What do I do now?

[ImissMiniPop]

Hello, my little boy was born 30+2 on Monday, I've been discharged today but he's still in NICU. And I don't really know what to do now?

What do I need at home, I've got to express so have a breast pump on delivery tomorrow, but do I need a steraliser for the milk collection bottles, or can I just use the ones I can get from the hospital.

I don't even know what questions I should be asking the nurses looking when I speak to them...

Any top tips or advice would be really appreciated.

[misslinnet]

I got milk collection bottles from the hospital, they had sterile-till-opened single use bottles that they gave me.

You will need a steriliser for the washable parts of the breast pump.

Difficult to know what questions you should be asking the nurses without knowing if there's anything you're particularly concerned about.

We tended to ask how DS had been overnight, and we read his notes when we came in too. If there was anything out of the ordinary / confusing in the notes we asked questions.

Some hospitals let you pay reduced parking fees if your baby is in NICU, I would ask them about that. Our hospital also gave us money off vouchers for the hospital canteen.

[MuckingFuddle]

Hi hope you and ds are ok. I second what misslinnet has suggested.

Our dt's were also born at 30 weeks and the first week or so was very full on and a bit of a blur. I didnt really know what questions to ask either. If there is anything it might be a good idea to jot it down - I needed to because I kept on forgettting then remebering when I got home. The monitors, bleeping and medical terms soon become normal.

If family/ friends ask if they can help - meals to go in the freezer are a big help. It is very tiring being at the hospital all day and the last thing you want to do when you get home is cook.

I used to pop a muslin square under my t shirt so it smelt of me and use it as a blanket in their incubaters. I also used to take it home and smell it while I expressed - cant beat that baby smell.

Take lots of photo's this time next year you wont beleive he was ever this tiny.

Good Luck x

[ImissMiniPop]

thanks so much for the replies. :) I've only been home an hour and am already a blubbering wreck of tears, hormones and snot at the moment, and can't think straight.

MuckingFuddle are you DTs all ok now?

He is so teeny tiny and I feel so bad putting the poor little mite through all this stress when he should be safely tucked up inside me. :(

[MuckingFuddle]

Imiss - you have not put your ds through anything this is not your fault. It's a cliche but these things just happen. Please dont blame yourself.

Dt's are fine now - coming up to their 2nd birthday no problems what so ever from prematurity, although they both suffered with reflux when they were younger - very common with prem babies. They were in hospital for 5 weeks.

It is very hard - going home each night and leaving your baby behind. I know there is nothing I can say to make it any better. Just try to take each day at a time. Every night away from him is another night closer to getting him home.

I found things got a bit easier when they were out of NICU and in to HIDEP / SCBU. It is quiter in there less emergencies going on and you can get more involved with their care.

How is he doing ? Are you getting much RL support ?

Good Luck x

[kentDee]

Congratulations on your new arrival.

My babies were born at 32 weeks so I know what your going through ( but I had 3 in scbu)

I took the night phone number from the staff so I could ring them early hours just for piece of mind. I also expressed and left a muslin/ top in each of their incubators.
The nurses took lots of photos of me with them most days and some from their own camera and put it in a special card holder which I now have as a keepsake.

I really wanted to be involved and felt very emotional leaving them everyday, so I asked the staff if I could change nappies and change their clothes into things I brought myself. This will happen in time ( when they are stronger) but it made me feel like I was doing something because it can sometimes feel like the nurses are doing everything and you feel left out.

Hope this helps.
Lots of luck xx

[ImissMiniPop]

thanks for the messages, I need to get something to leave in his incubator, I've been too scared to do it so far for fear of passing on germs. He's ever so tiny, but he's doing well so far. He's put on a little bit of weigh, and have been moved from NICU to SCBU today, and is only on one monitor now. He has to have a little shot of caffeine, and he is due a head scan this week, so we just have to see if that reveals anything.

I still feel shattered from all the events and have been desperately trying to express, but I'm so tired it's taking ages and I'm expressing such tiny amounts.

I've helped change a nappy, and he finally got to wear some clothes today, but I'm still really nervous and scared around him as his is so tiny and he really doesn't like being touched (I can't blame him!). :)

[clabsyqueen]

Congratulations miss! My lady was born at 28+3 660g. Turns 1 next week and is right on track for her corrected age (9 months) although still tiny (the size of a 4 month old). Keep on with the expressing and grab any nurse you can for advice if you find yourself struggling - ask if your hospital has a developmental team. They think about speech (sucking) movement and all the 'softer' stuff. Can really help make you feel that are contributing to your baby's development. I really focused on using rolls of soft fabric to support her position and made sure she had a big dark towel over her incubator (day/night cycles are not needed until at least 36 weeks) do that she was in a more womb like environment.

