Oliver Update: 2 steps forward, 1 step back ❤️‍🩹

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If you’re new, below are the first two updates I made regarding Oliver’s heart if you want additional information:
1. Oliver’s Diagnosis: • 1 in 100: Oliver's VSD...
2. Post-Surgery Update: • Oliver's VSD surgery u...
I had originally started the day by filming a weekly vlog like I usually do on Mondays. It wasn’t my plan to bring you along for Oliver’s cardiology appointments, but a big part of me was secretly expecting for everything to go according to plan. The day took a turn after the appointments, so I figured I would update you on where we’re all at with his VSD recovery.
This isn’t exactly the update I wanted to be giving. But with that being said, we’re extremely grateful for any and all steps forward - regardless of how many steps back we have to take in the process.
All together, Oliver is doing better than he was before. We’ll update in a few months when we know more. ❤️‍🩹

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Опубликовано:

21 май 2024

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Комментарии : 2,1 тыс.

@thenakedpainter3731 29 дней назад

I am a mom to a disabled child and a nurse. You DO NOT need permission to pump. You DO NOT need permission to NOT pump. You do not need permission to do anything that takes care of your child but also takes care of you. Always remember you cannot pour from an empty cup. Love your babies. Love yourself. Take care of your babies. But take care of yourself too. This is hard. I get this. And you are seen. We all love you.

@crissys2angels900 29 дней назад

Agree 100%

@MeUrWishGranted 29 дней назад

As a mom of a special needs child and a nurse of medically fragile kids, I 100% agree!

@lulumoon6942 29 дней назад

Great words, thank you, and best to you. 🙏🕊️

@NovasYouTubeName 29 дней назад

Lovely supportive comments ❤❤❤

@rueriddle 29 дней назад

We do all love you and your family ❤❤❤ well said

@snaliens 29 дней назад

Please don’t EVER apologize for crying. You have a village holding you up so cry cry cry!!

@natashabeachy5159 29 дней назад

Came to say this!

@alywren6438 29 дней назад

ENTIRELY agree. @elyse_myers We are all right here with you. Especially us moms/parents. It may be a slight step back... But it sounds like you guys and the doctors are doing a GREAT job keeping an eye on it and doing everything needed to make sure your little one is OK. Just PLEASE PLEASE PLEASE take care of yourself during all of this. If you found a milk bank would you feel better and less stressed? La Leche League should have some good places to contact!!! 🫂💜🫂💜🫂

@wintergirll 29 дней назад

100%

@rearles4951 29 дней назад

It’s entirely human to cry. Let it out. We are here with you.

@MikaylaPandas 29 дней назад

Im so glad she fully came to youtube and left tiktok. Everyone was so cruel to her. RU-vid loves her

@randiaeshliman6015 22 дня назад

Best breast feeding advice I ever received. “nursing your baby is a partnership. It only works if it is working for both of you.”

@jesscharde8674 16 дней назад

This is so good.

@amberaragon9548 3 дня назад

❤

@audreyneal6168 26 дней назад

As a disabled person (someone who had Oliver’s condition and lots more) I really want to stress that recovery isn’t linear. There are ups and downs and it’s not gonna be a straight line of progress, but that doesn’t mean that progress isn’t being made. Two steps forward and one step back is still one step forward and you will keep moving forward, even if it isn’t the progress you’d hope for. I’m so sorry you’re having to go through this. You are trying your best and that IS enough, no matter what that looks like for you and your family. You’re doing great 💜

@rachellesawyer6523 25 дней назад

Thank you so much for what you wrote about two steps forward one step back is still one step forward - it means a lot to me

@JessicaViolaT 25 дней назад

Since i started my mental health recovery i have started saying "a step is a step". Even if its a step back it could be a good thing, cause it might make you realise that it was the wrong path. I have started many wrong paths to get on the right one and each step either direction have made me wiser, you learn with each step. Each step is you trying and its the trying that is the most important.

@CoffeePlease. 24 дня назад

This is a really important message and one I’d like to reflect back to you, in case you also need to hear it. Sending you love and spoons. 🥄🫶🏻

@audreyneal6168 24 дня назад

@@CoffeePlease. aw thank you, much appreciated 💜

@stacibenkoussa4342 24 дня назад

What love you shared ❤❤❤

@imuwmmp 29 дней назад

Hey Elyse. I'm also Elyse :) I work in paediatrics in Australia. You dont need anyone's permission to stop pumping. But sometimes people really feel they need it, so i give it to mums all the time. And I'll give my speech to you to. I give you permission to stop pumping. Every amount of breast milk you have given him is so amazing. To have done it for this long is so fabulous. You've given him months of extra antibodies etc. But a feeding relationship needs to work for everyone. And its ok to be exhausted by pumping. Its ok to stop. And you should stop if you're feeling like you're done. Be proud of yourself for what you've done, and now wind it back, spend less time and energy pumping so you can spend more time caring for yourself and having fun with him. You're doing amazing.

@yarnkelly3606 28 дней назад

Thank you for saying this. I wish desperately that someone had said this to me with my last.

