How did you make it through the NICU?

[AuntBug]

I'll start off by saying I know how incredibly fortunate I am. I read your stories and talk to other NICU parents and really count my blessings.

My LO is 18 days old, was very SGA at 2 1/2 lbs at 35 + 2 weeks, but she's done amazingly well. We've been on the slow journey of "feeding and growing".

I'm fine in the morning when I'm getting ready to go to the hospital to see her, but I lose it at night. I just want my baby home!

How did all of you preemie parents manage this time, many of you who had much more difficult journeys. I feel selfish, but sometimes I think I just can't stand another day.

 

[mummy3]

I'm sorry hun. There's no easy answer, just one day at a time. You must be getting close to the end of your NICU journey now and soon she will be home and time will fly by and the hospital will seem a distant memory

 

[ermm23a]

Just take it one day at a time. Your little girl will be home with you before you know it. Just know that she is where she needs to be right now. She is in the best place for her at this point in time. It is one of the hardest things you will ever have to go through, and people who haven't gone through it won't ever really understand.

 

[Lottie86]

I think everyone manages it in different ways. For me personally I think it's just a combination of adrenaline and autopilot. I think I'm likely to do the whole crying thing once we get her home whenever that might be.

 

[Marleysgirl]

I'd agree with Lottie - adrenaline and auto-pilot is a good description. We just kept going, and kept going, and kept going, until Andrew eventually came home.

 

[katy1310]

I definitely agree with Lottie and Marleys Girl. When people ask me how I did it, my honest answer is always that I just don't know! We actually found the last part the hardest. When Sophie was first born, we knew we were looking at probably at least 13 weeks stretching ahead, maybe a bit more, maybe a bit less, but we knew it was going to be a long time. I'm not saying it was easy, not in the slightest, but we knew we were in for a long, tough journey and we were prepared for that. But then by the time she got to special care and was off most of her monitors and learning to feed, but still not quite there yet, we found that so, so hard. It was knowing we were so close, but not knowing just how close to getting her home that was the hard part. We used to miss her so much at night - the thought of our little baby being 60 miles away from us was just so awful. I just ached to cuddle her at night. I don't know if full term parents believe me when I say this (I know you preemie mummies will understand), but when I'm up with Sophie in the night, I never mind. I just sit cuddling her and thinking how lucky we are to have her, and I think back to the time when I wished I could be the person to look after her in the night rather than the neonatal nurses. Last year I'd have given anything to be sitting with her in my arms at 2am, rather than expressing into a bottle with no baby in the house!

You will get there - like someone else said, it's one of the hardest things you'll ever do, but it will pass. I hope she's home soon. xxx

 

[ShadowSeer]

My LO is still in NICU aswell. Im finding hard to stay positive, and seems as though its going to last forever (even though I know that it wont).

We had a bit of a downturn today, and it shocked me. For the past 4 weeks she has been doing really well, and for her to suddenly take a back step, it really got to me.

Im trying to just stay focused on each day, and keep looking to her due date (which isnt that far away) since thats when she will most proberly be comming home.

Hope u get your LO home soon. Good luck!

 

[AuntBug]

I hope Savannah comes home soon as well!

Taylor's due date is two weeks from today, and I'm hoping to. Have her home by then. She weighed 1430 grams today, so we're on the right track!

 

[Lottie86]

I hope Savannah's setback isn't too serious and that she and Taylor are both home soon xxx

 

[AuntBug]

Hi Lottie - I just realized Iona is also still in the nicu, correct? I hope she's home safe and sound shortly as well I know none of us have any other choice, but I'm so amazed you've been doing tis since mid-June

 

[Hotmum]

Man, its hard hunn my lo only stayed for almost 6 weeks, but it was loooong 6 weeks for me
i remeber pumping and turning the crib mobile on to hear the little music and cry blaming myself to be doing that to her( we alwaaays blame ourselfs, but dont worry when it is all over you will understand that wasnt your fault at all)
after turning " that corner" in your way home everything will be just fine
try to focus on the baby and be strong. It may seem forever but when its all over you will have her in ur alms ))

hugs sweetheart if u need to talk, cry, or anything u can add me

 

[AP]

I don't know how, but I really did just 'get on with it' from the start. The first few nights at home were probably the most horrific that I could ever recall, I lay in sheer fear of my phone ringing. But once she was growing and such, I accepted that this was just the way- I didn't know it any other way.I just thought "right, she's here, she'll get better, we'll go home, and that's that" I did take it pretty well and I didn't really dwell too much.

