Moms of Heart

My little chunky superhero. It's hard to process all he's been through in the 3 years since this photo was taken.

He's had 2 more surgeries. Became a big brother. So much therapy. Several hospital stays. A move across the country. His little life has been filled with more adventure than many have in a whole life.

Now that things are calm, he's thriving in so many ways. He's FINALLY potty trained. Making so much progress in therapies. I'm so proud of this little man and all his hard work.

Along the way I've been surviving. Sometimes I thought I was thriving. I think now I was just surviving better than at other times. The pressure, the worry, the chaos is gone. But now I'm a mess. Mentally, but physically too.

3 months out from his last surgery I'm starting to do a little better. But it's been a journey.

Mama if you're also on a journey - I see you. It's hard. It's sometimes impossible. If you feel alone, you don't have too. Come join us on discord.

Link in bio
(https://discord.gg/dPtEtUNf)

How can you make a hospital feel like home?

When you know your child is going to be in the hospital for a long time what can you do to make it homey?

How do you prepare to be away from home?

Have you been asking these questions lately? I have been collecting resources over the last 5 years have I've been in and out of the hospital with my son.

I will be sharing them all on the podcast coming up. Join me for our first episode this season. Jan 20th.

Come hang out with the growing community on Discord.
(link in bio)
https://discord.gg/dPtEtUNf

Almost 24 hours after giving birth I finally got to hold my miracle baby boy.

Postpartum hormones, fear of what was next... I was so emotional. He had open heart surgery the next morning.

I am so grateful to the nurse who allowed me to so gently hold him for an hour that night. I was exhausted. Besides this picture I cannot actually remember this moment. Maybe it's because of the trauma of it all.

I had worked as a nurse for years before this moment and I thought I was prepared for what was to come. I couldn't have been more wrong. I don't know if you can fully prepare for the journey of having a child in the hospital. But I want to help.

I want to tell you all the things I wish I knew that day. I have tips from collected from other parents I've gathered and I want to share with you so maybe your journey is a little easier.

Community was something I longed for, and eventually found. But I want to help connect you to other parents too.

Check out the links in my bio. The podcast launches on Jan 20. You can join the discord or Facebook group now. More things are to come. Hang in there mama.

My adorable photobomb.

We are at the end of crisis. Henry is now considered stable and we don't expect any future open heart surgeries. Some Cath procedures and follow ups but the crisis has come to a close.

5 years living in crisis mode takes a toll. In this picture we're about 2 years in. We were making the best of it.

We came home from the hospital and Henry was strong. He was doing the best he ever has. I fell apart. I finally could. It took me months to reach out for help. Turns out this is common for moms to feel this way. My brain finally has space to process the last five years and it's been a lot.

Maybe you've been journeying with me all this time (thank you) and you are feeling the same. You are not alone. This is normal. There's a way out. It won't be like this forever.

You're headed to the hospital with your kid. Maybe for a long stay. How do you prepare? What do you pack. How do you process? It's overwhelming.

This season on the podcast we are talking about all the things. Start from day 1. You got the news that you have to go to the hospital with your child. Maybe during a pre-natal visit, and ER trip gone wrong, or a routine check up that came with a big surprise. However you landed here for whatever reason, I want to help you find the resources you need and a community.

Have you joined our Discord or Facebook Group. (I recommend the discord) Come make some friends who are on the same journey or have been there before.

Link in Bio
(https://discord.gg/dPtEtUNf)

After almost 3 years of infertility struggles this picture changed everything. My first glimpse of the life inside me. I loved this picture because his heart looks like a heart.

Fast forward 14 weeks and we found out his heart was developing abnormally and our little miracle would be diagnosed with Hypoplastic Left Heart Syndrome. Somehow this picture meant that much more to me.

We're 5 years out from that awful week. But maybe you've gotten bad news like that recently. I just want to say I'm sorry. It's the worst. The unknowns are overwhelming. Grieving the loss of the future you expected is normal and ok.

The first episode of the podcast is all about dealing with the bad news. I goes live Jan 20th at 7 pm CST. It'll be a live stream. If you want to know the details make sure to go follow me on Youtube and turn notifications on for my posts so you don't miss a thing.

Together we can support each other through the good, the bad, the victories, and the devastation.

Youtube link in bio
(https://www.youtube.com/channel/UCspOkQxP8kdOcvvGsY6qT5w )

The podcast really is starting in a couple weeks. Episodes are recorded. I'm editing them today. I'm doing things a little different this time around.

Audio version will be posted to the usual platforms. But there will be a live video version on Youtube. I hope you join me. Jan 20th will be the first livestream. I'll introduce the podcast - play the video and be active in chat through the podcast then join you live again for an after show.

I chose to do this format so there is more of an aspect of community. While I think it's important to have support when you have a child going into the hospital I think it's more important to have community.

So join the growing community for the livestream Jan 20th at 7:00 PM CST. I can't wait to see you there.

I'm a day late to the party. Happy New Year!

I've been inconsistent posting and I keep trying to get the podcast restarted. But I've been struggling.

2022 was really hard on us. Since we got home from my son's most recent surgery he's been stable and I finally felt safe to fall apart... and fall apart I did.

I'm still getting myself together, but therapy, meds, a good book, journaling, and a project or two and I'm feeling a little better.

I think I'm finally in a place to help support others going through the chaos we've experienced the last 4 years.

So here's to a fresh start, a new year, and hopefully - a brighter tomorrow!

I got stuck.

I’ve been trying to get the podcast ready to launch and I’ve been frozen. Pretty much in every aspect of life.

I’ve been sick for a bit and I had to be still. In that stillness my thoughts have gotten confusing and overwhelming.

I can’t authentically prepare and record episodes to help you through the deep hard parts of hospital life when I’m knee deep in the emotional hard part of processing the after.

So I finally decided I’m going to start recording backwards and hopefully find a clearing in the fog as I do.

Might mean we launch a little later than I planned but it also means it’ll be good and deep. I hope it helps and encourages you and other moms on this journey.

So, I plan to start recording this evening and I look forward to sharing with you bits of this first season of the moms of heart podcast relaunch as I edit and update everything.

Thank you to all of you who have been patiently hanging around and supporting me as I figure out how to provide the resources in my head in a tangible and helpful way.

Sometimes it’s all I can do to keep up with doctors appointments and therapy visits.

This last year I feel like such a failure as a mom. Not a birthday we celebrated. Holidays were barely mentioned. The daily grind consumed me.

Something about thanksgiving struck me. These memories are lost forever. For me and for them. We can’t go back. That time is gone. The moment past.

So today we change. We are making an effort to prepare our house and our hearts for Christmas. We have been reading an Advent story at dinner time (at the table!) every night. We are doing some other new family traditions to make memories and I’m already thinking and planning for Elle’s birthday in January.

Thank you .smartt for the loving encouragement to make the most of these moments that have been passing me by.

We’ll restart our live hangouts with the new podcast launch in the new year.

Mayo Clinic road trip # 3

While these trips can be stressful and difficult seeing doctors and getting tests done… I worry about the news we might get…
I am always thankful for the memories we make on these trips. I’m thankful for the books we listen to as a family. I’m thankful - even if it means driving in the snow 6 hours each way.

Do you have to road trip to major medical centers on a semi regular basis? How do you make them memorable?

Who’s excited about this?! 🎉

Moog is excited to introduce auto prime, a new feature on both the Infinity and Infinity Orange pumps that will provide quick and easy priming of the delivery set. With a touch of a button, the Infinity can completely prime the delivery set and prepare it for feeding.

For more information on auto prime, click here: https://www.moogmedical.com/infinity-autoprime-update/