Harper is ONE!

I have tried so many times to write this post. Just the thought of this day has put me in tears for the last few weeks. Today is no different. But I am going to power through. Today was a celebration of the wonder she has brought since her arrival one year ago.

Today at 11:54 am I was out to lunch with co-workers and Harper. Last year at 11:54 am I was in an OR delivering my baby girl. Today my co-workers "oohhed and aaahhed" over how cute and well-behaved Harper was sitting in her high chair. Last year the nurses and doctors (along with Andy and myself) were impressed at how healthy Harper was. Under 5 lbs, heart defect, and over 3 weeks early.

Last year...

The day was a whirlwind and one that I remember every detail of. I was wearing black yoga pants, and a blue and white striped cardigan. My hair was in a low pony tail. Andy was dressed for work and joked with the nurses that he needed to transform into Dr. Clooney. He was trying to soften the mood. I'm pretty sure I told him to "knock the f*&# off!"

We knew the Friday before that we were most likely going to have H early. My OB gave me her personal cell phone number so I could tell her (before anyone else) what the specialists decided. She canceled her appointments for the day to come deliver Harper. Dr. Burns held my hand and wiped my tears away while I was getting the epidural. She didn't have to do that but she loved Harper from the beginning. She was proud of us and was the perfect person to deliver my angel.

Turns out that the whole hospital knew about Harper. They were expecting her in the NICU. They were ready for the baby girl with Down syndrome and a complete AV Canal defect. They were stunned and happy when she was too good for them. News spread fast. I found out this out not too long ago from a few different people. The hospital was proud of Harper without ever meeting her.

What a difference a year makes.

Today...

I took the day off today to spend it with H. Andy is traveling for work so it's just me and my girl. And as Kelle Hampton would say...today was made of unicorns and rainbows. 

Harper slept in an extra hour, started whole milk today, started bringing her sippy cup to her mouth herself, made many more "close to crawling" motions, and actually put some weight on her feet. 

I realize these are milestones that many "normal" one year olds have already mastered. But my Harper is doing things in her own time. And who cares? She is the happiest baby I have every met. She has a fantastic family, great friends, and many other people that love and adore her just the way she is. I wouldn't change her for the world. 

Today she grew in front of my eyes. We sang. We danced (ok I watched Glee 3-D movie too many times this week), and we bonded. 

She has found her voice for months now but, boy oh boy, was it out today. She was so talkative in the mall that 2 ladies had to stop and talk to her. Yep, that cool kid is mine. And she is wonderful. 

Help needed...

Thank you to all who came to Harper's party and thanks for the gifts but I'm asking one more favor. Join Harper's Heartbreakers for the Madison Area Down Syndrome Society Step Up for Down Syndrome Walk on October 13th. If you can't walk...we will take your money too! No seriously, we appreciate every penny and every step you can contribute. Please visit here for more info. 

You all know her story and you know how much paying it forward means to me. We have been welcomed in the Ds community with open arms and enjoyed educating/involving you along the way. Without events like the Step Up for Down Syndrome Walk and fundraiser, my voice wouldn't be able to be so loud. 

Thank you for the love you have shown my family the last year. The comments and emails that I receive from perfect strangers have touched my heart. This year has been amazing (and fast) and we look forward to sharing many more with you. 

Paying it forward...again

I wrote a post in the past that asked myself if I was doing enough to raise awareness about Down syndrome. I want to educate myself, family, friends, and others. But I don't want to cross the line into annoying. I'm sure I've lost a few Facebook friends since posting this blog and explaining that Harper has Down syndrome. I do know that this blog has brought out old friends and many new friends. I hope that I have been able to "teach" others about Ds but I especially hope that I've made you, the readers, look at Down syndrome as a blessing and not a burden.

As difficult as the last 4 1/2 months have been....HARPER IS NOT A BURDEN AND SHE WILL LIVE A QUALITY LIFE. If you are a friend of mine on Facebook then you saw that I posted a link sharing the story of Amelia. Amelia does not have Ds but has Wolf Hircshhorn Syndrome. She needs a kidney Transplant and the Children's Hospital of Philadelphia (CHOP) said she was not eligible because she is mentally retarded. That was the dagger in my heart. That could have been Harper. Even though Harper may be delayed does not mean she shouldn't be treated the same as anyone else. And neither should Amelia. Amelia's story blew up the internet. And I mean blew up. CHOP's Facebook page was filled with messages and a petition is also going around. The story has been featured on the Today show, NBC nightly news, CNN etc. CHOP has issued 3 statements and Amelia's family has  since been contacted by CHOP to come back in and to discuss a family donor transplant. I believe this action at CHOP is not a full representation of the hospital but a few insensitive doctors trying to sweep this under the rug. 

Yes, Amelia's future will be filled with doctor appointments, physical therapy, and many other "extras" but so does a child with a peanut allergy, a learning disability, or behavior problems. Harper's future is unwritten. She gets to write it and yes it will include doctor appointments, physical therapy, sign language etc. But so what? Harper has an extra chromosome and it makes her....her. She will lead a beautiful life and Amelia will as well.

