The ups and downs of these last couple days.

     Okay, so Rorie had a rough spot a few days ago her O2 sats were dropping like crazy! Her lowest one was 10% not good at all and she was on a ventilator, which typically doesn't happen! Every time her O2 would drop they would have to bag her and suction her and she would recover. At first the Dr's weren't sure why she wasn't letting the vent breath for her. One Dr finally said she could have asthma, they lowered her sedation meds and changed her ventilator settings, and started more breathing treatments. She responded much better after everything was adjusted.

     Rorie also was diagnosed with very very fragile bones (I am spacing on what it is called.). Her ribs and left leg are fractured. Her bones are so brittle and weak a diaper change could have fractured her leg. Endocrinologist Dr's (hormone Dr's) are stumped on why her calcium and other levels are so out of whack out of nowhere! She has been started on a drip to help supplement. Before our last hospital admit we have never had a problem. This problem with her bones is also related to her 22q deletion. 
     Rorie has also had a fever that has been coming and going. She has no other signs of a viral infection so Infectious disease team was called in to see if they had any ideas on what could be missing. If she could have a fungus or something like that. But she doesn't have any of those symptoms to fit with a diagnoses of that sort. So that wasn't much help. 
     Hematology was also brought back into the many teams that are involved with Rorie. A few months back when Rorie had a picc line placed she formed a blood clot in her left leg. We also found  several tiny blood clots in her brain, Rorie has no way to filter out blood clots due to the anatomy of her heart. When we were admitted this last Sunday a central line was placed in her groin and she has a clot in the right leg now. Now, today another picc line was placed in her right arm, I am praying hard that we don't get another blood clot! She is not able to be on aspirin right now because of her upcoming Nissan surgery. So we seem to still be getting hit from all directions. It could be worse though. As long as the Dr's don't find any infection or signs of something other than a fever, we will proceed to have her surgery on the 18th, because she needs it that badly. 

Out of the Hospital 12hrs. Then Life flighted to Ohsu.

     Rorie was discharged from Dornbecher's on Saturday. I felt that what the hospital was doing for her, was nothing I couldn't handle at home. Where she was more comfortable. I clearly was wrong. The night was rough, Rorie was fluid overloaded, possibly going through withdraw. Things just weren't in her favor. We woke up that morning, I was headed to Salem to pick up her medications. Drove back home quickly, I was close to getting back out to my parents and I called my mom and said I would need help with Rorie. She wasn't doing well,  I need to get ready to take her back to Portland. I called up to Portland to the on call doctor and they said to get her to the nearest E.R. From my experience with hospitals it is extremely pointless and a waste of time to take her anywhere, but Ohsu. I called 911 I knew I wouldn't be able to make it even to Salem in her condition. The ambulance came, the paramedic's walked in and got her hook up to a pulse-ox and their oxygen. The told me we have two options. 1-take her in the ambulance to Salem. Or 2- life flight was on their way and they can take you to Ohsu. I said life flight. We would end up at Ohsu anyways I wanted to skip the middle man and get her to where they could help her most. The ambulance took us down to the field in front of my parents house, the helicopter landed right there! The pilot had to see if I was able to ride with her. He asked me questions told me I had to remain calm and if I didn't for any reason they would restrain me. It was very scary. While the pilot and the paramedics in the helicopter got everything ready for us to go, Rorie and I were in the ambulance with the other paramedics. We are going to do something called and "I-O" you won't like and it will be hard to see, but we have to do it. They pulled out what looked like little drill. He went on to tell me we have to drill into her leg and get into the bone marrow so we can give her a medicine to paralyze her, in case she needs to be intubated in the helicopter. I have seen lots of terrible thing done to Rorie this was by far the worst. She had no pain meds on board no sedation, no nothing! I felt terrible! Not only did they do it once, but twice! The pilot came to tell me I was able to ride in the helicopter with her. It was very surreal. Just like a movie, I couldn't believe we where gonna be life flighted. Rorie has been far worse than she was this time around, but I am glad we had that available to us. It was about 20 minutes till we arrived on the roof top of Ohsu, and a team of people waiting to get Rorie taken care of. I love this place so much the people here do there best to save everyone, I have seen some pretty amazing things and horrible things happen in this hospital. I am so grateful that we have such an amazing hospital so close, but its hard to be here. Rorie was wheeled down to the ER and pretty stable as time went on things got worse and ultimately she needed to be intubated. I felt helpless! I couldn't do anything, there were so many people in the room so many different questions. I couldn't stop crying. Everyone was telling me I needed to sit down. Every time I sat down I couldn't see what they were doing to her. It was a mess! At one point she had blood coming from her mouth. Her O2 sats where dropping. It was scary. Social workers came into try and take care of me. I think they thought I was in shock. I had done this before. It wasn't new, but it didn't make it any easier! No matter how many times a little on is rushed to a hospital or not, it is hard. I just wanted to hold Rorie's hand, but I couldn't do that. The best thing for me was to answer the questions and stay out of the way. I just wanted my eyes on her. Once she was intubated and stable I could breath a little. We were transferred to ICU. I could just see it on everyone face, they were sad we were back.