@torijade2246 28 дней назад

Elyse, I know we are all just strangers but I have never heard better advice to a mama than this. You are already the most amazing mother on earth for him! He is in the absolute best hands with you and Jonas as his parents. My second baby was sick and I was told by her doctors to keep BF/pumping until 2 years old. I’m an ICU nurse. I did it but it was so hard, and I was terrified to stop because like you I thought this was something that I was doing that was helping. But guess what? She did just fine when I stopped! He will too. I mean their medical issues will still be there that will take time and patience But your milk has already done its job for him. Do what you feel comfortable doing, he will be ok. From a mama who had a very sick child to another I want to hug you and tell you to cry and scream and be upset and say it isn’t fair. Then wipe your tears, wash your face take a deep breath and buckle up for the hardest but most glorious ride of your life. My daughter is going to graduate high school next week. She wasn’t even supposed to survive. She is so smart, she is almost 18 and she is going to be a paleontologist. She’s going to college in the UK to study earth science and I know someday she’s going to discover a new dinosaur. Have faith, medicine gets better and better every day. New discoveries are made all the time. Sending you , Oliver and your beautiful family so much love ❤❤❤

@PlatinumMyst 28 дней назад

Typing through my tears. This, this, so much THIS! My daughter is now 20, and this still completely undid me. I really hope you read this, Elyse. ❤❤❤

@brandikaufmann2644 28 дней назад

Yes! ❤❤❤

@imuwmmp 28 дней назад

@@yarnkelly3606 I'm sorry no one said it to you. Its something I feel SO passionate about. I am 100% pro breast/chestfeeding and pumping. But we also need to remember that baby feeding is a relationship. Between the baby and the person/people who feed it. Obviously babe needs to be fed. But it has to work as best it can for everyone involved. Sometimes mum needs to stop BF/pumping for herself. Sometimes babe needs mum to stop because they cant get their latch right or they have too many allergies. The relationship matters more than the method. And maternal sanity/happiness is a huge part of the relationship. I think we can get too hung up on what the "best thing is". The best thing changes for every baby-parent unit through different stages of life. Whatever you did your your baby, I'm glad you did it, what a rockstar you are. But I am so sorry it was hard for you.

@joys2363 29 дней назад

Dear Elyse, remember... 2 steps forward, 1 step backward IS STILL 1 STEP FORWARD! And yes, of course you want to take the next step forward! We all understand that... but please, beautiful soul... Oliver has 2 perfectly loving parents... keep the faith and hope ❤ And there is nothing wrong with crying. If you hold it in, it will eat you from the inside out. Much love 💖, light ✨️, and blessings 🙌 from the Netherlands 🇳🇱

@airhutt 29 дней назад

Yes! Still one step forward I love that.

@binarycupcakes 29 дней назад

This! ❤

@bodyofhope 29 дней назад

YES!!! You're still standing.

@ellenkunkel8845 24 дня назад

Remember: Oliver worries about none of this. Look at his joy. You got this Mama.

@Thepiebaldchart 19 дней назад

This Elyse. Lean into his joy. And do whatever it is you have to do, to feel it and share in it with him. 🤍

@ninamikus4382 24 дня назад

Honey, there’s a reason why airlines say “please put your own face mask on before assisting others.” The best thing you can do for Oliver right now is making sure his momma is good to fight another day. If that means stopping pumping and giving you some more breathing room, you absolutely can, without a doubt and no shame whatsoever. Sending good thoughts your way. ❤

@tarajh 20 дней назад

🎯 🎯 🎯

@DinoReader 29 дней назад

What's best for HIM is a mom that is as okay as she can be. If stopping pumping helps that, that's okay! You don't need permission to stop pumping. He will thrive with or without the milk. Your oxygen mask first. You are loved. Oliver is loved. Thank you for sharing with us.

@idk6144 28 дней назад

I love this. “Your oxygen mask first”. Simple but a powerful reminder

@KD214_ 24 дня назад

Yes, agreed 👏🏻

@tarajh 20 дней назад

🎯 🎯 🎯

@Katalina_K 29 дней назад

Medical ptsd is a thing. For people who are caretakers too. You arent alone with feeling horrific going to a hospital

@deltamimosabridges2916 26 дней назад

Amen.

@cheryldueck318 26 дней назад

100% when I was heading to my first 3 month check up after my primary chemo treatments ended, I had a voice yelling in my head “Turn around, don’t go there! Run away!”. I didn’t turn around, and once I got in my appt, my BP was through the roof. It’s gotten better since then, but 6 years out there is still some trauma when I have to go in.

@olivia_ismyname 24 дня назад

Yep, I have cptsd from being diagnosed with Juvenile Arthritis at 12 & being held down by my parents & given shots 3x a week for years & years & years. I don’t blame my parents, I NEEDED the medication, I would be in wheelchair or possibly dead without it. I feel bad for my parents though, needing to do that. I just know my mom was crying all the time & I knew it was my fault… but I was a scared kid.

