This is all fresh and new and you're still processing. You will heal as he heals. Today, it's all about the surgery. Tomorrow, it's 99% about the surgery and 1% about how cute he is when he smiles. And next week, it's 90% about the surgery and 10% about his poopy diapers. And by summer, it's 5% about his surgery, and 95% about him just being your healthy, happy baby.
Yes. That's when I cried. ❤ I'm sure he needed it too; of all the patients he's going to work on, he had to be under so much personal pressure to give this baby a chance at a healthy life.
I am a paediatric cardiologist in the UK And this was one of the most beautiful explanations of being a heart mummy I have ever heard. I have no doubt this post will help so many other parents
A cardiologist (among many others) saved my mom's life, and I am so very, very, very, grateful that there are people like you, thank you so much for all the extremely hard work you put in your whole life to do what you do. Really, thank you so much!
My 19 year old daughter had open heart surgery for her ASD/VSD at 5 months old. It was on a Wednesday and we were discharged on Saturday. Your video brought back so many feelings! We even had a similar experience in the cafeteria! She has been a swimmer since she was 8 and has zero restrictions after surgery. You got this (and so does Oliver)! I actually went back to school after the whole experience and am now a NICU RN.
Thank you for sharing ❤ I am a Perfusionist (person who runs the bypass machine during open heart surgeries). It’s not often I get to see or think about the effects of what I get to do everyday at work on those who we are operating on. I am so appreciative of you sharing your emotions and experience throughout this. I needed this reminder of why I do what I do. Sometimes I can get tunnel minded and often don’t remember the effect we are having. I love getting to help families like yours ❤ Hoping Oliver continues to get stronger every day!!
Thank you so much for all you do for us heart patients! I’m 31 but had 2 open heart surgeries when I was 24 and 25 and will need more throughout my life. You are a blessing ♥️
I didn't even know that was a specific occupation. Is a perfusionist trained as a nurse? Something else? Thanks for playing a special part of lifesaving surgery.
Such wonderful news! Prayers continue for Oliver's uncomplicated healing!!! And for you guys to get the calm center of life back in your home, and nervous systems!❤
You were stressed over this for so long, your body needs a little time to adjust to being happy and relaxed. Once you get some good sleep, you will hopefully lose the sadness. I am so glad he is doing well.
Your body isn't done processing the chemicals from the first batch of emotions before another wave of big feelings hits. Give yourself some grace. Things will level out. You are a warrior.
I saw your Pumonary Hypertension binder . Our daugher was diagnosed at 5 months old and she is now 10 years old. If you ever have questions, I am happy to help. PH is really rare. From one cardiac mom to another you are doing an AMAZING job!
Thank you for the update. I have a coworker who has a son who went through this almost 30 years ago, and her son is 30 and is in great health. He volunteers at a camp for cardiac kids every summer, and he loves knowing that a surgeon saved his life when he was so little. So grateful for Ollie!
The emotional let down is enough to make you feel like you’re spinning in circles to make sense of what just happened. It’s a massive experience that takes its role on your body. Feel your feels. And let yourself know it’s alright to feel it all. The more you’re kind to your self, accepting it all, the quicker you’re going to balance out. I’m so proud of you. You’re just so good and kind and real.
Yes, yes, this! Just because you're in a better situation now doesn't mean you have fully processed everything you've been through. You've probably not processed it at all just trying to get through it!
Sending love and prayers your way. Yep, it's a LOT of emotions. You're doing so great sharing and feeling them all. Big hugs to you and your beautiful family.
Words cannot describe how thankful I am to you for this video, but I will try. When you said that you were "gaslighting yourself" I just broke down. I had open heart surgery at 50 for a double bypass. You explaining how you feel and the back and forth of your emotions was exactly what I have been going through. I have never heard anyone explain it like you did and didn't realize that this is what I was doing to myself. I haven't quite been able to forgive myself for al l the trauma I caused. I want you to know you are not alone. PTSD is real and manifests its self in really strange ways. You will get through this and so will I. Love to you and your family. Oliver is so lucky to have you.
My son had to have his entire colon removed. After weeks of being in an out of dr.’s offices and multiple hospital stays suddenly he was having surgery. It was on a Saturday and I arranged for friend to be there with us. The minute I walked into the waiting area and saw my friend, I completely collapsed in her arms. It was like finally I could let go of the emotions I was keeping locked up. What you have gone through is one of the hardest things you will ever experience. Be kind to yourself. Also consider counseling and find support groups for your son’s condition. Have a people that share your experience is priceless!!!!❤❤❤❤ My son was 18 when all this happened to him and today he’s 24.
That must have been absolutely terrifying. It’s totally normal that your body is now needing to process all of that terror. Be kind to yourself regardless of the competing thoughts going on. You’re allowed to process whatever feelings are happening in your body without needing to explain them. I’m so happy Oliver is ok. Thank you for updating us.🫂💜💜💜💜💜💜
I work in a Cardiac Surgery office and your reaction to this whole thing and the conflicting feeling is 100% natural and normal. You're never alone in something like this even though it feels like you are. And thank you for sharing this with all of us! I know this will help other parents in the future.
The floating feeling about living in the happy news for a minute is everything & the cashier was a beautiful soul. Thank goodness for people like that. & a surgeon who hugs you is just so spectacular. I’m weeping. (Mother-Baby RN here btw). Thank you for the sharing.
From a fellow mom of a CHD kid and former RN - it’s ok have ALL the feelings. It’s so SO normal to experience the emotional pendulum. Give yourself the grace to feel it all. You’ve got this! And glad to hear Oliver is on the mend!
I'm 53 years old and my brother's 51 and he had surgery as an infant under 6 months of age and it has a huge scar on his upper abdomen lower chest. It was a major surgery and traumatizing. I'm sure for my mom and dad, but I'm here to tell you that neither one of us think about it for a second other than my brother had a cool scar and a cool story to show and tell when we were kids. Hugs to you and the family
“And that is good, so why do I feel bad” really hit home for me. My son spent 32 days in the NICU. He’s been home for 6+ months now and I still have days where I cry about the times when he wasn’t okay.
Sure, the _sweet_ ones do. 😀 But, the callous, cold ones! You want them to die so they cannot hurt or neglect your child! If the medical staff are all the Good kind of people, then thank God. If they aren't, they have not just hurt the baby, but (less important) they have made the parent Hate them enough to kill them. A human Being being driven up to that level is an injury they don't recover from, no matter how small because they can always reach that level of Rage again. (Notice I spelled that "Hate" with a capital "H".) But again, if the child's is harmed or helped is most important.
@@TheNoiseySpectator you're talking to someone who has medical ptsd from a stay that cause 3 extra surgeries and 2 broken bones. I had some awesome people as well but at two other hospitals.
What a gracious surgeon to let you hug him after everything went well. That probably made his day as much as it made yours. You've been through so much. I'm glad you're listening to how you're feeling and that everything turned out well. Remember to take it one day at a time and know that your family is so strong and beautiful!
Else and Jonas, I was born I'm 1987. I was born healthy but started getting sick at 6 months old. Noone knew why. But when I was 4 years old, after a horrible few days, I was diagnosed with an ASVD and Pulmonary Arterial Hypertension. I am now 37 years old. I lived a long life and now I'm being told I need a heart and lung transplant. Your little Oliver is what we in the PAH/PH community call a PHighter. Little babies are resilient. Your little man is no exception!!
Woah why would you make them worry for their baby’s future like that? Like I know there’s a hopeful message attached, but that’s…. They’re already facing such a long recovery and so much uncertainty.
@@maddiedoesntknoI think the point was that Oliver won't be needing any transplants. And reassuring Elyse & Jonas that Oliver has a rosy future as a healthy little boy, thanks to their recent trauma (of Oliver's life-saving surgery).
Oliver’s VSD was caught fairly early and medical science has brought things like various heart surgeries miles forward in even relatively short decades. There is lots of hope for him ❤
@@maddiedoesntknoThis is a " YES, - AND" sort of acknowledgement. The difference is technology and medical advances, true. Outcomes may vary, and probably have improved for kids-these-days. Having surgery earlier saves lives while lessening damage over time, AND being a congenital heart patient * is a lifelong health factor to consider. ( I also was born with AVSD, atrioventricular septal defect, and my parents learned early, but the doctors said it was safer to wait till kids were bigger to do open heart surgery. It was patched in the 80's when I was 5. Dr.'s can now do surgery when a child is 5 *months old with more precision. That's huge. Even so, dental work, or any infections that reach the blood ARE a risk for congenital heart patients, and DO require care.) Being conscious of this is a reality. Making peace with it, just as any chronic illness, allowed me to manage it better and admit when habits might've needed changing as an adult. ( As a child, people said I was, " good as new"/ my heart was "bionic", but that overconfidence led to lots of mistakes, which could've been prevented with a more thorough understanding of what to be aware of.) ** Also, it would've been good to know earlier that neurodivergence and migraines are often co-occuring genetically/ and/ or due to circulation for people with these conditions, but now that I know, it feels less frustrating, just part of the package.
