This is the story of Miracle Maggie
and Terrific Tom.
Maggie's amniotic sack had ruptured
around week 16/17. She was leaking
most of her fluid. Without it, she
has no lungs and there's no drug or
surgery that can fix it.
I was on home bed rest, the hospital
bed rest. Meanwhile, we sought
medical counsel, did an anmio-fusion,
leaked & bled, and had the occassional
contraction. Alas, my hospital say
was not as long as hoped.
Maggie is a scrappy fighter! She
breathed in what little bit of fluid
was in her sack to build her lungs.
She beat a fatal blood infection,
necrotizing enterocolitis (NEC). She
subdued jaundice from
hyperalimentation fluids. She came
home despite being born in her 2nd
trimester. Then, she had projectile
vomiting due to dairy allergies. And
she's conquering a hemangioma (blood
tumor) on her lower left eye. Despite
all this, she is a happy, chatty
baby ... Now a bit plump due to the
steriod for her eye.
Tom is a prince. We're certain that
he blocked the cervix from any
incoming infection thus keeping his
sister and himself gestating. But
since he was not distressed in the
womb, he was less well prepared.
Regardless, both babies triumphed over
respirators (with surfactant), sepsis,
anemia (with blood transfusions and
epogen), apneas (with
amniophylline/caffeine), heart
murmurs/PDA (with indomethacin), IVs &
PIC lines, gavage/bolus feedings,
retinopathy of prematurity (ROP), etc
and now synergist to fight RSV. Tom
is strong and has a strong
personality, not unlike his big sister
Ellie.
Below are the weekly email updates I
sent to friends & family during my
PPROM/NICU ordeal. I hope you find it
helpful, as I did the stories on this
wonderful website. Good luck with
your pregnancy/child(ren).
Week 19/20 story: During my routine 20
week ultrasound, we discovered that
Tommy (twin A) is a great size in a
great environment. However, Maggie
(twin B) is a very good size but in a
terrible environment -- very low
amniotic fluid. It matters most
importantly because she need to breath
in the fluid to develop her lungs.
Without it, she's not viable outside
the womb. I was in the hospital for
several days to figure out why we have
the problem as well as try some
general remedies (ie, massive fluid
volumes pumped via IV). It didn't
work, so I'm now at home on bed rest --
I can only get up to shower once a
day and go to the toilet, practically.
The numbers are not good for Maggie,
so hope for a miracle. And
unfortunately I'm in a nebulous time
in my pregnancy. If there is a demise,
we're putting Tommy in jeopardy
because my body may decide to abort
the dead fetus instead of just
absorbing it (normal at earlier stages
of pregnancy). Being born at 20 weeks
would be VERY bad for Tommy. Pre-term
labor is defined at 32 weeks.
We're not quite sure what the problem
is. And even if we did, there are very
few remedies. a) It's probably not a
twin-twin transfusion syndrome since
it's rare in fraternal twin.
Additionally, the ultrasound and
Doppler shows no evidence of cord
fusion. (Basically, this is when the
placenta or umbilical cords fuse
together and Tommy takes more than his
fair share. men. ;-) b) The placenta
should not be a problem because
Maggie's a decent size. She's smaller
than Tommy but within the range of
normal. c) The production of amniotic
fluid (ie, the baby's urine) is
probably ok, since her bladder and
kidneys appear fine on the ultrasound.
d) There's probably a small tear in
her sack. However, we can't find hard
evidence of amniotic fluid at the only
exit it's got (think "my water
broke.") So, we're not certain about
the cause. And even then, there's no
medicine or surgery that can be done
to fix it. I guess bed-rest is to
pregnancy complications as chicken
soup is to common colds.
So, despite my feeling great (went for
a swim the night before my 20 wk u/s)
we have to hope that staying
horizontal and calm will hold fluid in
Maggie's sack, at least long enough
for them to reach a "safe" time to be
delivered. Otherwise, we have to hope
that she gets absorbed by my body
leaving Tommy to continue to grow.
Depending on which of the multiple
outcomes happens, I may be back up in
about 4-6 weeks or maybe on bed-rest
until they are born in July/August. As
much as I don't want to be horizontal
(or quite for that matter!) for 4
months, let's hope for the later!
