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

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  • Опубліковано 21 тра 2024
  • 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. ❤️‍🩹
  • Розваги

КОМЕНТАРІ • 2,1 тис.

  • @thenakedpainter3731
    @thenakedpainter3731 23 дні тому +5047

    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
      @crissys2angels900 23 дні тому +47

      Agree 100%

    • @MeUrWishGranted
      @MeUrWishGranted 23 дні тому +63

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

    • @lulumoon6942
      @lulumoon6942 23 дні тому +24

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

    • @NovasYouTubeName
      @NovasYouTubeName 23 дні тому +19

      Lovely supportive comments ❤❤❤

    • @rueriddle
      @rueriddle 23 дні тому +13

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

  • @snaliens
    @snaliens 24 дні тому +2147

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

    • @natashabeachy5159
      @natashabeachy5159 24 дні тому +20

      Came to say this!

    • @alywren6438
      @alywren6438 23 дні тому +12

      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
      @wintergirll 23 дні тому +4

      100%

    • @rearles4951
      @rearles4951 23 дні тому +6

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

    • @MikaylaPandas
      @MikaylaPandas 23 дні тому +9

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

  • @randiaeshliman6015
    @randiaeshliman6015 17 днів тому +373

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

  • @ninamikus4382
    @ninamikus4382 18 днів тому +442

    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
      @tarajh 15 днів тому

      🎯 🎯 🎯

  • @imuwmmp
    @imuwmmp 23 дні тому +2171

    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
      @yarnkelly3606 23 дні тому +63

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

    • @torijade2246
      @torijade2246 23 дні тому +43

      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
      @PlatinumMyst 23 дні тому +27

      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
      @brandikaufmann2644 23 дні тому +3

      Yes! ❤❤❤

    • @imuwmmp
      @imuwmmp 23 дні тому +24

      @@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
    @joys2363 24 дні тому +707

    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
      @airhutt 24 дні тому +11

      Yes! Still one step forward I love that.

    • @binarycupcakes
      @binarycupcakes 23 дні тому +7

      This! ❤

    • @bodyofhope
      @bodyofhope 23 дні тому +6

      YES!!! You're still standing.

  • @audreyneal6168
    @audreyneal6168 20 днів тому +775

    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
      @rachellesawyer6523 19 днів тому +13

      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
      @JessicaViolaT 19 днів тому +17

      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.
      @CoffeePlease. 19 днів тому +11

      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
      @audreyneal6168 19 днів тому +4

      @@CoffeePlease. aw thank you, much appreciated 💜

    • @stacibenkoussa4342
      @stacibenkoussa4342 18 днів тому +2

      What love you shared ❤❤❤

  • @ellenkunkel8845
    @ellenkunkel8845 18 днів тому +319

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

    • @Thepiebaldchart
      @Thepiebaldchart 14 днів тому +4

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

  • @DinoReader
    @DinoReader 23 дні тому +754

    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
      @idk6144 23 дні тому +23

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

    • @KD214_
      @KD214_ 18 днів тому +1

      Yes, agreed 👏🏻

    • @tarajh
      @tarajh 15 днів тому

      🎯 🎯 🎯

  • @Katalina_K
    @Katalina_K 24 дні тому +274

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

    • @deltamimosabridges2916
      @deltamimosabridges2916 21 день тому +2

      Amen.

    • @cheryldueck318
      @cheryldueck318 20 днів тому +4

      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
      @olivia_ismyname 19 днів тому +4

      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
      @BB-we3sk 18 днів тому +2

      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
      @RikkiTikki25 18 днів тому +1

      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
    @harkirankaurkalkat9739 18 днів тому +179

    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
    @danielleturner4633 8 днів тому +10

    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 ❤

  • @sarahleony
    @sarahleony 23 дні тому +193

    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
      @Ruth78620 22 дні тому +4

      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
      @curiouslytot1950 17 днів тому

      @@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

  • @desertviolet581
    @desertviolet581 22 дні тому +143

    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
      @camille-7015 9 днів тому

      You got this momma!! ❤❤❤

  • @2529cb
    @2529cb 19 днів тому +40

    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 ❤

  • @andreacamnugent
    @andreacamnugent 20 днів тому +184

    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.

