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

(650 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.

JoEW Tue 23-Apr-13 12:18:37

Hi, I'm afraid my story isn't comparable but wanted to offer some support, it's a terrifying time but your little one is 10 days old and a fighter. One of my friends (who I met in NICU) had twin girls, born at 26 weeks, the smaller weighed 750 grams when she was born, both girls are doing brilliantly two years on, though they didn't have the bleeds and that must be such a worry for you. I sincerely hope that things improve for you and your tiny DS. You are doing the right thing by trying to help him and he will know you are there. He won't remember any of this when he's older. It's heartbreaking seeing them so tiny and all you want to do is wrap them up and protect them from it all. You will get to hold him soon. I'm sorry I can't help more but didn't want your post to go unanswered. Let us know how you get on.

Madlizzy Tue 23-Apr-13 12:21:12

I'll be thinking of you. Miracles can and do happen xxx It might be worth speaking to the special care nurses to see if there's an organisation you can be put in touch with.

AWhistlingWoman Tue 23-Apr-13 17:27:31

Hello supershiv

Congratulations on the arrival of your little boy. I'm so sorry to hear that he is going through such a difficult time at the moment. It is an incredibly tough time for everyone concerned and it is so hard to watch your child having the fight of his or her life and be able to do so little to help.

I had my little girl at 23 weeks, weighing 1lb 7oz. She gave us a few scares, including brain bleeds, but she is four years old now and doing really well. I did get to hold her after the first couple of weeks for short periods and I drew a lot of comfort from that. Hopefully it won't be too long before your son can come out for a cuddle.

It can be really tough to have the smallest and sickest baby on the ward, it can make everyone else's problems seem annoying. I remember getting really upset when another mum in the lift was complaining about being in the unit for two weeks. At that point, I'd been there three months and wasn't looking at getting out any time soon! I nearly bit my tongue in half trying not to snap at her! It's all relative but it does hurt to hear 'complaints' that you would love to have as your main worry!

You might want to check the Bliss website www.bliss.org and have a look at some of the stories there or take a look at the message boards. There are quite a few parents posting with very early and / or very small babies. There are also a few facebook groups for very small or early babies and there was an active yahoo mailing group for parents of babies weighing less than 2lbs - might we worth taking a look at when you have time?

Wishing you and your baby boy the very, very best.

motherinferior Tue 23-Apr-13 17:30:37

Thinking of you.

EyeoftheStorm Tue 23-Apr-13 17:48:48

AWhistlingWoman is right.

DS2 was not as little or early as your little one, but he did have grade 3 IVHs on both sides. What happens to one baby might not happen to another - there seems to be no rhyme or reason to it - but DS2 starts school in September and while I worry about him because he still seems very young, I could never have imagined being at this stage when he was in NICU.

Wishing you lots of strength.

Mama1980 Tue 23-Apr-13 18:17:31

Hi, my ds2 was born last December at 24 weeks, he had a scary time of it especially at the start, he had been ill in utero and I nearly died myself. It has been unimaginably tough but he came home three weeks ago and at 5 months old now weighs just over 7lbs he is doing great with no long term issues so far. Kangaroo care helped me through the most, to be able to touch him and feel I was doing something, anything really.
I am here for a virtual hand hold and will be thinking of you. Xxx

Queenofknickers Tue 23-Apr-13 18:28:09

Just wanted to say I'm thinking of you and your baby boy -thanksthanksthanksthanks

Wereonourway Tue 23-Apr-13 18:31:42

I'm thinking of you op.

I have no real words of wisdom, my ds was prem and battered and bruised so spent a short time in nicu but just wanted to say I'd be thinking of you.

Take each day as it comes, keep a diary maybe? It could help you to record milestones and look back to remind yourself how far he is coming.

Good luck, keep your chin up. In sure your little boy will continue to get stronger xxx

Just offereing my support too.

The most scary place on this planet must be NICU sad.

My best bit of advice is to really make an effort to look after yourself - that's not selfish, but a necessity; you cannot do much for your son just now (I'd imagine) on a practical level, but he will need you more and more the stronger he gets. It is emotionally and physically draining to worry about your tiny offspring and I am sorry that you and he are having to go through this.

Yy to Kangaroo care - as soon as possible nurture him as much as you can skin-to-skin. There is so much evidence how beneficial this is.

Like others have said, my preemie was not as small and not as immature, but I have looked after extremely early babies. Some of them don't do well and some do and they all have impressed me with their tenacity with which they cling to life.

It is not an easy decision to make whether to persue intensive treatment for a very premature baby, but it's the only shot he's got, isn't it?

Wishing you much love and strength. And eat chocolate wink.

NotSoNervous Tue 23-Apr-13 18:36:33

I'm so sorry you and your little boy are going through this OP. I don't have any advice but just wanted to hand hold and send you lots of positive thoughts. Please remember that miracles do happen and your little boy will know his mummy is close by xxx

Has anybody mentioned getting in touch with BLISS yet? They were a font of information and support when we were worried about DS2.

Gurke Tue 23-Apr-13 20:52:22

Just wanted to add my best wishes to the thread, and let you know I'm thinking about you & your tiny boy.

My DS was a little bit bigger than yours initially but lost a lot of weight in the first 2 weeks. The months in the NICU were a terrifying time, I really feel for you. But: he came home in November, and looking at him now I still can't believe how far he's come. Time and again I have marvelled at how strong these tiny persons are and how stubbornly they overcome gigantic obstacles in their path.

Others have mentioned keeping a written record, and in hindsight that really helped me too. I forced myself to write down a few observations about DS's progress (or large steps backwards) every day, together with any comments by nurses and consultants. It helped to get a grasp on time passing; these endless days staring at an incubator in that overheated room are otherwise timeless & threaten to go on forever. And over time, progress became visible on paper in a way I couldn't see by looking at him - some blood tests came back with encouraging news, the volume of his feeds inched up by a few ml, he put on a few grams in weight, saturation levels improved, eventually the time off CPAP increased, etc.

And as others have said try to get some sleep & decent meals into you, you need to be there when he gets stronger!

Wishing you both all the strength you need to get through this and out of hospital!

Supershiv1 Tue 23-Apr-13 23:45:39

Thanks for the support and your experiences.
Mornings seem to be worse for me when I am sat emotional on the breast pump.
I am part of the July ante natal group and we have a Facebook group that I am updating with Oliver's progress. That support and release has been great.
I will look at Bliss as I really need to connect/hear similar stories (even though I know no 2 babies are the same).

No advice as mine were much later, but lots of hugs and positive vibes. Nicu is so hard, but I always found the staff genuinely amazing so I hope you find some you can talk to.
Keep pumping, it's worth every drop!

I just want to post and say that I am thinking of you both and sending my best wishes. I have no experience of preemies, so cant add anything helpful, but I can offer a hand to hold if you want it. x

Much love to you and Oliver
Tell him something simple like you will always love him ?
And let others help, advice, and support you if there are any decisions to be made about his medical care.
Thinking of you - and good for you for giving him your milk in the mornings - Be proud of yourself for doing your best for him.
Hope you have a good night and morning x

queenofthepirates Japan Wed 24-Apr-13 00:14:54

Hey there, just to let you know we're all thinking of you just now and keeping you in our thoughts xxx

AitchTwoOhOneTwo Wed 24-Apr-13 00:22:53

love to you and Oliver, keep buggering on you two.

ShesADreamer Wed 24-Apr-13 00:45:09

Just wanted to say look after yourself as well. Too often we keep going on love and adrenaline at times like this. Am thinking of you and your little fighter and wishing for the day you get that lovely first cuddle.

amazingmumof6 Wed 24-Apr-13 01:08:54

I have no experience in what you are going through, but wanted to offer my support and best wishes.
it's very good that you are able to pump breast milk, Oliver will benefit from it greatly.

I'd say try taking some good multivitamins and fish oils to help your body get stronger and boost you up and aid the breast milk production - also good meals, lots of water and some sleep if you can.

I hope that my suggesting to watch some comedy if you can or read some funny threads on MN to cheer you up a bit is not insensitive, but it might help to lift your mood however temporarily.
(I'm only saying this because I did find funny stuff a helpful type of escapism when I was heartbroken over my MC)
If it is a stupid suggestion than just forget it and I apologize!

big hugs and lots of love

MichaelaS Wed 24-Apr-13 10:11:43

Hello there - congratulations on the birth of your son, and welcome to the strange, scary and stressful world that is the NICU.

I have to be brief as we have to pop out in 2 mins, but hopefully I can come back soon and say more.

My first child, DS1, was born at 24+1 and weighed 620g. When he was born he had "bad for gestation" lungs, he had a total body infection (sepsis) and lots more problems. They did not think he would survive. He had two brain bleeds - IVH grade 4 on the left side, grade 3 on the right. At that point the hospital asked us to sign a "do not resuscitate" order because they thought he was so unlikely to pull through. The doctors told us all sorts of horror stories about what he could be like if he survived - bedridden, deaf, blind, epileptic, severe cerebral palsy. Looking back they were telling us the worst case scenario, but at the time it felt like they were telling us it definitely would be like that.

Well, my boy held on and fought and fought. He got off the ventilator after 9 weeks and a whole lot of steroids. He had a PDA ligation (heart surgery) when he was 5 weeks old and only weighed about 800g. He suffered a collapsed lung too, had hernia operations and lazer eye surgery to correct ROP. But he just kept going. Over time he put on more weight, which helped him fight infections as he picked them up, and which helped his lungs to grow and his breathing to improve.

He came home at 5 months old, and was on home oxygen until he was 2 years old (the second year was night time only though). I was very worried about his development, and I was always looking out for signs of problems. We had speech therapy, physiotherapy, and lots of other input. We even paid for a private developmental consultant (who was fantastic).

Fast forward 4 years and I have a happy, bright, cheeky little boy who is going to school (nursery class). You would not know he had such a difficult start. He does have a few "quirks" - he is undersensitive to pain and temperature, and white noise can freak him out - and he did not say a single word until he was 3 years old (we were learning sign language and everything). But he kept getting better and better, and has defied all odds. Believe it or not, he is 2 years AHEAD in numeracy and literacy and can actually read even though his corrected age is 3 years 8 months. OK so he's not potty trained yet and can be a bit "young" emotionally, but these things will even out in time.

I just wanted to share so you had a similar story with a good outcome. Not all babies have good outcomes, but the majority do. Do you know that when they talk about "disabilities" as a result of prematurity that includes wearing glasses!!

There is so much you can do for your son as a parent. Breastmilk is fantastic, it offers loads of immunological benefits as well as being ideal nutrition. Sitting next to him, talking to him, comfort holding or kangaroo care when he's well enough - all of these things will help your son's brain develop. He needs to be cherished and loved, and everything else will come with that.

Noone can tell you what the future holds, but having a loving mum will give him the best chance possible, and you will be amazed how far these tiny babies can come. Their brains are so young that they can re-wire around damage which might kill a full term baby. We really have miracle babies!

I would second the advice to have a look at the Bliss website - go to the help for parents section and look at the message board or see if there are any groups in your area. I run a group on a hospital NICU unit and a sister group for discharged families, there are lots of them about.

Good luck, and I hope your little boy keeps fighting and getting stronger.

