Venting - CDH with one of the twins

>> Saturday, February 7, 2009

After having a really good week... Feeling good, hopeful, positive, etc... I woke up this morning (earlier than I wanted) and the first thing I thought about was Kamryn. Not that I don't think about them when I wake up and when I go to bed every day, but these thoughts were REALLY hard to think about. First of all, let me say that since we started this new blog, we have received love and support from not only friends and family, but from strangers who have been through this exact same thing. I can't even begin to describe how touched we are to hear everyone's stories, and how they dealt with certain situations. It truly helps us not only prepare for her birth with cdh, but also to prepare questions for the doctors that we're about to meet. I think my biggest stressor right now is thinking about both girls. I'm going to have one healthy newborn at home, and one in the NICU. How in the world am I going to manage that??? Then, that started the snowball effect of the "OMG's". I realized this morning that Brooke and Kamryn will not get to lay side by side each other until months after they are born, if they even get to lie beside each other at all. I realized they won't be able to touch each other, hear each other, look at each other, etc. When people come to visit me in the hospital, I'm supposed to have two babies in my arms, but I'll only have one. It kills me that everyone will be taking pictures of just Brooke, and not Kamryn, because bless her heart, she's going to be fighting for her life with tubes, needles and God knows what else going in and out of her. When will I get to hold her? When will she get to hear my voice??? I know that Shawn will be my hero, yet again, by going to the NICU with her and being with her as much as possible, when I can't. But, it's not supposed to be like that. It's supposed to be all of us in ONE room, oohing and aahing over the girls, and how they look alike, and how they don't. Which one of them looks more like us. Which one looks more like Hollie did when she was a newborn. I know that God's strength and love will get me through this, but right now, I feel pretty helpless.

Onto better thoughts... Last night, Shawn and Hollie went to their first Daddy/Daughter dance. Hollie got a brand new dress, and looked like a princess. She went with her best friend and her dad, so they had a ball. I think, from what Shawn told me, that Hollie and her friend danced more together, than they did with their own dad's. But, Shawn did tell me that they did the Chicken Dance together. Oh, I wish I could have seen that... Shawn will load the pictures later today. They're really cute! While they were gone, it felt good to get out for a little bit on my own. I went to Burger King and got a chicken sandwich, which I had been craving. And then, went to Mardels to get a gift, and some more music. It just felt good to take my time shopping around, and not worry about Hollie picking up things she shouldn't pick up, or ask me if she can have something, just because she saw it. I was on my own schedule, and it just felt good.

That's about it for me. Again, thank you to EVERYONE who has reached out to us and given their love and support. It just feels so good to know that we're not alone.

Love, Stephanie


Maxton's Mommy February 7, 2009 at 11:23 AM  

Hey Stephanie. I thought I would let you know of another mother who recently had twins, one with CDH. The other had some health issues, but pretty minor. I thought you might find their blog helpful as it is closer to your personal situation.. you may have come across it, but here ya go :
Praying for you

Tracy Meats February 7, 2009 at 11:45 AM  

Brooke and Kamryn are lucky girls to have a mom like you!! You will find the strength to be with both girls and Hollie too. Buy some disposable cameras to put by Kamryn's bedside, so nurses and her visitors can snap pictures at anytime, capturing those precious memories. Praying hard that Kamryn will fight her CDH. Even with Brooke not being there with her, I am sure they will feel each other in spirit. Twins have such a special bond. Stay strong and positive for your precious miracles, for they will fight for one another and God will be watching over all of you. Many prayers for Hollie too, for she is so young to handle all that is going to happen to the girls. She must be very excited to be a big sister!

Hugs to you,
Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

Courtney February 7, 2009 at 12:19 PM  

Hi Stef,

I was remembering some of the songs we used to sing in Colorado so many years ago when we were kiddos. I thought this link(copy and paste it in your browser) might give you some beautiful memories and hope and comfort for what our Father in heaven promises for us. You are amazing and Hollie, Kamryn and Brooke are so lucky!

I love you, Corky

Stephanie February 7, 2009 at 1:52 PM  

Ashley - Thank you so much for that link. I was wondering if there was anyone out there with twins, one with CDH. THANK YOU!

