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Tommy's Preemie Web |
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Our first messages from 1995
I am a sister of a preemie. My brother was born on April 11, 1975. He had a gestation period of 24 weeks. He weighed in at 1 lb. 4 oz. After reading Tommy's story, I felt compelled to write. Much of Tommy's story seems like dejavu. My brother's nickname was "Champ" all the while he was the neonatal unit at Strong Memorial Hospital in Rochester, NY, (he was in there for approximately 67 days). There were times when my parents thought that they would lose their one and only son. In the beginning the hurdles seemed to come at him every hour of every day. As time went on, the hurdles seemed to space out and he seemed to clear each new hurdle even better than the last. I just want you to know, that he survived and is now 20 years old, a college student in Delaware, stands 6'3" tall, and is about as much, if not more, of a pain in the butt as any brother could be. But, after all, what are sisters for!
Thanks so much for making this page available. We're the parents of Liam, a 6 week old preemie. The similarities between Thomas and Liam are amazing: both 15 weeks early, same weight/length, extremely similar development, from infections to steroids to de-sats to isolette transfer, etc. Even the abruption! He continues to do well. I hope same goes for Thomas. We'd love to hear from you. Keith & Laurie Phelan
As i read Thomas's story, i was verging on tears. I am a 22yo student in Perth, Western Australia. On Tuesday last, (8.8.95) my mum (Fiona Cullity) gave birth to my new sister (Elizabeth Rosemary Johanna Cullity). Elizabeth was in her 25th week as well, and weighed 515 grams (i think that equalls about one pound). Mum also had the placenta separation, although i don't think to the same extent. Today is Elizabeth's fifth day in the outside world. Your story gave me hope, the figure of 6-7 out of 10 surviving made my heart pause, but the follower of good success for the ones that live past 48 hrs restored me. The nurses and doctors at King Edward (hospital) have said that Elizabeth is doing well. We had a bit of a scare on on about Thursday, Elizabeth had an infection in her lung and her weight dropped to 445grms, but since then she has done well, and today she gained 15. Thank you very much for your story of hope and success. I will get a print out for Mum to read (she's still in hospital).
Greetings... I love the page dedicated to preemies... :) Our son was 6 weeks preemie and spent 2 weeks in NICU with respiratory distress, among other problems... Anyway, he has his own page, along with a picture... It can be found at... http://www.intellinet.com/~bedens/kids/chigger.html Oh, and his name is Zak Edens, affectionately known as The Chigger. Keep up the good work...
There should be a "kind of" option! Tim was only three weeks early, but had hyaline membrane disease, did the vent, doses of Servantin, etc. We have been going crazy looking for information on his developmental delays. His EEG and MRI were normal. But he's still considered to have CP. Would like to correspond with others in same situation. The NICU experience was horrible, wonderful, and very very unforgettable. We feel a special bond to all who've been there. BTW, Tim is the sixth child for us, and we would like more. Thanks for sharing. Kathleen
This is really great. I'm the proud parent of a preemie myself. Cody Alexander was 7 weeks early due to HELLP Syndrome. He was 4 lbs 15 oz. It was the toughest time of our lives, but the support and friendship that we received from other parents in the NICU was wonderful. I was so excited to find this site, to read about other babies and parents who have gone through what we have. Jules
Our daughter, Alissa Anne, was born 15 weeks premature on October 31, 1985. She was 1 lb. 11 oz and 13 inches long. Alissa spent the first 7 months of her life in the hospital, the first five on a respirator. Of all the horrible things that could of happened...we have an almost 10 year old about to start REGULAR 4th grade. Of course, it hasn't been easy. It seems like everything has been delayed: motor development (large and small), communication skills, etc., etc. We also found out in first grade that she has ADD (attention deficit disorder). But with the help of a great group of professionals in our school district, a wonderful doctor, hard work by my little "pumpkin" and parents that decided early on the miracles do happen...we have prevailed!!! People who have not lived through this experience just don't understand...it plays an intricate role in your life forever. It is so wonderful to read the success stories and so sad to read the not so happy ending stories but I feel so connected to you all. Good luck to Thomas...it's been wonderful sharing with you all.
