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Tommy's
Preemie
Web Online since 1995! Home ::: Preemie Story ::: Pictures ::: Links ::: About |
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More Old Messages...1996 ish
Hi Tommy: It sounds like you had a lot tougher time getting started in this world than I did. I'm glad you decided to stick with it! Good luck on your future adventures - maybe we'll get a chance to meet someday...
Hi Tommy: I enjoyed the photos. You (your folks) are quite accomplished at putting together an Internet site. I am sure it is helpful for parents of other young infants. Anyway I am sending a note to ask if I can use some of your on line photos for some of my presentations and lectures. I am an occupational therapist who has been practicing in pediatrics for the past 12 years. I am now specializing in working in the NICU, as a therapist. I will be doing a presentation this spring, to occupational therapists, on how nurses and therapists work effectively together in NICUs. Can I use some of the photos of your son in my presentations? I think that the photos will greatly enhance the quality of my presentation. Please drop me a line at the above E mail address. I check it about once a week. Thanks again.
Hi Tommy: We are the proud parents of a 26 weeker! We are one of the approx 50% of those who don't know why the baby decided to come early. A really brief summary of our story. Chris was born exactly 14 weeks early. He weighed 930g (2 lbs) and was 13 1/2" long. He developed NEC 4 days after he was born and underwent his first of three surgeries at 1 lb 10 oz. He went off the ventilator after 17 days and never went back on it. He went through a series of infections, viruses, and collapsed lungs. All of these events made his weight chart look like a roller coaster. He's had 2 grade two brain hemmorages,open ductus arteriosis, a hernia, ileostomy for eight months, and many other traumatic experiences for a two pounder. But, Chris was a trooper through it all. He did better than anyone could have expected of him. Chris came home after 108 days in the hospital only to return two more times. Once for seizures and the other to have his bowel reconnected. He is a VERY healthy 26 month old. Definitely the toughest kid on the block. Thank you for the opportunity to connect with others who REALLY understand. We would love to help in any way with your crusade to aid the preemies and their parents. There is definitely hope. Sincerely, Jeff, Jennifer, Chris,and Natalie P.S. We gave birth to a 37 weeker 6 months ago! What a change.
Hi Tommy: Tommy...to say that I am impressed and heartbound would be saying little. I was not a preemie but I was born with a major physical disability and I feel for all you and your parents have gone through. I wish you luck in all that you do and to your parents...A) You're both gorgeous! B) Feel free to see my homepage...when I update my links yer in there Sincerely, Pete Boulay
Hi Tommy: I am enclosing an editorial I wrote to my local paper about my experience: I was really blessed by your story. I know I will see Taylor again........
---------------------------------- God bless you and your family, Tommy delli777@gate.net
Hi Tommy: As a new parent of a preemie, I was searching the WEB and came across your wonderful page. My son Eric was born on August 16, 1995 at 27 weeks gestational age. He was in the NICU at Stanford University Hospital until Monday, when he was transferred into the Intermediate Intensive Care Unit. Reading Tommy's story was like reliving the past seven weeks. Eric had surgery for his PDA when he was five days old. He has Respiratory Distress Syndrome and now Chronic Lung Disease that has sent him down the road of respirator, CPAP, and now cannula. He made it for four days last week breathing room air, but then began desaturating and had to go back to the cannula. He was under the bili-lights the first two weeks for his jaundice. He also had a grade 3 IVH. However, the doctors say it is really like a grade 1 in terms of bleeding, but he does have the enlarged ventricles. For now Eric seems to be doing pretty well. He is gaining weight (now up to 3 pounds, 3 ounces). He was 2 lbs, 4 oz at birth and got down to 1 lb, 10 oz. Today we attempted breast-feeding for the first time. He seemed a bit confused, but I'm sure we'll get there. Our main concern now is his tendency to collect fluid in his lungs and breathe a bit too fast. But hopefully he will continue to grow and be able to come home in another month or so. Good luck with Tommy. He is adorable. I hope Eric turns out to be as healthy as he is. -Katie Jones
Hi Tommy: Congratulations on a wonderful page!!! Please check out Sara's story. This is a brief synopsis of the birth of my daughter, Sara. (http://www.planet.net/CrimsonGhost/sara.html) If possible include a link in your page. I've included a link to yours, as it seems to be the best start point on the web from information on preemies. Thanks, Jim
Hi Tommy: I just wanted to say hi. My baby Max was a 27 weeker born 3 days after you. He's doing great! I have a web page set up for Max, but it's nowhere near as sophisticated as yours. Anyhow, good luck! -Michael
Hi Tommy: Hi. I put a link to Tommy's page from my baby's home page at http://www.rt66.com/~telp/annmari.htm You have a wonderful web site, and a wonderful story. I hope everyone sees it. Drop by and pay us a visit!
