Never thought I'd be posting in here

[dizz]

I don't even think I've still mentally fully processed it all to be honest. Basically my lil girl was born at 33+6 weeks gestation last week - and we're still in hospital now (and NOT in one with a good setup regarding these dinky little dots to be honest - I'm essentially a live-in resident on a normal maternity ward - which would drive anyone bonkers).

Easter Sunday I had periody type pains, gradually realised they were on a 5 minute cycle so rang for advice and was told to go in for monitoring. Monitoring and an exam found amniotic fluid - so I got the first steroid injection and they called a doctor down from the neo-natal unit to talk to me about how 33/34 weekers were likely to be - I still don't think I processed what was going on by then. Wouldn't examine me anymore because of the infection risk with membranes being ruptured - and kept me in waiting for the next steroid injection.

Never got that far - waters fully broke and I was in established labour Monday evening - when they broke and they resumed examining me - I was 8cm dilated (because of hospital incompetence I'd done that on 2 paracetamol only)... and after a horrific delivery - my little girl was born that evening. Things were handled awfully by the hospital during my labour - my wishes were ignored and I was so bullied I ended up in a right over emotional state - a state that worried staff so much the neo-natal unit referred me to social services - I spent the first 2 days of my little girl's life fighting to prove my capability as a parent - until they concluded there was nothing to investigate there at all.

Circumstances since then have made the hospital stay incredibly distressing. I'm on a normal maternity ward, with the transition children mixed in - so we get to see parents come up with term babies and leave the same day... and we get endless "omg that baby's tiny" comments... and on the first few nights when she was in ICU - I had to lie in bed alone listening to newborns scream - which was hell.

So basically here we are - we've seen off the jaundice hopefully, we're starting to gain weight but still being half-half tube and bottle fed. My nerves are utterly shredded (living behind a curtain is taking its toll) and I'm essentially a walking shadow of who I should be, and the trust in the hospital has vanished utterly because of the social services crap they pulled earlier. Food's inedible so we're paying out a fortune for baguettes from the cafe (and then they complain I'm slightly anaemic - if the food contained any nutrition, or indeed any molecular structure I blooming wouldn't be), and there's no provision for a break away from the ward with adequate care for the little one - no one is even looking like being available to oversee one sodding tube feed tomorrow so MIL can sit with her for a couple of hours and I can get a bit of a sanity break at home.

It's hellish-going... and I'm terrified of the logistics when she does come home. I was going to breastfeed, switched to bottle feeding expressed milk in order to get her going and us home sooner (I think she needs to be at home with mum and dad rather than in here with mum going slowly bonkers more than any boob-related politics)... but of course now she only knows the hospital teats and stuff - and they can't offer any guidance about how to proceed with this and preparing for this on discharge - so I'm scared of going home and her not feeding... I'm scared of sterilising everything at home and probably killing her with germs... I want to try to move back to feeding from the boob given time (no wonder I didn't succeed - I was given no support other than a couple of random staff launching my jugs in the vague direction of her mouth) - so I need to pump to maintain supply (and she seems to drink more expressed milk than when it's formula topped up) - so need to send hubby to get a decent pump rather than the little hand one we'd bought as a standby anticipating the odd one-off occasion where we'd need it... I'm on meds to up my supply since the stress, malnutrition and mistreatment made it hit rock bottom at one point.

Guess I'm just venting now but there's probably some questions in there.

I'm also scared of random batty old ladies in Tesco telling me off for being out and about with such a tiny baby - but am I meant to hide away indoors for the next 5-6 weeks till she'd be term?

 

[toothfairyx]

Hi, what a nightmare for you but congratulations on your baby girl.
Haven't much time to reply but didn't want to rnr.
Will be back later

PS don't take this the wrong way as none of this is actually funny but you sound like you have kept your sense of humour which is to be commended.

 

[25weeker]

Congratulations on your little girl.

It is hard being in a normal ward after a prem but hopefully you won't be there much longer. Your lo sounds like she is doing really well. My lo was 5lb when we brought her home and while we got loads of oh she is tiny none of it was meant negatively and the reality was she was tiny. Loved to have seen their faces if I had told them she was 4 months old lol.

Go out and hold your head high at your wee fighter

Good luck xx

 

[Lully2011]

Hey dizz, dont be so hard on yourself your doing great.

