Tommy Loves to get mail!
My grandson Alex Samuel was born April 1 at 27 weeks, weight 1 lb 11 oz. He's had his
share of As and Bs, but basically he is doing OK and no weighs over 3 lbs. My daughter
Dana being able to kangaroo him a lot helps. We look forward to him coming home. Preemies
are very, very special.
Thanks for your great page. My baby daughter Fern was born 2 days ago (01:17 on
26.5.96) at 26 weeks and 2lbs 2oz. I feel guilty for taking solace in the misfortune of
others, but I note that compared to most she is really quite large! During the birth her
mother Monika couldn't have any pethadine and couldn't face an epidural, so I gave her
poetry instead. The next day when we were struggling for a name Monika asked about one of
the poems I had read - it was Fern Hill by Dylan Thomas - and there we were!
Fern's grandma says that a fern is small and delicate and beautiful but grows just as
well in the shade as it does in the sunlight. I have saved your page onto the lap top and
will take it into the hospital now. They are in the NICU of the Whittington Hospital,
North London and I have never known such joy as when she opens her eyes at the sound of my
voice and looks in my direction. She even holds my little finger. I must go straight back
there now. When I am there, I feel useless and want to go home - yet the moment I leave I
am desperate to return..
Thanks for your communication. I wish you health and happiness,
Steven, Monika and Fern Buttling-Smith
My story is much like yours. Ashley Danielle Gordon was born at 23 weeks gestation on
April 21, 1995 weighing in at 1lb 2 ounces. Her due date was August 16, 1995. I was
diagnosed with Toxemia 5 days before Ashley was taken. Toxemia is a condition where the
body becomes very swollen and usually shows up in the 9th month of pregnancy, but in my
case it was much sooner. I entered the hospital on a Monday. By Wednesday the doctor said
I would be able to go home the next day for bed rest. Thursday came and he said that I had
worsened and the baby would be take by C-section within 48 hours. There was no way I could
handle this news. I knew it was way too early for her to be born. I could not handle the
fact that my baby would die. At 2:00 a.m. Friday morning I awoke with difficulty
breathing. The doctor said it was time that they take the baby. I was devastated. I was
taken to the OR at 9:00 and by 9:49 Ashley was born.P> My mother went into the OR with
me (because my husband gets sqemish). She said that when they pulled her out, she made two
little "peeps". The doctor said that was a good sign. Before she was born, the
neonatologists told me she had a 50/50 chance of survival and asked if we wanted
everything done to save her. Of course we said yes.
Ashley was put on a ventilator called an Ossolator. This machine kept her breathing,
but at the same time, caused damage to her lungs. Her skin was translucent. You could see
her veins clearly and almost make out her internal organs. Ashley was put under "No
Stim" which means absolutely NO stimulation (except from nurses to take blood and
doctors to examine).P> This meant that we could not touch our little girl. After a
week, she was taken off "No Stim" and we got to touch her for the first time.
Premature babies have very thin skin and organs. Ashley's stomach became very swollen and
purple. The doctor said that they had to do exploratory surgery. They told me that she may
not survive the surgery, but she definitely would not survive if the surgery was not done.
They found a hole the size around of a writing pen in her stomach. The doctor sewed her up
and said she would be fine. That was the first "scare".
The second was when she was 3 weeks old and weighed only 14.5 ounces (she had lost her
fluid weight from birth). Her lungs had become very damaged by the ossolator and they
began to bleed. The nurses were constantly suctioning her lungs to remove the blood so she
could receive oxygen. Our usual neonatologist was out of town this night so the doctor on
call called us at 3:00 in the morning to tell us she would not live another 5 hours. We
immediately rushed to the hospital to be with her when she died. The doctor told us there
was nothing else they could do for her. She was on the highest settings on the ossolator
and she was on 100% oxygen and she was still de-sating around 70 to 75%. He told us that
she would have to turn herself around now. My mother was there and she started reading
directly out of the Bible (I do not go to church and I am not very religious, but I do
believe in god). Thirty minutes later, the nurse started to pull some blood for a blood
gas and she said, "The color looks better". God once again gave us a miracle,
she was going to live for a lot more than five hours!s!!!
