|
|
10/7/06
(click image for a larger
view)
On Saturday, October 7th, the Fifth
Annual Share Walk for Remembrance and Hope was
held at the Muny in Forest Park. Benjamin's parent,
family and friends created the team "Footprints
for Ben" and took the 1 mile path. The
memorial service with the reading of the babies names
and balloon release was a very emotional and healing
experience for all of us. We shared a few
tears and hugs, as well as many laughs and great
company as we enjoyed the beautiful weather and
awesome scenery as we casually strolled around the
Muny. Everyone was invited back to Teri & Vince's
house to enjoy some delicious food and more laughs and
hugs. Thanks to everyone that participated and those
that couldn't make it but were with us in spirit! If
you are interested in participating next year, please
let Teri know so she can add you to the list.
For more information:
For Fox 2 News coverage
of the Share Walk click
here
5/28/06
Benjamin's Album (pictures
taken by Darcie from The Jeremy Project) - click
here to view
5/21/06
Special Thanks
Our hospital friends are very
special to Teri and I. We have shared with them our
greatest joy and our greatest sorrow. They have given
unconditional love and compassion to Benjamin, Teri and
I throughout our journey. For that, we cannot thank you
enough.
We would also like to thank our
family and friends. Their love and support is very
important to us. Although we can support and comfort
each other, we cannot lessen the intensity of the other’s
pain. Know that as we grieve it is ok to cry and feel
sad. Eventually, we will reach a time that we can
remember this experience, understand it, accept it, and
then look forward to the future.
5/15/06
Thank you to everyone that has been praying for
Benjamin, Vince and Teri. Your love and support has
meant so much to all of us. It is with much
sadness and a heavy heart that we are imparting
this bad news.
We lost Benjamin Friday night
(May 12th), he left us without pain and in
our arms holding our fingers. We had our family with
us Thursday night and Friday morning which meant so
much to all three of us.
Benjamin had a chromosomal
abnormality called Trisomy 18 (also known as Edward's
Syndrome). Which means he had 3 chromosome #18s,
instead of just 2. This is the worst chromosomal
abnormality and 95% of babies with this
abnormality are miscarried before their due
date. For those babies that survive through their due
date, most are still born. For those that survive
birth, most only live a day or two. For those babies
that survive more than a few days, they don't see
adolescence. They are severely mentally retarded, have
limited motor skills which means they can't swallow
or eat, walk or talk and have a lot of
medical problems and live most of their lives in and
out of hospitals. Being a preemie added further
complications for Benjamin.
Your thoughts and prayers were
answered by giving Benjamin the strength to give us
time to love and hold him for many more days that we
should have had. For that we can never thank you
enough!
We are going to have a memorial
service in the Chapel at St. Johns Mercy Medical
Center, on Saturday, May 20, 2006 at 2:00 pm; all are
welcome to attend.
|
|
Click on the picture thumbnails below for a larger
picture.
Just use your web browser's back button to return to this page.
Day 17 
Friday - 5/12/06
|
Day 16
Thursday - 5/11/06
|
Day 15
Wednesday - 5/10/06
The hospital staff took the following
4 pictures, they are smaller pictures...
|
Day 14
Tuesday - 5/9/06
Benjamin enjoyed Mom holding him for 2-1/2 hours this morning
and Dad for 2-1/2 hours tonight (sorry you aren't going to get
much sleep Dad). He has been having small episodes of heart rate
drops and/or oxygen saturation drops, but he responds well to
the adjustments the nurses make. He measured 14 inches last
night when they weighed him (he must be stretching out more than
he did when he was born).
Since we were there so late, they will weigh him early tomorrow.
|
Day 13
Monday - 5/8/06
The hospital staff took the following
3 pictures, they are smaller pictures...
Benjamin had another awesome day
... Dad got to hold him for the first time for 3 hours! He
slept most of the time, but Mom was so proud to see her two boys
together. He is now getting 2 ml of Mom's milk
every 4 hours (5 ml is about a teaspoon). Benjamin now
weighs 1 lb 9 oz - keep going buddy, you are almost back up to
your birth weight. Mom made Benjamin a new hat and blanket
last night and finished it today.
|
Day 12
Sunday - 5/7/06
The hospital staff took the following 2
pictures, they are smaller pictures...
