Bailey's Journey

Happy Easter!

2011-04-25T20:26:00.000-07:00

Thinking of you lots - as always. I love you sweet Bailey. We missed you.

Merry Christmas

2010-12-27T21:40:00.000-08:00

Merry Christmas, my sweet little Bai! I made sure you got your Christmas present before Christmas morning. It was late late at night on Christmas Eve and pouring rain but I got it there. I will visit again this week. I love you so much. I missed having you with us on Christmas morning but I thought of you often. You know how much we all love you.
Celebrate with all of your angel friends in Heaven and watch over all of us that love you.
That's the best we can do - until we are together again.
Love you!

Football and Fall

2010-09-24T14:11:00.000-07:00

Hi my beautiful little Angel.
It's Fall again and I sure have a hard time with my missing you. Maybe it's because it's Football season and I remember how much I had looked forward to dressing you up in your team gear and having you as a cheerleading buddy at your big Brothers games. Or maybe I just get reminded of how supportive Parkers football team was when you came and then left us so soon. I will never erase the picture from my mind of those awesome 8 year old boys standing around you at your viewing while Parker proudly showed them his little Sister. What an awesome team we had to help us through those weeks. Or maybe it's simply because your birthday is approaching.
Whatever the reason, I miss you so incredibly much, Bai.
There will be no birthday party, no pretty dresses and bows or cute little dolls to unwrap. There will be no princesses or fairy costumes at Halloween time.
What I do have, though, are dreams of what might have been and knowing that one day, it will be.
I love you, Bai. I think of you every day.
Keep cheering with me from Heaven.
Daddy, Mommy, and your brothers never forget you!
Mommy

A Few Questions

2010-08-10T10:49:00.000-07:00

Another song that I love!
Everyone must face challenges .. we all just get different ones. No matter what we are given to face, we need to remember there are others out there going through things just as tough.
Our trials are chosen for us by someone who knows we can make it through them and we can't give up.

JUST A FEW QUESTIONS
(Ray Scott/Phillip Moore/Adam Wheeler, sung by Clay Walker)

How in this world can we put a man on the moon,
And still have a need for a place like St Jude's?
And why is one man born,
In a place where all they know is war?
An' a guy like me,
Has always been free.

An' how can two people who built a lovin' home,
Try for years an' never have a child of their own?
When somewhere out there tonight,
There's a baby no-one's holdin' tight:
In need of love.
To me, that don't add up.

But I wasn't there the day you filled up the oceans.
I didn't get to see you hang the stars in the sky.
So I don't mean to second guess you,
Or criticize what I don't understand.
These are just a few questions I have.

An' why did my cousin have to die in that crash?
A good kid, only seventeen, I still wonder 'bout that.
It seems unfair to me,
Some get the chance to chase their dreams,
An' some don't.
But what do I know?

I wasn't there the day you filled up the oceans.
I didn't get to see you hang the stars in the sky.
So I don't mean to second guess you,
Or criticize what I don't understand.
These are just a few questions I have.

Why do I feel like you hear these prayers of mine.
When so many oughta be ahead of me in line?
When you look down on me,
Can you see the good through all the bad?
These just a few questions I have.

Glory Baby

2010-07-21T15:19:00.000-07:00

GLORY BABY
by Christy and Nathan Nockels

Glory baby, you slipped away
As fast as we could say baby, baby
You were growing, what happened dear
You disappeared on us baby, baby

Heaven will hold you before we do
Heaven will keep you safe
Until we're home with you
Until we're home with you

We miss you everday, miss you in every way
But we know there's a day when we will hold you, we will hold you
And you'll kiss our tears away, when we're home to stay
We can't wait for the day when we will see you, we will see you
But baby let sweet Jesus hold you, until Mom and Dad can hold you
You'll just have heaven before we do
You'll just have heaven before we do
Before we do

Sweet little baby, it's hard to understand it
'Cause we are hurting, we are hurting
But there is healing, and we know we're stronger people
Through the growing, and in knowing

All things work together for our good
And God works his purposes
Just like he said he would
Just like he said he would

We miss you everyday, miss you in every way
But we know there's a day when we will hold you, we will hold you
And you'll kiss our tears away, when we're home to stay
We can't wait for the day when we will see you, we will see you
But baby let sweet Jesus hold you, until Mom and Dad can hold you
You'll just have heaven before we do
You'll just have heavne before we do

I can't imagine heaven's lullabies
And what they must sound like
But I will rest in knowing
Heaven is your home
And it's all you'll ever know
All you'll ever know

We miss you everyday, miss you in every way
But we know there's a day when we will hold you, we will hold you
And you'll kiss our tears away, when we're home to stay
We can't wait for the day when we will see you, we will see you
But baby let sweet Jesus hold you, until Mom and Dad can hold you
You'll just have heaven before we do
You'll just have heaven before we do
Yeah, you'll just have heaven before we do
Before we do

We love you, Bailey! Watch over your Brothers until we meet again.

"Butterfly Fly Away"

2010-04-21T16:31:00.000-07:00

"BUTTERFLY FLY AWAY"
Songwriters: Glen Ballard and Alan Silvestri
Sung by Miley Cyrus and Billy Ray Cyrus

You tucked me in, turned out the light
Kept me safe and sound at night
Little girls depend on things like that

Brushed my teeth and combed my hair
Had to drive me everywhere
You were always there when I looked back

You had to do it all alone
Make a living, make a home
Must have been as hard as it could be

And when I couldn't sleep at night
Scared things wouldn't turn out right
You would hold my hand and sing to me

Caterpillar in the tree
How you wonder who you'll be
Can't go far but you can always dream

Wish you may and wish you might
Don't you worry, hold on tight
I promise you there will come a day
Butterfly fly away

Butterfly fly away, butterfly fly away
Flap your wings now you can't stay
Take those dreams and make them all come true

Butterfly fly away, butterfly fly away
We've been waiting for this dy
All along and knowing just what to do
Butterfly, butterfly, butterfly, butterfly fly away

Butterfly fly away
Butterfly fly away

I love you my sweet little girl. Although you weren't here long enough for us to see exactly who you'd be we know we will still have a chance to see you make your dreams come true. We just had to let you spread your wings and fly away for now .. until we meet again. I love you!

Happy Easter!

2010-04-06T15:45:00.000-07:00

As Easter came, I was so very sad. I was sad about what I was missing - buying you a pretty little Easter dress and doing your hair cute with little bows. As your brothers painted Easter eggs (and, yes, of course they remembered to make a few with your name on them) I thought about how you would be old enough to make a mess with them this year. As they searched for the eggs hidden by that tricky Easter Bunny, again, I thought of you. Whether you would be using a walker or braces to walk or sitting in your wheelchair, your Brothers would have made sure you had fun with them looking everywhere to find those painted eggs. I was sad that you were missing out being with us - having fun with your very special Brothers. But then I realized, you are even luckier - you were spending the day with Jesus, another very special Brother. And it is because of him that we will be able to be with you again some day - and enjoy all of the special moments that we feel we have "missed" here on Earth. Isn't that what Easter is all about?
I love you and am missing you so very much, my little Bai.
Hugs and Kisses from Mommy, Daddy, and your Brothers! Happy Easter!

Temporary Home

2010-03-02T21:30:00.000-08:00

Happy Birthday, baby girl!
No, it isn't some specific milestone but today is the 2nd of the Month which means you would have been 17 months old - almost 1 1/2 years old. I can't believe how time flies! I think of you always but especially on your birthday. I wonder what milestones we would be celebrating. But I know that one day we will be together to celebrate everything together. This song reminds me of you every time I hear it. Only part of it really pertains to you but I just have to keep remembering that this Earth was just your "Temporary Home" and one day Me, your Daddy, and your Brothers will all be together with you again - in our Heavenly Home.
Love you, sweet Bailey!

TEMPORARY HOME
(sung by Carrie Underwood)

Little boy, 6 years old
A little too used to bein' alone
Another new mom and dad, another school
Another house that'll never be home
When people ask him how he likes this place
He looks up and says with a smile upon his face
"This is my temporary home
It's not where I belong
Windows and rooms that I'm passin' through
This is just a stop, on the way to where I'm going
I'm not afraid because I know this is my Temporary Home."

Young mom on her own
She needs a little help, got nowhere to go
She's lookin' for a job, lookin' for a way out
Because a half-way house will never be a home
At night she whispers to her baby girl
Someday we'll find a place here in this world
"This is our temporary home
It's not where we belong
Windows and rooms that we're passin' through
This is just a stop, on the way to where we're going
I'm not afraid because I know this is our Temporary Home."

Old man, hospital bed
The room is filled with people he loves
And he whispers don't cry for me I'll see you all someday
He looks up and says "I can see God's face."
"This is my temporary home
It's not where I belong
Windows and rooms that I'm passin' through
This was just a stop, on the way to where I'm going
I'm not afraid because I know this was my Temporary Home."

This is our Temporary Home.

It's just "stuff"

2010-02-07T23:59:00.000-08:00

I have to say that this is one post that it is probably good I waited a day or so before posting.
As many of you know, it has always been important to me that something .. anything .. is on Bailey's grave at all times. I don't like to think of it bare. I used to go AT LEAST once a week .. then cut it down to weekly .. and then every other week. However, since Christmas, I have had a very hard time going at all. It has been a rough few months for me "Bailey-wise" and I just haven't felt like I wanted to deal with it. Well, I finally decided it was time for me to go and take her Christmas wreath down, check on her, and leave her a little Valentine.
I stopped by the other day and upon pulling up was not suprised that the wreath and its hanger were missing. I figured it was my own fault for waiting so long and that they had probably just cleared the grave. However, as I walked up and stood there looking at her headstone I realized that there were more things missing. Her little snowman family that I left all winter last year and then took home for summer and returned again this winter was gone. Her basket with the bunny that my Sister had taken for her (again, been there since last Easter) was gone. I was so upset. Again, I thought that maybe they had just cleared the grave. Yet they had left the other pot that my Sister had made? I doubt that. Then the warning came back to me from when we were picking her headstone. We were warned not to pick the "copper" or more expensive built-in vases because people steal them and turn them in at the recylcing place for money. I had heard stories of people stealing flowers but really didn't think it would happen. However, I believe that is what happened this time. I believe that someone took the few little things I had left there for my Bailey. I was angry. Why would someone do that? What is the point? Did they need it for their loved ones grave? Honestly, I hope so. That would make me feel much better than to think that they were just thrown away.
Like I said .. I was very angry so it is probably good that it , took me a day or two to write this post. Why? Because I have had time to realize that ... "it's just stuff". Yes, to me it represents my love for my sweet daughter. Having something there at all times makes me feel that she is loved, that someone remembers her, that she is not forgotten. But does the "stuff" really make that love more real? No, I am sure that she knows how very loved she is no matter what. She was loved by so many people even before her birth. She touched peoples lives in ways that are unimaginable for a baby who lived just under 3 days - people that never even met her - people that never even met us. Her story has touched many. She will not be forgotten.
I love you sweet, Bailey.
(P.S. I still don't want you to take her "stuff"! HA HA - OK, I'm still a protective Mommy.)

Christmas

2009-12-21T00:06:00.000-08:00

Hello my sweet little girl -
I went to visit you last week and take you your Christmas gift. It seems so unfair that I am running around everywhere spending money and finding the perfect toys, games, books, clothes, etc for your brothers and all I can give you is a Christmas wreath. Not only a Christmas wreath, but I have to make sure it is one that will live in the freezing cold, snow, and wind - outside. I should be buying you pretty little dresses, bows for your hair, baby dolls, and puzzles. I should be making sure you are warm and happy. I miss you my baby Bailey. I hope you know how very much I love you and that, although I don't get to spoil you now, you have all the love in my heart. Hopefully that is the best Christmas gift of all.
I love you, Bai!
Mommy

Angel Friends

2009-06-25T18:40:00.000-07:00

I have been so blessed to meet some amazing women in my life. Some through their service and friendship to me as we have ventured through "Bailey's Journey", others who have experienced their own journeys and loss of their loved little ones. Through this I have realized how very lucky I am to know that my sweet little girl is in the company of some AMAZING "Angel Friends". I saw this story and thought of that .. I know she is loved - here on Earth and in her new home in Heaven.

