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 bugger supershiv, I am sorry to hear about the backwards step. More painful than slow progress in my experience. My LO had to go back to nil by mouth and back into intensive care for 10 days after spending 8 weeks in hospital as she had the dreaded NEC. I climbed the walls and shouted 'NO I'M NOT!' at any who asked me if I was ok. Going home suddenly seemed like a lifetime away and I suppose it did set us back by about 3 weeks. Painful. Thinking of you.

Sorry to hear Oliver is back on the vent,you are not back at square one as he is much bigger and stronger than he was back then! After 14 weeks in hospital both of my twins were reintubated after developing an infection. 2 weeks later they were off and back on nasal cannula.
I tried to remember that as quick as these babies get sick, they get better again. It really is a rollercoaster, there's no other way to describe it.
Keep your chin up, and just keep 'plodding along'. But as others have said, make sure you look after yourself too x

Just delinking to say thinking of you both often, hope you are bearing up ok.

Love and support to you all, your little Oliver sounds like a real fighter. I'll hold you in my thoughts.

Been thinking of you and Oliver Super, sending support and positive thoughts to you x

Thinking of you and Oliver. How's he doing? Hopefully the rest will do him good.
Yell as much as you like, I remember the day they thought Alex was sceptic a dr came in and said all cheerfully 'hi mama are you ok today?' My response was something all the lines of 'what the fuck do you think?!' Only not as polite

Hi I've been following your post. I had an Oliver too at. 33 weeks and I was besides myself so I can only imagine what you are going through. Oliver's are strong and he will get stronger. Sending love to you both x

Hope things are better today x

Hi.
Oliver has had 2 blood transfusions in 4 days (par for the course really). They think he may have conjugated jaundice and are running some TORCH tests.
Overall plan is to try to wean him from the ventilator again, if that doesn't work another lot of steroids is on the cards.
He managed to have his first ROP screening today without throwing a diva strop.
His gases are better since the transfusions so might be able tohave cuddles tomorrow. .
The sun is shining and I feel stronger today - thanks to being able to vent on here and the support you provide. Xx

Hello

I've only just found this thread and I've tried to read most of it, but I wanted to offer you a story of hope.

Back in 1988, my brother, was born 1lb 7ozs at 25weeks gestation. He was born in a hospital without a SCBU and had to be transferred from Essex to Hammersmith. My mum tells me that his heart stopped beating 3 times on that journey.

My mum and brother were the first "subjects" to try out kangaroo care (skin to skin) at Hammersmith, after doctors there had returned from a research trip to Cambodia.

My tiny brother had his ups and downs over the next 6 months. Doctors repeatedly told my parents that he would be severely SN/never talk/never walk etc etc

He was late in his walking and talking, but 25 years later he is a healthy happy adult. The doctors predicted wrong.

I just wanted to share my family's story, and offer some hope. Technology and medicine has advanced so much in the last 25years, I hope that these advances will help your DC thrive and grow.

I will continue to watch this thread, and to keep you and your family in my thoughts

Late to this thread but thought I would just offer my support on here having gone through the NICU experience twice with both my boys at separate times and one of them shares the same name.

He was 1lb and 4oz when born and I thought it was terrible. What's worse it was Christmas time so it was hard to get support and staff were minimal until new year to support us. He went through many ups and downs and I sat crying at home often about what could go wrong. But like yours he was a fighter and despite all the setbacks and the tests and the near misses was discharged near his due date and came home with us.

10 years plus on he is a strapping lad, more than caught up with his peers and has now real difficulties. Indeed when I do comment that he was a prem baby people look at me with amazement.

My suggestion is all the useful comments above but also make friends with the other parents in NICU as they are your support network also. I found the anti natal group great but they didn't really get the effect a prem baby had and were about to start weaning their babies when mine was just coming out of hospital. Try to write it down and also get very clear answers to your questions from the staff. They have little targets at various stages that will give you and them an idea of progress and achievements. Each one is a step closer to the door!

Enjoy Oliver and this time will pass quicker than you think and you will forget how tiny he is. Congratulations on the breast feeding by the way. It's not easy.

Good news that the transfusions are helping. I hope you get cuddles tomorrow. I'm glad the sunshine is helping Are you getting enough support with travelling, expressing and all the rest?

Can I ask does Oliver have a PDA? I'm just curious, my DS had one and didn't make any progress with his ventilation until it was sorted. Apologies if it's been mentioned and I've missed it.

Hi celtic yes oliver does have a pda. He had another echo today to double check that it hadn't got bigger (if it had it would be surgery). It hasn't so it's as you were in that respect. I think they are checking everything possible before resorting to steroids again to make sure he has the best chance when off ventilation.
Thank you for the stories and advice they do help.

Ah I see. My DS had the surgery before they tried the steroids but they said his PDA was huge. Glad it was good news from the echo.

I forgot to say, DS had conjugated jaundice too. I can't remember what they did about that though

Supeshiv, ds2 also didnt make any progress with breathing & continued to need frequent transfusions until his PDA is sorted.
They treated his PDA medically, fortunately it worked despite the doctors doubts (aparently they left it longer than usual before trying the medicine) so we were able to avoid surgery.
Hopefully he will be back off the vent before you know it.

On our last day just before discharge at hospital my LO was diagnosed with a double hernia in her groin and conjugated jaundice. I ran out clutching her shouting they were not having her no matter what. 95 days was enough! The jaundice needed LOTS of supplements for about 5 months and regular trips to kings college hospital liver centre, it eventually resolved. The hospital will just add these supplements to his daily schedule I should think. It must seem like one thing after another a d indeed it is enough to break the hardest if folk. Thinking of you

Hi I hope you got your cuddles and Oliver is improving. Still thinking of you both, sending strength and willing you on xxx

Hi mama, I haven't had cuddles. As I went to get changed into my cuddke top he had a bad gas. :(
But his pressures have been reduced as he's had better ones since. Hopefully cuddles today?? X

Hope you get a cuddle today x

shiv hope you and Oliver got a cuddle today.

Just saw photos today of my first ever cuddle with BG. Couldn't believe how tiny his head was...

Here's hoping for cuddles for the two of you, too.
And reduced vent pressures with maintained gases x.

I kept one of DS2's first hats (the one I knitted - took about half an hour...) and it looks like an egg cup now .

Sending you love and strength OP! I'm on my phone so can not paragraph,sorry! Sorry your in this terrible situation but I couldn't read and run without telling you to hold in there and be strong for little Oliver. I had my dd at 32wks, 3lb 10oz, had a duplex kidney and had 2 bleeds. Every day I watched her become stronger, my story by no means compares to yours but I'm sitting here watching my now 2yr old dd shouting around running around. She didn't walk until 23months and she's still abit behind BUT everything I went thought was totally worth it! Stay strong for Oliver, he will become healthier with time, enjoy your cuddles tomorrow and I'll be thinking of you and your little one :)

Hi I hope you got your cuddles yesterday/today and Oliver's gases are improving. Thinking of you x

How are you doing shiv. Thinking of you, MrShiv & Oliver. X