Little Journey's BIG journey

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Little Journey's BIG journey

This page is for all things Journey. Journey is my daughter. She was born full term, April 01, 2021.

At 20 weeks in utero at her anatomy scan, a complex -and rare- heart defect was found that would require open heart surgery shortly after birth to repair.

03/03/2025

Our biannual visits were just turned into annual visits! She had an echo (first photo) and it showed the same results as 6 months ago. Can’t believe it’s already been as long as it has since her surgery in July. As long as her heart remains unchanged, she won’t need another surgery. This was the joy we needed placed into our day today 🫀

10/07/2024

We’ve been quiet for awhile, but in our world it’s definitely true that no news is good news! I posted these preschool photos from my personal page but thought I’d share here because Journey certainly wouldn’t be as happy and healthy as she is today without all of the love and prayer and support you all have given her in her short 3 years on this earth! She’s got so many more to come 🥰

08/27/2024

We had a scheduled post-op echo at Dayton Children’s yesterday. Journey did GREAT! But.. the echo results were not as great. Her cardiologist informed me that at her initial post-op echo, while she was still on the operating table, they could see some remaining muscle bundling. At this echo, where everything is healed and much clearer, she saw the muscle bundling and said it has the potential to grow over time and result in another open heart surgery.
The muscle bundling is a secondary defect caused by her original, main and repaired defect (DORV). It can/will cause her heart not to grow and cause it to harden which, over time, will lead to heart failure.
It’s nothing imminent and could take years and years if it even does grow. But yesterday’s echo wasn’t the “all clear” we were hoping for. Luckily though, we go back in our normal 6-months time frame!

08/04/2024

The princess got a full princess treatment today 🥹
Thank you Diane Fullerton Carter. Sis loves her new getup! ❄️💙

07/31/2024

Just got an all clear from Cardiology 🫀
Two weeks post op and sister is *perfect*.
We come back in a month for another follow up and an echo, which she would have done today had there been any concerns… but there weren’t any!
Now to find something to do for the rest of the afternoon 🤔

07/27/2024

You would NEVER know Jo was in the hospital last week recovering from open heart surgery. This girl is UNSTOPPABLE.

07/23/2024

It’s nearing 11:30pm and we’re up eating pizza in the bedroom. The hospital stay has us all thrown off in terms of energy cycles and when to sleep and be awake. But today was our first full day home and aside from her being in obvious pain at times, you’d never know she is 5-days post open heart surgery. Jo is limiting herself as she learns what she can and can’t do but she’s running around, playing, coloring and laughing and STILL REFUSING MEDS. In fact I tried twice today and ended up wearing the Lasix both times.. luckily we had laundry to do anyway. If it wasn’t for sternal and infectious disease precautions, she woulda been thrilled to be back at school today.
Tomorrow we see our GP for a follow up and we follow up with cardiology on the 31st which is a very important appointment to make sure all is well post-op.
Thank you for all of your love and support, not just these past 5 days but since she came into this world. Journey is so very loved. Love you! ♥️

07/21/2024

We’re being discharged ♥️
“I happy.”

07/21/2024

An update: They want to send us home today.. however there is a big BUT in the way. There’s a chance we could stay.. She has to go down for an xray and if her lungs aren’t looking good they’ll keep her and give her meds through her IV. She’s outright refusing meds and all the tricks we’ve tried aren’t working. And, if she gets anything she just spits it out. She’s not had her meds since they came off the IV and that is causing fluid to build up in her lungs.
I’m 50/50 on this. Halfway I want her to stay and get the IV meds because she needs them and if she doesn’t get them there’s a high chance of us being readmitted in Dayton. But I’m also ready to get her home!
Will update again after her xray.

07/21/2024

We had a good day, but a not so good evening. Jo won’t take any of her meds and is either spitting them out or just outright refusing them. She’s gotta take meds for her heart and lungs. Tomorrow is another day to try again ♥️

07/20/2024

Two steps forward and one step back- it’s still progress. Jo has taken a step backwards today and was put back on IV fluids and IV meds as she has started throwing up pretty regularly. She did have a little bit of water, milk, juice and some cereal, but when it came time to taking her meds orally that did her in and she started getting sick. She was given some extra sedation and anti nausea meds to help her stop vomiting.
But, she was taken off the oxygen and so far is doing okay without it. Her sats are in the low 90’s and we need them back up in the high 90’s. It’s still early yet but she is making progress. We will check in again with another update in the morning.
Love you ♥️

Address

Cincinnati Children's Hospital Heart Institute 3333 Burnet Avenue
Cincinnati, OH
45229

Website

https://www.cincinnatichildrens.org/patients/resources/support/ecard

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