We never really had another bad "scare" like those first two, but Ashley did
have to have a PDA (Paitent Ductous Artery) surgery to close an artery that didn't close
after birth. That was a breeze. It was a ten minute surgery that had basically no
complications. Ashley's only other real problem was trying to nipple feed. She had been
tube fed for the first three months of her life. But she was getting bigger and they
wanted to prepare her to go home. This took about a month and, after 4 months and three
days, she was released.
We have had nothing but joy in our life since Ashley was born. Although we went through
a lot, God was there with his miracles to show us that there is always hope. God showed
his final miracle at Ashley's 1 year checkup. She is an absolutely normal baby. We have
had no complications, not even with her lungs. The doctors told us before she was born
that even if she did survive, she would have very severe complications. I'm glad they were
wrong. Today Ashley is 13 months old and she just got her first tooth. She doesn't crawl
yet, but she is pulling herself up on anything that is her size. She eats like a little
pig and she sleeps through the night
I just wanted to share another success story to help give hope for those that are going
through the never-ending hospital visits and the anguish of premature birth. It seems like
it will never end, but it does and now that we're home, I can hardly remember my baby's
I'm a mother of 2 preemie babies , one is 6 now and a great child. she weighed 4lbs
14inches Now I'm a new Mommy again of a 35wk preemie but she was what you'd call Fetal
Retarded Growth she weighed 2lbs 10oz. 143/4inches long. I had gone in to the high risk
clinic for a normal prenatal visit there the doctor said the baby had to come that day he
said the baby stopped growing and if the baby didn't come today the baby can be in a lot
of drainage , my placenta prematured so latter that night I gave birth to a healthy baby
girl she was out of the NICU at 2weeks old. Kassandra Colleen is my miracle Baby
I would like to tell the story of Kassandra.. she is a 35wk preemie, weighing 2lbs 10oz.
14 inches long. She was what is called a Fetal Retard Growth , basically my placenta
prematured and she quit growing ..
I had gone in for an office visit and the doctor said the baby is in serious danger and
needs to come out, so they sent me to Labor and Delivery the baby was breech so they
turned her and began the process of labor nothing happened over several hours so they
wheeled me into surgery for a C-Section.
I delivered a healthy baby to everyone's surprise... the only thing she needed to do
was eat on her own and maintain her body temp ...
She was discharged at 2weeks old.
Kassandra is a real live baby doll :)
My name is Jim Tomes, my wife Trish and I are the grandparents of a 24 weeker. His name is
Jerod. Jerod's mother was unable to care for Jerod and has turned over custody of him to
us. We are very interested in knowing more about preemies. I would give you my E-Mail
address but I'm a real beginner at this interney stuff and will have to get the help of a
friend to get that to you but rest assured, I will. Jerod was born Nov. 1, 1995 at
Memorial Mission Hospital in Asheville NC. He was 1 lb. 9 oz. at birth. He lost weight to
1 lb. 2 oz. before beginning his trip home. He came home with us in mid Feb. I'll be back
in touch when I can provide you an E-Mail address. Thanks for this page. It's great.at.t..
My name is Cindy, mom of twins Eric and Aaron. The twins are ex-26 weekers and have many
problems secondary to prematurity. I enjoyed my visit to your web page and would like to
invite you to our new home page at: http://user.aol.com/cynthia679/bissell.html
The Bissell Home Page
Hi Tommy (and Tommy's parents):
What an experience! Thank you for sharing it. My own son (full term) spent his first night
in a level 3 NICU (having been transferred from the suburban hospital where he was born).
Fortunately for us his difficulty adjusting to life on the outside lasted only a few
hours. It was a very scary time for us, and it only lasted one day. After things settled
down, I felt almost guilty having the healthiest baby in the ward.
We had the extra complication of an older child who was very upset that the suburban
hospital wouldn't let her see her new brother (the hospital with the level 3 NICU did let
her hold him the following day). My mother in law was wonderful taking care of her (my
husband had been born 9 weeks prematurely in the early 60's, so she of any of our
relatives understood what we were going through).