@BB-we3sk 24 дня назад

My husband is diagnosed with PTSD from our daughter getting very, very sick at two months old. I have to handle everything revolving them when they get sick, but I’d always do it for him. It is DEFINITELY real! 😢

@RikkiTikki25 23 дня назад

This is 100000% accurate. My daughter needed emergency open heart at 7 weeks old and it took years before I was able to overcome that medical ptsd. Be gentle on yourselves

@harkirankaurkalkat9739 23 дня назад

Pumping is NOT the only thing you're doing for him Elyse. You are loving him, nurturing him, taking him to appointments, giving him medication, supporting his physical, mental and social development. Pumping is a small thing you are doing for him!!! If you are done pumping, then you are done. What you have done is fantastic and he is going to thrive, I promise.

@danielleturner4633 14 дней назад

I’ve missed you so much on TikTok. I can’t imagine what you’re going through. I’ve been a silent observer, and you have done so much to our help our socially anxious community. I will pray for Oli every day ❤

@tortaylor7748 29 дней назад

Crying is just your body’s way of releasing emotion it can’t hold. Never apologize for emotions

@annalisabeth 29 дней назад

Hey Elyse - I received my PH diagnosis when I was 3 years old. I'm a 25 year survivor (now 6 years post heart and lung transplant). Oliver and I are certainly on different journeys, and I don't know the specific aspects of this illness you are dealing with in terms of meds / cause / prognosis etc (PH is a confusing thing with so many variations). All of that said, you remind me so much of my mama who would do anything for me. Know that the greatest gift for us kiddos is simply the love we feel when you are near. My mother's presence is my sanctuary, and your son is so fortunate to receive the same shelter from you. Hang in there. The medical mamas and families are cheering you on.

@lmatrasko 29 дней назад

Heart and lung transplant! How amazing. Sending you so much love, and hopes you you remain healthy and strong. ❤

@BrittKatSlat 29 дней назад

I researched a nice bit about PH and PAH when i had a large Pulmonary Artery found on CT scan. You are a strong woman! And i loved what you said about your mom’s presence being your sanctuary. Do you follow Chloe Temechine?

@tinkeramma 26 дней назад

Thank you for sharing. When I was navigating a very similar world to where Elyse is right now, survivor stories were the literal lifeline that kept me breathing.

@MatrixxPhoenixx 25 дней назад

Love this 🥺

@ceciliamarie13 15 дней назад

I am currently weaning myself from pumping too and having a really hard time doing it. My son has had PH and a number of other medical complications and the ONLY thing that ever was in my control is how much I pump or not pump. You’re such an awesome mom. You got this! Also, rest is productive ❤

@andreacamnugent 26 дней назад

NICU nurse here, the highs are high but the lows are very low. But the constant is always that mom is doing her best, and I know you are! Oliver will not know different than what you are giving him, which is a beautiful and happy childhood. Regardless of any medical diagnosis. You are an amazing mom and you’re doing SO GOOD.

@2529cb 24 дня назад

Former NICU mom here. Stop pumping mama. You are an amazing mom. Only good parents worry about being good parents. Take that pressure off. Hopefully if everyone is sleeping a little better things will be easier to process ❤

@lindahoffman2692 29 дней назад

Ahh Elyse, Those of us with Anxiety disorders TORTURE ourselves with what’s called PRE-WORRY, meaning our Minds make us feel every BIT as awful about things that have NOT YET happened and MAY NEVER happen!! You have MORE than enough that’s actually happening NOW to cope with, and you’re doing BEAUTIFULLY!! And you can Cry with us ANYTIME and as OFTEN as you need to in order to be STRONG for Oliver and your Family!! ❤️❤️🙏😇

@lyric8529 29 дней назад

🩵

@freedomishavingachoice3020 28 дней назад

"Pre worry" AKA "Please for the love of sandwiches someone make a plan that sounds like it might work while not making me evil."

@natalieJe10 28 дней назад

Also the traditional expect the worst so anything you hear will be no where close to what you thought. My top coping skill since I was in middle school, everybody hated it.

@mickycarcar 27 дней назад

Pre-worry is so real. I have a friend who reminds me "you can't predict the future!" When I was going through something like this, a therapist recommended "scheduled worry time". I set aside 30 minutes a day for all my worrying, and any time a worry came up outside that time I put it away to come back to later. I also limited my frantic medical research to this time. It definitely helped to get me through those days.

@Ruth78620 27 дней назад

I wouldn't wish severe anxiety on anyone it's completely debilitating. My therapist told me that 94% of the thing I worry about will never happen and my response was " well what about the 6%?" I'm so sad else didn't get the news she was expecting being a mum is worrying and when you've got anxiety on top of that it's no joke.

@libbypropp4846 29 дней назад

I was a disabled child and I know my mom felt all of this. It’s so normal. But for the record, I never wanted or expected my parents to take my pain away. I knew they desperately wanted to and I also knew they couldn’t. I just wanted them to be there for me. You’re doing that! Oliver is so lucky 💜

@jeanniebylinowski6475 26 дней назад

What is best for him is what allows you to be the most present and healthy, happy Mom. He needs YOU much more than breast milk. I hope you give yourself the grace and love you need.

