The Messages Just Keep Coming!

Hi Tommy:

This letter is really to your parents. I would like to thank them for providing your story and this message center. My son Aaron was born on October 27, 1994 at 27 weeks. He weighed 799 gm ( 1 lb, 12 oz) and was 13 inches long. He came home 3 days before his due date after 3 long months in the NICU. Like you, he is now doing just about what he should be doing for his corrected age of 12 and a half months.

Hi Tommy:

I am a NICU nurse in a level III nursery in Oklahoma. I am so impressed and happy to have stumbled on to your page. It thrills me to read all of these stories and to know my profession is doing such good work. If anyone happens to know of addresses of companies that manufacture products for preemies I would appreciate their address. I find that most of my parents feel more in control and helpful if there are things they can get for their child. Pacifiers for preemies are extremely hard to get hold of. Ross Labs makes some but I would prefer something more orthodontic is possible for my potential breast feeders.

The progress I read about in these "pages" are so great, God Bless you children and parents!!!!!

NurseNicu@xmission.com

Hi Tommy:

Your story has explained much that we need to know, so thank you to you and your parents. We have triplets in NICU right now: Eddy (3 lb 4 oz), Lily (3 lb 6 oz) and Jimmy (4 lb 4 oz). They are doing well so far, and we pray that they will continue to do well. NICU is a scary place, and we wish we could take our babies home.

Thanks again for sharing your story.

Hi Tommy:

Just wanted to say "Hello". My wife gave birth to a 24/26-week little boy on Feb 10. He was, by dates, 24 weeks, but the neonatal doctor evaluated him to be 26 weeks developmentally. I am printing your story to both learn and encourage myself and my wife.

Tom Hannah
TOM@CLEMSON.EDU
TOM@MOTHER.CLEMSON.EDU
105 Heathwood Drive
Liberty, SC 29657

Hi Tommy:

Thank you for this valuable site!! Alexis was born 10 weeks early and weighed 2lbs. 1oz.. At six months old, she is doing well we are somewhat concerned about CP. We are working with specialists however. My goal after her stay in the NICU is to educate parents about the possible problems with feeding tube misplacement in neonates. There is a great lack of research and many children being harmed by misuse. I am looking for other parents who have had children harmed by misplaced feeding tubes and would appreciate any guidance on a forum for reaching these parents. Thank you for all you have done for parents of preemies!! Please feel free to use my name and e-mail address to further this cause if you have a method of doing so.

ska000@netzone.com

Hi Tommy:

I'm so glad to hear that you are making such great progress! Keep up the good work (it sounds like you have terrific parents, too!) I wanted you to know that I have included your WWW site in a course syllabus designed for pediatric nurses. Your mom and dad's account of what your birth and first few months were like will be very helpful to students who are learning about caring for premature infants and their families.

Hi Tommy:

Here's an update on Caleb and Leah, born at 27 weeks in September 1995.

They're 5-1/2 months old (2-1/2 months corrected) and just had a wonderful follow-up visit with the neonatologist.

Caleb (born 2# 4.5 oz.) now weighs 12# 13.5 oz. Smiles, talks, and is very interested in his surroundings. He has been off oxygen for a month.

Leah (born 2# 3.5 oz.) now weighs 11# 2 oz. She is a very social young lady, loves to visit and just be cute. Her posthemorrhagic hydrocephalus remains stable. Her fontanelle is very soft, but head circumference remains at about the 105th percentile. We were told, surgical intervention for progressive hydrocephalus is now very remote. Thank GOD!

Both have grown through their ROP (visually appropriate) and are developmentally appropriate for 2 month olds. We're now weaning off the Theophylline. Hopefully we'll be able to get rid of the apnea monitors in the next month or two.

It's been a tough 5-1/2 months. Especially dealing with the implications of the hydrocephalus. We've been fortunate to find a number of resources to help us through this difficult period. Tommy's story was very reassuring as well as support received through the "Our Kid's" list", "Hyceph-L" list, and information provided by the Hydrocephalus Association. Thanks for being on-line.

Steven F. Holle

Hi Tommy:

Reading these stories lets me reflect on Dec. 10,1994. Myself being 24 weeks pregnant and looking forward to having an ultra sound done the following week.

That night I awoke to find myself going into labor. Having contractions and feeling fine. After awaking my husband and paging our mid-wife. She made the decision to meet us at the hospital. Leaving home to go the hospital seemed to be a dream. The thought of having a baby did not even cross our minds. I was a healthy young mom to be. I was doing all the stretches, eating all the fresh fruits and veggies. After arriving we both walked up to the delivery floor.

After being examined by the doc. we were told that we were going to have a baby!

