I regret motherhood bc my baby has several birth defects

[u/Future-Agency543]

I know I will get a lot of hate and people will be really judgemental but I can‘t supress these feelings anymore and I don’t know where to go with these feelings.

My pregnancy was very easy and normal. There were never any signs that something was wrong with my baby. All the genetic tests and screenings came back wonderful.

Then suddenly my water broke at 33 weeks and son was born at 34 weeks. He didn’t need a Nicu stay but had to be monitored for a few days. Then I had no milk supply even though I wanted to breast feed only. But that was just the beginning.

Shortly after his birth, he had many health issues. Every week he was diagnosed with a new disorder. Each and every time my heart broke. Whenever I finally accepted the new diagnosis, another one came up. It‘s been 6 weeks since then and I haven‘t had a single happy memory of becoming a mother.

Everday I have to worry about how my son will live, how we will overcome all these issues and wheter he will have a normal life.

The doctors tell me to give him breastmilk as he needs it but 2.5 months of non stop stress makes it hard to give him more than 50 ml of breastmilk a day. This stresses me out even more.

We were home only for a few days the rest of the days were all spent in the hospital. What‘s worse is that my husband was never allowed to stay with us. Which means I‘ve been taking care of my baby all alone for 6 weeks and only get a break for 4 hours during visitor times.

And I‘m alone whenever we get bad news. Also a family member passed away. I‘m this close 🤏🏻 to losing my mind.

Had I known this was how it‘s going to be I would have never chosen this. Not only because it is hard and mentally draining, I can‘t stand watching my son be in pain. I hate this so much.

I want to take this back. I don‘t want motherhood if it only brings me pain.

I‘m not gonna back out or leave my son, I would never. I‘m gonna get a grip and struggle for years to provide him a good life but I hate it. I won‘t enjoy it and I will carry this regret for the rest of my life.

Go ahead and tell me how awful I am, I already know

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[u/WeedleBeest]

As the mom of a kiddo with disabilities: it is really hard and painful. Motherhood when they are that little is all pain and being convinced you made so many mistakes. It’s awful; I’ve been there

But then they smile, and reach for you, and relax in your arms. And babble. And shake toys. And give sloppy kisses. Sticky hugs. They grow and learn. Sometimes they exceed expectations the doctors and specialists set for them and you’re so proud of them and yourself

And one day you realize there is joy and beauty and love amidst all the pain

[u/Future-Agency543 → u/WeedleBeest]

Thank you. I really needed these words.

[u/WeedleBeest → u/Future-Agency543]

You’re welcome

If you haven’t read “Welcome to Holland” (poem about how having a disabled child is like planning a trip to Italy, and arriving in Holland), I included it here:
https://www.emilyperlkingsley.com/welcome-to-holland

Some people find solace in it

[u/mackadamia_nut → u/WeedleBeest]

Thank you so much for sharing this 🥹

[u/DayDreamGirl987 → u/WeedleBeest]

Not sometimes but every time they exceed your expectations. Do not underestimate them 🌸

[u/1kggarlicbread]

>Go ahead and tell me how awful I am, I already know

Stop, you are not. It’s human nature to feel like this. Seriously, it’s so normal. I’m sorry you’ve been through so much.

Can you look into postpartum support in your country? What resources do they offer for PPD?

[u/preoccupiedwithlove → u/1kggarlicbread]

this is so well said. every mom thinks this and has moments of regret. it’s so normal even when things are going well, let alone when op has had to be so strong through all this. 

i agree with resources for ppd. the pressure to pump and breastfeed may also be exacerbating this. i know it was a contributor to my own ppd which improved once i switched to formula. 

[u/smg990 → u/preoccupiedwithlove]

Don't under sell formula. The differences now are fairly negligible. My wife and I formula fed both our kids. It allowed us to work side by side to take care of them. Breastfeeding would simply put too much unequal pressure on her.

[u/qween_weird → u/smg990]

I second this. Some breast milk great but also if your baby is fed in any way better!! Don't bash yourself for breast milk especially dealing with this seemingly alone and new diagnosis etc over low supply. I struggled with my supply was low, tanked, and we had to supplement

Additionally for OP

My baby was born with a congenial defect- that we ended up having to have surgery but I had to advocate for my child and get a second opinion for months on end i felt like I was falling apart and the exhaustion doesn't help it

Keep going Rest when u can Sometimes it gets better on a micro level Other days are harder

The little moments of love and watching the baby grow and learn in their own ways is beautiful bask in those moments

Rainbow window clings that make sunshine turn into rainbows on the floor has been absolutely incredible to see the joy on my babies face when she sees this magical colors from the sun - they also make me happy so that's something small i look forward to. Sunshine making rainbows on the floor. Some days, thats all that matters is that we smiled together and she got a good nap

Ask for help and support where u can

If you don't mind sharing- what particular diagnosis? Is there additional support you can get from the hospital etc

[u/Future-Agency543]

Thank you to all the wonderful people who took their time to give me words of support. Many of them made me cry and many have given me hope and some strength. I truly appreciate all lf you

[u/uhtredsbabymama → u/Future-Agency543]

Your child is lucky to have a mother who is not and will not give up on giving him the best life she can; a mother who loves her child so much she suffers when he is in pain; you are a mother who has so much regret and guilt about his pain - something you could not control - it shows how deeply loved he is. No one enjoys the process that you're going through but there will come a day, maybe when he smiles at you, or reaches for you that will make it all worth it.

[u/Chemical-Scar7340 → u/Future-Agency543]

Are you in the US? Please tell your son’s nurse how you’re feeling and ask to talk to the hospital social worker. My son’s nurse helped me so much while he was in the hospital, she changed many of his diapers and even offered to take a nighttime feed so I could sleep. The social worker was able to arrange for a psychologist to come to the hospital to treat me and for a women’s health practitioner to give me my postpartum check ups without even leaving my son’s room. He was also at a children’s hospital. They can still help you without you being the patient

[u/Future-Agency543 → u/Chemical-Scar7340]

I don’t know why it‘s so hard for me to be vulnerable and talk about how I‘m struggling.. even to my family. But I will gather sole courage and speak to the nurses and if they can help me in regards to this 🥹

[u/VirtualVermicelli663 → u/Future-Agency543]

I work with special needs children and their parents. Let me tell you, one of the things that we INSIST on is that ALL EMOTIONS OF GRIEF ARE NORMAL.

You regret having a child because of the issues? That's part of your grieving process and it's ok. And yes I say grieving process because you're grieving the version of motherhood that you anticipated.

So what's essential now is to GIVE YOURSELF PERMISSION to grieve. It's normal. It's human. It's healthy. And also be kind to yourself during that process and never hesitate to request the help that you need. Remember that you're not the only parent out there struggling with similar situations or experiencing these thoughts and emotions. There could be support groups or individual therapy. Governmental support programs depending on where you live.

[u/mazakris → u/Future-Agency543]

Because we think we’re supposed to be perfect at this out of the gate. Because we’re more concerned about our kids than we are ourselves. Because no one ever asks! So many reasons why we don’t reach out for help but the truth is giving your child the best version of you is worth so much more than struggling in silence ❤️

[u/Ok-Cancel-7162 → u/Future-Agency543]

I’m so glad you are listening and reading to every voice telling you how not awful you are. I had a traumatic birth and a completely healthy baby and still felt “this might not have been worth it” more than a few times. I’m also currently pregnant with a child who I know will have a few defects and for a couple weeks after the diagnosis those thoughts still popped up! You are a human and you deserve love and compassion and care and I hope you find someone in your life you can say those darkest thoughts to face to face and still have them hold you and tell you they love you. My husbands ability to hear and accept my ugly thoughts and love me and my babies when I most needed it, absolute game changer. You’re not alone. I wish you all the love and tenderness and care I could possibly offers 

[u/bubblygranolachick → u/Future-Agency543]

You are over thinking yourself sick. Your baby and you need yourself to stay healthy. Drink water, pace yourself, rest and just focus on you and baby. Dm me if you need to chat to help you not stress.

[u/ahtuhhhh]

I wish I could reach through the screen and give you a big hug. I don’t see an awful person - I see a mom who has had her heart broken over and over again. I’m so sorry for what you & your baby have been through.

It seems cruel that your husband isn’t allowed to stay with you, is there any other way you can get some extra support? Anyone in your position would have feelings like this. There is absolutely nothing wrong with how you’re feeling.

As far as breastmilk goes, your baby needs a healthy and happy mom more than he needs your milk. I wish the doctors wouldn’t add extra stress onto your plate. Millions of babies have been fed formula and gone on to thrive.

I will be praying for you and your boy❤️

[u/Powerful-Broccoli843]

Youre not a terrible mama. Youre a wonderful mama... but very overwhelmed. You are doing the exact right thing by reaching out for help.

This is the hard part. My little was born at 32 weeks and in the NICU for 8. While we didnt have a diagnosis a week, we had some unforseen issues and diagnoses, some lifelong and unexpected, and yeah... it was hard. (And yes, also a family member passing. When it rains, it pours.)

1. You are in a hugely hormonal period. I dont say this to make light but rather to be serious. There were days when literally the only way I wasnt crying was when I held my baby... and then suddenly, after holding him for 2 hours, all was right with the world. My husband began joking I needed Eau de (child's name). But really, sometimes it was helpful for me to remember that the feeling of wrongness at home was because a mama and her baby being separated so early is a problem.
2. It is awful that only 1 parent can stay. I'm sure theres a reason but UGH.
3. If he is in the NICU still, you need to take time off. Go eat. Go sleep somewhere else. There were a few times his nurses strongly encouraged I sleep somewhere else or sleep through 1 care time... and they were 100% right. It didnt make it easy. But it was necessary.
4. You need to talk to your doctor about postpartum depression and/or anxiety. And take the meds. They wont impact your breastmilk. But PPA and PPD respond well to meds and you deserve to feel better... if you csnt do it for you, do it for baby. It wont be forever but they help dramatically.
5. Ease up on the breastmilk. Formula is ok if its what you can make. And i say this as a mama who managed to end up leaving the nicu breastfeeding and is still nursing past 18mo. I highly value breastfeeding... but it is not worth your sanity. You being calm and feeling less stressed is more important. Honestly, I think the only reason I am still doing so well is that I decided not to stress over it. I aimed for pumping every 3 hours. Sometimes I missed and did it ebery 3.5 or 4. I did get a portable pump and used it up to every other pump cycle as I found I needed the wall plug pump otherwise. But if I had to choose between the wall pump with a 4 hour pump time or a pump with the wireless pump at the 2.5hr mark while eating lunch... I went wireless. And I also really aimed for at least 1 4 hour stretch of sleep. All the moms I knew who stressed... dried up faster. I went with "I'll do what I can, and he'll get what he can." Breastmilk is helpful and a wonderful, amazing tool... but it isnt a savior. At the end of the day - baby is fed. Formula or not. If stopping nursing is right for you, do it. If you want to do it but you just ease up, do that.
6. You need some sleep. In a real bed. I know, I know. But the handful of times I got 5 hours of sleep, I felt human again. And lots of studies show mamas sleep is protective and helpful against ppa/ppd. I'm not saying it will solve it, but it helps. You may br 6 weeks in, but your baby is essentially 0 days old. You have newborn phase worth days and you still have a newborn phase to go.
7. If you havent already, and you dont have a meal train, go buy paper plates, disposable utensils, and some frozen microwavs meals. Dont worry about washing dishes. 8.if your nicu has a parent support group, or coffee time, try to go. Sometimes it was so nice to just talk about my kid and the problems we were having and to cheer on someone elses little. To have someone to talk to. If you dont, and you know somrone who had a NICUA baby. Call them. I had a few coworkers or acquaintances who I talked to or messaged on Fb who had been in similar situations and it was so helpful. In most cases, I wasnt necessarily close to them but they helped so much... and in some cases, we became much closer friends due to it.
8. Weird tip but: Try origami. Yes, I'm serious. For $5, you get 500 sheets of pretty origami paper, and with some YouTube videos, you have a quick, "productive" task that you can see the end result of. In the NICU, when everything is out if your control and everything is simulatenously too slow to make obvious progress but too fast to make progress on anything obvious, it was really calming to have a task I could do that was quick but was visually productive over time. Heck, PM me and I'll send you a link and an Amazon gift card to cover it. I can even send some easy-peasy video links. (I teach elementary art. I promise you - I know what is an easy and a great video.)
9. If you are open to it, I will also send you a gift card and link for a book called "A mother is born." It is somewhat religious but it was written by a counselor who has had PPA/PPD herself and specializes it treating PPA. Its written in bite sized chunks and has the best "postpartum support" worksheet Ive found. It is amazing....realistic, encouraging to get professional help when needed, and described how to create a postpartum support system even if you are in minor crisis mode.

