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Hi Tommy:

I was so glad to see this page on the Web! A close family friend just had her baby a week ago. He was 16 weeks premature and weighed 1 lb, 8ozs. I was not even aware that babies that small had a remote chance of survival! I am so glad to see that not only can they survive, the stories here show that many of them have happy, healthy lives after the initial struggles. Thank you for this source of encouragement!

Hi Tommy:

My name is Kelly Nix. Congratulations! Once I was as small as you and look at me now! I'm almost 5! This year I'm the 1996 Ambassador Child for the RI March of Dimes. I will help them raise lots of money for research.

Hi Tommy:

I am the dad of Rebecca, born at 24 weeks. She was 1 lb.11 oz. She is now almost 1 year old 8mo corrected and doing really well. I am interested in being of support to the parents of new preemies.

We were through a lot and we feel very fortunate.

How are all of you?

Does any on have any experience with vocal chords, Becca has her third visit with ear nose & throat doctor on Mon. Chords are much better but still weak.

War Stories?? We have them.

bye bye

URL's of Interest:

Homepage

Hi Tommy:

I am the mommy of a little boy who was born at 23 1/2 weeks of gestation at St. Luke's Hospital in Kansas City, Missouri. He weighed barely 1 lb. 3 oz., and dropped to 15 ounces before beginning to gain weight. His name is Xavier. I suffered from a rare condition called sever pre-eclampsia. The only way to not let the disease kill me was to induce labor and deliver Xavier. Essentially, the doctor's were attempting to deliver him in order to save me. I was given Vitamin K and steroids to attempt to develop Xavier's lungs prior to delivery, in order to attempt to increase the slim chances he already had to survive. We were given very grim statistics: less than 5% chance of no problems occurring; a 90% chance of an inter-cranial hemorrhage, developing cerebal palsey, or even having normal vision and hearing.

I went to the hospital the day of my 5th month doctor's appointment, when we were planning on doing a sonogram to see Xavier for the first time. I knew I didn't feel good, but I didn't think I was critically ill, and on the verge of having a stroke. Needless to say, my husband and I were hysterical!!!

Xavier was born and intubated immediately, and remained intubated from his birth on Dec. 14, 1992 until the end of Feb. 1993. He had a mild case of necro-endocolitis, which was caught early enough so no complications occurred. His eyes were developing retinopathy, but that also cleared up without explanation. He was diagnosed with partial hearing loss in his left ear, but that also cleared up by the time he was 5 months old, and he now has perfect hearing. Needless to say, we are extremely fortunate to have a guardian angel somewhere. Xavier continued to improve, and was release to Children's Mercy Hospital to repair a double hernia he had developed due to his paper thin muscles. He was released to go home on oxygen on April 8, 1993, 115 days after birth. Yes, his daddy and I were scared, but so relieved to be able to just have him home.

Xavier just celebrated his 3rd birthday, and is doing wonderful. He has absolutely no special physical or mental needs. Well, I take that back. Xavier loves to be held, kissed, played with, and told "I love you." But doesn't everybody have those needs? I certainly do.

I must say that the experience is the most difficult thing I have ever had to face in my 28 years. However, it has made me a stronger person who is much more in tune with the finer things in life: CHILDREN.

You may use my email address to let people respond, if you wish. I am not a doctor. I'm getting my Master's degree in business. But I am continually keeping abreast of preemie issues.

Andrea O'Brien

jgobrien@falcon.cc.ukans.edu

Hi Tommy:

My husband and I had a baby boy by C-section on 12/21/95 at 26 weeks gestation and weighing in at 910 grams/2 lbs even. Your description of the NICU/Special care nursery is right on target. Our son, Matthew Justin, has had a very similar course as you. He had a honeymoon period of about a week during which he required only CPAP for the most part. He was then intubated for about a week. He was extubated 2 weeks ago and has been doing well on CPAP. His main problem has been "spells" during which he would desaturate and turn a God awful color of gray or blue. My husband and I are both physicians and it would scare our pants off.

