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baby born at 35 weeks

(26 Posts)
elliejjtiny Fri 07-Jun-13 02:57:58

Just thought I'd come and introduce myself. Had a C-section on Monday at 35+3. My DS4 has a cleft lip and palate (diagnosed at 20 weeks) and was taken to intensive care as the surgeons were finishing sewing me up because he was grunting. He was on cpap, hot cot and drip but now been downgraded to special care and in a normal cot. He's got a ng tube, sats monitor and apnea alarm. He weighs 7lb 2oz. After 3 awful days on the postnatal ward were everyone else had their babies with them I'm now home with my baby still in the hospital. I'm expressing and finding it all really hard.

AlisonL1981 Mon 17-Jun-13 08:44:48

Hi, I've just seen your thread and thought id share my story with you. My little boy was born at 32+5. I had him very quickly whilst at home alone! He weighed 4lb 6oz at birth and dropped to 4lb in the first week. I persevered with expressing although there were many times I wanted to give up, I had cracked and sore nipples, a bout of mastitis and thrush in my boobs! I kept trying breast feeding but Harry wouldn't do it, he's a stubborn little thing! The hospital recommended not bottle feeding so not to confuse him so with continued to tune feed and attempt the breast daily. After 3 weeks in scu he contracted mrsa and was moved to isolation where I stopped trying to feed him for a few days whilst he was treated. There was minimal contact, we had to wear gloves and aprons at all times. After a week in isolation I stated to try feeding him again, staying all day to do feeding on demand and the hospital continued the tube feeds at night. At the weekend I stayed in the parents room with Harry and did on demand feeding solely. I cracked in the middle of Friday night and Harry was given ebm in a bottle. The lovely night shift midwife saw I was losing it. I was 'told off' in the morning and told he wouldn't take the breast after being on the bottle so we went back to breast on demand for an exhausting 2 full days. I was told if Harry put weight on over the weekend we could go home Monday. I didn't sleep for 2 days, every time he murmured I tried him, he'd stuck for 2-3 minutes and go back to sleep! He was given his vitamin in a cup but I ended up spilling more on him than him drinking it do the well meaning midwife gavel a bottle for the vitamins. I cheated on Sunday night, hand expressed into the bottle and fed Harry. Monday morning came, Harry was weighted and had put on 1 ounce! He was allowed to go home! So overjoyed!

He has now been at hone for 8 weeks. I have mixed bottle and breast feeding and he is fine with both! In the start I expressed and gave it to him on a bottle mainly as I was worried with only breast feeding his weight would drop and he would end up back in hospital, over time he got the hang of breast feeding. He still falls asleep quicker at the breast but that's sometimes helpful for nighttime feeds! I express a couple of times a day and each expressing session I get enough for 2 feeds so daddy or grandma can feed him.

At 12 week Harry had doubled his birth weight and was 8lb 6oz! I don't know where my tiny baby has gone!

Scu was a very upsetting and scary time but when we look back at the photos and videos we have some good memories. Lots if stories to tell Harry when he'd older. It all feels like a lifetime ago now!

Your little one will be at home before you know it! Xxx

lotsofcheese Sat 15-Jun-13 21:00:18

Sorry to hear you're under the weather & missing cuddles.

Maybe your partner could take a video or some photos for you? Or bring back a blanket from the incubator?

Hope you're better soon. Am guessing you're still infective if you have a high temperature etc?

elliejjtiny Sat 15-Jun-13 14:01:21

Thanks everyone. miaow love that your DD slapped the dr.

I've got a cold so can't visit the unit at the moment. Anyone know when I can go back? The sore throat/headache etc has gone but I'm still producing bucket loads of snot and coughing, argh. I phoned his nurse earlier and he's having about half his feeds by bottle and the other half by tube now. I'm desperate to see him and cuddle him again. I won't be moaning that it's boring cuddling a sleeping baby for 3 hours again. Sorry for the whinge.

Poppet45 Tue 11-Jun-13 13:22:49

Love DD's response to the situation. And know just what you mean by feisty prems. My dd's scowl is legendary... And rather funny.

MiaowTheCat Tue 11-Jun-13 09:27:17

Oh I can laugh at it now - one of the staff on the post-natal ward had been through it all herself and knew exactly how fucked up it all was (that woman is seriously that ward's biggest bloody asset and they really don't use her well - the support she could be giving to the transitional care families is insane).

Then when the second baby arrived, also technically prem (but huuuge so gawd I felt like a fraud when they were calling her premature!), the transitional care bay in the OTHER hospital in town was being redecorated - so I was in a normal ward AGAIN (until I caused a small mutiny over the no curtains around beds policy and they suddenly mysteriously found me a side room - oops!).

