Our Journey

I'm Gonna Keep Going.

2012-07-06T21:44:00.000-07:00

Wow, its been a long time since I have written or typed...feels strange and good. Rorie has been on my mind a lot lately. Its been almost 8 months since she passed. I can't believe its been that long. Its been so hard. Getting easier but still hard. Rorie is always brought up one way or another in my day. Whether someone asks me what my tattoos say,or if a baby I know is sick, or just seeing a baby in general, or a pregnant woman. I think of my beautiful Rorie and how much I miss her and still wish she was here with me. I wonder how big she would be, if her eyes would still be blue, or she would be rolling over, tons of things run through my mind.
I run into people everyday that ask me how I am doing. I say, "okay." Some people are shocked by how well I am doing, probably think I am cold-hearted. To be honest the only thing that keeps me going is knowing she's not in pain anymore and in a better place. I don't have to watch her being poked and have test run on her. I miss comforting her, having her in my arms, kissing her, when I am up at night and I can't sleep I feel like I should be taking care of her.
The last eight months I have moved forward a few steps, but also have fallen a few times. I can't remember all that's happened, I feel like I have lost parts of my brain that keep track of my memory, guess my brain is working hard to hold on to the ones I have of Rorie and doesn't want to remember anything else. Parts of me are gone, not sure if they will ever return. Life has changed, a lot. I have lost everything that I have known, First it was Rorie, and then I slowly lost everything else. Brandon and I are getting a divorce. Some of you already know that. I think its for the better. After I lost Rorie, I lost it. I had given up before I even knew it. Our relationship had been through a lot. There wasn't enough fight in me to try anymore.
Another reason Rorie has been on my mind is because one of my dear friends little girl is in the hospital, she was shocked to learn her daughter had some very serious health issues and will be in the hospital for a long stay. My heart goes out to her and her lil baby. It kills me to know that she is going through some of the same stuff I did. Not knowing whats going to happen or what was wrong. Being scared. Knowing life is gonna change drastically, Living in a hospital is not easy. I want so badly to go and be with her and help. When I first found out I was trying so hard to think of what to say to her to comfort her, but I remembered there are no words that take away all that she is feeling. I wish I could still be there, all of my memories of being in the hospital with Rorie would run back to me. Maybe then I would know what to do. My friends family helped me a lot when I lost Rorie. Now this is my chance to help her and the family. I just wish I knew how to. I wish I could drop everything and fly to her and her daughter.

Life has changed once again for me, but hopefully this is a knew beginning of an easier life. I get to hold a few babies here and there and it makes me wish I was a mother again so badly. I know my time will come again someday. Until then I live on my memories of Rorie.

Life without Rorie...

