"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

Saturday, October 8, 2011

Welcome to Holland

Let me preface this entire blog by saying I never thought I would be a blogger. Ever. But as the old cliche goes the only thing constant is change so here goes...forgive me if I am not as eloquent as I would like to be:)

It's been a little over 24 hours since we were surprised with 2 things: 1) It's a GIRL!!!! and 2) she has severe ventriculomegaly. This basically means that for some reason, the fluid made by the ventricles of the brain is not draining properly and is now accumulating inside her brain. This puts pressure on developing brain tissue. If this happens to an adult, they quickly have problems. However as babies skulls are not yet fused, the head can accommodate the swelling and continues to enlarge until the pressure is relieved. This can sometimes be mild, but in our case we were told that as it is very severe this early in her development, the prognosis is "poor".

Working in the ER, I see bad things happen to people almost daily. The world is full of situations we cannot control, and I have spent a lot of time leaning on my faith to stay grounded when it would be very easy to give in to fear. Finding out there is something "wrong" with the child you are carrying is a feeling I can't even begin to describe. When you find out you are pregnant you have hopes, dreams, and plans for your baby....You also have fears, but thankfully for most people those fears are never realized. Unfortunately for us they were, and coping with the significant change in cicumstance and having so many unanswered questions is very hard. Everything has just only begun to sink in. I spent a lot of time on google last night- not always a good thing, but I did find many stories that gave me hope. Yesterday was a day that definitely changed our lives but we believe that this baby is already a miracle, and are hopeful that through this process, we may get to witness a few more.

We have a fetal MRI scheduled for next week, and then an appointment with a pediatric neurologist at the end of the week. We understand that she will need a shunt placed in her brain very shortly after she is born to drain the excess fluid.

Joe and I haven't had much time to process all that this will mean for our family yet, and we will be forced to take things a day at a time since we will only have small pieces of information until she is actually born. BUT, we believe that we serve a God who is faithful, loving, and capable of miracles. We really appreciate your support and prayer for our little girl, and her big sister. Know that we are incredibly grateful for our family, our friends, and our church. We'll keep you posted on her name...

Lastly, I found this last night...gave me a little perspective as I am thikning about all that may be in store for this little girl.


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."


  1. Oh, Sarah! What a journey you are embarking on! Thank you for wanting to share it. It will be therapeutic for you, but also very enlightening for those who want to know how to pray and help, and especially significant for those who have never been to "Holland." If you need a place to process, please call. Love and Prayers, Patricia

  2. That was a beautiful first post. I think you're going to be a good blogger. :) I too appreciate that you're allowing us this opportunity to "walk" this journey with you. You and Joe have been heavy on my heart today...I've been praying, and will pray again as I fall asleep tonight. Looking forward to hearing her name...

  3. Sarah,
    I am so sorry to hear you are going through all this. God does miracles, and prayers are the best medicine. You and that baby girl are in my prayers! Better days ahead my friend.
    Jenn elliott

  4. Very profound post, like others have said, thank you for sharing so that we know exactly how to pray. God Bless, Christy Samms

  5. Sweet Sarah ... I can't begin to know what you and Joe must be feeling. But God IS faithful and does not make junk! There is a purpose and plan behind every life and a reason you were chosen to parent this little girl! Don't ever forget that -- through the ups and downs, uncertainties and fears, God is one step ahead of you laying out the path for your journey -- continue to reach for him and he will guide you. I love your Holland post too! And just like God to put it where you would find it! :) You can count on us to be praying for you, Joe and Addie!