* Best Angel Friends * - Author Unknown
A beautiful little angel showed up to Heaven's gates.
Confused and unknowing the plan that for him awaits.
Then another little angel walked up and took his hand and said, "Please don't be sad you left, you're in the Promised Land."
"I'm glad to be here but I do not think I was to go. Perhaps there was a mistake, for my mommy wanted me so."
The little greeting angel gave a sweet smile and said, "My mommy wanted me too, but to Heaven I was led. You see, we do not get to choose when on Earth it's time to go. He gave us life, love and joy and a mother's womb to grow. The Lord still needs new angels to guide them down on earth. To watch over, comfort them, and help them see their worth."
"Is there still a way that I can sleep in my mommy's bed?"
The greeting angel grinned and said, "That luxury you'll keep. I visit my mommy nightly and softly sing her to sleep."
The little angel replied, "Then I think I'll like it here. I'll visit my mommy nightly and weaken her pain and fears. I love her and will keep her safe at night and in between; and let her know with a sweet memory that she is still with me."
The greeting angel gave her new friend a big hug and said, "Until our mommy's meet us here, let's be best angel friends."
"Okay," said the new angel, "that sounds good to me."
Then the angels sat and played keeping their mommy's in sight, humming the tunes to the song they would sing to their mommy's tonight...

8 Months.

2009-06-04T20:25:00.001-07:00

Happy Birthday my sweet little Princess.

It has been 8 months today since you passed away. As always, I have been wondering what you would be doing now. It is so hard for me to remember when certain milestones are.
I have been thinking about you all week .. thinking about how you would have already been 8 months old on Tuesday .. how time flies!
Tonight, as I had been thinking about you all day, I saw a little girl at the table next to us in the restaurant while I was at dinner with my co-workers. I asked how old she was and, of course ... 8 months. She was so cute. The Mom proceeded to tell me how her latest "trick" was the "Uh Oh Game". She would throw her binky on the floor and then look from Mom to Dad to whoever was around and say "Uh Oh" "Uh Oh" until someone would pick it up for her. She did this numerous times .. it was so cute.
Her Mommy gave her a plate of broken up bites of breadstick to munch on and she LOVED it as she gummed them to death.
Now I know what you would be doing .. you would be enjoying munching on "baby bites" of food and learning new words and sounds.

I miss you my sweet little Princess. Have fun with all of your Angel Friends and know that Mommy never never forgets you.
I love you my beautiful baby!

Things are looking up ...

2009-05-08T20:48:00.000-07:00

As many of you know, I tried to get Parker into some counseling shortly after Bailey died only to be told that all of the groups that we had been referred to had LONG (like over a year long) waiting lists. I put him on all of them and decided that I would work with him on my own. It seemed to be working .. for the most part. However, as you know from my last post ... it seems that the "Mom counseling" isn't working as well as I thought. Because of this I decided to go back to trying to get him into some additional programs. I just told myself I was going to do it if I had to drive somewhere and walk in and sit there until I could talk to someone (I've had trouble getting people to return calls). Well .. I think we have some really good leads for some counselors. I talked to a few on the phone who were VERY helpful and anxious to see him. They emailed me a whole bunch of info and he will start seeing them one on one until the next group session starts. Also, we have applied to several different locations of "Camp Erin" for this Summer and he is SO excited. Last, but not least, we also met with the School Counselor to let her know what was going on and she is going to meet with him once a week until School is out for the Summer just to check in with him and see if he needs to talk about anything. (He had his first appointment with her on Thursday - I had forgotten - and he came home from School with the biggest smile on his face and telling me how great his day was! First time THAT has happened in a LONG time! YAY!)
Phew! What a relief! It has taken time but maybe I will get my happy boy back again after all. I sure miss his smiles.
I love you, Parker!

For those of you that are looking for resources for the siblings of your Angel, here are links to a few that we have worked with or looked into:
* Caring Connections - University of Utah College of Nursing http://nursing.utah.edu/practice/caringconnections/index.html
* The Sharing Place http://www.thesharingplace.org/
* Camp Erin http://www.camperin.org

Bad Day

2009-05-02T01:58:00.000-07:00

Well, this is another one of those posts that you write but don't post and then you reread it and still don't post and then you wait some more and then finally decide to post. Why? Because putting yourself and your emotions out there is SCARY! However, I have said before that it was reading others blogs about their bad days and their "not so perfect" lives that make me realize that things are ok and it is ok to not be "perfect" and so ... I will do the same for others.

This past week was the worst week I have had since Bailey died. Nothing in particular and no special anniversary or date .. just a bad week. Everything I did I thought about her, I kept looking at her picture and seeing how beautiful she was and wondering what she would look like now and what she would be doing now. And, most of all, the biggest thing that is really, really bothering me .. does she even know who I am? Does she know I am her Mommy and that I love her so very much?!?!?!!
I know that I will be with my sweet Bailey again someday and I tell my boys all the time that she loves them and is watching over them. However, does she really know who we are? I mean .. she was only alive for 2 1/2 days and, during that time, she never even opened her eyes and looked at me. How can she know me? How can she know I am her Mommy? I know she knew my voice. I carried her for 9 months and I know she recognized my voice because she would turn her head when I would talk to her in the NICU but, still, how can she love me?

To top off the week of sadness and tears - on the plane on the way home on Friday I sat with a lady with an adorable little girl on one side (yes, I asked how old she was and yes, she was just a little younger than Bailey would be) and a girl who looked about 7 months pregnant on the other. Normally I deal with this ok. However, the little girl absolutely LOVED me .. and she was ADORABLE! She kept wanting to play with me. She kept reaching for me. She kept talking and smiling at me. This is a good thing, right? Not when I am having one of "those" days. I loved her and sat there with tears streaming as I watched her - so very cute! (Again, one of those "I don't want to ruin her day" things so I am sure she wondered why I was crying while looking at her little girl. No, lady, I am not psycho .. I PROMISE!)
Fast forward to landing .. I turn on my cell phone to check for messages between flights and it starts ringing the second I turn it on. It was Parker's School. Sparing you all the details let's just say that he had a "Bailey meltdown" at School. Apparently it was a bad week for him, as well. He has had his moments in the past but I really thought that he was getting better. However, this one was pretty bad to the point that the Teacher was quite upset. Parker said some pretty disturbing things and really just broke down and started crying and acting out and all I could think of was how could I get home faster than by plane!!!!

All in all, we all had a bad week. Granted, I had been out of town for two weeks for work and Chris had to go for 2 days this week, as well. My boys were taken very well care of by family and they LOVE them. But change is hard for all of us. I guess we had enough over the last year - we like our lives to stay the same now ... so we can predict and "own" what happens.
Things will get better .. I know this. But it is so hard. Hard to always be positive and say that everything will be ok. On top of me trying to deal with my own feelings I need to protect my boys. How can I help Parker when he is on the "waiting list" at 3 different counseling agencies and has been since last October? How can I help him when I have to be out of town for work to pay the mountain of bills that we have accumulated? How can I help him when I can't even help myself?
It will get better .. and we will have good posts soon! :)

Church

2009-03-26T18:09:00.000-07:00

PREFACE: LONNNNNG, rambly posting. I apologize in advance - just trying to put some thoughts down and they are somewhat jumbled. However, I felt it was important to share .. good with the bad, remember? :)

Isn't it weird how sometimes the place you think you would be the most at peace, the happiest, the most comfortable can bring on such different emotions?
Ever since Bailey died our whole family has struggled with going to Church. Not because we no longer believe .. not because we don't want to be there .. not because we don't know it is a place of love and comfort where we can be close to our Father in Heaven ... why then? Because we struggle with keeping our emotions "in check". We ABSOLUTELY know that it is because of our faith and beliefs that we were able to get through our trials knowing that we will, one day, be with our sweet Bailey again. We KNOW how much our Heavenly Father loves us. We KNOW that Bailey is watching over us and we will all be together again as an eternal family some day. It is probably these beliefs that make it so hard for us as we sit in Church each week. We know that we are loved unconditionally and that is probably why we are overcome with so many emotions when we are there. We try to be strong all the time. We try not to show our emotions or let the tears flow "in public". However, I find myself sitting in Sacrament Meeting with tears streaming down my face every week. It has been especially hard over the last month or two because I find myself sitting there with tears streaming either alone or with just Caleb - not with all of my "boys". Although we ALL know that we need to be there to once again be with Bailey, we struggle. I have made it a point to go every week - no matter how hard. I just finally decided that I didn't have to "hide" my emotions and if I sat there crying, I sat there crying. So that's what I do. Parker, on the other hand, decided that his solution was to not go. I knew he was struggling and, deep down, I even knew the reason. So I asked him why he didn't want to go one day. He said he LOVED his Teachers and he LOVES his Heavenly Father and he knows that Church is where he should be but that going to Church makes him think of Bailey and it made him too sad. I tried to talk to him about it and explain that Church is where Bailey would want him to be. But how do I explain and make him WANT to be there when I struggle with the same things? So .. I let him stay home. It seems we have finally gotten over that "hump" - at least for now - and he has started going willingly again after missing several weeks but I know that he will continue to struggle from time to time. When discussing this with Chris he said to me "If we all have such a hard time, why do we go every week?". Why? The answer is this .. it is part of healing. It is hard for us to be there because we feel our Heavenly Fathers love. It is ok to be sad there .. to show our feelings .. we don't have to be "strong" there and we will make it through. To be together as an eternal family and be with our Bailey again - we need to continue to show our Heavenly Father how much we love Him and continue to learn about the Gospel.

This years "theme" in Primary (Youth organization in our Church) is "My Eternal Family". Chris and I are Teachers and the boys are in Primary so we are all learning and remembering one of the great principles we believe in our Church - that we will all be together as a family even after we leave this Earth if we live the way we are supposed to and follow our Father in Heaven. Although you would think this would be a comforting thing for us, it can be tough at times. It is a constant reminder that we are here on earth without our sweet Bailey. Yes, we believe we will see her again .. but that will be years from now - that is still a hard thing. We are very grateful to know what we know and believe what we believe. Chris said it best shortly after Bailey died when he told me that he didn't think there was any way he would be able to make it through what we had without the knowledge of Eternal Families. And that is what we need to remember ...

"Welcome to Holland"

2009-03-25T21:05:00.001-07:00

I realize that many of you have already read this. I posted it on our family blog shortly after we found out that there were some problems with Bailey during my pregnancy. Although we ended up losing Bailey shortly after birth, I really wanted to add this to her blog as it helped us so much as we traveled along our Journey to get Bailey here. I apologize for the "double post" for those of you that follow both of our blogs but I truly love it.

Posted on "The Blake Gang" blog - August 2008:
My awesome Sister, Tammi, gave me this story she had read on one of her friends blogs. (I don't know her friend so I don't want to post her info without permission.) She gave it to me as it really applies to the situation we are going through with the upcoming arrival of our little girl, Bailey. However, I think that it could really apply to many other situations as well so I wanted to pass it along.

WELCOME TO HOLLAND
By Emily Perl Kingsley, 1987. All rights reserved.

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.
--------------------------------------------------------------
We have purchased our new guide books and are starting to learn our new language for our trip to Holland. We realize that, although it wasn't the trip we had planned, we are anxiously awaiting our visit to Holland - with all of our family - no matter how long or short the visit may be.
I love you, Sis!

