Monday, January 30, 2012

Where has the time gone?

Today, Miss Harper Alice Bohacek, you are 5 months old. You have given your daddy and I five months of pure joy, celebration, worry, but mostly love.

I can say that we have witnessed and you have survived a medical miracle. Any doctor who is able to repair the holes in my precious baby girls heart is a miracle worker. You not only survived but you are thriving, kicking butt and taking names. 

We have bows!

At 5 months old you are: 

* wearing 3 month clothes
* wearing size 1 diapers
* smiling all the time (except for pictures)
* trying to hold your own bottle
* almost rolling over
* last week you were 9 lbs 14 ounces...I'm sure now you are over 10 lbs
* love to play with the links/rings
* obsessed with your mobile
*going to be at 9 and wake up at 3 for a bottle then sleep again until 6:30-7:00
*drinking 2-5 1/2 ounces a feeding

You always wake up with a smile on your face. Either from a 30 minute cat nap or a 6 hour night time sleep you wake up one happy baby. 

You have lots of friends already!

Sully seems pretty smitten

You have Emersyn wrapped around your finger

You are a cougar

You may be little but you are acting like a big girl. 

Exersaucer is eating you up!

My goal for you and for myself is to help show other mommy's and daddy's that Down syndrome is not  a death sentence. If you are reading this and your child has recently been diagnosed with Ds-WELCOME and feel free to send me an email. I hope you are out there and reading our happy journey.

Our family is happy (except when the dog is chasing the cat and mommy is chasing the dog and daddy is sitting on the couch laughing) and normal. You are happy and normal. And that's the way we will raise you. 

You are special but not only because you have an extra chromosome that gives you designer genes-but because you are Harper Alice-a beautiful bouncing baby girl.

Sunday, January 29, 2012



a token; indication.
any objectaction, event, pattern, etc., that conveys meaning.
a conventional or arbitrary mark, figure, or symbol used asan abbreviation for the word or words it represents.
a motion or gesture used to express or convey an idea,command, decisionetc.: Her nod was a sign that it was time toleave.
a notice, bearing a namedirection, warning, oradvertisement, that is displayed or posted for public view: atraffic sign; a store sign.

I bolded the second meaning of "sign" or in some cases an "omen." The world "omen" to me is creepier than the word "sign" so I believe in signs (less creepy). To be honest, I have been meaning to write this post for awhile but I kept forgetting but a sign keeps popping up to remind me. 

A cardinal. Yep, a bird. For those of you who know mean (really know me) I am terrified of birds. It comes from multiple occassions of birds chasing me. And a few pooping incidents as well. Thank you pigeons in Milan, Italy for welcoming me to your country. 

Back to my point, about a week before Harper's surgery I was having serious doubt and anxiety that the surgery wasn't going to be as planned. I feared something bad was going to happen and I wouldn't see my daughter again. Then I saw a red cardinal outside my kitchen door. "Pretty," I thought and kept moving into the bedroom to get ready for the day. There it was again. Hmm, it's following me. Now this cardinal was easy to spot. A bright red bird against naked trees is sure to stand out. I then realized that this bird signified something and I, of course, went to Google. 

The symbolic meaning of cardinals deals with vibrancy and brilliance.
As we observe the cardinal – particularly against the backdrop of the stark winter months, we are reminded that even when things appear bleak or isolated, there is always the presence of beauty, hope, and love.

(taken from here)

I felt a sense of relief after reading that meaning. My mood shifted and I was, once again, focused on the positive. Then, the day before H's surgery, her and I had to go to the hospital for pre-op appointments. I was a mess. I cried the entire car ride to the hospital. Until I saw this...
I tried pointing at the license plate but my finger is way off. If you can't read it, it says: JC LVZ U.
Translation: Jesus Christ Loves You. 
JC and I haven't been the best of buds in a long time so this plate was a sign that I was taking myself, and Harper, in the right direction. 
Go ahead, call me crazy. I'm sure many of you don't believe in signs, omens, premonitions, or anything else in that nature. But I do and these signs, as silly as it sounds, helped me realize that Harper would have a successful surgery. Maybe I was grasping at anything that I could. I do know that Mr. Cardinal has made numerous appearances in my yard since we have been home from the hospital as if he is there to reassure me that he does know what he is talking about. 
I don't need a sign to tell me that my 5 month old (gasp...tomorrow) is growing up! I just have to look at her!!

