May 24, 2026 • 21 mins
Pregnancy is already a time of mixed emotions, nerves, and trepidation, but what happens when your baby comes dangerously early? That's what happened for Abby Rawls and her baby Austin. Austin was born at just 25 weeks, and what followed was a harrowing 170 days in Christchurch's NICU.
In the episode Toni and Abby chat about Abby's experience practically living in the NICU for almost 6 months, the pain, fear, and surprise of having a baby born so early.
This episode is brought to you by the Māia Health Foundation. Tiny hands need big hearts. Donate now at maiahealth.org.nz
See omnystudio.com/listener for privacy information.
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Speaker 1 (00:00):
This episode is brought to you by the Maya Health Foundation.
Join them in supporting the redevelopment of Canterbury's NIKU. Donate
now at Maya Health dot org dot nz.
Speaker 2 (00:11):
We Need to Talk, Tony Street's Lifestyle and Wellness podcast.
Speaker 1 (00:18):
Welcome to WENI to talk. It's great to have you
with us. Pregnancy can be such a mixture of emotions,
can't it. Excitement, nerves, trepidation, and the forty weeks can
feel pretty long. I remember that feeling like it was
yesterday and my daughter is now eleven. But what happens
when your baby decides to come early, dangerously early? That's
what happened to Abbie Rules. Her baby Austin, was born
(00:40):
weighing just over five hundred and three grams at twenty
five weeks, and she was told he was quote borderlines survivable.
What followed was one hundred and seventy days in Christ
Churches NIKU with multiple surgeries, infections, and heart issues. Austin
is now a happy seventeen month old toddler, but has
been a harrowing start to his young life. Abby and
(01:02):
her husband JB say they received exceptional medical care while
in NIKO, but the environment itself at times added to
their stress. It's about to get a sixteen million dollar upgrade.
The Maya Health Foundation is contributing two point one million
dollars of that and is focused on making the space
more supportive for families with farno rooms, overnight spaces, comfortable recliners,
(01:23):
and breastfeeding chairs. To find out more and to donate,
you can head to Maya Health dot org dot nz.
I'm going to start abby by asking those things I've
just mentioned, those extra spaces and rooms, would that have
made a difference to your journey?
Speaker 3 (01:38):
Oh? Absolutely. When I first got into the Niku from
the maternity ward, I just couldn't believe how hot and
overwhelming it was, with the noise, the lack of light,
the constant machinery going, the beping, the alarming and although
we did have a space, it was very tired, very old,
(01:59):
and had no windows so there was no natural light
at all, and it was very crowded at times. So
if you wanted a space to just have a break
and recharge from what you were going through, it was
really difficult to find that. You can't always just stand
in a hallway when people are coming and going when
you need to gather yourself and sort of get yourself
(02:20):
together if you've had a hard moment.
Speaker 1 (02:22):
Let's go back to the beginning. So when did you
know that Austin was going to come early? Because twenty
five weeks it's right on that casp, isn't it.
Speaker 3 (02:29):
Yes, So I will always be grateful to my midwife
because at twenty weeks she asked for Doppler readings at
my ultrasound and that spread a twenty four weeks scan
where it was discovered that Austin hadn't grown it all
in about four or five weeks. So we went into
fetal maternity. We were given the hard word that Austin
was going to come early and that the most time
(02:51):
we would get would be two more weeks pregnant. We
got one week before he needed to be delivered, so
I had asymptomatic prayer clamps.
Speaker 1 (03:00):
Here.
Speaker 3 (03:01):
I had no symptoms, no idea that anything was wrong,
apart from the fact that I wasn't really very big
and Austin had stopped growing and he was losing his
I guess the blood flow through to the percenter.
Speaker 1 (03:14):
When he was born, you were told he was borderline survivable.
That must have been a horrible thing for you to
hear as a mum.
Speaker 3 (03:22):
Yeah. I think it's like fifty percent of children born
at that twenty four to twenty five week mark actually
pull through. And they told us that the first forty
eight hours is off on a honeymoon period. We certainly
had that with Austin. He didn't have any what they
call events, He didn't have major d sets, his breathing
was standard, everything looked good. And then he was born
(03:44):
on a Friday, and then on the Sunday his PDA
ruptured or hemorrhaged it, I think, and he was very
very ill. They prepared us to lose him that night,
so they invited JB to stay overnight on the board
and we just waited for them to come through and say, look,
you've got to come and say goodbye. But that didn't happen.
(04:06):
They didn't come, and then about two weeks later he
needed emergency bow surgery and they said, look, he's quite sick.
He's got to have this surgery, but we think it's okay.