 

[PleaseBaby]

Amelia was in for just over 9 weeks and came home a month before her due date. I just focused on her due date and anything before that was a bonus. My situations a little different because my first baby was stillborn due to the same problem Amelia had. So it was always in the back of my mind what the alternative to her being in SCBU was so I never really inded. Her being alive was good enough for me.

It did get alot worse just befor eshe came home though. My SCBU was terrible and I din't trust them to look after he properly, it got to the point where me and oh did shifts so one of us was always there x

 

[AmandaAnn]

Tonight is the first night I left my boys at the NICU and like someone else said, so far it's just constant terror of my phone ringing. I know they're where they need to be but it just seems like the most awful thing. I guess we just forge ahead day by day.

 

[AuntBug]

Good luck AmandaAnn. That first night was really hard, and I was still so exhausted from her birth. Hope your twins come home soon.

 

[LonelyAngelx]

so sorry hun, i know how your feeling, when my daughter was in NICU (31 weeks Gest) i hated the day i had to go home and leave her in there, felt like id had her taken away from me but i knew that was the best place for her anyway id see her twice a day to express milk for her and id spend hours with her, but when i had to go home aspecially at night it really really broke my heart, there were times id cry cos i wanted her home... but it got easier , aspecially when doctors gave me a date when she could come home with us and i got more excited and finally i got to take her home and was very protective of her shes 13 months old now and such a little madam!
I Suppose you just got to take everyday as it comes, i know its easier said than done but try not to think about it too much think of when she will be home make things easier for you... if you need any help hun.. im glad to help you

 

[Srrme]

I took it one day at a time. Having my husband along side me helped a lot. Like you, I would lose it at times too, and I cried almost every day. I hated leaving my baby at the hospital every day.

 

[Poorah]

It's so incredibly hard.

Like the others, I didn't cope as such, just got through each day. I found crying when it all got too much helped to relieve the stress, as did doing some limited baby shopping (nice blankets for cuddles out of the incubator, a nice box for her hospital thigns etc).

I also spoke a lot to the other mothers in the unit; I have lots of friends with young kids, but none had anything close to my experience and it was obvious they were being careful around me. I didn't have to explain everything to the mums on the unit as they already understood.

 

[nineena]

I still cant think now how we coped and every time Ella goes back into hospital i dont know how we cope. I think Lottie nailed it on the head with adrenaline and auto pilot. I'd love to say it gets easier but i think you just need to take each day as each day and its another day closer to your LO coming home and before you know it 12months will have flown past and you'll be sat here looking back through these posts thinking how on earth you coped but you did xx

 

[vermeil]

Just take it one day at a time. Your little girl will be home with you before you know it. Just know that she is where she needs to be right now. She is in the best place for her at this point in time. It is one of the hardest things you will ever have to go through, and people who haven't gone through it won't ever really understand.

That`s exactly it, thank you ermm23a for describing it so well.

There is no right and wrong way to deal with the nicu. We do what we need to, run on auto-pilot and adrenaline (ha sooo true!) until the days all blur together and realize a random day that - whoah - our baby IS going to come home some day Soon!

I admit my experience was rather different - to use an extreme example, the other mother in my hospital room cried her heart out for hours because her son had jaundice and had to stay in the hospital for.... 48 hours. It was clearly excruciating to her to go home without her baby. I was secretly angry at her. My son was struggling hour by hour to survive. I`ll skip the sad details but for a good two weeks until he became stable I just went into full survival mode myself, repeating over and over `please just make it through one more day with me` etc. I just wanted him to make it. Bringing him home some day was something dreamlike that I would probably never get to do.

I attended preemie parent meetings and again I secretly resented the mothers who bawled because they had to leave their babies in the hospital for a few days. I was told my own son would probably be severly disabled. I thought long and hard about it. Was their suffering as valid as mine? Of course. Was I right to secretly resent them? Not in the slightest. After a few weeks my son was finally getting better and I started to regain a bit of my own perspective. I wasn`t that badly off after all - a quick trip to the loss section of bnb was a pretty big reality check and reminded me to get off the self-pity wagon and start preparing his coming home. Fast forward a year and those 100+ days in nicu made me rethink many aspects of life. It really does change your perspective on many things.

Don`t want this to turn into a philosophical debate so I`ll stop here but really, it`s hard to explain the nicu to those who haven`t lived through it. No one should apologise because their baby was in the nicu 'just' a week. Even one day is too many. These small beautiful babies are soooo wanted and loved that to be apart from them is just heart-wrenching.

Practical advice - what really helped me was to have ONE person be the contact for news. I would give my mom some news twice a day; that in itself was hard enough. In turn people would contact her and ask for news. I personally just couldn`t deal with speaking with anyone else but her and my husband. I know others found it helped them through it, but to me I just wanted privacy and some breathing room.