I just cried and cried and cried through this video. Mom of two boys- both healthy so far (19 and 9) and just being a mom… felt every second. Thank you for letting us in like this. So happy all went well. You’re such a wonderful human, Elyse.
The flip flopping back and forth you’re explaining, I’ve never been able to put it into words. And it’s like WOW! Someone else has this brain too and we’re all gonna be okay because other people are functioning like me and they’re doing the damn thing too. Ugh I just love listening to your videos. Thank you. And so glad your family has moved into this next season of healing!
Oh mama, my eldest had open heart for a BIG ASD in 2018 and I can understand EVERYTHING you are saying. He is now a CRAZY active, football playing, amazing 8 year old. What an adventure and a gift and a trial all in one, from one heart warrior mama to another, I can understand every emotion ❤
You said the surgeon said 'of course' to the hug and Idk why I just started bawling. It took me right back to that moment for me when my babies had surgery. I'm so glad he's doing so well. Take care of you. It hit me so hard like 2wks later.
My baby has never had surgery and I was bawling through this video too. Just so hard to live in a world where babies can have holes in their hearts, and so good to live in a world where those holes can be fixed
As a mom of a child who was in a similar situation I totally relate with the feelings of up and down. My daughter had brain surgery for a tumor and all the feelings are so true You go back and forth and waiting during the surgery and after the surgery. You are so valid!!! She was almost 2. You are amazing doing so well! I remember her doctors saying you will remember more than they will and they bounce back so quick. It’s us that takes longer to bounce back. I was always waiting for the next shoe to fall! She is now 19 and has no recollection of anything but I can remember every single thing. Hugs mama. I know how you feel and know this new normal will be so good! Hugs and know you are doing amazinf
My son had to be in the hospital for 3 weeks due to a serious and life threatening illness. At the time, I was 17 weeks pregnant with our second son. One thing I was not prepared for was the phase you are in which is the healing at home with meds. My brain kept telling me (at the hospital) that if I could just get him home, things would be good. But you do lose the sense of security that you had at the hospital bc you don’t have anyone telling you if you’re doing things right and if your child is continuing to heal. The medicine schedule and process was grueling for us. This happened almost 3 years ago and we are just getting to the point of feeling good and “clear” in the way we talk about our son’s illness. It is overwhelming. Just know, you are doing so good momma! You and your husband are exactly who Oliver needs on this journey. Allow yourself to feel all the feelings but just don’t live too long in the sadness. Praying for you ALL as you heal at home.
Mama all of these feelings make complete sense. I hope you’re giving yourself as much compassion as possible throughout all of this. I’m so happy to hear that Oliver is ok, but this transition is still so emotionally hard. It makes sense that the feelings are insanely complicated & intense. ❣️ hoping for continued good health for you & your family. 💐
Thank you so, so much for sharing this with the world when you didn’t need to share or update. You don’t owe the world anything but you sure are leaving a beautiful mark on the world by sharing your vulnerability. I appreciate your honesty especially regarding your mixed feelings. It’s nice to hear people admitting the mix of emotions during a crisis, trauma, difficult time, rather than pretending and showing people what we think they want to hear. Praying for Oliver, August, you, and your husband for all around healing and strength and release. You’re doing an amazing job as advocates and parents❤
If I could “love” your comment a million times I would ❤❤. Such a beautiful way to say thank you for the update despite “us” not being owed anything while also acknowledging her rawness and just genuineness is why we love her and her family both so much! We should all live JUST to leave a beautiful mark on the world. ❤Much love from another “unique random internet” stranger who wishes to pass on some love.
Our grandson had the same surgery and it’s an absolute emotional wreck. The text saying he was on bypass was a moment we will never forget. The fear, joy and invasive thoughts are so hard on your body. Prayers to all of you for continued healing.
So happy that Oliver is ok. I’ve had 3 open heart surgeries one when I was 2, another at 3 and one at 22. Plus 4 other heart surgeries. I’m turning 40 this year. Oliver was in good hands. But I’ve seen the babies all hooked up to a bunch of IVs and tubes attached to them. It’s a lot! Thank you for sharing your story!
You are SO allowed to be scared, anxious, sad, fearful...and happy. This was and IS traumatizing. I am so happy Oliver is home, I'm so happy you're all together, that doesn't mean you're not allowed to still process ALL of the emotions. You are SO strong, and amazing and a FANTASTIC mommy. ❤❤ sending so much love and all of the prayers ❤
Not me crying, remembering handing my infant to an anesthesiologist for a surgery. As a heart patient, and the mother of twin boys who both had surgery at 6 weeks of age (not for heart) I felt every single little part of this. It is terrifying to know your baby is having any surgery, but his heart. Elyse, you're my hero. I am ever so grateful to hear of the success of Oliver's surgery.
I just want to thank you for explaining anxiety in such a clear way. I understood every word and thought you shared. Your description of feelings was perfect. As a mom, a person with anxiety, and a patient… not heart… these words about gaslighting yourself touched my soul. You really do got this!!!!!
As a mom and a doctor I’m sending a big hug. It’s so helpful for others to see what it is like to go through this and normalize your emotions, you are a great mom.
I think your self-perceived lack of eloquence communicates well the confusing fluctuation of emotions and feelings of overwhelm. I think talking through and around your experience while trying to find the right words in itself may express what you’ve been through more fully than the perfectly crafted speech could. I don’t have kids so I can only imagine what you’re going through, but saying you were gaslighting yourself perfectly captured the way I’ve felt while loved ones were hospitalized. Your self awareness is A++. So glad Oliver’s surgery was a success. Keeping your family in my thoughts. ❤
As a fellow heart mom, thank you for this video! My daughter had her open heart surgery 2 years ago and I have never heard a more accurate explanation of the emotions that happened that day better than you just laid out. The conflicting emotions/expectations are debilitating and even harder because you have to just keep going for your kids. Thank you for sharing this and know that there is an army of heart moms out here who hear you, support you, and completely understand what you are saying.
Your explanation of what is going on with your son could not have been more beautiful. Your raw humanity and the depth of your love shine through and that is stunningly beautiful.
I was doing fine until the surgeon was not only ok with the hug but didn't let go until you did. That's amazing right there. Made me cry. Love to you all.
Thinking of you! I went through this as a single mama at age 19. Your feelings are completely valid and it’s great to go through all the emotions. It helps you heal a lot better! 💕 Prayers of healing and health for you all! Children’s Omaha Cardiology is amazing; their entire team is phenomenal!
I just have to say, it’s so refreshing to hear the good and the bad and all of your emotions you felt. It makes the rest of us feel so seen compared to most content creators who make everything seem “so perfect” all the time.
Thank you. Thank you. Thank you. I am a heart mama and I’ve felt all of these feelings a million times over and no one in my life understands. For the first time in almost 4 years I feel understood
My daughter had her first OHS at 2 weeks old, she had her second OHS at 2.5 yrs old. The first surgery she was hospitalized for 36 days. For the second surgery she was in and out in like 4 days and her first 10 minutes home she laid on her belly rolling around on her freshly closed sternum trying to get a goldfish that fell under the couch. 😳 I was screaming inside but she was acting like it was a normal Tuesday. 😅 It’s insane how resilient these kids are. ❤ it is for sure an emotional rollercoaster for us parents, stay strong Mama! ❤
One heart mom to another you nailed it. All the emotions are so very complicated that I wasn't able to put into words or comprehend what was happening and you validated everything I've felt. Thank you for that.
There is no easy way to explain the anxiety, fear, happiness, joy, worry, thoughts racing about the future, being present for the healing… Yeah, it’s a roller coaster. I’m very happy for you and your beautiful family! 💕
I absolutely get the feeling of not being sure how to feel. My daughter had a craniotomy at 10 yrs old for a brain tumor. It was the most horrible and best experience of my life. I've never felt more helpless and thankful at the same time. She's 13 and driving us crazy now with her teenage antics. It gets better.
"We just gotta sort the pressures out." That phrase feels both literal and figurative. It's been a lot and it's okay for it to take you time to process it and feel it all. Hang in there!
Parenthood forces us to hold two opposing emotions in the same breath. Both are true. Both are valid. Wisdom is giving them both equal space. You are relieved/grateful/ecstatic that his surgery went well and truly devastated that he had to have open heart surgery. Thank you for posting this and being vulnerable showing us both truths.
So beautifully put 💙 praise God, my child has not had any medical issues, but have felt the two opposing emotions in the same breath many times. Especially during the newborn phase.
