Friday, September 30, 2011

Answered Prayers

Hello friends! Dominic is doing really reallly great! Every single day he has three hours of therapy a day. Some speech, some physical therapy, occupational therapy, and then he gets to go to school. He is slowly getting movement back in all of his limbs and his speech is just like before we left.

I'm still not sure how long we will be here, but I will have a good idea on Tuesday. We could do so many different things from going home, to an out-patient facility in Eugene.

But, I have a plan. When I find out when I will be home, I would like to have a get together. Everyone is invited!! This get together isn't a home coming for us. Infact, it's thank you for every single person who has sent off a prayer for Dominic and our family.

I would love to let off a cloud of paper lanterns with answered prayers written on them and sent off to the heavens as a thank you! (If you haven't seen Tangled yet, go see it! You'll get the idea)

So consider yourself formally invited! Time and Place to be determined since we are still in the dark about what's happening next! We are still looking for a way to make these lanterns ourselves, but if we can't, I have found a site that sells them for $1.50. (with all the fixin's) Click Here  to see them.

I hope you all can make it! Thank you everyone for all of your love and support! You will never know how much we all appreciate it!


Wednesday, September 28, 2011

Practicing - Respect

If you ever think you're the best at something, you might as well just quit. I have learned from watching people that no matter what you are involved it, whether it be sports, or an art or even parenting, as soon as you think you're the best, it's all over.

I think that doctors have it right. They practice medicine. They are always striving to get better and learn more. There is never a final answer because things are forever changing. Life isn't math. There isn't one answer to each problem.

Of course this is all so elementary right?! But why is it that people don't Practice- Parenthood????? Why is it that people either do things the same for their child's entire life, or they don't do anything at all??? Just because your child knows how to talk, doesn't mean you are done teaching them words or how to use them! Just because your child knows how to walk, doesn't mean that they know to look around them and be aware while walking.

I know that I'm a strict parent. {Just ask my kids} But if any of you know my kids... they are amazing. My children are always polite, they are on their best behavior... always, and they have fun! None of them will tell you that life is boring or living with me is horrible. They know I love them and that's why I teach them the things that I do. (Shoot, at my house, my kids do their own laundry, they do the dishes, clean their rooms. Than includes vacuuming and dusting! And they are all under 10 years old. They also play every single sport they want AND they have amazing grades)..............(not to brag or anything hehe)

Now with all of that said, my older kids, Toren and Alaina came up last weekend to visit Dude. They were all so excited to see each other. Toren and Laina loved pushing Dominic in his new "race chair" and showing him how to do things again. We laughed and had a great time! We got to play catch in the courtyard and eat dinner together. It was wonderful. The funny thing is.... We were all walking down the hall and there were these two little boys running around in the hospital. Toren stopped me and said "Whitney, you would KILL us if we acted like that!!" I laughed and asked him why I would do that and he said, "look at them, they are being annoying!". IT'S WORKING!

It felt so good to show them, without them even knowing it, why I am the way that I am. It was even more fun to see them recognize it themselves without any help.

All of our doctors and nurses always compliment me on how polite Dominic is. He says please and thank you, excuse me and I'm sorry no matter what. He is such a good boy! The thing that bothers me is.... why is it that people think that just because they are in a circumstance that isn't exactly favorable, they can get away with being expectant, obnoxious or plain rude! When I say that Dominic uses his manners, I mean it. He tells every single nurse, doctor, volunteer, and cna thank you no matter what it is that they came in for. When the lab techs came in to take his blood, he thanks them for helping him feel better, right after he screams for them to stop! At one point, he was a brat for a cna who was trying to take his blood pressure. When she couldn't and walked out of the room he said "I'm sorry Mommy, I want to tell her sorry too" and so we called her back in the room and he apologized.

The point that I'm trying to make is this, I am trying my hardest to Practice Parenting and it isn't always easy no matter what; however, I have really noticed my practicing actually taking effect. I don't have to cue my kids to say anything. They use their manners the first time! Now on to the next lesson.... Whatever that might be.

I am so thankful for my parents for treating me this way also. Thanks for teaching me how to be a successful adult. Whatever you did, it worked. I have so many people who love and care about me and my son. Thanks Mom for allowing us to grow up in a safe environment. For forcing us to take care of ourselves and learning how to do chores. Thanks for teaching me right from wrong and how to take care of my things. Thank you Dad for working so hard. Thank you for all of your sacrifices to give our family everything that we had. You two did a great job with Tia and I and it shows through Dominic, Toren and Alaina. -oh and Tia, thanks for always being my best friend. No matter what argument we have ever gotten into, I always knew that you had my back no matter what! (isn't it funny how you can say whatever you want about your family, good or bad, but as soon as someone else does... it's go time!) I might possibly have the best family there is.

The funny thing is this: I'm 26 years old, Tia is 24. We both live on our own and are getting married. Our parents are still Practicing Parenthood. They still look out for us. Even funnier, we still ask our parents permission for things lol! Not in a "can I go to the movies" kind of way, but we obviously ask for their advice and we take it for the most part. (even if I might throw a tantrum sometimes about it)

Maybe it's like professional sports players. They work hard every single day practicing the sport that they are already one of the best at, and yet, they keep doing it! Even after they retire, they still play and practice, or better yet -they coach!! (Grandparents are the best at "coaching" aren't they?!)

