getting to that busy time of year where everybody has way too much to do. I also know what it's like to have a baby in the NICU and I know some of you do too. Sitting in the hospital day after day is tiring and stressful and can be lonely. I want to do something to help other NICU moms and maybe just brighten their day a little. I know how hard it is to have a baby in the hospital on a regular day but I can't imagine how hard it must be during the holidays. I LOVE Christmas and anything I would like to be able to maybe make someone else's a little better. We have been given so much love and support and I would love to be able to pass that on to someone else.

So, I am putting together some little care packages to drop off at the NICU for other moms (or dads :)
I'm thinking:

Little lotions
Chapstick
Candy
Granola Bars/Snacks/Gum
Emergen-C (Since it's cold season!)
Maybe a little notebook for keeping notes about baby
Vitamin Water
Hot Chocolate or Tea
Hand Sanitizer
Baby Hats and maybe little Christmas blankets (if I get around to knitting/sewing them)
Stockings or Gift bags to put everything in

 I'm going to try and start getting things together now because I know once Thanksgiving hits everything gets super busy. We have another appointment at Children's in December so I am thinking I will drop them off then. Anybody want to help? Have any other ideas of things to add? Let me know :)

*Updated to add:

If you knit, here is a website that has patterns for preemie hats

If you crochet, here is more patterns for preemie hats

I also thought it would be fun to put some of the stuff in the stockings. I'm telling you, I love Christmas so this is all really fun for me :) Here is the pattern I might use, again depending on how much time I have. If you sew, it is here or here's just an outline.

Well Dressed

Cohen takes his fashion very seriously. He is quite the stylin' little guy. Danny found this sweater vest in his trunk that I forgot I had gotten after Cohen was born. Of course I thought he would never be big enough to wear it and now it's almost too small!

 

{Mr. Serious}

{First Jeans}

Appointment Update

Cohen woke up bright and early this morning at 4:30 am because he was so excited for his appointments. Our first stop was to pick up Auntie Karen who came along to help out. Our second stop was the Woods drive thru for coffee. Then we hit the road for Children's. There really wasn't much traffic and it was a pretty smooth drive.

 {How cute is he!?}

Our first appointment was for Cohen to get his echo. He was very cooperative and happily ate his bottle while the tech looked at his heart. Then he got an EKG and we met with the cardiologist. The cardiologist told us that his is heart is now only slightly enlarged. He said it was almost back to normal! He also said that they didn't see a PDA! It finally closed on it's own!! Hooray! Cohen's EKG was also normal which is good since his heart was enlarged and can cause some EKG changes. We were very encouraged by Cohen's good report on his heart.

We had an hour between appointments so we found a spot without people around and sat and waited for our appointment with the pulmonologist. Cohen spent most of the day naked, wrapped in his fuzzy blanket because we knew we were just going to have to keep taking his clothes off for him to be examined. Cohen was well behaved the whole time, sleeping through his hour wait, eating another bottle when we got into his exam room, and then happily playing while he was examined. Dr W came in and said that he was happy with the progress that Cohen had made and with the report on his heart. We talked about his oxygen and he said that since Cohen's heart is still a tiny bit enlarged and he wasn't on any extra nutritional support other than straight breastmilk he was comfortable leaving him on his oxygen. He feels that the oxygen will help Cohen continue to grow by just giving him a little extra support so his body can use his energy for growing instead of working to breathe. The next step will either be going to wearing oxygen 12 hours a day or maybe just coming off of it altogether. We'll see!

Cohen will also get a chest xray from his primary care doctor just so that they have a baseline. At this point, Dr W said that he doesn't expect Cohen's xray to look normal with his lung disease. If, well actually he said when, Cohen gets sick they want to have something to compare it to so that a) nobody overreacts over something that is his normal and b) they will be able to tell if something has changed and is different.

So, we follow up with his cardiologist in a few months to make sure that Cohen's heart continues to look better and maybe even completely normal. We also follow up with the pulmonologist in 6 weeks. We also have ROP exams and a follow up with Cohen's primary care doctor in 2 weeks. Whew, lots of appointments. I will be glad when this all slows down. But, it's all worth it for our little mighty man.