“Why do I feel like it’s not good?” Because that’s your son. That’s your son that just went through a major surgery, and you’re also traumatized because there were no warning signs ahead of time. You’re probably guarding your own feelings by not letting yourself believe it’s going to be okay. That’s a valid feeling. You guys are going to find your new sense of normal soon. I’m glad everything went as well as it could. ❤️
Hi, I’m an OR Nurse - like the one who sent the text. In our charting system that we use to notify the family via text we have some automation as well as prewritten commonly used texted to send ( for ease of use, quick, standardized text) that kinda gets the job done of notifying the family. But once I have the time ( because something things area crazy busy and we can’t call, then we have those text that definitely comes in clutch to send an update out) I always try to call instead- I feel like updates land better over call. And when I can’t call but can spare a min…. I custom the message( we have that option too) instead of sending the pre-populate “ the patient is doing well” “ surgery has started” . I’m glad you shared your perspective on the text message updates. Makes me feel like I’ve been something good for my patients. Because I’ve always felt them to be distance. Ps. Going on bypass is a high stress step for cardiac procedures….so totally get the use of the prefilled text. Sometimes we get soooo busy we don’t get to update.
I learned a long time ago that you can be really happy and really sad at the same time. It sounds like you are grieving the loss of the life you thought you were going to have with your baby but also immensely grateful and happy that you still have a future that includes him in it. Sprinkle some anxiety on top and you’ve got a rollercoaster of emotions. Take care of yourself my friend ❤ healing is hard
PLEASE give yourself some grace. You gave birth only 5 months ago and have been dealing with all of the VSD. My son, now 41 years old was also born with VSD. He did not ever need surgery, his closed on its own when he was in his 20s. I remember so vividly when the pediatrician came into the hospital room as I was preparing to be discharged and started talking about a murmur most likely VSD - a hole in his heart! I became so distressed, that my OB arranged for me to stay with my baby. And they were talking about EKG (I didn’t know what that was) and that brought me to sobs. You’re shifting from joyful gratitude and the realization of the gravity of the situation. I think you are an absolute warrior queen. Sending all the positive energy to you. You’ve (and Oliver). Have got this!! ❤
I'll never forget something that the surgeon who did my dad's kidney transplant said-- you may not have been cut open yourself, but the family goes through a different type of trauma, especially during long surgeries or serious hospital stays. Take the moments for a break or a walk or a coffee when you need them. Don't let them pile up until you're under so much weight that you can't breathe. It's okay to need those moments, to take that deep breath and think about something else for a second or two. So glad the surgery went well!!
Thank you so much for sharing! Our son was in a motorcycle accident on December and had brain surgery. He is a walking miracle and when you said , you just got used to him being sick and now he’s better and you weren’t sure what to do with that. I have been in my own head and depressed and couldn’t figure out why and you saying that flipped a switch for me. Thank you so much for sharing!! And God bless you all and complete helping for baby Oliver!
I can’t reach through the screen to give you a hug, and no emoji is good enough. So much of your story took me back to my son’s first heart surgery. (He’s had 2/3, and the first was the longest and riskiest.) I kind of can’t imagine getting updates every hour. I guess some people probably find that helpful? I don’t know if I would have wanted them. They weren’t offered to us, and we didn’t ask. My husband was with our older two when I went to get coffee after our son was taken to the OR. I didn’t have your husband’s experience of breaking down talking about the surgery because I wouldn’t let myself say it out loud. Part of me wanted to, but I knew that breaking down is exactly what would happen and I didn’t have anyone I knew right there, so it just wasn’t going to happen. It was undoubtedly the longest, most stressful six hours of our lives. He’s so good now, and it was so stressful and uncertain then, and both of those things are true. Don’t beat yourself up too much about the conflicting emotions. They’re so, so normal. Wishing all the best for your family and especially for Oliver ❤
Thank God. I'm so proud of you for processing this, even publicly. We are here with and for you. Oliver has many, many internet aunties. Love your little family 💓
I'm in tears. And I get it. 100%. My husband had OPS (quad) at 65 and all the feels w/Oliver are the same. "Survivor's guilt"....omgosh I didn't have those words. I needed those words. 😭😭😭😭 Personally, I don't think a f/u video is needed. This was perfect. It was enough. It was everything!!! Stay blessed ❤🙏🙏🙏
It's been 30 years since my daughter had open heart surgery to repair a large Vsd, your description of events is right on target. It's hard to be a mom, but your are rocking it!😊😊❤❤
Thank you - No one ever felt me more safe than the Cardiac surgeon we had for our son's VSD repair. When he did the pre-op appointment it was calm and peaceful. Also, I brought a puzzle and went into a bubble and didn't emote which enraged my husband for not caring about our baby in surgery. I barely finished the boarder of the 1000 piece puzzle before they called me over. You are right...there is nothing you can do to alter the goings on in the room so why stress yourself to the point of tears or panic.
First of all, I'm so happy to hear he is out of the woods and doing well. As a pediatric home care nurse, I recommend looking into home Care nursing if you have not already. It can be really overwhelming and you have another child to think about as well. Having somebody there to keep the medical aspect on schedule, somebody to sit awake in the room at night to make sure he is okay and monitor his vitals, ECT can relieve a lot of stress and pressure. Also just remember it is your home and your child so if you get assigned a nurse that you're not comfortable with you can just call the agency and say no thank you and they'll try to send you another one. You guys are going to do great and he is so lucky to have you.
Thank you for your openess and vulnerability and for making the important things in your family that should be private, private. I respect the heck out of you and always love your updates.
I am an open-heart surgery baby and it was hard for me to watch this video. I can't even imagine how you are feeling. I think that you are still sad because you are processing everything but also because it is extremely hard to see your little baby on a hospital bed with wires and plug and medical tape all over. When i look at my baby hospital pictures i am so sad for my mom who stayed by me the whole time. You are not alone and everything you are feeling is normal and okay. ❤️ I am sending so many healing vibes ❤️
I think you explained it perfectly. You didn’t even get a chance to adjust to bad news before there was good news before there was bad news before there was good news. I’m sorry for the whole situation but glad it turned out as well as it did. May he continue to recover well. Modern medicine is truly a miracle.
Thank you so much for sharing. Crying happy tears for you guys. I was a preemie, it’s illuminating thinking of how my mom dealt with my 3 mo in the NICU. You’ve helped me to appreciate her even more!
I identify with every moment of your video- I experienced it all 20 years ago with my own son. You will be forever grateful and forever worried- you just learn to put those worries away in the back of your brain so you can function. Life is good and he will will thrive (and so will you!).
Love how honest and raw you are. Thank you for being who you are and talking about the hard things so others can resonate and not feel alone either! You are amazing!
Finally watched this after avoiding this video. My daughter had open heart surgery at 2 weeks old for VSD, ASD, and aortic coarctation and I am terrified of reliving that experience. But I am so glad I watched. "Every hour was the best and worst hour of my life" is so exactly how it felt. Thank you for sharing your experience. It helps hearing the complicated, and often disagreeing, emotions from someone else who has lived it. My daughter is now a very healthy 2.5 year old! I'm so glad Oliver is doing well!!
Our daughter’s surgeon gave us the rundown…..all went well, blah blah blah. Then, as an afterthought he said, Oh, we didn’t need any of the blood” (my mom & a family friend had direct donated) and I BURST into tears. Not needing blood is what broke the dam for me. Surgeon just looked at me like I was cuckoo. (I mean I am, but that’s just chronic) Thirty years later, she still has not had a blood transfusion. His heart has been through A Thing. The waiting is the worst. You’re now in the six weeks of healing wait. You’ll be in the let his little heart become a bigger heart wait. It needs to adjust and that requires patience. And when your kid is sick, you have little patience for the time to recover to pass. Give yourself grace.
Thank you for being so honest .. it will help others who share those same feelings … Fear that our children will be ok … guilt that our children are ok when others have a different journey… Joy when we get to celebrate the wins !!! Celebrate the wins … it’s ok !!!❤❤❤❤
I spent many many years in and out of the hospital as a child for surgery to get rid of / shrink the same thing. I ended up having 10 surgeries between the ages of 5 days old and 15 years old. One of my fondest memories..... one of the things I remember the most was how my mom and dad were there for me every single time without fail. My mom went with me to all of my appointments and scans and my dad was always there with me when I woke up from surgery. They are cherished memories and I am so grateful that both of my parents took care of me and supported me the best they could. Your son will remember that. He will remember how you and Jonas were there for him and took care of him, and as he grows up, he'll be so so grateful. It's really hard to be a mom now with a child myself who suffers from a medical diagnosis but with my history of being in their shoes, I have been able to take care of my child and love them through it. You guys are awesome!!
Hi! Watching this video brought back many feels. My husband has needed two large surgeries for cancer, and I can tell you that your feelings are absolutely normal - not that that makes it any easier. Take it one step at a time - the good feelings will come back, I promise.