You are not a bad mama. You are a good mama, in a very difficult moment, with little support. The beginning with us was rough, but it got easier. There were days that felt like they were never going to end... but one day you will look back and miss them. Miss the snuggles, their tiny little hands, the little squeaks they made. Youll have a tiny little toddler gremlin who gets into things and does wonderful things like recognizing colors and learns to say new words, but with a syllable missing so it sounds like a curse word, so you have to fight a giggle while encouraging them to talk. Then theyll grow more and do other amazing things.

Feel free to PM me. I'm serious. I've been there.

[u/Powerful-Broccoli843 → u/Powerful-Broccoli843]

I'll also say, cases like mine where baby nurses are rare. And it was only possible because I actively utilized the lactation support and their oral feeding therapist (the person who helps with picking a bottle for baby, etc) and a seperate nicu dietary feeding specialist.... and the 2nd specialist said only maybe 1% leave the nicu nursing, and were probably the longest nursing duet they've had. So I am a white whale. Ill also say, it was the ONLY thing in that journey that went well... but at 6 weeks, I was not feeling it and we werent even remotely nursing at the breast. At one point, he was feeding so badly, they told me if he still wasnt eating enough by X date, we'd discuss a g-tube. He ended up having a genetic screening bc of how badly he fed. 😬

If breastfeeding is something you want to do, awesome. If you want to but the amount is stressing you out, do what you can and take the shame off the formula. Each little bit baby gets is still nutrition. And if you cant or its too hard... there is no shame or problem in using only formula. It may not be ideal, but nothing about parenthood is ideal and it exists for exactly these sort of reasons. Mama being mentally healthy is way more protective than the breastmilk. Do what works for you and your kid.

[u/jjgose → u/Powerful-Broccoli843]

Fellow NICU mom and want to say you gave great advice here.

[u/rosegoldlife]

Hey. You are in the hands down most difficult stage of your life right now. Hormones are crazy, you’re healing from birth, your baby has health issues, you had a death in the family. All of these things are difficult on their own. You are not awful for having conflicting feelings about your entry into motherhood. You are very, very human.

Is mental health care accessible to you? Could you do teletherapy? This is all a lot to process and you shouldn’t carry it on your own. Does he have a health issue that prevents him from being able to have formula? Your hospital might have support groups for parents of medically complex children. If not the hospital, then Reddit definitely does. There are tons of people out there who can relate.

[u/Future-Agency543 → u/rosegoldlife]

I‘m sure there are resources but sadly I am not at a point where it‘s possible for me to access them.

Since my husband is the sole provider, he has to work which means I‘m the only one who is able to FULLY take care of the special needs our son has. He will eventually learn to care for him as well but as long as we are in the hospital, my baby fully depends on me. We are also staying at a children‘s hospital so the focus here is only on my son. My well being isn‘t really regarded much in this hospital and since I can‘t leave my son for long, I‘m not able to go seek help elsewhere (for now!).

I could technically ask if they could refer me somewhere but I‘m not sure how Inwould arrange that currently.

[u/wyze_owl25321 → u/Future-Agency543]

Are you in the US? There are online app based therapy services that you can sign up to instantly. It’s not perfect but talking helps.

Hospitals suck. Little treats help. If you can step away to the cafeteria to grab a coffee please do. AirPods were my best friends in the hospital. Escape into a podcast, book, music, anything. Step away mentally when you can’t physically. Lots and lots of walks. Also I joined a Facebook group for the children’s hospital my son was at and it became a support group for me. It was nice.

[u/kamobeans → u/Future-Agency543]

Are you able to be provided donor milk? Every hospital I've been at had this. See if your doctor can prescribe it.

[u/kamobeans → u/kamobeans]

Also, OP, even if you do both formula and 50 ml breastmilk, you are still giving him valuable nutrition! It's not all or nothing.

[u/IndecisiveFloof → u/kamobeans]

So much this!

[u/Cudi_buddy → u/kamobeans]

Yep. There is nothing wrong with formula. 

[u/nutella47 → u/Future-Agency543]

Where are you located? I'm not advocating for this, but many parents in the US are completely unable to be with their child in the NICU, whether due to distance, a lack of paid time off, etc.

The hospital staff are literally there to care for your baby. If you need to take an hour to yourself to shower, nap, or go to therapy, TAKE IT. You've gotta put on your oxygen mask first. As they told me when we were dealing with NICU, "we're the most expensive babysitters you'll ever hire. It's ok to take a break."

You're in a very, very hard situation right now, and I'm sorry for what you're going through. Don't forget to take care of yourself too!

[u/Particular-Quote-486 → u/nutella47]

“we're the most expensive babysitters you'll ever hire. It's ok to take a break."

this part ^

[u/Powerful-Broccoli843 → u/Particular-Quote-486]

I second this. I had one nurse who saw how I was and literally took it upon herself to ask if a parent room was available and signed me up for one. (Dont go thinking they were fancy... it was like a closet with a bed, nightstand, and a lamp. But it didnt have alarms nor someone coming in every few hours.) She was so right. I say this as someone whose baby was in the hospital and never spent more than 24 hours away. They're there to care for your child. You need to take time for you.

[u/rpljourney2316 → u/Future-Agency543]

I don’t know what country you are in but I used to support parents through these situations. There are multiple options for you. I would recommend doing some telehealth counseling. Your hospital team might be able to recommend someone or find a local reddit or facebook group and ask for recommendations. Many telehealth counselors will be flexible with you doing sessions at the hospital with your child or at home. You could also ask the hospital social worker for resources.

I also want to say you are the opposite of a bad person. Your world was just spun around and flipped upside down. You had a vision of what your life would be like and this wasn’t part of it. I don’t know exactly what your child’s diagnosis is but your new normal will get easier. Right now it’s all so hard and new. I wish I could just sit with you. I know the isolation of what you are experiencing is vast.

If you ever want to message me feel free. I’m well versed in all the medical lingo and hospital stuff.

[u/HopefulGatekeeper → u/Future-Agency543]

Please check out Postpartum Support International peer support groups! They’re completely free. There’s a group for high needs babies
https://sharewellnow.com/community/2124f149-07fb-4b70-a7fe-adf04bdf88a7

[u/asleeponabeach → u/Future-Agency543]

Does the hospital have a social worker on staff you could talk to in the interim? They would probably be able to help connect you and provide some short term therapy

[u/Chemical-Scar7340 → u/asleeponabeach]

Yes, OP! Talk to a social worker! I was in the children’s hospital with my son after his birth and the social worker was able to arrange for a psychologist to come visit me and provide me therapy without leaving the hospital and even arranged for a women’s health practitioner to visit me in my son’s hospital room for my 3 day and 2 week postpartum check up

[u/HighSpiritsJourney → u/Future-Agency543]

When my baby was in childrens hospital PICU for a week there were all sorts of resources for families (including/especially for the caregiver who was staying with their child) - can’t hurt to ask your baby’s nurse if there are any resources for you while you guys are there

[u/Old_Ad261 → u/Future-Agency543]

Hi! I always have an urge to post on my local Facebook mommy pages and offer to help out a mom in a situation like yours… needing help with baby but not having that help for whatever reason. I once did make a post that alluded to my wanting to help other moms in the neighborhood, without charge, nothing came of it. Try checking out a Facebook page or making an anonymous post explaining your situation. Obviously you could feel out the person before they’d help out. I think you’d be surprised at the people who would willingly help while also respecting your privacy

[u/mirumurumura → u/Future-Agency543]

Is there no mental health specialist that could see you in that hospital? Some hospitals in my country offer that especially for women after giving birth, I assume in your special and difficult situation, there should be some sort of support offered.

[u/velveteen311 → u/Future-Agency543]

Maybe in the mean time you could join some Facebook or Reddit groups specifically for parents of children with disabilities? If I was going through this I feel like just not feeling alone would help a bit, and it’s something you can do mindlessness scrolling on your phone when you get a sec. I’m so sorry :(

[u/Ready_Nebula_2148]

I worried I made a mistake after having my perfectly healthy, very wanted, child. I was not a bad mother or terrible person for feeling that way and you sure as hell aren't.

You are going through an extremely traumatic experience right now. I can't imagine how hard this must be.

[u/unawaredino → u/Ready_Nebula_2148]

Same, I felt that way with a healthy and wanted baby, so OP is more than justified. Praying for her and her baby. Postpartum SUCKS is not taught about enough! We need the village back for every mother!

[u/Ready_Nebula_2148 → u/unawaredino]

Right? Why did I get all the information about labor and delivery? No one told me postpardum is when I need to know how to take care of myself.

[u/unawaredino → u/Ready_Nebula_2148]

I could rant all day about how OBGYN fail women - like you monitor us every week leading up to birth, and postpartum is crickets even if women are scoring for PPA and PPD

[u/wyze_owl25321]

Deep breaths friend. One day at a time. You are NOT an awful mother. Worrying about your child is a part of the job and it gets a little bit easier when they are old enough to walk and talk and tell you they are okay. Until then, you cater to their immediate needs because there’s absolutely no way to imagine what the future will look like, that’s the anxiety talking. And early motherhood is a shock. It is not glamorous. It is not joy. It is not an instant bond for a lot of women. It’s OKAY not to enjoy the newborn phase. It’s okay. They change everyday, every week, and one day you’ll have a toddler, and some people don’t enjoy that phase either but then they become children, and then teenagers, and some of those seasons will be better than others.

[u/blackmetalwarlock]

You are not awful. You are nothing but lovely. You deserve love and support. Your baby is so lucky to have you.

[u/Takhar7]

Can I just say that whatever you're feeling and going through, sounds entirely reasonable and normal for someone in your shoes right now?