  • @lindahoffman2692
    @lindahoffman2692 24 дні тому +262

    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
      @lyric8529 23 дні тому +3

      🩵

    • @freedomishavingachoice3020
      @freedomishavingachoice3020 23 дні тому +6

      "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
      @natalieJe10 23 дні тому +6

      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
      @mickycarcar 22 дні тому +6

      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
      @Ruth78620 22 дні тому +1

      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.

  • @tortaylor7748
    @tortaylor7748 23 дні тому +138

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

  • @jeanniebylinowski6475
    @jeanniebylinowski6475 21 день тому +87

    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.

  • @Alveiren
    @Alveiren 5 днів тому +9

    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.

  • @annalisabeth
    @annalisabeth 23 дні тому +257

    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
      @lmatrasko 23 дні тому +8

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

    • @BrittKatSlat
      @BrittKatSlat 23 дні тому

      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
      @tinkeramma 21 день тому +4

      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
      @MatrixxPhoenixx 19 днів тому

      Love this 🥺

    • @ceciliamarie13
      @ceciliamarie13 10 днів тому

      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 ❤

  • @Kelly_See
    @Kelly_See 23 дні тому +117

    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.

  • @cindynelson4824
    @cindynelson4824 17 днів тому +17

    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

  • @nathaliaacosta7638
    @nathaliaacosta7638 3 дні тому +2

    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!

  • @libbypropp4846
    @libbypropp4846 23 дні тому +125

    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 💜

  • @Badgirlgibbs
    @Badgirlgibbs 24 дні тому +157

    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.

  • @treasurebessler7213
    @treasurebessler7213 20 днів тому +50

    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🖤🖤

  • @laurennash6147
    @laurennash6147 20 днів тому +75

    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.

  • @nurseelle
    @nurseelle 23 дні тому +133

    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
      @katlangdon 23 дні тому +12

      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 💕

  • @maddiecrosby3899
    @maddiecrosby3899 23 дні тому +81

    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. ❤

  • @lbird524
    @lbird524 21 день тому +45

    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
      @M_SC 19 днів тому +1

  • @revshello
    @revshello 20 днів тому +25

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

  • @reillybreen6257
    @reillybreen6257 23 дні тому +63

    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.

  • @North_West1
    @North_West1 24 дні тому +127

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

  • @CL-mn1yq
    @CL-mn1yq 22 дні тому +17

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

  • @rubytuesdayism
    @rubytuesdayism 21 день тому +20

    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.

  • @drewharris7785
    @drewharris7785 23 дні тому +118

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

  • @Byteme363
    @Byteme363 24 дні тому +79

    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 ❤

  • @justcallmejessz3712
    @justcallmejessz3712 16 днів тому +4

    *_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.

  • @emiliemoss9386
    @emiliemoss9386 17 днів тому +5

    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.

  • @cynthiajfaulkner8655
    @cynthiajfaulkner8655 23 дні тому +69

    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.

  • @sharonzotoff3975
    @sharonzotoff3975 23 дні тому +75

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

    • @nottherealrabbit
      @nottherealrabbit 23 дні тому +2

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

    • @I.m-Me
      @I.m-Me 23 дні тому +4

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

  • @melaniev4390
    @melaniev4390 21 день тому +29

    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. ❤️

  • @nickimarieinc
    @nickimarieinc 21 день тому +1

    I respect you so much for the changes you made for yourself and your family (ie: Tiktok)… praying for you and Oliver’s heart ❤❤❤🤍🤍🤍⭐️⭐️⭐️ and cheering you all on.

  • @erinjoyorange
    @erinjoyorange 23 дні тому +43

    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.

  • @tashahiggins3342
    @tashahiggins3342 24 дні тому +57

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

  • @nilon1234
    @nilon1234 4 години тому

    Elyse don't apologise for crying! Just cry and I'm crying with you girl! All the love to you and your family ❤

  • @spiritedaway0tutu
    @spiritedaway0tutu 4 дні тому +1

    As someone who is a patient with a disability that has felt like 12 steps forward and 1000 steps back sometimes, I promise it gets better. It really does.
    The way you feel right now is natural. It’s okay to be upset. It’s okay to be scared. Just take it one day at a time.