My son, Jayson Amando Sorrell, was born Dec. 3, 1995, 3lbs 11oz. He was 12 weeks premature. My husband and I went through pretty much the same trials and tribulations that you did. Unfortunately, we were unprepared for some of the things that happened and really didn't receive much information on preemie babies' development. Jayson later passed away from a disease called NEC (I am not familiar with the medical term). He lived exactly three weeks, and his death was quite sudden and unexpected. I didn't write all of this to be depressing. I just wanted to say that I was very encouraged by your story and would like to see it in print, perhaps a pamphlet? A lot of parent who have preemies can be encouraged as well. I am glad that I took the time to read the story, because it really helped a lot. It helped me realize that we did all that we could and should not blame ourselves for what happened. On a happier note, my husband and I are expecting our second child, due Jan. 21, 1996. My pregnancy is going very well, and I am in constant contact with my ob/gyn, who is keeping a hawk eye on me. Thanks for the story, and the listening ear. Hope to hear more from you soon. e.
My daughter was born 12-16-90 at 28 weeks gestation. After reading your article on Thomas born just 3 week sooner I feel blessed now more than ever. I was very fortunate Jessica weighed 4lbs 11 1/2 oz and was 16 3/4 inches long. She had no breathing problems although they had her in an oxygen hood for 6 hours. I went into labor at 7:00pm on a Saturday night (although I didn't know it at the time). At 9:00pm I wasn't feeling very well so I went to bed. After being up and down serval times at midnight my water broke. My parents rushed me to the hospital and by emergency c-section (she was coming breech) she was born. My husband at the time was in the Army and stationed in Germany waiting to be deployed to Desert Storm. I had some problems early on. In July I miscarried her twin. Of course it was 2 months later when I found out I was still pregnant. She was ready to come home after 9 days. Even though my experience was a lot different from yours I still feel that all preemies should be given the chance to prove they can survive. Jessica in now 4 1/2 and ready to start school in the fall. It has taken 4 years for her to outgrow her preemieness. Hang in there there will come a day when Thomas will catch up to his age. I even had people come to me and make stupid uncaring remarks. Jessica was born at 3:01am and I didn't get to see her until 5:30pm. All during this time the nurses kept telling me she was fine I was still scared. One of my step-cousins made the comment that if it was her baby she would be demanding to see it. I could have done that-but I felt it was in the babies best interest to stay in the nursery. Congratulations on the progress of Thomas.
You must have gone through a lot of effort to put this page up! There is a great deal of excellent info here! My daughter Kate was born 9 weeks early on March 17th 1995. She weighed 2 lbs 7 oz and was hospitalized for 53 days. She came home on May 9th just nine days before her due date. Kate was an emergency section because I came down with very sudden and severe toxemia. Things were really a little iffy for a while there. I can appreciate your sensitivity to the negative portrayal preemies seem to get in the media. Aside from the ethical questions, there is always a focus on the problems some of these children have. Too often there is a focus on drug/alcohol abuse by the Mom. It makes me want to scream! Kate is doing fine. So far she has no problems, and is doing age appropriate things. She is even a little advanced in some areas...probably because she has been "out" for a longer time. Happy birthday to Tommy, best wishes.. John and Justine Diamond
Just wanted to let you know your story is beautiful. Thomas is a handsome, healthy baby boy. My thoughts are with you for a healthy and happy future.
I was quite impressed with your wonderfully detailed and enlightening description of Tommy's earliest days. My husband and I have experienced our most sad and most joyous moments within the confines of an NICU. In 1993, our son (a 28 weeker) was born, and due to numerous complications he passed away after just 3 short days. Later that year, I miscarried at 11 weeks. Then, in Feb. of 1995 we had our joyous moments. Our twin daughters were born. They were 29 weekers, but after 8 weeks in the NICU they came home and have done very well. After a beginning at 2.5 lbs., they now weigh nearly 11 lbs.!! We experienced everything that you did with Tommy, and much like you our respect and admiration for the NICU professional staff and nurses is unmatched. The very best of luck with Tommy.
Looking forward to the next installment, I am envious of what you've done here. You have take what was a living hell for me and turned it into support for those of us who have been through it, going through it, and for those who my face it.A warm hug to all, and wishes for health. My daughter Christina is a preemie born at 28 weeks, 2 lbs 14 oz she recently celebrated her 8th birthday. I noticed you are about to celebrate a 1st Birthday! I cried the day my daughter turned 1. I was so relieved to have reached that day. It was a difficult year. My water broke and I was hospitalized for 6 days without going into labor and began to develop an infection I was given the option of being induced or csection. My options seemed better with the csection ( I wasn't dilated) and Christina was delivered without getting the infection. She did great, Apgar of 7 at birth. Typical respiratory distress but came home a month before her due date at 4 lbs 6 oz. She was born at Worcester Memorial Hospital, Worcester, Massachusetts and they have a great NICU and staff. I thought you might be interested to know of Started by parents for preemies, the organization offers telephone support newsletter, education series, etc. 617-698-1172 (anytime and leave a message). Telephone support to parents is offered to parents from Boston thru North central MA area. Training is available for parents who want to volunteer. Not limited to preemies - NICU births and deaths. Your page is great. After recent media portrayal of premature births with extremely negative outcomes a balance is vital!
