Tommy Loves to Get Mail!

A very old message archive

Hi,

I was the mother of a preemie born July 12, 1983. Jason lived for exactly 14 days and 11 hours. He weighed 2 lbs 10 oz. and was at 25 weeks when he was born. He died of Respiratory Distress syndrome. Had he been born just three years later, his chances of survival would have been greatly improved. I am always amazed at how today's technology has given these tikes such a tremendous opportunity to live a perfectly normal life (at least until they hit their teens - ha ha)

After losing a second child, my husband spent many years as a volunteer on the Neonatal Transport Team out of Univ. Of MD. until the service went strictly paid (and he couldn't afford the pay cut). He spent many a rainy night when the helicopter couldn't fly traveling from Baltimore to the eastern shore or out to Garrett County to transport these babies to the specialty centers. During his time of service he was so impressed by the skill and dedication of the Transport Nurses, and the NIC teams.

He still takes great pride in having been a part of some of the success stories that other parents can tell.

Hi Tommy:

I forgot to include in my previous message the enclosed URL, which I found interesting. It is a journal filled with articles related to low birth weight babies (including preemies, of course). Parents of preemies can find some interesting up-to-date medical information and references.

Reading the articles helped reinforce my confidence that my doctors did all they could to help my preemie twins.

Sharon Perl

URL's of Interest:

http://www.futureofchildren.org:80/contents.htm

Hi Tommy:

Your story touched me deeply. My twin sons were born at 25 weeks in September 1995 (just two months ago) when I went into preterm labor for unknown reasons.

Unfortunately, we were not as lucky as you. Adam died after 12 hours because his lungs weren't mature enough. Andrew hung on for 24 days before dying of "NEC" (necrotizing enterocolitis).

During that time we experienced many of the joys and anxieties of having a baby in the NICU that are described in your story. It is such a foreign world---one that can really only be appreciated by someone who has been there.

I'm sure you appreciate how lucky you are. I wish you all the best for continued healthy growth and happiness!

Sharon Perl

Hi Tommy:

My son, Taylor, was born at 28 weeks, 1 lb 15.4 oz, 13 3/4 in. Taylor had a twin brother, Alexander, who died in-utero at 25 weeks. My boys' story is long and technical, it includes 5 amniotic drains, bed rest, in-utero blood transfusion, lots of anti-labor drugs, membrane rupture 10 days prior to delivery, and that's just the pregnancy! Taylor spent 94 days in NICU and came home at 4 lbs 5 oz. He is now 2 1/2 yrs old. His only problem is an unwillingness to eat. Taylor would like to chat with other preemies. There doesn't seem to be much info on preemie toddlers any advice would be welcomed.

good luck,

Tammy and Taylor

Hi Tommy:

My name is Salina. I was born at 34 weeks gestation on 11-20-94. I was born at 5lbs. 6 oz.. I was not nearly as preemie as some of your other friends, but my parents and I have had a tough time of it anyway.

I was on a respirator for 5 days and in the hospital for 9 days. My main problems have been Jaundice and asthma. I was jaundiced for two months before I finally returned to a normal color.

I continue to have trouble with my lungs. I was hospitalized at the end of January with RSV for 7 days. I have had continuing problems with asthma every time I get a cold. I am currently on my asthma machine every 4 hours again. It's good for Mom to read other people's stories and feel their support through them. Hopefully my story will be out on my Dad's web page pretty soon. Well, I just wanted to send you a brief message letting you know I was out here!

Salina

Hi Tommy:

Thanks for sharing your story. I wish this information had been available when my daughter, Molly, was born. Molly was born at 34 weeks GA. She weighed 3 lbs, 2 oz and was 16 inches long. Molly was born with a congenital anomaly known as gastroschisis. This condition was found on a routine sonogram at 14 wks GA and we were carefully monitored throughout the pregnancy by a perinatologist.

I knew that Molly would be transferred to the Level III NICU for surgery immediately after birth, but I was unprepared for the preterm delivery and the problems she experienced as a result of her early arrival. Molly was transferred to Children's Mercy Hospital in Kansas City, Missouri where she had corrective surgery at 2 hours of age. We went through a lot of ups and downs (NEC, Hyperbilirubinemia, feeding intolerance) in the 9 weeks Molly was hospitalized, but we had wonderful doctors and nurses who helped us every step of the way and never let us give up hope.

Molly is now a bright, beautiful 7 year old and I thank God and the wonderful staff at Children's Mercy everyday. In fact, I am now a member of the support staff for the Section of Neonatal/Perinatal Medicine at Children's Mercy Hospital and I learn more and more everyday.