I can so relate to your experience. My husband had his second open heart surgery on 2/3/2022. He had his aortic heart valve replaced. He’d had his first surgery on 9/21/1991 and they were able to repair an aneurysm on his aortic heart valve. We found out, at age 25, he’d had this aneurysm that occurred due to endocarditis that happened after a strep infection that got into his blood system. We also discovered he’d had a birth defect in his aortic valve since birth. He was born with a bicuspid valve instead of a tricuspid valve. His repaired valve did great until almost exactly 30 years to the day of his first surgery. He had minor leakage around the aortic valve and had to take blood pressure meds daily but basically was the picture of health for 30 years. He annually had checkups with his cardiologist with appropriate testing as needed and everything was great until his checkup on 9/23/2021. During his echocardiogram they discovered from one year to the next he went from a healthy valve to critical aortic stenosis! He made it through his second surgery and we’re thankful we didn’t delay because the surgeon said his valve crumbled into bits when he went to remove it. The funny thing is my husband had absolutely no symptoms of critical aortic stenosis. He even split a cord of firewood, loaded it in his truck, delivered, unloaded and stacked it two days before his second open heart surgery with this critical aortic stenosis!!! He did have AFib after his surgery and had to have cardioversion (shocked his heart) to put his heart back into the correct rhythm. He was on medication for 6 months and now he’s off the medication for the AFib and only takes two different BP meds and is on Coumadin now for the rest of his life. I know Oliver will get through this and grow into a happy healthy little boy. He will learn how to keep his heart healthy and that he must see his cardiologist for the rest of his life to keep it healthy. Small price to pay to fix his little heart if I’d say so. Hug Oliver tight and listen to his heart beating strongly now. 💗💗
You are brave and beautiful. There isn’t ever gonna be a ‘back’ to normal just a continuation of life and the whole ride just moves forward. The best news is that you are already showing amazing skill at the twists and turns. Things will level out and the whole community you’ve been blessed with is cheering all three of you on!
You make sense Elyse. You've described emotions perfectly. They swirl in a kaleidoscope of craziness all at the same time. So grateful to hear Oliver is recovering from surgery and that you are home. He is connected to a spiritual oneness and unseen support system that is not connected to the human tragedy of all you've been through. Yes, his little body is healing, and his soul is always safe. It's challenging to connect with our inner wise old soul that is the peaceful part of you when there are so many scenes, emotions, people and stories to process. Trust your inner knowing. Allow yourself moments to connect with that part of you and the noise of everything else will subside more quickly. Sleeping is healing. Napping is good. 30 seconds of meditation is gold. Let people be there for you and ask for more hugs and holding to calm your nervous system. ❤❤❤ We see all is well.
My oldest son, also named Oliver, was born with an autoimmune blood disorder that causes him to have extremely low white blood cell counts specifically neutropenia and anemia. This in turn led to many, many, very scary infections and hospital stays in his early years. I felt like I was always on guard and that even when he seemed to be doing so much better I couldn't let me guard down. He is now 13 and still has to deal with complications from his blood disorder but is doing really well! I don't think you ever lose that "something bad could happen" feeling, especially as a mom. It has forever shaped me as a mom. I completely related to that " everything is going to be ok, but doesn't feel ok" feeling. As their mom we feel so responsible and like we need to be ready and aware at all times. it WILL be ok and you DO have this but its totally OK to feel all over the place and unsettled. It does take time, and lots of patience and grace for yourself as you settle into this new normal. We're praying for your entire family and I love seeing all the updates! Hang in there and if you ever need to chat or vent feel free to message me!
I had open heart surgery 6 weeks ago. Diagnosed with Hypertrophic Obstructive Cardiomyopathy in Oct of 23, on halloween. I had massive hypertrophy in my left ventricle, causing mitral valve regurg, pulmonary edema, pulmonary hypertension, heart failure, a LONG list of issues. I was at huge risk for sudden cardiac arrest. I am a 39 year old mom of 4, ranging in age from 6 to 16. There's nothing like teaching your kids to do CPR on their mother. So much of what you experienced, I experienced from a different perspective. Recovering has been the worst and best days of my life. Being in the ICU for a week, having to have a pacemaker put in, having 30 tunes coming out of my body, the pain.....it was awful. But, I get to live. It saved my life. Things escalated quickly once I saw a specialist after my diagnosis and he realized how bad it was. I went from normal to your heart could stop at any time. It was like a whirlwind. To go from good to bad so quickly it felt impossible to wrap my head around. After surgery, my amazing, very experienced surgeon told me I had the worst hypertrophy he'd ever seen. He caused a VSD because my obstruction was so severe. He had to call in a second surgeon. He said my surgery was a nightmare and I would not have survived if I had been older. Trying to be grateful through the hard days was tough. Trying to keep up with the whiplash of change was exhausting. I cannot imagine feeling those feelings for a tiny human. Prayers for your family.
What an INCREDIBLE story. I know while you’re in it… it’s a full on tornado where you’re in the center watching n feeling EVERYTHING all at once… but you now have a truly INSPIRING story to encourage others who can’t articulate what they are feeling. Being able to articulate n process the way YOU do is half the battle in the process! Thank you for being able to speak and clarify each moment when the rest of us can not! That in and of itself is crazy powerful. And lil mister Oliver has such grit and full on MOXY to his story. He will forever be a superhero! In his lil brain… he ONLY knows how to OVERCOME🙌🏼no fears, he didn’t question he just kept his lil perfect attitude (inherited by you n Jonah) to just be in the moment as you were on the other end! As a mom of four, who are all in their twenties, each child is SO very different!!!! Each one has their OWN set of obstacles… n your heart gets kneaded until you just become numb… but here’s what I’ve learned… EVERY storm runs OUT of rain… n for me n my faith… just knowing God loves our babies even MORE than we do n he has a gigantic plan so far greater than we can wrap our lil brains around, and it can ONLY be good… because if it’s not good then he’s not done with it yet! And all the prayers you’ve received and have on such a huge scale… should be a blanket of peace over you. So glad he’s well, so PROUD of you n your husband and so grateful for such an inspiring story being told🙌🏼 YOU GOT THIS!!!!!!
I'm snuggling my miracle 7-week-old baby boy watching this and just bawling. I can't even imagine what you and Jonas have gone and are still going through. I had a traumatic birth but it's only traumatic for my husband because I and baby boy don't remember it and I feel so bad that he had to go through it alone and is the only one with those memories. 😫 So so glad Oliver is on the mend and you've got each other and I hope August is handling it well too, as confusing as it is for a toddler. ❤❤
that is such a huge thing for your family to go though, so glad he’s ok! like others have said, kids are super resilient, we’ve evolved to still develop after birth, oliver just had an extra side quest! i’ve met and heard of a lot of people with this condition, including my cousin. she lives a normal life as an adult aside from the discovery of the hole and surgery, along with maybe taking it a little bit easier than the other kids when she was growing up!!
you have explained everything beautifully already. I'm so grateful also for Oliver's amazing surgery and care. He's a lucky baby to have such wonderful parents who are able to provide him with what he needs. I can imagine it's been unbelievably scary and that would account for so many ups and downs once the 'problem' is fixed. Sending you and your family a huge hug, from a Mom and Grandmother in Canada
Recently I have been having so many dreams with Elyse in them and I am not a person who usually wakes up and remembers my dreams. But when I wake up and I remember she was in my dream every time and I get this huge feeling of warmth and like she is giving me a hug filled with compassion, I don’t know how else to describe it. So you have been deep in my thoughts Elyse and I wanted to say thank you for making myself and others feel like we aren’t alone.
My son had brain surgery six years ago at 20 years old. He’s fine now and stable. I still have moments of feeling and understanding everything we went through. You will too. Please dont forget you’re still stabilizing your pregnancy hormones and caring for yourself and your toddler. Your beautiful complex brain is driving you thru what needs to get done safely. Your beautiful heart will help you navigate the emotions as you can handle it❤
This is all fresh and new and you're still processing. You will heal as he heals. Today, it's all about the surgery. Tomorrow, it's 99% about the surgery and 1% about how cute he is when he smiles. And next week, it's 90% about the surgery and 10% about his poopy diapers. And by summer, it's 5% about his surgery, and 95% about him just being your healthy, happy baby.
soo perfectly captured!!
_Very_ well said.
That's a great perspective.
Thank you for sharing that beautiful perspective!❤
❤ I love this. That's a really great way to look at difficult things thank you for sharing ❤
hearing “of course” from the surgeon when you asked to hug him… that is what makes a good doctor. wow
Fear can really mess with your head. Hope he heals quickly. You are a great mom. He is lucky to have you!!
Yes. That's when I cried. ❤ I'm sure he needed it too; of all the patients he's going to work on, he had to be under so much personal pressure to give this baby a chance at a healthy life.
My obgyn hugged me so hard when I found out I was pregnant again. It really means the world having a good doctor 🥹❤
I am a paediatric cardiologist in the UK And this was one of the most beautiful explanations of being a heart mummy I have ever heard. I have no doubt this post will help so many other parents
A cardiologist (among many others) saved my mom's life, and I am so very, very, very, grateful that there are people like you, thank you so much for all the extremely hard work you put in your whole life to do what you do. Really, thank you so much!
100 percent helped me feel validated when my son was going through this, thank you.
My 19 year old daughter had open heart surgery for her ASD/VSD at 5 months old. It was on a Wednesday and we were discharged on Saturday. Your video brought back so many feelings! We even had a similar experience in the cafeteria! She has been a swimmer since she was 8 and has zero restrictions after surgery. You got this (and so does Oliver)! I actually went back to school after the whole experience and am now a NICU RN.
