triplet update... NICU & surgical intervention

hey everyone me Kevin here I have a big

update on all three of our new children

which we are so blessed uh that they

were born on February 2nd but the reason

they were born on February 2nd was way

pre- term due to baby be having aites

which is a massive fluid buildup in her

tummy I'll brief you briefly give you a

glimpse here so so be prepared uh this

is not for the faint of heart this is uh

a 3 to four pound child uh that looks

like she's pregnant because of fluid

buildup and the problem with thees is

you don't know what's causing it there's

a chance it can go away on its own and

you might never find out uh there's a

chance it could be something really

really bad uh and there's a chance it

could be something in between which the

uncertainty of that is very very

scary and so yesterday

at uh midnight I received a phone call

from the medical center it woke me up I

you know went to sleep around 10: so I

got about two hours of sleep uh and

which is fine I purposefully left all my

phone on my watch on so that I would

wake up if in case something came up and

I'm so glad I answered because the

doctor said Kevin we need your

permission to conduct emergency surgery

on summer we have extracted bile from

her stomach that's not supposed to be

there and this is a sign that this

problem that we were hoping might

stabilize and go away is not going away

in fact we drained fluid and that fluid

has has now recurred so I authorized

emergency

surgery of

course it turns out that about 10 to

15% of her small intestine the disel

ilium died

uh due to some form of a blockage which

could be because of an infection which

probably wouldn't be viral because

they're two twins could be because of

genetics which is odd because you have

an identical twin that's totally

fine uh it could be because

of that's just the way things are

sometimes it's just the hand your dealt

and some kind of blockage occurred in

her intestine the body basically sealed

off that blockage and then as you are

receive nutrition and that nutrition

goes from your stomach through your

small intestine where where your small

intestine extracts nutrients it's

supposed to move to the colon where you

can then extract the fiber and the and

the bile which helps break down you know

fats lipids whatever uh but but there's

a blockage so imagine like a clogged

pipe bab it's exactly like a clock pipe

in your sink where you know you hit a

blockage and so what happens is you keep

packing on blockage blockage block

blockage until all of a sudden it rips

or the pipe bursts and that's what

happened Summer's pipe burst and it

spilled bile all around the inside of

her

internals and that's what was expanding

the inside of her chest cavity really

bad uh it's shocking absolutely shocking

that her vitals were as stable as they

were on just morphine uh because I mean

you saw how large she was I'll I'll show

you an x-ray as well it's it's crazy uh

what what she looks like this is um zoom

in a little bit so there's not too much

info there uh there we go this is uh the

X-ray and uh what you can see are these

sort of spots of air which you generally

don't want to see spots of air are black

and uh they're they're pushing up

against her let me zoom in a little bit

there we go infant abdomen view they're

pushing up against her lungs her lungs

should be expanded significantly below

those those rib levels there her lungs

are the little black things on the left

and right air shows up as black on an

X-ray and this is air in the chest

cavity which really shouldn't be there

now that could happen from from draining

fluid and then potentially air coming in

or which they ended up being their

abdominal gases so the section of her

intestine was cut out now she basically

has two open ends of of intestines

inside of her right now uh which is

crazy because yesterday as I was with

her virtually all day long I had to go

to a separate hospital to visit the

other uh uh two babies we know that

she's sitting there with basically a

4-in hole in her tummy that's gauze

packed and then iodine covered right now

because she's not done she had surgery

one 15 cm of her intestine was removed

now you have two open ends at some point

that's got to get put back together but

first they have to go in for another

surgery to see is any more of that

intestine failing

now losing about 8 to 10% of your

intestine is survivable without frankly

dietary restrictions once you start

getting to the 30 40 50% range that's

where you're going to start having

dietary issues now keep in mind as you

grow you're going to grow 10 to 15ish

per less of your intestine right because

that's been removed at at a three PB

weight so uh it's it is a big

deal and we have no idea what's going to

happen in this second surgery now to see

is there any more necrosis or has it

stopped I asked the doctor if they

removed any margin that that's sort of

like when you when you're like okay

here's the bad portion which we'll send

off to pathology to see like can we

figure out what caused this uh but when

you remove margin you basically say okay

here we're going to cut this section out

and now we're going to take off a little

bit extra which we took off maybe

another four to five uh

Mill so now these two things are loose

you're basically just pumping fluids out

of the sto stomach manually these are

all the tubes that are in uh uh in um

poor baby summer right now this is a

closeup of her uh while I was with her

last night before I came back here I'm

picking up Lauren so we can go back

there the babies are about a six-hour

drive away from from where we are right

now but

um she was looking at me at least to the

extent I can tell I I know that babies

they could see maybe about 6 to 12 Ines

away so I got really close uh and uh and

just talked to her for maybe five or 10

minutes this this was a a close-up

picture I got and you could kind of see

her pupil sort of looking right at you

