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Tommy's Preemie Web |
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The Messages Keep Coming...If you came here from somewhere else, check out the "Hallway" of the "CyberNursery Web Site". Hi Tommy: My husband and I have boy/girl twins, Robert and Jessica, born on September 2, 1994 at only 24 weeks gestation. Jessica weighed one pound six ounces and Robert weighed one pound seven ounces. Jessica had an easier course as a preemie, except for laser surgery for ROP and one or two infections, she remained on a ventilator for 8 weeks and then oxygen, but came home December 8, 1994 with only an apnea monitor. Robert on the other hand was lifeless at birth. His apgars were only a 1 and a 6 (Jessica's were a 7 and an 8) he was blue and did not cry. the neonatologist did not want to resuscitate him since he was so poor and then all of the sudden he started breathing and his heart starting beating. He does, however, have a grade 2 IVH and reflux and feeding problems. Robert came home January 14, 1995 on an apnea monitor. Now 21 months (17 corrected) they are both doing wonderfully Jessica is at a 20 month developmental age and talking and walking and very smart. Robert is a little more delayed. he is not yet talking and is walking but has some motor coordination problems he also has feeding problems. they were born at Thomas Jefferson university hospital. > Your web site is the best for preemies that I have seen. I wish you the best of luck. parents who can make it through having a one pound baby can make it through anything!!!!!!!!!!!!!!! Christine O'Hearn Hi. Tommy, I would like to thank you for the time you took to set this up. My wife and I had our baby yesterday and are really unsure how to deal with this. Our baby Richard was born at 27 weeks and 2lbs 7oz We are going through just about the same things you talked about CPAP was removed today. I think I can handle the two steps forward one step back but my wife is not holding up to well. Thank You & God Be With You, Angelo Chiodo Hi Tommy: (and mom and dad) Just wanted to say that you have a great site and I'm so glad that it's out there for parents! I was fortunate to have 2 full-term births (two girls, 2/2/94 & 3/6/96) but I volunteered in a local hospital's NICU/Intermediate nursery for a year...so I know a little. I'm here doing research for an article I'm planning to write. :D Nancy Hi Tommy: Our Keith was born at 1 lb. 9 1/2 oz. He was 12 inches long and born at 24 5/7 weeks. Reading your story was so much like our own. Keith was born at the University of Iowa Hospitals. The nurses there were just like family to us by the time we left there. Keith was in NICU for 29 days. Intermediate care nursery for another 2 months. And finally the pediatrics ward for 2 weeks where we learned how to operate the oxygen equipment and monitors to take him home. We felt like experts by the time we went home. Keith was only home for 2 days when he was back in the hospital with RSV (a respiratory virus). This was far more serious than the last 2 months had been. We were lucky ones, Keith didn't have any surgeries, no glasses and seems to be just fine today. He is an active 2 1/2 year old. Thanks for sharing your story. If anyone in Iowa ever needs someone to talk to about their preemie, they are welcome to contact us. Sharyl Weich Hi Tommy: I really enjoyed watching you grow up to be big & strong. maybe someday you can meet my baby on the Internet (when I learn how to operate this thing!) give your mommy & daddy a HUGE hug. they really deserve it. I've been there and I know how proud they must be of your tremendous progress! :) best wishes to your whole family! Donna Wang Donna & Ho-Ming Wang Hi Tommy! I enjoyed browsing your site! My daughter Leah was born 2 months early at the Grace Maternity Hospital in Halifax, Nova Scotia, Canada. I had an intestinal infection, which caused me to go into labour early. 