Lucile Packard Children's Hospital
is located in Palo Alto, adjacent to Stanford University Hospital,
approximately 20 miles north of San Jose, CA and 40 miles south
of San Francisco.
thru 4-18-04 (Heather) Ethan celebrated his first Easter at Great Grammy
and Granpy Booker’s house. We died Easter eggs
and even let Ethan hunt for three of his own. Ethan
also rolled over on his own for the very first time
on Easter Sunday!! We were all very excited! What
a day to remember!!
Thursday the 15th we traveled down
to Stanford to have pre-op tests done for Ethan's
surgery which was scheduled for Friday at noon. Ethan
had an echo, a chest x-ray and some blood work done.
He did well for the first two, but screamed for the
last as you can imagine. After the blood was drawn
and I picked him up he was a happy camper once again!
We met with the physician assistant to the surgeon
just to go over the procedure and sign the paper work
to allow the surgery. We then made our way back to
our “home away from home” the Stanford
Motor Inn for a good night’s rest.
Friday morning we received a call
from anesthesia, that Ethan’s surgery had been
cancelled due to emergency cases that had come in
the night before. They have rescheduled Ethan’s
surgery for next Friday as the surgeon would like
to do a Hearth Catherization on Tuesday. After reviewing
the echo and chest x-ray again, the surgeon could
see the possibility of opening the valve with out
having to replace it at this time. They will not know
if Ethan will require surgery until the Heart Catherization
is complete so they did keep Ethan on the schedule
for noon on Friday.
Ethan is growing overnight!! Todd
and I (under tummy doctor’s supervision) have
been aggressively increasing his feeds on an hourly
basis, and he is responding well. We are currently
at 32cc’s per hour, which is an increase of
10cc’s from 10days ago. He is much more active
and talking a lot. Ethan has discovered he has a tongue,
and it is out all the time. We even get “puppy
kisses” from him. He is constantly smiling,
and I know he will be giggling soon!!!! I can’t
wait to hear that wonderful sound!!
We thank you for your continued support
and prayers. We will update the website again pending
the decision that is made on Tuesday. God Bless, Todd,
Heather and Ethan.
Last update we forgot to mention
Ethan also met unlce Bob and aunt Cathy for the first
time. Aunt Cathy held him and rocked the little guy
to sleep!! Thanks aunt Cathy and uncle Bob!!
2-11-04 thru 3-31-04 (Todd & Heather)
Well our miracle baby is almost 6months old and weighs
He has been very social since our
last update. He made his first and second trip to
Manteca to visit Nana and E-pa(Todd’s parents).
He met his cousins Jordan, Alexis, Savannah and Jessica
for the very first time, as well as Auntie Karen and
Auntie Laura. He also met friends Jennifer, Jessica,
Tony, Angie and Ann, Erika and Ethan’s girlfriend
Baylee. We had a wonderful visit!!
Ethan also made his way into Grubb&Ellis
(Todd’s office) and PCN(Pharmaceutical Care
Network-Heather’s office). Both offices were
excited to finally meet the little guy!! Todd and
I were so excited to be able to finally introduce
him. Thanks again to both companies for all their
support during our stay in Palo Alto. We could not
have made it without your generosity!
Our little guy has become more and
more active. He his kicking his legs and even gaining
more control with his hands as reaches for his toys
or our faces. He is holding his head up now for about
45seconds, then has to take a little break. Each day
it is becoming stronger and stronger. He is also trying
to roll over. If he is propped up on a pillow, he
can push himself over. The trick is now to figure
out what to do when he makes it to his tummy!! It
is so fun to watch him, as you can tell he is thinking,
“ now what?”. The tubes do not seem to
be hindering this at all!! Keep working son, mommy
and daddy know you can do it!!
On a fun note, Ethan has two bottom
teeth, and they are adorable!! You will get a glimpse
of them in the picture section. We love to make him
smile so we see those cute little teefies!! He actually
handled the first part of teething very well. He did
not have any fevers or the normal things you would
expect, however he had he pointer finger in his mouth
kind of gnawing… this is when we discovered
he first tooth!! Poor guy, he has two teethies and
cannot use them!! We know he will be eating soon enough!!
On a not so fun note, Ethan has been
scheduled for his second surgery to replace the valve
which was put in at birth. The valve needs to be replaced
as it is leaking a little more than what his cardiologist
would like to see, which also maybe hindering Ethan’s
growth. We knew there was some leakage after the first
surgery, but the docs were in hopes Ethan would grow
and his body would be able to handle it. Ethan is
not growing at the rate expected. So we will be traveling
back down to Stanford on April 15th for pre-op, and
surgery is scheduled on the 16th.. This should not
be another eight week journey however, the length
of the stay will depend on Ethan.
We are also trying to add a little
more weight to our boy prior to his surgery. In order
to get some weight on him in a short amount of time,
we had his feeding tube replaced with what is referred
to as a J tube. This bypasses the stomach and goes
directly into his intestines. It seems to be working.
His medications are staying down and we have less
vomiting!! With the tube in place here, we are hoping
Ethan puts on the weight needed before surgery!! We
are pushing him a bit, but the little trooper is keeping
up! We will be updating the site while down at Palo
Alto to keep everyone informed!!
Again many thanks for your thoughts and prayers. Please
check out the pictures featured for this update.
1-15-04 thru 2-10-04 (Todd & Heather) Ethan is now 4months old!! He weighs 9lbs 4oz
and 22 ¼ inches long!! He is now in 0-3months
He has received his 2month immunizations
as well as the first two cycles of Synagis which is
the flu shot for premature or cardiac babies. He handled
it very well, only cried for a minute. What a little
trooper!! He did not even run a fever!!
Ethan is now being more vocal,
“gooing” at his toys or mom and dad!!
He has also discovered he has two hands which have
found their way to his mouth. He has figured out how
to get his little thumb in there and suck on it. This
seems to help his gums as it appears our little man
is teething. We can’t believe our baby boy is
ready for teeth!!
We attempted two ounces of breast
milk mixed in with the Pregestimil, however Ethan
was having more frequent cases of reflux and vomiting,
so we have removed breast milk once again from his
diet. Todd and I are hoping to start the 2ounce cycles
once again, as we know breast milk is the best for
him. Despite the vomiting and reflux, all Ethan’s
doctors are very pleased with his weight gain!!
Heather has finally gotten brave
enough to drive Ethan in the car alone, and have made
several trips to Great Grandma and Grandpa’s
house. She puts the “teddy mirror” in
the back seat and is able to watch him while she is
driving. She does keep her eye on the road so don’t
Ethan continues to pull his
NG tube out every once in a while. We have had to
replace it several times in the past month. Even though
it is not the best thing for Ethan to do, we at least
get to see his cute little face without any tubes
Ethan has had many visits from
his Nana, Epa, Kokie and Papa as well as great grandma
and grandpa. Heather’s sisters and brother and
our nephew A.J. have made many visits as well. Ethan
is soo lucky!!
Although it has taken us a month
to update the website, we will try to keep it updated
at least once a week and will continue to send emails
and the website is updated. Hopefully soon you may
see us in person!! We are able to take Ethan out of
the house to see friends and family just not in public
places, but Heather and Ethan are home during the
day to have visitors and would love for you to come.
We appreciate your continued
prayers and support. Ethan is doing very well. -=New Pics=-
1-6-04 thru 1-14-04 (Todd & Heather) Ethan is getting bigger and stronger every day.
He now weighs 8 pounds 5 ounces and is 21 3/4"
long! He is starting to hold his head up on his own.
Well, he can't hold it real steady but he's doing
pretty good. His head kinda "bobbles" when
he tries to pick it up.
While Ethan was at Standard he was tested for DiGeorge
Syndrome. However we never received the results
of the test. Since Ethan has been home he's been unable
to get his immunizations. If he was positive for DiGeorge,
he there may be some problems giving him his immunizations.
But we did find out that his Digeorge test was negative.
So we can now take him to get his shots.
Ethan was finally able to see his pediatrician for
the first time. Ethan will see him in about a week
and Ethan will get his immunization shots! Woohoo!
After he has his shots, we'll feel more comfortable
about taking him out of the house.
Ethan is starting to reach for things....kinda. He's
not actually reaching out and grabbing but he throws
his arms out sometimes when we put something in front
He's also smiling more and more. We're trying to get
pictures of him smiling but it's not as easy as it
We tried feeding him breast milk but he didn't seem
to take it as well as the progestimil. His stomach
might not be ready for it. He was on breast milk for
about 8 hours and he would cry like he was in pain...possibly
stomach problems. So we put him back on his progestimil
and he's doing just fine. We may try breast milk in
another week or two. -=This weeks pictures=-
12-26-03 thru 1-5-04 (Todd) HAPPY
Ethan was able to visit with my parents the day after
Christmas....in fact, they spent the night with us!
My mom helped Heather get Ethan's room together...set
up the crib, dresser, closet, etc. It looks sooo good!
My parents brought up some shelving for Heather and
I for our Christmas gift. I never thought I'd be so
happy about shelves in my life!!!! LOL My dad was
able to help me put together the shelf and I think
I want another! hehe. My mom was able watch Ethan
that night so Heather and I could get a little rest.
