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Help me understand this please (NICU)


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#1 Caribou

Posted 13 September 2016 - 12:50 PM

when I had my DD, she was in NICU, it was hard, and I frankly don't want to do it again.

however, 5 years later, I am pregnant, and hopefully I won't be in the same situation again, but I need to understand this.

Why can't mums stay overnight with their babies in NICU to establish Bfing etc?

What are my rights regarding NICU? can I just park myself in the chair next to the crib and they just have to deal with it?

I am going to talk to my OB about my anxiety regarding NICU, but I just wanted to get a clearer picture beforehand so I ask all the right questions.

TIA.

#2 Riotproof

Posted 13 September 2016 - 12:57 PM

Madnesscraves, I'm so sorry you are feeling so anxious.

Can I ask why your daughter was admitted? Is it a scenario that is likely to be repeated?

Ime, they will absolutely help you establish breastfeeding, but it will likely involve some pumping and feeding with bottles when you are not there, or tube if the baby can't suck.

#3 Caribou

Posted 13 September 2016 - 01:05 PM

Riotproof - I had pre-esclampia, she was born 1.8kg at 36 weeks, they wanted to fatten her up a bit.

I just felt I didn't get the support I needed in NICU to BF her. I complained to the paed at one point and she had to tell the nurses to let me try. luckily DD was able to go home at 37 weeks, even though one nurse tried to stop it saying I wasn't feeding her right. I pointed out she made me feed DD until she vomited her milk up when I pointed out she was full. I could read her signs. luckily the Paed was on my side. I have a healthy happy DD who's 5.

I just don't want a repeat of last time. and the NICU is 1.5 hours from home, I don't want to be travelling daily for it either. I'd like to stay close. but not leave the hospital.

I just don't understand why there isn't a system i n place for mums with babies in NICU unlike hospitals who let parents stay on ward overnight.

#4 lucky 2

Posted 13 September 2016 - 01:06 PM

Hi, it depends on the unit your baby may or may not be admitted to.
Why do parents get separated from sick or prem babies?
I think it is a design, space and priority issue.
I think it's wrong and not best practice but hopefully, it will be the future of NICU's, where parents have a bed beside the incubator.
I doubt there are any rules prohibiting you being their 24/7. But it's not the ideal place for you to get rest, because of the design of most Australian NICU's.
You need more info, I hope things work out easier for all of you this time. :)

I'm in Vic and babies/mothers have access to a Lactation Consultant in the SCN, especially in the Tertiary level hospitals which is where you find the NICU's.
Unfortunately, we are a long way from this-
http://www.vsshp.fi/...es/default.aspx

Edited by lucky 2, 13 September 2016 - 01:13 PM.


#5 Mcc1985

Posted 13 September 2016 - 01:06 PM

Congratulations on your pregnancy and I hope you don't have to go through NICU again.

I think it depends on the baby and your situation. We were allowed to be in NICU for as long as we wanted, and had a reclining chair to sleep in.
I couldn't stay with baby because I was too unwell and she wasn't big enough to have the sucking reflex so we couldn't breastfeed to start with but could be there and cuddle as much as she could cope with.

#6 Bone Apple Tea

Posted 13 September 2016 - 01:09 PM

It may pay to speak to the hospital to clarify what is available.

I know the hospital my DD was at, let mums with babies in special care / NICU stay onsite.  Not on the ward.  I think they may had some sort of residential colleges / nursing accommodation.  There may have been some fees involved.

ETA - there were reclining chairs beside each baby.  I came and went as I pleased, including some late at night and crack of dawn visits.  There weren't any restrictions placed on parents, but I'm pretty sure they would have had a chat if I had attempted to stay for days on end.  Oh and I agree with you.  It is horrid being separated from your baby.  It felt more like she was the property of the hospital and not really mine at all.

.

Edited by canstayferal, 13 September 2016 - 01:13 PM.


#7 ~Bob~

Posted 13 September 2016 - 01:11 PM

I am sorry that you are having this anxiety. I hope your OB can provide you with some comfort.

From all the nicu's ive seen, I think it's a space and safety issue. I've never seen enough room in NICU for flip out beds.

Apart from the space issue, there's the safety aspect that staff need unobstructed access to the cots in the case of an emergency, so I think that's another reason they don't make the rooms bigger.