2 days after Leah was born, she was diagnosed with viral meningitis. My husband Kermit and I would would like to hear from any other parents whose preemies have had the same problem. Leah is now 8 months old, and is doing exceptionally well. Every day, I look at her and still cannot believe how lucky we are. Good luck Tommy! You are a lucky boy to have such dedicated parents! Keep up the good work Mom and Dad! Cheryl Chappel Phillips Hi we just found you. We would be glad to chat about anything related to preemies. We had a 26 weeker. We're glad we found you. Jeff and Jennifer Seivert Hi Tommy: My name is Mallory Frances Bridgman and I am now 14 weeks old. I was born at 34 weeks and had to stay in the hospital for 6 days. My mommy and daddy came to see me every day and know how exhausting it can be. Kudos to your parents for hanging in for such a long time. I weighed 5 pounds 15 ounces so I was a big one for the NICU. My mommy had a bicornuate uterus that caused her water to break early and was not discovered until after I was born. There is a possibility of it happening with future siblings but the doctor says there is no need to worry. I am glad you are doing so well and I think you are very cute. May God bless you and keep you well. Mallory Hi Tommy: Tommy, you have a beautiful picture. I just wanted to thank you for providing such wonderful information. Although I am not a mommy yet, I am in graduate school and screening babies in the NICU for possible hearing loss so we can fit them with hearing aids as early as possible. I am trying to learn as much as possible about you little guys and gals. Everyone is a miracle and I love visiting the NICU everyday. I am hoping to find information on talking to mom and dad. Do you know where good sites are on talking to parents about different conditions of their babies? My supervisors are wonderful but none have been in your parents position. If parents have suggestions, where do I look? I hope you can help me. Thank you Barbara K. DuPree Hi Tommy: We just had a preemie on May 9, 1996. Her name is Zoë. She weighed 1 lb 12 oz and was 13 1/2 inches long. She's struggling right now with an infection in her lungs. My husband and I are clinging to each other and the faith in her doctors and God. We hope she will be home with us soon. We know it's going to be a long summer. My original due date was August 5th. I would love some advice on how to make it through this roller coaster. Thank you Amy Ellars Hi Tommy: I'm a new uncle of a premature baby (the first in our family). My sister (Kim 28) and her husband Mark had a baby girl this morning at 5:28 a.m. She is doing well but is 13 weeks premature and 2lbs 4 oz. She's scared the daylights out of everyone. I was trying to find some information to send to my sister and I was pleased to see your page. I will pass the information along to my sister and hope to have a similarly wonderful story to share as KayLee goes home in a few short months. Thanks for you page. I do appreciate as I'm sure others do. Greg Merritt Hi Tommy: We are the parents of a 26-week preemie born on April 22, 1996. Most of what you and your wife experienced is very similar to what we've experienced (and are still experiencing). Our little girl (Gabriel Anae) is doing extremely well. The doctors and nurses tell us she is a "miracle" baby; in that she was extubated after just two weeks and is currently on CPAP with a low level of oxygen being supplied. We appreciate your story and understand some of what your family went through. It is great to hear of others who've shared similar experiences and had positive outcomes! Keep up the cool site! We'll keep watching to see how Tommy progresses! Thanks... Wade and Ranell Poe Hi Tommy: Hi, My name is Kim and I am An RN in a level 2 nursery. I have found some wonderful info in these pages and I am in the process of putting together a help book for our preemie parents. This is s great support network but do you know if there is a support network for the nurses?? I have been unable to find it so far. Please help if you can. thanks Kimberley Hi Tommy: I am a neonatologist and enjoyed visiting your site. I really love your pictures and would like to ask your mom and dad for permission to possibly use them in an apnea program brochure we are putting together for the Infant Apnea Program at Stony Brook University Medical Center. The pamphlet is for those parents whose babies go home with an apnea monitor the way Tommy did. It will tell them how long to expect to be on the monitor, what the monitor does, who gets monitored, who to call and when to call. Please e-mail me back with a response. Loved your site, Joseph D DeCristofaro, MD Hi Tommy: I have twin sons who were born a day short of 27 weeks gestation. Kristopher weighed in at 2 lbs. 4 oz. and Ian weighed 2lbs. 1 oz. Both both spent a total of 11 weeks in the NICU and Special Care Nurseries at St. Vincent Medical Center in Toledo, Ohio. Both boys had problems with brady cardia and apnea. Their recovery was long and complicated. Today they are 18 