Thankfully he's better now. Most recently he developed "maybe NEC" or necrotizing enterocolitis, basically a bad bellyache. He had been on full feeds up till then, so it was an unusual time to develop this problem. Other problems that have been very similar to yours has been that Matthew also developed positive blood cultures at 2 weeks of age. He also has required steroids in order to wean from the ventilator.

He has been very slow to gain weight and is only 1050 grams/2 lbs 5 oz to date. This is the very frustrating part for us. I imagine he will eventually get bigger. Can't hit age 25 and stay under 1100 grams, can you? Anyway, I'm sure there will be other challenges ahead as we wait for him to come home, but wait we will.

I just wanted to say that we LOVED your CyberNursery. Surfing the NET has given us a lot of inspiration and encouragement. You've probably checked out Max Isaac L.'s Web site as well. He was in the same nursery as Matthew is in now. Hopefully Matthew's outcome will be as good as yours and Max's.

Good Luck and Stay Well.

Tina Veloso and Tom Haronian

Hi Tommy:

You have a wonderful site.

I lost my first baby at 20 weeks due to an incompetent crevix. Three months later I was pregnant again and had a cervical suture until 25 weeks when my water broke and the suture was removed. I was hospitalized and given 2 shots of steroids, and remained in bed for 40 days when I went into labor and my son ALON was born by cesarean (he was breech) on Dec. 23, 1993.

He weighed 2015 grams (more than 4 pounds) and was huge for a 30-31 weeker. He was intubated for one night, given oxygen for a few days but had no other problems. 4 weeks later he came home and today is a healthy happy "terrible 2".

It has been a difficult and frightening experience but having him has made it all worth it.

It is comforting to read other people's stories, and it is easier to share these experiences with people who can relate to them instead of being horrified by them.

All the best to you and your family

Carmela

cp@eliashim.co.il

Hi Tommy:

My son Zachary was born at 23 weeks gestation. He weighed 1 pound. He has had no head bleeds. He was in the hospital 5 1/2 mos. He is currently back in with a cold. So I can't right too long a note. It is a pleasure to see more information from parents of preemies.

Hi Tommy:

My son was born by cesarean on 7-2-88 at 28 weeks approx. weighing 1370gms. He was `due' on 27 April that year but owing to having ruptured membranes after a CVS biopsy for Down Syndrome at 7 weeks (previous sibling has D S) was expected to miscarry, especially after hemorrhage at 18 & 23 weeks. He survived 28 weeks in utero with little or no amniotic fluid & I was given surfactant-producing steroids before delivery. He needed minimal ventilation but suffered several lengthy bouts of jaundice and a temporary (unexpected and unaccounted-for) liver failure at 32 weeks. He came home at 38 weeks of age. From this time on although relatively healthy (several temporary hospitalizations for asthma etc.) his behavior was very strange. He resisted eye contact & physical contact and cried incessantly. Physical development continued normally or better but attachment- wise he was very odd. He refused comfort & contact, did not like to be played with, and was incessantly active and frequently hurt himself. As he got older he began to exhibit signs of `hyperactivity' , settled poorly at kindergarten and interacted badly with other children. School was punctuated by episodes of abysmal and sometimes violent behavior. At age nearly 8 he still has immature peer relationships and cannot concentrate, has not learnt to read. Latest guess is ADD or borderline autism, but I feel he is brain damaged due to lack of oxygen in utero. There don't seem to be any long-term follow ups of psychological/psychiatric health in preemies - at least I haven't seen any - has anyone else ??!! I have spoken to a few other preemie parents but this appears to be something different. Any comments appreciated!

e-mail micky.stevens@natlib.govt.nz.

Hi Tommy:

My name is Kayla, I live in Virginia. I was born July 14, 1995.

I am also a NICU graduate. Your story made my parents sad remembering how life was back then. The long trips to the hospital everyday, and the endless waiting for good news. I was born a day late, weighed 7 lbs. 11 oz. and was 20 1/2" long, but because of a long labor I got sick. During delivery I swallowed amniotic fluid and contracted pneumonia. I was lucky enough to go home much sooner than you. Thanks to the wonderful care I received I recovered very quickly. I am glad to hear that you are doing so well and I enjoyed your pictures.

Hi Tommy:

We are parents of an angel, Chandler Alexis Hammons. She was born February 12, 1993 at 26 weeks. She weighed 1lb 7oz and was 12 inches long. After reading so many of the messages we realize she is not the youngest nor the smallest. Due to the wonderful advancements in NICU, Chandler did great. It was slow progress (100 days) before she was released to us, but as strange as it may seem, a truely rewarding time in our lives. What a miracle. Chandler will turn 3 in February and is a delight. She is the class clown and she shows great leadership qualities already. I do have some questions for other parents of preemies. Chandler has been in therapy since she was 6 months old.(PT, OT, Speech) She has not caught up to her age group in walking or talking. In fact, she is not walking on her own as yet. She has no difficulty in standing and walking along furniture, walls, or with the aid of push toys. We have been told she does not have Cerebral Palsy. Did anyone else experience their child's lack of willingness to walk?

HaneyWoman@aol.com

Hi Tommy:

My cousin had a 25 weeker yesterday and I have to admit that no one in the family knows the first thing about what's happening. He is 2 lbs 3 oz and 13 inches long.

I myself am the mother of three daughters and am 21 weeks pregnant with our son, so I am very interested in getting as much information as possible. Your sight has been wonderful and I plan on visiting as often as I can to find out more.

I am also hoping that I might be able to ask questions as things come up. So far Anthony has made it successfully through the first 24 hours, so we are all just waiting to see how it goes.

I plan on printing some of this site and passing it on to my cousin. Thanks again for your site. I hope to hear from you.

Bonnie

Hi Tommy:

In July last year, we had our son coming around to us a little sooner than we expected, just over 10 weeks earlier. And just after that, I went out on the Web one day, it was actually the first time I really tried to search for some information on the web about something. I found your pages, and printed them out too take back to the hospital to show my fiancé. It was nice to read the pages, and get a view from other people than the staff at the hospital and other parents that was on that ward.

And I have a question I hope that you can help me with.

During last weekend we read through the diary of Max Isaac.

Which I hope you know about, and today I also tried to find his e-mail address on his pages but was not able to do that. He wrote about a computer program that he had for him for very small kids, that would make sounds and colors appear on the screen when they hit the keyboard. I would like to get this program, and want to know the name of it and where to get it.

Regards

Thomas Isacson

Hi Tommy:

My daughter, Missy, was 3 1/2 months early and weighed 1 lb.12 oz. Fortunately, we missed the NICU experience. We didn't meet her until she was 4 months old and ready to leave the hospital. After a rough first year Missy began to do well and celebrates her third birthday next month. We have been blessed with three sons and with her adoption final last Nov., a beautiful little girl. She is slightly delayed and has total vision loss from ROP but is a joy to be around. Hope to have a homepage up soon. Thanks for the space and good luck.

Ronald

Hi Tommy:

Just wanted to tell you how much i enjoyed your page. My son Jacob was born 2 months premature. He weighed 3lbs 1 oz thanks to all the steroids they gave me. He is now 13 months old (11 months by due date) and he is a hulking 20 lbs. I remember how weird it was coming home the monitor the oxygen it is now like one big blur. I really wish I would have known about this then.

Thank you.

Hi Tommy:

Great web page. My daughter was born at 23 1/2 weeks weighing 1 lb., 5 ozs. She is now a happy, healthy 9 year old in grade three. She loves horses and horseback riding. Not as into computers as her old man, but makes up for it with reading.

She's probably read more books in her 9 years than I have in my life. While I will never forget the scary first months of her life, watching her grow and develop these nine years has been an amazing experience. All the best!