He's not showing really really severe symptoms of infection. And
then afterwards they set us down and they said, we're
really sorry. It's far worse than we thought. He has
(04:29):
what left of his small intestine is the bare minimum
of what we would consider survivable. So yeah, we don't
know his prognosis. It's wait and see. And that was
gutting because we went in very nervous but very hopeful,
and then afterwards I think we were really shocked and
also just heartbroken because again we were prepared to lose
(04:51):
this baby overnight.
Speaker 4 (04:53):
But he was a fighter.
Speaker 1 (04:55):
And I'm looking at the days one hundred and seventy
days in NICKEU and you were able to take your
baby home.
Speaker 4 (05:03):
That just seems miraculous.
Speaker 3 (05:06):
It does even more so because of his condition. We
were told he would be TPE independent, so that's an
IV nutrition way of I guess eating and surviving. And
they said, look, you'll probably have to go to pediatrics
for several months while we try and wean him, but
that might not be possible due to his small length
of small intestine. So even though we knew we would
(05:28):
eventually leave the NIKU, the plan was for me to
then move into the pediatric ward with him for several months,
and then one day they said, oh, we're going to
start talking about discharge, and we naively thought they meant
discharge to pediatrics, but instead they said, look, how would
you like to go home on Easter Monday. So that
flowed us. Yeah, that really flowed us in a really
(05:50):
really good way.
Speaker 1 (05:52):
Yeah, but that time in Nicku must have been tough.
One hundred and seventy days. What did that look like
for your family?
Speaker 3 (05:58):
Yeah, so he was born on the first in November.
That meant an immediate stop work for me. The people
at my workplace just carried on. They were amazing, and
my husband was a teacher at the time, and so
he had that long period of school holidays where he
was able to come in with me every day, and
then going back to work for him was really difficult
(06:20):
in the end of January because he had to go
and do his job. I went into the Niku and
then at about three three point thirty four o'clock head
driven from Rangiura. We'd sort of pass each other in
the corridor and I'd head home because we've got older
teenagers at home too, so we essentially abandoned them to
(06:41):
themselves for the summer. But we were really conscious that
there were still celebrations in their life that needed to happen.
There was birthdays, there was Christmas, they still wanted to
do things, they still needed us, And it's really hard
if you're torn between children at home and your baby
and the.
Speaker 1 (06:58):
Nikoo and not going to a home environment. Are you
As you said earlier, the clinical care was great, but
what sort of environment were you in?
Speaker 3 (07:08):
So Austin spent one hundred and thirty something days in
room one. So room one is the highest intensive care.
Essentially most of the time it's one to one nursing
support because he was that I guess sick at times,
and you have a little space. Often the babies are
moved spaces, so they try and tell you overnight. They
(07:30):
might give you a call and say, look, we're having
to move your baby. He's now going to be in
the far corner. But that's not always possible. We were
very fortunate in that we had the same space for
those one hundred and forty days. But in saying so
people come and go, they are bringing in new babies.
There's emergency situations happening all around you, and so while
(07:50):
you're trying to be there and calm and collected for
your own child, you can't help but night us what's
going on, and at times it can be quite distracting.
It can be really noisy. The cleaners come in. We're
very grateful for the cleaners, but it is very, very
strange to sort of have to lift your feet as
they mop the floor underneath you while you're holding your
(08:12):
baby who's on an incubator. You know, he's on a ventilator,
and they do their very best. We were always offered privacy,
we were offered screens to try and protect our own privacy,
but there weren't always enough, and we would go in
and we'd joke about the chair hunt, so will there
be a chair there today? And we would always go
(08:34):
in with the intention of holding Austin for sort of
two or three hours if possible, if he was well
enough to come out of the incubator, and that involved
finding a good chair that was supportive enough for us
to do that, and that wasn't always the case, so
the nurses would go on a hunt into the other
rooms to see if they could borrow one from someone else. Yeah,
it was tough at times. We've got the sense that
(08:57):
they didn't want us to know guess how tight things
were sometimes.
Speaker 4 (09:03):
So they tried to shield you from there.
Speaker 1 (09:04):
And obviously things are tight, and hopefully with the more
money that my health can get, there will be things
like cheers more readily available. Do you if you had
to sort of list in order of importance, what would
have made a difference to your experience and which would
have taken stress away? What would some of those things
have been? I guess cheers being one number one.
Speaker 3 (09:28):
Yeah, somewhere comfortable for you to sit while you were
at your bedside with your baby, and they always prioritized
the person who was holding the baby, as they should.
Often the other person got a standing stool or a
little cheer to sit on at the foot of the
other one. I think for us, because we were spending
(09:48):
long days there and that included eating, you know, lunch,
or sometimes if we were there late at night, it
included dinner, somewhere to go that was a little bit
more I guess homely and a little bit more relaxing
for you to be abut to enjoy something simple was
having a meal. At one point, one of the parent
rooms lost the microwave, so it meant that if you
(10:12):
needed to bring lunch and you were using the outside
parent room, you couldn't really because there was no way
to heat your food, and while they sorted that as
fast as they could, it meant that there was sort
of a three or four week delay. And you know,
we spoke to the nurse who was in charge of
I guess securing items, and we did definitely get the
sense that the funding was always a challenge. Was it
(10:35):
a priority to have a microwave in the parent room
for us? It was yes. For the NIKU staff and
the hospital possibly not. So we were very grateful for
everything we had, and just recently we stayed in pediatrics
with Austin Surgery and the whole parent kitchenette is donated
and installed by the Meyer Foundation. So to wander down
(10:57):
and have a cup of tea after dinner, I don't
know if you drink tea Tony.
Speaker 4 (11:01):
But oh I do, Oh I do.
Speaker 3 (11:03):
It's nothing very comforting to many people. And you know,
without a facility like that, you're just in your hospital room,
possibly with your glass of water. So it's really great
to be able to go down and have those things
when you are in hospital away from home.
Speaker 1 (11:20):
Yes, there's not much that can't be fixed with a
good strong cup of tea. I agree with that, and
carving nature of a tea.
Speaker 2 (11:28):
You're listening till we need to talk with Tony Street.
Speaker 1 (11:32):
Talk me through what your state was like each time
you sort of had to come into the NIKO, because
it must be pretty frustrating the whole thing as a
new mum, first of all, not to be able to
take your baby home, to watch your baby getting all
of these tests and procedures constantly, so you're not exactly
in the most carb state even though you're trying to
(11:53):
be right.
Speaker 3 (11:55):
Yes, that's exactly right. And if any major things happened,
they would sometimes call us overnight and let us know.
But sometimes we would turn up and Austin wouldn't be well,
and that could be quite recent. So we live in
North Canterbury. It's sort of a forty five fifty minute drive,
but by the time you get your parking, you walk
to the hospital and we'd arrive some mornings and we'd
(12:16):
have left him the day before he was quite stable,
and we'd arrive the next morning and it was a
little bit crisis station. His stats had dropped. They detected
an infection. They were trying to find out what was
wrong with him and essentially stabilize him. So we'd turned
up ready to sit down hold him for a few hours,
and instead we had to watch them really work hard
to keep them within those stable limits. And I remember
(12:39):
thinking at one time, we're never going to take this
baby home. It's definitely like this. They tell you it's
going to be a rollercoaster, and you definitely do have
good days, but the bad days are really really difficult,
and you sort of have to, I guess, guard your
heart a little bit, and you turn up each day
hoping for the best, prepare for the worst, and months
(13:02):
and months of I guess preparing for the worst does
something to you, you sort of. I don't know. I
found it quite hard in the beginning to be really
attached because I didn't want to form this really strong
bond with someone.
Speaker 4 (13:16):
That I might lose. I understand that. Yeah.
Speaker 3 (13:20):
And then there was a time where he had been
really ill and he had had this unexpected event in
theater and it was totally unprecedented, and he came back
very very ill with a lung drain and back on ventilation,
and I remember thinking, you know, we're not going to
be able to take him home. And then he you know,
two weeks later, he rallied. He had a successful thea
(13:42):
to visit and they said, you know, now we're going
to start. We're going to move you into room two.
And we thought, wow, we never thought that day would come.
As you progress through the rooms, it kind of means
your baby is getting stronger and healthier and closer to
getting home. And I went out and I bought him
again for the first time in about one hundred and
forty days, because I thought, actually, he's going to come home, so,
(14:05):
oh my.
Speaker 4 (14:05):
Gosh, that's so nice. I venture there was a lovely moment.
Speaker 1 (14:08):
I just want to touch on that sort of creature
comfort thing again. How we spoke about the cup of
tea and maybe it's a nice chair because I spent
a bit of time in hospital with an autoimmune condition
when my baby was only six weeks old, and I
remember thinking, anyone that had a really nice word to
give me, or you know, if my mum brought in
a nice pair of socks, or if there was a
(14:30):
nice chair for my husband to sit and hold my
baby while I was sick in the hospital bed. Those
little things they actually make a big difference when you're
in a stressful environment, do you agree, absolutely?
Speaker 3 (14:41):
And when we were there, because the knicker was so
over there's too many babies. At times they cut the
visiting and so it meant that anyone who came to
visit you, so grandparents, siblings, we had to do all
the visiting outside the nick who doors in the other
parent room with all of the other pair so who
were also there to visit their loved ones but couldn't
(15:02):
go in the rooms. And so to be able to
have somewhere where you can gather as a family, and
even if it's not at the bedside, because that changes
from time to time, and the NICCO keeps those connections alive.
And it also means it's just normal, isn't it. Come
in this is my lounge for one hundred and seventy days.
(15:22):
I'll make you a cup of tea because I know
where they keep that. It's a polystyrene cup and a
wooden spoon. But that's okay. We do what we do,
and I think it just makes your day a little
bit easier when everything is not so hard and so
I guess dark and so frustrating, and you know that
(15:44):
actually down the hallway is somewhere that is perhaps bright
and a bit quiet, and that you could perhaps do
you know, read something or call someone and tell them
some news, and you're out of that constant I guess
that vigilant area, that space where the alarms are going
(16:07):
and the people are coming and someone's checking. There's injections
and tubes and wires and machines.
Speaker 4 (16:14):
Yes, it's like living on your nose, is it?
Speaker 2 (16:17):
Yeah?
Speaker 4 (16:17):
No, it does, It absolutely does.
Speaker 1 (16:19):
And I guess the other side of that too, is
you don't know how important those things are unless you
actually live it. Like would you have had any idea
of what you were in for prior to having Austin.
Speaker 2 (16:34):
No.
Speaker 3 (16:34):
I had visited a friend in the nikoo, and when
I was there, a few things came back. But you know,
you visit and you're there for maybe an hour. You're
not there for eight to twelve.
Speaker 4 (16:46):
Hours of the day.
Speaker 3 (16:47):
You're not wandering down the hallway and going where am
I going to sit? Where am I going to escape to?
What can I do to have a break? And when
you're living it every day, and it does become your home,
a strange home, but it is your home for the
time that you're there because that's where your baby is.
(17:09):
It's kind of where your heart is. And yeah, you
don't really have any idea. I guess the impact of
the whole environment day and day out, it can be
very very stressful. There's a part of the morning and
they do it for privacy, so when they're talking about
your baby, they want to protect your privacy and the
(17:31):
privacy of other people around you. But it means that
the doctors come into a room and for about forty
five minutes you have to sit with these headphones on
and they're actually provided by Meyer And it's just one
way instead of being asked to leave, you can still
stay with your baby while everything else is happening on
(17:51):
around you. And I think that's really important and it's
just something else I guess that they have provided for
peers and to protect the privacy aspects of what's happening.
Speaker 1 (18:04):
Yeah, and all of these things that are provided by Maya,
I would have never have known that. I would have
assumed that that was part of would come past and
parcel of you being part of the hospital. So to
hear that it's being funded by Maya Health was quite
a surprise to me.
Speaker 3 (18:19):
Yes, And when I was in pediatrics two weeks ago,
it was a surprise to me also to see the
sweet sign that said parent kitchenette provided by the Maya Foundation.
I thought, wasn't that great? Each of our pediatrics wards
have got to you know, you get toast in the
morning and you have a hot tea and you've got
a microwave, And I just thought it was the hospital,
but it's not. And there is a quiet space in
(18:42):
the Peeds area as well as the NIKU and all
of the furniture that's there is provided by Maya. The
white ware is provided by Meyer, and the replacement microwave
has provided.
Speaker 1 (18:52):
I couldn't do without my microwave for a week, I
tell you. I tell you that would be really tough.
I think once you understand that it's coming from somewhere else,
it's coming from MYA Health, I think people will be
alluded to that and think, oh goodness, what can I
do to help them? So I'm going to give you
the information now if you'd like to donate, Maya Health
dot org dot m Z is where you go. So
(19:13):
your donation will help fund enhancements that improve the comfort,
the privacy, and the emotional well being for families. As
Abby has pointed out, and often these families are facing
not just short but long and very stressful Nicko journeys.
So that address again is Maya Health dot org dot zed. Finally, Abby,
I just want to get an update on where Austin's at.
Speaker 4 (19:33):
How's he doing.
Speaker 3 (19:34):
Oh he's really great, Tony. He like I said, he
barely knows his head surgery two weeks ago. He's found
his well, he's found his legs in the crawling sense,
I guess you'd say. And though he took quite a
while to get there, boy is he fast. So if
we open the fridge, that's his latest fascination, he zooms in.
He's got two older siblings. He knows their bedrooms and
(19:55):
so when the hallway door is open, he's banging on
those doors saying, let me in. No, he's a very happy,
calm little boy, and you wouldn't know really that he
had had such a rough start to life. We're just
really excited to see what his potential will be and
(20:16):
how he'll do things in his own time. But yeah,
what he's going to grow up to look like, the
types of things that he's going to enjoy, what his
interests are going to be. And he's been such a
great addition to our family.
Speaker 1 (20:32):
Well, thank you so much, Abby for sharing your story
and also sharing what my Health does and how we
can help them provide a better level of care for
people that in your situation, because I think every mother
and father that goes into to have a new baby,
you know, this is not the dream start, Nick, Who's
not the dream start, but it's the reality for so.
Speaker 4 (20:54):
Many Kiwi families.
Speaker 1 (20:56):
And just to have those extras that reduce any level
of rice, I think is so key, So thank you
so much, and then it I'd like to donate to
my Health dot.
Speaker 2 (21:07):
Gram and we need to talk with Tony Street or email.
We need to talk at cost online, dot co, dot
inz
This episode is brought to you by the Maya Health Foundation.
Join them in supporting the redevelopment of Canterbury's NIKU. Donate
now at Maya Health dot org dot nz.
Speaker 2 (00:11):
We Need to Talk, Tony Street's Lifestyle and Wellness podcast.
Speaker 1 (00:18):
Welcome to WENI to talk. It's great to have you
with us. Pregnancy can be such a mixture of emotions,
can't it. Excitement, nerves, trepidation, and the forty weeks can
feel pretty long. I remember that feeling like it was
yesterday and my daughter is now eleven. But what happens
when your baby decides to come early, dangerously early? That's
what happened to Abbie Rules. Her baby Austin, was born
(00:40):
weighing just over five hundred and three grams at twenty
five weeks, and she was told he was quote borderlines survivable.
What followed was one hundred and seventy days in Christ
Churches NIKU with multiple surgeries, infections, and heart issues. Austin
is now a happy seventeen month old toddler, but has
been a harrowing start to his young life. Abby and
(01:02):
her husband JB say they received exceptional medical care while
in NIKO, but the environment itself at times added to
their stress. It's about to get a sixteen million dollar upgrade.
The Maya Health Foundation is contributing two point one million
dollars of that and is focused on making the space
more supportive for families with farno rooms, overnight spaces, comfortable recliners,
(01:23):
and breastfeeding chairs. To find out more and to donate,
you can head to Maya Health dot org dot nz.
I'm going to start abby by asking those things I've
just mentioned, those extra spaces and rooms, would that have
made a difference to your journey?
Speaker 3 (01:38):
Oh? Absolutely. When I first got into the Niku from
the maternity ward, I just couldn't believe how hot and
overwhelming it was, with the noise, the lack of light,
the constant machinery going, the beping, the alarming and although
we did have a space, it was very tired, very old,
(01:59):
and had no windows so there was no natural light
at all, and it was very crowded at times. So
if you wanted a space to just have a break
and recharge from what you were going through, it was
really difficult to find that. You can't always just stand
in a hallway when people are coming and going when
you need to gather yourself and sort of get yourself
(02:20):
together if you've had a hard moment.
Speaker 1 (02:22):
Let's go back to the beginning. So when did you
know that Austin was going to come early? Because twenty
five weeks it's right on that casp, isn't it.
Speaker 3 (02:29):
Yes, So I will always be grateful to my midwife
because at twenty weeks she asked for Doppler readings at
my ultrasound and that spread a twenty four weeks scan
where it was discovered that Austin hadn't grown it all
in about four or five weeks. So we went into
fetal maternity. We were given the hard word that Austin
was going to come early and that the most time
(02:51):
we would get would be two more weeks pregnant. We
got one week before he needed to be delivered, so
I had asymptomatic prayer clamps.
Speaker 1 (03:00):
Here.
Speaker 3 (03:01):
I had no symptoms, no idea that anything was wrong,
apart from the fact that I wasn't really very big
and Austin had stopped growing and he was losing his
I guess the blood flow through to the percenter.
Speaker 1 (03:14):
When he was born, you were told he was borderline survivable.
That must have been a horrible thing for you to
hear as a mum.
Speaker 3 (03:22):
Yeah. I think it's like fifty percent of children born
at that twenty four to twenty five week mark actually
pull through. And they told us that the first forty
eight hours is off on a honeymoon period. We certainly
had that with Austin. He didn't have any what they
call events, He didn't have major d sets, his breathing
was standard, everything looked good. And then he was born
(03:44):
on a Friday, and then on the Sunday his PDA
ruptured or hemorrhaged it, I think, and he was very
very ill. They prepared us to lose him that night,
so they invited JB to stay overnight on the board
and we just waited for them to come through and say, look,
you've got to come and say goodbye. But that didn't happen.
(04:06):
They didn't come, and then about two weeks later he
needed emergency bow surgery and they said, look, he's quite sick.
He's got to have this surgery, but we think it's okay.
He's not showing really really severe symptoms of infection. And
then afterwards they set us down and they said, we're
really sorry. It's far worse than we thought. He has
(04:29):
what left of his small intestine is the bare minimum
of what we would consider survivable. So yeah, we don't
know his prognosis. It's wait and see. And that was
gutting because we went in very nervous but very hopeful,
and then afterwards I think we were really shocked and
also just heartbroken because again we were prepared to lose
(04:51):
this baby overnight.
Speaker 4 (04:53):
But he was a fighter.
Speaker 1 (04:55):
And I'm looking at the days one hundred and seventy
days in NICKEU and you were able to take your
baby home.
Speaker 4 (05:03):
That just seems miraculous.
Speaker 3 (05:06):
It does even more so because of his condition. We
were told he would be TPE independent, so that's an
IV nutrition way of I guess eating and surviving. And
they said, look, you'll probably have to go to pediatrics
for several months while we try and wean him, but
that might not be possible due to his small length
of small intestine. So even though we knew we would
(05:28):
eventually leave the NIKU, the plan was for me to
then move into the pediatric ward with him for several months,
and then one day they said, oh, we're going to
start talking about discharge, and we naively thought they meant
discharge to pediatrics, but instead they said, look, how would
you like to go home on Easter Monday. So that
flowed us. Yeah, that really flowed us in a really
(05:50):
really good way.
Speaker 1 (05:52):
Yeah, but that time in Nicku must have been tough.
One hundred and seventy days. What did that look like
for your family?
Speaker 3 (05:58):
Yeah, so he was born on the first in November.
That meant an immediate stop work for me. The people
at my workplace just carried on. They were amazing, and
my husband was a teacher at the time, and so
he had that long period of school holidays where he
was able to come in with me every day, and
then going back to work for him was really difficult
(06:20):
in the end of January because he had to go
and do his job. I went into the Niku and
then at about three three point thirty four o'clock head
driven from Rangiura. We'd sort of pass each other in
the corridor and I'd head home because we've got older
teenagers at home too, so we essentially abandoned them to
(06:41):
themselves for the summer. But we were really conscious that
there were still celebrations in their life that needed to happen.
There was birthdays, there was Christmas, they still wanted to
do things, they still needed us, And it's really hard
if you're torn between children at home and your baby
and the.
Speaker 1 (06:58):
Nikoo and not going to a home environment. Are you
As you said earlier, the clinical care was great, but
what sort of environment were you in?
Speaker 3 (07:08):
So Austin spent one hundred and thirty something days in
room one. So room one is the highest intensive care.
Essentially most of the time it's one to one nursing
support because he was that I guess sick at times,
and you have a little space. Often the babies are
moved spaces, so they try and tell you overnight. They
(07:30):
might give you a call and say, look, we're having
to move your baby. He's now going to be in
the far corner. But that's not always possible. We were
very fortunate in that we had the same space for
those one hundred and forty days. But in saying so
people come and go, they are bringing in new babies.
There's emergency situations happening all around you, and so while
(07:50):
you're trying to be there and calm and collected for
your own child, you can't help but night us what's
going on, and at times it can be quite distracting.
It can be really noisy. The cleaners come in. We're
very grateful for the cleaners, but it is very, very
strange to sort of have to lift your feet as
they mop the floor underneath you while you're holding your
(08:12):
baby who's on an incubator. You know, he's on a ventilator,
and they do their very best. We were always offered privacy,
we were offered screens to try and protect our own privacy,
but there weren't always enough, and we would go in
and we'd joke about the chair hunt, so will there
be a chair there today? And we would always go
(08:34):
in with the intention of holding Austin for sort of
two or three hours if possible, if he was well
enough to come out of the incubator, and that involved
finding a good chair that was supportive enough for us
to do that, and that wasn't always the case, so
the nurses would go on a hunt into the other
rooms to see if they could borrow one from someone else. Yeah,
it was tough at times. We've got the sense that
(08:57):
they didn't want us to know guess how tight things
were sometimes.
Speaker 4 (09:03):
So they tried to shield you from there.
Speaker 1 (09:04):
And obviously things are tight, and hopefully with the more
money that my health can get, there will be things
like cheers more readily available. Do you if you had
to sort of list in order of importance, what would
have made a difference to your experience and which would
have taken stress away? What would some of those things
have been? I guess cheers being one number one.
Speaker 3 (09:28):
Yeah, somewhere comfortable for you to sit while you were
at your bedside with your baby, and they always prioritized
the person who was holding the baby, as they should.
Often the other person got a standing stool or a
little cheer to sit on at the foot of the
other one. I think for us, because we were spending
(09:48):
long days there and that included eating, you know, lunch,
or sometimes if we were there late at night, it
included dinner, somewhere to go that was a little bit
more I guess homely and a little bit more relaxing
for you to be abut to enjoy something simple was
having a meal. At one point, one of the parent
rooms lost the microwave, so it meant that if you
(10:12):
needed to bring lunch and you were using the outside
parent room, you couldn't really because there was no way
to heat your food, and while they sorted that as
fast as they could, it meant that there was sort
of a three or four week delay. And you know,
we spoke to the nurse who was in charge of
I guess securing items, and we did definitely get the
sense that the funding was always a challenge. Was it
(10:35):
a priority to have a microwave in the parent room
for us? It was yes. For the NIKU staff and
the hospital possibly not. So we were very grateful for
everything we had, and just recently we stayed in pediatrics
with Austin Surgery and the whole parent kitchenette is donated
and installed by the Meyer Foundation. So to wander down
(10:57):
and have a cup of tea after dinner, I don't
know if you drink tea Tony.
