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Kayla And Pack (@artisticvoid) Instagram photos and videos
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Look who's HOME! After 33 days in the NICU, Levi was given the all clear by all the amazing doctors on his case to go home! We still have months of therapies and doctor's visits ahead, but man, it's sure good to be home. Haddie was incredibly excited when she met Levi, and Lydia busted out crying for 30 minutes ( definitely my emotional child). 😅
Happy 4 weeks little man! We're still in the nicu, but this little guy is doing so well!
After a couple of rocky days recovering from surgery, Levi had a great day today. ❤️ And for the first time ever his chubby little face is tube free!
Little man did great overnight! He's obviously still on the vent, but off of the sedative and pain meds. They're trying to wean him off the vent but he's being lazy about taking his own breaths. ( Why do it if a machine does it for you? 😅) Overall he's done amazingly well and I'm one proud momma. ❤️
Levi had his g-tube and nissen surgery today. Everything went well! He's sedated and on fentanyl for pain, and will be on a ventalator for the next 24-48 hours. The next few days will be about his recovery and pain management, and training me in taking care of his g-tube so he can go home. If everything goes as planned, we should be heading home in a week to 10 days. 🤞
Snuggle time. ❤️
Lots to update on Levi, He's been diagnosed with Nephrogenic Diabetes Insipidus, which is why his sodium levels have been so high, and his temperature has been hard to regulate. Basically, his Kidneys flush out any fluid that comes into his body, and this makes him dehydrated and throws his electrolytes way out of whack. This is a lifelong thing, there really is no cure, and it's a little bit more serious when they're babies because they can get dehydrated so fast, but if we stay on top of it with medication and have routine lab work done, he should be fine. He's been on medication for it for 2 days now and he's much more stable! this diagnosis has nothing to do with anything else he's dealing with, just his kidney function, but I'm so glad they caught it! He will be going home with a G-tube for feeding, as well as a nissen fundoplication. His surgery will take place on August 6th for both of those. His swallow study done today showed that he is asperating about half of what he swallows and his o2 stats plummet for about 2 hours after he has anything by mouth. The oral therapist really thinks that it's a muscular issue, ( not ruling out neuro just yet) and that over time we can strengthen his muscles to be able to swallow safely. She's recommending we don't try any fluids by mouth except for occasionally milk dipped pacis for 2-3 months and just work on therapy. It's going to be a slow process, but there is hope! We're looking at lots of trips to Dallas in the next few months, for developmental, oral, and physical therapy, as well as checkups on his g-tube and nissen. But hopefully after his surgery on the 6th, if he's recovering well, we can go home within a week to 10 days. 🤞
Finally got Mr. Grumpy alseep and they're going to come make him mad again soon. #niculife 😆. Also, happy 2 weeks little man. ❤️
Levi has been about the same for a few days. His iv was taken out on Saturday because his foot was getting swollen, and his sodium levels were a "high normal" so they left it out to see if he'd regulate it himself, but they're going up again, so he might have to get an iv put back in. Other than that, he needs to maintain his temp a little better and just keep up with the physical therapy on his arms and hands, and his oral therapy. ( He's doing well with his PT, but not progressing as much as they'd like with his OT) They still don't really know what's going on, I just keep on getting "there is obviously something going on with his body, we just don't know what " from every doctor. 🤷♀️