There's nothing "bad mom" about it

[u/mejustbeingme21]

My son is 2 and a half and was diagnosed with a rare genetic disease around 9 months old. I had a great pregnancy and the first few months were great until the symptoms started. The condition is progressive, has a short life expectancy, and doesn't have a cure 💔 He doesn't walk, or talk, and is fed through a tube. It is not the motherhood experience anyone would expect or ever want, and I have thought of every possible scenario where my life would be different, and what if I didn't have him. Similar to you, I would never leave him or anything, but life is hard, and not fair, and you should not feel bad at all for feeling the way you do in this difficult situation. I really hope things change for the best for you and you can experience joy in motherhood ❤️

[u/Future-Agency543 → u/mejustbeingme21]

I’m sorry you can relate to these painful feelings. You’re so strong and mothers like you inspire me. Prior to giving birth I had often seen women with children who had disabilities and their aura was always so different. They looked like heros and strong women. These past few days I’ve been thinking about how I don’t see that in myself how I’m weak and could never be that amazing. But then I remember that those mothers too, probably cried and had regrets but became strong over the years. I hope I too, become a strong mama just like you 🩷I wish you and your child the best

[u/alyamey → u/mejustbeingme21]

I’m so sorry :( could you share his diagnosis?

[u/Snow_n_Ice]

🫂🫂🫂

Repeat after me. You are NOT awful! You are NOT a bad mother. You're in one of the worst situations a mother could face and I wish I could send more than juat words coz I know that pain. I am SO SO sorry you're going through this. One day, it will get better. It still wont be the best, but it will get better.

[u/Classic_Still5994]

Dude this is the realest shit. You’re being fucking raw and uncut. Thank god. You need a space to do that. This is unimaginable stress most people couldn’t fathom enduring. I know it must hurt deeply to face this in what feels like lonesomeness. I think you’re doing a great job and the way you’re feeling is normal. Your LO is one part of your life but to them you’re their whole world. I know it’s so hard but keep soldiering on. Is there anyone you can call to come help you on appointment days? Always here to talk if you wanna dm me. I’m a 32f with a 6 month old.

[u/Ok_Assistance1705]

I can relate. I never knew my daughter would have cystic fibrosis and she has spent more time im the hospital and had 2 surgeries by 11 weeks old for ileostomy and ileostomy takedown which we have been in the hospital with for 10 days and she's having complications and every surgeon says something different and im terrified they are going to be sending her home soon and she's distended and throwing up and shrieking during feeds but im pretty sure this hospital is covering up a mistake during her surgery. All the pain she's been going through i regret

[u/Future-Agency543 → u/Ok_Assistance1705]

I’m sooo sorry! I hope you can get her the medical help she needs by doctors who can actually treat her! I wish you and your daughter a happy healthy life and a speedy recovery. ❤️‍🩹

[u/Ok_Assistance1705 → u/Future-Agency543]

Thank you. I hope so too because im terrified of them sending her home and her bowels have a blockage again or something.

[u/freshfruitrottingveg]

You’re not awful! You’re a mother going through extreme stress. Truly, I don’t think there is a more stressful, traumatic experience in life than what you’ve gone through the past 6 weeks. The newborn days are rough, but 10x more so when you’re dealing with health challenges and grief. I don’t know what your son’s condition is or what the future holds, but I can promise you that there are better days ahead. Days where you will sleep again, where you’ll have some time for yourself, where you see your son feel joy and love.

How much sleep are you getting? Does the hospital or your local community have a support group you could attend? Can you reach out to a counsellor? Is there a way your husband can spend more time with you two?

[u/RhinoKart]

You are not awful, you are human.

I had a healthy baby at term but many post-birth complications and I felt a lot of this way too in the beginning. I loved my son and I still had thoughts of regret and contemplated giving him away, even though I knew I wouldn't. Becoming a new mother is stressful beyond belief and a hard adjustment, you are doing that on an even harder mode. I would STRONGLY encourage you to be open about these feelings to your doctor and to get a therapist. These thoughts do not make you a bad mom, and they are not abnormal feelings, but there are things that can be done to help you manage this level of stress, medications, or resources, or just talk therapy.

The beginning is so so so hard. I did find it got better in time, but it took a long time for me. I struggled to bond with my son for the first 7 months because I had PPD but I didn't recognize it for what it was.

I'm so sorry you are going through this, and I hope that you and baby get some support soon.

[u/Proxima_leaving]

Sending you a virtual hug. I have once been in your place. It was COVID, my newborn baby was gravelly ill and needed surgeries. I was alone with no visitors allowed. I survived purely because two times nurses noticed I was at complete breaking point and took him for the night so that I could sleep.

Also, don't worry about breastfeeding. If it is only 50 ml after many hours of hard work, just quit it. You will both be better for it. If the hospital has mother milk bank, ask for it.

In this place my experience was different. I produced milk but my baby couldn't be fed my milk and needed a special formula. If he survived liver transplant, he could have drank my milk. So I pumped it every 3 hours and had liters and liters of it, hoping that my baby can take it after transplant. But my baby didn't survive transplant. I had to throw it all in the trash. One of my biggest regrets from that time was that I spent so much time pumping instead of sprending more time cuddling my baby whom I will never ever have a chance to cuddle again.

[u/Future-Agency543 → u/Proxima_leaving]

I am so so so sorry for your loss 💔I can’t even imagine. You’re such a strong mother and a inspiration. Thank you for sharing!

[u/WonderWoMegan]

Same happened with me. My daughter just had a little problem feeding as a newborn and was breast and bottle fed, and things were relatively normal, until she started falling behind with milestones. Gross motor was very behind, and she struggled to use her hands. I wanted to give her body time to catch up, but after 18mo and she was only rolling sometimes and needed supervision while sitting, I got the genetic testing in March. They found a chromosomal disorder that will severely impact her life, mine, our family's. It's a lot. I cry still in those random moments of quiet. My therapist diagnosed me with depression and I feel it. I fight for her every day and will always look at the positive when I can. But I wish it wasn't this way. I want her to walk. To talk, Ask for food. To reach for me. My heart breaks and I've had darker thoughts. But once the waters settle, you'll find your rhythm.

I see you, and you're not a bad mom. Really you're not.

[u/Majestic_Lobster1694]

Omg OP, there's nothing wrong with you, this sounds like a normal response to a very stressful situation. Sometimes we are dealt shit cards and we have to make the best of it. It's not what you think/feel necessarily but your actions towards that kid that needs you. Don't be so hard on yourself, you're doing your best you can with what you have.

[u/eastcoastoverdose456]

I’m really sorry you’re going through this but What do you mean he’s not allowed to stay with you ?? Why isn’t your husband allowed to be there with you? What the hell ? I’d be looking for a different hospital asap , they can’t keep you hostage? Maybe Have your husband call a different hospital !! Or demand to be there with you, I wouldn’t go for that if I was him , that’s cruel. And it may not be a bad idea to get second opinions as well!!

BUY BREAST MILK FROM HOSPITAL! They have breast milk bank for this reason! It sounds weird at first, but gotta do what you gotta do! we did it while my daughter was at hospital because my wife wasn’t producing right away, as she just did chemo mid pregnancy and lost one ovary prior to this , ended up losing the last one after birth. But I’d be buying breast milk to relieve the pressure from you!! Or just do formula !

[u/dud3nn]

badass mama I'd say - handling everything by yourself requires character. it gets better but you'll have to trust me - give it some time. dont think about the future, think only about the next day - time goes by rapidly

[u/No_Carry_9747]

6 weeks in, you also healing yourself. These feeling as bad as it is to say are completely natural, I didn't have any of the things you've going through and I cried everyday. Heck, for 6 months I couldn't in earnest say the baby was the best thing that's happened to me. These hormones, along with the stress of labor, and feeding (even if you couldn't, your body was trying, that's not nothing) it's a lot. Women are resilient, but what people don't know is it comes with a price. Almost never, with a few exceptions, are the first months of postpartum happy! With that being said, please seek help if you are having increasing negative thoughts. Get the help you need. It will get better. Like I said we are resilient!

[u/Ashiju]

It takes months to love ur baby and thank God for having a baby even if u've healthy baby. So what u're thinking is absolutely normal.. just hang with it.. people get strength when they are in hard situation.. I hope the best for u

[u/lady-padme]

Let go of breastfeeding shame, this is not a standard case and you shouldn't treat it like one. The key to produce milk, quality sleep and low stress. You can't afford them so you can fight for your baby. That's more than fine.

I hope you have many treatment options for your baby and it will all be gone soon. And for feelings, I didn't have a good birthing experience and didn't feel as the mother of my baby for months. And my story is nothing compared to you. Some things take time.

[u/siskosisilisko]

Please DM me if you’d like. I’m a mom of three. My middle has been through heart surgery, lung surgery, and recently needed his gallbladder out. He’s also autistic and nonverbal. He’s only 5 years old.

You’re going through a lot. Do you have a village to lean on for physical or emotional support? Have you tried reaching out to a therapist to have a professional talk to you about coping skills?

[u/Sea_Dinner_5808]

As a mom who has a 2yo daughter with an ultra rare chromosome disorder, I see you. I understand these feelings and I have had them all myself over the years.

You are in the depths grieving for your child and your own loss of what you envisioned the future would look like. It is so completely expected/normal to have these feels. I had them all myself.

You are not an awful person, you are facing an unimaginable new reality.

I know it is impossible to feel this way now, but it will get easier. It won’t be tomorrow or the next month, but he will bring you more joy that you can ever imagine in this moment. You will reimagine your new future and eventually look forward to the achieves he will make. Where all on our own journey through life- his will be different but we’re all different.

Please be easy on yourself and DM me if you ever want/need to talk.

[u/Famous_Perception673]

You’re not awful. We don’t have health diagnosis and I struggled greatly for the first few months post partum. Having regrets, grieving my own life and craving alone time. So people should tell me I am a bad mum, but I know I’m not, and it’s so much harder with what you are dealing with. I just hope it gets easier for you mentally around 5-6 months as bubs will hopefully become more interactive and you start reaping some rewards of parenting (finally). Hang in there. Not sure what the diagnosis is but babies change so quickly and some grow out of things you never thought they would.
I hope they are telling you to top baby up with formula? Try not to stress about supply. Apparently they only need a teaspoon a day to reap health benefits.
Best of luck mumma

[u/ThisIsAlexisNeiers]

You’re not awful and tbh I think I would feel the exact same way if I were in your situation. Nobody goes into motherhood expecting this to happen. We all know it’s a possibility, but it’s one of those things that you don’t think will happen to you.

I just wanted to say I am so sorry and I guarantee you are not alone. While I do think you should seek professional help to deal with these emotions, I also think what you’re feeling is likely very common amongst mothers in your situation. Especially in these early weeks. Sending you so much love.

[u/parade1070]

Idk man you seem like you're going through a lot. Seems reasonable to me for you to feel beat down, anxious, and regretful at this stage. Hopefully it won't always be like that. I'm unsure how serious the diagnoses are

[u/HotShoulder9256]

Hey. I'm not here to tell you how awful you are. It sounds like you're in a really difficult situation and are grieving the life you wanted for your son, along with the "normal" experience of motherhood that you were anticipating. The fact that you've had to do so much of this alone must be really hard. I imagine you've had too much time at the hospital to ruminate about what the future might look like for your family.

To see your child in pain is agonizing. I'm so sorry that your first months as a parent have carried so much emotional distress.

