I have been following Sera, the mama behind @oops.i.dunn.it.again, for over a year now and she is still one of my all-time favorite accounts. Not just for home decor and Rae Dunn inspo, but because she is truly an inspiring person.
The first post of hers that caught my eye was a Rae Dunn post about spreading kindness instead of hate. She suggested next time you’re in a store to bring some carts from the parking lot with you in store, let someone with less items cut in line, or share some of your finds with other dunnies. You could just tell she is such a genuinely kind-hearted person. From then on I started following her and would see her countless times pay things forward, enter giveaways for other people, and she always has something sweet to say.
But what I also learned about her is she is a CHD Mom.
CHD stands for Congenital Heart Defect. There are over 40 different types of congenital heart defects and her 16-year-old son Austin has aortic stenosis which is a narrowing of the aortic valve. He was born with aortic stenosis and 2 holes in his heart. But thankfully the holes closed as he grew.
A few weeks ago Sera posted to her stories that she was having a rough week and feeling anxious for Austin’s appointment at the end of the week. Without giving too much information, she let on after the appointment that they didn’t receive the news they had hoped for.
It’s ok to be upset. It’s ok to feel defeated. It’s ok to be mad at the world for the hand you’re dealt. If you suppress those thoughts and feelings they will surface at the worst times.
Chatting with her for a little we decided we wanted to do something for other CHD moms. I felt passionate about sharing her story and she wanted to do an incredible giveaway. So here we are.
Sera opened up to me about her and Austin’s journey to help bring awareness to CHD and let other CHD moms know they are not alone.
Being pregnant myself, I had a lot of questions for her that she kindly answered. Continue reading for the full interview and giveaway details. Also, after reading this please go show @oops.i.dunn.it.again some love on Instagram!
(PD) When did you find out about CHD?
(S) I had only heard about CHD after the birth of my son. Even though I grew up with a girl in my class with it I never fully knew what CHD was.. just knew she went to the DR for her heart.
(PD) How has CHD affected Austin’s life?
(S) Austin has always been a hyper and active child. If you saw him you would have never known what he was diagnosed with. We saw specialists at least once a year to monitor his heart and check to see how it was growing as he grew. The only thing he grew up knowing that was “different” was that he couldn’t play contact sports and couldn’t be hit in the chest. However, after his valve replacement at 13, it has affected his life more. Now he has to be on blood thinners and other medications to regulate his heartbeat and blood pressure. He has to do labs at least once a month to measure his “levels” to make sure he’s within range for the blood thinners. He has to be more careful with the bumps and bruises and I have to pay more attention to his mannerisms and speech and look for any signs of a possible stroke.
(PD) What questions would you recommend expecting moms to ask during their ultrasounds about CHD?
(S) Ask ALL the questions that worry you. Even if this is the only thing you have ever read about CHD, open the door for conversation and ask them what CHD is. Have them take time while looking at the baby’s heart during an ultrasound. Have them take time while listening to the baby’s heartbeat. Just start the dialogue about CHD.
(PD) What has been Austin’s course of treatment for CHD?
(S) With aortic stenosis, they monitored his heart and the valve as he grew. They keep an eye on the blood flow and the pressure that builds up in the heart chambers. They also monitor the heart walls and their thickness. If the heart shows any sign of “stress” they take action.
When he was just a couple months old they went in and did a valvuloplasty (went through the artery in his leg and ballooned the valve to stretch it a bit). Luckily that procedure lasted him most of his childhood without needing other interventions. The Drs thought it would last him into his early 20s but unfortunately during his yearly checkup when he was 12 the tests showed a different story. The heart walls were thickening because the heart was overworking itself. (Think of it as if your working out…. as you lift weights the muscle grows as you work it more. The same goes for the heart…. the harder it has to work the thicker the muscle gets.)
This is when they started talking about surgery/valve replacement. That appt was in June of 2015 and in March of 2016 he had open heart surgery to replace the valve. Luckily, because of his size, they were able to stretch and fit an adult-sized valve in hopes that would be the only surgery he would need. Because he has a foreign object in his body, Austin has to take blood thinners to prevent clots (the body’s natural reaction to something foreign in the body) which could lead to him having a stroke. During our last visit, the dr noted that his heart walls are thickening again. He put him on a new med to regulate his heart rate and blood pressure in hopes that will stop the overworking of the heart.
(PD) What advice would you give other CHD moms?
(S) Take your journey and your child’s diagnosis one day, one minute at a time. It’s ok to be upset. It’s ok to feel defeated. It’s ok to be mad at the world for the hand you’re dealt. If you suppress those thoughts and feelings they will surface at the worst times.
Lean on your support system as much as you can. While you are there holding up your child, someone needs to be there to hold you up.
Talk about and share your journey. It’s is so therapeutic to just speak out loud about your stresses and worries. Also, you may find an amazing tribe to help you through while doing so.
(PD) If you could tell yourself one thing on the day you found out about Austin having CHD, what would you say?
(S) The road/journey will be long and hard but you are strong enough to endure. You are strong enough to walk this journey with your child and be their support.
(PD) How do you wish others would treat you and Austin regarding CHD?
(S) It’s not how I wish others would treat us with this diagnosis but more how I wish others would treat everyone in general….. just be kind! You never know the path someone is walking, the storm they’re enduring, or the troubles they have.
