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#1 Scheris

Posted 01 January 2018 - 05:57 PM

Hi All,

Sorry if this is long. I've come to just have a little vent and hopefully some advice. I have no-one to talk to and lately feels like my world is crushing me. I'm on my third month of having my ex-26 weeker premmie in hospital. I think this last month has been the longest and worst, waiting for my little boy to come home. Unfortunately feels like we will be at the SCN for who knows how long because he is not doing much suck feeds and not really wanting to wake up for feeds. He does well one day and not so well the next. This is where we have been at for two and half weeks and feels like he just isn't wanting to progress. The nurses say it's up to him and when he wants to start feeding more.

I'm sick of going to hospital everyday. Home life isn't fairing so well either and things are not going well with the hubby so on top of the stress with the Bub, now getting stress from the hubby and the possibility of separation. I'm exhausted and drained and don't know how much longer I can keep it up. Wondering how other NICU mums coped with everything and how you kept going.

#2 Lallalla

Posted 01 January 2018 - 07:14 PM

Oh man, that has to be hard, 3 months in hospital is a long time!! I have no advice, we didn’t do time in NICU but DD was in and out of paediatrics a lot this year (she’s 18 months). It sucks, a lot. Puts a huge strain on everything at home too.

The only advice I have is actually for your DH. Whether you have a newborn or a child in hospital, let alone both at once, making huge life altering decisions, like leaving your wife for instance, is the last thing you should be doing. Right now the focus should be on getting through this and getting your little one home. Everything else can be worked out later.

#3 .Jerry.

Posted 01 January 2018 - 07:27 PM

So sorry to hear things are rough.

I had my DD at 27 weeks (way back, she is now 12!) and she spent three months in hospital, so I have some understanding of what you are going through.  
The going to the hospital does feel endless.

Is is just the suck feeds you are waiting on?
Do you have a lactation consultant (if breastfeeding)?
The LC was fabulous helping me.  That, and an amazing old-school midwife who I will never forget.

DD also wasn't good at waking for feeds.  She would fall asleep during feeds too.
I would unwrap her, undress her etc to wake her up, then feed again.  Also tickled her foot gently whilst feeding.
DD never took much really.  Still eats little.  I blame the tube-feeding. ;)  

Are they doing 2, 3 or 4 hourly feeds?

It is stressful on the whole family.  And if your DH isn't going up to hospital the same as you, I don't think they 'get it'.  But he needs to "get it" and get over it.

It's a long time with little sleep, and lots of worry.

Hope things improve soon.

#4 Micat

Posted 01 January 2018 - 07:34 PM

It’s a really really rough time. We had 3 months in NICU too. It does get tougher the longer you’re there, even though they’re technically healthier, the waiting and slow improvement is tough.
I don’t have much advice to give, I was a bit of a mess especially by the end- with further experience I’ve realised I had severe PND and anxiety. I should have been on medication and seeing a psychologist, but it took another premmie and 3 more years to do these things. So my only useful advice would be to get professional help.
As for your DH, I didn’t face this, but it’s not fair to you. Try to surround yourself with supportive people who will lift you up, as it’s a hard time to be doing it alone
Best wishes and let me know if you’d like to talk further

#5 Scheris

Posted 01 January 2018 - 08:01 PM

Thanks for the replies and good wishes, appreciate it in this time of loneliness.

View Post.Jerry., on 01 January 2018 - 07:27 PM, said:

DD also wasn't good at waking for feeds.  She would fall asleep during feeds too.
I would unwrap her, undress her etc to wake her up, then feed again.  Also tickled her foot gently whilst feeding.
DD never took much really.  Still eats little.  I blame the tube-feeding. ;)  

How did your LO get through this hurdle? I have done the same things and he falls asleep through the feed as well.

He was on 3rd hourly, he was changed to 4th hourly three days ago. The lactation nurse and midwife is helping at the hospital. It is just suck feeds we are waiting on. He suck feeds well at 12am and 8am, but the other times are hit and miss. He may suck feed, he may even wake up sometimes but they are random.

I spoke to a nurse I trusted at the NICU DS was at before being moved to SCN at the current hospital and she said that it just takes time and he will eventually do this on his own. Did anyone else find this was the case?

She also said that breastfeeding might be tiring him out and if bottlefeeding would get him home sooner, do that and work on the breastfeeding when he comes home and he's stronger. This makes sense to me, so I might just do bottle feeds at the hospital?