Thankful Thursday

*My very sweet cousin has started a blog to help Cohen. She has such a kind heart. Thanks for helping Joeli! You can click here to see what she is up to.*

*Cohen has 3 appointments at Children's tomorrow morning. He gets an echo to see how his heart is doing, an appointment with his cardiologist, and an appointment with his pulmonologist. Please keep us in your prayers for safe travels and a long day for Cohen. Also pray that his heart looks less enlarged and that his lungs are okay!! Thanks*

It's November and Thanksgiving is coming, so Thursdays are now my Thank You Thursdays. The last little while in our life has been full of ups and downs but we really do have a lot to be thankful for. And since I won't be able to send each and every person who has helped us in some way (although I wish I could!)  I am hoping maybe these posts can serve as a thank you card to all of you that have supported us. This week (and every week) I am thankful for Danny.

When we got married and said our vows "for better or for worse" we had no idea what that would come to mean for us. We were clueless that before our 2 year anniversary we would be facing devastating circumstances and have to make incredibly difficult choices for our family. When we decided to start our family we couldn't have even imagined what the next 9 months would bring. We had visions of happy, bouncing baby boys that we would play out in the yard with and who would run around with their cousins. Instead, we were faced with what will probably be the most incredible challenge of our lives. We feel like we had to grow up about 30 years in the last little while.

Everything we have gone through has just further confirmed to me that I made the right choice. That God brought me Danny for a reason. He has been my strength and has literally held me up at times when I couldn't stand up myself. While I was on bedrest he was in charge of the cooking, cleaning, housework and working his regular job. While I was in the hospital he drove back and forth on his days off, often leaving the hospital in the wee hours of the morning to go to work from Seattle so that I didn't have to be alone. After the boys were born he continued working full time and making many, many trips back and forth to and from Seattle. Most of his time was spent working, driving, or sleeping. I know it was so hard for him to be away from his family during all of this but he was very strong through it all.

Danny lets me be me. He lets me be a goof. He lets me cry. He can always make me laugh. I am quite far from perfect but he never judges or condemns me. He knows who I am and he loves me that way. He is always patient with me when I have my grumpy pants on early in the morning or when I get too hungry. He reminds me of God's truths when I forgot and was overwhelmed by fear or anxiety.

This whole experience has taught us a lot about each other. We have learned that there are things that matter and things that don't. We have learned that we have been through the hardest, most painful thing we could ever think of and we made it through together. We have learned to be extra patient, gracious, and forgiving of each other.

I love you Danny boy, so so much. Thank you for being so strong. You are such a great dad to our boys, I can see it in the way that Cohen looks at you and smiles. Thank you for washing endless numbers of baby bottles and pumpers. Thank you for being my best friend. Thank you for letting me win when we play games.Thank you for working so hard to take care of us. I couldn't ask for anything more. We love you very much!

Together

On Saturday, for Cohen & Carter's 5 month birthday we took Cohen to the cemetery. Weird place to celebrate your birthday, I know. Even though Cohen has no idea what's going on I had been wanting to take him to Carter's grave. I wanted my boys to be together. I never imagined that we would have to be at a cemetery in order for them to be together. One of the biggest regrets that I have was that I never got to see my boys together once they were born. It's something that I think about often but know there is nothing I can do to change it. That chance is gone and it will never come back.

We got to the cemetery and took Cohen out of his carseat and let him put his little feet on his brother's grave. We put his little hand next to his brother's even tinier hand print. It breaks my heart that he will never know his brother on this earth. It was bittersweet to have my boys together. I was sad that it had to be at a cemetery, but glad that at least they have a place to go to be together. I also had this wave wash over me that I was so glad that we weren't there looking at both of our boys' graves. I just felt so thankful that even in the agony of losing Carter, we still had the joy of having Cohen. I'm not sure if I've mentioned this before, but there is a set of twins right next to Carter's grave. My heart has been so heavy for this family who lost both of their babies. I know how incredibly hard it has been for us losing one of our babies and I can't even imagine the pain of losing both. I think a lot of times the only thing that kept us moving was the fact that we still had Cohen and that we needed to keep fighting for him. We couldn't fall completely apart because we had to be strong for our baby who was in the fight of his life.