Stuff that went on first time around was passed to the senior midwifery bods when I had to meet with the birth trauma midwife prior to the second delivery so hopefully as they fully integrate the two hospitals within the NHS trust the better practice (it was still like something out of Carry On Midwife) in the second hospital will spread to the first hospital and not vice versa.

DD1 made her opinion on it all very clear when they were jabbing her in the heels for bloods while in there - she slapped, a perfect, teeny tiny, proper slap, the doctor doing the heel jabbing! Inside I cheered her on (she's still a feisty little bugger now - god help me when she turns two!)

Poppet45 Mon 10-Jun-13 20:28:52

Am so shocked to hear of the postnatal treatment some of you have had. Dd was born at 27 weeks and like the other mums who'd won the 'having the shittest time in the maternity unit' award it did at least entitle us to a private room. They also let me stay in for 5 days to be close to her. Not that that helped for the next nine weeks... Anyway 22 months later shes still bfing despite chronic lung, reflux, cmpi and tongue and lip ties. It can be done and if you need any advice pm me.

sar1133 Sun 09-Jun-13 10:17:35

Miaow they did the same tome, put me back on the maternity ward with other new full term mums and their babies for 2 nights. One 16 yr old mum shouted across the ward to me "I don't know how your coping with your baby in intensive care! " I was so angry the scbu nurses asked the midwives to help me express and the young ones said no you need to be sat next to your baby to do that and he's not here! Go figure! Lots of stories about the same one pre labour that I won't go into but it just added to the stress and upset. I have upmost respect for scbu though and don't worry in the beginning it feels like going home will never happen but it soon will. And then they support you after. I felt even more alone as my sons father is not in a relationship with me and he could only visit twice a week in the beginning but we get through it because we are their mums x x x

MiaowTheCat Sat 08-Jun-13 20:04:24

I found that if I stood still for more than 10 seconds on the post-natal ward, even considering I was only there for the baby - someone would be offering me pain relief! (You don't get THAT many drug offers in the worst part of town in the dead of night!)

The having to ram feed into them I found REALLY hard-going. It was incredibly frustrating with particularly my 36 weeker to HAVE to sit there stripping her off, tickling her feet, coaxing every ml I could into her to reach their magic target number for that day... while on a ward with full-termers (for the sake of 7 chuffing days) who were being allowed to feed on-demand and go with what the baby wanted... as for NG tubes - my 33 weeker was tube fed for a while and, despite saying repeatedly there were parts I was very unconfident doing (getting the aspiration to check it was stomach contents basically) - I was bullied into doing it and treated pretty appallingly... again - I had to do this on a bed in the middle of the post-natal ward in full view of all the full-termers so I felt like a right freak show, plus as we were trying to get her to take as much as possible via bottle of expressed milk before tubing the rest at that point - I had to do the whole Walk of Shame up to the nurses' desk to get a bottle teat... remember one occasion where I was having to do so past a very opinionated militant breastfeeder who was tutting and making comments every single time.... so I left the bed curtains open - and she got treated to me signing out a bottle of expressed milk (always got irrationally pissed off at having to get an adult to consent to me signing out my own bodily fluids!), coaxing desperately this little thing to feed while sobbing cos I was so desperate to get home, and then finishing off with an NG tube feed after that... funnily, next Walk of Shame time the comments had stopped.

Also had someone in the bed opposite who proceeded to, after being dropped on the ward with loads of congratulations and how amazingly she'd done (which really hurt since no one had congratulated us, and I felt like my forceps preemie delivery was something I was meant to feel ashamed of), ring every single person in her mobile phonebook and relay tales of her "premature baby ordeal"... the baby was a day before due date. Oh how I wanted to insert her phone somewhere she could do pelvic floor exercises WHILE dialling numbers on it after the 10th phonecall at 3am.