months old and finally walking. Both spent some time in physical therapy due to developmental delays. They seem to have outgrown most of these! We are so lucky!!!!! After our stay in the hospital two other mothers of preemies and I started a support group for parents of babies in the NICU. I find this very rewarding and hope to offer support to other parents going through similar situations. I would love to correspond with anyone who has a preemie or two! I also went through 2 weeks of bed rest in the hospital. Basically upside down and on great doses of Magnesium Sulfate(nasty stuff). I would love to share stories! Charlotte Mariasy Hi Tommy: My name is Bea and my husband is Joe, we are the parents of Elizabeth born at 30 weeks. Her due date was March 4, 95 and she came into this world on Dec. 23, 94. She weighed 2lb 4oz and 15 in long. I had started bleeding with her and they had to take her. My husband almost lost both of us. She came home on March 3, 94, the day before she was due on oxygen and apnea monitor and pulse oximeter. She is now 17mo old and walking and talking a little. They say that is the only thing she is still behind on is her speech. We are going to have another baby in Oct. if it comes on time. Thank you for your site. I wish we were on the net when she was born it would have helped us. Thank you again. Bea & Joe Hi Tommy: I have a little boy named Jackson who started out in this world almost exactly as you did. He weighed 1 lb. 14 oz. and was 13 and 1/4 inches long. He was also 15 weeks premature. Jackson is now almost 15 months old (adjusted) and is as far as we can tell a perfectly normal (though somewhat lanky) child. He had a few complications at birth (well, actually he had a lot but most were relatively minor). Of course, he was on a ventilator for 8 weeks and had bilateral grade II IVH. He also had successful laser surgery on his right retina to correct ROP. Jackson's outcome was wonderful considering all the possibilities. We had our ups and downs but reminded ourselves that overall progress was our goal and we knew that the progress of a premature infant is a lot like the stock market, only more volatile at times. Our investment in prayer and faith and the resultant patience and peace was very important to getting us through a pretty tough period. My wife and I are so glad that you are doing well. Thank you for letting your parents share your story. Jim and Pam Roof Tommy's parents: It seems like 13 years not 13 weeks (today) Kaitlin has seen slow (very slow at times) but steady progress. She is up to 1600 grams as of last night (3 lb 8+oz), still on a nasal cannula but PO feeding well. I took the liberty of down loading your story and many of the archived files of emails. The "Tommy Book" has made it to many bedsides in the Lutheran General NICU. One nurse even had an instructor make copies and share it with nurses in training. We have had many anxious moments but keep the faith that one day she will be home and well. Hope all is going well for you. Kaitlin's Father Hi Tommy: I am glad to see you doing so well. My son was 6 weeks early.(Jacob) It was painful to see the pictures, because I know so well what takes place. I had a beta strap infection that put me into premature labor for 8 weeks. Dr. did an amnio. and found his lungs mature. he was delivered 2 days later Jacob was in the NICU for 4 weeks. Another Dr. said if they would of tested me 2 weeks earlier, Jacob would of been full term. I was lucky for the fact Jacob is a fighter, and survived. Also with the help of a great doctor!! It still hurts to know of their mistake, and what it has caused me and my son. Jacob has a lot of medical problems. Mostly infections, but some others. Too long to list. I am now trying to get pregnant again, and now know a lot more than I did then. There is more to the story, but if you would like to know more contact me!! Best Wishes and a wonderful, healthy life!!!!! April Lusk Hi Tommy: Your story brought back a lot of memories for me. My husband and I have experienced a similar story, also with a happy ending. Our son was born at 28 weeks, weight 2 lbs, 7 oz and spent 7 weeks and two days in the hospital. What a blessing he is! He will be 9 mos on Sunday, May 26th. I had a hard time reading the story because I was on the verge of tears with all the emotional memories. Our son, Aaron, is doing great. Glad to read about other happy preemie stories. Beth and Mark Bergman |
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