On the 27th, Heather's mom came over to watch Ethan
for a couple hours so we(my mom and dad, Heather,
my sister Gina and future bro-inlaw Joe) could get
some dinner and do a little geocaching. We had a heck
of a time trying to find a cache in Natomas that was
near some canal. We didn't actuall find it because
the terrain was just plain muddy! We'll get it next
time. We had a great time!
Ethan had an eventful New Years Eve. Heather, Ethan,
and I were at home New Years Eve with Taelor, Jesse,
and A.J.(sis-inlaw, bro-inlaw, and nephew). We had
a fairly relaxing evening until about 2am on the 1st
when Ethan decided he didn't want his feeding tube
in his nose anymore! The little booger pulled out
his last tube! Sooooo, we had to go to the emergency
room at Sutter to get new feeding tubes! There was
no real emergency....Ethan could be without his feeding
tube for a couple hours without food or medication.
We were able to get his feeding tube re-inserted and
he was able to eat again. We were all so exhausted
and slept most of the day. But, overall, it was a
good New Years Eve. Our old roomate Zack came to visit
us on New Years as well. Unfortunately, I didn't get
any pictures on New Years Day...I'm slackin!!!! ;)
Ethan weighs 7 pounds 8 ounces! Dr. Davies was very
please with Ethan's progress and had no concerns.
We were seeing her once a week, but since Ethan has
been doing so well with his feeding and is growing,
we now only see Dr. Davies 2 times a month. Ethan
will be seeing his cardiologist and pediatrician within
the next couple days. Hopefully, I'll be able to report
Thanks again for visiting and don't forget to check
out the pics! Click Here!!
12-19-03 thru 12-25-03 (Todd) MERRY CHRISTMAS!!!! Heather, Ethan, and I had a wonderful
Christmas!.....and it's not over just yet! Christmas
Eve was spent at Heather's parents house and Christmas
Day dinner was at our house. My sister Denise, brother-in-law
Simon, Jordan, and Alexis all came over on Christmas
Day too!!! Unfortunately we weren't able to leave
Sacramento to see the Fiore's since Ethan shouldn't
be away from our house for too long. Ethan still needs
to see his primary doctor and get his immunizations.
Soooo, my parents are coming up tomorrow to stay with
us for a couple days and do some geocaching!
Ethan has not seen any of his doctors since last week
so we don't know how much weight he's gained. However,
I can tell you that I've gained about 10 pounds over
Ethan smiled for the first time on the 20th!!! He's
smiled before but only in his sleep. It's hard to
tell if it's a twitch or not. But, on the 20th he
actually smiled at us while he was awake. He's been
doing it more and more as we talk to him. It's so
Well, Ethan pulled out his feeding a couple times
this week! Ugh! It breaks my heart every time we have
to re-insert his feeding tube! I don't blame him for
crying the way he does, I'm sure I'd cry just as much
if someone tried to shove a garden hose up my nose
and push it so far as to go into my stomach! Not only
is it painful for him to have that tube fed through
his nose, but that tube is taped to his little cheek!
So we have to peel the tape off of his cheek and apply
new tape each time. Poor little guy.
Ethan was on 16 cc per hour of Progestimil but has
been gradually bumped up to 18 cc the last couple
days. We have to be able to keep his feedings up with
his weight gain. He was weighed last week at 7 pounds
2 ounces and i'm guessing he'll weigh about 7 pounds
8 ounces next week when he sees the doctor again.
Baby Ethan continues to grow and is as healthy as
a baby could be. Thanks again for all of your thoughts
and prayers. We cannot say thank you enough......so
we'll just keep saying it. Thank you!!! lol
Lot's of love and Merry Christmas! Have a safe and
Happy New Year! -=Pictures=-
(You'll notice that some of the pictures
are extremely dark. I used my digital camcorder to
take the pics without flash....what a mistake!!!!
12-15-03 thru 12-18-03 (Todd & Heather)
Ethan ways 7 pounds 2 ounces as of the 18th!!!
Ethan saw his cardiologist a couple days ago. Dr.
Wright did not have any concerns about Ethan and agreed
that Ethan looks well. Ethan is still retracting a
bit, but is comfortable. Ethan also saw his gastro
intestinal doctor. She agreed that Ethan looks great
too! Since Ethan has been gaining weight, she decided
we up his feeds to 17cc from 16cc per hour. Ethan
still spits up every once in a while, but nothing
to be concerned about since tends to spit up during
or after we hold him Ethan is still on his medication
every day and continues to require oxygen. At this
point, only time will make Ethan healthier. He needs
to gain more weight! :) After the holidays, Dr. Wright
will try and make some changes to Ethan's medications
and oxygen as long as Ethan is gaining weight. We're
all doing well. Here are a few pics:
12-10-03 thru 12-14-03 (Todd) Ethan
is doing great! He's taking his feeds well and is
gaining weight! He is 6 pounds 12 ounces as of the
12th. His next doctor visit is Wednesday and I'm guessing
he'll be almost 7 pounds. Anyone wanna place any bets?
hehe. Heather and I are getting some sleep, but not
as much as we'd like. ;) But I guess that's expected
and we're hangin in there. Tired or not, we're enjoying
every minute of being home with Ethan.
Ethan is still on his oxygen and is still on continuous
feeds. So it's hard to take Ethan out of the house.
It definitely requires 2 people to take Ethan, his
oxygen, and his feeding machine anywhere. Ethan will
be seeing his nurse, occupational therapist, cardiologist,
and gastro intestinal doctor on a weekly basis to
help determine how much longer Ethan will depend on
his equipment and medication. The last few days have
been great....no major issues! -=Pictures=-
December 4th through
the 9th have all been posted today along with pics.
Thanks for visiting!!!!
looked to be struggling a little bit again with his
breathing. We took him to his cardiologist and the
first thing he noticed was the big tube in his nose
and had the same concerns we did. He immediately called
the GI doctor to see if she had a smaller feeding
tube for Ethan......she did. Dr. Wright didn't think
he looked much different from when he left the hospital
other than the feeding tube, so he sent us directly
to Dr. Daveys office.
Dr. Daveys and the nurse(Jennifer) could not believe
that such a big tube was put in Ethans nose! Jennifer
pulled the tube out...along with a big boogie!!!!!!!
There was quite a bit of mucus stuck around that tube!
As soon as that tube was pulled out, and a small one
put it, it was very apparent that Ethan was breathing
sooooo much better! :D
So we're back home with Ethan and all is well. He's
still retracting a little but hopefully it will lessen
as the days go by. We just have to keep Ethan healthy.
OH!!!! Ethan weighs 6 pounds 8 ounces today!! He is
about 20 inches long! Whoop! -=Todays Pics=-
12-8-03 (Todd) We're
finally home!!!! Again!!! lol We were discharged at
5pm today. We were waiting for our health care company
to come by and drop off this new machine that continuously
feeds Ethan. We had to tube feed Ethan a little bit
since the health care company wasn't able to meet
us here at the house when we arrived home.
Ethan is doing ok. I think he's happy to be back home.....as
are we. Just before we were sent home, the nurse changed
Ethan's feeding tube to a larger one. We tried to
tell the nurse that it's way too big but she pretty
much dismissed our concerns. Ethan has been having
a hard enough time breathing being congested, having
a small feeding tube in his nose, and and oxygen canula
under both nostrils! And the nurse just added this
gigantic tube that definitely looks uncomfortable
for Ethan. Oh well......we have an appointment tomorrow
with Dr. Wright and he might be able to address our
Heather's mom and grammy were able to come by tonight
to welcome us back home. We didn't get many pics today,
but we took a couple of Heather's mom and grammy with
Ethan. -=Todays Pics=- 12-7-03 (Todd) So
far so good.......Ethan seems a little better today.
Must be a combination of rest and medication. He should
be discharged tomorrow. There is really no reason
for him to be in the hospital anymore. The nurses
are here giving him medication and changing his diapers
when we're not doing it. We should be all set for
Ethan's heart rate and breathing are much better today.
He must feel more comfortable....I know we do. :D -=Todays Pics=- 12-6-03 (Todd) Ethan
is feeling better today. He was able to get a lot
of sleep since he was up with us all night yesterday...or
I should say we stayed up with him. ;) Ethan is still
retracting a little bit but is doing ok. He's retracting
because of the fluid in his lungs. There isn't really
a way to remove the fluids other than to wait it out.
As long as Ethan stays well, the cells in his lungs
should break down the fluids in his lungs. He still
sounds a little congested and there isn't much we
can do about that either. We just need to keep Ethan
upright at all times. It will help his lungs and his
His heart rate and breathing are still a little fast,
but it's not abnormal for his situation. We'll take
care of him here in the hospital and make sure he
gets plenty of rest.......'cause we need some rest
too! ;) -=Todays Pics=- 12-5-03
Ethan had to be taken to the emergency room early
this morning. He was having problems breathing but
is now doing just fine. We are at Sutter Hospital
here in Sacramento and should be back home by monday.