NotSoNervous Wed 24-Apr-13 11:01:34

Wow micheala what a great positive story, it's lovely to hear your boy is doing so well and in sure it will be a great comfort for the OP

clabsyqueen Wed 24-Apr-13 16:40:51

Supershiv, its tough. Really tough. Michaela is right when she says nobody can tell you how it will work put for your boy but I saw many success stories during my 12 week 3 day stay in Neonatal. My own baby was 28 weeks weighing 660g and went through a lot including NEC. No brain bleeds though. I did see 24 weekers do well albeit very very slowly. Stay sane by taking care of yourself. I tried to focus on expressing which helped me a lot but don't worry if you can't. Take care x

Mandy21 Wed 24-Apr-13 17:57:42

OP I can't offer any advice (I had twins at 27+6 so later and heavier than your LO) but I just wanted to reiterate that you should get in touch with BLISS or have a look at their website.

Oh, wow, you are expressing too - well done, you!
I hope you and Oliver had a good day, or what counts as a good day on NICU.

Michaela, your and your son's story just reduced me to tears. Thanks for sharing. You most both/all be v strong people indeed x.

Supershiv1 Wed 24-Apr-13 23:27:50

Michaela your situation is possibly the most similar scenario I have read. Thank you soooo much for sharing.
Where are you based? I am in Arrowe Park on the Wirral staying in the Ronald Mcdonald housing.
Oliver came off the jaundice lamp today, took off his shades and opened his eyes for the first time (that we saw).
He is the elder statesman of the NICU at 12 days, everyone else has graduated to nursery or HD.

smile@ elder statesman - well done Oliver - and you !

MichaelaS Thu 25-Apr-13 09:38:50

I'm
Glad it helps you. I know lots of other very early prems too, the majority are fine but with a few issues like physical problems or late speech or sensory wobbles. I know very few who have the sort of life I feared my son might end up with, I.e. so badly damaged that participation in school, playing with friends etc is not possible. :-)

We are in East London, the Bliss group I run is in Whitechapel. I know the Bliss volunteer coordinator for Manchester and she is lovely.

One other thing you might not know about - Bliss have a helpline where you can call to talk through your worries or just to speak to someone who understands what it's like. Number is in their website.

Take one day at a time, there will be ups and downs and lots of babies will go home before you do, but chances are that eventually your son will come home, and one day you will give him hell for putting you through all this worry! Xxx

Mandy21 Thu 25-Apr-13 12:30:17

OP I'm in Manchester and I know there are a few groups scattered in the NW - I've been involved with BLISS ever since I had my twins (support group) and latterly as a fund raiser and everyone is really lovely and I'm sure you'll get some support. I didn't find BLISS till we'd left hospital but wish I had - I didn't think anyone who hadn't been through prematurity / NICU could possibly understand what I was going through - but the people at BLISS definitely understand. I met quite a few BLISS campaigners / families on Sunday and there are definitely lots of positive stories for babies like Oliver.

VivaLeBeaver Thu 25-Apr-13 12:40:11

Oliver sounds like a fighter. Thinking of you.

Supershiv1 Sat 27-Apr-13 00:06:57

Just thought I'd update you.
I held Oliver for the first time today (with nurses help as on ventilator).
2 wks ago I was in labour!
Fingers crossed x

AitchTwoOhOneTwo Sat 27-Apr-13 00:45:09

massively crossed. keep on, both of you.

MrsBungle Sat 27-Apr-13 00:51:44

How brilliant you got to give him a cuddle! Lots of good wishes from me. xx

lia66 Sat 27-Apr-13 00:52:32

That's a lovely update to read shiv :-)

Glad to see little Oliver is a fighter x

Oh, the first cuddle - how lovely smile!
Oliver and you are in this together and my fingers are also v crossed for you.

ipswichwitch Sat 27-Apr-13 09:19:38

So glad to hear you got your first cuddle, will be the first of many i'm sure. I'm keeping everything crossed for you.

Ah, that's made my day smile How lovely !

AWhistlingWoman Sat 27-Apr-13 12:32:58

Yay! So glad that you had a cuddle with Oliver! smile

HDEE Sat 27-Apr-13 12:51:49

My twins were born at 23 weeks and weighed a pound each. It's amazing how strong these tiny babies can be. The brain bleeds are worrying but the brains of developing babies are amazing things and they often do very, very well.

My twins are three now and perfect. We kept a blog while they were small and now and again I go back and reread it.

My best advice is to remember that just because your baby is in hospital, he is still YOUR baby. You know him better than anyone and are his voice. Don't be afraid to speak up for him, or touch him when you want, or be firm about needing kangaroo care. Personally I preferred not to unsettle my babies while ventilated, but its your choice and you should always make your feelings known.

Supershiv1 Sat 27-Apr-13 16:59:05

Thanks HDEE. Good to hear of others with similar weight doing well.
Like you I prefer not to unsettle him whilst ventilated, but he'd had a stable day yesterday and he's now 2 wks old.
Once he is stronger I will be kangarooing all over the place (as will DH) as I know it's good for recovery/development.
Changed his nappy yesterday and he promptly bradied!

Sounds quite exciting to be looking forward to more kangerooing shiv. I always thought that sounded a great way to go with things (but I don't know much about it all) I think it would be the sort of thing I'd go for though if it was offered as an option. (We did lots of co-sleeping and that sort of thing with ours throughout baby and toddler years)
Kangerooing all over the place sounds quite bouncy .... like Kanga ? grin
HDEE's advice sounds great. I think the more "at home" you can make yourself in a hospital the better !

MichaelaS Sat 27-Apr-13 22:41:05

Hi Supershiv - how fantastic that you got to hold Oliver!! Kangaroo care is fantastic once he is stable enough - much easier once they are on CPAP but it is possible on a vent. Completely agree with HDEE about remembering he is your baby and you are allowed to state your concerns, preferences and ask and ask until you're happy you understand his medical care (or as much of it as you want to understand).

I hope Oliver has a stable couple of weeks and grows, matures and is able to take little steps forward. Look after yourself Shiv!

Quodlibet Wed 01-May-13 17:44:33

OP I don't know if you've seen this blog: www.arthureccles.blogspot.co.uk/?m=1. I'm not sure how similar your situations are but he was a very fragile little boy born early who I think had a couple of bleeds but who is now doing really well.

ArthursDaddy Thu 02-May-13 12:41:46

Hello. I found this thread as it was linked to our blog:
www.arthureccles.blogspot.co.uk I'm Arthur's Dad (sorry I do know this is Mumsnet).

Arthur was born at 26 weeks and also had a Grade 4 IVH on one side and a Grade 3 on the other. We too had some very difficult and unpleasant conversations about whether they should continue. Arthur is now a perfectly well two year old. Remarkably, astonishingly, wonderfully normal. Amy and I are both doctors, we understand why you're being told what you're being told. But the absence of hope from the discussions is utterly horrid.

Oliver isn't Arthur. I don't know how he'll do and I wish him all the strength in the world. Arthur had a rough course and did well. If you think it might help do look at the early posts from Jan and Feb 2011. We still can't re-read them without crying, even two years later.

My thoughts and hopes are with you. Have strength and get all the support you can because you're on a rollercoaster without brakes, and you can't get off. All the best.

Aw, ArthursDaddy, I am not the OP (obviously), but it is so kind of you to take the time to post this.

And MN is 'by parents for parents'. Welcome smile!
You sound like you have a remarkable little boy.

My preemie is now 9yo and built like the proverbial outhouse, but I will now go and have a look at your blog if you don't mind.

Super, I have been thinking of you and Oliver. Sending much love and strength.

Supershiv1 Fri 03-May-13 07:40:37

Arthursdaddy
Thank you for taking the time to respond. I started reading some of Arthur's blog last night. It's something I would like to do with Oliver (otherwise every day is groundhog day and you loose the small achievements). I have started updating facebook with photos and sporadic updates but have no wifi and doing it all via phone.
Oliver also seems to be a fairly unique case in terms of his weight and the fact he was delivered at home and had to be resuscitated by his dad (meaning core temp unstable, no steroids for me and serious bruising for Oliver as natural birth).
Stories like this do give me hope, so thank you for sharing. It's also good to talk to others who have been through similar experiences, as I didn't know this world existed (& how heart breaking it was) until 3 wks ago.
I too hope bey

Supershiv1 Fri 03-May-13 07:44:16

I too hope beyond hope that Oliver will not only survive (still no increased odds from day 1 I.e. under 40% survival chance) but be a miracle in not letting the brain bleeds mean anything too debilitating.
I would message you my Facebook name if I could message you on here?
Thank you again for sharing.

mymatemax Sat 04-May-13 21:15:31

Supershiv, congratulations, the first cuddles are priceless. My ds was born at 28 wks but had a rough time in SCBU with all the usual complications.
My ds2 does have long term disabilities but that is OK, he is still first & foremost our gorgeous DS2 with his own character, personality, like & dislikes who argues with his brother.
It is just as likely that your beautiful Oliver will grow into a happy healthy little boy with no disabilities but if he does have any war wounds to show from his early arrival life can be just as good. Take care x

Gurke Wed 08-May-13 11:37:53

Hi OP - just been thinking about you and Oliver. How are you both today?

Supershiv1 Sat 11-May-13 10:20:20

Hi. Oliver is 4 wks old today.
In the past week he has been treated for infection, went on Bipap, went back onto ventilation, had a collapsed lobe in his lung, had feeds increased to 1ml an hour then back down to 0.5ml an hour, had blood transfusions, good gases and bad gases, brain bleeds re categorised to 4&4, then 4&3 (from 4&2).
Basically I wouldn't wish this on anyone, but little man is still here & very cute.
Need him to increase his feeds and try to get off the ventilator again before we start talking steroids.
Thanks for asking.

mymatemax Sat 11-May-13 10:28:17

Glad to hear he is still fighting & of course being very cute smile slowly slowly but he will get there. Thinking of you & of course Oliver x

CassieTheCockatoo Sat 11-May-13 10:43:38

Also thinking of you and little Oliver....big hugs

Hi Supershiv, I just want to send you and Oliver hugs. He is a little fighter!!

My dd was born at 28 weeks but only weighed 1lb, she had all the usual problems and blood transfusions, brain bleeds etc. It was a long slog (as you know) but she is now a happy 3 year old.

Are there other parents on the NICU to talk to? That helped me.

Thinking of you xx

AWhistlingWoman Sun 12-May-13 13:20:34

Glad to hear that Oliver is hanging on in there Supershiv (and, of course, being cute!)

It is a long slog and a bit of a roller coaster with all the ups and downs. Even reading phrases like 'bad gases' still sends a chill down my spine nearly five years later.

Hope that Oliver's feeds go up and that he gets off the ventilator again soon. My DD2 took seven weeks to get rid of the vent and I think that MichaelaS's little boy took a couple of weeks of more (we've commented on some of the same threads on the subject on the Bliss website!) So they can still get there even when it feels like time is standing still.

Hope that you are getting lots of support, it is such a terribly difficult experience and my heart goes out to you and to Oliver. Hoping for lots of good news to come for you both x

FannyFifer Sun 12-May-13 13:28:10

Just seeing this thread now, wishing you and your darling boy well.

WouldBeHarrietVane Sun 12-May-13 13:47:12

Wishing him well and big hugs to you.

xx

Supershiv1 Tue 14-May-13 21:57:08

Hi all. NICU day 30.
Latest thing is desats and profound bradycardia.
Docs seem to be linking them to the brain bleeds/central nervous system which wouldn't sound good to me if they think they're neurological.
He had really bad gas this AM and there was talk of moving him to oscillation vent. He's had a transfusion and better gases since but being screened for infection again and apparently the episode this morning is the illest he has been and the speed of the deterioration is a massive concern.
I have joined the Bliss forum & will have a look/post when I get chance.

