Two years ago...

Two years ago today was a hard day, we were preparing for Harper's open heart surgery. I remember that day  like it was yesterday. I remember our pre-op appointments were terrifying. The lab techs couldn't find a vein to get enough blood work so they sent us home. Hours later the hospital called and told us we HAD to have blood done so we went back in. Tears streaming down my face. It was terrible lead up for what the real procedure was about.

I remember what Harper wore that day. I remember cuddling with her when we got home. I remember crying. I remember not being able to cry enough. I remember my friend Kristin coming to my house to hand deliver me a necklace that brought us so much luck. I remember taking a shower so I could fall to my knees to cry and pray. 

Just like last year, I took Harper (and this year Brooks) to visit the PICU staff at AFCH. We brought them a basket of goodies to show our appreciation. We even got to see one of the nurses that helped take care of her. It was great to show our love and appreciation to the many who helped take care of our baby. 

We were lucky that Harper recovered so quickly. We have been lucky that we haven't been back to be admitted. Many kids with Ds are frequent visitors to their local children hospitals and (knock on wood) we have avoided it. 

Tomorrow we will celebrate. Between diaper changes, bottle feedings, and a crazy 2 year old screaming at me. But by gosh, I will make time to hold H a little tighter. 

One Year Ago Today

One year ago, I woke up with excitement and anticipation of learning the gender of our baby. I knew it was a girl. I had, pretty much, forgotten that 8 weeks earlier my First Trimester Screen came back flagged for Down syndrome. The chance of a false positive was higher than our child actually having Down syndrome.

I remember exactly what I wore. It was going to be my lucky outfit. When I was home after the appointment, I remember thinking that the outfit was cursed instead of lucky. A few weeks later, I wore it again and made sure to say out loud, "this is a lucky outfit." 

I am not going to relive all the details of that day for you. But I will remind you that yes we were shocked and saddened but we quickly realized that Baby Girl Bohacek was just that....a baby girl. She needed us. We told our family that. That she was a baby who happened to have Down syndrome and a heart defect. And that we loved her.

Man, do we love her. 

May 6th, 2011 will forever be in my memory. It is the first of many anniversary's we will celebrate with Harper. Having a child with Down syndrome and a child who conquered Open Heart Surgery makes every day a celebration. I look back at this day with sadness for my sadness. I wish I knew how normal life would be. How amazing Harper is. How she can keep me up at night but when I see her smile in the morning I immediately forgive her. She definitely has made life interesting and changed it the second she was born. 

I look back at this day with gratitude. Gratitude for the wonderful medical professionals we were blessed with. Everyone we encountered that day was amazingly supportive. Laura, what would we have done without you? I hope you are reading this and know that we survived because of your kind words.

I look back at this day with love. Yes, I was sad and heartbroken. I was mourning the loss of a healthy child. But I now LOVE this day. I am able to pinpoint the exact day that I turned into a mother and Andy a father. We had to make difficult decisions for another person. Life altering decisions were made on May 6, 2011. This day turned us into parents. We chose to do an amnio for us but we chose not to abort...for Harper. 

I look back at this day with a huge smile on my face. Harper is the ketchup to my fries, the water to my ocean and is the smile to my face. I adore this little one. She radiates happiness. 

May 6th, 2011....Thank you.

 

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!

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

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!

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 shopping....new 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! http://www.toms.com/womens/glitters/silver-glitters-shoes

Post Op Day 1

I know most of you are looking for a detailed explanation of yesterday went. I honestly don't have it in me but I promise I will write about it soon. I want to have a day by day account so others will know what to expect. I want to "pay it forward" (right Heidi?!) to other mama's out there who will someday be going through this exact same thing.

Let me just start with...Harper is doing fantastic! The medical team here at American Family Children's Hospital in Madison, WI are absolutely AMAZING! Every single person here is sincerely kind from their head to their toes. And that includes the surgeon, Dr. A. who repaired Harper's heart. He doesn't have to have a super bedside manner but by gosh he has a great one! If I feel comfortable to joke around him then he is ok in my book. Amazing amazing I can't say enough about everyone here!

Today is the first full day post surgery and girlfriend already has her breathing tube out and THANK GOODNESS! She hated it. She hated it so much that she tried to take it out herself. She was restrained but that didn't stop her either. So far a Badger sock is doing the trick but we'll see how long that lasts!

She had a special visit from 2 of the UW Badger hockey players. They are too old for her but that didn't stop her from breaking their hearts!

As we waited yesterday for the surgery I was able to read all the posts, emails, facebook messages etc that were left in Harper's behalf. There is no physical way that I can repay all of you (who are essentially strangers). The only way I can is to be your support team for when you need it. Just say the word and I am there.

We left to eat an early lunch while H's breathing tube was being taken out and I came back to find 65 emails in my inbox because 65 more people had posted on my blog with well wishes. I hadn't cried since Harper came out of surgery but I shed some tears over the amount of of love and support we have received by complete strangers. Where did everyone come from?! I knew I had readers that are not counted in my followers but WOW I appreciate every single comment! Since publishing this I came to realize that HEIDI sent out a love bomb!!! WTF, that's amazing (I know I need to use a thesaurus)! What an amazing idea!

We are truly blessed to have Harper Alice in our lives, a supportive family, and a supportive bloggy family to help get through this difficult time.

I must run, Harper is up and itching to be talked to.  But here is a video of our wiggly worm!

A New Year

Last year at this time Andy and I were in California to watch the Badgers in the Rose Bowl. Despite the loss and the crazy way we got there, I would do it again. And I'm grateful for that trip, probably the best trip of my life because ....pause for warning of too much information....that is where Harper was created. Gag. I know I apologize. But honestly that trip created the best year ever for me. Without that trip I wouldn't be where I am now. Snuggling with my little angel. My pregnancy and my daughter is the best thing that ever happened to me. It wasn't an easy year on my emotions and 2012 is going to be the same right from the start.

I have never had a new year's resolution that I stuck with. But honestly who has? This year I'm not even going to pretend to have one. What I am looking forward to? A successful and uncomplicated heart surgery for Harper. My goal is to be a strong mama for little H. If I'm strong and calm she will be too.

I am overwhelmed by the number of emails, comments, and posts that have been sent my way. I open my email every day expecting nothing and I have many emails to respond to. THANK YOU! Harper hasn't even had her surgery yet but I feel the love. Big time.

As this weekend and year winds down I am busy getting ready. Trying to get the house back in order, trying to pack for the hospital (any advice is appreciated), and savoring every moment with H.  She's trying so hard to hold her head up all the time. She is a part time head holder but my guess is she will be a full time head holder the day of her surgery. Not sure if that's good or bad!

I promise to post again before the surgery and definitely throughout the process. If you are on Facebook and we are not friends yet please find me and add me!