Friday, January 3, 2014

Prenatal Testing? Thanks, but no thanks!

December 27 marked one year since the doctor first called to tell me Down syndrome was a possibility.  I remember the day pretty clearly.  It was cold and snowy and I was home from work on Christmas vacation.  Originally I had two doctor's appointments scheduled for that day.  A check-up in the morning with Dr. Jones and an ultrasound at UAMS in the afternoon.  Both were cancelled due to the snow so I was snuggled up in my bed taking a nap when the phone rang.  

I was surprised to hear Dr. Jones on the other end but to be honest, I had completely forgotten about the blood work that had been drawn just a few days prior.  The news that my quad screening came back 1:163 was the last thing I expected to hear.  

The next several months were a whirlwind of emotions.  I never officially received a prenatal diagnosis and many times since Claire's birth I was angered at that.  But in November when my dear friend Bethany asked me to write a blog post for her Thankful Project I reflected on the time since Claire's birth and her diagnosis and realized I was no longer angry.  I was actually thankful that I didn't know. 

Today with easier and less invasive prenatal opportunities I want to share my experience and why I'm personally thankful that I did not have a prenatal diagnosis.   Read my post here: Daily Dose of Gratitude Blog Post 

Wednesday, October 9, 2013

Four Months in Holland

Four (nearly five!) months ago when we first received the Down syndrome diagnosis I was scared and unsure of what the future would hold.  I knew immediately I loved my little 6 lb 11 oz baby burrito but I was scared.  The first several weeks I cried a lot.  Not because I wanted Claire to be different but because I wanted society to be different.  Of course my greatest concern was her immediate physical health, especially potential heart problems.  Once we knew she was healthy (thank you, God!!), my biggest fear was how the world would treat her.  Will she be laughed at?  Will she be excluded from birthday parties and sleepovers?  Will I watch her heart break in a million pieces because she’s left out?  I cried.  My other fear was about her long-term future.  What happens when Blake and I are gone?  Who will care for my baby?  I cried more.  These were lots of heavy emotions, especially for a new mom.  The more I cried, the more I held my little girl.  Countless tears fell on her sweet little cheek in the beginning. 

Days turned into weeks and weeks into months.  Four amazing months filled with love, laughter and sleepless nights. At 7 weeks Claire started school and therapy at Miracle Kids; at about 10 weeks she started smiling at us; at 12 weeks she started cooing and at 13 weeks she rolled over for the first time.   Lots of sweet little firsts for my little girl.  

Her dad and the boys call her Claire Bear and I have nicknamed her Little Bit.  Without a doubt her favorite  hobby is eating J  She has more than doubled her weight and grown over 5 inches!  My little bit is not so little anymore.  She loves bath time and we take one together every night.  Definitely one of my favorite parts of the evening.  She watches me so intently as I sing to her.  I think she will be a water baby and I can’t wait for next summer to get her to the pool. 

Have I mentioned that she LOVES to eat?  She quickly outgrew her cute little newborn clothes and is now in 3-6 month.  But not for long.  When her legs are stretched out they are at the end of her little sleepers.  

I still don’t know what the future holds.  I know she may be teased, but what kid isn’t.  She might not go to every party or sleepover but neither will Austin.  What I do know is the tears of fear and worry have been replaced with grins and giggles.  We love our little bit to pieces and so will everyone who meets her.  I have no doubt.  I mean look at this smile, what’s not to love???                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          


Wednesday, June 5, 2013

Welcome to Holland: Endless Possibilities

Without realizing it, the Cannon family landed in Holland.  Read this uplifting and inspirational poem, Welcome to Holland, about Holland.  I wouldn’t say I’ve settled in to the fact that Holland is my final destination but I have met some wonderful people, seen some amazing sights and am getting use to the idea that Holland, while unexpected, is a great place to be.  

The outpouring of support from people like us in our local area has been amazing! My nurse in the hospital, Brandy, was so encouraging and amazing.  Her little girl is amazing and is defying all the odds of Down syndrome.  Brandy reminded me that the only limitations Claire would have are those we placed on her.  I tell Austin all the time, you can do anything if you work hard!  This will be equally applicable to Claire.  We will set high expectations and do all we can to ensure Claire reaches her full potential!  This summer Blake and I hope to meet with Brandy and her family and make what I expect will be a lifelong connection. 

I have continued to meet and be introduced to other moms who are traveling around Holland like we are. Shannon, Karen, Jennifer and all the moms from the Arkansas Down Syndrome Association.  One thing I know without a doubt is we are not alone.  Claire is not alone.  This road may be new to us but it has been well traveled by others before us.  We are not pioneers who just discovered this journey.  We are following in the footsteps of some truly remarkable people and I look forward to learning from their experiences.  