Updates for December 4th and 5th will be up within
the next couple days. (Todd) Ethan was taken to the emergency
room at Sutter and has been admitted. We took him
in about 2 this morning and we've not had any sleep.
We are exhausted!
We paged Ethan's cardiologist this morning and spoke
with him about Ethan's condition. There were a few
signs we saw in Ethan that might indicate something
is wrong. We look for rapid or irregular breathing,
flaring nostrils, retracting, grunting, blue color,
here for details of these symptoms). Heather and
I were noticing the first 3 of those symptoms. To
be safe, the cardiologist suggested we take Ethan
to the emergency room to take a look at him and make
sure he's ok.
While in the emergency room, the doctor checked his
vitals and was definitely concerned about Ethan's
"retracting". The doctors here don't know
Ethan and only know what we've told them about his
surgery and how Ethan has been recovering. The doctor
at Sutter immediately thought Ethan's symptoms were
a sign of "congestive heart failure".....something
wrong with his heart and fluids may be collecting
in Ethan's lungs. The doctor was scaring the b'jesus
out of us! But we knew it had nothing to do with his
heart....his heart was very strong when he was released
from Stanford. We knew there was something else....maybe
something as simple as congestion preventing his breathing
or something less serious than heart failure.
After about 4 hours, chest x-rays, EKG, and phone
calls to Ethan's cardiologist, we were admitted into
Sutter hospital. Once admitted, we waited for Dr.
Wright(Ethan's cardiologist) to show up to take a
look at Ethan and hopefully help figure out what's
going on. Ethan's heart rate and respitory rate were
up a little and cause for concern.
Dr. Wright did show up later that morning and was
able to look at the X-rays and EKG. He did notice
fluid in the lungs and suspected it was Ethan's formula.....possible
aspiration. He immediately called a GI doctor(gastro
intestinal)he works with(Dr. Daveys), and she was
able to come visit us at the hospital as well. She
confirmed that Ethan has been aspirating, caused by
Ethan's acid reflux. Ethan has been vomiting after
feeding and his formula must be coming up into his
Dr. Daveys recommended that Ethan get continuous feeds
and no more bottle feeding. Ethan refluxes after a
lot of feeding. So, instead of giving him his 47 cc
once every 3 hours, Ethan will be giving a continuous
feed of formula at 16 cc per hour. All this is done
through Ethan's NG(feeding) tube. Also, Ethan has
been taken off Zantac and is now givin Prilosec. This
should help reduce his reflux a bit and prevent him
We'll proly be here through the weekend.
There are only a few pics today. Click
12-4-03 (Todd) Today
we took Ethan to get blood work done. The first lab
we went to did not accept our insurance. Ugh. It's
not easy for one person to carry Ethan with a diaper
bag and oxygen tank.....it's not necessarily easy
for 2 either. We packed our things back in the truck
and went to another lab and Ethan finally had his
blood work done.
Towards the end of the day we noticed Ethan was working
kinda hard to breath.....he didn't look very comfortable.
It sounds like he's a little congested. Apparently
babies only breath through their noses and aren't
too happy when congested. We checked his heart rate
and breaths and both appeared normal. But it was obvious
by looking at his chest that he was breathing pretty
hard. We tried a humidifier but it doesn't seem to
Ethan continues to feed well but he has been getting
tired faster than usual. Proly because he can't breathe
well. Hopefully this humidifier might help clear him
up a little by morning.
We were able to get a few pics today. You can check'm
out here: -=Todays Pics=- 12-3-03 (Todd & Heather)
Ethan slept well last night....which means we
slept a little better as well! :) Ethan seems to be
bottle feeding a little better. Every once in a while
he would take over 20 cc of his Progestimil. He seems
to be taking more than 20cc more often. And he's definitely
feeling hunger pains. He still vomits every once in
a while after feeding, but it doesn't seem like a
lot. Sometimes his vomiting is projectile and it flies!
He's acting like a normal baby more and more each
day. He cries when he's hungry, he cries when his
diapers are dirty, and he cries when he's uncomfortable
or wants to be held.
Our morning was exciting. We gave Ethan his first
bath at home. As Heather picked him up and put him
in a towel to dry him off, he had a bowel movement.........in
Heather's hands. LOL So we put him back in the tub
for a minute and cleaned him up again.
A home health nurse came by today to check on Ethan.
She checked his temperature, weighed him, and measured
him in length. Ethan weighs 6 pounds 1 ounce and is
20 inches long. She talked to us a bit about Ethan's
routines, feeding, and dirty diapers. The nurse stayed
for about an hour and did not have any concerns with
Ethan's health. Ethan is going great!
Ethan pulled out his feeding tube tonight!!! Yikes!
We thought about taking him to the hospital to have
them put the tube in but we ended up doing it. Ethan
didn't like it much, but we had to feed that tube
through his nose and then had to use a stethoscope
to make sure it was in the right place in his stomach.
It's possible that the tube can go into his lungs
instead of his stomach. We used a syringe to push
air through the tube and used the stethoscope on his
stomach to listen for the gurgly sound. If we don't
hear it, it's not in the right place and we have to
adjust the tube. But I think we did it right. We heard
the gurgly sounds. We also used the syringe to pull
out a little milk that was still in his stomach so
we knew it was in the right place.
Ethan had a couple visitors today. Heather's parents
came over for a little bit to say hi and our friend
Melissa came over as well.
We have been receiving so much help from everybody
and we've been wanting to make individual recognition
of everyone's prayers, thoughts, and gifts on this
site. However, we thought it would be best to just
say a big THANK YOU
to everyone! And we'll hopefully be able to see or
at least talk to everyone over the next couple months.
God bless you all!!! -=Todays Pics=-
12-2-03 (Todd) Our
first night with Ethan was pretty tiring. It's very
different to not have nurses around. Heather and I
take turns at night watching Ethan so we can get a
couple hours sleep. We don't always take turns. If
there is a break in the evening, Heather and I can
both take a quick nap.
He's fed every 3 hours and is bottle fed first. He
feeds for about 10 to 15 minutets by bottle and then
the rest is tube fed. Tube feeding takes about 20
to 30 minutes. By the time Ethan is fed and comfortable.
There's only about another hour and a half to 2 hours
before it's feeding time again.
He's still taking 47 cc every 3 hours......10 to 30
cc by bottle and the rest is tube fed. He still vomits
a little after eating. We're still not exactly sure
why. I'm sure it's a combination of things....medications,
too much moving around during feeds, and 47cc is just
a lot for Ethan to take at one time. As he gets bigger
and stronger, he should be able to tolerate these
things a little better.
My parents were able to visit this morning with us.
It was nice being able to relax in our own house with
family. Later in the evening, some of Heather's family
came to visit. Auntie Taelor was able to hold Ethan
for the first time.
We weren't able to take many pics today, but will
be making up for it over the next few days as Heather,
Ethan, and I settle in.
Ethan met with his cardiologist today. Dr. Wright
was very pleased with Ethans repair. Ethan will probably
be following up with Dr. Wright on a weekly basis.
Ethan is going to have some blood work done tomorrow
to make sure he continues to stay healthy.
Ethan looks great and we're soooo happy to be home! -=Todays Pics=- 12-1-03
We finally made it! There were hold-ups
throughout the day. The main hold-up was Ethan's portable
oxygen. It was ordered at 8 this morning and we were
supposed to have it within a couple hours so we could
start our way home. Apparently there were some mis-communications
between the hospital and the company bringing the
oxygen. The oxygen didn't arrive until after 2pm!.
By the time we said our goodbyes and packed the truck,
it was 5pm!!!! We left the hostpital and went directly
into Bay Area traffic. The drive usually takes a little
over 2 hours and it took us over 3 hours. The roads
were wet, traffice was dense, and we were kinda nervous
and anxious getting Ethan home. We are now home and
Not only do we have to adjust to Ethans special needs(7
different medications, tube feeding, and oxygen),
but we still have to unpack our house! We moved in
days before Ethan was born. We made our first 2 mortgage
payments on a home we hadn't lived in for nearly 2
Well, we're home safely and Ethan has his first visit
with his cardiologist tomorrow.
We will continue to update the site every day with
news and pics of Ethan's progress. We would like to
put pics up of Ethan without tubes attached to him.
Ethan weighs 2770 grams today.......6 pounds 1 ounce!!!! -=Todays Pics=-
11-30-03 (Todd & Heather)
Our second night with Ethan didn't' seem as hectic
as the first. I think we were able to get 4 hours
of continuous sleep!! Woohoo! heh.
The nurse taught us how to insert Ethan's feeding
tube. She pulled the feeding tube out from Ethan's
nose and handed us a new tube to put back in his nose.
Poor little guy was squirming and squealing as we
were pushing that tube in his nose, down his throat,
and into his stomach. Once it's in, he's comfortable.
Hopefully we won't have to worry about inserting the
tube when we're home. It's possible, but doesn't seem
likely that Ethan will pull it all the way out. He
grabs at his face quite a bit and does get a hold
of the tube. However he never has pulled it all the
Ethan weighs 2685 grams.........5 pounds 14 ounces!!!!