Thank you for sharing ❤ I am a Perfusionist (person who runs the bypass machine during open heart surgeries). It’s not often I get to see or think about the effects of what I get to do everyday at work on those who we are operating on. I am so appreciative of you sharing your emotions and experience throughout this. I needed this reminder of why I do what I do. Sometimes I can get tunnel minded and often don’t remember the effect we are having. I love getting to help families like yours ❤ Hoping Oliver continues to get stronger every day!!
Thank you so much for all you do for us heart patients! I’m 31 but had 2 open heart surgeries when I was 24 and 25 and will need more throughout my life. You are a blessing ♥️
❤❤❤❤❤❤❤
Thank you for all you do! ❤
I didn't even know that was a specific occupation. Is a perfusionist trained as a nurse? Something else? Thanks for playing a special part of lifesaving surgery.
You’re amazing, thank you for caring for people who need the extra help 😎🙏🏽
So happy to hear Oliver is going to be okay. Sending Big Hugs from the Hobbit Hole. ♥♥♥
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I love your art! Specially of women. ❤ glad you know and love Elyse too! 😊❤
Scott?? Wasn't expecting to see you here, but i love seeing your empathy
Such wonderful news! Prayers continue for Oliver's uncomplicated healing!!! And for you guys to get the calm center of life back in your home, and nervous systems!❤
You were stressed over this for so long, your body needs a little time to adjust to being happy and relaxed. Once you get some good sleep, you will hopefully lose the sadness. I am so glad he is doing well.
Your body isn't done processing the chemicals from the first batch of emotions before another wave of big feelings hits. Give yourself some grace. Things will level out. You are a warrior.
From a pediatric cvicu nurse, you are doing amazing. Thank you for sharing when you didn’t have to and spreading awareness to CHD.
I saw your Pumonary Hypertension binder . Our daugher was diagnosed at 5 months old and she is now 10 years old. If you ever have questions, I am happy to help. PH is really rare. From one cardiac mom to another you are doing an AMAZING job!
Thank you for the update. I have a coworker who has a son who went through this almost 30 years ago, and her son is 30 and is in great health. He volunteers at a camp for cardiac kids every summer, and he loves knowing that a surgeon saved his life when he was so little. So grateful for Ollie!
The emotional let down is enough to make you feel like you’re spinning in circles to make sense of what just happened. It’s a massive experience that takes its role on your body. Feel your feels. And let yourself know it’s alright to feel it all. The more you’re kind to your self, accepting it all, the quicker you’re going to balance out. I’m so proud of you. You’re just so good and kind and real.
Yes, yes, this! Just because you're in a better situation now doesn't mean you have fully processed everything you've been through. You've probably not processed it at all just trying to get through it!
Sending love and prayers your way. Yep, it's a LOT of emotions. You're doing so great sharing and feeling them all. Big hugs to you and your beautiful family.
I'm so glad Oliver is doing well.
This is so well said ❤
Words cannot describe how thankful I am to you for this video, but I will try. When you said that you were "gaslighting yourself" I just broke down. I had open heart surgery at 50 for a double bypass. You explaining how you feel and the back and forth of your emotions was exactly what I have been going through. I have never heard anyone explain it like you did and didn't realize that this is what I was doing to myself. I haven't quite been able to forgive myself for al l the trauma I caused. I want you to know you are not alone. PTSD is real and manifests its self in really strange ways. You will get through this and so will I. Love to you and your family. Oliver is so lucky to have you.
My son had to have his entire colon removed. After weeks of being in an out of dr.’s offices and multiple hospital stays suddenly he was having surgery. It was on a Saturday and I arranged for friend to be there with us. The minute I walked into the waiting area and saw my friend, I completely collapsed in her arms. It was like finally I could let go of the emotions I was keeping locked up. What you have gone through is one of the hardest things you will ever experience. Be kind to yourself. Also consider counseling and find support groups for your son’s condition. Have a people that share your experience is priceless!!!!❤❤❤❤ My son was 18 when all this happened to him and today he’s 24.
I’ve had my entire colon removed too recrum included. I can’t imagine how scary it was to suddenly need that done!
That must have been absolutely terrifying. It’s totally normal that your body is now needing to process all of that terror. Be kind to yourself regardless of the competing thoughts going on. You’re allowed to process whatever feelings are happening in your body without needing to explain them. I’m so happy Oliver is ok. Thank you for updating us.🫂💜💜💜💜💜💜
I work in a Cardiac Surgery office and your reaction to this whole thing and the conflicting feeling is 100% natural and normal. You're never alone in something like this even though it feels like you are. And thank you for sharing this with all of us! I know this will help other parents in the future.
This is so kind 😭 thank you so much for your encouragement, it means the world to me!
The floating feeling about living in the happy news for a minute is everything & the cashier was a beautiful soul. Thank goodness for people like that. & a surgeon who hugs you is just so spectacular. I’m weeping. (Mother-Baby RN here btw). Thank you for the sharing.
From a fellow mom of a CHD kid and former RN - it’s ok have ALL the feelings. It’s so SO normal to experience the emotional pendulum. Give yourself the grace to feel it all. You’ve got this! And glad to hear Oliver is on the mend!
I'm 53 years old and my brother's 51 and he had surgery as an infant under 6 months of age and it has a huge scar on his upper abdomen lower chest. It was a major surgery and traumatizing. I'm sure for my mom and dad, but I'm here to tell you that neither one of us think about it for a second other than my brother had a cool scar and a cool story to show and tell when we were kids. Hugs to you and the family
“And that is good, so why do I feel bad” really hit home for me. My son spent 32 days in the NICU. He’s been home for 6+ months now and I still have days where I cry about the times when he wasn’t okay.
It’s not a surprise to those of us who have been watching you for years, but you are a great mom. ❤
These sweet people make hospital trials so much , not easy, but are a comfort.
Sure, the _sweet_ ones do. 😀
But, the callous, cold ones! You want them to die so they cannot hurt or neglect your child!
If the medical staff are all the Good kind of people, then thank God.
If they aren't, they have not just hurt the baby, but (less important) they have made the parent Hate them enough to kill them.
A human Being being driven up to that level is an injury they don't recover from, no matter how small because they can always reach that level of Rage again.
(Notice I spelled that "Hate" with a capital "H".)
But again, if the child's is harmed or helped is most important.
@@TheNoiseySpectator you're talking to someone who has medical ptsd from a stay that cause 3 extra surgeries and 2 broken bones. I had some awesome people as well but at two other hospitals.
What a gracious surgeon to let you hug him after everything went well. That probably made his day as much as it made yours. You've been through so much. I'm glad you're listening to how you're feeling and that everything turned out well. Remember to take it one day at a time and know that your family is so strong and beautiful!
Else and Jonas, I was born I'm 1987. I was born healthy but started getting sick at 6 months old. Noone knew why. But when I was 4 years old, after a horrible few days, I was diagnosed with an ASVD and Pulmonary Arterial Hypertension. I am now 37 years old. I lived a long life and now I'm being told I need a heart and lung transplant.
Your little Oliver is what we in the PAH/PH community call a PHighter. Little babies are resilient. Your little man is no exception!!
Woah why would you make them worry for their baby’s future like that? Like I know there’s a hopeful message attached, but that’s…. They’re already facing such a long recovery and so much uncertainty.
@@maddiedoesntknoI think the point was that Oliver won't be needing any transplants.
And reassuring Elyse & Jonas that Oliver has a rosy future as a healthy little boy, thanks to their recent trauma (of Oliver's life-saving surgery).
Oliver’s VSD was caught fairly early and medical science has brought things like various heart surgeries miles forward in even relatively short decades. There is lots of hope for him ❤
@@maddiedoesntknoThis is a " YES, - AND" sort of acknowledgement. The difference is technology and medical advances, true. Outcomes may vary, and probably have improved for kids-these-days. Having surgery earlier saves lives while lessening damage over time, AND being a congenital heart patient * is a lifelong health factor to consider. ( I also was born with AVSD, atrioventricular septal defect, and my parents learned early, but the doctors said it was safer to wait till kids were bigger to do open heart surgery. It was patched in the 80's when I was 5. Dr.'s can now do surgery when a child is 5 *months old with more precision. That's huge. Even so, dental work, or any infections that reach the blood ARE a risk for congenital heart patients, and DO require care.) Being conscious of this is a reality. Making peace with it, just as any chronic illness, allowed me to manage it better and admit when habits might've needed changing as an adult. ( As a child, people said I was, " good as new"/ my heart was "bionic", but that overconfidence led to lots of mistakes, which could've been prevented with a more thorough understanding of what to be aware of.) ** Also, it would've been good to know earlier that neurodivergence and migraines are often co-occuring genetically/ and/ or due to circulation for people with these conditions, but now that I know, it feels less frustrating, just part of the package.
I just cried and cried and cried through this video. Mom of two boys- both healthy so far (19 and 9) and just being a mom… felt every second. Thank you for letting us in like this. So happy all went well. You’re such a wonderful human, Elyse.
