Wednesday, February 1, 2012

Questions answered

The visit to the NICU was far as those things go.  First I met with the specialist/coordinator for the NICU...she's wonderful!  Then I met with the head of the NICU.  Quick tour around and done.

I can't explain how comfortable they both made me feel.  The specialist gave me her cell phone # in case I have any questions that come up later.  I don't know if she treats all patients this well or if she has a special place in her heart for T18.  She knows 2 other Mommas well that have had T18 daughters there.  Then the doctor took a good amount of time with me and went over everything...he even hugged me when I left.  You know I love a hugger!

The tour was fast...we breezed right by the side where the babies are.  I saw a few of them...they were so tiny and sweet.  Then we checked out the other side while we chatted.  It was a Wow...this is a few weeks away moment.

Adam is not good with doctors, needles for sure, hospitals, blood, etc.  I have a story about a pregnant nurse holding his legs up in the air after he had blood drawn once, but I won't go into that get the idea!  They tell me it's a "real fear"...(I do believe it...I just pretend like I don't).  One of my prayers for him is that he can just be involved in the moment and not worry about that fear.

A few questions we have received answered:
A lot of you email us questions and comments...we love them!  Here are our email addresses in case you don't have them and want to send us an email:

* Do you know Rick Santorum's daughter has T18 and is 3 years old?

Over the weekend Rick Santorum's daughter Bella was hospitalized with pneumonia.  She is 3 and has Trisomy 18.  I've heard that she is doing better!  By the way...I think she's just too precious!

Adam is MAJORLY into the GOP race so we knew about her a long time ago.  Hayden and I have had to do our homework on all the candidates too.

The Santorums' story is a story of hope for us.  We don't know if Bella has a full Trisomy 18 or a partial version called Mosaic.  We know Battley has the full thing.  From what we have read the mosaic version sometimes carries fewer complications with it. 

Let me preface this with (Adam would post later if I didn't) we DO NOT endorse Rick Santorum for president.  It's just a very heart warming video of hope.

* Do you have a date yet?

We don't have a date yet.  It's a call for our doctor to make.  He wants to make sure her lungs are developed enough but doesn't want to risk me going into labor.  He mentioned 38 weeks, which would be the week of March 12-16th.

Side Note: Hayden was born at 42 weeks.  (Guys: 40 weeks is now considered the length of time for a full term pregnancy)  I don't think I'll go in to labor, but that's only a feeling.

* Do you have a photographer?

We do and we are so excited about it!  Her name is Jennifer and she is a volunteer for an organization called Now I Lay Me Down to Sleep.  I heard about this org from a few people and got in touch with her a few weeks ago.  I won't go too deep here, but I believe their mission is wonderful.  We have had a few offers from other friends/photographers, but decided it's best to use someone who has done this before and can be prepared for any situation that may be.

* Are you still going to counseling?

We haven't been back to see our counselor, Stephanie.  That's not to say that we won't in the future.  We have her cell # too!

I have read a few books that have been helpful.  My reading habit is very unhealthy.  If I get in to a good book, I will stay up all night reading until I finish it.  Needless to say I don't read very often since I need sleep.

Very soon after we learned that Battley had T18 a friend sent me an email.  This is the whole email:

Felt lead to share this with you. It has helped friends in similar situations. Much much love to you.

Description on Amazon:

In 2008, Angie Smith and her husband Todd (lead singer of the group Selah) learned through ultrasound that their fourth daughter had conditions making her “incompatible with life.” Advised to terminate the pregnancy, the Smiths chose instead to carry this child and allow room for a miracle. That miracle came the day they met Audrey Caroline and got the chance to love her for the precious two-and-a-half hours she lived on earth.

Upon receiving the original diagnosis, Angie started a blog (Bring the Rain) to keep family and friends informed of their journey. Soon, the site exploded in popularity, connecting with thousands who were either experiencing their own heartbreaking situations or simply curious about how God could carry someone through something so tragic. I Will Carry You tells the powerful story of a parent losing her child, interwoven with the biblical story of Lazarus to help those who mourn to still have hope—to find grace and peace in the sacred dance of grief and joy.

So...the day I received that email was a day I probably didn't venture more than 30ft from the bed.  I forwarded it to Adam with the message "Can you buy me this book?".  I didn't look it up; I just trusted that I was meant to read it.

It came a few days later.  I was totally unprepared for the book.  I flipped it over to read the back cover and there was a huge surprise for me.

**Let me have a quick ADD moment:  I write the way I speak so I would stop the conversation here and tell a backstory...I DO NOT read sad books or watch sad movies.  Once in high school my best friend, Abbey, and I watched a movie...I think it was called My Life, but I could be making that up...I tried to block it out.  We both spent hours after that curled up in bed crying.  I cried for days afterwards too.  It was about a man with cancer preparing for his own death.  Ugh...can barely even think about it.  Anyways, if I hear or have a suspicion that a movie may be sad, I will look it up and verify the sadness...then I won't go.  Drives Adam nuts.  I could name a hundred movies I won't see because I've heard they are sad...Rudy comes to mind first since Hayden really wants me to see it.  Another tidbit about me: this has actually happened more than one time...I can see a movie beginning to end and then see the same movie again and not know it until the end!!**

The back cover has a story about Angie and her husband buying a stuffed bunny right after they heard the news of their daughters sickness...don't think it was T18, but the symptoms are somewhat similar.  I won't spoil the story for anyone who wants to read this book, but it is a very powerful story.

Here's the surprise part...I've read it before!!  Not the whole book, but the story about the bunny.  A few years prior I was reading a blog online...don't know which one...and ran across Angie's blog.
I read the story about the bunny.
Immediatly thought that had to be the worst thing anyone would have to go through.
Then closed it and hoped I would never have to read anything like that again.

WELL...let me just say.  2 boxes of Kleenex and 2 weeks later I finished the book.  It was a hard read!

(If I have spoken to you and told you not to read this book...don' know who you are!)

It was so helpful to see a woman on the other side of this journey though.  She doesn't make light of the fact that this is something that she will carry with her forever, but she is able to find joy in life again and knows her daughter is in Jesus' arms...where she is healthy, safe, and happy.

Whew!  Let's end on a lighter note...

* The other chair?

We bought it after it was recovered.  A before and after:

The rest of this week/weekend holds some of this:

lots of this:
and NONE of this...sorry guys!

Enjoy your week.  I hope that you are all happy, healthy, and safe.

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