He's still vomiting after feeding every once in a
while, but it doesn't seem to be anything abnormal,
and it certainly isn't hindering his growth. You grow
At 7pm tonight, Ethan was moved to yet another room!
Unfortunately it's not private and we're sharing the
room with another young woman and her newborn. Heather
and I couldn't believe they switched us rooms again....the
night before Ethan is discharged. Oh well. We checked
out of our hotel and our bags are packed. Hopefully
tomorrow night I'll be updating this site with something
about, "WE'RE HOME!!!". :D -=TODAYS PICS=-
11-29-03 (Todd) Heather
and I spent our first night with Ethan......and we
didn't get much sleep. We were up every couple hours
taking turns with Ethan. It's amazing how early a
baby can be spoiled. :) We fed Ethan, burped him,
gave him his meds, and changed his diapers all night
long. I don't think we slept more than 2 continuous
hours.. This is gonna be interesting when we get him
home. ;) We can't wait!!!
My parents were finally able to come down and see
Ethan now that he's healthy. Unfortunately, my parents
have been sick the past few weeks and did not want
to chance getting Ethan sick by seeing him before
they were absolutely sure they were healthy.
The doctor came around today and assured us we are
being discharged on Monday morning. The paperwork
has already been started and should be signed for
discharge by 7:30am on Monday. We're keeping our fingers
Ethan weighed 2600 grams today!!! He is 5 pounds 11
ounces!!!!! Woot!!! He continues to bottle feed well
and is keeping most of it down.
Be sure and check out todays
pics! Only 2 more days until we're home. And I
will continue to update this site as we take Ethan
11-28-03 (Todd & Heather)
Ethan weighs 2550 grams today!!! That's just
shy of 5 pounds 10 ounces! He's still gaining weight.
He didn't vomit much at all today. The only time he
vomited was when he had to take his iron...ack! Otherwise,
he didn't spit up at all. He seems to be digesting
the formula well.
The lactation consultant came by again today and helped
out with Ethan's breast feeding. He did ok. The instincts
are there, but he lacks the size and strength to get
a good latch. It won't be long before he's on breast
We tried taking Ethan's oxygen off today but we weren't
able to leave it off for long. When he's awake, he's
fine. But when he goes to sleep his oxygen saturation
drop pretty quick. So, we're back on oxygen. More
than likely, he will be going home with it.
Ethan graduated today!!! We moved to a private room
where there are no nurses in the room. Heather and
I take care of him as if we're at home. And there
are NO monitors!!! Whoop!! Ethan is our only monitor.
We now have to rely on Ethan to tell us how he's doing.
It's kinda nice....it's quiet...and there are only
3 of us in this room. There is one small couch and
a recliner. We haven't quite figured out sleeping
arrangements yet. The one who sleeps on the couch
may sleep the best, but the person who sleeps in the
recliner can hold Ethan all night. We'll proly switch
We continue to receive so much support from family
and friends(including PCN and Grubb & Ellis).
We can't say thank you enough! Words can't explain
how thankful we are...THANK YOU! -=Todays Pics=-
11-27-03 (Todd & Heather)
Ethan, Heather, and I had a wonderful Thanksgiving.
Heather's parents, siblings, nephew, and grandparents
were able to bring Thanksgiving to us here at the
Ethan was passed around just like the mashed potatoes.
Ethan is still vomitting a couple times a day after
feeds. But it's usually because we're holding him
and moving him around a little too much. He doesn't
have any problems when we're not around. The nurses
feed him while we're away and he doesn't usually vomit.
However he did have an acid reflux test which tests
the acidity in his stomach. The results on the 25th
cambe back positive for high acid levels. This would
explain some of his vomitting. But he has been taking
Zantac since the 25th to lower the acid levels in
his stomach and prevent him from vomitting. But the
Zantac doesn't prevent him from vomitting when we're
shaking him like a can of spray paint. ;)
Ethan lost a little weight again today. He weighed
2420 grams this morning. Which is about 5 pounds 5
ounces. Hopefully he can begin to keep his food down
so he can grow! He continues to do ok with his bottle
feeds. He takes anywhere from 5 to 20 ounces and usually
takes more in the evenings.
Heather and I gave Ethan a bath today and he wasn't
too happy about it. With all the vomitting he's been
doing lately, he's gonna get a bath whether he likes
it or not! :) We took a few pics of him in his little
tub. You can check'm out in the picture section.
Thanks again for all you thoughts and prayers. And
thanks for visiting Ethan's site. Heather, Ethan,
and I hope you all had a Happy Thanksgiving!! -=TODAYS PICS=-
11-26-03 (Todd & Heather)
Ethan breast fed for the
first time today! We weren't expecting him to catch
on right away but he did pretty good for the first
time. The lactation consultant came by and showed
us how to teach Ethan to breast feed. Ethan was rooting
a lot and latched on briefly but was not able to hold
on for too long. He's still a little weak. We'll keep
trying every day and see if he can progress. As long
as he gains weight and gets a little stronger, he
should be able to breast feed when the time comes.
Speaking of weight, Ethan lost a few grams. He weighed
about 2480 grams. He lost about 40 grams but isn't
abnormal. He's weighed each day between 4am and 7am.
He feeds every 3 hours at 3, 6, 9, and 12. So if he's
is weighed between 6 and 7am, he may have already
fed and will weigh more than if he was weighed between
4 and 6am. I'm not sure exactly at what time he's
weighed, but it could explain the difference in weight
between days. So today he weighs 5 pounds 7.5 ounces.
We're still set for Monday. But we did hear that it's
still possible we could be discharged on Saturday
or Sunday. We won't get our hearts set on it. As far
as we know, we'll be home by Monday!
Have a Happy Thanksgiving!!!! -=TODAYS PICS=-
11-25-03 (Todd) It's
been confirmed that Ethan is being discharged on Monday
December 1st. Now that everyone is on the same page(sacramento
and stanford), I'm pretty sure this is it. Ethan will
be home Monday and he will see his cardiologist the
next day on Tuesday. It's probably better this way
as we'll be sure that Ethan is absolutely ready to
be home with us......and that we'll be ready to be
home with him.
Ethan gained weight today! He weighs 2525 grams...100
more grams than yesterday. There are about 28 grams
in an ounce so he gained about 3 ounces. The little
guy is 5 pounds 9oz....1 pound more than his birth
weight 7 weeks ago today.
Heather and I will be meeting with a lactation consultant
tomorrow so that Ethan can start breast feeding!!!!
We can't weight till he actually gets the good stuff!!!
However, even if he does breast feed well, it will
not be his only source of nutrition. There are 30
percent more calories in his formula than breast milk.
So he will be on his regular feeds of formula and
then be giving breast milk in addition. Once he's
strong enough to feed enough breast milk on his own
to sustain growth, he will then be taken off the formula.
We'll wait and see.
Unfortunately, we do not have any pics today. Heather
and I had to be in Sacramento for Heathers doctor
appointment. We've gathered so many things here in
Palo Alto that we took advantage of going back to
Sacramento by taking some of our personal things back
home. Now we have plenty of room in the truck for
Ethan! ;) We'll make up for the missed pics over the
next couple of days.
11-24-03 (Todd & Heather)
We have good news and some not so good news.
The not so good news is that we will not be home for
Thanksgiving. There is nothing wrong with Ethan that
would prevent him from going home. There happens to
be a scheduling conflict with Ethan's cardiologist
in Sacramento. The doctors here would release Ethan
on Wednesday if Ethan's cardiologist in Sacramento
was available for a same day visit. It turns out we
are a little late in trying to have Ethan's cardiologist
ready on Wednesday. And his office closed on Friday
as well. The next available appointment in Sacramento
is Tuesday, December 2nd. There is a slim chance that
Ethan will be released on Friday. However he may not
be released until Monday. At this point, we're just
waiting to see if we can get Ethan in to his cardiologist
around the day we arrive in Sacramento. So it looks
like Heather and I are doing Thanksgiving at the Peking
Duck here in Palo Alto! LOL. KFC isn't looking too
bad either.....it's almost like Turkey. LOL
Ok, now for the good news. Ethan is doing great!!!
He gained about an ounce and is now 2425 grams. About
5 pounds 5.5 ounces! His bottle feedings continue
to progress. Ethan was measured today but forgot exactly
how long he's grown. If I'm not mistaken, he's about
20 inches now...maybe a little longer. I'll try and
get his exact length tomorrow!
Ethan had a chest X-ray and an ultra sound and they
both look good. The doctors assure us that his heart
is functioning as good as can be expected. Way to
go little man!
11-23-03 (Todd & Heather)
Ethan weighs 2395 grams....which is about 5 lbs
4.5 oz! He's still gaining weight. Heather and I were
able to give him his different medications which Ethan
takes orally. We simply take a syringe and just squirt
the meds directly in his mouth. He took them better
than I thought he would. He made some funny faces
when he tasted them, which gave us the impression
that the meds don't taste very good. ;)
Heather's dad was able to bottle feed Ethan today.
He took a few ounces, which we thought he'd do. He
doesn't feed much during the day. We ended up feeding
the rest through his feeding tube.
You can see from todays pics that Ethan got a sponge
bath from his mommy. :D He didn't get too mad about
it.....a few grunts here and there, but he never cried!
