Overwhelmed need to vent

[gforperplexed]

Hi everyone, our first child is on his 8th day in the NICU. He was born at 25+1. He's doing well all things considered. However, I'm not. I realize there's a lot of these posts, but I am so overwhelmed and I just need to take a minute to yell into the void here.

I am exhausted. The pregnancy was a shit show and long story short, we were supposed to have twins, one died and I delivered her vaginally a week prior to our son. My C-section recovery has been tough and I'm in some sort of pain most of the time.

Pumping sucks and is so stressful - Did I clean the parts good enough? Am I making enough? I missed a pump, is that going to impact my supply?

I feel so guilty when I leave the NICU and so useless when I'm there. I feel like I should know what I'm doing but I don't, and there's all these wires and devices to work around, and it seems like the nurses and dad do it better anyway.

I hate hearing the alarms and knowing I can't do anything - or worse yet that they aren't accurate and mean nothing and the thing that it's alarming for is actually being measured by some other machine??

I hate everyone texting me and calling every day - How are you? How's baby? I don't have the capacity to inform everyone of everything. Like I'm barely remembering to eat and drink between everything and you expect me to just drop everything to satisfy your curiosity? God forbid the person I don't text back is my mother, because then I get the "You're too busy to reply to your mother?" guilt trip.

I hate being told "make sure you're journaling and keeping track of everything so you can look back!" See above. I'm lucky to remember to drink. Quit telling me what else I need to be doing.

I hate being 7 hours away from my husband, my dogs and my home.

I hate having virtually zero privacy.

I love my little boy, but mostly I fucking hate this jOuRnEy we are on.

 

[faye58]

@gforperplexed Thank you for posting. It’s validating for me. I didn’t want to send photos. Fuck off. I don’t have updates. Fuck off. The situation you’re in sucks. It isn’t fair. Yell as loud as you can into the void. Sending hugs and solidarity. I am so sorry for what is happening.

 

[gforperplexed]

@faye58 I just feel so bitter about everything. I hope that feeling eases itself a little, but man. Right now... You're totally right. Everyone can fuck off.

 

[faye58]

@gforperplexed My bitterness faded as improvements happened but it takes time. Unfortunately I won’t tell you it gets easier but you do acquire more skills along the way to help process/deal.

When people asked for updates I said - there won’t be a ton of updates - “babies name” is getting their womb time in the nicu and needs time. I appreciate you touching base and letting me know you’re thinking of me - it’s good to know we are on your mind during these trying times.

 

[leaderoftheband]

@gforperplexed Helllooooo,

First of all, the best you can do everyday even if it is bare fucking minimum is good enough and don’t let anyone tell you different.
I am a mama of a 24 week miracle baby and I felt all of these things immensely as well. Except for the twin grieving and I’m so sorry to hear that happened.
Everyday I felt useless and more tired and more exhausted of answering questions. So here’s what I did.

I asked the nurses what I could do to help so I felt like a mom and not a bystander. It helped so much.
Then I journaled my frustrations and celebrations when I felt like it but didn’t put any obligations on myself. I didn’t shower for a week and I am guilty of not remembering to eat before running back to the hospital. With every setback, my heart broke more and my frustration grew but the accomplishments made everything feel so hopeful still. You are going to have awful days and great ones and its okay. It’s okay to feel however you feel. You don’t have to explain it.

What I did with the updating is started group chats and I only sent updates once a week to everyone at once and if they weren’t in the chat, I copied and pasted the message and sent it to others. I didn’t answer every text or every question. They got to know what I told and when I told them. Be selfish right now bc you are the one walking this journey! Not them. Do whatever you need not what they want.

It does get better bc you celebrate baby and you learn along the way and people become family and it’s kind of amazing to be apart of, in such a sad situation, I found so much community and love.

I am still on our NICU journey. Month 5. LO was born on January 2, he has had 3 surgeries already and he’s 7lbs 10oz and in January he was 1lb 4oz. I am never not amazed by his looks, growth, and progress!

There will be days where you will feel like it’ll never happen, they will never get there, but before you know it…. They will. You will survive. Everyday if different so just be gentle on yourself and straight up with everyone else.

Sending hugs mama. I understand.

 

[mike84761]

@gforperplexed I’m so sorry for your loss. Sending love to you, mama. This stage just fucking sucks.

If you want some advice, I would suggest designating one person to provide updates to everyone else. It could be your mom or your husband or anyone else really. But you can have just one person you talk to and they can manage communications with everyone else who wants to know about baby. Or, y know, it’s also 100% fine if you don’t want to talk to anyone. Just don’t pick up. It’s okay. You are in emergency mode.

I’m very confident you’re doing your best right now. It’s okay if you want to focus on healing. You can always pump more often later. Or not. That’s also fine. You will learn the ropes of the NICU in the coming weeks. It’s all very confusing now, but it’s going to be less confusing as you go.

