WEBVTT

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I found a frog.

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[music] This story has a beginning
and it\'s not just about a 7-year old

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wearing a hearing aids. It\'s
about what he was through.

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For the first year the only time I felt
completely comfortable was I was in the NICU

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or talking to people that were there
and understood the trauma of what

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happened. Say I\'m going to be a big sister.

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I\'m going to be a big sister.
It\'s now August 13th.

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Another month has passed. Part of the thing that makes
this story so wild is it was a perfectly normal

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pregnancy. Everything went fine up until
the night that we were having him.

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The first thing that I remember was when
they delivered the head and they suctioned,

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I could hear them suctioning his mouth. I
remember thinking well, I\'ll hear him cry now

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and I didn\'t. And then they delivered the
rest of him and they handed him to me.

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And I think that at that point I
realized that something wasn\'t right.

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[sil.] Every birth is a mysterious event.
Bathed in hopes and

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expectations. These
expectations suddenly shift

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when a baby is born prematurely
or in distress and the infant

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is whisked away to a neonatal
intensive care unit or NICU.

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What was this again? 2cc per
(crosstalk), 4cc of Dextrol

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2-10, it\'s uh. About 1
out every 10 newborns

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begins life in this alien environment.
Making the NICU an unexpected detour

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for more and more families. Including
those having multiple births,

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like these quadruplets.

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All right, pumpkin. 1715.

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Just plug it in.

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Like that. OK. Since 1980, there has been
a 52% increase in the number of twins

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and a 400% increase in the
number of higher multiples.

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Most of these infants will end up in NICU.

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Advances in neonatal medicine allow
us to save smaller and sicker

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infants. And also give rise to
complex, ethical questions.

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Within the unique world of the NICU

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infants who have just began their lives
struggle to overcome tremendous obstacles

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and respond with an
instinctive clinging to life.

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The NICU leaves its
impression on those who work

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day after day in this high-tech,
high-stress world. And forever

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changes the family that pass through here.

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[sil.] The first time I\'m going to see
him, I think I\'m going to be very scared.

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Scared about what he\'s going to look like.

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Keesha was admitted to the hospital
and placed on strict bed rest

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after her water broke five-and-a-half
months into her pregnancy.

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So far she had lasted 11 days, significantly
increasing her baby\'s chances for survival.

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First born you don\'t think
you\'re going to have a preemie.

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You, you, when you think about a bay, you
think about the Gerber kid or Gap baby.

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You\'re not thinking about a
baby this small or you know,

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something being wrong with him.
You ask questions,

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there\'s so much uncertainty because no one wants to
reassure you about anything. Because no one really knows

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what the outcome can and will be.

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I think, when I, when I first touch him
I might just cry like crazy because

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, you know, I just feel him now, you know.

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I, you know, I just, I just feel
him and I don\'t know how he\'s

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going to actually feel, you know,
he\'s, is he, that he\'s really

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going to be a person. He\'s gonna
move and he\'s gonna look at me.

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And I\'m gonna tell him that, you
know, you put me through a lot of

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trouble to be here so you
better be the President.

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[sil.] Just six hours later
Keesha developed a fever and

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suddenly went into labor.
You\'re doing good.

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Push, push. That\'s it. Baby\'s out.

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Zachary was born three months
early, weighing just 2 pounds.

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I need to have a stethoscope. Can someone get the heart rate?
(crosstalk) We need to cultivate, we need to cultivate the placenta.

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The placenta. Oxygen. Suction.(inaudible)

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Life outside the womb presents many
challenges to Zachary\'s premature systems.

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Like all preemies he is now at
increased risk for lung problems,

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infection, and brain damage.
We\'ll make this baby safe. OK.

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By the time he was 10 minutes old
Zachary had been transferred

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to the NICU and placed in a heated bed.
Unable to maintain his own

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body temperature. Boy.

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Can I get some uh, 10cc Albumin 5%. 5%.
Machines and monitors now became his lifelines.

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Alerting staff to any
changes in heart rate,

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breathing, and oxygen levels.
Anne is getting the Albumin.

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He was placed on a respiratory device called CPAP that
delivered pressurized air to prevent his tiny lungs

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from collapsing.

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[sil.]

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Before the 1980\'s few babies born
at Zachary\'s age and weight lived.

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Technological advances now give
him a 90% chance of survival.

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[sil.]

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[music]

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He\'s got a little cap on.

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Sorry, it\'s OK.

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First time when I\'d seen Zachary, I was
touching him, went to see if he was like real.

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He\'s so small and, and his skin is so

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thin. And I just couldn\'t
believe it something this small

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was alive.

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[sil.]

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I, I never, it never really even occurred to me
what happened. My babies were born early. They\'re,

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in my family we hadn\'t, we don\'t
have an incidence of it, so,

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you know. I just had this image of babies in an
incubators. Yeah. Which are now called isolettes.

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And I knew that there was a place,
you know, where that happened

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and took place but didn\'t
really know anything about it.

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Rami was delivered nine weeks early by emergency
C-section. When a routine sonogram revealed a dangerous

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condition called intrauterine growth
retardation that frequently leads

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to stillbirth. Weighing
just 1 pound 14 ounces

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Rami was alarmingly small
for his gestational age.

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I was envisioning this great natural childbirth,
you know. And I felt a lot of loss.

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[sil.] From what you were
expecting to happen. Yeah.

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I think I processed it. Yeah.
It\'s a little hard to

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move. I\'m entangled in tubes already.

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You got a lot of tubes on there son.

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Hello. Hello. People would ask
me how much does he weigh.

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And I would just say you don\'t want to know. I can\'t say
it, it\'s to little. You know, you\'re going to freak out

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when I tell you. And then you have to go in
to the whole ramification of what is uh,

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intrauterine growth retardation or small for
gestation age. So, I would sometimes just avoid

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the question entirely.

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[sil.] You\'ve got the shampoo?

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Yeah. Are we doing the feed first or the
bath first. Oh, the bath always first.

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That\'s the way. Never put them in the bath after
their feeding, not a good, not a good thing. OK.

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Of you go and get the water. All right.