  • @TheNervousKnitter
    @TheNervousKnitter 24 дні тому +36

    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… ❤️

  • @emilyrasputin
    @emilyrasputin 24 дні тому +43

    "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. 💚

  • @makennasmommy04
    @makennasmommy04 19 днів тому +1

    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! ❤

  • @huskiemomof2
    @huskiemomof2 12 днів тому +1

    Elyse - for some reason I didn't have my notifications on you tube. My heart was so filled when I saw you. And I am sending all the good healing vibes for Oliver. I can't imagine how much this is for everyone. Sending so much love ❤

  • @Unfiltred_honey
    @Unfiltred_honey 23 дні тому +29

    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

  • @shadeclifford5263
    @shadeclifford5263 23 дні тому +18

    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
    @RebecaBly-mx5or 21 день тому +9

    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.
    ❤❤❤

  • @mommabearmaryann8106
    @mommabearmaryann8106 23 дні тому +66

    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
      @oldasyouromens 23 дні тому +9

      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
      @tessmoffett5512 23 дні тому +1

      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.

  • @tracidevault3976
    @tracidevault3976 24 дні тому +30

    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!❤❤❤❤

  • @My5kidzrock
    @My5kidzrock 21 день тому +6

    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. 💖

  • @shelleysharp7005
    @shelleysharp7005 9 днів тому +1

    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.

  • @faunzi
    @faunzi 23 дні тому +26

    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. 💖

  • @JennieSh1986
    @JennieSh1986 23 дні тому +19

    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
      @idkwhodos2840 21 день тому

      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 💕

  • @paulstejskal
    @paulstejskal 21 день тому +5

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

  • @MuggleBorn775
    @MuggleBorn775 16 днів тому +2

    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❤

  • @rhofloetic
    @rhofloetic 24 дні тому +18

    Praying for Baby Oliver and the whole family. ❤

  • @dianedavidson5283
    @dianedavidson5283 23 дні тому +14

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

  • @janettep
    @janettep 19 днів тому

    You are doing so well. One day. One step, One minute at a time. It’s okay to feel down, as anyone in your situation would be upset. You are doing so well. I can see how much caring for Oliver has made your stronger as a person

  • @rachaelwood3837
    @rachaelwood3837 20 днів тому +4

    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. 💜

  • @passengershamingparody
    @passengershamingparody 24 дні тому +26

    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

  • @claireisacamel
    @claireisacamel 23 дні тому +21

    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. 🤍

  • @tinabrisbois2866
    @tinabrisbois2866 2 дні тому

    I just want to wrap you up I comfort like a blanket. You are so strong and brave and...just wanted to say thank you for sharing everything. I can't express that enough.

  • @thecourtneysjoberg
    @thecourtneysjoberg 4 дні тому

    Holding my 4 week old on my chest while watching this and my heart hurts for you. You are doing such a good job! Proud of you! Your boys are so lucky to have you and Jonas as their parents!!!

  • @laurienelson5200
    @laurienelson5200 23 дні тому +12

    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!

  • @Nat-A-lie_goober
    @Nat-A-lie_goober 23 дні тому +13

    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

  • @heytogrey
    @heytogrey 21 день тому +1

    I love your painting! And I love how much you love your children. I have no sage wisdom to offer, but it takes a lot to go through what seems impossible and still be honest with yourself and others and do what you have to do. And somehow you're doing it. So there's that.

  • @shelbywells4624
    @shelbywells4624 21 день тому +1

    Oh honey, so so sorry. You’re doing so well! Praying for strength for you and Jonas… and little Oliver. So glad August and he are having all the giggles. So glad you’re doing art to help your soul as you take this journey. Medicine today does incredible things, as is the milk you are giving his little body. Thank you for sharing and we are all rooting for you. ✨

  • @KimberlyGilbertDC
    @KimberlyGilbertDC 23 дні тому +174

    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.

