Preparing for premature baby

[theotherfossilsister]

I was in the August group but it's looking scarily likely that baby boy will be born late June or early July although he was due end of August.

I have been closely monitored for anti ro and low papp-a and he has just slipped hugely down the centile charts from thirteenth to fifth in a fortnight. I'm twenty nine weeks two days. They are going to do lots of monitoring but they warned us that thirty two or thirty three weeks is likely. Possibly by c section as they want to save him the stress of labour.

My partner and I have been invited to meet the neonatologist and ask any questions. I also have to go in with even the smallest reduced movements

I don't know what to think or do.

I had some really helpful replies on Facebook but no one with exact experience I've got.

Also I have anxiety disorder and autism and find it difficult to tell the difference between real fears and anxiety disorder ones.

I'm so worried about my son.

I'm hoping by some miracle I can keep him in and safe and alive as long as possible but my body isn't giving him everything he needs. He's measuring 27w5

Every day your baby is in you he is maturing and you are protecting him. When you go to bed at night you are a day closer to holding your beautiful boy. Take care of yourself because by taking care of yourself you are taking care of him. No helpful medical knowledge or experience to impart but thinking of you and the life you are creating.

I remember this stress OP, DD was born at 29 weeks but not for the same reasons as
yours. I was given a drip before the C-section to help prevent bleeds on babies brain, I think it was magnesium sulphate? Maybe ask if you’ll be able to have that. Once the baby is born ask for help expressing milk (if that’s your choice obviously) as soon as you can as they called it liquid gold when DD was in NICU, even before she was able to have milk they used it cleaning her mouth.

I don’t have much helpful advice im afraid, it’s a scary time, but you’ve made it to a good gestation and every extra day is a bonus, we spent 46 days in hospital, and she was small for a while, but hit every single milestone eventually, you would never no what she went though now. Hopefully baby holds on in there a while longer and you have a smooth ride. NICU staff are truly amazing and so great at what they do, you are in safe hands 💐

Thank you @viques that's a lovely message

That sounds very scary OP. But the good news is you and the dr are aware and therefore monitoring closely so will hopefully pick up any problems quickly. And they will be prepared at the birth with all the right drs and equipment.
If it was me I would be asking to go and see the NICU so you can prepare yourself for what it looks like and what you might need/want.
No experience of prematurity myself but I was several weeks early and also a twin so very small- I lived in clothes knitted by my gran which saved money on tiny baby clothes- so if you know anyone who knits get them going!
The relevant experience I do have is a c-section 4m ago and I have to say I was pleasantly surprised by the recovery- so much easier than I expected. I have several friends who went through labour then had to have an emergency c-section and their recover seems so much harder as they are recovering from both and also weren't prepared for the c-section. Mine did turn into a serious emergency c-section in the end but I had planned a c-section so was prepared for it and my body only had to recover from that not labour as well, plus I wasn't exhausted from labour.

Thank you
@BattenburgDonkey that sounds like a hard journey but so glad about the magnesium. I will definitely ask for that. I'd also love to be able to give him breast milk if possible

Thank you @Cuwins . I'm glad they know, you're right. It's far far better than not knowing I think. I'm so glad your c section went well

I was born at 32 weeks by emcs weighing 2lb 15oz’s in 1992. I spent a while in the NICU before I was allowed home. I’m guessing the technology is probably a lot more advanced now than 30 years ago! Wishing you all the best xx

I had my DC at exactly 31 weeks a few years ago by emcs. The reason being no amniotic fluid and infection as well as the placenta failing. DC spent 5 weeks in a neonatal unit. Seems like a bit of a blur now but they gave me steroids for the baby's lungs which helped. I hope you hang on in there and your dear son improves. You will get through this, wishing you the best x

@theotherfossilsister I'm so sorry you're going through this with your precious boy. My DS was born at 30 weeks two years ago. Like a PP I was given steroids for his lungs and Magnesium for his brain. In my view, both were invaluable. The doctors should already be lining these up for you but in case not, do push for them.

One thing I found very helpful was counselling from the NICU staff pre delivery. They sat down with me, explained all the processes, expectations and answered any questions I had honestly and fully. As the doctors dealing with tiny poorly babies day in, day out I found thier experiences and knowledge so reassuring. It's something I'd definitely recommend you asking for.

We spent 2 weeks in NICU followed by 6 weeks in SCBU. Aside from being smaller than his peers, you'd never know now he was a preemie. It's a tough journey though and my advice is be prepared for constant ups and downs.

Sending all the positive vibes your way x

Thank you so much for all.your positive stories. It must have been such a stressful time @Beth262 and @MadamMaltesers

I think I'm braced for ups and downs but I stupidly keep fixating on the worst case scenario almost like doing so will protect me from it, which is a ridiculous way to think

I need some really excellent questions to ask the neonatal doctors

@theotherfossilsister Thank you.

I'm anticipated early labour with my current pregnancy and had counselling from NICU again just last week. The list of items they cover off is in my pregnancy notes. I'll take a photo of it and DM it to you as a starting point for your questions if you like?

@Beth262 thank you,that would be really incredible.

Sorry @theotherfossilsister, seems I can't do an attachment in a PM so have cropped to show the salient points for you below. I really hope they give you a good starting base for your questions and if there's anything on there you want to clarify, just drop me a PM. Good luck and everything crossed for you x

Hi Op, my placenta was failing and I also had pre-eclampsia, DD was born 3lb 8oz.

I had steroid injections before my planned c-section. The C-section was ectually a really nice experience, the team was amazing, recovery quick.

