Not the End

Death is one of those things that just isn't final. In some ways, it is. Carter is gone and we will never be together on this earth. That's pretty final. I will never see his little hair sticking up allo over when I get him out of bed. I will never get to know if he would be naughty or a momma's boy. But death is also ongoing. I can't just walk away and close the door on the fact that my son is gone. I still think about him every day. I wonder who he would be and what he would be like. I wonder if we made the right decisions for him. We deal with the effects of death every day.
The other day, we had to take our kitty into the vet. He had been limping and acting funny for a few days so we decided to take him in. I was practically in a panic before his appointment. I was convinced that they were going to tell us we had to put him to sleep and I knew I couldn't do it. I couldn't make that decision and I couldn't watch him die. It seems sort of silly, I mean I love Russell, but I don't always like him. And here I was, in tears over thinking that he wasn't going to make it. It took me right back to the day the boys were born. When we knew our babies were sick. We hoped and prayed we wouldn't have to make "the decision". And there we were, being told Carter was dying when moments earlier we had heard his little heart beating on the monitor. I couldn't bear the thought of having to make that decision again, even if it was just for our kitty.

Thankfully, it turns out Russell just got in a brawl with another cat while he was outside, he's on antibiotics and he will be fine. We can move on. But how do you move on when it's your child? Dealing with death isn't over and it has changed our lives. We will never be the same people we once were. Although it's hard and there are seemingly constant reminders of death and how it has affected our family, it's also a reminder. Death isn't final. Jesus has conquered death and it isn't the end. If it were the end, we wouldn't have the hope of seeing Carter again and that is one of the things that I cling to the most. The joy and hope of being reunited with my son. I can't wait.

"I tell you the truth, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy...So with you: Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy." John 16:20&22

Chris Tomlin - I will Rise

There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say "It is well"

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

How To: NICU Care Packages

Since I have started talking about doing our second year of NICU Care Packages at Christmas, I have had several people ask me if they would mind if they "borrow/steal" the idea. I say, go right ahead!! I am definitely not the first person to deliver care packages and I'm not sure it's even my idea to steal. I've also had questions about how we go about getting everything set up, finding donations, and putting the packages together so I thought I would write a little post about it in case you are interested in doing something similar. The more the merrier, I think it is wonderful that so many people want to help out whether with our packages or with their own hospital. Here's our list of the things we are doing/have done to get everything ready:

1. Talk to the social worker/charge nurse at the NICU you are interested in donating to. I wanted to make sure that I wasn't breaking any hospital rules or that I wouldn't overwhelm staff by showing up with 40 care packages. I wanted to make sure if we were going to put the work into it that we went about it the right way to make sure they got to the families.

2. Decide what you want your packages to look like. To decide what we wanted in ours, I tried to think about the things I would have liked or wished I had while spending so much time in the NICU. Our list includes these things:

Small lotions (preferably unscented)
Chapstick
Small/Fun Size candy
Snacks (Instant Oatmeal, protein bars etc)
Small notebooks
Hot Chocolate
Hand Sanitizer
Preemie Baby hats (new, knit, crochet, or sewn in preemie sizes)
$5 Starbucks gift cards
Emergen-c/Halls Vitamin C drops
 Granola Bars
Pens
Kleenexes
Tea
Sample size shampoo/conditioner
Small children's books
A list of resources for NICU parents (websites, blogs, books, etc)

I wanted to include things for mom, as well as things that would help the parents bond with baby (books, clothes/hats for baby), which can be difficult in a NICU setting. We also included practical things like snacks and hand sanitizer.

3. Rally the troops. This is just not possible without the support of family, friends, and even strangers. Get organized and then put the word out there. You may be surprised at how many people want to help out. Use facebook, your blog, or email to share what you are doing. You could also involve church groups, Bible studies, girl scout troops, school classrooms, etc. Make your "wish list" easily accessible to people and consider making an Amazon list that people can either use as a guide or use directly to purchase and ship items right to you. You could even set up a specific facebook page for your volunteers so that you can show off donations and update people on needs/progress.