  • @mmartin7563
    @mmartin7563 23 дні тому +14

    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. 💙

  • @HappeningsatLamgoFarms
    @HappeningsatLamgoFarms 16 днів тому +3

    Oliver is in a great position right now. This is just the beginning. We didn’t have that chance. Our son was born with undiagnosed HLHS and passed away June 6- 27 years ago. We have another son with fenestrated holes in his heart. Again- undiagnosed but during another surgery it was discovered. He is now 7 yrs old and all holes are closed and he is doing great. Yes he is on meds for life but we always compare this to our other son and well- it’s hard to hear but you’re gonna be ok. One day at a time. ❤

  • @amandaschule45
    @amandaschule45 3 дні тому

    What’s best for you IS what’s best for your baby ❤. I know pumping feels like you’re doing something, but loving him and advocating for him is also a really important role and job

  • @songbird0402
    @songbird0402 23 дні тому +7

    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
      @lindahoffman2692 22 дні тому +2

      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. 💕🙏💕

  • @PrairieDawnC
    @PrairieDawnC 23 дні тому +8

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

  • @Liverpool2Plano1695
    @Liverpool2Plano1695 20 днів тому +4

    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

  • @christinakinsley9210
    @christinakinsley9210 20 днів тому +3

    Sweet girl. My heart breaks for you and your family during this hard time. Just know that your village is here for you and praying for you and things will get better. You can absolutely do what you feel is right. Taking care of Oliver is what you are made to do and you will do what's right. I wish we could all just hug you or really do something to help you and your family. Your followers care so much about you and we are all feeling this with you. Lean on your support in this hard time. Take care of yourself and your family. Sending SO MUCH LOVE to you guys.

  • @user-wp6yy1fm6g
    @user-wp6yy1fm6g 24 дні тому +19

    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 ❤❤

  • @stacyzingg800
    @stacyzingg800 24 дні тому +10

    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 💕

  • @jamieking-morris2830
    @jamieking-morris2830 3 дні тому

    I want to give you a hug so badly. You are doing an amazing job and your strength is awe inspiring!!

  • @alanahein7808
    @alanahein7808 21 день тому +1

    You are so beautifully human, I love the simplicity and rawness of you existing and accepting the imperfections of life.

  • @yo-yochica5992
    @yo-yochica5992 23 дні тому +7

    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. 🫂

  • @ArrowOfTruth01
    @ArrowOfTruth01 23 дні тому +4

    It is clear you, your husband, and your son are doing your absolute best and that is enough. Thank you for choosing to share this with us.

  • @Chlorayy
    @Chlorayy 17 днів тому

    Thank you for being so candid. You are such a strong person, a strong mother.

  • @alixorosexo18
    @alixorosexo18 13 днів тому

    Thank you for allowing us to support you. I want you to know you’re doing everything you can. We can see that. 💜

  • @bristol907
    @bristol907 24 дні тому +12

    Hope Oliver's doing well. Sending much love to you all! ❤❤❤❤

  • @jilianl4060
    @jilianl4060 24 дні тому +9

    If you choose to stop breastfeeding, that is ok. There are amazing formulas out there, and your son has a team of people monitoring him. It might help you better cope with hearing news that is not as good as you had hoped it would be. Taking care of you is taking care of him.

  • @thingswithmeg
    @thingswithmeg День тому

    Elysie, thank you for sharing your true raw emotions, it takes courage and vulnerability to do so, I will keep you and Oliver in my thoughts ❤️ and of course the rest of the family!

  • @stephaniegaranzini4147
    @stephaniegaranzini4147 15 днів тому

    Thank you for being so vulnerable and sharing your story. You are an amazing mom and your family is so so so lucky to have you. ❤

  • @offthehookmamma
    @offthehookmamma 23 дні тому +4

    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.

  • @claudiajade624
    @claudiajade624 23 дні тому +6

    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

  • @samanthaderemercoaching
    @samanthaderemercoaching 16 днів тому

    You are doing such an amazing job. These tears are so needed and you just go ahead and let them out. You are still shining SOOO BRIGHT.

  • @hollynbelt4753
    @hollynbelt4753 19 днів тому

    You’re doing so amazing I can’t even imagine how you’re doing it. You’re so strong and so is Oliver ❤️

  • @DonnaDanner-wk2ru
    @DonnaDanner-wk2ru 23 дні тому +5

    You DO NOT need permission to do what you feel is right for you and your child. Please take care of yourself first so you can take care of Oliver. You are a great mom!