Our daughter was born at 31 weeks on July 24,1988 2 lbs. 13 oz. We are very happy and thankful to say that she is now a healthy active 7 year old. She spent 39 days in the NICU in Orlando Florida. It was the longest time of my life. She was actually a "healthy" preemie with no major problems. She has had 5 surgeries in her life. None real serious, just each one scary. She has always been our "sickly" child. She gets sick easily. She is now in second grade and is actually performing very well academically, but is experiencing problems with her attention span. We are currently in the process of determining if she has attention deficit disorder. She had retinopathy of prematurity at discharge from the NICU, which self corrected. She was on an apnea monitor for 9 months. She has had several drug reactions, one to the pertussis poriton of the DPT series (She stopped breathing!). She is allergic to 2 antibiotics and numerous airborne things. At the age of 5 she was diagnosed with stabismus and had to have 2 surgeries to correct it. Now for the good stuff.. she is a beautiful, wonderful, creative little girl! We adore her and thank God that she survived. Yes, we have had a lot of ups and downs but she is worth it all and much more. We have a second child, a 4 year old son. He was born at ?36-38?weeks gestation (the ? is that my doctor and the pediatrician disagreed on his gestational age..I think he was 36 weeks). He weighed 8 lbs 2 oz! We didn't know what to do with such a big newborn!! I was a high risk pregnancy with him (I had severe preeclampsia with my daughter). It was a very stressful pregnancy. I was (supposed to be) on bed rest for the last 9-10 weeks. We were very afraid while I was pregnant. We knew what could happen. We were very lucky! I was involved with a parent support for preemies for several years. it has now disbanded. But it was the most wonderful thing..to talk to someone who wasn't shocked by the apnea monitor or the fact that she had reflux and could spit up across the room! In the parent support group -- we were the norm -- not the one who was different. It really means a lot. I wish your family many happy times with your little one. P.S. This is one of the first times I have been on the Internet..forgive my skills!
I delivered a healthy, 9 pounder in May, but my sister, who had been trying to get pregnant for several years, was due in mid-November. She delivered Reynaldo Nicolas August 23 after a week of hospitalization for high blood pressure. The baby weighed 2 pounds 8 oz, and is doing great now - from what she says, he is off the intubation, off the i.v. and is attempting one bottle feeding a day. He is having trouble with the suck, swallow, breathe concept, but is getting the hang of it slowly. She and her husband (Delia and Rey Molina in San Antonio, TX) give him his bath every day and spend as much time as possible with him during the day. They still have a long way to go, but are extremely optimistic. It gives me a great amount of comfort to read Thomas' story, because I had been feeling almost guilty for having such a big healthy baby while my sister was struggling with Nico. But, this reinforces my mom's idea that while Sandro will be about three times the size of his cousins this Christmas, by next Christmas they should be able to play together and be much more close in size.
Hi! I enjoyed your pages very much (so much that I put a link to them in my personal one). We have just received a marvelous gift from the sky : a pair of twins that you can see at my URL. I would be very proud if you include a link to my Twins' page. Kathy : the big sister will welcome you there. Sincerely, Stephane, dad of three wonderful babies and husband to the best wife on earth, Nancy
I am the mother of a little boy named Matthew who was born at 30 weeks gestation. He weighed 3lbs 12 0z. He was born on March 03, 1993. After an emotional pregnancy because of the death of my second child at thirteen months old, Matthew was a gift from God. Matthew was born ten months after the death of my other son Jefferey who was also a preemie. Matthew is now 2 and 1/2 and weights 27 lbs. I'm very glad that there are others who have had successful outcomes with preemies. HOORAY!