2012-01-16T12:49:00.000-08:00

This is going to be a very hard blog. I already feel it. Tears already streaming down my face...I have to repeat out loud what I want to say.
Rorie's last hospital stay lasted 9 weeks. The longest we were ever at Doernbecher's. We got to come home Thanksgiving day. Just in time for dinner. Rorie got to taste gma's cooking. Good as always. She had a good night. Only a week after heart surgery and we were home. It was amazing. She was doing better than she ever had. I thought we had gotten past the "hard part". The first year.
Friday morning we woke up and she was still doing good. Then she start to dry heave again and I debated on whether or not to take her to the hospital. I called the Dr's and made up our minds to get medicine for her at home and just make her as comfortable as we could. The hospital wasn't going to do anything more for her than I was. We had to drive into Salem on black Friday, WONDERFUL! Not fun but, we got the medicine and got her back home. Laid her in front of the TV on her pillow and just left her be. She seemed to be more comfortable there than in my arms. I assumed in was from surgery. My Mom and gma's volunteered to babysit Rorie for awhile, so Brandon and I could go out for some time together. Brandon and I had fun. We had no idea that this would be our little girls last night here with us. If I had know I would have done anything to keep her here.
It so hard to write this. All the pain comes back. and I wanna die all over again. I want her back so much. More than anything else.
We got home that night and I picked her up and we got ready for bed and she was so tired. We said our "goodnights" and I put her in her swing. She went right to sleep. No fight, no fussing, nothing. We all went to bed. I woke up around 3 to give her a med and as far as I could tell she was still sound asleep. Then 7am came and it was time for another med. I heard her make some noise. Then she stopped. I thought maybe she had lost her binki and then got it back so she stopped. a few minutes later she did it again so I got up and walked by her and to the kitchen to get her meds. I had the TV on, so the glow was all the light I had I could tell her eyes were open. I came back into my room to give her the med and bent down and as soon as I saw her face I knew something was wrong. I picked her up and ran out to the kitchen to tell my mom to call 911. Her eyes were glazed over. They looked like they had bruises on them. She was breathing but very slow. I turned up her oxygen. But she wasn't moving, wasn't blinking. Nothing. I had never seen her like this. She wasn't responding to me. I was beginning to lose it. The paramedics got there fast. As soon they got in my room I heard my dad say she quit breathing. Than about 20 seconds later her heart stopped. They started CPR. Took her out to the ambulance. I was losing my little girl. Or maybe she was already gone. I'm not sure. The ambulance drove out to the field in front of our house and the helicopter was waiting for the word to go. I am not sure how long they tried to bring her back before they told me she was showing no signs of life. I wanted keep trying, I needed her back. After awhile longer another man came out of the ambulance and told me she was gone. They could bring Rorie back. I wanted scream, I wanted die to. I went into the ambulance to see her. All I could do is touched her head and kiss her. I always did that and she would open her eyes and look at me and I wanted that to work so badly this time. But it didn't. Nothing worked. She was really gone. Rorie, my Rorie, she was so strong and made it through so much. I don't understand. I am still mad, I am still hurt, a part of me went with her. A part me that was missing for a long time before I had her. I felt complete with Rorie, and now I'm not. After she passed I don't remember a lot. Its a blur. I was given some medication because I was so upset. I remember going to the hospital. Bits and pieces. The days leading up to her memorial I don't remember much either. I remember cutting out the birds and family. I wanted everything to be perfect. It was the last thing we were doing for Rorie. Then I felt like it was all over. I felt like after the funeral the world should end to. Why else, what else was there for me to be here for?
The funeral came. It was perfect. Lots people showed up, lots that never ever met Rorie. It was amazing. We had the newspaper do a story on her. The news was gonna do a segment, but it fell through. Thats ok. I knew Rorie had affected and impacted a lot of lives, but most of all mine. She was my everything. I would give anything to have her back.
