Tommy Gets Mail Every Day!

Hi Tommy:

We are glad you are doing fine. We are parents of a little angel named Austin Blake Buchanan. Austin was 4 weeks early but was diagnosed with hydronephorsis and an enlarged kidney during pregnancy. When born he was at normal weight and length 6 pounds 12.5 oz. and 20 3/8 inches. He was born at the University of Tennessee Medical Center and got to come home three days later. Since then he has undergone one of two to threes surgeries to correct his urinary tract. Both kidneys are functioning but not at a normal rate. He has recently undergone an uterostomy surgery in which his uterer has been brought to the outside so that it will drain properly. Our prayers are with you and your parents and we ask you to say a special prayer for our baby boy.

Barry, Missy and Joshua Buchanan
 

Hi Tommy:

Leaving a message again, I think.

Last time must have been in the beginning of august if I did it. Last July our Sam arrived almost 11 weeks earlier than we expected. It was a chock for us, and as we found out, none around us had ever been in a situation like that, it wasn't easy.

I had just got on the net and I tried to find something there. And what did I find. Tommy and his story. It was wonderful, if I can use that word to see that there is other parents in a similar situation.

I printed out the pages and went back to hospital where my fiancé, still was at and showed her what I found. We both enjoyed reading the story of Tommy and the progress he made, that put some more beliefs in our Sam. He is now 7,5 months old and doing great. I have finally started a homepage myself, it is not yet complete but stop by, and read the story of Sam and his escapades

Love

Thomas &Liz & Sam

Thomas & Liz
 

URL of Interest: Sam´s Homepage

Hi Tommy:

My name is Anne Suter and I have a daughter who is also a 25 weeker. Amy was born on December 12, 1995. Her due date is March 22, 1996. Amy was a twin. Her twin brother Andrew was stillborn on Nov.22, 1995 and somehow Amy managed to NOT be born at the same time.

I was on bed rest for 3 weeks (something you know a lot about, Tommy) trying to hold Amy off but she insisted on being born. Amy was born breech and she came so rapidly, the doctors couldn't have said c-section, much less had time to perform one.

She weighed 1 pound, 7 ounces. She had a PDA repair (tying off an open duct on top of the heart) on 1/3/96. She has had pneumonia 3 times. They tried CPAP on 1/26/96 and she lasted for four days but she was using all her calories to breathe and her lungs were beginning to collapse so she was reintubated and put back on the hi-speed ventilator. She started out in the NICU and "graduated" to the Intermediate ICU when she was 8 weeks old.

She is now 12 weeks old and tomorrow, they are going to try to wean her from her vent and put her on CPAP again.

Amy gets breast milk through a tube. She is up to an ounce of food every 3 hours. She likes it and now weighs about 4 lbs, 3 ounces. Amy has managed to avoid any head bleeds and has a mild retinopathy of prematurity, but this improves every time the ophthalmologists come to check her. Our Amy is a feisty redhead.

At our hospital (the University of Iowa Hospitals and Clinics) parents are encouraged to kangaroo their preemies. We've been kangarooing since Amy was about 10 days old and its really nice. We also give Amy baths (cotton ball baths) and I'm learning how to give preemie massages.

Amy has an older sister named Molly who will be 3 on May 1. Molly has seen Amy only once and she would like to see her again but the nurses say "no". We don't know when Amy can come home but if she stays on CPAP, then she's taken a big step towards towards homecoming. We will use you as a role model for Amy and hold you up as an example. Tell your parents hello and thanks for this Web site.

Anne

Hi Tommy:

I am updating you on Quintessa Jazz born Oct. 2'95 at 1 lb. 14 oz.

Tessa is at home and doing well. She has been hospitalized only once, in January, for viral pneumonia. She was in the hospital only a week, and her parents are glad she is back home. Tessa is still on oxygen (cpap), and at 5 1/2 mos. (uncorrected) she is beginning to respond by smiling, and some cooing.

I am the proud grandma, and wish that I could see Tessa and her family more often. Grandpa gets to visit her this weekend for the first time since he saw her at birth. He is very excited about seeing her.

I'll write again in a few months to let you know how Tessa is doing.