Would be happy to talk to anyone..I had a 1 lb,11 oz baby who is now 2 years old...all is well. my email is cedos@aol.com
Hello I'm a preemie looking for more information about preemies. I was born on November 25, 1971. My due date was February 14th, 1972. I was born in Calgary Alberta, at Foothills hospital. I was only 2 pounds 2 oz. I did go down to under a pound one Christmas day. I am curious to find out more information on other preemies and their development over the years. What kind of problems have they had. Maybe even the relationships they have had with their parents. I wish your family all the best. A survivor! Sorry about the spelling! Vancouver, BC
Hello! Hi how are you? first I would like to introduce myself I'm a mother of preemie. It has been a real experience for us. Especially being our first baby. Our son who we named Brandon Kane Wallace. He was born to us 3 months early. weighting in at a good 2 lbs. 2 oz's and 12" long. he is the love of our lives. He was in the NICU for 3months. We were so happy when he was strong enough to come home. At times it would be very difficult for both of us going up to the hospital each and every day. Not wanting to miss a single movement of his little body or of his eyes opening. At moments you would hold back the tears. As you were holding this tiny little being that was not any larger than your hand. Now we laugh each and every day as he looks at us with his precious smile. I thank God every day. Now he is eight months old and weights 25lbs. 9/9/95 Steven and Charmaine Wallace.
I'm a preterm labor patient. My husband and I are expecting a little girl sometime in October. We came *very* close to having our baby at 28 weeks, but fortunately, the doctors were able to stop my labor when I was 2 cm dilated. I'm now on a terbutaline pump which they will take me off of at 36 weeks (October 3rd). Tommy's story was very touching...thank you for sharing it. I'm trying to learn as much about preemies as possible as our little girl will likely be borderline preemie. Our baby has a Web page (we call it her "crib" page) which includes ultrasound pics and heartbeats. Her name is Paige Elisabeth Cermak Baedke and the address of the page is: http://silver.ucs.indiana.edu:80/~sbaedke/baby.html Once again, thank you for sharing your story. Barbara Cermak Baedke
Our son Mikey was born 12 weeks early, weighing 1lb, 12 oz. Until he came off the respirator, I didn't believe he could live, let alone want to. He is now 5 months old (2 corrected) and the nicest baby I could imagine. I suffered from eclampsia. There was a saying on the wall of the NICU at the hospital where he was born, the Ottawa General in Canada: Sometimes to jump a fence, it is necessary to take a few steps backwards. Best of luck with your son.
We had a "Healthy Pre-mature baby" born at 32 weeks. She was 3 pounds 11 ounces and had no complications. We were told our baby was just small and was otherwise normal. Of course, we have found she does differ from full term babies, especially around sleep. We are looking for information and support regarding preemies and sleep. Our daughters difficulty is around self-soothing herself to sleep (she can't) and sleeping long enough to go into NREM (deep sleep). Any info, suggestions, advice, etc. is welcome. Thanks.
Hi folks! Your story about Tommy has given me tremendous inspiration. I have a cousin in New York who recently (2 weeks ago) gave birth to a 1 pound 7 oz. boy at 25 weeks. We were all in shock, as I'm sure you were when Tommy was born. Although inspired by Tommy's story, I'm still scared for my cousin's little boy. He sounds like he's in good shape for a preemie. He had all sorts of CAT scans and X-rays. Now it seems the only major problem is one most common among respirator users -- his lungs have fluid in them. That should be "easily" treated (compared to other major problems). But back to the inspiration. I feel so, so positive that this baby is going to be as perfect as Tommy eventually. Should I be careful not to get my hopes up to high? In your experience, does it sound like this baby has a fighting chance? After all, things don't sound horrible, aside from the fluid on the lungs. I'd be happy to hear from you whenever you get a chance. After today (Wednesday! day) I won't be able to hit the NET till Monday again (I won't be at work till then). If you can respond today, great! If not, I'll wait till Monday. Thanks for all your inspiration and God bless all of you!
I want to wish you all well and to tell you your son is beautiful. As if you didn't already know :-) He is truly a gift of god.
