Somebunny Likes Being Home




 We had a lot of firsts this week! 

First walk outside without the security of our hospital posse, first time eating out with Sunny(once we got all her gear packed up, we thought we ought to make it worth it and walked to dinner), first time taking her in the car(on the way to meet her pediatrician for the first time), and first time meeting her dog sistas!

It's weird getting used to doing all these things on our own, trusting our minds and education to remember everything we're supposed to do/have on hand. 

Things still feel chaotic and we haven't fully unpacked from living in DE for 10 months, but for right now, this is all I got:)


We'd appreciate prayers for
- Filling the in-home nursing needs. We're still trying to figure out what(& who) to help us best care for Sunny.
- General health for the Good household

Love, 
Chris, Alyssa & Sunny


Sister nap 

You know she's the most relaxed when her tongue is out for sleeps. 

This girl loves windows and looking at the trees in the sky.

She "stomped her arms" for 70% of her appointment - which is her way of telling us she wants to be sleeping & we're not helping. & Then she finally just konk

She's not small with, but all of her equipment makes for quite the uphill workout.

Baby's first brewery/dining out:)

So sassy 

She seriously LOVES looking up at the trees

This was her 3rd outfit that day. 

Sisters napping again featuring Sunny's suction as Brumby's headrest.



Unamused:)


Meeting Killarney 

Meeting Brumby - who seemed to more intrigued & welcoming.

Naps in the sunshine

First morning stoop sit🍂


Comments

Post a Comment

Popular posts from this blog

3 Weeks of Sunshine

Image
 Hi friends! My sister suggested this as a way people can check-in to stay updated when ya want, so we're giving it a try:)  We lovvvve how much love there is for this little girl, and we SO appreciate alllllllllll the prayers & support. We FEEL it.   Sunny is still breathing via intubation, she's on some medications that are allowing her heart to function but also have a known side effect of apnea. Before another extubation is attempted,  Dr's are wanting to insert a stent so that she's able to come off of those meds & then see if the apnea continues or not.  Currently,  she's scheduled for the stent Monday morning - first case🙏🏻 So for this weekend,  she's chilling.  They just upped her dosing as she's a growing lady💪🏻. She's an excellent communicator, and let's us & her nurses know when she needs a diaper change or suction.  She loves butt pats & having her hair combed by her Papa, and she lovvvves holding hands wi...
Read more

"Sunny doesn't listen to any of the rules"

Image
Monday at 11:50am, Dr George called to let us know they'd finished up inserting the stent, everything went well🎉 & they were working on getting her back in her room! She started off by saying,  "Sunny doesn't listen to any of the rules." I laughed & told her that's how she's been living her life. To which she replied,  "Yeah! She didn't listen to the chromosonal rules,  she didn't listen to the stent rules..." Sunny slept off the procedure for most of the rest of the day.  The Dr on this week said they'll most likely attempt to resume her "c-pap" breathing trials Today. She had previously done really well with those, but more recently was having more spells of apnea. We're hoping those will improve since taking her off of the heart meds - if it does improve, they'll likely attempt one more extubation.     It's true though. She's never doing the thing expected of her & we love that able about our girl...
Read more

Pockets of Sunshine

Image
  This week has been pretty relaxed for Sunny! She's resting up from Monday,  and we've adjusted some meds & are working on finding the perfect concoction for her.   Lately, she's been a little more irritable. Which we don't mind her sassy self, but it often raises her heart rate a bit too high and her blood oxygen levels get low.  Or,  she gets real feisty(again, we don't hate her fire) and starts to thrash. Making her breathing tube lose, requiring the respiratory therapy team to have to re-tape it. And that requires deeper sedation for the process, which could mess with her breathing.  They've had to re-tape her tube everyday for the last 4 days😬💪🏻 She's restarted her "c-pap" breathing trials,  & those have been going pretty well! Nurse Kate, whom we've had for the last 2 days & have again today,  said she thinks she's been doing really well overall🧡 Two of our favorite labor & delivery Nurses, as well as the Dr who d...
Read more