Wednesday, September 28, 2011

Accepting Hard Answers

I heard another song on the way to the hospital this morning, sometimes it amazes me how His hand is working and how He speaks to me through the storm....

"You know me in and out and lovely are your thoughts about me.
How great is mercy. You chose me though I am unworthy.
All that is within me - cries you are holy.
Even when I'm walking through the valley of death.
Even when I'm broken and nothing is left, you lead me on... you lead me on
So I'll pour my tears in the ocean. And I'll leave my pain by the shore.
With your mighty wave you'll sweep them away, till they are no more.

Almost two months ago an educated guess estimated that our little girl would only survive another week. She defied the odds.

If nothing else, this proves that Finley is just as stubborn as her mother! It proves that she is the spunky, strong willed little girl that I have always dreamed of having one day. I can just imagine her in there kicking and punching and complaining about being uncomfortable. My heart smiles every time she nudges me. It's as if she is saying "Hey mom, no worries, I'm all good!"

At the same time, my heart is hurting. These past several weeks have taken an emotional toll on me. I LOOK pregnant. I FEEL pregnant. There is a baby growing inside of me. She is active and she makes it known that she is ALIVE! But with every kick comes a reminder of something that I will never have.

It's hard to wake up and face that reality every day. It's hard to go to a doctor's appointment and be told my baby isn't going to make it, then spend the next four weeks LOOKING and FEELING like a normal pregnant woman; getting the quick, not-so-subtle glances from strangers at the grocery store as I waddle around with my one year old, sitting on the couch with Daniel's hand on my belly feeling her move, waking up every two hours at night having to pee. When I go to the store and pass the little girl's section I STILL have to tell myself that I am not allowed to pick out a dress or a bow for her. Simple things, that most pregnant women take for granted (I know I did with Eli), are amplified beyond my control.

I was given some answers today. Answers that no one wants to hear, but answers that I honestly expected.
The doctors suspect that there is an underlying genetic abnormality that is causing all of her problems. There is not ONE thing wrong with her that we can fix or monitor. The main issue is that she is in heart failure, THIS is what will ultimately lead to her demise. However, there are also several small things that are abnormal; her heart is too big, her chest and abdomen are filled with fluid, she has had gradual small changes in her brain.

She can't be "fixed". But I don't think she is broken. I think that her life, even if she doesn't take a breath in this world, will be full. Full of love and purpose.

Next week I have two more appointments; one with my regular OB and one with a new MFM specialist. My OB did a bit of fishing around and found a highly recommended specialist (NOT the same one we have seen in the past!) at a different hospital to perform another level 2 ultrasound for us. We will see him next week and at this point we are leaning towards consenting to the amniocentesis.
The amniocentesis will give us a clearer picture of what is going on genetically. It will also point Daniel and I in the right direction as far as having genetic testing done on ourselves and Eli.

As always, we appreciate the love and prayers from our family, friends, acquaintances, and strangers! Finley has shown us what GOODNESS can come from this world.

Dear Doctor.....

(I have an OB appointment this morning and I printed this out to hand to my doctor as long as there is still a heart beat)

I typed this up because I didn't want to forget any of the questions that I have for you. Also, I don't know if I would be able to actually say these things or ask these questions out loud while still making sense. This is a very difficult thing for me to discuss…..

I was told 2 months ago that my baby wasn't going to make it and later was given about a week for her to continue having a heartbeat. It's been 8 weeks and she is still alive and moving. Do we still believe that this will be the outcome even though she has lasted this long?

I can't just stop fighting for my daughter, I need to know all of my options to help her. I can't just be expected to sit back and let her die without even trying to find a way to save her.

Now that I am nearing "viability" can we do amnio infusions to help her survive and grow?

Now that I am farther along, is there a chance she will survive? Is her lasting this long an indication that it's not as bad as we originally thought? If it would help could we induce early and take her out while there is time to help her? Would it be better for HER to have her inside me or try to take her out and help her?
If we induce or if she makes it to term what will happen? Could she have surgery to correct her heart? Could she have a heart transplant? Could we drain the fluid around her heart?

Why aren't we fighting harder for her or considering all possibilities? Why am I just being told she won't make it??

I was told we would have to consider life support. Why would we need to consider that? What are the facts that point to her not being able to survive after birth?

Why don't we THINK she will survive?? Just the heart failure? The low fluid? I'm trying to understand this better.

I keep getting told I need to have an amniocentesis to get definite answers, but I have been told on more than one occasion that my baby will not survive. Why is THIS the definite answer I keep being given?? If this is my answer then why would I even have the amniocentesis?
I chose not to do the amniocentesis because I was told she would not make it. I decided that I would opt for testing after her birth. It has been 2 months and she is still here.