@laurennash6147 25 дней назад

My son was born with an ASD & PDA that he had closed when he was 3 months old. He also had pulmonary hypertension. I’m happy to say that after 5 years, he was able to stop the oxygen, PH medication, and remove PH from his charts. It took time and along of roller coaster rides. Going into appointments without expectations is key to survival during this period. Right now it’s monitoring and documenting. Allow yourself be feel every emotion that comes so you don’t hold onto it. You’re in survival mode and mourning all at the same time. Emotions aren’t always understandable so just roll with it. Your heart is gold and you can trust yourself and your instincts.

@Kelly_See 29 дней назад

This is identical to my nephews story,and after a wild 1st year of his life-he’s now 6 and healthy as could be! No meds,Plays baseball,does EVERYTHING his friends his age do. Just remember to take care of YOU. He is so incredibly lucky to have you 2 as his parents.

@desertviolet581 27 дней назад

Elyse, my son Jack is almost the same age as Oliver, born in August 2023. He also had his vsd repair at the end of December. He also has mild, persistent hypertension and pulmonary hypertension. I'm also just now weaning from the pump for my mental health. I want to be more present for my son and my husband. Supporting Jack and supporting Oliver is so much more than just breastmilk! I say all this becauseI want you to know you are not alone and I also feel guilty weaning because my son was tube fed. I'm terrified that he will backslide on formula but we are not the only ones who can help our babies. That's why we have our spouses and family and medical team to rely on! You are amazing, you're a great mom, and we will both get through this!

@camille-7015 14 дней назад

You got this momma!! ❤❤❤

@treasurebessler7213 26 дней назад

Pumping if it's making it harder for you to cope, is NOT best for him! I hear the desire to feel like you're in control of something but it also isn't giving you that comfort. It's SO OK to stop🖤🖤

@lbird524 26 дней назад

As someone who’s chronically ill, who doesn’t have a good history of getting good news (or often conclusive news in general), I get the “no hope” thing, I always say “I expect the worst, fight for the best”. I go in expecting the worse possible outcome, prepare and practice, the worst possible outcome, but I’ll still go to the doctors, I’ll try every treatment that might work, I’ll pray (I’m not very religious but it can be comforting) for the best when I can’t control the outcome. This isn’t an abnormal experience, just not a very able bodied one 💜

@M_SC 24 дня назад

❤

@Badgirlgibbs 29 дней назад

Don’t ever feel weak or embarrassed for showing your emotions about your son ❤this video was so real and thank you so much for sharing it.

@saltandpepper986 29 дней назад

❤❤❤ Or emotions about anything.

@North_West1 29 дней назад

He has two strong loving parents to help him through it.

@cindynelson4824 22 дня назад

I had a child who battled bone cancer for 5 years. I admire your and Jonas’ strength and residence. Go watch while he sleeps tonight and know he’s dreaming of him wonderful momma

@Alveiren 10 дней назад

Girl, you do NOT need to feel guilty about ANYTHING. If pumping helps you feel connected to him, continue. If you're stressed out more because of pumping, you don't have to continue. Whatever you decide should be a guilt-free decision. You're an amazing mom.

@sarahleony 29 дней назад

To whom it may concern: FED IS BEST. It’s so hard, I’ve been there. So much pressure to feed our babies breastmilk. Consider this permission to bottle feed or whatever works best for your WHOLE family. Much love! Elyse, I’m so sorry to hear that Oliver’s progress has stalled a bit. Sending you strength 🩵

@Ruth78620 27 дней назад

I get so angry at the militant breastfeeding mob who make women feel.terrible because they don't breastfeed for whatever reason. Its agony, all you do for 3 months is sit in a chair with bleeding nipples crying while ypur baby feeds. This happened to me and my midwife was militant and I ended up slipping into PPD which I've never recovered from.

@curiouslytot1950 22 дня назад

@@Ruth78620 breast-feeding is only really the only option if you have a premie and only up to the date they were supposed to be born. That’s because formula has been noted to cause issues premies. Tons of lawsuits from it… BUT that is why insurance usually covers the cost of getting milk from a breast milk bank up to the due date. So you have options

@sharonzotoff3975 29 дней назад

He's loved. He's happy. He's growing. That's what's important. Give it time...he'll get there.

@nottherealrabbit 29 дней назад

I echo this. With a hug. Just keep hugging him mamas.

@I.m-Me 29 дней назад

Happiness really does help improve your health, just like stress can do the opposite. Just keep showing him love 💖

@hannahharding-duran1693 День назад

My son was also born a VSD. He had open heart surgery at 5 months old at that same hospital. He came out with a complete heart block. He was set up with a permanent pacemaker. That hospital and the staff there helped through so much. They made sure to be completely honest and let me know that I could ask anything and let them know all my worries. I also pumped while he was there. It is hard. But what always helped was just looking at my baby’s face and see that everything would be ok. That he is loved and knows he is loved. ❤

@nathaliaacosta7638 8 дней назад

Hi Elyse! Mom of a kid that was born with a heart condition, this video brought me back to those dates. It was like watching myself 😢. However, a little hope will go a long way. My boy is now 7year old and he is the brightest sunshine. His first year is now a long fuzzy dream. Keep going, you’re a super hero mom and all the hard work will pay off!

