On the Road with HEART-2013 edition

It was at my routine 20-week ultrasound that Dan and I found out something was wrong with Elijah's heart. I will never forget sobbing on our living room couch, Dan's arms wrapped around me, wondering what was in store for our precious unborn baby boy. It was one of my saddest, scariest moments.

I scoured the internet for information and support. I found a lot of really scary things, but I also discovered some awesome blogs that were written by parents walking very similar paths as ours. They, too, were scared, uncertain, wanting to understand and wanting to be understood.

In the years that followed, as Elijah's story unfolded and as he accumulated more surgeries and time in the hospital, my connections with my fellow heart parents grew stronger. My love for them and their precious heart kids grew, as well, as they endured similar experiences as our family. My heart broke for all of them because I knew the pain. And I know their hearts broke for us, too, when we were the ones in the trenches.

These people, most of whom I have not yet met, have supported and loved our family through some of our darkest times. In many ways, I feel like I am closer to them than anyone else because of the uniqueness of the experiences we have endured "together." There is an intensity in the tears we have all shed for and with one another. Tears of happiness and sadness and relief and anger and pain and uncertainty and joy and frustration. That intensity, I believe, is extremely unique and bonds us closely together.

I would not be the mom, or even the person, I am today without these heart parents and their awesome kids, who have encouraged me and inspired me over the years beyond anything words could ever explain.

And so, I am packing up my own heart kid and his sweet little bro, and I am driving to the doorsteps of (the eastern sector of) these awesome families. I hope they are ready for hugs, and maybe a few tears. And I hope they know what amazing things they have all done for me over the past seven years.

Honest scrap

I don't normally do these awards things, but this one is fun and I just love Amber so much and she is the one who gave this to me and I have been a blabbermouth anyway lately, so..

The rules: Choose a minimum of 7 blogs that you find brilliant in content or design. Show the 7 winners names and links on your blog, and leave a comment informing them that they were prized with "Honest Scrap." Well, there's no prize, but they can keep the nifty icon. Then, list at least 10 honest things about yourself.


I'll start out with 10 things about Elijah since he is way more interesting than I am..

1. He likes to put his finger to his puckered lips and say HMMmmmmmmmm, like he's thinking really hard about something. He knows this is funny for us, so he does it a lot and I love it.

2. He is and has always been a poster child for good nighttime sleeping. Naps are another story.

3. He has made more progress with gross motor skills in the last 4 months than in the 20 months prior to that.

4. He has a funny toe. It's the one next to his pinky toe on his left foot. It sticks out at a weird angle and looks like it got put on the wrong person. I think it's cute.

5. He gets super excited when we tell him "last bite!" This is so exciting to him that sometimes it's hard to get the aim right and his last bite ends up on his sleeve.

6. He does not like people touching his feet. Ever! I think this is most likely the pulse oximeter's fault.

7. He likes to sit on the floor in the bathroom and open and shut the door. Every time it opens, he says HIIIiiiiii! and every time it closes he says BYYyyyyee! Repeat a thousand times. It never gets old.

8. He thinks Dan's belly button is fascinating. He plays peek-a-boo with it.

9. He has had two open heart surgeries, five heart caths, one bronchoscopy and one hypospadias repair, and we're praying hard for an entire year of no surgeries.

10. He yells HIIiiiiii! from his crib in the morning when he thinks it's time to get up. Even at 5:20, I think this is the cutest thing and I always let out a giggle.

11. I have to add one extra...He is LOVED.


My blog choices are all heart mama blogs (of course)..

Hollie's blog Walking the Fine Line...
This woman is AMAZING. I'm pretty sure I don't know a single human being who has had to endure more than she has. She works extremely hard for her two children. Her youngest has been in a hospital or care facility for her entire first year of life! Her blog will make you laugh and cry and hug your family more tightly.

Kathy's blog, Rollers in Vegas...
I love Kathy. She happens to be the kindest, most genuine person on the planet. We got to meet her and her family last summer in person and they are just an amazing little family. Little baby Isaac, her youngest, is just the cutest, sweetest thing. Kathy's blog will make your head spin. Their lives are full of lots of action!

Jennifer's blog, Home of the Four Trans...
I always love reading Jennifer's blog because she is such an eloquent writer. She forms perfect sentences out of jumbled thoughts from my brain that I am unable to form into coherence. Her little Justin is such a cute little chubby baby! I admire the love that Jennifer has for her family and the way that she expresses it.

Amber's blog, What's New With the Baker Family?...
Amber has little heart baby Grace, among three other cuties. She and her husband also foster children and open their hearts up to any child in need. Amber has a heart spilling with love. Her blog always has depth that I just love. It always pushes me to live a better life. Plus, seeing photos of that sweet little Grace face always makes me smile.

Krista's blog, The Layman Scoop...
I've been following Krista's blog since her little angel Kate fought for her life and eventually went up to heaven. Despite their struggles, she and her husband and son have continued to live faithful, fulfilled lives and not many people have inspired me more than they have.

Janes's blog, Ramona Mae...
Jane is another one who takes thoughts out of my brain and puts them into lovely typed words on a computer screen for me to read. Her little Ramona is such a special little girl, filled with so much sweetness! I love the simplicity and the strength I feel while reading Jane's blog.

Andrea's blog, Heart to Heart...
Andrea has little heart kiddo Drew and spunky little Ava. Drew has had a few long hospital stays but he is such an energetic little man now. I love reading about this family's adventures. They are such a motivated, energetic family, always on the go and always helping out others in need. Andrea has a huge heart and her blog is so honest...and FUN.