Today was a totally awesome day for
all three of us. Benjamin had a birthday card for Mom and a
picture of him after his first bath (which it looks like he
enjoyed very much). Although it made Mom cry, they were very
happy tears. His billirubin levels were down to 1.4, so he
doesn't need the light any more (but he may need it again later). Mom
got to hold him today for 3 hours (her best birthday present
ever!). Benjamin enjoyed it so much, he slept most of the time
and drooled on Mom (just like Dad does when she rubs his head). Benjamin
is still processing Mom's milk and is 1 lb 7 ounces (back up
from 1 lb 6.9 oz). Dad took our first family portrait - he is
pretty good at taking his own picture. Dad's wedding band is a
little too big on Benjamin's arm, but he liked wearing it just
as much as Dad does.
HAPPY
BIRTHDAY
TERI
!
|
Day 11
Saturday - 5/6/06
Benjamin had
a good day today. His lung x-ray shows his right lung is still
inflating and his stats were good throughout the night and day.
They started him back on Mom's milk at noon. When they checked his
stomach before his 4pm feeding, he had digested all of
it (and he pooped again!). Mom got to hold him for 1-1/2 hours
again today. He seems so happy to be there, especially since he
can see and hear Dad the whole time. He was holding Mom's
thumb or Dad's finger most of the time. We tried to get a
picture with Vince's wedding ring on his arm, but it turned out
fuzzy - we will try again tomorrow.
|
Day 10
Friday - 5/5/06
The hospital staff took the following
picture, it is a smaller picture...
Benjamin had another good day today. His billirubin level
this morning was 2.6, they dropped his light to the low setting
(he was on high). His right lung still sounds good. They will
take another x-ray in the morning to make sure it is still fully
inflating. He spent a fairly restful day, so Mom was able to
hold him for 1-1/2 hours today. We maintained his temperature
and all his stats were great while he was with Mom. Mom got to
change his diaper twice and take his temperature again. They
took the IV out of his foot.
It was so hard watching him cry silently and without tears. Mom
rubbed his head and it seemed to help him calm down (just like
it works with Dad!)
|
Day 9
Thursday - 5/4/06
Benjamin had a much better day
today. His right lung is re-inflating and the fluid in his lungs
is clear and back to normal levels. His blood is also back to
normal levels. He held Mom's finger for a few minutes this
morning, and he held Dad's pinky finger this evening
(yes, he has Dad wrapped around HIS little finger already!). Mom
got to take his temperature (under his arm) and change his
diaper tonight (my fingers seem way too big to be changing that
little bitty diaper!). Mom and Dad each got to kiss the top of
his head (which he will probably hate once he gets older). If he
continues to do well, they may try to start feeding him Mom's
milk tomorrow or Saturday.
|
Day 8
Wednesday - 5/3/06
Benjamin had a really bad morning.
Around 11:15 am he had a bad episode. They had just stabilized
him when Mom and Uncle Paulie walked in. His right lung is still
not fully inflated, but it is starting to move air and is
responding well to the therapy. They had to give him more blood
today (because of the extra labs they have been running) - the
large wrapping on his foot is the IV for giving him blood. His
stats have been looking good since they had him stabilized,
almost like he doesn't even realize he had a problem. They are
temporarily suspending feeding him milk (may startup again
tomorrow). On the bright side, this morning his billirubin
levels were at 3.3 (down from 4.5) and he gained .8 oz (up to 1
lb 7.8 oz).
When Mom & Dad left, he was almost back to the oxygen and
respiration levels from earlier today.
We are hoping for a much better day tomorrow.
|
Day 7
Tuesday - 5/2/06
Ben had a great day today - which
made Mom & Dad's day totally awesome. Around 8:15pm, Mom
held him for 1-1/2 hours and he did extremely well and we
maintain his temperature! Last night he graduated into an
isolette - this is much better for his temperature and
minimizing sounds. It also means he isn't as critical as he was.