Healing

2009-03-25T20:53:00.000-07:00

Today was the first day that I have really gone back and read through Bailey's Journey from beginning to end. I have tried in the past but have never been "strong" enough to make it without breaking down in tears and having to stop. I admit that I found tears streaming down my face from time to time today, too, but I made it through. I have been talking with some ladies who are currently pregnant with babies diagnosed with TD and wanted to go back through and compare my situation with what they are going through currently. Although we didn't know Bailey had TD while in utero, there is so much now that I can see the same as what these ladies babies have right now. I also pulled out all of Bailey's ultrasound records and looked at them and read the letters from the perinatal specialists to my OB. Is it weird to read through and relive everything? Maybe. But I think it is a part of healing, too.
Although I questioned starting this blog I am so very glad that I did. I am glad that I have record for the future of our thoughts and feelings - everything we went through as we waited to get our sweet daughter here.
I am also so grateful to have all of the wonderful words of kindness from all of our great friends and family. I have a book I am putting together FULL of letters and emails from people from all across the US. Some are friends we have known a long time, relatives from near and far ... others are friends of a friend of a friend that we have never met but, yet, were a part of Bailey's life in their own way. She was a very loved little girl and we are so lucky that we had so much support throughout our journey to get her here. I truly know that all the prayers on our behalf helped us get through what seemed at times unbearable.
We love you all! Thank you - we could never repay you for your love and kindness.

I Am A Child of God

2009-03-13T09:10:00.001-07:00

A few days ago I read the words to a special verse of the song "I Am A Child of God" written just for Families of Children who have left too soon. Coincidently, that very same day, a post appeared on an entry here on Bailey's blog with the very same words. I am posting them here so everyone can easily read them. This is such a powerful song and I cry every time I read the words. It is so true and it just reminds me, once again, to work hard so that our whole family will be together again someday. Our sweet little girl is watching over us and waiting for us.
Thank you for sharing!

I am a child of God and He has called me home.
My earthly journey's through but still, I do not walk alone.
He leads me, guides me, walks beside me, helps me find the way.
He welcomed me with open arms. I live with Him today.

I am a child of God and I have gone ahead.
My earthly life was brief but oh, such peace and love you gave.
You loved me, held me, stood beside me and though I cannot stay
You gave me much to help me and I live with Him today.

I am a child of God and I will wait for you.
Celestial glory shall be ours, if you can but endure.
I'll lead you, guide you, walk beside you.
Help you find the way.
I'll welcome you with open arms
One bright Celestial day.

--Donna Kulliard

What would you be doing now?

2009-03-10T01:58:00.000-07:00

Hi sweet Bailey -
I have been thinking a lot lately about what you would be doing now if you were still with us. The first years of life for kiddos are so fun! It is so fun for a Mommy and Daddy to watch their Children learn new things and so exciting to see them accomplish things. We were prepared for the fact that you may be "different" and would learn at different rates than most Children and that makes me think .. What would you be doing now? If I remember right from your Brothers, you would be about the age that you may be starting to teethe. You would probably be starting to sit up on your own. Would you be rolling over yet? I can't remember for sure but I think so? You would be giggling and smiling .. in response, of course, to all the hugs and kisses you would be getting from your Mommy, Daddy, and big Brothers.
I am not writing this because I am sad .. just wanted you to know that I think of you every day .. and wonder .. What would you be doing now?
Love you my little Bailey Bai ...
Mommy

Bailey's headstone

2009-03-09T12:58:00.000-07:00

As all of you know, Bailey's headstone has been a MUCH anticipated "gift". It bothered me so much that we did not have a headstone on her grave and there was no possible way we could afford it with the pile of funeral and medical expenses we still have. However, my sweet Sister, Melinda, took us to purchase a headstone several months ago and it has just now FINALLY been put in. I am SO happy!

I had already made my weekly visit or two to "visit" with Bailey last week. However, I was on my way to see my Mom and Dad with the boys and I decided we would make a quick stop to check on things. (We had been having some MAJOR winds and I thought maybe we should check on the flowers to make sure they hadn't been blown all over the place.) Well, we pulled up thinking we would be making a quick "check in" stop and were SO excited when we realized that the headstone was there. Parker jumped out of the car and ran over and Caleb kept yelling for me to "get me out" of his car seat. It was obvious that it had just barely been finished as there was mud everywhere and our baskets of silk flowers were upturned next to our grave and blowing all over the cemetary. Parker and Caleb gathered them up and we got them all put back in the baskets and placed back on the grave.

In addition to the excitement we had over her headstone finally being in place, we had such a cute experience with Caleb there. I wasn't even sure Caleb would have any idea where we were or why. He is so young and has only been to the cemetary one time since the graveside service and he stayed in the car that time. However, as soon as he got out of the car he ran over to her grave and said "Mommy, Parker, Bailey sleeping in there" and pointed to her grave. I have no clue how he knows this - it is truly amazing how much little ones know and how in tune with their Heavenly Father and his plan they are. Once we got the flowers all cleaned up and took a few pictures we started walking back to the car and Caleb told me to "wait a minute" and went running back to the grave again. He started to pick up one of the baskets of flowers. I told him he needed to leave them there for Bailey and he looked at me with a stumped look on his face and said "But Bailey is sleeping". I guess he has a point - Bailey doesn't need flowers - she is sleeping! :) He is such a cute boy and I am amazed every day how much he understands. I am so very glad that he knows who his Sister is and that he loves her as much as we all do.

Lost little ones

2009-02-11T16:12:00.001-08:00

My Mom and I were talking the other day about how many babies are dying lately. I don't truly believe that there are really more babies dying now then normal. I am sure that we are just more observant and notice it more than we did before. It has been amazing to me how many people have talked to me since Bailey's death and told me that they had lost a little one previously in their life. It is also so sad how many people go through miscarriage which, although earlier on and different from our situation with Bailey, is truly the loss of a loved child. Chris and I have been through both situations - miscarriage and the loss of a full-term baby - both saddened us. It is unfortunate that people have to deal with such sadness and loss. However, it is also inevitable and, as we believe, part of a greater plan. Blessings come and lessons are learned from all situations - we just need to be aware and learn to recognize them.

With this said, the reason I felt the need to post today is this ..
Chris and I have discussed this numerous times and although we have experienced what we have, we still do not know the right words to say to someone who loses a baby. There is nothing you can say that is going to make the hurt go away. It almost seems trite to say "It will get better". However, coming from someone who has experienced the loss ... "It WILL get better". I still have my "bad" days. I still have moments of extreme sadness when I realize I will never have a little girl to dress in beautiful dresses and cute little bracelets or put cute little curls in her hair. I won't experience buying a dress for my Daughters first Prom. Chris won't walk his daughter down the aisle or have to "quiz" her dates. But you know what???? Life will go on .. and it WILL get better! We will probably always have "bad days" - especially when things come around that make us think of how fun a cute little GIRL would be. But .. we have our friends and family and, most importanly, we have our ADORABLE BOYS and each other. We, with the help of all of you, have pulled together and made it through the worst of it.

To those of you that are reading this because you have experienced the loss of a baby - we pray for you and our hearts go out to you. We are ALWAYS here to listen and sometimes that is what it takes. I never would have made it through without my friends that I knew were there to listen. They didn't SAY anything - but I knew they cared and wanted to do something although there was nothing they could do to change what we were going through.
So please .. just remember ... it's not WHAT you SAY but just a hug or smile and knowing you are there that got us through and we are there for all of you experiencing the same things .. we love you .. and it WILL get better.

Happy 4 month Birthday!

2009-02-02T09:58:00.000-08:00

Love you, Bailey.
Thinking of you and missing you ..
Mommy

Continued blogging

2009-01-27T16:18:00.000-08:00

Hi everyone!
Some may think it is weird that I am still updating this blog now and then. I had every intention of closing the blog when Bailey passed away. However, I want to share with you the reasons I have not done that.

Throughout the course of Bailey's Journey, I was referred to many many blogs created by Moms who have lost their little ones. They belong to an awesome category of women that I, regretfully, get to be a part of. We are "Angel Mommies". Although it is not a group that I would have chosen to be part of, it is a "title" that I now have that I will do everything I can to make the best of. Because of this, I want to be a strength to other people who find themselves in similar situations to those that I found myself in over the last year - the fear of what will come of your "sick" baby, coping with a roller coaster ride of ups and downs with your baby, or the death of your sweet, sweet baby. The many blogs that I have been directed to throughout our experiences have been such a strength to me. They have shown me that "life can go on" and helped me realize that I am completely normal and the feelings I have - good and bad - are feelings that everyone has when they are dealing with their grief. Not only did they provide me strength during the roller coaster ride and Bailey's eventual death but I still go to them often - when I need to remember that it is ok to be sad ... and .. it is ok to be happy.
I have had so many people contact me after they have been directed to our blog. Everyone has their own reasons. Everyone has their own challenges. And everyone has their own situation. If our blog can help just one person know that they are "normal" and that we have been through the things they are going through and we are making it, then I want it to do that! This is one of the main reasons that I will continue on with Bailey's Journey.

I also truly believe that through sharing my thoughts and feelings to help others see how we deal with things (or don't deal with them in some cases), I help myself heal, in a sense.
I need to be able to share my feelings. I need to talk about Bailey. She is my daughter. She is a part of our family. We didn't go through all we went through - the decisions, the preparation, the pain, the worry - for nothing. A very dear friend of mine who is also an "Angel Mommy" gave me some very good advice. She told me that if she didn't recognize her baby who had passed away then "it was all for naught." I have never forgotten that and I never will. People are often times very uncomfortable talking about Bailey to us. I understand why and I do my best to make sure that they know that it is ok and that they don't have to be nervous about it. But, still, there are days when I don't want to make them feel better. I want them to make me feel better. Again .. something I need to get through but something that it helps to be able to "blog" about.

These are the main reasons that I feel like I want to continue to blog. I would love to have you continue to follow Baileys Journey with us. Of course I had planned to continue her blog to update everyone on her progress as she grew bigger and stronger. That wasn't meant to be. However, as many of you know, our beautiful little girl - Bailey Grace Blake - touched the lives of hundreds and hundreds of people even before she was born. She was loved more than any newborn that I know. Good things came from her experiences - to our family and friends. We have seen the proof! I want to continue the good that she has already spread and I will do this by helping others with sharing our thoughts as we grieve and grow from her passing.

We love you all! Thanks for everything you have done - and continue to do - for us!

Hawaii trip

2009-01-20T00:53:00.000-08:00

Last week we went on a great trip to Hawaii with Chris's work. It was really nice to get away from the cold, cold winter here in Utah and spend some time with good friends. The trip was planned quite some time ago - before I even knew I was pregnant with Bailey. Therefore, when we found out that Bailey was coming we decided we would just take her with us since she would still be so young. Then, as the pregnancy progressed and we found out about the potential problems with Bailey (thinking that she had OI), we made arrangements and figured out the best way to travel with her and her potential medical equipment. I was so looking forward to spending some alone time with my little girl. (Chris golfs and I hang out at the pool - Bailey would be my pool buddy. *smile*)
As the time neared for the trip and Bailey had passed away, I continued to look forward to the trip - some time for just Chris and I. However, the closer it came, the more anxious I became. Apparently, I am having some major separation anxiety from Parker and Caleb. It isn't that I didn't think that they would be well taken care of. I KNEW they were in good hands. And it wasn't that I thought I could take care of them better than anyone else. Nothing like that .. I just don't want to be away from them. I am not 100% sure but I am attributing it to the fact that I lost my little girl - I don't want to be away from my boys, too. Silly, I know. But something I am dealing with. I have even had some issues sending Parker to school. I kept telling myself that that was because he was struggling so much emotionally and I felt I needed to "protect" him. However, he is doing better but I still have those feelings. *SIGH* Will I EVER feel "normal" again?
In addition to my worries about leaving the boys came my sadness at missing Bailey while in Hawaii. My thoughts kept wandering to "I would be snuggling Bailey here on the beach" or "I wonder if she would like the water", etc, etc. No matter how I tried, I couldn't keep my thoughts from straying to the time I should be spending with her. Then there was the baby on the Beach with her Mommy, Daddy, and big Brother. She was adorable in her sun bonnet and little sundress. She was barely learning to sit up and she was giggling and cooing happily. I asked her Mom how old she was and, as I had guessed, she was 4 months old - just a little older than my Bailey would be. Again, I know these things will get easier/better with time but it is still so hard to see little girls - I was so looking forward to dressing my baby Bailey in her cute little dresses and putting her cute little bows in her hair.