     Today, has been hard to. Rorie has been uncomfortable. I learned a little boy, Nathaniel, I was praying for on facebook was also in Dornbecher's, he turned out to be in the room right next to Rorie. He passed away earlier in the day. I didn't know him, but it still affected me. I felt so selfish. I felt fortunate. I said it could be worse for Rorie and I. It really hit me hard. I couldn't imagine how his mother and father felt. I had met his mother the night before and we talked a little. I had no idea. I gave her a hug as they left. In situations like that you don't know what to say. Its so hard to be here and watch parents lose there children, I pray to God it won't be me that loses Rorie. I have been told once

 before that we might lose her and it was the worst feeling.

 It my worst fear. I know I can't think about that or even feed that fear, but its very difficult. I think at some point that thought crosses every mothers mind. My heart goes out to Nathaniel's family. I know he is in a better place now and happier than ever. Meri was his mother's name and even though she had just lost her son and this will be the hardest day in her life, as she gave me a hug and walked away, she said she would pray for Rorie. Amazing.

Update on Rorie

     Rorie has been doing well, other than she has had a rough night she didn't sleep well. Her Nissan surgery is scheduled for this coming Tuesday, Oct 11. There was a last minute cancellation. Rorie was first in line to get it! Thank goodness she needs it bad. A Nissan is where they wrap the
stomach around the esophagus, it stops reflux (heartburn). In babies
and children like Rorie it can cause them to aspirate, causing pneumonia,
among other problems. This will hopefully prevent Rorie from getting so many pneumonia's.  After the surgery I should be able to feed her more food and different foods. Which will get her bigger for her heart surgery.
     Its also looks like Rorie will need to be on oxygen a lot more, possibly most of the day. She hasn't been maintaining her O2 levels very well on her own. This could be due to fluid still in her lungs it could get better over time as she continues to recover from this hospital stay.
   

Music is something that can inspire, heal... it washes our soul.

     Why do we listen to things over and over again? Repeat things over and over again in our lives? We (or at least me) have to do thing several times before I learn whats good for me, right, wrong, healthy. Not only to your body, but heart and mind. I remember hear a quote, I don't know who said it, but it went something like this.    

  "If you do what you have always done and never do anything different, you will never get anything different then you've always had."

     I guess I am feeling inspired tonight. I've come to realize I need to be different if I want a life I have always dreamed of. It makes complete sense. Why it takes us so long to learn, I don't know. Its painful. 

     I want a change, I wanna know who I am, what makes me, Ariana. I want someone to come up to me one day and ask me who I am and why I am/was put on this earth. I want to be able to have a good answer. I want to "leave my own tattoo" on this world. 