Sending a virtual handhold this evening. Xx

Oh, Supershiv, the relentness seesaw of good news/bad news on NICU sad.
Every day is good news.
He is hanging in there is good news.
There is something else they can do for him (oscillation vent) - good news.

Try and focus on that. And just be there and love him in the meantime.
Don't feel obliged to post. This thread is for YOUR support, not for us.
Thinking of you and Oliver. I hope you find support from BLISS.

VivaLeBeaver Tue 14-May-13 22:02:11

Thinking of you and wishing you and Oliver well.

rosieposey Tue 14-May-13 22:06:13

Just want you to know that you and baby Oliver are in my thoughts and prayers - from one Shiv to another.

mikkii Tue 14-May-13 22:21:10

My thoughts and prayers are with you, Oliver, Daddy and the rest of your family. I don't have a story to inspire you, but I was blessed not to be in your position after a first admission at 24 weeks.

Miracles appen every day. Oliver can be one of those miracles.

dinkystinky Wed 15-May-13 09:39:05

The posts on here are truly inspirational - Shiv, Oliver is every bit as tenacious and determined as these other wonderful little babies were (and by the sounds of it still are many years later) and am keeping everything crossed for you. Hope today is a better day for all 3 of you and that Oliver surprises the doctors yet again today x

RedKites Wed 15-May-13 09:45:00

Thinking of and praying for you all.

mymatemax Wed 15-May-13 19:39:49

Thinking & prating for you all.
DS2's gases were always given a boost by regular blood top ups, de-sats & brady's never really settled until his PDA was sorted but that had to wait until he was a little bit bigger.
We too were told his brady's could be Neuro related, I dont think they were, or if they were they resolved themself in time.
Day by day is all you can do, take care x

ChimeForChange Wed 15-May-13 19:55:45

Hello Shiv,
Hoping today was better than yesterday for you.

Thinking of you and Oliver and daddy. Sending you lots of warm, happy wishes and thoughts. X x

Thinkingof4 Wed 15-May-13 21:15:37

shiv hoping you and Oliver had a better day today x

Isitme1 Thu 16-May-13 10:12:38

Shiv I hope Oliver is doing better today.
Like another poster said every new day is good news.
Remember to look after you too!
You need to keep your energy up to carry on being by Olivers side.

X
How is he doing?
Im from the july ante natal group. Just not managed to keep up with that lot lol.
X

CassieTheCockatoo Thu 16-May-13 11:29:19

Also still thinking of you and little Oliver...

lia66 Thu 16-May-13 11:54:51

Lurker here.

Thinking of you and your family Shiv. X

SugarMiceInTheRain Thu 16-May-13 12:00:19

Thinking of little Oliver and of you and your family Shiv... x

ArabellaBeaumaris Thu 16-May-13 12:02:32

Just saw this thread. Thinking of you.

mildred37 Thu 16-May-13 13:25:24

De-lurking to let you know I'm thinking of you and Oliver. Here's to hoping that no news is good news. X

Mama1980 Thu 16-May-13 20:41:09

Thinking Of you and Oliver xxx have also sent you a pm again.

Thinking of you, mrshiv & Oliver. X

Barbarashop Thu 16-May-13 20:51:22

Thinking of you and little Oliver x

wannabestressfree Thu 16-May-13 21:00:43

Thinking of all your family. Hang on in there xx

pizzaqueen Thu 16-May-13 21:06:27

Thinking of you. Sorry I haven't read the whole thread but I just wanted to tell you about my one of my very close friends. She was born in 1987 weighing just 1lb 1oz. After a rocky start in life she grew up to have a completely normal and active childhood, she has gone to uni, travelled the world, speaks a few languages and now works as a teacher abroad.

You would never know the circumstances she came into the world, the only signs of her difficult start are a large birthmark on her shoulder and she wears glasses.

Now medicine has come along was since 1987, although everyone's journey is different keep strong and be brave and focus on the positive stories of the many many people who have come through this to lead long, happy, fulfilled lives.

ariane5 Thu 16-May-13 21:15:20

Thinking of you x

gallicgirl Thu 16-May-13 21:23:08

I hope you're all doing ok and Oliver is improving.
I know it's a little thing but there's a charity called Pop n Grow who provide free clothing for premature babies. The nicu ward has to approach them.

It's a long road but hopefully you'll have a healthy little boy at home before you know it.

Abilee90 Sun 19-May-13 03:25:33

To the strongest mummy on here
I'm on the august due date club and one of the ladies mentioned you. I have every update that you put on the july thread, i just cant get little oliver out of my head.

I couldnt imagine seeing everything you are going through and staying so strong but no matter what there is always hope and miracles to be had. It may seem distant now but you and your little man will be home together in th future. I hope that you have the most amazing support from your dh and family. You truly are on strong mummy.

Satistics are there to be smashed through, clearly little oliver is proving that 35 days old, he's clearly getting his strength from his mummy. I cant share an expirence but i will say is, even in darkest of days kids will come through It, they have a strength that only kids will have. a parents uncomditional love. I will keep oliver, you and dh in my thoughts and send untold amounts of get better vibes!

Never lose faith or hope! Stay strong sweetie!
Also well done to dh thinking so fast!
Xxx

TwentyTinyToes Sun 19-May-13 03:44:00

Thinking of you and little Oliver. X

moreyear Sun 19-May-13 05:17:10

You and little Oliver are in my thoughts.

Isitme1 Sun 19-May-13 09:31:28

Hope everything is ok x

coffeewineandchocolate Sun 19-May-13 09:34:43

thinking of you xx

Mama1980 Mon 20-May-13 10:07:48

Thinking of you and Oliver, hoping for good news. Xxx

MummyOfSunbeam Mon 20-May-13 10:24:51

Shiv I am so sorry for the agony you're going through - poor little darling Oliver. Like the other posters I am thinking of you both and I hugely hope that he is doing better.

hellonewworld Tue 21-May-13 10:15:41

Do let us know how he is doing, any news? x

hellonewworld Tue 21-May-13 10:15:47

Do let us know how he is doing, any news? x

Supershiv1 Wed 22-May-13 08:06:15

Crikey. I am overwhelmed by the messages of support.
The last week has again been difficult with another 'conversation of doom' with the consultants as they had to effectively revive Oliver on Wednesday afternoon when he kept having profound and continuous bradycardia and desats. The consultant told us that there might come a time where Oliver simply doesn't respond as he can't cope anymore. Heartbreaking.
We made a decision to try Oliver on steroids, despite possible side effects.
Oliver is on his 6th day of steroids to try and get him off the vent - so fingers crossed.

TwentyTinyToes Wed 22-May-13 08:55:21

Everything crossed here for you and your darling boy. Hoping for some good news. X

Mama1980 Wed 22-May-13 09:04:56

Oh supershiv I'm sorry to hear that Oliver's still so poorly. I know how utterly heartbreaking it is. Alex didn't have the steroids as he'd been given them and mag in utero but there was anther boy in nicu who did and they helped him off the vent. I don't want to give false hope but I know when Alex was in nicu I would have sold my soul for some good news/hopeful stories.
I am thinking of you and Oliver And have everything crossed for good news soon xxx

Isitme1 Wed 22-May-13 12:09:22

Hope the steriods work x

Supershiv1 Wed 22-May-13 12:09:37

Mama1980
Yes. Good stories do help you get through the day x

Mama1980 Wed 22-May-13 12:57:51

Is Oliver responding to the steroids? Have they talked to you about Cpap?
I know how difficult it is but remember to eat and drink as much as you can.
Thinking of you all xxx

Supershiv1 Wed 22-May-13 20:37:30

I held Oliver properly, against me, for the first time this evening.
He will be 6 wks old on Saturday.
He's responding to the steroids and if he has a good night could be off the ventilator tomorrow (cpap perhaps?).... fingers crossed x

mymatemax Wed 22-May-13 20:37:35

thinking of you and your little fighter Oliver xx

OhBotheration Wed 22-May-13 23:03:22

Hi Super, a lurker here wishing you and Oliver all the luck and good wishes in the world.
My own 25 weeker is asleep upstairs. We were in NICU 18 months ago. Who knew such a wee thing could possess such strength and it sounds like Oliver is the same.
Great news about the steroids, everything crossed for tomorrow x

TheSecondComing Wed 22-May-13 23:11:14

Message withdrawn at poster's request.

Isitme1 Thu 23-May-13 09:33:09

Glad hes responding to the steriods. Do let us know how he went of vent
X

mymatemax Thu 23-May-13 11:28:33

great news that the steroids seem to be working.. could be the cuddles you know smile x

Isitme1 Sat 25-May-13 17:48:38

How is he doing x

Doobydoo Sat 25-May-13 17:57:50

Kangaroo care and Bliss...(from ex neo natal nurse and mother of premature baby!).xxxx

NowFourSpuds Sat 25-May-13 22:38:11

Hi Supershiv,

This is my first post but wanted to give you my story. I have 23 weeker twins who both had pretty poor lungs, not surprisingly. Dtd was especially fond of the ventilator, my dts swayed between the vent & bipap every few days. Eventually we were told they would need the course of steroids. Luckily for us it worked for both twins, and other than one day back on the vent for DD it helped them to stay off and they soon started making good progress.

They came home at 2 weeks corrected, DD is on O2 but is currently being weaned, both had brain bleeds DD grade 3/4 and DS 2/3. It's very early days as they are only 12 weeks corrected but so far they are doing what they should be!

I'll be keeping everything crossed for Oliver to make the move onto bipap very soon. It sounds like you're doing a fantastic job!

Supershiv, I hope the steroids are doing the trick for Oliver smile

Keep on cuddling, ideally skin to skin, as much as you can - it's good for you and him.

Best wishes also to your twins, NowFourSpuds, their journey sounds amazing!

NoBloodyMore Mon 27-May-13 20:12:55

Thinking of you and Oliver, hope he's still fighting and doing well xx

ThenWeTakeBerlin Mon 27-May-13 20:30:33

Hope Oliver is ok, saying a prayer for you and your wee boy, Shiv envy

Bit late to the thread but wanted to add I have a 26 weeker who weighed 750g/1lb 10oz at birth, went down to just under 700g at one point. Neonatal is a terrifying place and we had our share of ups and downs and DD came home 3 days corrected. She is now 15 months (12 corrected) and is just perfect, on track with all her milestones and lovely!!

Sending loads of love and best wishes to Oliver and to you. It's scary but they can work miracles sometimes smile

QOD Mon 27-May-13 20:49:28

Hope he's ok x

Coconutty Costa Rica Mon 27-May-13 20:55:16

Sending love and cuddles to you and Oliver xx

MakeGlutenFreeHay Mon 27-May-13 21:08:05

Just seen your thread - I'll be holding you and Oliver in my prayers. He sounds like such a little fighter.

WingDefence Netherlands Mon 27-May-13 21:15:28

I've just found this thread. Prayers winging their way for Oliver and you and your DH x

Sarahplane Mon 27-May-13 21:28:36

Sending lots of positive thoughts to you and Oliver. I hope he's well soon. My best friend was born at 25 weeks, her parents were told to expect the worst but luckily she's now a very healthy 28 year old. No adverse effects except that she's still quite small.

