Today, I feel super... well... bratty is the only word I can think of to describe it. No amount of logic can make me feel any better. I want to lay on the ground and kick my feet and wail as loudly as I possibly can. That's how I feel.
I don't want to celebrate my birthday. In fact, I would be perfectly happy if this year we went from April 25th to April 27th. I would have been satisfied with that. And maybe, we could even just have April 10th and April 26th in the middle of some random month and Dominic and I can celebrate together when things are different. But reality says no.
I feel so stupid actually saying those things out loud, and to be honest, I'm so incredibly thankful, grateful and blessed to be on so many people's minds today. Well, and everyday too! I feel honored even. But still, my bratty side keeps showing her ugly face. I just imagine my chid like self, face smeared with cake and my arms folded and my face scrunched up. lol... I know I still make that face as an adult but I like to think of my bratty self being 5. It seems more acceptable that way, ya know?
As we speak, Dominic is getting his tracheostomy. I'm so excited to see his little face. I'm excited to kiss his lips and for that straw to come out of his throat. I'm excited to be able to move him around a bit more and to go on walks. This will be so good for him. It will be good for me too. My momma heart misses being able to just pick him up when he's hurting. Of course, in true Dominic fashion, right before they were going to take him down, he started to act up and the docs almost said no... not today. My PTSD (ohhhhh yes... I have that lol) went a little nutty and I had to calm myself down. I wasn't scared. I didn't have bad feelings about it, but the devil sure knows when to strike. So now, we wait. It's a short procedure, and I'll get to see him soon enough.
In all seriousness, thank you from the bottom of my heart for all of the birthday wishes for me and for dude; for all of the prayers, well wishes, good thoughts... all of it. There's nothing like having a good support system and I feel like my family and I have the best. It's amazing to see people from all parts of my life, messaging me, bringing my kids dinners, sending us cards. I hope that I can repay each and every one of you for the way you make me feel. Please accept this thank you from the very bottom of my soul.
Love to you all,
Whitney
Friday, April 26, 2019
Sunday, April 21, 2019
Love Abounds
It's been so long since I've been here, in this space. Both mentally and physically. It's been 7 and a half years actually. Sitting in a hospital room, participating in rounds, making friends with everyone I can... lol. I know that's super surprising that I sit here in the ICU cracking jokes and laughing as often as I can, making friends with everyone... so uncharacteristic... but you know what? It's really worked out for me in the end.
I can't stop thinking about the parents who yell at the doctors and nurses. The ones who blame them when things go wrong. Last night I over heard a parent complaining about having to potentially go home on a medication. Complaining about how the doctors don't know what they are doing, they try this they try that and nothing is working... he was going to write a letter. TO WHOM? No really... Who are you writing the letter to? The doctor who is taking care of your child? Their team? The Attending Doctor who was at rounds this morning, in charge of the plans that are being put into action by the rest of the team on the unit? And what is your letter going to say? "Why don't you know what you're doing?"
???
I guess my point is this: Are you actually accomplishing more this way? Or anything at all? I don't think you are. That's just one example of the type of parent I've been exposed to in my life as a cardiac mom. And I think that I've seen enough to have a bit of advice and I wanted to share my approach to the world.
Love always conquers all... right?! I believe it does. I believe it because I witness it every single day. I can count on one hand the amount of doctors and nurses that I have not cliqued with this trip... ONE HAND! And you know, it's not because they are bad at their job, we just didn't clique. But the amount of people who I have loved and even become friends with is overwhelming! Almost every attending, fellow, and nurse that has taken care of my child has a place in my heart forever. I literally would hang out with them. That relationship started with me though. I welcomed them into my heart. I thanked them for working on my child. I made them laugh in the most serious of times and I was understanding when they were doing what they needed to do to find answers. That trust in them turned into them trusting me and they include me and my ideas at their morning meetings about my son's care. They hear me, they correct me, they ask me my opinion. They respect me as I do them.
And then...
When we got the news of Dominics neurological condition, I was showered with love from the entire unit! Hugging me in the hallway, checking in on me during their breaks, crying with me! I've had fellow's come by during rotations on other floors to check on us, surgery physician's assistants come by after their shift all because they like us! They have invested in us and they put everything they have into our care because.. well isn't it obvious? You treat your friends better than your enemies... right?
I had an incredibly precious moment where I got to finally hold Dominic in my lap for the first time since surgery. I looked at him as if he were a new born baby. You know that --> I can't stop looking at this baby because I'm afraid I'm going to miss something look? It was just like that! I was grinning from ear to ear and my heart was whole. During those moments, my nurse took pictures on her work phone (with permission) and sent them to everyone on the unit. Once again... doctors, nurses, assistants... they all poured in to congratulate us and cry happy tears with us and hug us. They even went out of their way to wash his hair with real soap and water while he was in his mama's arms. It was the most magical moment and they all wanted to be a part of it. It was so special.
