A Year in Review: 2013
Well, 2013 was a big year for our family. As I sit here and reflect on all that we've been through, I thought I'd share some of the highs...and lows with you all.
2013 started off with me being 18 weeks pregnant. The timing was perfect and we were able to find out if "Little F" was a he or she on New Years Eve. When the clock struck 12:00, we took a big bite out of a mystery color filled cupcake for the big reveal.
I traveled frequently with work throughout my pregnancy, which made the time fly by. In March, I had an amazing baby shower filled with family and friends in CT. Many of which I hadn't seen since our wedding in 2011!
For the most part, I had a very easy and uneventful pregnancy. I was
convinced Sienna would come early and I'd have a May baby...but alas, she made us wait an extra 4
days! Our baby girl was born at 11am on June 7th. Instead of my emerald, came my June pearl.
From day one, Sienna has been an easy going and happy baby. Taking care of a newborn came naturally, and I found it much easier than I had expected it to be. Healing from L&D was the tough part! Joe and I relished in our first few weeks at home as a new family of three. There was no indicator that our life was about to change more than we had ever imagined. I haven't shared this next story with too many people.
When Sienna was 10 days old, we got the call from her Pediatrician that said there was an "abnormality" in her newborn blood work. He wanted us to come in and talk. Cue freak out. We went in that day and her Pediatrician explained that one Cystic Fibrosis mutation was picked up on her newborn screen. He did not think she had CF, but wanted us to understand she was a carrier of the gene. He said because she had the one gene, the state required a follow up sweat test to rule out her having the disease. Chances were slim he promised...she would have to have a second, rare mutation to actually be affected. Our appointment for the sweat test was set up for the following week.
We put on brave faces as guests continued to visit. Joe and I said we'd tell everyone about the scare once we were given the "all clear." We kept the news between us. That was one really long week.
The sweat test day came and we took Sienna to Levine's Childrens Hospital in Charlotte. The process was easy and Sienna did great. We were told we would find out the results the next day. I kept saying, "she's gaining weight perfectly...that means she doesn't have it, right?" The nurse calmed our fears and told us more often than not, the sweat test is negative.
The next day, June 26th, I took her to the Pediatrician for a weight check. The nurse told me she hadn't received the fax with her sweat test results yet, but was told she would have it momentarily. It hadn't come by the time we were done getting Sienna weighed, so I packed her back up in her stroller and left. As I got Si in the car and packed up the stroller for the trunk, I heard the nurse yelling for me. She had chased me out to my car as she had just received the results. She asked me to come back in. That was the very moment I knew, just knew, she wasn't just a carrier of Cystic Fibrosis; but that she had it. My perfect baby had a chronic, possibly terminal illness.
Our Pediatrician was on vacation, so a different one delivered the news. I stood in the room in silence with tears in my eyes. I had no questions, no thoughts, only overwhelming pain. I called Joe, who was working from our home that morning, in tears. I couldn't drive home, he had to come to us. We cried together in the car. It was the first time I had ever seen my husband cry in our five years together.
The next few days were a blur. There were few words and A LOT of tears. We shared the news with our parents and siblings. We were overwhelmed by all that had changed in a matter of days. Our world had come crashing down around us and it wasn't fair.
I'm crying now as I type this remembering just how hard those days and weeks were. If a new CF mom is reading this, just know it does get better.
We have come a long way in the six months or so since receiving that diagnosis. I can't say I don't think about Cystic Fibrosis being a part of our life every single day, but it doesn't paralyze us with fear and sadness like it did in the beginning. I've learned SO much since that fateful day. I've read both positive and negative stories of life with CF. I've connected with other moms of CFers to ask questions and talk about struggles. I read studies and articles on the trial therapies and medicines happening right now. I feel informed, but not overwhelmed. I'd be lying if I said I didn't have my bad days. The days were the negative stories jump out a little more than the positive ones. The days when I see a teenager lost his/her battle with CF... which leaves me to wonder if Sienna will have the chance to go to college, get married, and have kids (if she wants any of that). But, I also have my good days. The days full of hope, optimism and fight. These days are more often. So like I said, if you are a new CF mom - it will get better.
After the initial shock wore off, we got back to living life. We took two vacations to Savannah, GA, which you can read about here and here. There were so many great memories from these two trips - including Sienna's first time in a pool and on a ferry.
We visited my grandmother in Florida for the meeting of the "greats" (great-grandma meets great-granddaughter), which you can read about here.
We played and laughed and watched Sienna grow. My easy going and smiley newborn is now a giggly, inquisitive and slightly sassy infant. We love her dearly and can't wait to watch her grow in 2014.
So while 2013 did not turn out how we expected, we got through it with the support of family and friends. I remind myself that things can always be worse. That other families have struggles as well. We will stay optimistic and hopeful in this new year, and continue to fight the CF battle!