The Nicu team are the best baby sitters you will ever have. The technology is amazing, for the babies being in the incubator is the same as being in the tummy.

It can be scary and overwhelming at the beginning. Please reach out to the perinatal team if you are struggling.

You will spend lots of time in the hospital make sure you eat well and somebody helps you with the cooking/household.

I'm sending my love to you. Everything will be ok. X

@theotherfossilsister sending you a big hand hold. my DD was born at 34.5 weeks, but we started experiencing labour at 31 weeks. Echoing others here that every day your baby stays in is a blessing. Hydrate, rest, get the steroid jab for the baby, and I really hope you’re all ok. When that early, the NICU is the safest spot for them. The nurses are just phenomenal. So knowledgeable, helpful and caring. The doctors are in and out, they talked to us, but the majority of our communication came from the nurses. What we were told (too late) was that the first 24 hours are usually the honeymoon period. We had our baby, we were holding her, we tried feeding her, all seemed good. We went to bed, came back down to visit and she had rapidly declined and had a collapsed lung and every tube possible was in. It was terrifying to be frank and we were completely unprepared. So worst case scenario, prepare yourself for initial relief, and the possibility that things after 24 hours get tougher before being better. Some others have the polar opposite experience, where it’s a straight uphill and out of there, and I hope you’re the second bucket. It’s a roller coaster place where you will experience every emotion, and god you’ll get used to the monitors and beeps, and you’ll wish you had them at home just to “know” your little one is ok when out. Our NICU wouldn’t usually send them home until 3 weeks before due date (general rule) so it was a long process of 3x daily visits, traveling, pumping at home as that was all I could do and is the one real thing to help your child. I ended up feeling generally like a half parent, and helpless. It’s hard when you see other babies come in and go home 24 hours later, and yours isn’t. But, we saw all kinds of admissions when walking in (very large babies, seizures etc) the NICU doesn’t just take premies. Ultimately our DD was “healthy” and cared for, and that was what mattered. We just had to be grateful if that. There was a therapist on site who helped monitor our baby’s oxygen, but also took time to teach us to feed and burp, clean and do everything for our baby. He was an actual superstar. Over the weeks he taught us so many parenting tricks and ultimately was the highlight of our visit, I will always be grateful to him for always going the extra mile. Sending all the love and hopes for a safe journey for you both x

And also just to reiterate what another poster here said, you would never know our DD was a NICU baby. She is a fighter who is so incredibly independent and strong willed. Her doctor said they usually all catch up by 12-18 months developmentally, but by 6 months we were there. She walked, talked and has generally developed ahead of her birth date age group. The only thing she did slow was get teeth. Modern medicine really is a miracle, and that team in particular is incredible

I was you a few years ago, even down to the dates. My daughter was due at the end of August but arrived six weeks early.

A possible issue was flagged at my 20 weeks scan that meant I had an additional scan at 28 weeks. From being normal size at 20 weeks she had pretty much dropped off the chart by 28. I then had near daily scans while they made the 'better out than in?' decision. We limped along to 33 weeks and they decided she should come out as soon as a nicu cot was available. I had a section as the consultant didn't think she would make it through a natural birth. She was 3lb6 and spent 3 weeks in nicu/scbu.

She didn't need much to begin with as they don't wear clothes in nicu. She was just in a nappy and a hat. We got some tiny baby outfits for when she moved to scbu. Her biggest issue was feeding. She was weak and would take 40 minutes to drink 10mls. I spent a lot of time in the expressing room - the hospital provided everything needed for that. Frustratingly she picked up two infections in hospital, which delayed her exit 😡😡😡

I won't deny I found it all a horribly stressful experience. Nicu is a bizarre experience. My head knew I had a baby but she didn't feel like mine until we walked through our front door at home.

Take care of yourself. The best present anyone got my was a huge basket of cakes and muffins. My body was making gold top to build her up and I needed the calories. Drink lots too - breastfeeding and the dry environment really takes it out of you. And make sure you get some rest - you will need to recover from the birth.

I just wanted to add that I suffer with anxiety and autism too and totally appreciate how much harder this can make things to deal with, it’s a lot to process. Never doubt your fears, this it a totally normal thing to be worried about. Make sure you surround yourself with as much support as you can, most counties have excellent free telephone counselling services available if you feel that would help you cope? Wishing you and your baby boy the very best of luck, look after yourself

Thank you everyone. So much lovely stuff on this thread which counters a lot of the scary stuff I've seen. Just waiting to see the midwife. I think obstetrics were updating her but I've got all the notes from the other day and a photo of the computer screen with my babies measurements

I'm really confused as to whether to go off sick. I'm a librarian and don't know how well I will cope public facing but at the same time work is a good distraction and I'm only 29 w 4 days

I was born 3 months early, in 1985.

I'm perfectly well and healthy. I'm sure the technology back then isn't a patch on what they have today. I also know your LO will be in the very best hands.

Ask about holding him. I can't remember exactly the name of it, but babies who are held more have better outcomes and stay more stable iirc. And it'll help you to bond.

I think at a certain point they can trigger your maternity leave rather than sick pay, so watch out for that one OP, one think I will say is that maternity leave is just not long enough with a premature baby. Personally I preferred the distraction of work, but it’s whatever makes you most comfortable. Hopefully they don’t keep you waiting too long today.

Also @theotherfossilsister Ive reported your image as I think it has your name in it (sorry if it’s not), just incase you want to remain anonymous and haven’t realised.

I'm really stupid today, sorry