| |
2/20
Well its a boy and he should be making his appearance
somewhere
between the end of June and the middle of July. When they
did they
ultrasound they found his heart is not growing properly.
There is a
problem with the one ventricle, it is not forming the way
it should.
I will be going for a level 2 ultrasound and a fetal
echocardiogram
on the 27th. Keep us in your thoughts, hopefully it is
something
that can be fixed and he'll be ok. We'll know more after
this visit,
I'll let you know.
2/27
Benjamin has hypoplastic left side syndrome. His left
side is not
working. He will need surgery after birth (if he makes
it) and then
two more before he is 3. Things are not good, will be
seeing alot of
doctors to go over our options. Wanted to let you know.
Also,
please don't say anything to grandma temple we are going
to try to
keep her in the dark until we see how things are going.
3/24
Ben has Hypoplastic Left Heart Syndrome, in short the
left side of
his heart does not work at all it is basically calcified
now. There
is a three step surgery that will rework the right side
to make it
pump for both. We have been going back and forth from
here to Phila
to make arrangements for everything. I will be induced in
the
University of PA hospital in Phila sometime between the
end of June
beginnning of July so that we can have him taken to the
Children's
Hospital there. He will undergo his first open heart
surgery a day
or two after he is born (or sooner) and then the second
one will be
performed betwwen 4 - 6 months and the third sometime
around when he
is 2. The odds are good as long as he is healthy and
doesn't have
any other problems we aren't aware of. It is going to be
a long road
and my also include other things such as a heart
transplant or
pacemakers, depending on how things go. It has been very
trying on
us but we felt we made the right decision over
termination of the
pregnancy. They have only done these surgeries for 20
years so there
is no telling how they will be as they get older.
4/5
We went to Philadelphia today for my first high risk ob
appt and our
monthly echocardiogram. I am 27 weeks and according to
their scales
the 3 lbs I gained a few weeks ago when I went to the
doctor up here
I have lost again so I am -17 lbs for the pregnancy. They
did an
exam because Friday night I was spotting and they wanted
to make sure
that I wasn't dialating already but everything came back
fine in that
department too. They did a quicky ultrasound just to
check size and
he is right on size wise so the weight loss is not an
issue at all.
Our cardiogram gave us some excellent news regarding our
upcoming
surgery. The right side has already started growing extra
to make up
for the lack of the left side. The right side seems to be
in perfect
working order so that is super. Also the top of the heart
that at
this point is open in all infants and doesn't close until
after birth
is wide open, there is no narrowing which is also good
news. We also
toured the new Pediatric Cardiac ICU which just opened up
8 weeks
ago. It is absolutely wonderful and each baby has their
own nurse.
At first the babies are put into large rooms w/ 4 cribs
each, after
they have their surgery and are progressing well they are
moved to a
step down room in the CICU which is a private room with a
bed for one
parent to sleep in at night. They work with the parents
to get them
sleeping arrangements either in the hospital or for the
ones like us
who live far away and have other children they try to set
up a room
at the Ronald McDonald House. Both kids will be able to
be in the
ICU to visit the baby whenever they want, the CICU is
also equipped
with a large "playroom" for siblings to go play
in. We consider
ourselves very lucky to have such a wonderful place that
specializes
in this particular surgery so close and very lucky that
they caught
in utero so we can get things straightened out and get
him the care
he needs.
4/27
Rich and I are doing fine, very busy getting things
straightened out
here and preparing for the next few months. My next
appointment in
Philadelphia is on the 10th of May, should probably get a
set in
stone date for induction at that time. As it stands right
now, I
will have options as of 37 weeks which is the week of the
15th of
June. The first is to stay in Phila at the Ronald
McDonald House in
case I go in labor or until induction. The second is to
drive down
to Phila weekly until induction. The third is to schedule
the amnio
to check his lungs and induction at 37 weeks. I am not
comfortable
with the third option because I would like to hold off as
long as
possible to make sure his lungs are fully developed so
there are not
any added complications. Not sure what we are going to do
at this
point. My pregnancy in general is going well, I am now
starting to
gain some weight over the past two weeks I think it is
because Rich
is making me sit down and take it easy more. Hoping for
at least a 7
1/2 - 8 lb baby....the bigger the better.