The moral of my story, and I've said it before... be kind. If you have questions, ask them with love and not accusation. If you're worried, express that but again, without accusation because it's very rare that you find someone who is excited to see someone hurting, especially when they go into a career to help people. They are really trying their hardest for you. It's okay to be scared. It's okay to be worried... just don't point it at people who don't deserve it. Be loving and kind.
Because love abounds
Love to you all
Whitney
I can't stop thinking about the parents who yell at the doctors and nurses. The ones who blame them when things go wrong. Last night I over heard a parent complaining about having to potentially go home on a medication. Complaining about how the doctors don't know what they are doing, they try this they try that and nothing is working... he was going to write a letter. TO WHOM? No really... Who are you writing the letter to? The doctor who is taking care of your child? Their team? The Attending Doctor who was at rounds this morning, in charge of the plans that are being put into action by the rest of the team on the unit? And what is your letter going to say? "Why don't you know what you're doing?"
???
I guess my point is this: Are you actually accomplishing more this way? Or anything at all? I don't think you are. That's just one example of the type of parent I've been exposed to in my life as a cardiac mom. And I think that I've seen enough to have a bit of advice and I wanted to share my approach to the world.
Love always conquers all... right?! I believe it does. I believe it because I witness it every single day. I can count on one hand the amount of doctors and nurses that I have not cliqued with this trip... ONE HAND! And you know, it's not because they are bad at their job, we just didn't clique. But the amount of people who I have loved and even become friends with is overwhelming! Almost every attending, fellow, and nurse that has taken care of my child has a place in my heart forever. I literally would hang out with them. That relationship started with me though. I welcomed them into my heart. I thanked them for working on my child. I made them laugh in the most serious of times and I was understanding when they were doing what they needed to do to find answers. That trust in them turned into them trusting me and they include me and my ideas at their morning meetings about my son's care. They hear me, they correct me, they ask me my opinion. They respect me as I do them.
And then...
When we got the news of Dominics neurological condition, I was showered with love from the entire unit! Hugging me in the hallway, checking in on me during their breaks, crying with me! I've had fellow's come by during rotations on other floors to check on us, surgery physician's assistants come by after their shift all because they like us! They have invested in us and they put everything they have into our care because.. well isn't it obvious? You treat your friends better than your enemies... right?
I had an incredibly precious moment where I got to finally hold Dominic in my lap for the first time since surgery. I looked at him as if he were a new born baby. You know that --> I can't stop looking at this baby because I'm afraid I'm going to miss something look? It was just like that! I was grinning from ear to ear and my heart was whole. During those moments, my nurse took pictures on her work phone (with permission) and sent them to everyone on the unit. Once again... doctors, nurses, assistants... they all poured in to congratulate us and cry happy tears with us and hug us. They even went out of their way to wash his hair with real soap and water while he was in his mama's arms. It was the most magical moment and they all wanted to be a part of it. It was so special.
The moral of my story, and I've said it before... be kind. If you have questions, ask them with love and not accusation. If you're worried, express that but again, without accusation because it's very rare that you find someone who is excited to see someone hurting, especially when they go into a career to help people. They are really trying their hardest for you. It's okay to be scared. It's okay to be worried... just don't point it at people who don't deserve it. Be loving and kind.
Because love abounds
Love to you all
Whitney
Thursday, January 12, 2017
It's Time I Write Again
As life has gotten to be more "normal" for lack of a better term, I have gotten way too busy to keep my blogging up. Truth be told, I have put myself last for a very long time and 2017 is my year to change all of that. As most of you know, writing helps me get through these crazy times that Dude and I live and it's nice to have a place for everyone to go to keep up on his journey. So let's recap the last however long!!!
Last year was a hard one on us. Dominic became extremely sick and there was thoughts that this might be the end. His protein levels dropped to a dangerous level and he wasn't getting better. He had infusions of pure protein (IVIG) but despite everything, he was still swelling up faster than we could deplete... I was scared. I have never been as scared as I was last year. There were so many questions and zero answers. We were finally diagnosed with Protein Losing Enteropathy... or PLE. For the first time EVER I googled what in the heck that was.... take it from me... don't do it. PLE is manageable for most otherwise healthy individuals... but kids with congenital heart defects, its not a good outcome. We lived in this circle of get sick, get swollen, spend time in the hospital, get infusions, come home and do it all over again. Because of this new diagnosis, our amazing cardiologist had to pass us to another doctor. One who had more time for us... one who was just a pediatric cardiologist. For those of you who don't know me well, change and me have a love hate relationship. If I chose the change, bring it on! But, please don't you dare spring change on me! Anyway, new diagnosis, new doctor... Luckily this doc did her residency at Doernbecher WHILE Dude was in the hospital recovering from his last heart surgery. She knew him. She worked on his case, and she was working under our beloved Dr. Armsby. *Sigh of relief... a little*
Okay, so new doc, new diagnosis... and new news. Because we seemed to be losing this battle slowly but surly to PLE, Dr. Carlson (new cardiologist) thought it might be good for us to start looking into our next step. Transplant.
