Ronald McDonald House- Salt Lake City Edition!!

Here was the serving and clean up crew!  The picture accidentally had a filter on it so I tried to brighten it up- Oh dear!
L- R Lisa, Me, Ryanne, Julia, my dad- Dave, my mom- Sheila, Jason, Laura, Jeff, Ben, Barbara and Luke.

Here is the preperation crew!
L-R John, Neils, Barbara, me, Natalie, my dad, Jason, Jeff, my mom, Julia and Luke

My mom made her homemade rolls to serve the sloppy joes on.  Some people came back for more homemade bread, or took a plate of bread only:)

Great Aunt Shauna watched our kids while we went downtown to Salt Lake City to prepare and serve dinner to all the folks staying at the Ronald McDonald House.  

It was such an heart filling experience to serve side by side with our families.  Our siblings and parents and one niece were incredible workers with us.  I felt so much love for all of them and compassion for all those coming through the line.  It also brings to surface those tucked away emotions of worry and vulnerability.  And then hearing a few other stories makes you undeniably grateful for the one that is yours.  

As we were driving away from the event that night, I felt as if my own heart might explode with the overwhelming love and compassion I felt, from my family, from the folks we served, and even towards us as I reflected on what it was like to need the services of the Ronald McDonald house so dearly.  I am even teared up as I write this post.  

The next day I felt so exhausted.  Satisfied and happy, but EXHAUSTED.  Emotionally and spiritually it is awakening to feel the healing that happens when I talk about my experience.  Jeff said to me what will it be like when Lucas is old enough to help us with this?  Made me so happy to think that he will be able to!!  I am so thankful for our baby boy and what he brings to our world!  The love and energy and enthusiasm he shares is totally contagoius.  When we got to Aunt Shauna's he said you are my GREAT GREAT GREAT GREAT Aunt!  She smiled and said I didn't even have to coach you on that:)

Here is the picture we showed:

I forgot I usually write the year on there-- 2012 to 2017

5 and a half years!  I am still so thankful.

When the whole family goes for the heart check up!

Holding still like a statue.  :)

Here is Lucas, almost 5 and a half!!

Oxygen of 99.  BP 89/53

Our heart baby.  Has a heart of gold, and has so much heart.  He puts everything in to EVERYTHING.  Nothing is halfsies, including his fits.

Everything looks good for him!  How thankful, how happy, and how wonderful it is that he is healthy. Sometimes I think what a gift every day we have with him is!!!  Hard to believe 30 years ago the surgery they would have done would have been different, and may have affected him differently through life.  At the very least when he was in his 30's he would have been potetially waiting for a heart transplant.  But with the arterial switch, it is expected that his heart function will last much longer.

But for now he has NO RESTRICTIONS, except the ones his parents put on him. (HAHA!)

We are looking forward to hosting his Ronald McDonald house dinner next month in Utah so that some of his aunts and uncles and grandparents can participate.  SUPER exciting!

Oh, and also noteworthy is the fact that he saw Dr. Gremmels because when I scheduled it I somehow managed to schedule it in St. Paul, but we were in Minneapolis, so he kindly worked us in.
So it took 2 hours and 8 minutes:(

Here are a few things he mentioned:
Still has a leaky valve that is fine.
They will likely do a Cat scan around 10-12 to check things.
NO Restrictions
Come back in a year.
He told him to eat his vegetables, get along with his sister and listen to his mom.

We talked to him again about his profuse sweating, and he says they see this as a common symptom of heart babies, his speculation was that it was the adrenaline they might have flowing right from getting surgery/ having a hospitalization.

Thank you for enjoying (a slightly excessive) amount of pictures of our cardiology follow up.

We are so thankful and could not be happier with the outcome.

I do want to acknowledge the stress I was feeling at the last follow up could have been intermingled with finding out that we were pregnant, and even though I tried not to think about it for the first 20 weeks I was hoping and hoping that we would not have a baby with a heart condition again, I mean I knew we could do it if we had to--- because we had before, but it was in the back of my brain.  And at the heart appointment when Lucas was 3.5, I was aware of that possibility.