I'm glad you are doing so well.
I just read your sons story on my friends Internet and I will be going on line shortly.
My son was also born very prematurely and I felt like I was reading our story when I read
yours. Spencer was born August 17, 1994 at 24 weeks gestation and he weighed 1 lb 7 oz and
was 12 inches long. Like your son, he was hospitalized for 87 days in the NICU. He came
home November 12, 1994.
I am curious about his development and will write back to you soon.
We are doctors that help take care of premature babies like you. We're so happy to see
that you are doing well. We work in a NICU in Pittsburgh, PA and love to hear wonderful
stories like yours. We are sooooo! impressed with the quality of your web site (are you
sure that your Mom and Dad didn't help??!!). We especially liked your contagious giggle
and we're anxious to share your story with all of our friends.
Keep up the good work and stay healthy!
Bob Cicco and Sharon Galli
My daughter was born 4-24-96 eleven weeks early at 2 lbs 5 oz. Her name is Jessica Ann and
she has done extremely well. She is no longer in the ventilator or IV and only requires
minimum oxygen. Her only problem currently is occasional bouts with brady spells, I was
wondering if any other parents have had preemies with these problems and if they outgrew
them. Jessica is now 2lbs 8 oz and eating 21cc every 3 hours. Your page has been very
helpful, thank you.
Loved seeing your pictures! I make clothing for premature babies like you and have for
almost 11 years now. Recently I created a catalog and would like to share it with more
parents. My oldest birth child was born at 31 weeks and my youngest at 34 wks. They were
both big for their age and healthy (after weeks of bed rest for me!). Hope you'll tell all
your newest friends about me! I am just beginning to work on adding my catalog to my home
page but will send one to anyone who e mails me and requests it..
Hope you are well. We are the proud parents of Savannah Alisyn Middleton, who was born
8/13/95 at 25 weeks. She weighed 1 pound, 11 ounces. At one week of age, she came down
with Spinal Meningitis (E-Coli) and had an extremely hard time getting over that. She was
on the Sensormedic ventilator for 7 days at birth and then was placed on a conventional
vent after that. She was extubated at two months of age (Friday the 13th) (a GOOD day for
us!). Shortly after that she was diagnosed with stage 3 ROP and underwent several laser
surgeries on both of her eyes. They went well, but the Dr. informed us that the left eye's
retina was threatening to detach. With Christmas coming near, and Savannah getting better,
we were looking forward to taking her home, when the Dr. called us and said she had a
really bad bug this time (serratia). She underwent numerous transfusions. People were
coming in from all over to donate blood for her. God was looking after her and on the
fourth day she was eating again! Then, the eye Dr. decided he needed to do a victrectomy
and place a gas bubble in between the lens and the retina. This was to be done on the 21st
of December. All hopes of getting her home for Christmas were dashed! However, she came
through the surgery very well, and on December 23rd, we brought our little girl home!
The last few months have been spent getting to know our little girl and trying to be on
time to all the Dr. visits. All is going well, with the exception of her eyes. As a result
of the victrectomy, there has been a cataract form on the back of the lens. The Dr. tells
us that the lens will have to be removed and that we will need to insert a contact lens
each day for her.
All of this would not have been possible were it not for the help and support of the
Doctors and Staff at Valley Baptist Medical Center in Harlingen, Texas.
\Bob and Laurell Middleton
A great web-site and helpful to know that many other parents have survived the ICN (as
well as their babies!). My son Ian deserves a page all his own and someday we will compose
one. But right now our time is spent in the ICN with him. He was born in October, 1995 and
is already 6 months old. He was only 5 weeks early but has other disabilities. His main
one being lung problems. He is still on a ventilator and will go home with one (he has a
trach). But he is a happy guy! And I'm looking forward to his toddler hood as well. Take
care and best of luck!!! P> Ian Newberry's Mom
I'm so happy that things have so far worked out as well for you as they have for my two
boys. All 3 of you are real fighters. Both of them were incredibly premature (13 and 15
weeks early). Reading stories like yours just brings it all back for me as if it was
yesterday. It also makes me wonder at the ability of tiny tiny babies to have such a huge
desire to be here. I hope things continue to go well for you.
