Tips for getting through NICU/SCBU stay

[laurenamium]

I'm currently on day 10 of our stay in neonatal. DS was born at 33 weeks and is doing really well, just need him strong enough to take every feed now and to show he's gaining weight and they'll let us go home. I'm aware though that this can take weeks. He's already took a backwards step this week and is back on alternate tube/ bottle feeds (my expressed milk)...

I have a DD at home and I feel like I'm splitting myself in 2.. I feel guilty he came early and that its my fault he's having this start in life, guilty that DD isn't getting the best of me. I cry every time I leave the hospital to come home, and most days there's tears at some point during the day.

DP is doing his best to support me and doing the nursery runs for DD etc, but I feel like I'm crashing.

Does anyone have any tips that makes life easier during DS stay? I'm sick of crying and I feel useless

Oh it's just shit really, isn't it.
The only advice I have is to be kind to yourself, though I know that it is easier said than done. I only had my preemie (30 weeker) to deal with so didn't have the additional tug of another DC at home. I wanted to be with mine 24 hrs a day but had to accept that it just wasn't feasible (though that didn't stop me calling the unit at 3am just to make sure he was okay most nights).
It is perfectly normal to cry every time you have to go home and leave him there (and spend most of the day snivelling next to the incubator)- I know I did- as it just feels so wrong but you also have to rest. Honestly, the best thing you can do for DS at the moment is keep up with the expressing, try to spend some quality time with DD and try to eat, sleep and rest as much as you can now because he'll be home before you know it.
Yes it can take a little while for them to get the hang of feeding as the whole suck/swallow reflex doesn't really kick in until 34/35 weeks and because they are just so small and easily-tired they just can't handle staying awake for long enough to take a whole feed but he'll get there and it can be that the change comes in a matter of days.
If it makes you feel any less like a sobbing guilt freak, I wrote about my experiences of having a preemie here: tryingtosurviveparenthood.wordpress.com/2014/11/17/premature-birth-bloody-awful-bloody-wonderful-bloody-miserable-bloody-miraculous-2/

Oh thank you sheba it's just good to know I'm not the only one feeling like this. Everyone else there looks like they're handling it fine and I'm a crying mess the whole time!

Ill definitely have a look at your blog! Thank you!

Go easy on yourself with the mummy guilt. You need to pace yourself, the first few months at home will be hard too so this game is a marathon more than a sprint. Dd was in for 81 days, by which time we were all pretty much broken. Accept temporarily, that no one can have perfect mothering, nones needs are entirely being met because you're going through a good old family crisis. Good luck.

Brilliant article Seba. We had a better birth but given she was a 855g 27 weeker crappier nicu stay with bleeds, vents, heart holes, lung damage, you name it. But you really captured what it's like. It was cathartic to read. Thanks. I must be crazy but once dd - now three and utterly amazing if possibly a little, um, quirky due to her tough start - starts school I'm hoping to retrain as a nicu nurse.

I'm afraid I don't have many tips as I am in a very similar situation,I am lucky enough to be in one of the parents rooms in our local unit but then don't get to see the kids at home much,in the same feeding and growing stage as you too which is nearly the hardest so far as at the start it seemed like lots of progress quickly and now it is very slow. We have had what feel like breakthroughs and then several steps back. I feel guilty constantly that the other two have so little contact with me while we're in the unit.
The only advice I have that is keeping me going is that baby will improve and things will get better. Rest when you can-if like me you are expressing every 3 hours I know this is difficult- and try to have some normal conversation, not about baby's progress each day.

Other than that I'm afraid all I can offer is sympathy,if you find anything else that really works please let me know!If it helps I am the sobbing mess in our unit and everyone else looks like they are handling things really well!

Thank you flippity and crazy! I think I just need to accept I can't do everything for him at the minute and that he's in the best place for now with the best care. Ill have my turn at doing the best I can soon...

Hello. My DD was born at 25 weeks nearly two years ago. We spent 72 days in NICU with her, and I've been sitting here trying to remember my top tips for surviving it. It is the most awful and shit time, but please take heart that it does become a smaller and lesser thing over time. Be kind to yourself.

Things I found helpful were:

• writing a blog for ourselves and friends and family. It meant we didn't have to talk on the phone to people when we were exhausted or have awkward conversations where people didn't know the best thing to say. It also meant we controlled the info that we wanted to share and there was no chinese whispers.
• eating as well as we could manage - vital for expressing mamas
• having some rest time during the day, away from the unit and the bleeping - like a short walk outside or a dazed trip to the supermarket.
• silly, but incredibly important at the time - I brought a handmade large quilt off etsy to cover our DD's incubator. It meant she was properly in the dark and could rest. It symbolised for me that she was mine, this thing was hers, and that one day she and her brother could sit with it on the sofa. And they do most days now. It also meant that I could dare to dream to take her home and believe she might be ok. A sign of courage, for her and me.
• story tapes on my phone. I could put my headphones in by her incubator and listen to a book and watch and wait.

I hope all goes well for you and your family. X

Love the quilt idea!!