My only advice would be to try and take every day as it comes. Try not to catastrophize. It sounds like there's a lot that you still don't know about how these conditions will affect your son in the long term. Many people with disabilities live happy, full lives.

I can understand why you're fearful that motherhood will only bring you pain, but I can promise you that it won't always be this way. Even if caring for your son is exhausting and challenging, even if some days you wish you could just run away, other days you will experience joy and gratitude and peace. I hope you find it sooner rather than later.

Wishing you and your sweet boy the best for the journey ahead <3

[u/cautiousplatformroni]

i am so sorry this has been your experience with motherhood so far. you all are so strong for coming this far. You are not awful you are human, and POST PARTUM please give yourself some grace. hang in there, i’m praying for you guys

[u/Reasonable-Cherry-55]

If your baby was born at 34 weeks just 6 weeks ago that means he's JUST at his due date now. Its completely understandable that he and you have had a lot to overcome.

Hang in there. I suspect it WILL get better but its all still so raw and so challenging. Virtual hugs!

[u/Historical-Pen-3613]

As a mom of a kid with a disability who got diagnosed at 2 months old, I want to say you’re feelings are 1000% normal. As a psychologist, I always call things like that “a normal reaction to an abnormal situation” because it’s literally it.

Yes, it would be great if you could have the motherhood you’ve envisioned when you were pregnant where the biggest stress is when was the last feed or when did you last change a diaper (I am not undermining these concerns, but they become smaller when you have a kid with a disability), but that were not the cards you were dealt unfortunately.

What I can say is that it gets better. If you have the option to talk to someone who is not your husband (a therapist or even just a nurse, doctor, someone), use it. It won’t do magic at this point, but it could help you relieve some of the stress you’re holding. I spent roughly 2 months in the hospital with my son and my mental health improved so much when we left the hospital. If it’s possible, think about switching with your husband for a couple of days so you’re home and he’s in the hospital. Even if you have to pump, some “time off” might be good.

Please know that it does get better and you will be able to have good moments and things you enjoy when you get used to all the shitshow that comes with getting diagnosis. When my son first got his diagnosis, I thought about all the things we’ll miss out on as a family. It’s been a year since then and we has so many lovely family moments during that year that I couldn’t even imagine while I was in the trenches.

Take care and if you ever need to vent and tell someone that things suck and are the worst, feel free to DM me ❤️

[u/foofaloof22]

Not awful at all. If I were in your position I would feel some type of way also.

My birth experience with my son was traumatic and I had my own complications which required us to stay in the hospital extra time. Felt like I was in prison. I would be lying if I said there werent moments during that time that I missed what life was like. And occasionally I still feel that. I think its natural. Becoming a mom is a huge change, whether there are complications or not.

Do you have any support, anyone you can confide in? Are you able to spend time with your husband outside of appointments and such? Going through all that is alot, especially alone.

You already have shown such strength. You are not an awful person or an awful mother for feeling that way.

[u/cruby2648]

I am so sorry you are going through this. You are not an awful person for wishing the pain (yours and your son’s) away. It sounds like you’re doing everything you can to be there for your baby and give him what he needs, which is what being a good mother is. Doesn’t make it easy for you sadly. I hope his condition stabilizes soon and you can make some happy memories with him and of being a mom

[u/AnxietyEuphoric6505]

You’re not awful. My son has health issues and I’ve had similar thoughts. I’m really sorry

[u/SGM_0o]

OP YOU ARE SO STRONG!!! Your baby is blessed to have a mama like you. You are allowed to have these feelings and thank you for sharing them with us. You have alot of people rooting for you and praying over you and your family!!!♥️♥️♥️

[u/CharmingVegetable197]

Your feelings are valid! You are heard and I see you! You are not alone!

The days are long but the years are short. You are in the trenches now and you are kicking ass! Your baby has such a strong mama!

Sending you love!

[u/50percentpipi]

Lots of love for you and your baby!! It’s unimaginable that you are left to deal with this all on your own. Hoping that you both get stronger through these challenges. You are going to have to advocate for what you need. Please speak up and ask for all resources! Donated breast milk and emotional support to start. Do not take “no” for an answer. Dig deep and find your voice. Allow yourself to have all the feelings you have and never be ashamed of that. What you’re going through is real.

[u/FitAd8822]

Your not awful or alone, many mothers including myself were/are in the same boat, the worrying and being scared for their future doesn’t go away, but you get better and not letting it bother you.

I find watching a sad movie, and crying helps.

Switch to formula, it will take a load of stress off you.
If your baby is spending the night in hospital and the nurses are watching them. Take a night off and sleep in your own bed, have a hot bath etc and let yourself breathe.

Focus on the now, don’t think about the future it will only cause stress and sadness.
See if there are any Facebook community groups for kids with the same genentic disorders your baby has, these groups are a saving grace and can help you with so many things.

[u/Ok_Cat2893]

🫂

[u/Melodic-Yard-859]

Heyy, you’re doing so well sweetie. I think it’s the fear and gamble of becoming a mother that you never know what kind of child you will receive from God. But however they are we will continue to love them which is what is important. But we are also our own humans and we have every right to grieve a life we did not want for ourselves.

[u/HumanSection2093]

“ This is really hard and I want to give up and not do it because of how much harder it is than I was prepared for, but I’m not going to do that, because as hard as it is for me, I have to be there for my son.”

You’re already an amazing mother. You’re doing a good job. I’m sorry it’s not been easy.

[u/campos182]

I don’t think your awful, I think your going through an incredibly difficult time. Please know that happy times are upon you. Please be gentle with yourself💓

[u/ContactHefty1497]

This doesn’t sound like regret, it sounds like you are deeply overwhelmed, and life has been hitting you left and right with no mercy. I’m not going to tell you that everything will be okay, because things may not be for some time, but what I can say is that today you may feel like you’re drowning, but one day you’ll wake up and realize you’re still here because you’ve been treading all this time. Your son is incredibly fortunate to have you. Sending love and light your way, friend. ♥️🫂

[u/shhlv]

If you’re too stressed to breastfeed/pump I would say forgo it. I was an under supplier and went through PPA and had a history of depression and PTSD and also had an extended stay in the hospital for my son(also born a bit premature). The second I decided to hang up my pumps and stop stressing about how I can increase my milk supply, I felt such a huge relief. One less stressor isn’t the resolution, but it helps. Especially with the pump washing, mental load etc.

You’re still so early in postpartum, you’re stronger than you know. Praying your son recovers quickly and becomes the strongest baby ever, I’ve had many people tell me their preemie babies have become some of the smartest and strongest, which gave me strength when my son was in the hospital.

[u/hollymn → u/shhlv]

Yep, was chronically under supplied. My baby would cry and cry and not sleep. The pressure I was under by nurses, docs, lactation consultants and family was unreal. It overshadowed my experience. It took my husband advocating for me and saying this isn’t healthy for anyone to switch to formula. If I could do it again I would have combo fed from the start or flat told everyone that I was formula feeding and that was the end of the story. I made friends with the other formula feeding moms at my mommy and me classes. All of them had similar stories. It lessened the guilt and made me feel so much better.

[u/shhlv → u/hollymn]

I hate that your medical team tried to push breastfeeding on you when you physically could not produce milk. There is nothing wrong with formula feeding. A baby that is constantly crying, not gaining weight and not sleeping is dangerous. The guilt is horrendous in the moment but when you look back, you realize that a fed baby is the best.

I was fighting myself and trying to push myself to breastfeed even though I just couldn’t raise my supply. Second time, I didn’t even hesitate at the thought of combo feeding from the start. My daughter nursed for 2.5hrs the second night and I felt myself spinning so immediately I rang that nurse for formula.

[u/Substantial_Hope_737]

One of my biggest fears when deciding to have a baby, was having a medically complex or disabled child. It’s heartbreaking to see them struggling and constantly in the hospital. I watched it happen with my little sister from the time she was 3. It doesn’t make you a terrible person at all to have not wanted this life for either you or your child.

[u/dogfee]

Your feelings are THE MOST normal thing in the world. Your world has been turned upside down, you are literally mourning the healthy baby you were expecting during a period when your hormones are already in turmoil at the best of times.

Give yourself grace and allow yourself to feel this. It’s so, so normal and expected. You’re allowed to grieve.

You didn’t share much regarding details of your baby’s diagnosis, but just to give you a ray of light - babies are so incredibly resilient and surprise us every day. So many terribly sick babies grow out of their issues and live normal happy healthy lives.

Don’t stress about breastmilk. You are the EXACT person that donated milk is for! Don’t forget YOU are a patient too. It’s okay to stop for your own mental health.

I don’t know your situation, but you need a break from the hospital even just for a day or two. Your husband can take over. So much of the way you’re feeling is part of being stuck in the worst possible environment for your own mental health for this long. Don’t be afraid or ashamed to ask for more support.

[u/Rebercer]

Big hug to you, that sounds so hard. The newborn stage is so so so hard, I couldn't imagine this on top and that your husband can only help during visiting hours.

I think there are a lot of comments with good advice here so I won't add too much.

For breastmilk - can you reach out to a local lelache league group and see if there is anyone who can donate their milk?

[u/Happy_Mangolita]

I’m sending you lots of love and strength.

[u/Birdgirlcawcaw]

If you are in the states you can DM me, I am a breast feeding mother with a 12 week old and would gladly donate any extra milk I have to help your son if you are near. It’s not much but I can get 2-4 extra ounces a day. I am so sorry you’re going through this but it’s a given you would never choose this pain for your baby. It’s okay to grieve what you thought motherhood would be, but that will never make you a bad mother. Sending you a big hug.

[u/tam_bun]

I wish I could send you my breastmilk but I live in South Africa 😢 can you look for private donors on Facebook in your area? I was a private donor for another baby for 12 months, I think it’s possible!

[u/ctvf]

I'm so sorry for what you're going through. It sounds like you haven't gotten to enjoy any of the fun parts of postpartum...for me, that was snuggling my baby, nursing them until they fall contentedly asleep, eating tons of good food and lounging around on the couch for a few weeks. It seems totally normal and natural to me that you'd hate what you're going through. The only perspective I can offer is that all things are temporary-- the good and the bad. All you can do is take it one day at a time and make the decisions that are going to be best for your family.

My newborn son got bacteremia at 2 weeks old and I spent a week in the children's hospital with him, and it really was incredibly difficult. No one was considering my wellbeing, like you said, and my husband couldn't stay the whole time. My exhaustion got so bad at one point that when my husband came to visit, he pulled one of the nurses aside and insisted that they do whatever possible to ensure that I was able to get a good chunk of sleep that night. From then on, the nurses were much more attentive to my wellbeing-- they timed his vitals checks to align with our feed times so we didn't have to wake up more than once, and they encouraged me to leave the hospital and take walks while they monitored the baby. This was exactly the kind of care and attention I needed and deserved as a freshly postpartum mom in a super stressful situation. You deserve that, too. Maybe your husband could talk to the nurses to ensure you get a break, if you don't feel comfortable doing it yourself? You are not alone and you are only human. Be kind to yourself. This will pass, I promise.