I am the father of 26 week twins, they weighed 2lbs. and 2lbs. 6 oz. they were born in Dec.of '93. they were in the NICU for 3 months. its horrible to think that someone else went through what we did, but it is also comforting to know that someone understands what we went through. everything you mentioned in your article is eerily familiar to me. from brady's and de-sats ,apnea, saturation montirs, we had it all too. I just thought I would drop a line, I was just surfing and happened to land here, please write back if you wish.
I live in Chihuahua, Mexico, I had a 6 month girl, any comments are welcome. Please tell us about new therapies. Thanks, Alvaro & Cecilia Madero
I stumbled on your site while doing a search after work. I had a 34-week preemie son last August (8/9/94). Matthew was born after a pregnancy complicated by low weight gain (I gained a total of 6 lbs. by my sixth month despite my eating a healthy diet),Lyme Disease (6th month), and premature labor at 28 weeks where I was fully effaced and 4 cm. My water broke on 8/8/94. Matt weighed in at a remarkable 4 lb. 14 oz. (considering I only gained 10 lbs.),but had RDS and a bad case of jaundice. He dropped to 3 lb. 12oz. in a matter of a week but started the turnaround after about 10 days. It is definitely an experience I will never forget and am grateful to God that Matt did very well after his homecoming. He gained 8 lbs. and grew 6 inches in the two months after he came home and turned 1 year old last week (95% height, 25% weight non-age adjusted... he's a big-un). We haven't seen any lasting after-effects of either my Lyme disease or his premature birth and is tracking at his adjusted age. People at my workplace (I took six months leave) have asked me if I want a girl the next time... all I ask for is a healthy pregnancy and a full term baby. Good luck to you all and thanks for sharing your experiences.
I am a new grandmother. My daughter who is 20 will be bringing her new son to my home when the baby is released from the hospital. I am looking for information on care and nurturing of premature infants. He's a doll by the way and really doing pretty well. He was born at 28 weeks--2 lb. 12 oz. and is now two weeks old. This past week we have been introduced to the ups and downs in the life of a preemie and his family. He's doing well today. Thanks
I'm so new to the Internet i don't know my e-mail! I came here via America Online, where my address there is VivHood. I saw your page while I was looking for info on preemies, or how to reach parents of preemies. I am starting a magazine geared towards those parents, and would like to ask those parents who venture into cyberspace a few questions. Any idea on how to do that and where? I'd love your input!If you can't reach me via AOL, I'll try to figure out my e-mail and then try you again!
Your "Links to other Baby/Infant....." is very helpful. We are a happy family living in Malaysia and expecting our third child in December. May the Lord to continue to bless you... Best regards, Susan Werk
I had premature twins, Adam and Rachel, who were born 9 weeks early and weighed 2 lb 5 oz and 3 lb 1 oz. It was horrendous but we had a terrifically happy ending - the twins are 3 and doing just great. Would love to chat with other parents of preemies who have lived through the same hell.
I have 21 month old twin boys. They were born at 28 weeks. They weighed only 2 pounds each at birth. Thankfully, they have always been in excellent health. They are always very "fussy". I would love to know other parents experiences.
I've added your page to my new nephew's home page - http://www.dsu.edu/~blackl/dacey.html Great CyberNursery, and touching story! ;-) Linda
Hello! I am simply getting chills running up and down my spine! Your adventures with Thomas sound eerily like ours with our new daughter EMMA! She was born March 30, 1995 at 730 gms/1 lb 9.75 oz and even your pictures show the EXACT same isolette she was in! She came home on June 5th at a weight of 4 lbs 9 oz and is now currently 9 pounds! Even your pictures look like the same ones I took while visiting her twice a day in the hospital! Even the stories about the different nurses ARE THE SAME! I would be delighted to tell you more, if you want, about our own adventures! I can hardly wait to show my wife, AND EMMA, your stories! Greg Fanning
My sister-in-law is in the hospital as I write this. She is in the middle of her seventh month and has started having contractions. She is carrying twin boys and I am way down here in Florida and am so worried about what's happening. I don't know anything about preemies or even if there is a possibility of twins surviving delivery. But my major concern is her. She is an incredibly strong woman. She's 35 and this is her first pregnancy. Can you share any experience, strength or hope that I might relay to her? This is so hard and I feel so lost. I appreciate your time. Sincerely, Patty Doherty PS You have a lovely baby.
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