At the end of the day, the most important job, is parenting. It's also the most evolving and the least paying. So please, for your kids' sake, don't stop practicing! Don't stop teaching, and don't stop loving.


Monday, September 26, 2011


T-shirts will be in around October 5th!!!
 I'm so excited I can't contain myself. 
Thanks to everyone who is pre ordering!!

I will keep you all updated as I know more


Friday, September 23, 2011

Connecting with People is the best Medicine

Living in a hospital, I don't let a lot of things get to me. When the docs and nurses tell me {potentially} bad news, I don't freak out. I don't over analyse when they give me {things to look for}. So when I meet hypochondriacs or parents who subconsciously look for things wrong with their kids, it really gets to me. One reason being: Why on Earth would you EVER want this life for you and your child??? I mean, yeah most kids are afraid of shots, but for the most part they either grow out of it, or learn how to deal with it when there are needles. Dominic not only screams BLOODY MURDER, but he has night terrors about people and needles and there's nothing fun about driving to 300 miles for a doctors appointment. The second being: Docs and nurses can't always tell a hypochondriac apart from a concerned parent. Therefore, when we do voice our concerns, they don't always get addressed. This leads me to my story.

It was Saturday night. I remembered one of the cardiologists reminding me of things to look for after surgery, and what to do if they happen to occur. One of the signs to look for was a swelling face and a swollen belly. Of course part of me was trying to just over look it also. Maybe I'm seeing things. Maybe he has just been crying a lot.... maybe I should still say something. I told the nurse that his face looked puffy to me. (even though I tried my hardest to deny it. I even mentioned out loud that he has eaten salty foods, and has been crying a lot... bla bla bla) So the nurse said that we would chart his in-put and out-put and see where that leads us. Good idea!! She didn't seem too worried about it, so I was trying not to be also. The next morning, we got a new nurse. She mentioned to me that the puffiness was relayed in report and that she was going to continue to watch him. At about 10:30am I called the nurse back in to ask if cardiology had been called. She told me no. She also said that on Sundays, the docs kind of mosey in at whatever time, and when he got there, she would let him know, and it would be his job to do what needed to be done, whether that meant calling cardiology or whatever.  I kept track of every drop of fluid that went through that little boy. I was determined to get this extra fluid off of him. I was determined to see that this was just me, freaking out over nothing. (Those of you who know me, know that when it comes to Dominic's health, I don't usually freak out over anything) At noon, I paged the nurse for some Tylenol, because Dude was uncomfortable and he really needed to take a nap. Our nurse didn't get to us until 45 minutes later. 45 MINUTES!! I realized right then and there that I had to do more than what I was doing to get some answers.

I immediately got online and emailed Dr. Armsby's team. I let them know what Julie (the Nurse Practitioner for Cardiology) had told me and what I was seeing. I also told them that I felt as if no one thought that it was important enough to get a hold of anyone for me so I needed some help.

He finally laid down for a nap at 1:30, and so did Aaron and I. We all slept a good two hours and it was beautiful; EXCEPT for one thing, Dominic looked even puffier to me. You know, sometimes in a hospital, things get a little hectic. I get that. Shoot, I'm there more and longer than any of those nurses are. I see and have seen day in and day out how sometimes those poor nurses will have all 5 of their patients buzzing at them all at once. I get it, and I pride myself for being understanding. If I don't need anything, I'm not going to bother you, however, 5 o'clock rolled around and Dominic's meds were an hour late. The floor was quiet. I buzzed and told the nurse manager what was going on and my nurse walked in and said, "Oh, you read my mind! I was just bringing these in here". I think Aaron saw the steam coming out of my ears because I was getting more and more frustrated. I then asked her if maybe we had missed the doctor when we were sleeping and she said no, he didn't come in today.
---Okay, my opinion is this: I understand that your expertise ISN'T cardiology. I understand that there is no therapy on Sunday, therefore you probably don't need to come in every single week. HOWEVER, if you have a concerned mom on the unit, you need to be there, even if it's just to tell her that it's going to be okay.

Remember how I told you about the wonderful Dr. Armsby?? Well, I am so greatful for her for so many reasons, and this is one of them. She is {involved} with her patients and their families. She gave me her email address before I left with a note that said, if I needed anything, even just to talk, to please use this. I dug it out of my purse and I emailed her. I was scared that he was just going to get looked over and to please tell me if I'm being ridiculous but, as of now, I'm freaking out. She got back to me very quickly and told me that she just thought that we needed to play around with his meds, but would like to see him tomorrow. She would have her scheduling nurse call me in the morning.

I'm sure my nurse could tell that I was angry, because she came back in with a new order of meds and a scale. She said she had called the doc {finally} and he uped Dominic's diuretics. He also said that we should just start weighing Dude to get a better idea of what's going on. So we did. He was up by over 2 kilograms. That's over 5 lbs in 4 days!!!!!!!
-in my head I'm saying {HELLO!!! Dominic hasn't gained weight for over 3 years and all of a sudden he is gaining 5 lbs a week?!?!?! RED FLAG RED FLAG!}

Every time I looked at him, I seemed to notice something different. I thought, gosh, either I really need some sleep, or something is wrong. Before we went to bed that night, I noticed that it was hard for Dude to breath. He acted like his chest was heavy and when I asked him to cough, he couldn't. I told the nurse. We went to bed.