@maddiecrosby3899 29 дней назад

Pumping isn't all you are doing. Being his mom, loving him so much, that need for him to be OK, he feels that. He knows. Your physical and emotional support is everything to him. Being his mom and taking amazing care of him is doing a lot for him, even if it's hard to believe right now. All the love and good vibes to you all. ❤

@reillybreen6257 29 дней назад

What’s best for you IS what’s best for him. Put on your oxygen mask first so you can be your best for him. You got this and so does Oliver.

@susanreed9173 26 дней назад

Absolutely agree!

@rubytuesdayism 26 дней назад

My mama heart is next to your mama heart--we cannot take our children's pain but we can walk with them through their journey & care for ourselves with great compassion & honesty.

@revshello 26 дней назад

Mom’s health is part of your baby’s health. Care for yourself.

@Byteme363 29 дней назад

As the parent of a child that had health issues also, I can tell you that your jumble of emotions is normal. Cry when you need to. You can do this ❤

@drewharris7785 28 дней назад

1. You're allowed to cry and be upset; you don't need our forgiveness. 2. You rock. 3. that painting is awesome!

@emiliemoss9386 22 дня назад

My sweet baby girl had her VSD surgery on May 10th at 7 months old. I feel your pain, anxiety, and fear. Bless you, that precious angel, your husband, and your whole family.

@leahmajestic-gaines22 Час назад

Oh, Mama! You are an amazing mama! You need to do what is best for you so you can be there for him. Enjoy your sweet family!

@cynthiajfaulkner8655 28 дней назад

Life doesn’t get much harder than having a sick child. You have every right to feel exhausted, overwhelmed and disappointed the news wasn’t better. We love you out here.

@nurseelle 29 дней назад

I am a mom to 2 special needs boys. I completely understand your situation around pumping. Both are now grown adults and there is no one who can say that X amount of breast milk made the difference in how they turned out. They have some of the same and some different issues and each had different amounts of pumped milk, direct breastfeeding and formula. At the end of the day you have to do what's best for you to be the best mom to your littles. Making milk is not always the priority. I'm also an RN and a Certified Lactation Consultant IBCLC if you need an "official" recommendation to quit pumping you 💯 don't need it, but you have it from me. 🤗🤗 Hugs Momma ❤

@katlangdon 29 дней назад

I was in a similar but different situation where my daughter was born with a rare disease, and I felt I had to breastfeed but in my case I had no supply. I fought it so, so hard even though we were supplementing from birth. I will never forget her dietician shaking me, literally shaking my leg, and saying “I think you need someone like me to tell you to stop. Stop. I’m telling you to stop.” I desperately needed that 💕

@tylergardner7667 День назад

A mother’s love and heart is such a delicate thing. I flinch at every appointment and my child has no health issues, I can’t even begin to relate what you have going on. You are his soldier and how blessed your son is to have you and your husband ❤ sending so much love on this journey and healing.

@carlabarry-austin4720 28 минут назад

Thanks for the sharing and vulnerability. I felt those tears, Mama. You got this.

@tashahiggins3342 29 дней назад

Oh, Elyse. Watching this makes me wish I could just give you the biggest hug. I hope and pray for the best for you. ❤

@bekahanneful 29 дней назад

Big same

@TheNervousKnitter 29 дней назад

Don’t let your mind take you places you may never have to go. I know that’s easier said than done, but he’s still little, he has a lot of growing to do. Don’t be afraid to let yourself feel the peace that hope can give. The body knows how to heal its self… hold on to that… ❤️

@irishmarie9892 29 дней назад

Amazing advice! ❤❤❤😊

@Kate-vr5ud 2 дня назад

Oh Elyse. My heart goes out to you. Please remember that if not pumping means that you feel more relaxed, sleep better and less stressed, then that IS what is best for your bubba.❤

@justcallmejessz3712 22 дня назад

*_You never know how strong you are, until being strong is the only choice you have_* You are not ONLY pumping. It's your strength that gets Oliver through it all. Remember that you must care for yourself in order to care for Oliver. Like the masks on the airplane, put yours on first or you won't be able to put one on someone else. I am the patient. I developed severe chronic illness as an adult that has landed me in hospital more times to count. Countless surgeries and medical devices, home palliative care, the books. It was hard. HOWEVER. It has been SO much harder for my family. I cannot imagine how hard this experience is. I wish I had words to help make it better. Just know that you are loved and you are enough. ❤ Hugs to you. Not the weeny gentle hugs. The big bear squeezes that we think we don't want, but somehow was what we needed.

@Unfiltred_honey 29 дней назад

As a doctor in training it so important that I know this side of thing to better support families and their kids I know it’s scary sharing something like this but it matters I hope you do go through it and I hope you learn to put you first sometimes because having a happy mom is way more important to Oliver than him being on Brest milk

@erinjoyorange 28 дней назад

Feels kinda weird to thumbs up this video, but i just wanted you to know we appreciate your vulnerability. You ability to capture and explain how most Moms with kids in the NICU feel is a gift to us. It makes us feel seen and like our emotions are valid and normal.

@DebSaDrama 3 дня назад

I’m a mom of a heart kid. I feel you on every level. I know it’s SO hard. I wish I could sit and cry with you. You are NOT alone!

