Our decision

Ryan and I have made a big decision in the past week.  In learning everything we have over the last several months about how sick Simon is, we don’t think that medicine can help him.  We talked to our perinatologist who reaffirmed that placing our faith in God with this situation is what is best.  As a nurse, it’s hard to walk away from medicine, but I know this is the right decision for our little Simon.  Surgeries are too risky and if he did survive, he wouldn’t likely have any quality of life.  With the chromosome disorder plus the encephalocele there are scary possibilities and we’d have to put him through so much to get him there.  We’ve started planning not for the maybe of possibilities, but for our reality.  We met with our pastor this week about a dedication and a funeral.  We met with palliative care who is helping us with so many things along the way including a birth plan so things can go just how we want at the hospital.  I’ve contacted an organization called Now I Lay Me Down to Sleep.  It’s a volunteer organization of photographers who will come to the hospital and take pictures of Simon and our family when he is born.  We’ll meet with another one of our pastors next week who is a funeral director so we can make plans for a funeral and remembering Simon.  

Last weekend Ryan, the kids and I visited my grandparents.  We talked to them about Simon and about what we had decided.  In hugging me when we left, my grandpa cried said he felt so sorry for us.  I told him not to feel sorry for us.  We are so unbelievably blessed to have what we have in our lives.  We wish this blessing of Simon was going differently, we wish we were going to take him home as a little bundle of blue joy but we’re not.  God gave us two of His children to care for here on earth and He is going to care for Simon until we get to heaven.  And as hard as it is to believe, He loves Simon even more than we do.  That is our saving grace and without that, I don’t know how we would make it through any of this.  So please, don’t feel sorry for us.  We get the gift of children and we know we’ll have the future gift of more children.  And as much as we’ll grieve for our Simon, he’s already taught us so much about ourselves, each other and our faith.  

I hope that you all will just pray for us.  Pray that we get some time with our Simon and that our marriage and our family is strengthened through this.  Pray that we have a safe delivery.  Pray for us as we go through this grief process, one that will have days that are harder than others.  Pray that we can make more memories with Simon while we are given the gift of carrying him.  And pray for Simon, that he touches many hearts and maybe, just maybe his story will help find solace and peace for others who will endure the same heartache.  

I likely won’t finish my days of being thankful.  I hope I’ve made it very clear how thankful I am for so many blessings in my life.  My mother is one of those, she is so unbelievably supportive in everything I do and I’m so thankful to have her as a best friend now that I’ve grown.  And our children.  They’re amazing, my reason for going on, the best things that have ever happened to me.  My heart would never be full without them as I would never know the gift of being a mother. 

Simon loves Italian food

I'm really awful at this, but I'm sure most people in my life know I'm not exactly on top of some things.  Simon is doing well.  He had a particularly active weekend in utero.  I was worried last week because his movements seemed to be slowing down but starting Friday he's been quite a busy fella. 

Nothing much else is going on here.  I've started studying for boards.  I finished my clinical hours.  And I take my final on Tuesday.  So yeah...not much.

Here's my weekly catch up.

12: Italian food.  I LOVE Italian food, even more so when I'm pregnant.  Simon loves Italian food. 

13: My grandparents (11/13 is my grandmother's 91st birthday!).  They're actually my sisters' grandparents but they've always let me call them grandma and grandpa.  I still have yet to find two people who are so in love with each other.  They celebrated 70 years of marriage, years that I'm sure have been filled with many emotions both good and bad, but you sure wouldn't know it.  I hope my marriage is as blessed as theirs is.  Anyways, they're amazing people and I'm so glad to have them in my and my children's lives.  An added bonus?  They're unbelievably cute (this is a photo from their joint 90th birthday last year).

14: Preceptors.  I've been so unbelievably lucky to learn from some amazing nurse practitioners this year.  Each of them has taught me so much and shown me the kind of practitioner I want to be.  So thank you Heidi, Jamie, Patty and Laura!  Their staff at each place has been amazing, too, and a huge support especially this last semester, some from near and some from afar. 

