Currently in NICU with 1lb 25wk very sick baby boy.

[Supershiv1]

How do I cope??
Have googled but I can't find comparable stories. All others involve babies twice the weight.
Am struggling to be sure I am doing the right thing putting my baby boy through all this.
He has grade 4 IVH & grade 2 so have no idea of quality of life at the end of all this.
Having said that he has fought for 10 days so far. The other parents in NICU have heavier babies and not the bleeds so feel like their problems are trivial compared to my baby boys.
I feel very weepy even though I am trying to put a brave face on.
How much more can my baby boy take? I can't hold him and I just want to tell him it will be ok but I don't know that it will.

Oh such great news, well done Oliver! Are you getting to have more cuddles now he's off the vent? It took Alex ages to come off Cpap and he started breast feeding while on it but its a great sign. Thinking of you often x

Great news supershiv! CPAP is a step closer to home. Another poster mentioned trying not to worry about desats and bradys as getting older helps those. I second that. Maturity was the only thing that made a difference to my LO in this sense. After spending 12 weeks watching monitors I can tell you I was shocked to realise I had forgotten all about desats and bradys until I read your posts. You too will forget them one day!

Hi. Some of you obviously know the NICU lingo - that reassures me in a funny way - ie you've come out the other side.
Oliver is 7 wks old yesterday (32 wks) & 50 days old today.
He went back on Bipap yesterday as he had some bad gases. He's now on most support Bipap can give without reintubation (I.e. back on the vent).
He was weighed as well as is now up to 926g.
I had him out for skin to skin for nearly 2 hrs on thursday and his sats went amazing and oxygen requirements reduced. That's why it's disappointing that his gases are now bad and I couldn't cuddle again today.
His brady's seem to have returned (although not as extreme) & one minute he's binging 100 on his sats and then down to 65 with no apparent reason.
Feeds do seem to be a trigger so need to eliminate reflux. He also gets very annoyed when he has poohed!!
Also concerned that it may be the steroid effect come down and all his good progress was artificial and to do with the steroids.
Watching other babies come and go is quite difficult, whilst we live what seems our own groundhog day.

Out of interest were everyones prem babies born in hospital?
Oliver wasn't you see and I didn't have chance of any steroid injections. My waters broke in my bathroom and he arrived before the ambulance did. OH had to use CPR on him. We didn't actually know he was alive until we'd been at hospital for about half an hour. His core temp gad dropped and they had to use 2 lots of adrenaline to get him going - hence why we have had so many room of doom discussions with doctors.

Supershiv, wonderful progress (even with the up & down bits) it is horrible when your child is the sickest baby in SCBU, but that will change.
DS2 was born in hospitla but rather unespected emergency c section so no steroids or anything.
Even when ds2 was off the vent & cpap and just on o2 at 2months old his massive desats only settled when they started treating him for reflux.
He also couldnt poo & was constantly needing supositries to give him a clear out as he was too full & again all upsetting his O2.
DS2 is 10 now & still renowned in our house for the biggest poos :)
Steroids can be given again, if they help dont see it as a backward step.
DS2 had a couple of spells back on the vent & cpap with a collapsed lung, it felt like the end of the world at the time but it was just another step in getting better & home.
Keep taking it day by day & enjoying that skin to skin when you get he chance.

He's had gaviscon added to his feeds today and is having transfusion today. Lets see what happens next.......

Hope you and Oliver get some more skin to skin soon
X

Hi Supershiv. Just want to add my support.

My nephew was born at 23 weeks, not in hospital. He spent 5 months in Nicu and has just gone home. There were no steroids before he was born. Just wanted to let you know that.

Good luck and will be thinking of you.

Also wanted to add some support here.

A long time ago for us now, but DD1 born 875g at 28 weeks, smaller and weaker of twins, losing her brother the following day to a strep infection that fortunately did not cross the placenta,

Also needed adrenaline to get going, fully ventilated for 10 days and the next few months on CPAP. I Did have the steroids pre-delivery, but don't think they got to her. Infections, tests, bradys, bad gases, transfusions went through the lot. Got used to taking one day at a time, frequently two steps forward one step back.

Finally kicked the oxygen and came home after a total of 110 days in hospital. A strapping 7lb by then. Apart from a bout of bronchitis aged 2 (which may not even be prem related) no other breathing issues,
The only telltale signs of being prem are the tiny little dots on her hands and feet if you look real close.

So a long haul, but a very happy ending here.

Shes nearly 16 now -just about to nag her do do some GCSE revision....