I found putting her in clothes WE had chosen really made a difference psychologically - so much of her wardrobe had been emergency rushes out to find stuff that fitted by the grandmas - the first things WE bought her and dressed her in really really mattered (it was the little ducklings set of 7 things in Mothercare... can still remember it now and it's only recently gone off to be made into a memory bear with lots of her preemie clothes)

People don't believe me that either my 14 month old, OR my 12 week old were premature babies nowadays though! The best thing I was told by one of the ward staff was that once they take off - they really really do suddenly start to fly... we went from having to beg 12mls of feed down by bottle, to her taking a full required amount of feed and having her NG tube out and discharge being discussed within about 3 days - she suddenly just worked it all out! Now she screams fucking blue murder when the end of the food's reached and will eat absolutely ANYTHING!

mrsbugsywugsy Sat 08-Jun-13 19:33:11

hi Ellie.

congratulations on your ds flowers

my dd was born at 35 weeks and is now 5 months old. she only weighed 5lb 5oz and was fed through an ng tube as she didn't yet have her suck reflex.

her early birth was a shock and I also found the postnatal ward to be a special kind of hell and after a few days I really thought I was cracking up. I have since spoken to others who have had a baby in scbu and it seems to be a very common experience.

in terms of bfing, i dont know anything about cleft palates, but what worked for us was initially just holding dd to my breast and encouraging her to take my nipple in her mouth. to start with that was all she did, then she started to take the odd suck. over a few days she started to feed properly at the breast and her top ups were gradually reduced until after one week she was being fully breastfed and we were discharged. in the meantime I was expressing after every feed to build my supply.

some of the scbu nurses were very encouraging about bfing, others were... less so, and seemed to think it was inevitable that dd would be mixed fed at best. perhaps this was because I never managed to express very much. but it turns out I am just bad at expressing because now at 5mo dd is still fully breastfed and is putting on weight well.

do you know how long he is expected to be in scbu for?

elliejjtiny Sat 08-Jun-13 19:29:06

Thanks everyone. DS4's nurse showed me where they keep the baby clothes today and encouraged me to top and tail him and change his clothes and bedding. So today he's dressed in something that was chosen by me smile. We can bring in clothes from home but if he wears the scbu clothes they do the washing and as DH is in charge of the washing while I recover from C-section I had to let him choose.

He passed his hearing test yesterday, which I wasn't expecting although he'll be monitored for hearing problems anyway because of the cleft. Tried to bf him again today but he was hungry and getting frustrated so we switched to bottle for a few mls and then did the rest by tube.

atrcts the electric pump I've borrowed from the hospital has a dial you can turn to make the suction more gentle.

So glad I'm not the only one who went home. They would have let me stay longer, although not the whole time I don't think, but one more night in that place would have tipped me over the edge. Glad it's better in parent accommodation.

atrcts Sat 08-Jun-13 17:57:35

I can understand much of what you describe - I gave birth 48 hrs ago to a 35 weeker weighing 5lb.

I am finding it so hard to had express, and am so keen to be able to breastfeed. It's hard to see someone so tiny being pumped so much formula that he cries and wriggles and then vomits afterwards. Everything in me is screaming "stop it!" but at the same time I realise he will fail to thrive if he's not fed. He's already lost weight from being 5lb 1 to 4 lb 7 in just 48 hours, so I know I need to go along with his management as much as I can.

I think I will be allowed to machine express tonight but in my last birth I used one and found it pinched a bit - and took an hour to get a tiny amount it didn't seem worth it. So I am hoping this time will work better blush

I am telling myself we're lucky to be as well as we are at such a young age - and that it won't always be like this. He WILL be home with me and fed adequately in the end (one way or the other), and i am telling myself that it's worth hanging on to that thought in the middle of the night when it can all seem too much smile

LunaticFringe Sat 08-Jun-13 15:07:48

Message withdrawn at poster's request.

MiaowTheCat Sat 08-Jun-13 14:37:47

Our hospital kept me in throughout - would have been lovely but it was a corner of the post-natal ward from hell!

In the end Bliss had to sort me out counselling as I fell apart totally in the aftermath of the 33 week arrival - there were other factors at play though, but things were all interlinked and when the pressure was off a bit I just crashed.

To get us home, and protect my mental health somewhat (see the post-natal ward from hell comments above - I was really suffering from the environment) I did in the end sacrifice breastfeeding - I pumped what I could, fed her it in a bottle until a combination of my supply and the breastpump motor both died... but it turned out about 8-9 months down the line that I found a tongue tie no one had checked for - so it wouldn't have been successful anyway! I feel utterly no guilt or shame for making the decision I did in that regard - I would have crumbled to the point of being locked up having to live on that ward for another couple of weeks. Took me a while to shed that guilt - but in the end I refused to carry it around anymore.