Don't get me wrong - we LOVED our trip and had a very enjoyable time. We are so very blessed that we were able to go. With all of the struggles we are still having financially due to the medical expenses, funeral expenses, etc there is very little money left for us to do things together so it was a VERY welcome vacation. Thank you, thank you, thank you, Allied, for the paid vacation. It meant so much to us!
Life CAN go on - even with ups and downs - and, luckily, the downs are getting fewer.

Hello, Bailey

2009-01-06T13:30:00.000-08:00

Hello, my pretty little girl.

It is snowing outside again today and I keep thinking about how I would love to have you here to snuggle with. You would still be too little to go out and play in the snow with your brothers but it would be so fun to be able to bundle you up in your warm winter jammies and take you out to watch them. Instead, we all bundle up to come and visit your grave.

I imagine you would be starting to giggle and smile by now. I remember those days with your brothers and how much joy it brought to hear them gurgle and giggle and make all those happy baby sounds.
There is not a day that goes by that I don't think of what stages you would be in ... what you would be learning to do .. and how happy I would be to watch you reach those milestones.

I know that there is a reason that you are not here with me, Bailey. One day I will know what that reason is. But, meanwhile, I miss you so much. I love you my little "Bailey Bai".
Mommy

Bailey's present

2008-12-21T14:32:00.000-08:00

I have mentioned to many of you how very important it was to me to get a headstone to put at Bailey's grave. After all of the funeral expenses, the burial plot and the medical bills that we are still working through, I just couldn't find enough money to do it. Our initial goal was to do it for Christmas. It was going to be our Christmas present to Bailey. However, it quickly became very apparent that we still weren't going to be able to afford it that soon so I made an alternative goal - Bailey's 1st Birthday. I decided if I couldn't do it now then I would save and get it in to celebrate her 1st Birthday next year. This was the best I could do.

I visit the cemetary often - normally at least once a week. Everytime I go there I struggle because there is no headstone. I did have the funeral home make a temporary and it is actually much nicer than I expected so there is something there but it still breaks my heart every time I go for some reason. I can't explain it - I don't know why - but it really bothers me that we havent been able to properly mark her grave.

One day a few weeks ago my Sister, Melinda, called me and asked me if Chris and I could go to lunch with her that Friday. Of course I said "Yes". We set a time to meet and I didn't think another thing about it. However, as the day came closer, my suspicions (and Chris's ) became stronger. We had no idea what was going on but we knew something was. Finally on Thursday night (the night before we were supposed to be meeting for lunch) Melinda called me and told me she couldn't keep it a secret any longer. She was concerned that we were going to be upset with her and she wanted to tell me what she had planned. She had made an appointment for us to go and pick out a headstone for Bailey that she wanted to purchase for us. I was so happy I was speechless. I hated to accept such an expensive "gift" as I had been looking into them and knew how much they cost. However, I really didn't want to turn down the offer as I so wanted to get this done. I still have no idea how to show my gratitude to my Sister for this wonderful thing that she did for me!!!!

We met Melinda the next day and were able to pick out a headstone for our sweet Bailey. Melinda paid for it and made all of the arrangements to get it set. We were actually suprised to hear that they were going to be able to get it in before Christmas. How excited I was. As Parker put it - "It can be Bailey's Christmas present.". Unfortunately, due to the many snow storms that we have had over the last week and a half or so, they have been unable to put the stone in yet. However, we are still hoping that it can be Bailey's wonderful Christmas gift. I know that it is for me. I am so very grateful for my Sister and her willingness to help us do this. It is so important to me and I feel such a sense of relief knowing that it will be done soon.

Thank you, "Annie". We love you!!!

Parker's talk

2008-12-21T14:24:00.000-08:00

I have been asked several times to post the talk that Parker wrote and then gave at Bailey's graveside service and I keep forgetting to do it.

As many of you know, when we were planning the program for the graveside service Parker asked if he could "say a few remarks". Of course we told him he could. I asked him a couple of different times if he would like me to help him write down his talk and he kept telling me "No Mom, I am good." To be honest, I was a little worried about what he was going to say or that he was going to get up there and freeze so I kept pushing. Finally he said to me "Mom, when you love someone you don't write down your remarks, you just speak from your heart." Boy did I feel stupid. How smart my little boy is and how strong!
Eventually, however, I did get him to write down some of what he wanted to say "just in case". He wrote almost an entire page of feelings consisting of "being able to play with her in heaven" and "loving her even if she was going to be in a wheelchair", etc. With my help he cut it down to a short but very sweet talk that he delivered so bravely at his sisters graveside service. Those words are below:

"I love my sister, Bailey, very much. I love her more than anyone in the World loves her. Me and my brother, Caleb, wanted to play with her and take care of her. When we found out she was sick I was very sad. I will miss her very much but know I can play with her when I see her in Heaven. My little brother, Caleb, doesn't understand what happened but I will tell him about Bailey when he is older because she will always be our Sister and we will always love her. Bailey will always watch over me from Heaven and be my Angel."

It happened again

2008-12-16T21:52:00.000-08:00

Chris and I have come to call it "ruining their day". It is when people ask you "How is the baby?" and you have to respond by saying "Actually, she passed away when she was 2 days old." It just seems to ruin their day. It is uncomfortable - they don't know what to say and I do my best at trying to make them not feel bad for asking but no matter what .. there is that tension in the air.
Today I had to go for an ultrasound on my leg to check for blood clots again. The radiologist asked me why I had been on Lovenox shots for the last several months and I told her it was because I had been pregnant. She then proceeded to ask me what I had and I told her a little girl and then it came ...
Radiologist: "How are you feeling since she was born?"
Me: "Good."
Radiologist: "And how is the baby doing?"
(Silence while I decide how to respond.)
Me: "Actually she passed away when she was 2 days old."
(More silence.)
I HATE these conversations. Not because they make me sad but because I am still struggling to figure out the best way to handle them. Should I just avoid them by saying "Fine" and moving on. I just have a hard time with that because she isn't "Fine". However, sometimes I am just not up to explaining over and over what happened to my precious Bailey.
Hopefully I will figure out the best answer someday. For now, I will just continue to "ruin peoples days".

2 Months

2008-12-02T23:54:00.000-08:00

Today was the 2 month anniversary of Bailey's birth. It has been a very rough couple of days at our house. Parker came home from school the other day and told me that he never wanted to leave home because he is afraid that if he leaves that the rest of his family will die, Chris was mad at the World because he lost his precious baby daughter. He told me he has a hole in his heart and he doesn't know how to fix it. Unfortunately, neither do I. Meanwhile, I miss my darling daughter immensely. I was supposed to be able to shop for her this Christmas, to buy "girly" things, to have my baby to celebrate the Holidays. I have to keep telling myself - and reminding my family - Angels abound at Christmas time and we have our own.

Sorry to be such a "downer" but I felt that it was important to make sure that even the "bad days" are documented now and then. I have received so many emails from other Parents that have lost Children telling me that they read our blog often. I think people need to know that it is normal and ok to hurt. (At least this is what I am told.) Although our family really does try to be strong and has done fairly well, we recognize there are going to be those "bad days" too.

After having my long talk with Parker after school the other afternoon, he indicated that he needed to go see Bailey. I have never taken him back to the cemetary since the graveside service. I go weekly but usually go alone. We had already planned to go as a family next week to take a little Christmas Tree to put on her grave but he said he couldn't wait. As we were talking he kept saying "I just need to see her" and I realized that I probably needed to make it clear that he wouldn't see her in person. He said that he realized that and told me that he just needed to see her name or something. (Unfortunately we haven't had enough money to purchase a headstone yet but I did have the funeral home make us a temporary marker which is there - phew!) Anyway - we drove over and Parker had a talk with his Sister. He then talked to Bailey's "friend" (the grave next to her is a baby boy who died at 5 days old). Little did I know that he was going to "bring them home" with us. Once we had gotten back in the car to head home he started talking to both of them. Yes, it is very disturbing to me when he does this (he has done it a couple of times) but I have been told that it is normal for him to have her as an "imaginary friend" from time to time.
Anyway - he told me that she goes with him to school sometimes and that she has been watching him practice the song for his School Christmas program. He said that she learned it really fast and she sings VERY LOUD. I told him that is because she is an angel and angels love music.
Who knows? Maybe she is there with him - when he needs her.

I love my boy and the faith, hope, and love he has for his Sister.

Bailey and her Family

2008-11-05T19:39:00.000-08:00

I am going to figure out how to do a slideshow so that I can include more pictures without just adding them all separately but, for now, this is the best I can do.

These are some of the pictures that were taken by NILMDTS (photographer: Ted York) on October 4th, 2008. We had removed Bailey's tubes but she had not yet passed away so we were able to get some family pictures while she was still alive.

Caleb was a normal 2 year old and it was LATE so he wouldn't sit still very well so we got only a couple with him but there are some great shots of Parker and Bailey - the sister he loved so much!

As I mentioned above, I will put just a few on this post but then I will figure out how to do a slideshow and add some others later.

Poem

2008-10-23T11:47:00.000-07:00

This is a poem that was given to us by some friends at Bailey's funeral.
It makes me cry everytime I read it but it is so comforting and so true in our situation.
I love it!

A sweet little child
at a party one day,
when toys were being given away,
discovered a broken one,
and with a smile, said:
"I'll take it.
You see, I know my Daddy
can fix anything,
and soon it will be
good as new."

And once, perhaps, in heaven one day
when bodies were being given away,
a sweet little child
discovered a broken one,
and with a smile, said"
"I'll take it.
You see, I know my Father
can fix anything,
and someday it will be
good as new."

Now we, in all our deepest grief -
in searching for that sweet relief -
are clinging to that hopeful knowledge, too.
(by: Serena DeGiulio)

This is what our sweet Bailey did. She may have come to Earth with a broken little body but her Spirit was strong and now she is with her Heavenly Father, who has fixed her broken body for her, and will be waiting for us to join them one day. She is perfect!

"Her Journey's Just Begun"

2008-10-23T08:16:00.000-07:00

This was a poem that was on a card that our sweet neighbors gave us after Bailey's death. I thought it was perfect and wanted to share it.

HER JOURNEY'S JUST BEGUN
by E. Brenneman

Don't think of her as gone away -
her journey's just begun,
life holds so many facets -
this earth is only one.

Just think of her as resting
from the sorrows and the tears
in a place of warmth and comfort
where there are no days and years.

Think how she must be wishing
that we could know today
how nothing but our sadness
can really pass away.

And think of her as living
in the hearts of those she touched ...
for nothing loved is ever lost -
and she was loved so much.

Viewing pictures

2008-10-16T08:10:00.000-07:00

Bailey looked beautiful at her viewing.

She was such a perfect little angel. I guess that is why she is back in Heaven now - she was so perfect she didn't need to stay here any longer.

I love you my sweet baby daughter.