4. Have a place to gather and organize supplies. Things add up quickly and can get a little overwhelming as they come in. We keep most items in a separate box so that when it comes time to package up the items we can just grab one of each and put it in the bag.

5. Host a get together to put the packages together! Even if people are unable to donate, many are willing to help put everything together. We only had a few people last year but it went quite quickly once we got into a little system.

6. Deliver the packages! Depending on how your NICU is set up and the staffing, you may or may not get to actually deliver the packages to families. Last year we just dropped them off and the staff handed them out. We would have had to get permission from every family to bring them a package and it just sounded time consuming and difficult for the staff. I was happy to drop them off and let them play Santa. This year, there is a better space where we could set up outside the NICU and we are hoping to have NICU graduate families there to visit with and support current NICU families and hand out care packages. 

If you end up with extra things, make a few extra bags! The NICU kept the extra bags and just handed them out as new babies/parents came to the NICU. They also took some of the packages over the L&D for some of the moms on bedrest there, which I think is awesome.

Have fun!!

NICU Care Packages 2012

It's that time of year again!! NICU Care Packages! Last year we had this little idea to take a few care packages in to the NICU for parents spending their holidays in the hospital at UW Medical Center. While we were there for 4 months, we never spent any major holidays there. I can't imagine how hard that must be to not be able to be at home and with family. Our hope is that these care packages can bring a little bit of comfort and joy to families. We will be making 50 care packages to bring to the NICU families at UW.

 

Last year, we did "Stuff the Stockings", which I loved because stockings are one of my favorite parts of Christmas morning. However, this year I just don't see myself having the time to make a bunch of stockings. The contents of the care packages will be very much the same, but we will just be doing gift bags to simplify things a little.

This is our "wish list" of items to be included (the things that are crossed out are things we have already received):

Little lotions
Chapstick
Small/Fun Size candy
Granola Bars/Snacks/Gum
Emergen-C/Halls Vit C Drops
Small Notebooks & pens
Kleenexes

Hot Chocolate or Tea
Hand Sanitizer
Preemie Baby Hats (new, knit, crochet, or sewn in preemie sizes)
Small Blankets (new)
Sample size shampoo/conditioner
$5 Starbucks Gift cards
Pink or Blue Gift Bags
Small children's books 

Because of some very generous friends of ours, we already have enough of a few items!!! We were completely overwhelmed with the kindness of our family, friends, and strangers in helping out with this project last year. We were able to make more care packages than we had anticipated! Our wonderful friend Theresa is already working on some adorable crocheted little outfits for babies and our other friend Angie has already collected and donated some equally adorable tiny preemie outfits.

 {All of last year's donations. Amazing huh!?}

The response was so wonderful last year that in addition to the 50 care packages, we are also hoping to be able to donate a few extra packages for families in need. We are hoping to get some diapers, wipes, baby wash, and maybe some preemie outfits (new or gently used).

If you are local, let me know if you would like to donate and we can arrange to pick up/drop off any donations. If you aren't local, don't worry! We have a Wish List on Amazon, you can pick what you want to donate and have it shipped directly to us! We also have a little facebook page for the project if you are interested in keeping up with our needs and the progress. Thank you all in advance for helping out with this project. There's no way we could do it without you.

Capture Your Grief: Day 22, 23 & 24

Day 22. Place of Care/Birth The place that looked after your you whilst you were pregnant. Share a photo of those who took care of you and your baby. This could be a midwife/doula/friend/partner.

The boys were born at UW in Seattle, 2 hours away from home. I spent a few weeks there on bedrest and then it was our home for the next 4 months while Cohen was in the NICU. 


Day 23. Their Name/Their Photo If you feel comfortable, share a photo of your baby/ies/child/ren who you are remembering this month. If you do not have photos, you could use an ultrasound image or something that represents them.

The sweetest little feet you ever did see. I remember when he was born thinking how big his feet were and how long his toes were. And yet they are so itty bitty. I made one of these for Cohen for his room and I made one for Carter to put in his memory book as well.