Whatalotofpiffle Mon 27-May-13 21:33:36

Hand holding, don't know what to say. We are here for you xx

TwentyTinyToes Wed 29-May-13 12:08:07

Hope you are all ok, been thinking about you. X

Isitme1 Wed 29-May-13 18:16:07

Hope things are going well x

Supershiv1 Thu 30-May-13 08:20:49

Hii.
Oliver finished his steroids earlier in the week and made it as far as bipap. We're taking time to get him to cpap as we don't want a relapse that means he's re ventilated.
I have had skin to skin 3 times now . Once Ollibobs tried to lick my chest so I am clinging to that as a normal baby thing in the hope it might demonstrate he is functioning despite neurological issues being bandied about.
He's now up to full feeds and canula free too, just wish he'd stop the bradycardia and desats (although they're not as bad as they were).
Thanks for your continued support. It means a lot.

JoEW Thu 30-May-13 09:18:35

Hi Supershiv
Good to hear from you, I've been keeping you and Oliver in my thoughts. Great to hear you've managed to get some skin to skin, it makes such a difference.
Oliver is being so brave, bless him.

Supershiv1 Thu 30-May-13 09:56:25

Just an update. Been on consultants rounds & Oliver is now on CPAP! Yippee....

Isitme1 Thu 30-May-13 09:58:19

Aww bless. It's amazing how well these babies do.
I know a 26 weeker who wqs very ill at the start of life
She is now around 3 years old, goes to nursery and is a mischievous little monkey with no special needs and the most that she has suffered from is reflux and she has chronic lung disease.
Shes a little parrot!
X
How are you doing? ?
X

Oh, lovely, good news smile!

I have some lovely pictures of DS2 looking like a little piglet with his CPAP mask on grin - which WILL be used to embarrass him on his 18th birthday <evil>

And yes, how are you holding up??
Look after yourself - Oliver has more staff at his command than he is ever likely to have when he goes home wink x.

WingDefence Netherlands Thu 30-May-13 11:55:13

OP I have no idea what that means but it sounds good! smile

Re bradys and desats: give him time, I know it's hard, but time is the only thing that will improve that, frankly.

I was trying to do the maths: is he 30 weeks yet? Or not quite?

FWIW, DS2 came home at 35 weeks after he passed the car seat test ie did not desat/get bradycardic when sitting in his car seat. He was born at 31 weeks and yes, much bigger than Oliver, so he may well take longer than that.
I can honestly say that our time in NICU/SPBU was the longest and most scary time of my life, but now (9 years later) it seems like a bad dream, and a short one at that.

Keep looking after yourself - it is honestly so important. You'll need all your strength for the coming weeks and even more so when he comes home. Which he will <gavel> (hugs)

HappySmileyFace Thu 30-May-13 13:40:00

Still been checking in on you (I have name changed) but you have been in my thoughts.

CelticPromise Fri 31-May-13 20:32:59

Hi SuperShiv. I have only just seen your thread.

I have a 27 weeker who was 1lb 4oz at birth and took six weeks, PDA op and a course of steroids to get off the vent. I remember that amazing step onto CPAP so congratulations to you and I hope Oliver is coping well. I hope you are getting much more skin to skin now he is off the vent.

My DS took a good long time to get off CPAP and I got to be pretty expert at getting him out for a cuddle. We even started breastfeeding on CPAP. He came home on oxygen at about nine weeks corrected.

He is approaching 4yo now and you would never know he had such a tough start. No side effects from the steroids, not even a chest infection the last two winters. I wish for you and Oliver to be as lucky as us.

Mama1980 Fri 31-May-13 20:48:41

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

clabsyqueen Sat 01-Jun-13 20:40:36

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!

Supershiv1 Sun 02-Jun-13 00:23:48

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.

Supershiv1 Sun 02-Jun-13 00:34:21

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.

mymatemax Sun 02-Jun-13 01:22:53

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 smile
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.

Supershiv1 Sun 02-Jun-13 11:45:07

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

Isitme1 Sun 02-Jun-13 12:05:27

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

TickleMyTitsTillFriday Sun 02-Jun-13 12:11:16

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.

circular Sun 02-Jun-13 14:26:45

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....

Supershiv1 Sun 02-Jun-13 14:26:46

Thanks tickle (great name btw)

Supershiv1 Sun 02-Jun-13 14:29:30

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

mymatemax Sun 02-Jun-13 17:43:50

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.

Mama1980 Mon 03-Jun-13 20:24:41

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

Supershiv1 Mon 03-Jun-13 21:36:16

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 smile.

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

mymatemax Mon 03-Jun-13 22:13:36

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 smile x

CelticPromise Mon 03-Jun-13 22:30:02

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.

Wereonourway Mon 03-Jun-13 22:34:03

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.

OhBotheration Mon 03-Jun-13 22:55:10

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

SundaySunshine Tue 04-Jun-13 10:49:01

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

MiaowTheCat Tue 04-Jun-13 15:07:31

Out of interest were everyones prem babies born in hospital?

Mine are nowhere near in the same league as you in terms of prematurity (33 and 36 weeks) but I now know I have precipitate labours and I go into labour prematurely... DD2 was a 15 minute epic (her sister took a more sedate hour) but thankfully I'd spotted the niggly patterns from DD1 so they'd managed to hold off the first threat of labour with drips and getting steroids in at that same 33 week point this time - and then I was in and out of the local delivery suite for a good fortnight before arriving, not in labour and proceeding to go from 0 to baby in under 15 minutes. The combination of my body trying to go into labour from about 32/33 weeks, plus the increasingly rapid deliveries mean there's no way on this planet I'd risk having a third child as it very much could be either a hospitalise me from early on just in case, or baby in the back of the car situation - not something I'd want to risk with the prematurity thing.

I keep following the thread - not much I can say since mine were very much late preemies (and I feel a bloody fraud in DD2's case describing her as a preemie at all since she was a big-un) - but please, take care of yourself, not just Oliver as I really found I unravelled quite spectacularly once we were all home together and the pressure was off in that regard.

You're all in our thoughts (well probably not DD2's thoughts since she's currently snoring her head off in a most unladylike fashion but we'll pretend on that front!)

CelticPromise Tue 04-Jun-13 18:34:15

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. flowers

clabsyqueen Tue 04-Jun-13 20:13:56

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.

NowFourSpuds Tue 04-Jun-13 21:36:43

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

flatmum Tue 04-Jun-13 21:37:39

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

carlywurly Tue 04-Jun-13 21:40:56

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

TickleMyTitsTillFriday Wed 05-Jun-13 09:41:55

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

Mama1980 Wed 05-Jun-13 12:07:34

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 blush

sar1133 Wed 05-Jun-13 15:29:34

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

Isitme1 Thu 06-Jun-13 17:07:02

Hope things are better today x

Supershiv1 Thu 06-Jun-13 17:30:34

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

FeelingHorse Thu 06-Jun-13 17:53:43

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

slalomsuki Thu 06-Jun-13 18:12:22

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.

CelticPromise Thu 06-Jun-13 19:43:40

Good news that the transfusions are helping. I hope you get cuddles tomorrow. I'm glad the sunshine is helping smile 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.

Supershiv1 Thu 06-Jun-13 20:09:42

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.

CelticPromise Thu 06-Jun-13 20:27:38

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.

CelticPromise Thu 06-Jun-13 20:29:43

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

mymatemax Thu 06-Jun-13 21:46:02

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.

clabsyqueen Fri 07-Jun-13 16:40:40

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

Mama1980 Sat 08-Jun-13 22:03:55

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

Supershiv1 Sun 09-Jun-13 08:43:03

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

Isitme1 Sun 09-Jun-13 10:01:33

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 shock.

NandH Mon 10-Jun-13 17:29:18

Sending you love and strength OP! flowers 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 smile

Mama1980 Mon 10-Jun-13 17:34:12

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

Thinkingof4 Wed 12-Jun-13 09:49:22

Hi shiv thinking of you and Oliver and hoping you get some more cuddles soon. You are doing an amazing job holding it together x

MightBeMad Wed 12-Jun-13 12:42:13

Shiv, just to let you know that I am still rooting for Oliver, you and mr shiv. I hope you are having a better day today x

SlouchingPanda Wed 12-Jun-13 21:23:08

Also popping over from the July thread to say that I'm thinking of you and your little family. Xx

Sending much strength to Oliver and his parents x.

TwentyTinyToes Thu 13-Jun-13 07:58:18

Thinking of you all and hoping Oliver is getting stronger. Hope you get some lovely cuddles soon. X

Supershiv1 Sat 15-Jun-13 13:15:01

Hi, just a bit of an update really.
We were working towards oliver coming off ventilation on Monday (after a suspected infection was ruled out over the weekend) when suddenly his gases went crazy. This time his bicarbonate really dropped for no apparent reason resulting in metabolic acidosis (as opposed to respiratory acidosis which is what it normally is).
This resulted in putting all his pressuresband rates up on the ventilator to try and compensate - meaning almost back to square one on the ventilator settings.
Gases are still very up and down and haven't worked out why.
All this means that we are having to give a second course of steroids as he has been on the ventilator longer than expected and it's possible that any benefit ghe first lot of steroids gave will have been negated.
It's heart breaking.
On the plus side he is 34 weeks gestation today, he had his 2 month birthday on Thursday, he's tolerating 9ml an hour in BM feeds, he weighs 1.145g (2lb 8oz) and he had his first amazing cuddles with daddy on Thursday (I eventually got cuddles on tuesday).
As one of the doctors said to me, "Oliver obviously hasn't read the text book, or perhaps he has read it, eaten it and then spat it out."
Xx

Bullets Sat 15-Jun-13 13:17:14

Thank you for the update, so pleased you've had cuddles now, stay strong, you've got a fighter xxx

Aww, thanks for the update and happy 2 month birthday to Oliver smile.

He has more than doubled his birthweight.
He has coped with problem that, more than likely, would've killed him at the start (sorry to be blunt - just trying to point out how far he's come)
He is tolerating oral food.
His dad got his first cuddle [melts].

And you just better get used to that babies/children very rarely have read the textbooks, the awkwards sods wink.

I spoke to the MW I work with yesterday, reminiscing about DS2's arrival and how I only got steroids once when his delivery was threatened at 25 weeks. He did not come along until 31+ weeks and there were no further steroids given to me or him. This has now changed - mums will be given steroids weekly if they are in danger of early delivery. Hey ho, things change.
Don't worry too much about him getting steroids again.

<<waves pompoms to cheer Oliver and his family on>> xx

MightBeMad Sat 15-Jun-13 13:33:45

I love that quote from the doctor shiv. Keep on fighting Oliver and happy 2 month birthday!!

MumnGran Sat 15-Jun-13 13:45:34

My heart goes out to you and your little family.
He is obviously a fighter, and has you fighting right there beside him.
smile

CelticPromise Sun 16-Jun-13 16:59:45

Happy two months Oliver. What a stressful week for all of you. Fingers crossed for lots of peaceful progress this week.

Cheeseandbread Tue 18-Jun-13 08:44:48

Just popping on fron July thread to say you Oliver and Mr Shiv are still in my thoughts and prayers. Yea for the cuddles. He is a little fighter! X

Mama1980 Tue 18-Jun-13 08:53:59

Just popping by to say yay and well done Oliver! Sorry to hear he s still having problems with the vent but its great that he's gaining weight and tolerating feeds so well it will all give him strength. I'm still thinking of you and cheering Oliver o.
I was where you are in January, now my boy is laying in his baby gym watching his brother roll sponge balls at him and giggling! Stay positive xxx

clabsyqueen Tue 18-Jun-13 18:54:25

I too have my fingers crossed for an uneventful week for you. It is certainly needed and deserved.

Supershiv1 Wed 19-Jun-13 09:38:39

Not medical, bur a charity called pop n grow have used Oliver's picture on their facebook page. He has blue mittens on and has a giraffe in his incubator.