Life stood still but went by fast to..cause before I knew it, it was almost a month she had been gone. I tried to keep busy hang out with friends. Do anything to keep my mind from thinking about Rorie and how I didn't have her to take care of anymore. I was lost without her. The past year was nothing but change all the time. I always had to adapt to her new schedule, whether it was sleep or no sleep, med changes or driving back and forth to Doernbecher's. Life was never the same. I can't adapt to life without her. The hardest thing I thought I would ever do was taking care of her. But I was wrong. the hardest thing I will ever do is trying to live without Rorie. Its still hard to imagine. I don't want to live without her.
Then I thought for a little while life was gonna change, maybe get a little easier, help with the grieving of Rorie. On December 18, a month after her birthday, I found out I was pregnant. It was gift, it had to be. What else would it be? There's no way I could be pregnant? God? Rorie? Did you have this planned for me? To help me? I was happy, and excited. I went to first Dr's appointment. I was 6 weeks. This is unbelievable! Right? I was automatically deemed to a high risk pregnancy. Until said otherwise. I was referred up to Portland for all my testing. Then last week I started to bleed, super scared, no way this is happening. My Dr sent me to an ultra sound the next day. The ultra didn't look good. The heart was large and the heartbeat slow. Another baby with problems similar to Rorie. My heart sank. My Dr told me this is probably the beginning signs of a miscarriage. For some reason if I didn't miscarry it may be better to terminate the pregnancy. Because the baby may make it to term but not be born alive or die shortly after birth. All these signs already, that this pregnancy wasn't going to be successful or a healthy baby. I was already picking out names. Thinking about how much this would help me but I had to keep reminding myself, this wasn't Rorie. This baby would be nothing like Rorie. It needed to be healthy. Sometimes I would catch myself wishing for twins, so I could keep busy. I don't know what I would do with a child that was perfectly normal. I needed some kind of challenge. Then here was my challenge. Is this baby going to make it?
Three days went by before I lost the baby. Felt like I was losing Rorie all over again. I felt like I almost took it harder. The friends and family that knew were very supportive. After this past year and beginning of this one. So many of you that have read my post and updates are so supportive and remind me I can keep going. Its not easy and many times throughout the day I wanna give up. So many tell me I am strong, and to a point I am strong and then I feel numb. I am not sure what feeling is stronger. I asked God to take it easy on me this year. Haha, I don't feel like its gotten easier at all. Not one bit. I don't know whats gonna happen with me this next year. All I want is to be a mother. But I don't know if God thinks I am ready for that again. Considering He took my second baby to be with Him and Rorie. I ask Rorie to take care of him or her for me. She a big sister now. She will be a great one.
I was thinking of names for this baby and I already had a boy named picked out it was the girl name I was really struggled with. I asked friends and family to help me with the name. I wanted Rorie as the middle name if it was a girl. As a first name that I picked over all the others was Neveah Rorie Burbank. Heaven spelled backwards. Was she a girl? She went to heaven with her sister Rorie.
This year I need to seek out what I am gonna do. Work, go to school, travel, or maybe I will be a mom soon again, Who knows? God does, but he doesn't like to share His plans before they happen, lately He likes to drop them on me and say, "You get through it." Tough love.
I honestly didn't think I would lose another child. I didn't think ever. It probably means Brandon or I is a carrier of 22q. We will find out. I know I am meant to be a mom. Its in me, just dormant for now...
There isn't a day or minute I am not reminded of Rorie, whether its a picture or a song she loved me to sing along with on the radio, or just a memory I have. I know lots of people lose there children, and its the worst thing that can ever happen. I wouldn't want anyone to experience it. I know lots of people know my pain. If you are one of those that are blessed and have your children with you or grown up now remember you are truly blessed. Everyone is put through challenges in life, if you are still breathing and around the ones you love, its a blessing. Sickness, pain, sadness, everything passes and something new comes. Something better comes, something to take away all the bad. It may be a person it may be something else. I am trying to remember that. That this pain I am feeling will fade, I still complain though, its natural. At the end of the day I am sad still but glad too. I know I will see Rorie again. I just gotta wait.While I am waiting I know good things will happen.
Here I am crying and its beginning to snow. I know my little girl(s) and/or boy is watching over Brandon and I. I know God is. The snow makes me smile, good things happened last year when it snowed.

