NICU Fatigue

[truckingalongforgod]

Hi everyone,
My son was born at 34 + 0 due to preeclampsia. During induction he had intolerance to labor which was later found to be due to the cord around his neck. We have been in the NICU 18 days now and he’s doing really well, right now we’re working on feeding stamina. I want to say from the bat that I acknowledge how thankful I am for his overall health and the privilege we have to be so present. I just have to vent for a second and get it off my chest somewhere.

I hate being in the NICU. I hate he has to be there. I hate having to drive 20 minutes every day to see my own freaking child. I hate having to buzz in and have someone check my driver’s license for permission to see my son. I hate having to wrestle cords just to hold him.

I hate doing small talk with a new nurse every day. I hate the lactation consultants judging my answers about milk supply and how attentive I’m being to a log. I hate having the same conversation over and over with a person starting their shift.

I hate that he isn’t home. I hate that my time with him is so limited. I hate leaving him at night. I hate that I have all of these feelings and that I can’t just be a friendlier person during such a hard time.

I’m so sorry to unload here and I hate (lol) sounding ungrateful. Just going through a bit of a rough patch. My husband and support system are great, it just doesn’t change the circumstances. I’m just tired. Taking some time away from the NICU today to just kind of catch my breath and I hope it gives me some energy to be better in coming days. I’m sad to be away from him and miss time with him, but I know I have to take care of myself too. Trying not to feel guilty about that today.

 

[worship7]

@truckingalongforgod I could have written this

My son was in the nicu for 50 days

I hated everything you describe too, I found it exhausting

The staff at my son's nicu seemed to expect parents to cheerfully entertain them and some couldn't have been more patronizing or condescending

Is your nicu open or is there some privacy? I found it helped to have curtains up around the isolette to avoid constant conversations.

 

[truckingalongforgod]

@worship7 It is so exhausting. I think I’m getting more annoyed with myself because my aversion to all of the “stuff” is making me irritable and not want to be there. Which is awful and I want to be there for him. I love being with him and holding him… I hate all the extraneous business.

We are in a private room, I just think I need to do a better job of setting boundaries or being clear about my capacity. Today when the lactation consultant came in I could feel myself physically stiffen and it just ruined my feeding time with him as she hovered. I kind of snapped at her a bit after question 28, so I think she got the vibe, which I also feel bad about!!

Sorry, I’m just in the venting stage. I haven’t moved on to solution finding or accepting yet. Haha

 

[alexa0225]

@truckingalongforgod This could've been written by me too. I'm an introvert and honestly my idea of happiness with my baby was to shut the door on the world and just be with him cosely at home. The NICU is the complete opposite of that and even now at the home stretch all these things still irritate me. I hate small talk, I hate the nurses hovering while I'm holding MY baby. I hate them undoing the blanket that I carefully wrap him in. They also keep switching the nice soft ones we got for the crappy hospital ones...? I hate how some of them talk to us like we've only just arrived. It's been 3+ months, yes we know how to do his cares lol. You don't have to explain it to us!

At the same you feel bad since they're literally keeping your baby alive. It's a shame you can't assign the nurses you click with. At our hospital we see a new face looking after him almost every visit.

 

[truckingalongforgod]

@alexa0225 Yes! So true. I feel so guilty being annoyed by them, but oh my goodness. I get told the same thing over and over again and after a while it feels so condescending. I just want to be with him and my husband in our own little world. I was getting so irrationally annoyed when they spoke to him yesterday??? Like, that’s when I knew it was kind of a me problem and I needed a bit of a break.

 

[legrandvn]

@truckingalongforgod Everyone feels this way! You are not alone. You can be grateful and be tired! Both things are true! I know i was, i remember looking over at a fellow nicu mom in the bay across from me and she has a micro premie and she could not do skin to skin with her son without five medical personnel there making sure he was ok and thinking to myself how dare i complain about my child being here but give yourself permission to feel all the emotions. Take it one day at a time you are doing great

 

[truckingalongforgod]

@legrandvn You’re so right. I’m feeling guilty about being so angry at myself/the world that he’s in there. I know that’s so incredibly irrational. But every so often a nurse will make a comment about how he’s technically supposed to still be on the inside and I’m like… you think I don’t know that??? You think I am not super conscious of how he’s too young to be trying to do this all on his own??? I know it’s an innocent comment and they mean nothing by it, but man. It just gets me!

 

[newbie2]

@truckingalongforgod That comment has got to me the worst one ever. I can’t tell you how many times i’ve gotten “she isn’t even supposed to be here yet” like shut the f*** up you don’t think i’m fully aware of that? I could have wrote this entire post my self because I couldn’t relate more to it.

 

[truckingalongforgod]

@newbie2 Right?? “He’s supposed to still be in your tummy!!!!” Oh I freaking know!! The amount of anxiety and guilt I have about it is unreal!!! I’m fully aware!!! Gah. I know people try to be helpful but like…. Read the room. I’m trying to be very level-headed but you’re making it hard with all the platitudes.

