Back to the Hospital

Rorie's IV pumps, med pumps and ventilator. 

     In the week and a half leading up to coming back to the hospital Rorie was extremely fussy. Not even I could calm her down. Usually she just hears my voice or wants me to hold her and she is completely fine and happy. When that didn't work I knew something was wrong. I had to take her to the ER twice. They turned me away saying it was gas pain. It wasn't till there was blood in her diaper we were admitted into Dornbecher's.

     Rorie was first diagnosed with NEC, its air within the intestinal wall. It can be pretty serious. Rorie had a very mild case, because I knew something was wrong so early. It was a rough 14 days of treatment. Lots of hard news to process. Hard to know that Rorie was in so much pain and there was nothing I could do. The doctors stop her feeds, because when you are diagnosed with NEC your bowels have to be treated and rest 10-14 days. If any of you know Rorie very well she is the most feisty, opinionated, strong willed 3 month old you will ever meet! She is a fighter!

     The doctors managed her pain with morphine which she soon became use to, so that did not help with pain for long. She was given a medicine to just help keep her calm because we got to the point we didn't know if she was in pain or it was just agitation with everyone wanting to poke and prodding at her. Either way something was bothering her and was not comfortable. Someone said, "She was having morphine withdraws." There was no great explanation for what was wrong with my little girl.

     At one point a doctor had to tell me that I need to keep in the back of my mind if Rorie doesn't improve soon and get better, that she may not make it. That was the hardest thing for me to here. My husband called me about an hour after I had gotten that news. I never have cried so hard. The thought of losing my first child, Rorie my precious daughter. I couldn't grasp it, I didn't want to. I had to get out of the room so I could breath. I walked down to the end of the hallway and sat there for a while. Then I came back to the room got in the shower and cried, I don't know how long I was in there crying, but I looked down at the floor of the shower and there was laying Rorie's baby shampoo. Smack dab in the center the bottle said, "No more tears." I stopped crying and picked the bottle up and said to myself, "No more tears." I knew Rorie wasn't going to die. She is to tough and stubborn, and come way to far to give up. God wouldn't take her away from me.

     Treatment went on, some days were better then others. Rorie still wasn't improving like she should have though. One day it got to the point were she couldn't calm down so she was so stressed, it became hard for her to breath. Doctors came, gave her oxygen. I was scared. I wasn't sure what to think or do. A decision was made to take her to the PICU. She could have closer and better care  there. She continued to have a hard time breathing. She was intubated and she had pneumonia. I was glad the doctors finally found something wrong! Something she could be treated for! I was relieved.

     Brandon arrived at the hospital a little while after and we just held each other and watched Rorie sleep. She is our world. We love her, and wouldn't trade her for any healthy baby in the world. With all the health problems she has, she is still the most perfect Rorie I could ask for.

     Rorie having a breathing tube put in was hard but she could breath now, she was calm. This gave her team of doctors time to think and run many different test. All the test results came back good. Nothing out of the ordinary. Rorie is a mystery as most of her doctors say. She never has the usual symptoms that come with the problems she is diagnosed with. Rorie had NEC first. Which is usually in preemie babies are in a extreme amount of pain, bellies are hard, red and distended, there is blood in the stools, most babies stop stooling. Rorie wasn't a preemie, she is 3 months old now, almost 4. Her belly was not hard, red nor distended. There was no blood in her stool until the day we were admitted into OHSU.  She was treated with the strongest antibiotics out there. Then she was diagnosed with pneumonia. It just didn't make sense. With the breathing tube she was sedated in a way so she would be in pain or try and rip the tube out herself. Which she did a day after it was placed. That about gave me a heart attack, and made me immediately sick. They upped her dose of sedation medicine of course after that.     Now, five days later she is still being treated with antibiotics. No feeds, the breathing tube came our today around noon! YAY!Soon as that tube came out my girl was so calm and smiling at momma!

     We were transferred up to the  main PEDS floor. I thought we were on our way home. Rorie was still extremely fussy, but consolable. Rorie has always been a fussy baby, I have always had to hold her 24/7 even when I was sleeping. The first four months of her life I slept sitting up on our couch holding her. (It was amazing once I slept in my own bed again for the first time.) Then one morning she was laying in her crib at the hospital and she looked like she was staring at the computer in the room. She start screaming for no reason that I was aware of. I got up and held her. She was looking at me she seemed to be fine, all of the sudden her eyes locked to the right and she didn't move I couldn't get her attention at all. I hit the emergency call button. A couple nurses came in and observed and tried to get her to make some kind of movement or even if she was conscious. Doctor's were paged. She was having seizures. A EEG was done she was having seizures back to back. A medicine called Keppra was started, it took only a few hours to realize it was working. She seemed like a total different baby! It was amazing! She was sleeping on her own, for long periods of time! It was mind blowing how much she had changed with just one little dose of medicine!

     Neurology told me she could have been having seizures since birth. That was hard to hear and I wish I would have caught on to them sooner. I was just glad she is feeling better now. We had a MRI the next day. To see if her brain was ok. I didn't get results for a long time. It was very hard to wait. The MRI showed her brain was smaller than it should be and she had several little blood clots. That was even harder to hear. That meant because the way her heart functions. She can't pump enough oxygenated blood to her brain for it to grow and develop. The blood clots were also due to her heart. Because hers isn't like yours and mine, she has no way to filter out blood clots, so they traveled to her brain.

     Two days later after I learned how to give her shots and all of her new medications. We were on our way home. Four long weeks of being in the hospital and after a lot of unknowns, tests and lots of waiting, we finally figured things out and we were coming home.