"Bailey's Friends" fund

2008-10-15T13:04:00.000-07:00

We promised that we would post more information regarding the fund that we have set up in Bailey's name. We will initially be using some of the money for our own medical and funeral expenses incurred during Bailey's birth and death. However, we are then going to continue the fund in Bailey's name and will be working to convert it to a 503(c) fund called "Baileys Friends" to help assist other Parents who experience the loss of a newborn. Our initial plan was to donate the funds to research for Thanatophoric Dysplasia. However, because this is a disease that really has no cure and can not be survived, we have decided, instead, to set the fund up to assist with medical/funeral expenses for Parents suffering the loss of their newborns instead. As we have gone through this experience we have realized what a burden the expenses can be when you are already suffering the extreme sadness of losing your Child. It is another stress that Parents shouldn't have to endure. However, it is real. Because of this, we want to help. We will provide more information as we develop our documentation for applying for assistance, etc. However, we wanted to let everyone know what we would be using this fund in our sweet Bailey's honor for.

Donations can be made at any Mountain America Credit Union to the account in Bailey Grace Blake's name. If you are out of State, you can go to your local Credit Union and give them Mountain America's information and they can take the donation there for you.
We appreciate your help during this trying time in our life and hope that we can continue to help others as we have received so much help. We honestly believe in "paying it forward".

Obituary

2008-10-07T08:36:00.000-07:00

Below is the link to Bailey's obituary in the Salt Lake Tribune and the Deseret News.

http://www.legacy.com/DeseretNews/Obituaries.asp?Page=Lifestory&PersonId=118516386

UPDATED: The link above expired. Here is a new one to the same obituary but through the Funeral Home.

http://www.meaningfulfunerals.net/fh/obituaries/obituary.cfm?o_id=274831&fh_id=10376&s_id=C3D160A7DBC926092DC7883D49B0598C

Pictures of Bailey

2008-10-06T21:30:00.001-07:00

We will, of course, be updating with all of the most recent details of Bailey's journey as soon as I have a couple of minutes to sit down but wanted to at least post some of our pictures of her as soon as possible as many of you have been asking for them.
As an FYI - the diagnosis that had been made for Bailey in utero ended up being incorrect.
Bailey did not end up passing away due to her complications from Osteogenesis Imperfecta but, instead, from a disease that has even a lower survival rate - a disease called Thanatophoric Displaysia. We will be providing information regarding this horrible disease that took our sweet baby's life in a later post.
Meanwhile, please enjoy some pictures of our darling angel, Bailey.

Proud big Brother - the day after birth.

Daddy and Bailey right after finding out her new diagnosis and fatal prognosis.

Mommy and Bailey the day after birth.

Bailey and both of her brothers right before telling the boys of her fatal prognosis and removing her tubes.

Mommy and Daddy holding Bailey.

The Blake Family. (Shortly after removing Bailey's tubes.)

The ring and bracelet that the NICU unit gave us for Bailey. Her nurse put them on her and took this picture shortly after her death.

We love you, Bailey! Sleep well our little Angel.

Bailey Grace Blake - viewing information

2008-10-06T07:34:00.000-07:00

As most of you know, our sweet little Bailey passed away Saturday evening.
We will be updating her blog over the next few days but wanted to let all of you that have been such a great support to us know about her viewing in case you would like to come and see her.
It will be held Tuesday, October 7th at the Jenkins-Soffe Funeral Home in South Jordan, Utah from 6 - 8 in the evening.

Many of you have called and asked about sending flowers. In lieu of flowers, donations can be made at any Mountain America Credit Union in the name of Bailey Grace Blake. Donations will be used to help with medical/funeral expenses and then to begin a fund in Bailey's name to support other Parents with the loss of a child.

Jenkins-Soffe Funeral Home
1007 W. South Jordan Parkway
South Jordan, UT 84095

Thanks, again, for all of the support and love you have expressed.
We love you!

"Faith"

2008-10-04T22:30:00.000-07:00

As you already know, telling Parker that his Sister was not going to live was the hardest thing I have ever had to do in my life. Even harder, however, was trying to explain to him why his "Faith" and prayers had not worked.
When Bailey continued to fight for her life and lived longer than anticipated, we were able to bring the boys back in to see her while she was still alive but not on her respirator. It was then that Parker kept saying to me things like:
"Look Mom, her color is coming back."
"I have been praying all day for her. She is going to live."
"I am the only one that has faith that she will live. Why am I the only one with faith?"
How do I explain to my darling Son that no matter how much faith he has and how many prayers he says, he could not save his sweet Sister? I had already explained that sometimes our Heavenly Father answers prayers in different ways than what we would want - but that just didn't seem to be comforting him.

On Sunday, when we went to pick Parker and Caleb up from my Sisters house, where they had stayed the night before, I knew that Parker was still full of hope and "faith" as soon as he came to the door. He was looking past me towards the car with a big smile on his face. He was looking for his Sister. What should I do?
I chose to go inside and see what happened. It took about 20 minutes before he finally said something but then he came to me, sat down, and in his very grown-up voice said:
"So Mom, How'd Bailey do?"
While trying to hold back tears I said "She did fine."
P: "So is she alive?"
Me: "No, honey. She isn't."
P: Slowly stands up and walks away.

HEARTBREAKING! So grown up yet still my little baby boy in so many ways.

I love you, Parker. I love you for your faith. I love you for your prayers. And I love you for your being the tender-hearted, smart boy that you are. I know you will miss your Sister terribly but I am so thankful to you for talking to me about your feelings and asking the questions you have so that you will understand things that a boy your age should not have to but, yet, you do.
You will always have your angel Bailey in Heaven watching over you!

Saying Goodbye

2008-10-04T08:00:00.000-07:00

On Saturday, Chris and I spent much of our time over in the NICU holding and loving Bailey. Normally Parents are not allowed to hold their NICU babies. However, due to the circumstances, we were allowed to hold our sweet Bailey. We spent time together as well as time separate - one on one - with our darling little girl. As the evening neared, we became more and more anxious. Mary and the NICU nurses had arranged to have Bailey moved to a private room around 4 PM so that we could have some privacy when family came to see her as well as for us to give her her blessing. The plan was for the boys to come around 4 PM so that we could tell them the news before the rest of our friends and family arrived around 6 PM. As I have told many of you - the hardest thing I have ever done in my life so far was to tell my sweet, big-hearted 8 year old that his little Sister - the one he had waited for for so long and was SO proud of - was going to die. I had no idea how I was going to do this. However, I made it through and, after tears from all of us, we were ready for everyone else to join us.

So many people came to say their Goodbyes to Bailey. Many of our close friends and family members came and got a chance to hold her while she was still alive. Bailey's nurse and respiratory therapist were so patient and so helpful in assisting us in moving her from person to person with all of her tubes, etc. It took close to 2 hours for everyone to have their turn. It was long - but so worth it. We then proceeded to gather for her blessing. Her Uncle Rick gave it to her with our close friends and family members participating. It was beautiful!

It was then time to remove her tubes. We asked everyone to leave but Chris and I. My Sister and her Husband were staying with the boys outside so that they wouldn't be present when she passed away but would still be able to come back to have their pictures taken with her (we had made arrangements for "Now I Lay Me Down To Sleep" to come back that evening). We were told that it was unknown how long she would make it once the tubes were removed but, most likely, it wouldn't be more than a 1/2 hour. Little did we know that Bailey would continue to be the fighter she had been throughout her entire journey. Bailey lived just over 2 1/2 hours after removing all of her tubes. Chris and I both got to hold her. We would see her stop breathing, her little hands would turn blue and she would begin to get cold. We would tell the nurse that we thought she was gone and she would check her little heart ... still going strong. After an hour her heart was still beating at 88 beats per minute. She did not want to leave. She would take a deep breath and gasp for air and that would give her just enough to continue on. After about an hour we decided to let the boys come back in. They were able to come in and hold their Sister while she was still living, breathing without her respirator. We got some wonderful pictures taken and then sent the boys home to bed. Chris and I then continued to hold and love our little Bailey. We saw her struggling so hard to continue breathing. We got to the point where we were begging her to "let go". We wanted her to "go home" where she could be in peace. We didn't want her to struggle. We didn't want her to hurt anymore.
Finally, while I was holding my darling baby in my arms, I felt her take one last big breath and I knew that was the final one. I looked at the nurse and said "She's gone". They checked her statistics and determined the same thing. My sweet baby had gone home to heaven to wait for us.

As silly as this may sound to some, Chris and I are confident that Bailey waited just a little longer to pass away because she needed to know that her Mommy and Daddy were ok. We were really struggling with her passing away right after we removed her tubes. However, after saying our goodbyes and watching her struggle we realized that it was best for her. It was only then that Bailey felt that she could pass away knowing that Mommy and Daddy would be comforted and knew that we would see her again someday.

New Diagnosis/Prognosis

2008-10-03T10:00:00.000-07:00

On Friday, October 3rd I received a call from the NICU. They indicated that Dr. Ward (head of the Neonatal group), Dr Boto (Geneticist), and Dr Eller (my great OB) wanted to come over to visit with us that afternoon and would like to make sure that both my Husband and I could be there. They said that they had gotten the test results back and wanted to discuss them with us and tell us what they had found regarding a new diagnosis. (They had been performing many tests on Bailey to determine exactly what she did have since there was obviously a problem - although it wasn't OI.)

I will be honest - I had a horrible feeling about it. However, I was trying to be so positive. After all, everything had been going so much better than expected so far. Right?

I called Chris to make sure that he could be back to the Hospital by 3 PM because he had just barely left to go and take Parker home from visiting his Sister. The plan was for him to take Parker to his work to show his friends some pictures of Bailey, then take him to football practice and spend some time with him that evening but we would just have to work something else out. I needed Chris to be with me for this.

Well, the time came. The Doctors came. It was bad news from the start. Dr. Ward started by saying "Well, yesterday you gave me the name of 'Dr Doom and Gloom' and, unfortunately, I am here to be that again today." We knew then it wasn't good news. They then proceeded to tell us that the new diagnosis for our sweet Bailey was Thanatophoric Dysplasia. They explained to us that nobody ever survived this disease and that the best thing for Bailey was for us to make the decision as to when we would take her off of her respirator. They then gave us some documentation on the disease that we could read and asked us if we had any questions.

What do we say? We had never heard of this disease ... we had no idea that this was coming ... and what happened to our hopes and our happiness that she had been doing so much better than had been expected? What happened to the positive feeling we had because she didn't have OI? Of course we had questions - but, right now, we had no idea what they were.

(NOTE: I have to put a note in here regarding Dr. Ward. Although Chris jokingly nicknamed him "Dr Doom and Gloom" he is an incredible man. Yes, he had to deliver us bad news. However, he helped us understand what was best for our little girl. He gave us the news as soon as he knew it. He didn't prolong things. He gave us news as he had it. What an awesome man! As Chris told him .. "his job just sucks".)

The Doctors told us to think about when we might want to remove Bailey's tubes and not to rush any decision. They said that there was no rush and that Bailey was being kept out of pain and comfortable and would continue to be until we made our decision.

We talked about it that afternoon and decided that we would wait until the next evening so that we would have the day to spend with her and time for family and close friends to come and see her while she was still alive. It was also very important to us that we had the opportunity to give her a blessing.

We had another incredible support - Mary, the Social Worker that worked in the NICU at the Hospital. She came in to talk to us and helped us SO MUCH! She was there with us the entire way - from the moment we were delivered the bad news until the moment Bailey took her last breath and we left her to return to our room. What another INCREDIBLE PERSON! I don't know what we would have done without her. Not only was she there as a support to us but she helped SO MUCH with our boys as we were saying our goodbyes to little Bailey. There were so many times when I felt I needed someone and it was Mary that I was asking Chris to find.

Bailey is stable

2008-10-02T10:00:00.000-07:00

We were told that it could take an hour or more to get Bailey stablized so that Chris could go in and see her. However, within close to just a half hour, they had already come to tell us that she was doing better than expected and .. she had no broken bones. What?!?!?!!! No broken bones???? But we saw them on the ultrasound. She has OI. How could they say that she has no broken bones now? What a happy day! Our Bailey was alive and doing better than we thought she would be doing. My sweet daughter was here!