I wish you and your parents all the best in the years to come.

Hi Tommy:

I am a mother of a preemie, he's 5 years old and hard to think of as a preemie. Bobby was 5 weeks premature and fairly healthy, he was on a respriator for 2 weeks but faired well and didn't have to be on oxygen when we brought him home from Denver, CO to Laramie, WY. I am happy to see you doing so well. Its always a miracle when a child enters our lives but extra special when they come through the toughest times.

I do have a question for anyone who can answer. I am hearing a lot about the liquid ventilation and am interested in anything you can tell me. It seems as though this is a break through in preemie care. My address is MOBERLE@UWYO.EDU. Good luck to all of you and its great to see so many success stories.

Maxine

Hi Tommy:

I haven't read your story yet but I like your nursery.

We have triplet brothers Ben and Sam who are 27 weekers.

As we say "Billy Boco".

love

Dave and Trish

Hi Tommy:

I, too, had the NICU experience. However, mine was because of complications with the birth not prematurity. I was born 18 days late with the cord around my neck and shoulder and had to stay because of infection from meconium in the fluid. Mommy cried all day when she had to go home without me and I really missed her too. Tell your Mommy to look for my Mommy on AOL if she gets over there and maybe I'll wave to you from her lap.

Your friend,

Kathryn Margaret Sugar (Mommy calls me KatieKat)

Hi Tommy:

Lori Jean was born 6/19/91 weighing in at 1 lb 14 oz and arriving at 27 weeks. She is now a healthy 4 year old and our story was very much like yours. Lori was hospitalized for 13 weeks in the Arnot-Ogden NICU in Elmira, NY. Thanks to the fabulous staff there (I especially remember Carol who was a god-send) she actually did quite well.

Over the weeks she was hospitalized I would drive the 2-hour round-trip to Elmira to visit every day since we needed desperately to be very involved (I pumped breast milk) and wanted to give Lori every best chance possible.

She came home on 9/13/91 weighing 4 lbs 6 oz. Although I did pump my breasts for 3 months, unfortunately she was so conditioned by the bottle that she would not tolerate the breast. She was the only one of my four children who I did not actually breast feed!

I am of the group that is a mystery as to why the premature birth happened. I did have an UTI at the time I was admitted to the hospital (on Father's Day) for vaginal bleeding so that may have been a factor. I had previously had two regular term babies and Lori now has a 21 month old brother, JD Hayes, who weighed in at 7 lbs 13 oz!

Tommy, I know your parents will continue to watch you sleep and marvel at how beautiful you are, at the miracle of your birth and continued advancement, how things could have very easily gone a different direction and how lucky they are to have you. Lori will always be my 'miracle child.' She will be starting school next September and with her personality she will do just fine even though she is small for her age. After all, she would not be here today if she was not a fighter! Good luck and God bless.

Lori Jean's Mom

Hi Tommy:

I was really very blessed reading your about your experiences, and those of others. You're truly a miracle baby, and I'm sure your parents thank God for you every day. I wasn't a preemie, but I was very tiny at birth, (14 or 15 in., 5lbs.) and just wasn't ready for the outside world.

I spent a lot of time in NICU, with feeding tubes and all, then spent the first 6 months of my life not gaining so much as an ounce; that, complicated by whooping cough at 3 months.

Now I'm a healthy, happy 18 year old in my second year of college. I absolutely love kids, and preemie babies have been an interest of mine for a long time. I wish you the best. You're a darling little guy, and I'm proud of you for hanging in there.

Take care and God bless!

Theresa

Hi Tommy:

I just wanted to tell you that I really enjoyed your pages. I am a fourth year nursing student at the University of Rochester in Rochester NY and I am currently doing my OB rotation which includes time in the NICU at our hospital here.

I was there tonight and I was amazed with the place and tried to imagine what it must be like to be the parent of one of the babies I saw.

Reading your story was uplifting. I am considering specializing in neonatal nursing because I want to be the type of nurse that helps parents like you. Thank you for letting me read such a comprehensive account of your story. It really showed me the "other side", the people who actually are the parents of the kids I saw.

I wish Tommy the best and I hope he continues to do so well.

Sincerely,

Laura Boyce, SN

I am very pleased to have found your site on the web.

I have returned to work this week after delivering Richard James on October 29, 1995 at 26 weeks. At 2 pounds, 4 ounces, the NICU staff at Fairfax Hospital was pleased with his weight for his age.

The past week and a half is just the beginning for us. Two unsuccessful attempts at the CPAP and he is back on the respirator as of last night. I am able to make mid-day visits with him as the hospital is close to where I work, but about an hour from where we live.

