Tuesday, September 30, 2008

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

Friday, September 26, 2008

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!

Tuesday, September 23, 2008

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!

Friday, September 19, 2008

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 ...

Tuesday, September 16, 2008

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!
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!

Sunday, September 7, 2008

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.

Thursday, September 4, 2008

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.


Tuesday, September 2, 2008

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.


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.

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.


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.

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.