MumnGran Wed 19-Jun-13 09:58:09

So pleased to hear from you.
How is Oliver doing?

Oliver showed star potential from the beginning. I can't believe he's already done his first modelling job!

samsmother Wed 19-Jun-13 22:53:05

Oh Super, just had a look, he's a beauty, well done and stay positive :-) been following thread but have yet to post x

Aw, Supershiv, a superstar in the making you've got there smile.

JoEW Thu 20-Jun-13 13:37:07

Just went on to Facebook to have a look at the little guy! Shiv, he's adorable, lovely eyes! I hope Oliver had a better week this week, he's a little star and so brave.

Supershiv1 Fri 21-Jun-13 21:12:50

Where is my light at the end of the tunnel?
The steroids don't seem to be having any effect, even though the doc's have extended b them outside the DART regime.
Oliver has a massive hernia and he had to be resuscitated today whilst I was changing his nappy ....

Oh, Shiv, so sorry to hear that sad - it is so tough.
Nobody can promise you that light at the end of the tunnel, but you must try and keep going. For him. For Oliver.
Big hug to you.
Much love and strength to all of you x.

CelticPromise Fri 21-Jun-13 22:00:24

Oh Shiv. Huge hugs and many thoughts and prayers to you and Oliver. My DS was resuscitated more than once and I remember that terrifying, helpless feeling. Much love to you both.

mymatemax Fri 21-Jun-13 22:27:56

Supershiv, it is so so hard, thoughts & prayers for you all. I hope you hard a stern word with your beautiful boy for playing up like that. x

thomasmad Fri 21-Jun-13 23:02:47

Hi, thinking of you all. It is really hard. Read somewhere that getting a baby home form SCBU was like "winning the lottery that noone would buy a ticket for". We had twins at 28wks and ended up in hospital a fair way from home so very stressful but nothing compared to others.
Try to take comfort in the support of friends, family and even strangers!! Everyone is rooting for little Oliver. Take care. x

MiniPopsMum2012 Sat 22-Jun-13 07:00:47

I've just read this thread from start to finish; you are an amazingly strong mummy and I am sending all my positive thoughts love and hugs your way and hope that little Oliver continues to eat up that text book and spit it back out and the drs flowers. Premmies are tough little things, and your LO sounds like an amazing little boy. I've just seen him on the pop & grow FB page and he's absolutely beautiful. I hope he starts to pick up again very soon, stay strong. x

NellysKnickers Spain Sat 22-Jun-13 07:20:15

Hi Shiv, have been following your story, ds1 was NICU, but not quite as tiny or as prem as your little Oliver, but he's a tall strong 8 year old now. Keep strong and positive sweetheart.

Supershiv1 Sat 22-Jun-13 08:42:14

In good news he did manage the next nappy without a dicky fit x

CelticPromise Sat 22-Jun-13 08:48:45

Well done Oliver. Tiny steps. I hope for a peaceful healing weekend for you both.

Isitme1 Sat 22-Jun-13 10:32:15

Glad the nappy change went smoothly.
Bless him. Hes adorable. Love the picture
Hope he has more positive steps
X

dinkystinky Sat 22-Jun-13 20:37:12

Shiv - hugs and love to you all. Glad you did the later nappy change with no drama (Oliver is clearly going to be a star of stage and screen when he gets older!) and hope you have a good, peaceful and stable weekend, and all 3 of you get lots of rest this weekend x

Supershiv1 Sun 23-Jun-13 09:16:39

I asked the question no one wants to ask at rounds yesterday and although we've been told before (a while ago) it's still not what you want to hear.
So i asked 'where do we go to next?' (In respect of getting Oliver off the ventilator and the fact he doesn't appear to be responding to the steroids this time).
The consultant said something along the lines of 'we need to see if he declares himself unfit to survive'.
I have been beside myself. It's always been made clear that his survival odds were low, but I can't give up hope and I am hoping the longer he hangs on the better the outcome - but that's cruel in itself as you get more attached.
I feel like I've been punched. 
Does anybody know anything about ventilator dependent babies???

katydid02 Sun 23-Jun-13 09:22:39

Hugs. I don't know anything at all about premature babies but I wanted to say I am thinking of you and Oliver.

CelticPromise Sun 23-Jun-13 10:06:39

Oh Shiv that is very very hard. I'm sorry you're going through this. Could you ask for a proper meeting with consultant so you fully understand all the options and what they are prepared to try? Maybe try to speak to whoever you trust the most. Keep talking to him, singing to him, pumping for him, it all helps. Hoping very much that he turns a corner soon.

Are you on the Bliss message boards at all? They can be helpful although sometimes a bit quiet.

Supershiv1 Sun 23-Jun-13 16:07:32

Hi celtic. Hubby spoke to consultant who said we were a way off that yet but they lookat llittle markers like his bradys and desats. He has positive markers like food tolerance and weight gain too. I suppose they can't give you false hope and the consultant reapects us for asking a very difficult question.
I have looked at the Bliss boards, but as you say they are very quiet.
I might be able to have some cuddles if his last gas was good so am going to get changed and toddle off and see x

VinegarDrinker Sun 23-Jun-13 16:16:53

Just to say we are thinking of you. Sounds incredibly tough. Respect for asking the tough questions. X

MABS Sun 23-Jun-13 16:32:27

really thinking of you x

CelticPromise Sun 23-Jun-13 17:27:22

Hope you have had a cuddle. I'm sure that's good for both of you.

mymatemax Sun 23-Jun-13 17:35:49

supershiv, the consultants are very good at giving worse case senario. it really is when you question & probe that you get a balanced opinion.
Keep doing exactly what you are doing & the docs will keep doing everything they can for as long as Oliver keeps fighting.
Weight gain is so important & a big step in the right direction.

SundaySunshine Mon 24-Jun-13 20:53:46

Shiv just popping in to say hi, give you a virtual hug, and send strong vibes to little Oliver, what a star he is. I just can't imagine having to ask those difficult questions and your braveness and strength is inspiring. I'm glad on closer questioning the DR was a little more reassuring . Hope you managed to get more cuddles x

Mama1980 Tue 25-Jun-13 08:01:00

Hi shiv just letting you know that I'm still thinking do you and cheering Oliver on. I have everything crossed That he will gain enough strength soon to be able to come off the vent. Sending strength and hugs x

MiaowTheCat Tue 25-Jun-13 10:10:38

I've got everything crossed for you all. And he's absolutely beautiful btw (I peeked - it was the lure of cuddly giraffes that got me).

Oh, Shiv, it is just so unfair and horrible to even feel like there is a need to ask the Really Difficult Question - my heart goes out to you and your DH.

I agree that drs tend to err on the side of gloomy. The general feeling is that making reassuring promises that, let's face it, are well beyond any HCP's ken to keep, is crueller than painting a pessimistic picture that may be turn out not to be true.

I am not sure where I stand on this tbh.
I think where there's Life, there surely is Hope.

Babysteps and one day/hour/feed/nappy change at a time.
Thinking of you and your tenacious little boy often x.

Isitme1 Thu 27-Jun-13 09:27:59

I hope hes doing better today and baby Oliver is in my prayers x

Mama1980 Thu 27-Jun-13 10:47:03

Thinking of you and Oliver xxx

Supershiv1 Thu 27-Jun-13 11:29:32

Ok it's kind of make or break.
He had really good gases yesterday and his pressures are down. However he's just had a really shitty gas, but they think it mighy be secretions on the end of his tube. The decision is whether to do a tube change or risk Bipap.
They are in conflab as I write...

McKTastic Thu 27-Jun-13 11:42:16

Have lurked with you from the beginning. Just wanted to say am thinking of you & yours.

Mama1980 Thu 27-Jun-13 12:06:52

I'm here for a hand hold shiv ((holds tight)) I have my fingers crossed, the worst part for me was the drs conflabs i felt so helpless. We're all rooting for you Oliver xxx

Supershiv1 Thu 27-Jun-13 13:10:50

Tube change. He started bradying so forced their hand. Pressures now back up by 2 to 21, but I know he can do this x

Mama1980 Thu 27-Jun-13 13:16:16

He can just look at how far he's come already. Food toleration and weight gains are great hopefully he still just needs some more time. Have they said what the next step is?
Thinking of you all x

Supershiv1 Thu 27-Jun-13 13:33:18

Tube change. He started bradying so forced their hand. Pressures now back up by 2 to 21, but I know he can do this x

Supershiv1 Thu 27-Jun-13 13:34:47

Sorry posted twice.
Mama all I know is we need him off the vent x

Cheeseandbread Thu 27-Jun-13 14:00:09

Still keeping the little fighter in my thoughts and prayers. Xxx

Mama1980 Thu 27-Jun-13 14:08:07

I wish there was something I could say. I have everything crossed for good news soon. X

CelticPromise Thu 27-Jun-13 14:13:33

Still here willing him on. I'm sorry it hasn't been a good day. Come on Oliver, more good gases soon x

MABS Thu 27-Jun-13 18:03:44

praying for you both x

Supershiv1 Thu 27-Jun-13 23:13:18

He's up to 25 on the pressure and has had to be sedated because he's fighting the vent :-(

Christelle2207 Thu 27-Jun-13 23:20:29

Not posted before but Thinking of you both tonight x

Mama1980 Thu 27-Jun-13 23:26:12

Thinking of you. Hoping Oliver has a good night xxx

I have everything crossed for Oliver here.
Wishing you all a relaxed night - no fighting the vent.

Barbarashop Thu 27-Jun-13 23:32:47

Thinking of you x come on little Oliver x

UnrequitedSkink Thu 27-Jun-13 23:37:14

I'm thinking of you too. Come on little man. X

HairyPotter Thu 27-Jun-13 23:38:15

Late to this, but I had to post and say how gorgeous your boy is. I'm so sorry to hear the latest news. He is such a fighter and you are doing an amazing job of being him mummy.

Sending love and hope that things start to get easier for you all.

chubbychipmonk Thu 27-Jun-13 23:40:34

What a little fighter you have! Thinking of youthanks

CelticPromise Thu 27-Jun-13 23:46:45

Oh bless him. I remember DS being given paralysing drugs on the vent, he still managed to kick his little legs. Saying a little prayer for a peaceful night for you both and a better day tomorrow.

IdaClair Fri 28-Jun-13 00:15:35

Crossing my fingers for you and little Oliver x

Mama1980 Fri 28-Jun-13 08:41:40

Hoping You have a better day today, we're all rooting for you, Oliver xxx

HappySmileyFace Fri 28-Jun-13 08:48:35

Thinking of you and your little baby. Sending hugs and support your way.

OhBotheration Fri 28-Jun-13 09:08:23

Hope you and Oliver have had a peaceful night. Willing you a good day, good gases and lower pressure. These babies will never know how much they terrified us, will they? x

clucky80 Fri 28-Jun-13 09:13:37

I haven't posted on here before but just wanted to say you are all in my prayers. Oliver sounds like a little fighterx

Supershiv1 Fri 28-Jun-13 11:39:59

Oliver is being transported to Alder Hey today as he needs an operation on the hernia - all along that has been preventing him from getting off the vent. His abdomen is so distended it's squashing his lungs.
Please pray for him xx

Mama1980 Fri 28-Jun-13 12:39:31

I don't pray but I am sending all the good wishes in the world Oliver's way. Keep fighting Xxx

Charleymouse Fri 28-Jun-13 12:50:14

Supershiv am praying for baby Oliver now. Best wishes and big hugs. Take care my love
CM
xxx

BoreOfWhabylon Fri 28-Jun-13 13:26:10

Wishing hard for Oliver. xxx

drinkyourmilk Fri 28-Jun-13 13:48:32

Just read this thread through.
Sending big fat positive wishes to Oliver. X hopefully this op will make a massive difference.