Monday morning finally rolls around and I got dude ready for "school" or physical therapy. He is the happiest kid. He's laughing and carrying on, but there's still something there. He's still swollen. He's still struggling to breath. I sent him down with a water bottle to keep things moving, but I was afraid it wasn't enough. At around 10:45 am I got a call from Cardiology. It was Jean, the scheduling nurse. Dr. Armsby wanted to see us that day at noon. Of course I asked the question, are you responding to me, or did the docs call you..... she was responding to me. No one had called Doernbecher yet. YET. It had been two days of me asking question after question, voicing concern after concern and they STILL hadn't called!

We got there and had a ton of tests to do. Chest Xray was first, then labs, an echo cardiogram and then we would meet with Laurie Armsby. Well when we got to the echo, I had some familiar faces in the room. I had the amazing Emilio, who had taken care of us before we left, and our echo tech named Whitney. Dominic was so uncomfortable that she called in the doctor who was going to be reading the echo to come in and try it out. He was also a familiar face from the peds ICU. As he was looking at the echo, I was asking lots of questions. The doctor filled me in on what he was looking at and showed me a big pocket where fluid was collecting. The options were, put in chest tubes and let it drain, or drastically change his diuretics and see where it takes us. When Laurie caught wind of what was  going on, she admitted us instead of seeing us in clinic, and we had an appointment the next day for chest tubes. Of course there was a chance that he would pee out enough that we wouldn't need them, but the chances were slim.

The next day, Dominic went into the cath lab, and she "tapped" his lungs. (Basically, just pulled the fluid out) She got a good amount of fluid. 300cc's from the right lung (that's about 10oz's) and 27cc's from the left (about 1 oz). He was drowning in his own body! I wasn't freaking out for no reason.

Now today is Thursday and we are still here at Doernbecher. While we will need to get back to Emanuel for rehab therapy, but the cardiologists here want to monitor him a little longer. His lungs haven't quit collecting fluid just yet, but they aren't surprised either. They have increased diuretics and if over the weekend things don't get better, back to the cath lab we will go.

As far as how this ties into hypochondriac parents goes; if it weren't for them, those docs might have taken my worries seriously. They might have actually thought that when I said I was nervous, something was wrong.

Dude has the best attitude! He can't stop laughing and making fun of people. (He get's that from his Papa, not me at all!) He is eating like a champ, even better than before surgery. His therapy progress is unbelievable, he's almost sitting up on his own! He is learning how to control his left arm and leg, and as soon as his brain will let him, the right will come as well. He got a splint for his right arm today and it's already helping what I call "stroke arm". (A lot of people who have a stroke will have an arm that looks like his) As for me, I'm a little more paranoid for the time being. Mostly because I had a decent scare.

The best medical advice I could give anyone is this: Build a relationship with your staff! Befriend your nurses and your doctors. Talk with them about things other than medical things. I'll tell you what, if and when you have a choice to help someone, you are more likely going to help someone you care about before someone you consider a job. Thank goodness I learned that early on. If I didn't have the relationship I do with my team, I wouldn't be here now. Shoot, I probably wouldn't have felt comfortable emailing them when I did.

Everything is going to be okay! We are over coming just one more bump in our road. We can't wait to come home, but better yet, tomorrow we get to see Toren, Alaina, and Aaron. We are both SO excited. Tia is coming up too. :) We are going to make it through this yet again and no one is going to stop us or even hold us back. Thank you God for everything you have taught us.


Tuesday, September 20, 2011

I have gifts!

So I have some amazing friends at Legionnaire Apparel and they have helped me with something pretty amazing. People have been asking me if there is any way they can help, and I have finally come up with something. You see, I will be out of work for some time (length to be announced) but I'm not the kind of person that will ask for money. As I have already mentioned, my mom went over my head and opened a donation account in Dominic's name, fully aware that if I weren't 300 miles away, I would give her a verbal whip-lash. (Evergreen Federal Bank under Dominic Fitzgerald) So I sat, and I thought, and with a little help from my extended family here in Oregon, we came up with this.
This T-shirt is for sale and all of the proceeds will go toward our family. They are on sale for $15.00 and are  in Men's and Women's sizes... pretty much whatever size you may need. If you might be interested, please email me. {} OR if you are in Grants Pass, go into A Show of Hands Xcetra and my mom will help you out. I will be placing orders on Saturday September 24, 2011. Thank you SO much Joe Moxley for being so great! If you want to see everything that Legionnaire has to offer, check them out at

Please include your name, address, and phone number in your email. If you are an out of town fan, I will try and get set up to accept your donations. Thank you guys so much for all of your love and support. We are eternally thankful!

We also have had rubber bracelets made. They are white and in red lettering it says "Dominic My Love". They will be $3.00. 


Saturday, September 17, 2011

Missing You

I am laying here while Dominic sleeps, just thinking about my life. Thinking about how things have turned out, what could have been different. What if after high school, I would have moved to New York to dance. What if, I would have went to college. What if I never would have gone on that date... what if. What would my life be like if Dominic and I have never had to go through all of this? Would I be as happy as all of those pictures of all of my friends with their healthy babies?

There have been many times that I have looked at my life and looked at the lives of others around me and thought, what did I do to deserve this? Why does my baby have to go through all of this?

It's funny because when I first met Aaron, he worked at a youth prison. (he was great at it) He really bonded with those boys, and I have heard some of the best stories from those times. One story that always stuck with me was when he would ask them to do something, and they did a wonderful job, he would tell them how bad they messed up because now, he knew that they could do it.

