I really feel strange posting here! I am not a premie nor am a parent to one. But you may be able to help me.
Years ago, I saw a tv program on premies. The babes were hugging their Teddy. It was explained that Japanese researchers had implanted a tape recording of a young woman's heartbeat to regularize and strengthen the babe's heartbeat.
I have a disability that has a profound loss of muscle coordination. I suspect that such a recording 'teaches' cadence and would assist at any age. One of the things I need to know is who to contact re. such a heartbeat recording.
Thanks very much for any assist. John
John McDonell <mcdonell@ntl.sympatico.ca>
Timmins, Canada - Monday, July 15, 2002 at 07:37:24 (EST)MY SON ZEKE WAS A 28 WEEKER.I STARTED BLEEDING AT 13 WEEKS,3BLOOD TRANSFUSIONS AND 8 WEEKS OF COMPLETE(I COULD NOT EVEN GET UP PEE!!!!!)BED REST.I GAVE BIRTH TO ZEKE ON 08/09/1999 BY EMERGANCY C-SECTION.ZEKE WEIGHED IN AT 3LB AND 10 OZ(PRETTY GOOD FOR A 28 WEEKER)HIS LUNGS WERE NOT DEVELOPED,HE WAS PUT ON AN VENT AND WE WERE TOLD THAT IT WAS NOT LOOKING GOOD.HE STAYED IN THE NICU FOR 73 DAYS.THOSE 73 DAYS I FELT LIKE I WAS ON THE WORST ROLLER COASTER RIDE THAT WOULD NOT STOP TO LET ME OFF.ZEKE WAS IN THE HOSPITAL 3 HOURS FROM HOME , THE 8 WEEKS PRIOR TO HIS BIRTH I WAS ALSO IN THE HOSPITAL 3 HOURS FROM HOME,AND I HAD A 5 YEAR OLD DAUGHTER AT HOME WITH MY PARENTS WHO WAS IN THE HOSPITAL DUE TO HER ASTHMA.TWO CHILDREN ,3 HOURS APART, BOTH IN DIFFERENT HOSPITAL(I WAS ALSO A SINGLE PARENT)!!!!! ZEKE HAD HIS UPS AND DOWNS,WE WOULD TAKE 3 STEPS FORWARD,THEN 4 STEPS BACK.THREE DAYS BEFORE WE WERE TO COME HOME THEY DID A SCAN AND DISCOVERED HE HAD PVL.ZEKE CAME HOME ON O2 AND STARTED PT AND OT RIGHT OFF THE BAT.WHEN ZEKE WAS 14 MONTHS THEY DIAGNOSED HIM WITH CP.ZEKE IS NOW A VERY ACTIVE (ALMOST)3 YEAR OLD WHO WALKS WITH A WALKER(BUT WOULD STILL RATHER CRAWL) AND IS IN TO EVERYTHING.HE IS BEHIND OTHERS HIS AGE ,BUT THIS DOES NOT BOTHER ZEKE ONE BIT,HE IS VERY STRONG WILLED AND HARD HEADED LIKE HIS MOTHER(HAHA).I LOVE THAT LITTLE BOY MORE THAN WORDS COULD EVER EXPRESS.HE HAS TAUGHT ME SO MUCH ABOUT MYSELF, THINGS THAT I NEVER WOULD HAVE KNOWN HAD IT NOT BEEN FOR MY SPECIAL LITTLE MAN.I WOULD NOT HAVE IT ANY OTHER WAY.THINGS WITH ZEKE WERE HARD BUT THERE IS A LIGHT AT THE END OF THE TUNNEL.(I HOPE!!!!)LEIGH AMBER COFFER... coffer@semo.net
Leigh Amber Coffer <coffer@semo.net>
East Prairie, USA - Monday, June 17, 2002 at 14:34:28 (EST)
UPDATE THOMAS HEIL DOB 24 MARCH 2002
WELL ITS NOW 1O JUNE 2002 AND THOMAS IS DOING WELL
HE NOW WEIGHS 4LB 4OZ HE IS STILL ON C,PAP FLOW
DRIVER AND HIS OXYGEN REQUIREMENTS HAVE COME DOWN
TO 35-50% AND WE ARE ABLE TO GET HIM OUT FOR (CUDDLES)
EVERY DAY. REMEMBER THAT THE STAFF WHO CARE FOR BABYS
LIKE THOMAS ARE ONLY HUMAN AND THAT THEY GIVE THERE ALL.