Since I’ve been to Italy before, I knew what to expect.  One thing I have realized is Italy and Holland may be very different but there are also several similarities.  First, sleep is hard to come by, especially more than 4 hour stretches. Second, there is a language barrier.  Wha, whaaaaa, wha.  Regardless of the language, it’s not English and new moms can only translate the best they can.  Clean diaper? Food? Ah, you just want to be held? Third, you can spoil an infant.  Do not believe otherwise.  Not saying that spoiling them is a bad thing but it is definitely possible.  As I type this, I have a 2 week old sleeping on my chest because she doesn’t like to sleep alone.  But I enjoy being able to give her a hug and kiss her little head in between sentences.  It’s a win/win.  And fourth, you can’t do it alone.  On whichever journey you find yourself, a baby is a baby and needs love and support from lots of friends, family, brothers, sisters, aunts, uncles, grandparents and a good church home.  We are so fortunate to have all of those!

 So to all of our friends and family, welcome to Holland! 

Claire's Journey: The Beginning

When people find  out that Claire was born with Down syndrome the first question I get asked is "did you know?"  I usually tell people that we had an idea.  That part of the pregnancy was definitely a roller coaster ride of emotions.  In December Dr. Jones called to let me know my blood work came back with an increased risk for Down syndrome.  Our odds would normally be 1:700 but mine were 1:167,  This of course freaked me out and I cried and worried and went straight to Dr. Google which only made me cry and worry more.  Being a statistician, Blake was much more reasonable.  Those are still really amazing odds that our baby would not have DS.  I spent that one day sad and upset and then I moved on.  Either way we were going to love this baby.  We already had plans to go to UAMS for our 20 week ultrasound because Austin was born with two fused toes.  Nothing major but it was enough that Dr. Jones wanted us to have a more in depth ultrasound.    The blood work was just another minor reason we wanted a more detailed ultrasound.  

The first level 2 was scary!  We found out we were having a girl but we also found out she could have a hole in her heart.  A VSD but it would likely heal on it's own.  However this is something we would check again in 6 weeks.  I was worried all over again but not about DS.  I was worried about this little girl having a hole in her heart.  At this point I actually let the fear of DS leave my mind completely.  When we went back in 6 weeks the hole was not there but, we found out, neither was her nasal bone.  I knew from my previous research this was a marker for DS.  The doctor confirmed that it was a moderate marker but since that was our only marker it was unlikely she would have it.  He wanted to check her again in 8 weeks to see if the nasal bone was there and they had just missed it.  I cried again and worried and researched and tried to figure out what this would mean for the little person growing inside of me.  If she didn't have down syndrome, she was still missing a nasal bone.  What would this mean?  Would she have breathing problems? Require surgery? Or would she just have a cute little button nose and have trouble finding sunglasses that fit?  There were so many unknowns and I didn't know where to go.  So I prayed.  To me it didn't feel right to pray that Claire didn't have Down syndrome.  I was afraid that if I prayed she didn't have DS and she was born with it that it would seem like she wasn't an answered prayer or wasn't what I had asked for.  This may sound dumb but they were my feelings and my prayers.  So I prayed that she would be healthy.  I could live with Down syndrome but I prayed she would be born physically healthy. 

Those next 8 weeks were maybe the longest of the pregnancy.  I used that time to get myself use to the idea that she might be born with Down syndrome.  When friends asked me about her or the pregnancy I would offer up "and she might have down syndrome."  Most people responded as anyone would, no she will be fine.  But for me it was important to practice saying those words.  I felt like the more I got myself adjusted to the idea, the easier it would be if it happened.  I also knew that the more people I told, the more support I would have when I delivered.  I think deep inside part of me knew.  Our last level 2 ultrasound should have been very comforting.  We actually got the news we hoped for...there were no other markers showing up, her growth was right on track and she was actually measuring a little big.  She kept her face hid and would not show us her nose but the doctors felt confident that she was a typical little baby.  If she had any abnormalities, something would be showing up on this ultrasound.  They told us not to worry.  Blake left that appointment more uplifted and at ease.  I left more worried.  I felt like the doctor's were trying not to upset me and that worried me even more.  

As delivery day approached I was nervous.  I don't think I was afraid of the outcome but I was worried about how I was going to react initially.  I had read enough blogs to know that I might grieve and I might cry and I might be upset.  Because of this I didn't want anyone at the hospital except Blake when I delivered.  If I wanted to grieve, I wanted to do it in the privacy of my hospital room without anyone to judge me.  Not that my family would have judged but I would have felt guilty for grieving and I didn't want that.  I also made Blake promise me that he would tell me immediately. Patience is not my strong suit and I didn't want to wait until a couple hours after recovery to have a pediatrician come to my room and confirm what I suspected.  I wanted to know.  I expected it, I was prepared and I wanted to know.  