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[music] Hi, sweetie pie,
after your bath you get your

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food. Good. Take it easy.
Yeah. Take your time.

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He won\'t let you fall, I promise. OK.

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Rami.

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[sil.] Good boy.

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OK. We got that. Yeah. That\'s OK.

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Particularly for me, I think
it\'s particular intense because

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I didn\'t know my father. And uh,

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I sort of knew going into this
that Rami was going to be,

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you know, a link or connection,
a sense of continuity

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from the father I never had.

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I guess I just spent so many years looking
backwards and dealing with that loss.

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A loss that I didn\'t realize was a loss when I was a kid. When I
was 6 years old because I didn\'t know any different, you know.

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Parents were separated, you know, you grow up. This is how
the world is. You don\'t realize that until you get older

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and you see other fathers and
sons and you realize what you

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missed. That\'s when it hits.

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So, uh, but now I\'ve got that.

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What\'s that all about.

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The joy of digestion.

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[sil.]

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He\'s a little 26-weeker, 670
grams of respiratory problems.

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Yesterday he reached increasingly
tachycardic, tachypneic and retractor.

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(crosstalk) Well it\'s about time I need. OK. So we can
do that chart together. I say hear you go early because

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we\'re trying to get him out of here for that last couple
of days. And this is the uh, the down syndrome baby.

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Yes. OK. I don\'t think the general
public knows too much about NICUs

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because most babies are healthy. Most
pregnancies are normal. We see all

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kinds of families. Um, people who are high
powered executives, very well educated,

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people who are just the average Joe, Joe off the
street. And with them come all kinds of babies.

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The one thing that happens though is that the
playing field is leveled here because every

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parent is worried about the same thing. Is my
baby going to survive? Is my baby going to be OK?

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You can\'t control what\'s going to happen

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here. Most of what we do in there
is trying to keep people together.

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Trying to keep ourselves together
and support each other through um,

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the day-to-day stresses of the job.
And um, most, most

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of what we do is really, you know,
treat the parents as well as the kids.

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You know, compassion. Cause what may
be routine to us is not routine to

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them. If most people
were, were like us, uh,

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and they are I\'m sure. Uh, there, there, I guess
there\'s a tendency to think that nothing can,

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is going to go wrong. After Jake was
born the nurse came in with the baby

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and he was all swaddled with a little hat on. And
she kind of shoved him in front of me and said,

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\"Kiss your baby. I\'m taking him downstairs.\" And
I remember thinking she wanted me to kiss him

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because she doesn\'t think he\'s going to live.
Jake was born at full term with a serious

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birth defect called a diaphragmatic hernia.
In which the muscle between his abdomen

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and his chest cavity never grew closed.
As a result all his

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abdominal organs had moved into his chest
preventing his lungs from fully developing.

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Diaphragmatic hernia has a high
mortality rate and without

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surgery Jake had virtually
no chance of survival.

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So, they whisk him away out of the room into a
formal delivery room where everything is tile and

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stainless steel. I can\'t see the
baby, I can\'t see Jake at all.

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Uh, I have to surmise from a crowd around me, one
of the, the beds that must be where he is because

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everyone\'s there. I\'m in
the room alone again,

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and, and again in comes the nurse
and she\'s, she\'s literally running

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into my room and she just said, \"Do
you want your baptized?\" And I said,

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\"Yes.\" And I told her. She said, \"What\'s his
name?\" And I said, \"Jacob James Francis Servino.\"

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That\'s when I think I came out of shock
and I thought they only baptize babies

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in an emergency if it\'s a really serious
thing. This must be really serious.

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[sil.] Here we go. The grey in
the, that you see is all the uh,

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the large and small intestines
occupy, taking over the, the

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upper chest cavity. There
is no cavity for his lungs.

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His heart and his lungs are squished
over here on the, on his right side.

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Amazing. When you\'re dealing with
children with diaphragmatic hernias

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what the, the major problem is, is not the, not the
intestine in the chest but the development of the lung.

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If the lung doesn\'t develop properly
then this child, children don\'t survive.

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Dr. Ginsburg gave him a 5% chance.
Right, right. Yeah. That day.

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He really didn\'t think he
was going to make it. No.

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He didn\'t think so. Jake was
rushed to the operating room

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and for over five hours surgeons
worked to correct the defect.

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Well, when we actually performed the operation the
hole in the diaphragm, the defect was, was large.

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And when we reduced everything and we got the
intestine and everything out of the chest, the lung

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was very small. The lung on the left
side was very small. Frankly this was a

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bad one. Jake\'s survival was
the primary concerns but

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not the only one. Because his lungs were so
small there was a chance he didn\'t receive

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enough oxygen at birth which could
result in permanent brain damage.

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[sil.] When they came up and said that he\'d
survived the operation and we could go down.

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We walked in and he, he was on a
paralyzing drug. So he\'s paralyzed

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and not only did he have a respirator in but they wanted
that respirator staying. And so he had tape covering

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his face and his, I mean you couldn\'t see
any of him. What you could see was, I walk,

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I remember walking up to the
bed and going, \"OH my God,

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he has red hair.\" I couldn\'t cope with seeing all
that other stuff so I\'m going to see the red hair

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because you know, that\'s a normal thing.

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There he is. Jake\'s got this
tube which is the respirator

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tube which goes all the way
down into the ventilator here.

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He\'s got a stomach tube which he\'s holding on to
here. Would love to be yanked out of his mouth.

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Underneath that white bandage is his scar.

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He\'s showing us all

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that he\'s a pretty strong kid.
Ah, that\'s OK.

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Love you Jake.

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I\'ll talk to again in a little while.

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And during the night uh, the
temperature went up, uh... Oh, OK.

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So, I just. Many of the controversial issues raised
by modern medicine play out on a daily basis

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in the NICU. Um, the baby\'s
on triple antibiotics.

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Has a head block. A full term
pregnancy lasts about 40 weeks.

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This baby girl was born after 23 weeks
gestation. Currently the earliest

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point a baby can survive outside the womb.

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She depends on a mechanical ventilator to support
her immature lungs. And her eyes are shielded

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to protect them from the bright lights.