[clabsyqueen]

About the touching - my lady didn't like it either do I read and read and read about it. Basically no stroking or light feathery touches as they would not get that in the womb and it can be over stimulating. Firm but gentle cupping of the head and body is best. So pull up a chair and pop your hands in and leave them there! I must have spent a thousand hours doing this in the 3 months my daughter was in the NNU. good luck and be patient.

[misslinnet]

Good to hear that your baby's been moved from NICU to SCBU

It can take a while for your breasts to get going and produce lots of milk with expressing - it took me almost 3 weeks before I was managing to express enough milk for all DS's feeds.
Just remember that even a little bit of breastmilk is good for them.

And clabsyqueen's advice about touching is just what the neo-natal nurses said to me & DH when DS was born.

Good luck for the head scan.

[nickseasterchick]

Congratulations!!

Its not only teeny tiny babies in scbu 18 years ago my ds1 was there .....he weighed 9lb 3 oz and the outlook for him didnt look good .....hes a strapping 6'2 law student now though .

It seems so very difficult now for you but in a few weeks when you have your bab at home it wont be so bad and you have the rest of his life to love him.....best of luck for the head scan my ds had one too.

[slacklucy]

Congratulations!!
Its good to have a good cry & sob when you get home.. I used to cry every evening driving home from the hospital.
DS2 was born at 28 wks & the first few weeks were a bit of a blur.
Ask whatever comes in to your head at the time, no questions are silly, you need to know & dont worry if you need to ask the same questions over & over... you've got baby brain :)
I always made sure i was there by consultant rounds each morning so was able to hear the handover from nurses etc & any plans for the day, it als gave me a chance to ask the consultant questions.
Remember he is your little boy, they are just giving him some extra medical care, so if you're not sure what they are doing or aren't happy with something please ask.
Make sure you take loads of photos, they are still your baby's first days/weeks.
Take advantage of any opportunity for cuddles its ood for both of you.

[ImissMiniPop]

thanks so much for all the replies, they do make me feel a bit better. It feels so lonely, so it's reassuring to read all your messages.

I had a kangeroo cuddle today for half an hour, which was lovely as he was quite upset about having nappy and babygrow changed, but as soon as he was down my top he settle to sleep. He's only able to come out for half an hour, but it was nice to cuddle him.

He should have had his head scan this afternoon, although no one knew what time it would be. So fingers crossed I can find out tomorrow if it showed anything up.

[Mama1980]

Hi congratulations pleased to hear your babe is out of nicu. My ds was born at 26 weeks very traumatically. My ds loved to
Be touched they used to have to put him on me to stabilise his heart sometimes but I don't think that's normal. I would just focus in enjoying the kangaroo care when u can. I second the darkness remember he wouldn't be outside yet and early day/night cycles can be disturbing for them I think. The other thing I did was read to my ds constantly-Jamaica inn and Jane eyre -remember that if you were still pg they would be hearing your voice all the time plus it gave me something to do. Keep going with the expressing it took about 2 weeks for my supply to come in properly but I went on to breast feed til ds was 3. The head scan my ds had initially showed a brain bleed but it sealed itself off so even if the scan shows anything it not necessarily really bad. Ds is now 4 and aside from being quite petite you would
Never in a million years guess how early and tiny he was. Best of luck I hope the dr has good news today.

[HalleLouja]

[Holds hand]

Its horrid leaving them but its the best place for them when they are teeny tiny. My DS was born at 34 weeks and spent time in SCBU. It still makes me cry 4 years on the thought of leaving him but he is fit and strong now. Fingers crossed with the head scan. I was able to bf DS until he was over one - I think for me the whole him being tiny made me more determined to do it. I was lucky though he learnt to latch quickly.

[Gonnabe]

Oh wow - you are doing so well. My little man was born at 25 weeks and was tiny too. It's so scary to touch them it the nurses would only ever let you do what's best for babe. My DS is 13 months actual now and when he's unsettled I still put a hand on his bum and one on his head and he calms down. I think it's called containment hold?? I just wanted to send you a virtual hug. X

[ImissMiniPop]

Thanks for the hugs/hand holding :) they are appreciated and needed.

Expressing is still a stress, as I'm just not producing enough no matter how long or short I leave between sessions :(

But MiniPop (that's his nickname) is doing ok, he's put on a tiny bit of weight, but is doing so very slowly. Had more cuddles today and the nurse show me how to handle him and move him in the incubator, which was nice.

