u/Kay_MavsMomma3109

Maverick has been home for almost 3 months now. We had one little scare the week after he came home his really bad reflux scared this momma into thinking he was having seizures. LUCKILY, they weren’t seizures but the EEG showed that he is at higher risk for having them. Where we live there is a program called strong start for babies like Maverick who were severely premature. Other things allow others to qualify but him arriving at 24wks cleared him through. They help with tracking and helping with Mavs developmental/motor delays , PT OT all the works due to his hydrocephalus and prematurity . Baby boy has been trying to sit up on his own from laying on the boppy; he’s slowly starting to track with eyes and looks for us when we talk. He’s such a happy chunky baby , you could never tell what he’s been through! All my NICUWarriors, if your still in the storm you have a thousand and one umbrellas to protect you , and those who are out the storm.. don’t forget your rain boots for if it does ever start to rain again ! 💜

We are finally home ! We were discharged last Thursday, we’re almost at a week of being home. He has to come home on oxygen, just a quarter liter. I’ve been head over hills and tired lol. These feeds every three hours is kicking my butt , but I love it lol. My fellow NICU parents, we are strong , we have strong little ones . The NICU journey isn’t a simple road — it’s filled with checkpoints, victories, setbacks, and moments that test our strength. But every baby writes their own story and follows their own timeline. No matter how long the path may feel, we’ll all reach the finish line in our babies’ own perfect time.❤️

My little Tootie would’ve been coming home this weekend , BUT ROP is keeping in for another week for a follow up on 5/5. They did an ECHO earlier this week and seen that his right side of his heart showed some increase in pressure ; and he has an ASD. They will treat the echo Monday to discuss their plan for him X because if he ends up needing to keep eye surgery they want this situation with his heart to be dealt with . I’m terrified . They weaned him off his diuretic but had to put him back on because of his tachypnea which led to his PO intake regressing. He went from taking about 73% by mouth which qualified him to come home on NG, but it’s now dropped down to almost under 30%. This is the part that’s nerve wrecking .. we see the finish line. But it seems like someone’s moving that flag further and further away 😟. He’s almost 10 pounds tho; went from 1 pound 10 oz to not 10 pounds 🥹. Gotta take the wins and praise them when you can .