He's been such a trooper!!!
You'll also notice from todays pics, that Heather's
parents came to visit! They spent most of the day
We spoke with the doctors this morning and asked a
few questions about Ethan coming home by Thanksgiving.
At this time, there is nothing, and should be nothing,
preventing us from having Ethan home on Wednesday!!!!
We can't wait to have Ethan home!!!! -=TODAYS PICS=-
11-22-03 (Todd & Heather)
Ethan fed well today! He took 35cc at one time!!!
Heather and I fed him 19cc the day before. So this
is a big jump. However he doesn't feed like this all
the time. He does his best feeding in the evening.
We give him 39cc every three hours and he took 35
at once! So we tube fed him the other 4 ounces. He's
holding it down well. All of his vitals are good as
well. The oxygen was turned off for a bit to see how
he'd do without it. He's fine when he's awake. But
when he is in a deep sleep, he is a little too relaxed
and doesn't breath as strong as he should. Usually
we just wake him up a little and his oxygen saturation
levels go back up. So, he's still on a little oxygen
today and he's doing great!!!
We had another visitor today. Our friend Melissa came
down and we had a lot of fun! Melissa was able to
hold Ethan and feed him too! Be sure and check out
11-21-03 (Todd & Heather)
Finally!!!......We've moved upstairs! :) Ethan
is in a room with 3 other babies. There are 2 or 3
nurses in the room that watch over them. When Heather
and I are not around, the nurses take care of Ethan.....bottle
feed him, tube feed him, burp him, hold him, rock
him, give him his medications etc. However, when Heather
and I are there, the nurses teach us/have us take
care of Ethan with little assistance. We want to be
as ready as possible to take Ethan home and be able
to give him the care he needs. We're learning how
to give him medications orally AND with a syringe
and needle! Ouch!! We've been doing fairly well so
far. The goal is to have Ethan home Wednesday the
26th......the day before Thanksgiving.
At this time, there is nothing preventing us from
taking Ethan home in the next few days. His X-rays
continue to show no fluids and his heart looks as
strong as ever. He's feeding as good as can be expected.
In fact, he took 19cc from the bottle yesterday!!!!!
He actually fed until he was somewhat satisfied. It
was amazing! We cannot believe how far he has come.
It's kinda funny how excited we get from watching
him do the normal things that babies do. :) When he
finished the 19cc from the bottle, we fed him the
other 20cc from his NG tube. All we have to do to
feed him with the tube is put the formula in a large
syringe without the piece that's used to compress
and push the fluids out of the syringe. We connect
the tube from his nose to the syringe and hold it
6 inches above his head and let gravity pull the formula
from the syringe, through the tube and into his stomach.
It usually takes 15 to 20 minutes until it all drips
into his stomach. And that's it....not too difficult.
Ethan was getting 26cc of Progestimil every 2 hours.
He's now getting 39cc every 3 hours. It's the same
amount if you average it every hour, however now he's
getting 13cc more at one feeding. And he goes without
another feeding an hour longer. We're really trying
to get him to feel hunger so he really latches onto
the bottle when he's ready to feed next. So far so
Ethan maintained his weight from yesterday. He's still
about 5 pounds and 4 ounces........almost a pound
more than his birth weight. We'd like him to gain
weight every day but we realize that may be a lot
to ask. As long as he's not losing weight, we are
as happy as can be! Way to go Ethan!!!! -=TODAYS PICS=-
11-20-03 (Todd and Heather)
Ethan hasn't moved upstairs yet. He's still in
the CVICU and doing well. He weighs 5 pounds 4 ounces!!!!
He might be 5 1/2 pounds by Thanksgiving. We'll see!
Ethan definitely has a voice now. When he opens his
mouth to cry....he actually cries! It's sooo cute.
We were a little worried that we'd be taking him home
without a voice and not being able to hear him cry
if he was uncomfortable or in pain. But we definitely
hear him today!
Ethan had a Barium Swallow test today. Occupational
Therapy was a little concerned that he may be aspirating
- milk may be leaking into his lungs when he swallows.
He wasn't showing any signs or symptoms of aspiration.
But since his voice has been taking so long to come
back, it could mean his vocal cords in his throat
are a little weak and not working the way they should
and possibly allowing fluid to leak into his lungs.
Ethan had to swallow this dense compound called Barium.
It was fed to him through a bottle which he swallowed
without a problem. The doctors took an X-ray video
from a profile shot of Ethans head and upper chest.
We could clearly see the Barium going directly into
his stomach and not his lungs. Whoop!! It's still
possible he may aspirate in the future but as of now,
at the rate he's swallowing, he is not aspirating.
Ethan's vitals continue to stay strong and he looks
very healthy. He is still on a little oxygen, but
they will be taking him off in a couple days. They
wanna make sure he comes home with only a feeding
tube and nothing else. We're still shootin for homecoming
by Thanksgiving and so far, it looks good. -=TODAYS
and Heather) Ethan is not
coming home just yet..... they have decided to finish
his stay in the ICU at Stanford. Instead of moving
from ICU to ICU, we'll just go home from here early
next week. We will be moved upstairs to the 3rd floor
possibly sometime today where he will finish his stay
During one of his bottle feedings today, Ethan took
10cc's. Later on in the day, he took the entire bottle
which is 26cc's. His feedings are getting better and
better each time. He is working really hard to go
home on bottle feedings instead of tube feedings.
Keep working little Buddy, you're doing a great job.
Ethan has fully recovered from his surgery and all
vitals continue to look really good. The only medications
Ethan is on are the diuretics, Digoxin and Reglan.
He will be on Digoxin for a while, so Todd and I will
learn how to give his meds through the tube if in
fact Ethan comes home with the NG tube. Hopefully
Ethan will not need the diuretics and reglan for too
much longer. The doctors are hoping to take him off
these meds within the next couple of days.
Our goal was to be home by Thanksgiving,
and so far we are on the right track. Ethan should
be home by early next week. Don't foget to check todays
Yesterday, we did not take any pictures. However,
Joe(Heather's dad) took some pictures during his visit
and emailed them to us. Pics
are up for the 18th! Thanks Joe!!!
11-18-03 (Heather) I
can't believe it, but our little boy is 6 weeks old
today! AND we are coming home! The plan is to be at
Sutter Memorial in Sacramento by Thursday. The docs
here at Stanford are coordinating with the NICU/CVICU
docs in Sacramento for the transfer. If the transfer
cannot be made by Thursday, it will be done on Monday
as the docs do not want to make any transfers without
the appropriate staff on hand. Can you believe it,
we're coming home!! Todd and I are soo excited. We
don't know how long our stay at Sutter will be, but
at least we'll be home.
Ethan did very well today on his feeds, still taking
26cc's every 2 hours on the even hour. Ethan took
3cc's from the bottle while "Papa" (my Dad)
worked with Occupational therapy. We are very pleased
with Ethan's progress nippling. Ethan continues to
grow. He is now 2.34 kilos (5lbs 2oz). YAHOO!!!
You'll notice there aren't any pictures today. Todd
had to go into work and was gone almost all day and
he usually is the one taking all the pictures while
I'm holding Ethan. hehe. ;) However, I was gonna take
the pictures today but Todd mistakenly took the memory
card for the camera. Sooooooo, no pics today. We'll
have pics tomorrow for sure!
11-17-03 (Todd & Heather)
Ethan moved again. He was moved back to the room
he was in before. He had another great day. He is
still adjusting to his feeds being givin all at one
time. He usually vomits just after he's givin his
full 26 cc dose. Well, that's not entirely true. I
should say that he vomits after he receives his full
26 cc dose and we've been handling him. If he's left
in his bouncy chair receiving his feeds, he does just
fine. But when we get our greedy little hands on him,
we sometimes tend not to keep him as vertical as he
should. If his head isn't higher than his stomach
after a feed......he vomits. It will take him some
time for his stomach to tolerate the milk all at once.
He is fed every 2 hours on the even hour. And we are
able to bottle feed him 2 times a day for no more
than 10 minutes or 10cc...whichever comes first. During
his first bottle feeding, he took 6 cc while Occupational
Therapy was with us. This evening he took another
5 cc. He's doing pretty good. He just needs to build
enough stamina to take enough milk for him to gain
weight. So, for now, he'll be tube feeding and bottle
Speaking of gaining weight.....Ethan is 5 lbs 1 oz
Be sure and check todays pics. We were able to get
some good pics of him feeding. CLICK
11-16-03 (Todd & Heather)
Ethan had his first real bath today! The nurses
took a few polaroids for us! He's been getting little
sponge baths in his crib but they bathed him in the
sink today. Yeah.....the sink! LOL. Well, actually,
they bathed him in a pink plastic tub in the sink.
Ethan is no longer on continuous feeds. He was on
13cc an hour of Progestamil. Now, they're giving him
26 cc all at once every 2 hours. We're trying to get
him familiar with actual feedings. Hopefully he'll
feed from the bottle better now once he feels what
hunger is like.
Ethan no longer has any lines in his vains! He had
a "PIC" line in his leg that ran clear up
to his hip area. That line has been removed since
Ethan no longer is receiving any meds intravenously.