That's just it. That was the answer that I have looked for. The reason God has chosen Dude and me to go through all of this, is simply because I was the one that "messed up" and showed Him that I could. All of the times I cried myself to sleep and still went about my day. All of the times that I felt alone. And all of the times that people expected me to give up. All of those times that felt so dark... I kept going. The funny thing is, Dominic didn't have a chance to prove that he could do it. He was born with this, he will live with this forever, and yet, he has been the strongest. He has been the one who has fought his way through every single life threatening tragedy. He has lived his little life as if he was just like everyone else.

Now look at him. Every single day, he makes more and more progress. It's like this phase is nothing to him. Yes he gets frustrated when his body isn't working with his brain, but he laughs every single day. He has something smart-ass to say during every conversation. He gets so excited when something new happens, even if it's the littlest thing. Dominic is so amazing.

Even more than all of that, I have met an amazing man that didn't run away when I told him about us. He wasn't scared when I told him that our medical journey wasn't over. In fact, he took Dominic and in and treats him just like his own two kids. It's hard enough to deal with all of this with my own flesh and blood... but to chose this life is unbelievable. Finding someone even remotely decent is hard when you're a single mom, let alone to a child with medical issues.

In short, no matter how many times I look back on my life and think about what could be different, the facts are this. I'm one lucky girl. I have an amazing man that I get to marry. I have an amazing miracle child who teaches me more about life every single day. I have two wonderful step children that I wouldn't know what to do without. I have a family who raised me to be the way I am and I whole bunch of family that I'm not even related to who has also helped to mold me. I may have seen some really hard times, but I wouldn't have changed any of it. Because of those difficulties, I have been able to rejoice in the wonderful things that I have been given also.

Dominic my love, thank you so much for keeping me on my toes. You fed yourself a french fry today, and you would have thought that buzz lightyear came to the hospital and fed it to you! Watching you and your excitement for such little things in life brings more excitement to mine than I could ever explain. I love you, my little angel. Thank you so much for everything you have taught me. Thank you, thank you, thank you!


Wednesday, September 14, 2011


The last couple of days have so jam packed busy that it's almost 10pm and I'm finally able to sit down and get my thoughts down. I won't lie, I was getting a little bit discouraged being in the hospital. Every single session, he would get more and more upset. He was just getting worse and worse. They call this "icu psychosis", but since we have tried everything to make him comfortable and the screaming didn't stop... we weren't (or at least I wasn't) sure if he just wasn't going to get better.

Then came the good news... they were sending us outta there!! The wonderful doctors at Doernbecher gave us a free pass for the night before they were sending us to Legacy Emanuel for rehab. [and remember that amazing doc that I introduced you to the other day? Dr. Armsby? Well she got Dude a little gift. An Ipod shuffle with a little something written on the back] I got all packed up, and Dude listened to his music. He was finally comfortable. He just sat in his wagon. Quiet. We finally got home (to Ronald McDonald) and I was exhausted. we laid on the bed together just relaxing for about 30 mins waiting for our wonderful friend Timmy [aka Tiffany] to come pick us up. Of course we both dozed off for a few until Timmy called to tell us she was here. Dude started acting uncomfortable again and so Timmy and I started trying everything we had. He didn't want to lay down, or sit up, or drink anything... but he did want some chips. He started smiling.... and then laughing...

and then....

it happened....

He. Started. TALKING!!!! 

First he said chip.. then mom... and dad... and by the end of the bag of chips he would say anything we asked him to!! He even started giving me attitude and "copy catting" everything I would say! And then would very proudly laugh at himself. :) I thought I was so tired that I was seeing things.. and hearing things. And then I saw the tears in Timmy's eyes and I knew that it was real.

This morning, it didn't stop. In fact, it got even better. He started shaking his head for yes and no. Then he started saying yes or no when I would ask him questions. When he talked to Papa this morning he said an entire sentance in response to something that was said to him. I couldn't be happier. ICU psychosis it is. He isn't talking all of the time, and sometimes he can be so frusterated that nothing comes out at all, but every day gets better and better.

This morning we made it to Legacy Emanuel. We got to meet his new therapists and they are all wonderful. He got fitted for his own "my size" wheel chair and he kinda looks adorable in it. He isn't a big fan just yet, but I'm sure it will come. He is still obsessed with the music that Dr. Armsby gave him. It is sometimes the only thing that settles him down.

Tomorrow we start our rigorous schedule of lots of physical therapy, occupational therapy and school. {YEP!! School!!} and more therapy! Hopefully we get home soon and we can finish up therapy there. I miss my bed. I miss my kids and my dogs... and I miss my husband to be. Things are definitely going to be different but I'm ready for the challenge.

I'm still working on my "support my blog" button, so bare with me. It should be up and running soon. Thank you so much for you love and support. We also have an account open at Evergreen Federal in Grants Pass.

You all have been such a huge part to our healing. Thank you for being here for us.


Monday, September 12, 2011

I would like to introduce you toooooooo

Hello everyone, I would like to introduce you to someone very special to me. She has worked many many hours to keep my little man alive. This woman is so very dear to my heart, and I know that she feels the same way about my son. Since all of you care so much about us, I thought you should know the woman behind all of the magic.