sar1133 Sat 08-Jun-13 05:05:03

And don't worry about the meltdown it's natural I still get them especially after watching corrie this week. It is hard watching the nurses care for them but at my scbu we were encouraged to do it. I found it tricky in the beginning as I wasn't sure what to do and what I could do, it took me about 5 days being on the unit to feel comfortable. And having the apnea alarm off is v positive! My son didn't have his off until the night before discharge. Think your on your way! X x x

sar1133 Sat 08-Jun-13 04:59:02

I have a 33 weeker who spent 2 weeks on scbu. I found it hard leaving him and after 3 nights I took accommodation at the hospital. Nobody prepares you for this and nobody understands unless they have been through it themselves. The fact that he started off in a hot cot is fab. My son went through from incubator to cot to hot cot back to cot but thankfully never had breathing difficulties which I'm thankful to the steroids they gave me when my waters broke. He was 4lb 1oz at birth is now 12 weeks and 8lb 13 oz. so he's doing well. I turned feeding him into a one woman mission whilst in hospital. Hope your ok x

Littleballofhate Sat 08-Jun-13 04:32:42

Excellent news! The parent accommodation is brilliant! Those 48 hours really helped us feel comfortable with our baby, whilst still having medical assistance at hand. So happy to hear he got some "boob" time. That must have been so wonderful for you both smile

LunaticFringe Fri 07-Jun-13 23:19:07

Message withdrawn at poster's request.

InspectorRebus Fri 07-Jun-13 23:05:46

Hi Ellie, congrats.

My kids were not early, but both had clefts, and if you want to know more, just ask.

elliejjtiny Fri 07-Jun-13 22:32:26

Thankyou all. I burst into tears at my postnatal check this morning as I was feeling that after not giving birth by myself (C-section), having nurses look after him most of the time and also not being able to breastfeed made me feel like he wasn't really mine. The midwife asked me if I'd tried to breastfeed and when I said no because I'd been told he couldn't she said to give it a go as it would help with bonding to try, even if it doesn't work. He sat quite happily with my boob in his mouth, having the occasional suck. I don't think he got more than a lick of milk but I felt so much better. The apnea alarm came off today too. I'm going back in to stay in the parents accommodation for 48 hours before he is discharged so I can do all his feeds, nappies etc. Looking forward to being able to be with him all the time but dreading another stay in hospital. Will definitely bring a duvet this time smile.

RoooneyMara Fri 07-Jun-13 19:48:25

Hi, another hand hold here, may I just add that your little one weighs more than my full term ds3 did smile sothat is very very good

Wishing you all the best and I will pray he is home soon xxx

MiaowTheCat Fri 07-Jun-13 19:40:33

Congratulations and that's a brilliant weight! I have a 33 weeker and a just-36 weeker and people said my 36 weeker was big coming in at 7lb exactly!

The 33 weeker's now a whopping 14 month old who was getting mistaken for a 2 year old before her 1st birthday... it seems interminable at the time - but the whole NICU/horrid post-natal ward without your baby (seriously the NHS needs to sort this crap out) experience is a blink of an eye in actuality.

Littleballofhate Fri 07-Jun-13 03:47:00

Btw..I remember the empty arms feeling of leaving hospital without my son. So painful to walk by the lonely waiting nursery! My mum gave me the wonderful advise to use the time until he was released to heal from the birth. Family and friends took care of meals, whilst I rested and slept.
I hope you have some RL support to nurture you during these post birth days.

lotsofcheese Fri 07-Jun-13 03:43:55

Just wanted to lend my support & say that I understand. I've had 2 prems go through nicu/scbu & it's tough, especially the expressing. And the hormones will be crashing down too.

DD was born at 35+6 & went to scbu for grunting, low sugars & then developed jaundice. She was in for 8 days but unfortunately didn't get the hang of BF plus my supply failed despite expressing.

Hoping you can get plenty of cuddles & skin to skin contact. And buying an outfit/incubator toy were nice things to do as well.

Sending your wee one strength & hoping your nicu stay is a short one.

Littleballofhate Fri 07-Jun-13 03:39:19

Congratulations on the birth of your sweet baby boy smile it does sound like he is moving forward in a really excellent way. My son was born at 32 weeks, I also expressed and found it difficult. I just kept reminding myself my milk was something I could do to help him get stronger....that being said I decided with the help of my lovely midwife to discontinue pumping about three weeks later. I was exhausted and had very sore cracked nipples.
16 years later my little preemie is a strong tall teenager.
You will make the right choices for you and your little one...xx

FidgetPie Fri 07-Jun-13 03:08:19

Didn't want to read and run, so offering you a virtual hug.
He sounds a really good weight and his progress so far is really promising.

(Great that you are expressing - different circumstances, but a friend had a 5lb prem baby who was in hospital for around a week and they went on to breastfeed for 6 months - if you decide to try and carry on, just ask for support if you need it)

I hope you have your baby home with you really soon.

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