If this helps, I wrote this post for our team at r/preeclampsia about the different types of breathing support: https://www.endpreeclampsia.org/forum/babies/breathing-support-explained

 

[kmckinne]

@gforperplexed I am so sorry you’re going through this. My 32 weeker really put me back on heels as he was born via C-section related to a placenta previa bleed that began earlier that morning. The whole NICU experience is rough and when you’re isolated from your partner it’s that much harder. I was not interested in giving updates or responding to individual texts so we started using an app called Notabli. There’s a free version (but you can’t add videos) and it’s like a very private photo sharing for only people you I send an invite to. Our kid had a rough first 4 months which made my life really challenging, but he’s 7 months old now (5 adjusted) and I do appreciate being able to look back on some of the photos to see how far he has/we have come. I recommend you doing whatever you need to do for yourself. You are your baby’s #1 and they already know your voice. As another post recommended, getting involved with cares as early as possible - taking temperature, helping with diaper change - will empower you. This is a challenging road and I wish you the best.

 

[mistie87]

@gforperplexed I was in a similar situation. One of my twins passed at 26 weeks, and then they delivered both via emergency c-section 4 days later. We were in the hospital for more than 100 days.

Pumping wrecked me, and now that I’m more informed, I’m pretty certain I had DMER. Once my son started taking breast milk, he quickly surpassed the supply I was able to produce. I tried everything to increase it and nothing worked. It turned out my BM was causing him to have awful reflux so the doctor advised we switch to a special formula, but that couldn’t be mixed with BM. I’ve never felt more relieved in my life that being told I wouldn’t need to pump anymore and now I’m adamant that if we have another child, I won’t even attempt it.

Why on earth would you know what to do? Nothing about NICU life is normal (except maybe to doctors and nurses working there.) your babies should still be inside- don’t be hard on yourself if you’re not confident and totally comfortable. It gets easier, but it was never easy. But, talk to your nurses. I found that ours were quite willing to explain things to us. At one point I became so overwhelmed because we kept having twins placed with us and I couldn’t stand to see them. The nurses moved us to help me cope. It’s been 3 years and we still talk to our primary nurse.

As far as the constant updates, we actually has someone close to us send out texts requesting people not ask. We posted occasional updates on social media when we felt up to it, but turned off comments. Having someone else set the boundary for us was a massive help though. With parents, I actually did tell my mom that yes, I was too busy for her because my son was literally on the verge of death and when I wasn’t beside him, I was grieving the loss of our other one. She learned to back off real quick.

My son was born in the height of covid, which was terrifying but also in a lot of ways so great because I didn’t have to deal with people wanting to visit or having to make time for anyone. When my son finally came home we had nearly a month to ourselves to acclimate.

My son is 3 now. He’s happy and healthy. We spread the ashes of our lost son at a scenic overlook that we visit every year on the anniversary of his passing. Now that I’m on the other side I tell myself that I got extra time with my little survivor and got to see milestones (like his eyes opening) that other parents don’t get.

 

[mcgrath]

@gforperplexed I’m a FTM of 28+3 twin girls, one passed away after 2 days, our surviving girl is on day 65 in the NICU, no one prepares you for losing your first child and no one prepares you for being a NICU parent or having to do both at the same time, I’m so sorry for your loss, I had to split my emotions into two buckets - one for grieving and one for giving love and joy to our surviving girl just like she always deserved, what really helped me in the beginning was just taking it one day at a time, don’t worry about anything else except today, don’t worry about updating others, your friends and family can help you by sending gift cards for food so you don’t have to think about what you’re going to eat, I know the NICU can be intimidating but remember this is your child and you can touch them and be as involved in their care as you want, change their diaper, take their temperature, and do skin-to-skin as much as possible - in that moment nothing else matters except holding your LO, ask questions but sometimes you don’t even know what questions to ask, I highly recommend this book it was super helpful, Preemies - Second Edition: The... https://www.amazon.com/dp/1416572325?ref=ppx_pop_mob_ap_share

Stay strong Mama your LO is lucky to have you

 

[kayvin]

@gforperplexed Ugh I can’t relate to everything as a NICU father but I can relate to so much of this and I’m sorry for everything you’re going through. My wife is having a terrible C-section recovery right now. I have the same concerns with my wife not yet producing milk and with properly sterilizing the equipment. My wife helps as much as she can but she’s very immobile right now so it’s very tough. The constant request for updates from well-meaning loved ones is exhausting. “I feel so guilty when I leave the NICU and so useless when I’m there,” describes it perfectly. I can’t wait until the jOuRnEy is over. I just want to take my daughter home. I just want to even be able to hold her. I was holding it together for the most part until we first came home today without her. Now, between helping my wife with everything from walking, to pooping, to wiping her butt, visiting my daughter in the NICU as much as possible, and preparing to go back to work, I am trying to find time to cry and release these emotions. I am hoping for the best for your son and my daughter . Sending lots of love to you guys.

