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Tommy's Preemie Web |
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Mid-September through late November Messages...
Hi Tommy: Way coooool web site! I'm glad to hear you are doing so well! Your buddy, John Henry (& mommy Suzanne) Suzanne John Henry's Here!
Dear Tommy, Mom, and Dad Just wanted to drop you a note telling you how much help the CyberNursery has been to my wife and myself. We recently had a "26 wk" baby girl named Marilyn, and your web site has been a great comfort to us. It has help us a lot to see how well your son is doing, and has given us tremendous hope for our little girl. If you have no objections, I would like to place a link to your web site from mine (www.mindspring.com/~addie). I have a section on my web site where I am keeping a diary of Marilyn's life, and pictures of her. My wife is a school teacher, and the students in her school has shown a great interest in Marilyn, and with a link to your site, I think it would serve to educate them a little further on preemies. I was also wondering where you got that great train wallpaper from. I would like to use something like that for Marilyn's page, but haven't had much luck finding anything. Again, I would like to express how much your site has helped us. Sincerely, Dwight, Stephanie, and Marilyn Dunbar
Hi Tommy: Hello, my name is Dawn, my brother's sitter Shannon, is doing research on the babies that have been in NICU, and the affects of premature babies and how they are now. She was wondering how Tommy is now, and any effects that he has because of that. We read your info on the web page, and appreciate all the work, you put into it to make it available to others. She was wondering if you know any other info on others that have had problems with NICU, after leaving, and now as a child, long term effects, etc... Any info that you can send asap, would be helpful, we did several searches on the WWW for info on this subject, and your site gave us the most info so far, Thanks again for the good work, and I hope you will be able to reply asap. Thanks. Have a great day! -Dawn & Shannon PS- Tommy, I hope you are having a fun-filled life with your parents!!! Dawn & Shannon Planning for Little ones...by Dawn
Hello, my name is Dawn, my brother's sitter Shannon, is doing research on the babies that have been in NICU, and the affects of premature babies and how they are now. She was wondering how Tommy is now, and any effects that he has because of that. We read your info on the web page, and appreciate all the work, you put into it to make it available to others. She was wondering if you know any other info on others that have had problems with NICU, after leaving, and now as a child, longterm effects, etc... Any info that you can send asap, would be helpful, we did several searches on the WWW for info on this subject, and your site gave us the most info so far, Thanks again for the good work, and I hope you will be able to reply asap. Thanks. Have a great day! -Dawn & Shannon
Hi Tommy: My first child, Emily Rebecca, was born yesterday. She weighs only 1 lb and 11 ozs. She is 13 3/4 inches long. Her mother had PIH (Pregnancy Induced Hypertension (Toxemia) HELLP))) She was born at 25 weeks. I'm afraid that she may not live, or may be abnormal in some way. Tommy's story has given me hope, thank you. David Martin Schulze
Hi Tommy: All these stories inspired me to write about our son, Mitchell Alexander (Mitchie) and his early struggles. He is 2 1/2 now and just as happy as can be. Hope his story can be a source of encouragement and hope for someone ... Mitch Shue Mitchie's Story
