One year ago today on July 11, 2011 at 3:44pm we welcomed Sarah Ann Cagle into the world. All 7 pounds 1 ounce, and 19.25 inches. We knew right away that she would change our world forever.
Sarah,
The moment I heard you cry for the first time is a moment I will never forget. Every other sound in the OR seemed to just vanish as I listened to take you first breath and let out your first cry. I knew at that very moment you were special, but I didn't know what God had in store for you.
I will always remember when they brought you to me in my room. You have a little hospital hat and the nurse had made a bow and put it on there. She read my mind as I really wanted to you have a bow on your hat.
We brought you home and we became a family of 5. Brooke couldn't get enough of you. Emma really didn't know what to think of you. Soon we settled into a routine and everything was perfect. But one day at two months old you started to scream out of no where. I thought it was your reflux acting up, but after two days my mommy gut told me it was something else so I took you in to the doctor.
The NP at your dr's office was worried and sent us in to the ER to get you check out. They ran some test and sent us home, but your dr sent us back the next day.
This time you were admitted and you had to stay a whole week. The hospital ran lots of test, but no one could tell us why you were hurting.
We were sent home again and then ended back at the hospital a week later when you were still having these screaming spells. I promise I was trying everything I could to figure out what was happening to you. It just broke my heart to see you in so much pain. Many people including family and friends thought I was crazy for putting you through all of this, but I wasn't going to give up until I knew what was hurting you. This time you were in for another week and you turned 3 months old while you were there. Even though you had an IV in your hand, I did my best to make you make you look pretty even though you felt so bad.
When the week was up we still had no answers as to what was going on. When you were home you were either crying or sleeping most all of the time. I did manage to get you dressed up for you first Halloween even though you had been at the doctors office that morning and we were told you would be admitted to the hospital once again.
This was the first testing that I was really worried about for you. They had to put you under general anesthesia for the first time. This was SO hard on me, but you did just fine.
You did great through all of this testing, but we still couldn't figure out was was the cause of your pain. I am really sorry that you had to go through all the test, but I knew if I kept fighting for you I would get you better.
Just before the holidays I asked to get a sweat test done. A ER doctor had mentioned testing for cystic fibrosis, but it never got done and then every time your daddy or I asked about it, everyone told us that wasn't it and just left it at that. I begged your doctor to do the sweat test. He told us the same thing. That you newborn screening came back normal so it didn't need to be done. I begged for it. He told me if it would make me shut up, then he would do it. I was used to doctors acting like this so it didn't bother me and I figured at least we would know for sure that you didn't have CF.
You had the sweat test and the number came back in the abnormal range so they did some blood work and we then had to just wait. It would be 6-8 weeks before we knew the results of the testing.
You celebrated you first Christmas and we had a blast. The holidays were still hard on you as you were still screaming a lot, but I wasn't going to just sit and wait for test results. So of course back to the doctors office we went.
This is the point that your doctor really started to worry about you a lot more. You were 6 months old and were still wearing 0-3 month clothing. You had stopped gaining weight like a normal baby. I had noticed it for a while, but once again the doctors just thought I was over worrying.
They decided to admit you once again to the hospital. This time we went to another children's hospital. While you were there they had to put you under general anesthesia once again. After a rough first couple of days there, it was the first time the doctors started to get concerned and saw how much pain you were in and really wanted to help you.Through it all you were strong and still showed me some smiles. Those smiles helped get through each day!
Since all you testing came back normal you were once again sent home to wait things out.
Then the first week of February I got a call that your DNA testing was back and on February 9, 2012 we found out that you tested positive for Cystic Fibrosis. You had one known gene and one unknown making your official diagnosis CF Related Metabolic Syndrome. The picture below is you at your first appointment at the CF clinic on February 9th.
We continued on with life as normal as possible. We start you on enzymes. This was to help you absorb your food. The very first bottle you had after taking the first does of enzymes as awesome. For the first time EVER you were satisfied. You also stopped screaming!!!! We realized that you were screaming because your body was starving. The first week on enzymes you gained over a pound!
A month later you were started on CPT and breathing treatments. You would fall asleep to the CPT even thought you really didn't like the breathing treatments you took them like a champ.
On Monday June 18th we found out that you cultured a bug that only people with CF can get, so that changed you diagnosis to officially Cystic Fibrosis. That same day you started using the Vest for you CPT. Most of the time right now you like it, but you do have moments you don't. You still put up with it like a champ.
Sarah you are more that just a kiddo with cystic fibrosis. You are a beautiful baby inside and out. My heart overflows with love for you. I am so proud of everything you have endured and how well you have overcome everything placed before you. I am more than blessed to have you as my daughter. I hope that your future is happy and healthy. I hope that you don't let CF define who you are and you don't let it stop you from doing what you want to do.
Today you are turning 1 year old and you are the sweetest, most beautiful, loving
baby girl. You never cease to amaze me with your courage, persistence
and strength. You have the most beautiful blue eyes and a loving smile. You
love to laugh, you love to smile, and play. You have the
sweetest demeanor and couldn't be happier. You are learning to crawl, absolutely love your sisters and they love you too.
Everyday I thank God for you and that he picked me to be your mom. I can't wait to see what each day brings for you and your life. I know that you are going to make a difference in this world and I can't wait to see God work through you.
We Love You!!!!
Happy 1st Birthday Sarah!!!