It's Sunday night and Andy is cooking Brisket (yum-o) and Harper and I go back to school/work on Wednesday so I'm going to soak up every minute with my little H!

Thursday, January 26, 2012

Playdate, doctor, shingles?

I'm making the most of my last full week with Harper before I go back to work and she goes back to school. Playdates, doctor appointment, photo shoot, crafting, shingles, and hanging out with mom. New shingles for the house? Nope...that mama has shingles (more info to come).

Harper had a fun play date with Sully on Monday. Sully is: older, wiser, a professional walker, good at sharing his thumbs, and an expert at eating Cheerios.

See? Expert at sharing thumbs

Boyfriend material

Harper had a scheduled post op with her pediatrician on Tuesday. Basically just to make sure she was gaining weight, no murmur, and just overall cute. She passed with flying colors and now weighs 9 lbs 14 ounces! Don't bother doing the math, I did it for you....that's an ounce a day since discharge! Holy moly girlfriend is growing.   

Before I know it she will be going to prom, talking to boys on the phone, and having sleepovers. I've joined many Ds Facebook pages lately and am so excited to be "meeting" parents with older children who have Down syndrome. I smile when I see prom pictures, wedding pictures, and graduation pictures. Some day, my dear, your dreams will come true.

If you are my friend on Facebook (if not please send me a request) you know that I have Shingles. Yep, I'm 30 and I have Shingles. I have to give Tara (also Sully's mom) a big SHOUT OUT for diagnosing me---via text message. See, Tara is a rash professional. I should have showed her on Monday but seriously my rash wasn't really bothersome then. For the record, it's on my upper back. I also have been feeling really achy and sick lately but not nauseous (nor pregnant get your mind out of the gutter). I attributed it to not sleeping well and being stressed out for the past month 4 months. 

Long story short...I texted Tara, she texted back that I needed to Google Shingles. I did. Called the dr. and made sure to say that H had OHS so I could get an appt ASAP. In at 3 out at 3:30 and had numerous nurses stop in to see the 30 year old with the 65 year olds disease.

It's painful, annoying, and really I have better things to worry about but it is my body telling me to ease up so ease up I must. I have nothing scheduled until work next Wednesday (c'mon Mary have that baby!)

If you were paying attention I mentioned a photo shoot above. I will have more info about a fantastic organization called Inspiration Through Art later. But for now, I am going to make you wait!

Enjoy your day and wash your hands!

No smiling allowed when modeling

Sunday, January 22, 2012

Moving forward....and sideways

Wednesday, January 4th at 5:00 pm I realized that hubby and I could move forward....with a healthy Harper. Yes, she was just out of surgery and we had no idea what her recovery would be like or when we would even be able to leave the hospital BUT...I felt the momentum to move forward. 

Being loved on my Emersyn and Weston

Our daughter, all 9 lbs and 4 ounces of her (at the time), was healed. No more will I stare at her chest watching her heart beat super fast and wonder. Wonder when she would start turning blue or wonder what if. The planning stage had begun. The night of her surgery Andy and I stayed in her room with her and talked about our future. We had always talked about our future with Harper but now it was really going to happen. First birthday party ideas, change the office to a playroom, sell our house, buy a new house. These are the plans. Will we stray off? I bet. As long as Harper, Andy, Brewer, and even Lola are by my side....then I'm ok with that. 