They normally have some family rooms, though they are offered on a priority basis to parents of critically ill or terminally ill babies or families that live long distances from the hospital. There's also the option of Ronald McDonald house if it's near your hospital. Perhaps talk to the social workers too. They might know of charities with units near the hospital that are offered for families too.

Staff are generally pretty good in letting families stay after hours, but I imagine they will gently encourage you to leave so that you can get enough rest to look after yourself so that you can best care for your baby.

#8 Riotproof

Posted 13 September 2016 - 01:13 PM

I assume, given your history that your ob will be monitoring you carefully. Have you met with them to find out if they have any preventative measures in place?
It is so scary expecting your baby to be premature. I know I spent ions looking at statistics based on weeks gestation.

Is it possible to speak to the nicu organiser? Go on a tour? Things may very well have changed since you were there last. Can you speak to their lactation consultant?

#9 Poppylove3

Posted 13 September 2016 - 01:20 PM

Where are you located? My daughter was in the nicu in Victoria. I could be there for as long as I wanted/ could handle. I was very unwell though so really struggled getting there. In the beginning they would take my bed down but due to the space needed this could only be for limited time. Once I could go in a wheelchair I could be there 24/7. They did ask me to leave while putting in new lines etc as it was very distressing.
I'm also pregnant again and completely understand your anxiety relating to it all. I hope you have a good ob/ gp to talk to. Mines been a lifesaver.

#10 IShallWearTinsel

Posted 13 September 2016 - 01:27 PM

If definitely depends on the hospital. I was at PMH for a month with my youngest, and I was able to stay in the parent accommodation down the hallway, and they would call me for feeds overnight.

#11 Mollyksy

Posted 13 September 2016 - 01:31 PM

Congratulations on your pregnancy. Are you hoping to go private or public? I ask as my private hospital had a version of NICU but not for the most serious of conditions, the next level down and beyond.  I was on hospital bedrest with threatened labour from 27 weeks and I knew that if I delivered before 34 weeks, it would be at the public hospital nearby and using their NICU. But if it was after 34 weeks and baby's condition was not the most serious case, he would go to the private NICU. The point of my very long story is that the private hospital had an arrangement where you could basically rent a room to stay close to baby after you had been discharged yourself as a patient. So you'd get the meals and the bed basically, and still be close.

I too spent weeks researching gestations and stats and outcomes.

If you are delivering public or privately at a hospital without a NICU, look into Ronald McDonald house or other nearby affiliated accommodation. I know that is a little difficult with an almost 6 year old by then. Speak to the hospital social workers maybe. Tour the NICU if you can.

As PP have said, you'll have 24 hr access likely but the nurses will encourage you to look after yourself too to be in the best shape to look after bub.

All the best.

#12 Caribou

Posted 13 September 2016 - 01:36 PM

I'm going private. it's the same hospital as I delivered last time. I liked my OB and she worked her butt off to get more nights for me in the hospital. she was really understanding. the NICU was just down the hall from my room.

The hospital definitely doesn't have any support in place for mums with babies in NCIU, but neither does my local hospital either.

I did see they had a emotional wellbeing program, and I might have a talk to them as well as the hospital over how to handle this.

Hopefully, the situation won't repeat itself, but I just wanted to prepare myself for the worse if it comes to it. I don't want to do what I did last time, bury my head in the sand and deny anything was wrong. It really messed up my head and I had post natal depression afterwards. took a lot of counselling to get past the guilt of failing my DD and going home without her.

#13 Mollyksy

Posted 13 September 2016 - 01:44 PM

You are definitely starting from a position of strength and empowerment, and asking all the right questions.  Do you know if the hospital would be willing to 'rent' you a room? I don't know how much it cost but if it is do-able...

Definitely talk to both hospitals. Hopefully they have social workers or the like that can give you the options. But I think in terms of keeping mentally healthy you are very self aware and proactive so that should assist you should you end up needing an early delivery again.

I'm glad you have a good relationship with the Ob too.

All the best.

#14 popsicle :)

Posted 13 September 2016 - 02:05 PM

Congratulations on your pregnancy OP!

I developed Pre-eclampsia with my DS1 at 29 weeks.  I lasted until 35 weeks (just!) on strict bed rest.

DS1 was born 2kg 30g and we were in the Special Care Nursery for 4 weeks as he was VERY VERY slow to put on weight and wouldn't feed properly etc - even when we left hospital he was only 2.1kgs.

We were in a private hospital and they allowed me to stay.

