Goodbye 2013, hello 2014

As I wrap up 2013 I can’t begin to say how much it has changed me.  It’s a year of ups and downs.  We celebrated two big birthdays this year, Leah turned the big 0-1 and Tanner turned the big 1-0.  Ryan and I celebrated not so big birthdays, but I do suppose another year is always worth celebrating.  All of 2013 was spent in clinics for me, finally putting to use the skills I had learned over the last several years.  I learned that a clinic is nothing like an ICU but yet another area where my passion has grown.  Before this year, I thought clinic was mostly runny noses, strep throat and ear infections. And boy was I wrong, like so many things we tend to stereotype.  

January marked celebrating Leah’s first birthday and we “upgraded” to a minivan-which I love by the way.  February marked Ryan and I going to our 5^th Chicago Auto Show together.  In March we visited Ryan’s brother for the first time in his new home in Peoria, Illinois.  We welcomed a new family member in April, our fun loving, sometimes (or always) ornery golden retriever, Chloe.  In May, we found out that we had a surprise bundle coming but were so excited to continue growing our pretty awesome little family.  June we hit the pool and enjoyed the outdoors.  In July we celebrated another Trimble family reunion in the Dells where we announced our little bundle was coming.  In August, with the help of both of our families, we painted the outside of our house-which will NEVER happen again.  In September our lives completely changed when we learned about Simon’s illness.  October was Tanner’s big birthday, November I went to Texas and finished my master’s degree.  And in December I passed boards.  It’s been a big year here for our family and we’ve learned much about our faith, grieving, loving and losing.  2014 will be a rough year for us as we’ll lose Simon, but even with that, I know God has great things in store for our family and that is what we have to focus on.  So with that, goodbye 2013.  And welcome 2014, a year that will be the hardest of my life but one I will continue to grow through as a mother, wife and Christian. 

A Christmas Poem for Simon

I wanted to share this poem that my mother wrote on Christmas Eve night.  She shared it with us on Christmas.  It's beautiful, thoughtful and catches so many of our emotions not only on that day, but about the situation in general.  Christmas was a great day, but hard as well, knowing it was the only one we would spend with Simon.  I'll update more and post more pictures (I promise!) this week.  We had a great time and a lot of great memories were made.

A Christmas Poem for Simon and Family

To my unborn grandson Simon, still in his mother's womb

Your family's anxious to meet you as we gather in a room

The day of your arrival should be coming oh so soon

Please Lord give us time with baby Simon, before you take him home too soon

We want to share our love with him and give him hugs and kisses too

And cradle him close to our hearts and sing a lullaby or two

Simon, once you get to Heaven you will meet some friends and family members

So say hello to your cousin Brianna, and tell her she is so loved and remembered

To my grandson Simon, still in his mother's womb

Please know our love for you will forever, forever loom!

Love,

Grandma

Let it strengthen you

It's been a busy (nearly) month since I've last updated on Simon and our family.  We've continued to feel at peace with the decision we've made about Simon's care.  In a recent sermon, our pastor talked about peace.  So many people feel like peace is "world peace" or a perfect resolution.  But there's another peace, the kind that we have.  Peace is finding that even when things aren't right, there's a belief that everything will be okay.  While the pastor was talking, I felt like the peace I feel is a "God's got this" sort of feeling.  And he does.  So that is what is making us go along, knowing where Simon will be when he isn't with us and knowing God will comfort us and share in our heartache.

We have also finished our birth plan and much of the planning for Simon. We have a few things left to do, but for the most part, we just get to enjoy every moment of the pregnancy.  I think I'm one of the few (or only) 8 1/2 month pregnant women you'll ever know that doesn't want her pregnancy to end.  But I don't.  I know when it does, I'll miss every kick, roll, punch...and maybe even the heartburn because I know who is causing it.

