Sunny Days

  After reintubation, rest was everyone's top priority for her. They've been watching numbers, rotating her in her bed like a cute & hairy rotisserie chicken, adjusting meds & letting her be.  Sunny's right lung still shows a decent amount of fluid, so they've changed one of her respiratory therapies,  & are still giving her a diuretic to help drain things.   This week, the doctor on service wanted to try giving her milk again. Last time, it was for a day and the milk basically just sat. So, they stopped the feed,  put in a tube to drain her stomach, watched her belly size for distension, and put her on antibiotics to fight the bad bacteria that could kill parts of her intestines.  SO. Let's hope this round goes better!  They began the feeding - very slowly - Monday.  Worried that another Necrotizing Enterocolitis scare could delay her tracheostomy (scheduled for Friday), I asked Dr Stout my questions and concerns. She answered, a...

  During Monday mornings rounds, Dr Ratajczak asked the young Dr why we shouldn't try extubation tomorrow. Since Sunny had been doing well during the cpap trials, he suggested just doing it.  He said something like the longer the tube is in, the more her brain will get used to not breathing. And then how some kids when extubated have issues right away & some have issues in a day or so - the only way we'll know is if we try.  I had thought they might not try anything until after the Holidays, & was nervous but hopeful for her.  She HAD been doing well during the trials, and I'm sure he breathing tube is uncomfortable.   During the first extubation attempt, they had us leave & called us to let us know how it went and that we could come back.  This time, maybe because she'd done it before, they let us sit in her room with them.  Around 2pm is when they began. They finished & stood back to watch her numbers, abdomin and nasal canula pl...

  Hi friends!  Over the weekend, they extended her CPAP trial from 60mins, to 90 mins, to 120mins. So far, she's been doing very well during those! Other than that, she's just been resting & snuggling:) She's still having some irritability, understandably so.  While the breathing tube, blood tests, cold stethoscopes, oral care, physical therapy, repositioning etc etc are all for her own good, I'm sure it's all prettyyyyyy annoying😬. I personally think she's been easier to settle, but it still worries me when they have to occasionally give her extra medicine to calm her down.   BUT. Because her CPAP trials have been going so smoothly, that doctors are planning to attempt one more extubation TODAY! If it fails again, they won't try another and will just plan for a tracheostomy next & then begin plans for her corrective heart surgery as well.  We're hopeful and nervous.  We know her care will never be simple, but life without a tracheostomy/venti...

  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...

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...

 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...