Bailey's present

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

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

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

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

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

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!

Letter to Bailey 09.30.2008

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!

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.