Week 21 update: We've had 1 hospital
visit (bleeding, *sigh*), OB visit
(scheduled) and Perinatologist (High
Risk specialist at NYU, and 2nd
opinion). We have 2 heart beats but
fluid levels are still terrible on
Maggie. She needs about 15 AFI and she
has less than 1. The poor thing looks
shrink-wrapped. Tommy is still happily
swimming in his sack, thank goodness.
The Perinatologist said that the down
side for Tommy is risk of infection,
which we can control with antibiotics,
and premature delivery at hopefully
a "normal but early" twin due date
(ie, early, but not dangerously
early). (Of course, there can be
another unexpected extreme.)
We'll be getting a 3rd opinion from a
highly regarded Perinatologist in the
area on Monday; and getting a 4th
opinion in NYC on Wednesday. We'll
also be seeing a Neo-natalogist soon,
too. It's not that we don't trust the
other doctors, but you never know what
some else might know. We'll keep you
posted.
Week 22 Executive Summary: Maggie and
Tommy are both growing bigger at about
1 lbs each, +/-. It's a week ahead of
schedule and statistically
insignificant – but I'LL TAKE IT!
However, Maggie is still shrink-
wrapped. Well, after four specialists
including two of the top 5 in NYC, we
have 4 different "recommendations"
(although their lawyers would not call
them recommendations, understandably …
crazy litigious society …). The two
NYC doctors' recommendations are very
similar but for different reasons.
First is wait and see, since risk of
infection is high with active
reduction (ie, termination of fetus).
The other, who's regarded by some
measures as the best, recommends wait
and see since a reduction does not
improve the chances of not going into
pre-term labor. Additionally, she's
willing to do an amnio-fusion (ie,
tank Maggie up with fluid). The
research is not complete, with only
some documentation from Italy. If
Maggie losses the fluid immediately,
1) we know definitively she has a leak
and 2) her prognosis is not good. If
she holds on to much of the fluid, her
prognosis is very promising. If the
fluid disappears but does not leak
out, we have other issues. We get
tanked tomorrow, Friday. Cheers!
Week 22, annotation: sh*t. 4
doctors, 4 recommendations (reduce: 2,
don't reduce: 2)… heavy bleeding… but
healthy ultrasounds… but still no
fluid… death in the family… major work
projects for Julian… and as my husband
(lovingly) describes it, I'm turning
into veal.
Week 23 update: Even though most of
the blue-dyed saline that was injected
into Maggie's sack on Friday leaked
out immediately, there was enough
today, Monday, for Dr. Stone to be
cautiously optimistic. We're to
return on Thursday morning. If the
fluid levels are still a bit higher,
then we'll do another amnio-fusion.
Who knew that Maggie's first "shots"
would be like this! Bottoms up!
(Yes, she's breech right now and it
might be better for her to be bottoms
up.)
Week 24: Apologies in advance. I'm
not in a good mood and this may be
more information than you really
want. The summary is that I've been
in the hospital. I'm really scared
about giving birth any minute now (WAY
too early). My husband and father are
really scared that I'll have a massive
hemorrhage and die (possible but
unlikely).
If you want the bloody details … early
warning, it's not pretty … I started
bleeding heavily on Tuesday -- not
good but not a big deal for me since
I've been bleeding since April 8th
(wk 21). But what scared me was the
sharp pain in my belly on Maggie's
side at 10pm. It eventually went away
but it was pretty intense. So, when
the bleeding didn't slow down on
Wednesday – I usually bleed a night
and slow down during the day – I
called my OB (since I wanted to avoid
having to call him in the middle of
the night!). He was on call at
Greenwich Hospital, so I went to visit
him there for a check. Since I was
feeling fine, I expected an ultrasound
then to be told to go home.
