On April 24 Olivia had her first surgery, Nissen G/Tube,rotation of her intestine and an appendectomy. The surgery went very well but as they were bringing her to us she decided to stop breathing for an instant which gave all the nurses and docs a big scare because of her heart condition. When they brought her upstairs to the PICU she was on oxygen, pale as a ghost and had a big rolled sheet under her shoulders to open her airway (made her look very uncomfortable) and was very hard to see. Being a strong baby as she is Livi got herself back off the oxygen in a couple of days. For the rest of the recovery she was put on level 7 which is the nephrology floor so they could get her electrolytes back to normal before she got home. During her stay there things got worse. The nephro team, being so big on her nutrition forgot about her health conditions and filled her up with IV fluids so much to the point of having the chest x-ray look like two big clouds instead of lungs in her little body. I was at home that night since Peter did the night shift so at first I didn't know what was going on until I called to check up on both of them and I got the answer that no mother wants to hear;" Dajana, I think we're loosing her. She can hardly breathe and she looks blue... " We both thought we were living a nightmare. Peter was there next to her crib, by himself, trying to comfort her. The Kidney doctor, Dr. Bunchman enters the room and as he was looking at him said: "I'm worried about her Peter. I think what I'm seeing here is heart failure..." Can you imagine what was going through Peter's head at that instance... screaming probably wouldn't have done justice to what he was feeling right there an then. Not even minutes later, Olivia's cardiologist, Dr. Lee entered the room and said "I don't believe what we're seeing here is heart failure. What I see is that Olivia has been overloaded with fluids. What a relief that was. It seemed like 20 doctors swarmed to her rescue by putting her in PI CU (again) and giving her some Lasics to get some of her extra fluids out. I got there right before they transferred her upstairs and seeing her in agony and breathing for her life was one of the hardest moments we've experienced so far. I don't know how Peter did it all night long. As we waited for them to take her to PI CU, Peter and I looked at each other with tears in our eyes, listening to the monitors loudly beeping and Peter's dad gently holding Olivia's hand, promising her that if she got better, Grandpa would take her for a ride in his big green truck.
This experience has cost us more heartache and ups and downs that her NI CU stay. She was there until May 5-Th, Tuesday and rushed back to ER on Monday and admitted again on May 13-Th for another week. We can definitely say that she has spend more time in the hospital that at home since she was born. Scary but it's always rewarding bringing her home and getting to cuddle with her again, giving her baths that she loves so much and cover her with kisses without having to worry about all the wires that she was connected to and the loud monitors that beep continuously. Livi has been home for almost a week now and she is doing much better. She is on continues feeding(non-stop drip feeding through a pomp in her G/Tube all day)and seem to tolerate that fine. I don't think we can do it without all the prayers that are said for us everyday. Olivia is God's miracle and she shows that to us everyday through her precious life.
Livi got her labs drown again today and they are finally normal (as normal as they can be) thanks to Dr. Steinke which is working very hard for her. If you ask us how we're feeling right now despite all the different meds and feeding receipes that change every week to keep her stable,we would say:"Life is good... our little miracle is finally home, again, and we're trying to take one day at a time." Thanks for all your prayers.