Abilee90 Fri 28-Jun-13 15:50:19

Wishing and praying that he has a super super smooth op and a fast recovery xxx

CelticPromise Fri 28-Jun-13 16:57:31

Done. Come on little one x

VinegarDrinker Fri 28-Jun-13 17:06:18

Thinking of you and Oliver x

mymatemax Fri 28-Jun-13 17:10:43

Ahhh Supershiv, praying that the op will be the turning point for Oliver & you all.
He certainly is a tough little cookie x

mrsdinklage Fri 28-Jun-13 17:12:52

Praying for you and Oliver flowers

SundaySunshine Fri 28-Jun-13 18:10:52

Ah Shiv sending all the positive thoughts, good karma, and strength vibes I can to Oliver, you and Mr Shiv. I hope with all my heart the op is a success and a turning point for the better for you all. You'll be in team Sunday's thoughts xx flowers

dinkystinky Fri 28-Jun-13 18:26:11

Shiv - you Oliver and DH are in the dinky households thoughts and prayers too. Really hope the op goes smoothly and marks a turning point for Oliver.x

Persuasion Fri 28-Jun-13 18:31:07

Thinking and praying for Oliver and your family Shiv. flowers

Thinking of you and little Oliver today. I've just seen his photo on the pop n grow FB page and he is gorgeous smile

Zhx3 Fri 28-Jun-13 18:47:20

Ii'll be thinking of you and Oliver, Shiv. Anything you need, just message me, even if it's practical stuff like a food shop x.

Thinkingof4 Fri 28-Jun-13 19:03:24

shiv Keeping everything crossed for Oliver that the operation goes well. Will keep you and Mr shiv and Oliver in my thoughts xx

Thinking of you, shiv, MrShiv & Oliver. Will be keeping everything crossed.

AliasNemo Fri 28-Jun-13 21:25:28

Lots of positive thoughts and best wishes from here too. Hope everything is going as well as it can and better than you hoped.

katydid02 Sat 29-Jun-13 07:33:15

Thinking of you all x

Many, many positive vibes being send Oliver's way from here too.
May this operation give him the opportunity he needs to get less dependent on the vent.
Everything crossed for him, you and your whole family x.

Gumps Sat 29-Jun-13 07:59:04

My prayers are being offered for Oliver and you all xxx

Mama1980 Sat 29-Jun-13 08:04:04

Thinking of you and Oliver this morning, hoping for good news. Xxx

chartreuse Sat 29-Jun-13 08:14:47

Thinking of Oliver today and wishing you lots of strength

insanityscratching Sat 29-Jun-13 09:06:32

Praying for Oliver and his brave Mummy and Daddy x

McKTastic Sat 29-Jun-13 10:14:08

In our thoughts Shiv x

BoreOfWhabylon Sat 29-Jun-13 11:25:18

Thinking of you all and wishing hard x

headlesslambrini Italy Sat 29-Jun-13 11:32:20

thinking of you X

Supershiv1 Sat 29-Jun-13 11:56:05

Oliver has come through the op. He is a superstar. His bowel was wrapped around one of his testicles!
We'll be staying at alder hey for a few days to keep am eye on his belly etc.
Hopefully this will do the trick x

CelticPromise Sat 29-Jun-13 11:57:55

Poor Oliver, great news he has come through. He's such a fighter. Best wishes to you all.

Floralnomad Sat 29-Jun-13 11:58:24

Good luck ,been watching this thread for a while ,I hope this is the turning point for you all X

Hi just wanted to add in at this point. I always keep an eye out for NICU threads as we have been through it and know how harrowing it is. I don't usually post as I don't think our story relates very well (pretty much the opposite story to yours in that ds was full term and far and away the largest baby in NICU, unfortunately he was also one of the sickest. One of the reasons I am posting though is your last post as ds had mutiple bowel difficulties including herniation due to strangulation. I'm not sure if any of my experiences will be helpful but just wanted to put here that some of our experiences may be similar and I am willing to share and to listen if it is of any help or support at all (my ds will be 9 this year by the way)

BoreOfWhabylon Sat 29-Jun-13 12:15:36

That is good news Shiv. Wishing and hoping that Oliver will now start to make progress. What a little fighter he is! Best wishes to all the Shivs xx

evelynj Sat 29-Jun-13 12:27:43

Delurking to say so pleased he's through the op-your family have been through so much. Keep strong & draw all the strength you can from the outpouring of support thats here for you.

Thinking of you & Oliver & crossing everything that this is a turning point for the better. You're all doing so well. Keep positive x

TickleMyTitsTillFriday Sat 29-Jun-13 12:46:28

What a strong little boy. He sounds like a little miracle fighter to me! Stay strong, we are all behind you.

Christelle2207 Sat 29-Jun-13 12:56:29

really pleased there is some good news shiv. I work with the NHS and I know alder Hey is one of the very best places to be.

ajandjjmum Sat 29-Jun-13 13:41:52

Not seen this thread before. You are amazing Shiv - praying for you and Oliver.

MightBeMad Sat 29-Jun-13 15:35:09

Well done Oliver!!! My thoughts as ever are with you all shiv. I hope he's doing well this afternoon x

HairyPotter Sat 29-Jun-13 15:38:45

Wonderful news! Well done Oliver xx

Thinkingof4 Sat 29-Jun-13 16:45:17

Oh that's great news shiv I was awake at 4am this morning thinking about you and Oliver. Really hope this is a turning point and things start to get a little easier for you all x

Oh fabulous news - what a strong, strong child you've got there, Shiv smile!

I am truly in awe at how fierce the will to live is in the tiniest, illest of babies... Well done, Oliver. I hope this will turn out to be the turnaround you've been hoping for.

I am keeping everything crossed x.

katydid02 Sat 29-Jun-13 20:52:55

Fantastic news smile He's a superstar, yes - and it sounds like you are too.

plonko Sat 29-Jun-13 21:08:55

Shiv I just wanted to post and say you are amazing. So glad the op went well, Oliver sounds like a stubborn little fighter flowers

Zhx3 Sun 30-Jun-13 13:55:40

Great news smile. flowers for you all x.

Cheeseandbread Sun 30-Jun-13 22:17:36

Shiv Great news for the little fighter! Well done Oliver. I will continue to keep him in my thoughts and prayers xx

SundaySunshine Mon 01-Jul-13 14:08:43

Fantastic news Shiv grin so so glad it went well, hope the op recovery is going well too. How are you and MrShiv holding up? Xx

Supershiv1 Tue 02-Jul-13 09:38:52

Soooo the plan is to wean his pain relief, get him back to full feeds and get him off the vent. He's had amazing gases since the operation and is already on extubatable pressures and is in air -30% oxygen at different times.
Love him so much, this has to be the break we/he's been waiting for xx

Cheeseatmidnight Tue 02-Jul-13 09:45:03

Thinking of you and sending love xxx

Thinkingof4 Tue 02-Jul-13 10:00:46

Sounds really positive shiv will keep you all in my thoughts

MiaowTheCat Tue 02-Jul-13 12:18:03

Fantastic news Shiv!

Christelle2207 Tue 02-Jul-13 12:42:55

such good news

MrsRoss26 Tue 02-Jul-13 13:07:49

Great news shiv! Keeping an eye out for more updates as they come, and hoping Oliver continues his fab progress smile smile

dinkystinky Tue 02-Jul-13 13:16:39

Wonderful news Shiv - so delighted for you and Oliver and all the family. Keeping everything crossed his amazing progress continues apace.x

MightBeMad Tue 02-Jul-13 14:05:27

Great news that Oliver has a good few days. Come on little fighter!!

Cheeseandbread Tue 02-Jul-13 15:13:34

Well done Oliver! Xx

Isitme1 Tue 02-Jul-13 15:30:50

Aww thats great hes getting better
X

MrsMillions Tue 02-Jul-13 15:37:01

Fantastic news Shiv - SuperOliver really is a fighter. xxx

Oh Supershiv, I'm blaming the hormones, but I'm so happy that SuperOliver is doing so well I just cried. blush You must be so thrilled will him. Go Oliver! Sending you more strength for the next step. x

lia66 Tue 02-Jul-13 17:52:15

Oh shiv I've been following your story, I am absolutely thrilled to see this update. Oliver is such a little fighter. My thoughts are with you and your family x

shelley72 Tue 02-Jul-13 17:55:30

Fab news that Oliver is doing so well. Long may it continue x

Wonderful news, so good to hear. You are still all in my thoughts.

BoreOfWhabylon Tue 02-Jul-13 18:55:57

Fantastic news!

Mama1980 Tue 02-Jul-13 19:04:38

Yes! So happy for you well done Oliver you little star grinxxx

KateCroydon Tue 02-Jul-13 21:16:33

Go Oliver!

Supershiv1 Wed 03-Jul-13 13:18:59

Oliver is on cpap.
Oliver is on cpap!
Yippee eeeee!
And he looks so relaxed with it too xx

Thinkingof4 Wed 03-Jul-13 13:28:05

grin yeah go Oliver!
Really happy for you shiv

thomasmad Wed 03-Jul-13 14:14:37

Well done little Oliver!! Fab news for you all. Have been following this everyday for updates. Once our boys got onto cpap they made really good progress. Take care x

cordiality Wed 03-Jul-13 14:31:55

Just a quick delurk to say yayyyy! What an amazing little boy!!!

Go Oliver!

dinkystinky Wed 03-Jul-13 15:14:23

Way to show them how its done Oliver x

GaryBuseysTeeth Wed 03-Jul-13 15:23:09

Great news, he sounds like such a tough little cookie, go Oliver!!
Thoughts are with you & your family Shiv, look forward to the next positive update. x

MightBeMad Wed 03-Jul-13 15:29:17

Yippee!!! Go Oliver!!!

VinegarDrinker Wed 03-Jul-13 16:27:25

Fab news!

Beginningofthejourney Wed 03-Jul-13 17:01:53

Great news Oliver, keep up the good work!

Mama1980 Wed 03-Jul-13 18:18:30

Yay Oliver! gringringringringrin

MiaowTheCat Wed 03-Jul-13 18:34:19

Oh brilliant! You keep at it little fella - we want you taking over the world by the time you're 1!

McKTastic Wed 03-Jul-13 19:10:39

Brilliant news Shiv grin Well Done Oliver!

OhBotheration Wed 03-Jul-13 19:24:19

Excellent news Shiv smile <does a little dance> And well done Oliver, you little star! x

mymatemax Wed 03-Jul-13 21:31:34

YIPPPEEE!!!

headlesslambrini Italy Wed 03-Jul-13 21:48:21

fantastic news

Go, Oliver, go!! <waves pompoms>>

I am so hoping he's turned the corner you've been waiting for x.

SundaySunshine Fri 05-Jul-13 09:58:12

Oh brilliant news grin well done Oliver!! <jumping up and down with glee>

Supershiv1 Fri 05-Jul-13 23:58:30

Last Friday I thought I would loose my baby boy.
A week later he is on cpap and hasn't had a brady since coming off the ventilator.
Still not all plain sailing as his broviac line is leaking and they're trying to get a surgeon from Alder hey to come over tomorrow to take it out.
Despite everything I held Oliver today and he went 'rooting' for my nipple, gave a few licks and tried to suckle.
This is a massive milestone for a little man who makes mummy very proud. X

Zhx3 Sat 06-Jul-13 00:07:15

Great progress Oliver! What a star.