@fallensongbird77 5 дней назад

Please know you are not alone. My sister just had a baby in 2023 that was born with HLHS, essentially half of a heart. He's had 3 surgeries, and he's a fighter. Your little guy is going to make it. These babies are fighters and you are going to get through it. All of you. Miracles happen and it's one day at a time. Our little guy is now over a year old. Oliver is going to make it.

@nikoletteburns День назад

My brother has HLHS. He’s now about to be 22 and had 5 open heart surgeries. These babies are strong and grow to be such strong adults!!!

@emilyrasputin 29 дней назад

"I just wanted to expect the worst so anything good that happened could be like a happy surprise." The number of times I've had this exact OCD justification thought 😮‍💨 You are doing lots of things to make this less of a burden for him. It just doesn't feel like much because you never considered the possibility of doing anything but the best for him. You're doing great under these incredibly difficult circumstances. 💚

@shadeclifford5263 28 дней назад

Oh Elyse, I have never wanted to jump into my phone and hug a stranger so much in my life. I'm so proud of you and Jonas. Xx

@RebecaBly-mx5or 26 дней назад

As a parent of a medically complex/terminally I'll child my heart is with you. Every appointment it does feel hard to be confident in positive outcomes for our kiddos when we've been told so many negative things at once from multiple specialists. My mama heart breaks with you when you are facing such trying circumstances and please know you are widely supported and loved too. I found your content a little while ago and it always brightened my day. You are truly a bright light Elyse and I'm hoping for the best outcomes for you and your family. ❤❤❤

@Someone-fx5nv 7 часов назад

I had a premie baby that was in the hospital for 2 months.. when he was first born i attached my worth as a parent to how much milk i could produce. Since he wasnt home with me.. nurses cared for him mostly the only thing i had was milk.. and due to my health and meds i had to take my milk supply tanked. I was crushed i was doing everything i could to keep producing and driving myself insane. Finally one day i threw the pump away in anger and depression. We switched to formula and things got so much better for me. I focused on just being there for him and holding him and i wasnt constantly focused on when i needed to pump next and beating myself up for not producing enough or feeling like the nurses were judging me. It was so freeing. You do so much for oliver. Milk is not the most important. Taking care of yourself allows you to take better care of him. ❤❤

@JennieSh1986 28 дней назад

Oh sweetheart. This is so hard. I remember when my second baby was born. She and I had a traumatic birth resulting in PTSD. At night I wanted her as close to me as possible but during the day I didn't want to be responsible for her because I had already 'failed' her during her birth. I did not know how to fix it, how to make it right. What you're feeling right now is awful but not crazy. It's a sign that you love Oliver so very much and that is all he needs. You can figure everything else out one day at a time, one hour at a time, one minute at a time. And I know that the unknown is not easy for anxious people like us but try to accept knowing the next minute, the next hour, the next day. Let that be enough for now. You are wonderful and I can't tell you how much seeing these glimpses of your life have made me feel so much less alone in the world. xxxx

@idkwhodos2840 26 дней назад

This is so beautiful. I know that particular feeling of 'failure' too. But it isn't true, you gave more than most mamas have to! Take care of you 💕

@faunzi 28 дней назад

As an adult with a lifelong disability that has been fortunate enough to have a wonderful, high anxiety mother who has been through everything by my side-I see so much of my resilient mother in you, Elyse. You are doing amazingly and handling everything the best you can. It’s always one step at a time, forwards or backwards. And you are in the process of a long journey that is not easy-but you are doing it with as much love and light as you can. You are doing it all incredibly. 💖

@ginarebecca2 4 дня назад

Big hugs. Being a mom is gut wrenching when your babies aren’t well. God bless you. ❤

@paulstejskal 26 дней назад

Don’t ever apologize. It is a scary situation and you are doing your best.

@tracidevault3976 29 дней назад

Don't apologize for crying. You need to cry sometimes. That's hard to hear. As a mom of grown children who all had medical problems I feel that pain you radiate. It's heartbreaking when your child isn't well and you can't do anything to fix it. I'm sending love, hugs and prayers to you and your entire family. You make me smile and laugh and question the world around me. You're a very special person. Thank you!❤❤❤❤

@rhofloetic 29 дней назад

Praying for Baby Oliver and the whole family. ❤

@MuggleBorn775 21 день назад

As a mother of a 6 month old with VSD/ASD I understand how scary this all is. NEVER apologize for having feelings, especially in this situation. Your children are so lucky to have parents that love and care about them so much. Stay strong momma❤

@rachaelwood3837 25 дней назад

Sweet mama, cry as much as you need! Pump if you feel like you need to, don't pump if it's becoming a burden on your mental health. Oliver will still be fed and get the nutrition his body and brain need to keep growing healthy. I have been in a similar situation, and I can say my only regret was not taking better care of myself physically and mentally. You are amazing and I am constantly in awe of all you have accomplished! Keep pushing forward, and if pushing is too hard, hang in there, and if hanging in is getting too hard, ask for help and support from those you love. 💜

@claireisacamel 29 дней назад

As a person who had a CHD that wasn’t discovered until I was a teen, I can attest that they’re a slow slog of ups and downs and backwards and forwards and that the absolute best thing you can do to help your kiddo is to do whatever you can to just make it through today. You are THE MOST SUITED person to be his advocate and to usher him through these times, times he’s unlikely to remember because of his age. If you need to take a step back from pumping, I promise, he will be okay, because you being sturdy is the most important thing. (And when you aren’t feeling sturdy, that’s okay, too. Just take today for what it is, and get some rest and try to forge forward tomorrow.) You got this, E. Sending you all my love. 🤍

@dianedavidson5283 29 дней назад

One of the cool things about you is your emotional honesty. Sometimes we cry.