I have since had DS2 last year and didn't experience any pre-eclampsia.

Every pregnancy is different :smile:

I do know that you are not allowed to stay in the NICU ward at our public hospital.

Perhaps its a policy decision of the individual hospital/Government.

NICUs at Public Hospitals need to cater for more sick/earlier babies and due to their high needs they can't risk an excess of people being there which may inhibit dealing with an emergency.

I know our Private Hospital has a deal with our Public Hospital that they will take all babies under 32 weeks or in need of specialist care - simply because the Private does not have the facilities to deal with such special cases.

When babies of the private hospital are transferred over to the public, parents are not allowed to stay in the NICU, even though they are private patients.

#15 Wonderstruck

Posted 13 September 2016 - 02:13 PM

I'm not sure on how it works 100% but I just did the hospital tour at my hospital on the weekend I can't remember if your OB delivers at that hospital (the other one that's nearby and Catholic based).

But their NICU was different to what I had seen elsewhere - each bub in NICU had its own room. It had a large lounge chair. I don't know if they'd let you sleep in there but they may do given you wouldn't be disturbing anyone else or their babies...maybe something to ring and ask?

I must say I was quite impressed with this and was originally tossing up which hospital but turned out my OB only delivered at the one I'm at. The midwives were also amazing and seemed to be all for whatever suited you.

I hope your bub doesn't need NICU in the end.

Edited by McBubba2016, 13 September 2016 - 02:15 PM.


#16 lucky 2

Posted 13 September 2016 - 02:30 PM

Quote

Perhaps its a policy decision of the individual hospital/Government.

NICUs at Public Hospitals need to cater for more sick/earlier babies and due to their high needs they can't risk an excess of people being there which may inhibit dealing with an emergency.
I don't think it's about needing space to respond to a baby or risk, it's just the way NICU's and SCN's have been designed in the past, the wellbeing of the new family unit hasn't been  a priority.
It's going to take a while things to change to the "family room" model of care, I hope things keep heading in this direction.

#17 Poke

Posted 13 September 2016 - 03:08 PM

Madness I had what I would describe as a crappy hospital experience when my second child was born premmie. The hospital was very busy and i felt like her and my care was compromised as a result. Not in NICU but in special care. And in hindsight those issues played into the post natal depression I experienced.

When I was pregnant with my third I was incredibly anxious about even being at the hospital again but we had a much better experience despite an even earlier premmie and much longer stay.
The big thing that helped was having a supportive gp who understood my issues. She got me linked into the local perinatal mental health team. Not only did they provide counselling in the lead up to the birth but they acted as an advocate for us with the hospital. I'm not sure if that actually made an difference but I felt like we had someone else in our corner so i didn't feel as pressured. That and my husband took on the role of 'chef questioner'. I was sick and exhausted so having him ask 'why'to everything was so important. I think him asking (politely of course) often changed the outcome (especially around rooms etc).

Someone on this forum suggested asking for a nicu tour and whilst that wasn't possible what was possible was having someone from nicu come and speak with us about what to expect. I highly recommend this if it looks like bub is likely to be delivered early. You can talk to them about their policies re rooming and breasy feeding.
We as parents were allowed to come and go as we pleased although there where restrictions on visitors. The hospital also had cameras over the cribs so we could log on from home and watch her when we weren't there.

Sorry this post is a bit all over the place but if you are in the ACT please feel free to message me for any details.

#18 FretfulMum

Posted 16 September 2016 - 09:23 PM

I understand it is usual practice to not allow parents to stay overnight in the hospital itself if their child is in NICU/SCN. I have had two experiences of this, as a mother of a premmie who was in hospital for 10wks & also as a health professional who works in a hospital.

My son was in NICU for 5wks in a large public hospital (about 80 bed NICU/SCN), as a private patient. It was crowded. There was barely enough room for parents to sit at the end of the incubator let alone stay the night. There were reclining chairs but usually not enough for every mother. We were however, allowed to come/go at any time. On two occasions we were at the hospital through the night when serious complications arose with our DS. Although it was heartbreaking to leave my son, I was thankful for a break from the NICU when I finally got home after a long day there.

Many mothers who lived out of town rented accommodation nearby the hospital. Maybe this could be an option for you if the situation arises again. There was a social worker available to help arrange/coordinate this.