All of his meds are taken orally(through the feeding
tube)! The only tubes/wires attached to Ethan are
his heart and respitory monitors, blood pressure monitor(leg
cuff), oxygen, oxygen saturation monitor, and feeding
tube! Ethan's health continues to progress.
Ethan did not gain any weight today. He is still about
4 lbs 14 oz. As long as he's not losing weight, we're
one day closer to getting him home!
In todays pics, you'll notice that the pictures of
Ethan's first bath are of low quality. It's because
I took a digital photo of the polaroid. I wasn't sure
if it would work, but it did. Take a look! -=TODAYS
11-15-03 (Heather) Ethan
had another awesome day! We did get a big surprise
when we walked in his room, and he was not there!!
He was moved back to the room he was originally in
after surgery. We were kind of scared thinking something
had happened, but it turns out Ethan is requiring
less attention and was placed in the room with other
babies that require less attention. So we are back
to familiar territory.
Ethan still continues to take 13cc's per hour of Progestamil,
and is doing well. (He was asleep for most of the
day, so we were not able to work with the bottle).
He weighed 2220 grams which is about 4lbs 14ouncec,so
he is gaining weight!!
We briefly spoke with Dr. Reddy
today, and he confirmed that Ethan is doing very well.
Heart rate has been a little on the high side, but
not because anything is wrong.Heart function is great!
As Ethan continues to grow, his heart rate will slow
down. Dr.Reddy is very pleased with Ethan's progress.
Auntie Gina and Uncle Joe came
down to visit Ethan. Its their first time seeing Ethan
so healthy! They were really happy to see him!!
Don't forget to check todays
11-14-03 (Todd & Heather)
No issues today! Ethan is 100% better! He looks
great. All of his vitals are where they're supposed
to be and Ethan was alert as ever.
Still no definite news on when Ethan will be home.
There is a very high chance(almost positive) that
Ethan will be transferring to Sutter in Sacramento
where he'll stay for a week or so to continue his
bottle feeding. There still is a small chance that
we may bring Ethan straight home instead of going
to Sutter. We'll just take it one day at a time and
cross that bridge when we get there.
Physical Therapy came by and Ethan did his "exercises".
He stretched and bent his limbs and we were able to
get him to move his head around on his own. So far
Ethan took a couple CCs from the bottle while Occupational
Therapy came by. He was, again, too tired to take
much more. It seems he goes into a deep sleep just
before OT gets there.
Ethan weighed 2180 grams today! That's 4lbs 13oz!!!
I bet he'll reach 5lbs by Monday!
Heather's Mom and Grammy came down for a visit today.
You can see'm in todays pics! Click
11-13-03 (Todd & Heather)
Ethan did much better today! After taking some
medication last night, Ethan is breathing much easier.
He looked to have more energy today and was very alert.
The doctors did look at an X-ray of Ethan's chest
and did notice a little fluids but were not concerned
at all. Ethan is showing no signs of problems. He
only shows signs of a premature baby recovering from
heart surgery and is completely normal.
Ethan has been taken off the Portagen and been givin
Pregestamil. The fats in it are more easily digested
and absorbed than breast milk. It's just one step
closer to Ethan being able to take moms milk.
Occupational Therapy came by again today (as usual)
and Ethan was able to take another 3cc. He was a little
tired around feeding time so he wasn't able to take
much more. The Pregestamil apparently does NOT taste
good at all. So we may be able to expect Ethan to
feed a little better when on mom's milk. Unfortunately
he won't be able to have moms milk until the doctors
feel certain that fluids will not accumulate in his
chest again. It could be weeks.
Ethan gained another 20 grams today. He now weighs
4 pounds 12 ounces! Four ounces more than his birth
weight! Way to go little buddy!
11-12-03 (Todd & Heather)
Ethan had an okay day. He was extremely tired.
He has been "retracting" all day. We can
see that he is working very hard to breathe. The doctors
aren't exactly sure what the cause is just yet. We've
seen Ethan retract before, when he had fluids in his
chest that would not allow his lungs to fully expand.
Ethan is not in any pain what-so-ever. He just looked
exhausted at times. You can see from todays pics that
he is still very alert.
Still no word on when Ethan will be moving "upstairs"
or back home. We have a feeling that we may not have
Ethan home by next week. We'll keep our hopes up.
Ethan's heart beat is a little on the high side. It's
not affecting him in any way, but the doctors will
be doing some testing to try and find out the cause.
Ethan's blood pressure and body temperature continue
to be stable.
Occupational Therapy came by again today to help Ethan
with his bottle feeding. He took 4 cc today and had
no problems keeping it down! He proly would have been
able to drink more but he was sooo tired today.
Physical Therapy came by today as well. We were taught
how to help Ethan with his stretching. He hasn't been
moving around much since his surgery and needs help
keeping his muscles loose. We help Ethan extend his
arms and legs, lift his arms up over his head, turn
his head, twist his hips and bend his ankles. He actually
seems to like all his stretching. :)
Hopefully the doctors will figure out why Ethan is
working so hard to breathe. Otherwise, Ethan is doing
Todays is Heather's Grandmothers's
birthday. Happy birthday Grammy!!!!
11-11-03 (Todd & Heather)
Today, Ethan took another 3cc of Portagen orally.
He seemed to take the bottle well. How exciting!!!
The occupational therapist was very pleased. We can't
wait to try again tomorrow!
We spoke with the surgeon again today and he said
that Ethan will be home by the end of next week. Not
home meaning Sutter in Sacramento, but home at our
house!!! WOW!!!! He will be coming home with his feeding
tube and possibly his oxygen. More than likely he'll
be fed mom's milk through his feeding tube when he
gets home. And he'll possibly be breast feeding in
addition to his tube feedings. Soon, Heather and I
will be shown how to take care of Ethan while on his
Ethan will be moved "upstairs" within a
couple days before he is discharged from the hospital.
But for now, we are still on the 2nd floor in the
CVICU(cardiovascular intensive care unit).
Heathers parents and siblings came to visit again
today. Auntie Shana was finally able to hold Ethan
for the first time!!!
Ethan's health continues to progress. He shows no
signs or symptoms of any heart problems. His X-rays,
echo's, and EKG's confirm it! I can't believe we will
have Ethan home for Thanksgiving, as we have a lot
to be thankful for!!
Don't forget to check today's pics!!! Click
11-10-03 (Todd & Heather)
Ethan has been sleeping a very well lately. He
appears to be very comfortable. He is being fed 13cc
per hour of the Portagen. More calories have been
added to his diet to try and help him gain some weight.
Ethan did not gain any weight since yesterday.
Occupational Therapy will be coming by every day at
4pm to help with oral feeding. Today he he took about
3cc from a bottle. He tired out pretty quick. He's
not used to feeding from the bottle just yet. But
we'll get him there.
Ethan still needs a little help with oxygen when he's
sleeping. You'll notice in todays pics that an oxygen
mask is laying next to him in his bed. If his oxygen
saturation levels drop, we can move the mask closer
to his face so he can get the oxygen. His saturation
levels go up immediately.
There was talk of Ethan moving "upstairs"
today but it did not happen. It may happen tomorrow.
The doctors aren't in any hurry to move him. If it's
not an emergency, they get around to it when they
get around to it. ;)
11-09-03 (Todd) Ethan
continues to do well. Since he's been off of the oxygen,
his oxygen saturation levels dip a little bit....usually
when he's sleeping or resting. Positioning an oxygen
mask near his face brings his saturation levels up
immediately. And then he'll be fine for the most part.
Although sometimes it seems that he is just in a deep
rest when his saturation levels drop and we can simply
prop Ethan in a more upright position or simply pick
him up and his saturation levels go back up again.
It's really not much of an issue at this point, and
we'll probably see this issue disappear the more he
Speaking of growing, Ethan gained 20 grams in the
last 24 hours. He's almost back up to his birth weight.
His original birth weight is 2043 grams(about 4 lbs
8 oz). Today he is 2002 grams. At one point he was
as small as 4 pounds. So, he's doing pretty good in
the growth department. Heather and I will try and
update his weight as often as possible. The more we
see an upward trend in weight, the sooner Ethan will
His heart rate, blood pressure, breathing, and core
body temperature continue to be stable! Way to go
Ethan had a few more visitors today. Heather's siblings,
mom, and grandparents came down today. We were able
to get a few pics of them with Ethan today.
11-08-03 (Heather) Ethan
had another AWESOME day!! He is still breathing on
his own, oxygen saturation levels are were they need
to be. His blood pressure and heart rate have been
great too! His heart rate seems a little high, but
the doctors aren't concerned about it. Ethan does
not show any signs of uncomfort or stress. The smaller
the baby, the higher the heart rate.
.He is such a strong little guy! He even rolled himself
over today. I don't think he knows he is only a month
old! I was able to hold him in the upright position
today for the first time. We had to allow his chest
to heal for a while before laying directly on it.
Ethan was not too impressed with that position, but
I am sure it will just take time to get used to. Ethan's
feeds have been increased to 13cc's per hour and is
handling this well. Hopefully he will be on Portagen
for only a few more days, and then on my milk. Docs
just want to make sure the fluids are cleared up before
we can start mamma's milk again.
Ethan had quite a few visitors today. Friends Melissa
and Nick came to visit. Later in the evening Auntie
Denise and friend Trudi came to visit as well. We
had a lot of fun!
Click here for todays pics!
11-07-03 (Todd & Heather)
Heather and I made it to the hospital today just
in time to watch Ethan have his oxygen tube removed!
The oxygen was turned off for a few hours before they
actually removed the tubes. Since Ethan was able to
keep his oxygen saturation levels up, they freed him
from one more tube/cable. AND Ethan's arterial line
from his right arm was removed(the one used to monitor
his blood pressure). Now both of his hands are free!
He's looking more and more like a "normal"
baby everyday....now more than ever.
He only has the "pic" line and feeding tube.
You'll proly notice the purple wires, but those are
just there to monitor his heart rate. Oh, and they
put a cuff on his leg to monitor his blood pressure.
It's similar to a cuff used on an adults arm to measure
Ethan has a new nurse every 12 hours and since yesterday,
each nurse has said, "Have you heard that Ethan
may be moving to the 3rd floor on Monday?". So
I'm guessing Ethan may be moving to the 3rd floor
on Monday. But I'm just guessing. ;)
Ethan's X-rays continue to look good! There is very
little fluid in his chest if any. The doctor is not
too concerned with the fluids. He said that the fluids
will eventually dry up on their own, or at least they
Ethan's heart rate is a little on the high side, but
nothing to be really concerned about. His blood pressure
continues to be solid. He also continues to hold his
own core body temperature.
Don't forget to check out today's pics! :D
One more thing....tomorrow is Heather's Mom's birthday(11/8)!
Happy Birthday Katie!!!
11-06-03 (Todd & Heather)
Ethan moved into his "big boy" bed today!
Now there is room for his bouncy seat...which Heather's
parents brought today.
The fluids in Ethan's chest have pretty much dried
up! So, his chest tube was removed! He'll continue
to get X-rays every morning to watch his chest from
collecting fluids again. The doctor is pleased with
Ethan's progress and believes he'll do much better
without the tubes and wires in him. You'll notice
in Ethan's pictures, he has a splint on his right
arm. He has a catheter in his arm to monitor his blood
pressure. The splint is there to help keep the catheter
in his arm. Ethan's blood pressure has been pretty
solid for a couple weeks and that catheter should
come out tomorrow! The only line he'll have left in
him is what's called a "pic" line. It's
a central line used for administering his medications.
The medication that's being used to help dry up the
fluids will be discontinued very soon.....assuming
the fluids are actually drying up.
The doctor also mentioned that Ethan may be moving
"upstairs" Monday. Which is the 3rd floor
cardiac ward! This will be another graduation for
him! It isn't for sure yet, but it is a sign Ethan
is recovering well.
So for now, the main concern is nutrition. Once Ethan
is feeding from a bottle and/or from Heather on his
own and is showing trend of steady weight gain, he'll
be transferred to Sutter Hospital in Sacramento to
continue his occupational therapy. There is a slim
chance he may be back in Sacramento by Thanksgiving,
but it's not for sure. We'll be taking it one day
at a time.
Heather's parents came down to visit! They were able
to bring his bouncy seat so he can sit up and look
around. He seemed to enjoy it.
Be sure to check out today's pics! Enjoy!
11-05-03 (Todd & Heather)
Another good day for Ethan!
He seems to be sleeping a lot better than usual. I
think he's been more comfortable.
He's being fed as much as he can be fed for his size(4
pounds). He's taking the food very well and has the
diapers to prove it.
Occupational Therapy came by again today. Ethan is
beginning to take the bottle. He's not necessarily
taking the milk on his own yet. He suckles a little
bit and then slowly swallows the milk. And he can't
really suckle too long without getting too tired.
We just have to build up his endurance so he's comfortably
drinking the amount he needs to grow. We'll try again
tomorrow and see how he does.
Ethan's fluids seem to have come to a stand still.....almost!
He was losing fluids at about 150cc per day! In the
last 24 hours, he's only lost about 10cc!!!! Absolutely
amazing!! Tomorrow, there's a good chance that the
chest tube may be removed from his chest permanently!
Whoop! This should be the last of Ethan's major hurdles
to recovery. It's all nourishment after that! He's
still being given a little oxygen and is still on
his heart medication, but we believe these things
will correct themselves after Ethan is healthy. We
gotta bulk him up! He'll be weighed daily to monitor
Yesterday, Physical Therapy suggested we try putting
Ethan in a "bouncy chair" soon. Ethan is
in a small bed and a chair will not fit, so he may
be moved into a bigger crib so that it can accommodate
the "bouncy chair".
Ethan never ceases to amaze us. Keep up the good work
11-04-03 (Todd & Heather)
Ethan moved rooms today. He was moved to a room
that is much more quiet. His former roommate was having
a hard time and was extremely vocal. Ethan had a hard
time relaxing. He's able to sleep a little better
Occupational Therapy came by to help Ethan feed with
a bottle. However he was a little uncooperative. He
was soooo tired and decided he'd rather sleep. We
will be trying to get him to feed with a bottle a
little each day.
Physical Therapy came by again today to help Ethan
stretch his limbs. He looked like he was having a
good time. He didn't complain once. They suggested
we try and put him in a more upright position with
a "bouncy chair". We will try that soon
and see how he likes it.
Ethan is maxed out on his protein intake right now
so they decided to increase his calories today. It
was a little much for him at first. He vomited a couple
times but was able to take it well later in the day.
The fluids in Ethans chest seem to be draining a lot
less! We're not sure how much longer it will be before
the fluids stop completely, but it's definitely slowing
down. As long as it's slowing, the doctors won't have
to perform surgery to close those ducts.
You'll notice from today's pics that Ethan is taking
his "binky" fairly well. We're now able
to calm him down when he's a little upset. It's a
little difficult sometimes to get it in his mouth,
but once it's in there, he starts suckling.
Good job Ethan! Another great day!
11-03-03 (Todd & Heather)
Physical Therapy came by today to help Ethan with
some stretching. He is in his bed in the fetal position
most of the day and they wanted to make sure Ethan's
arms and legs aren't getting too stiff. So they came
by and extended his arms and legs for a bit.
He did very well most of the day with his chest tube
out. However, by the end of the day today, it was
obvious he was starting to work a little harder to
breathe. The docs did an X-ray this evening and saw
some fluids, so they re-inserted the chest tube and
drained his chest. This time they left the chest tube
in. We could see right away that Ethan looked much
Ethan is no longer taking his Digoxin through an IV,
He now receives it orally. He continues to do well
with his 12cc an hour of Portagen, even though he
did vomit a couple of times today.
Heathers parents(Kokee & Papa) came down this
evening to visit. Be sure to check todays pics!
Mommy and Daddy are proud of you Ethan! We are amazed
with your strength and spunk. Keep fighting! We love
11-02-03 (Todd & Heather)
Ethan didn't have too many problems through the night.
However, this morning, he did have an episode or two
where his heart would beat irregularly. Since the
chest tube came out, the hole closed up and some fluids
were retained in his chest. The doctors were pretty
sure it was the fluids in his chest that caused his
irregular heart beat. To be safe, they put him back
on his Digoxin to help regulate his heart. They left
the fluids in his chest until about 4pm. Throughout
the morning he didn't look to be in any stress with
him retaining the fluids. As the day went on, the
fluids in his chest were constricting his lungs and
they were not able to fully expand. It was visible
that Ethan was wearing himself out breathing. Before
it got any worse, they inserted a chest tube to remove
the fluids. But they did not leave the chest tube
in. They removed about 32cc of fluids(about an ounce),
removed the tube, and closed the hole. It was immediately
noticeable that Ethan was no longer working too hard
to breath. He was much more alert and relaxed. Ethans
been receiving medication to help "dry up"
the fluids in his chest. So, for now, the doctor is
leaving the chest tube out to see if Ethan can absorb
and/or drain the fluids himself. As of 11pm tonight,
he has been doing extremely well. He will have X-rays
a couple of times a day to watch for fluids in his
chest. The fluids accumulate so slowly that there
will be noticeable symptoms well ahead of time for
the doctors to insert another tube to relieve his
chest of the fluids.
Ethan is up to a rate of 12cc per hour of the Portagen.
He did vomit once early this morning but was ok. We
were seeing signs of withdrawals of the morphine,
and vomiting is one of those symptoms. The other signs
are the shivers or shakes and sneezing. And we've
seen him do all of the above. But he's not showing
these symptoms on a constant basis. We've seen him
do one or 2 of those things once throughout the entire
day. Ethan is not in any kind of stress or discomfort.
Heather was able to hold Ethan again tonight. You'll
be able to see from todays pics. Enjoy!
11-01-03 (Todd & Heather) Well, we had a few
more steps forward today! Ethan is no longer on Digoxin,
the medication to regulate his heart rate. His heart
is fine on it's own! Whoop whoop! He has also discontinued
his regular doses of morphine and he's been looking
very comfortable. He doesn't look to be stressed from
any noticeable pain.
