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.

My first blog.

     So first, let me explain why I am starting a blog then I will tell you about "Our Journey".
     For the past few weeks, my daughter Rorie has been in Dornbecher's Children Hospital. I have been reading some of the blogs other mother have started, and I thought I would too. Since I love to write.
     Lets start from the beginning. My husband Brandon and I met back in September of 2009. Not very long ago, but a lot has happen!
We met right before I turn nineteen. He was working in Colorado and I was taking classes at Chemeketa Community College. He came back for a visit and we met through a mutual friend. I wasn't impressed at first, but it didn't take long for me to fall in absolute love with him.  We had our long distance relationship, it was rough. We told each other,
"If we can get through this, we can get through anything."

and we did we made it, we got married December 29, 2009. We were married in our town courthouse. Nothing "special" just close family and friends. Its was our wedding so it was special to us. It was a day where we said,
"I do." to each other.
In my husbands words, "Now I am stuck with ya."
He loved and loves me with all his heart. It snowed on our wedding day that was amazing. It was the only day it snowed that year (and stuck). We celebrated with family and had dinner. Since it was snowing roads were shut down and we couldn't go to the beach like we planned for our honeymoon. So we slept in a twin size bed in my husbands mothers house. Least we were close, but not romantic at all! Its a night to laugh about now.
     A few days later I was packed up and leaving for Colorado with him. I always wanted to get out of town and experience somewhere new. Far away even. Boy, did I get my wish. Over 1200 miles from home in a little town called, Phippsburg. It had a post office hair salon in one and a farm/ranch supply store. Oh, and a hotel. It was quit a shock to me. I adjusted though. I missed my family a ton! Which was very unlike me. I was independent, didn't need anyone, did everything on my own. In the short time we lived in Colorado, I learned a lot, I needed family and how to compromise.

