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.

Road Trip #2

We are home from Road Trip #2 and we are tired. Vacation alone is tiring and when you add getting up two to three times per night with a newborn it becomes even more tiring. We had so much fun, though.



We spent a lot of time with family we haven't seen in a while and enjoyed every moment of it. Everyone loved Samson like crazy! He got loads of attention.



Elijah fell in LOVE with Uncle Joel, and the cousins loved him, as well.



We went for a boat ride and at first Elijah was very nervous about the whole ordeal. Before we left the dock, he said, "OFF!" repeatedly because he wasn't so sure about the situation.



We also found our dream house.



After a while Elijah was braver than I ever thought he could be. He stood at the front of the boat ON A STEP, WHILE THE BOAT WAS MOVING and didn't get uncomfortable. I was so proud!



He even got to drive the boat. "Do it 'self!" he kept saying.



I love spending time with my wonderful family. It is always so hard to say goodbye to everyone, but we are grateful for the time we had together.



Gramps and Samson had some good bonding time.



Elijah perfected saying "NO!" and "HI!" to everyone and we also realized that he is not so good anymore at sharing toys. That is something we need to work on!



And as a special little treat, we got to meet up with our heart friend Wilson (and Amy and Mitch) on our way home. We met Wilson and Family two summers ago and we were so happy to be able to see them again.



Wilson loved the slides at the park we went to and, of course, Elijah was hooked on the swings. Oh man, this kid loves to swing!



So, tomorrow I leave, with my two little boys, for Road Trip #3 to Northern Minnesota with my dad and stepmom. I have no idea how we are going to survive the exhaustion, but it will be worth it and tons of fun.

p.s. to two posts ago...

I should have explained the underlying reason for my worry, especially in regards to Elijah's recent lack of interest in food. When you have a baby with health problems, things like poor eating can be very stressful and worrisome. Loss of appetite can be one of the first signs that something is wrong with the heart. Almost every heart baby experiences this at some point.

In fact, most heart kids have or have had a tube that goes straight into their tummies to feed them. My good heart mommy friend Samantha's Baby Micah has a heart defect and he just stopped eating one day. He went months and months with eating very little food. He actually was starting to starve and stopped growing. He ended up getting a g-tube so he could be fed without having to consume food. Thankfully, Elijah has never had this issue, but the fact that he's one of the few heart kids who has not had a g-tube reminds me that he's not immune to the possibility. When he refuses food for an entire day, my mind drifts in that direction.

The state of his heart always lingers in the back of my head, with every little variance from the norm we see in him. Am I alone in this? Moms with heart healthy babies AND heart babies, do you worry more about your heart babies?

I feel like it's not quite as easy to follow the standard guidelines on parenting when a heart kid is involved.

Another angel sent to Heaven

My heart has been breaking all day today for Colin's parents. Colin was such a brave, cute, strong little 2-year-old boy who passed away at home on Sunday. We have been following Colin's journey with Congenital Heart Disease for quite a while. He had the same heart diagnosis that Elijah has. Please send up lots of prayers for his sweet parents and family. I'm sure they will appreciate any prayers they can get.

What a sad day. My heart aches so badly for Colin's family.

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!!

Weekend

I have a bunch of pics to upload, but won't get to them till tonight, so check back for those! We had a really fun weekend. We loaded Elijah and the million things required to properly care for him up and headed to the dropzone for the weekend. The dz is currently having some serious plane issues, so there wasn't a whole lot of jumping being done. It was a quiet, low-key weekend there but I think that's just what I needed. After I put Elijah to bed in our camper on Friday, I left Dan in charge and my friend Jess and I drove to Stillwater to watch the fireworks by the river. It was PACKED full of people and the display was super short, but of course still beautiful. After I put Elijah to bed on Saturday, leaving Dan in charge again, I drove over to St. Paul and my friend Ellen and I walked from her house to the Taste of MN. Mmmmm, my tummy was growling for cheese curds and greasy fried food. We intended to watch the fireworks there, but it was 10:35 and still hadn't seen anything, so we watched them as we walked (backwards) back to her house.

On Sunday we got to meet Elijah's little buddy, Wilson, and his parents for the first time. Wilson has the same heart defect that Elijah has and we have been following his journey for quite a while. They live in Ohio and were in Lakeville visiting family for the weekend, which happens to be very close to where we live, so they stopped by our house in the afternoon. They are such a sweet family and Dan and I enjoyed having the chance to talk with them in person. It was really sweet watching Elijah and Wilson play next to each other. I'm thinking Wilson should tour the country and show all the other babies what's up with the sign language. He is two months older than Elijah and he knows so many signs! What a smart boy. He even signed elephant for us. That's a hard one! THANK YOU for stopping by, Mitch, Amy and Wilson! It was soooo nice to meet you. You are such a beautiful little family. Elijah says thank you for the puppy book. Let's plan on Bridge Day 2009! Not participating, just watching. :)

Dan and I are heading to Vegas on Thursday, so I'm soaking up my Elijah time as much as possible before we leave. We get to meet the Rollers while we're there. Two heart babies in one week!

Kate's Kart

Please check out Kate's Kart when you get a chance! Baby Kate passed away a few months ago due to heart failure. Her parents have started an organization to provide hospitalized kids with free books! Send them lots of books to fill the cart up with!! This is such an awesome thing that they're starting in honor of their little girl.

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