My twins was born 33 +1, unfortunately one didnt survive, but we were aware of this when I was 19weeks preg. My other daughter was in Neo Unit for 2 weeks, she was 4lbs 4oz when we brought her home, we were a nervous wreck for the first few days with all the noises she made, we were like zombies.

I was in hospital for 4 weeks before I had my twins, I thought I was going insane. Is there any chance you can go home with partner and go visit LO every day? I'm sure this will help you feel 'sane' again, noone would blame you for wanting to go home.

Could you maybe try a little breast feeding in the hospital? I pumped while LO was in the unit but when she came home I breast fed and bottle fed (breast milk), By 4 weeks I dried up and I swapped to FF.

Can you suggest to Neo unit to bring the bottles you have at home and try and feed her a few times? This will give you a good idea if she will take to them at home. If this doesnt work maybe you could try and get the same teats the hospital is using, this is what we done, cost a fortune but at least it was one worry we had ticked off.

You will be fine when you take her home, just take each day as it comes. Keep the house nice and cosy.

We didnt take LO out until her first hosp app which was 2 weeks after home time and even at that she puked in the car as I was driving Lol I pulled over on the motorway I'm sure I could have been arrested as I was a hazard but I didnt care, but she was fine, they always are, once they have warmth and love what more do they need

 

[Srrme]

Hello. Congratulations on the birth of your daughter. I am terribly sorry you have had such a rough time at the hospital. I couldn't imagine.

My oldest was born at 28 weeks and 6 days, after 3 days of being in the hospital, and a failed attempt to stop my contractions. He spent 11 long weeks in the NICU. He was on CPAP, low flow oxygen, IV, a feeding tube, and all that good stuff during his stay. I hand expressed breast milk during his entire NICU stay, and he was bottle fed that. Once he was discharged, I began exclusively breastfeeding him with NO problems. He is now 17 months, and still breastfeeding happily.

My youngest was born at 35 weeks. I began having contractions, and he was delivered by cesarean section 5 hours later. He too was on CPAP, low flow oxygen, IV, and a feeding tube (but not nearly as long as Elias) and spent 3 weeks in the NICU. I hand expressed milk for him too, and like his brother, he was bottle fed it. Once he was discharged, I breastfed him, and he is still going strong at 4 months.

They've never had bottles since their NICU stay.

When Elias came home, we were wary about taking him grocery shopping, and out and about with large crowds (mind you it was in the Winter, and RSV was going around). Fenix was an older preemie, so we took him out almost immediately once he came home. NO one was allowed to tough either one of them, unless they washed and sanitized their hands. And NO one was allowed around them if they were previously sick, or sick at the time. We were very cautious with both of them.

Being in the NICU doesn't last forever, and this will all be in the past sooner than you think. It's a long and tough journey while our babies are in the NICU, but they DO come home, and it DOES get better.

 

[dizz]

Had another try on the breast last night - she latches on like a champ, but still loses the latch very very quickly... I guess that's possibly still just a maturity issue and something I'm determined to work on when we can be snuggled up on the sofa together as she becomes more and more alert during her awake times.

She did, however, and this made me sob utterly - take a full bottle of her allocated milk twice during the night, and almost a full bottle another time... makes me think the doctor I thought was bonkers talking about removing her feeding tube on Friday may well have been somewhat less bonkers now!

Hubby's bringing our bottles in from home (god knows what he'll actually show up with!) to try to transition her over to those as a next step - otherwise it'll be a crisis shop around for nuk bottles since they're the teats she's been using.

All-in-all, it's been one of the less dark nights here - added by not having insane screamers arriving in the middle of the night as well.

 

[Honeybear1976]

So glad you had a better night. I had one at 31+3 and my youngest was born at 34+3 so have been where you are. Persevere with putting her to the breast in between feeds while you are in hospital, I think you will probably not to need to use bottles at home unless you want to go out without baby. I would get an electric pump, mine is a medella and is very good. I have had horrible care in my hospital and always just did what was necessary to get out and then everything falls into place when you are home. How heavy was she born?

 

[Lully2011]

Had another try on the breast last night - she latches on like a champ, but still loses the latch very very quickly... I guess that's possibly still just a maturity issue and something I'm determined to work on when we can be snuggled up on the sofa together as she becomes more and more alert during her awake times.

She did, however, and this made me sob utterly - take a full bottle of her allocated milk twice during the night, and almost a full bottle another time... makes me think the doctor I thought was bonkers talking about removing her feeding tube on Friday may well have been somewhat less bonkers now!