My cousin Elizabeth was just brought home from Wm. Beaumont Hospital last week. She was 14 weeks early, and 1 lb. 13 ozs. So far she is doing fine.
I'm an NICU Social Worker & have been for eight years, in an NICU in Newark, NJ. I do periodic Web searches on NICU related issues and found your page today. It's excellent. Tommy looks great. I've been working on a Web page on info re: preemies and sick neonates in the NICU, for families and friends of families. Don't know if I'll ever bring it off, but yours is excellent. A few questions for you: Have you heard about Parent Care? It's a very good coalition of organizations of families of NICU grads and NICU and developmental professionals. Again, congratulations on your work, both with the page and with Thomas Mindy
God bless all of you. My husband and I were blessed last year (May 25, 1994) with a beautiful baby boy born at 29 weeks gestation I had been hospitalized for the entire pregnancy, throwing up constantly and never being able to eat. I was fed intravenously for the entire pregnancy. Michael Casmere was 2 lbs. 12 oz. and spent 7 weeks in the NICU at Sinai Hospital in Detroit. Today he is 13 months old and the best thing in our lives. I met many couples at Sinai that were parents of preemies. These parent support groups were extremely helpful. I plan to keep in touch with these groups to help us as Michael develops. I enjoyed finding your web-site. I am thinking of getting internet access to find more items such as this. Thank you and God bless you and your Tommy!!!!
I have only read a small bit of your work here so are; thank you for sharing it with us. We are proud parents of Nicolas Anthony Winkley, born June 5, 1995 weighing in at 1 pound 13 ounces. He was born at 25 weeks also. He now weighs 2 pounds 8 ounces. I am attempting to put together and maintain our story, and will keep you informed of its location/URL. Again, many thanks, and congratulations on beautiful Thomas! Ethan and Cynthia
Hi! I just wanted to thank you for providing Tommy's story to the net. It has helped me prepare for what my wife and I are going through now. On June 27th our daughter Kathryn was born. At birth she was marginally at 24 weeks gestational age and weighed in at 1 lb 6 oz. She is in the NICU at Brigham and Woman's hospital in Boston. So far she has responded well to the care being given to her. With a little luck, we will be adding another success story to the web in a few months. -Andy
I read your narrative on your son Thomas and was real happy to see the support from you and lots of friends. My baby is currently in the NICU at the local hospital located in Albuquerque, New Mexico. My daughter (Micaela Lucero) was born June 30, at 4 lbs 8 oz. - 2 months premature. She just got off the respirator July 5 and seems to be doing fine. Although she is working hard to breath, she is receiving oxygen on her own. She has also experienced a few "spells" when she forgets to breath, not many 2-3 every 8 hours. My wife and I still watch her closely. This is our first child and you obviously know, its real hard to see your child hooked up to all the equipment for life support. Its nice to be able to share our experiences and read about others parents of premature babies here on the WEB. Thanks,
My son and daughter in law delivered on 6-9-95 a 15 week premature set of triplets. The boy Christian weighted 1-10 1/2. The two girls, Kelsey 1-8 1/2 and Anastasia 1-7 were not identical. the babies were conceived naturally, which I understand happens about 1 in 8000 births. The doctors say that the babies are surprisingly strong for their weight. Anastasia has a level 4 bleed on the left side of her brain, which makes her prognosis poor as to her future. We can only pray for the best. This last week the babies started on breast milk. Christian is 1 cc every 2 hours and the girls are 1/2 cc every 4 hours. I have been looking all over the Internet for information concerning premature infants, and was elated to discover your link. We don't have have any idea as to what to expect in regards to, development or future problems, etc. I have not as yet read all your articles of followed your links to see what information is available. I would like to thank you in advance for providing this special link. Thank you, Richard DuBois Mother - Shela DuBois
I read your 4 documents about your son's birth. I too have a son that was born 10 weeks premature. He is 3 1/2 years old now and is doing great. My experiences were so very similar to yours. I'm not sure I could write it all down yet even after three years without falling apart. I had placenta praevia. I too am tired of reading all the articles regarding the expense of saving these children as well as the articles that state prematurity and low birth weight is attributed to poor prenatal care. It helps to know that I am not alone!