Also in the last month, I've passed my nurse practitioner boards.  I'm not going to lie-I'm proud of myself.  I was a teen mother and I didn't let statistics define me.  I hope that I am able to serve as a role model for someone else who statistics are against.  It hasn't been easy, but I always knew what my goal was.  I also have to say a huge thank you to my husband who has stepped up the last 3 years so I could achieve my goal.  He's cooked, cleaned, done the laundry, the dishes and made so many other sacrifices so I could work on homework, study or go to clinicals.  And he's listened to me when I needed to cry, vent or just talk about how frustrated I was with school.  He's allowed us to go into more debt and allowed me to not have to work full-time on top of going to school full-time.  He's been my biggest fan and one I couldn't have done this without.  I'm a lucky girl.

There should be pictures coming soon.  Simon has been busy.  He celebrated his first Thanksgiving, went to see Santa last week, has been Christmas shopping, helped decorate the Christmas tree and will soon be getting his first Christmas presents.  I'm very much looking forward to spending Christmas with him and our family, making memories that we will cherish forever.  And I can't even begin to say how thankful I am that we get this time with him, that we get to spend more days and have more memories with him.  

Here's a picture I found shared on Facebook.  I encourage everyone to read it and really think about it.  I know I've had so many people say that they don't know how we can be handling our situation the way we are.  I guess I'm not sure what I really answer but I do have two answers. The first is God and the second is this message.  So read, think about it and enjoy.  Leave the little worries to the side and even the ones that may seem big and enjoy the Christmas season with a little less stress.

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 :)

Week 24-25 Adventures of Simon

It's been a while since the last blog post.  We had two appointments last week.  The first was with Dr. Drake, the perinatologist, the second with Dr. DeJong (or something like that), one of the OB doctors.  Tuesday was when we met with Dr. Drake.  We met with the genetic counselor first, who gave us our microarray results.  The microarray tells us where the deletion is on ring 13, which we found out is at 31.2 (I'll post pictures later, which will help make that number mean something).  What Simon has lost is 114 genes, which are obviously incredibly important in his development.  We set up to have genetic testing done for Ryan and I, which we'll do sometime in the near future.  We also got a copy of what Simon's chromosomes look like, which showed a clear deformity in the second 13th chromosome.  After the genetic counseling, we had an ultrasound.  My parents brought Tanner down for the ultrasound (so he didn't have to go to the before or after meetings).  They all got to see little Simon and we recorded his heartbeat on recorders from Build-a-Bear so each of the kids and Ryan and I can make a bear with Simon's heartbeat.  Our ultrasound showed Simon at 20w5d for his body and 17w4d on his head, with our gestational age at that time being 24w5d.

Dr. Drake brought up the question of how aggressive we want to be with monitoring, since at this point, we can't do anything and it's likely he won't survive the pregnancy.  I knew the conversation was coming, but I was still blind-sided by it.  I told her it's so hard when you're not on the professional side of things.  I can't count how many times I've told a patient's family that their loved one's prognosis was very poor but I've never been on the patient/family side of things.  From a medical standpoint I would advise to let nature take its course, but as a parent, it's so hard to think that's the "right" answer.  How far do you go to give your child a chance at life, but how reserved do you become so they don't hurt?  We're trying to figure out the answer, but I'm not sure we'll have it.  Needless to say, Ryan and I have been having, and will to continue to have, some pretty difficult conversations.  We're also started talking about burial vs. cremation and if we chose a burial, where we bury him.  The things we are having to think about are things I never thought would be on my mind.

I had my OB appointment on Thursday.  This was the first time Ryan hasn't been with me at an appointment since we found out that things weren't going well with the pregnancy.  I insisted he stay at work and I had a work meeting at the hospital that day so it made sense for me to go on my own.  I met with a new doctor in the group.   It started off fine and he acknowledged that this was a difficult pregnancy.  He said that Simon had trisomy 13 and I corrected him and told him he actually had ring 13, to which he replied "oh, I knew it was something with 13".  I forgave his shortcomings...until he showed more.  We started talking about what happens when things get further along in the pregnancy and if he does somehow survive to be able to be born and have a chance of living.  He stated "The baby has been given a fatal diagnosis so we won't do steroids to help his lungs or do a c-section".  Now, being an insensitive jerk is a really good way to make a pregnant lady want to kick you in the face.  That comment was coming from a fella who 3 minutes before wasn't really sure of the diagnosis.  At any rate, I don't think we'll be seeing him again by choice.  I know Simon hasn't been given a good diagnosis, but there were several more tactful ways to put what he was saying into words.

