My Journey through NICU

[Mummyloves09]

A bit of background about myself. I gave birth to a 25 weeker. I have been in NICU for 3 weeks and 3 days and we are on the rollercoaster ride.

I notice when I speak to people they always refer to the end goal which is baby will be out and everything will be fine. I get what they are trying to do However I'm currently in the present dealing with day to day issues.

I just want to create a thread where post and present NICU parents can share their experience and coping mechanisms they used.

(I know there are lots of social media forums however I don't have any other social media accounts)

I'm at home with my 28 weeker now after 10 weeks in NICU. I know people mean well, but I found it infuriating when family and friends would just tell you that everything would be ok. They always tell you about someone they knew with a preemie and how well they'd done, etc etc. It's so hard when you're living the rollercoaster day to day, nobody else can ever understand the emotional journey it is. I also think people just assume it's a given that the baby will be ok and don't quite realise all the medical problems these babies have to overcome. For the first 5-6 weeks I wasn't sure if we'd make it home at all, so you're right, it doesn't help when people focus on the end goal. Things like NEC, infections and CLD don't cross the minds of people not familiar with preemies. My baby was due at the end of January and every single person kept saying "I bet she's out for xmas" or my all-time favourite "have they given you a date to go home yet?". I don't think they could comprehend that she couldn't breathe on her own, couldn't feed, had millions of bradys and desats a day... I'm not sure I developed any coping mechanisms... I found focusing on expressing gave me a purpose every day, made me feel I was doing something practical. I also got super involved- I was there for every ward round and made sure I understood everything. It also helps to look back and see where youve come from, even when it feels like you're taking backward steps there is usually something that's better than the day they were born. Baby steps. Take each day as it comes. Thinking of you xx

I had a preemie nearly a year ago now and I also found people talked a lot about when she comes home whereas I used to focus on each day and hoping that would be a good one.
As previous person said I found expressing made me feel I was doing something useful even when I was at home although it was hard going to make myself do it sometimes.
Take the help from people who offer it too; if people offer to do you a good shop or meet you at the hospital for a coffee so you have a little break but don’t feel too far away that’s also important.
I also found that having a little distraction like a sudoku book helped as I used to sit next to DD in her incubator and do it. It didn’t take too much concentration but stopped me worrying.

Yh I have been trying my best to keep busy. The last 2 weeks has been hell a combination of her pda, a collapsed lung and infections haven't helped. But hopefully it's looking ok for now.
It is really hard and I honestly don't know how mothers and fathers leave NICU sane.
Thank you

You will get there op. Its such a bloody hard place to be and you feel like you're in limbo. You don't get to enjoy your newborn the way everyone else does and even now more than a year later i still feel like i was robbed of the first few weeks of their life. although I'm so aware of how lucky i am that my twins made it through and touch wood seem to have no lasting effects from oxygen deprivation and 9 weeks prematurity.

I had specialist post traumatic birth counselling a few months after they got out and it helped me so much. The breast is best message almost broke me and i ended up beating myself up for months about putting them on formula. My milk never came in and wasnt helped by a nicu nurse giving me the wrong equipment with the pump which led to really severe bruising to my breasts. On top of the other trauma i had no chance. But now i barely think about it and they bring us so much happiness every day.

Staying sane? Spending as much time as humanly possible doing skin to skin, talking to them and singing to them so i could feel like their mother. Take as much help from everyone as you can. Ask for what you need from the people around you, not just now but when they're home too.

I hope things stay looking up for you.

We've been out of NICU/SCBU for a week after a 17 week stay. I think there is just no right thing to say to a parent going through it and those with no experience, know it's hard but can't comprehend the full horror.

Nice idea for a thread MummyLoves.How is your baby doing now?
I gave birth to my 27 weeker son last December. I got pregnant again in August and was due end of May, however I went into labour on Monday just gone, and gave birth to DS2 at 33+4. It's very different having a 33 weeker this time, however I'm totally shell shocked to be back in NICU as I hadn't really had issues this or pregnancy and had been expecting to go to term.
I totally agree with you about how lonely the experience is and how little others understand. Everyone means well of course, but what I find is that I get so fixated on pleasing others and keeping them happy with my updates that sometimes I feel like I have to deny my own fear and sadness in order to keep everyone ticking over with the 'everything's fine' narrative.
Hope you are ok, OP

