TOF Warrior Princess Videos

Here’s the latest... the cardiology team rounded (finally lol) Now they are thinking based on the cath findings that her pulmonary hypertension is the primary issue with her and her heart right now. We need to get her lung pressure down so her heart pressures will hopefully follow suit. She will be coming home on 24/7 oxygen; she’s currently on 3 Liters and her goal sats are now 90% and above! Also, it is IMPERATIVE that we do not let her get sick. That means we are going back to her newborn ways. Any upper respiratory symptoms and we can see you via FaceTime; apologies in advance. 🤧😷🤒🙅🏻‍♀️🚫❌ We don’t care if it’s “allergies”, “you’re on antibiotics”, or “you don’t have fever” etc. (think boy in the plastic bubble) We are being referred to the Pedi pulmonologists to reassess her and compare plans with cardiology. Hopefully we will be home by Friday. 🤞🏼🤞🏼🤞🏼 This has been the scariest and emotionally exhausting 12 days I’ve had in a long time and I am so grateful that we finally have some big steps taken and progress to make at home. This has been a rollercoaster of all sorts for our family (emotionally, physically, financially, you name it) we are so grateful for all of your support; I cannot ever stress that enough. It takes a village and I love our village. We cannot thank everyone enough for all the love we have received. #tofwarriorprincess 💔💪🏼🌺

Good morning y'all. We are currently waiting to be taken down to pre op. They were thinking we would leave the room at around 11 however it is now 11:40 and we are still up here. Not 100% when the procedure will start. We still have to sign anesthesia consents. We are currently post-chlorahexadine bath numero dos; al fin. Now we are watching Coco.....again. And awaiting our summons. I will update with the latest when something happens. Until then, please send positive vibes this way. 🖤 💔💪🏼🌺 #tofwarriorprincess #zeldasEIGHTHcath

On Tuesday we got to take a wagon ride around the unit. Our awesome nurse let us out for a good 30 minutes which did Zeldy some GOOD! We played in the play room and even went and looked at the fish in the lobby. No new news as of yet except Zelda is off the nasal cannula. She had a desat episode yesterday and had a little blow by to increase her numbers. She’s watching Coco at the moment enjoying her breffus. Mama is main lining as much caffeine as humanly possible waiting on the doctors to come give us the plan. Hopefully we can come to a plan that works for ALL and we can have an awesome end to 2019; the year that will go down in history as the worst year ever lol. I’ll be updating very shortly after the docs come to give me the tell all from the conference. #imnervous #tofwarriorprincess 💪🏼💔🌺

Zelda Cath Update: We just got another phone call. Same as before. No intervention yet just measurements. They were going to focus on the right side of her heart (which is enlarged and has higher pressure) and the left pulmonary arteries so I suppose they are getting very accurate measurements before they decide what to do. Will update again after next call..... 💔💪🏼🌺

Things have been busy in the Regalado household. Sorry about the absence on the page. We have a long overdue update on our sweet Zelda. Zelda’s eating and drinking normally, she was scoped and Dr. Yuksel (ENT) said her vocal chords are working normally. She is scheduled for a heart cath on December 10th and we will have a “game plan” so to say on a timeline for future procedures. 🤩 All has been well with our sweets. She was discharged from ECI this week because she is exceeding milestones and is no longer eligible for home therapy! She is scoring in the 20+ months in most areas. She is forming her sassy personality and mimicking her big sisters. She loves to talk on her “phone”, dance, and get into anything she shouldn’t be in. She is finally WALKING!! We have a big mover y’all! 💕💕💕 We will update after the cath about Z’s surgery results and future plans. #tofwarriorprincess