 

[monie4bible]

@gforperplexed I’m currently staying at the hospital while
My son is in the nicu and I feel all the same things it’s hard it will get better though the first week was very tough then you get a routine down. I’m sorry for your loss

 

[bringmetothelight]

@gforperplexed Im a fellow mama of a 25+1 weeker hugs to you and sorry for the baby you lost. It’s just so incredibly annoying when people ask for updates for a very long time I just said if he was stable or if he had some issue. I told my mom that except she my sister and brother no one was welcomed to call and I would pick up if I wanted. I set real boundaries around other relatives not reaching out to me and it really kept me saner. Be easy on yourself it’s just the 8th day I couldn’t muster the courage to look at him properly before day 4. The only thing I did was pump I set alarms every 3 hours and pumped for 10-15 minutes. I asked my husband or mom to wash the parts 5/8 times I only did it few times. Slept and wept in the afternoon. I mostly just started attending doctor rounds every morning and slowly by reading on internet understood more things. I also started kangarooing, some care stuff and slowly started understanding my baby by week 3. Just take it slow ask and understand simple questions what is his breathing support how much oxygen. Do the weekly sit ins with the doctors ask for plan of the week could be increasing decreasing oxygen or some test etc. then keep monitoring if these things happened or not. Observe your baby for any change in his mood responsiveness etc… you will get there and it’s fucking hard but there’s light at the end of the tunnel… just focus on resting. First 2 weeks I only visited during Doctor rounds and 15 minutes around that

 

[anna_a]

@gforperplexed It’s really sad that we all get it, but we do. Your feelings are completely normal. I also lost multiples and that grief was another layer. I’m sure you are feeling a lot right now, plus just dealing with it all. PM me if you want the link to a FB group I think could help.

You are absolutely doing your best. This is an incredibly stressful situation and people just don’t get it. Don’t message them back. Turn off the notifications. Do what you need to do. It’s all okay!!! You are right that it’s hard to even get yourself fed. Come vent and ask for help anytime.

 

[kmman]

@gforperplexed Thank you for venting. I feel less alone. Sending you love and solidarity. You're an amazing mama period.

 

[stqqabors]

@gforperplexed I feel this post so much. First let me say how valid your pain, feelings, and exhaustion are. Please please please advocate for yourself - the NICU should have resources for you to talk to a professional, receive support, and possibly an advocate for you and your son.

Second, I am so sorry about the loss of your other child. I cannot fathom what you’ve gone through so far - a vaginal delivery to your angel child, a traumatic c section to your sweet boy, and now a NICU journey so far from home. You are so strong to be at this point, but it is okay to feel miserable. I hope that you don’t experience guilt over how you feel during this part.

Third, people think they’re helping by texting. One thing I did when my son was in the NICU was ask my husband to deal with people. And by deal I mean I had him tell them (gently) to fuck off. We didn’t have to emotional capacity, strength, or energy to send grandma a daily update and pictures. We only sent out updates of something drastically changed. He explained if we didn’t reach out they could expect stuff was the same and to leave us alone. We’d share updates and pictures when we felt like we could and to stop pestering us. Know that these people mean well, but also feel you can ignore entirely until you have energy or tell them to F off for now and you’ll provide info when you can or have your partner handle that side of the house. While your partner is also experiencing a version of grief, challenge, and exhaustion with the NICU, they are not healing from delivery trauma. Therefore, ask them to take on a greater burden when dealing with loved ones because you have a million things happening in your body as you heal.

Fourth, ask for help. Whether it be emotional, mental, or physical. If you need pain meds - ask for it. If you need a therapist - ask for one. If you need someone to advocate for you or your son’s care - ask for it (my hospital had parent advocates which was so helpful). If you need mental health support/medication - ask for it before it gets worse. The best thing you can do right now is take care of you. The NICU team is there for you son. You need to ensure you’re getting the support and care you need so you can show up for your son, even if that means temporarily stepping back for your treatment/mental health/healing.

You have got this.

 

[lilaxluv]

@gforperplexed Oh my goodness I wish I could like this post 5 million times. I am in the exact same situation with our baby. We have been here for 52 days. And no end in sight. Completely overwhelmed is an understatement. I wish I could say magic words to make it all better, but just know you are not alone.

 

[deniseb8]

@gforperplexed Girl. You're grieving a loss, while celebrating this birth. That in itself is enough to deal with. Add to that: hormones, worrying, trying to absorb information, being not at home, RECOVERING FROM MAJOR SURGERY, having to update people...It's too much. Choose 1 person(your mom? Let her feel like she's helping also)to text any updates to and let that person pass them along. You need to focus on you and baby right now. My son is 16 and I still get triggered by sounds that remind me of the NICU. It's a Rollercoaster. Sending love to you

 

[rrandall]

@gforperplexed I hear and feel your pain. I really could have written these exact same words in December when I had my 25 weeker. I hope you can find a nurse who sees and empowers you. I would not have made it without my carol, she explained things and made everything that seemed so insane seem.. normal. She assured me he would be just fine based on her 30 years of experience. Of course in retrospect she has no way of knowing that but clearly she saw my fear and maintained belief for me when I couldn’t. Also she was hilarious.