Vacation Part II (the normal part)

Once we got to the airport and absorbed everything that had just happened, we realized that it was true. We were really ON VACATION. Our flight was delayed, but that worked out perfectly because it gave us a chance to eat and have a margarita before getting on the plane. We had a fabulous time Thursday night once we got there. We met up with our friends Lance and Stephanie and Stephanie's brother Brent ("51"), who had all flown in a bit earlier that day. We gambled at some cheap tables till pretty late and I walked away from the roulette tables $100 ahead!


Our fun room at the Mirage


Dan, Lance and Fifty-One. These guys were soo much fun to be around. I loved every minute of our time together.


Cute (and expecting) Stephanie and me (not cute or expecting)


Resting on the Ballys walkway


So happy to be away from MN for a while

Friday we sat by the pool, walked around a bit and had a pretty low-key day. We went to the very yummy seafood buffet at the Rio that night and later did some more gambling. This time Dan walked away with extra cash from the blackjack tables.


The pool area was soooo nice. Why can't I be sitting there RIGHT NOW??

Saturday we got to meet The Rollers! I was so excited about this and they turned out to be just as kind and sweet as I expected them to be. Kathy and Joe are inspiring parents and warm people and their three boys are all ADORABLE and I wanted to take them all home with me. It was such an honor to meet them. Baby Isaac was such a lovey, cuddly man. I held him for a few minutes and he snuggled right up against my shoulder the entire time. I loved it! The two older boys went on some rides at Circus Circus while the rest of us walked around and chatted.


Look at this sweet munchkin face. I could just love on him all day.


Lovey boy. He can gladly cuddle with me as much as he wants.


Look, I think Kathy is as short as I am (she's even standing on a slight incline, so we were just about exactly the same height)! I couldn't believe it. I don't have a single friend my height.


Look at this cute family. Kathy and Joe are in serious trouble. Girls are going to be pounding down their door constantly.

We came home on Sunday and it was bittersweet. Vacation went by so fast, but at the same time I was ready to see my chunskter. When we picked him up at Auntie Lissa's, he didn't know what to think. At first he was excited and flapped his arms endlessly. Then after a few minutes, he wanted Daddy and no one but Daddy. Not even me! :( That was tough, but I understand. He spends most of his time with Dan, so that only makes sense. Until we left Lissa's, if he wasn't in Dan's arms he was sobbing. The car ride home was a mess, which is unusual. He was feisty and crabby and not himself at all. We think he was saying to us: WHY DID YOU LEAVE ME? That and I think he's slightly sleep-deprived just from not sleeping in his own bed for a few nights. I put him to bed at 6:00 tonight, but he was easily ready by 5:30.


On the way home from Lissa's yesterday, before the crabbiness began. He kept doing his really flirty face as if he didn't know us and was trying to impress us.

Lissa & family did such a great job taking care of our man, especially with the challenges they faced with their house and the weather. We are so lucky to have Lissa and her sweet little family. Not sure what we'd do without you guys. We love you!!

Unwanted club membership

Being a part of this heart world is something that we never wanted. No one asks to be in this club. It's a world filled with uncertainty and worry and panic attacks and hospitals. But under the surface, there are actually perks of being a member. It allows us parents to experience a whole different dimension of life that would have otherwise gone unexplored. In our exploration of this new life, Dan and I have met so many amazing people. It has been invaluable getting to know other families who are dealing with similar issues and it's also very rewarding to be able to lend support to them when they need it. We are now a part of this club that no one wants to be in but at the same time we all love being in because the people we've met are EXTRAORDINARY and they have EXTRAORDINARY babies.

We have received so much love, kindness and support from people who we've never even met. We recently received a Valentine's Day package from Krista, mom of Angel Kate. It was so thoughtful and perfect! Thank you for your kindness, Krista. It has been such an honor to have gotten to know your precious baby girl before she had to go home to Heaven. Elijah adores his new book (and I plan on devouring the candy.....yummmmm). This sweet little book will be our way of having a part of Kate in our house forever.

Another one of my most favorite heart mamas, Samantha, has also been very thoughtful and giving throughout this journey. In addition to being an amazing source of support, she made and sent Elijah an embroidered VERY SOFT blanket a while back and now she's sending him a birthday gift! What a spoiled boy! Samantha, you have been one of my main sources of comfort in this journey.

I love all of you heart parents so much. I don't know what I'd do without you. Honestly. I get overwhelmed seeing the selfless generosity and kind words and encouragement coming from every one of you and I'm so thankful for it. I adore you all and I truly care about and love your precious babies. Thank you for the constant stream of amazing love and support and also for sharing your lives with us.

Ok, now we all need to meet in person! What a perfect excuse to go somewhere warm! Get ready, Kathy and Terri, we're all coming to your houses.

p.s. I just re-read this post and it totally appears like I'm saying that sending us gifts is the only thing that equals kindness. NNOoooo! Not what I meant. I just wanted to thank these two ladies for taking the time to send Elijah a little something, but I most definitely don't expect that in the least. From anyone! Reading an encouraging comment or knowing that someone said a special prayer for our boy or even just taking the time to read this blog is enough for me!


Enjoying the new book before bedtime. Thanks, Krista!


The book is perfect. It talks about how if our little boy weren't a part of our world, we'd have holes in our hearts. Aaw.