Ruth L. Guengerich
 

Hi Tommy:

My name is Alison I was also born at 25 weeks. I weighed 1lb 12 oz and was 13 3/4 of an inch long. I was born on Halloween of 95. My mom was a young mother almost 18 when I was born but she seemed to have a healthy and normal pregnancy. My mom was rushed to the hospital where she spent 7 days hooked to iv's and given many medications to stop the contractions. She also had to remain in bed tilted so her feet were higher than her head. After 10 hours of labor I was born by natural childbirth. I was immediately intubated and put into an incubator. I had a grade four brain bleed and had to have surgery to close my patent ductus. I never had to battle any illnesses. I never had a critical moment.

My mommy and daddy spent many hours a day holding me, talking to me, and singing to me. They never missed a day. By early December I was extubated and but on a nasal canula. And early January I started to drink from a bottle. All the doctors and nurses marveled about how well! I was doing.

The four month predicted stay at the NICU only turned out to be 2 months and 11 days, 1 month and 1 day before my due date. I was sent home with oxygen but march it's coming off. I am now almost 1 month corrected age and I am doing very well. I now weigh a little over 8 pounds and I love to eat. My mom calls me a little stinker because my favorite time to play is in the middle of the night. But I'm a good baby and my mom and dad love me very much. I was very happy when I found the CyberNursery.

We don't know if Alison will have any long term affects with her brain bleed. We are grateful just to be able to hold and love her. We thank god and the wonderful doctor's and nurses at United and Children's hospital in St. Paul Minnesota. We are so happy to hear your success story. We wish you nothing but the best in your years to come.

Becky McClymonds

Hi Tommy:

My son, Jared, was born at 28 weeks weighing 2 pounds 3 ounces on April 15, 1995. He came home on July 10, 1995 (his due date) still needing some oxygen and receiving gavage feedings for about half of his feedings. He suffered a grade IV intracranial bleed and was on a ventilator for almost a month.

It is so encouraging to know of others who have gone through similar experiences. Best wishes to you and God bless.

Lori Davenport
 

Hi Tommy:

I am the mother of a 10 month old little girl named Katie. She weighed 4 pounds 4 ozs at birth (a real big preemie, actually). She is doing very well except for some food allergies and the occasional nasty respiratory infection (they seem to stay for weeks!).

I am so glad things turned out well for you. We are so very fortunate to have such high quality care available for preemie babies today. Thank you for sharing your story - you and Katie both will have quite a few stories to tell about yourselves when you are grown, I am sure! While all babies are special, there is something extraordinary about preemies and the obstacles they overcome...best of luck to you and all the other preemies and their parents out there in cyber-land.

Virginia Cairns
 

Hi Tommy:

I hope that you are being a good boy. I'm so glad that you are doing well. I have a little boy who was born premature just like you. He was born on June 22, 1995 at 28 weeks gestational age. He weighed 2 1/2 pounds and stayed in the hospital for almost 2 months. He's doing just fine now. At 8 months old, 5 months adjusted age, he weighs between 16-17 pounds. He's a very happy, healthy baby now (knock on wood).

Like your parents, My husband and I went through a lot of emotional hell. I don't drink or smoke and never had a day of morning sickness. One day, I just started having what I thought were cramps and delivered late that night. I was mad at the God for "doing" this to me. After all, alcoholics and mothers on crack deliver normal babies every day. I couldn't understand how God could let innocent children suffer like mine was with a tube down his throat and an IV in his head. I visited my baby in the hospital every day for 2 months.

In time as my baby got stronger, I learned to accept what had happened. I no longer wonder what happened, but just thank God that my son is alive. As said in many preemie books, premature children are special in that they have an inborn will to live. Having this baby early also made me remember how precious life is. His crying does not bother me, for I am glad that he lived to do so.

My first pregnancy was not what I had expected, but it is one that I will definitely not forget.

Congratulations to all the parents who survived this ordeal.

