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.
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!!! 🫂💜🫂💜🫂
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.
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 ❤❤❤
@@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.
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 🇳🇱
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.
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 💜
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.
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.
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. ❤
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.
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.
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! 😢
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
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!! ❤️❤️🙏😇
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.
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.
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.
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 ❤
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
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.
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 🩵
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.
@@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
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!
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.
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 💜
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 ❤
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.
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!
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.
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?
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.
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 ❤
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 ❤
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 💕
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.
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.
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.
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.
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. ❤
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.
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.
"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. 💚
Sending love to you sweet mama! There is no force on this earth more fierce than a mother’s love. Wishing you all the best as you work through this hard time.
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.
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
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.
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🖤🖤
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. 💖
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!❤❤❤❤
*_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.
I just wanted to step in and send you so much love. Thank you for being transparent and authentic. Never apologize for your feelings. Give yourself grace. You’re amazing just as you are ❤
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… ❤️
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 💜
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 ❤
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. 💜
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. 🤍
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
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
Sending love to you and saying prayers for Oliver. As mother of an adopted baby my daughter and I bonded over a bottle. The most important is that you take care of yourself so that you can take care of your family. ❤❤❤
Thank you for being so venerable. You don't owe us these updates, you don't owe anyone access to your life, but I appreciate you giving voice to something so many mothers have struggled with.
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.
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.
Your ability to cry and be authentic is such a strength. You never have to apologize for that. You are going through something really hard. I hope you'll get more sleep now and get the support *you* need while you support your son ❤
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. 💙
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. ❤❤❤
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.
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.
I am in awe of your ability to explain what you are feeling and your bravery for putting it out there. I am also a mom of a child with a medical anomaly (Neurofibromatosis), who is now 32. I felt blindsided over and over and over again. I hear you. I never knew what to expect with each appt. I was a slow learner. I finally learned to anticipate and clear the decks for the day or two after big checkups just to deal with any change (or “no change”, which was cause for celebration.) We tried to maintain as much of a routine as possible at home, in between the mayhem, and eventually got to a new normal. The benefits of routine were almost as much for me as it was for kiddo. I was lucky(?) in that a good friend had a child with a (different) medical anomaly a couple years before me and provided a shoulder to cry on. I think the being hit by a truck emotions are universal to parents of sick kids. Nothing in “what to expect when you’re expecting” prepares you for this. But in some sad twist, I think having a sick kid is a blessing, because you will never ever take your kids for granted. Peace be with you.
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
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. ❤️
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. 💕🙏💕
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! ❤
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 ❤❤
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!
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. 🫂
You should never apologize for crying. You are much stronger than you realize. You are worried about someone you love and are doing everything you can do for them. You are such an incredible mother and a strong inspiration.
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. ❤❤❤
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 💕
Oh Elyse. You’re so strong and so beautiful and I’m so inspired by your transparency. Your babies are so blessed to have you!! Thank you for allowing us to all go along on this very real and raw journey. I will keep your family in my thoughts and prayers 🩵
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❤
So sorry, Elyse! You're such a sweet presence on the interwebs and to see your family struggle is just not fair! Wishing a turn in the story to come swiftly for you guys. I love how even though it sucks and is so tiring and scary, your smile and joy in sharing about your boys and your art STILL shines even in the darkness I know you are in right now. Love from Seattle!
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.
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
Thank you for your vulnerability. For expressing yourself consciously and honestly. I'm holding the vision of the day when this is all behind you and Oliver is running around with vitality and strength that comes from going through something like this. All my Love.
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.
Agree 100%
As a mom of a special needs child and a nurse of medically fragile kids, I 100% agree!
Great words, thank you, and best to you. 🙏🕊️
Lovely supportive comments ❤❤❤
We do all love you and your family ❤❤❤ well said
Please don’t EVER apologize for crying. You have a village holding you up so cry cry cry!!
Came to say this!
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!!! 🫂💜🫂💜🫂
100%
It’s entirely human to cry. Let it out. We are here with you.
Im so glad she fully came to youtube and left tiktok. Everyone was so cruel to her. RUclips loves her
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.
Thank you for saying this. I wish desperately that someone had said this to me with my last.
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 ❤❤❤
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. ❤❤❤
Yes! ❤❤❤
@@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.
Best breast feeding advice I ever received. “nursing your baby is a partnership. It only works if it is working for both of you.”
This is so good.
❤
Remember: Oliver worries about none of this. Look at his joy. You got this Mama.
This Elyse. Lean into his joy. And do whatever it is you have to do, to feel it and share in it with him. 🤍
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 🇳🇱
Yes! Still one step forward I love that.
This! ❤
YES!!! You're still standing.
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.
I love this. “Your oxygen mask first”. Simple but a powerful reminder
Yes, agreed 👏🏻
🎯 🎯 🎯
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 💜
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
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.
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. 🥄🫶🏻
@@MoreCoffeePlease. aw thank you, much appreciated 💜
What love you shared ❤❤❤
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.
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. ❤
🎯 🎯 🎯
Medical ptsd is a thing. For people who are caretakers too. You arent alone with feeling horrific going to a hospital
Amen.
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.
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.
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! 😢
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
Crying is just your body’s way of releasing emotion it can’t hold. Never apologize for emotions
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!! ❤️❤️🙏😇
🩵
"Pre worry" AKA "Please for the love of sandwiches someone make a plan that sounds like it might work while not making me evil."
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.
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.
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.
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 ❤
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
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.
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 🩵
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.
@@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
Informed and supported is best. Fed is standard.
He has two strong loving parents to help him through it.