If she does pass while I am still pregnant, what steps do I take? What happens if I come in for a heartbeat check and it isn't there? What will the steps be? Are we going to wait to see if I go to labor on my own? How long would we wait before inducing?

I just need some answers so that I can be at peace with all of the decisions I need to make.
I can't just be told that she will not make it and accept that as a fact without some answers.
This is my daughter, she is a person, I can't just let her die.

Monday, September 19, 2011

Eli's Fall

This weekend we were in Tupelo, Mississippi for Daniel's Ultimate tourney (sectionals). We stayed at a church in the area and all of the married couples stayed in a carpeted area upstairs. On Saturday night we went out to eat and then rented a movie. When we got back to the church building we were all getting ready to watch the movie and Daniel didn't realize that I left the room to put on my sweat pants. I didn't realize he didn't know I had left and somehow the door to the staircase was left ajar. Daniel turned his back on Eli for mere seconds to shut the sliding door to the roof when it happened.

I was in the other room changing and I heard a sound as if someone was running down the stairs. I was thinking to myself, "Who is that???" when the screaming started. I will never forget that moment when I realized it was Eli.

Daniel and I both ran to the stairs after him. The first thing I saw was Eli laying at the bottom of the stairs on the tile. He was propped up on his arms, looking around, and screaming. That was a GOOD sign! I held him in my arms to try to calm him and had Daniel look at him while I held him. Daniel told me he was bleeding from his mouth and my heart stopped for a second. I immediately thought the worse, but it turned out to be a cut on his tongue! Man, do tongues bleed!!!

We took him upstairs and continued to sooth him. I checked his pupils, all of his limbs, his neck, his head. We kind of forced him to walk, and talk, and play with us. We made him laugh and asked him to wave. All of this just to see if there was anything physically wrong with him. He seemed fine after about an hour of keeping him awake save for a big bruise on his forehead.

Leave it to my little stinker to fall down a flight of 22 old, wooden stairs and be perfectly fine!!

This was Eli's FIRST big accident!!

(so THIS is why in all of his birthday pictures he has a huge purple/yellow bruise on his head!!)

Friday, September 16, 2011

Eli, you're ONE!

I am officially the mother of a 1 year old!!

Happy Birthday Eli!
You are officially one year old and so grown up! I can't believe that one year ago you were snuggling and sleeping on my chest. Now you won't sit still!

You are such a joy and blessing to our lives; the world is definitely a better place with you in it! Your ability to make people smile, even complete strangers, always amazes me and makes me proud to be your mom. You have a light inside of you that is clearly visible. You may not know it, but you have been my rock in this incredibly difficult time of my life. Just looking at you reminds me of how great God is.

Let's see... what have you been up to?
You are now waving "hi" and "goodbye" to everyone! You try to say "hi", but it sounds like "Ahhhhheeeee"! You are a very social little boy. You pretend you are shy at first, but you will walk up to anyone and greet them with a grin! You absolutely love other little kids, especially older boys. You like to watch what they are doing and follow them around. One day you'll be just as big as them, don't you worry!

You also LOVE music and dancing! You will dance to anything and sometimes you make up your own music... sometimes you even dance when there is NO music! It took us a while to figure out what you were doing! You kind of sway back and forth and bob up and down. I keep telling your daddy not to sing to you (I don't want you to be tone deaf like him!)! When we are alone during the day I sing to you and it makes you smile and laugh.

You are pointing out everything these days! I will say "Eli where is the tree" and you point to it... then you wave at it! You love looking out the window at the tree right off of our balcony, especially when the wind is blowing. You point to the things you want too; what you want to eat, what toy you want, people that you recognize. You are such a smart boy!

Your favorite food is mashed potatoes, especially when I put cheese in them! You could eat mashed potatoes everyday and be perfectly content. You've also discovered fries, you LOVE fries! Last night at your birthday dinner it's all you wanted to eat!

You are becoming more and more independent! You want to make choices about what you eat, feeding yourself, where you want to walk, etc. You are starting to throw little fits now when you don't get your way. They don't last too long, so it's okay!

You still love to climb! You have been trying to get onto the couch, but it's a little bit too high! If I am sitting on the couch you have learned to grab onto my pants to help pull yourself up!

You act really funny when you get excited or hyper! You clench your teeth, clamp your hands into fists (or grab my face), and shake with excitement! It is so funny! I got a picture of it last night!