Harper is moving sideways. Or trying to ROLL! Yep, that's right, she is almost rolling over. Silly girl still isn't holding her own head up 100% but she has decided that it will be easier to roll over! She hasn't done a complete roll....yet. I fear I'll leave the room for a second to find her on her belly! I don't want to miss it but I know that she is moving forward with us... by starting off sideways.

She just has to move that arm and she will be a rolling!

Most of the steri-strips are off!

Big girl in the exersaucer

Thursday, January 19, 2012

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 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.

Tuesday, January 17, 2012

Surgery Update

I worked on a completely different post last night to publish today. That post is on the back burner because I have BREAKING NEWS!! BREAKING NEWS! 

Today was the one week post op appointment with the surgeon and he said, "I don't have to see you again."

Yes you read that correctly. Harper doesn't have to see her surgeon (who we love and adore) ever again.

Cue the happy squeal from this mama and the overwhelming urge to cry. I was able to blink back the tears until we got into the car.

We will still have follow up appointments with the pediatric cardiologists (again we love and adore her) but those are monitoring visits and will start to be few and far between.

I can't stop smiling. Meanwhile, Harper must be exhausted from showing off to the surgery team because she is in the middle of a long nap. But I'm still smiling and I have a little extra skip in my step!

Again, THANK YOU for the amazing online support and love. Part of Harper's success has been because of you. We felt the love, therefore, she felt it too!

Friday, January 13, 2012

Why I Love Target

This post may not come as a surprise to most of you. But I love LOVE Target. Here are the 10 reasons:

1. The dollar section
2. We have a Super Target by my house so one stop shopping!
3. The prices are reasonable.
4. Nothing looks cheap.
5. Shoes
6. Clothes (esp maternity)
7. Home goods
8. Baby stuff
9. Shoes (repeat?!)
10. A recent ad with a little boy who has Down syndrome.

What? You didn't see it? Here it is:

target ad down syndrome model kid child

Isn't he cute? His name is Ryan and he is pretty awesome if you ask me not only because he rocks designer genes but he is super cute! If you heard about it it's because of the Down syndrome community not because of Target. Why do you ask? Target did the greatest thing in support of Down syndrome. They didn't say anything. No press release. No commercial. Just a normal ad with normal kids. The kicker? Nordstrom's did the say thing a few months ago and no one detected it. Guess who was the model? Ryan! 

I see our goal of awareness and acceptance growing with ads like this. I guarantee that most of you actually had this ad at home, looked at him, and didn't even notice Ryan. Why? Hopefully it' because it doesn't matter. Will this ad make me shop at Target more? Hell yeah....but that isn't that difficult due to the fact I am probably the most frequent shopper at my local ST. 

I'm Down with Target! Are you? 

Speaking of models-have you seen Harper's model face? She takes modeling for mama very seriously. She is very professional. 

I've had many emails/posts wondering where these outfits are from. Sorry but the tank top/dress is from Paris. Nope not kidding. My kick ass cousin was in Paris last summer and snatch up a few wonderful items for Miss H. The flower and headband are from a craft fair and the pink polo dress I think is Old Navy. Pictures were taken with Instagram. Follow me: I'm kbohacek. We took them the day before the snow came. It felt like spring and H and I lived it up. 

Actually a spring/summer dress with a cardigan belted on. Maybe it was the fact that we spent 5 days locked in a hospital but our inner diva's came out and we had a mini fashion show. 

Have a fabulous weekend and remember to shop at Target! I know I will be!!


Wednesday, January 11, 2012

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. 

Monday, January 9, 2012

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

Sunday, January 8, 2012

Day 3 and 4 Post Op

Day 3 was Saturday. Man that took me 15 seconds to determine if yesterday was Saturday or not! Time slows down when you are in a hospital.