The flip flopping back and forth you’re explaining, I’ve never been able to put it into words. And it’s like WOW! Someone else has this brain too and we’re all gonna be okay because other people are functioning like me and they’re doing the damn thing too. Ugh I just love listening to your videos. Thank you. And so glad your family has moved into this next season of healing!
Oh mama, my eldest had open heart for a BIG ASD in 2018 and I can understand EVERYTHING you are saying. He is now a CRAZY active, football playing, amazing 8 year old. What an adventure and a gift and a trial all in one, from one heart warrior mama to another, I can understand every emotion ❤
You said the surgeon said 'of course' to the hug and Idk why I just started bawling. It took me right back to that moment for me when my babies had surgery.
I'm so glad he's doing so well. Take care of you. It hit me so hard like 2wks later.
My baby has never had surgery and I was bawling through this video too. Just so hard to live in a world where babies can have holes in their hearts, and so good to live in a world where those holes can be fixed
I've never gone through anything like this and also cried about the surgeon hug🥹❤️ powerful moment
As a mom of a child who was in a similar situation I totally relate with the feelings of up and down. My daughter had brain surgery for a tumor and all the feelings are so true You go back and forth and waiting during the surgery and after the surgery. You are so valid!!! She was almost 2. You are amazing doing so well! I remember her doctors saying you will remember more than they will and they bounce back so quick. It’s us that takes longer to bounce back. I was always waiting for the next shoe to fall! She is now 19 and has no recollection of anything but I can remember every single thing. Hugs mama. I know how you feel and know this new normal will be so good! Hugs and know you are doing amazinf
My son had to be in the hospital for 3 weeks due to a serious and life threatening illness. At the time, I was 17 weeks pregnant with our second son.
One thing I was not prepared for was the phase you are in which is the healing at home with meds. My brain kept telling me (at the hospital) that if I could just get him home, things would be good. But you do lose the sense of security that you had at the hospital bc you don’t have anyone telling you if you’re doing things right and if your child is continuing to heal. The medicine schedule and process was grueling for us. This happened almost 3 years ago and we are just getting to the point of feeling good and “clear” in the way we talk about our son’s illness. It is overwhelming.
Just know, you are doing so good momma! You and your husband are exactly who Oliver needs on this journey. Allow yourself to feel all the feelings but just don’t live too long in the sadness.
Praying for you ALL as you heal at home.
"The healing is hard." Pretty much sums it up. So glad to hear that he's doing well. Many hugs!
Mama all of these feelings make complete sense. I hope you’re giving yourself as much compassion as possible throughout all of this. I’m so happy to hear that Oliver is ok, but this transition is still so emotionally hard. It makes sense that the feelings are insanely complicated & intense. ❣️ hoping for continued good health for you & your family. 💐
Thank you so, so much for sharing this with the world when you didn’t need to share or update. You don’t owe the world anything but you sure are leaving a beautiful mark on the world by sharing your vulnerability. I appreciate your honesty especially regarding your mixed feelings. It’s nice to hear people admitting the mix of emotions during a crisis, trauma, difficult time, rather than pretending and showing people what we think they want to hear. Praying for Oliver, August, you, and your husband for all around healing and strength and release. You’re doing an amazing job as advocates and parents❤
If I could “love” your comment a million times I would ❤❤. Such a beautiful way to say thank you for the update despite “us” not being owed anything while also acknowledging her rawness and just genuineness is why we love her and her family both so much! We should all live JUST to leave a beautiful mark on the world. ❤Much love from another “unique random internet” stranger who wishes to pass on some love.
Our grandson had the same surgery and it’s an absolute emotional wreck. The text saying he was on bypass was a moment we will never forget. The fear, joy and invasive thoughts are so hard on your body. Prayers to all of you for continued healing.
So happy that Oliver is ok. I’ve had 3 open heart surgeries one when I was 2, another at 3 and one at 22. Plus 4 other heart surgeries. I’m turning 40 this year. Oliver was in good hands. But I’ve seen the babies all hooked up to a bunch of IVs and tubes attached to them. It’s a lot! Thank you for sharing your story!
You are SO allowed to be scared, anxious, sad, fearful...and happy. This was and IS traumatizing. I am so happy Oliver is home, I'm so happy you're all together, that doesn't mean you're not allowed to still process ALL of the emotions. You are SO strong, and amazing and a FANTASTIC mommy. ❤❤ sending so much love and all of the prayers ❤
My anxiety and PTSD are giving you a hug. This is a blessing and I pray for healing for ALL of you.
Not me crying, remembering handing my infant to an anesthesiologist for a surgery. As a heart patient, and the mother of twin boys who both had surgery at 6 weeks of age (not for heart) I felt every single little part of this. It is terrifying to know your baby is having any surgery, but his heart. Elyse, you're my hero. I am ever so grateful to hear of the success of Oliver's surgery.
I just want to thank you for explaining anxiety in such a clear way. I understood every word and thought you shared. Your description of feelings was perfect. As a mom, a person with anxiety, and a patient… not heart… these words about gaslighting yourself touched my soul. You really do got this!!!!!
As a mom and a doctor I’m sending a big hug. It’s so helpful for others to see what it is like to go through this and normalize your emotions, you are a great mom.
I think your self-perceived lack of eloquence communicates well the confusing fluctuation of emotions and feelings of overwhelm. I think talking through and around your experience while trying to find the right words in itself may express what you’ve been through more fully than the perfectly crafted speech could. I don’t have kids so I can only imagine what you’re going through, but saying you were gaslighting yourself perfectly captured the way I’ve felt while loved ones were hospitalized. Your self awareness is A++. So glad Oliver’s surgery was a success. Keeping your family in my thoughts. ❤
As a fellow heart mom, thank you for this video! My daughter had her open heart surgery 2 years ago and I have never heard a more accurate explanation of the emotions that happened that day better than you just laid out. The conflicting emotions/expectations are debilitating and even harder because you have to just keep going for your kids. Thank you for sharing this and know that there is an army of heart moms out here who hear you, support you, and completely understand what you are saying.
No, THIS was beautiful and so real and so appreciated. Thank you for sharing and validating the “ands” of life - scary AND beautiful.
Your explanation of what is going on with your son could not have been more beautiful. Your raw humanity and the depth of your love shine through and that is stunningly beautiful.
I was doing fine until the surgeon was not only ok with the hug but didn't let go until you did. That's amazing right there. Made me cry.
Love to you all.
Thinking of you! I went through this as a single mama at age 19. Your feelings are completely valid and it’s great to go through all the emotions. It helps you heal a lot better! 💕 Prayers of healing and health for you all! Children’s Omaha Cardiology is amazing; their entire team is phenomenal!
I just have to say, it’s so refreshing to hear the good and the bad and all of your emotions you felt. It makes the rest of us feel so seen compared to most content creators who make everything seem “so perfect” all the time.
Thank you. Thank you. Thank you. I am a heart mama and I’ve felt all of these feelings a million times over and no one in my life understands. For the first time in almost 4 years I feel understood
Another cardiac mama here to say ❤❤❤
My daughter had her first OHS at 2 weeks old, she had her second OHS at 2.5 yrs old. The first surgery she was hospitalized for 36 days. For the second surgery she was in and out in like 4 days and her first 10 minutes home she laid on her belly rolling around on her freshly closed sternum trying to get a goldfish that fell under the couch. 😳 I was screaming inside but she was acting like it was a normal Tuesday. 😅 It’s insane how resilient these kids are. ❤ it is for sure an emotional rollercoaster for us parents, stay strong Mama! ❤
He was so proud of you, the doctor! He knew he needed to be there in that moment
I think you became a viral vlogger so Oliver would get like, a million prayers up to heaven ❤
SO GLAD he is OK ❤
I am so glad the surgery went well. Heal up little Oliver 💕
I’m a heart mom, my guy was 6 weeks old when he had his COA repaired. Thank you for sharing your experience. It’s not easy.
One heart mom to another you nailed it. All the emotions are so very complicated that I wasn't able to put into words or comprehend what was happening and you validated everything I've felt. Thank you for that.
There is no easy way to explain the anxiety, fear, happiness, joy, worry, thoughts racing about the future, being present for the healing… Yeah, it’s a roller coaster. I’m very happy for you and your beautiful family! 💕
I absolutely get the feeling of not being sure how to feel. My daughter had a craniotomy at 10 yrs old for a brain tumor. It was the most horrible and best experience of my life. I've never felt more helpless and thankful at the same time. She's 13 and driving us crazy now with her teenage antics. It gets better.
AN EMOTIONAL SUPPORT COFFEE!! That is totally what my coffee everyday is for!
"We just gotta sort the pressures out." That phrase feels both literal and figurative. It's been a lot and it's okay for it to take you time to process it and feel it all. Hang in there!
Parenthood forces us to hold two opposing emotions in the same breath. Both are true. Both are valid. Wisdom is giving them both equal space. You are relieved/grateful/ecstatic that his surgery went well and truly devastated that he had to have open heart surgery. Thank you for posting this and being vulnerable showing us both truths.
So beautifully put 💙 praise God, my child has not had any medical issues, but have felt the two opposing emotions in the same breath many times. Especially during the newborn phase.