Head Shot of Laurie Armsby
Transplantation, Pediatrics, Pediatric Cardiology, Cardiology
Special Interests:
Cardiology (Pediatric), Advanced Heart Failure and Cardiac Transplantation
Accepting Patients:
"Pediatric Cardiology is the most rewarding field of medicine I can imagine.  The ability to help a child by providing the very best quality of medical care, support a family through a difficult time, and teach the next generation of doctors to do the same is a great pleasure and privilege."


Dr. Armsby specializes in caring for children with heart problems. She has advanced training in interventional cardiology (procedures which treat heart disorders and in many cases replaces heart surgery) and heart transplantation.
Before coming to OHSU, Dr. Armsby worked as an interventional cardiologist and heart transplant specialist at one of the busiest Children’s Hospitals in the country. She moved to Oregon to spend more time with her husband, a pediatrician, and her three children. Despite finding a greater opportunity to balance her work and life here in Oregon, she remains committed to providing the children she cares for with the highest quality of care.

So Laurie, if you ever read this, thank you so much from the bottom of my heart. If it weren't for you, my beautiful little boy wouldn't be here today. I owe you everything! Thank you SO much for caring so much about us. Thank you so much for your loving heart and your free spirit. There is no one in this world like you and I thank God every single day that you came to work here when you did. All of your hard work has paid off and we are so lucky and thankful to have you. (I don't think I can say that enough) We love you!! 

Sunday, September 11, 2011

God Bless America

People are going to be remembering this day forever, just like we remember the civil war, the signing of the constitution, and Independence day. We all have our opinions about what happened during  9/11, some positive, some negative; but the fact of the matter is this: in times of struggle, this country pulls together! I have personally witnessed this, a number of times.

The First Time
I can’t remember how old I was, I think early high school, my mom came and told me that a little girl that I had babysat was just diagnosed with leukemia. She was two years old. Mom and I spread the word like rapid fire! This family was very dear to us for so many reasons. They were our friends and eventually became our family. This little girl, [Taylor] was so strong for everyone! She spent months and months in the hospital. Her mom stayed with her and her dad had to work to keep a roof over their heads. They lived in and out of the Ronald McDonald house, in the hospital, you name it. I won’t go into the specifics of her, but what happened in our community was amazing to me. This was my first taste of being a part of something much bigger than me.

Mom and I felt helpless; we didn’t know what to do to help. We knew that her mom was out of work and that they were struggling. We did the first thing that popped into our mind… CARWASH!!!!!!!! It was a Saturday, and I just remember dancing on the sidewalk with signs that said “help Taylor beat leukemia”. More than anything else, it was a blast just knowing that I was doing my part. We raised over $1,000.00 that day! People not only came and got their car washed but they parked their cars and helped! Strangers off the street picked up brushes and towels and wanted to help this little girl!! This was, to say the least, a success! Taylor’s family had no idea that we had organized such an event, and when we called her mom, she was overjoyed. Her joy didn’t even come close to what we had felt in our hearts.
The Second Time
I had just had Dominic. He has surgery at 8 days old. I had of course planned on taking off of work for maternity leave, but what I didn’t plan for was spending my whole leave 300 miles away from my home. After 5 weeks of living in the Ronald McDonald house, I called my mom crying. I didn’t know how I was going to pay my bills! She turned around and opened a donation account. Within a week, my friends and family raised us enough money to pay our bills and for me to stay without worry.
We had also been a part of the Sparrow Club. This organization is not only amazing for families like mine, but for healthy kids all around. [To learn more about the Sparrow Club, please click here.] Without the Sparrow Club, and all of the wonderful kids at South Middle School and the members of SOFCU, we wouldn’t have been able to have Dominic’s first Christmas.
This Time
My wonderful friends and family that read this every single day without fail… you have come together for me. You don’t know how tremendously soothing you are to me! Just knowing that my words mean enough to you, my son means enough to you, I mean enough to you to read this every day. It melts my heart! I have had prayer chains in our name all across the country and God is listening! He is listening and He is working! So thank you again. {I know that I say that a lot, but I mean it from the bottom of my heart}
On top of all of that, and after a long conversation with my mom, [AND without any permission of mine] she has opened a donation account in our name. As most of you know, I’m not one to ask for help, no matter how much I may need it. So, in lieu of our situation, I have humbly added a “support my blog” button.  
Dominic is doing remarkable. There have been so many wonderful things happening! In the last three days, we have been making HUGE strides. I was a little bit worried about him not wanting to eat, but then today, I took him out of his room and he ate like a CHAMP! He has been smiling and laughing a little more every day that goes by. Today he stood up {with a lot of help} for a whole 5 minutes!! It was AMAZING! After that he started to want to sit up more and more. I am such a proud mama. Thank You God!!!

Thursday, September 8, 2011


There's something empowering about smiles. Have you ever tried to be mad in a room full of happy people? Have you ever tried to do just the opposite?? 

I got a little bit of a late start today, but it was kinda nice. I walked to Doernbecher and the sun wasn't just rising.. it had risen. It was a great start to my day, and it made me feel like, today was going to be amazing. There were people walking around the halls and I noticed something strange. Not one person looked as if they were happy to be there. Not one person even had a glimpse of smile in there eyes. Later today I finally got out of the room a little bit. {dude got his middle chest tube out!!} As I was roaming the hospital gift shop, I noticed the same thing. There wasn't any laughter, or happy chit chat. There weren't even any smiling employee's. It started to bring me down a little bit.