Once DS was ready for SCN, we moved him to a small private hospital nearer to our home. This was lovely for us as it was much smaller and allowed us more (physical!) space with our son. I spent many long days there establishing breastfeeding (7am-11pm) but never stayed the night. There were several lactation consultants available to assist with establishing breastfeeding. Despite all the support I still exclusively pumped and bottle fed EBM to DS for 5mths until he finally got the hang of breastfeeding. Breastfeeding is difficult and i think especially so for mothers of premmie babies no matter how much support is provided.

I don't think it would serve you well to refuse to leave the hospital if your baby was in NICU/SCN again (if this is thE Hospitals rule). It's important to understand there are reasons behind this ruling (space/liability/costs in an already stretched system). Additionally it won't help build rapport/trust with the nursing staff. I would see if there is a SW/nurse coordinator who can assist with nearby temporary alternative accommodation.

I'm sorry you are feeling such anxiety over this and that you felt unsupported with establishing breastfeeding. If it's worrying you too much speak to your Ob/GP/psychologist.

Something that I found helped me through the difficult NICU/SCN roller coaster is reminding myself that there were children and families that were in worse situations than myself. There were babies who were desperately unwell, who had been there for months with no end in sight. There were mothers who were living in a different city to the rest of their family, to be by the side of their sick child. There were siblings left at home without seeing their mothers for weeks. There were fathers who had to work far away to support their family. There were families who couldn't afford the travel/living costs to be with their child. I took my hat off to these families and when we were having a bad day, just looking around the NICU room helped me put our situation into perspective.

#19 Feral Snow

Posted 16 September 2016 - 10:02 PM

No experience with NICU, but my son was in SCU for a week and the hospital let me stay as a "boarder" (as opposed to a patient).  This wasn't offered off the bat, it was offered when I asked if I could stay at the hospital.  I was told if the bed I was occupying was needed I would have to leave.  It was an 8 bed room with two of us boarding and six empty beds, so I knew that was unlikely to happen.

#20 Manicmum

Posted 16 September 2016 - 10:19 PM

I managed to stay in a ward that wasn't serviced too. After grovelling to the social worker.

#21 bubba boo

Posted 16 September 2016 - 10:23 PM

My second ds had a couple of nicu/scn stays. I was determined to stay with him as much as possible (demand breastfeeding was one of my reasons). I found that parking myself on the chair beside him and making it clear that I was staying helped staff to find me a bed, for the times when I was too exhausted to be by his side. I didn't encounter any opposition and only politely said I was staying with my son. Obviously I was prepared to step away if necessary e.g. More space needed for medical interventions but found the few times I did he got more distressed and they called me back. However my son's stays were short and his medical needs weren't too intensive.

#22 Caribou

Posted 17 September 2016 - 07:55 AM

Thanks for the feedback everyone. The hospital has about 10 NICU/SCN cots. It's private and small.

I will definitely be chatting to my OB and the hospital about this, I am working on the premise it won't happen again, but I also need to prepare myself for the case if it does happen and I do end up in the same situation as I did with DD.

Thanks everyone.

#23 lucky 2

Posted 17 September 2016 - 01:36 PM

Quote

Additionally it won't help build rapport/trust with the nursing staff.  
Please don't worry about this OP, the staff are there to offer care that cant be provided at home but baby and family should be at the centre of care in the NICU.
It would be very poor culture and antiquated thinking in the NICU if the nursing staff felt "ownership" of your baby and that a parent should to be compliant and distanced.

#24 MooGuru

Posted 17 September 2016 - 02:21 PM

Deleted as picu and nicu may be differe t

Edited by MooGuru, 17 September 2016 - 02:22 PM.


#25 .Jerry.

Posted 17 September 2016 - 02:26 PM

There were no restrictions that I know of at the NICU that my daughter was in, however I went home every night.  I couldn't sustain staying longer as she was in for 12 weeks and I had to have some normality.  I also knew she was in good hands and there was nothing at all I could do really there.
The NICU was crowded so no armchair beside each crib, however it is new now so hopefully better.

However when DD was in SCN I had support to start breastfeeding.  I requested a lactation consultant and she was great.  Did signs up for the baby's cot, explaining my requests re feeds (i.e. no bottles, only NG tube overnight) and I had support to start breast feeding.

I used to be at hospital early in morning till dinner time.  I was bored and exhausted by then.  Still had to get up all night to express.  Luckily though I was only 15 mins away from home.




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