Ethan was on TPN which provided most of his nutrients
but is no longer taking it. Since his rate of Portagen
has increased, he's been getting the nutrition he
needs. (The Portagen is givin through the feeding
tube in his stomach while the TPN was givin through
Ethan had an IV in his left arm which was recently
taken out because it was leaking. His arm had a little
brace which kept his arm from bending and not interrupting
the IV. However he managed to bend his arm....so no
more IV. The IV was used to give him blood whenever
necessary. But he no longer has any lines that can
take blood and the doctors decided not to add another
IV in his arm since he's been doing so well. They
will add another IV if they need to.
Not only did his IV come out a little early, but his
chest tube "slipped" out too! Heather and
I were very concerned about it at first but the nurse
and doctor reassured us that Ethan would be ok without
the tube for now.
Early this morning(about 12:30am), the nurse noticed
that Ethan's bed was wet. She thought that he just
wet the bed, but then noticed his chest tube was not
in his chest. She immediately informed the doctor,
but he did not have the chest tube put back in. Since
his fluids have decreased over the last day or so,
and he didn't look to be in any kind of immediate
stress, they decided to just cover the hole with a
dressing. It can keep the hole open and the dressing
will absorb some of the fluids, while the rest of
the fluids may leak out of the dressing and into his
bed. They change the dressing every couple hours and
weigh the cloth and dressing to measure the fluids.
Ethan has been having Xrays every so often today to
look for any fluids building up in his chest. But,
so far, most of the fluids are draining and there
is very little in his chest....which is great! It's
been 24 hours since the tube slipped out and he is
still without the chest tube. The doctors will call
us if the tube needs to be put back in his chest.
If the tube is put back in, Ethan will be givin morphine
and a local anesthetic around the hole in his chest.
According to the doctor, its a very easy and a fairly
harmless procedure. Hopefully Ethans fluids will decrease
enough to not have to put the chest tube back in.
But if it has to be done, there shouldn't be anything
to worry about.
Ethan had a few visitors today! Heathers parents,
siblings, and friends!
Don't forget to check todays pics!
10-31-03 (Todd & Heather) Happy first Halloween
Ethan! We can't wait to take ya trick or treating!!
Ethan has finally been getting some rest! As you can
see from todays pics....there aren't many. He's been
eating(tube feeding) and sleeping all day. Usually
we like to tickle and talk to him but we didn't want
to wake him much today. Hopefully he'll be very awake
tomorrow so we can hold him more.
We met with the doctors today and had a "parent
conference" to discuss the gameplan. Ethan's
fluids have noticeably decreased today! However, it's
only one day. We've seen this before, but hopefully
THIS is a sign he's finally starting to heal. Ethan
has not had any morphine for 2 days! He's been a lil
trooper. He's also being givin 10cc per hour of the
Portagen....10 times the rate yesterday morning. He's
been taking it well and proving it by leaving surprises
in his diapers.
Ethan's doctors believe he can be transferred to Sutter
in Sacramento in 3 to 4 weeks, as long as his health
continues to progress. After Ethan has fully recovered
from his surgery, he will still be underweight and
will require therapy to ensure proper growth. We can't
say for sure when he'll actually be home with us,
but it will be awesome to have him that much closer
to home. The doctors are pleased with his progress
as are we! Good job Ethan!
In todays pics, you'll also see a link for a short
video of Ethan. I'll try and get some better videos
tomorrow. Hope you enjoy!
10-30-03 (Todd & Heather) Ethan graduated today!
He's been sharing a large room for patients that come
out of the operating room. He's been moved to an adjacent
room for patients that have been progressing. Woohoo!
His heart rate, blood pressure, oxygen saturation,
and breaths per minute continue to be stable. However
his fluids continue to drain from his chest at a steady
rate. Hopefully we will see the fluds slow soon. His
feeding has been increased, which may have something
to do with the different color of his fluids. He was
on 1cc of Portagen an hour. Today it has been increased
1 cc every hour for 12 hours. So far he's taking it
well. Maybe the additional feeding will give his body
the necessary strength to close his draining ducts.
Only time will tell.
He's very alert and is constantly looking around,
wondering when the next "poke" is coming.
He sleeps with one eye open. ;) He still doesn't have
a voice, however we hear a small squeak now and then.
He had a few visitors today. Kokee, Papa(Heathers
parents) and Grammy Booker came down for a few hours
to visit. They were able to hold him for their first
time!! Check todays pics!
10-29-03 (Todd)Well, today was another
good day. You'll probably have noticed that this "News"
section starts back on the 26th.......the day we started
to notice a promissing, upward trend in Ethan's health.
Up until the 26th, Ethans health was an up and down
rollercoster(but for the most part, good). We've had
4 straight days of forward progress, but I can't say
that Ethan is only going to get well from here on
out. Prior to the 26th, I didn't have the energy,
nor the creativity to even think about building this
site. But now that I've started, I won't stop. I just
don't want family and friends to be confused if Ethan
has a not-so-great day.
Ethan still has a tube in his chest that continues
to drain fluids at a steady rate. The fluid that drains
after surgery is normal, however, the draining should
be slowing down. It's just a waiting game right now,
constantly replacing fluids that are being lost. Ethan
is tolerating the fluids draining and being replaced
as can be seen in the pictures. But there is a chance
that he may have to have surgery again to have the
ducts close that aren't closing themselves. We just
don't want him to have to "go under" again
for surgery. If so, he will have to be "intubated"
(on ventilation) again. So it will be a small set
back. They will not re-open his chest, but will go
in from his side under his arm. Ugh! Ethan has been
working so hard to get where he is now. We don't want
him going through it again. Please pray for Ethan,
that the fluids from his chest subside.
OK, I'm sorry for the bad news first, but I want to
end this post on a good note. Ethan IS doing great
today! He had his stitches removed! He also had a
yellow tube put in his nose and down to his stomach
so he can continue the feeding of Portigen. He's not
yet back on mom's milk yet. So his little mouth is
tube free! Woohoo!
You can probably see from some of his pictures that
he is crying....but not outloud. He doesn't have his
voice yet. When he crys, we just here little hissing
sounds. It sooo cute. Heather and I can't wait to
here is little voice. The breathing tubes that were
in his throat seperates the vocal chords and it takes
a few days for his vocal chords to heal. So for now,
we'll enjoy the silence. :)
Heather and I were able to hold Ethan again! Take
a look at todays pics! You'll also notice that Heather's
good friend Melissa came down for a visit and was
able to hold Ethan as well!!!
I know not everyone can come all the way to Stanford
to visit, so hopefully this site helps you feel closer
than you are. : ). Heather and I can't thank you all
enough for praying for our son! It always puts a smile
on our faces to look at the "Guestbook"
and see who's visited this site. Thank you all soooo
All our love,
Todd, Heather, and baby Ethan
was another AWESOME day!! Ethan's heart rate continues
to stay stable.Ethan is breathing well over the ventilator,
so the docs decided to extibate(take him off the ventilator)!
They took him off around 2pm this afternoon and he
is doing well without it! As you can see in today's
pictures there is still a little oxygen tube in his
nose, but it is supplying very little to him! This
is soo exciting, we get to see his whole mouth!
Yesterday I held Ethan over his bed just for a second,
but today with out the ventilator in his mouth I was
able to hold him in my arms! What an AWESOME feeling!!
I was able to hold my son for the first time in his
life! I had been trying to be sooo patient, waiting
and praying this day would come, when I would finally
hold my baby boy!! I love you Ethan!!
10-27-03 (Todd)Heather holds
Ethan for the first time! Check todays
Another good day! Ethan looks very comfortable. He
is holding his body temperature very well. I'm excited
to say that he is able to relieve himself regularly.
I never thought I'd be excited about something like
He WAS being fed mom's milk with a feeding tube in
his mouth directly into his stomach. However, it was
causing his body to produce more fluids from his chest
tube. Sooo, they are feeding him a supplement called
Portigen which is already broken down for him. It
will take a little time before he can take mom's milk
again. He's also being givin TPN(total parenteral
nutrition) for all his vitamins and minerals.
Ethan is still on a ventilator, but not necessarily
because he needs it. They don't want him working too
hard right now and are slowly wheening him off the
ventilator. They also want to make sure his breaths
alone are able to provide the necessary oxygen in
his blood. It gives him X number of breaths per minute.
Right now the ventilator is giving him 26 breaths
per minute and Ethan breathes another 10 to 30 on
top of that. So he's getting 26+ breaths per minute.
He should be off the ventilator when the ventilator
is down to 12 breathes.
He's still on a little morphine every now and then,
depending on the amount of pain he looks like he's
He's also on Digoxin, a medication that helps strengthen
the heart muscle, enabling it to pump more efficiently.
It has helped keep his heart regular.
10-26-03 (Todd)Ethan had a good day today. His heart
rate has been very irregular the last couple days
but today he's much better. Heart rate is stable,
blood pressure is up, and his color is a lot better
too. Hopefully we have more days like this.
format has changed a little and we've added a few different pages.
Feel free to check'm out!