My baby was born at 33+5 and I struggle to sit in NICU everyday

[mrshannahr2]

My waters broke bang on 33 weeks and they managed to keep her in until 33+5 before she had difficulties and an urgent medical intervention was needed - I ended up having such an emergency section that they put me to sleep for it as they didn’t have time to wait for a spinal to work! I seem to be recovering quickly which is great as I had a c section 4 years ago and had a womb infection so was in hospital for 2 weeks after having baby that time. This time I got discharged on day 5 so was super happy... I’m just struggling now as I just sit in NICU and look at my poor poorly baby day in and day out. Looking at her notes every day and the “current problems” list just seems to get longer 😔 she was small for GA when I was pregnant so she was 2-3 weeks behind in growth so was born weighing 2lbs 12oz... I feel like she’s going to be in NICU for months and I’m already struggling on day 8....

I'm so sorry MrsH, I've been there and it's one of the hardest places in Earth.

From one NICU mum to another, stop reading the notes. Be there for ward round if you can and get the nurses / docs to explain everything but seeing it in black and white with words you possibly don't understand (yet! You will do) is just too hard.

What do you do during the hours you sit there? We read incessantly. Lots of kids books - he'd done Wind in the Willows, Peter Rabbit etc all before he left. Sometimes women's magazines if that's what I needed. Made up stories. Songs. Anything really.

Can you help with her cares yet? Once I could do even little bits it helped make him feel more mine.

Hand on tummy and hand on head makes them feel like they're being held.

If your supply comes in and you want to, pump and get the hospital to freeze it for when she can take milk

I don't know how poorly she is or what issues she has at the moment so it's hard to say anything else except you can do this, you can because love will push our scared bodies through the most awful of times.

If you're in FB look for a preemie website, it will give you some additional support too

So sorry to hear of the traumatic start you’ve had to your LO’s life @Mrshannahr2

MN has a Premature Birth Section if you fancy talking to some other MNers, although Sleeping seems to have given you some good advice already

Has anyone told you about Birth Trauma UK and the support they can offer you?

Aww OP I was a premmie - born at 29 weeks. I was two pound 10 ounces. My mum sat in NICU for six weeks. It was hell for her.

I'm a ridiculously healthy adult now, never ill, straight A student, great career and two healthy kids of my own.

This is but a short phase in both your lives. It will be over before you know it.

Firstly, congratulations. Secondly, you don't have to be there all the time. Your dd is in safe hands. Look after yourself.

I was a preemie babe born at 30 weeks weighing 2lb10oz I was told i would have alot of things medically wrong with me and learning difficulties. I have not one thing wrong with me although i do have very small ears

Also my best friend we were due the same time had her baby at 31weeks as her baby like yours was behind growth wise and she like you again had to have an emergency section under GA. Now her baby is a happy healthy 1 year old whos bigger than mine she was discharged not far from her due date weighing 4lb.

Hi all, thanks for lovely messages. Little one is doing okay she’s putting on weight and taking feeds like a dream. We have had her genetics blood test results back today and found out she has a syndrome called Wolf-Hirschhorn syndrome. Trying to take everything in and we won’t know a lot until she’s bigger. Just wish she was a normal healthy baby. There’s nothing I wanted more than a girl to be a sister for my big boy (4yo) and now I feel my world has been torn apart.

My dd ended up in NICU suddenly despite being full term and natural birth, it was a freak set of circumstances that landed us there.

Firstly you are doing a great job, please believe that.

Secondly, my consultant told us that when they start to find more things wrong it can be a good thing. Your child may have had this issue from the start, they just understand what is happening now and are closer to solving and treating the whole problem. That thought helped me when more and more was being listed each day.

Lastly, make sure you sleep, eat and find a way to calm your mind. I sat watching old episodes of Gilmore girls on an iPad for hours. I bought microwave meals for the parents room so I could eat to keep my milk going.
I wrote things down, my thoughts, questions and just ramblings. That book has been a real treasure to me in a really odd way. It is my first days as a mother and shows just how strong we can be.

You are amazing right now. Please take time to believe that.

My daughter as born at 29 weeks and spent 4 weeks in NICU. I know is hard but it will get better! Over the next few weeks the list of problem will get smaller and before you know it your baby will be home with you. Try and do as much skin to skin as you can, I use to bring my iPad and watch movies next to her or read her books. Does the hospital have private parents rooms for you to stay? I found that was very helpful so I could feel close and eventually they let the baby sleep in with you

Good luck x

Like widget says, I think it’s goid that you have a diagnosis so early. They’ll be able to keep an eye on her and hopefully by the time you leave hospital, you’ll have some support for her in place?

I’ve not heard of the syndrome before and I’m guessing it’s pretty rare. Did they give you details of any support groups?

I live a 20 minute walk from the unit so it’s no trouble for me to go back and forth. I’ve been spending less time there as I really am struggling. Even more so now I think. The syndrome is really rare it’s one in 50,000.... just happens to be my one this time

I don’t think anyone would judge you for taking some time for yourself. She is being well cared for and you have a lot to think about, plus recover from the birth and look after your DS

It's crap MrsH, utterly utterly shit and unfair. There's no cherry coating it because anything that makes our babies lives harder is ducking unfair.