Nice idea for a thread MummyLoves.How is your baby doing now?
I gave birth to my 27 weeker son last December. I got pregnant again in August and was due end of May, however I went into labour on Monday just gone, and gave birth to DS2 at 33+4. It's very different having a 33 weeker this time, however I'm totally shell shocked to be back in NICU as I hadn't really had issues this or pregnancy and had been expecting to go to term.
I totally agree with you about how lonely the experience is and how little others understand. Everyone means well of course, but what I find is that I get so fixated on pleasing others and keeping them happy with my updates that sometimes I feel like I have to deny my own fear and sadness in order to keep everyone ticking over with the 'everything's fine' narrative.
Hope you are ok, OP

Nice idea for a thread MummyLoves.How is your baby doing now?
I gave birth to my 27 weeker son last December. I got pregnant again in August and was due end of May, however I went into labour on Monday just gone, and gave birth to DS2 at 33+4. It's very different having a 33 weeker this time, however I'm totally shell shocked to be back in NICU as I hadn't really had issues this or pregnancy and had been expecting to go to term.
I totally agree with you about how lonely the experience is and how little others understand. Everyone means well of course, but what I find is that I get so fixated on pleasing others and keeping them happy with my updates that sometimes I feel like I have to deny my own fear and sadness in order to keep everyone ticking over with the 'everything's fine' narrative.
Hope you are ok, OP

Nice idea for a thread MummyLoves.How is your baby doing now?
I gave birth to my 27 weeker son last December. I got pregnant again in August and was due end of May, however I went into labour on Monday just gone, and gave birth to DS2 at 33+4. It's very different having a 33 weeker this time, however I'm totally shell shocked to be back in NICU as I hadn't really had issues this or pregnancy and had been expecting to go to term.
I totally agree with you about how lonely the experience is and how little others understand. Everyone means well of course, but what I find is that I get so fixated on pleasing others and keeping them happy with my updates that sometimes I feel like I have to deny my own fear and sadness in order to keep everyone ticking over with the 'everything's fine' narrative.
Hope you are ok, OP

Nice idea for a thread MummyLoves.How is your baby doing now?
I gave birth to my 27 weeker son last December. I got pregnant again in August and was due end of May, however I went into labour on Monday just gone, and gave birth to DS2 at 33+4. It's very different having a 33 weeker this time, however I'm totally shell shocked to be back in NICU as I hadn't really had issues this or pregnancy and had been expecting to go to term.
I totally agree with you about how lonely the experience is and how little others understand. Everyone means well of course, but what I find is that I get so fixated on pleasing others and keeping them happy with my updates that sometimes I feel like I have to deny my own fear and sadness in order to keep everyone ticking over with the 'everything's fine' narrative.
Hope you are ok, OP

Oh god I'm so sorry that posted so many times! It kept saying 'message failed to post' 🤦🏻‍♀️

I agree with a pp - it used to irritate me no end when people breezily reassured me it would be fine, or the endless stories about their “friends nephews brother in law who had a premature baby who was fine”

I know it’s because people don’t know what to say, and want to make you feel better but there were times when I just wanted to scream.

As for coping mechanisms, I gritted my teeth and got through one day at a time. I didn’t find writing a diary and all that overly reflective stuff helpful at all (similarly the ‘counselling’ I was offered in the unit was hopeless) but I did used to take in knitting/books etc to keep me occupied.

Although finally being freed from NICU was amazing, I found that it wasn’t “and now you become a normal family” as you carry the worries with you - in my case a total fear of him getting sick as I’m not sure I would cope at all well with him having to be admitted to hospital for anything. I’m hoping that improves in time.. (my 25 weeker is now a year old and awesome)

Best of luck op!

Hi everyone,
Yes it is one day at a time. She is now on full feeds and optiflow so this week has been good so far. I'm ok just find the hospital emotionally draining. I feel as is I'm not even her parent. That the nurses have wayyy more control over my child ( in terms of day to day care and cuddles etc).

I honestly can't wait for this nightmare of an experience to be over.

Sending you lots of hugs. How are you doing?

When my twins were in nicu, I was in complete and utter shock. If anyone asked, I said I was fine. Took me a longtime for it to really hit me and realise I wasn’t fine at all.

One of my twins was home after two weeks but the other was in for over two months (oh and then after a week at home, into paeds HDU for nearly two weeks - which was actually worse as I had to stay there 24/7 and didn’t have a bed!).

Initially I was focusing on when we got home, but then realised we were going to be there a while and I was wasting months of their lives waiting.

I know it’s difficult but please take care of yourself. Sleep as much as you can. Take breaks. If you’re run down and exhausted, stay at home one day - it’s a marathon sometimes, and it’s such a draining situation.

Hang in there

I didn’t feel like a parent at all - just a robot. I worried my little twin barely knew who I was, and honestly it took a long time for us all to bond. They’re 18 months now and doing really well.

