34+5 baby in SCBU - im struggling to stay brave

[captainshortie]

Hello all, sorry its kind of a long one...

So my waters went at 34+4 and baby was born the next morning. Very shocked but my pregnancy was very stressful so tbh in hindsight im not surprised....
I was in labour 3 hours (people keep telling me thats not long, well it still felt like an eternity) i got 2 minutes of skin to skin before she was whisked away to scbu at my local hospital (literally 2 minute walk from my house)
After a few hours i got transfered to the ward, and the dr came to see me telling md there was 'no room for her in scbu, we can only house 3 babies and she makes 4'
After being told I initially wasnt allowed to join her at the next nearest hospital, we were being whisked away by ambulance 5 hours after she was born. Id been discharged from my hospital and sent with pretty much no aftercare to the next.
Baby continued to be well looked after by everyone. Which i am obviously thankful for.

I got to stay the night but felt so alone, her dad wasnt allowed to stay.
Ive been up everyday since but the new hospital is half an hour drive away from where we live and neither of us drive so we're reliant on lifts off people.
Anyway, im currently 'rooming in' with her
My questions are...

• Shes currently under a UV light for slight jaundice. But shes my baby, can i pick her up when I want?

Im breastfeeding her, so know i can pick her up for feeds.

-what questions can i ask? If i ask too many will they think i cant cope?
Shes my first so I dont know what to do anyway and im relying on advice and some of my instinct but ive got no experience with babies...

-i cant seem to stop crying, will they be judging me on this?

Want to send you all the love and strength
My son was born at 35 weeks so I know how small they are and how scary it is.

1. Yes you can hold her whenever you want unless you are told otherwise.

1. Ask any questions you want. Their job is to answer and they will help you I promise. The nurses on the ward will be amazing and they are always kind in SCBU. There is a paediatrician who should come in the mornings for a round. Ask questions also then. ask them here as I am sure also there are many prem moms and dads who can give you their experience.

Does your baby have a nasal tube for feeding too or is it solely breast fed. I would be asking what their plan is for discharge.

1. crying is a normal natural human response to change, trauma, birth the lot.

I cried so much after having my son. This is not an indication you can't cope

Xxxx

Oh bless you, I cried a lot after having both mine for you xx

Oh lovey, my DD was born at 33+5, it's a scary time xx

Glad they've found you somewhere to stay - i was going to suggest you ask about Ronald Mcdonald beds as they are for mothers whose babies are at "not local" hospitals.

Ask the midwives about cuddles - DD had to be under the UV light for a certain length of time each day. One nurse discouraged me from holding her after she'd been fed, but i basically ignored that!

Ask the nurses to run through baby's notes with you - that's how i found out they were planning to bath her one day, so i asked to be involved. Also means you can understand what the milestones are for discharge - for my DD once medical issues had been overcome, they wanted to see her gain weight, (the consultants words were "she's a bit scrawny!") so i went all out on the breastfeeding and they gave her fortified breast milk through her tube at night. The nurses will know it's stressful for you, and their goal is to get you all home as soon as they can. Ask what you can do, she's your baby.

xxx

First of all, congratulations on your beautiful baby. Second, the crying is completely and totally normal. Nobody will be judging you on this and if you're struggling, there are charities out there such as bliss who can help if you don't feel able to ask the nurses for help for you. You've been through a trauma and you may find that you mourn the birth you feel you "should" have had. In reality every family and every experience is different and the fact that your baby was early and went to special care does not mean that your birth and newborn experience is any less valid or that you won't be able to bond with her. I actually think those early weeks just sitting cuddling, singing and reading to mine in nicu built an unbreakable bond between me and them.