     SO, I am on journey to seek out the answers to those questions. I don't know what that's mean what I will have to do or anything. I am gonna keep taking one day at a time. But look back on each day. Find out what I am good at. What brings life to me. What makes me happy. Makes me wanna live and strive to be that person with the life I want or need. I want to be smart, I want to do things right, be sure about everything I do with anything in life. Know that it is right for Rorie and I. 

     Why I posted this video, I love this song, I love her voice, its beautiful! Rorie loves it too, it puts her to sleep. This song inspired me tonight. Its strange how life is. I'm learning to love it.  

October 4th 2011

     Today, we have been transferred out of the PICU and we are on the main PEDS floor. Rorie has improved, but still not at her baseline. She is requiring high-flow oxygen. Her Nissan surgery has been postponed to the 18th of October. Rorie is being fed through an NJ tube. It bypasses her stomach. Trying to prevent aspiration till her surgery. I am not sure how well it will work. Rorie has had one before and it was a nightmare. 

        Life for both me and Rorie has been rough lately. She's sick, I never know how she really feels. If she is in constant pain or not. I wish I could read her mind.

      As most of you know Brandon and I are split up. Its been hard to deal with. I have been doing my best to keep things together and I have my moments of out burst. I have lots of anger and confusion. What's right? Where do I go from here? Whats next? I have so many questions and no answers to go with them. We are a family, a family should be together. Is it wrong I feel like I just need to be me, focus on me or is that being selfish? I am overwhelmed with all that goes on. I have Rorie she full depends on me and most of the time me alone. She is my one and only priority that I feel like I really have to tend to. Everything else comes when time is right. I don't know what will happen in the future. I don't know what will happen tomorrow, but today is today and that's all I can handle. 

     

Catching up..? We will try.

     Well, its safe to say that Rorie has had lots of hospital admits. Lots of very hard ones. Draining, emotionally, physically, mentally. Scary and painful. It has been a journey to get where we are today. I have learned so much and feel like I should have my bachelors in nursing! Before I got married and had Rorie I wanted to be a NICU nurse. I have always had a love for babies. Now that I have experienced it, I am not sure its what I would want to do. I know I would be good at it. I can empathize with others. Tell them that there is a faint light at the end of the tunnel. One day at a time, that light gets a little brighter. Maybe my heart will change.
     I have so many emotions towards...well, everything now. My passion for life would be the biggest, second would be patients. As each day goes by I realize why God gave Rorie to me with all her strange imperfections that are perfect in my eyes. God gave her to me to teach me. Soften me, make me listen, have trust, believe that everything will be alright. When I found out I was pregnant I pictured this perfect blissful pregnancy, a easy labor and delivery, a wonderful bonding experience, bring my child to the perfect home and have a healthy newborn. Instead I had a rough pregnancy, which revealed heart syndrome(God works mysteriously). Labor was easy only due to the fact that I was so scared and determined to have her without a C-section and waiting as long as possible before getting an epidural. I don't think I could register the pain. I was to worried about her. I didn't have her immediately laid on my chest when she was born she was swept away. I didn't get to bond with my daughter. I was so scared she wouldn't know who I was. If I loved her. It killed me. We didn't get to bring her home till she was almost 3 weeks old and she was far from healthy. Those 3 weeks were some of the hardest ones I will ever have to go through. I didn't feel like I was doing my job as a mother. I couldn't hold her every time she cried. I couldn't rock her to sleep. I could kiss her whenever I wanted. I could whisper in her ear every moment, "I love you, Rorie."

     Writing this brings back a lot of emotions. I cherish those days, but glad they are behind us. This past year has been so challenging. I want this blog to help me, help others, have it for Rorie to look back on, have it for me to look back on a read and re-read it over and over again. I don't wanna forget all the special and amazing moments, even the terrible ones I don't want to forget them. I figured now while we are in the hospital is a better time then ever to write. Write about the past, the future, right now. I hope someday I can be an inspiration to someone somewhere for whatever reason.

Still trying to figure out this whole blog thing...

So, I have noticed I posted the same blog a couple times. I am trying to figure out how to edit and all of that good stuff still. Sorry!

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.