Hi, I'm rushed for time, so I'll be as brief as possible. One of our preemie 27 weeker twins is going to need to have major surgery. He is three weeks old now. Part of his lung did not develop properly (nothing to do with being premature) and is ballooning of part of a lung. He is in Strong Memorial Hospital in Rochester, NY. This is my request/question: Do you know (know know anyone who would) of a Doctor or Doctor's that has done this kind of operation? I would like to do whatever I can to help get. Desperate, Bill Schuler, Clifton Springs, NY
Hi Tommy: We are the parents of 3 beautiful daughters, 2 are preemies @ 32 weeks and 1 @ 3 weeks. Our oldest daughter Andrea, was born July 25, 93 at 32 weeks weighing in at 4lbs 2ozs. She was in the NICU for 25 days and was on the respirator and all the usual tubes. With Andrea for whatever reason I went into labour and had her about 3 hrs later. (Prior to Andreas birth I had lost a baby boy at 26 wks - stillbirth. She is today a delightful (sailor moon crazy) 3 and a smidge year old. Sometimes I forget shes only 3 she seems so much older somehow. My second daughter Renee was born on May 25, 1995 at 32 weeks and weighed in at 2lbs 12ozs. She also had all the usual tubes, respirator (although for a shorter time that Andrea) however with Renee she had 4 grade 1 hemmorages on her left side of her brain, and the doctors couldn't be sure what degree and kind of problems she would have. (with Andrea I didn't know enough to worry about what could happen I just wanted her to live and to love her) with Renee I knew better. So needless to say I was terrified. Thanks to your web site I cried and didn't feel so alone. Fortunately, Renee is fine 16 months now and running and gabbing up a storm, she had very mild Cerebral Palsy and we are doing play therapy to strengthen her right side muscles, but I see no reason for her to not have a full and happy life. She certainly fills mine!!!! My third (surprise) daughter, Theresa was born this past April 15, 1996 weighing in at 6 She was born at 37 and a half weeks and is truly a joy. Content smiling and very happy and cuddly. I wouldn't trade any of them, as they've all taught me a lot about life and I am truly blessed. It is also nice to know that I could have a NORMAL pregnancy (although very difficult I.e. bedrest, hospital stays and weekly visits and ultrasounds) but I would have done all of them that way. I still visit Tommy's home page regularly and have a cry and feel so much joy at all these wonderful stories of all of these special children. To bad there couldn't be some kind of PREEMIE convention where all parents of preemies could visit share hugs, stories and love. But I am very grateful to Tommys dad and mom for sharing with us. Keep up all the great work and Tommy, you are truly an angel. God Bless you all and all the parents out there who have gone thru this and are going thru this. Debbie Foessel, Andrea, Renee and Theresa
Hi Tommy: You have a very nice page here. Glad to see everything turned out so happily! Jeff Golden Little Jeffrey's Baby Page
Hi Tommy: Hi my name is Stephanie and I was born 13 weeks premature and weighed 1 pound 6 oz. I had to stay in the hospital for 3 months. That was almost two years ago I am 17 months corrected and 17 pounds. My mom is staying home with me for a few months because I am not growing like I should. If you have any suggestions or ideas for my mom and dad about growing please e-mail us. Thanks Stephanie Harris My moms name is Brenda Harris and my dads name is John Harris Brenda Harris
Hi Tommy: I has triplets at 28 weeks. I was due 11/15/96 (next week) and delivered my 3 on 8/26/96. Katie was 1#14 oz Derek was 2#3oz, and Erika was 2#8oz. They were in the NICU for 6 weeks and moved to Pediatrics for 1 week. My kids didn't seem to have as difficult a time as you. Only Erika was on a vent. and CPAP, the other 2 were on nasal cannulas only. God was smiling on them I think. I am glad you are running around the house. It goes to show that Miracles do happen and what a fighter you are! Best of luck to you and your family! Cathy H. P.S. Great Web page!!