uh and it it was really really a

beautiful moment but I'm only showing

her face because she literally has a

hole uh in her tummy uh again it's it's

covered in in gauze but you can clearly

see the hole uh since the iodine pack is

is a little transparent and so uh we're

definitely not out of the woods here

we've got a big second surgery coming up

and this comes after basically uh two

days after jay baby Jay had uh what's

called Numa thorax which is basically a

collapsed lung I'll show you a video of

Jay and uh then you can kind of you can

actually see where his plug is so this

is Jay right here and uh Jay right under

his arm there you can see his IV on his

arm right under his arm see that sort of

yellowish packaging there that is uh

that's his sort of chest plug to let air

come out but not back IIA in uh that's

because if there's still a hole in his

lung that air pressure could put you

know create issues basically for uh um

your heart and for your other vital

organs when you have air pressure in

your St in your chest you don't want air

in there now the good news is uh after

Summer's surgery uh she is

significantly more normal look at her

x-ray here uh on the right side you

actually have a profile before of her

the picture on the right you see that

black portion above all her organs which

have tissue has that color the black is

air that's air pushing down on all of

her organs so think about it like like

you're doing chest compressions pushing

down except it's air doing that that's

really painful uh poor summer has been

up from uh morphine to

fentanyl uh so she's on a fentanyl drip

and uh she's yesterday we had uh some

more as needed morphine she was clearly

exhibiting stress while I was there uh

which makes sense I me it's right after

a surgery she's been good over the night

so she's stable no PRN which the nurse's

joke is per RN but it's really Latin for

as needed uh but anyway on the left you

could see a much more normal chest

cavity uh the uh the little ropey there

that's the gauze there sort of a tie on

the gauze but see the the air uh on the

right that's the we believe I it's the

large intestine but we believe those are

just the sort of normal GI gases that

you would normally expect to see uh in

in a child so this is this is much more

normal and her lungs are expanding more

than they had been before uh of course

she's um we've got a breathing tube in

here we've got stomach suction in here

she's not on a feeding tube because

she's uh got a pick line so she's uh

getting her nutrition directly into her

her veins uh both uh Jay uh and violet

are on feeding tubes but that's because

they're so small here's a picture of me

with Violet uh she actually has this

little feeding tube right here she's

actually the strongest she's also the

smallest in weight 3 lb 7 Oz right now

and so when when we say I was feeding

her what you do is you hold them and you

try to give them the pacifier try to

keep them close and swaddled give them a

pacifier so they get the sensation of

eating but they're really just being

drip fed uh with a tube that basically

goes right into their tummy that's

pretty normal for for babies of this

size and so so far Jay looks like he's

recovering from his collapsed lung he's

stable uh Violet has been kicking but

the uh she's getting a little bit of

treatment for jaundice which is like

nothing super normal but it's kind of

cool because it's like her name's Violet

and this looks kind of violet but uh

she's great she's super feisty very very

alert she's really healthy for her size

at 30 they were born 32 weeks 6 days so

Violet's kicking butt Jay's recovering

which is

fantastic uh from from his his lung

issue and then summer we're just like so

hopeful and and and and putting out

whatever positive energy we can by the

bedside talking to doctors whatever we

can just to to try to be good the best

parents we can be that's why I'm back to

pick up Lauren today catch up with some

and we're going to go be there again for

surgery part two surgery part two won't

actually fully put her back together

it'll just take the ends of the

intestines kind of stick them up to your

stomach and uh and then you have little

bags and she'll stay like that for like

six to eight weeks it's called a sto and

uh then she'll be fully put back

together after a third surgery in about

six to8 weeks so she's still got a road

ahead of her and we really need her to

stay strong for these surgeries but

you know I have to say when when I had

twins uh and they were uh my first two

babies in the ncu were like oh no CPAP

you know the which is it creates a seal

and then it's the

Breather big deal big deal that's

nothing like if you ever have a baby in

the ncu and they're in the box and they

got the little monitors and CPAP it's

like that's that's compared to this

fantastic that's great and it's not to

minimize the intensity of being in the

niku I'm just comparing to myself like I

wish all they needed was that right now

so it it really shows you that there's

there's so much that you like there's

nothing you can do you could have you

could have more money you could do

whatever none of that makes a difference

like the cards you get dealt or what you

get dealt and then you just you got to

do your best with it now you know

summer's going to have a massive scar

above her belly button for the rest of

her life Jay will have a whole scar on

the side of his chest from a collapsed

lung uh but the goal is to make sure

they survive and can lead normal lives

but this has been U it's been very very

intense and uh just the range of

emotions that go with it are are crazy

but uh again I just you know I I it's so

weird I just remember the feeling of

having our children on CPAP in October

and oh no this is terrible and then then

like I really see terrible and obviously

things could be even worse from here

knock on wood that doesn't happen but

it's just it really makes you pause for

a moment and go holy sh

yeah anyway tell your loved ones you

love them