She also mentioned speaking to my GP about how I'm feeling and maybe I can see someone or perhaps speak to the social worker at the hospital.


#6 Micat

Posted 01 January 2018 - 08:29 PM

It’s really common for prems to be sleepy for feeding. My two were just the same. The first never took to Breast feeding so went straight to bottles. The second I persisted as was absolutely determined to Breast feed her and she was born at a later gestation, so I really thought it would happen. My pard was happy to stick to Breast only, but it was apparent she would take a long time, eventually he said that keeping her on Breast only would probably keep her in hospital at least 2 weeks longer than if we gave bottles. Went to bottles and she was home 2 days later. However, even with persistence for another 3 months attempting to Breast feed, she never took to it and ended up on bottles permanently. Which disappointed me. But I couldn’t have done those extra 2 weeks in hospital with her at the time, so in retrospect, t was worth it for us

#7 Freddie'sMum

Posted 01 January 2018 - 08:37 PM

You poor thing OP.

Three months is a very long time.  I agree with Lallalla above.  This is an incredibly stressful time and right now your DH just needs to support you and the LO.

Is there a support person at the hospital you can talk to ?

#8 FretfulMum

Posted 01 January 2018 - 09:02 PM

OP I totally get how you’re feeling about being in Hospital so long. DS1 was born at 30wks & spent 5wks in NICU & another 5wks in SCN. When he moved out of NICU I was SO excited as I thought he’d be home in about 2wks. It took much longer though. He was still so tiny (1.6kg when he moved to SCN) & didn’t have the strength to feed. He was so, so sleepy. He also had a brain bleed (& now has cerebral palsy) so I don’t know if that may have affected his muscle strength & ability to feed efficiently. I was at my wits ends & a shell of a person by the time he came home. Like PP, I also had PND & anxiety from his stressful delivery & 10wk Hospital stay.

Try not to have any expectations for your Bub, they will get there in the end & it will soon be a distant memory. Get yourself some help. That is the only way I could come to terms with what had happened & the grief I experienced. hugs to you OP.

#9 Mcc1985

Posted 01 January 2018 - 10:13 PM

I’m so sorry to hear you’re having a rough time, NICU is a horrible place to start your parenting journey and breastfeeding is hard at the best of times but so much harder with a weak tired prem.
We spent 3 months in hospital with our ex 27 weeker (weighing 659g at birth) and everyday was a struggle, breastfeeding was so hard and we ended up in special care breastfeeding one day and back to the NICU the next with infections, a horrible roller coaster.
Please ask the staff to get you in contact with a counselor I waited until the end of our hospital journey before I spoke with someone and it was the most relieving conversation I ever had, I could air everything, my worries, my journey, my concerns without having to sensor it.
Also a journal I found writing it all down at the end of the day really helped.

With hubby try to keep communication lines open you both need each other more than ever, we were quite snappy at each other but would communicate afterwards to apologize.

Also I found the end of the journey at hospital the hardest you’re so close to home but something is keeping you from being there, it’s so stressful.

I wish you and your little one all the best xx

#10 Dianalynch

Posted 01 January 2018 - 10:29 PM

Op you're doing great, and if bottles help both you and bubs then go for it.

As for your DH, he might need a reminder that now's not the time to be thinking about himself. If he does talk about separation, ask him how he'll manage his 50% caring responsibility on his own? With his work commitments? Should jolt him back to reality.

#11 daybreaker

Posted 01 January 2018 - 10:38 PM

My 30 week premmie DS was in the NICU and Special Care nursery for 8 weeks until he would have been 38 weeks. He weighed 3.2kg when he left so was a good weight but I remember the 1st night having him home and he was very upset and being 1st time parents we had no idea what to do. We called the Special Care nursery who said give him a bottle (formula or expressed I'm not sure) and this did the trick. He was also on 4 hourly feeds and in retrospect and after having 2 other children, I think now 4 hour intervals was too long for a breastfed baby as he was very unsettled (probably hungry). Something to keep in mind, when yours comes home. Don't be afraid to feed every 3 hours or even a little more often (on demand) if breastfed.

How old is your baby now (in terms of what would have been his gestation)? And how much does he weigh? My full term 2nd & 3rd children were great feeders as they weighed more at birth and I think weight and age definitely have a hand in how successful breastfeeding can be in the beginning. If your baby is still young and small, I agree with the nurses that you need to just give it time.