Speaker 4 (11:01):
But oh I do, Oh I do.
Speaker 3 (11:03):
It's nothing very comforting to many people. And you know,
without a facility like that, you're just in your hospital room,
possibly with your glass of water. So it's really great
to be able to go down and have those things
when you are in hospital away from home.
Speaker 1 (11:20):
Yes, there's not much that can't be fixed with a
good strong cup of tea. I agree with that, and
carving nature of a tea.
Speaker 2 (11:28):
You're listening till we need to talk with Tony Street.
Speaker 1 (11:32):
Talk me through what your state was like each time
you sort of had to come into the NIKO, because
it must be pretty frustrating the whole thing as a
new mum, first of all, not to be able to
take your baby home, to watch your baby getting all
of these tests and procedures constantly, so you're not exactly
in the most carb state even though you're trying to
(11:53):
be right.
Speaker 3 (11:55):
Yes, that's exactly right. And if any major things happened,
they would sometimes call us overnight and let us know.
But sometimes we would turn up and Austin wouldn't be well,
and that could be quite recent. So we live in
North Canterbury. It's sort of a forty five fifty minute drive,
but by the time you get your parking, you walk
to the hospital and we'd arrive some mornings and we'd
(12:16):
have left him the day before he was quite stable,
and we'd arrive the next morning and it was a
little bit crisis station. His stats had dropped. They detected
an infection. They were trying to find out what was
wrong with him and essentially stabilize him. So we'd turned
up ready to sit down hold him for a few hours,
and instead we had to watch them really work hard
to keep them within those stable limits. And I remember
(12:39):
thinking at one time, we're never going to take this
baby home. It's definitely like this. They tell you it's
going to be a rollercoaster, and you definitely do have
good days, but the bad days are really really difficult,
and you sort of have to, I guess, guard your
heart a little bit, and you turn up each day
hoping for the best, prepare for the worst, and months
(13:02):
and months of I guess preparing for the worst does
something to you, you sort of. I don't know. I
found it quite hard in the beginning to be really
attached because I didn't want to form this really strong
bond with someone.
Speaker 4 (13:16):
That I might lose. I understand that. Yeah.
Speaker 3 (13:20):
And then there was a time where he had been
really ill and he had had this unexpected event in
theater and it was totally unprecedented, and he came back
very very ill with a lung drain and back on ventilation,
and I remember thinking, you know, we're not going to
be able to take him home. And then he you know,
two weeks later, he rallied. He had a successful thea
(13:42):
to visit and they said, you know, now we're going
to start. We're going to move you into room two.
And we thought, wow, we never thought that day would come.
As you progress through the rooms, it kind of means
your baby is getting stronger and healthier and closer to
getting home. And I went out and I bought him
again for the first time in about one hundred and
forty days, because I thought, actually, he's going to come home, so,
(14:05):
oh my.
Speaker 4 (14:05):
Gosh, that's so nice. I venture there was a lovely moment.
Speaker 1 (14:08):
I just want to touch on that sort of creature
comfort thing again. How we spoke about the cup of
tea and maybe it's a nice chair because I spent
a bit of time in hospital with an autoimmune condition
when my baby was only six weeks old, and I
remember thinking, anyone that had a really nice word to
give me, or you know, if my mum brought in
a nice pair of socks, or if there was a
(14:30):
nice chair for my husband to sit and hold my
baby while I was sick in the hospital bed. Those
little things they actually make a big difference when you're
in a stressful environment, do you agree, absolutely?
Speaker 3 (14:41):
And when we were there, because the knicker was so
over there's too many babies. At times they cut the
visiting and so it meant that anyone who came to
visit you, so grandparents, siblings, we had to do all
the visiting outside the nick who doors in the other
parent room with all of the other pair so who
were also there to visit their loved ones but couldn't
(15:02):
go in the rooms. And so to be able to
have somewhere where you can gather as a family, and
even if it's not at the bedside, because that changes
from time to time, and the NICCO keeps those connections alive.
And it also means it's just normal, isn't it. Come
in this is my lounge for one hundred and seventy days.
(15:22):
I'll make you a cup of tea because I know
where they keep that. It's a polystyrene cup and a
wooden spoon. But that's okay. We do what we do,
and I think it just makes your day a little
bit easier when everything is not so hard and so
I guess dark and so frustrating, and you know that
(15:44):
actually down the hallway is somewhere that is perhaps bright
and a bit quiet, and that you could perhaps do
you know, read something or call someone and tell them
some news, and you're out of that constant I guess
that vigilant area, that space where the alarms are going
(16:07):
and the people are coming and someone's checking. There's injections
and tubes and wires and machines.