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[sil.]

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She obviously needs it. As the neonatal
physician reviews the baby\'s care questions

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arise about making critical
choices when the outcome remains

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unclear. You don\'t always have uh, you know, that
golden opportunity before someone delivers a preemie.

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But we went over the statistical
chances for a baby like this.

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Many 26, 27 weekers now really do
quite well. But the statistics are

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abysmal for 23, 24 weekers. Much
higher incidence of cerebral palsy,

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deafness, blindness, mental retardation.

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All kinds of specifities issues. And
I think you have to be very, very

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frank with parents about that. Most
people say, Oh any, at any cost

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doctor just do everything. Aggressive, be
aggressive. This is what we want. Be aggressive.

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But sometimes aggressive
gets you out but no intact.

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And that\'s the ethical dilemma you\'re always
faced with. There has to come an area where you

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use you\'re clinical judgment that
you weigh the parents\' wishes,

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get a clear sense of where we\'re going with all this
and what\'s the end point because you\'ve got seconds

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to think do I do something, do I do
nothing. How much do I do. Do I continue,

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do I stop, do I. While you\'re doing
things, I mean incubating a baby

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this size isn\'t the easiest thing. You know,
we have to work really hard and really,

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really struggle with every decision
you make. Ever electrolyte value,

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every gas. Every single move you make it,

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I mean this is a kid. It\'s an amazing
privilege really. I mean the hours

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are just pure hell. But likewise if I
see this kid back here in three years

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um, you know, what do you say about that.

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[sil.] Neonatal medicine has undergone
dramatic changes in recent years.

00:20:05.000 --> 00:20:09.999
New treatments and technologies
have allowed us to push back

00:20:10.000 --> 00:20:14.999
the boundaries of what is considered
viable and have transformed the

00:20:15.000 --> 00:20:19.999
NICU environment. Researchers are currently

00:20:20.000 --> 00:20:24.999
looking at the impact of this stressful environment
on a newborns rapidly developing brain.

00:20:25.000 --> 00:20:29.999
Efforts to reduce sound and light levels,

00:20:30.000 --> 00:20:34.999
employ gentle touch, and involve parents
in their baby\'s care are not only

00:20:35.000 --> 00:20:39.999
improving outcomes but are actually shortening
the length of stay and cost per baby.

00:20:40.000 --> 00:20:44.999
Which runs $1,000 to $2,000 a day.

00:20:45.000 --> 00:20:53.000
[sil.] The first time I held
Jake, they wrapped him up

00:20:55.000 --> 00:20:59.999
and I sat in the chair. Yeah. I got his
face. I got his little pumpkin face here.

00:21:00.000 --> 00:21:04.999
Look at this little pumpkin.
Hello, hello cutie.

00:21:05.000 --> 00:21:09.999
When I had gone out to lunch that day he was still
on the respiratory so I had no visions of holding

00:21:10.000 --> 00:21:14.999
him or anything. And uh, not only was it the
first time I was holding him but really

00:21:15.000 --> 00:21:19.999
the first time I was seeing his face.

00:21:20.000 --> 00:21:24.999
Jake had survived his precarious entry into
this world but his underdeveloped lungs placed

00:21:25.000 --> 00:21:29.999
him at risk for serious
respiratory complications.

00:21:30.000 --> 00:21:34.999
Once you got there, leaving there was very
difficult because you really didn\'t know

00:21:35.000 --> 00:21:39.999
what was going to happen when you were gone.
There\'s like a little magical thinking going on.

00:21:40.000 --> 00:21:44.999
Where as long as I\'m staying here and
I\'m watching him breathe then he\'s not

00:21:45.000 --> 00:21:49.999
going to stop.

00:21:50.000 --> 00:21:54.999
Walking in there had a huge impact on me, and to the point
where I had to put everything down to just stand there

00:21:55.000 --> 00:21:59.999
and, and just be there. What I
realized after a while was that

00:22:00.000 --> 00:22:04.999
he knew when I was around even though
he wasn\'t awake uh, just by the touch.

00:22:05.000 --> 00:22:09.999
And I could put my hands on his head
and it would be a calming effect.

00:22:10.000 --> 00:22:14.999
It\'s really one of the biggest
memories of the bonding between

00:22:15.000 --> 00:22:19.999
me and my son.

00:22:20.000 --> 00:22:24.999
Sean used to come with us. Yeah. She came with us. Yeah. It was nice, too.
She was two and a half. She was a welcome uh, little 2-year old in the

00:22:25.000 --> 00:22:29.999
NICU. Just like

00:22:30.000 --> 00:22:34.999
that. She feels that she wasn\'t left out.

00:22:35.000 --> 00:22:39.999
And that makes a difference to her today.

00:22:40.000 --> 00:22:44.999
This was a very huge experience that affected our
lives forever and for it to have the sibling

00:22:45.000 --> 00:22:49.999
totally left out, she\'d still be feel left
out. When we talk about this kind of stuff now

00:22:50.000 --> 00:22:54.999
she doesn\'t.

00:22:55.000 --> 00:22:59.999
[music] Don\'t do this young lady.

00:23:00.000 --> 00:23:04.999
Candice where\'s your hand.

00:23:05.000 --> 00:23:09.999
Give it to me. Give it back later, OK.

00:23:10.000 --> 00:23:14.999
Those nails are very long we have to
cut them. OK. It\'s a very special

00:23:15.000 --> 00:23:17.999
place to work. I mean what (inaudible)

00:23:18.000 --> 00:23:19.999
would you take up and hug and kiss
in the morning after you feed them.

00:23:20.000 --> 00:23:24.999
I mean, you know. It just doesn\'t happen.
But the babies you can do all this love.

00:23:25.000 --> 00:23:29.999
You can give them all this love and care.
That\'s right. What\'s

00:23:30.000 --> 00:23:34.999
the matter with you. You do get attached
to them. Uh, you can\'t help not to.

00:23:35.000 --> 00:23:39.999
Uh, especially if you taking care of the
same baby day in and day out and you um,

00:23:40.000 --> 00:23:44.999
you see their progress and
their setbacks and you

00:23:45.000 --> 00:23:49.999
really bond with them. You\'re with
them for 12 hours of the day.

00:23:50.000 --> 00:23:54.999
Hello, sweetheart. Hello. What, oh, look
at those eyes and you were all crying.

00:23:55.000 --> 00:23:59.999
Huh, were you all crying. Oh, look at you
grinning and look at the outfit I bought for you.

00:24:00.000 --> 00:24:04.999
Show me it. Ah, I\'m so proud
that wearing it. That\'s great.

00:24:05.000 --> 00:24:09.999
There not just patients, it\'s relationships you
grown with babies and there\'s a lot of babies.

00:24:10.000 --> 00:24:14.999
It, I guess you have to really bond and have
relationships there\'s babies I remember.

00:24:15.000 --> 00:24:19.999
Um, that have really touched me that,
that I remember for a really long,

00:24:20.000 --> 00:24:24.999
long time because I think they,
um, they stay in your heart,

00:24:25.000 --> 00:24:29.999
they just stay in your heart.
So, um, yep, that\'s the rewards

00:24:30.000 --> 00:24:34.999
of it.

00:24:35.000 --> 00:24:39.999
Look who\'s sleeping. That\'s it.

00:24:40.000 --> 00:24:48.000
[sil.]

00:25:00.000 --> 00:25:04.999
He\'s sleeping with his mouth open. Yeah. But
Keesha, he\'s handsome. Look at him. Baby\'s tough

00:25:05.000 --> 00:25:09.999
baby. Is he going to be tall?
Yeah. Very tough.

00:25:10.000 --> 00:25:14.999
He\'s very small. Mommy,
you want to touch him?

00:25:15.000 --> 00:25:19.999
You can touch him, Mommy. Just like this.
You scared to touch him. Why

00:25:20.000 --> 00:25:24.999
you don\'t want to touch him. To small.
He\'s too small to touch

00:25:25.000 --> 00:25:29.999
him. I didn\'t say pinch him.

00:25:30.000 --> 00:25:34.999
I said touch him like this. See. Mommy,

00:25:35.000 --> 00:25:39.999
he pee and everything. He can do
all of that. That\'s his diaper.

00:25:40.000 --> 00:25:44.999
What do you think, Mommy. You
think he\'s going to make it?

00:25:45.000 --> 00:25:49.999
He\'s a strong. See that\'s going to be
your grandson. That\'s your grandson.

00:25:50.000 --> 00:25:54.999
See. The baby grow just like you.

00:25:55.000 --> 00:25:59.999
Handsome boy.

00:26:00.000 --> 00:26:04.999
Bye, fella. See you later.

00:26:05.000 --> 00:26:09.999
[sil.]

00:26:10.000 --> 00:26:18.000
[music] I\'m a single mom
and that\'s hard when

00:26:20.000 --> 00:26:24.999
you\'re a single mom to go through this because you
may have your friends, you may have your family but

00:26:25.000 --> 00:26:29.999
it\'s important to that significant
other there with you.

00:26:30.000 --> 00:26:38.000
[sil.] Down in the NICU you
don\'t see like one parent.

00:26:40.000 --> 00:26:44.999
You see like two parents. You see like mommy and
daddy seeing them. And me, you just see me.

00:26:45.000 --> 00:26:49.999
[sil.]

00:26:50.000 --> 00:26:54.999
I want the father to participate so he
came and he seen him. And he seen him like

00:26:55.000 --> 00:26:59.999
with the tubes and all that stuff. Which I know
it could of been worse. I\'m a nursing student.

00:27:00.000 --> 00:27:04.999
He\'s a lay person looking in
saying you\'re crazy, that could be

00:27:05.000 --> 00:27:09.999
no worse than what it is right now. He\'s like he has
a tube, he has all these IVs, and the machines is

00:27:10.000 --> 00:27:14.999
going off. Let\'s go. Hi.

00:27:15.000 --> 00:27:19.999
How are you today. Mmm.

00:27:20.000 --> 00:27:24.999
Mmm. Um,

00:27:25.000 --> 00:27:29.999
Zach is doing so well. He\'s gaining weight.
He was born at

00:27:30.000 --> 00:27:34.999
2 pounds 1.5 ounce and he\'s up
to 2 pounds almost 9 ounces now.

00:27:35.000 --> 00:27:39.999
Um, he\'s off of all IV fluids.
He\'s getting nothing

00:27:40.000 --> 00:27:44.999
but breast milk right about now.
And, and that scares me,

00:27:45.000 --> 00:27:49.999
every time it goes off. He gets
anxious when I talk about him.

00:27:50.000 --> 00:27:54.999
Well, that sound, every time
I hear it beeps I look at

00:27:55.000 --> 00:27:59.999
two numbers. The top number on
the monitor tells me how his

00:28:00.000 --> 00:28:04.999
oxygen content is in his body. And
the second, the bottom number

00:28:05.000 --> 00:28:09.999
tells you his heart rate.
I think that I, I\'m

00:28:10.000 --> 00:28:14.999
coping better. I mean there\'s still endless
nights of crying and coming in and being worried.

00:28:15.000 --> 00:28:19.999
And, and trying not to cry in front of
him because I think that he\'ll know.

00:28:20.000 --> 00:28:24.999
Um, well, you know, I\'m
doing an amazing job,

00:28:25.000 --> 00:28:29.999
you know, being by myself handling a lot, a
lot of the crisis and stresses in my life.

00:28:30.000 --> 00:28:34.999
And just trying to focus on Zachary.
You know, the love,

00:28:35.000 --> 00:28:39.999
the love I have for him and what we will
share. But you go home and you cry anyway.

00:28:40.000 --> 00:28:44.999
You cry because you look at the empty space
where the crib is not up because you\'re afraid

00:28:45.000 --> 00:28:49.999
to put that crib up. Because you
don\'t know what\'s going to happen.

00:28:50.000 --> 00:28:58.000
[music] A baby\'s course through the NICU

00:29:10.000 --> 00:29:14.999
is always unpredictable.

