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Premature birth

Connect with others and find premature birth support.

Original poster

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

674 replies

Supershiv1 · 23/04/2013 10:57

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.

OP posts:
Poppet45 · 07/08/2013 20:36

I think it was the chlorothiazide that was the troublesome one but anyway at least you've heard of zinc deficiency just in case. We hadnt and judging by the clatch of med students in to see us after the diagnosis I dont think it was something the docs saw much of either. As for O's latest curveball it sounds alot like reflux to me. Dd's came on around her due date and was so bad she'd go limp and grey too which filled me with terror at home. The acid makes them hold their breath :( Dd is still on omeprazole at almost 2 and me and her are dairy and soy free as she's intollerant to both and the meds dont work if either is in her diet. Gaviscon is pretty crap and can cause constipation so if it doesnt seem to be helping be assured you can ask them to try something more use. Reflux is a big premmie problem. Hugs

Poppet45 · 07/08/2013 20:46

Oh I see it was infacol.... Still pretty chocolate fireguardy.. Dd was a similar weight and gestation when she went on omeprazole and a bit later I realised it was cmpi and I had to remove dairy and soya from my diet (at xmas sob). Reflux is horrid ness itself but it can be managed. Good luck x

clabsyqueen · 07/08/2013 23:07

I remember a nurse telling me that the worst setbacks often happen just before discharge actually happens. I know that my LO was back in intensive care after almost being out of the door after an 11 week stay but then she was home after 2 more weeks. Hope this a short-lived setback.

TwentyTinyToes · 10/08/2013 06:33

Just checking in to see how Oliver is doing? Hope the latest setback is only a minor setback. Had a look at his photograph on the facebook page, he is gorgeous! Thinking of you.

ClenchingPanda · 10/08/2013 23:48

Hi Shiv, how is Oliver doing with his oxygen requirements now? This rollercoaster ride you're on has so many ups and downs. Just wanted you to know we're thinking of you.

Original poster
Supershiv1 · 12/08/2013 00:24

Hi.
Oliver's o2 is now settled around 42% ~unless he's unsettled (ie windy).
The doctors are talking about more steroids and have told us to not get carried away with bottle feeding as he needs to concentrate on his breathing.
They have said if he comes home they are positive he will be on oxygen and with some sort of feed tube.
He's now 5lb 10.5oz but the doctors still describe him as fragile.
Now he's 2 weeks past term he's looking for stimulation and all I want to do is take him for a walk and show him the world outside. It's hard enough trying to wind him with the cpap on (which also contributes to the wind).
After 17 wks & with no real end in sight I feel like I'm slowly loosing my mind. He has to be able to cope without cpap for 4 hrs before we'll be transferred back to our local hospital and he's had no time off since last week.
I feel he expends all his energy on crying and straining because he's so windy - when he needs to save it to get strong. It's a vicious circle.
One of the other babies from hdu has been rushed back to intensive care today (has done comparably better than Oliver so far) and I think it's made me twitchy. X

OP posts:
KateCroydon · 12/08/2013 04:40

First of all: YOU ARE STUPENDOUS. Hats off for coping this well.

Second (and forgive me if it's a dumb idea) how about reading Oliver poetry? Hearing the sounds might be interesting for him and something like Shakespeare's sonnets might help keep you sane because they'd fill your mind with something different and beautiful.

evelynj · 12/08/2013 06:07

Shiv, you are doing great. Reaching term date is another milestone and you should be proud but obv it's hard as you want to take him out. Keep taking a day at a time-we're all thinking of you

I think the poetry is a lovely idea, or even something rhythmic/rhyming-dr Seuss or Julia donaldson books.

High contrast Pictures are good for them to look at-there's a simple baby faces book but you could just draw some thick black shapes on White paper for him
Keep us updated x

HappySmileyFace · 12/08/2013 11:42

Thinking of you Shiv -this journey must be so tough for you. Just know many people are here for you and sending you positive thoughts.

mymatemax · 12/08/2013 13:30

What a long way you have all come. I know you want to show him the world outside & feel like you are missing out on doing the normal things but you are sharing this amazing journey, its not one you chose but it is unique to you.
He has done amazingly well & on crap days that's hard to see, it really is a rollercoaster isn't it,
Its hard, you want him to eat & grow but also need time for his lungs to recover & the wind doesn't help.
When Oliver is resting you need to rest, easier said than done I know but YOU need to be well for when Oliver comes home... it wont be long now :)

dinkystinky · 12/08/2013 21:22

Shiv - big hugs to you, dh and Oliver. You're all doing so well to keep hold of your sanity in this roller coaster ride you are on. The world outside isn't going anywhere. Keep taking it one day at as time - Oliver loves to keep surprising the drs so who knows what he will achieve in the future. Come on Oliver - your army is willing you on!

Re stimulation for Oliver - sock puppets (black, white, brightly coloured) may be worth a go - they kept my oldest boys entertained for a while when they were small babies - and a good excuse to use silly voices and make up silly stories without looking like a total nut job!