Your baby will thrive the more cuddles she gets but with the jaundice in mind it would be a good idea just to ask the nurses if it's ok to pick her up whenever you want. If you need any help learning how to handle such a little baby then the nurses should be more than happy to show you. When mine were in, the nurses seemed glad that I was there so much to do their cares. If nobody has explained to you already then ask the nurses how to do kangaroo care. It's basically skin to skin where they tuck baby down your top and she can cuddle in there for as long as she wants. Ask any questions you want they would have heard it all before and no question is a stupid question. After all if you don't work in that environment then why would you know what all the wires are and why they're doing what they're doing? Ask to speak to the doctors after their round so they can tell you what the plan is for your baby and explain any extra help she might need.

It's potentially a good sign that you're rooming in with her. When mine were in, we only roomed in once they were close to discharge. It's unlikely that the staff will tell you how long your baby is likely to be in but what I found helpful was to ask what criteria they look for when they are deciding when a baby can be discharged so that I had an idea of when we were reaching those sort of targets. I made sure the nurses knew that I wanted to do things like bath so they made sure to wait until I was there.

Above all else please remember to look after yourself as well. Nobody expects you to be able to sit at the unit all day every day when you're recovering from birth. You know that your baby will be well cared for and that you will be doing as much as you can but you need to make sure you take time out to look after yourself. NOBODY will judge you. You can call the unit for an update if you're not there and you just want to know how she is. Even in the middle of the night. You are important too. If you need to cry, then cry. Don't try and hide what you're feeling, it won't do you any good and the nurses won't feel that you're not coping . They've seen it all before.

Thank you for your kind responses! Honestly cried reading them all, i just feel like im being bombarded with medial jargon i cant process it, i have a slight advantage with my mam being a nurse so she understands the lingo, but its still so overwhelming. I mean I only gave birth on monday... but i feel like im having to put on a show and be futher along than i feel i can manage? Its so hard to explain.

I feel so torn, i hate leaving my OH and i hate leaving my baby. But theres no way my Oh would sleep in the hospital, hes got such a phobia i was lucky to get him in delivery room.
He knows i need to be here, and so do i, and hes visiting when he can. But im scared being apart will drive a wedge between us. Its just so hard to explain. I know im being stupid and he loves us both but cant explain it.

Im going to ask them in the morning about a discharge plan. Or like a milestones thing. I mean shes 6lb 5 and i reckon its because im so adamant i want to breastfeed that it will hold us back. I mean she gets the general idea and knows what she needs to do and does it but for like 5 minutes and then falls asleep...

My son was born at 36+1 but needed a lot more help than I was prepared for. I had a 2yo at home, and he had jaundice etc too.
Basically- I cried all the time. And everyone at the hospital was so nice and they just said kind things and they were wonderful. I never felt judged for it. One day I cried so much and for so long I had to call DH in to the hospital to hold my hand as my blood pressure readings were crazy high and nothing else worked! I also remember the stress of breastfeeding and the medical jargon.. it’s not always easy to think of qs at the time and you can’t always speak to the relevant professionals when you want to! I was on the phone near midnight to my best friends husband (she was on the call too!) as he was a doctor in a neonatal unit, grilling him about breastfeeding and jaundice and crying through it because I’d asked people my qs during the day but they couldn’t get answers. I found people dismissive of the difficulties too- ‘oh they’re a good size!/He was practically term!’ Honestly it was soooo hard.
But it passed! Soon enough things got better and by the time we got home, I had a healthy wee baba who was just chilled out and wonderful, and an extra few precious weeks of those lovely newborn snuggles. Everything feels huge right now- it is definitely ok to cry!

