Poem

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"

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

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

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

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

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

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"

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

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

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

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!

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

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!