She is a sister for him, and they will find their own relationship, their own bond. It isn't what you expected, it isn't what you dreamt - and it's ok to grieve for that. It's ok to sob or scream or whatever you need to do to grieve for the daughter you expected, the life you expected. I'd say it's even healthy to grieve for that because you need to ackowledge that the future looks different but tht doesn't mean it won't still have its own beauty, it's own abundance of love and laughter and happiness.

I'd recommend registering with www.rarechromo.org/ - they can send you info and also help you connect with other families whose kids have the same. Facebook probably has a special group too. Talk to real families, see real kids - not just the worse case scenario the medics are good at.

Be wary of what you read online. The NHS webite says kids with my sons condition occasionally make it to early adulthood. He's 3 and he has nothing that is life threatening any more. They do not know our kids, or what the future holds. None of us do so we have to fight through every day with love and hope xx

The NICU is a very hard place to be my love, my son was in for a little while (although not a preemie) and it sort of sapped the life from me and I just could hardly bear it. You’ve been given some great advice above, I just wanted to add that IME Ward rounds and shift change were brilliant times to get info. I left for 2 hours for a walk, a coffee, a shower, whatever every day while they did their tests and procedures because it upset me so much. That’s fine. You need to look after yourself as well so do what works for you and don’t worry about anyone else. Talk to other mums in there, I’ve made a lifelong friend of the mum whose little boy was next to mine. We cried on each other in the milk room and kept each other going just softly talking. Read books, watch films, tune out the alarms. As a PP said whatever you can do to get involved helps immeasurably so nappy changes etc. Kangaroo care is wonderful, I think the first time I snuggled him against my skin, so carefully avoiding the wires and hardly daring to breathe, was the first time I felt like a mummy. You can do this. Look after yourself darling we’re all here

I can't imagine what you must be going through.
Sending love and best wishes to you all.

There are some groups that support families with this syndrome rarediseases.info.nih.gov/diseases/7896/wolf-hirschhorn-syndromehere
Phoning someone who has some experience of what you're going through can be helpful.

You are very lucky to have your baby. So what she's got a few issues. She's alive and will thrive. She needs her mum to be positive and thankful that she's here. The staff in the NICU unit are great and will encourage you to do all you can for her. Focus on the positives and you'll see all will pan out.

Be kind to yourself as well as your little girl.

Hold her as much as you can as she'll love it and very importantly it will have a soothing effect on you too.

My son was born at 33 weeks , he was very poorly , aspirated and had to have a long line due to reflux . We brought him home after 4 weeks . Lots of babies went home before him.
It's hideous time but I don't think about it at all now except to be Grateful to the nurses .

Dd was born at 32 weeks. I had pre-eclampsia and she came out small at 2lb 4ozs. She was in NIcu until 39 weeks. Because the ward had given me a drug that increased bleeding should I need surgery, (a side effect of it trying to help her lungs) I had to have GA. I didn’t see my bub for hours after. I hated sitting in nicu all day. I hated the bf nurse (I believe there is no point forcing a body in shock to do something it plainly doesn’t want to do) I hated the pumping which barely produced anything. I hated the fact it took me weeks to feel better. I hated it all and I decided not to have any more kids. Dd had eye problems and the doctors said she might not meet her milestones but she has beaten all expectations. She’s 12 in two weeks time, as tall as me, strong, clever, funny, kind and her eyes are fine, and she exceeded her academic expectations at Primary school, and physically is normal. She’s had nothing but eczema and was very colicky as an infant but nothing long-term.

I had a terrible experience dealing with nicu and the maternity ward and I found babyhood hard, but it got better, and I am glad we all got through it. Whatever you are feeling now, just find someone to talk about it, and it will get better. When I took dd to a cafe as a bub, an old lady said, She’s small! I replied, She was born 8 weeks too soon. The woman said, my boy was born at 28 weeks fifty odd years ago, and they gave him no chance. He went on to be a rugby player, have a family and has had no problems at all. Don’t believe everything those doctors tell you! I found it a comfort. I send you all the hope and love in the world.

as PP have said be kind to yourself. My DD1 was in SCBU high dependency and I found it very difficult and emotional and hardly produced milk. Your baby is in the best place and your doing your best and that's all you can do.

Also as PP have said wait and talk to the doctors on their rounds

@mrshannahr2 .... I didn't mention it in my post because it wasn't relevant but having read your update I will now .
My son has a rare chromosome multiplication too. We weren't told in scbu , it came up later on but I knew something wasn't quite right . We were given a pretty grim prognosis and I'm not going to lie it's been hard but he is now 7 and loves life . There are things he can't do but he gives most things a try . I always tell him he can do it and have a very upbeat attitude to everything he does .
It's not the life I wanted or expected but it's the one I've got so I try to make the best of it .. pm me if you would like to x