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!
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.
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.
❤❤❤ Or emotions about anything.
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 💜
1. You're allowed to cry and be upset; you don't need our forgiveness. 2. You rock. 3. that painting is awesome!
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 ❤
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.
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!
You got this momma!! ❤❤❤
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.
Heart and lung transplant! How amazing. Sending you so much love, and hopes you you remain healthy and strong. ❤
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?
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.
Love this 🥺
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 ❤
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 ❤
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 💕
I want to give you a hug so badly. You are doing an amazing job and your strength is awe inspiring!!
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.
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.
He's loved. He's happy. He's growing. That's what's important. Give it time...he'll get there.
Happiness really does help improve your health, just like stress can do the opposite. Just keep showing him love 💖
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 ❤
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.
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.
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. ❤
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.
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.
Oliver is loved beyond measure and that’s all he needs. Be kind to yourself.
I really do think that what is best for you IS what is best for him. You have done such an amazing job and if you need to stop that is OK ❤
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.
Absolutely agree!
"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. 💚
Oh, Elyse. Watching this makes me wish I could just give you the biggest hug. I hope and pray for the best for you. ❤
Big same
Sending love to you sweet mama! There is no force on this earth more fierce than a mother’s love. Wishing you all the best as you work through this hard time.
I didn’t know you were dealing with all of this. Much love and light to you and yours. Best of luck to you.
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.
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
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
Remarkable story sharing. Thank’s Elyse.
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.
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!!!
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🖤🖤
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. 💖
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!❤❤❤❤
*_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.
I just wanted to step in and send you so much love. Thank you for being transparent and authentic. Never apologize for your feelings. Give yourself grace. You’re amazing just as you are ❤
One of the cool things about you is your emotional honesty. Sometimes we cry.
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… ❤️
Amazing advice! ❤❤❤😊
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 💜
❤
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 ❤
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. 💜
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. 🤍
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
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 💕
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
Sending love to you and saying prayers for Oliver. As mother of an adopted baby my daughter and I bonded over a bottle. The most important is that you take care of yourself so that you can take care of your family. ❤❤❤
Thank you for being so venerable. You don't owe us these updates, you don't owe anyone access to your life, but I appreciate you giving voice to something so many mothers have struggled with.
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.
The summary of a caregiver's journey. 💙
It helps to sleep. You're not alone.
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.
Your ability to cry and be authentic is such a strength. You never have to apologize for that. You are going through something really hard. I hope you'll get more sleep now and get the support *you* need while you support your son ❤
You're a really wonderful mom, and I'm so proud of you and your vulnerability. You're doing the best you can and that's enough 🖤
Praying for Baby Oliver and the whole family. ❤
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. 💙
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. ❤❤❤
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.
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.
Elyse don't apologise for crying! Just cry and I'm crying with you girl! All the love to you and your family ❤
I am in awe of your ability to explain what you are feeling and your bravery for putting it out there. I am also a mom of a child with a medical anomaly (Neurofibromatosis), who is now 32. I felt blindsided over and over and over again. I hear you. I never knew what to expect with each appt. I was a slow learner. I finally learned to anticipate and clear the decks for the day or two after big checkups just to deal with any change (or “no change”, which was cause for celebration.) We tried to maintain as much of a routine as possible at home, in between the mayhem, and eventually got to a new normal. The benefits of routine were almost as much for me as it was for kiddo. I was lucky(?) in that a good friend had a child with a (different) medical anomaly a couple years before me and provided a shoulder to cry on. I think the being hit by a truck emotions are universal to parents of sick kids. Nothing in “what to expect when you’re expecting” prepares you for this. But in some sad twist, I think having a sick kid is a blessing, because you will never ever take your kids for granted. Peace be with you.
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
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. ❤️
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!
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. 💕🙏💕
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! ❤
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.
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 ❤❤
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!
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. 🫂
You should never apologize for crying. You are much stronger than you realize. You are worried about someone you love and are doing everything you can do for them. You are such an incredible mother and a strong inspiration.
Elyse, you, oliver, august and Jonas are so loved! You’re exactly the mom your babies need and you are doing such an amazing job!
NEVER apologize for your feelings. Tears are ok. Hugs. Trust yourself, Mom and Dad. You're growing amazing kids.
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.
❤❤❤
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 💕
Oh Elyse. You’re so strong and so beautiful and I’m so inspired by your transparency. Your babies are so blessed to have you!! Thank you for allowing us to all go along on this very real and raw journey. I will keep your family in my thoughts and prayers 🩵
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❤
So sorry, Elyse! You're such a sweet presence on the interwebs and to see your family struggle is just not fair! Wishing a turn in the story to come swiftly for you guys. I love how even though it sucks and is so tiring and scary, your smile and joy in sharing about your boys and your art STILL shines even in the darkness I know you are in right now. Love from Seattle!
Hope Oliver's doing well. Sending much love to you all! ❤❤❤❤
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.
I only ever watched your shorts. Thanks for sharing this too. You’re a great mom.
P.s. so cute to see my fellow RNs giving support.
I cried too. You're not alone. You're doing amazing even though it's beyond challenging. Thank you for sharing. I hope it helps to talk. 💜💜💜💜
Don’t ever apologize. It is a scary situation and you are doing your best.
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.
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
Thank you for your vulnerability. For expressing yourself consciously and honestly. I'm holding the vision of the day when this is all behind you and Oliver is running around with vitality and strength that comes from going through something like this. All my Love.
Thank you for the update. It’s an emotional journey, never apologize for letting the emotions out. Sending your family hugs and positive thoughts.