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

(640 Posts)
Supershiv1 Tue 23-Apr-13 10:57:01

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.

thomasmad Fri 10-Jan-14 23:21:41

Hi Shiv,
Have been thinking about you and your family and hoping you have enjoyed a great first Christmas. My boys were 28 weekers so further on than Oliver but they did suffer from terrible reflux ( 4 x 2 changes of clothes a day!!) so I do know about the trials and errors of feeding. I weaned early and shut up all the people with "helpful advice" by stating quite truthfully that it was on the advice of our Paeditrician. Strangely enough they are the heartiest eaters four and a half years on and are much less "fussy" than my eldest one, so every cloud ...
Hope Oliver continues to do well and that you all have a very positive start to 2014. Well done!!!

HappySmileyFace Fri 03-Jan-14 11:19:33

So happy to catch up on your thread and see what great progress Oliver has made! Woooo hoooo!

Supershiv1 Mon 30-Dec-13 22:01:54

Hi.
yes all good. Feeding isn't great and trying to wean him so we can increase his calorie intake (happening very slowly).
In 2 weeks he'll be 9 months old.
3 days ago he should only have been 5 months xx

Djwkin Sat 14-Dec-13 12:48:15

How is Oliver doing now?

Supershiv1 Wed 27-Nov-13 23:19:05

Hi multiple, I lurk on your thread too xx

MultipleMama Tue 26-Nov-13 14:11:16

Decided to stop being a lurker and comment. Rereading you're thread has gave me hope for my little boy.

Congrats on having, Oli home. Hope everything is well, and you're enjoying home life! xx

carovioletfizz Thu 21-Nov-13 09:35:11

Have followed this thread shiv, so happy for you you have your wee boy home smile have sent a request on fb btw (Caroline) xx

chocolatesolveseverything Thu 21-Nov-13 08:12:36

Brilliant news about Oliver. I hope you settle down into a happy family routine soon.

TwentyTinyToes Tue 19-Nov-13 20:00:46

So pleased to read your latest updates. Go Oliver - what a superstar grin

kaymondo Tue 12-Nov-13 21:58:35

Just found this thread as it popped up in active conversations. Amazing story, had me in tears and I'm so so pleased for you that Oliver is home. X

MyMotherHadMeTested Tue 12-Nov-13 21:19:31

Wow congratulations, hope all is well in the Shiv household!

Silver15 Mon 11-Nov-13 22:04:15

Great news Shiv. Wish you, mr shiv and Oliver the best.

5madthings Mon 11-Nov-13 15:02:45

Whoop whoop! Longtime lurker here, have been thinking of you and Oliver often, so glad he is coming home! grin

Best early Xmas present ever!

hedwig2001 Mon 11-Nov-13 14:59:57

Hi Shiv, long time lurker popping in to say congratulations.
If you have an android phone or tablet you might find this app useful for managing Oliver's meds.
https://play.google.com/store/apps/details?id=com.earthflare.android.medhelper.lite&hl=en_GB
It reminds you when drugs are due and can monitor your supplies, so you know when to get a new prescription.

thomasmad Mon 11-Nov-13 11:34:18

Hi Shiv and family,
So delighted for you!! I haven't been able to track him down on Facebook as I don't use it and am a bit of a technophobe!! but it sounds like he is doing brilliantly. Hope you get some time to really enjoy Oliver and spend normal time together doing all the things that other people take for granted. Here's to hoping for a fantastic Christmas together and a less stressful winter. Take care xxxx

NewToAllThis11 Mon 11-Nov-13 11:20:59

Congratulations, Shiv - amazing, amazing news that Oliver is coming home today! Am so pleased for you. I second what everyone else has said and do pm me if you want I ask anything etc - my son was a 27 weeker, born a couple of weeks before Oliver. He came home oxygen and is still on .2l. I know what you mean about not getting much sleep at the beginning, but don't worry if you check him 100 times a day. If that makes you feel reassured, then do it.
I'm sure you have but make sure you get the paediatric cylinders from the O2 company. They are a lot smaller and easier for putting under the pram etc. but the nurses didn't mention them to us (?!) so we didn't have them for a few weeks.
Enjoy and well done! Xx

Mama1980 Mon 11-Nov-13 11:18:37

Just read your last post properly, my ds1 came home on O2 And masses of meds as he was waiting for a heart op. I found lists of everything helped massively, I could keep it clear and tell the nurses etc exactly what he had had and when, as my Brain was pretty much fried.
But as you say above all enjoy having him home, I swear I didn't put mine done for months after they came home grin
I'm thrilled for you and hope today goes smoothly x

Beginningofthejourney Mon 11-Nov-13 10:56:38

What brilliant news Shiv you have all been amazing during the past 7 months, time to enjoy being at home as a family! Hope you remember what I said in my pm a few month back if you feel you need some support over the winter. As the saying goes today is the 1st day of the rest of your life! smilexxx

Christelle2207 Sun 10-Nov-13 23:07:44

Thats such brilliant news to hear. I had my baby boy close to oliver's due date and have been following your story since your first post. Hope you enjoy your little boy as much as I do mine x

Mama1980 Sun 10-Nov-13 22:11:15

I just saw your post on multiplemamas thread I didn't want to hijack, sorry I haven't been able to post much, it's been crazy here. I am so so thrilled to hear Oliver can come home tomorrow! What a little superstar X

Supershiv1 Sun 10-Nov-13 21:22:08

Thanks lotsofcheese for the chat offer.
Abz - smelly dog is very confused, especially the noises oliver makes. Oliver is not phased by smelly dog at all.

So since I last posted we had Oliver stay at home overnight last Saturday. Exciting but not much sleep for me. Different story for him - he slept 9-7, but I was waking up/sleeping with one eye open to make sure he was ok and his oxygen cannulas didn't pop out. We had an emergency sats monitor if we felt the need (we didn't).

Oliver is due to come home for good TOMORROW! !!!!!!
Am nervous and excited and terrified and and and waaaaah! It just feels like these past 7 months I've not dared breathe out and I'm still a little bit scared to.
He's coming home on .3l of o2 & lots of meds, but the scariest thing is he's coming home in the winter.
Oh sod it. I need to stop worrying and actually enjoy my beautiful beautiful baby boy.

Your support has been amazing and I can't quite believe what comfort I have found in strangers and how you have kept me going.
Many thanks, although this isn't the end, it's just the beginning xxx

SundaySunshine Wed 06-Nov-13 10:14:56

Yay Oliver!! grin grin

Oh Shiv, congratulations, what a momentous day xxxx

lotsofcheese Sat 02-Nov-13 18:21:22

That's great! It must have been so emotional having him at home.

Hopefully home for good will be on the horizon very soon.

If you ever want a "chat" with an online stranger, please feel free to PM me. I had a home oxygen baby too (a 29-weeker who weighed in at 720g). Sometimes things about the neonatal experience hit you hard when you get baby home, and home oxygen can be an isolating experience. The door is always open! Xx

cheekbyjowl Thu 31-Oct-13 23:16:14

hooray grin grin grin grin grin grin

Beginningofthejourney Thu 31-Oct-13 20:02:41

How exciting, hope you are all home together very soon x

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