10/31/2024
I just want to take a moment....
3 years ago we celebrated Halloween in NICU getting some pics taken before going home.
Eric and I did our overnight trial at the hospital.
And we prepared to bring home a baby trach/vent with severe needs. She came home the first week of Nov 2021. Almost 5 months in NICU.
We didn't know what life would be like, we were nervous about being solely responsible with no nursing help. We were told so many things she wouldn't or we wouldn't do as a family, for Carley, and for us as a couple.
If you work at a Children's hospital... the greatest thing you can give is HOPE. that there is LIFE outside of that place. Even if you adapt and adjust to your "new normal" ... there is still good life.
And now... our life looks mostly like everyone else's again. Just with a few extra supports and accessories but those are dropping off too!
We didn't know if she would ever be off the vent. She's off now 16+ hours and hopefully weaning nights soon.
We were told we would live at children's hospitals... we haven't been inpatient in 18 months. And we only have been twice since discharge from NICU and it was only a couple nights each.
We travel. We vacation. We camp.
We are moving towards being back into horses.
Doctors are not God. They do not know or understand everything. Don't let them control your destiny. Find your team that is supportive and shares your vision and helps you get there. Don't settle for what they *think* could happen.
Believe in yourself. Your child. Your family.
Believe in your capability to rise and shine in any circumstance. Because faith, hope, and love go a long way. That's what carries you through the hard times. Knowing it doesn't always have to be like this.
In 2024....
Carley has had zero major illnesses.
She started preschool.
She's been on so many trips. (Disney, NYC, camping, Philly)
She is moving into a big girl bed 🛌
She started using a gait trainer to work on walking.
She got glasses.
She's using her vision all the time.
We don't use a pulse ox during the day, we barely use the suction.
We leave the vent at home 🏡
She got her medical stroller to tote all the things we are rapidly dropping lol
We have had our day nurse for over a year and he is now full time! (What a blessing)
She is happy, healthy, and thriving in her own Carley ways! ❤️
The best things are the things she gave to us.
She brought us back to indiana, closer to family. More time with our parents.
She brought Eric home. No more long hours of mandatory overtime. He is home in the evenings and weekends and spends way more time with the kids. They love having both of us around.
She taught us so much about a world we didn't even know existed and showed us what we are capable of. Lessons of hope, resilience, love, compassion, connection, and asking for support.
I cannot say enough about what having a complicated kiddo brought to our lives, so much more than it took away. While we don't know what the long game outlook is like for Carley... we do know we will love and care for her as long as we have her. And she is thriving and improving every day in her own subtle ways.
The biggest lesson for me has been learning to follow my intuition even in the face of opposing opinions. To be able to stand alone and declare for her what others doubt. To notice the subtleties and appreciate the slow.
I'm a fast mover and do-er.
Learning this world of slow and subtle has been a challenge but the greatest gift. I'm still a mover and do-er but I do it in a different way. In my way. I make my own decisions and put my energy where I want and I take action that aligns with my soul beliefs... not the influence of others.
That gift is worth gold.
My girl, happy almost home-iversary ... we are so happy you're home! ❤️
Have a great day at prek celebrating with your friends! For they have grown to love you as you touch their hearts too. 💕
PS pic is a trike her teacher got her to participate in playing outside :)