I am encouraged by Tommy's story and the comments from the other parents of preemies. We have many weeks ahead of us in the NICU. Our best to all of the parents who have had the courage to survive this experience and also to the strong children who have allowed us to become parents!

Hi Clark, Natalie and Thomas

Thanks for getting back to us.

Vincent's page is at http://www.vicnet.net.au/~garyh/vincent.htm

Nothing flash but it was good for us to put it together.

We'd appreciate it if you could put a link in to the home page.

best wishes

Anne and Garu

Hi Tommy:

Hello! I am a graduate student at Kansas State University and the aunt of three preemies, twin nieces now 12 years old, and a nephew going on two.

I am currently working on a project for functional clothing design class on clothing for preemies. I am very interested in hearing about the experiences parents had finding clothes for their premature or low-weight babies.

I appreciate any information anyone would like to share, including, but certainly not limited to the following:

At what weight did you baby begin wearing clothing?

What types and sizes of clothing did you use?

What problems did you experience with finding/using clothing?

What needs do you feel could be better met in preemie clothing?

If you were designing an outfit for your preemie, what would it be like?

I hope to use this information to develop preemie clothing which will meet the special needs of these precious little ones better.

Thank you for any help you can provide!

Sincerely,

Amy S. Roberts

amysue@ksu.ksu.edu

Hi Tommy:

Way to go Tommy! I am an RN in a level III NICU in NY. I have been a nurse there for the past 13 years and I love my preemies. I always seem to get the smallest ones when I go to work and have taken care of many 15oz. babies. Not many people can say they really like their jobs, but I can.

Hope you are doing well. Later, B.

Hi Tommy:

I love your site! I am an NICU RN x 15 years in San Diego, Calif. We have three 25 weekers in our NICU at this time, and hundreds of graduates. We have a yearly reunion for staff and families and we LOVE to see our grads. I have been using WWW on America Online since July and just found your site and related links last week. I have told some people at work about it, and am putting together a flyer for our parents info bulletin board to let online users know about your site.

Hi Tommy:

We're new parents looking for the Gerber homepage. We've had a difficult time finding it. Any Help available??

Great resource page!!

Thanks,

Mike and Laurie Beck (beck@cs.colostate.edu)

Hi Tommy:

Thanks for your encouraging story! My son, Nathan, was born 11 weeks early on November 30, 1994 and weighed 1lb. 15 oz. I was diagnosed with severe pre-eclampsia on 11/30, and Nathan was taken by c-section that night.

Your father's story brought back memories of the Neonatal Unit at Christ Hospital in Oak Lawn, IL. Our doctors told us it would be a roller coaster ride, and it was for 2 1/2 months. Nathan was on a ventilator for 3 weeks (and a jet ventilator for a few days because his PDA opened), we had a couple NEC scares, he had an infection and a liver problem, and he had hernia surgery before he came home on February 19, 1995 (his due date was February 14).

He is now 11 months old and is doing well. He is currently seeing a physical therapist (his gross motor skills are developmentally delayed), and she has been a great help. He can sit up on his own but has no desire YET to crawl. We are working on that now.

We really don't know what lies ahead for us, but your story gives us real hope. We are thankful every day that God chose to give us Nathan. He truly is a blessing to us.

Barb Kiehn

"...but this happened so that the work of God might be displayed his life." John 9:3

Hi Tommy:

I am Clarissa, Mommy to Alessandra Elizabeth, who was also a preemie, but not as little as you were. Alessie was born almost a month early on 11/9/94 (due date 12/2/94) and she was a healthy 6lbs 15oz when she came after 34 hours of giving Mommy pain :)

Alessie is almost a year old now :) and she is quite a character. She is quite a flirt and loves to play with markers (or pens, or pencils..) and laughs a lot when you tell her not to turn off the TV or toss books on the floor.

She can say "mamamama" and "oye" (Spanish for hey) and seems to be fixated on those 2 words for now.

So tell us what you like to do and how you drive your Mommy and daddy nuts :)

Clarissa Allen

Where did you find time to make up this web page with a baby?!!!!!!

I'm so glad for you that your son survived. We lost a son several years ago...fetal demise at 20 weeks...When I hear stories about babies who are born at that age and live, I find it amazing. Our son was so small when he was stillborn, and I had such trouble imagining him alive.

We now have a wonderful daughter, Emma, who is currently going through the recycling bin.

I found your page through a midwifery link...I'm an aspiring midwife!

Fond wishes to you

Anne

Hi Tommy:

Wanted to drop a line and say that its great to have other preemie families on the WWW. I wasn't sure if anyone else was inclined to get on the WWW with their preemie stories.