You are such a sweet and loving boy! You love to snuggle with Daddy and Mommy. You also love to give us hugs and kisses! When we go to Nana and Grandpa's house your Nana likes to say "Hugs for Nana" while she crouches down... you run over to her and wrap your arms around her!

I can't believe that one year ago I met you for the first time! Now, I can't imagine this world without you in it!
This world can be a scary and sad place, but I am confident that you will walk through life with a smile on your face and joy in your heart! You are a very special person, never forget that!

I love you so much baby boy!
Love you always,

Thursday, September 8, 2011

Hold My Heart

I went to the hospital today. I hadn't felt Fin move in a couple of days, so I was starting to get worried. On the way to the hospital I was pleading with God to make things better, for some kind of miracle. I heard this song on the way and the lyrics could not ring any truer for me at this time in my life:

I'm on my knees, Father will You turn to me?

One tear in the driving rain,
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breaking heart?
One life, that's all I am
Right now I can barely stand
If You're everything You say You are
Would You come close and hold my heart

I've been so afraid, afraid to close my eyes
So much can slip away before I say goodbye.
But if there's no other way, I'm done asking why.

So many questions without answers, Your promises remain
I can't see but I'll take my chances to hear You call my name
To hear You call my name

One life, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart.

Finley's heart rate was only 68 today. She is slowly letting go. The OB thinks that she has about a week or so left.

She is showing signs that she isn't developing properly anymore. I am just over 24 weeks pregnant... her head is measuring 22 weeks, her legs less than that. Her chest is measuring 26 weeks from all of the excess fluid. The doctors think it was just a fluke (nothing genetic) in development. There was nothing I did wrong. I have to keep telling myself that though....

I know that things could be worse. People have gone through worse. At least we know and we can somewhat prepare for her passing, but no one should ever have to lose a child. For us, she isn't a child here with us on earth. She hasn't been born yet, but she is still a precious soul. She was given to us and we will always be her parents.

I think what hurts the most is that we are losing a future with her. I will never know what her laugh sounds like or if she is as stubborn as me. I will never get to see her and Eli play together or take her shopping, just us girls. It hurts that there will always be a piece missing from our family. Always.

I know people read my thoughts and feelings here, they tell me I am strong - but it is far from the truth. HE is strong and HE is carrying me. Just because He didn't give me what I wanted doesn't mean there isn't a plan and that He is not a loving God. He is holding my heart and I know he hears me.

"For you created my inmost being; you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book before one of them came to be."

Psalm 139:13-16

Wednesday, September 7, 2011

Dancing in the Rain

In the aftershock of devastating news people cope in so many different ways.

For me, the easy way out would be to hide my grief inside; to avoid the "poor you" looks and the possible "I'm so sorry" confrontations. It's always been hard for me to confront emotion and talk about it. I prefer to distract myself and then cry when no one is looking. Doesn't sound like THE most healthy coping mechanism, right?

I can easily say that this is the most difficult thing that I have ever been through. Yet at the same time, I can see God's hand working so clearly. He has been preparing me for this time in my life.

I have a husband who loves to "make me" talk, even when I'm reluctant.
I have a very unplanned little boy with the sweetest disposition who can make me smile no matter what.
I have friends in my life with gentle spirits and discerning hearts.
I have a family with such strong, unwavering faith.
I have a trust in God that is stronger than ever before.
I fully believe that this time in my life has a purpose. Finley has a purpose.

I know that people are waiting for good news from me. They are waiting for a good update. Consider this: God is GOOD! He is at work and I am getting though this one day at a time. I am surviving. I am not hiding away. I am confronting the pain. I have hope.

This past weekend I took a trip out to Atlanta with Eli to meet up with two of my close friends and their one year olds. I am so thankful that God put such amazing women in my life to share in my journey. The weekend was filled with fun, laughter, tears, LOTS of talking and very LITTLE sleep! It was exactly what I needed.
I don't think they fully know how much I appreciated the "normalness" of the weekend. They didn't give me the "poor you" look and they didn't tip toe around me.
If it were up to me we wouldn't have talked about Finley at all and they knew that; but they also knew that I NEEDED to talk. They didn't force anything. Each time we ended up talking about her it was without me even realizing it til it was too late.

To my friends, I thank you from the bottom of my heart for your support and love.
To my family, your presence and your prayers and your understanding of ME are helping more than you know.
To everyone else who may come across this, this is a GOOD update.

As cliché as this might sound, the metaphor rings true to this moment.
There is a storm coming, but for now I am just trying to dance in the rain.

Please continue to pray.

Here are some pictures from the weekend: