I had a really early baby - AMA

whichbearisbest · 2019-06-12T17:49:33+00:00

My daughter was born at 23+3 (and survived) - I love to talk about it so wondered if anyone was interested or had questions?

Anotherdayanotherdollar · 12/06/2019 18:51

Well done, that must have been a very difficult time for you. How long was she in nicu for?

whitetoblerone · 12/06/2019 18:53

This warms my heart. My baby was born at 24 weeks and didn't survive due to depletion of oxygen during labour 😔. Has your baby got any lasting effects from being so premature? We were told there would have been 70% chance of a disability.

Nodramanollama · 12/06/2019 18:57

So happy your baby is doing good. I had a preemie at 31 + 3. How do you feel about everything now? Do you ever think you will have another baby?

Nodramanollama · 12/06/2019 18:58

White im very sorry for your loss.

Original poster

whichbearisbest · 12/06/2019 18:58

Thank you so much for being interested.

@Anotherdayanotherdollar - she was in NICU for 5 months and came out exactly 4 weeks after her due date. Carrying her out the hospital was the weirdest feeling.

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Original poster

whichbearisbest · 12/06/2019 19:03

@whitetoblerone I am so very sorry for your loss. What a huge trauma for you. Did you receive any support after the death?

We were also told that she would certainly have a degree of disability, probably very severe. So far she is doing well, she is very small for her age and wears glasses. She has an extreme reaction to unexpected electronic beeps (eg when the dishwasher finishes its cycle) which we imagine might be related to hearing the monitors bleeping constantly in those early months...?

She's not yet at school age, and I believe that some of the learning / concentration difficulties can sometimes become apparent at that time.

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whichbearisbest · 12/06/2019 19:08

@Nodramanollama congratulations; how is your baby doing now?

I think partly because we have been so fortunate to have a good 'outcome', and partly because the NICU was amazing and we've been so well supported, we look back on that first few months mostly with happy memories. A number of my NICU acquaintances have post traumatic stress difficulties relating to their experiences, or have battled really brutal PND with inadequate support, which has been awful to see.

I am actually pregnant now with #2. There's a lot of additional monitoring which is helping me to feel much more confident than I might have done.

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Nodramanollama · 12/06/2019 19:11

@whitetoblerone i hope you got support from people.

Nodramanollama · 12/06/2019 19:27

@whichbearisbest 5 months in NICU. That must have been very tiring. My DC was in for 5 weeks. It was an rollercoaster of emotions. Hes doing very well so far.

Congratulations! Im so glad everything is going well. This is something I'm quite anxious about. I dont know why my baby came early.

HopelesslydevotedtoGu · 12/06/2019 19:37

Were there any facilities for you to sleep at/ near the hospital for the five months if you wanted?

How did you want friends and family to acknowledge your birth?

Were your workplace willing to offer any extra leave after maternity leave, given that your baby would have still been little when your year of mat leave ended?

How long was it before you could hold your baby? What happened if baby cried and was too young to be picked up?

How was the breastfeeding support in NICU?

Do you mind if I ask.... I thought 24 weeks was the cut off for resuscitating a premature baby and that before that was considered too early to try, obviously medical science must have progressed which is fantastic. Were you consulted prior to the birth about whether you wanted resuscitation or not?

Sorry so many questions! Congratulations on your pregnancy.

whitetoblerone · 12/06/2019 20:28

@Nodramanollama Thank you :)

@whichbearisbest I'm so pleased to hear she is doing well! Do you mind me asking what the cause of her extremely early arrival was?

We were offered support and I spoke to a bereavement midwife which helped. I still have bad days, there's nothing that will ever be harder, but I have a gorgeous 11 month old who helps heal my heart a lot. It's almost 2 years now and I suppose it will never get any easier.

Original poster

whichbearisbest · 12/06/2019 20:29

@HopelesslydevotedtoGu

There were facilities at the hospital for parents to stay, but I wasn't eligible for a place because I lived too close. Friends who did stay found it very stressful as the accommodation was really basic and there were difficult rules. For example food storage facilities were poor so there was nowhere safe to store expressed breastmilk overnight.