And he pooped on me when I changed his nappy :o

No one seems to know if he's had a brain scan, which is a bit annoying but am going to try and find out for sure tomorrow.

[clabsyqueen]

Hooray! You've been pooped on. A rite of passage for mums everywhere. Good that you're man is putting on weight but I remember it was painfully slow for us. Up 12g one day down 6g the next. They stopped weighing her everyday as I was getting so obsessed about it. I'm sure you've been given so much advice about expressing but heres my experience. Did zero for first 2 days (total shock) then massaged ineffectually for a day. Produced zero. Milk 'came in' after 4 days but this just seemed to mean rock hard boobs and very little actual milk. Got hospital grade Pump on day 5 then expressed every 3 hours all day every day for about 3 weeks. Then managed to have slightly longer sleeps at night once milk was established. For about 2 weeks I never got more than 20-30ml per pumping session and in fact I got almost no milk for about 2 days when I started pumping. I was told to just keep going building up from 5 minutes a boob to 10 minutes a boob. Eventually it would take 15 minutes on each side to get about 60ml altogether. I started double pumping as half an hour every 3 hours was getting ridiculous. This did help increase my milk. God it's hard hard work but don't give up just yet. Sounds like you're holding it together. Well done you!!!!

[floozietoozie]

Congratulations on your DS. My DS was born at 31+4 and was in for five weeks. The expressing was hell as my milk never did come in properly no matter what I did and was the most upsetting part of the whole experience at the time. I felt like I was running on a hamster wheel to try to catch up with the increasing amounts of formula and just couldn't. However, ds did get some breast milk from me (proportionately quite a bit in the beginning when he didn't need so much) for five months, even if in the end despite my absolute best efforts he was mainly formula fed. I just want to say to you, try not to beat yourself up about it if you have the same experience. Your body has suffered a massive shock and it may just not function as you would want it to. Remember that formula was originally devised for premature babies and those who had feeding difficulties, and although I felt like he was getting poison, it really isn't, and bfing is not the be all and end all of motherhood although it can feel like it in the beginning if it's what you have planned to do. My ds did have complications that were unknown at the time he was in scbu and when I eventually found out about it, it certainly put exclusive bf into perspective in the grand scheme of things! I had the same experience with my dd (also prem although she could bf much better than ds, but again I ended up having to supplement, although a lot less - I am just one of those people who doesn't produce much milk, possibly because I have endometriosis and ovarian cysts which can bugger up your hormones.) Incidentally, if your milk supply doesn't increase, you can try a drug called domperidone which supposedly has a side effect of producing breast milk. Again, it didn't work for me but it does for some people. I hope you don't think I'm trying to put you off expressing and bfing, quite the opposite, but just want to offer a different experience from some of the people here who were luckier than me with it. I found it really depressing when I was going through it that everyone else who wanted to bf a prem seemed to be able to do it.

Can I also recommend going on the Bliss website if you haven't done already. There is a forum where you will find other people going through the same experience right now which may be helpful if you have the time, and lots of advice too. When I was in scbu, I found it useful to have a little notebook to write things down in, such as how ds was doing, the nurses' names (as they changed every day!) and even how much bm I had expressed and at what times. I also wrote a little bit about how I was doing so it was partly a diary as well. All the best for you all.

[ImissMiniPop]

Thanks so much for the advice clabs and floozie that's really helpful. I have been trying to express as much as possible, but it just doesn't seem to make a difference. If I express regulary (every 2 or every 3 hours) I hardly get anything, if I leave it longer I was starting to get more, but then it's dropped back down again.

I am so scared of MiniPop developing NEC if they give him too much formula that I really want to try to give him as much breast milk as possible. It's day 14 today so hoped that my milk might be getting more established, but it's still as erratic as ever.

I am signed up with Bliss, thanks floozie the responses on there have been great, and have helped reassure me. Good tip about the diary, I think I might do that. the last 14 days have passed by in a complete blur. I've taken pictures daily so I can see how well he's growing, even if the number is going up slowing.