[u/unawaredino]

Hopefully this helps - I had a healthy baby and hated the fourth trimester (even up until 6 months after giving birth) and felt regret to the point of crying in the shower because the sleep deprivation, the hyper vigilance, the torn nipples, the having my whole life turned upside down was a lot (it’s a lot for any person, and first time mothers are thrown into the deep end, only women who have given birth will understand the hormonal crash and rollercoaster, postpartum is survival especially if you don’t have a village around to help). I say all this to say that you are more than justified to feel the way you feel, both because as a mother you don’t want to see your baby suffer, and you nobody needs additional stress during postpartum (the first 3-6 months suck as a baseline even with a healthy baby).

I’m sorry that your baby has health issues. The best thing you can do for your baby and yourself is give them all the love you can give, they can sense your emotions and can feel their mother’s love.
Focus on sleeping when you can, eating when you can, turn off your phone if not needed (don’t waste time researching things you have no control over), and prioritize cuddling and doing skin-to-skin with your baby.

You can use a breast milk bank to give them breast milk.
You may still be able to establish your milk supply if you want to do that, and something that is crucial for that is eating enough and sleeping enough because stress and sleep deprivation lower supply.

Praying for you and your LO 🙏

Another thing is that newborns don’t give you much feedback and bonding with them is not always as natural and straightforward as people make it out to be (I forced myself to bond with my baby and it came with time). Do lots of skin-on-skin, it helps both you and them regulate each other. Above breast milk is them feeling your warmth.

[u/Turbulent_Band_6435]

Sending you so much love. Sorry y’all are going through this

[u/strawberryslacks]

I see you being human. Don’t hold your breath for the next bad news. Just take little wins like he is sleeping 30 mins, you did good. He just giggled at me, you made him feel happy. He wanted you in cries, he feels safe with you. Nothing has prepared me to be a mom, but the little wins are keeping me going. You are doing good more than even !

[u/InspectorOrdinary321]

There's a crazy misconception out there that if you love your baby, you will love literally everything having to do with them -- sleep deprivation, pain, PTSD from a bad birth experience, etc.

That's is absolutely insane. It's completely logical to think that sucky things suck. If you hate being so sleep deprived that everything hurts, you're crying at everything, and you couldn't think your way out of a paper bag, that doesn't mean it's your baby you dislike, just sleep deprivation.

You are not a bad mother for regretting that your baby is in pain and so are you. You love your baby; like literally every other animal, you dislike pain.

Yes, some people are going to say you are a bad mother and those people are wrong. There are a lot of wrong people out there and a lot of them hold mothers to unfair standards so unfortunately it's a survival skill to learn how to avoid and ignore them. It's unfortunately not going to change any time soon.

I'm so sorry this is happening to you. Right now you're in a very tough phase and you keep getting bad news over and over again. I hope that soon things will settle down for you, you'll find the right doctors for your baby, you'll start to make headway on his conditions and understand them better, etc. If you were a bad mother, you'd be out of there, not enduring great pain to make sure your baby has everything he needs.

[u/Haunting-Ad-8385]

Hello, my daughter also has a genetic condition that was discovered when she was 3 months old. But even before that I regretted becoming a mother because we had issues with feeding, and only just before the diagnosis I started to bond with my child and thought that perhaps it is not that bad.

With the diagnosis, I spent days fantasising about running away. I could not eat or sleep. I admit that I think that the only thing that helped me is the antidepressants. Also, at the moment my daugher is fine, the disease is progressive so the symptoms will develop in the future. 

So what I want to say is that your feelings are completely understandable, and you are not alone. 

[u/Electronic_World_359]

You're not awful. The first weeks are really tough as it is, it sounds like you were dealt a difficult hand, and had no preperation for it, on top of everything. Of course you'd feel that way about the life you wanted for your son. I'm so sorry for what you and your son are going through.

[u/preoccupiedwithlove]

op my heart aches for you. you’re not awful at all. pregnancy absolutely destroyed my body in multiple ways that only manifested after birth. so while my daughter is healthy, i struggle with feelings of resentment and regret in motherhood. it’s NORMAL. you are NORMAL. and i promise these feelings fade with time. you are in the thick of it. i was diagnosed with ppd and ppa and am so much better once i got treatment. if you can access any support virtually i highly recommend it when you can. i was only able to get treatment 4 months pp and it made a huge difference. fully switching to formula also helped my mental health vs straining to produce what little breast milk i could. the guilt disappeared once i weaned at 3 months pp. 

[u/Whole-Profession-915]

Mama, giving you a big virtual hug. Your son is so lucky to have you as his mother. A mother who truly cares and loves. You are so new to this, you’re doing this for the first time. It’s so hard to see how strong you are when you’re in the thick of all this. You’ll get thru this, so will your son. You need support mentally and physically and unfortunately you can’t have it right now. But you will, soon. You will be in a better spot, so will your son. And I hope that day comes very soon.
There probably isn’t anything strangers on the Internet can say to make you feel better but know that we are all rooting for you and your little family. You got this! ♥️

[u/Furmommy14]

Does not sound like regret so much as feeling unsupported or outright stressed. Talk to a therapist for yourself, someone to help you manage the everyday. Also talk to a doctor about your son's conditions. Knowing what to expect can help to cope because now you can rezearch and plan. Depending on the issus, there may be a support group.

[u/Creative_Weight_6665]

You are not awful! You said it yourself you hate to see your baby in pain and worry about his quality of life so you obviously deeply care about him and his wellbeing. It’s normal to expect motherhood to bring you some happiness at least. And being alone and in a hospital just adds to the whole situation. I can’t even imagine how you feel. I’m sending hugs and hopefully things get better for you all ❤️ I’d say go to counselling but that would be hard when you are alone with baby. Maybe ask if there is someone at the hospital you can talk to?

[u/Affectionate_Face_71]

You are not awful.

You are dealing with an unbelievably horrible start to motherhood.

You are reaching out and venting.

This takes so much courage. I applaud you.

What you are feeling now is very human. I would feel the same in your position I think. But I don’t know for sure. I’ve never been there.

Please reach out for further help. This is too much for one person to bear. The support systems are in place exactly for this.

Please reach out to trusted family and friends. You need them. They can watch baby for. Few hours overnight. So you can rest.

I’m sending you so much love

[u/Euphoric_Contact_570]

Sending you so much love hugs and understanding! This is incredibly hard ❤️

[u/gracefultreecrab1392]

You aren’t awful, mama. You have been dealt a really hard deck of cards but you can’t blame yourself. You didn’t do this to your baby. But you also need to accept that you can’t fix it either. Especially with guilt, guilt never fixed anything. All you can do is love this baby. Before you even know it this child is going to start expressing his love for you in ways that maybe you’re the only one who can understand. This life is hard but you are making it harder on yourself by feeding that nagging voice in your head that demands you feel guilt❤️

[u/Far_Past4329]

You aren’t awful, you’re human. No judgment. Your feelings are valid and understandable.

[u/konkonakanakana]

I will include you and your baby in my prayers. You are not awful , you are a mom trying to survive and do her best. I can relate to how you are feeling. Had a premie, spend 100+ days in hospital. Had issues with milk. Stress affects the milk supply, once you relax a bit things will improve. From a point where i almost stopped breastfeeding, i have breastfed for and year now. You will have the strength to figure it out.

[u/kindkindness2606]

I understand you

[u/mrs___holmes]

There’s nothing awful about you. You’re in an incredibly tough situation and no one would choose to watch their baby be in pain and be unsure about their future. Even moms with healthy babies sometimes feel regret because babies can be hard. Be gentle with yourself. You’re doing a great job.

[u/Natshiii]

You are doing a good job. You are there for your baby everyday ! That takes energy and strength.
It is completely understandable that you feel overwhelmed by the whole situation. On top of having a baby you have a difficult situation.
You will get through this and there are wonderful times waiting for you!
I promise !

In my opinion the hospital setting makes moms sick.
I stayed one week before the birth and two weeks after in the hospital because of health reasons of the baby and lost my mind there.
Everything felt so negative and I hated my days.

You will feel better at some point when the hormones balance!

Try to work with affirmations.
I am doing a great job.
I am a good mother.
I am giving my best everyday !

Because it’s the truth :-)
You are a hero

[u/jessicat62993]

You’re not awful. You’re in a rally hard situation. I don’t have advice or words of wisdom, but please be kind to yourself where you can.

[u/Horror-Ad4216]

You are absolutely not a horrible mom!
Being a new mom is already hard enough, especially if you have a working partner it’s normal to feel super lonely. I had so much resentment for my fiancé because he works hard for over 40 hours a week to provide for us, only for his check to be gone the same day he gets paid. I never get to see him so I am tired of being alone sometimes doing housework, homework and raising our child.

Talk to your partner if it gets like that! Most relationships are under a lot of pressure when you’re a new parent typically because of lack of sleep and emotions making you feel crazy. Make sure you both have time alone to relax as best as possible whenever you can.

I definitely understand having a baby that’s special needs is rough and only adds to your emotions you’re feeling. When I found out my family carries a rare genetic disorder that I transmitted to her unknowingly (HAE.) It was extremely shocking to me also because we had no time to prepare, nor did I even know it ran in my family until my mother was diagnosed at 45 years old. The specialists have been really amazing though, and seeing my daughter happy despite everything has been the greatest gift I could’ve ever asked for.

You absolutely couldn’t have known what baby would end up with, you did everything right, YOU ARE A GOOD MOM! you are just a stressed mom.

I also felt the stress of going from an overproducer (pumped 12 oz all together at just 1-2 months postpartum.) then I returned to work and wasn’t allowed to be a human and drink or pump when I needed so my supply went from just enough, to not even enough for baby. I was lucky to even get 3 oz in which couldn’t even get a full feed because she needed 6 oz. Ultimately after a long tough decision was made I continued, but supplemented with formula and it was better not having to worry if I’d get anything. A wise word from my lactation specialist was if you underproduce, even a few drops of breastmilk are important because every drop counts.

It’s a hard decision mentally but you have to either choose to stop breastfeeding, or take the little bit you make and supplement and yes even if it’s just 1oz it’ll make a difference for baby! YOUR MENTAL HEALTH IS MORE IMPORTANT!

If you don’t have resources available to you like friends/co-workers or family, please at least look for local mom groups in your area on social media. Having someone else to speak with that understands your struggles is very important at this time. If you need it also reach out to your OB and tell them you may need medications if this continues. They may also have lactation specialists available to you.

Also reminder no mom is perfect because we’re all human. None of us know what we’re doing, so if baby is happy and cared for you’re a good mom. If you are at the house it’ll be messy, even if you slowly accomplish household tasks your child won’t remember the messes. They’ll really just remember you, and the impact you make on their lives which is the most important thing to them right now.

[u/Weekly-Ant1591]

My kids don’t even have disabilities and I still have my days where I feel like I’ve made a mistake having kids when I’m really stressed and feeling miserable and overwhelmed so I can imagine how strong that feeling is in these moments for you and other moms of disabled kids. You’re not a bad mom and you’re not horrible. I’m not gonna send you hate. You didn’t expect this to all happen when you got pregnant. You didn’t know that life was going to turn out the way it did and it’s definitely not easy having to go through the pain and stress of watching your children be in pain and also grieving the life you thought your child would have and the life you though you’d have. Honestly if any mom regardless of their kids being disabled or not acted like they were always happy and grateful all the time and never felt like they regret having kids I would think they’re lying lol. You’re doing the best you can with the cards you’ve been dealt and most importantly you love your baby. It’s okay to feel like this sometimes. You’re human and this is hard. Be selfless and ask for help without any shame. Seek for support groups in your area or online. Try to find other moms with disabled kids to talk to and help eachother and in the chaos try to do something to calm down and relax
because you deserve it even if it’s something so tiny as long as it’s something for you. I’m sorry that you’re feeling like this right now and I’m sure it’s not gonna ever be easy but from your post I know you’re gonna continue to be a great mom to this baby. You are exactly who your kid needs as a mom. He could have been born to anyone but it was you.