She is newly mesmerized with her hand!

This past week I have witness a blog miracle. One little blog post from Noahsdad.com went viral and Noah and his dad are now making the rounds on all national news outlets. It's amazing. His post: how Target did tons by not saying anything about their model Ryan who has Down syndrome. Seriously, the buzz is amazing. Follow him on Facebook or his blog and you can keep up with the crazy adventure he has been on in the past week. That post could have been any of us. But it doesn't matter. Do I wish it was me? Sure. But his voice is just as good as my voice.

There is still time to donate to Nella's 2 for 2 Fund. You can find the info here. You don't have to donate much. $5 will go a long way. I donated this morning and it was in honor of Harper. You don't know Nella. Hell, I don't even really know Nella but have followed her journey since last May and by gosh I feel like I know Nella. Do it in honor of Harper and all the other kids that have Down syndrome you may know. Every $ will help raise awareness for Down syndrome.

Watch this video! 

As I write this post I realized that I've changed. I've always cared about people but I have morphed into an advocate. When did that happen? Then I remember that the little girl who is asleep in front of me made that happen. Not only am I her advocate but I have the back of all of Harper's designer gene sisters and brothers out there. They need as many voices as possible and I plan on making my voice loud and proud!

This post goes along with my "pay it forward" attitude.  If you are tired of my loud and proud advocate voice then, by all means, feel free to stop following me. I'm not preaching. I'm informing. Love it or leave it.

Home and Paying it Forward

Someone is happy we are home

Yesterday (Tuesday) was out first full day home-it was magical. Andy and I were happy, giddy in fact. We don't fight much but the week leading up to H's surgery neither one of us was happy or that nice to each other. Chalk it up to nerves and always taking it out on the person you love. I woke up yesterday morning to a full pot of coffee and an overwhelming feeling that my family is mine and if this didn't tear us apart nothing will! We always had plans for the future but H's damn surgery was a speed bump.

How is Harper holding up? She is great! I gave her Tylenol twice yesterday for what I think was pain. She never cries or gets fussy so I am chalking that up to pain/discomfort. At the hospital she never really moved besides someone holding her or laying in the bed so I think being home and moving from rocker, bed, arms, boppy, crib is making her a bit more uncomfortable. And yes, I'm not picking up her from under her arms!

If you have read my recent blog posts then you know my goal is to Pay it Forward. I had an incredible amount of support from other Ds and OHS mama's that now it is my turn to help the others who will be walking in my footsteps. I have referred many of you to Kelle Hampton's blog, Enjoying the Small Things. She has a huge blog following and is definitely an inspiration to many, me included. Her life seems so laid back while stylish and normal at the same time. Her daughter Nella has Down syndrome and she turns 2 in a few weeks and Kelle is also trying to pay it forward.  Go to her recent blog post and read it, donate if you can but read it and pass it along. Go to this blog if only for the pictures. I promise you that you will not be able to read only one post. It's captivating. Not only will it hopefully raise money for Nella's fund but it will also create awareness about Down syndrome, the ultimate goal of this blog. 

THANK YOU for being supporters of mine but also for Harper Alice. 

First morning at home in our normal spot. 

Early bedtime with Sophie the Giraffe and Lola "protecting" us.

Our little angel is home, healthy, and happy. 

Day 5 Post Op

I am writing this as I sit at home with my family. I'm in pjs on the couch and I can see everyone I love.....Andy, Brewer (doggie), Lola (kitty cat), and Harper. I'm a happy mama. Harper's heart is fixed and my heart is content. Now I get to be a regular mom and worry about normal stuff. Like when to start cereal, jar food, and boys (actually Andy can worry about boys).

Today was great. Harper slept the entire night at the hospital. The nurse let her and so did I! Early this morning the doctor's did rounds and were so impressed with little Miss H. As soon as the Echo was done we could go home. Well the Echo showed a minor leak and I have been reassured by many doctors that this is normal and that with age and time it will diminish. After all, she did just have OHS and the heart needs time to remodel itself. Strangely enough, the leak diminished while she was eating....odd but I'll take it. The solution is to keep her on Enalapril and keep checking on it every month. Not a big deal.

We were home by 1:45 and it was blissful.

I'm glad this process is over and behind us. We did good. Real good. Harper was...well amazing. She barely fussed the entire time and just went with the flow. Proving that she is indeed the Best Baby Ever.

Now it's my turn to pay it forward. Not only repaying you all for the numerous prayers that were sent her way but to help other mama's prepare for their little darlings Heart Day. I have officially joined the OHS Mama Survival Club. While it's scary on the outside it's blissful on the inside.

If you've made it here because you are a mama with a baby who will need OHS and/or has Ds, send me an email. I have lots of advice and it's my turn to pay it forward.

Never again will her name be seen in the PICU 

 Lunch from Ronald McDonald House...super sweet

He's exhausted but happy to see us

Home Sweet Home...with Sophie the Giraffe