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.
4 years ago