5/10
I hope everyone had a nice Mother's Day, mine was spent
sick in
bed...yuck I hate the flu. Went to Phila today as
planned, today was
a much better day newswise anyway. Echocardio went well,
heart is
progressing as planned with the exception of the fact
that the leaky
valve he had last time is not leaking now......YAY! We
met with the
surgeon today, his name is Dr.
Gaynor a totally super guy in general
didn't bullshit us either which is the way I wanted it I
don't need
the candy coated version. They are all pretty much
convinced if he
is ok other than his heart than he has a good chance. The
baby is
measuring right on schedule give or take a few days, you
know how
ultrasounds are. My due date is July 7th
according to the doctors
down there and the ultrasound.
My OB appt went well also. I have gained 1 1/2lbs since I
was there
last 5 weeks ago, they said that the weight issue isn't a
concern
because I was packing a little extra bacon to begin with.
;) They
are planning to do the induction at 39 weeks 0 days which
is June
30th or around there. The only way that we are going to
do it
earlier is if things start progressing faster then we are
planning, I
start dialating etc. especially since I went so quickly
with Richie
once he decided to come. He is head down and has started
dropping
some so I got alittle waddle to my step.
Well I'm going to go get some rest, this flu thing is
terrible. My
next appt down there is in 5 weeks, I'll be seeing my OB
up here
every two weeks after the visit I have this week. 5/14
Had a size check ultrasound today. He is measuring right
where he is
supposed to be at this point and is in the 50 +
percentile and weighs
approximately 4 1/2lbs. The bad news is right now he is
breech, and
I'm almost 33 weeks. Hope by some chance he turns head
down quickly,
if not I'll have to have a c-section.....CRAP. I was
hoping to not
have to worry about that, but this kids is going to be
ornery all the
way. Don't have another doctors visit for 2 whole
weeks..YAY.
5/26
Just had my 34 weeks checkup today. Everything is going
well, I
gained 1 1/2 lbs so far that brings the total up to 3lbs.
She did
not do an ultrasound this time, says she will in two
weeks at my next
appointment and will also start the internals then (oh
joy). The
doctor did say that according to the last ultrasound two
weeks ago
that he is growing right on schedule and at this point
should almost
be pushing 5 1/2 - 6 lbs. Just wanted to let you know
that
everything is still going well. Next appointment is not
until the
10th and then my Phila appointment is the 14th....I will
be just
about 37 weeks then so we should get some definite dates.
Hope in
two weeks he is head down and everything else check out.
6/14
Just wanted to let everyone know that we went to Phila
today and here
is how everything went.
He is now head down (YAY!) and very low, so low that she
could feel
his head when she was checking me. I am 1 cm dialated. He
is
weighing in at about 6lbs 14oz right now, so we're
looking at a
possible 8 pounder. I will be induced on June
30th, we'll be going
down to Phila that morning and they plan to start at 9am.
They don't
think it will take very long going by how my labor was w/
Richie.
Anyway everything is good here, gonna be busy wrapping up
all loose
ends.
7/1
Only have a minute wanted to let you know. Benjamin
Patrick was born
yesterday afternoon at 2:25 after 3 hours of induced
labor. 7.9lbs, no
complications at all. His oxygen levels are in the high
80's low
90's and have been staying steady along with everything
else.
Surgery
is tomorrow morning w/ Dr.
Gaynor. I will let you know more
later, have to talk to Dr. Gaynor and get something to
eat.
7/3
He had his Norwood
yesterday, it has been 18 hours now since and
everything
is going great so far. His chest was closed right after
surgery and
he is starting to move around some and Rich said over
night he has
been starting to respond more and more. I have to call
today and try
to get things setup w/ the RMH(Ronald McDonald House),
we've been using the sleep rooms here at the CICU
in the CICU so far. I'll send you pics later, he's so
PINK I can'
even begin to express the joy I felt seeing that...but I
know you
know all about it.
7/4
They took Ben off the ventilator today and all is well.
:) We are so
happy, keep your fingers crossed that we are one more
step closer to
home. We're doing about as well as can be expected. We
have a room
at the RMH here in Phila only using it for sleep...can't
seem to rip
ourselves away from the little man. Things are quiet here
today,
forgot all about the 4th until I was labeling bottles
this morning,
oh yeah Kim you were right those bottles are good. Will
get some
pics taken later and sent to you all he looks so good.
I'm feeling
better, as swelled up as can be still don't have ankles
but at least
the room stop spinning now.
7/7
Well Ben was 1 week old yesterday, it seems like we have
been here an
eternity. He is doing really well, by tomorrow I may get
to hold him
(YAY!) as they are planning to take all the wires off. We
have had
only one slight setback but it was nothing big, he had
some fluid
around the lungs that wouldn't go away so they put a
chest tube in
today and got it all out. Tomorrow (Thurs) they are
taking that out
along w/ the RA wires. They started feeds on Tues and
will have him
up to full feeds as of 9am on Thurs. Rich went home this
afternoon
to pick up the mail and do a few odds and ends, he is
coming back
tomorrow. We still have to take our CPR and NG tube
classes, had to
cancel our CPR today because of waiting for the doctor
regarding
chest tube so we have to get that rescheduled. Things are
going to
be different for awhile till we get the hang of it. The
kids haven't
seen him yet, my mom has been having alittle difficulty
w/ Richie
because he screams everytime they go away I think it is
because they
put him in their car and left and I haven't seen him
since.
I'm now at the point where things have slowed down to the
point where
I miss the kids and am so ready to get back home as a
family.
Shouldn't be too much longer, maybe by the end of next
week.
Every day a little bit better
7/10
There is talk of Thursday or Wed., we have our CPR class
on Mon. I
haven't really heard much yet from the doctors but I
think we
probably will after the weekend. I will definitely let
you know.
7/14
I should be home later this afternoon. We were supposed
to be home
yesterday but some nurses don't know how to burp
babies.....long
story. I'll give you a call later after we get situated.
7/18
I'm trying to get things straightened out here. Yesterday
was a bad
day, Richie came home and he didn't handle Ben very well.
Today
after getting a good nights sleep he is doing better. He
is such a
super eater, his goal for the day was 480 and he is well
over 500.
All that boy wants to do is eat, just like my other two
guys. ;) I
am pumping and trying to increase my supply some, I am
slightly ahead
of him right now so that is good. Basically he is just
like a
"normal" baby except the meds. Our first
doctors appointment w/ my
family doctor is on Tues and we go back to Phila to see Dr.
Rychik on
the 26th. Will let you know how they go.
7/26
We came down to CHOP for our first exam w/ the
cardiologist. Ben's heartrate
was 216, they are in the process of getting the rate
down. We'll be
here hopefully only a day or so, will let you know when
we are home.
7/28
Well we're still here, looks like till Friday. Ben is
doing great
they are keeping him just to monitor him. Rich is taking
the kids
home today, we've exhausted all of our "mad
money" so to say. I'm
not real happy w/ the step down unit at all, it is all
new doctors
and no one has any answers....we haven't even gotten an
answer on
going home. I asked about a monitor yesterday and got a
unsure
answer from a resident....they would all discuss it and
decide if we
needed it.
7/29
Well after 4 more days in good ole Phila. we are home
again. They
attributed Ben's rise in heartrate to the surgery and
have now put
him on Digoxin. He is doing great since they got him
straightened
out. They ended up using a mixture of meds and a small
electrical
shock which they did by probe put down beside his heart.
As you can
imagine we sure did have a fun time w/ the other two kids
w/ us in
the ICU. We have now come to two conclusions:
1. We keep a bag packed by the door at all times.
2. We don't take the kids along to a checkup again. :)
Hopefully that is our last extended visit to Phila until
his next
surgery.
8/19
Well we came for a checkup today only to find out his O2
was in the
40s, no one knew by looking at him they thought the
pulse-oxygen monitor was broken
but the second one said the same. So off to the CICU we
went again.
After a catheterization that lasted hours they found the
blood clot
that is at the bottom of the shunt right at the pulmonary
artery.
They tried the balloon to get it opened up to no avail.
They
couldn't get the stent to where it needed to go so now
they are
trying a blood thinner. He will go late morning to see if
the
thinner took care of it, if not they are going to try to
go through
his neck to put a stent in. Hope one of these two things
work
because if it doesn't we will be having surgery again.
8/21
They did the second catheterization yesterday after
having him on
"super bloodthinners" as they called them. His
blood clot is now
gone, thank god. They still have him sedated and on the
vent but the
vent will be taken off later today. When he goes home
they will have
him on a bloodthinner that is injectable and given twice
a day, we
WILL also be leaving with a pulse-ox monitor this time.
8/26
we're still at CHOP it has been a week now. We are still
trying to
get the right doseage of bloodthinners for him. He will
have
injections twice a day until he has the hemi and possibly
afterwards.
The clot is gone but they are concerned now because the
fact that he
is a baby and got a blood clot is not common. We will
have to have
blood work done to see if it is in his genetic makeup for
blood
clots. I really hope this has made sense, I'm very tired
and the
stress is getting to me. Rich left on Monday, he had to
go back to
work since he doesn't have any vacation left. Dani and
Richie are at
my mom's, Dani had her eye surgery on Tuesday...all is
well there.
She starts school on Monday, I just hope I'm home for
that.
8/30
We finally got home on Saturday. They still haven't
gotten the med
right but we're going to do the blood work in Allentown
which is only
1 hour away. He's been fussy but I think his stomach is
upset from
all the meds, antibiotics and now the fortification of
his formula
and breastmilk. He is now almost 10 lbs but they wanted
to increase
the calories because he only has gained 1.5lbs since
birth (and all
of that was in the time he was home). I gotta go, Dani's
bus will
be here soon.
9/9
Ben is 10 weeks old already. We had a checkup at
CHOP today and came
home on the same day YAY! They were pleased with
everything. The
big news is that they are planning the second surgery for
about 6
weeks from now when he is 16 weeks (4months). The
cardiologist feels
that even though he is doing fine now, that his shunt has
been
comprimised some because of the clot. Although we will be
happy to
have the second one done and more stability, it is going
to be rough
to see him having another surgery already.
He now weighs 10lbs 9 oz and the doctor is pleased with
his weight
gain.
9/22
I wanted to let you know how our appointment went. Just
as I
thought, they believe that Ben's numbers are starting to
decrease may
signal that it will soon be time for the hemi. They have
not set a
definite date but we go back in two weeks. Tomorrow we
are meeting
with our local cardiologist which we have never met due
to all of his
hospitalizations.
9/25
Just had Ben to the emergency room again this weekend for
oxygen desat....then magically he went from 55% to 81%.
This is driving me
crazy.
10/1
We were at CHOP again for a couple days this week due to
a small cold w/
congestion that Ben had.
10/6
Ben has been on full time oxygen since Sunday, he spiked
a fever on Sunday
night and his sats went very low. I'm going to try to
take him off
today but yesterday he was only holding his own at high
50's to low
60's. I don't know why, he is alittle congested but I
guess it is
because his sats started to decend anyway. Needless to
say I haven't
gotten much rest. I will let you know how it goes.
10/6 (2) Didn't go well....dipped into 40's. Called Dr.
Rychik and took Ben
down. Going to do some tests. Dr. Rychik is not sure, it
is not RSV
they are pretty sure of that....could be that damn shunt.
In
stepdown right now.
10/7
Spent all day waiting....for someone or something to
happen. Finally
late afternoon we saw Dr. Rychik...thank god. He asked
about test
results...the tests were never taken. So now they will
be, waiting
on results of CBC test. CBC test came back kinda low but
not
extremely...gonna give blood to see if that helps the
oxygen
situation.
10/8
Gave blood overnight. Ben ran two fevers before 11am but
no one
seemed concerned. He is very cranky...but is off of the
oxygen. :)
Later that night Ben ran slight temps off and on, but at
10:30 he ran
a very high temp. I called the nurse in and demanded that
someone do
something because this was the third fever since he
received blood.
Heartrate went up to 185 because the resident was arguing
w/ me over
what could be wrong and that he wanted to run a spinal
tap on Ben.
Midnight, call from the lab.....bacteria in Ben's blood
and urine not
sure if it is the same. Started immediately on IV
antibiotics.
10/9
Still waiting for tests, urinalysis and blood test so
they can adjust
to the correct antibiotics...the two he is on he will
only be able to
take a couple days.
10/10
They think they have pinpointed the bacteria in Ben's
blood. Funny
thing is that they don't think it is the same one in his
urine. They
are adjusting the antibiotics.
10/11 - 10/15
Very boring days as we basically sat and played waiting
for those 7
days to be in.
10/15
Good news, bacteria is GONE. YAY! We just got the go
ahead from Dr.
Rychik, Dr. Gaynor and Dr. Clark to go
home.....immediately. :) Was
going to wait till tomorrow morning because the last
antibiotic
wasn't finished till 8:30, but instead we left at 9:30
Friday
night....couldn't wait to get home. :)
10/26
Ben was sick from the end of Sept until the middle of
Oct with what we and the doctor thought was the flu and
possibly a
narrowing of his shunt. He was not sick constantly but
had battles
with fevers and flu symptoms also times of desaturation
into the 50's
and 40's. He was admitted to the hospital three times and
in the
emergency room here twice, finally on the 6th of October
after being
on oxygen for 4 days he was admitted to CHOP. Bloodwork
indicated
that his hemoglobin was low (he has always been slightly
anemic) so
he was given a blood transfusion. Almost immediately
after his
saturations went back up and we could take him off the
oxygen. On
the Friday, he ran temperatures of 102 and blood cultures
came back
positive with gram negative rods. These are the kind that
you can
only get two ways, either lines in the hospital or a
bladder
infection....but the bacteria in his urine was a
completely different
kind. He hasn't had any lines in since his
catheritization for the
blood clot in august so they aren't sure. Anyway, he was
put on IV
antibiotics for a week and we were able to come home on
Oct.16th. He
has been doing much better than he has in awhile thank
goodness, he
has been a very sick little boy.
Yesterday we went to his cardiologist for a checkup and
they have now
scheduled stage
2 of his surgeries. He will have it over
Thanksgiving. Tenatively this is the schedule: Thursday
the 18
pre-op testing, Friday the 19th catheterization, and
Monday the
22th the surgery. If all goes well he will be home the
following
Monday or Tuesday. Alice and my mom will be taking care
of the kids,
hence the decision to have it over the holiday.
Ben will be 4 months old on Saturday and he is 12lbs 4oz
and 23 3/4"
long....just a peanut. He's been wearing alot of sleepers
since he
cannot wear most of Richie's old clothes they are too
big.
10/18
Have to be at CHOP for the pre-op testing at 11:30. First
saw Meg,
got length and weight...next was echo, not sedated. He
was a little
fussy but fell asleep after awhile...everything looks
good. Next
came EKG, real quick....Ben liked that lady. After that I
talked to
the nurse and got info regarding the cath and surgery.
Then went for
blood tests. After those Ben and I went back to the RMH
for some
sleep.
10/19
Got up early, had to be back at hospital for 7 am cath.
Well there
was an emergency and Ben never went for his cath until
10:30. Only 1
hour later Dr. Rome came out and told me everything was
wonderful. :)
I went back to the room and waited for Ben, he was very
sleepy so we
just left him sleep. They were going to release us to the
RMH at
6pm. About 5 or 5:30 Ben woke up and had a desat episode
into the
50's....we couldn't get him back up w/o oxygen. I started
right away
to ask about a blood transfusion since he has had such a
time w/ the
anemia. Finally at 11 pm I got them to agree w/ me. Blood
---
|