DIddled Sat 06-Jul-13 00:12:09

Just speed read the thread. So so pleased and a bit teary!! Hoping onwards and upwards from here- I'm going to pray for you all every night - I promise.

Love to you , your husband and baby Oliver- little hero he is xxxxxx

Fizzyfuzzy123 Sat 06-Jul-13 05:42:12

Hey shiv! This is fantastic and it's fab that he's rooting for the nipple! That's such a great achievement! Oliver's are strong! Mine was and yours is too . Love to you all x

VinegarDrinker Sat 06-Jul-13 09:20:04

Really great news shiv

evelynj Sat 06-Jul-13 09:33:54

Hey Shiv,

That's amazing, I'm delighted for you-keeping fingers crossed for further progress updates smile

lia66 Sat 06-Jul-13 09:34:43

Bloody amazing new shiv. Leaky eyes here :-)

Onwards and upwards. Thinking of you all x

dinkystinky Sat 06-Jul-13 09:41:07

He's really turned a corner hasn't he? Well done Oliver - so proud of you! Hope the Alder Hey surgeon today removes the line and his progress continues in leaps and bounds x

HalleLouja Sat 06-Jul-13 11:19:30

Well done Oliver and you too Shiv.

Thinkingof4 Sat 06-Jul-13 12:43:28

Brilliant shiv I'm really happy to hear he is doing so well. And rooting too!!

CelticPromise Sat 06-Jul-13 13:17:16

I'm on holiday and have missed a few updates, how brilliant to log in and get this news. Go Oliver!

Floralnomad Sat 06-Jul-13 15:25:14

Great news that he is continuing to improve . Best wishes to you all x

MrsMillions Sat 06-Jul-13 16:23:27

Wonderful news Shiv. The moment he went nipple hunting must have been very special. X

MiaowTheCat Sun 07-Jul-13 09:00:19

Oh isn't he a little trooper!

AWhistlingWoman Sun 07-Jul-13 09:12:35

Yay for Oliver and flowers for Supershiv!

mymatemax Sun 07-Jul-13 17:04:12

Awwwww fantastic!

That's fabulous news! Well done Oliver for everything and especially for the nipple hunting!

Christelle2207 Sun 07-Jul-13 21:16:04

Such good news. At my nct class I heard of a boy born at 24 weeks. Like Oliver he had a bad first few weeks. He's 7 now and thriving. X

Supershiv1 Mon 08-Jul-13 11:20:04

Oliver is 3lb and progressed to a hot cot yesterday!
Still in ICU, but I can kiss his face xx

Go Oliver!
So pleased to hear about his progress. The fact that you are now able to kiss that gorgeous little face is just fantastic grin

MiaowTheCat Mon 08-Jul-13 13:22:11

I bet you think he's huge now he's all of 3lb!

Mama1980 Mon 08-Jul-13 13:36:09

Wonderful wonderful news! grin Oliver your a lil superstar!
I bet 3lbs seems huge grin at over 6 1/2 months Alex still isn't 10lbs but he seems to enormous compared to what he was so I forget how small he is. X

Oh, how wonderful - I am sitting here like this -> grin

Go, Oliver, go! And enjoy lots of kisses from Mummy and Daddy <<melts>>

katydid02 Mon 08-Jul-13 17:39:11

That's great news smile
One of my DS's best friends was extremely premature, he's 8 now and is doing so well - and is a lovely lad.
So pleased to hear good news of your Oliver.

Dejected Mon 08-Jul-13 19:38:30

So pleased for you!

UnrequitedSkink Mon 08-Jul-13 22:53:56

That's lovely, hopefully he'll come on in leaps and bounds now. What a little star.

MightBeMad Wed 10-Jul-13 11:38:32

Yey for Oliver!!!! Thst's fantastic news shiv x grin

MichaelaS Wed 10-Jul-13 11:44:57

OH my word, how did I miss this thread for so long? I thought I had it on watch but obviously not. So sorry I disappeared and just at the time when things were looking grim.

I am so very pleased he is on CPAP and seems to have turned the corner. Sounds like his hernia was the problem all along. How many weeks total on the vent did he have? My DS1 did 9 which we thought was a lot but I think Oliver might have broken the record?

It is lovely to read about your kangaroo cuddles and him rooting for a nipple, now he is a bit stronger it sounds like this behavior at least is very neurologically normal!

Please keep us updated and I pray he goes from strength to strength from now onwards. Xxx

Badvoc Wed 10-Jul-13 11:46:53

smile
My eldest nephew was a 27 week prem. was in Scbu for 10 weeks.
His 10 this year and nearly as tall as me smile
X

Isitme1 Wed 10-Jul-13 16:15:42

Aww thats brilliant that hes coming on
Well done to both of you for not giving up
X

mymatemax Wed 10-Jul-13 16:46:21

3lb what a fattie!!! Well done Oliver x

clucky80 Wed 10-Jul-13 17:18:21

Wow that's fantastic, so pleased! X

SmellsLikeWeenSpirits Wed 10-Jul-13 17:24:12

Oh good, I've been lurking and sending quiet vibes. What a trooper smile

My vibes will keep coming

BeaWheesht Wed 10-Jul-13 17:27:03

Well done Oliver!

Ds has a friend who was born at 26 weeks in a lay by - she is 6 now and tallest girl in her class and is absolutely lovely smile

TwentyTinyToes Wed 10-Jul-13 19:16:07

Lost your thread so just read through with bated breath, so, so pleased to read that Oliver is doing better. Enjoy kissing him!

Thinkingof4 Wed 10-Jul-13 22:19:43

Brilliant to hear of more progress, really happy for you shiv

clabsyqueen Fri 12-Jul-13 15:58:34

Moving to a hot cot is such a wonderful step. Free access to kisses and nuzzles makes a big difference. Enjoy! Glad to hear about all this good progress.

Fizzyfuzzy123 Fri 12-Jul-13 18:10:22

Isn't it he best feeling ever when they get moved into a cot! I ended up hugging the nurse! So pleased for you x

SundaySunshine Sat 13-Jul-13 07:29:34

Ahh well done Oliver, what a milestone! Congratulations Shiv that must have been an amazing feeling. I've tears in my eyes! flowers

HairyPotter Sat 13-Jul-13 10:46:08

Excellent news! Go Oliver xx

Isitme1 Sat 13-Jul-13 14:18:57

Hope theres been more good news
X

Supershiv1 Sat 13-Jul-13 23:35:11

Saturday is weigh day and Oliver now weighs 1.565kg which is 3 & a half pounds. He's also 3 months old.
He's still in NICU but still on cpap and I have been having him out for cuddles every day. Not having any time off cpap as they want him to convert all his calories to weight gain.
Me and DH are staying at home together for the first time since he was born. Just me, him and the dog. It's nice but odd, like there's something missing.
Had our weekly review with the consultant and Oliver's left ventricular index is up quite a bit. WWaiting for this weeks headscan. Hope it's an anomaly.
Overall a good week. Xx

MichaelaS Sun 14-Jul-13 07:49:02

Fantastic news, well done Oliver. Hope the head scan is nothing to worry about. Mx

mymatemax Sun 14-Jul-13 18:18:13

Wow, sounds like he's going from strength to strength. I hope the scan is Ok, but just remember even if it shows something significant it doesn't always mean serious disability.
I hope you enjoyed your night at home... I bet you were itching to get back to Oliver today though. xx

Supershiv1 Sun 14-Jul-13 20:50:19

And today brought the news that Oliver is now on 3 hourly feeds and out of the hot cot, into a normal cot.
I might pinch myself!

VivaLeBeaver Sun 14-Jul-13 20:52:17

Amazing Oliver! Well done all of you.

De-lurking to say, Yay Oliver!! grin.

CelticPromise Sun 14-Jul-13 22:41:36

Wow. What an amazing boy you have. Well done family Shiv x

Isitme1 Mon 15-Jul-13 02:47:22

Ohh thats brilliant.
Take a moment to read the start of the thread and look at where you and Oliver have got to today.
Truly amazing!
X

lotsofcheese Mon 15-Jul-13 04:57:42

That's great news. Well done Oliver!

dinkystinky Mon 15-Jul-13 11:56:47

Whoop Whoop - way to go Oliver! So delighted with his progress. Keep astounding those Drs mr O x

dinkystinky Mon 15-Jul-13 11:57:55

Ps keeping everything crossed for the scan and some positive news.

KateCroydon Mon 15-Jul-13 15:59:03

Flippin 'eck. Go Oliver grin

Fantastic news, shiv! Go Oliver!

MightBeMad Tue 16-Jul-13 09:01:00

Only just saw your latest updates shiv - amazing news!!! Go Oliver!!!

VinegarDrinker Tue 16-Jul-13 09:03:26

Really good to read your latest updates. Fx for the scan.

circular Tue 16-Jul-13 17:53:14

Wow, several corners turned in last few weeks. Keep up the good work Oliver.

Mama1980 Tue 16-Jul-13 18:00:16

Amazing well done Oliver! Xxx

lia66 Tue 16-Jul-13 21:15:56

Amazing news shiv. Well done little fella x

QOD Tue 16-Jul-13 21:27:35

grin

MrsMillions Wed 17-Jul-13 10:04:52

Wonderful news Shiv, well done Oliver. grin

Isitme1 Thu 18-Jul-13 11:14:50

How was the head scan?
Hope all is well
X

Supershiv1 Sat 20-Jul-13 00:29:25

Phew! Not had chance to draw breath between cuddles, winding, nappy changes and poking my nipple in Oliver's face (only non nutritive exploration allowed - he has to save his calories for growth and breathing).
Head scan - ventricular index still enlarged but no massive increases disproportionate to growth - yay. If I'm honest I know that means that on top of the brain bleeds he may have more problems when older but don't care at this moment in time. ...........because. .........we got moved to HDU!!!
Next steps.......time off cpap.
Go Ollibobs go!

Supershiv1 Sat 20-Jul-13 00:30:12

Ps
Oliver is 100 days old on Sunday xxx

MightBeMad Sat 20-Jul-13 00:40:14

Fantastic news shiv!!!

CelticPromise Sat 20-Jul-13 07:57:51

Ah that is great news. How are you managing expressing and stuff? Is there good support in the unit?

Happy 100 days Oliver. My boy got a card from the nurses at 100 days I think smile

Supershiv1 Sat 20-Jul-13 09:01:39

Expressing - I use the hospital pump. Have slowed down since the early days as I have had to start using the catering freezers!

MikeLitoris Argentina Sat 20-Jul-13 09:06:06

De-lurking finally to say YAY! for Oliver. He is doing so well.

Keep up the good work!

CelticPromise Sat 20-Jul-13 17:18:07

Ha I remember that, they asked me to keep mine at home in the end. Am now an expressing/bf supporter on my local unit, maybe there's someone who does similar on yours? Long term expressing is hard. Sounds like you're doing a great job smile

McKTastic Sat 20-Jul-13 18:47:07

Ollibobs gringringrin - v cute!
Fab latest update. Go Team Shiv!

Dejected Sat 20-Jul-13 19:06:45

Fab news!!!!

SundaySunshine Sat 20-Jul-13 19:45:11

Ah brilliant news Shiv. Way to go Oliver!! grin and happy 100 days for tomorrow xx

MiaowTheCat Sat 20-Jul-13 20:25:40

Keep going not-quite-so-little-now fella!

You've even got my DH rooting for him via me now btw!