“Why do I feel like it’s not good?” Because that’s your son. That’s your son that just went through a major surgery, and you’re also traumatized because there were no warning signs ahead of time. You’re probably guarding your own feelings by not letting yourself believe it’s going to be okay. That’s a valid feeling. You guys are going to find your new sense of normal soon. I’m glad everything went as well as it could. ❤️
Just proves the best videos are near & dear to your heart. Beautifully said momma bear, Oliver is thriving under your parenting, no doubt!
Hi, I’m an OR Nurse - like the one who sent the text. In our charting system that we use to notify the family via text we have some automation as well as prewritten commonly used texted to send ( for ease of use, quick, standardized text) that kinda gets the job done of notifying the family. But once I have the time ( because something things area crazy busy and we can’t call, then we have those text that definitely comes in clutch to send an update out) I always try to call instead- I feel like updates land better over call. And when I can’t call but can spare a min…. I custom the message( we have that option too) instead of sending the pre-populate “ the patient is doing well” “ surgery has started” . I’m glad you shared your perspective on the text message updates. Makes me feel like I’ve been something good for my patients. Because I’ve always felt them to be distance.
Ps. Going on bypass is a high stress step for cardiac procedures….so totally get the use of the prefilled text. Sometimes we get soooo busy we don’t get to update.
I learned a long time ago that you can be really happy and really sad at the same time. It sounds like you are grieving the loss of the life you thought you were going to have with your baby but also immensely grateful and happy that you still have a future that includes him in it. Sprinkle some anxiety on top and you’ve got a rollercoaster of emotions. Take care of yourself my friend ❤ healing is hard
PLEASE give yourself some grace. You gave birth only 5 months ago and have been dealing with all of the VSD. My son, now 41 years old was also born with VSD. He did not ever need surgery, his closed on its own when he was in his 20s. I remember so vividly when the pediatrician came into the hospital room as I was preparing to be discharged and started talking about a murmur most likely VSD - a hole in his heart! I became so distressed, that my OB arranged for me to stay with my baby. And they were talking about EKG (I didn’t know what that was) and that brought me to sobs. You’re shifting from joyful gratitude and the realization of the gravity of the situation. I think you are an absolute warrior queen. Sending all the positive energy to you. You’ve (and Oliver). Have got this!! ❤
I'll never forget something that the surgeon who did my dad's kidney transplant said-- you may not have been cut open yourself, but the family goes through a different type of trauma, especially during long surgeries or serious hospital stays. Take the moments for a break or a walk or a coffee when you need them. Don't let them pile up until you're under so much weight that you can't breathe. It's okay to need those moments, to take that deep breath and think about something else for a second or two. So glad the surgery went well!!
Thank you so much for sharing! Our son was in a motorcycle accident on December and had brain surgery. He is a walking miracle and when you said , you just got used to him being sick and now he’s better and you weren’t sure what to do with that. I have been in my own head and depressed and couldn’t figure out why and you saying that flipped a switch for me. Thank you so much for sharing!! And God bless you all and complete helping for baby Oliver!
Praying for you and yours ❤
I can’t reach through the screen to give you a hug, and no emoji is good enough.
So much of your story took me back to my son’s first heart surgery. (He’s had 2/3, and the first was the longest and riskiest.) I kind of can’t imagine getting updates every hour. I guess some people probably find that helpful? I don’t know if I would have wanted them. They weren’t offered to us, and we didn’t ask.
My husband was with our older two when I went to get coffee after our son was taken to the OR. I didn’t have your husband’s experience of breaking down talking about the surgery because I wouldn’t let myself say it out loud. Part of me wanted to, but I knew that breaking down is exactly what would happen and I didn’t have anyone I knew right there, so it just wasn’t going to happen.
It was undoubtedly the longest, most stressful six hours of our lives.
He’s so good now, and it was so stressful and uncertain then, and both of those things are true. Don’t beat yourself up too much about the conflicting emotions. They’re so, so normal.
Wishing all the best for your family and especially for Oliver ❤
Thank God. I'm so proud of you for processing this, even publicly. We are here with and for you. Oliver has many, many internet aunties. Love your little family 💓
I'm in tears. And I get it. 100%. My husband had OPS (quad) at 65 and all the feels w/Oliver are the same. "Survivor's guilt"....omgosh I didn't have those words. I needed those words. 😭😭😭😭 Personally, I don't think a f/u video is needed. This was perfect. It was enough. It was everything!!! Stay blessed ❤🙏🙏🙏
It's been 30 years since my daughter had open heart surgery to repair a large Vsd, your description of events is right on target. It's hard to be a mom, but your are rocking it!😊😊❤❤
Bless y’alls bones! How is your daughter now??
Her heart is 100 percent!
Thank you - No one ever felt me more safe than the Cardiac surgeon we had for our son's VSD repair. When he did the pre-op appointment it was calm and peaceful. Also, I brought a puzzle and went into a bubble and didn't emote which enraged my husband for not caring about our baby in surgery. I barely finished the boarder of the 1000 piece puzzle before they called me over. You are right...there is nothing you can do to alter the goings on in the room so why stress yourself to the point of tears or panic.
Thank you so much for the update. I am sending your family all the best wishes! I just wish I could give you a hug. You are a wonderful mother.
First of all, I'm so happy to hear he is out of the woods and doing well.
As a pediatric home care nurse, I recommend looking into home Care nursing if you have not already. It can be really overwhelming and you have another child to think about as well. Having somebody there to keep the medical aspect on schedule, somebody to sit awake in the room at night to make sure he is okay and monitor his vitals, ECT can relieve a lot of stress and pressure. Also just remember it is your home and your child so if you get assigned a nurse that you're not comfortable with you can just call the agency and say no thank you and they'll try to send you another one. You guys are going to do great and he is so lucky to have you.
Good idea! Commenting so algorithm bumps it to the top!
Thank you for your openess and vulnerability and for making the important things in your family that should be private, private. I respect the heck out of you and always love your updates.
I am an open-heart surgery baby and it was hard for me to watch this video. I can't even imagine how you are feeling. I think that you are still sad because you are processing everything but also because it is extremely hard to see your little baby on a hospital bed with wires and plug and medical tape all over. When i look at my baby hospital pictures i am so sad for my mom who stayed by me the whole time. You are not alone and everything you are feeling is normal and okay. ❤️ I am sending so many healing vibes ❤️
I think you explained it perfectly. You didn’t even get a chance to adjust to bad news before there was good news before there was bad news before there was good news. I’m sorry for the whole situation but glad it turned out as well as it did. May he continue to recover well. Modern medicine is truly a miracle.
Praise God for the wonderful doctors and nurses who treated him and for a successful surgery!
Praying for your family in recovery! ❤️🙏🏼
Thank you so much for sharing. Crying happy tears for you guys. I was a preemie, it’s illuminating thinking of how my mom dealt with my 3 mo in the NICU. You’ve helped me to appreciate her even more!
Thank you for sharing. I appreciate you being so transparent. I'm lifting up your family in prayer.
I identify with every moment of your video- I experienced it all 20 years ago with my own son. You will be forever grateful and forever worried- you just learn to put those worries away in the back of your brain so you can function. Life is good and he will will thrive (and so will you!).
Love how honest and raw you are. Thank you for being who you are and talking about the hard things so others can resonate and not feel alone either! You are amazing!
I was born with a disability & 38 years later I still think surgeons give the best hugs
Finally watched this after avoiding this video. My daughter had open heart surgery at 2 weeks old for VSD, ASD, and aortic coarctation and I am terrified of reliving that experience. But I am so glad I watched. "Every hour was the best and worst hour of my life" is so exactly how it felt. Thank you for sharing your experience. It helps hearing the complicated, and often disagreeing, emotions from someone else who has lived it. My daughter is now a very healthy 2.5 year old! I'm so glad Oliver is doing well!!
Our daughter’s surgeon gave us the rundown…..all went well, blah blah blah. Then, as an afterthought he said, Oh, we didn’t need any of the blood” (my mom & a family friend had direct donated) and I BURST into tears. Not needing blood is what broke the dam for me. Surgeon just looked at me like I was cuckoo. (I mean I am, but that’s just chronic) Thirty years later, she still has not had a blood transfusion.
His heart has been through A Thing. The waiting is the worst. You’re now in the six weeks of healing wait. You’ll be in the let his little heart become a bigger heart wait. It needs to adjust and that requires patience. And when your kid is sick, you have little patience for the time to recover to pass.
Give yourself grace.
Thank you for being so honest .. it will help others who share those same feelings … Fear that our children will be ok … guilt that our children are ok when others have a different journey… Joy when we get to celebrate the wins !!! Celebrate the wins … it’s ok !!!❤❤❤❤
I spent many many years in and out of the hospital as a child for surgery to get rid of / shrink the same thing. I ended up having 10 surgeries between the ages of 5 days old and 15 years old. One of my fondest memories..... one of the things I remember the most was how my mom and dad were there for me every single time without fail. My mom went with me to all of my appointments and scans and my dad was always there with me when I woke up from surgery. They are cherished memories and I am so grateful that both of my parents took care of me and supported me the best they could. Your son will remember that. He will remember how you and Jonas were there for him and took care of him, and as he grows up, he'll be so so grateful. It's really hard to be a mom now with a child myself who suffers from a medical diagnosis but with my history of being in their shoes, I have been able to take care of my child and love them through it. You guys are awesome!!
