Oliver's VSD surgery update: we're home! ❤️🩹
If you’re new, below are two updates I made regarding Oliver’s heart if you want additional information:
Oliver’s Diagnosis: • 1 in 100: Oliver's VSD...
3 Months Post-Surgery: • Oliver Update: 2 steps...
Our son, Oliver, had open heart surgery to repair a few large holes that we discovered in his heart a month ago. He's a week post-surgery and I wanted to finally pop on here and give you guys an update on how we're doing as a family.
Thank you for all of your kindness and support through this season of our life. We couldn't have ever imagined ourselves in this situation, but we're grateful we have such a loving community of people all around the world that are loving us and holding us up through this strange season!
There have been a lot of you that have asked how you can support me and my family beyond watcing and engaging with my content! Because of your requests, I created youtube memberships for those of you that want to support additionally! These are simply a way for you to support the content I already create. Love you guys! The link to those tiers are below! ♥️
m.youtube.com/...
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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.
@lilyvalelearning4246
5 ай бұрын
soo perfectly captured!!
@SeekerKC
5 ай бұрын
_Very_ well said.
@amyh2888
5 ай бұрын
That's a great perspective.
@emmap.7314
5 ай бұрын
Thank you for sharing that beautiful perspective!❤
@abbeyball6890
5 ай бұрын
❤ 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
@carolwentworth3709
5 ай бұрын
Fear can really mess with your head. Hope he heals quickly. You are a great mom. He is lucky to have you!!
@plantyfan
5 ай бұрын
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.
@courtney2590
Ай бұрын
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
@Skibbityboo0580
3 ай бұрын
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!
@serenity34now
Ай бұрын
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!!
@learningtomakelimeadeoutof9318
5 ай бұрын
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 ♥️
@lisam8105
5 ай бұрын
❤❤❤❤❤❤❤
@micheleseenarine980
5 ай бұрын
Thank you for all you do! ❤
@PrairieDawnC
5 ай бұрын
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.
@AngelaSmith_1970
5 ай бұрын
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. ♥♥♥
@tepiddairy
5 ай бұрын
❤❤
@yazbee8736
5 ай бұрын
I love your art! Specially of women. ❤ glad you know and love Elyse too! 😊❤
@tansy2279
5 ай бұрын
Scott?? Wasn't expecting to see you here, but i love seeing your empathy
@jennywiswell
5 ай бұрын
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!❤
@doloresbullock3398
4 ай бұрын
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.
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.
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!
From a pediatric cvicu nurse, you are doing amazing. Thank you for sharing when you didn’t have to and spreading awareness to CHD.
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.
@sumgirl720
5 ай бұрын
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!
@marshalangelaar7260
5 ай бұрын
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.
@jennifertaylor40
5 ай бұрын
I'm so glad Oliver is doing well.
@mcarter4421
5 ай бұрын
This is so well said ❤
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!
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.
@hopeadler507
5 ай бұрын
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.🫂💜💜💜💜💜💜
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 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.
@elyse_myers
3 ай бұрын
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.
“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.
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.
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
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!
It’s not a surprise to those of us who have been watching you for years, but you are a great mom. ❤
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!!
@maddiedoesntkno
5 ай бұрын
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.
@anio1349
5 ай бұрын
@@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).
@Bernergirl2008
5 ай бұрын
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 ❤
@lizhyink5636
5 ай бұрын
@@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.
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 ❤
These sweet people make hospital trials so much , not easy, but are a comfort.
@TheNoiseySpectator
5 ай бұрын
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.
@high62609
5 ай бұрын
@@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.
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.
@megs.9915
5 ай бұрын
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
@erikabastarache7647
5 ай бұрын
I've never gone through anything like this and also cried about the surgeon hug🥹❤️ powerful moment
@tammymom24bugs
5 ай бұрын
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
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!
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. 💐
"The healing is hard." Pretty much sums it up. So glad to hear that he's doing well. Many hugs!
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.
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❤
@Just-wiggling-thru-life
5 ай бұрын
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.
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 ❤
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!
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.
My anxiety and PTSD are giving you a hug. This is a blessing and I pray for healing for ALL of you.