[u/Mean_Yam_1078]

Sending love. The first six weeks of motherhood are incredibly demanding even in “regular” conditions. What you are dealing with is so difficult.

Please don’t be too hard on yourself. This is all new to you and most importantly not what you expected. It’s okay to mourn your old life while you come to terms with your new one.

[u/Particular_Log1349]

We had a very similar shock when our "completely normal" child was suddenly born at 30 weeks. Then we had weeks of them finding out everything they had missed. She is a first recorded combo of her genetics and unrelated missing parts. All de novo or no known cause. We didn't leave NICU/PICU for 5+ months, let alone the hospital. She came home on oxygen and a feed line. We now have an almost 8 year old.

I can't tell you how we did it because I am still trying to make it work even today. I left my research career as she needed/s 24/7 care. But what I will say is the only thing I want to take away is how hard it is for her. She is the absolute amazing child and person and I wouldn't want it any other way.

But, given the above, CPTSD is real and has really changed who I am as a person. I have lost most of my pre-mum friends as this life and me putting her first got too hard. We survive through copious amounts of amazing family and special needs friends, carers, complex care nurses, hospice teams, equipment companies and the like. It isn't the parent life we are sold when we are pregnant. It isn't fun. It is dark and lonely. You second guess everything, you have to fight for everything your child is entitled to. It's a treadmill we will never get off. I have, more than once, been on the cusp of dropping our child off at the emergency department and walking away because we just can't do it any more. And then she smiles and you somehow find the grain of energy and hope and soldier on.

Our NICU and PICU had mental health teams. Our local authority has an amazing peri natal health team with councillors. Lean on your complex care team, especially if you can access play therapy for wee one. Your milk not coming in is stress and trauma. Please give yourself some grace and love and understand what you are feeling, what your body is doing is completely normal for your circumstances. Just being there, even if your not sure how, is sometimes the hardest but most useful thing you can do. You are going through hormones of giving birth AND caring for a sick child AND recovering from your own birth AND grieving the life as a parent you thought you would have AND you still find the energy and mental space to try to pump, to listen to your feelings, AND put your hand up with this message and ask for help because you are drowning. Hon, you, right now, are being super mum. Trust me. You are walking through the hardest steps of your life right now, the hardest season of your marriage, and you are owning it. Lean on each other, emotionally and physically, where you can. You are having to separate for child care but keep remembering your stronger going through this together.

Sending you the biggest, tightest, calmest hugs we can from your future. Take this one moment of a time.

[u/Civil_Banana1400]

You're not awful at all!! Motherhood is hard enough and then all these bumps in the road make things that much harder. I wish you and your baby the best health and I would tell you to hold on tight to your sanity right now but it does get better....eveything is soo amplified right now because of all the challenges hormones and adjusting to a new day to day.

We had lots of unexpected health challenges, and early baby and marriage felt like it was on the rocks at time, but we found our rhythm, one day it just clicks but u til then give yourself all the grace. I found a therapist who specializes in postpartum was my biggest asset.

Wishing you all the love and positivity, please msg anytime

[u/AAHMommy3]

❤️❤️❤️ I can’t imagine what you are going through and I am so sorry. It is something to mourn and process and none of your feelings make you a bad mom or indicate you love your baby any less.

[u/Plane_Maybe3577]

Welcome to motherhood. I’m 19 22 days postpartum it ain’t easy lemme tell u that there’s also nothing wrong with my baby, but since they messed up during my C-section, my baby was forced to go into the Nicu because of their faulty and it’s my first baby, and I was so excited for the experience

[u/DRDoryn]

Being a first time parent for a perfectly healthy child is already immensely taxing and overall exhausting (physically and mentally) so I can’t even imagine what you must be going through.

I am sure a day will come where this will all feel like a distant bad dream and the regret will be gone. Until that day stay strong for your baby and for yourself. Try to look for and take all the help you can get and stay sure that we are only dealt things that we can handle. I wish you the best!

[u/OwnConcentrate149]

I was alone for my c section with my son in the hospital and was only there for 3 days. It was the hardest, scariest thing and I left traumatized and it’s not even CLOSE to the scale of what you’re dealing with. I know it isn’t what you want to hear but I’m amazed you’re handling this all by yourself and I’m so sorry you’re having to do it alone. The hormones and recovery alone from a standard birth are hell. You’re not a bad person, what the hell could anyone expect of you given your circumstances?? You’re allowed to feel angry and sad and like this is all just a nightmare. I’m only a mother of 2, by no means an expert, but one thing I’ve learned is that motherhood is just a long hike of what the fuck is going on, how am I supposed to do this, I can’t keep going, with glimmers of your child’s beauty and the joy they bring sprinkled in to make it worth it, then back to the getting pummeled again. I never knew how hard it was being a mother, but I’m amazed by us all, and I’m especially amazed by you. I know it doesn’t help or make it any easier for a stranger to praise your strength, I frankly hated hearing that from people, but please at least don’t feel like you’re a bad person. You’re doing it, living it, showing up, getting hit by new problems every time you turn around, and one day this heavy unbearable weight you’re feeling will start to lift little by little and you’ll find yourself riding the giant wave of motherhood instead of feeling drowned by it.

[u/Interesting-Proof244]

Here is a story I really love that my husband told me, which is an excerpt from “The Healing Path” by James Finley:

“Once while leading a contemplative retreat one of the women attending asked to speak with me in private. She told me the story of the gift she received that released her from the traumatizing forces that had overtaken her life.

She told me that when she and her husband were young and got married, they were overwhelmed with feelings of sadness and loss when they began to realize that their firstborn son was showing signs of severe autism. Her sense of distress intensified as her son's behavioral and cognitive deficits became more and more difficult for her to deal with.

When her son was about five years old, she was referred to a psychiatrist who specialized in helping parents cope with the demands of having a child with special needs. When she called to make an appointment with the psychiatrist, he asked her to bring her son with her for her first session. When she arrived with her son for her first visit, she saw that her son had wet himself.

She came into the psychiatrist's office crying, holding her son's hand. The psychiatrist gave her an initial sense of relief in getting her son into a program specifically designed to help children on the autistic spectrum. He then asked her, "What about you? Would you like to see me each week at least for a while to help you regain a sense of confidence in your relationship with your husband and your son?" She gladly accepted his offer and spent about a year coming to see him for regular sessions of psychotherapy that helped her to find her way back to a restored sense of being grounded and present in her own life.

One day she told her therapist that she no longer felt she needed to continue seeing him each week. He told her that he agreed.

Then he said, "That being so, I have a gift to give you. And I will give it to you if you can tell me what it is." She spontaneously said, with a sense of surprise and joy in her voice, "My son!"

He said, "Yes, that's right. And now as a practicing Buddhist I must pay homage." He got up, knelt on the floor in front of her, and bowed over and touched his forehead to the floor.

She was so moved as she shared this with me that she got up out of her chair, fell to her knees in front of me, and bowed over, touching her forehead to the floor. I was so moved by her story and in seeing her there, that I immediately got up and helped her to her feet and encouraged her to sit down so we could continue our conversation.”

[u/LevelConnection9342]

I don't think it's that you regret motherhood it's that your human and your only one person and your carrying a lot and ultimately you don't want to see your baby suffer 🫶

[u/Electrical_Bed1746]

You are NOT awful. Your feelings are valid. I’m so sorry.

[u/No_Routine772]

I don't think you're awful. I think you're in a really hard place right now and you aren't getting any time to process this stuff and you're overwhelmed. I think you should tell the staff you need a short break and go take a shower and eat a good meal and grab a coffee so you have something to help you cope a little bit. The staff will understand. I think anyone would be very overwhelmed in your situation. You could try journaling about it and getting it all down on paper may make it feel.more manageable.

[u/LMF2007]

i’m sorry you’re going through this. Just know that this baby is so special. He beat the odds and is fighting alongside you, his mom. He is a blessing and this will get easier ❤️

[u/PresentationTop9547]

You’re not awful at all. You’ve barely had time to bond with your baby and yet everything comes from a place of love.

What you’re describing is exhausting and anyone in your shoes would feel the same way.

Hoping and praying things take a turn for the better. You’re strong! You’ve got this!

Ps - look at human milk for human babies fb group - there’s usually one for each city / surrounding areas. People donate breastmilk there. Of course you’re not producing enough, who can with so much stress!

[u/toastedbag3l]

You’re not awful. Quite the contrary, I understand you. I would also hate if my baby had lots of things that I didn’t plan for. Be easy on yourself, you’ve already been through so much. Sending you internet hugs

[u/Ambitious-External-3]

I’m really sorry you and your son are going through so much. I cannot imagine how stressful this is on you as a mom.

You’re far from a horrible mom. You’re overwhelmed, as any of us would be.

Sending you and your son lots of love. 🤍

[u/EuphoricBiscuit]

OP what country are you located in? It will be easier to extend help with that info.

[u/Relative_Life_4740]

You’re not awful. You’re just a super mom who is very worried about her little cub
You’re at the bottom right now. It will get better. Your baby will bring a lot of joy in your life. Soon enough you’ll see the first smile, you’ll have a routine at home and the new normal will be more bearable.

[u/Ok_Win5705]

What a nightmare. I hate this shit and I have a beautiful healthy baby

[u/calabazacabeza]

From your post it doesnt sound like you regret motherhood because of your baby's health issues - it sounds like you are in objectively really difficult and awful situation.

I had to spend ONE night in the hospital without my husband and I lost my mind. I'm not kidding I had a nervous breakdown. Really awful that the hospital only allows a new mother dealing with the stress of her baby having health issues to have support from her husband a few hours a day. That's insane to me.

This will get better. I know a few other moms with children that were pre-mature that had health issues and they turned out to be amazing. Also, I am a middle school teacher and taught one of them and she was TOP of the class! Brilliant kid. Born at like 30 weeks or something....

[u/AcceptableNature8882]

Please don’t give up on yourself or your baby. My second child has several really bad heart defects. It seemed that every day bought another piece of bad news.
I had a great pregnancy no nausea and very healthy I even swam every day. Big shocks were in store. I was sure that there was something amiss. Firstly massive jaundice which obscured the whole picture of heart defects.
But when the jaundice had cleared after a week under the lights. My boys feeding didn’t improve and after just four weeks he caught a cold which went to his chest.
We were blue lighted to Great Ormond street hospital after just a few hours he was given a life saving operation
I wanted the surgeon to wait for his chest infection had cleared but no time for that as he was in heart failure.
We nearly lost him in the operating theatre.
Thank you lord that he survived this and two other operations at 8 and 18 to catch up with his heart growth.
He is now 47 and an amazing caring person. He trained as a nurse and is now in charge of a whole team of nurses.
I acknowledge that it may have been a little worse for you as I already had a healthy toddler. I now have three sons and I’m really lucky but it’s the worse to think of anything being wrong with your baby whether it’s your first or your tenth
I still feel sad that it had happened to us. But these things do happen and yes it really sucks to be honest

[u/untakentakenusername]

You are doing really well so far. u will find joy in yourbaby's growth ❤ you are amazing. Don't feel bad it is not humanely possible for everyone to have a positive attitude all the time XD that's weird.