Terry Hynes

Hi Tommy:

I have a friend who had her son, Colton, three months early. He was born weighing 1 pound and thirteen ounces. He is now up to almost four pounds and has been alive for 12 weeks. He is the smallest baby in 10 years to survive in the hospital in which he is at.

Hi Tommy:

My son Mitchell is also a Beaumont NICU Graduate. He was born 17 weeks early, weighed 442 grams (15 3/4 ounces) and measured 11" long. We spent 5 months in the NICU in 1992. Mitchell came home 2 weeks before Christmas. Reading your story was like re-reading ours. Glad to hear that your child is well. There are some good folks doing great things at Beaumont. Mitchell has been a "Miracle Baby" for the Children's Miracle Network Telethon for Beaumont.

Hi Tommy:

I am 30 weeks pregnant with my first baby and even though advised to not read your story I decided to do so anyway. I do not regret reading it! How brave you must be, this is my first thought. Secondly, what a little fighter you really are, little Tommy. I can't imagine what it would be like to have given birth 5 weeks ago, it's sounds so unreal because I just started "feeling" pregnant around that time.

I hope everything goes well for you and your family in the future. Again, I must tell you I admire you for your strength and "braveness".

Asdis Omarsdottir and lil' snugly one (due march 17th, 1996)

Hi Tommy:

I am 23 years old. I was a 25-week preemie. I am beginning to research babies and family life, since I am going to be getting married soon. I came across your page while surfing the Web.

I wanted to let you know that I enjoyed reading your story.

I have ROP and am visually impaired. I am planning to teach visually impaired children, and I have lots of info on my homepage related to visually impaired kids. I am hoping to find some more links now to add to my page for parents of visually impaired kids.

I hope you will stop by sometime and visit me. I'm looking forward to seeing the rest of your page.

I don't mind if you include my comments in your living room area or even if you put my E-mail address there. Maybe I can help some other people if they know how to find me.

Sarah

z_blakesj@titan.sfasu.edu

URL's of Interest:

homepage

Hi Tommy:

I really appreciate your site. My daughter was not premature in any way, but she has been such a handfull, I am very impressed that you have put this together.

Sofia's site is: http://www.webcom.com/paf/sofiaweb/sofia.html if you ever have a chance to visit.

Marybeth

I found your homepage and was very interested in reading all of Tommy's entries. I also found the message center and read through all of those messages.

After 27 wonderful weeks of pregnancy, the 28th was full of pain. At the end of the week I was diagnosed with pre-eclampsia. We were told that if they didn't deliver the baby soon, we could both die. After 10 hours of trying to induce labor, a c-section, with a general was done. Kelly Grace Swartzell was born on 8/14/93, 12 weeks premature. She was good size weighing 2 pounds 15 ounces and 16 inches long.

Due to my illness, I was restricted to bed for two days and my husband had to stand vigil over her. I understand your feelings about those first pictures. The pictures that Greg brought to me were horrible. We were not prepared for any of this. I felt so guilty because I wasn't overcome with love for this child as I had been with my nephews at their births. I was instead full of fear and terror. This child was so slender, RED (she didn't look like she belonged to two such fair parents), and her features weren't fully developed. I remember asking the nurse if her ears would always look like this - kind of curled up. The nurse told me in time, they would look normal.

Kelly spent four weeks and three days on a respirator. Those days were full of infections, PDA, brain bleed, blood pressure problems, etc. It was so hard not holding her. We were allowed to touch her finger or toes but if we did we weren't supposed to talk at the same time. I felt like a bystander, not her mother. One night I went in to visit and she was hysterical. Her skin was purple from her anger and her stats were showing that she was upset. They had pulled her main line and had just hit a vein for blood. I felt so empty. All I wanted to do was pick her up and make it better but instead I was only allowed to put my hands around her body and talk softly to her.