Holy scary word!! My suspicions were right! We weren't going to make it through this! But, lets fast forward... We had a consultation at Stanford, they could have told us that we weren't a good candidate, but we are! Whew! Not in the clear but at least we have options right?! Now our life consists of bimonthly appointments to Stanford and bimonthly appointments to Eugene to see Dr. Carlson. Because of this HUGE change in our life, and my continued effort to keep Dude as healthy as possible, I took him out of school and decided to homeschool. Sure, that's a lot on my plate but what's more important than keeping my child as safe as I possibly can? Nothing in my opinion. I'm sure all you mamas out there would agree with me.
Now here we are!! We have been on the transplant list for a year, and traveled to Stanford about 6 times and Eugene as well. Dominic continues to get healthier and healthier. It seems (knock on wood) that his PLE is in remission!! He has been healthy and his protein levels in his blood are extremely... wait for it... NORMAL! Not normal for him... straight up normal!! So guess what we did? WE WENT BACK TO SCHOOL!!
Now you're all caught up! I want to write all about school next time! There's just too much to put into a single blog post! Thank you all for taking time to read about our life! I can't tell you how much it means to Dude and I to have your love, thoughts and prayers in our corner. No matter what punches life keeps throwing at us, we know we have backup and we know that we are going to be okay. Thank you again from the bottom of our hearts. We love you!
xoxo
-Whit
Last year was a hard one on us. Dominic became extremely sick and there was thoughts that this might be the end. His protein levels dropped to a dangerous level and he wasn't getting better. He had infusions of pure protein (IVIG) but despite everything, he was still swelling up faster than we could deplete... I was scared. I have never been as scared as I was last year. There were so many questions and zero answers. We were finally diagnosed with Protein Losing Enteropathy... or PLE. For the first time EVER I googled what in the heck that was.... take it from me... don't do it. PLE is manageable for most otherwise healthy individuals... but kids with congenital heart defects, its not a good outcome. We lived in this circle of get sick, get swollen, spend time in the hospital, get infusions, come home and do it all over again. Because of this new diagnosis, our amazing cardiologist had to pass us to another doctor. One who had more time for us... one who was just a pediatric cardiologist. For those of you who don't know me well, change and me have a love hate relationship. If I chose the change, bring it on! But, please don't you dare spring change on me! Anyway, new diagnosis, new doctor... Luckily this doc did her residency at Doernbecher WHILE Dude was in the hospital recovering from his last heart surgery. She knew him. She worked on his case, and she was working under our beloved Dr. Armsby. *Sigh of relief... a little*
Okay, so new doc, new diagnosis... and new news. Because we seemed to be losing this battle slowly but surly to PLE, Dr. Carlson (new cardiologist) thought it might be good for us to start looking into our next step. Transplant.
Holy scary word!! My suspicions were right! We weren't going to make it through this! But, lets fast forward... We had a consultation at Stanford, they could have told us that we weren't a good candidate, but we are! Whew! Not in the clear but at least we have options right?! Now our life consists of bimonthly appointments to Stanford and bimonthly appointments to Eugene to see Dr. Carlson. Because of this HUGE change in our life, and my continued effort to keep Dude as healthy as possible, I took him out of school and decided to homeschool. Sure, that's a lot on my plate but what's more important than keeping my child as safe as I possibly can? Nothing in my opinion. I'm sure all you mamas out there would agree with me.
Now here we are!! We have been on the transplant list for a year, and traveled to Stanford about 6 times and Eugene as well. Dominic continues to get healthier and healthier. It seems (knock on wood) that his PLE is in remission!! He has been healthy and his protein levels in his blood are extremely... wait for it... NORMAL! Not normal for him... straight up normal!! So guess what we did? WE WENT BACK TO SCHOOL!!
Now you're all caught up! I want to write all about school next time! There's just too much to put into a single blog post! Thank you all for taking time to read about our life! I can't tell you how much it means to Dude and I to have your love, thoughts and prayers in our corner. No matter what punches life keeps throwing at us, we know we have backup and we know that we are going to be okay. Thank you again from the bottom of our hearts. We love you!
xoxo
-Whit
Sunday, January 27, 2013
it's been a year!!!!
OH how life has changed for us in the past year! It's been so busy that I haven't had time to organize my thought let alone blog about them! Dominic is a completely different person than he was last year and I'm pleased to say that not only can he walk and talk, but he plays sports and dances, and he's in the top of his class! We don't even own a wheelchair anymore!
Aaron and I also finally got married. FINALLY. and it's been the most amazing time of my life! I hope it's been the most amazing time of his too :) Here are a few pics of life and what we've been up too. I promise that I will try and get on here more.
PS Friday is wear red for CHD!!! Make sure that you do it and send me your photos!! We love your support!