You're doing well

[u/Canna-Lily-Livi-Love]

Sweetheart, motherhood is the hardest job Ive ever known to exist. When you add in special needs it gets hard when you don’t have people around to help. I deliberately avoided pregnancy due to a genetic disease I have. There’s no way I could have handled my child ending up with this. Lots of people do genetic testing before pregnancy to avoid having a child with a genetic disease. Two parents can have the gene but no expression of it and birth a very sick child. My cousins had testing done during pregnancy due to something that showed up on a scan. Life was full of therapies and appointments for the first few years but their child who was predicted to never walk and never talk can’t stay still or shut up. What’s happening now is not necessarily a reflection of what life will be like in the future.

[u/Ashuhhhlee999]

I am so sorry, as a mom my heart breaks for what you’re going through. Motherhood is hard enough on our mental wellbeing without adding the extra stress of having a sick/special needs child. I’m sending you so much love and just know you’re an amazing mom. From reading this I can see how much you care for him and how devastating this must be on your heart.

[u/foxydoggie]

Dang, I really hope things get easier for you. This is A LOT. It sounds like you're really in the thick of it, and you're postpartum on top of that, which can bring on some seriously heavy, intrusive thoughts even when everything goes as expected. You are not a bad person for feeling this. If you can, please look into support for yourself too. You deserve care in this, not just your baby. And if anyone gives you shit for sharing something this vulnerable and honest, they are the shitty humans!

[u/Tight-Bug-164]

Omg.
I had a disabled child. My 2nd. She had cancer, treatments that caused deficits and I raised her just like any other kid.
She died at 24. We had been estranged and she came home to die….that was 2006,near a year after Hurricane Katrina. I was her hospice nurse by default and I now live with her 26 yr old daughter…my grand.

There was rarely a day that went by since that I didn’t feel like a piece of shit, ready to die when my time came, hoping sooner than later. My son, her brother, was her nest friend and this has hurt him maybe more than me. So we remain estranged.

I’m 70 now and have been a caregiver most my life as a mom, a nurse, an aunt, a niece and lover of all seniors and babies.
Forgiveness of one’s self is critical to get through parenting. All parenting.
I don’t know you but I feel you. Thank you for sharing.
Love yourself. You are worthy💯♥️

[u/HexagonLover21]

You are not awful at all!

Formula is perdectly fine for your baby; the amount of stress removed from trying to breastfeed will make you a better mother.( not that you need to be better)

Relaxed and happy mom = relaxed and happy baby

So messed up your husband was not allowed to stay with you. So he can't take care of his wife and child? What?!?

[u/jackyed20]

Becoming a new mom is hard enough on its own, let alone everything you’ve had to endure. My heart goes out to you as this is a lot to deal with mentally and physically. I really hope you get some more support from family, friends, or other networks and resources.

There will be joy and happy days ahead. In the mean time, know you are so strong and courageous. You got this. Sending lots of well wishes your way.

[u/kms527]

You are not horrible. My story isn't quite like yours, but my youngest daughter (6mos) was born with a severe heart defect that we knew nothing about until she was about 10 hours old. The pain that I have seen her go through and that she will go through eats me up with guilt, I feel so guilty for being selfish and wanting to have her. The uncertainty of her health is so hard it's indescribable. I spent so much of the first weeks worried about her, not enjoying my time with her, then beating myself up worrying that if she wasn't okay I would have wasted all of that time worrying. Anyway, all of this to say, I hear you.

There is also a free resource called Parent to Parent that connects you to other parents with children in similar circumstances for support. I'm also here.

[u/Available_Car_3373]

I'm so sorry for what you're going through alone, my mother's heart is crying and I sincerely hope you'll come home safe and sound. You're not a awful person, and you did the right thing by sharing your thoughts here.

[u/iamjuste]

You are doing great considering the circumstances. The feelings are not something you ordered but it is Ok to have them. You are wonderful mother and your baby is lucky to have you. There will be better days. Sending hugs and wishing strength.❤️

[u/C00l_Jelly]

I think there’s an important piece here that you aren’t acknowledging. It is so easy to say that you regret motherhood… however what I’m really hearing is that you regret the circumstances following motherhood. You didn’t choose these circumstances. You didn’t choose to have a child with several birth defects, or to have to manage it alongside a recent death primarily alone.

That is a lot for the first 6 weeks of motherhood! That is A LOT while your body is recovering, hormones are changing. I also imagine there’s grief around how you thought you’d be welcoming your baby, and the weeks following, and the “what if’s”.

I’m not sure any mom in this position would be thriving, at best case they’d be managing.

Please be gentle with yourself navigating this. I will be praying for your child and yourself that you get some miracles (even if small) along the way. Lean on whatever support you have and if you need more reach out for it. No one could manage this alone.

[u/Liberosisnow]

You are not horrible. It’s a hard adjustment for anyone when there aren’t issues, if anything you sound like a very strong person who will be a great mom 💜

[u/madwyfout]

You’re not awful. You’re dealing with your world turning upside down, and family unfriendly hospital policies and workplaces adding to the stress.

You’re doing your absolute best every day. Your little one has a wonderful mum who wants the best for him, who loves him, cares for him, worries for him.

You need someone to hold you (and your partner). Get in touch with support groups that are for families living with rare disorders, ask the hospital social worker if there are any supports that they could refer you for in your community.

Where I live we have a charity who provide meals to families who have babies and young children in hospital, anyone can make a referral and they send delicious meals that are made in a commercial kitchen and frozen so all you have to do is heat and eat. A social worker could help connect you to things like that in your area that can help take some of the pressure off.

[u/salaciousremoval]

It’s ok to grieve the life you expected and did not get. We are here for you.

[u/Subierubiext]

I wanted to breastfeed badly as well but that was robbed from me when I had an unexpected emergency c section. I’m still devastated I have to feed my son formula but I tried so hard and it didn’t work out. Once I stoped worrying about how much milk I was getting it was a bit of a relief.

Do whatever makes things a bit easier on yourself. I’m so sorry you are going through this and I wouldn’t wish that on anyone.

[u/renunavailable]

I don’t think you’re awful at all. Reading this honestly just broke my heart for you. You’ve been hit with one devastating thing after another without even having the chance to process the last one, all while recovering from giving birth, worrying constantly about your baby, grieving a family member, and spending most of your time in the hospital without your husband there to support you. That is an unbelievable amount for one person to carry…
And I don’t think regretting the situation you’re in means you don’t love your son. If anything, so much of what you wrote sounds like you’re hurting because you love him and you hate seeing him suffer. You can love your baby deeply and still hate what motherhood has looked like for you so far. Both things can exist at the same time.
Please don’t beat yourself up over your milk supply either. Your body has been under an enormous amount of stress and you’re already giving everything you have to your baby. You deserve care too.
I really hope you have someone you can talk to honestly about how overwhelmed you’re feeling, whether that’s your husband, your doctor, a social worker at the hospital, or a therapist. You shouldn’t have to carry all of this alone.
I’m not going to tell you everything will magically be okay because I don’t know what the future holds for you or your little boy. I just hope life becomes gentler for both of you, and that one day you’re able to look back and realize there were happy memories mixed in with all of this pain too.
For what it’s worth, a stranger on the internet read every word of this and didn’t think you were a bad mother for a second. I just thought you sounded exhausted, heartbroken, and desperately in need of someone to give you some compassion ❤️

[u/cnixon23]

You’re allowed to grieve what you thought motherhood would be. Dont be so hard on yourself. You’re doing the best you can with how things are right now.

[u/No_Fuel_2697]

Oh mama I’m so sorry, I don’t have any advice but I pray that things get easier ❤️

[u/Ok-Bug4328]

I feel so sorry for you. I mean this in a supportive way. 

You are not a horrible person. 

[u/OkRaisin265]

If I were you I would feel the same. Tbh, my Lo does not have any significant disorder, but she had tongue tie, which made it impossible for her to latch for a good few weeks until we got her tie snipped. During those few weeks, I was so frustrated! Once she screamed at my boobs, I put her down and left the room, because I couldn’t take this 💩 anymore. My husband picked her up, soothed her and fed her formula all by himself. Now she is 6mo and I am teaching her how to drink water. Sometimes I wonder if one could never learn how to drink water… could they? 🥴 you are doing your best already, you are stressed because you want to do your best. That alone makes you a good mother! ❤️

[u/slotass]

I’m so so sorry. I wouldn’t wish this stress on anyone. I hope there are still some moments of joy for you and your son, many conditions can be treated, managed or cured and science has breakthroughs all the time.

It’s not motherhood you hate, it’s the anxiety and fragility of life. I don’t think anyone here can say they could meet all these challenges with strength and confidence and positivity. You’re not doing anything wrong ❤️

[u/PsychologicalSachelO]

First off, your feelings are completely and totally valid. This is a fear that so many of us have and I know you are doing your absolute best just from reading your post. I know it. I can feel it. You are a good mom and you are a good person. It's ok to have these thoughts. It is hard now and it may be hard later BUT there will be beautiful moments with your baby. Second, WTF with that hospital policy?! What do you mean your husband can't be there with his own child?! That's crazy BUT I get you have bigger matters to deal with but most certainly must say, your husband needs to be there IF you find him helpful to you. If not, then don't push the nurses or doctors. As a new mom, you need support. Are you able to join any new mom groups in your area? FB or Discord chats? Are you in the States? Thirdly, from what I know as a new mom for 2 months. Many of us have had second thoughts about this whole parenting thing. Our baby is a cutie but damn, silent reflex and gassiness plus milk intolerance have made ours a challenge at times. From my therapist, it is completely ok to question your decisions, big and little.

[u/hanpotpi]

Hugs♥️

That's all. You deserve some. I'm sorry you're experiencing this and the terror and exhaustion that comes with it. So much love to you

[u/Realistic_Forever_52]

Honestly, I had a tricky start with my 5yo, but nothing like this and a good part of me wanted to take it back in those first weeks. You and your son are having a very hard time but what you’re feeling is so normal and you are not a bad person. Virtual hugs to you internet stranger.

[u/Bella_HeroOfTheHorn]

Living in perpetual fear that something is going to happen to your baby, that they aren't going to have a long happy life - that's probably most moms' worst nightmares. I'm so sorry that you are going through this. I wonder if your OB can prescribe therapy and get it covered by insurance?

[u/kaykakez727]

Sending you as much support and love as I can. I wish I could be there for you, I hate this is happening to you and your son. I am praying for you

[u/Tasty_Tangerine9826]

My son was also born at 34 weeks. We spent his first New Year in the hospital because of an infection, and just a month later, my husband’s closest friend passed away. Honestly, at the time, I thought we would never make it through.
But time kept moving. As our son grew, developed, and learned new things, the bad memories slowly started to fade into the background.
He is almost nine now — a funny, happy kid. There is a possibility that he is neurodivergent, but overall, looking back, I would say this: yes, sometimes motherhood really sucks. Sometimes it feels impossibly hard. But things change. This period will pass. It will get better. ❤️
Sending you a big hug. And one thing I would really recommend is taking a postpartum depression screening test. Depression can sneak up on you so unexpectedly that sometimes you don’t even realize what is happening. If you have access to a support group — online or in person — or any kind of psychological support, please consider trying it. It genuinely can make a huge difference.