My wife, Viviane, is a preemie and is interested in how other adult preemies have done
in their lives, both medically and emotionally. Also, how have their parents outlook on
their children been different from other non-preemie children?
Last night I was watching Betsy, my 10 year old daughter. We were at her cousins wedding,
She danced ALL night, charmed everyone at the reception and delighted her parents. Typical
ten year old stuff.
but I remembered.....
Ten years ago she was in her 5th month at The University of Michigan's Holden NICU. At
that time she weighed about 2 and a half pounds. She was born on:
December 12, 1985
weighing 1lb, 10z.
11 inches long
25 weeks gestation
Your Mom and Dad will also look back at the beginning of your life and be amazed that
it really happened to YOU.
I'd like to share the story of Betsy (they called her "Itsy Bitsy Betsy" at
Holden). She was there for seven months - longer than her Mom was pregnant. She is a
happy, healthy normal 4th grade kid!!
It would be a different perspective for you younger preemies - and help your families
to look forward to a time when all the premier nightmare is OVER and you feel liked it
happened to someone else - I mean life is so NORMAL now..
How do I share her story? (It will be long, even after I cut it down) Does anyone want
to hear about it after 10 years? Let me know if you do.
Love, Life and Happiness
Hi Tommy: My name is Heide Estep. I live in Ft.Worth Texas. I want you to know that it
is 2:00 in the morning right now and I have stayed up to read your incredible story. I'm a
new mom as well. My baby and his daddy are in bed snuggling one another while I type
endlessly to complete strangers.:) My heart goes out to you and all you have endured. The
courage you have as parents couldn't be matched by any other. I love my baby to death and
at times get very frightened at the thought of losing him. And for you mom, a high five
for the breast-feeding stuff. I'm doing it too. If your Thomas is anything like Dillon, it
took a lot of time, patience and squeezing many stressballs to continue.
I hope all is going well with you and your family. And from this day forward you are in
my thoughts and prayers. When you look at your baby sleeping, or smiling, you can think of
nothing else but the miracle of it all. I commend you once again. I'm going to bed!!
Good night and God bless you all
Our son was born 3/1/96, at 31 weeks. I had been having premature labor for many weeks,
and had been hospitalized for leaking fluid & labor at the beginning of Feb. Then I
was on bed rest - that was the pits. We also have a 3 1/2 year old, who was having trouble
understanding that mommy couldn't do anything except lay around.
On 2/29/96, I was having labor pains (again/still), and then my water broke. The local
hospital was not equipped to deliver a preemie, so I got another ambulance ride (they did
the same thing in Feb. when I was having problems) to Chicago.
The labor was worse mentally, since we didn't know what to expect the baby to be like -
ie, would he have a lot of problems, would he even be ok. All in all, it turned out just
fine. 12:43 am on 3/1/96 Conner Thomas joined our family, weighing in at 4# 9oz, 17 in.
long. On 3/25 he came home from the hospital, on a heart/apnea monitor and some
I'm working from home now, and my husband will be at home this summer (he's a teacher).
The hardest part for us right now is the limitations due to the monitor, and especially
hard is all the questions from all the relatives and friends - ie, what happened to cause
me to have him early (boy, wish I knew the answer to that one), the phone rings all the
time, and everyone wants to know the latest on his dr. appt's, or how much he weighs now.
I was very happy to find your web site, we all need support and can help each other!
My name is Christine and my son Colin was born on 4/4/96 at 30 weeks. He weighed 3 pounds,
5 1/2 oz at birth. He is in the NICU at Sweedish Hospital in Seattle, WA. Today, I got to
go home from the hospital (of course without Colin). I was feeling very sad and lonely
tonight and couldn't sleep well. I decided to log on and search the web hoping to find
something that I could read and learn from. I'm really glad I found your story. So much of
this is still so new to me, but just watching the photos of you growing made me happier. I
am looking forward to sharing this site with Colin's dad, and also with my partner. Keep
up the good work at growing stronger and stronger!