15: Friends.  I'm lucky.  I have friends that I don't get to see very often because of my crazy schedule with school (and the occasional work) and kids.  They stick with me though and when I see them, it's like it's been a day or two since we talked last, even though it's been weeks or months.

16: My in-laws.  I'm pretty stinking lucky to have great in-laws.  Most people dread their in-laws coming to stay or *gasp* going to stay at their house.  I've never felt less than at home with them, though.  I really couldn't have picked better ones. 

Everything is bigger in Texas!

Simon and I are back in Iowa (and have been since Friday).  It was a fantastic trip, filled with a lot of great learning, fun times with some school mates and a little emotion.  It's no secret that we're trying to make the most of memories with Simon now.  I figured that Simon and I taking a picture with Margaret Fitzgerald might be something I would like for my office someday.  Most of you are probably saying "Margaret who?"  For a lack of a better way to describe her, Margaret Fitzgerald is arguably the most successful nurse practitioner, the NP of all NPs I suppose.  She's built a huge company focused on the continued learning of nurse practitioners.  I don't usually get "star struck" but I thought a photo-op of Simon with her might be kind of fun.  So, I asked her to take a picture with me.  I felt a little like a screaming teenage girl at a Justin Beiber concert by asking so I felt the need to justify myself with a little of Simon's story...so I did...and I cried a little.  If you know me, you know I don't cry.  I don't wear my heart on my sleeve.  My husband has rarely seen me cry.  I felt like a complete goof, but I do suppose I can at least use pregnancy hormones in my defense.  Here's Simon and Margaret, with his blubbering mother as well.

And to play catch-up, as I knew I would, here are my days of being thankful.

6: I'm thankful for a 20" pizza (everything is bigger in Texas, right?).  Instead of going out this night, the girls and I ordered a pizza in.  We sat around said mammoth pizza and shared some pretty great conversation in the privacy of room 712.  There were some laughs, some near cries, some gasps...a little of everything that likely wouldn't have been talked about had we been in the confines of a booth at a local restaurant.  Part of it was a conversation I'll cherish for a very long time, near strangers sharing in mutual anguish but in the beauty of a memory. 

7: I'm thankful for the promise of new life.  I found out in the last week that someone I consider a dear friend is expecting a baby.  As soon as I found out, I sent a little prayer to God to protect the sweet, new little babe growing inside of her, a sweet little babe that is going to change her and her husband's lives forever. 

8: I'm thankful for being homesick.  After 3 days of being away, I was ready to come home.  Being homesick clearly means I have a home to be sick for, which some people don't have.

9: I'm thankful for Sharon, our former nanny.  She's an excellent gal, and more than just a sitter to us.  She's grown over the last 9+ years to become part of our family, not just a former babysitter.

10: I'm thankful for Hickory Park.  The sweet deliciousness of Hickory Park, especially when it's delivered by someone else.  Peggy and Joel (Ryan's parents) delivered us HP Sunday night, along with Tanner.  A pretty good package I must say.  Did I also mention that's where Ryan and I had our first date?  I'm pretty sure that makes it taste even better. 

11: I'm thankful for my freedom, those who have served to protect it, those who have died to protect it and the families who have endured much pain to let their loved ones serve.  I don't think America can ever thank our service men and women enough for what they do for our country.

Simon is leaving on a jet plane!

We got clearance yesterday that all looked well with Simon so I can travel today.  The blood flow looked good and Simon was still growing.  His head is measuring at 18w4d, femur at 21w4d and abdomen at 22w1d, all of which are small (we were 26w4d) but he's still growing which is the important thing.  So, we're ready to go today.  The flight leaves at 3 this afternoon so I'm just tidying things up and going to enjoy some snuggles with my girl before I leave.  I've only ever been away from her one night and that was when I was with Ryan in Des Moines celebrating our anniversary, so 3 days and several states away might be a little rough for this mama.  I'm sure we'll all survive (including dad).