Cohen and Carter, we are glad we got to be together, we love you very much. Happy 5 months!

5 Months

I know I say this about every month, but I can't believe Cohen is 5 months old (on the 5th)! He is growing up so fast. That's why I don't feel bad that my house is a mess and the dishes are dirty. He is growing too fast and I just want to enjoy my time with him. We have waited to so long to hold him whenever we want and take him out for walks and snuggle him that there is no way I am going to choose house work over those things. We started out the 5 month birthday with some Saturday morning snuggles in bed. Then Danny made us waffles for breakfast. We did some chores around the house and then went through the Woods drive thru for some coffee and then on a special little outing that I will share about tomorrow. We came home for lunch and naps and then Danny made some M&M cookies (yes, I know I am lucky!)

Happy 5 month birthday little tough guy! At 5 months old:

- You smile AT your dad and I which makes us so happy
- You are eating between 2-3 ounces in your bottle
-You weighed in at 11 lbs 4.5 oz today!
- You like to wave your arms around and kick your feet
- You like to sit in your bouncy seat even though there are no batteries in it and it doesn't bounce
- You are starting to "talk" more and even cry once in awhile when you are extra hungry
- You wear size 1 diapers and 0-3 month or 3 month clothes
- You love to be held and often protest napping in your bassinet by refusing to go to sleep until the second someone picks you up. Luckily there are lots of willing arms to hold you! You do sleep in your bassinet at night with no problems, so mom and dad are happy.
- You had your first official babysitter (other than Gramma). Auntie Karen stayed with you so that mom could go to an appointment.
- You are such a sweet boy and we love you like crazy!

Sunday Song

This song is called "Rise" by Shawn McDonald. The first time I heard this song I was driving in the car, going who knows where, and I just loved it.  Throughout this journey I have just kept thinking to myself that there has to be something good out of all this. I don't believe that this is "God's will" but I do believe that God can bring good out of any situation. And I just keep hoping and praying that somehow, somewhere God will bring beauty out of our ashes. And that we will rise out of these ashes. That we won't stay on the ground forever. I know all of this wasn't for nothing. I don't know what it is yet, and maybe I never will on earth, but I just have to keep believing that God is using our story for good.

Yes I will rise
Out of these ashes rise
From this trouble I have found
And this rubble on the ground
I will rise

Yes I will rise
Out of these ashes rise
From this trouble I have found
And this rubble on the ground
I will rise
Cause He Who is in me
Is greater than I will ever be
And I will rise

Sometimes my heart is on the ground
And hope is nowhere to be found
Love is a figment I once knew
And yet I hold on to what I know is true

Yes I will rise
Out of these ashes rise
From this trouble I have found
And this rubble on the ground
I will rise
Cause He Who is in me
Is greater than I will ever be
And I will rise

Well I keep on coming to this place
That I don't know quite how to face
So I lay down my life in hopes to die
That somehow I might rise

Yes I will rise
Out of these ashes rise
From this trouble I have found
And this rubble on the ground
I will rise
Cause He Who is in me
Is greater than I will ever be
And I will rise

And it also reminds me of this verse:

"The Spirit of the Sovereign Lord is on me, because the Lord has anointed me to preach good news to the poor. He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord's favor and the day of vengeance of our God, to comfort all who mourn and provide for thouse who grieve in Zion --

to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor."

Isaiah 61:1-4

Today I am thankful that Jesus came to set us free and that he will heal my broken heart. I am glad that there will be joy and that sorrow doesn't last forever.

Scenes from the Home Front

This is what our house looks like these days...

 

{Oxygen tanks}

{Oxygen tubing around the house}

 {Bowl full of Vitamin C drops on the counter}

 {Main oxygen tank in Cohen's room}

 {Lysol wipes, Wet Ones, and Hand Sanitizer...please leave all germs at the front door!}

 {And one very cute little boy who is totally worth all of it}