Before I get to Simon's fun adventures, I have more fun news to share.  In 21 days I will be done with my masters degree.  I must say I'm quite excited.  I don't want to wish away time in this pregnancy, however, so this is the first time I will say I hope the next 21 days go very slowly.

We celebrated Tanner's 10th birthday on Friday.  Absolutely crazy...where does the time go?!  

And...Simon's fun adventures.  He's been quite the busy guy lately (in utero as well).  Last weekend we made it out to the Carstensen farm to harvest, which is something every little Carstensen boy needs to do.  He also went to Dairy Queen (it was really Simon who wanted it...who believes me?), had Casey's pizza, went shopping with mommy, played with paper dolls, went to a water park, saw the Mississippi, saw the world's largest strawberry, had room service/breakfast in bed and had a picnic at the lake.  Simon also went hiking at Backbone State Park...which is where his dad first realized he was in love with his mom.  Obviously, it's a pretty sentimental place to us, so it was important that we could share it with Simon and the other kids, since they hadn't been there either.  It was such an amazing weekend that we spent together as a family, one that I think we all needed.  I can't even begin to tell you the number of times I looked at my kids and thought about how lucky I was that God gave them to us to raise.  I fell in love with my children time after time again this weekend, which all you parents know never gets old.  Look at them...how can you not fall in love with these sweet littles?

 25 weeks

 Combining at the farm

 More harvesting fun

 Room service/breakfast in bed (not all of those plates were for me and Simon)

 Visiting the Mississippi River

 World's largest strawberry

 Hiking at Backbone State Park

Making memories

Last Tuesday, we had our appointment with the perinatologist who was nervous that Simon wouldn't survive the pregnancy.  On Friday, we had a meeting with the perinatal palliative care program which consisted of a nurse practitioner, chaplain and child life specialist.  It was a good meeting, I think, for both Ryan and I.  They brought to light the way we are going to cope with everything and that it may be different for each of us.  We talked about stress relief and how we're going to take care of ourselves in this whole process.  We talked about ways to help Tanner with any of this.  We talked about the possibility of Simon not surviving and what we do if he does survive the pregnancy.  It was a long two hours but I feel like both Ryan and I came out having thought about things that neither of us had considered.

One of the most important things we talked about (I think) was making memories.  Since we don't know if Simon is going to ever be here with us, making memories now is what is important.  Sure, we may have him, but if we make the memories now, we won't have to live with the regret that we didn't make the most of the time we had with him.  So, that's what we're going to do.  We're going to live our lives and we're going to do things with our Simon that we would want him to do.  We're going to read him our favorite books, play our favorite music, dance, play and love him.  So we started on Friday and are going to continue.  There's talk of a possible trip sometime soon in the future but we're not sure if I'll be able to go and where/when we'll do it.  So until then, we'll just keep on doing things with Simon and making memories with him and our family.

Here are some of Simon's first adventures, in pictures of course (I might actually have to start looking decent all the time if Simon and I are going to have spur of the moment memories in pictures!)

Simon celebrates Mommy's birthday at Hickory Park

 Simon with a new Corvette

 Simon with a Lamborghini

 Simon with a Viper

 Simon makes chocolate chip cookies

 Simon does a corn maze

And...Simon visits an apple orchard!

 

 So, there it is...the beginnings of the adventures of Simon!  He must be quite excited about all these memories (and the lovely apple cider we got from the orchard) because he's been flipping around like crazy the last day or two. 

