Sunny Days

  Over the weekend, Sunny got a little pukey one morning, and another morning she had more gas/bile in her belly than usual. So, they pumped the brakes on her g-tube feeds. There's no way to know if her nauseous morning was due to the feeds or if it was a reaction to the mild wean they had done before the weekend, but we took a break anyway.  That was a tad defeating, and I keep having to remind myself that this is parenting:) I feel like I learn that lesson and think that it's learned, but when this stuff makes me anxious because it's not matching what I think it will look like, I realize I need to relearn it. The timeline of when we go home or what it looks like when we do go home, doesn't matter as much as what's best for our daughter.   Her g-tube feeds were restarted on Wednesday afternoon. So far, she's tolerated the small amount but they'll continue watching her as they slowly move forward with things. They also added a probiotic & something that...

She's officially one whole (Sunny) handful of fingers! Half a year old is wild. Time is going very quickly, which seems crazy to say living in a hospital. Her getting older seems to be going quickly, but living in a place that is not our home is not.       She's been making progress and we're moving in a direction that is getting us closer and closer to going home! She's been doing well with the medication wean - she's still on a decent amount of meds, and she's technically able to go home while still on this medication, but the doctors were trying to simplify things for us and her by seeing if she'd be able to go without. Just in time for her half birthday, she was given a teeny amount of milk through the g-tube! If she continues to do well with those amounts, they'll continue to increase how much goes through the g-tube:) The goal is to be able to feed her full volume solely through the g-tube.  She's also still rocking all the ventilator things! T...

  Sunny's medical week has just been picking up where we left off last week - boring:) We're continuing to wean her of a medication, and watching for when we're able to use the g-tube for feeds. She's been making progress in both areas and slowly moving forward!  Earlier this week, Nurse Practitioner Elaine came in before rounds to see how her patient was doing. I was sitting across the room as she leaned in close to Sunny, and asked if I had any concerns of my own. As I shrugged and answered that I didn't, she lingered in her moment with Sunny for a bit. She turned and said, "When she looks into your eyes....she just seems like such an old soul. I feel like I knew her in another life....she's special." It was such a sweet thing for her to say, and it just makes us so much more grateful for these people. They're not just taking care of her because it's their job, they care for  her so well, and it's such a blessing to experience as her pare...

  Lately, her days have been boring and morning rounds don't take long at all. Boring is good.  Mostly, they've been slowly increasing her feeds while keeping an eye on the G-tube cite healing -  it's looking good & they're hoping that we'll be able to use it within the next few weeks.       They've also begun to wean one of her "chill pills" since she's been so stable. It was a drug they started her on when she was a teeny, irate bean. It worked to help calm her lil brain & it isn't a narcotic, so hopefully this wean will go better than the morphine wean.       The Pulmonary physicians were by again this week, and lowered some more of her pressure support on the ventilator. The pressure support works to keep some air present while she's exhaling, so it helps  her lungs remain open and her oxygenation levels up. While most peoples saturation goal is 100% or close to it, Sunny's goal range is 75-85% because of her heart ...

  That quote was just something one of her nurses said this week, and it made me chuckle.  This week, she finished up her IV meds & nutrition, and is back to both medications and feeds through her ND tube! They're still slowly increasing feeds back to their normal amount, while keeping an eye on her numbers & belly circumference to make sure the infection isn't coming back. Everything is still going through the ND tube as the G-tube cite continues to heal - they are still *lovingly* referring to it as "the crater"....so, that's fun for you to mentally picture:) The posse of pulmonary Doctors cam by on Tuesday and lowered some of her ventilator support because she was over -oxygenating. It was nice to have a good problem for a change, and she's been doing very well since!   Wednesday afternoon, we moved back over to 2B!! Everyone's happy to see her back, and have commented on how much she's grown in the 2.5 weeks in the CICU. She's currently...