Hi Tommy: Thank you for the beautiful page you have, I have a friend who just have a premature baby 25 weeks, 800 grms, he is 3 weeks old, in Lima Peru South America, as there is not much information here I print the information and the story for my friend to fee Thank you PATTY ROIG
Hi Tommy: Our son Danny was born a scant 5 weeks early, nothing like the experience you went through! He was 4 lbs, 6 oz. at birth and was able to go home with Mommy two days later. The doctors could find nothing wrong with him other than being small and being born early. He is still tiny. He turned 3 months old today and weighs almost 11 lbs. He is healthy and content, especially when his tummy is full and Mommy or Daddy is cuddling him. We found your page using Yahoo! and the links helped us a lot during the first few nervous weeks. We were very lucky that Danny has done so well. We hope that this message might provide some comfort to other parents of preemies who have otherwise healthy babies but are worried because their babies were premature. With lots of love, and some extra trips to the doctors office, everything can turn out OK. And Thank-You for the help and encouragement. Kammy, Jon, & Danny
Hi Tommy: Your story made me cry, it was so familiar. I am glad everything is looking good for Tommy. You are right when you state that the medical establishment only talks about the bad cases. Our 25 weeker will be two in January. Our story is very similar to yours. She was only 1.9 lbs and stayed in the hospital for 16 weeks. Thanks for publishing your story. Ursula Kelly
Hi Tommy: First time I've been here in a while. Got all excited when I saw the breast feed link, then got letdown ;-) Honestly, the site is very impressive. Definitely the best site produced by anyone I ever lived with in college. Take care, Randy
Hi Tommy: Though you don't generally post commercial info, do check out our web site...especially our online library and bookstore. We have publications on high risk infants, etc. that may be of interest. If you ever decide to post links to such resources, do consider us. Your site is terrific. Keep up the great job. Sincerely, Jimmie Lynne Avery, Executive Director, Lact-Aid
International, Inc. Lact-Aid means breast feeding support.
Hi Tommy and Parents, I'm writing to send my best wishes to you and your parents. My son Greg, born 1/2/82, was a 28 week preemie He weighed 2lbs.4oz and dropped to 1lb.14 oz. It was a very complicated neonatal course; reading your story reminded me of those difficult times. I think it's important for parents of tiny preemies to be aware of the need for early interventions to ens Kathi Williams
Hi Tommy: Being new to the WWW I was just browsing and wanted to let you how much I enjoyed your site!!! I also own TLC Clothing specializing in preemie wear and accessories. My daughter is now seven and was born at 24 weeks. Having a preemie has really opened my eyes to just how precious life is. I also wanted you to know about a new book that I now carry. It's "Newborn Intensive Care-What Every Parent needs to Know" By Jeanette Zaichkin, RNC,MN. This book is the most up to date book that I'm aware of and it covers everything, 444 pages. the cost is $25.95. If you would like to receive a catalog please let me know or call me at 1 800 755-4852. Best Wishes, Linda Standiford
Hi Tommy: Monday 28.10.96 Regards Scott Meikle
Hi Tommy: Just a short thank you the site you have here. When our son was born at 30weeks GA it was reassuring to know of some of the success stories such as Tommy. However due to a medical accident our son dead after three days. Please let me know if you have any objection to your site being linked to mine. Kevin Trill Oliver's Story
Hi Tommy: We had a very premature baby also. Ayla came 12 weeks early She was a real fighter. She came home at 9weeks. She is 4 1/2 years old now, and is a proud sister of 1 year old sister Melis. How old are you? I am interested in getting in touch with other parents to find out how their preemies are doing. Deniz Schildkraut
Hi Tommy: My name is Laura and I am a graduate student at Boston University. I am studying to be an occupational therapist. My concentration is working in pediatrics, but I hope to work in the NICU in a few years. I have been studying all about what it is like being a premature infant and I am learning how to make life better for other premature infants who are in the same place where you were two years ago. Congratulations on being a NICU graduate. It is a very special thing to have. I am glad you are well and I wish you the best. Love, a caring OT student Laura George