I remember taking the kids to McDonald’s for ice cream after a horrendous lab visit. I placed my order and had the lady behind me honking her horn and yelling at me because she thought I cut in front of her. At that moment I just broke down in tears. After all the stresses from earlier, I couldn’t take anymore. I pulled up to the window and the poor girl working didn’t know what to say. Through my tears, I just asked to pay for the car behind me because she must have been having a worse day than I was to have treated me so poorly.
Just little things, and little moments, like that… take a moment to think before you yell at someone or honk your horn. Take a moment to think before saying something unkind or treating someone poorly. You never know what they’re really struggling with in life.
(PD) How do you continue to be strong?
(S) Oh I’m not strong! lol! I break down and shut off more times than I can count. What keeps me going… what keeps me pushing ahead… is Austin. I see his strength and all he has been through and I see his positive attitude shine through. I see how he faces his fears and his diagnosis and he doesn’t let it get him down. He is the strong one!! Not me.
(PD-I have to say, I think Austin learned strength from his mama. Sera, you truly are one of a kind).
(PD) How does Austin continue to be strong?
(S) I wish I knew his secret! He never complains and doesn’t let what he’s going through bring him down. I think being born with CHD and not knowing life as anything but… he just lives. This is his life and he just walks this journey with whatever it throws at him.
(PD) How has your experience and journey with CHD shaped your life?
(S) Having a child with CHD has made me more aware, more loving, and kinder. It makes me see things a little differently… it makes me love harder and feel more. Seeing Austin’s strength gives me the strength to take on this fight with him. It also has shown me to try and not sweat the small stuff and to really just take each day one day at a time. You are not in control of everything… sometimes you just have to adapt and move on the best you can.
(PD) What do you wish others knew about CHD?
(S) I just wish others knew about CHD!! It’s hardly talked about… yet it’s the leading cause of birth defects, infant death and, in the US, twice as many children die from CHD than all forms of childhood cancers combined. With those numbers, it blows my mind that it’s not talked about more! And that the funding for CHD research is so low. More talk/awareness needs to happen!!
(PD) Are there any organizations or resources you recommend for others learning about CHD?
(S) The Pediatric Congenital Heart Association has a great site with great information (they also have a great IG page). Also, there are so many amazing heart moms here on IG that share their struggle and journey. Following them is SO inspiring and I have learned so much about other forms of CHD.
(PD) What has been your saving grace during your journey with CHD?
(S) My husband has been our number 1 support! Even though he’s not biologically Austin’s dad, his love and strength have held us both up when we were at our lowest. Family and friends have also been my saving grace through all of this. Not only have they been there for me but they have supported and loved Austin every step of the way. We both have been so blessed to have those who walk this journey with us.
(PD) Who is Austin outside of his CHD diagnosis?
(s) Austin is 16-years-old and soon to be a junior in high school. He has found his love for the culinary arts through amazing programs at his school. He looks forward to perusing this passion after high school and hopes to become a chef. His hobbies include skateboarding and photography.
(PD) Who are you outside of being a CHD mama?
(S) I’m Sera, a 36-year-old stay at home mom of 3 (Austin – 16, Blake – 11, Caley – 9). I have always loved home decor and have found a fun hobby in styling and decorating our home. I’m always redoing or revamping something around the house and enjoy documenting the progress and sharing through Instagram, always with a Rae Dunn mug in hand.
[end of interview]
I just wanted to thank Sera again for being so candid, open, and honest about yours and Austin’s journey with CHD. You have no idea how many people you are helping by bringing awareness and the strength you are giving others by sharing your story. You both are such wonderful people and I am so honored to be able to write this blog with you.
GIVEAWAY
Being the kind and giving soul Sera is, we have teamed up for an awesome giveaway for CHD mamas. This giveaway is a little different than others we have done because it is not open to everyone. Read the rules below and fill out the form to enter or enter on either @PickingDaisiesBlog or @Oops.I.Dunn.It.Again Instagram.
PRIZE:
One winner will receive the following:
- Rae Dunn Heart Mug
- $50 PayPal or Venmo Cash
- $50 Donation Made in Winner’s Name to The Pediatric Congenital Heart Association
- Interview on PickingDaisiesBlog.Com
WHO CAN ENTER:
- CHD Parents/Grandparents
- Someone diagnosed with CHD
- Someone nominating a CHD parent or diagnosed
HOW TO ENTER:
- Follow @PickingDaisiesBlog and @Oops.I.Dunn.It.Again Instagram
- Fill out the form below -OR-
- Enter/Nominate someone on either @PickingDaisiesBlog or @Oops.I.Dunn.It.Again Instagram
(if entering on Instagram, please tag the person you nominate and share a little about their story).
- 50 Bonus Entries: Donate $10+ to The Pediatric Congenital Heart Association
(DM either @pickingdaisiesblog or @oops.I.dunn.it.again a screenshot of your donation before July 3rd, 2019)
We would love if you help spread awareness by sharing this blog & our giveaway to your stories, Instagram, Facebook, and/or Pinterest. Winner will be chosen on July 3rd, 2019.
Also, if you would like to help others with CHD, I highly encourage you to donate to The Pediatric Congenital Heart Association. Even $10 goes a long way in helping them receive the funding to continue research and helping others with CHD. You can donate here.
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