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 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.

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