Perinatal appointment

I'm mentally and emotionally exhausted today, so this will be brief and to the point.  We had our perinatal appointment today with Dr. Drake.  I've met Dr. Drake several times over the years as we have had mutual patients in the ICU, but never did I think I would be one of her patients.  She recognized me and had no idea that the person whose file she'd been reading was mine.  I do have to say that being in her care makes me feel good as I would never hesitate to send a family member to her.  

Today they did a detailed echocardiogram (heart ultrasound) and looked at baby's anatomy.  We got some "good" and bad news.  Here's what we learned, in order from the most worrisome to least: 

1. Growth retardation:  They have used our first ultrasound date to reset our due date to February 6th, which put the pregnancy at 22w5d today.  The baby is only measuring in at 19w5d so baby has a pretty significant growth restriction, which we knew.  Baby's head is only measuring at 16w6d which is a result of the brain defect.  Dr. Drake seemed to think this was likely the most worrisome problem as many babies with such severe growth retardation don't survive pregnancy.  She told us she was very afraid we would come in some day and not find a heart beat.  We've known this whole time that losing him before birth could be a possibility but we still have to carry on. 

2.  The brain defect (encephalocele) is fairly large and does contain some brain tissue (which isn't a good thing).  There are abnormalities with baby's brain, too, likely due to the encephalocele.  The mortality rate for encephaloceles is 30-45% but our baby has a likely worse prognosis because there are so many defects. 

3.  The heart, from what she could see, looked like it was just the small hole between the ventricles.  She wasn't too concerned about this because 80-90% close before birth and if they do stay open to birth the defect isn't usually symptomatic.  She did caution us that the heart is still small so she couldn't see everything and the possibility exists that there could be more but as of now, it looked like there was the one defect only.

4.  Cleft lip: It seems baby has a cleft lip, we are unable to tell at this point if there is a cleft palate as well because baby is so small.  This is a pretty minor concern as it can be dealt with and isn't life threatening. 

5.  The right hand seems to possibly have some abnormalities in positioning, but again, baby is so small at this point that the images are hard to see.

6.  Dr. Drake told us that if at any point I'm in danger because of the pregnancy and I start to get sick, then we deliver baby to protect me since baby's prognosis is so poor.  She didn't think that I was at danger but also stated that chromosome disorders are sometimes unpredictable.

All other things were talking about referrals to Iowa City, where we go from here and how to proceed the next few months.  If at any point I don't feel baby for 24 hours we have to go in to make sure baby is okay.  Dr. Drake also wanted to make sure we were okay emotionally, as much as we could be, and it meant a lot that she addressed that with us and not just all of the medical jargon. The plan at this point is to do ultrasounds every 2 weeks right now and at the next appointment on 10/22 we'll talk about a referral to Iowa City. 

And the most fun thing about today.  We found out a couple weeks ago that we're having a baby boy.  He is our little Simon Leo, one we're so in love with already, the little boy so many have been praying for.  Tanner is quite excited that he is finally getting his brother.

The roller coaster continues for us at this house.  Hopefully some more answers this week.  In the meantime, Baby C is growing!  Last Friday marked 23 weeks, here is the 23+2 (and first public belly) picture. 

The Waiting Game

The last few days have been rough.  I was off yesterday and had a playdate with a couple of work friends.  The drive there, the drive home and the evening that I spent alone (Ryan worked until 9:30 last night) were torture.  I am having a hard time with the waiting game, not knowing what is going to happen and I drive myself crazy thinking, researching and planning for outcomes that I don't know will happen.  There are several things we are waiting on and I'm afraid none of those answers are going to come soon or provide us any black and white answers.  The first is the further chromosome test.  They started running it last Wednesday and it's a 10-17 day test.  That test is looking at the 13th chromosome to see where the deletion is which can provide some insight to how bad this is.  We're also waiting on the fetal echocardiogram which will tell us if our baby has any further heart defects other than the ventricular septal defect.  If baby has more heart defects, it's not good.  We also have to find out about the encephalocele, the opening at the back of baby's skull.  The encephaloceles have many different outcomes, all the way from stillbirth to normal functioning. In the best case scenario, our baby has a small encephalocele that contains CSF only but it is likely that it will contain brain tissue. 