Thanks tickle (great name btw)

Thanks circular, max, mama everyone actually.
Apparently there's been talk of bradys on Corrie as well!

Haha Circular, ds2 has the SCBU spots on the back of his hand & a scar on his foot where his long line went in.
He also has scars from his chest drains but they are well faded now.

I am quite fond of DS2's scars on his feet and arms; I consider them wounds won in honourable battle - I suppose that is only something I can say now because I know the battle was indeed won.

I met a friend today whose baby was born early and v small (IUGR) a couple of weeks ago. Talking to her just brought home to me again what parents of prem babies go through.
Wishing you (and Oliver) strength, Supershiv x.

How's Oliver today? Have been thinking of you often.
I feel very much the same way about my and my children's scars, I am proud of them. They are vivid beautiful reflections of how amazingly strong my babies are. Battle scars to be worn with pride. Of course as pacific says its easy to feel that way once the battle has been won.
Sending strength and positive thoughts x

Hi. Oliver went back on ventilation today.
Feel back to square one and he looks knackered.
Had a bit of a blub today but ok now x

Oh, the ups and downs of a really ill preemie baby are just horrible (hugs)

Yes, going back on the vent might seem like a step backwards, but will hopefully give him a rest again. Breathing on his own is still hard work for him and he'll need more time. He'll come off it again in a day or two and might last longer breathing for himself then, you'll see. And he's most certainly not back to square one - he's 5 weeks older and stronger and has proven he knows how to hang on .

I so hope that you have lots of RL support - remember to eat, drink and sleep when you can x.

it feels like a step back but it will give him the rest he needs, it takes so much effort for their tiny little lungs to keep going all by themselves.

Have you been keeping a diary? Look or think back to day one & look how much progress he has made.

You are entitled to cry you are going through the most emotionally exhausting & scary thing ever.

Its a cliche but it really is a rollercoaster. Oliver is just recharging his batteries :) x

Oh super that is tough, I really feel for you. Crossing everything for him to benefit from a rest and come off again soon.

Thinking of you both and willing him on.

I've been thinking of you daily Shiv, what a soldier you have in Oliver.

I said up thread that my ds was prem and we only had a short time in nicu, so not comparable to your story but 18months down the line I remember two things mostly.

The first- Babies, however tiny, however poorly, are tough. My ds's consultant told me he would turn a corner and I'd know when he turned it. Such resilience, in built to cope and to pull through.

The second- medicine, technology, truly amazing doctors, nurses and consultants. I was blown away by all of these things and not a day goes by when I don't think of them all.
Please keep the faith in those people and the wonders of modern medicine.

Hopefully the two combined will get Oliver where he needs to be.

To even have gotten this far, after his home birth and resus is truly a miracle.

I will continue to think of you every day and I'm hoping and praying Oliver gets stronger and that he starts to have an easier time.

Hi again Super, I just want to echo other posters - it's not back to square one, it really isn't. I remember being told so many things by people trying to be helpful, "one step forward, two back" blah blah... But it's annoyingly true.

We had a huge set back at 35 weeks and spent 120 days in NICU/SCBU. On Day 3, I remember talking to another mum who was on Week 5 and thinking 'How am I going to do this?' But you do and you will. I was told I'd be sad when DD2 was discharged - I never even looked back.

I look at my daughter now, who is still tiny for her age, but walking, laughing, trying to talk and I can't believe I planned her funeral twice (sorry to be morbid, but we came close). Like others, she has soooo many scars, including two nasty ones from an extravisation injury. I agree - battle scars. She earned her spot on this planet.

Oliver sounds pretty amazing. The vent will give him time to rest, get a bit stronger and try again when he's ready.

I hope you are able to rest too. Look after yourself. I'll keep everything crossed for positive news xx

Hi shiv just popping in to say Hello, and that we are all still thinking of you and wishing the best for Oliver. It must be difficult to deal with the times it seems you're going backwards, but hopefully Oliver will make the most of a little rest and be stronger for it.
Best wishes x

Hope you and Oliver are having a good day today.

shiv I have been reading your thread but haven't posted yet, but now I just want to offer my thoughts and support. As others have said, prems are actually really tough (not to mention pretty original on how they approach life!) and every day is a triumph. Baby Goat went back on ventilation when he had a pneumothorax that accumulated twice and needed surgery twice. He is currently snoring loudly in his cot after a day driving the childminder demented with his insistence on trying to demolish her living room.
NICU is tough. Look after yourself too.

I hope things are going OK for you and that this is just a small setback.