Greetings!! Just read through your article about your preemie son. Just thought I'd add to your testimony that even though babies born extremely that doesn't mean the baby won't live. I am living proof as well. I was born 4 March 72, weighed 2 lbs. at birth, 3 months premature, 12 inches long, and during my stay in the hospital I dropped down to 1 lb. 10 ozs. I am now 24 years old and doing great!! Loved reading your story...I'm am kind of partial to preemie stories... My best wishes go out to all of you!!! PAULA J. HALL
Hi Tommy: You may be interested in including Knox Breast feeding Accessories as a URL on your site: http://www.ecrknox.com/betz Products available include breast pumps, nursing pads, breast shells, Lansinoh, and more. Plus: Breast feeding Answers from Ameda/Egnell, 12 topics with up-to-date information for pregnant and breastfeeding mothers. Of special interest to parents of preemies is the topic "Can I breast feed my premature baby?" at: Susan Betz Knox Breastfeeding Accessories
Hi Tommy: I love your site my 17month old daughter gabrielle was a 32week old preemie. I only wish I had some of the info that is available also just this week a relative had a preemie 32wks so I want to know if there are any mailing list or places mom can get some info. she does not have a computer. please help as you know you never know where to get the info until it's after the fact. so being that I have gone through this myself I would like to do some research and gather as much info as possible to mail to her denise weichart
Dear Parents of Tommy, We are also parents of extremely premature baby. Lauren was born at 23 weeks gestation and weighed 595 grams (1 pound 3 oz.) 11 inches. She will be ten months old on Nov. 1. Lauren was born on Jan. 1, 1996 her due date should have been April 24, 1996. After four long months in the NICU she finally came home, April 24. It was a long difficult ordeal. Each gram she would gain would mean so much to us, and each day would hold joy and encouragement and hope. It means so much to us when we are able to hear success stories of this little children. God Bless your family especially your little bundle of joy. The Cocozza's. Jan Cocozza
Aloha Tommy: My wife and I gave birth to Douglas on May 30, 1996. weighing in at 1 lb 2 oz , 11 inches long. He spent 10 weeks in the NICU at Kapiolani Women's and Children's Hospital. Douglas is now home on O2 and is growing like a weed, he is now at 7 lb 8 oz. and doing GREAT. We feel a strong kinship to the parents of other preemies and enjoy hearing their stories. Charlie
Hi! I was just browsing through preemies to see what info. was available. I am the parent of a micro preemie, born 15 weeks early, weighing in at 700 gms. I was also a 4 month NICU parent. I was looking to give support to those who need it. My little boy is now 10 months old weighing in at 14 lbs. He did go through a PDA ligation, and double hernia repair while in the hospital. We also had a scare with eyes at a stage 3+ with ROP. He had BPD being on the high frequency vent 4 times. I will be browsing looking to give info. to those who need it. I never thought I would make it through those 4 months but I did and so did he.
Hi Tommy: I am writing to ask for your support of the SIDS Project 2000. As you may know, SIDS, Sudden Infant Death Syndrome, takes the lives of 5000-6000 infants in the U.S. every year. That's nearly 16 babies a day. Beginning in 1992, the NIH National Institute of Child Health & Human Development began the "Back to Sleep" Campaign, promoting back sleeping for infants as a measure to reduce the risk of SIDS. On Oct. 11, 1996, the Centers for Disease Control in Atlanta reported data confirming that preliminary risk reduction measures appear to have been effective, but urging more widespread and comprehensive SIDS risk reduction education. ChildSecure (the organization sponsoring SIDS Project 2000) fully supports the CDC recommendations. Working together with the SIDS Network (and others), we have as our goal a reduction in the SIDS rate of 50% or more by the year 2000 through widespread education. ChildSecure has produced a documentary film entitled "SIDS: Reducing The Risk". This is the first documentary presenting current, comprehensive SIDS risk reduction information. Leading public health and medical experts on SIDS accurately and practically explain risk reduction measures emphasizing how all pregnant women and new parents can reduce the chance of their infant dying of SIDS. This film is powerful, entertaining and sensitive... Here are a couple reviews of the film... "... a