And to play catch up (which I'll do when I get back from Texas).  Here's day 4 and 5.

Day 4: I'm thankful for heartburn medications.  Today was the first day in quite a while I didn't have heartburn.  Tums weren't cutting it anymore so Pepcid and Prilosec have been brought on board.  I'm so glad for that advancement in medicine.

Day 5: I'm thankful for this man.  

Growing up, I always dreamed of someone I would love, someone who loved me and a father to raise my children with.  I got all of that and so much more.  As I leave for these 3 days, I know I don't have to worry about our kids or him.  He'll take fantastic care of the kids.  The house may be a little messier when I return, but that I can live with.  He's also been a huge support these last 3 years as I've worked on my master's degree.  There's no way I would have been able to do it without him.  He's just wonderful and more than I ever could have hoped or dreamed for in a life partner.  I hope our children find the same happiness some day.

Baby appointment and days 2-3

We have a Simon appointment tomorrow with Dr. Drake.  We're going to have an ultrasound and doppler flow study.  The ultrasound is going to be sure Simon is still growing and the doppler flow study is going to measure the blood flow from me to Simon.  Both of these will slow down if/when my body starts to "reject" the pregnancy.  We're praying everything is okay because I am supposed to fly to Dallas for a few days on Tuesday.  I'll be down there with a good school friend taking a board review course.  If everything looks good at the appointment on Monday, then I'll go and if not, then I'll stay home.  I'm really hoping all is well because I think the 3 day escape will be good for me, even if it is sitting in a review course.  I'll try to update tomorrow with results of the scans.

I'm already behind on day 2...I'm doing really well, huh?

Day 2: I'm thankful for my dad, who is actually my step-dad.  I met him on my 7th birthday and my life completely changed.  He didn't have to be my dad, but he stepped up to the plate and showed me what it's like to have a father.  He's been through a lot with me and put up with stuff he didn't have to and even walked me down the aisle on my wedding day.  He's one of my biggest cheerleaders in anything I do.  He's also brought along a great family that accepts Tanner and I as their own.

 See the love on his face?  Yeah, I'm a pretty lucky girl.

Day 3: I'm so very thankful Ryan and I have the church we do.  We went to a couple churches after we got married and finally found the right fit at Harvest.  The outpouring of love from the church family has been touching.  We were there today and several people asked how we were doing.  People we have never met have reached out to us in our recent rough times.  Also, today, I was nearly moved to tears.  Have you ever heard a church full of Jesus followers singing "Amazing Grace" together?  It's a pretty amazing thing.

I finished all coursework for my masters.  The only thing standing between me and my MSN is 23 hours of clinical and a final exam which I can get a 0 on and still pass.

That "Thankful" Bandwagon

Now I usually don't get into all of these Facebook trends and what not, but this year, I thought it might be appropriate as we go through a hard time to focus on the good things Ryan and I have in our life.  We'll see if I actually make it every day (it might have to be an every few days thing for me, I tend to forget things easily).  So here it is...I'm jumping on the "thankful" bandwagon, which might not be such a bad one to be on.  

Day 1: I'm thankful for a God who loves me and my family and knows everything we're going through right now.  During the last 7 weeks or so since we've found out that Simon wasn't healthy, I have grieved and prayed for those who go through such trials without knowing how much our God loves them and how much he really feels with us.  I heard a song the other day from someone who "liked" it on Facebook (thanks, Tina!).  The song is "Praise You in the Storm" by Casting Crows.  The whole song seemed like it was written for me in that moment, just like many of the messages I seem to have from God.  So, I'll close with the chorus that really moved me and continues to go through my head when I feel sadness about our situation.  

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

Feel free, any of you, to join along with me and write what you're thankful for in the comments :)