Aaron and I also finally got married. FINALLY. and it's been the most amazing time of my life! I hope it's been the most amazing time of his too :) Here are a few pics of life and what we've been up too. I promise that I will try and get on here more.
Tuesday, January 17, 2012
Wednesday, January 11, 2012
:)
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Sunday, January 1, 2012
I’m not that strong
I’m not as strong as you all think I am.
In fact, I’m very weak. My skin tears and my bones are brittle. My eyes fill with tears and my heart aches.
I have been living through the strength of others for so long now, that I have forgotten how to be strong for myself. I have, for so long, been lifted that I’ve forgotten how get up on my own.
Who’s fault is this? No ones. I am just broken in every sense of the word.
So here we are 2012. Here I stand, staring at this new beginning, and I’m so blind that I can’t even see the path that I’m standing on.
2011 was filled with so many… things. So many ups and downs and side to sides. I’m sorry to say that I’m very glad to say goodbye to this year.
Isn’t it funny when you look at people? People who clean houses, rarely keep their own house. Football coaches usually weren’t the star player at their high school. People who repair, rarely fix themselves or their surroundings. I could really use some of my own advice at times. This would be a good example of that.
During my entire stay at the hospital with Dominic, I was strong for everyone because that’s what I thought I needed to do. I kept it together so that everyone else wouldn’t worry… and now here I am.
I leave you with this letter I wrote to the coming year. I hope the best for everyone in this coming year. We all deserve bigger and better with each passing year. We each deserve happiness and abundance. Where do you find yours?
Dear 2012,
I come to you broken and bruised. I’m sorry I couldn’t start our relationship off on a better foot, but here I am. I am raw and truthful. I am full of love with a thick barricade of thorns surrounding it all. I’m sorry that I come to you so calloused and some what cold. I’m not exactly ready or deserving of such a fresh start, but I’m going to take it and accept what you bring me. I promise you very little, but that promise is this: I am going to learn. I am going to learn through everything that has made me hurt and by the day that you and I say goodbye I will be an entirely new person. I am going to be healed; I am going to help and I’m going to love like I never have before. I have a lot to give and I hope and pray that I am open enough to do just that. Please be kind to me, 2012. Please be forgiving for I am once again a child in your arms. I will need a lot of comfort. I will probably need a lot of guidance and patience. Please be patient with me, I beg of you! I’m going to make more mistakes and I will probably hurt a few a long the way, but don’t give up on me. I will forever try harder. There is an amazing person underneath it all and if you stick around long enough, I will share. I will share all that I am and all that I have. 2012, please be kind to me.
xoxo
-whitney leigh
If you are hurting or struggling in any way, please feel free to email me. We can and will get through this together. I will share my secrets and hope to learn some new ones. whitfitz.wf@live.com
-with love
Monday, December 26, 2011
I’m Still Workin On It
It has been one crazy week here at my house. Of course Christmas time is like that at everyone's house. So far, it's been such a happy time. I look forward to sharing more with you when I get a minute to sit down and change my blog. I'm
REALLY excited to share all of the changes that are coming soon. I've done a lot of internal changes and I think it only necessary that I show it through the wonderful blessing that is YOU! I can't wait to share everything with you all; all of the things I'm learning on this new journey, all of the great tricks that have been shown to me.. EVERYTHING. I just can't wait. I hope you all had a wonderful holiday season! Have a very safe New Years and I will see you with my new blog up and running SOON!
xoxo
whitney leigh
Monday, December 19, 2011
that’s just the way it is…
It has been so long since I have posted on here. It’s almost amazing to me how long it has taken me to get the guts up to even log in!
When we got home in October, my life went berserk! I mean, sitting in the hospital with Dude and helping him there was a struggle… but only until I got home and had to do it all on my own! The last two months have been so concentrated with events and love as well as drama and some of the lowest lows I’ve seen.
The good news is this, there is a light at the end of the tunnel and I can see it so clearly.
Through my journey I have struggled with my faith. Of course I have some, but I have been battling myself with it. I have tried so hard to just trust in the Lord to keep me strong but this whole time, I haven’t fully given up control. Until now.
A couple of days ago, I told my mom, “I think this is what rock bottom feels like” and in that same moment, the fog lifted and I saw blue skies. I spent a little while drowning in my own tears, but that’s what it took for me to let go. As strong as everyone has told me that they think I am, you’re only as strong as your relationship with the Lord, and mine was only mediocre.
I spent a good portion of my night last night talking to one of my very best friends, and it’s because of him and his courage that I have this new found excitement about God. His courage and strength to see the other side of the fence has brought me great pain… and great clarification at the same time.
It’s funny because people say that God doesn’t give you more than you can handle but I’m living proof that God gives you enough to realize that you need Him in your life to help you along the way. It’s easy to handle even the most trying times and even death when you have Him to lift you up and take on your troubles.