Although when they moved him, his ventilator hose got dislodged
again. He seemed to take it into stride and tolerated having it
put back in. He stabilized very quickly back to the settings
they had before it came loose again. He also gained back
an ounce (1 lb 7 oz) and his billirubin levels dropped to 4.5
(from 6.3). They put a feeding tube through his mouth into his
stomach and he is taking 1 ml of Mom's milk every 4 hours. His
system responded very good to the milk. Dad is so proud of his
boy ... he pooped twice before Mom held him and he pooped
again while Mom was holding him.
Dad was singing "My boy pooped" all the way to the
car!
Dad also touched him for the first time by helping Mom hold him.
|
Day 6
Monday - 5/1/06
We had a tough day today,
Benjamin's billirubin levels were unchanged, so I couldn't hold
him today. Then around 8:45 am, the little wiggle worm worked
his ventilator tube out of position. They decided to let him try
breathing on his own since it was already out, but he only
lasted 10 minutes before his dioxin levels were too high
(meaning he wasn't exhaling enough air). They put the tube back
in, but the stress to him was such that the ventilator was doing
most of his breathing today. They have him "confined"
in a papoose thing - they are suppose to like it, but he seemed
to be mad when he couldn't kick and stretch like he has been.
Hopefully tomorrow will be a better day!
|
Day 5
Sunday - 4/30/06
Mom gets to hold Benjamin for
almost an hour while Dad practices his shutter bug skills.
Without a flash, it is really hard to get a non-fuzzy picture.
His eyes were open almost the whole time watching and listening
to Dad.
Benjamin is responding good to "kangarooing with Mom".
Mom is pretty happy too.
This is a technique called Kangaroo therapy. My body temperature
will regulate his, my breathing helps to regulate his breathing,
and he can smell me, hear me, and feel my heart beat like he did
inside.
Teri and Vince...
2 special pictures for you!
As sweet baby Benjamin is in my heart and prayers and I know he
is in all our hearts and prayers.
Just click the thumbnail to get to the larger pictures and right
click large picture to save them to your hard drive. Thanks for
letting me create this web page for you. I look forward to
seeing the new pictures every evening so that I can add them to
the web page for you! - Love you and Big hugs to you, Brigette
|
Day 4
Saturday -
4/29/06
Another Good Day. They removed the
line in his belly button since his blood counts and levels have
stabilized. They continue to tweak his ventilator and oxygen
levels as his lungs are maturing.
|
Day 3
Friday - 4/28/06
They put a larger jaundice light on him
and by the afternoon, it was working and dropping his bilirubin
levels
(which is why everything is blue) - I'm not using a flash in the
NICU.
|
Day 2
Thursday -
4/27/06
This was taken right after they did an
evaluation (which they do every 4 hours) and he was not a happy
camper. I was able to calm him somewhat by talking to him but we
still can't touch him.
|
Day 1
(9 hours after birth)
Wednesday - 4/26/06
They have a jaundice spot light on him to
help with the jaundice until his liver is working better.
|
Day 1
(40 minutes after birth)
Wednesday - 4/26/06
The diaper that he is swimming in is
the size of a panty liner!
|
Week
1 Slideshow Photo Album |
Week 2 Slideshow Photo Album |
|
Slideshow
Photo Album Instructions:
A new window will pop up when
you click on any of the Weekly Slideshow Album links above. Once the
Weekly Slideshow Photo Album opens up, just
click on the top left photo. This first photo will then go into full size
viewing mode. Once you are in full size viewing
mode just use the far right "red" arrow that is
located at the top right of the screen to flip through all the
photos inside the Weekly Slideshow Photo Album.
|
|
|
Last web page update was at 12:30 am on 5/28/06
Note to Visitors:
If you have any problems with the pictures loading please
contact Teri, Vince, or myself
via email and I will make sure the problem is fixed right away.
- Aunt Brigette
The URL address for this
page is...
http://www.egyptian.net/~stubits/babyben.html
|
A special note to Teri & Vince...
Thank you for letting me build this web page for the both of you
and Benjamin
and for sharing the photos with us all.
If I was asked to do it again for anyone I would do it in a
heart beat!
I love you,
Brigette
The
Littlest Angel Poem
all images and content on this
web page and that is linked to this web page is copyrighted ©
by their respected owners.
|