00:29:15.000 --> 00:29:19.999
That night Zachary\'s heart rate and oxygen levels
began to drop. X-rays and blood test revealed

00:29:20.000 --> 00:29:24.999
that he had developed pneumonia. I just
wondering, concerned about his um, SAT.

00:29:25.000 --> 00:29:29.999
His oxygen, you know, D-SAT.
No. D-SAT so, for

00:29:30.000 --> 00:29:34.999
during the morning. So, um, he\'s been
breathing, been breathing pretty good.

00:29:35.000 --> 00:29:39.999
Mm-hmm. And uh, he\'s still
on antibiotics. OK.

00:29:40.000 --> 00:29:44.999
OK. I just have got them fears
because he was doing so well.

00:29:45.000 --> 00:29:49.999
I don\'t know I just felt, just a fear

00:29:50.000 --> 00:29:54.999
of losing him. I can\'t even tell you.

00:29:55.000 --> 00:30:03.000
[sil.] There\'s always that thing on the
back of my mind saying that he may have

00:30:05.000 --> 00:30:09.999
uh, some type of complications later
down the road. You think those things.

00:30:10.000 --> 00:30:14.999
But I feel like I have to be his advocate.
I have to speak up for him. And I have to

00:30:15.000 --> 00:30:19.999
um, make sure that whatever is being done
is, is necessary and the right things

00:30:20.000 --> 00:30:24.999
are being done to get him out
of there as fast as he can.

00:30:25.000 --> 00:30:29.999
And I, I want to be involved even
if, even if so be it, that he\'s

00:30:30.000 --> 00:30:34.999
only here for a couple of months out of my
life. But the months that he is I made all

00:30:35.000 --> 00:30:39.999
the difference.

00:30:40.000 --> 00:30:44.999
[sil.] The biggest threat to a premature

00:30:45.000 --> 00:30:49.999
infants fragile immune system is infection.
One day without warning Rami\'s

00:30:50.000 --> 00:30:54.999
condition worsened. We got a
call at 8:30 in the morning

00:30:55.000 --> 00:30:59.999
from Dr. Marron saying
that um, Rami was very

00:31:00.000 --> 00:31:04.999
ill. Rami had developed a life
threatening intestinal infection called

00:31:05.000 --> 00:31:09.999
necrotizing enterocolitis or NEC.

00:31:10.000 --> 00:31:14.999
So, I rushed down there and they
had him back out of the isolette

00:31:15.000 --> 00:31:19.999
and back in the open bed, back
with the IVs. It\'s that feeling of

00:31:20.000 --> 00:31:24.999
progressing, progressing. And you\'re just hoping,
you know, he\'s getting bigger and then boom.

00:31:25.000 --> 00:31:29.999
He\'s back, he\'s back to what he was.

00:31:30.000 --> 00:31:34.999
In and out. Yeah. He\'s resting

00:31:35.000 --> 00:31:39.999
up for his next bout.

00:31:40.000 --> 00:31:44.999
I was just trying to uh, get a sense
of what\'s going on here. You know,

00:31:45.000 --> 00:31:49.999
have we passed into a place
where this is not good.

00:31:50.000 --> 00:31:54.999
[sil.] When I first saw him

00:31:55.000 --> 00:31:59.999
uh, um, I was called STAT.
And his NEC really came

00:32:00.000 --> 00:32:04.999
out of nowhere. There was no fore warning
and when I looked at him my first reaction

00:32:05.000 --> 00:32:09.999
is, this baby is going to die.
And if he doesn\'t die

00:32:10.000 --> 00:32:14.999
we\'re going to lose this bowel. And it
doesn\'t really get more frightening then

00:32:15.000 --> 00:32:19.999
that. I don\'t think I ever
experienced a moment like that.

00:32:20.000 --> 00:32:24.999
Where you just really
have nothing to go on.

00:32:25.000 --> 00:32:29.999
You have absolutely no control over the situation. There\'s
nothing that you can do except just stand there and let

00:32:30.000 --> 00:32:34.999
everyone do their jobs.

00:32:35.000 --> 00:32:39.999
[sil.]

00:32:40.000 --> 00:32:44.999
A bad day in the NICU is I guess um,
you know it\'s emotionally exhausting

00:32:45.000 --> 00:32:49.999
in ways that it\'s hard to explain.

00:32:50.000 --> 00:32:54.999
You, you\'re talking about a baby. You\'re talking about a
life, maybe a new life, maybe a life that you\'ve known

00:32:55.000 --> 00:32:59.999
for a month and they had a really bad set
back. And your hearts already in that

00:33:00.000 --> 00:33:04.999
situation and then you watch them take those two steps
back. And you have to watch the mother grieve over

00:33:05.000 --> 00:33:09.999
this and the father. The one thing that

00:33:10.000 --> 00:33:14.999
never ceases to amaze me is how just when you
think that a situation is under control after

00:33:15.000 --> 00:33:19.999
you\'ve spent about an hour at a, at a
baby\'s, you know, bed side, you know,

00:33:20.000 --> 00:33:24.999
you just, you might just walk away for a moment. And
then all of a sudden the situation just changes

00:33:25.000 --> 00:33:29.999
dramatically. And all you did was maybe go
and sit down and try to do some charting.

00:33:30.000 --> 00:33:34.999
[sil.]

00:33:35.000 --> 00:33:39.999
Once you get passed the technology you\'ve
got to deal with the human part of it.

00:33:40.000 --> 00:33:44.999
The technical part, there parameters to
follow, there vital signs to look at.

00:33:45.000 --> 00:33:49.999
You\'re measuring things very clearly. And you have an
idea of what you\'re going to do if something\'s wrong.

00:33:50.000 --> 00:33:54.999
When you\'re sitting and holding the hand of a mother
whose baby is dying, there\'s no script for you,

00:33:55.000 --> 00:33:59.999
there\'s no parameters to follow. You\'re, you\'re
following your gut. You\'re following your heart

00:34:00.000 --> 00:34:04.999
and you\'re following their lead. What, what do they
need and sometimes it\'s just for you to stand there

00:34:05.000 --> 00:34:09.999
an hold them, nothing more.

00:34:10.000 --> 00:34:14.999
Three weeks after his
operation, Jake finally had his

00:34:15.000 --> 00:34:19.999
first feeding. But he was unable to
keep anything down. And test revealed

00:34:20.000 --> 00:34:24.999
an obstruction in his small intestine.

00:34:25.000 --> 00:34:29.999
He\'s like totally almost all off the wires and things
are actually starting to look normal and then next day

00:34:30.000 --> 00:34:34.999
it\'s all, your back. Now the
whole cycle starts over again.

00:34:35.000 --> 00:34:39.999
Jake needed a second operation to repair the
blockage in his intestines and went on to develop

00:34:40.000 --> 00:34:44.999
heart and liver problems.
In the bad moments

00:34:45.000 --> 00:34:49.999
I would constantly think that if I could just
see him running on the beach then nothing else

00:34:50.000 --> 00:34:54.999
in life will ever matter.
Jake running down the beach,

00:34:55.000 --> 00:34:59.999
with the waves and everything, became in my
head a symbol for everything being the way

00:35:00.000 --> 00:35:04.999
it should be. We need to
hold on to a vision of

00:35:05.000 --> 00:35:10.000
things being the way they should be because
nothing in your world is as it should be.

00:35:20.000 --> 00:35:24.999
I\'ve seen some real wonderful
things that medicine has done um,

00:35:25.000 --> 00:35:29.999
probably almost miracles
but, but, but everything

00:35:30.000 --> 00:35:34.999
isn\'t in that realm. And you can only do

00:35:35.000 --> 00:35:39.999
the possible and sometimes the,
the reality of the possible is,

00:35:40.000 --> 00:35:44.999
is painful.

00:35:45.000 --> 00:35:49.999
Most NICU infants do well. But there
are those for whom the outcome is not

00:35:50.000 --> 00:35:54.999
as good. They may survive
their life threatening crisis

00:35:55.000 --> 00:35:59.999
only to develop chronic health problems,
like cerebral palsy, mental retardation,

00:36:00.000 --> 00:36:04.999
or learning disabilities.

00:36:05.000 --> 00:36:09.999
In coming to a place like a NICU and you say, wow, all this
equipment, tubes, and everything else. They must be able

00:36:10.000 --> 00:36:14.999
to save everyone. The fact
is we can\'t and we don\'t.

00:36:15.000 --> 00:36:19.999
And the question then becomes should
we save every baby we can save.

00:36:20.000 --> 00:36:24.999
But as soon as you think you know the
rules, some baby comes along who survives

00:36:25.000 --> 00:36:29.999
who shouldn\'t have. Who should of been
impaired but isn\'t. And they come back to you

00:36:30.000 --> 00:36:34.999
years later and they\'re happy and healthy and
running around and joyful. And you think, wow.

00:36:35.000 --> 00:36:39.999
You know, we almost made the choice not to resuscitate.
And it makes you stop and think you have to

00:36:40.000 --> 00:36:44.999
constantly reevaluate, you
have to keep choosing.

00:36:45.000 --> 00:36:53.000
[sil.] The symptoms of
Rami\'s intestinal infection

00:36:55.000 --> 00:36:59.999
had been detected early and after two weeks
of intensive antibiotics and close monitoring

00:37:00.000 --> 00:37:04.999
he recovered from his
serious brush with NEC.

00:37:05.000 --> 00:37:09.999
And now that he\'s uh, off of the
IV back on the, I kind of feel

00:37:10.000 --> 00:37:14.999
like we\'re, we\'re more or less where we were before he got
sick. Exactly, exactly. So what, what do the next several

00:37:15.000 --> 00:37:19.999
weeks uh, look like encapsulated. I
mean before he goes home. He\'s got to

00:37:20.000 --> 00:37:24.999
grow and. Really just very simply, growing. The
fact is now he\'s on enough calories where he

00:37:25.000 --> 00:37:29.999
doesn\'t need the central line and can sustain his blood
sugars. Mmm. Because with him being small for gestational age

00:37:30.000 --> 00:37:34.999
the blood sugars staying up has always been
an issue. Mm-hmm. But we seem to be over

00:37:35.000 --> 00:37:39.999
that obstacle as well. So, um, no.
It looks like he should just have a

00:37:40.000 --> 00:37:44.999
completely full normal recovery from the NEC.
So, I\'d like him on a little bit more feeds

00:37:45.000 --> 00:37:49.999
and a little bit bigger.

00:37:50.000 --> 00:37:54.999
[sil.]

00:37:55.000 --> 00:37:59.999
Just something one of the nurses
um, encouraged me to do early on.

00:38:00.000 --> 00:38:04.999
Which is called kangarooing, putting
him right next to my skin. Um,

00:38:05.000 --> 00:38:09.999
it is really nice. He,
he relaxes right away.

00:38:10.000 --> 00:38:14.999
And right now he\'s kind uh,
working out something.

00:38:15.000 --> 00:38:19.999
What you working on little one, huh.

00:38:20.000 --> 00:38:24.999
But I like it because I can feel, you know, when
he\'s off the monitors it\'s a little nervous ear,

00:38:25.000 --> 00:38:29.999
it\'s a little nervous at first. But when you
get him you can really feel him breathing and

00:38:30.000 --> 00:38:34.999
you can tell that everything is OK.
And um, just very nice.

00:38:35.000 --> 00:38:39.999
Cause that was one thing that
I really pictured in my mind

00:38:40.000 --> 00:38:44.999
when I was pregnant was that moment of breast feeding
when he\'s very close and that kind of bonding.

00:38:45.000 --> 00:38:49.999
And this is kind of second best
to that cause he\'s right here.

00:38:50.000 --> 00:38:54.999
[sil.]

00:38:55.000 --> 00:38:59.999
Shh, shh. Oh, my gosh, you\'re going crazy.

00:39:00.000 --> 00:39:04.999
What\'s wrong?

00:39:05.000 --> 00:39:09.999
What\'s wrong? There

00:39:10.000 --> 00:39:14.999
gonna come over here and then they\'re gonna put you
back on that thing because. You see, I thought

00:39:15.000 --> 00:39:19.999
you\'d change your mind. Mmm.