2013 started off with me being 18 weeks pregnant. The timing was perfect and we were able to find out if "Little F" was a he or she on New Years Eve. When the clock struck 12:00, we took a big bite out of a mystery color filled cupcake for the big reveal.
.jpg) |
| January 1st, 2013: 12:01am - we are having a girl! |
I traveled frequently with work throughout my pregnancy, which made the time fly by. In March, I had an amazing baby shower filled with family and friends in CT. Many of which I hadn't seen since our wedding in 2011!
 |
| Baby shower |
 |
| 26, 32, and 40 weeks! |
From day one, Sienna has been an easy going and happy baby. Taking care of a newborn came naturally, and I found it much easier than I had expected it to be. Healing from L&D was the tough part! Joe and I relished in our first few weeks at home as a new family of three. There was no indicator that our life was about to change more than we had ever imagined. I haven't shared this next story with too many people.
When Sienna was 10 days old, we got the call from her Pediatrician that said there was an "abnormality" in her newborn blood work. He wanted us to come in and talk. Cue freak out. We went in that day and her Pediatrician explained that one Cystic Fibrosis mutation was picked up on her newborn screen. He did not think she had CF, but wanted us to understand she was a carrier of the gene. He said because she had the one gene, the state required a follow up sweat test to rule out her having the disease. Chances were slim he promised...she would have to have a second, rare mutation to actually be affected. Our appointment for the sweat test was set up for the following week.
We put on brave faces as guests continued to visit. Joe and I said we'd tell everyone about the scare once we were given the "all clear." We kept the news between us. That was one really long week.
The sweat test day came and we took Sienna to Levine's Childrens Hospital in Charlotte. The process was easy and Sienna did great. We were told we would find out the results the next day. I kept saying, "she's gaining weight perfectly...that means she doesn't have it, right?" The nurse calmed our fears and told us more often than not, the sweat test is negative.
The next day, June 26th, I took her to the Pediatrician for a weight check. The nurse told me she hadn't received the fax with her sweat test results yet, but was told she would have it momentarily. It hadn't come by the time we were done getting Sienna weighed, so I packed her back up in her stroller and left. As I got Si in the car and packed up the stroller for the trunk, I heard the nurse yelling for me. She had chased me out to my car as she had just received the results. She asked me to come back in. That was the very moment I knew, just knew, she wasn't just a carrier of Cystic Fibrosis; but that she had it. My perfect baby had a chronic, possibly terminal illness.
Our Pediatrician was on vacation, so a different one delivered the news. I stood in the room in silence with tears in my eyes. I had no questions, no thoughts, only overwhelming pain. I called Joe, who was working from our home that morning, in tears. I couldn't drive home, he had to come to us. We cried together in the car. It was the first time I had ever seen my husband cry in our five years together.
The next few days were a blur. There were few words and A LOT of tears. We shared the news with our parents and siblings. We were overwhelmed by all that had changed in a matter of days. Our world had come crashing down around us and it wasn't fair.
I'm crying now as I type this remembering just how hard those days and weeks were. If a new CF mom is reading this, just know it does get better.
We have come a long way in the six months or so since receiving that diagnosis. I can't say I don't think about Cystic Fibrosis being a part of our life every single day, but it doesn't paralyze us with fear and sadness like it did in the beginning. I've learned SO much since that fateful day. I've read both positive and negative stories of life with CF. I've connected with other moms of CFers to ask questions and talk about struggles. I read studies and articles on the trial therapies and medicines happening right now. I feel informed, but not overwhelmed. I'd be lying if I said I didn't have my bad days. The days were the negative stories jump out a little more than the positive ones. The days when I see a teenager lost his/her battle with CF... which leaves me to wonder if Sienna will have the chance to go to college, get married, and have kids (if she wants any of that). But, I also have my good days. The days full of hope, optimism and fight. These days are more often. So like I said, if you are a new CF mom - it will get better.
After the initial shock wore off, we got back to living life. We took two vacations to Savannah, GA, which you can read about here and here. There were so many great memories from these two trips - including Sienna's first time in a pool and on a ferry.
 |
| Poolside |
We visited my grandmother in Florida for the meeting of the "greats" (great-grandma meets great-granddaughter), which you can read about here.
We played and laughed and watched Sienna grow. My easy going and smiley newborn is now a giggly, inquisitive and slightly sassy infant. We love her dearly and can't wait to watch her grow in 2014.
So while 2013 did not turn out how we expected, we got through it with the support of family and friends. I remind myself that things can always be worse. That other families have struggles as well. We will stay optimistic and hopeful in this new year, and continue to fight the CF battle!
 |
| New Years Day 2014 |
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| We love you to the moon and back! |
Honey, you brought tears to my eyes reading this one. I am so proud of you - you amaze me with all you have done and learned, and the love you show each minute, each day for your beautiful sweet girl. Sienna has the best mommy EVER!! and I have the best daughter EVER......xoxo
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