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!!!!!
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.
“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. ❤️
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. ❤
No, THIS was beautiful and so real and so appreciated. Thank you for sharing and validating the “ands” of life - scary AND beautiful.
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! ❤
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 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.
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.
AN EMOTIONAL SUPPORT COFFEE!! That is totally what my coffee everyday is for!
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!
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
@Bernergirl2008
5 ай бұрын
Another cardiac mama here to say ❤❤❤
"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!
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.
I am so glad the surgery went well. Heal up little Oliver 💕
I think you became a viral vlogger so Oliver would get like, a million prayers up to heaven ❤ SO GLAD he is OK ❤
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!!
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.
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'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 ❤🙏🙏🙏
He was so proud of you, the doctor! He knew he needed to be there in that moment
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!!
Oh Elyse. I feel this so deeply. My son is 4ish months out from open heart surgery. We found out prenatally, so were "prepared", except how can you ever be prepared to hand the child you grew over to a surgical team to sit in a hospital cafeteria to get texts like "baby is off to sleep!" "Baby is on bypass!" I constantly CONSTANTLY feel like I should be back to normal mentally and emotionally. He came home, he is "healthy" , his cardiologist keeps telling us she has never seen a baby like this recover so well... So why do i still feel so sad. You are not in the trenches alone.
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.
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.
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❤
Nearly 10 years ago I ended up in the hospital with severe high blood pressure (300/190). Was in there for 2 days and with meds, diet and exercise I am fine, but for a good while after I was in shock and felt like my body betrayed me, plus a bit anxiety around any kind of doctor visit for a while after. I can’t even imagine what it must like for a parent to see their child, their 5m old, through such a thing, but I know that the shock and emotional fallout are very real things. All this to say, give yourself time and space to feel all the things, you’ve been through a lot! Glad Oliver is doing so well, and sending you all hugs.
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 ❤️
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!
It's a common experience for people going through a crisis like this to be focused by necessity on navigating the crisis without the time to process along the way, only to have the "processing hangover" hit after the crisis has passed. Thank you for so eloquently sharing your experience, as I am certain others will find it helpful as they deal with their own life hurdles, and feeling less alone for it.
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.
This is the most accurate description of what it’s like being a parent with a child in the hospital. I had complications with my daughters birth and she was in a coma in the NICU for 3 days followed by 5 days in NICU just being monitored for seizures. It is an indescribable experience and every bit of good news feels like it’s over shadowed by the darkness of what might go wrong.
My husband had heart surgery at 3 for a hole in his heart and it went perfect . He's never had any issues after the surgery and he just turned 38. You got this momma! ❤
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.
Mama, it’s PTSD. Very normal to be feeling the way that you do. It will take a long time for your brain to heal from this. Be patient with yourself. ❤️
Momma of twin 29 weekers, and nothing prepares you for seeing your baby hooked up to all the things. We spent almost 3 months in NICU. They are 6 now and man … it feels like a lifetime ago. But I got some advice from our nurse who was also a NICU momma. She said your feelings are real and valid but this will not be your forever. On nights when my anxiety was at its worst, I replayed that conversation over and over in my head. It really got me through some rough spots. I’m hoping for all the good and healing things for your little one and the rest of you as well. Thank you for sharing
The need to sleep is a side effect of shock. My kids both have VSD but fortunately they didn't need correction. Glad all went well for Oliver. This is a huge moment in life. All the feelings are valid.
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. ❤❤
You have done such a great job, momma!! You got a big diagnosis and came to terms with that, and are in fight mode, and then they fixed it, and you are still in fight mode, waiting for the shoe to drop. You have every right to still be confused and process. We miss you on tiktok, but I know now why you aren't. Focus on that baby, breathe, and enjoy being a momma!! As nurses, we forget that this pt is our 4th or 8th that week like that, but this is your only one. Thanks for the reminder!!