KateCroydon Sat 20-Jul-13 20:26:29

What was that about chewing up the rulebook and spitting it out? Three cheers for young Oliver. gringringrin

thomasmad Sun 21-Jul-13 00:12:52

Excellent news Shiv!! another one here following Oliver's progress and hoping that all was well for you. Another step closer to home. Do remember to try to rest if you can. I know it is very, very hard. Really pleased for you.

Happy 100 days, Oliver!

MichaelaS Sun 21-Jul-13 15:19:36

Well done Oliver, fantastic news!!! HDU amazing!

Don't worry about brain probs just yet, so much developmentally is about feeling loved at this age, cuddles and talking to him and still touch are giving his brain lots of encouragement to grow through the damage and fix itself. Specific therapies can target particular problems if any emerge eg physio for CP, speech and language, brushing and deep tissue pressure for sensory issues.

You are on the home straight now... Time off CPAP will come, more growth and in a few weeks or a couple of months it will be home time! And all that amazing milk will keep him healthy and germ free over his first winter, which will protect those growing lungs. Well done Oliver and well done his amazing mummy!

RedKites Sun 21-Jul-13 15:31:41

Well done Oliver and flowers for you.

Cheeseandbread Wed 24-Jul-13 10:30:49

Well done Oliver! Sounds like he is doing really well xx

SlouchingPanda Fri 26-Jul-13 00:02:56

How are things in Team Shiv? Congratulations on 100 days grin

HappySmileyFace Fri 26-Jul-13 01:20:52

Well done little Oliver! All over the world people are cheering for you right now.

Supershiv1 Fri 26-Jul-13 18:39:03

Hello. Just come upstairs from cuddling Oliver whilst he had an hour off CPAP on nasal cannulas grin
He's having 3 x 1 hour off a day on .3 litres of oxygen. This goes up to 4 x 1 hours tomorrow.
His steroids were finished on Sunday and we've noticed his oxygen requirements on cpap have increased from 28% to 38%, but we can cope with that.
He now weighs 4lb 4oz (1.945kg).
He is also looking for stimulation when awake as he's term and my due date was tomorrow.
Thank you for seeing me through the dark days. It's not over yet, but I can see my light at the end of the tunnel x

MikeLitoris Argentina Fri 26-Jul-13 18:42:30

Its so good to hear you updates shiv

Keep up the good work Oliver!

TwentyTinyToes Fri 26-Jul-13 18:47:39

Go Oliver! Delighted to read your latest updates. You sound like a lovely mum. X

Thanks for the update, shiv. I often find myself wondering how Oliver is doing at the most random times. It's great to hear he & you are doing well.

lia66 Fri 26-Jul-13 19:33:47

Oh shiv. It must be quite an emotional time for you this week, I know you and I share other friends off here too.

Oliver is doing so well and you are being so strong. It's lovely to see your positive updates. Look after yourself x

whymummywhy Fri 26-Jul-13 19:41:13

Just seen your thread OP and wanted to say that a dear friend of mine also had a 25 weeker who had bleeds, lots of surgery and a shunt and is now a strapping bilingual 8 year old!

KateCroydon Fri 26-Jul-13 21:50:33

Oliver cuddles!

thomasmad Fri 26-Jul-13 22:20:24

Well done Oliver and Team Shiv!!,
It sounds like you are all doing well and before you know it, they may be suggesting "home" which will be brilliant and you will think "am I ready, do I want to leave?!!". I kept all the cards our boys had from SCBU. The two batches!! the first tentative "thinking of you/ praying for you" ones, and then the "You're home ones"!!! They still make me smile and have a few tears. But I wish I had kept a diary. You will have this thread to look back on... and I finally got the balloon and flowers I wanted when the boys made it home! It is the silly things that get to you - I was on the maternity ward once our boys were transferred and everyone had balloons and flowers and I had worried texts and "thinking of you" cards. Well done Oliver, Well done Oliver's family .

Christelle2207 Fri 26-Jul-13 23:09:44

Well done such positive steps. I am due next week and have been thinking a lot about what you must be going through.

MiaowTheCat Sat 27-Jul-13 09:00:49

Continued awesome news...

Please though, take care of yourself hitting the due date mark - I found it sent me into an absolutely unanticipated tailspin (and we've been through nowhere near what you all have)... just be ready for it - and give him a cuddle from us all.

Cheeseandbread Sat 27-Jul-13 17:20:23

Great to hear the positive update Shiv well done Oliver!! Xxx

Isitme1 Sat 27-Jul-13 22:58:41

Well done!!

SlouchingPanda Sun 28-Jul-13 18:08:11

Nearly 2kg! Fantastic stuff! You never fail to amaze me with your resilience - Oliver is a lucky boy to have such a strong mum and dad.

Hope you are coping okay through the weekend, flowers to Oliver for his due date.

Supershiv1 Tue 30-Jul-13 10:53:53

Hi all. Due date was fine. The royal birth was the one that got me as I always thought early on that Kate and I were hitting so many milestones together.
But over that now.
Oliver has again put on weight and is 4lb 12oz. He put on nearly a lb in a week - which although good is a little worrying.
He's having a groin scan today as his man bits look a bit swollen again. We're hoping it's just excess fluid (which might also explain the increase in o2) that can be treated with diuretics. Please God it's not the return of the hernia. We were told that there would be a possibility it could come back, but I didn't think so soon.
He had his first bath yesterday and promptly poohed in the water. And he is having a go on a bouncy chair when he's awake xx

mymatemax Tue 30-Jul-13 11:08:18

Well done Oliver!! DS2 o2 needs always went up with a big weight gain, it was almost as if his body was growing quicker than his lungs were developing/recovering.
I hope Oliver likes the bouncy chair, its lovely when you get to do some of the normal baby things, even if its with tubes & wires attached.

Take care of yourself, try to get sleep & rest when you can & crying is normal & good. All the weeks & months of stress & trauma HAS to come out & will keep coming out for a while yet.

thomasmad Tue 30-Jul-13 13:06:50

Hi Oliver and Shiv,
Good progress, hope that the diuretics work.What a milestone! first bath. Brilliant news. I second what mymatemax says about everything catching up with you, so take care.

clabsyqueen Tue 30-Jul-13 23:58:59

Lovely news to read supershiv. You've all come a long long way since the start of this thread. I'm so pleased for you!

mejypoo Wed 31-Jul-13 18:07:17

Brilliant news. Well done Oliver and Shiv!

clucky80 Wed 31-Jul-13 20:45:45

Brilliant news, so pleased to see this. Take care x

beatofthedrum Wed 31-Jul-13 21:07:01

You are both incredible Shiv, you and your little boy xxx

lia66 Thu 01-Aug-13 11:58:23

inspirational storythrilled little Oliver is doing so well x

Supershiv1 Fri 02-Aug-13 09:16:27

The scan showed that his bowel is as it should be - yay!
He's now off cpap 3 x 1.5 hrs a day on .5 oxygen on the nasal cannula.
He put on more weight and is now half an ounce off 5lb. Diuretics are being optimised so hopefully he pees out some of the fluid and his o2 requirements come down again (reassuring to read your comment mymatemax).
He was saturating well around 30% on cpap, but that's gone up to 43% with the weight gain and end of the steroids.

Great scan news, shiv! Go Oliver!

TwentyTinyToes Fri 02-Aug-13 10:01:34

Go Oliver!! What a star. X

bemybebe Fri 02-Aug-13 10:09:24

Go Oliver! What a journey, good luck to all your family Super!

Wereonourway Fri 02-Aug-13 10:14:43

Wow, excellent progress!

So pleased for you Shiv. I've got a tear in my eye.

What a strong little boy Oliver must be, and you too.

When ds was in nicu a consultant told me all prem babies have a corner to turn and it sounds like Oliver has turned it.

Great news

thomasmad Fri 02-Aug-13 20:55:48

Great news!! so pleased for you.

xigris Fri 02-Aug-13 20:58:50

Bloody fantastic! So pleased for all of you xx

IKnewHouseworkWasDangerous Fri 02-Aug-13 21:06:20

This is the first tine I have read this thread. What an amazing little fighter you have there.

KateCroydon Fri 02-Aug-13 21:45:29

Happy dance for Oliver's bowels.

Picture? Of Oliver, not the bowels.

Supershiv1 Sat 03-Aug-13 00:14:18

I can't add picture on here, but if you search pop n grow on facebook he is the baby with the blue mittens. Xx

Supershiv1 Sat 03-Aug-13 00:15:32

Ooooh also he had a go on his first bottle today, he was only supposed to have 5ml but he did so well we gave him 10ml - naughty mummy and daddy x

KateCroydon Sat 03-Aug-13 05:16:51

Aaaah. He is very cute. He must look very different now though? And yay to 10ml.

Wereonourway Sat 03-Aug-13 08:03:04

He is beautiful Shiv

xigris Sat 03-Aug-13 19:30:34

He is super cute! Congratulations!

LaRosaBella Sun 04-Aug-13 22:37:24

Awww he is so amazing!

cheekbyjowl Mon 05-Aug-13 21:49:46

I was just wondering how oliver.was doing and found this thread. an answered prayer. well done family super grin

Cheeseandbread Tue 06-Aug-13 05:57:20

Such good news that Oliver is doing so well! Xx

Poppet45 Tue 06-Aug-13 17:15:30

Another longtime lurker herdoing a happy dance for Oliver. Also just read about the diuretics. Are they chlorothiazide or spironolactone? Dd who was a 27 weeker had them for about a month but was readmitted a couple of weeks after discharge with an awful rash spreading up her face. She was put in isolation with a suspected staph a infection but it was an acute zinc deficiency caused by the diuretics, her prematurity and because she was being exclusively breastfed. Took our hosp two scary weeks to work it out but as soon as she was put on zinc it faded away. Its rare but keep a wether eye on anything like it. Hugs to you all x x

Supershiv1 Wed 07-Aug-13 00:28:52

Pants pants pants.
Oliver's o2 requirement on cpap is now around 65%.
He seems really colicky and unsettled so we've started him on infacol.
He weighs 5lb 8oz and is having 2 sessions off cpap on nasal cannula but seems to be tired. His o2 requirement on the canula has gone up to 1 litre. We won't be transferred back to our home hospital until he can do 4 hrs off comfortably, but I'm really concerned about his increased o2 requirements.........He's had a couple of bad desats where he has gone grey in my arms and seems to take ages to come up.
Argh!!
He's 41+3.

Supershiv1 Wed 07-Aug-13 00:30:11

Diuretics-he's on spiro and fruisimide (sp?)..

EugenesAxe Wed 07-Aug-13 06:55:39

What an amazing history of Oliver's start in life - I only just saw the thread. I'm sorry to hear of your most recent setback and hope it's sorted soon.

Really good luck to Oliver and best wishes to you & your husband.

mymatemax Wed 07-Aug-13 20:25:30

Is he on Gavison or any reflux meds.
DS2's O2 really didn't stabilise until his reflux was under control silent reflux in to the lungs is a nightmare for prem babies.
It was the most simple thing to treat but it was a nurse that sussed it not a doctor in DS2's case.
& it wasn't directly after feeding either, it depended on his position as to how his feed was absorbed.

Its shit when it feels like 1 step forward 2 steps back, hang in there, he will get there.

Poppet45 Wed 07-Aug-13 20:36:40

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 sad 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 Wed 07-Aug-13 20:46:50

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 Wed 07-Aug-13 23:07:46

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 Sat 10-Aug-13 06:33:57

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 Sat 10-Aug-13 23:48:13

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.

Supershiv1 Mon 12-Aug-13 00:24:17

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

KateCroydon Mon 12-Aug-13 04:40:11

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.