I have a WONDERFUL support system in my friends and family for when I lose my way. I pray that my situation can inspire others and show them the truth of pure happiness. I hope that in my journey to forgiveness, happiness, faith and all things good… that maybe you all will benefit also.
NOW, with that said.. I am going to be working on my blog a little bit. Of course I will be keeping my updates on Dominic (who is doing SO fantastic) but will also include some of my knowledge of the beauty world, and some of my new findings on faith, health, food, and all things home-y. I am so excited about this new beginning, and I can’t wait to share it all with you!
Thank you all for being there for me and giving me the safety net that you have become. I have friends made of pure gold!
I’m back and we are going to make this life, the best one.
xoxo
-whitney leigh
When we got home in October, my life went berserk! I mean, sitting in the hospital with Dude and helping him there was a struggle… but only until I got home and had to do it all on my own! The last two months have been so concentrated with events and love as well as drama and some of the lowest lows I’ve seen.
The good news is this, there is a light at the end of the tunnel and I can see it so clearly.
Through my journey I have struggled with my faith. Of course I have some, but I have been battling myself with it. I have tried so hard to just trust in the Lord to keep me strong but this whole time, I haven’t fully given up control. Until now.
A couple of days ago, I told my mom, “I think this is what rock bottom feels like” and in that same moment, the fog lifted and I saw blue skies. I spent a little while drowning in my own tears, but that’s what it took for me to let go. As strong as everyone has told me that they think I am, you’re only as strong as your relationship with the Lord, and mine was only mediocre.
I spent a good portion of my night last night talking to one of my very best friends, and it’s because of him and his courage that I have this new found excitement about God. His courage and strength to see the other side of the fence has brought me great pain… and great clarification at the same time.
It’s funny because people say that God doesn’t give you more than you can handle but I’m living proof that God gives you enough to realize that you need Him in your life to help you along the way. It’s easy to handle even the most trying times and even death when you have Him to lift you up and take on your troubles.
I have a WONDERFUL support system in my friends and family for when I lose my way. I pray that my situation can inspire others and show them the truth of pure happiness. I hope that in my journey to forgiveness, happiness, faith and all things good… that maybe you all will benefit also.
NOW, with that said.. I am going to be working on my blog a little bit. Of course I will be keeping my updates on Dominic (who is doing SO fantastic) but will also include some of my knowledge of the beauty world, and some of my new findings on faith, health, food, and all things home-y. I am so excited about this new beginning, and I can’t wait to share it all with you!
Thank you all for being there for me and giving me the safety net that you have become. I have friends made of pure gold!
I’m back and we are going to make this life, the best one.
xoxo
-whitney leigh
Thursday, October 20, 2011
oh how I look up to you
 |
| Dr. Laurie Armsby and Dude 10/20/2011 |
Today we went back to OHSU for some follow ups on his lungs and what not. It was the best feeling when Dude ...walked... into Dr. Armsby's office to surprise her. She hugged him like he was her own and it brought tears to my eyes. It was the most touching reunion. She was so strong when we found out about his strokes and she is always so great about being up front and honest with me. She didn't look scared and she didn't seem worried at the time... but she sure looked excited and relieved for us. All of his tests came back GREAT. His surgery is holding up really well, and his lungs are doing great.
I think I have a date for our Lanterns. And I think I have a good reason to pick this date. I will share more about it later but for now.. if you are going to order them... order them; and, if you're going to make them.. start making them. I really hope that everyone shows up to send their thanks for answered prayers. Not only will it look amazing to see all of these lanterns in the sky, but I know it will show Dominic, just how many people love him and have been praying for him through all of this.
I ordered mine through www.justartifacts.net/ and they are under 2.00. If you have friends that want to order, I would suggest ordering them together, or you can always email me {whitfitz.wf@gmail.com} and we can order them all together.
I really feel as if I'm being pressed to do something big with the situation I've been dealt. I sort of always have felt this way, but lately, it's stronger than ever. I hope that after Dude is all healed up, you continue to follow us and support us as this is not the end of our journey. Big things will come of this, and we will be asking for your help and your prayers again. :) I can't thank you enough for sticking with us this far! I have been blessed and so has Dude.
with love,
Whitney
Friday, October 14, 2011
Live it like a Movie...
I know it's been a little while since my last post... but things have been CRAZY here! Even though Dominic is in therapy almost 5 hours a day, I some how am crazy busy all the time! When Dude is around, there's lots of trips to the bathroom, because he can tell me now when he has to go. And, when he's gone, I'm cleaning up everything that doesn't get cleaned when he's here, making myself eat when I can, showering when I can...
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| 10/14/2011 Crashing into things :) |
Some GREAT news here... Remember when we got transfered to Legacy Emanuel?? Dominic couldn't do anything for himself... infact, he didn't even want to get out of bed for the most part!