Day 24. Siblings This could be done two ways – your could photograph your own siblings and post about how grief has affect them or you can post about your other living children. I know that not everyone has living children but I felt it was important to include the children who are left here to grieve their brothers and sisters. Capture a sibling, niece or nephew’s grief. Maybe you could share a drawing they have done or even just a photo of them holding something that represents their brother or sister that they are missing. Give them a voice here.

Cohen isn't old enough yet for us to know how all of this affects him and how it will play out in his life. We know that we are going to talk about Carter and he will always be a part of our lives. But we don't know how Cohen will choose to handle it all. I wrote a little about raising a twinless twin on a previous blog post.

Finding Purpose

I have been thinking about this for some time and I've had several other people ask me about it. How do you find purpose in all of this? How do you make something good out of something terrible?

For me, finding something that gives me a purpose and direction has been wonderful. And healing. And wonderfully healing. After Carter died, I felt a little bit like I was lost and wandering. I knew that I wanted to do something positive with everything we had been through, I just didn't know what. The death of a child is completely devastating and I knew that it was something that I could let bring me down (besides the normal grieving, I totally support the grieving process). But I didn't want it to become my life. I needed to make something more out of Carter's life. The time and energy that I never got to put into raising and loving him, I needed to put toward something else, something that mattered to me.

For me, this something to drag me out of the darkness has been diapers. Lots and lots (and lots) of diapers. Teeny Tears has donated over 10,000 diapers, and we have contributed around 1300 of those diapers. Teeny tiny diapers, and little bitty diapers in all kinds of colors and prints. It lets me do something constructive with my time. When I feel like I need some "Carter time" or I'm having a particularly rough day, I make diapers. It gives me the chance to feel what I need to feel while moving forward at the same time. I hate that there is even a need for these diapers, but my prayer for each little one is that it can bring some family somewhere even the tiniest bit of hope. And that it can help them to know that someone out there cares about them and thinks that their baby matters and is just as important as any other baby.

 {Cohen loves to help pick out the fabric}

The other cool thing that has happened is that as I work on these projects with my family and friends, they become a part of the process. They see the teeny, tiny diapers and realize that there are tiny babies that are deserving of these little diapers. And they see how many diapers we are making and they get a little glimpse of the fact that there are a lot of families that lose babies, it isn't an isolated thing. It makes me feel so loved and supported to know that I have people in my life willing to take on this project and help out. It's hard to to talk about babies dying and it can be uncomfortable. But, I have found that this makes an easy way to share and work on something together without having to just sit and stare at each other. This way, it just feels more natural and if anyone wants to talk about it, we do, if not...we make diapers. And I am so incredibly grateful for my friends who take fabric home and cut out diapers and for the people who drop off flannel donations at our local fabric store and for the store who is willing to collect the donations for us. It really is a wonderful thing.

 

 {Diapers waiting to be ironed}

The other thing we have taken on last Christmas and again this year is taking care packages to our NICU in Seattle. The diapers are for Carter and the care packages are for Cohen. Something for each of my boys. A small way to give back and to tell them that their lives are important. I want them to know that I am so thankful for each and every moment that I have and had with both of them and that we can help other parents and babies too. I remember last year aftert taking on the care packages that I kind of wondered what I had gotten myself into. I had started with the idea of just making a few and taking them to the hospital. Then I got word that we would need to be able to offer a care package to every family currently in the NICU. Makes sense, but where on earth was I going to be able to find enough things for 40 care packages in a few short months!? And then the word got out, and people started helping. And helping and helping and helping. And we ended up meeting and exceeding our goal. And it was awesome. The love and support we felt still warms my heart. People who didn't know us, or hadn't had a preemie, were willing to give of their time and resources to help out. (More details on NICU Care Packages 2012 coming soon).

{Diapers in memory of TTTS angels}

 

In the end, I feel like it is me who has gotten the most out of all of this. Through wanting to do something to make sense of our loss and to keep myself busy, I have been given great things. Love and support and new friends. I have been continually amazed at people's generosity and willingness to help. I had no idea that it would be a continual thing or that anyone would want to help out. It has been so healing for me to be able to work on these little diapers and the care packages. It has been a way for me to make sense of things. Not that Carter's death with ever really make sense, but it helps me make sense of the "what now?" part of grieving a child. What am I going to do with my sadness and my grief? For now, and probably for a long time, I will carry on with my little diapers. So here I am, trying to make sense of my life, one tiny diaper at a time.

