A last minute trip to the Disney concert ♥️
You would NEVER know Jo was in the hospital last week recovering from open heart surgery. This girl is UNSTOPPABLE.
Babycam.
Def need your sound on for this 😆
Who knew all she needed was a plastic bag (supervised of course!)?! Journey is as happy as can be right now 😆
She is also THRIVING 🙌🏽
Sis was seen by her GI team on Monday and weighed in at 15lbs 12.5oz!!! Sister has gained a quarter pound a week for the last 6 weeks! GO JOURNEY GO!! She busted into the 15th percentile for her weight when at one time she wasn’t even on the chart.
Her feeds were changed around a bit but without much luck. Too much too fast and she hurled half of each feed on Tuesday & Wednesday. I think I’ve found the right balance now. We’ve also seen speech therapy a few times recently and Journey is making HUGE strides in eating, but we still need to get her drinking a lot of her calories. Her feeds will stay her prescribed formula but her bottles for meal times and practice get to have flavors and other things mixed in with regular formula. Her prescription milk is NASSTYYYYY 😂😂
She’s doing so well and is certainly feeling your love and support. Thank you so much for your continued prayers and well wishes!
Here comes the sun ☀️
She is the sun 💛
🔈you definitely want the sound on for this🔈
Sis had her 6mo check up on Friday. I can’t believe she is 6 months old! She has an adjusted developmental age that is delayed to about 4.5 months due to spending 34 days intubated and 3 months in a hospital bed unable to “be”. But! Her adjusted age is perfect because it makes her exactly where she needs to be!
Journey has 2 teeth with THREE MORE working!
She’s almost double her birthweight, which she should hit by her 5mo adjusted age, which is exactly where she should be!
She’s up to almost 14 lbs and has grown 6 inches since she was born! What???!!!
Babe has started making consonant sounds and I’m pretty sure her first word will be “Bubba.”
Finally, feeding wise: she’s skipping the bottle and we’re trying out a cup! She doesn’t like to get milk from a nipple but she definitely likes her food and definitely likes to suckle. So, the next step for us with her milk is to go for a cup! She has started to taste some solids (ice cream was her very first! And last night she gnawed on a pizza crust for a bit!).
She’s got near full head control and is starting to sit up on her own! Since she is delayed, but not from a medical standpoint, more of just a circumstantial standpoint, she’ll be starting some in home Help Me Grow therapy to get her all caught up! She doesn’t need much, but she needs just a little bit more than what I can do!
Thank you for all of your continued love and support!!
Everyone who comes in here says this is the best room in the whole hospital and they wish they could just stay. They’ve said it feels like they’re on break in here or that when they come in here they feel relaxed and comfortable. People have done double takes in the CI and everyone has remarked about her healing corner. Not only this, but it smells like serenity and motivation in here thanks to a dear friend (I can’t tag from this page, but you know who you are @Becky!).
A lot of healing and growing has been done in here these last 12 weeks, and not just with baby Journey 🙏🏽❤️🩹✨
🥰 Baby giggles 🥰
36 hours till surgery prep really begins!!
I am bias (properly so) but every single person who comes in to our room or meets this girl for the first time they say, “oh my gosh she really is the cutest baby in this hospital.” 😭 She smiles at everyone, even as they’re drawing her blood or messing with her otherwise, as they stand over her in their yellow gowns with their blue gloves and masks on. She can’t see their smile, but she certainly smiles for them. She is an embodiment of joy. 🥰
Time to play Guess What Journey is Watching.
💁🏻♀️👰🏻♀️ 📺
Bonus: TONS of smiles 😁
She is so funny about what actually catches her eye to the tv. All of the typical kids stuff can be on and she’ll be content but likely fall asleep looking at something else. Say Yes to the Dress? Or what she’s watching now, the Olympic opening ceremonies keep her focus 😅
No real updates yet. She has nothing going in an IV this morning, it was all taken off around 6a. She’s started throwing up again but it’s all related to coughing and is mucus and not feeds. ENT was in around 6:40a and have canceled her procedure for next week and are urging her cardiac surgeon to do her repair at the end of next week, pushing for sooner rather than later. From a pulmonary standpoint she is on 3L of o2, which went back up from 2L overnight and since then her RoR has decreased and she’s not pulling as much. Neither one of us got more than a few minutes of sleep here and there so I’m hoping for some good naps for her today! We have a birthday party here at the hospital for Kingston this evening that her lil self needs to be awake for; Child Life is going to Skype her in to the party since she can’t come down!
#chd #chdawareness #chdwarrior #olympics #journey #babygirl #warrior #princess
✨ Happy baby ✨
So we moved today. We were kicked out of the CICU this afternoon and moved down to the overflow in the PICU; a new baby needed our room more than we did. Journey is still under the care of the cardiac team but is on her way to leaving the hospital! She is scheduled to have another MLB (the scope to check her airway surgery site) and then we’re busting out and coming home before her heart repair. They’ve found a great mix of diuretics to keep her edema at bay and today she weaned fully off of her dex (narcotic sedative) and her high flow oxygen. We’re still not fully out of these woods yet though. They removed her PICC line two days ago and she still went febrile yesterday. However she’s currently gone 24+ hours without a fever, nothing positive in her cultures, and has cleared her ultrasounds (still waiting on the most recent one to be read. Results should come in tonight). We think the PICC is what was causing the fevers (common) and she’s only improved since it’s removal.
There’s a chance that we go back up to the CICU before we leave, but we’re not being moved to the floor to finish her wait time, we are heading home! She has grown and is weighing in at 4.58k, or 10 lbs 1 ounce, and is 22.5” long now. She came in at barely 8lbs and just about 21”. We’re ready to keep taking these little steps on our way to the BIG day! ❤️🩹😻