Hi Tommy:

You guy's are great. I don't see how ya'll did it. My daughter was born two weeks early. She was admitted to Children's hospital in D.C for a week. She had problems breathing. Plus she had shallow breathing. And a low heart beat. When we bought her home she was on a heart monitor for 5 months. Now she is 2 and doing great. Haven't had any more problem with it since. She was born on 11/18/93. She weighed 6 pounds even. Now she weighs 39 pounds Thank you for letting me visit your page. The best of luck to you and your son. Hope things work out for the best

Tammy Trent

Hi Tommy:

You're a survivor! After the entrance you made into this world, the rest of your existence will be a breeze. My son, Derrick, was a 25 weeker (1lb, 9 1/2oz) born 2 years ago (12/18/93).

I feel I have rather thoroughly explored the Internet on preemie- related information and was hoping your parent's could give me some guidance.

My son is doing exceptionally well. He is physically as healthy and flourishing as any 2-year old...no handicaps or problems of any sort. He is cognitively developing steadily. He clearly understands words, responds to commands, recognizes objects, and tries to communicate his desires to us. However, Derrick is behind in actual speech. He only speaks a handful of words, although he is still showing steady improvement in this area.

I am confident Derrick will eventually catch-up in the speech arena, just as he has in the physical arena. I'm interested in hearing more about this topic and was wondering if you were aware of anything. Do you feel it would be beneficial for me to join the preemie-l discussion group? I'm specifically looking for info that will help us to foster his speech development, as well as some accounts of how other 25 weekers have developed as far as speech is concerned so that we have some sense of relativity.

I would appreciate a response if you can give me some suggestions (or if you have time -- I'm sure this page is very demanding). And good luck Tommy!

Thank you,

Dave Scholz

Hi Tommy:

Good to hear your story, and must say I am finding your story, and many others interesting as I am presently trying to write an essay on abortion, the law states 24 weeks as maximum limit for termination of pregnancy and I am sure that babies have survived before this period. I do not wish to involve you with politics, but would appreciate it if you could forward me any reference to such a case.

Wish you all the best,

Andy Elliott

Hi Tommy:

Our son, John Chi-Lone Wong, has born at 25 weeks weighing in at about 2 lbs on April 6, 1995. He stayed in the NICU at Queen Mary Hospital in Hong Kong until August 4, 1995. It's hard to believe that he's going to be 1 in about 5 weeks.

We wished we had discovered your Web site earlier. Reading through your progress and the letters from your many visitors certainly brought back many memories for us. It's amazing how similar preemie stories are all around the world. We intend to let the staff at Queen Mary Hospital know about your site and pass this information to the parent support group there.

All the best to you and we hope that your Daddy will keep us all updated on your progress on the Net.

Ming & Mei Wong
Hong Kong

Hi Tommy:

Sorry to write since I'm NOT a full time NICU mommy. However I am a NICU nurse and feel like a mommy to 56 babies sometimes. I wanted your mommy and daddy to know how much I enjoyed reading about you and seeing your pictures, and how happy I am that you're doing well.

Your daddy seems to have a very good grasp of NICU care (I'm sure mommy does too) and his explanations of CPAP and ROP are right on the money, as he seemed to wonder.

Great job Dad! I wish all parents would be as involved as you two obviously are. While I'm sure this has been the most trying experience of your lives, I appreciate the insight I've gained reading about it. I'm also a little surprised that although we are geographically quite far (Norfolk, VA) our NICU's seem all but identical in many ways. I'm also encouraged that many of my perceptions of NICU parenting have been somewhat validated by your descriptions of the experience.

Thank you for sharing! If you don't mind, I will share your CyberNursery site with parents of preemies in our unit. I hope they might find strength for themselves in the strength you share.

Good luck, I look forward to Tommy's further adventures here!

Tiffany Kucifer, RN Children's Hospital of the King's Daughters

Hi Tommy:

I believe I wrote to you once before but I will recap.

Hannah was born on August 11/95 weighing 2 lbs 1 oz. She has done incredibly well, now weighing almost 11 lbs with no signs of any abnormalities. We do have a problem however. Her doctor is always pushing us to feed her and that's not a problem except that she is a VERY fussy eater. (She does not want to eat much at all and therefore is not gaining as much weight as everyone would like. Just wondered if you or anyone else you have been in contact with has had similar problems with a preemie and might have any advice.

Oh, you have a great page!