As I laid on the operating table getting stitched up and listening, as best I could, to the discussions going on between the Doctors I couldn't help but be so very anxious to go and see my sweet Bailey. She was here - she was alive - and she wasn't broken.

I heard the Neonatologists ask for her cord blood for testing and it was taken to the window. And I heard them give Chris the update that she was stabalized and breathing with the help of a ventilator. I couldn't wait to see her!

Once I was sewn up and taken to recovery, Chris was able to go and see Bailey. He came back and the smile on his face told me that everything was going to be ok. Meanwhile, Julie from "Now I Lay Me Down To Sleep" had come to take pictures. My great friend, Heather, had set it up for them to come to take some pictures when we found out that Bailey may not survive so that we would have something to remember her by. However, now that she was doing so well, I hesitated to have her take them. However, she said she would take a few anyway. As soon as the Doctors said I could go Chris and our nurse took me in my bed into the NICU to see my beautiful daughter. We weren't allowed to hold her but I got to hold her little hand, kiss her little cheek and tell her I loved her. Julie took some pictures of us - one that will always be one of my favorites - and then I was taken to my room to begin my recovery.

She cried!

2008-10-02T08:30:00.001-07:00

Bailey Grace Blake was born at 8:30 AM on October 2nd, 2008. She weighed 6 lbs and 5 ozs (much more than we anticipated) and was 16 1/4 inches long.

And ... she CRIED! We heard her CRY!

We had been told not to anticipate her crying and that it didn't necessarily mean anything was wrong if she didn't cry because they were going to get her out and send her through the window to NICU before she would probably even have a chance.

However, I heard that sweet sound and had never heard anything better. My baby girl was here where we could take care of her and make her safe ... and she cried!!!!

Ready for Bailey - heading for delivery

2008-10-02T05:30:00.000-07:00

Well .. the time had come. We woke up bright and early (not sure that "woke up" is the right term since there was VERY little sleep that night) and called the Hospital at 5 AM to make sure they were still ready for us. They were on schedule so we headed out to be there by 5:30 AM.

We arrived at the University of Utah Medical Center and they took us right to our room to start prepping me for the C-Section.

Chris got ready in his VERRRY sexy scrubs (and footsies)

And we waited ...
and waited ...
and waited ...
(It took a little longer than planned due to the extra blood testing they had to do to ensure I was safe to have surgery due to my blood thinner, etc.)

FINALLY all of the Doctors had come in to see us, the Anesthesiologists, etc, etc. The only person that hadn't come in was the Neonatologists. They had told us they would visit with us that morning so that we would know they were ready and waiting for our sweet Bailey as soon as she was born. So I asked for them. Boy was I sorry I did that! Dr. Ward (aka "Dr Doom and Gloom" to Chris) came in and told us that we should not plan on the best .. that we should be ready for her to not make it. What a downer that was when we had gone to the Hospital feeling VERY hopeful. However, this Doctor was a Doctor we had never seen before - we still had the hope our others had given us. We were ready to go!

Letter to Bailey 09.30.2008

2008-09-30T08:21:00.000-07:00

My sweet Bailey,

The day is finally almost here that you will join our family "in person". Your big brother, Parker (as well as the rest of your family), is sooooo excited to meet you. He keeps telling me how much he wants you to get here so he can take care of you and "protect you" from your wild brother, Caleb. :) We are all anxiously awaiting your arrival and hoping and praying that you are the fighter that you have appeared to be in all of our ultrasounds. You seem so strong and healthy in them that it is hard to believe that you are really such a sick little girl. We know that what is meant to happen will happen - no matter how hard it may be to accept once the time really comes. But we think we are pretty prepared for whatever may come. We know that, no matter what, you are our sweet little girl and we can't wait to hug you and hold you!

I can tell that you are ready to meet us, too. Mommy is so tired and ready to get you here and I know you are getting tired, too. You are moving around quite a bit less than normal and the Doctor says that is just because you are so worn out and have so much fluid around you. Everyone will be so happy for you to be here - getting our hugs and kisses. We realize that we may not be able to hold you and love you for long. You are fragile, will need special care from your Doctors, you will probably be in casts or a special crib in the Hospital, etc, but we will do all we can to show you how much we love you!

Counting down the days until you are here .. less than 48 hours!

Love always, Your Mommy

We are so loved!

2008-09-26T07:43:00.000-07:00

This isn't really an "update" per se on Bailey and her progress but I still wanted to share with everyone and make sure that Bailey knew just how much she is loved when she reads this in the future.
I just wanted to let all of my friends know how much I appreciate them! I have had a few different groups of people ask us if they could have a baby shower for us and we have continually told people that we would prefer to wait until after Bailey's arrival just because we still have so many "unknowns" regarding what will happen at that time. However, there is an AWESOME group of women from my Church and Neighborhood that planned me a "Pamper Mom and Baby" shower anyway. It was SOOOO much fun to get together and just visit with them. As most of you all know, I am pretty quiet and don't "reach out" to people until I know them very well and having this awesome group of women get together to spend their evening with me - showing their interest and love in our situation and giving me such AMAZING gifts - meant more than I can even express in words. I want you all to know how much it truly meant to me. I have said it before and I will say it again - friendship, a smile, a hug ... those mean way more to me than anything else and you all have been so great at being there for me ... THANK YOU!!!!
In addition to the wonderful "Mom" gifts I got, I also got some things for our sweet little Bailey which, again, meant so much to me. We have not purchased anything for her - as hard as it has been for me - and I am so excited to finally have a few PINK things in my house!
The outfits, the scrapbooks, books, gift cards, nightgown, memory box, dolls, toys, etc, etc, etc (I could go on forEVER) as well as the yummy yummy treats - everything was wonderful! THANK YOU for your friendship .. THANK YOU SO MUCH! Please know how much I appreciate everything - our family is truly blessed and loved! We love you guys!

Updated Birthday

2008-09-23T11:27:00.000-07:00

Just got a call from the Doctor delivering Bailey. She was finally able to get our surgery time changed. We wanted to do this for a couple of reasons: 1) To better manage my blood thinner during surgery and 2) To give Bailey as many full days with the full neonatal weekday team on Staff as possible.
We will now be going to the Hospital at 5:30 AM on Thursday, October 2nd to prepare for a 7:30 AM surgery. As I think I have mentioned before, they anticipate that the C-Section will take much longer than normal as she is going to make a larger incision to give them as much room as possible to take their time getting Bailey out to prevent as many breaks as possible. We know she will have some but the fewer the better! :)

New breaks

2008-09-23T06:34:00.000-07:00

September 22, 2008 - Today I had a "checkup" with my new OBGYN. While there we took a look at Bailey (just because they know I like to check on her - ha ha). We got the CUTEST profile picture of her - her face looks just like her brother, Caleb. ADORABLE! I also got to see her arms and hands close up. It was VERY cool! First time I have been able to see her little fingers so well. (We are normally just focusing on all the measurements, not just "playing around" to see her.)
Just like the last few times, she was practicing her breathing which always makes me so happy to see. And today it was even at a pretty close to normal rate. Of course this is because I can help her so we can't guarantee that means anything when she is born but it is still so refreshing for me to see that she is trying to use those little lungs.
The Doctor did identify numerous "fresh" fractures in her little legs but not too many in the arms. Most of those were older fractures that were still healing. Her ribs, spine, etc continue to look fine. Now if we can just keep them from receiving too many fractures during birth!
8 days and counting .. it's almost Bailey's birthday!

A little more optimistic

2008-09-19T06:24:00.000-07:00

Well this Wednesdays AFI, NST, and Ultrasound was FINALLY a GREAT DAY! Don't get too excited - there were no earth shattering changes, but any good news or improved news is a great day for me! :)
The NST looked fine and the AFI - well - my number went up again which isn't ideal but not a HUGE deal, either. It just means I need to be very, very careful with what I do so that we don't go into labor on our own. That would be a very bad thing with my blood thinner situation.
Then on to the ultrasound ... really nothing looked a whole lot different there. Arms/legs still extremely behind but all organs looking in perfect shape. And for the first time EVER, Bailey co-operated and let us see her spine good (she is normally laying on it so we can just see the sides). It looks awesome and has ZERO breaks as far as we can see! WOO HOO! The other good piece of news? Her thoracic measurement was a BIT better. The Doctor said not to get our hopes up and that she was still going to say it was the same as it has been - no better, no worse - because of the position Bailey was in. However, the number actually came up just a bit better - with her chest capacity being a little under 50% filled this time! ANOTHER GREAT THING!
The best part, however, was more of a feeling. I don't know how to explain it and it probably will sound very weird, but I got to meet with the Doctor that they have switched me to for the delivery. She has done our ultrasound reviews a couple of times so we had met before but now that she is actually doing my delivery, too, we talked about that for awhile. Of course we had to go over all the details about what they will do if Bailey doesn't make it and how it will be handled so we will have at least some time with her, etc, etc but then she went on to say that she really feels that that isn't going to happen. She feels a little more optimistic that they will be able to save her - at least at first - and that is something that has not been said for a very long time by anyone in that office. I also have a much better feeling about things. Maybe it is just wishful thinking, maybe it is hope .. but it is something .. mothers intuition?
As always, thanks for your prayers, thoughts, and words of love!
Less than two weeks and counting ...

What Friends are here?

2008-09-16T13:18:00.000-07:00

We were talking and would LOVE to know who is reading our blog and following our "journey" with us. Please post a comment and let us know and share your blog with us, too!
We have had lots of fun with our Family blog as well as keeping you all posted on Bailey on this one and would love to "keep up" with all of you as well!
Please post and let us know you are here!
Thanks!
The Blakes

Nothing new

2008-09-16T09:53:00.000-07:00

Hi everyone!
I have receieved so many emails and phone calls asking why I haven't updated on the latest Drs appts and I SOOOO apologize. I guess I didn't realize how many people were reading the blog to check on us. :) We REALLY appreciate it!
I have still been going to our numerous Dr appts every week - we just haven't gotten a lot of new news so I didn't feel there was a lot to put on here.
The only real change so far is that the final decision was made to deliver at the University of Utah Medical Center rather than IMC so that we would be close to Primary Childrens Med Center. This will make it much easier to transfer her for care after her birth (I believe we mentioned that in a previous post). When they called to get our C-Section scheduled at the new Hospital they were unable to get the same date/time so we did get pushed back a day. We are currently scheduled for Thursday, October 2nd at 11:30 AM instead of the original October 1st time. This may have to change because they really want me to go as early in the morning as possible due to the need to control my blood thinner medication, but as of right now - this is our scheduled time. We also have a new Dr who is going to perform the delivery. My OB decided to transfer my care to one of the perinatal specialists that we have been working with as well as the delivery. He said he "might" be there but most likely we will just use someone from the MFM office. As you know from earlier posts, we have seen a different perinatal specialist almost every appt. However, there is one Dr that has done the ultrasound review and met with us twice. She is the one that we have really liked the most and, luckily, that is the one that will be working at the U that day - YEA! Dr. Eller will be the one to perform our delivery. We were very happy as we have not been super comfortable with some of the others we have seen.
Well, that is about all we know for now. Next appointment is tomorrow, of course - an ultrasound and an AFI/Non Stress Test. If there is anything new to report we will definately do it!
Thanks, again, for all your kind words, support, and prayers. We love you all!

Marathon Doctor Day

2008-09-07T13:38:00.000-07:00

September 3, 2008 - Well today was a marathon day of Doctors appts. We had our normally scheduled ultrasound to check out Bailey's growth, the weekly AFI/Stress tests, and an appt with the Neonatologists at the University of Utah. Needless to say, we were kept plenty busy this afternoon.