Now, he's not only moving his right side... A LOT, but,
he's able to hold himself in a sitting position...
he's using his right arm to help him sit up...
he's opening both hands...
he's holding a pencil with his left hand...
he can feed himself...
AND...
HE'S WALKING!
 |
| being silly |
It's so crazy to think of how I felt that day when we found out that he had had a stroke. I was scared and I didn't know what to think, or what to expect. Anyone who has ever met Dude... knows him for his charming personality. If he couldn't get that back.. what would he be like? On top of that, sports are his life! He had been looking forward to this surgery so that he could actually keep up with the other kids... and this is what happens.
 |
| Occupational Therapy with Alaina |
 |
| ... and Toren |
 |
| (: Portland :) |
 |
| Music Therapy: Dominic Playing the Guitar |
Have any of you been thinking about the lantern idea?? Because, you might want to start thinking about getting those lanterns in your possession. I have this hunch that something big might happen soon :)
I hope you all are having an amazing day like we are!
And sorry the video is sideways :)
Wednesday, October 12, 2011
The Story of Auntie Tia
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| Tia and I, being Tia and I |
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| Halloween 2007 |
I'm not exaggerating when I tell you that we... shared... EVERYTHING! Sometimes unwillingly, but we did none the less. Up until I was in high school, we even shared a room, and when we got older, even ended up dating some of the same guys. (LOL)
When Dude was born, he looked just like Tia. In fact, when we would go out places, people always told her how cute her little boy was! Unless people knew he was mine, it was an automatic assumption that he was hers! Sometimes I was jealous of her stealing my thunder, but for the most part, I was okay with it.
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| On our way to the snow |
At the beginning, it was me, Tia, and Dude. Tia was only 18 when he was born and she had her fun years ahead of her. She was free to do whatever it was that she wanted, but she chose us. She helped me unlike anything I could ever explain. She was just as much his mom as I was, and actually I used to joke around about how she was the best dad ever! If she knew that I had a long night, she would wake up with him in the morning. At work, when he couldn't go to daycare, she would keep him busy or grab him when I couldn't. She put her "auntie rights" on the back burner and helped me discipline him when he needed it. I'm not sure that she has gotten to spoil him and send him home yet. She would baby-sit anytime I ever needed it whether it be to go have fun, workout, or just take a nap, and not one time have I ever EVER heard her complain about having to watch him for me, or cook him dinner, or anything. I think she just assumed that he was her responsibility just as much as he was mine. There were even times when I would get so upset with him for whatever reason, and I would have to ask him, "Do you want me to go get Auntie?" and he would straighten right up. Those two built a bond that is just as strong as the one that her and I have built. It's just as strong as the bond that Dude and I have built! |
| Halloween 2009 |
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| our "sister" tatoo's |
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| In the waiting room, right before surgery. 8/31/2011 |
Hey Tia, if you are reading this... I love you more than anything. Thank you for being more than just a sister to me. You have been my teacher, my shoulder to cry on, my refuge, and most of all you have been the very best friend I could ever ask for. It's hard for me to imagine siblings not having the relationship that we have been so fortunate to have. There is nothing in this world that I wouldn't do for you. I hope you know that!
Oh and Seth, you are such a lucky guy! Thanks for taking care of my little sister. She means the world to me ya know, keep her safe and never let her cry!
xoxo
-whit
Friday, October 7, 2011
My Big Announcement! 10-10-11
Monday is Dominic's half birthday. He has been more excited to turn 5 and a half, than he was every excited about turning 5. I would love, for his half birthday, to show him pictures of everyone who loves him and supports us! So if you have your gear, wear it and take a picture. If you don't, be creative! Make a sign and take a picture of yourself with it... shoot anything! I would also love love love to post them on my blog to prove how quickly love can travel and spread. SO, Monday October 10, 2011... Mark it in your calendar and do something with Dude in mind!
My facebook isn't working so I'm not able to see pictures that you all have posted, but please feel free to email them to me!! whitfitz.wf@gmail.com
Oh! And if you miss it, feel free to email me pictures of you showing your love anytime!
Oh! And if you miss it, feel free to email me pictures of you showing your love anytime!
I have said it before, and I will say it again... it takes a village to raise a child and our village is an amazing one. Dominic and I have been so incredibly blessed to have so many wonderful people dropped into our laps and touch our lives! We appreciate every single one of you! THANK YOU THANK YOU!!!!
Thursday, October 6, 2011
Wednesday, October 5, 2011
The first conference
So, I had my first conference with Dude's therapists yesterday. It was a little bit intimidating at first. I walk into a room and everyone is watching me sit down. Now normally, I would love this attention... but it felt more like I was sitting down with all of my teachers because I was in trouble. Weird feeling. Anyways, everyone introduced themselves, there were about nine docs and therapists all together. Each one went around and told me what they work on with Dude
-since I don't go down with him. He likes having his big boy time-
It was fun listening to all of the things he could do now considering two and three weeks ago, he couldn't do anything but scream. They showed me pictures that he was coloring and telling me about how proud of them they all are.