My heart wants to believe that God is going to create a miracle with our baby.  I've prayed over and over that He will fix our baby.  My brain knows that He has a plan that is already in place and we may not witness a miracle with our baby.  I'm so afraid to hope for a miracle because I think that will just make it so much harder if our baby isn't okay. My mind wanders and I think of our baby grown telling stories of how he/she is "normal" against all medical odds, living proof of the miracles our God can do.  I know this isn't likely, but I am not sure I can give up that hope.  Not yet.

We have several appointments coming up.  On Tuesday, we meet again with the perinatologist.  They'll do the fetal echo to look closer at the heart and they'll look at baby's anatomy again.  I'm hoping they can tell us more about the encephalocele and how good/bad it looks.  We'll also find out how baby is growing (we were 4 weeks behind on growth so I'm hoping baby hasn't fallen any further behind).  I feel baby quite a bit now and Ryan and his sister have been able to feel the baby too.  I'm hoping baby can keep growing and get strong.  My preceptor told me last week that I was looking bigger that day.  Now most pregnant women don't want to hear that but that made my day :)  If I'm getting bigger, baby must be too, right?!  :)  Grow, baby, grow! 

Next Friday we meet with the perinatal palliative care program with Blank Children's Hospital.  I think this will be a good thing for all of us.  They'll help us with whatever the outcome is and help us with the referrals we may have to do.  They'll help us with the kids too, and talk to Tanner to help him cope with all of this.  Leah doesn't have any idea what's going on obviously, but they'll help her, too.

I am sad, I am strong.

Late Wednesday, Dr. West, the perinatologist called.  We talked a little more about baby's chromosome abnormality.  There is further testing that they want to do to determine where the split is at in baby's chromosomes but they had to have our approval before running the tests because they are so expensive (yikes!).  She did think insurance would cover them but still had to get authorization just in case.  The results of this will tell us how severe baby's condition is and will likely determine whether or not we pursue aggressive cares for baby.   We also found out baby's sex from the amnio results...but are keeping it a secret until we have a name and identify for baby :)  Sorry for the teaser :)

On Thursday, we met with our new OB doctor, Dr. Bingaman.  Dr. Bingaman was very nice but being somewhere "foreign" was a little strange and yet another reminder that everything isn't "normal".  It was nice to talk to her and find out what the next steps are.  It sounds like the OB will manage my end of the pregnancy and leave most of the baby care to the perinatologists.  If baby's tests turn out that there is little chance for survival, we will probably stay in DM and not pursue surgeries or aggressive measures.  If there is reasonable chance for survival, however, then we will start looking for surgeons.  When we settle on a place for surgery, we will likely meet their OBs and figure out a plan for delivery if all goes as planned.  Micromanaging what is supposed to be a natural event just seems wrong, but it's what is right for our baby and our situation, I suppose.  We also talked about what we might expect once the pregnancy gets a little further along.  There was talk of three separate testings every week at some point after 28 weeks and growth scans every 3 weeks.  That is all up in the air at this point and will determine how aggressively we watch the baby.

This process is hard for me.  Every bit of it.  I know I seem strong, and I am.  But I'm hurting.  If a parent someday reads this blog to help them, I want them to know that the sadness is okay and you don't always have to be/seem strong.  Some of these posts I write with tears pouring down my face.  I break down and cry, I have bad days, sad moments.  I see baby clothes at the store and my heart aches knowing I shouldn't buy them.  I see pregnant mothers and I feel envy that they are probably carrying a healthy baby and I wish I was.  I see sweet little babies and feel saddened that ours isn't going to look the same, that I won't experience the normal baby routine.  I look in the mirror and realize I'm not growing as much as I should and I feel sad.  I am sad, but I am strong.  I hope parents who go through this know you can be both at once.  I'm not a superwoman, and I know I will never be.  I'm a real person with real feelings that don't always come through a computer. 

