Sage’s Journey with CHD

08/24/2025

Lane you will always be one of the strongest kids I know 🫶🏻

What a week. We got to Austin Tuesday, late afternoon, barely made the drive due to acute respiratory distress. Stayed in ICU until discharge yesterday.

We left the hospital with positive pressure support for nightly use.

Lane is positive for rhino virus which often hits complex kids (especially cardiac kids) super hard, but this hit seems WAY hard for rhino.

I had to call 911 on the drive home as Lane vomited uncontrollably and became limp… EMS grabbed him from the car, tachycardic and limp … as soon as we laid him flat, he perked up and his vitals stabilized.

This confirms what we already know - his intracranial pressures are not stable. Being upright puts so much stress on his body.

Side note — We do not go to the hospital to “fix” anything anymore. We are signed on to hospice care and confident in our decision… We go to the hospital to help support us through respiratory viruses.

Anyway. It’s been a week. We’re home now and I don’t know Lane is out of the woods .. his lungs are still not clear and he’s struggling 😭😭

We leave for our Make a Wish trip tomorrow. The timing couldn’t be worse so please keep us in your prayers 🖤🖤

** pic from Thursday night **

08/23/2025

Any of my Gtube moms deal with prolapse? If so what did the hospital do for your little one? Sages is getting so bad and nothing is being done about it.

08/16/2025

We're still waiting for updates from GI and surgery about sages prolapse. Alastor's surgery is set for September 15th, and we're making the most of our time at home. Now, Alastor is starting to walk independently!

08/14/2025

08/10/2025

The big boys start school in 4 days, and with that usually comes sickness, so we went to Chuck-E-Cheese today, bringing some of their cousins along.

08/08/2025

I am doing a drawing!
Please ignore my thermostat…I don’t have anywhere else with a hook that I can take a photo 😅
But in the night when I can’t sleep, I pray and I make things (therapeutic, no?)
I actually used to have a little side hustle selling these when my first was just a little baby. I’ve always enjoyed creating.
Anyways, I know it won’t be everyone’s cup of tea but I worked really hard on this macrame dream catcher. It is about 2 feet long and has a burlap flower and fake eucalyptus leaves. I love it 🥹
As a form of fundraising, I will leave it open for one week.
Spots for the drawing will be $5 and I will post the link in the comments on how to enter!
But I will pick the person on 8/14 which is the day we are supposed to get sawyers tablet fixed.
I will ship within the US if not local to me.
Thank you for loving us❤️

08/08/2025

Sage's tube has become significantly worse, and we continue to deal with it. Alastor's surgery is set to take place at the end of August or the beginning of September. Due to the recent chaos and hectic nature of our lives, we have taken a short break from social media. I will try to update more, even with just things from our daily lives; we did go to Chuck E Cheese last weekend, and Sage had an absolute blast.

07/30/2025

Last night was a very prayerful night for me.
Sometimes life can feel like we are getting these “drips” of God’s presence.
Sometimes life can feel like we’re getting the bare minimum. Enough to be told, “you should be grateful” and we ARE. But two things can be true at the same time. We can be incredibly grateful for the grace we are given while also knowing that we need abundantly more.
And as we were walking into labs this morning, this was written on the whiteboard in the hospital lobby.
I don’t know who else needs to hear it.
But I took the hand of the lady checking us in and I said, “I needed to hear that.”
And she squeezed my hand and said “I know.”
So, I’m sharing it with you.
In case you need it too.

07/24/2025

There's been some discussion lately about the term "glass children" when referring to siblings of medically complex children. Some people hear "glass" and think it implies fragility or that these children are easily broken. However, for many families, this term actually resonates deeply and isn't seen as negative at all.

The term "glass children" often refers to the idea that parents of medically complex children sometimes have to "look through" their other children to focus on the child with the greater medical needs, much like looking through a pane of glass. It's not about loving one child more than the other, but rather about the immense time, energy, and resources that are often necessarily directed towards the child with significant medical challenges.

For many siblings and parents, "glass children" accurately describes their experience:

Acknowledging Their Unique Experience: It validates the often unspoken reality that these siblings navigate a different childhood. They may take on more responsibilities, experience more disruptions, and sometimes feel overlooked due to the demanding nature of their sibling's care.

A Sense of Community: For siblings who identify with the term, it can create a powerful sense of community and understanding with others who share similar experiences. It's a way to acknowledge their unique struggles and triumphs.

Not About Neglect, But Focus: It's crucial to understand that "glass children" doesn't imply neglect or a lack of love. It speaks to the practical realities of managing complex medical conditions, which often require an all-consuming level of attention.

Ultimately, the intent behind a term matters. When used by families who identify with it, "glass children" can be a powerful and validating descriptor for a very specific and often challenging family dynamic. Let's foster understanding and respect for how different families choose to describe their unique journeys.