Ultrasound - Really no new news here this week. Bailey's arms and legs are very, very, VERY behind in development. As from the beginning, they have gotten progressively behind so this was not really a suprise. We know that we will have challenges to deal with once she comes but there is so much technology - surgeries, medication, etc - that can be done to help with this. Her thoracic measurements are still the biggest concern here - still at just under the 5th percentile which is what had made her such a high risk and made her chances of life become such an "ify" situation. However, we were very happy to see that her rig cage had grown 2 cm as well as her lung/heart measurement so, although small, they are still at the same percentile - no worse. All of her other organs as well as her spine and skull are still looking perfect. And again - we were so excited - she is still trying to practice her breathing!!! It is VERY slow and labored, but she is trying. Let's hope she does that when she is born.

AFI/Stress Test - My AFI number was still 28 - still a little high but they are just going to continue monitoring weekly. Stress test was perfect - she is still an active little thing!

Neonatologist consultation - This is one of the appointments that we have anxiously been awaiting for a LONG time. We knew it was going to be a tough one but we also knew that it would answer a lot of our questions and, hopefully, help us with some of the "unknown". We met with the Director of the Neonatology Group as well as a "Fellow" from the Group. We were very impressed with their knowledge of OI since most everyone we have talked to so far has known VERY little (if anything) about the disease. They told us exactly what they will do upon Bailey's birth depending on her condition. They explained that they, unlike a lot of Doctors, have to deal with sick and or dying babies on a daily basis. Because of this they understand that Parents would rather know exactly what was going on - good or bad - rather than just be told what the Doctors "think" they want to hear. They were very up front with us and explained that sometimes there is a time to just let go and sometimes there is reason to keep trying and work on the baby. They will help us to make those decisions. We talked about a lot of different options and a lot of different scenarios since we really just do not know what will happen until Bailey comes out and lets us know how she is. All in all, final result ... we felt very comfortable with them and have all the confidence in the World that they will take the best care possible of our little girl when she arrives.

The one change that did come from these appointments, however, is that we will be changing our delivery to The University of Utah Hospital rather than IMC. It was recommended because there is a very high liklihood that Bailey will need surgery immediately after birth. Because of this she was most likley going to be transported to Primary Childrens Medical Center one way or another. Due to her fragile bones it would be a much better situation to transport her just next door than to have to get her in and out of a helicopter, etc to get her to Primarys. I will keep you all posted if the date/time changes due to the change in Hospitals.

Osteogenesis Imperfecta Foundation

2008-09-04T05:00:00.000-07:00

This is the website for the Osteogenesis Imperfecta Foundation. It has been a great resource to us as we have tried to research and learn all we can about OI.

http://www.oif.org/

2nd week of AFI/stress tests

2008-09-02T14:30:00.001-07:00

August 27th, 2008 - Today was the 2nd week of prenatal stress and AFI testing. They started, first, with the AFI. Again - another roller coaster ride during our journey. As soon as they finished the test I was told that there was too much fluid - my number was 28. I had no clue what this meant since the week before they had just basically said "you look good", so I asked. To me, too much fluid didn't seem like a problem. However, the nurse explained to me that 16 - 24 was normal (which means I was actually a little on the high side the week before, as well) and that 28 was too high. When I asked why having too much fluid was a problem she explained that too much or too little indicated a problem with the babys development. She then said that the perinatal specialist that read the results within the next 3 days would be calling me to tell me what steps needed to be taken next. Of course, as I always do when something "new" comes up, I went home to "google" the condition - polyhydramnios. Basically, I found out that this condition usually indicates some sort of birth defect or problem with the growth/development of the baby. We already know our baby has a birth defect so this research didn't overly suprise us. I did not hear from the perinatal specialist so they must not be too concerned. I am sure we will discuss it next appointment.
The "happy note" from this visit ... Bailey was practicing breathing!!! I was so excited. They said that it was actually a little slow but that she was practicing which means that there is lung development and she is trying to use them. This is what they have been so concerned about - that there would be no room for the lungs to develop - so I was so excited when they were able to show this to me. If we can just make sure that she does this after birth and knows how to use them - what a great thing that will be! Keeping our fingers crossed and our prayers coming.

First weekly prenatal testing visit

2008-09-02T14:29:00.000-07:00

August 20th, 2008 - Today was the first time I went in for our first weekly prenatal stress test. I had had to have stress tests when I was pregnant with Parker so I pretty much knew what to expect. However, when I walked in and they started getting ready to do an ultrasound I was a little confused. This is when they explained to me that they were also going to perform an AFI. I had never had this before but they explained to me that it was basically just a way to check the amount of fluid around the baby in four different sections. After finishing this test they told me that my number was a 24 which was good (I had no clue). They then continued on with the stress testing during which they nicknamed Bailey "Wild Woman" because she kept kicking the monitor and knocking it offline so they couldn't get a consistant 20 minute reading. Eventually they succeeded and reported that this, too, looked perfect. Another visit with good news!

Ultrasound - no real changes

2008-09-02T14:28:00.001-07:00

August 11th, 2008 - This was our next scheduled ultrasound with the specialists. Once again we were told that the long bones (arms and legs) were getting further and further behind. Althought we were told in the beginning that there was a good chance that our little one would look "normal", it has become more and more obvious that that will not be the case. She will, obviously, have very shortened arms and legs that may or may not be bowed. They do perform rodding surgeries that can help with this but, most likely, she will be in a wheelchair or need a walker. Again, however, we can deal with these things - just, please, we pray that our little girl will live.

As we talked with the specialist after the ultrasound this time she indicated that she was considering having us do prenatal stress tests and AFI tests twice a week. She was struggling to decide, however, as she said that sometimes they may show something that would indicate problems that may not be "true" problems since Bailey already does have known issues. We made the decision to do the tests once a week to start and then switch to twice a week, if necessary, later. These would start the following week.

Dehydration

2008-09-02T14:27:00.002-07:00

On August 2nd and 3rd, 2008 I was so sick that I couldn't stop throwing up. I was getting sick every single hour for almost 36 hours. On Monday, I finally decided I better call the Doctor. I was worried I was getting dehydrated as I had already been borderline at my previous appointment. The last thing we needed was for me to get severly dehydrated which could lead to premature labor. We needed to keep little Bailey inside growing as long as possible and I can't go in to labor on my own due to the dangers of a C-Section without stopping my blood thinner. It was time to call for help again - man do I hate being a "bother". However, I was told (again) that it is not a bother and that they were very glad I called. They called in a prescription which should help me stop throwing up long enough to get me to the Hospital and told me that I should probably go to labor and delivery that afternoon if I still felt dehydrated. I waited for Chris to get home from work and we headed that way. They ended up giving me 2 bags of fluid to get me started and then made me stay until I could keep down a cup of ice water and a cup of jello. Again, however, reassurance set in as it was the first time we had actually seen the Labor and Delivery area at that Hospital and it was one of the very first times that we told a nurse what our baby was diagnosed with and she had actually heard of the disease. Someone actually knew what it was!!! Feeling better, again, about something - things could look up! As I have always said - everything happens for a reason.

Nonfetal movement worries

2008-09-02T14:27:00.001-07:00

One thing that has always made us feel reassured during this pregnancy was the fact that little Bailey was so active. Our other boys were not so active so being able to see and feel her move so much has made us feel a lot better. However, for a few days we had noticed that the movement had really decreased. I didn't want to be a "bother" but I was really starting to get worried on day 3 so Chris convinced me to call and just ask Cindy what she thought. This was on August 1st, 2008. She said that she wanted me to come in as soon as possible and got me an appointment for that very afternoon. I went in and had an ultrasound and - woo hoo - all was well. Heartbeat is strong and she was squirming and squirming. I guess she had just been sleepy for a few days. FINALLY - a good news appointment!

Ultrasound visit - a BIT better news

2008-09-02T14:26:00.001-07:00

July 21st, 2008 - This was our next ultrasound with the perinatal specialist. Below is a letter I wrote to Bailey just a few days after (on July 24th, 2008) which outlines what we found out during that visit.

Hi my little Bailey.
Mommy (with you in my tummy) is on an airplane right now on my way home from Washington, DC. I havent been able to travel much since I have been pregnant with you because the Drs thought it wouldnt be a good idea for me or you. As a matter of fact, I think this is only the 2nd trip and the first one was right after I found out I was pregnant. Everyone took such good care of me and was so excited to hear that you are almost here. I just couldnt bring up the fact that there is a chance that we may never really get to bring you home from the Hospital. Daddy and I are so hopeful that the Drs are wrong. I know how strong you are. Every time I feel you move inside my tummy I know that you have a will to live. Your oldest brother, Parker, says to me "Mommy, she either has long legs or is just SUPER strong" every time he sees you kick my tummy. Maybe he knows something we dont since all tests, etc show exactly the opposite.
To give a little update on your development ..... We went for our most recent ultrasound on Monday, July 21, 2008. Your long bones (arms and legs) are showing even further behind than last time. They are approximately 7 - 8 weeks behind in development age. This most likely means you have had more breaks but they couldn't tell for sure. Your head is about 2 weeks ahead development size-wise but the skull is solid, there is no fluid, etc, so there is no worry there. Your heart is healthy, your brain is healthy, stomach/kidneys/etc are all healthy. We were able to see tissue development next to your heart so it appears your lungs are starting to develop but there will be no way to know about their functionality until you are born. Your little chest cavity and ribs are still so tiny - only in the 5th percentile - but the specialist we met with this time says that it is still possible for you to have enough room in there to have healthy lungs. She said that at this point it could go either way. A 50/50 chance that we can take you home with us and love you is a million times better than when they told us there was no chance last time we had an ultrasound. That is about all of your development update from this ultrasound.
We love you so much and are all so happy and excited to get you here. You have so many people praying for your safe arrival. We know, however, that our Heavenly Father is the only one who really knows what the plan for you is and we also know that, no matter how much of a challenge, He knows what is best for you. It is so hard for me to wait for you to arrive. I just want to get you here so I can hold you, snuggle you, kiss you, and take care of you. I feel so helpless with you inside where I dont know how you truly are. However, I also know how very important it is that you stay inside my tummy until you have grown bigger and stronger. At least you are somewhat safe in there.
Well, my sweet Bailey, I am going to end for now. I love you so much. Be well.
Mommy

OI Type II - Another Utah Child

2008-09-02T14:25:00.000-07:00

While at Shriners we got the chance to meet a great family with a toddler that has OI. I had corresponded via email with the Mother as I had been searching for others in the area who had gone through what we were going through but had never actually met her in person. While at our meeting at Shriners I had mentioned that I had been talking with this particular family and we were told that they just so happened to be there that day due to a break that their boy had suffered and was there having splinted. We were asked if we would be interested in meeting them and seeing Nathan for ourself. Boy, would we! It was so refreshing to meet this adorable little guy and know that they had been told the same thing - "Your baby won't live" and, yet, here he was - living proof that Doctors can be proven wrong.
While we were talking to the family they told us that a local news channel had just done a story on their little one the week before. Below is the link to the story.

http://www.kutv.com/content/news/local/story.aspx?content_id=c3c4c868-f142-4777-9476-2315990431fc

Shriners Hospital

2008-09-02T14:24:00.000-07:00

Once we found out how rare of a disease OI was (approximately 20,000 - 30,000 people in the United States with the varying types - moderate to severe) we began doing our own research. We realized that we were going to have to because there just isn't that many specialists and very few people that know about the disease in our area.
On July 15th, 2008 we had an appointment with the Patient Care Co-ordinator at Shriners Hospital. We were given her name as the person who could best answer our questions about local specialists and programs regarding OI. She was very helpful and provided us with some books, paperwork, and other documentation - some that we had already found and others that were very good new information. She was also very helpful in telling us what services were available at Shriners for us and how to apply for them. Unfortunately, however, we felt that until we knew that we could get our little one here and keep her alive, we may not need the services provided there.
We would continue to do our own research until that time.