Congratulations, shes a fantastic weight too! My son was born at 34 weeks and spent a week in scbu. I struggled to breast feed as like your baby, he would fall asleep very quickly and need topping up. Are you managing to express to feed her? Crying is normal, i cried soooo much after he was born even after he came home. As long as she spends the required amount of time under the light, you are usually encouraged to hold and perform all care duties. The nurses when my son was in encouraged me to do skin to skin as often as possible once he was mainly wire/tube free. I hope she's home soon

Big hugs. SCBU is frightening when it’s new to you. We had a baby in NICU (and then SCBU) so I’ve been through this

Firstly - with the jaundice - ask the nurse (or you should be able to talk to the consultant once a day) to see her bilirubin chart. This will visually show you the jaundice readings they are taking regularly, vs a treatment line. There are normally two or three treatments lines on the chart - normal/very mild jaundice that doesn’t need treating will have low levels on the chart below the first treatment line, and very high levels (requiring blood transfusions) will appear above the top treatment line on the chart. You will be able to see her progress once you understand the chart. Depending on how severe her jaundice is will depend on the treatment she gets (number of lights for example, and how long she needs to stay under the lights - my baby had such severe jaundice she couldn’t come out from under the lights at all at first, but gradually she was allowed out for longer each day. The nurses and consultant will be able to advise you on this.

Similarly for feeding - all her feeds (bottle/nasal tube/breast) will be being recorded. This is especially important in jaundice cases as fluid helps clear the jaundice more quickly. Talk to the consultant about the plan around feeding - what would they want to see to allow you all to go home once the jaundice had cleared. For us it was 48 hours clear of the nasal tube, continued weight gain and we needed to demonstrate breastfeeding and top ups were manageable for us to sustain the weight gain when we got home. Exclusive breastfeeding (at the start at least) is hard with prem babies - you don’t have all the time/access for lots of long feeds, plus the jaundice and prematurity will be making her tired and therefore too sleepy to feed. You could talk to the nurses about getting a hospital grade pump so you can express milk for them to use for top ups rather than formula - gradually you’ll be able to decrease the top ups and move towards exclusive breast feeding as she gets older/less sleepy/less jaundiced.

The other milestone you can work towards is managing all of your babies care that is non medical. So doing all the nappy changes and feeds (assuming they’re not nasal tube), etc. This again is something they’ll want to know you are managing at discharge. Nurses will be happy to point out what you can be doing.

They’ll have seen a lot of mums and dads crying (and not coping) and they won’t judge at all. Don’t worry about that. Remember to look after yourself too (postnatally you need to make sure you’re taking care of yourself anyway but also you’ll be going through the hormone crash which won’t help you feel stable emotionally) and ask the people around you to help as much as possible - make sure you’re eating and sleeping for example.

I have heard too that a lot of babies dont "get" the sucking sorted (for breastfeeding) until about 36 weeks gestation, so dont be too hard on yourself that your wee girl is still so sleepy. The sucking motions etc are still to be learned by your baby, so just keep on trying, & then it will all click into place.
My 1st premmie was born at 32 weeks & it was so hard to keep him awake long enough to feed him, & its also so tiring for new Mums to be trying to feed their baby, expressing in between times, & resting (plus the stresses & tears, everything is so overwhelming when its not quite what you expected). But, congratulations, you have a new wee baby & you will be home before you know it.

My milk has well and truly come in, if i expresss its well over 100ml that comes out i just feel so out of it, i cant stop crying and scared theyll keep her longer because of it but its because im here im not coping, i cant handle it all

Wow all that lovely milk!!
What a lucky baby!

Everyone cries a lot after having a baby
You had a baby less then a week ago you are exhausted from travelling and sleeping in a hospital (or trying to sleep) you are probably sore. You are going to cry. I promise it's not an indication of you coping.
Are you with your baby now xxxx

I was told the more time they spend under the light the quicker the jaundice will clear, so hard to not be able to pick them up though. You could ask if they have any billi blankets to use while you cuddle, these have the same light but the baby lies on them so you can hold both blanket and baby at the same time.