 

[nmjeepr75]

@truckingalongforgod Totally agree with all of this. Our twins came at 29w so we were in the NICU for quite some time. It got worse as time went on because I was losing patience and becoming more anxious to get them out of there. One thing that kept me going was knowing that this would no doubt be the hardest challenge we would go through. I knew that if we could get through the NICU journey we could make it through anything.

Keep fighting you're almost there!

 

[blecap1]

@truckingalongforgod I can relate to everything you wrote. It might not be worth it since you’re hopefully near the end, but having a primary day nurse who we like and trust has been a game changer for us. On days that she’s working, I make an effort to leave earlier so I can nap or get stuff done at home.

Definitely don’t feel guilty for needing to rest or for not being friendly enough! You’re going through something awful and you have to put your oxygen mask on first.

 

[truckingalongforgod]

@blecap1 You’re totally right about the primary nurse. There are so many things I probably should have spoken up about earlier but I told myself not to make a fuss and to play nice. I’d say 75% of the time we have one of three nurses that I really feel comfortable with, which is great. We got a new one the other day and she made a comment about being distracted and it sent me up the wall.

I appreciate your support and insight. I think I posted needing some reassurance, honestly. I think I put a lot of stock in “winning” the NICU experience or being the best at a crappy situation, but I just don’t think that’s honestly a feasible goal haha. I think I’m readjusting my goals a bit today.

 

[uga1785]

@truckingalongforgod 55 days in, about a month to go, and I couldn't agree more. 35 minutes drive each way, for us, means one visit per day, and food on the go. I was losing my mind after a week. 9 days in I got covid and couldn't go for 10 days. It sucked, but somehow, it allowed me to sort of reset. When I returned, I just dealt with it better. My biggest peeve is getting different information form different nurses. One says I can or can't do something, then the next day I hear the opposite form another nurse. Every one of them does things differently. Two days ago, we began non-nutritive feeding. The lactation consultant didn't even wait 30 seconds before declaring that our baby wasn't ready because she was asleep, and walked away. In less than a minute our baby's eyes were open. It was so frustrating to deal with an impatient person who is supposed to help us through this. Then, yesterday, a different consultant was much more patient. "Let's give it a few minutes and see if she starts to respond." She just hung out and was there when our baby was looking to try to breastfeed. Overall, I have found that speaking up is the best way to make sure things go as planned. Before every bath, I tell the nurse how we like to orchestrate it. I speak up if I want them to switch places with me. I speak up if I see that they are giving me contrary information to what I have received before. I tell them, when I arrive, the order in which I would like things to go. Overall, the nurses and staff have been amazing, just not always consistent.

 

[katharine456]

@truckingalongforgod I relate to this so much. Everything about the NICU is exhausting. It’s especially frustrating to have a different nurse everyday, and each one has a different opinion on things (how much to feed, breastfeeding tips, self care tips for me, how to soothe baby, etc.). It’s enough to drive anyone crazy. I’ve also been struggling with guilt if I take a morning away from the NICU, but we have to remind ourselves that those times are FOR our babies and will only make us better parents. Sending you strength.

 

[truckingalongforgod]

@katharine456 So much so on the differences of opinions. It’s like emotional whiplash and just exhausting trying to be the one constant.
Thank you so much. Yes, I’m trying to remind myself that I need to be the best I can for him!!

 

[katharine456]

@truckingalongforgod You’re doing SO great!

 

[pachymous]

@truckingalongforgod Chiming in to agree with others that said we could have written all of these same things. My son was born 34+2 and we are on day 23 in the NICU today. We spend 12-13 hours here every day and have a 45-60 minute drive to and from the hospital each way depending on traffic. I’m a slave to the pumping schedule and can’t get more than 1.5-2 hours of sleep at a time ever. My c-section wound opened slightly and will take even longer to heal now. I’m so tired even though we are also “in the home stretch” of feeding. We are so lucky and of course I’m so grateful. My son is perfect and my husband has been an unbelievable support the whole time. I am still just so jealous of families that get to have a baby and then go home together right away. This process is brutal and it isn’t fair. One day at a time. We are doing our best and that is enough!

 

[haileynicole4]

@truckingalongforgod Yes yes yes!!! My daughter is 32 days in and I'm sick of having to get dressed and get up to the NICU just to see my baby. Hopefully we are about a third of the way through. It sucks!!!

 

[bill38619]

@truckingalongforgod I was coming to basically write the same thing. My son is full term today and we’re at 63 days. I’m tired of seeing babies around us go home. I’m tired of driving 40 minutes every day. I’m tired of seeing his swing empty in our living room. I’m just mentally exhausted from being at the hospital. My husband suggested me taking a day off and it’s really not a bad idea, but I don’t think the guilt will allow me to do it.
I feel like if I don’t see him for a day I’m going to miss something.

 

[nairna]

@truckingalongforgod I feel the same way. And I’m so angry about it. My son was born 4 days before his due date. He has a rare syndrome and I’m so thankful it was caught, so thankful he’s doing well and will be well. But I hate everything for the same exact reasons you’re written here. I don’t know how much more I can take I feel like I’m visiting my kid in jail