And worth mentioning is that when we found out that our babies heart was okay at around 20 weeks, I bawled and bawled.  More about that than finding out the gender!!  Baby Thomas (who is now 17 months) is a healthy boy with a completely uncomplicated pregnancy, labor and delivery.  Which was a remarkable gift for us.  We are thankful and humbled by the joy he brings to our family.
My baby boys.  Lucas told someone the other day that he will always be my baby!  I loved that he knows that.

My heart is full, and happy.  I love our little Lucas so much.  His grit, fierceness and passion are remarkable.  He still can light up a room with his laugh.  And he is so smart it is scary.

Ronald Mcdonald House Brunch

Today we did our annual Lucas Celebration a little early.  It was a perfectly beautiful fall day.  My dad joined us for his first time participating in the event, my sister Aleisha and Mom were amazing as usual.  Several of my friends joined us, too.  We served an excellent brunch.  My mom made homemade cinnamon puffs-  One family said it was the best meal they had had in 6 weeks there!  I loved when people came up for more.  I am so glad that Jeff and I have decided that this is a way our family would give back.  I am already formulating in my head the next time:)

 

 

Volunteering in this way makes me thankful all over again.  So thankful!

3 and a half year check up!

 Ekg.  He loved "helping" take off the stickers. 

 I know these first two pictures look similar, but look at that smile he gives me!!

 Watching doc mcstuffins while getting his echo cardiogram.

So here we are. 

He is doing great.  But to be brutally honest.  These check ups completely stress me out.  I don't know if it is realizing all that is at stake, or could be?  Going back to the place he was born?  Residual stress?  Normal worry about your kid type of shit?  Realizing that even though he is great and well, there will always be this tiny worry in the back of our heads?
Feeling frustrated about waiting for the doctor for ever, and then having all of 7 minutes to talk to her??   (I totally realize part of it is that she has to read the tests they did when the got there, but still.)

Here is one of the happy highlights.  Lucas was thirsty so we went looking for a drinking fountain.  On the way we saw the nurses work office, and they asked what we needed.  When Lucas told them he wanted a drink, they said let's see what we have here.  They had a juice box.  The kid was in heaven!! He was adorably excited.  When we walked back to the exam room where Jeff was waiting, he excitedly told Jeff he got some juice.  Jeff asked if he told the nurse thank you.  Well, he ran back down the hall and grabbed the nurses hand and quickly walked her back to our room, and said she is the one!!  Very excitedly, and made that nurses day.  I bawled watching his sweetness.  And his huge heart.

We spent at least 3 of the 7 minutes talking about Lucas getting sweaty.  It was good because she let us know what to watch for.  But bad because she launched in to what could be wrong and what they would do for that.  Which is fine, and I can handle the facts, but freaks me a little.  For now it seems like he just gets sweaty.  (Shoot, I get sweaty...she said people have different thermostats.)

But in case I forget:
- so sweaty in activity that makes him stop the activity.
- ever complains that his chest hurts in activity
-  remember they have a nurse line if I have questions

OK.  So I am a billion times thankful that he is doing so well, and my mother's instincts are that he is great and will be great.  I guess the unknown affects anyone with kids.  I guess as a Mom, there will always be a part of me that worries about my little people that I LOVE so much. 

SNUGGLE-BUGGLE
A few weeks ago Lucas gave me the biggest hug and said Mom, Snuggle-buggle every day!  I said you bet.  Snuggle-buggle every day, Luke.  He loves with his whole heart.  I am lucky to be his mommy.

He lights up a room when he goes in, he asks people their name, and is a ham.  I love him so much.  I really really do.

So in spite of scary terms like enlarged aortic valve, and leaking in the heart- these she assures us are mild, so I have to trust that.  And watch this kid who jumps off the couch, builds amazing lego towers and then destroys them, and smile.  He adores his big sister and has the best laugh.  He can be sweet and miserable.  I guess I will just snuggle buggle him every day with thankfulness in my heart, thankfulness that I can.