It might also be worth you contacting bliss to see if they have any volunteers in the unit who could come and talk to you. They have people who've some the nicu journey who come in to support mums. www.bliss.org.uk/parents/support

Thank you @brokenhead yeah im with her now, i just feel so frightened to do anything, im scared because shes under that light i cant pick her up at all. Ive got one of those uv blanket things to use but if it was up to me shed be attached to me 24/7 with that and not under that light.
Im so tempted to just stop trying to breastfeed and bottle feed. Im worried theyll keep us longer because im so adamant to establish that.
All im doing is crying, i feel awful and so detached from myself. I just dont know whats up from down and i cant see a light at the end of the tunnel

Oh my lovely. As well as everything you've been through you're probably going through the baby blues as well. Can you tell your mum how you're feeling? Will she be supportive?

But im scared being apart will drive a wedge between us. Its just so hard to explain. I know im being stupid and he loves us both but cant explain it.

Again although what you're feeling is real, I think this is anxiety talking - and no wonder you're anxious. Your reaction is completely normal to a traumatic event. Other people on the unit might appear to have it together better than you but I I would bet my last pound that every other parent in there has been where you are now. These situations will affect your relationship because just having a new baby does! Let alone all the other stuff. But it doesn't mean you have anything to worry about, if your oh is a good man he will appreciate that you need to be there with the baby. Does your oh have anyone he can call on for support aside from you?

It sounds like your baby is a great weight. Pp is right, I was told the suck reflex doesn't develop until 35-37 weeks so she won't be far off it. One day it'll just click and you'll be away. It might feel right now like you'll never get out but you will and eventually all this will be a distant memory.

Could you go and find a nurse now to ask about picking her up?

The reason I suggest asking now is when mine were in I would sit there looking at them for the first couple of days and desperately wanting to get them out but didn't know if I was allowed or how to handle them with all their wires. I didn't want to bother the nurses but then one of them said you can get them out if you want to and she showed me how to handle them so I didn't need to ask the nurses from then on.

If you ask someone and they say that the baby needs to be under the light for x amount of time per day then you can plan your day so maybe leave the baby under the light while you go and get some lunch and express if that's what you're doing and then when you come back, cuddle her again. Don't forget she's your baby (although I certainly remember not feeling that in the early days, after a week or two I started to adjust, found my feet and got more confident with dealing with the nurses and doctors) don't be afraid to ask about her care.

Bottle feeding might get her out of there quicker but if you really want to breastfeed then it's worth sticking with because it will be more difficult to restart the breast milk when you get home. You may only be talking about a difference of a few days for discharge if you bottle or breastfeed or maybe no difference at all. So if you really want to breastfeed then follow your instinct it sounds as though to me although I'm not an expert that she is doing well for her age with even trying to latch.

Hugs. It does sound like the baby blues have kicked in, totally normal. Do you have the midwife seeing you for postnatal care? Worth asking for a chat and letting her know how you're feeling, she is there for your care.

Agree with others on the suck reflex, she's a wee bit early but it will come. Just keep offering the breast at every feed you can, and express the rest to keep your supply up.

She sounds a good weight, and she'll be getting stronger with each day.

You're doing great xx

Hi @captainshortie my pfb was also born early with breathing problems re the lamp pick your LO up as and when you feel they need it - try to be mindful of the time under the lamp I used to pick pfb up twice an hour for 5 mins (aside from feeding) I reasoned the longer he was under it the sooner he could come out. Ask as many questions as you need to it's a scary time and you need to know what's going on. Sending you lots of love and positive healthy vibes for a speedy homecoming for your pfb xx

Don't be "brave" be honest and real with those around friends and professionals alike

DS1 came along at 34 weeks and he spent 3weeks in Scbu. He was only 4lb5 and was only really in that long because he was small, and kept falling asleep during feeds, and he needed to be able to regulate temperature - no medical intervention needed. He was also under the lamp for a bit, but while he was in his incubator we were allowed to stroke his head, and he really liked me resting my hand in him bottom! So although we couldn’t hold him for long at first, we still had lots of contact so if you’re unsure just check with the nursing staff. Honestly, they won’t be judging or thinking you can’t cope. It’s all a shock to the system thinking you’ve got so many weeks to go then suddenly the baby’s here! I’m a HCP, and work in the hospital I gave birth in and I still probably asked loads of stupid questions but the staff didnt bat an eyelid.