I think what I wanted, and what I was so grateful to have, was people to be happy to visit us and meet her, even though that was quite difficult for some of them. For the first few weeks things very much hung in the balance for her, and so I wanted to just enjoy her and enjoy being a mum as much as I could. I had this sense that if / when she died, I'd have the rest of my life to mourn her, so I sort of pushed away the panic / sadness / fear for the first couple of months and I wanted the people around me to allow me to do that.

My workplace were amazing. They were willing to extend my mat leave, but I ended up having to leave as she needed a lot of extra care and was still on oxygen etc., so I couldn't give them a realistic time frame for returning.

How long was it before you could hold your baby? What happened if baby cried and was too young to be picked up?
I held her for the first time 10 days after her birth. She had a ventilator tube down her throat for the first 12 weeks so she couldn't make any sound. By the time that was removed she was big enough for careful cuddles.

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whichbearisbest · 12/06/2019 20:29

How was the breastfeeding support in NICU?
It was brilliant. There was a team of specialist nurses dedicated to feeding support. I could express by the incubator and staff would bring screens round etc for privacy if they were wanted. There was food available whenever I needed it. There was this understanding that breastmilk can literally make the difference between life and death for some preemies (not that we were ever pressured in an unhelpful way with that info) and so mums who wanted to breastfeed were given all the support they could need.

Do you mind if I ask.... I thought 24 weeks was the cut off for resuscitating a premature baby and that before that was considered too early to try, obviously medical science must have progressed which is fantastic. Were you consulted prior to the birth about whether you wanted resuscitation or not?
Yes, I often read this and I believe it's perhaps still the case in a lot of areas / hospitals. We were told that the 'norm' would be to allow a 23 weeker to die, but that if we wanted them to attempt to help her live, they would. For us the big question was whether that would mean she was likely to suffer. The doctors assured us that drugs in NICU mean babies aren't left in pain etc., and so we asked them to try.

Obviously I am so, so beyond grateful that we made that decision. But in truth I don't think the doctors helped us to understand it fully. There were certainly times in NICU where she was in pain, and suffering.

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Original poster

whichbearisbest · 12/06/2019 20:30

How was the breastfeeding support in NICU?
It was brilliant. There was a team of specialist nurses dedicated to feeding support. I could express by the incubator and staff would bring screens round etc for privacy if they were wanted. There was food available whenever I needed it. There was this understanding that breastmilk can literally make the difference between life and death for some preemies (not that we were ever pressured in an unhelpful way with that info) and so mums who wanted to breastfeed were given all the support they could need.

Do you mind if I ask.... I thought 24 weeks
Yes, I often read this and I believe it's perhaps still the case in a lot of areas / hospitals. We were told that the 'norm' would be to allow a 23 weeker to die, but that if we wanted them to attempt to help her live, they would. For us the big question was whether that would mean she was likely to suffer. The doctors assured us that drugs in NICU mean babies aren't left in pain etc., and so we asked them to try.

Obviously I am so, so beyond grateful that we made that decision. But in truth I don't think the doctors helped us to understand it fully. There were certainly times in NICU where she was in pain, and suffering.

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whitetoblerone · 12/06/2019 20:31

@HopelesslydevotedtoGu I know the question wasn't directed at me but we were told 24 weeks was the point where it was viable for a baby to survive. However, they did say that they would resuscitate if we wanted and our baby was 23+5 (which is when I went into labour)

SleepingStandingUp · 12/06/2019 20:37

Glad to hear she's doing so well. 5 months in NICU is hardcore, but obviously worth it to being her home so well. We only did 12 1/2 weeks and it felt like we'd not been home for years!!

How is you DP with it all? We found no one really asked how DH was, no one really offered him support and he was just expected to be strong for us.

SleepingStandingUp · 12/06/2019 20:37

Glad to hear she's doing so well. 5 months in NICU is hardcore, but obviously worth it to being her home so well. We only did 12 1/2 weeks and it felt like we'd not been home for years!!

How is you DP with it all? We found no one really asked how DH was, no one really offered him support and he was just expected to be strong for us.

SleepingStandingUp · 12/06/2019 20:39

Glad to hear she's doing so well. 5 months in NICU is hardcore, but obviously worth it to being her home so well. We only did 12 1/2 weeks and it felt like we'd not been home for years!!

How is you DP with it all? We found no one really asked how DH was, no one really offered him support and he was just expected to be strong for us.

Passthecherrycoke · 12/06/2019 20:39