must for everyone concerned about the well being of babies ... this film does an outstanding job in presenting actions that can be taken to reduce the risk of a baby dying from SIDS" Chuck Mihalko "... an outstanding video which very clearly presents everything known today about reducing the risk of SIDS ... perfect video for new parents!" "There is strong ... evidence to support all of the recommendations presented in the video." "I think the video is excellent" Beryl Rosenstein, M.D. A portion of the sale of every tape is donated to SIDS research, to the production of the SIDS Survival Guide: Information and comfort for grieving family & friends and professionals who seek to help them, and to allow SIDS Project 2000 to distribute tapes for free to women in poor and indigent areas ** how you can help ** We need to publicize the SIDS Project 2000 and the availability of the video tape to get the project moving, get people watching the video and generate funds to begin widespread distribution programs. A link to the childsecure web site from your quality site would help -- and if you see fit, we respectfully request such a link. Please let me know if you would be willing to help out in this way. Sincerely, Jim Wrathall
Hi Tommy: I really enjoyed reading your story. We have a son who was born at 28wks gestation and weighed 720g (1lb 9oz). We were very blessed as we only went through two weeks of real terror as he began to improve immediately after he had a PDA ligation 6 days a ell, although he continues to be very small for his age. I wish we were online when we were going through the NICU experience. It would have been very comforting to be in touch with other parents who had been through it I was wondering if you have any information on oral hyper stimulation as his pediatrician says that may be a problem with Liam--he has a very poor appetite and refuses most solid foods. Any help you can give us would be greatly appreciated. Thanks again for your story Kathy Still
Hi Tommy: I really like your Web site! I am the editor of a newsletter for preemie parents, and I was looking for information on "Parenting preemies on the Web." I found a lot of helpful information here, thanks. My only concern-What is an "EXTREMELY" premature baby? My son Matthew was born at 34 weeks on April 11, 1995. Is this considered "extreme?" And who, in reality, chooses what "extreme" is? While Matthew's NICU issues were different than others (he had RDS) his premature birth and hospitalization were just as traumatic to us as to the parents of a 26-weeker. I am happy to learn of your good outcome. Matthew just passed his 18-month checkup with flying colors! Lisa S.
Clark, My wife and I found Tommys home page to be quite inspirational; It makes us feel good to know we are not alone. I'm pointing friends and family to Tommys page to satisfy their curiosity about the ICN/SCN experience that we are going through. Thanks again. ...steve...
Hi Tommy: You definitely have a success story. My daughter was born at 24 weeks gestation, weighing 1 lb. 5 oz. We too thought she was a success story until she was about 9 months old. Her motor skills was lagging behind. She is now 15 months old and has been diagnosed with Cerebral Palsy. Parents with preemies, it is a long road, it is all worth it. But . . . don't let the doctors tell you your child will catch up by the age of two. If you child is behind, see a development pediatrician for help and guidance. Do not wait for your regular pediatrician to guide you. They will wait until you start to question the problems. If you want to know more about cerebral palsy and signs. Check out the Cerebral Palsy Menu. There is a web forum with pages and pages of information. We are blessed with a wonderful child. But remember, most children do not come home with a total success story. Be prepared! Karen
Hi Tommy: I am a mother of a premature baby, born at 30 weeks gestation. Miranda Lynn Stewart was 2 lbs. 12 oz and 12inches long. Her early birth was due to my severe case of Eclampsia, which resulted in a stat c-section. She scored 6 and 8 on her Apgar test. Heather
Hi Tommy: My wife and I had a little one in dec. of 1988 who passed on
in Feb of 1990. I (Ray or daddy) am still struggling with his
passing. I really don't talk to my wife about my loss of feeling
and I found you. I hope to share my experience with someone who Ray A. Banks