Day 3 was pretty uneventful. Harper did get her hi-flow oxygen reduced and eventually taken out. She also ripped an IV out of her hand! Besides that it was pretty uneventful. We found out that her heart rate would spike when eating. Dr. A wasn't too worried about it because she only does it when she eats! Girlfriend is excited for her bottle! And then her heart rate would dip low while she slept, making for a happy sleeping baby. Her lung improved a lot by lots of coughing, crying (sadface), and the awesome respitory therapists that helped H get the gunk out.

I was so tired from the night before that I passed out on the couch at 8:30 and made it to the sleep room by 10. The sleep room is the best thing this hospital could have done for parents in the PICU.

Speaking of parents in the PICU. There are none. There are at least 15 rooms on the floor and I have seen 3 other rooms with parents in them. Isn't that weird? Or are we weird for both of us staying over every single night? I feel guilty leaving her to go to the cafeteria.

Day 4 was great. I came in to find H without oxygen and in real clothes! Harper got her pacer wires out early in the morning and they taught me how to take care of the incision site. She pulled out another IV last night and sometime today ripped her blood pressure cuff. Her nurses just laugh at her! She really is melting hearts over here. Her favorite nurse, Ashton, has been with us for 2 full days and her and H are attached. I even cried saying goodbye to her.

If all goes well tonight and the Echo goes well tomorrow then all the doctors have to do is sign our discharge papers and we our outta here! It's been an emotional 5 days (ok 7 months) and I am grateful for the care we have received but the only time I want to step foot in this place is for follow ups!

Below are lots of pics!

Friday, January 6, 2012

Post Op Day 2

We have been at AFCH for 3 days but today H is post of day 2 and doing......great! She gave me a little bit of a panic attack last night when I noticed her breathing was funny. I told the nurse who listened to her lungs and realized that something was off. An x-ray was ordered and low and behold she had a minor (very minor) part of her left lung collapsed but with a lot of fluid or wetness. The solution: to put her on hi-flow oxygen to help inflate that part of her lung and to get her to cough or cry. Or basically to make mama cry. I know that the crying and coughing is key in getting the yucky stuff out of her lung but it makes me sad that I can't help her because I make things worse. 

I went to bed (in the sleep room) knowing that H was in good care with her nurse Lindsay and daddy in the room. This morning she is doing just fine and has definitely won the hearts of all the nurses and doctors on the floor. Morning rounds are our favorite time because I get to hear how great she is doing and how much they like love her. 

Yesterday they were able to take her catheter out and they took her breathing tube out. Making H a happy happy camper! 

We even got to hold the little peanut and started her on pedialyte last night and formula this morning. Both of which she is excited to have back in her life. Girlfriend is chugging the formula like there is no tomorrow. Forget asking her to stop and cough in-between. She won't have it!

The chest tubes are out!! They started by just switching the chest tube to a bulb but once she ate and proved that there was no leakage they decided it was time to come out. Cue mama and daddy and grandpa and nana to go to the cafeteria!! Tomorrow should be the day for the  pacer wires (just a precaution) and a few other things. It is tentatively looking like we will be home on Monday.

 I can't say enough about how supportive our friends and family have been. We are so blessed to have this surgery done in our hometown. I know many mama out there in bloggy land that had to drive an hour or two away from home. Our family had to travel to see us so their time here is limited but much appreciated. Our friends in Madison have kicked butt! Thank you Kristin and Georgia for your constant support and ongoing love for Harper. It is evident that your love for her is real and that melts this mama's heart. And Miss Tara, well the pics and blanket are amazing and H obviously felt comfy enough to "let it rip" in front of you!

Send some sugar Harper's way but also for her new friend Charlotte who we met on Facebook and had the same surgery done on Tuesday. We are keeping up with her on Facebook and are happy to report that she was just downgraded from the PICU! Yay Miss C! 

p.s. with all the sleeping H has been doing I have been online obsession: Toms shoes. check out the glitter ones I bought!! I know random tidbit but come on when you buy a pair of shoes a child gets a pair for free!