Somebody wonderful once told me, no matter what is going on in your life, you can choose your mood. That wonderful person is the man I'm going to marry, and he's absolutely right. {it's funny how when he tells me that, I'm usually throwing some sort of fit and I don't want to hear it :)} Today it really hit home. So I did a little experiment.

Have you ever noticed that whether or not you know someone, if you look at someone walking by, that person will look right back at you. I made it a point to make eye contact with people walking by, and smile. 9 times out of 10, they smiled back at me! Then I started to notice something else... it was infectious! Quicker than the flu, people were catching my smile.

Sometimes we can get so caught up in the drama and negativity of life, that it's hard too look up and see what really matters the most. Sometimes we have to deal with things that are hard, and hurtful and are just plain not fun... and embrace those times because we wouldn't enjoy the sunshine if we didn't have any rain. Just remember not to go chasing the clouds.

Yesterday we got moved out of the ICU and onto "the floor". This is great news for several reasons.
A) the room is WAY bigger :)
B) Dominic needs less care.
C) He isn't getting bugged as often and is finally able to get some rest.

We have already made this room our home and we don't expect to leave for at least another week. After that, it's on to Emanuel for some in patient rehabilitation. I would have updated last night, however, we had so much going on, we were both exhausted. We are trying really hard to stick to our schedule to keep our sanity, but it isn't easy!

Yesterday, was a hard day for me. I had all of these fears float to the surface all at once and I couldn't help but cry. It's so hard to watch your baby struggle to move, to talk, to feel... to everything. It's also hard when you try and comfort them and your touch doesn't mean anything, when just a week ago, it was the only thing they needed. It's so hard when you can't tell if they even know where they are or who you are. Yesterday I was so filled with fear that it was so hard to see the other side. The good side. Then he showed me... yes HE SHOWED ME, that everything was going to be okay. I put the phone up to his ear so that he could talk, and he smiled a big juicy Dude grin. Then he followed my image across the room. Later on, while he was in one of his screaming fits, I just grabbed him, tubes and lines and all and just picked him up and he stopped as if to tell me, that's all he really wanted. He comforted me yesterday more than I could have ever comforted him.
Today has been more positive {but slow} progress. He got to talk to his brother and sister on the phone. The first word out of Alaina's mouth, and a tear rolled down Dominic's face. There has been so much crying,  but no tears. This was the first emotion filled cry that I have seen. It was one of the sweetest things because I could tell that he just needed to hear that she loved him and wanted him back home. Then Toren got on the line and he lost it. He misses his siblings so much! It will be such a wonderful surprise when we can get them up here to see him. He also got his middle chest tube and all of his pacer wires out today. That means that they are confident that his heart is going to be just fine and his drainage is slowing way down. As far as his heart goes, he is doing remarkable! If it were just that, we would be coming home next week. That's great news!

As far as his brain goes, we still don't know a whole lot. One step at a time. All I know is that we will be learning our way around a whole other hospital, and it's going to be an adventure! Thanks everyone for your continued support and prayers. They are working! God has a plan for us. A very beautiful plan.


Tuesday, September 6, 2011

What's Normal?

Source: via LIV on Pinterest

I have had a lot of time to read my friends blogs lately. It's so fun reading about all of the great things that they have gotten to do this summer. It's so great looking at my friends family pictures on Facebook and seeing all of their smiling faces. It just makes me wonder...

What is normal? Is normal having a strict schedule that you live by every single day? Is it flying by the seat of your pants? Is it making crafts and singing with your kids everyday, or working hard at your job to give them everything.

For us, right now, doing what we are doing... that's normal. Lots of tests. Talking in a language I hardly understand (doctor language) and watching things on my children that I never would have seen before this. [Do you know what your oxygen sats are? Do you know your childs blood pressure every 30 mins?) To us, normal isn't having birthdays as milestones (even though they are still very exciting) or each passing grade. To us we see a lot of doctors, and we have made them our friends. We know a lot of surgeries. We get to celebrate all of the things that no one thought we would be able to do! Sometimes I think when we are "normal" we take for granted all of the "normal" things.

Once we are done with this journey, we will not only have our cardiac team as our hospital family, but we have gained a whole new set of neurological family members as well. Don't forget the wonderful nurses that we have gotten so close with. This is normal to us. Roaming around the Pediatric Intensive Care Unit and feeling comfortable enough to rummage through the pantry is normal. Pushing an IV pole to get exercise is normal. This is our life and I wouldn't change most of it because without it, we would have missed out on so many wonderful things! (tell me when the last time you celebrated the fact that your child breathed on his own?!)

Do me a favor, after you get done reading this... call someone you love, look at your children, shoot look at yourself and realize the beauty in life. We have a lot to be thankful for and we have a lot of time to forget about it. Don't forget how hard we work without even knowing it. Don't forget how beautifully this machine we live in works together to give us everything around us. We are all normal. We are all beautiful.

Dominic my love, thank you for keeping perspective in my life. You are the most wonderful, beautiful part of my life. You have taught me that there just isn't room for anything other than love and forgiveness. Thank you for all you have given me and our family.



I'm holding a contest. 
you can email me, leave a comment, or post it on facebook.
are you ready for it?!?!?!

Describe Dominic in 4 words or less.
an encouraging message, quote, etc. (4 words or less)
I will reveal what the winner gets once I get some feedback. This is going to be so exciting. 