When it was time for him to come home I stayed in over the weekend as I was ebf, and they just put us on post natal ward, let me get on with feeding him and on the Monday weighed him, and discharged him as he’d gained weight over the weekend. Because he kept falling asleep during feeds in the early days the nurse suggested tickling him under the chin to wake him gently and encourage more feeding. He did progress to feeding for longer, and taking more milk as he got that bit bigger and stronger, so it will come just keep going.

If it’s any help, DS is now 7, and full of beans. He’s healthy, happy, doing great at school and you’d never know he was such a tiny premie. You’re doing better than you know right now

@captainshortie, how are you this afternoon? Keep crying as much as you need to and keep talking. You’re doing a fantastic job.
This might be stupid and not work for you, but when I get into these hormonal crying funks now I quite often purposefully watch something that will make me cry ‘happy’ tears. Like DIY SOS, or similar American shows where you have a family that really needs help and a community rallies round to do it. I find that it kind of redirects my crying, and I reach a point where I feel more in control of my tears and I can face my ‘next’ task. Please ignore if this is useless to you- its just something I do when I feel I can’t control my emotions! It’s definitely baby blues time and honestly I’m not kidding when I say I really bawled my eyes out in there. I felt awful because there were lots of babies younger and weaker than mine, but it’s as much about birth and hormones as it is about the reality around you.
Also been there with the jaundice lights/worry about picking up and bonding issues. I was discharged before DS and I remember waking up the next morning and bawling because I didn’t ‘feel’ like I had a baby. But as time went on and I grew more confident lifting/feeding and I became more responsible for him the bond started to develop and grow, and honestly we had and have the most powerful bond now. It’s so ok to be overwhelmed right now- the good news is that this is not your forever and things are going to get better and better. Hugs to you.

With the jaundice you need to ask. Mine was in for a week for it. She cannot be removed from under the light. All feeding was via tube. I was given access to a breast pump room and a fridge to store breast milk. Do not remove her for cuddles unless you are told it’s ok.

Thank you so much for all your kind words, honestly its brought me so much comfort reading them.
My OH was here for an hour this afternoon and we took a walk to get me some magazines and had a cuddle and honestly think it was just what I needed, i really feel so much better.
My mam came for visiting again tonight and said she can already see a huge difference from last night in how baby is acting. So i know me being here is a good thing. Ive decided to go home tomorrow afternoon for a good few hours and come back up for visiting hours and to spend the night. As much as I know I need to be here i feel so detached from the outside world i know being home for a few hours will do me the world of good. And means I can come back refreshed and ready for another night.
One of the nurses told me this morning 'its not a prision, you can come and go as you please, we are here to look after her aswell' which made me feel better.

I also feel better in the fact theres 2 other (sicker) babies on the unit who have had NO visitors since i got here at 1pm yesterday afternoon... and ive had my OH, my grandma, my mam and dad. I know it shouldnt bother me, but i get worried that im being watched with the amount of visits im getting, like "what kind of dad has this baby got hes only been here 3 times"
I mean obviously i dont know the other circumstances, but i mean these babies have had NO visitors, not even mam or dad!
I dont mean it to come across in the wrong way, im not very good at explaining myself... but you know what i mean?

It sounds like today had some good times for you - delighted to hear it. It’s so lovely to hear of the effect some time with a supportive OH and mum, and of some more visitors for your little one. Sounds like a good plan re: getting some home life and normality tomorrow and refresh for coming back in. Keep on keeping on- you’re figuring it out just great.

How long ago were the babies born? Paternity leave is only two weeks, and their mums have to look after the older children once paternity leave is finished.

You are very lucky to be supported by your family. Many don’t have anyone nearby. It’s very difficult when you have more than one child.

Take care and be thankful you have all the support you got.