Hubby's bringing our bottles in from home (god knows what he'll actually show up with!) to try to transition her over to those as a next step - otherwise it'll be a crisis shop around for nuk bottles since they're the teats she's been using.

All-in-all, it's been one of the less dark nights here - added by not having insane screamers arriving in the middle of the night as well.

This sounds great, it sounds like she's coming along very well. Gooc luck with the bottle transition!! happydance:

 

[Sam182]

Wow. Your story is just horrifying. I'm so sorry you had to have such s traumatic experience. It sound like your LO is doing really well despite the lack of a special care unit (which I find completely shocking!) It sounds like she'll be home in no time. My little man was born at 27+3 and we came home after 86 days when he was 2.5kg. We waited a week or so before we took him out and wrapped him up really well! We got comments about how tiny he is but none were negative. Alex is also on oxygen which causes a few stares! Wishing you all the best x

 

[kazzzzy]

Sorry to hear that you're having a hard time in hospital, hope your daughter continues to do well, its very tough going in NICU, my 27-weeker DD was in NICU & SCBU for 11 weeks, I was like a zombie for a lot of it, between worry, lack of sleep, travelling over 2 hrs a day to see her etc etc!! But it does go quickly & before you know it you will have your precious daughter home, take care of yourself x

 

[SabrinaKat]

You can get NUK stuff at better stocked chemists (it sounds like you are in the UK); my LO was introduced (and refused others) to NUK during his NICU stay and we found some at a well-stocked chemist -- he's 11wks yesterday and still ONLY uses NUK (we changed to no. 2 teat, tho), so hopefully, one worry done. There is also a nukbabyshop.co.uk website where you can order bottles and teats, so if your OH doesn't have time (just double-checked the address); my local chemist has just ordered some more bottles for us.

I've read your posts elsewhere, and I am so sorry that you are having a hard time; many of the mums in this forum have had difficulties as well (I had pre-eclampsia, but fortunately, LO was fine (in NICU for 13 long days with some incompetent staff, but 90% good)), so we DO understand a bit....

Please take care of yourself and please let us know how you get on!

(and before you know it, YOU and LO will be at home!)

best wishes

 

[Sam182]

With regards to the teats, we were given some by the hospital when we left and they said they could be sterilised a few times whilst we tried others x

 

[dizz]

If she gains weight or holds her weight stable at weigh-in tomorrow - they're going to let us come home... terrified! She's so small and fragile - and the world's so big - going to be too scared to go out of the house with her!

 

[Honeybear1976]

Thats fabulous news, so pleased for you. You will be just fine. How heavy is she now?

 

[dizz]

waiting for discharge paperwork!!!! 2.21KG today!!!!

 

[Honeybear1976]

Fantastic thats great x

 

[dizz]

And we're home... and I'm terrified - first feed took us about an hour of off and onning to get down her - which worries me a lot since they've got me so obsessed on bean counting over every ml of food she takes... and new breast pump is crud - so having a quick emo fit about everything (along with my first properly cooked meal in a fortnight). Read my maternity notes - they're horrific reading with how unpleasantly everything's worded against me as a hostile patient to start with.

 

[Honeybear1976]

I have had traumatic experiences too so know how you feel. Dont get stressed about te feeding they will weigh her regularly and im sure she will gain. Persevere with the feeding it will be fine I promise, they make you really paranoid on those bloody wards. Any help I can be feel free to pm

 

[SabrinaKat]

I was a complete b*tch to some of the staff as well, so don't let that distract you at all!

I kept a log from day 1 (day 13 after NICU) of feeding times, wee/poo, etc., to reassure me that I was doing everything okay (in case the doctors asked) and even now, still do, but it made me feel more confident....

Take it one day/one hour at a time -- the first week, I don't think I slept at all, but enjoy watching your LO (and try and get some sleep).

best wishes

 

[vermeil]

congratulations on the birth of your daughter!

Any chance you can a lactation consultation (breastfeeding nurse, whatever they`re call where you are ) to come to your place and give you some help? I spoke with one multiple times during my son`s stay and it was really helpful. I ended up pumping for weeks during his nicu stay before he even started milk then 4 months total before we even started breastfeeding directly heh. But it`s such a huge timesaver in the long term.

My son weighed 4.5 pounds also when he came home but honestly by that time I thought he was HUGE though yes everyone were quick to point out how small he was =p