As soon as she was born I waited to hear how she was.  I'll never forget how I felt hearing that first little cry!  It was so special and loud and cute.  She was here and she let us all know it.  Dr Nelson took her over to the corner and started his evaluation and Blake assured me she was beautiful!  I couldn't wait until I could see her and count fingers and toes.  I waited a couple minutes and then I started asking how she was, if her nose was ok and if she had Down syndrome.  The first thing I remember hearing Dr. Nelson say is she needs to see genetics.  Again, this wasn't sufficient information for my Type A personality.  I needed more.  So I asked in his opinion, did she have DS and he said yes, she has several of the physical characteristics and she needs to see genetics.  I wasn't sad.  I wasn't depressed.  I was ok with the information.  As Dr. Jones and his team proceeded to stitch me up, Dr. Nelson explained why he thought Claire might have Down syndrome and what our next few steps would be.  Maybe ignorance is bliss but knowledge is empowering. And at that point the most important thing I knew was that my baby girl was healthy.  God had answered my prayers and she was healthy.  She wasn't being airlifted to Children's hospital.  She wasn't   even being taken to the NICU.  She was being taken to our hospital room where she would wait patiently for me.  She was healthy.  She was breathing without any problems, her APGAR scores were 8 and 9, her coloring was good and she had 10 little fingers and 10 little toes.  She was perfect.  The answer to our prayers.  We waited 3 years for this little miracle and God picked an angel for us!  There is a lot we still need to figure out but we have time for that.  Right now I'm going to go count little fingers and little toes.  Again.

Sunday, May 12, 2013

Craft Projects

Again, thank you Pinterest and Etsy for inspiring a couple of the craft projects in baby Claire's nursery!! Seriously, what did people do BP (before Pinterest??) :)

I couldn't find a bedding set that was exactly what I was looking for so I opted for neutral bedding and mix matched fabrics and prints. My dear friend Veronica surprised us with custom nursery accessories and I'm so excited to get them in the room.

The fabric covered canvas was an easy project but I love the way it looks above the changing table. I have to give a shout out to Holly for helping me pick out the fabric. Without her keen eye, I would not have been brave enough to mix and match the bold prints but I do LOVE how it all came together.

 The peacock painting is probably my favorite! I should be ashamed to admit that it's a complete copycat of a wonderful print my bestie Marion purchased off etsy. But I'm not.

Original from Etsy
My copycat
The curtains I tried to make were a disaster. I should have learned in 8th grade home ec that I should never, ever come near a sewing machine. I'm sorry, Mrs Haney. I've now learned my lesson. But not before I attempted to make curtains. Fortunately for me, I have a great friend who bailed me out and made (or is making) real curtains for little Claire! This same friend, the amazing Kim Whitten, made basket liners for me too. Thank you Kim!!

 Lastly, is the crate bookshelf my hubs made for the nursery. He did yet another amazing job implementing my Pinterest project. As I'm writing this blog I'm realizing that the only real part I played in many of my projects was finding them, lol. I completely rely on others to execute them. Hmm. I promise to ponder what that says about me. Later.

DIY Farmhouse Table and Chairs

The table project isn't exactly recent but it is one I'm very proud of! And it wasn't even my project :) Thank you to my wonderful husband for making this one happen!!

When we found out in 9 short months our family was growing from 3 to 5, I knew this was the perfect time for a new, large dining room table. Never mind the fact that we didn't have an extra thousand $ (or more!). I'm thrifty so I started looking on the online yard sale sites, Facebook and Craigslist. Nothing was jumping out at me.

Enter Pinterest and the DIY table!! I absolutely fell in live with the farmhouse table idea as it fit in with our casual yet cozy decor. After lots of research and very little begging, Blake agreed to make me a table. He used cheapo wood from Home Depot and lots and lots and lots of manual labor to sand it smooth but the finished product is exactly what I wanted!!

The chairs were a lucky find from Craigslist. We kept the 4 chairs from our existing table and bought 6 more in a similar style. Add some fun fabric and a few staples and poof-our finished dining room!! Couldn't be happier with the finished product and I love that we can have up to 10 people comfortably seated for Christmas breakfast :)  

Not bad for a total budget of about $300!

Sunday, May 5, 2013

9 months in the making

A few days after we took Jonathon into the Cannon family, we had another huge surprise!  What we had prayed and prayed for had been granted to us!  

Yes, this was quite the surprise but a great one!  Now here we are 9 months later and expecting the arrival of little Claire Elise Cannon in the next couple of weeks.

The last few weeks have been busy, busy busy!  With two little boys and a baby on the way, there is a lot to do!  We celebrated Jonathon's 4th birthday by going to the zoo which was a great time for all of us; I took a trip to Washington DC for a conference and a couple days with my bestie, Marion; and we've spent a ton of time getting a nursery ready.  Fortunately, I've been nesting like crazy the last few weeks and feel better than I ever remember.  My freezer is fully stocked, all the cabinets and closets in my house have been cleaned out.  Many of them more than once.  We have a stockpile of all the "essential" groceries we will need like toilet paper, paper plates, laundry detergent, peanut butter and pop-tarts, lol.  Now we wait.  What a great Mother's Day this year will be!  I am blessed!!