@caitlinreising9075 День назад

Oh sweetheart ❤ I’m so sorry. You’re so strong. You’re amazing. Your feelings are so real and so valid.

@My5kidzrock 26 дней назад

If it’s something you’re comfortable with, you could use donor milk. I’m positive there are dozens of mothers out there who are aching to support you in some way AND have more milk than they’ll ever be able to use themselves. It would be a way to feel like there’s SOMETHING you can do for Oliver, and be able to take one thing off your plate. 💖

@KimberlyGilbertDC 29 дней назад

All I can offer is my care of you and yours. A profound human going through a profoundly impossible event. I hold you and yours in my energy and thoughts.

@passengershamingparody 29 дней назад

We are all here for you and Oliver. He is so lucky to have someone like you as his Mama. We've got your back and are sending you all the love! Love, a Mom of 3 xoxoxo

@KJAJMurdoch 4 дня назад

Sending you so much love and support, there is an army behind you! As parents to additional needs kids - we never expect this when we have our kids. We would trade places with them in a heartbeat. NEVER apologise for tears, they are so healing. I hope you never feel alone Elyse, you have provided me and millions of people inspiration, strength and comfort - now we send it back to you!

@sarahleubner6425 9 часов назад

This video & your story really touched my heart. My little boy was a NICU baby & that feeling of helplessness is unbelievably hard. Everyone's already said what I wanted to say so I'll keep it short. Just know you are doing a really great job & that we're all lifting you up & hoping for the best. Big hugs Elyse

@mommabearmaryann8106 29 дней назад

My daughter had cancer as a small child. She did 2 1/2 years of chemo, regular bone marrow biopsies and spinal taps. It was hell on me. She handled it like a trooper. I call her my hero. But my point is when our children are faced with life threatening illnesses it hits the parents so much harder. The kids of course are scared. They don't fully understand what is happening. But we do. Our minds don't stop. We think the best and the worst of everything. It's a crazy roller-coaster of emotions. We know what is happening and it is torture to know you are very limited in how you can help. The best thing you can do is just be a momma. You are so much stronger thank you can ever imagine. You are everything to him. ❤❤❤

@oldasyouromens 29 дней назад

As a former disabled child and current disabled adult: We do understand, quite often more than the parent, what is going on. For the parent, they sensationalize, they fantasize, they have all the crazy thoughts that make no sense to the person it's actually happening to, but for us, it's just the very real, quiet feeling that our body is breaking down, that we actually may die because we feel it happening, and that we have to deal with this pain for as long as it lasts, even if that's forever. We still have to live our lives. There's no point in fantasizing about the worst.

@tessmoffett5512 29 дней назад

I have two tiny girls and I just can’t imagine what that must’ve been like for you to watch your poor baby struggle. I’m so relieved to hear that it’s in your rear view now.

@CL-mn1yq 27 дней назад

The summary of a caregiver's journey. 💙 It helps to sleep. You're not alone.

@constancebuckley3402 18 дней назад

Oliver just needs you to be the best version of you that you can be in the moment. If that means stopping pumping, then do that. Hang in there mama ❤

@melaniev4390 26 дней назад

Another pediatric nurse with a disabled child here. Your difficulty being hopeful is just you trying to protect your momma heart. ❤️ You are a rockstar for pumping this long. Either way you go is totally ok. I had to pump for a while and it SUCKS. So. ❤️

@user-wp6yy1fm6g 29 дней назад

Being a parent sucks sometimes. I'm not yet a parent, but ik my mom and dad have had their hardships with mine and my siblings's health. I remember my brother had a hernia when he was very little (I wanna say 18 months, I'm not sure). We were in the hospital for a couple days because he needed surgery to correct the issue and I remember my mom saying she had to hold him down in order for the doctors to give him anesthetia and stuff. You and your husband are both so very strong and Oliver is a fighter. Everything is going to work out for the best ❤❤

@mmartin7563 29 дней назад

My son spent time in the NICU, and I’ll never forget how overwhelmed I became and couldn’t function. When it’s your child, everything we know about ourselves just goes out the window. Thank you for sharing and being vulnerable and may Oliver come out the other side of this and have a super healthy childhood/life. 💙

@gingersnap3303 День назад

Oh Elise. I’ve been in this position and listening to you process how you battle with your expectations and emotions surrounding appointments took me right back to those moments. So many times a doctor with their updates just gut punched me and I’d be flattened by the latest, and then I’d look at my beautiful baby, and claw my way back to hope and a level of functioning and normalcy, only to get somewhat crushed at the next one. Today, by God’s grace, she is doing amazing, but I will always worry about her a little extra from my other kids. I totally understand the desire to somehow do something for you precious baby, but Elise, you ARE! Just by loving him and caring for him so well, pumping or no pumping. Your love and care for him is everything. Honestly watching this was like looking at myself 9 years ago and MAN i would never choose to relive that season but also- I see you and I know it feels SO SHITTY, but you’re moving through it together and I’m super proud of you for how you’re processing it all.