Take that feeling you get when you sit in on your child's parent teacher conference... multiply that by 10,000!
I was BEAMING... of course. But then, they started voicing their concerns or things he needs to work on.
Let me give you a little insight on our lives as far as Dominic goes developmentally in the past 5 years.
We came home from the hospital knowing that Dominic would be a little behind on a few things. His growth was obvious when at almost 2 months old... he was barely 7lbs. The staff at Doernbecher also said that he could be slower than most kids his age due to his hospital stay. At three months, he had his second (and third) heart surgery. It was still too soon to see just how behind he would be he spent the next almost 3 months in the hospital over coming multiple battles including coding in my arms, (second most scary day of my life), stomach surgery, failure to strive, and the list goes on. I can't count on one hand how many times he looked death in the face.
We came home from that whole fiasco and noticed only minor deficiencies. (Such as, he couldn't roll over til he was about 8 months old) The most encouraging part, is that I saw his frustration. When he would try and do the things that his brain knew he was supposed to be doing, he would get MAD. I'm talking... so pissed off! He just didn't have the stamina that his brain wanted. This little boy was determined though! He would try and try and try until he was (literally) blue in the face, and then he would try again! by 9 months he was crawling and at 11 and 12 months, he was trying to walk... but of course, his body wouldn't let him. You see, his heart took up so many calories to pump his blood, that there weren't many left for nutrition and growth. So, he stayed small. The thing is, mentally he was so ahead of the curve. He was talking and communicating better than most kids his age. (I will never forget when he said his first words... no not word.. words. It was I love you, and it sounded like "I ya ya")
Then it was like overnight, everything changed. Dominic had surgery in May of 2007. He was expected to be in the hospital for 2 months. We were in and out in 6 days! When we got home, he started walking.. no he started RUNNING! He was so happy! Not long after that, he was having adult conversations with me and Tia. He was amazing.
At 18mos I put him in daycare/preschool. He was such a charmer and you couldn't even tell that he had gone through anything at all. (except for that he was a little bluer than the other kids) The teachers at Building Blocks fell in love with him (and haven't fallen out yet). He was just as smart if not smarter than everyone in his class. It was one of those feelings where you want to just stick your tongue out at the docs and say... "TOLD YA!!"
He turned 4 and went to Grace Christian Pre-School and again.. did great! He graduated and knew how to spell and write his first and last name. He could count to 20, and 100 by 10's. He knew his address, phone number, birthday, days of the week, months of the year... the list goes on and on and on. None of his teachers have ever had anything negative to say about my little guy. (Except that maybe he talks a little too much... but I mean, look at his mom! lol)
So now, when the therapists voiced their concerns, I wasn't sure how to compute it. It hurt a little. Not for me, but for him. They all said that they can see his frustration. He remembers knowing how to do all of this stuff, and he just doesn't understand why he can't! The physical stuff is a no brainer to him. He's weak. He just had surgery and his muscles just aren't ready. (he does have a lazy bone in him hehe) But when it comes to saying the words that he wants, but they won't come out. Or writing his name, and the letters aren't forming. He starts to get angry. He almost growls. (Tia and Aaron, you know what I mean)
I started to cry! I, just like every other mother out there, want to take that frustration away from him. It's hard to watch your child know the answer, but can't think of the words that he's trying to say. I just wished it was me.
Then I remembered, with the help of Aaron, that there was a time after this surgery where he was worse off. His whole right side was limp. He couldn't talk. He screamed for 17-20 hours a day, unless he was medicated. He couldn't breath on his own. And it finally hit me...
Look at him!!! Look at how far his determined little brain has come! So, he gets frustrated. It's because he knows what he's doing. He's just trying to crawl again so to say. His little mind is healing faster than his body is, and he doesn't understand.
Now I smile when I see him get frustrated. I comfort him and tell him that he'll get the hang of it again. I know in my heart that he is just too strong to give up. He always has been. He can move his right side now... All of it! He makes fun of me every single day, just like he used to. He sings songs with me just like we did when we would drive around. He has his brain... we're just working on the rest.
For those of you who read this, I invite you to meet my miracle. You won't know whether or not you should fall in love with his charm, or his sense of humor. He will charm you with his sensitive heart, and crack you up with his sarcasm in the same sentence. (If you have daughters his age... lock em up!!! LOL He will be a lady killer and I have plenty of people who will tell you the same thing.) He will make fun of you in the most polite way you have ever heard, and all in good fun. (He would die if he knew he ever hurt someones feelings) And if you have son's around his age... you better hope that they are respectful around him because, he already has an opinion on him that's six foot eight! He doesn't like when people make fun of his mom or his sister... unless it's him of course. And don't try to be Toren's best friend unless you're his too. He has that Fitzgerald fight in him, that's for sure!