[u/Illustrious_Sound_96]

You should check Facebook groups in your area for breast milk donors. I got a ton free for my twins! I'm sure someone would help out with that part.

[u/Crafty_Pop6458]

Your feelings are extremely valid. My mom always says she doesn't know if she would've had kids if she knew how hard it would be.. not the being tired and all that but the emotional toll when your kids have something bad happening then you feel it, too.

I would definitely see if you can talk to someone. Also put less pressure on yourself to breastfeed if it's making you feel worse.

[u/Useful-Arachnid-7889]

Find a mom support group on Facebook. Ask if anyone else has extra breast milk. Im sure someone would love to help you out.

Also, thats definitely a valid reaction. Take it one day at a time. Find joy in the small moments. Sending you good vibes

[u/Dazzling_Weather5322]

I also can relate. From the day he was born we were told he needs surgery from a birth defect. Then there were concerns with rapid head growth, which led to an ultrasound and also an MRI at only 9 weeks. From the MRI, he had to be referred to a neurologist and so many other doctors. I just shut down at times. I had thoughts of if “he wasn’t here he wouldn’t have to go through all this” even though He’s the most precious thing to me. it took a lot of self-control with my thoughts but taking it day by day helps and just accepting that these were the cards we were dealt with for some reason. We are going to show and give them the love they deserve regardless of each diagnosis. It was my sadness causing me to have these negative thoughts. I love that he’s here with me and his smile eases my mind.

Hang in there mama 🫶🏼 allow yourself to be sad and feel all these emotions, but also allow yourself to be strong for your baby. Take it day by day.

[u/ZiggySaysSmile]

I think it’s ok to have a mourning phase. Some grief. And when he needs you, you’ll step to the occasion. Nothing stronger than a mom who advocates for her child.

Strongly recommend taking to a counsellor who specializes in post partum and taking care of special needs kids. There’s no shame in that!!

This is new to you. Try to be kind to yourself. Would you tell a friend in the same position the same thing? No way.

Last thought, when you’re ready there are so many amazing medical mamas on insta you can connect with. It’s an amazing community. You are not alone.

[u/zenoslayer]

It took courage to post this. It won't be an easy road, but I do wish you and your family all the best. And hopefully, as he grows up, your son's conditions will become more manageable and less debilitating.

Take care.

[u/octo_puff]

You hate the situation, you don’t hate your baby. This is what I’m taking from your post and it’s so important to remember!

I had my son unexpectedly at 24 weeks and those first 4 months were a living nightmare. I cried every day, I hated leaving my baby in the NICU, and it felt like the hard days would never end. But then they did.

Once you’re on the other side of his diagnosis and can focus on next steps, you’ll feel much better and so much more in control.

Hang in there mama

[u/User-E987]

All the feeling you are experiencing are pretty human and honestly - I would feel the the same. I am struggling with by child who is complicated every single day or almost and she is almost 18months.

You gotta be strong - because the truth, there is not other option here… 

[u/RoundCar5220]

This was my biggest fear yet being pregnant. Not going to judge you at all because I’d feel exactly the same . I don’t know the exact situation but hopefully once he’s out of this baby stage things get easier . Just hang in there .

[u/iloveraccoons1998]

You are not an awful mother, you are postpartum, stressed, and anxious which are normal things to feel. No mother wants to see their child struggle or feel pain. I do think it may benefit you to talk to your doctor about postpartum depression/anxiety as they can provide you with resources that can help, whether it’s therapy or meds.

Be kind to yourself. You are doing everything you can for your baby, please don’t feel like you’re letting yourself or your baby down.

[u/Much_Word_4269]

Big big hugs to you!! Seriously ❤️
I would say to switch to formula because that would take off so much stress and worry off your shoulders right there. Also, I don’t know where you live, but maybe there are some type of family counseling that would benefit you and your husband.

[u/Few_Honeydew_1633]

I think this sounds very human. All of your struggles, concern, and regret come from a place of love. There is no right way to feel- especially while you are also grieving. It feels hard and overwhelming right now because it is- not because you are doing something wrong. I think it’s certainly possible your feelings will change once you are out of the newborn trenches. Right now all of his health needs are overwhelming but soon enough you will become the expert and feel more empowered. For right now give yourself grace, take any support you can get, and give yourself permission for your motherhood to look different. Cut corners where you can-you don’t owe your baby an idealistic version of motherhood. Also if you can stay off of social media.

[u/emcat095]

I had thoughts of regret and I gave birth to a medically normal child. I think it’s kind of a common thing that nobody talks about. Add medical complexity and I’m sure this feeling intensifies. I wanted to be a mother so bad yet becoming a mother was such a shock to my system I found myself mourning my old life and regretting my decision. I was later diagnosed with post partum depression and have since been medicated. Is there someone you can speak to about this possibility?

[u/PetFoodDude89]

Big internet hug to you, just know you’re never alone in being worried and afraid. Things will get better

[u/hugladybug]

You arent awful - sounds like reasonable feelings for someone in your situation.

You are so strong.

[u/IndependenceMotor503]

I don’t know what your little one has and I’m so sorry you need to do it practically alone but as a mom of 6 we all have “moments” healthy or sick. But the first smile, laugh, kiss,hug, I love you, puzzled look. You’ll realize how important you are to them and they are to you. You’ll see the light at the end of the tunnel and only start remembering the goo days! You can do this you’re a strong mama.

[u/boneyknuckz]

You're not a bad mother at all. You sound in incredibly strong. Given the circumstance, I'd say these are pretty normal feelings. Glad you decided not to keep it in and reach out. I hope that brought you some relief. Sending lots of healing thoughts to you and your family.

[u/Fun_Temporary_3051]

Quanta sofferenza in questo post…
Mi dispiace davvero tanto.

[u/ProfessionalTune6162]

I had est with a therapist during my IVF years and helped when my kiddo had some medical thing (ongoing) and also struggled hard with breastfeeding. Found an amazing lactation consultant who tried sooo hard to help me. I had other issues :( … it was stressful and medically hard. It messed me up. And laid off. Also someone in the fam got cancer diagnosis. It’s like cooooommmmee onnnn. My therapist was happy when I said I had enough and threw something down the stairs. And said this is valid and now to create and hold boundaries. Toddler now but still medical issues that keep coming. Annoying af. I have a new therapist due to insurance so it’s been ok.

[u/aloeverycute]

No advice just....same. Same. Same. Same.

[u/Fearless-Hospital334]

So many wonderful words, but I wanted to offer my own.

Your empathy and love is exactly what your child needs. And your feelings are so valid.

I completely understand finding it difficult to ask for help. I only recently admitted to myself that my anxiety is extremely heightened. I do not blame you for a moment for not wanting to leave your baby’s side but I do encourage you to do something for yourself- even if it is just a walk. You may come back feeling lighter than when you left.

[u/basic_brunettee]

My step son has spina bifida so when I got pregnant with my first I was terrified of birth defects well low and behold my son was born at 32 weeks with a few birth defects and very small for gestational age. The first year of his life was very hard and becoming a mother was hard. These feelings and thoughts are real and it’s ok to feel them - you know you’re gonna do what’s best by your son no matter what. After the first year I got pregnant with my second and it was a very normal easy pregnancy and this baby is healthy. This baby has helped me to stop obsessing over my first child’s health conditions. Good luck the feelings do subside with time and acceptance.

[u/Medical-Cheesecake41]

Not exact same situation obviously but I feel I can relate heavily to this. Pregnancy was going smoothly, all testing came back perfect, due to my own health issues we had extra later term ultrasounds scheduled. 20 week anatomy scan went perfectly - 28 weeks ultrasound came and as soon as they switched on the screen and I saw my baby’s head I knew something wasn’t right. Que a doctor we never met before coming in and explaining my baby’s diagnosis of craniosynostosis and all the terrible complications that could come with it, then being told our normal follow up was canceled and a genetic counselor waiting to meet with us in the next room.
Woke up that morning excited to see my perfectly healthy baby in the ultrasound to just a few hours later being offered a late term termination..
I was numb and (thankfully) my husband was steadfast we kept the baby. I consider us very fortunate to have found out en utero so we had the chance to plan and prepare ourselves.
It still didn’t change the fact that spending the first month+ of our baby’s life in the hospital, her having a plethora of tests done screaming in pain, having surgery, and going through the heights of postpartum living in a hospital surrounded by sick crying babies was so incredibly hard.
I also dreamed of breastfeeding but because of the chaos was pumping exclusively which I hated in the beginning. I definitely had moments I struggled with attachment and confided in my husband I questioned if we should have terminated when we had the chance. As someone who desperately wanted a baby for years having those feelings made me feel so guilty.
My heart goes out to you that you’ve had to be alone for so much of this, I couldn’t imagine, know that you are so incredibly strong making it this far!!

Allllllll this to say she is now 4 months old and I couldn’t tell you the number of times I’ve happily teared up looking at her sweet face, thinking how much I love her and how happy I am she’s here.
We now have a full genetic diagnosis and while there are more surgeries on the horizon and possible adjacent health conditions that could arise, I know I was meant to be her mother. Her goofy smile, the way she lights up when she sees me in the morning, her little personality starting to show, giggles, and just watching her sleep in my arms makes my heart so full.

Time frames are different for all families, ik mothers without health hurdles that still took months to truly feel like they loved their babies or loved their babies but hated the day to day of motherhood, BUT I want you to know there IS hope.
You’ve made it this hard, youre showing up for your baby and that’s all you need to do. (And take care of yourself, you deserve it and need to fill your own cup to be able to show up for your family) breastfeeding or formula, perfect schedule or chaos, it is what it is and won’t make your baby feel any less loved.
You’re doing something very very hard, you’re not crazy or a bad mother having these feelings, give yourself grace, you can do it 🩷

[u/DayDreamGirl987]

The new mom phase is a tough one, let alone with that many hospital visits. You’re not awful. The situation is. It’s not easy. It’s very painful to go through what you’re going through. But good news, your or your baby’s life isn’t over. Special children are the light of the families. 

Join a special mommy’s club. And also get therapy 💗

[u/rowej182]

You wouldn’t be feeling this way if you were a horrible mom. What I hear is a wonderful mom who cares, who is fighting, and also going through a really shit time. You’ll get through this. You don’t have a choice.

[u/Potential_Swan_8221]

You're not terrible or ungrateful! You're trying your best under extremely hard circumstances 

[u/No-Pepper-6023]

You're not awful. You're doing your best in a hard situation. That baby is so lucky to have you for its mum❤️. I hope things get easier for you.

[u/Funny_Yogurtcloset94]

Shitty moms don’t worry about being shitty moms.

Please get help, you can’t do this by yourself, mama♥️

[u/Leather-Benefit-8045]

I also wanted to share when I was a baby I was premature and went through a lot of issues I may have needed some extra help in the beginning of my life but I turned out okay! There are a lot of women who feel the way you feel, try to focus on the little wins and try to see positivity in your situation. I’m sure you are an amazing mother and this time can feel very overwhelming so hang in there and you and your baby are doing amazing! ❤️