Let me paint you a picture

I know that by the sound of things, everything is going really well. Well it is, but it I am going to be very honest with you. It isn't going easy. Since his stroke, it is very hard for him to move and talk. His muscles cramp and cramp [could you imagine having a full body charlie horse?] and to top it off, he can't tell us what is wrong. For the past couple of days, all he can do is scream at the top of his lungs. His poor lips aren't forming the right words and he is so frustrated. I can't blame him. I would be kicking and screaming and yelling too! 

Well the good news is... [and there's always good news]
Today has started a new chapter. 
He got a lot of really great sleep! He slept all night last night and took a 3 hour nap today. 
The best part is...
 when he woke up, there was no screaming or kicking. 
There was no frustration, 
He ate more than we expected him to which also aides in healing.

So yes, things aren't exactly cake.... BUT they are good! 

This morning, when Dude woke up, and I was turning him I told him I loved him and he said "I love you too". 
A little later, Aaron was doing something similar and asked how he was doing and he said "good". 
My little stud. Things are going to be okay! 

Everyone left today including Aaron. To some that sounds scary. To me, it's relieving. Now Dude and I can work on healing and getting back on a schedule. We are going to be back before you know it :)

Dominic my love, you are such an inspiration to us all. Thank you God for giving us all the opportunity to know and love this little boy. And thank you for giving us the opportunity to learn from him as well. He is the strongest and bravest guy in the world and I wouldn't trade him for anything in the universe. Thank you for allowing me to be his mommy. It has been such a blessing having him to love and hold and kiss every single day. 


Monday, September 5, 2011


It's kinda surreal when you can sit back and see some of the things that God has put in your life, and why.

In the words of my dad, "This ain't my first rodeo". Dude and I have lived in and out of the hospital since the first day we met. We have gone through surgeries, viruses and coding. I have made many nurse and doctor friends, and I have gone toe to toe with just as many. I have learned how to give shots, change feeding tubes, silence alarms, read monitors and know when to trust them. Let's face it, being a mommy to Dude has been the biggest learning experience I have ever encountered, and I did the majority of it on my own. I will never ever complain about any of it. I've never had to. Just because I didn't have anyone physically next to me, didn't mean that I was alone.

This trip has been so much different than any other hospital stay. Not only have Dude and I had so many people on our side mentally and emotionally, but physically. In the past, I have turned down company so that I could focus all of my time and energy into getting us home. This time, I didn't have a choice. And this time, it was for the better. This time, I couldn't have done this alone. I couldn't have taken the news that I got the other day by myself. I couldn't have told anyone, and keeping it to myself would have been detrimental to me and my health.

So I owe a HUGE thank you to everyone who has been here forcing food down my throat (Tia), sitting in the background, texting me without reply, leaving me messages and for being so concerned that you follow my blog. I can't tell you all how much it means to me that people care about me and Dude so much that you take time out of your day to pray for us, think about us, and read my words. It makes me cry just thinking about how blessed we are.

Again... Thank You to everyone who loves and cares about us!!

As far as Dude goes, today has been an amazing day. His muscles have been spasming which is a little bit painful for him, but it's a good sign. That means his brain is making connections to the parts that had stroked. Poor guy has also been very frustrated because he hasn't been able to form the words he wants to say. Because of that, he can spend a good portion of an hour screaming. The good news in this is that his thought process is normal. Getting frustrated means he is going to try and make those words come out. After a good sleep he has been able to form some pretty important words and more importantly, been able to answer questions. He not only said I love you, but told his Auntie, I love you too. He says mama and when he was tired of being in his chair said "upupupupup". He also answered "good" when Aaron asked how he was doing.

God is good. Life is good. Thanks again everyone for building my strength.


Saturday, September 3, 2011

Good Morning!

You know, it's really nice to have this blog so that I can vent and just talk about things that I'm feeling. The past 2 days have been so crazy with all of the events and findings. I was so full of all kinds of emotion. I was of course.. happy, mad, sad, and most of all SCARED.  I could tell you the ins and outs of Dude's little heart. I know all of the things he has, and all of the things he doesn't have. I know where everything goes, and whether or not it should go there; if God put it there with his own hands or through a surgeon. I could tell you where every single freckle is on his whole body. I could tell you how big his pupils are, exactly what shade of blue they are. I know where every single tooth is and just by looking at his face can tell if they had been brushed. I know every little detail about his whole body except for one... his brain. So when they gave me the news, I was more scared of the unknown than anything else. What does this mean?What do we  do?Where do we go from here? There is something scary about the unknown. Through out the years of dealing with all of this, of course among all other complications that could occur stroke was always on the list and was just something I would never consider. None of them were.

I think in life, the scariest part of life, is the part that we are uncertain of. This has been no different. Now, I have a little bit of a handle on things. I got to see the actual strokes on the CT scan and all of the doctors explained everything to me. There is a difference between a stroke in an adult and a stroke in children. The biggest difference is this: You can't teach an old dog new tricks. When an adult has a stroke it is very difficult to reroute the electrical highways. In children, those highways aren't exactly worn in yet so the electrodes can stray and find a different way much easier. Since there is still a lot of development in Dominic's brain still happening, this will be a lot easier to get through than if it were me.