Hi! Watching this video brought back many feels. My husband has needed two large surgeries for cancer, and I can tell you that your feelings are absolutely normal - not that that makes it any easier. Take it one step at a time - the good feelings will come back, I promise.
We love you, beautiful mama! Praying for continued healing in ALL areas sweet babe! You are amazing ❤❤❤❤
I can so relate to your experience. My husband had his second open heart surgery on 2/3/2022. He had his aortic heart valve replaced. He’d had his first surgery on 9/21/1991 and they were able to repair an aneurysm on his aortic heart valve. We found out, at age 25, he’d had this aneurysm that occurred due to endocarditis that happened after a strep infection that got into his blood system. We also discovered he’d had a birth defect in his aortic valve since birth. He was born with a bicuspid valve instead of a tricuspid valve. His repaired valve did great until almost exactly 30 years to the day of his first surgery. He had minor leakage around the aortic valve and had to take blood pressure meds daily but basically was the picture of health for 30 years. He annually had checkups with his cardiologist with appropriate testing as needed and everything was great until his checkup on 9/23/2021. During his echocardiogram they discovered from one year to the next he went from a healthy valve to critical aortic stenosis! He made it through his second surgery and we’re thankful we didn’t delay because the surgeon said his valve crumbled into bits when he went to remove it. The funny thing is my husband had absolutely no symptoms of critical aortic stenosis. He even split a cord of firewood, loaded it in his truck, delivered, unloaded and stacked it two days before his second open heart surgery with this critical aortic stenosis!!! He did have AFib after his surgery and had to have cardioversion (shocked his heart) to put his heart back into the correct rhythm. He was on medication for 6 months and now he’s off the medication for the AFib and only takes two different BP meds and is on Coumadin now for the rest of his life.
I know Oliver will get through this and grow into a happy healthy little boy. He will learn how to keep his heart healthy and that he must see his cardiologist for the rest of his life to keep it healthy. Small price to pay to fix his little heart if I’d say so.
Hug Oliver tight and listen to his heart beating strongly now. 💗💗
You are brave and beautiful. There isn’t ever gonna be a ‘back’ to normal just a continuation of life and the whole ride just moves forward. The best news is that you are already showing amazing skill at the twists and turns. Things will level out and the whole community you’ve been blessed with is cheering all three of you on!
You make sense Elyse. You've described emotions perfectly. They swirl in a kaleidoscope of craziness all at the same time. So grateful to hear Oliver is recovering from surgery and that you are home. He is connected to a spiritual oneness and unseen support system that is not connected to the human tragedy of all you've been through.
Yes, his little body is healing, and his soul is always safe.
It's challenging to connect with our inner wise old soul that is the peaceful part of you when there are so many scenes, emotions, people and stories to process.
Trust your inner knowing. Allow yourself moments to connect with that part of you and the noise of everything else will subside more quickly.
Sleeping is healing. Napping is good. 30 seconds of meditation is gold. Let people be there for you and ask for more hugs and holding to calm your nervous system. ❤❤❤ We see all is well.
My oldest son, also named Oliver, was born with an autoimmune blood disorder that causes him to have extremely low white blood cell counts specifically neutropenia and anemia. This in turn led to many, many, very scary infections and hospital stays in his early years. I felt like I was always on guard and that even when he seemed to be doing so much better I couldn't let me guard down. He is now 13 and still has to deal with complications from his blood disorder but is doing really well! I don't think you ever lose that "something bad could happen" feeling, especially as a mom. It has forever shaped me as a mom. I completely related to that " everything is going to be ok, but doesn't feel ok" feeling. As their mom we feel so responsible and like we need to be ready and aware at all times. it WILL be ok and you DO have this but its totally OK to feel all over the place and unsettled. It does take time, and lots of patience and grace for yourself as you settle into this new normal. We're praying for your entire family and I love seeing all the updates! Hang in there and if you ever need to chat or vent feel free to message me!
I had open heart surgery 6 weeks ago. Diagnosed with Hypertrophic Obstructive Cardiomyopathy in Oct of 23, on halloween. I had massive hypertrophy in my left ventricle, causing mitral valve regurg, pulmonary edema, pulmonary hypertension, heart failure, a LONG list of issues. I was at huge risk for sudden cardiac arrest. I am a 39 year old mom of 4, ranging in age from 6 to 16. There's nothing like teaching your kids to do CPR on their mother.
So much of what you experienced, I experienced from a different perspective. Recovering has been the worst and best days of my life. Being in the ICU for a week, having to have a pacemaker put in, having 30 tunes coming out of my body, the pain.....it was awful. But, I get to live. It saved my life.
Things escalated quickly once I saw a specialist after my diagnosis and he realized how bad it was. I went from normal to your heart could stop at any time. It was like a whirlwind. To go from good to bad so quickly it felt impossible to wrap my head around. After surgery, my amazing, very experienced surgeon told me I had the worst hypertrophy he'd ever seen. He caused a VSD because my obstruction was so severe. He had to call in a second surgeon. He said my surgery was a nightmare and I would not have survived if I had been older.
Trying to be grateful through the hard days was tough. Trying to keep up with the whiplash of change was exhausting. I cannot imagine feeling those feelings for a tiny human. Prayers for your family.
What an INCREDIBLE story. I know while you’re in it… it’s a full on tornado where you’re in the center watching n feeling EVERYTHING all at once… but you now have a truly INSPIRING story to encourage others who can’t articulate what they are feeling. Being able to articulate n process the way YOU do is half the battle in the process! Thank you for being able to speak and clarify each moment when the rest of us can not! That in and of itself is crazy powerful. And lil mister Oliver has such grit and full on MOXY to his story. He will forever be a superhero! In his lil brain… he ONLY knows how to OVERCOME🙌🏼no fears, he didn’t question he just kept his lil perfect attitude (inherited by you n Jonah) to just be in the moment as you were on the other end! As a mom of four, who are all in their twenties, each child is SO very different!!!! Each one has their OWN set of obstacles… n your heart gets kneaded until you just become numb… but here’s what I’ve learned… EVERY storm runs OUT of rain… n for me n my faith… just knowing God loves our babies even MORE than we do n he has a gigantic plan so far greater than we can wrap our lil brains around, and it can ONLY be good… because if it’s not good then he’s not done with it yet! And all the prayers you’ve received and have on such a huge scale… should be a blanket of peace over you.
So glad he’s well, so PROUD of you n your husband and so grateful for such an inspiring story being told🙌🏼
YOU GOT THIS!!!!!!
I'm snuggling my miracle 7-week-old baby boy watching this and just bawling. I can't even imagine what you and Jonas have gone and are still going through. I had a traumatic birth but it's only traumatic for my husband because I and baby boy don't remember it and I feel so bad that he had to go through it alone and is the only one with those memories. 😫 So so glad Oliver is on the mend and you've got each other and I hope August is handling it well too, as confusing as it is for a toddler. ❤❤
that is such a huge thing for your family to go though, so glad he’s ok! like others have said, kids are super resilient, we’ve evolved to still develop after birth, oliver just had an extra side quest!
i’ve met and heard of a lot of people with this condition, including my cousin. she lives a normal life as an adult aside from the discovery of the hole and surgery, along with maybe taking it a little bit easier than the other kids when she was growing up!!
You’re doing great. All of your emotions are totally normal. You and your husband were meant to be his parents because your two are amazing
you have explained everything beautifully already. I'm so grateful also for Oliver's amazing surgery and care. He's a lucky baby to have such wonderful parents who are able to provide him with what he needs. I can imagine it's been unbelievably scary and that would account for so many ups and downs once the 'problem' is fixed. Sending you and your family a huge hug, from a Mom and Grandmother in Canada
Recently I have been having so many dreams with Elyse in them and I am not a person who usually wakes up and remembers my dreams. But when I wake up and I remember she was in my dream every time and I get this huge feeling of warmth and like she is giving me a hug filled with compassion, I don’t know how else to describe it. So you have been deep in my thoughts Elyse and I wanted to say thank you for making myself and others feel like we aren’t alone.
I had a preemie 22 years ago and I related to everything you said. Look how strong we are as loving parents. All these feelings are valid.
Verbal processing is SO beneficial 🫂 The duality of feelings and emotions FEELS weird and yet is so normal.
Continued prayers for your sweet family.
My son had brain surgery six years ago at 20 years old. He’s fine now and stable. I still have moments of feeling and understanding everything we went through. You will too. Please dont forget you’re still stabilizing your pregnancy hormones and caring for yourself and your toddler. Your beautiful complex brain is driving you thru what needs to get done safely. Your beautiful heart will help you navigate the emotions as you can handle it❤