Speaker 4 (16:14):
Yes, it's like living on your nose, is it?
Speaker 2 (16:17):
Yeah?
Speaker 4 (16:17):
No, it does, It absolutely does.
Speaker 1 (16:19):
And I guess the other side of that too, is
you don't know how important those things are unless you
actually live it. Like would you have had any idea
of what you were in for prior to having Austin.
Speaker 2 (16:34):
No.
Speaker 3 (16:34):
I had visited a friend in the nikoo, and when
I was there, a few things came back. But you know,
you visit and you're there for maybe an hour. You're
not there for eight to twelve.
Speaker 4 (16:46):
Hours of the day.
Speaker 3 (16:47):
You're not wandering down the hallway and going where am
I going to sit? Where am I going to escape to?
What can I do to have a break? And when
you're living it every day, and it does become your home,
a strange home, but it is your home for the
time that you're there because that's where your baby is.
(17:09):
It's kind of where your heart is. And yeah, you
don't really have any idea. I guess the impact of
the whole environment day and day out, it can be
very very stressful. There's a part of the morning and
they do it for privacy, so when they're talking about
your baby, they want to protect your privacy and the
(17:31):
privacy of other people around you. But it means that
the doctors come into a room and for about forty
five minutes you have to sit with these headphones on
and they're actually provided by Meyer And it's just one
way instead of being asked to leave, you can still
stay with your baby while everything else is happening on
(17:51):
around you. And I think that's really important and it's
just something else I guess that they have provided for
peers and to protect the privacy aspects of what's happening.
Speaker 1 (18:04):
Yeah, and all of these things that are provided by Maya,
I would have never have known that. I would have
assumed that that was part of would come past and
parcel of you being part of the hospital. So to
hear that it's being funded by Maya Health was quite
a surprise to me.
Speaker 3 (18:19):
Yes, And when I was in pediatrics two weeks ago,
it was a surprise to me also to see the
sweet sign that said parent kitchenette provided by the Maya Foundation.
I thought, wasn't that great? Each of our pediatrics wards
have got to you know, you get toast in the
morning and you have a hot tea and you've got
a microwave, And I just thought it was the hospital,
but it's not. And there is a quiet space in
(18:42):
the Peeds area as well as the NIKU and all
of the furniture that's there is provided by Maya. The
white ware is provided by Meyer, and the replacement microwave
has provided.
Speaker 1 (18:52):
I couldn't do without my microwave for a week, I
tell you. I tell you that would be really tough.
I think once you understand that it's coming from somewhere else,
it's coming from MYA Health, I think people will be
alluded to that and think, oh goodness, what can I
do to help them? So I'm going to give you
the information now if you'd like to donate, Maya Health
dot org dot m Z is where you go. So
(19:13):
your donation will help fund enhancements that improve the comfort,
the privacy, and the emotional well being for families. As
Abby has pointed out, and often these families are facing
not just short but long and very stressful Nicko journeys.
So that address again is Maya Health dot org dot zed. Finally, Abby,
I just want to get an update on where Austin's at.
Speaker 4 (19:33):
How's he doing.
Speaker 3 (19:34):
Oh he's really great, Tony. He like I said, he
barely knows his head surgery two weeks ago. He's found
his well, he's found his legs in the crawling sense,
I guess you'd say. And though he took quite a
while to get there, boy is he fast. So if
we open the fridge, that's his latest fascination, he zooms in.
He's got two older siblings. He knows their bedrooms and
(19:55):
so when the hallway door is open, he's banging on
those doors saying, let me in. No, he's a very happy,
calm little boy, and you wouldn't know really that he
had had such a rough start to life. We're just
really excited to see what his potential will be and
(20:16):
how he'll do things in his own time. But yeah,
what he's going to grow up to look like, the
types of things that he's going to enjoy, what his
interests are going to be. And he's been such a
great addition to our family.
Speaker 1 (20:32):
Well, thank you so much, Abby for sharing your story
and also sharing what my Health does and how we
can help them provide a better level of care for
people that in your situation, because I think every mother
and father that goes into to have a new baby,
you know, this is not the dream start, Nick, Who's
not the dream start, but it's the reality for so.
Speaker 4 (20:54):
Many Kiwi families.
Speaker 1 (20:56):
And just to have those extras that reduce any level
of rice, I think is so key, So thank you
so much, and then it I'd like to donate to
my Health dot.
Speaker 2 (21:07):
Gram and we need to talk with Tony Street or email.
We need to talk at cost online, dot co, dot
inz
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