@Liverpool2Plano1695 25 дней назад

I don’t think it’s talked about enough how incredibly hard exclusively pumping is. (I exclusively pumped for my son, also named Oliver 😊 for 9 months and it was one of the hardest things I’ve ever done.) I was sooo stubborn and would not take the advice of so many around me to stop pumping when it was destroying me. It is the nature of a mom to sacrifice, yes, but at what cost. When I finally gave in and stopped I felt a hundred pounds lighter and felt like I could enjoy and love my son in a whole new capacity. You are a literal superwoman for every single thing you have done and are doing for your son. Your value as a mom is not measured by the ounces of milk you make. Oliver will know your love in unending ways. You are an exceptional mom no matter what and when you decide is right for you

@songbird0402 28 дней назад

These comments are pure joy. It’s so awesome to see that social media hasn’t ruined us all. Did expect to have the comments make me cry. Pure Joy!

@lindahoffman2692 27 дней назад

Songbird, That’s one of the most Awesome things about Elyse is that by sharing her Vulnerability she DRAWS OUT THE KINDNESS AND KINSHIP and the Best of us, especially since most of us here have experienced emotional crisis and challenges in LIFE too, often WITHOUT much support! That makes the supportive TENT here welcoming to everyone. And you’re so right, sadly, that it’s all too Rare these days. 💕🙏💕

@laurienelson5200 29 дней назад

Oh Elyse...please please hear this!! You are doing great! You don't need permission to pump or not pump. The feelings you are having are so normal...your baby is such a fighter and you should be so proud. My heart breaks that you and your family are experiencing this health issue. You are so tough Elyse..you got this!

@nicolepierce6700 19 дней назад

I feel you, Mama! Just remember, what's best for you will be good for your child, too. You are doing the best you can!!❤

@lindsiahearn5810 24 дня назад

Parents of heart warriors are stronger than anyone could ever imagine. What you guys are going through is immensely hard and you should not feel like you have to justify ANY of your feelings or choices. Sending prayers from NC!

@Nat-A-lie_goober 29 дней назад

I know I’m not alone when I say I cried with you! As a mom who also felt that need to just “give some type of help” to your kid through pumping… you’re just a really good mom Elyse

@PrairieDawnC 29 дней назад

NEVER apologize for your feelings. Tears are ok. Hugs. Trust yourself, Mom and Dad. You're growing amazing kids.

@shelleysharp7005 15 дней назад

On behalf of every parent who will find this when they're struggling with their own child's illness - THANK YOU for sharing this, for being vulnerable, for being genuine and authentic as always.

@sevenandaswitchblade 15 дней назад

Elyse, you make me feel so safe as a person who feels and sees the world similarly to you.

@stacyzingg800 29 дней назад

Awww beautiful Mommy never apologize for your feelings. I wouldn't have been able to get through that without tears. Sending you love and healing for your precious little one 💕

@claudiajade624 29 дней назад

As a mum of a 20 month old I can't even Start to watch one of your videos discussing Oliver's medical situation without tearing up. So, Don't ever apologise for getting emotional. Of Course you are emotional

@ameliapalmer2248 16 дней назад

We have been in the “2 steps forward, 1 step back” cycle for close to 2 years now with our CHD hero (open heart surgery at 1 month). It took a long time for me to give myself permission to do things that were right for me but it turns out that that IS what’s right for them. I also know the struggle of knowing it could be worse and holding space for that thought while also allowing yourself to be disappointed about the way his recovery is going. You are not alone. Thank you for bravely sharing the hard stuff. ❤

@yo-yochica5992 29 дней назад

You are a great mom, Elyse. Oliver being a happy baby is because you and Jonas are great parents. Sending positive thoughts, well wishes & prayers to you. 🫂

@offthehookmamma 28 дней назад

I'm a mom to a disabled child and your strength and vulnerability is so appreciated. More than you know I wish we had a community rooting for us on appointment days. Anyways I'm crying you're not crying, Oliver is at the start of his journey with so many warriors by his side. I know he's going to do amazingly. Give him some time. He's got this. Slowly but surely.

@alexandradiamond2264 21 день назад

You are doing everything for him by being the best mom, showing up and doing the best you can day in and day out with everything going on. That is not easy. And from one mom to another, pumping is not the only thing you are doing for him nor should it ever be a measurement to how much you can do when you feel like you aren’t doing enough. You are doing enough. You do not need to pump! All of us moms can imagine. Thinking of you all! ❤ you are an amazing Mom!

@makennasmommy04 25 дней назад

So sorry you are all growing through this. Sounds like with even the set back, they have things under control! ❤my prayers are with him for his health and with you for strength to get through all the things! ❤