Hi Tommy:

I am writing to you, not as the parent of a preemie, but as a developmentalist. (Thanks partially to plenty of warning, bed rest, and medications, my "preemie" was only 6 weeks early and quite healthy from the start.)

Thank you for a wonderful Web site -- your page is so well done and informative. I'm sure it has been a great help to many parents, and I wanted to you to know that relating your story in this way allows professionals working with these families to benefit from your experience as well.

I am a developmental psychologist with Emory School of Medicine in Atlanta. I am part of an interdisciplinary team which provides developmental follow-up for high-risk infants after they leave the NICU. I would be interested in hearing about your experience with the follow-up services your son was provided. I would also like to hear from any other parents who would like to relate their experiences with developmental follow-up from a parent's perspective. As often the injuries sustained perinatally do not become apparent for months or even years, the task of identifying the resulting disabilities and educating parents regarding implications is frequently handled by a follow-up clinic such as ours. I am aware that many high-risk children are not followed closely and, consequently, opportunities for early intervention are frequently missed. On the other hand, it is also difficult to provide good follow-up services without giving the family the impression that problems are being anticipated. I am interested in hearing how parents perceive this process and would appreciate any suggestions on making follow-up a more positive experience. (You may use my E-mail address and any parts of my message that you wish.)

Best Wishes,

Sheena L. Carter, Ph.D.

Thank you so much for writing your articles!

I am the mother of 2 preemies named Samantha and Joshua. Unfortunately they both died shortly after birth.

Samantha weighed in at 1 pound 6 ounces and Joshua weighed 12 ounces. However, our time with them both are precious memories.

Samantha lived for 5 weeks and we were on a never ending roller coaster ride from her birth on. Joshua only lived for 23 minutes. Both of my children were born between weeks 23 and 25.

Thank goodness that the medical technology advances everyday for parents who have premature children and that there is hope for children born at very low birth weights.

I would like to tell everyone that has a child in the NICU not to give up hope.

Spend every minute that you can with your preemie the rewards are great!

Hi Tommy:

Thanks for your link to Vincent's page - it's helped us meet lots of other preemies out there.

We have established a discussion group for parents of preemies - loosely defined as babies born six weeks or more before their due date. People interested in preemies are also welcome.

we would be grateful if you could put a link in somewhere in your CyberNursery.

Below are the details for the group:

Subscribing

To subscribe to this group, email to majordomo@vicnet.net.au

Leave the subject line blank, and put

• subscribe preemie-l youremailaddress

as the first line. (Of course, put in your own email address instead of youremailaddress). You should get a brief message back welcoming you to the group. If you have any problems, email garyh@vicnet.net.au.

Posting

If you have anything (introduction, comments, questions, etc.) that you wish to distribute to all members of the preemie-l group, send it as e-mail to preemie-l.vicnet.net.au

If you have any problems email me garyh@vicnet.net.au

A homepage for the group is at:
http://www.vicnet.net.au/~garyh/preemie.htm

Members of the group are interested in exchanging information and opinions on a range of issues. For example, one member wants to chat about "developmental delays, the developmental tests and my opinions about them, feeding issues, how other preemies are dealing with the outside world. And lots more."

We hope that through this list we can offer each other support and the benefits of a wide range of experiences.

If you have a parent of a preemie or interested in issues relating to their care and development, please join up. Custom is to send a brief introduction which we will add to the page of participants.

Best wishes

Gary Hardy and Anne Casey

URL's of Interest:
preemie-l discussion group home page

Hi Tommy:

I'm the proud mother of a 7 month old miracle girl, Bethanie. Bethanie was born June 26, 1995 at 31 weeks and weighed 2 lbs, 7 oz. Bethanie stayed in the hospital for 5 weeks because of her weight. She had no serious medical problems. The nurses in NICU, nick-named her wiggles, because she never stopped moving. Until this day, she still moves all the time.

She has been my traffic stopper. Taking her out into public has always been an extreme joy. It only takes one person to admire how small and beautiful she is and then everyone else comes over to admire her.

As a single mother, I have been very fortunate that she has not developed any serious medical problems. Not even the common cold.

Bethanie is now an alarming 13 lb, 14 oz. crawling little lady that is only a little small for her age, but an extremely HAPPY baby.

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