Time Flys..

2011-11-16T23:16:00.000-08:00

Wow, its been over a month since I have posted a blog. I have had a lack of creativity and urge to write...
So much has happened, I am not sure where to begin...Obviously we didn't stay home long a little over 36 hrs. I called up to Doernbecher's to tell them what was going on with Rorie and they said take her to the ER. I got her ready to drive to Salem ER. We were almost there and then traffic started slowing down and I just could see a big, long line of cars and flashing lights at the very front. There was an accident. I pulled into the gas station and called 911. The beginning of another admit into the hospital. Wonderful. One of the hardest things is being teased with going back and forth between the hospital and home so much. Which has happened a lot lately. I think I have finally learned to never unpack. D.B. is more of a home to us at times then our "real home".
This time we were admitted because Rorie was fluid overloaded so it caused respiratory issues. Finally what I have been dreading, the problem was her heart. Her heart is no longer protecting her lungs as well as it once was. The pulmonary artery is letting to much blood flow to her lungs. The diuretics weren't doing a well enough job to keep fluid off her lungs either, so therefore made it very difficult for her to breath.
I have been getting so tired of going back and forth to the hospital. I couldn't handle anymore "I don't knows" to my questions or not getting things done that needed to be and not having the doctors and nurses listen to me. So, I got the idea of looking into second opinions, more options, more brains, better resources. Rorie's aunt Melissa helped me with this and she got CHOP involved. Children's Hospital of Philadelphia. Answer to prayer! They have a center for 22q deletion. Which is what Rorie has. Well just telling the doctor's here a Doernbecher's, made them kick into gear too and I started getting answers. I guess you just have to make people feel a little threatened to make them listen. :) Rorie was presented that Friday at a conference for upcoming heart surgeries. I got news that she would be having surgery in a few weeks at the first opening they could find. Rorie was finally stable and we were transferred to one of the main peds floor to wait till she could have surgery. I was anxious for her surgery but so not ready for it at the same time. It was hard to imagine she would be having her chest opened up for the first time. This was going to be her first major surgery. I could grasp it was really going to happen. I wanted to not think about it, but the more I tried to forget it, the more it got brought up and I couldn't stop thinking about it.
A few days later Rorie began dry heaving. First thing I thought was she wasn't handling her feeds. So I stopped them and vented her(burped her through her feeding tube, it take the formula and air out do nothing is in her belly). This didn't stop it. So maybe withdraw? The Dr's order some IV drugs to see if it would help, and it did but it didn't last long. This went on for about a day and a half and then she just stopped. She continued to be fussy hard to comfort. Then one morning Rorie's respiratory rate had dropped really low and we were just watching her really close, her O2 levels remained good. I was watching TV and out of the corner of my eye I saw Rorie under the blanket shaking it looked like. I got up and looked at her and she was breathing very strange, like when a little kid gets really upset and they cry so hard they do the, "ah ah ah" breathing. That's what it looked like but Rorie was sleeping her eyes were closed. I called the nurse in. She pulled the blankets off Rorie, her eyes opened but she wasn't moving otherwise. I tried to get her attention, but nothing. Her eyes wouldn't move her body wasn't either. She was having a seizure. This one was one of the worse ones I have seen her have. It took her a few minutes to snap out of it. Than she went right back to sleep.
"Ugh, not this again." I said. Another problem, we don't need. Why does this always happen? Neurology was consulted. They weren't to worry because she could have lost her Keppra dose(seizure med). The following day Rorie was doing really great and the speech and language team came to see Rorie and they gave the okay for her to eat baby food! With a SPOON! I was doubtful that she would eat from a spoon because she had hated it before. Boy, did Rorie surprise me! She took bite after bite of baby food. I am so proud of her! I couldn't believe it. It of course wore her out and she had a good snooze after that.
November 10th, Dr. Kelly, Rorie's cardiologist came to see us and tell me that Rorie surgery had finally been scheduled for Wednesday the 16th. After he left the room, tears just poured from my eyes, It took me back to the day her first told me about Rorie's heart condition. I felt like I had been hit by a train. I thought to myself, "We have been through SO much this year, and now just two days before Rorie's first birthday she would be having open heart surgery." It never ends... I am on a ride with a blind fold and only half a seat belt, I am hanging on for dear life! This is so hard. I feel weak, alone, scared and helpless. I don't know whats ahead for us, all I know is we have gotten over everything so far.
On Monday, Rorie started to dry heave again and it was worse this time far worse. The Dr's gave her meds that she had gotten the week before when she was dry heaving. But this time it wasn't working. Not even touching it. First the reason she was doing it was because she was constipated, then it was withdraw or fluid overload, or she had an upset tummy, then it was from her nissan surgery! I knew the Dr's were all wrong I knew it wasn't any of those reason. I knew it was worse and something was really wrong, and I couldn't do anything! I had to yell at a Dr before one finally told me and said, "we don't know." I hate that answer, hate it! There had to be something they could do. My daughter is dry heaving to the point were she can barely take a breath in between and I am told there is nothing that can be done to help her. Not okay! By this point I am crying and trying to comfort Rorie as best as I could, held her, laid in bed with her anything! I was desperate for her to feel better. One Dr, he was a man, he comes in with Rorie's nurse and asked how Rorie was doing. I said, "Not any better." Then he asked me if I thought she was in pain. Shocked by this answer I snapped back at him, "Of course she is! Wouldn't you be in pain if you were dry heaving all day and could stop? I am sure you would. That was a dumb question!" Finally I got through to someone, whether it was him or someone else they changed doses and gave her more meds. It helped but still didn't stop it. I had been in tears those two first days and only had gotten two hours of sleep. I was an emotional wreck and grumpy. At least Rorie was a bit more comfortable. She could rest some-what anyways. I crawled in the bed with her and laid next to her, her eyes were open. She was so tired and exhausted but she just couldn't let herself sleep. I ran my fingers through her hair and she just looked at me. I went to go give her a kiss and I put my hand on her chest, she was burning up! I had never felt her so hot! I had touched her legs, arms and forehead, but they were all cool. I called then nurse and she got a rectal temp, 104.9°F! Dr's were paged, this was all such a shock. The nurses had been doing under the arm temps and she was always fine, they were false readings. How long has she had this temp? I don't remember the last time I touched her chest or stomach or if she felt this hot. I felt so bad. Blood and urine cultures were taken right away and ice-packs were put on her.
Then here we are today, the day Rorie was suppose to have surgery. It was postponed obviously. The blood and urine cultures have not grown anything, so we have no explanation for why she had such a high fever. Her dry heaving has also stopped. I am praying they still look for the reason of why this all happened. We don't need it to happen again. We are suppose to get an MRI of her brain, it could possibly be the problem. If her brain is swollen and pressing against something that's causing all this. I hope its not. Rorie is such a mystery to everyone here. Somehow we have managed to be a miracle and a disaster all in one.
These few days leading up to her birthday makes me think about so much, about how she came into this world. That will be a whole other blog...
But I keep telling myself I can't wait till all these hard days are all just a faint memory. That's all I want them to be is a memory. I want to live a good life with Rorie out of the hospital. I hope we get there soon. Love you Rorie. Love Momma.

The ups and downs of these last couple days.

2011-10-14T21:57:00.000-07:00

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.

2011-10-10T23:25:00.000-07:00

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

2011-10-07T12:26:00.000-07:00

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.

2011-10-06T23:29:00.000-07:00

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

2011-10-04T14:14:00.000-07:00

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.

2011-10-04T02:02:00.000-07:00

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...

2011-10-03T23:05:00.001-07:00

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

2011-10-03T15:24:00.000-07:00

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.

2011-03-14T21:40:00.001-07:00

     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.