We had 4 months in NICU/SCBU's and I don't think there is an answer. Lots of tears, exhaustion, beating oneself up, thinking 'it's not fair waahhh', finding other people rather tedious with their inappropriate comments/dapsy questions.... Should I go on . We were very much one day at a time. I did a lot of the only things I could do: pump for Britain and read a lot of stories through the holes in the incubator.

Thank you blongo and bigtrouble, the blanket idea is a lovely one and it made me cry anything makes me cry these days!

A good cry is so cathartic, let it all out. Sometimes I'd watch a daft programme that would be funny, and then I would laugh. Hysterically laugh, which would turn into hysterical crying. Sometimes I just needed to get it out, and all the stormy emotions that I sat on in NICU being brave needed a vent.

You've made me cry about the quilt, it's become a lovely part of the living room now, I even let the dog sleep on it when I'm feeling extra nice - which is not often! Feeling a bit sad today about DD's birth, I think the run up to her birthday is a tough bit of the year, all the sensory triggers an all. But you should know that despite her v v early arrival she's a wee dynamo. She runs, climbs, sings, talks and is very into cuddles. It feels like we are catching up on lost time of cuddles whilst in NICU. Sending a hug for you and your boy. X

Oh sweetheart. How tough. My tips, for what it's worth (DD was 34+0 and spent 3.5 weeks in NICU)

• Patience, hard as it is. Of DD's 3.5 week stay, the last 2.5 weeks was just learning to BF and put on weight. We kept thinking "home soon" and having hopes dashed. So i'd say, expect to stay in till 37ish weeks and anything earlier is a bonus.

• Are you aiming to BF? if not, you may get out quicker than us...

• Pace yourself and get rest where you can, your DS will have a long newborn stage even after he is home so you need reserves for then - it is in your DS's interests for you to spend some of this time sleeping rather than at his side although I completel understand that is difficult.

• Try not to google anything medical, at least not until you've had a full explanation from the drs. I caused myself several unnecessary panics that way.

• Please don't blame yourself for DS coming early. There is virtually no chance it is anything you did.

• Remember almost all mums of 2 children feel torn and guilty. You have it worse of course, because your 2 are in different places and because of the stress, but even if DS was at home, you'd probably still feel you were neglecting your eldest due to the constant newborn feeding etc. Small comfort perhaps...

• Call the NICU as much as you want when you are at home, even just to ask how many mls last feed etc. I found getting to know the nurses helped me feel happier about leaving DD.

• Agree with others about having a bit of "normal" time every day which is not NICU related. I didn't really and went a bit nuts.

• About DS going backwards this week: a NICU nurse told me that 34/35 weeks seems to be "holiday mode" for some prems, especially boys, where they don't progress much. Then they make very quick progress once they come out of it. So, that might happen with your DS.

Very best of luck and hope you are home soon. xx

Hopefully you're all home together now, but in case other MNers read this in future...

DS2 spent 3 weeks in hospital when he was born (35 weeks, but only 3lbs 5ozs due to rubbish blood supply). Ds1 was 3.6. It was grim.

Can only echo what everyone else says - try not to torture yourself, I did and it does no good whatsoever. Take as much help as you're offered, let standards drop as much as you can.

Try to spend a bit of time with your eldest every day, and explain if they're old enough - DS1 was devoted to his baby brother from the beginning, and we told him as best we could why we were worried. Accept you might get a bit of regression (DS1 started wetting himself again after being dry for months) - that's not your parenting, it's their reaction to stress. DC notice more than you think.

Cry when you need to. Have a glass of wine in the evenings and try to enjoy the single lonely positive of SCBU - time to rest and recuperate without getting up to a newborn at all hours.

DO NOT turn yourself into a demented, obsessive loon WRT trying to get bf started (if this sounds like the voice of bitter experience, it should...). But the Analytical Armadillo blogger is AMAZING if you need some advice.

When in hospital, get out and have a walk in natural daylight every couple of hours. Hospitals are weird and draining places.

Never, ever let yourself feel that your LO is less your baby because they're not with you. Our nurses were very firm from the beginning that he was ours, and we were responsible for his care. He recognised my heartbeat from the first day I could hold him and used to calm down instantly.

Be prepared to take a while to recover from the experience - but remember the baby won't ever know a thing about it.

For what it's worth, DS2 is now 4 - healthy, charming, stubborn, fearsomely articulate and you would never ever know it had happened. He enjoys the stories of how he had to stay in the hospital in a special box, but a story is all it is.

for everyone going through this.

Hope your DS is safely home now and you are beginning to get used to family life at home.

DS1 was a 24 weeker and we were in for a loooong time. For a 24 weeker, 9 years on he is much healthier and much more able than we were told to expect, though he has most of the after-effects that 24 weekers generally get as their 'badge of honour'.

If you are still in special care - and for anyone else in a similar situation reading this - both NICUs that we were in took daily story time very seriously. All the parents were encouraged to bring stories in and read to their babies at least once a day. We read Winnie the Pooh every day, with Pooh finger puppets that a friend sent us especially for DS. One of the mums found reading children's stories too tear-jerking, so she read her twins issues of Grazia! - the sing-song voice and quiet time with the baby/ies being more important than the literary content! Older children were encouraged to join in too as a whole-family bonding experience.

Best of luck, and hope that if you're not home yet then it will be very soon. x