Letter to Bailey - July 14th, 2008

2008-09-02T14:15:00.000-07:00

July 14. 2008

My sweet little Bailey –
I have been thinking for some time about putting together a journal or some letters to you explaining the roller coaster ride we have had awaiting your arrival. However, I just haven’t seemed to get around to doing it. Well, I have decided that today is the day to start. I am going to begin by bringing the story up to this point so far and then will try to keep it updated from this point on as we learn more information. I have also kept some cards, well-wishing emails, etc that people have sent in response to hearing about your situation.
Bailey – we have wanted you to join our family for so long. Mommy has had a hard time getting babies here and we were so happy when we found out that we were pregnant with you. Your oldest brother, Parker, is so excited to meet you and is even ok with you being a GIRL! However, at this time in our pregnancy, we are constantly wondering just how long he will get to have you here on earth to love, hold, and take care of.
From the very beginning of the pregnancy, Mommy has had some health problems. I was diagnosed with blood clots in my legs and had to be put on some blood thinner shots to make sure that we were both safe throughout the pregnancy. I also have had very, very bad anemia (low iron) which has made me feel very, very sick and very, very tired much of the time. However, I have done everything I can to make sure that you were safe and would get here healthy. Everything with you was looking great – you were healthy and strong and growing to be our beautiful little baby. At 20 weeks (May 19th, 2008) we were FINALLY scheduled to have our first ultrasound to find out if you were a boy or a girl. Daddy and Parker were SO sure you were a boy that when they said “It’s DEFINITELY a girl” I think your Daddy went into shock. We went through the entire ultrasound, got some pictures, and excitedly ran to go show everyone that our wonderful baby GIRL was on her way!
It was after this that the roller coaster ride began.
A week later, Mommy got a phone call from her Dr’s nurse, Cindy. Cindy was calling to tell me that there was a problem with the length of your arms and legs and that she had scheduled me for a more in-depth ultrasound with some specialists to see why your arms and legs were so much further behind in growth than the rest of your body. She indicated that it looked like some sort of dwarfism but that everything else looked normal. We had to wait an entire week to get into the specialists and it was a very long wait.
On May 28th, 2008 we went in to the IMC Maternal Fetal Medicine dept to have them take a look and help us decide what might be causing the strange results on the first ultrasound. We were there over 4 hours between the 2 hour ultrasound and a conference with the geneticist there. They explained that you had numerous (over 20) fractures in your “long bones” (arms and legs) which was causing some bowing and some slowness in growth because they were trying to heal over and over again. We were told that this is normally a sign of Osteogenesis Imperfecta (aka “Brittle Bone Disease”). They gave us a lot of information on the disease and told use what to expect once you arrived. However, they told us that while the disease can be fatal for unborn babies, you looked healthy and strong in every other way except for your poor little broken arms and legs. We decided that as sad as it made us that you were going to have to have this pain, we could deal with that if it meant you were here for us to love and hold. We were very upset for a day or two but were able to find the strength to get through it knowing that we would have the help we needed to help take care of you and make sure you were safe once you arrived.
Then came our next ultrasound on June 25th, 2008. At this ultrasound we were given the news that your thoracic measurement was only at 5 – 10% of normal growth. This devastated us. We had been told just 4 weeks before that your thoracic measurements were perfect and that there was less than a 10% chance that that would change. We had also been told that that was the only thing that could change your prognosis to a fatal prognosis. What did this mean now? It meant that we were told that you would most likely live only 48 hours or less after you were born. Of course we were so very sad. We couldn’t believe that things could change that quickly. We still don’t. We have done so much research since then and we refuse to give up hope. Yes, we know we must be realistic and know what the possibilities are. However, we are not giving up on you, little Bailey. We know you are strong and can survive. It is so very ironic, but your brother, Parker, who knows nothing about what is going on yet, is constantly telling me “Wow Mom, she either has long legs or is just super strong!” every time he sees you kicking in my tummy. If he only knew what your prognosis was and just how wrong the Doctors seem to think he is.
We are meeting with Shriners Hospital tomorrow to make sure we know all the best things to do when you arrive to give you the best chance of survival. Our next ultrasound check is July 21st, 2008 and I have my OBGYN checking with the Perinatal specialists to see why they changed their prognosis in such a short time. Of course, I will continue to update our story regarding the arrival of our little Bailey. We love you, little girl, and we will see you one day – one way or the other.
Mommy

The roller coaster ride begins

2008-09-02T14:10:00.000-07:00

June 25th, 2008 was our next ultrasound with the perinatal specialists. We walked in excited to see our little girl again and make sure that she didn't have any additional breaks. We had also come up with the standard questions ... Is there anything I can take or eat to help her be stronger? Does she break because I am too rough with her? Does she feel pain with her broken bones?

The same ultrasound was done - checking out the bones, the organs, etc. Her arms and legs were even further behind - about 7 to 8 weeks now - and one of them looked a little "bowed" which they told us was normal due to the way a bone would heal itself from a break. We got our questions answered and then a different Doctor came in to talk to us. His first words? "I am so sorry you are having to endure this fatal pregnancy." Again - devastation. Here we had convinced ourselves how lucky we were because we only had to deal with the "brittle bones" and the problems associated with that. Now he was saying we had a "fatal pregnancy". This is something that we were told only occurred with a Type II OI baby. We had been told that there was a less than 9% chance that there would be that drastic of a change from the previous ultrasound to this one. What was going on? I think that as soon as the words left his mouth he realized that we were unaware. I asked him what he meant and he proceeded to explain to us that her chest cavity was behind in size and that her heart/lungs were taking up just under 50% of the capacity. It was in the 5th percentile of size and anything between 5 - 10% was risky. Anything below 5% was considered fatal. Basically we were being told that our baby was not expected to live longer than 48 hours after birth. I asked if they would take her early or what we would do and was told that we just continued on until her birth, hoping and praying that things would change. So that is where the roller coaster ride began.

The initial diagnosis

2008-09-02T13:59:00.000-07:00

On May 28th, 2008 we finally had our appointment with the perinatal specialists at the Hospital. It had been one of the longest weeks of our life. We had no idea what to expect but went in scared and hoping for the Doctors there to make everything ok.

When we got there we were told that we would be having an ultrasound but it would be a very in-depth ultrasound that would measure every little thing on our baby and examine every organ, etc, etc to give her a total evaluation.

Of course, Chris went in with his usual sense of humor trying to alleviate some of the tension and asked if she was "still a girl". Confirmed - still a girl. :)

They truly did look at EVERYTHING! They looked at every bone, every vertebrae, her heart, her stomach, her kidneys, her ribs, everything. I had never had such a thorough ultrasound - it took almost an hour and a half. The technician was so good about answering questions as she did the ultrasound and showed us what she was seeing. As was indicated on the phone the previous week, we were able to see that her arms and legs were behind in gestational age in comparison with the rest of her body. However, everything else looked great. All of her organs were on schedule, her skull looked great, her ribs and spine were fine - she was just a bit behind with the long bones. Once she finished up the ultrasound one of the Doctors came in. He, again, went through all that we had been shown and told us that the reason her arms and legs were shorter is because they had numerous fractures in them. Each time they break they had to "catch up" their growth. This is where the diagnosis of Osteogenesis Imperfecta (OI) came in. OI is also known as "Brittle Bone Disease" and basically means that the bones are very fragile and can break very, very easily. There are several different types of OI - some very mild and others very severe and even fatal. At this point, we were starting to realize how lucky we were - she was being diagnosed with a very mild type (Type I or possibly Type IV) which meant that she may look completely normal and live a completely normal life other than having to be just a bit more careful as to ensure she didn't "break". When we realized how much worse it could be and that she could have been diagnosed with a more severe type we decided that we could deal with whatever we needed to once she arrived. They scheduled frequent ultrasounds for us and told us that they would continue to monitor her but that the chance that there would be a change for the worse was less than 9%. What a relief!

The phone call

2008-09-02T13:51:00.000-07:00

On May 21st, 2008 I got the phone call. I was working and saw my Dr on caller ID but I was on a conference call on the other phone and figured they would leave a message and I could call back. I figured they were just calling to give me the results from my routine blood tests so it was no big deal. However, when they then called my work phone and my cell phone, as well, I got a little worried. As soon as I finished up with my conference call I listened to the voicemail which simply said to please call as soon as possible. I had been having problems with blood clots and with extremely low iron so, again, I just assumed it was regarding one of these things. I called the office back and was put right through to my Drs assistant. She got right to the point and simply said "We just barely got the results from your ultrasound and there is a problem with the baby." Devastated .. that is the only word I can think of to explain the first feelings I had. She then proceeded to tell me that the long bones (arms and legs) in our baby were approximately 3 - 4 weeks behind in development from everything else. She said that she couldn't say exactly what it was but that, to her, it looked like some sort of dwarfism. She also indicated that, normally, my Dr would call himself but that he was out of town until the following week and she didn't feel like she should wait once she saw the results come across. Because of this, she had gone ahead and scheduled an appointment for me with the perinatal specialists at the Hospital so that she could get me in at the earliest time. Unfortunately, the earliest time was not for another week. A long week of waiting for us to find out what was really wrong with our baby. Again - devastated. And now ... scared. I have always been so proud of how accepting I am - how people are people - it doesn't matter what they look like. However, this was my baby we were talking about and I will not deny - I was upset. I didn't want her to be different. I wanted her to be perfect. I didn't want her to have to go through the challenges of life where people are unaccepting and mean. I didn't want her to have any type of struggles. I was sad .. I was scared .. I was worried. But we would have to wait - until next week.

The 20 week ultrasound

2008-09-02T13:40:00.000-07:00

On May 19, 2008 Chris and I went to our 20 week Ultrasound. As any expectant family, we were SO excited to check and make sure everything was going well with our unborn baby and to FINALLY know FOR SURE if we were adding another boy or a girl to our gang. We had had some "ify" looks when they had to use the ultrasound to help find the heartbeat a couple of times and we were pretty sure we were having another boy. I love my boys, but I have to admit, I sure thought it would be fun to have a cute little girl to dress up and play with. Regardless, however, I would be happy with whatever I got. Chris, on the other hand, was SO sure that it was a boy that when the words "Oh yes - it is DEFINATELY a girl" were uttered, I think he went into shock. He SERIOUSLY didn't talk for the rest of the ultrasound and for an additional 2 hours afterwards. I thought he was mad. However, I figured out later it was really just shock.

(CUTE STORY INSERT HERE: Later that night we were getting ready to go to sleep and Chris says to me "Guess what?" I say "What?" and he says "I am so excited we are having a girl but if you ever tell anyone that I ever said that then I will deny it." Guess I am in trouble for sharing that now with the World, huh? Had to, though, it was so cute.)

Well, we continued the rest of the ultrasound - nothing out of the ordinary was said, we saw her heart, we saw her lungs, we saw all her parts. She moved around, she wiggled, we got pictures - all of the ordinary ultrasound activities. And then we were off to go and tell our boys that they were going to have a baby Sister - what a happy day!

Baby Bailey's Journey - An Introduction

2008-09-02T13:35:00.000-07:00

Many of our friends and family have asked us to create a blog or send some information regarding the journey we have been on as we anticipate the arrival of our baby, Bailey Grace. I have hesitated to do it simply because I didn't know how to start without it being just a big, long rambling entry. However, I have decided that I would do just that. I figure that you can skip the parts you don't want to read. :)

I have kept a journal of sorts by writing letters to our unborn baby girl regarding her situation and the updates from each of her Doctors appointments. I am hoping that some day she will be able to read these and see how much love and support she had from all of her family and friends. I will probably use some of the exerpts from that as I go back and try to "catch up" and get this blog started so please be patient as we get through the beginning - long, rambling posts.