Our son Stone was a 27 weeker delivered by cesarean on April 6, 1995. He spent three months in the NICU at Swedish hospital in Seattle (and so did we). He's home and smiling now, at four months corrected age (Yay!).

We're just getting to the point where we feel like we can get out and support other folks now. Stone's Home Page doesn't have his story on it yet, but it will soon.

For now just drop by and look at what a very, very premature baby boy of 2 pounds 2 ounces can turn into in only seven months!

Brannon and Tricia and Stone

Hi Tommy: I am also a mother of a preemie. Sarah was born a 27 weeker on June 6, 1995. I was diagnosed with an incompetent cervix at 25 weeks. I had a cerclage performed (the cervix is sewn shut) but it was to late and I had caught an infection. Sarah was 2 pound 12 1\2 oz. 14 inches long. She is now 10 pounds 6 oz. and 23 inches She ended up staying in the hospital for two months.

We were fortunate that we didn't have anything major happen to her. She had the brady's, and she had an infection when she was first born. it is good to hear about others experiences and I feel that it is helpful to those parents who are going through it now.

I also saw a special on Preemies and was outraged at what they had reported. To see my little girl and to even wonder if she is worth all the money is ridiculous.

I have enjoyed reading about Thomas, and I am glad to see that he is doing better. It is hard to have a preemie at first but it has made me appreciate Sarah even more. Thank you for sharing your story.

Jenny

Hi Tommy:

It was so moving read your story, I have a little girl, Bailey Kendall who was born January 27, 94 at 36 weeks and weighed 4pounds 6oz, a little small for her age, although we were very lucky she was very strong, she only had to be fed by tube twice, never had to be in an incubator or have help breathing, she was able to come home after 19 days, although it seemed like an eternity, its hard to believe that she will be two years old in January.

She is a real angel, although she has been put through a battery of tests. She has been slow developing and has had to have physical therapy since she was 11 months old, she didn't crawl until she was 16 months old, and is just this week starting to take her first steps!

I am so happy for her, she is 21 months old now and weighs 17.5 pounds, eating is not her favorite thing to do. I am so happy to have found your story, Tommy is a handsome little fellow, I wish you all well.

Take care,

Twila Foulds

Victoria BC

I searched you out because I had a premature granddaughter, Elisabeth, born on October 23, 1995. She was born at 28 weeks and weighed 2 lb. 9 oz and was 14.5 inches long. Mother and baby are doing well. The doctors have found a heart murmur and I was seeking more information on this.

Elisabeth is breathing room air unassisted now. She was feeding with 6 grams every three hours on her mother's milk plus intravenous feedings. They had to stop the mother's milk while giving meds for her heart. They will do another echo on the heart tomorrow.

I must go for now, but will be back to gather more information.

Rene Hales

University of KY

Hi Tommy:

I am the proud father of a 28 week 3 day preemie, Mitchell Dean. It has been over 18 months since Mitchell's discharge from Phoenix Childrens Hospital, and the bad memories continue to fade as they are replaced by wonderful experiences with our beautiful son.

Mitchell was born while my wife was in her "steroid window" however, he quickly developed a pneumonia that became systemic. He was intubated and on a ventilator for 6 weeks--including 3 days on the oscillator.

We road the emotional rollercoaster up and down for a seemingly endless period of time.

Just as Mitchell was getting better, one of his many doctors alerted us to another condition of concern: Mitchell's vision. He had developed ROP which required surgery, but to cut a very long story short: he did extremely well.

He was sent home 9 weeks post birth on an apnea-bradycardia monitor and supplemental oxygen. I held him every night as he slept, told him I loved him, cried, prayed, thanked God (started believing in God!), and kissed his little head thousands of times.

I don't think I will ever get over the tragedy of having a preemie. I look 15 years older from the experience. However, my son has enriched my life beyond my wildest dreams.

Not a second of my son's life will go uncharished by either of his parents.

To my son, Mitch, I love you.

Hi Tommy:

Wanted you to know we linked to this page on our first ever home page at the above address. Tim's story is on this page. take care

URL's of Interest:

http://users.aol.com/momxsix/private/hoppefam.htm

Hi Tommy:

Just wanted to say what an inspiration your pages were - you've done a great job.

Our Vincent is a bit younger than Tommy but our experience is similar (Vincent is a "26 weeker" and he has just had his first birthday.) We are very relieved to have survived his first year - it has taken us this long to feel able to do a home page for him.

best wishes

Anne and Gary

Hi Tommy:

We had a 3 month premature girl on August 11/95. She weighed 2lbs 1oz and went down to 1.5lbs before starting to gain.

