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
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