Bottle feeding (with formula) instead is definitely a solution, it depends how important breastfeeding is to you. But I think bottle feeding expressed milk would be very difficult (takes too long) and prolonged bottle-feeding would make it hard to go back to the breast for the baby.

My DH didn't go to the hospital nearly as much as me either and I did become resentful too that he didn't want to and didn't have to. It is also a very tiring ordeal but it does give you time to learn as much as you can about caring for a baby before taking him home which is a plus.

All the best.

#12 Scheris

Posted 02 January 2018 - 07:21 AM

DS is now 39 weeks, 40 on Friday. He's a good 2.960kg. I was expecting him to be wanting to feed at this stage but maybe I was putting too much pressure on him and myself. I just wanted him to be home so badly, I set myself up for disappointment.

I would love to breastfeed as much as I can but at this stage getting him home is more important. I guess it's not so bad as my supply is quite low anyway. Always has been even after trying all the remedies, medication and pumping like clockwork 24/7.

I am a bit resentful at DH about the hospital visits. Feels like he doesn't care as much as I do. I've put life on hold since DS birth and my whole life revolves around being with DS but seems like DH isn't as phased and dedicated as me and I'm misconstrued it as not caring. Are all men like this? Feels like I'm being hysterical at times.

#13 .Jerry.

Posted 02 January 2018 - 07:33 AM

Don't rush into bottle feeding just to get DS home if you want to keep breastfeeding.  Have you seen a lactation consultant?  I really was ready to give up until I had the help of LC and a great midwife.  You need to ask at the hospital for help and don't take dismissive attitudes from staff.  One midwife had me in tears with her attitude. :(
I am so glad I kept going.  Though I know most prems go home bottle feeding as it is easier for them to take the feed that way.
We ended up combined feeding breast, bottle EBM and bottle formula (with additives to fatten her up).  But we didn't introduce the bottle till she was 6 weeks old or so.

It isn't unusual to still be in hospital at the due date.  Frustrating though it may be.

I took on the attitude that going tot he hospital was my "job" for that period.  I took a business-like attitude to it all, which I think helped, but I am pretty practical and non-emotional.  I just got up, dressed for "work", went to hospital for day.
DP was less involved, only going up every couple of days for a short time.
For the record, he is a very involved father now, even was SAHP for a few years.

This too, shall pass.  What seemed like an eternity in NICU is now a blip on the radar of the life of my 12 year old. :)

Deep breaths.  You can do it.
:)

#14 Riotproof

Posted 02 January 2018 - 07:34 AM

I'm so sorry you're having such a hard time.

Your dh's reaction is probably in the realm of normal, but still not overly helpful. I remember my dh was terrified of holding dd, and he seemed to think that I just knew what to do, so it was easier to let me do it. It wasn't so much that, but my hormones compelled me to want to hold my baby. I was scared of hurting too, but wanting won.

Re feeding, have you been given much support re expressing? The best tip I got when Ds needed it, was to look at a photo or preferably video of your baby while expressing. It can really help with letdown. And make sure you are remembering to feed yourself.
It is exhausting though, I know.

Something else to note, is that for my kids, progress on feeding came fast and furious. One day, it was a struggle, next day they got it. So don't lose hope.

I hope you are home with your baby soon. It's something no one can understand until they've been there, I felt like my heart was ripped in two.

#15 Soontobegran

Posted 02 January 2018 - 07:36 AM

The SCN journey puts so much strain on mental health and relationships.
I have not had a premature baby but have worked in SCN so I can only report on what I have observed.

No two babies are the same and whilst your little one has reached term there has been a journey that your DS has been on that is unlike that of those born at term so sucking is something that doesn't always come when expected.
For weeks they are conserving energy to keep warm and establish some body fat and to mature lungs etc so there is nothing left to suck.
It sounds as though you are well supported in the SCN and from my experience there is that there is almost always an avenue to seek psychological support so please ask them.....if not see your GP.

Relationships are tested too.......it is traumatic for the father and for some reason it seems they often don't quite cope with the sudden loss of your attention and time....this too can be dealt with by psychological care and I encourage you to broach this with him.

Lots of good luck...please do not delay seeking help.......I am sure things will slot into place with the feedings very soon.

#16 Manicmum

Posted 02 January 2018 - 07:40 AM

You are under enormous pressure, don’t kids yourself.

They turn around quickly.