@tammyswansontwo I'm soo glad your out and your twin are doing great. I will try my hardest. Thank you

Hi there. I think it's so difficult to understand unless you've been there. It really is just 1 day at a time. I did find writing stuff down helpe (but I appreciate it didn't help a pp). It wasn't really a diary, but stuff like the amount of milk they'd had, anything positive a Dr or nurse had said. It was good to read it back on the crap days (and there will be crap days) to remember how far they'd come - my 27 week twins couldn't tolerate even 0.5ml of milk to start with so when I was having a meltdown 2 weeks later because one of them had been sick after 20ml, or they'd have to have another blood transfusion etc, it was good to remember that they'd made progress if you see what I mean.

I didn't open any new baby cards, didn't even tell work I'd had them for a week (they just thought I was in hospital), asked my extended family to stay away. I just wanted it to be me and the babies because with the nurses doing most things, I wanted space I think to feel like they were mine. I didn't believe that they'd come home as "normal" babies - i now know that my husband told people not to ask, and just vaguely said they'd be kept in for as long as needed.

I think for me it was finding some sort of routine - expressing / getting food / walking round the block / popping home.

Just look after yourself OP, the memory of NICU does fade in time but it's tough. There is no "right" way of dealing with it, there is no "normal" process - it's whatever you need to do to get through it. Wishing your family well x

@namechangedtoday15 I get what mean. I will try writing down positive things , I think that may help.

I also found I had a very different attitude to other parents once I got home. I was so used to fixed feed quantities, recording nappies, recording pumps etc that I recorded absolutely everything until they were 8 months old. I was obsessed with the amount of milk they needed etc. Only nicu / scbu parents are like this. If you can, try to relax a bit on these things when you get home.

Also, once your baby is out of the incubator, just hold them as much as you can. I didn’t, I think I was scared to.

I agree with TammySwanson - I was obsessed with recording milk/nappies/expressing etc. It’s hard to break free of the absolute routine and not to panic if they don’t take a full feed etc. If I could redo those first weeks at home I’d be a lot more relaxed.

In terms of you not feeling like her parent - it’s so hard because the situation is so far removed from having a term newborn, but all the little things you can do- the cares, tube feeds, changing bedding, daily cuddles etc. Once she’s bigger and more stable it gets easier.

Hang in there - another day done!

@mummyloves09 Thank you for starting this thread. My baby was born 3 weeks ago at 32 weeks and I relate to so much of what has been posted. I understand what you mean about not feeling like their parent, I have felt like that terribly at times, it is hard. My boy is in a hotcot now rather than an incubator which has helped as it feels more 'normal', I can pick him up whenever I want and it's easier to do his nappy changes etc, I feel a lot more involved.

I also know what you mean about people focusing on the end goal - I want to put out a statement saying 'please do NOT ask me when he'll be able to come home!', it really is a day at a time, and all the little goals in between. I'll be so happy the first time he goes 24 hours without vomiting a feed! And it has to be at his pace, all the questions make me feel like people are rushing him, he'll do it when he's ready. I also know I'm being unreasonable as I'd probably ask the same things if I wasn't going through it myself.

We had a tough day today, I'm also finding the hospital environment tough. He moved to special care on Monday which is great but the room is really stressful, no windows and we are really crammed in - finding it really hard having no space and no privacy with him. We've also been trying breastfeeding which is proving stressful as he can't quite grasp it and is getting so frustrated, which upsets me as I feel like I must be doing it wrong. I know we'll get there with time and practice but I just wish we could fast forward so we can be at home! Oh and I forgot to give in my pumped milk straight away today and they had to throw away four pumping sessions worth!! I had to go for a walk to stop myself from crying.

Sorry for long post! Offloading after a tough day. It's my birthday tomorrow though so hoping we can have some nice cuddles and then I'm going to go out for dinner, really hoping tomorrow is a better day.

Hope your little one is doing OK @mummyloves09, keep sharing, we can get through this.

@snorkmaiden85 not to worry about the length of the post. I totally understand how you feel. Each day at time.

Forgot to add, Happy birthday I hope you have a great day @snorkmaiden85

Snorkmaiden 😭😭😭 about the milk!!! I once spilled a full bottle after pumping and I can safely say that there was a lot of crying over that particular spilt milk.

How wonderful that your baby is now in a cot. It makes all the difference being able to access them without having to physically open up the incubator.

Hi all,
If anyone is still there, Baby A was discharged 2 weeks ago and is doing very well. She was discharged weighing 6lbs 4oz.
Thank you for all of your support and well wishes.