They admitted me right away – not
because there was anything obviously
wrong on the ultrasound but probably
because we're getting to the viable
stage – and started the paper work to
transfer me to my uber-perinatologist
Dr. Stone at Mt Sinai in NYC (cr@p! I
hate being in the hospital.) I spent
the uneventful night and got to ride
in an ambulance to NYC. (Neato! I've
never been in an ambulance before.) I
did LOTS of waiting in a very urban
hospital (yes, very busy and a heck of
a lot more diverse patients than my
small but well endowed community
hospital. For the IBMers: former CEO
Tom Watson Jr. recently gave $120M to
his local Greenwich Hospital. Yes,
that's M for millions. There's an
entire building/wing named after his
wife and him.)
Dr. Stone told me the ultrasounds
showed nothing new but would like to
keep me overnight for observation.
Boy, I am I glad we did! In the
middle of the night, I woke up at
2.30am to intense menstrual cramping
like pain in my lower belly. Turns
out I have having regular labor
contractions (yikes!). But the good
news was that my cervix was still
tight and long. PHEW! By about
5.30am the contractions stopped. When
Dr. Stone came to visit the next
morning, my usual interest in getting
discharged from the hospital as
quickly as possible was no longer
there. Friday night was mostly
uneventful and I asked/agreed to be
discharged.
Over the weekend, my husband and I
talked. We've agreed that if we're
determined to have the best possible
outcome, we're going to do whatever we
can – including going on hospital bed
rest, as recommended by Dr. Stone. I
hate being in a hospital. But I hate
regrets even more. Additionally, if
we were to run into complications,
Greenwich Hospital does not have a
trauma unit and (to put it as nicely
as possible), I'd rather have my
babies under the care of the Mt. Sinai
neo-natologists.
Week 24+: I'm in Mt. Sinai Hospital.
No infection. No hemorrhage. No
births. And, I have my first 5th
Ave./Central Park view room. Life is
good for the Committed Veal (hm, was
that redundant?).
Week 25: No infection. No
hemorrhage. No births. Had a few
moments of drama, but back to status-
quo. The longer I'm here means the
longer I'm pregnant. And the longer
I'm pregnant, the bigger the babies
get. So, ironically, I want to be in
my veal-box as long as possible.
Just discovered that Gwenyth Paltrow
gave birth to baby Moses at Mt. Sinai
a few weeks back. I feel very glam
now, ha ha.
Week 26 and still pregnant, hurray!
We did have 2 episodes of heavy-ish
bleeding that sent me down to Labor &
Delivery Triage, ugh. And my
hematocrit (blood measurement) is
moving towards "not good" (medical
term, not) which lead to discussions
of blood-transfusion (ugh, but just
discussions for now). The good news
is that Maggie's fluid levels are
rising. Dr. Stone thinks that some
of bloody chunks may be building a dam
at the tear site, allowing fluid build
up in Maggie's sack. The other good
news is that the veal-box with lousy
internet access (ie, limited
surfing/shopping) is doing wonders for
my AMEX bill. It's not been this low
in years!
Week 26, updated: Well, after not
bleeding all day Wednesday, I bleed
like crazy on Thursday. I was sent
downstairs to L&D, but this time I was
put on Magnisium Sulfate. UGH!
Everyone reacts differently to it, and
for me it was like my body/muscles
were weighted down with a ton of
bricks. My cervix was long and
tight. But after two days the
doctors checked again. I was 9cm
dilated. SH#T. It was too early for
the babies to be born. I sobbed. I
was rushed to emergency C-section. My
husband was not there and I asked the
anesthesiologist if I could hold his
hand. It was a really bad moment for
me.
Saturday, May 20, 2006
Thomas was born at 5.04pm weighing
1lbs 12oz and measuring 13 inches
long.
Margaret was born at 5.05pm weighing
1lbs 13oz and measuring 13.5 inches
long.
Both cried when born. I didn't see
the babies and I didn't believe the
doctors and nurses. But as it turned
out, we had a miracle. Maggie was
born with lungs.
This C-section was really tough on my
body and mind. I used all the energy
I had to visit the babies in the NICU
(in another state). After about 3
weeks, I finally started to feel human
again. In the end of the pregnancy, I
got contractions that wouldn't go
away, per usual. I was put on
Magnesium Sulfate which really knocked
me out for a few days. That, plus the
spinal and the pain killers post
partum really did a number on me this
time. I have some pain/discomfort in
my abdomen but at least I'm lucid now
(after 3 weeks).
Week 29, adjusted: Well, what a
difference a day makes. If I had sent
out this email on yesterday, I would
have written that the twins were doing
exceptionally well. Alas, Saturday we
had the step back in the NICU dance:
two steps forward and one step
back.
Miracle Maggie has been living up to
her name. Yes, she was bigger than
her brother at birth and her
respiratory system has been stronger
since then. Distressed babies are
stronger. Girls are stronger (duh ;-
). We're hoping her strength will
pull her out of a blood infection
which started in her digestive track
Friday night. This type of infection,
unfortunately, is not uncommon for
premature babies. The worst case
scenario is that and a step down is
brain infection/damage. (very
upsetting)
Tommy was off the respirator after one
day; and Maggie was off after two
days (but she's back with the
infection). They passed their birth
weights after a week. The original
brain scans for both are OK (phew!).
The heart murmurs have gone away after
the "standard" medication for
preemies. And they've had blood
transfusions (O+ if you want to
donate!). Before the infection, they
were both feeding "milk" through tubes
into their bellies (but getting most
of their nutrition through an IV).
Their isolettes' (aka incubators')
temperatures are set slightly lower
than their body temperatures – meaning
they're somewhat able to maintain
their body heat. We'll know about
their vision and hearing later. We
hope to have them home by late
July/early August.
DETAILS: Well, I guess my body knew
that it was better for the babies to
be outside than in (maybe?!). I write
that because there was so much gunk in
Maggie's tummy (ie, blood, blue dye,
etc), plus I had an infection but it
didn't cross over to them (thank
goodness!). Since we didn't expect
Maggie to have lungs, I just didn't
believe it when the nurse told me that
Maggie cried (!!) And I didn't
believe it when she graduated from the
high care NICU room to the medium care
room after 10 days (!!). Poor Tommy –
the protector of his sister, blocking
the cervix from labor and infections –
is back on the CPAP (continuous
positive airway pressure, ie huge
tubes up the nostrils) versus the high
flow nasal canula (petite tubes up the
nostrils). He had the first
transfusion (day 7 vs her day 10) but
only got one dose of the heart murmur
medicine (vs her 2 doses). (Hm … I
have a feeling I should not be
comparing them like this – bad twin
parenting??) His weigh fluctuates
more but his body temp was quicker to
semi-self regulate. I try to visit
them regularly. Julian will take
his "paternity leave" when they come
home. I want all available hand
then! One newborn is tough. I can't
begin to imagine two!!
Alas, another test for Miracle
Maggie. She developed a
gastrointestinal infection (NEC)
that's moved to her blood stream on
Friday night. We'll know more about
the antibiotics effectiveness later
this week.
Celeb gossip: For the post-partum
stay, I upgraded to a private room.
It's the one used by Elisabeth
Hasselbeck from "The View." And Ms.
Paltrow's room was directly across the
hall.
Week 30 adjusted: It's with mixed
emotion that I write this update.
(Both twins are fine.) The last
surviving triplet in the incubator
next to Tommy got the same gastro-
intestinal infection as Maggie.
Sadly, the baby passed Friday night.
I became friendly with his mother
since our babies were next to each
other and had similar due dates in
August. I can't imagine what she and
her family are going through,
especially since (like Maggie) her
baby was doing well the day before the
infection hit.
Miracle Maggie has passed another
grueling test. She licked the (NEC)
blood infection and it didn't travel
to the neuro system – what a FIGHTER!
She's stable now – feeding again and
on the nasal-canula.
Tommy must have had sympathy pains –
he got a blood infection, too. But
his was not life threatening.
(Crazy. Blood infections are VERY bad
things. But when a non-life
threatening infection is "just" a
blood infection, I know I'm warped.)
He's licked his infection, which also
did not travel to the neuro system.
He's going well – he's feeding, on the
nasal-canula and graduated to the
medium care section of the NICU today!
Week 31 adjusted. Happy First Month
Birthday!
Tommy is no longer on IV fluids and
taking all his nutrition from
expressed milk via a gavage (a small
tube to his belly). We're pushing him
to keep his body temperature even at
room temperature. He's in a newborn T-
shirt – it looks like a full length
robe on him (!). He's generally doing
well; however, he does continue to
have Brady's and Desats (slowing of
the heart and blood-oxygen
desaturation).
Maggie did it again. She graduated to
the medium care area only to have
abnormal abdominal x-rays the next
day – the gastrointestinal track is
inflamed. (I really don't like
these "one step back" moments.) She's
pulled through and has started feeding
again. You Go Girl!
They're the same weight on their month
birthday. Any bets on what dates
they'll leave the hospital and who'll
be heavier on that day? J (Yes, she
has Brady's and Desats for full
disclosure.)
Week 32 adjusted: Today is a good
day. Actually, we've had a few good
days. *knock wood* The babies are
stable – and they're starting to look
like babies instead of adorable little
monkeys. (And they sound like
kittens.) They had their first (of
many) eye exam – results are "normal
for preemies." They continue
the "caffeine" for breathing, blood
transfusions/epogen and B&D (Brady &
Desat).
Maggie has finished her antibiotics
and is feeding small amounts of
expressed milk continuously through
the gavage. She's still on IV for
some fluids/nutrition. She's hit the
3 pound mark.
Tommy started bolus feedings today.
Instead of the continuous feeding of
90ml over 10 hours, he's getting 20ml
every 3 hours – like a "normal" baby
feeding schedule. He's a few ounces
shy of 3 pounds.
Week 33 adjusted Happy Birthday USA!
Good news: Tom and Maggie are
stable/good.
Bad news: We've gone minivan
shopping. Ugh.
I got to hold/kangaroo both of them at
the same time!! The twins are off
IVs, are bolus feeding (25cc of milk
every 3 hours which is the max for
their weights), getting epogen shots
(to build red blood cells) and on the
nasal canula at the lowest (or near
lowest) settings to help them breath.
She's still 3 lbs and he's pushed
ahead by 2 oz. They're still in the
isolettes but the temperature is set
to "room temp."
Week 34 adjusted: The bovine analogy
continues: I've graduated from bed-
rest veal to dairy cow (ie, pumping
milk for the babies).
They're doing well. This past Friday,
they both graduated to the low-flow
nasal canula. And today, Tommy has
been off all respiratory assistance
(!!). They're both about 3.5 lbs and
17" (Tom) and 18" (Maggie) long.
(FYI, they'd be about 5 lbs in-utero.)
Many of you asked when they'll leave
the NICU. The short answer is
probably +/- 2 weeks from their
estimated delivery date. That's
August 21st for 40 weeks (normal
singleton) and August 7th for twin
gestation. The Mt. Sinai measure
is:
Can coordinate suck-swallow-breath,
which usually develops around this
time.
Can hold their body temperature in the
open air (ie, do not need heated or
covered cribs)
Not have any Brady's and Desats for 5
days (ie, no slowing of the heart and
keeping the blood oxygenated). This
last one is usually the final
hurdle.
Week 35 adjusted: This is a great
week. Maggie is off all respirator
assistance. I nursed both babies (er,
we tried to nurse but babies and I are
not getting it right yet). The are co-
bedding in the NICU!
Week 36 adjusted: Maggie's ROP exam
not good, but too early to make any
definitive statements. Both babies
passed their hearing tests. And since
they're 2 months old now, they got
their first set of vaccines. Ugh.
They're not quite 4 lbs yet.
Maggie is having billirubin issues
because she was on IV for so long.
It's not the type of juandice that can
be fixed with the lights. She needs
to take medicine.
Week 37 adjusted: Their gavage
feeding tubes have been taken out.
But 2 day later, Maggie's tube is back
in, then out again.
Week 38 adjusted: HOLY MOLY! Maggie
is ready to go home. She has not had
a B&D in 5 days and she's feeding
well. What a mixed emotion day. I'm
very happy that Maggie's well enough
to come home but tremendously sad that
Tommy has to say in the hospital.
Week 39 adjusted: Tom is coming home!
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