SCBU/NICU help

[BeanEm]

I had my baby 10 days ago at 28+2 and was discharged from hospital a week ago but left Monday, I was able to stay in transitional care until I was ready to leave. I forced myself to leave having been in the hospital for a week and a half already, I thought it would be healthy.
It was the hardest thing I've ever had to do, I cried the whole way home and haven't really stopped since. Every time I'm away from him I set myself off thinking about how separated we are and feel like a failure for not being able to care for him. I feel so flat and don't know whether I'm coming or going when I'm away from the hospital.

My partner is doing his best to be supportive, but there is only so much he can say/do.

This journey could go on for months before we get him home. What can I do to get through this? Its absolutely killing me!

I really feel for you; when I had to leave my DD in SCBU it was one of the hardest things I had to do and it was hard every day when I had to leave after visiting her. Are yours good about you calling them? I used to call them just before I went to bed and when I woke in the night which they encouraged; it was a 30 second phone call to give me reassurance but one of the nurses explained it like when you check on your child before you go to bed when they’re in the next room.
The only advice I have is to take each day at a time and look after yourself by eating, sleeping and resting. Having a premature baby is traumatic and you’re most likely still in shock; my family helped to keep our lives running by doing food shops etc so we could concentrate on visiting our baby which really helped.
As hard as it is to leave hospital I can see looking back that it wouldn’t have been healthy for me to stay there for weeks on end and that me and my DH needed to be together.

I have been there and it is so tough.

Just think they are with the best possible babysitters. Agree that phone calls to the ward through the night will help to reassure you.

You need to keep you strength up at this time so make sure you take the chance to rest and take care of yourself so you can be there fully for your baby. baby will be home in no time and this will all soon be a distant memory.

Come and join us on the Parents of Preemies Support UK.
Take lots of photos. Lots of videos. I kept a diary. I also worked myself into a really fixed routine and that helped. (I had an older son). So roughly I was doing:
Wake up at 6:30 am. Pump.
Wake up DS1. Get him ready for school.
Drop him off and head to the NICU.
Check DS2 was ok and pump again around 8:30.
Wait for ward rounds around 9. When he was a bit older I would hold him.
11:30ish. Put him back in the incubator. Go and pump. Eat some lunch.
Back from 12:30 onwards (when he was in an open cot I would hold him again).
Stay with him till 2:30.
Go and pump.
Go get the older one from school.
As he was doing homework, pump around 4:30.
Give him dinner, bath, bed.
Pump while he was in the bath around 6:30.
Leave him with my mum and head back to the NICU by 8.
Hold him till 10ish. Pump.
Check on him till 11ish and then leave.
Come home and do a short pump and go to sleep around 11:30/12.
Wake up at 2:30/3 to pump.
Wake up for the day at 6:30.

It was BRUTAL. But having this really fixed routine on weekdays really really really helped me. I am a person of routine and it kept me from thinking dark thoughts. Over time the nurses also learned when I was coming so they would leave nappy changes and cares for me or not tube feed when he was older and wait for me to breastfeed.

Also I always called the ward at my 2:30/3 am pump and then DH called them at 6:30 am.

I had a 26 weeker who is now 3 and a whirlwind.
I did rely on friends and family a lot. And would ask people to do specific things. One day a week a friend picked up DS1 and took him home so I could stay longer in the NICU. Another friend made a big batch of tomato sauce for pasta/fajitas for me every week and one big pot of soup. My mother flew in from overseas and despite her weakened mobility helped as much as she could.

DH spent almost all day on the ward on weekends so I could be with DS1.

Yes, I can definitely phone at any time, day or night and it is encouraged. Though I try to only do it when one of us has had a bad day as a pick me up!

My partner is encouraging me to be at home for dinner every night so we can spend the time together and it breaks me out of the hospital bubble.

I bought a journal off Amazon called 'Our NICU Journey' and I fill that in every day when I'm at the hospital, helps me keep track of everything that's happening without it getting on top of me.

Oh wow HuloBeraal how did you keep that up? I think I would be on the ground!!

How long did all of your little ones spend in the unit? I know every baby is different it is just nice to hear how old and how long they spent!

Thank you for taking the time to respond to my venting though! I was having a really awful day!

Mine spent 69 days. In the grand scheme he had a fairly smooth ride. He was discharged at 36 weeks. (And he wasn’t on oxygen)- many 28 weekers and under are often discharged on a trickle of oxygen.
He also had a left sided intraventricular haemorrhage. He’s 3. He’s fully caught up size wise (did that by about 12-15 months), and in all areas.
Roughly I noticed he met his milestones somewhere between his corrected and real age. So sat up at 8.5 months, crawled at 11.5, walked at 18 (which would be fairly ok for even a full term baby). He’s always been very verbal and by 20/21 months I stopped telling ppl he was premature because both size wise and cognitively he was at par with his peers.

The one thing NICU taught him was to sleep independently. My full term older son will still snuggle into me at night given half a chance. This one needs to be absolutely left alone. He was ill last week and I kept him in my bed in case he spiked a temperature. He sat upright at 2 am and announced: You are really bothering me Mummy. Your bed is bothering me. You are bothering me. I am going back to my own bed.
And off he went. 😱😱😱😱😱😱😱
Interestingly he HATED kangaroo care and skin to skin in the NICU. He was much happier when he was clothed and lying on top of me fully clothed.
These preemies come with their personalities fully developed, I tell you!

I’ve been there too so I know what you’re going through. My son was full term but he developed a life threatening condition some time after 33 weeks so he had to be in the NICU for a while. It was the hardest thing to leave for the hospital expecting to bring a baby home and then to return without him. I couldn’t even look at his little infant car seat sitting there unused. My husband and I just cried all night. Having to go into the dim, airless NICU every day for hours at a time was really draining too. We would just sit by his bed, unable to touch him because of all the wires. It took me a long time to feel like his mother because I didn’t get to do any of the things I thought mothers did. No breastfeeding, no skin-to-skin, no nappy changes, no baths, etc. I was also encouraged to pump breast milk around the clock so I often had to leave him to go and do that (pointlessly, as it turned out). I used to look at the before and after photos on the wall of babies who had made a full recovery and wonder if my son was ever going to be like that. I think I was kind of afraid to let myself love him in case he didn’t make it. I was just utterly shell shocked from how unbelievably wrong everything had gone. It was like a horrible nightmare I couldn’t imagine ever ending.

He is nearly 2 now and completely healthy and normal. He is the absolute love of my life. I feel like I’m going to burst with happiness every time he toddles over and says “Mummy, hug, kiss!” What happened in the NICU seems to have had no effect on him or on our relationship. He was and is the easiest baby ever (unlike his new baby sister!)

All I can say to you is, take things one day at a time. It might not seem like it, but every day, your little one is getting stronger and stronger. Before you know it, you’ll all be going home together to start your new life as a family. In the meantime, don’t force yourself to sit by their bed all day. Go for a walk, get some fresh air, have something to eat, maybe even see a film (we actually did that just to distract ourselves for a couple of hours). Know that whatever you feel is OK. You WILL all get through this and be stronger for it! Best of luck to you x

*most definitely the longest 30 days of my life.