An All Over Monday Update

Thanks for sharing your tips on the "I need sleep" post and on the "Appointments" post. Sometimes being a mom is so hard and it's nice to feel supported.

Alright, time for a little life update. It feels like we've been so busy!

 Cohen had his last day in the church nursery on Sunday for quite some time. Hopefully we will be able to beg someone to come and stay at home with him once in awhile so we can still get in to church. We tried sitting in the back of church with him and he is just way too busy and too loud.

We are setting up a time to get our family pictures taken and we are really excited.

Cohen is still active and busy as ever. He's transitioning from two naps to one (and back and forth again). He hasn't been sleeping that well at night, but I think he is just sensitive to changes in his routine and likes to know that we are still here. Sometimes a baby just needs his mom and dad, and I'm okay with it (although tired). I think he is really close to walking. He is taking steps between us and will even let go of the couch to take a few steps to one of us. He walks around with anything that he can push...chairs, tonka trucks, tupperwares, his little walker toy. He has this little game where he will pull up to stand on one of us then get one of our hands to hold onto and then put his arm out and reach for our other hand so we can walk him around the house. Again and again. Our quest to teach him baby sign language still hasn't gotten anywhere, he just doesn't seem interested. He still LOVES to eat and generally eats anything in sight. We are so thankful for this as we know there was a huge potential to develop oral aversions because he was intubated for so long and just had a lot of negative experiences with his mouth when he was so little.

 {Out for a fall walk. Love the changing seasons and this boy!}

 We've still been working on diapers. My mom just finished her first hospital donation that she did all by herself! We are having a little diaper get together soon as we now have over 600 diapers to make. We also dropped off over 100 diapers to UW when we went down for Cohen's appointment. We were able to donate these diapers in memory of a baby boy who was born and passed away there recently. His mom received a diaper for him while she was at UW and she found her way to the Teeny Tears group and is now involved in making them herself. It gives me chills.

{We got to meet up with Eli and his mom for a quick playdate}

 Somewhere in there, I made this little quilt for our friends who are having their first baby soon. I think it turned out pretty cute. I made sure to leave a few mistakes in it, like the Amish do, so that she would remember that nobody's perfect.

Other than that, it's the same ole, same ole. Mr. Stinkers still stinks, our house is still messy, Cohen is still incredibly active. Just how we like it. And when I get back into doing Fess Up Fridays, I have a lot of things to confess. And lastly, here is a video of the young master practicing his walking (and eating leftover breakfast off the floor). Happy Monday!

A Letter from Some Tired Parents - Please Help!

Dear People,

I need some advice. Cohen used to be a good sleeper. Like really good sleeper. Sleep 12-13 hours through the night kind of good. Starting a few weeks ago when he had his cold, he stopped being a good sleeper and started waking up throughout the night. Some nights he still sleeps okay but sometimes he is up 5-6 times a night crying.

We've tried letting him cry (it just gets worse), we've tried going in and giving him a quick hug and laying him back down. We've tried rocking him (he goes to sleep, but still seems restless) and then we lay him back down and he screams again. He sleeps with a fan on and he has a little night light in his room.

Last night, out of desperation, I took him into our bed with me. And he went to sleep!!! I'm totally surprised because that is the last place I ever thought he would sleep. Bedtime is serious business for Cohen. He generally doesn't want to be rocked or snuggled, when it's bedtime, it's bedtime and he wants to be in his crib. On the rare occasion that he did wake up in the past, we could snuggle him real quick and easily put him back in bed. Now, even if we snuggle or rock him he keeps crying. It's like he's awake, but he's not awake. And he seems very restless.

Now, I don't want to support his bad sleeping habits if he's just being a turkey, but I also don't want to ignore him if he needs something. I don't know if he's having bad dreams or if it's something else. Helllllllllllllllllllllllllllllllllllllllllllp. I like sleep. Really like sleep. Like Cohen used to.Thoughts? Advice? Sympathy? :)

Thank you!!
A Few Tired Parents