She now weights 4 3/4 lbs and is doing well. It hasn't been without a lot of worry but she is doing well. The next big concern is her eyes but we are confident that everything will turn out OK.

She is expected home by the end of November if all goes well.

Thanks for letting me share this with you.

Boy, what a difference a couple of weeks can make!

My last e-mail, I was pretty frustrated at the slow progress and the seemingly endless problems.

The problems still persist, but they're consistently getting better. Over the past two weeks, Caleb and Leah have grown from 3# 3 oz. and 3# 1 oz. respectively, to 4# 2 oz. and 4# 3.5 oz.. Leah has passed Caleb in weight gain!

They've also moved from the warmers to isolettes and are now beginning to bottle feed. Soon they'll move to cribs.

Leah's hydrocephalus has remained stable, and sonograms have been encouraging with signs of improvement. Caleb's spells have improved but now has inguinal and umbilical hernias as well. I'm told these are minor and easily corrected with age or minor surgery.

They'll be ready to come home in a couple of weeks. Now my wife and I are excited about the kids coming home, and are scared to death of taking care of them.

They say we'll feel very comfortable with the equipment and everything when they come home.

At least there's light at the end of the tunnel.

Thanks

Steven Holle

Hi!

I just reviewed your home pages dealing with your premature childbirth. I want to thank you for taking the time to set up such informative pages.

My wife and I are just starting to go through this process. Below is some information on what is happening with our experiences so far...

Name: Allen Scott Culp II

Date: October 19, 1995

Time: 07:29

Weight: 3 pounds, 7 ounces

Length: 17 inches

Here's a brief history on what happened. Tracy had to have an emergency cesarean section done due to the following reasons:

Pre-eclampsia - A common problem in pregnancy where the blood pressure is raised and there is protein in the urine.

Toxemia - An abnormal condition associated with the presence of toxic substances in the blood

Placenta Abruption - The placenta starts separating from the uterus and vaginal bleeding occurs.

Allen has severe neonatal respiratory distress syndrome. Much of this was relieved with surfactants.

Mom's doing fine now (albeit in pain). I brought her home from Hershey Medical Center on Sunday. Allen's a real fighter, he is expected home in about seven weeks (give or take a week depending on how he's developing).

Thanks again.....

Allen Scott

:-)

My daughter was born at 31 weeks. She weighed 3 pounds and 7 ounces. She spent a month in neonatal intensive care at Piedmont Hospital in Atlanta, GA. When she came home from the hospital she was on an apnea monitor until she was 8 months old.

She had apnea and bradycardia in the hospital. She is now 15 months old. She has 10 teeth, she eats table food and feeds herself, she is walking, and she is building a vocabulary. We think she is beautiful and perfect and if she is behind in her growth and learning, well it isn't very obvious to us.

I'm so glad I found this spot on the Internet.

Hi Tommy:

I think that your story was very inspiring and you are a very courageous young man. You have wonderful parents who love you and I can only wish you the best of luck in the future.

God Bless and enjoy life!

Love, Simone

Hi Tommy:

My son was born at 27 weeks gestation, weighing 1 pound 11 ounces and measuring 13 inches. He was the only survivor of a twin birth and was only given a 10% chance of survival, especially since he was born 18 years ago.

He went though all the ups and downs of such a small preemie and after 3 months of hospitalization, we wondered what the next few years would bring. The doctors warned us of learning disabilities, eye problems, gross and fine motor problems, etc. We enrolled our son in an infant stimulation program and though he did walk late and required occupational and physical therapy for several years, he now has almost no lasting effects from his prematurity.

He graduated from high school in June and was in the top 5% of his class. He was a member of the National Honor Society and got a presidential commendation for excellence in academics. As a second grader he took up martial arts to help with his motor skills and attained his second degree black belt a year ago. !

He is now a freshman in college and wants to major in aeronautics. Eighteen years ago we were only praying for his survival and we are so proud that he has accomplished so much despite his early arrival. I just wanted to let other parents who are just starting their lives, parenting these little miracles that despite all the setbacks and what seems like a long road ahead-there is a light at the end of the tunnel and despite how sick these babies are, there can be a good outcome and a very happy future in store for even the tiniest preemies.

Hi Tommy:

I was reading your explanation of the poor reporting from a tv station. One of the best ways to report a station such as this is to write the FCC and cc a copy to the station. Also include with the letter that it is to be public copy. Keywords that are helpful to include run along the lines of 'irresponsible journalism' and 'distortion of facts'.

It is a shame that they do not keep up with medical technology when they report on things like this. It can really dampen a person's hope even when things are going well.....

Good luck and God Bless!!

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