00:39:20.000 --> 00:39:28.000
[sil.] OK. We\'re going
to let him sit in the

00:39:30.000 --> 00:39:34.999
tub. You\'re going to let him sit in the tub.
OK. We\'re going to let him sit in the tub.

00:39:35.000 --> 00:39:39.999
You just have to support his head.

00:39:40.000 --> 00:39:48.000
[sil.]

00:40:00.000 --> 00:40:04.999
He\'s holding my hand so tight like let
go of me please. It helps him feel safe.

00:40:05.000 --> 00:40:13.000
[sil.] You got to get
dried up, really quick.

00:40:25.000 --> 00:40:29.999
I feel like a mom now. I can do more care
for him when I\'m there. And he has less

00:40:30.000 --> 00:40:34.999
things that he\'s hooked up to.

00:40:35.000 --> 00:40:39.999
I haven\'t noticed his personality yet.
But I do know that he knows I\'m there.

00:40:40.000 --> 00:40:44.999
That\'s my boy. He\'s peeing himself,

00:40:45.000 --> 00:40:49.999
he\'s peeing himself.

00:40:50.000 --> 00:40:54.999
Ah, man. He\'s looking
like, Oh, I had to go,

00:40:55.000 --> 00:40:59.999
I had to go.

00:41:00.000 --> 00:41:04.999
Yeah. I know when I put my hand in his
head it calms him down. You know,

00:41:05.000 --> 00:41:09.999
and I, I just know that
he knows that I\'m there

00:41:10.000 --> 00:41:14.999
in his own way. I like to believe that
even if he doesn\'t. I like to believe that

00:41:15.000 --> 00:41:19.999
he knows that his mom is there.

00:41:20.000 --> 00:41:28.000
[music] Hi. You remember me.

00:41:40.000 --> 00:41:44.999
Who\'s that. He likes to be
the center of attention.

00:41:45.000 --> 00:41:49.999
Yes he does. You want to come out?

00:41:50.000 --> 00:41:54.999
It took me a little while to realize
that I shouldn\'t postpone any sense

00:41:55.000 --> 00:41:59.999
of joy out of concern for Rami\'s condition.
You know, at first

00:42:00.000 --> 00:42:04.999
you\'re just so fearful, you know, and then after a while
that I just got weary of that. And I, I just thought,

00:42:05.000 --> 00:42:09.999
it was just coming up in me. Yeah, yeah.
Can\'t hold it back. I\'m thrilled to death.

00:42:10.000 --> 00:42:14.999
You know, here\'s our little son, you know. Yeah.
Wow. I don\'t know what\'s happening tomorrow

00:42:15.000 --> 00:42:19.999
but you know, he\'s here right now. He looks at me in
the eye and I look at him in the eye. And he acts

00:42:20.000 --> 00:42:24.999
like a little baby and he does baby
things and he\'s a little human being.

00:42:25.000 --> 00:42:29.999
And this is our son and man, I\'m
thrilled to death, you know.

00:42:30.000 --> 00:42:38.000
[sil.]

00:42:40.000 --> 00:42:44.999
Something\'s going to happen today.
Yeah. Gonna go home.

00:42:45.000 --> 00:42:49.999
[sil.]

00:42:50.000 --> 00:42:54.999
You got to mom. We\'ll, we\'ll let you.
We\'ll feed you before you go.

00:42:55.000 --> 00:42:59.999
Yeah. Hey, little one. Got your, got
your bassinet all ready with your

00:43:00.000 --> 00:43:04.999
sheepskin in there. Mm-hmm.
Just like here. Yeah,

00:43:05.000 --> 00:43:09.999
yeah. It\'s the big day.

00:43:10.000 --> 00:43:14.999
Just have to. Not that picture again.
Ah, ah.

00:43:15.000 --> 00:43:19.999
He\'s got his eyes open now. You want to
say good-bye to everybody. Say good-bye

00:43:20.000 --> 00:43:24.999
to Mona. Ah, bye-bye little buddy.

00:43:25.000 --> 00:43:29.999
Bye-bye. Keeping you warm.

00:43:30.000 --> 00:43:34.999
Yeah. OK, daddy. Yeah. Definitely.
OK. OK. Bye-bye. Bye-bye.

00:43:35.000 --> 00:43:39.999
OK. Somebody will have to say
good-bye to Dr. Fisher for me.

00:43:40.000 --> 00:43:44.999
Hi. We\'re going home. You excited?
Very. Just got here

00:43:45.000 --> 00:43:49.999
and I\'m going home. Say, we\'re going home.

00:43:50.000 --> 00:43:52.999
We\'re going home. Bye. (inaudible)

00:43:53.000 --> 00:43:54.999
stay outside.

00:43:55.000 --> 00:43:59.999
When Jake was finally discharged from
the hospital I remember thinking that,

00:44:00.000 --> 00:44:04.999
in a way it was, it was kind of bitter
sweet. I mean of course, we were thrilled

00:44:05.000 --> 00:44:09.999
to be going home but part of you is frightened and part of
you almost wants to run around and take him back inside

00:44:10.000 --> 00:44:14.999
because if anything happens,
you know, they can fix it.

00:44:15.000 --> 00:44:19.999
Hold on tight. Say, look what I got. John
ServinoWho\'s coming home? UNKNOWN Look,

00:44:20.000 --> 00:44:24.999
look. Look what you bought, balloons.

00:44:25.000 --> 00:44:29.999
[sil.]

00:44:30.000 --> 00:44:34.999
You did all of that. We\'ve gone over the healthcare
record. And you\'re going to have a visiting nurse.

00:44:35.000 --> 00:44:39.999
Yeah. I\'m going to take these off.
Disconnecting the machine. Sure, go ahead.

00:44:40.000 --> 00:44:44.999
(inaudible)

00:44:45.000 --> 00:44:49.999
This is a big moment Keesha. You\'re off

00:44:50.000 --> 00:44:54.999
the machine now. You\'re
temporary lifeline is gone.