We weren't as fortunate as some parents I have read about, this NICU seemed bothered by the parents presence. Some nurses went out of their way to show us how to wash her eyes or mouth but for the most part, most of us parents felt that the staff would prefer that we just come back when the baby was ready to be discharged. Several of us parents tried to get more involved, we asked if we could breastfeed, touch skin to skin, etc., but we were turned down. The neonatologist was very conservative and her staff wasn't either up on the latest techniques and/or not interested in them.

As I look back now, I see so many things that I wished I had paid more attention to at the time. I caught one nurse in the process of giving Kelly someone else's breastmilk, nurses not washing their hands between kids, fix it people, x-ray techs, etc., in the NICU without washing or gowning, one nurse brought her teenage daughter in one day (without washing or gowning) to show her the babies (this one I reported to the hospital), etc. But at the time I was so focused on Kelly that I must have pushed these things back.

The first time that I held her I was so full of fear, she weighed less than 2 1/2 pounds, her blankets weighed more than she did. I couldn't enjoy the moment because I was terrified that the monitor would go off. She was on CPAP for several days and then moved to an incubator. She was QUICKLY moved out of the incubator because she was getting too hot, even though they say she was too small to actually make heat. I do remember a nurse showing me that her heart rate and blood pressure would go up when I arrived. She said that Kelly was excited to see me. That made me feel so warm inside.

The next few weeks were filled with mostly good thoughts. Her first bath, learning to feed her (or her learning to suck), etc. These weeks were almost o.k. because even though we didn't have her home, we were able to hold and feed her as much as we could.

She came home 4 weeks before her due date weighing almost 5 pounds. She did use an apnea monitor for approximately 4 months but never had one episode that was more serious than the pulling the cords out. She did have a great deal of nipple confusion after using a nipple in the hospital for 4 weeks.

Upon arriving home I did try to breastfeed her but I had little milk (the doctor said due to being born so early, the pre-eclampsia, the number of medications I was on) and she had no interest in it. After a week I finally decided that we had both been through enough and used a bottle. I worried though because I still didn't feel as if I had bonded with her. My loving husband suggested that my heart was still so full of fear and secure enough to allow myself to bond. He felt sure that it would happen soon and he was right. After having her home a couple of weeks, I felt as if we were completely bonded.

On her due date she had to have ROP surgery in both eyes and has just started wearing glasses. This, aside from her size, is the only reminder of her prematurity. Although the emotional shock of someone so young wearing glasses was almost overwhelming, this appears to be her only developmental problem.

She is now 2 1/2 years old and although a bit small for her age, 24 pounds and 34 inches tall, she is just fine. She is incredibly physical (no fat on this girl but lots of muscles) and determined. Although we were told at the time she could have CP or learning difficulties, none have appeared. Her doctor said that he was pretty sure she would have not learning problems based on the fact she knew her alphabet prior to her second birthday and she has an incredible vocabulary. She is a true miracle.

She has had few illnesses. I can still see the white i.v. scars on her arms and legs, a reminder of the horrible ordeal she went through. The nurses told me that if she survived she would be a fighter and that she is. She recently started preschool two mornings a week and although she is the smallest in her class, her teacher told me that she won't let anyone out do her.

As we start trying for baby number two, I am a bit fearful about going through this again. I have a 25% chance of having pre-eclampsia again and would appreciate any information on pre-eclampsia.

I met another preemie mother while in the hospital and we are working on a book for parents of premature babies. We feel that there isn't enough information out there for parents. If anyone has any suggestions, ideas, stories that would be helpful to others, info on support groups, etc., please feel free to email us at gswartz@mindspring.com.

Thank you for your story, as will all of them, it reminds us of the miracle of life. Although the first two months of Kelly's lives were terrifying and expensive (our hospital bills totaled almost $250,000), she is the light of our lives and extremely viable (regardless of what those t.v. reports say).

It is nice to talk with people who understand the nightmare that we all went through.

Judy Swartzell

gswartz@mindspring.com

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