Tracy - What a great idea about the disposable camera. I will definitely do that. Thank you!

Courtney - Girl, that brought back big time memories. Can't wait to see you tomorrow. It's been way too long!

And yes, Hollie is soooo excited. She told me just this morning how much she wants to see them. She hugs my belly daily, and rests her head on my stomach. I tell her to talk to them, but she gets shy. I'm sure that will change. She doesn't know about Kamryn yet; we're still trying to figure out when to tell her and how! Pray for us on that one.

Love to you all.


Craig and Kristi Kuehl February 7, 2009 at 3:59 PM  


I can ALMOST totally relate. This journey is a rollercoaster of ups & "downs". The not knowing--the things, that we as Mommies and Daddies, sometimes take for granted. I have just recently found myself going to that "I am being short-changed" place. I have tried really hard not to go there and count my blessings, but as I get closer to delivery I do have my sad days. Sadness for the things I am NOT going to be able to enjoy--holding him, breast feeding him, looking into his eyes. BUT when I think of the things I WILL be able to do when he comes home and the LIFETIME of things I will not be "short-changed" on I again feel blessed. The hardest thing is to accept that God is in control, and that we will get thru this. Don't worry about Brooke & Kamryn's bonding--like Tracy said, twins have a special bond that is stronger than a "temporary" distance.

Maxton's Mommy February 7, 2009 at 4:39 PM  

No problem Stephanie. :-) I too am having the "short-changed" feelings. This is my first child and all I have ever wanted was to be a mom. I know that now I will always be a mom, but I am so scared of losing him without getting to really experience the many of the joys of motherhood. I am a bit of a control freak and sometimes I think that God has given me a CDH child to remind me that he is in control. I have faith that Maxton will make it, but I tell you... I feel pretty helpless some days.

Darcy February 8, 2009 at 10:59 AM  

Dear Shawn and Stephanie,
Thank you so much for visiting my blog and leaving a comment on Owen's Story. I am glad that it gave you hope in this very scary time. I am so sorry that you are facing this diagnosis with your sweet Kamryn. I can so relate to your post about what your "ideal" dream was for your birth and then realizing that it wasn't going to happen. I remember just wanting to stomp my feet because we were going to have to go two hours away to have Owen and my OB who I love wasn't going to deliver. I wanted Owen's birth to be just like my daughter Grace's. But the blessings that God provided far outweighed those feelings in the end, but you definitely need to let yourself have those feelings too.
Anyway, please feel free to stop by any time or email me with any questions that you have. I will put your sweet babies (and you too) on my prayer list and on my blog.

Darcy February 8, 2009 at 11:01 AM  

Oh and in case you haven't found this blog yet, here is another CDH family that is in Florida and they have a set of twins. Once Olivia was past some of the more critical points they have been able to put the babies in the bed together...

Elizabeth February 8, 2009 at 4:33 PM  


We have a few Moms on the listserv who also have had twins one CDH and the other not.

We all wonder how we will do it - how we will get through - we do. Sometimes not gracefully but we get through.

Thoughts, prayers and Lung Function chants,

Doug Bassett March 10, 2009 at 3:57 PM  


I get it. I understand everything you are feeling. The thing about all those "OMG's" is that they can cause you to be overwhelmed and most of the time they are not as bad as we make them out. You may not get to hold Kamryn but you can touch her and she will definitely know that it is you. I remember the first time we held Olivia it was like time just melted away and all the days prior didn't seem to matter. Kamryn and Brooke are connected on ways that we don't even understand and they will know it when they are in the room together. Olivia and Mason were aware of each other and even with all the tubes we found ways to let them lay beside each other and touch. It was so special to watch them together.
I think that it was even good for the nurses to have Mason there with Olivia. They do such an amazing job of taking care of sick babies but it was like the tension was lifted because there was this beautiful healthy baby with them. Brooke will get to touch just as many people as Kamryn.
I just encourage you to take those "OMG's" as a challenge. I believe you will find out that for everyone of them there is an "I can do that!" And remember that strength and courage are not build during adversity, they are revealed during it. You will find strength you never knew you had. We are praying for you.

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