00:44:55.000 --> 00:44:59.999
Hey. Let\'s just change his diaper

00:45:00.000 --> 00:45:04.999
and. This is his sweater for the ride

00:45:05.000 --> 00:45:09.999
home, right. Yeah. You know, it really
feels great. You know, that to know that

00:45:10.000 --> 00:45:14.999
there\'s an end to this day.
One day there\'s an end.

00:45:15.000 --> 00:45:19.999
Before 8:00, call me before 8:00 (crosstalk)
OK. But we don\'t, you never forget.

00:45:20.000 --> 00:45:24.999
You, you don\'t forget this day. Um,

00:45:25.000 --> 00:45:29.999
you don\'t forget that time when felt
vulnerable and you didn\'t have any

00:45:30.000 --> 00:45:34.999
control. Right here. Let\'s try this.

00:45:35.000 --> 00:45:39.999
Much better. Not 100% but another month

00:45:40.000 --> 00:45:44.999
and he\'ll be growing out.

00:45:45.000 --> 00:45:53.000
[music]

00:46:05.000 --> 00:46:09.999
I don\'t have nothing to do with it. Yeah.

00:46:10.000 --> 00:46:14.999
OK. Zachary is 14 months

00:46:15.000 --> 00:46:19.999
now. He\'s not developmentally delayed or anything
like that. I didn\'t really have to get him any

00:46:20.000 --> 00:46:24.999
real intervention as far as, you know.
I mean other than getting him the

00:46:25.000 --> 00:46:29.999
laser surgery for his eyes. I mean developmentally
he was, he was crawling. I mean he was crawling

00:46:30.000 --> 00:46:34.999
a little backwards in the beginning. I started to
get worried but he got it together eventually.

00:46:35.000 --> 00:46:39.999
I mean it\'s hard because you
got to play both roles.

00:46:40.000 --> 00:46:44.999
But you know you get a lot of support
because for dad, for Father\'s Day Sunday,

00:46:45.000 --> 00:46:49.999
(I got so many calls,
giggles) Happy Father\'s Day.

00:46:50.000 --> 00:46:54.999
So, you get two holidays.
Yum, yummy, yummy.

00:46:55.000 --> 00:46:59.999
Yeah. Hee-hee,

00:47:00.000 --> 00:47:04.999
food time.

00:47:05.000 --> 00:47:09.999
No, never swap him not for a full term

00:47:10.000 --> 00:47:14.999
because his, his experience I grew from it.
It made me such

00:47:15.000 --> 00:47:19.999
a stronger person. You know, I
have a different outlook on life

00:47:20.000 --> 00:47:24.999
and on disappointments, you know.
But I don\'t think he\'s

00:47:25.000 --> 00:47:29.999
a disappointment anymore. You know, I used to think he was
a disappointment because I wanted to get the big belly

00:47:30.000 --> 00:47:34.999
and the shower with the big
belly and all this stuff. And,

00:47:35.000 --> 00:47:39.999
and now I just think of it as a miracle,

00:47:40.000 --> 00:47:44.999
you know.

00:47:45.000 --> 00:47:49.999
[sil.] I\'ve learned how I
can endure and how you can

00:47:50.000 --> 00:47:54.999
find comfort in yourself, just in yourself.

00:47:55.000 --> 00:47:59.999
[sil.]

00:48:00.000 --> 00:48:08.000
[music]

00:48:25.000 --> 00:48:29.999
Are you going to make it?

00:48:30.000 --> 00:48:34.999
[sil.] Hello. Dat-dat-da.

00:48:35.000 --> 00:48:39.999
Almost anytime other than this year I would of said,
that like, everything is just growing, he\'s just great.

00:48:40.000 --> 00:48:44.999
He\'s perfectly normal. But now he\'s starting
school and we\'ve run up against problems.

00:48:45.000 --> 00:48:49.999
And they\'re learning problems that don\'t
register. It\'s like a technical learning

00:48:50.000 --> 00:48:54.999
difficulty but he has attention
problems and he has sensory,

00:48:55.000 --> 00:48:59.999
a lot of sensory integrative problems. Which means
that the way he perceives certain things, the way

00:49:00.000 --> 00:49:04.999
he hears things is not necessarily
the same as another kid.

00:49:05.000 --> 00:49:09.999
And so, when he\'s in class the noise can kind
of get to him and he\'s not able to focus.

00:49:10.000 --> 00:49:14.999
And it\'s not unusual for kids that have
been through NICU experience to have

00:49:15.000 --> 00:49:19.999
learning problems.

00:49:20.000 --> 00:49:24.999
For where ever you

00:49:25.000 --> 00:49:29.999
are. To the People just assume that it has
to be the most horrible experience but

00:49:30.000 --> 00:49:34.999
my reaction is to say to them but it
was wonderful. And it isn\'t wonderful

00:49:35.000 --> 00:49:39.999
that my child went through what he went
through but I don\'t think that I\'ll ever feel

00:49:40.000 --> 00:49:44.999
as good as I felt in the NICU or
as bad as I felt in the NICU.

00:49:45.000 --> 00:49:49.999
I hope because I hope I\'m never in a situation
again where life and death is that close

00:49:50.000 --> 00:49:54.999
and that in front of me. Um, as
it is every day in, in a place

00:49:55.000 --> 00:49:59.999
like that.

00:50:00.000 --> 00:50:04.999
[music] From the moment he was born I
feel like I opened an invisible door

00:50:05.000 --> 00:50:09.999
and I stepped a cross it on,
on the side that\'s here was

00:50:10.000 --> 00:50:14.999
my life and everything that I thought was
so important before and in one step was

00:50:15.000 --> 00:50:19.999
in another world and stayed in that world.
It\'s like the day I walked out the door

00:50:20.000 --> 00:50:24.999
to have the baby and I said to my
mother don\'t worry I\'ll be back

00:50:25.000 --> 00:50:29.999
in 12 hours. And I never came back.

00:50:30.000 --> 00:50:34.999
And then you look at Jake and you realize
what it took. How many people it took

00:50:35.000 --> 00:50:39.999
for him to be here.

00:50:40.000 --> 00:50:48.000
[music]

00:52:30.000 --> 00:52:33.000
[sil.]