I am a secretary in a Level III Newborn Center which includes a NICU. I found your nursery
while Surfing Local WebPages. A Neonatologist In Mississippi (where I live) had a link to
you. You have done a fantastic job and I do commend you and I will tell Our parents about
you. Good Luck. Bye.
We work in an NICU as a registered nurse (new orientee) and as a respiratory therapist
(old timer). Your story is very inspirational and it will help us to assist the babies and
parents in our unit. Thank you for sharing your story!!
God Bless You!
Kimberleigh & Roberto
Hi! Thanks for the reply! I think the point I was trying to make was that Logan has
cortical vision impairment and has light perception only in both eyes. He is doing great
though and does not know that he is considered handicapped in some circles! I thought it
was interesting that Tommy and Logan seemed to have been born under similar circumstances
at about the same time and that Tommy has a visually impaired cousin. Although it can be
disturbing to think about Logan's vision problem, we try very hard to concentrate on the
many, many positive things about him, not the least of which is that he is alive, happy
and healthy. We had a very positive NICU experience, both with Logan's progress and with
the staff. They became like our extended family and we still visit up there occasionally.
Your page is very touching and I appreciate the opportunity to share our experiences with
someone else who has "been there".
Sincerely, Mary Lynn Glenn
Hi Tommy: With all of the success stories I have been hearing from friends, relatives
and reading stories off of this web page, I can't help but feel encouraged with respect to
my baby son. Davis William Gysin was born March 1, 1996, 2 lbs 0.8 oz, and only 25 weeks
old. When the doctors said it was going to be a roller coaster of highs and lows, they
were not kidding. The first low was that Davis was not getting everything he needed from
his first respirator. He was then put on something called an oscillator. His lungs stay
expanded and spirals of air go in and out of his lungs very rapidly. This action caused
Davis to shake. That's pretty scary to look at. The first and second high was that Davis'
cranial ultrasound were negative, no bleeding on the brain. He then went back to a more
normal respirator, and work continued to close his PDA (patent ductus arterliosis,
probably incorrect spelling). The medicine used to close the PDA only closed it
temporarily, so the last straw was to surgically close it. On his 2 week birthday, he had
his first, and hopefully last, operation. The surgeon said the procedure went textbook,
and Davis' respirator rates and pressures have been improving ever since. I am sure
another low will come around the corner, but I am sure it will be followed by a couple of
highs. I've talked long enough. Great web page and everyone keep praying and hang in
Will Gysin, Davis' Dad
I read your story and it brought tears to my eyes. My son Stephen was born at 28 weeks
weighing 1lb, 14oz., on Dec. 27, 1993 (Due March 18, 1994) I developed severe preeclampsia
in my 28th week and Stephen had to be delivered via emergency c-section. My husband and I
had no idea a baby so small could be saved! Stephen's medical course was very similar to
yours Tommy. He was on and off the ventilator, developed infections, dropped down to 1lb,
8oz, had C-PAP, Decadron, etc.,. Stephen came home around his due date (on oxygen, apnea
monitor, pulse-ox and about 8 or 9 medications), and was hospitalized the next month for
hernias. In July of 94, Stephen aspirated on formula in the middle of the night. We called
911 and they were there within 3-4 minutes. Stephen was reintubated (that was so hard for
us) in Alexandria Hospital in Virginia, and then moved to the Pediatric ICU at Georgetown
University in Wash., D.C. We really thought we were going to lose him after coming so
far... He remained on the ventilator for 10 days, and was released 4 days later. Stephen
was on oxygen for the first 22 months of his life, but it never slowed him down!! He has
been oxygen free since Sept. and is down to 1 medication (Propulsid for reflux.) Stephen
is now 2years and almost 3mos. and is a very, very active little boy. He has some fine
motor skill issues that seem to be correcting themselves, and is delayed in his speech
somewhat. However he says Mama, Dada, Barney (ugh!!), NO and mine very clearly. We feel so
blessed to have Stephen and are constantly amazed by the ever-present smile on his face
after all he has gone through...He is our inspiration as I'm sure you are your parent's
You would probably be interested in our new WWW site. It is an informational program,For
Parents of Preemies: Answers to Commonly Asked Questions. We would like suggestions for
additional sections from parents. The parts that are under construction will be ready this
summer. We also plan to add pictures.