I completely understand the internal conflict going on. My daughter was in NICU for 6 weeks. Most of it was spent battling a gangrene infection. It actually took most of the next year for me to recover emotionally. Go easy on yourself. Go easy on your hubs. You will recover as he does. My daughter is now another one of your fans and pregnant with her second! Thank you for sharing. Don’t ever feel like you say or share too much. It is exactly enough. ❤
The part where Jonas couldnt finish his sentence...tears welling up! Our youngest had MRSA deep under her muscle tissue & at that time they really didnt have much to fight it. The surgeon told us theres a 50)50 chance that she'd be ok ...that feeling of uncertainty & helplessness. Im so happy your angel is ok & recovering. It's too emotional to bare at times.
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
My son had open heart surgery last year for a large VSD and another defect at 3mos. You describe the emotions perfectly. Especially the merry go round that happens in your head of “he’s better, but I’m so sad and terrified. But he’s healing?” It’s such a mind game. I’m glad your son is doing better! Mine is too.
Sobbing as all of the memories of my daughter’s post op come flooding back. It’s so wild because it’s the biggest thing to happen to you and your husband…but it’s totally normal for the doctors and nurses…and sweet baby Oliver has literally no idea what he just went through. It’s so surreal! Our OH hospital stay was the shortest stay we had with our daughter…it doesn’t make any sense, how that could even be possible, but at the same time it’s such a miracle. These kids are so resilient, he will thrive more than ever, the scar will fade, the medicine will end and all will be well. You have so many heart parents who know exactly how you’re feeling and were rooting for you all. Praying over sweet Oliver and that he will be fully healed❤️🩹
My one week old son was intubated and on life support with RSV. He almost died multiple times in front of me. Watching this video was so relatable in so many ways. Praying for you guys❤️
Oh mama, you need to know, no.. you MUST know that you are an amazing mom & you both created a beautiful baby boy. There is absolutely nothing you should feel this guilt about & I know you know this, but maybe a stranger from the internet reminding you of this will help with working through those massive and very real and very human feelings. So proud of you both, and extremely giddy that Oliver is smashing recovery. On to many more memories and beautiful days for you hun ❤ hugs!
my son had his colon removed and then went thru an entire liver transplant. it was highly traumatizing for me to know that i nearly lost him. its a LOT of emotions to process and it took me abt a yr to truly work thru it all after he was healthy again. give yourself the time and grace to feel everything. don't be mad with yourself for the tornado of thoughts. for me, my mantra was just to see them, feel them, thank them for helping me process, and that storm did calm down. you're a light for the world, its ok to save that energy for yourself sometimes.❤ tysm for sharing this story. you are so loved ❤
I was born with a disability & 38 years later I still think surgeons give the best hugs
My boy is 19 now, but there's never going to be a day that equals that day of passing my 10 day-old baby to the anaesthesiologist and wondering if I would see him alive again. I think it took about 2 years for me to stop wobdering when he would break... When I would break him, honestly. That impossibly tiny scar has grown with him. I will never get over the amazement that I felt looking at that scar... How did that adult put anything of consequence through such a tiny opening in this timy human?? I still don't really understand that, but he did more than something. He did everything! My baby is 6'3" now, and his scar has grown proportionately... a growing mark of undeniable mercy and grace. I'm praying for you guys, as a family, to celebrate that mercy and grace as well. I recognize that prayers may not be welcomed, but it's what I have to offer. I'm sorry for your pain and for the fatigue and fear that will lace these days, and I'm praying for providential strength, wisdom, and discernment as you care for both yourselves and your children. Praying for Truth and Light always
I understand how you're feeling 100%. After I had 2 miscarriages, my successful pregnancies didn't feel good until I could feel the baby moving. And even then, if it went for more than 12 hrs of not feeling kicks I'd get a little unsure. Every ultrasound appointment, every ache in my muscles, every quiet moment was accompanied by a quiet voice saying "It's gone wrong. Again." It took a long time for me to realize it was just a different version of my anxiety. It wasn't the worrying, what-if anxiety. It was the "don't you dare relax, because that's what you did last time and that's when it all went to hell." I think because everything started so suddenly and out of left field for you, your anxiety is now not letting you relax because then you will be ready for the next shoe to drop. At least that's what happened with me. I HIGHLY recommend going to therapy and working through these feelings. I can't promise that things will always be fine or that life will be easier in the future but I can say with 100% certainty that hyper-vigilance will not change anything. You can't be ready for everything, it's impossible. It's also human. Our anxiety lies to us and robs us of the joy we could be experiencing now. I wish you and your boys all the best things in the world. So happy to hear that Oliver is well. :) Big Hugs!