I have added a link back to Tommy's Hallway from my page and have added several pictures of Katie while in the hospital. Please correct her birth date to 1991, I made a mistake in my haste to get a page going. Also, please change my URL to http://www.uis.edu/~tpowell/home.htm since www.sangamon.edu/~... will be changing within a month. I hope to add Katie's story as written by my wife soon. Thanks. I really think people need to know that 25 week preemies are worth saving.
I don't really consider my second child preemie since she was born at 36 + weeks and weighed 7 pounds 1 oz. She would have been big! Her father arrived home from a two week trip just after midnight and she was born at 4:16 am. My main reason for writing that when I read that some people question whether saving a premature infants life is worth the money I practically yelled out loud..."OF COURSE IT IS! How can anyone think otherwise?" Congratulations and good luck to your family. --Carol
We are the parents of a 6-week old baby girl that died of dehydration last September after having been to 2 specialty pediatric hospitals and 2 other doctors. They all said she was fine. She had been vomiting and had diarrhea for 3 days. They failed to admit her to hospital 24 hours before she died. We are looking for information about inquests (Ours starts in July 10 in Toronto), Medical treatment of dehydration, information and statistics about similar deaths. Any assistance would be appreciated!
Our daughter Katie was born @ 25 wks; 1.5 lbs; 12"; 6/7/91 {corrected by request}. She will be starting preschool in the Fall. We are starting a web page on my daughter:
I read your touching story about Tommy with great interest. My first born daughter, Marissa, developed diabetes when she was 23 months old. I feel a sort of kinship with every parent who has endured hospitalization with their children. Thanks for posting your story. I'm sure it will help many parents of preemies.
Wonderful child! You and your wife are very lucky and my wife and I wish you the best of luck. I agree with you that you cannot put a price on saving a baby. My son Jason spent a week in the NICU and to have some bureaucrat tell me that there was no money to do so would have resulted in a bloody nose for that person. All the best!
Hi Thomas! Thank you for stopping by my home page! How did you find me? I will add you as a link to my home page, and maybe you should too! I was a preemie, born 2 weeks early. I was born early because my Mommy had to have a C-section due to my brother's birth in 1993 (the C-section was classic, so all future babies have to come out c-section). My brother, Brandon, was born with VATER syndrome and only lived 18 hours :( Thank you for sharing your story to the entire world... you are a very beautiful and happy looking baby! Melanie Duke
I am only 39, but i can't have kids because of cancer. Just wanted to wish you well. The pictures really tugged at my heart!!! You have a wonderful project beginning here!
As the parent of a "former" preemie (2 pounder) I was drawn to your web site. It is an amazing thing that these babies survive and I believe that it is due to a combination of things -- your love and determination to help him being major factors. Congratulations on all your (and his) successes. There are times, obviously, when it is not easy (as with any child) but the rewards are great. Not a day goes by that I do not think of our son as our "miracle" baby. He is 2 years old now and thriving. He's quite a match for our 4 year old! Best of luck in the future.
I have a 4 yr old daughter with serious heart disease. She has had several open heart surgeries. I would certainly be interested in helping others who might have children with heart heart disease. I am new to the Web and don't know if this even fits in with what you are doing!
Nice page. Cute baby. Glad things turned out well for you all. A site you might consider a link to-- I suppose you might classify it as entertainment -- is www.io.org/baby, a display of baby pictures.
Our daughter, Caitlin, was born 5/23/84 at Bronson Methodist Hospital in Kalamazoo, MI. She was 9 weeks early, weighed 2 lbs.,11 ozs. with a tracheal esophageal fistula and a patent ductus. She also developed hylan membrane disease. After a lengthy stay in Bronson's NICU and 4 major surgeries before the age of one, as a result of the exceptional care she received at Bronson, she is now a happy, healthy 5th grader! She owes a special debt of gratitude to Dr's Powell, Dahman, Scott, Hartline, and Sexton. All the NICU nurses were exceptional. We share the joy of all those who've experienced the struggle and triumph of a miracle.
He's adorable!!! And congratulations!!!
Found your site in Hot spots on the [America Online] message board. Yes, he is very cute. Just like a cabbage patch doll. You must be very happy and very grateful every day to see his smiling face :) God bless.
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