With that, I think I shall retire for the night.  Homework for 3 hours before bed just didn't seem like the way to end the night, but updating about our sweet little baby seemed just right.    

Ring Deletion

Dr .West (the perinatologist) called yesterday with results of the amniocentesis.  What we found out is that baby has a defect on chromosome 13.  The previous test looked at chromosome 13 but only looked to see if there were three of them, which there weren't.  Baby has two chromosome 13s (which is normal) but has a defect on one of them called a ring deletion.  From what I understand, a ring deletion is where one of the two chromosomes is severed.  The severity can differ depending on where the cut is but the closer to the end, the better the outcome (everything distal to the cut is basically lost).  Given our baby's difficulties, I think we have one of the middle range to worst of the deletions.  Children with end deletions typically don't show as many problems with development.  She did say that the baby is probably going to have a significant case of mental disability, but I think this is something we expected given the abnormalities we knew the baby had.  Dr. West also told us that we have a week to terminate the pregnancy if we chose, but we have known all along that a termination isn't an option for us. 

There isn't a lot of information regarding ring deletions since it appears they are fairly rare. What I've found is scary and reassuring all at the same time.  We're still not sure that the baby will survive pregnancy but from what we are finding, chances are high that the baby will survive.  Now our heads are whirling with the possibilities of surgeries, hospitalization and everything else the baby is going to have to go through.

Getting all of this news has been a huge spin for me and Ryan.  We're realizing that there are so many uncertainties in our future.  We're going to be stressed in every way...mentally, physically, financially.  Yesterday, we weren't sure if we needed to prepare to lose a child or prepare to care for a special needs child.  Today, we're knowing that although still are both a possibility, our future is probably caring for a special needs child.  I would be lying if I say that didn't terrify us in every way shape and form.  Last month, our biggest anxiety and worry was where I was going to get a job when I was done with school and whether we thought we were going to build or buy a house.  We would hate that our life was on hold.  Even with all of that though, I would thank God, knowing our problems were small.  Today, I know that there are people facing even bigger battles than what we are. 

The last two weeks, I have struggled with the why.  I know there is one, I know God has picked us to care for this baby.  I prayed for the last couple years that I would be a better parent...maybe this is the reason.  I prayed that my husband and I would continue to grow closer to God...maybe this is the reason.  I also know that Ryan and I are some of the calmest people I know.  If something bad happens, we deal with it.  We know that about each other, we hear it from our friends and our co-workers.  I've never doubted Ryan's strength and it's one of the reasons I married him.  I've never doubted my strength.  I was a teen mother and against odds, I've made my life what I always wanted.  I am nearly done with my master's degree, which is something many people, let alone many teen mothers, can't say they've done.  I know I am strong, but only as strong as the ones who surround me.  And with my strong husband at my side, I know we're strong enough to care for this child and for anything else life throws our way...maybe this is the reason.

I hope people don't feel sorry for me or Ryan.  Although we're dealing with this, we have so many other things in our life that we are so blessed to have, things will always outweigh any negative we encounter.  We have each other.  We have amazing families, immediate and extended.  We have great friends, who are always there for us when we need them, who think about us daily.  We have a great church, filled with Christians who are helping us find our way in this sometimes un-Christian world.  We have a house that we can call our own.  We have jobs that we love. We have a God that loves us more than we'll ever be capable of understanding. 

And we have these two...Two little souls who show us that we can and will continue, two little faces who smile at us every day, two little voices who say "love you", four little arms that wrap around us and give us the most amazing hugs, two little hearts that we have to continue to nurture and show that we can handle anything...two little beings that make us carry on, even in the days we don't think we can.

Thank you to all of you who have continued to pray and support us as we walk this road and as we continue to deal with all of the hard days ahead of us.