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Hi. I'm Cassandra Melhuish and this is LoveAndHope.TV
I'm a wife, NICU parent, and author of the book "Love And Hope In The NICU".
Now I've created LoveAndHope.TV where I'm going to talk to NICU parents, past and present,
and ask them the questions that you want to know the answers to.
Their answers will give you inspiring insights and knowledge into the NICU and the feelings
behind their journey in the NICU.
This is LoveAndHope.TV
This episode is sponsored by "Love And Hope In The NICU". The inspirational book written
by a NICU parent for NICU parents.
Today we're talking with Catherine - photographer, blogger and NICU parent. Catherine's NICU
journey was 5 months in the hospital.
So talking about the NICU experience, so what was your first impression of the NICU when
you first walked in?
OK. So I had two NICU experiences. The first was at my son Reuben's birth hospital and
that was a little bit different than I expected for the first few nights for sure. I just
had a Caesarean and was determined to get out of bed and see him.
but it still had the softness that you would attach to a nursery. There was a little
bit of medical intervention but just a very small part
Was it a big NICU?
No it was a very small NICU but they didn't actually do any surgical procedures at that
particular hospital, St. Johns.
We made some amazing friends there who said if you're staying in this hospital you
know you're on the next step to going home - you just don't want to get transferred.
And we got transferred.
And that's what happened.
So where did you go after that?
To Children's Hospital Los Angeles
...and we actually arrived... the transfer procedure usually takes quite a lot of time.
There's alot of paperwork to be done,
and so much attention needs to be given to the transportation of your new born obviously
Did they transport him by ambulance?
By ambulance, yes.
and so we arrived at Children's Hospital Los Angeles and by this time it was pretty late
in the evening and our first impression that evening was ...
You know a total overwhelming experience about the plethora of medical equipment which really
does afront you when you first walk in.
Totally unprepared.
Alot of beds. Alot of kids.
Alot of beds and I think that's another thing that you know the lack of space between the
individual families.
Oh yeah.
You know sadly it's the situation where alot of children are, alot of new borns are
in the NICU and it's a whole world that you almost didn't know existed.
Until you're there.
So what took you into the NICU? Why were you there?
My son Reuben was born within about a week, actually exactly a week, he was diagnosed
with Charge Syndrome.
You'll have to explain that
I will explain that.
Charge Syndrome is, it's a birth defect if I can use that word
which affects 1 in 10,000 births which is actually relatively common
if you look at some of the other birth defects and syndromes.
But those first 7 days, things were kind of topppling in terms of there being an overall
diagnosis.
When he was born he failed his new born hearing test for example. But before that he aspirated
from nursing and within a couple of hours he was taken to the NICU rather than the room
where we were headed.
and so within that first week we were ticking alot of the boxes heading towards Charge Syndrome
and then the medical journals opened and we believe your son has this.
Wow. So how did you guys feel?
It's a big bomb.
Yeah.
Because it's really
I believe it's like an experience of grief in a different sense.
You have certain expectations of what your life is going to be post birth especially
when you've planned to have a child for a very long time.
And then the experience is really quite different from that so the journey you thought you were
taking is actually in a completely different direction.
Yes same here
You have the nursery at home, ready to go, ready for the baby to be there, and then boom.
You're there in the nursery without your baby.
Yeah so that's definitely difficult and challenging.
So what happened during those 6 weeks? Did he have a surgery, was it procedures? What
was going on during those 6 weeks.
Well procedures a very much a daily apect of being in the NICU.
Procedures, x-rays, blood tests,
if you were sqimish that really does have to go out of the window
and it's amazing how
you know the human spirit and your own expectations in life really just go to the side and out
the window.
and you are in a sense forced to deal with the situations.
Yeah
you may have a couple of hours of going home and just crying and crying it out
and you think
I've got to get on with it. I've got no choice
I've got to get to the NICU
Going into the NICU and you know that whole experience when we first get there of "oh
my god. oh my god."
But what's the most memorable thing that you can think of. Like for me I think it was mostly
washing your hands. I never knew how much you had to wash your hands.
Absolutely.
and you know the sense that is most associated with memory is smell. And so everytime I smell
that same lotion
Riight
.. sterilizing lotion that they use in the hospital, I'm brought right back there
The irony is Reuben actually has no sense of smell. So he will be using different senses...
That's true. Because you go in there and you just don't ever think of
you know when you go through the normal process of having a kid, you have to sanitize your
hands and wash your hands but it seems so normal to have to
you know full on scrub all the way to the elbows sometimes and really stand there before
you can even walk into the presence of your own child.
Yeah. Absolutely. and wear a gown at times, wear a mask, there are different levels of
precautions
Yes that's a big challenge.
For more episodes featuring our discussion with Catherine, goto www.LoveAndHope.TV
This episode is sponsored by "Love And Hope In The NICU"
The inspiring and encouraging book that every NICU parent must have
It gives you thoughts and words of inspiration for your journey in the NICU.
Written by NICU parent Cassandra R. Melhuish
For more information goto www.loveandhopeinthenicu.com to purchase your e-book and book.