Am keeping my fingers crossed that the latest setback is soon overcome by Oliver and he reaches the 4 hours off cpap that means you can all move that step closer to going home. You all remain in my thoughts and prayers. Come on Oliver - you can do it x

Thinkingofmyfabfour · 13/08/2013 10:03

shiv you are doing brilliantly, and it's normal to feel like this when things don't seem to be going well. Oliver has made huge progress and each day is a day closer to taking him home. How about singing to him? And if possible holding him and gently swaying while you sing? I always find singing cheers me up if I'm having a bad day and babies seem to like it too
Hang in there and take it one day at a time X

MiaowTheCat · 13/08/2013 11:46

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Supershiv1 · 13/08/2013 22:25

Oliver had to be neopuffed this morning as he desatted down to 20 & wasn't responding to 100% oxygen. But he was awake and looking at us the whole time?? And didn't really go blue. It seemed to coincide with a particularly loose bowel movement but I had horror visions of him being reventilated and I know it won't bode well for our consultants meeting tomorrow. He had such a lovely day yesterday and his o2 was down to 38%. It really came out of the blue so ee are also waiting on a crp check (infection).
He's now back to around 50% o2.

Thanks for all your kicks up the bum - they do help, as does being able to write down what's happening.

Ps oliver weighs 5lb 14.5oz xxx

OP posts:
Fizzyfuzzy123 · 13/08/2013 23:40

Love to you and your Oliver. He seems like such a strong little fighter and you are doing amazing in there. I know it doesn't help but I remember the nurses saying to me in Scbu that one day they may move forward but take a step back the following day . It's the moving forward though that shows they have the fight in them! He's. nearly 6lb now that's fantastic. Love from me and my little Oliver x

HaveIGotPoosForYou · 13/08/2013 23:48

Although he didn't have complications except his blindness, my DF was born at 24 weeks old and weighed 1lb too.

It was in 1987 too, so quite surprising that he managed to live to tell the tale. They were obviously very concerned as he was so small/premature and very rarely did babies at this time of that gestation manage to survive.

He spent the first 3 or so months in NICU and his Mum couldn't hold him for weeks and weeks. Hearing the stories his aunt and other family members have told me about him then makes me want to break down and cry!

Not sure what these abbreviations mean in our post but presume they are relating to either the heart or the brain. Although DF had nothing wrong with his brain or heart, he did have a hernia which they had to take out and he was also blind. Otherwise he was fine.

Pleased to say now he is a 26 year old, 5''10' bloke who is muscular with a bit of extra weight who can pick me up and I'm certainly not light. I know it doesn't mean much but it shows that babies can come round in these situations. They can be a lot more resilient than you can possibly imagine.

I have Oliver in my thoughts though. I hope soon he will be progressing better on his own and in time you can take him home. Even if he does have SEN I am sure you will love him with every fibre of your being.

dinkystinky · 14/08/2013 07:49

Shiv - wishing you all luck for the consultants meeting today and hope Oliver has a stable day today x

TotallyEggFlipped · 14/08/2013 08:39

Good luck with the consultants meeting, Shiv.

mymatemax · 14/08/2013 18:06

Shiv, sorry to hear another setback, good to hear though that he looked so well during his "episode".
I remember the nurses telling me how they have to react to the numbers but how the baby appears is always a better indicator.

He does seem to be following a very similar path (as far as lungs & o2 needs) as my ds2 & it really only improved once his reflux was under control.
Something will be causing Olivers de sats they just need to get to the bottom of it... or he could just need more time. Take care

IKnewHouseworkWasDangerous · 14/08/2013 19:40

Good luck for tomorrow. I hope there is only improvement on the horizon.

HaveIGotPoosForYou · 14/08/2013 19:55

Oh and was stupid and half asleep when posted last bit so hadn't checked the most recent posts, but glad he's making a slow but steady progress. It's sometimes one step forwards, two steps back.

I am glad he's putting on weight though - that's a really good sign.

Just stay strong. Doing a lot better than I ever could've in such circumstances.

Original poster
Supershiv1 · 15/08/2013 08:43

Had the consultants meeting. Oliver has started viagra as he has pressure in his heartffrom working hard to breathe.
They're looking for his o2 requirements to come down. He's at 39% now. He's having no time off cpap until another echo is done in a week or so to see if it's made a difference.
If it doesn't yhe consultants have said we will need to make some difficult decisions and talked about feed tubes and tracheotomy. :-(

OP posts:
dinkystinky · 15/08/2013 09:24

Shiv - big hugs. That must have been super tough to hear. Am willing Oliver to react well to the Viagra and praying for his O2 requirements to come down so you don't have to face those difficult decisions.

IKnewHouseworkWasDangerous · 15/08/2013 09:30

The cpap thing could be positive. It gives Oliver a week to recouperate without being "tested". I have everything crossed that the viagra works like a dream x

MightBeMad · 15/08/2013 09:34

Oh shiv, huge hugs to help you through these latest ups and downs. I'm keeping everything crossed for you that Oliver responds well to the Viagra and is on the up again very soon x