Hi Tommy: This is Daddy (Steve) and Mommy (Sally) of *TWIN* preemies! Maxwell Scott (2 lb 2 oz) and Sydney Rachel (2 lb 5 oz) made an early arrival during week 28. Today (10/19 or week 34) Sydney was moved to the step down unit (Special Care Nursery [SCN]) since she has no IVs and is over 3 lbs. She is up to full feeds of mothers milk via the OGT tube. Max, who hit a few more bumps in the road (Neuro Thorax [sp?], PIE, and some intolerances to mothers milk) is about 2 lbs 12 oz. Max is still in the ICN, but has his sights set on the SCN. After all, he has to protect his little sister. Your story was very encouraging and well written. I think I'm going to point all my friends and family to your web page to learn about what we are going through (CPAP, PIE, Isolets, Warming Beds, Pulsox, etc. etc. etc.) Take care, and good luck. Steve & Sally Rosen
Hi Tommy: Glad to see you all big and strong. I hope someday I will be like you. My name is Luna Dominique Patterson. I was born on September 25,1996.I weighed 1lb.8oz. and 12 and a half inches long. I think it's great that your parents put your story on the Internet. It really helps parents like mine, who are just starting to go through what yours and so many others have been through.My parents Chas and Jennifer would like anyone who wants to talk about preemies to contact them. Jennifer Patteson
Hi Tommy: Love your site. known about you for a long time, before frames. I'm a neonatologist and we have our own web site here in Milwaukee Wisconsin. Try it out and maybe you'll want to Link. We are: Newborn Care Physicians We tell a little about ourselves and more about some of our kids. Mary Mishefske, MD Newborn Care Physicians http://users.aol.com/mjmmd
Hi Tommy: January 6, 1987 I gave birth to a 2lb 13oz baby boy, 10 weeks early. He was born with septicemia and pneumonia and developed NEC& BPD. Matthew spent 10 weeks in the NICU and came home on an apnea monitor which he wore for almost 8 months. Lisa Luostari
Hi Tommy: My son, Pounder was born at 28 weeks but was ver small for his age. Because he was being deprived of O2 and food inside me, we took him early. We thought that he would be about 600 grams but was only 464g which is one pound even (hence the nickname Pounder). We were in the NICU for 4 1/2 months with the usual roller coaster. He came home at 4lbs 8oz and still on O2. Fortunately, he is cognitively fine and only slightly develop- mentally delayed. At 11mos age he had surgery for: hypospadius, partial fundoplycation (reflux surgery), and a G-button. He was off the O2 two days later and did great for about 3 weeks. That's when MY real struggle began. He has a swallow function disorder, so I have to thicken all liquids given orally. He went through a spell of "dumping" and gagging and retching (that's been better for about two weeks). Now he has a hernia though the nissen, but we're going to hold off on the surgery to repair that since the cons outweigh the pros. I think I've come to the conclusion that he is still aspirating on the thicken liquid. That would account for his repeated "colds". Now I have to decide if he should eat any by mouth. Pounder is 16mos old. He wants to eat when he is well. I don't know what to do. The doctor can't definitively link eating with his "colds". The doctors do not understand why it is important for me to feed my son normally. I pumped breast- milk for 14 weeks and then he couldn't even take it. It's hard to think logically and put emotions aside. Do you have any advice? or any where else I can go for someone who really understands? Warning: I'm new at this Internet stuff. Georgie cook@startext.net
Hi Tommy: Your visitors may be interested in the NewParentalk site for new parents, which just went online. Among other things, it's running a number of moderated discussion areas on topics related to motherhood and parenting. Regards Sherwood Fleming NewParentalk NewParentalk http://www.newparentalk.com
Hi Tommy: I am glade you are alright, what a tough start. It looks like every thing is going great. Just look to the future. Paul Violette plates@wow.com FAMILY TREE ORIGINALS http://www.adirectory.com/plates
Hi Tommy: Our son was born August 28, 1996. Aaron was born 14 weeks early. Sunday, the 22nd, was the first day my wife was able to hold him. That emotionally oddesy has left me completely drained. To our amazement in the time frame of a week he has come off his ossilater, to a respirator, and now to CPAP. I am trying to get more info on intraventricular bleeding. When Aaron was born he had a level 1, and a level 2. On my birthday we learned that both has escalated to level 3's. At present he is doing fine and not exhibiting any signs of of neurological damage. Still, I would like to learn more. Mark Saunders
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