love you Elyse! THANK YOU FOR NOT GIVING INTO THE PRESSURE OF THOSE A-HOLES ON TIKTOP TRYING TO FORCE YOU TO TALK ABOUT SOMETHING YOU DIDNT WANNA TALK ABOUT!!!!!!!! congratulations baby Oliver....
I totally get your feelings. At the age of 10 my son had a stroke from a bleed (AVM) in his brain. You will ride the rollercoaster of emotions for a while. In retrospect I labeled/compared my emotions to PTSD. It's all very hard and yet you want to achieve peace by being grateful, but it is just not that simple. I am so happy for the outcome of Oliver's surgery. Give yourself grace and live hour by hour.❤
I am glad to hear Oliver’s health has taken positive steps in the right direction. I can’t help but gently point out that No matter how many times you said I’m good, you don’t sound “good.” And that’s okay. I just want to validate that it’s okay to feel bad when things are going relatively “good” in a pretty severe health emergency for your baby. Your reactions and emotions are NORMAL for the situation you and your family are going through. You are a beautiful mom- be proud, loving and patient with yourself in this time.
It’s like, someone saves your life and your grateful, AND you are sad you even needed saved AND a TRAUMA happened that required the saving. Grateful AND SAD are co-occurring states of being.
I just want you to know as a PHighter, I was diagnosed 16ish years ago. It is VERY VERY scary at first, so your feelings are completely valid. I'm so incredibly happy for his surgery and how fast he is recovering. There are plenty of groups for families of PHighters all over. Its not a huge community because its still pretty rare, but we are out there
I feel this so much. My son had surgery at 4 weeks old and he needs another in 2 weeks. You push your feelings aside to take care of them. You don't have the time or ability to process what you just went through cause you're surviving. My son's first hospital stay was the hardest thing I've ever done in my life, for so many reasons. And we were at an amazing hospital and everyone was so great. It's an indescribable experience for people that have not gone through it. It's just incredible what we can overcome for our children. I'm so happy he's doing well. I hope his recovery keeps going smooth. Sending you love from a mom who shares a similar experience.
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.
As the mother of a child that had life saving brain surgery...all of the emotional flip flopping is "normal". Medical situations are so unpredictable and happen so fast there isn't proper time to process the emotions of each moment so at the end of it you've got a whole bag of emotions to experience & sort through. The reality is down the road there will be triggers of some of them at the most unexpected times...but the comfort comes in remembering where they stem from and knowing everything turned out well. You're an amazing human and a warrior mom - Jonas gets credit as a warrior dad. These moments are hard. They are where we are most vulnerable and least in control. They test and ultimately strengthen us in ways we didn't know we could be. You've now been blessed twice with the gift of Oliver's life. ❤️ Thank goodness for modern medicine!! I realize I'm not saying anything you don't know, I just want you to know that you and Jonas are seen. You're not alone & your bag of emotions are "normal" in these circumstances. Big huggs from one warrior mom to another.
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!!
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. 💗💗
I am a mom and one of my babies was like yours: profoundly unlucky and then profoundly lucky. It is so much. Thanks for voicing that middle place ❤
When my son was 3 weeks old, one evening he stopped breathing. They say that apnea is natural for the babies that small. I was holding him in my arms at the moment and, thankfully, quickly reacted and started chest compressions while my husband was calling the emergency. He was breathing again in less than a minute and did not have long-lasting complications. He had some neurological problems that we dealt with by the time he started school. But it took me years to get back to normal after that episode. I was scared for the kid 24/7, I could not get attached to him in a healthy way, because I was sure his life was in danger. It greatly affected our relationship. Unfortunately, I could not afford therapy until many years after. Please take care of yourself and ask for professional help if you feel that's what you need. And, of course, I wish baby Oliver a quick recovery. You're the best ❤