So to wrap up, he's doing SO good! He is making leaps and bounds in the right direction. I'm so incredibly proud of him and the person he is. Docs say we will have another two to three weeks here before coming home. There's a possibility that they might send us to an out patient facility in Eugene as a sort of half way step to home. (My sister asks me every single day if I'm moving in with her again.. or better, when I'm moving in with her! I'll have to post her story soon so that you all know her roll in our lives)
As always, Thank you so much for all of your love and prayers that come our way! We appreciate it more than you know! There's a light at the end of our tunnel!
xoxo
-whit
Monday, October 3, 2011
I want to be a Disney Princess
I have been watching a ton of Disney movies with Dominic lately, and they make it look so easy! If you are a good person, and you wish on a star... you get what you want... WELLLLLLLLLL Why can't I just be a Disney Princess?? I mean, I've been wishing on stars, and times of the day, and throwing money in wishing wells since I can remember.. Where's all the loot?!?!?!
Actually, I finally watched an amazing Disney Princess movie last night. The Princess and the Frog. It makes me want to go to Mardi Gras in New Orleans for one.. but second of all, the message is amazing. Not only do you have to have wishes and dreams, but you have to work hard for them too! And, on top of all that, you can be complete without love. So, basically, love, work hard, and never lose sight of your dreams, and your life will be complete. (don't forget about being honest, hanging out with the right people.. and the list goes on)
Thanks again Walt Disney and your amazing company for showing our kids in a fun way, what's important in life. I obviously have learned a lot from you and your movies. I'm just glad that they are still around for our kids.
I can't wait to get home and start my hard work all over again. Dominic is doing all the hard work he can right now. He's doing great in therapy. He started moving his right arm a couple of days ago and now he can move it on command. We need to work on some hand eye cordination BUT he's going to be just fine I think.
He keeps me in the best mood! Last night when I had the headache of the year, he asked me if he could "ruv" (rub) my head for me... to make me feel better. He keeps me laughing and is so tired of being in this stupid bed it's driving him crazy.
We have our first conference tomorrow with all of the doctors and therapists and I should have a better idea about what's going on. Keep those prayers coming!!
OH P.S.! Have you given any thought to my lantern get together???? (the idea came from another Disney Princess movie that everyone should see... Tangled) I would love to get everyone together and even if you don't live in my area... sending off a lantern thanking Him for all answered prayers (or whoever it is you have sent your requests too) I also think, what an amazing experience for everyone to actually get to meet each other and see what the power of love can do!
If you ordered one, T-shirts and bracelets will be available on Thursday! And it would be so amazing to see everyone in their shirts or bracelets. So, please, send me pictures of you and your loved ones wearing them! whitfitz.wf@gmail.com. I will post them on here under a new page that is under construction!
Love to you all! And thank you once again from my whole family!
xoxo Whit
Actually, I finally watched an amazing Disney Princess movie last night. The Princess and the Frog. It makes me want to go to Mardi Gras in New Orleans for one.. but second of all, the message is amazing. Not only do you have to have wishes and dreams, but you have to work hard for them too! And, on top of all that, you can be complete without love. So, basically, love, work hard, and never lose sight of your dreams, and your life will be complete. (don't forget about being honest, hanging out with the right people.. and the list goes on)
Thanks again Walt Disney and your amazing company for showing our kids in a fun way, what's important in life. I obviously have learned a lot from you and your movies. I'm just glad that they are still around for our kids.
I can't wait to get home and start my hard work all over again. Dominic is doing all the hard work he can right now. He's doing great in therapy. He started moving his right arm a couple of days ago and now he can move it on command. We need to work on some hand eye cordination BUT he's going to be just fine I think.
He keeps me in the best mood! Last night when I had the headache of the year, he asked me if he could "ruv" (rub) my head for me... to make me feel better. He keeps me laughing and is so tired of being in this stupid bed it's driving him crazy.
We have our first conference tomorrow with all of the doctors and therapists and I should have a better idea about what's going on. Keep those prayers coming!!
OH P.S.! Have you given any thought to my lantern get together???? (the idea came from another Disney Princess movie that everyone should see... Tangled) I would love to get everyone together and even if you don't live in my area... sending off a lantern thanking Him for all answered prayers (or whoever it is you have sent your requests too) I also think, what an amazing experience for everyone to actually get to meet each other and see what the power of love can do!
If you ordered one, T-shirts and bracelets will be available on Thursday! And it would be so amazing to see everyone in their shirts or bracelets. So, please, send me pictures of you and your loved ones wearing them! whitfitz.wf@gmail.com. I will post them on here under a new page that is under construction!
Love to you all! And thank you once again from my whole family!
xoxo Whit
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!
xoxo
-whit
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.
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!
xoxo
-whit
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.
xoxo
-whit
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.
xoxo
-whit
Monday, September 26, 2011
T SHIRTS
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
xoxo
Whit
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.
-whit
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.
-whit
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