[clabsyqueen]

Nice to hear from you. NEC is terrifying. No doubt about it. My lady had it. Can't say I didn't fall completely apart especially as it was on week 8 and I thought we were almost out the door. She had other ideas. It was put down to the fortifier they added to the breast milk and the gazillion supplements she was getting. Too much for little tummy to cope with. She didn't need surgery just 10 days nil by mouth and a long line put in. Pure torture but did the trick. Lots of babies with NEC do need surgery and do well but it's terrifying for sure. The bigger he gets the less likely it is and usually after 2 weeks the risks are much lower I believe. They were VERY surprised when my LO developed it at 8 weeks old. Try not to worry about things that haven't come along. You have enough on your plate and dealing with one thing at a time is the only way to stay sane. Stay in touch

[PeelingmyselfofftheCeiling]

Hey IMiss, congratulations on your MiniPop. I pumped for 7 weeks for my twins, I never got enough for them to be on 100 per cent EBM but as soon as my supply started dipping I got an emergency docs appt and went on Domperidone, which I actually stayed on for 6 months so I could mix feed once they came home.
All the things they will normally tell you to do to boost your milk supply - pump frequently, skin to skin, warm baths, rest, no stress, good food (jury's out on whether these last 3 make any difference, but from my experience I would say they did) are totally IMPOSSIBLE with a NICU baby when you're scared, shattered, and sitting on an uncomfortable chair eating crap food with no privacy for weeks on end. So if you decide to get some drugs to help boost your supply then don't feel guilty! There are various herbal teas and things that are supposed to help too, but I went straight for a prescription and it enabled me to get some breast milk into them for a good while.

[ImissMiniPop]

thanks clabs I know I am being stupid worrying about things that haven't happened, but I've honestly had the worse 12 months ever and I am so very scared of things going wrong. :( I am trying to stay focused on the positives though.

Peeling thank you so much for your words. After an emotionally rubbish day, it's nice to read them. I got some Domperidone yesterday, after I broke down in tears in front of the nurses when I handed my milk over on Monday.

I've also started writing down each time I express and how much, so I can actually see how much I'm producing. I think today I left enough breast milk to last him until 11am tomorrow morning :o

I am trying to express every three hours, to match his feeding pattern, and twice overnight - well around midnight, 4 and 8, but sometimes this is interrupted by being at the hospital, as I'm trying to get as much kangeroo time as the nurses will allow.

He seems so much more settled and content when he's asleep on me rather than in the incubator, where he fidgets and waves his arms and legs about. :)

[clabsyqueen]

That's brilliant if you've left enough for overnight and the morning at this stage. I've heard that Domperidone really helps so good that you are giving it a go. Mix feeding is definitely a way for you to stay sane as the clock ticks very loudly in your brain when you know milk is running out in the hospital fridge. You can drive yourself mad. It's ok to say - give a formula feed at lunch time and I'll be in by 2pm. I heard a few relaxed mums working out such schedules. I wish I'd had the option of mix feeding but I was told donor milk or my milk (severe IUGR really impacts on gut development) This meant i was always racing against the clock for at least a few weeks. Try to cut yourself some slack because your LO needs you to be sane when he comes home. Because he will come home and it will be before you know it! How heavy is he now?

[ImissMiniPop]

Thanks Clabs I'm gradually sorting the expressing out, very slowly. I was doing it every three hours, and it started to slowly go up (I literally mean by about 1 or 2mls) but then the breast feeding lady at the hospital suggested doing it 10pm, between 1am and 2am and then having a longer sleep and expressing again about 7am, so I tried this last night and got less out :(

I'm managing to take up enough for 5 or 6 feeds, so he's getting about 2 or 3 formula feeds a day, except today because I spent an hour expressing this morning and dropped the whole bottle on the floor it was heartbreaking. :(

He's 1.670kg, and is weighed twice a week now instead of every day, and it's weigh night tonight, so we'll see how much he's put on tomorrow morning :) Only trouble then is I need to make more milk :o

Despite being so teeny tiny, he's even started taking a bottle as he'd been rooting and starting to suck, so the nurses asked for permission to give him a dummy to help his cheek muscles and then if they could try him with a bottle (we said yes to both). He's had a go on the boob as well, but that's a bit much for him at the moment.

And he's been promoted from an incubator to a heated cot, although he gets very cold very quickly, and I'm a bit rubbish at changing his nappy at the moment, will get better though :):)

[clabsyqueen]

Sounds like he's doing very well. Heated cot and developing sucking. Well done little man! My LO wasnt in heated cot til 38 weeks and came home at 41 weeks weighing 1.9kg after a painfully slow weight gain so whatever you're giving him to eat it's doing him good.
Dropping that milk is just heartbreaking as bloody breastmilk defines your life at times like this but in the grand scheme of things he won't hold it against you! It sounds like you're doing a brilliant job and working very hard. He's lucky to have a mum like you. That's what counts in the end, not how much formula he got in neonatal (although part of being a good mum is worrying about these things obviously).