13weeks

     We lived there a little over three months, until we found out I was pregnant. On April 2, 2010 I took a test and there it was a BIG pink plus sign. It was positive. I was shocked! I was excited! I had always wanted kids! So did Brandon. I remember telling him through a txt message. I had to wait all day for him to get it, because he didn't have service at work. He walked through the front door in his dirty work clothes, soaked to the bone, and he had the biggest grin on his face I had ever seen! He was so happy!
    One week later we were packing up all our stuff and getting ready to come back home. Thats when the hormones came! That was a tsunami inside me!  I was about 9 weeks along. I remember loading up my Jeep with a couple boxes. The weather was cold so a lot of "stuff "didn't work on my car. I popped the hatch open and it didn't stay open on its own so I flung it open really quick slide under with the boxes threw them in, I thought I was in the clear, and then, "WHACK!" I turned around to quick the hatch door was falling and it hit me in the head. I walked inside holding my head crying. Brandon asking what happened, I explained crying hysterically. He was trying not to laugh at me. It wasn't that it even hurt that bad. Yes, it hurt, but not for me to cry the way I was. The worst part was 2 hours later I was still crying and I couldn't stop. I finally called my mom. She was having a hard time not laughing at me too. I eventually calmed down.
    A couple days later we were back in Oregon! Home, sweet home. I was so happy to see my family and friends I had missed them so much. I missed Colorado in a way too, not the place, but the people I met. The community. I missed the great friends I made in such a short period of time. No judgment, they didn't care who I was or where I came from. They welcomed Brandon and I like they had know us our whole lives.
     Life was great being back home. Brandon found a job quick. Summer time was here and I was just starting to show my baby bump. It was a hot summer. Most likely cause I had the extra body growing in me. I had a ton a fun that summer Brandon's little brother Haden graduated high school. Brandon and a couple of his friends raced in some mud drags. The boys kayaked a bunch. Fished way too much and we went to Brown's Camp. A place you can go 4wheeling. I was 18 weeks along by then and it was a really rough weekend on me. I go sick. Ended up going to the ER to get some IV fluids and blood drawn. The next day I had an ultra sound to make sure everything was "okay". I was close to my 20 week check up so they decide to do that early, everything was looking, great measuring the fluid, size of the baby, gender(she was a GIRL)! Checking out all the different organs, then the ultra sound tech got to Rorie's heart. She looked at it many different ways, pressed hard on my belly to get different positions. She called in one of the Doctor's there to look. I asked,
"Is everything okay?"
She said, "Yes we are just trying to look at something it looks a little strange on the screen, it could just be how the baby is laying."
After they looked for awhile that doctor called in another doctor, I knew something was wrong my heart started to raced, I felt like I was going to suffocate right there. I was laying there on the table screaming on the inside and think, "What is WRONG! Someone tell me now!"
I didn't here anything till I went to my primary care doctor. I had papers to give him from the ultra sound tech. They were in an envelope. They were crazy if they didn't think I wouldn't open it and look to see what it said. "Ventricular Septal Defect, (VSD)" Is what it said, I quickly pulled my phone out and Google what it was. It said it was a hole it in the heart. And it is the most common heart defect in babies. Most time the hole will seal itself as the baby grows. "Whoo!" a sigh of relief some what anyways. My doctor explained to me what it meant and what it meant for the upcoming months of my pregnancy. My Dr. wanted to send me to OHSU Hospital in Portland to get a Fetal Echo Cardiogram. Basically it is a ultra sound to look just at the heart. I had my first appointment with Dr. Kelly. He was a nice man. He took lots of pictures, always had a poker face, could never tell if his look meant good or bad. Still can't. He looked through all the pictures he had, left the room to evaluated them with another part of his team and he came back sat down in the middle of the room and said,
"Well there is two things going on for Rorie." He started to draw a picture of a heart. And he explained that Rorie's arteries were malposed and only went to the right side of her heart. When one is suppose to go to the left and one the right. He went on to tell me, "It is fixable." and went through the different possible procedures.
     I walked out of that room out of my body, I was absent, I couldn't process. I was in shock. I couldn't cry, I could do anything but shake my head yes or no. I got home and told Brandon. We were scared. I was think, "Why us? This happens to older couples, couples that have had lots of other children, not young just married, having their first baby couples. NOT US."
Stress set in for both of us. A time we should have came together we were falling a part. It was hard and it got even harder. Rest of my pregnancy went on with lots of check ups, lots of echo's, lots of everything! It was a question of how will she be when she is born? Will she handle a natural birth? Will she need surgery right away? All the answers I got back were mostly, "We don't know."
That was the hardest thing to hear, was the unknown. As I got closer to the end of my pregnancy things were always changing, when I would be induced, or if I even had to be. The decision was made that I would go to 39 weeks and be induced then if I didn't go into labor by then on my own.
     I was two weeks away from being induced, I had a check up at OHSU. I had an ultra sound everything was looking good the computer was taking measurements to see how much Rorie had grown. The results came back, I was taken to a different room to meet with one of the possible doctors that would be there to deliver Rorie. He came in sat down on his stool introduced himself and said,
"I have some bad news the baby has not grown since your last ultra sound from the month before, and we need to get her out tonight."
I couldn't tell you what my faced looked like cause I didn't even know what I was feeling. "Ok." I said
He left the room and made plans for me to be induced. The tears hit me, I was so scared, not scared for my life or pain but for my daughter. I didn't know what was going to happen, no one did. My dad drove me home to pack a bag and wait for Brandon to get home from work. We drove back up to the hospital, I got all checked in hooked up to the monitors, put an IV in. I was so scared. Soon a doctor cam in and started the whole inducing process. My nurse for the night came in, she was great! She came in and told me how it was gonna be.

"This is my baby tonight, we are gonna get her here safe and sound. Its gonna be awesome. Your gonna meet your baby girl today and its gonna be a good day!" she said. She was so up beat and ready to go which was probably what I needed at that time. Labor progressed all night. I was expecting this terrible thing. You always here these terrible stories about women and there child birth experience. My went very smooth and easy. Rorie Akayla was born November 18. She weighed 4lbs. 6oz. Blue eyes and little bit of blonde hair. She was beautiful! I only got to see her for a split second before they wisped her out of the room. Brandon was speechless, I could only cry. It was about 20 mins later they brought her in all bundled up and laid her in my arms for just a minute. She was gorgeous. She was ours. She was my daughter. I was her mommy. It was amazing!

"Hello Rorie, its momma." Her blue eyes were just staring at me taking it all it. She was precious! More perfect than I had imagined.
She was taken out of my arms to the NICU. Brandon followed her there. I was not able to leave the room yet. The best moment and one of the most beautiful things just happened to me but I was so sad. I wanted my daughter to be with me in my arms. Have her bond with Brandon and I. I was transfered to upstairs.  I didn't get to see Rorie again till late that night. She was so small! All swaddled up in her little bed, content happy, peacefully sleeping. You would have never known anything was wrong with her.

On our way home.

     We spent a grueling two weeks in the NICU. It was very hard for me. I just want her home, to be with my husband. Be a family, a mother like I was suppose to be to her. Eventually we came home a it was amazing!
     The last few months have been pretty uneventful and Rorie has done great! There was rough a couple nights. But, thats when I kept saying she is home and thats better then being in the hospital. Even if she was screaming all night. I thanked God that he brought us home.