Jane E. Brazy, MD
URL of Interest:
Our son Nicolas is born on September 30th, 1995 at 25 weeks of pregnancy. His weight was 1
pounds and 9 ounces. He spent 7 weeks in the NICU of Ottawa¹s General Hospital (Canada).
After, he was transferred at the neonatal unit of our local hospital, where he spent 8
weeks. Except for a few blood infections in the first weeks, Nicolas was doing well. He
has been on the respirator for the first 3 weeks of his life. After that, because he was
beginning a lungs disease due to the oxygen, they put him on a steroids treatment for 3
weeks. After one day of this treatment, they took the respirator out of his lungs. Nicolas
was supposed to be born on January 10th, 1996. He left hospital the day before that date.
He weighed 5 pounds and 4 ounces. At 5 1/2 months, Nicolas weigh about 8 pounds and is
doing very well.
Marie-Josée and Stéphane
I'd love to share our story in detail. Our Meredith was born on 2/20/94,10 1/2 weeks early
(due to premature rupture of membranes). Praise God she had no serious complications. She
was what the NICU calls and F & G (feeder and grower) meaning she was just "doin'
time" to grow (birthweight was 2lbs. 14 oz) We had some negative experiences in the
NICU that I would like to with other preemie parents. After Meredith came home we were
faced with a very fussy baby for several months. As Meredith began to blossom (or when her
"preemieness" faded to the background) I found myself unable to shake my
feelings of grief (the loss of traditional pregnancy), sadness, anger, and unbelievably a
longing for her preemie days when she was so tiny and each day was a miracle in our lives.
To this day (we just celebrated her 2nd b-day) I am still nagged by those feelings. I look
through my thought journals, look at the NICU videos and pictures, and get out her old
preemie clothes that don't even fit some of her dolls. I'm curious if there are other
preemie parents who feel similar emotions. For each birthday, and for her NICU homecoming,
we made up a newsletter to send to friends and family. I'd like to share those with
you,(some of the stuff is downright hilarious.) If you are interested, please contact me
at your convenience. I'm new at this cyber-stuff, so if this is not possible, I
understand. It was great reading Tommy's story. It made me cry, but it was worth it!
Hello. I am the parent of a 29 week preemie. Our daughter, Paige was born at 1lb.8oz.at
Balboa Navel Medical Center in San Diego, Ca. She was born early due to pregnancy
complications. I was diagnosed at having severe ecyampsia and pregnancy induced
hypertension. My symptom were severe, yet I was continually told that things were ok.
Anyways, Paige is now 2 years old and her father and I are dealing with food adversion and
Hypersensitivity. I would love to seek out other parents who have experienced the same
kind of difficulties. Is there anyone else out there who has experienced severe ecyampsia?
Medical information is sketchy at best. My husband and I would like to have more children
but frankly I am terrified that this may happen again. It has been a very frightening
experience. I am so thankful that our daughter is doing so well as compared to other
stories. Preemie children are so strong and so special. It is so amazing that a child so
small and fragile could survive such a frightening experience. I hope that you are able to
reply to this! I am looking forward to it!
My son John Logan Dixon Glenn ("Logan") was born on 07-05-94, at 26 weeks. He
was due 10-09-94. Logan weighed 2 lbs, 4 oz and was 14 inches long, slightly larger than
one of his older sister's Barbie dolls! I also had placental abruption at 6:15 am and was
rushed to the hospital after losing lots of blood. Logan was born by emergency NC section
and had an initial Apgar score of 0. Logan spent 10 1/2 weeks in NICU and finally came
home on 09-14-94, at 4 lbs, 4 oz.
Mary Lynn Glenn
Your dad has done a nice job on your story. We wish you good health and happiness. Our
daughter Kaitlin was born February 27 just shy of 28 weeks gestational age. She weighed
only 1lb 9oz. We don't know how things will turn out - but but it is comforting in a small
sense to know that there are success stories we can pin our hopes to. Best of luck
Michael and Madeline
Katilin's Mom and Dad