Today he is already moving his right side exceptionally more often than  yesterday which makes the doctors very hopeful. Swelling in his brain is the worst between 48 and 72 hours. With swelling comes lack of blood flow, so if he still isn't getting enough blood to those parts of his brain and he is gaining strength, those are positive signs. He keeps yelling out of frustration because talking is so hard for him again. We will most likely have to learn how to say a lot of words over again. We will be here for a while with his heart, and then a little longer for rehabilitation.

Everyone stay hopeful and positive! We are all going to have to do this the same way we always have... together!!! They say that it takes a village and let me tell you how thankful I am to have such an amazing village on my side. Every single one of you reading this has a special relationship with me and Dude and every single one of you has helped to make him the warrior he is today. Dude is stronger than all of us and that right there is the reason that he has been chosen for all of this. God doesn't give us more than we can handle and obviously, Dude can handle a lot!!

We are all gearing up for the first Oregon game of the season and I know it is going to make Dude feel at home when he hears the game on and all of us saying OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOduring kick off. Thanks for keeping up with us... things are going to be just fine.


Friday, September 2, 2011

September 2, 2011

Today has been one of the hardest days of my life. All night last night Dominic threw little fits and kicked his leg and screamed. He wasn't communicating very well he was just upset. Today, we took a lot of his "lines" out including his Foley catheter and an arterial line. One thing that has been concerning was that he was only kicking his one leg. Everyone was really concerned about this so we have been talking to new doctors and going through new tests. The tests came back and the results are this: Dominic had a stroke. It happened sometime either during surgery or right afterwards. We found out early, which is good. They have stopped the intense blood thinner and started him on aspirin so as not to cause bleeding in his brain. He will have to go through rehab to get movement back into his right extremities and for his speech.. but already he is trying to talk and succeeding a little bit. He is moving slowly his right arm and a little on his leg but it's still going to be a long long journey. We are all optimistic. Very optimistic. Things are going to be just fine just please keep praying. The Lords Will will prevail and I know He loves us all, in every condition.

When we talked with his surgeon today and his cardiologist, they both had told me that not only has he been through worse than this and made it through, but that more often than not kids do great! Things are going to be okay. And please don't be scared. We aren't. This is different for kids than it is an adult. Their brains are still developing and therefore can make new pathways and figure out how to do things.. just differently. Keep those positive prayers coming our way. And I will keep everyone as updated as possible. Thank you again.


Thursday, September 1, 2011

Dominic September 1, 2011

Last night I didn't get to see Dominic til close to 9:30. Surgery went REALLY well, it just took a lot longer than they anticipated. Since there was so much scar tissue, they had to go really really slow. [it took 3 hours just to open him up!] The actual repair to his heart took about 4 hours or so. The rest of the time they were waiting on him to stop bleeding. When the surgical team transferred Dominic into the ICU they decided that they needed to add another drainage tube in his belly and they did right in the room. After that, we were able to come in, give him a kiss and hang out for a little bit and then go get some rest. 

I got back here at about 7:30 this morning to hear rounds. He did great overnight and everyone was extremely happy with him. The goal today was to extubate him [take his breathing tube out] and start weaning him off of sedation. No one wanted to pressure him into healing too fast and so everything has been in God's time. The biggest step for us was extubation. [Kids who have a fontan, like he does, need to breath on their own for various reasons. 1. being they obviously need to breath on their own to go home and 2. when the ventilator breathes for them, the body responds the exact opposite than if he were breathing on his own. It's really hard to heal from such a huge operation, when the body is being forced to do something it doesn't want to do.] Getting Dominic to breath on his own has been quite a task in the past. He can be stubborn {where does he get that from?!?!?!?! hehe} and sometimes doesn't want to do things just because you told him to.... He has needed to be re-intubated [put the tube back in] a few times in the past because we have pushed a little too hard, or he's just not into it. This is just as important as the heart surgery itself. 

So with those goals in mind, here is a recap of our day. Today at about 8:00am, the staff on the PICU decided that he's doing great, lets see how he does when we wean him off of the ventilator. One notch, two notches... he's doing great! Since we want him to start breathing on his own, lets start weaning him off of sedation. No sign of any change in him... that's GREAT! He isn't dependent 100%. Other wonderful things are happening. My wonderful pastor Victor surprises me by being in town. He came to see and pray for my family. He hung out with us, got to know a little bit of what we are going through and laughed with us. [Victor also introduced me to a wonderful family up here who has a 3yr old with heart issues. He has surgery today and came out great :)] Then, we got the sign... he's ready. We are taking that tube out of his lungs. Not only that but, he was completely off of all sedation! PLUS his heart was keeping pace OVER the pacer it was hooked onto!! So in one day, he is breathing on his own, no pain meds (other than tylenol and phentinol which is a little heavier than IV ibuprofin) and his heart is taking care of itself. Praise God!!! 

I also got a wonderful surprise from an old friend. Thank you so much again Tamera for EVERYTHING today. [she came by unexpectedly and dropped off some gifts and it was just neat to see her after all this time] 

Dominic still isn't awake because it takes awhile for everything to pass through him. I don't anticipate him waking up until tomorrow sometime. He looks great and had a HUGE day today. I'm so incredibly proud of him!!! This all is going much smoother than even the docs have expected. Praise the Lord for all things good!! Thank you everyone for all of your love, support and most of all prayer. :) It's obviously working miracles. 


ps please don't post any pictures on facebook. Thank you.