Mine were only 6 weeks early and it felt like forever, they told be front the start not to expect them home before full term. The nurses however kept saying “a few days”, which was misleading and stressful because it felt like I was doing something wrong.

Ask to see the cousellor, lactation consultant and ask if they have a room for parents to stay overnight with bubs in room, it’s what got us home in the end, they (babies) kept their temps overnight and fed. Try to get the nurses not to tube feed as this keeps them in for longer. One of mine was as slow feeder, the nurses were busy so would tube feed because they didn’t have time.

Best wishes

#17 redchick

Posted 10 January 2018 - 01:57 PM

OP you are having such a hard time - you poor thing!

FWIW my boys were born at 37 weeks and one was the same weight as your LO is now. Both had gastric tubes for top up feeds for about ten days as they weren’t strong enough to feed for very long. I think that it sounds like your LO is doing great!

In regard to DHs- I know mine and I approached the caring for baby thing totally differently. For me it was a much more emotional attachment and need to get everything done. DH said to me that when the boys were newborns for him it was 95% of getting things done just coz they had to get done and 5% done out of love. Your DH may also feel like there is nothing useful he can do at the moment. Regardless of the reasons though you are both going through a very stressful time. Definitely if you can chat to someone and perhaps your DH needs to chat to someone too?

All the best and hope your LO is home soon,

RC

Edited for bad typing

Edited by redchick, 10 January 2018 - 01:58 PM.


#18 Winging it Mum

Posted 10 January 2018 - 04:00 PM

OP, it's hard, no-one is going to kid you about that. My ex premmie is now 11 and he was born at just under 24 weeks. He spent his first 7 months in hospital, 4 of those in NICU. It seems like such a long time ago now.

All I can suggest is to just take each day as it comes (sometimes it can be an hour by hour thing) & realise it's ok to not cope. It's also ok for your DH to not cope either but you would hope that for the most part you could support each other. Does the hospital have a social worker you can speak to? We used to have one come around to "chat" with the mums or dads if needed.

I personally coped by going back to work part time after 4 months - not everyone's cup of tea, but I needed something besides hospital for some of my day. They were long, draining days and everyone is different.

It is exhausting, but there was also the very odd day where I didn't go in but grandparents or DH would go in my place as I couldn't bear him not to have any family with him.

It's hard, but I hope you can find a way to reconnect and give strength to each other. I to hope your bubs comes home soon to! Take care.

#19 Cat12

Posted 30 January 2018 - 10:33 PM

How’s it going OP? Is your baby boy home with you?

Cat

#20 Scheris

Posted 01 February 2018 - 12:06 PM

Hi All!

My Bub came home on his due date, after one of the wonderful nurses at the SCN changed tack and changed his feeding from on schedule to on demand and got the other nurses to stick the same routines. Bub seemed to like that better and within two days, we were rooming in and then home!

I think if he went for any longer in hospital I would have cracked it. I'm glad he came home when he did, so happy he is now home with me.

Thank you to everyone for all the kind words, it really helped me in that last week.

#21 Jingleflea

Posted 01 February 2018 - 12:45 PM

That's really good to hear.

#22 AuntyJJJ

Posted 01 February 2018 - 01:17 PM

Husbands often withdraw when a new baby comes and make it extra devastating, because your expectations and hopes are so much higher, so you feel even more disappointed.

Wait until things feel normal then get counselling. I was devastated by my husband's attitude to visiting me in hospital when I was stuck for a week post birth (he turned up for an hour a day, complained of being tired as stayed up all night gaming - was on parental leave but never touched baby!)

It took years for us to feel ok with each other, and what I feel he failed to do. He was depressed. I realise now there's so much to look forward to and the past is over.

#23 Dirty Cat

Posted 04 February 2018 - 07:40 AM

View PostAuntyJJJ, on 01 February 2018 - 01:17 PM, said:

Husbands often withdraw when a new baby comes and make it extra devastating, because your expectations and hopes are so much higher, so you feel even more disappointed.

Wait until things feel normal then get counselling. I was devastated by my husband's attitude to visiting me in hospital when I was stuck for a week post birth (he turned up for an hour a day, complained of being tired as stayed up all night gaming - was on parental leave but never touched baby!)

It took years for us to feel ok with each other, and what I feel he failed to do. He was depressed. I realise now there's so much to look forward to and the past is over.

Prem baby's and time in NICU is completely different to a week in hospital.





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