It never hit us until I lay in the OR getting prepped for a c-section. David stood beside me and held my hand the whole time.

After it was all over with we had us a large 24 weeker, 1lb and 12ozs. Sean Gabriel, we named him, it took a couple of days to come up with the name.

We were in Brenners Childrens Hospital for about three months, then was transferred to Greensboro. The NICU was incredible. I spent all my days learning as much as possible. I learned alot!

Today little Sean sits here on my lap and wants to bang on the key board.

Sean is now over 20 lbs and is ready to walk soon. I would do it all over for him!

Thanks so much for your stories,

God Bless, Dawn and Sean :)

Hi Tommy:

Thanks for sharing your story with us.

We are the parents of David, born at 24 weeks in Miami, Florida on April 23rd, 1995. We went through the ups and downs of any preemie parent and the ride isn't over yet. Nevertheless, we are overjoyed to have David with us back here in Geneva, Switzerland, where we live.

He's doing great now and I'll gladly follow-up with his story some time soon.

Thanks again and take care.

Hi Tommy:

I am a freelance writer and often write on the topic of children with special needs. I am interested in locating some additional sources of clothing for premature babies. I would appreciate any information that you would be willing to share, whenever you get a chance to respond. Thanks

Danielle

Hi Tommy:

Hi my names is Tammy Trent. I was just looking around. I thought I would say hi. I have a 2 year old daughter. Her name is Brittany Noel Barrick. We call her Tweety or Little Princess. Thank you for letting me look around for a while. I am on my boyfriends computer so I don't have a email yet but when I do I will give it to you.

Hello Everyone:

Our daughter was born 4lbs 4 oz as a result of my having HELLP Syndrome. We are both fine now but went through many of things everyone here has. I am especially interested in hearing from any of you who had HELLP Syndrome. I would like to find out more. I have had trouble finding much of anything. Does any one know of a source of info on the WWW?

Look forward to hearing from you!

Susan Murie

susanm@xensei.com

Hi Tommy:

Well, I have four premature babies who were born at 30 weeks. Yes, they are quadruplets. They weighed in at 3lbs,3oz., 3lbs, 2lbs,lloz, and 1lb,lloz. We experienced many of the usual problems: RDS, hernias (3), IVH bleed (grade I), A and B's, etc. We were very lucky, however.

Our boys are almost four years old and doing great. They are all in a special needs preschool for speech delays, but are making a lot of progress, and I fully expect them to all be in a regular kindergarten class in a few years. They have no other problems except a speech delay, which is partly from competing with three brothers for Mom's attention.

Thank you for a wonderful site.

Hi Tommy:

My daughter was not born prematurely, but needed some surgery at birth, she stayed in NICU at Riley Hospital for children in Indianapolis. It was the scariest week of my entire life. I know how relieved your parents must have been to bring you home, because bringing my daughter home was the best thing that ever happened to me :)

Good luck to you, I'm glad to see everything worked out so wonderfully for you ;)

Hi Tommy:

Well, Tommy when I first found your wonderful Hallway my twin daughters were just 6 months old, and although we were still with heart monitors and a couple of medications they had come an extremely long way from their 2.5 lb birth weights.

Now, I am happy to report that Alexandra and Victoria celebrated their 1st birthdays this past Sat. With many family members and friends in attendance, they toddled about, opened packages, and happily "smooshed" their first birthday cakes.

The girls are our little miracles, but the first year of their lives was both emotionally and physically exhausting for their parents. To try to explain what it has been like to someone who has never been through it is nearly impossible, and that is why your Hallway is so rewarding.

Continue to be happy Tommy, you are a remarkable little boy.

Hi Tommy:

My name is Christohe and I am a 27 weeker born on January 25 1995. I weighed 1 pound 9 ounces and was 13 inches tall. I live in Quebec, Canada. I spent the first 4 months of my life at the Hospital going through Chronic lung disease and low weight gain ( I weighed only 3 pounds at 3 months ). I'm now 12 months old and weighs 18 pounds. I go cross country skiing with my mom, take swimming lessons and even went on a trip to Florida. Good luck to all the parents of preemies, these kids are great.

Josiane.

Hi Tommy:

A few days ago, I sent you an e-mail regarding my son born Dec. 14, 1992, at St. Luke's Hospital in Kansas City, Missouri. He was only 23.5 weeks in gestation when he was born due to my life-threatening condition called pre-eclampsia.

I accidentally gave you an e-mail address that was changed the day after due to the set-up, so if your parents have tried to respond to my e-mail, they wouldn't have been able to reach me. I have now loaded the correct e-mail address in the requested area for future use, if the need should desire.

I wanted to tell you about a project I was involved in, as a parent, while my son, Xavier Christian, was in the hospital. I am always an advocate for non-invasive research, and was approached by the developmental specialist at the hospital about working on a project that studies the importance of "human touch" in preemies. They believe, I as do, that the babies have a much higher chance of survival if the babies' have more human touch, versus being left alone and not touched as much as possible. It was very interesting.

In addition. I was also involved in another study in developing what is called a "Transition Planner" for parents of preemies or babies born with severe problems. This planner is a way for the social worker, the developmental specialist, and the parents to discuss the child's current and expected abilities, allow the parents to talk about their emotions, concerns (including finances with the large bills, their marital relationship and the stress incurred due to the situation, setting up the resources needed--if any--for after the baby is released to go home, and anything else that may be needed.)

In all, there are 8 different sections/topic areas to cover with parents. My husband and I (as brand new parents) found the "Transition Planner" to be extremely helpful for preparing for the transition from hospital to home. As all parents of preemies know, it's very difficult to go from having the safety and security of the hospital staff/doctor's/specialists available, to being completely on your own.

I'm not trying to put a "plug" for this through this e-mail, but it is a tool that I found to be practically essential for learning everything necessary in preparing for home, as well as getting things out in the open that are concerning you about anything and figuring out a way to deal with them.

Would you have any ideas on how to promote this tool to NICU's? This is something I firmly believe in and want to help the people who developed this tool to get it out for use.

I understand you have a lot of e-mail's to read, but if you could really take a moment to think about this, I'd really appreciate it.

Thanks,

Andrea O'Brien

Hi Tommy:

I am a new grandma of a beautiful little girl. Her name is Jordan McKnight and when she was born she only weighed 2lbs. 9 oz. She was about 8 weeks premature, but she is coming home soon and weighs over 4 lbs. I am also a student at Boise State University and I have chosen for my semester topic to write all of my papers on Jordan and preemie care. Any help that you could give me would be wonderful. I am really new at the Internet, so I hope that you get this message.

Good luck and God Bless.

Debra

Hi Tommy:

My name is Troy (a 34 weeker), now 7 mos old (5 1/2 mos adj) and my brother's name is Mitchel (a 35 weeker), now 4 1/2 yrs old. We are both NICU graduates of Rose Medical Center in Denver, CO.

My mom read your story and the stories of all of your friends. She was amazed at the number of babies and families that have survived our same ordeal with complicated pregnancies, births and infancies. Mitchel shows very few signs of being a preemie, he battles respitory infections when he catches colds. The Dr's officially classified him as "caught up" when he was 9 mos old!

I, have a little way to go, I am currently battling RSV and still have some developmental problems. Thank You for your story and keep up the good work!

God Bless you and your family.

Troy Daniel and Mitchel Anthony

Hi Tommy:

I am also a parent of a preemie born at 26 weeks 1lb 12 oz. He is now a very healthy and active little boy. At the time 4 years ago, it was probably the most scariest time in our lives. We didn't know whether he would live from day to day.

He was, a victim of an pneumonia after only one week in the NICU. He was on the respirator for 1 month and in the hospital for three months.

His ability to suck was terrible and needless to say to this day feeding is a chore with him. My husband and I have gone through so much that the thought of having another child is difficult. If anyone out there has had a preemie and then has had another child at full term I would like to hear about their experiences.

Thanks again,

Angela & Ioannis Moutsatsos

ioannis@mci.newscorp.com

Hi Tommy,

I have a son, Nicholas, who was born a 29 weeks gestation on June 15, 1995. He's doing great. I'd like to send you another letter after I read your story.

I've printed out letters sent to you and I'm anxious to read them.

Thanks.

Rosanne Smith

Hi Tommy:

My name is Nancy and I am presently pregnant of a little boy which is 26 weeks old. He will be named "Nicolas" as I am a French Canadian.

I tried not to read the hole story, but it was impossible. I wanted to read what happened to you and what you went through.

I just want to tell you to be courageous, that the sun always shines, even if there is some clouds above!

Please, excuse my poor English, I'm trying to improve myself sometimes...

Best wishes of health and happiness!

Nancy and Nicolas!

Hi Tommy:

Sorry I am new and don't know if the address is correct.

My daughter Hannah was born 16 weeks early and weighed 1lb 13oz, she then dropped to 1lb 4oz. What a precious site they are to behold. Just like an angel from above. Of course it is always touch and go with these little ones but we were very lucky with her. She had no major problems and even her heart valve never stayed open (I'm sure you know what I'm talking about).

She was in the hospital 79 days with no major setbacks.

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