THE STAFF WHERE THOMAS IS HAVE GIVEN US GOOD & BAD NEWS
AND THE HELP & SUPPORT THEY GIVE IS OVERWELMING.
GOOD LUCK & GOD BLESS ALL OF YOU AND YOUR LITTLE BABYS
andrew heil <liquid1967@hotmail.com>
manchester, England - Monday, June 10, 2002 at 19:57:58 (EST)Hi Everyone.
last hope for a bit of happiness
My first and only Grandson Matthew is fighting for his life with Chronic lung disease
My daughter gave birth to matthew at 26 weeeks and after her waters broke at 11 weeks!! she has had undergone "amio infusions" three times a week before matthew was born
she has been told today that matthew has little chance of coming off the ventilator and his heart will fail in time
this is email is a request to mothers,grandparents etc who have experienced similar......what treatment was your baby given...... drugs..steroids...anything at all any information would be gratly appreiciated
thank You all.
John
john morton <jmmorton@lineone.net>
liverpool, England - Thursday, May 30, 2002 at 01:06:20 (EST)I was born in Glasgow on 11 July 1949.I was at birth 2lb 1/2 oz. I believe I was 12 weeks premature. I haven't got any photographs to look back on, as all my photos where taken by a proffessor looking after me. I was very short-sighted due to being premature. This was corrected in 2001. They had to send to another hospital to get an incubator. So after 25 years I am still here, although one of the Doctors looking after me told my father that I had died.!!
Colin Rush <cos100@btinternet.com>
Swansea , Great Britain - Thursday, May 23, 2002 at 03:22:35 (EST)ON THE 24 MARCH 2002 AT 0039 MY WIFE GAVE BIRTH TO A BABY BOY,HE WAS 14 WEEKS PREMATURE AND WEIGHED 1LB 6OZ,IT IS NOW THE 12 MAY AND HIS LATEST WEIGHT IS 2LB 10OZ.HIS NAME IS THOMAS JAMES HEIL (TJ) ANY COMMENTS FROM ANY ONE WHO KNOWS WHAT WE ARE GOING THROUGH WOULD BE GREATFULY APPRECIATED.
ANDREW AND JOENNE.
ANDREW HEIL <LIQUID1967@HOTMAIL.COM>
MANCHESTER, ENGLAND - Monday, May 13, 2002 at 19:58:03 (EST)Hi. I gave birth to my precious son Matthew at 32 weeks on April 23rd, 2002. I had lost a baby at 9 weeks in July 2001 and then in September one week after 9/11 conceived Matthew. The pregnancy was going ok until October 22nd when at work I started bleeding heavily. I was taken by ambulance to the emergency room where the doctor told me that I would probably lose this baby also even though in the ultrasound department we had a strong heartbeat. It turned out that I had a bleed but Thank God! it did not affect my pregnancy. Then I had to deal with high blood pressure and trying to get my medication straightened out. In March I had an ultrasound done and we found out we were having a boy. We also found out when they did a cross section of his imbilical cord that Matthew had a single imbilical artery (instead of two arteries and one vein he only had one artery and vein). My doctor said there could be a chance of birth defects but we wouldn't know until he was born. Then I developed HELLP - preeclampsia. After a short stay in the hospital they sent me home only for me to turn around the next day and come back and at that point they decided I needed to be induced. Thankfully Matthew had very high apgar scores (7 & 8) and is doing well. I however am not dealing with this very well. I cry so hard a lot when I have to leave him at the hospital (which is 27 miles from my home one way). I know he is being taken good care of but I JUST WANT HIM HOME. Thank God he has no major health issues and no birth defects. He has had some bradychardia spells and has gotten lazy about nippling which the nurses tell me is normal. I worry that my milk will dry up so I am taking Fenugreek. I guess it is too soon to tell if it is going to help. He has to have a tiny amount of oxygen as we are in the mile high city. I just miss him so much. I also have a 14 year old son and feel like I am neglecting him. He is wonderful though and does not resent the time I need to go to the hospital and spend with Matthew. I am having to learn to take a day off here and there to get some much deserved sleep. How do you all do it????????? If anyone has any advice on how to make this more tolerable I would greatly appreciate it!!!! I would love to correspond with anyone when you have the time. I need to talk to people who understand what I am going through and would love to be a support person for others.
Thank you and God bless all of you!!!!!!!!!!! Julie
Julie Roth <hawaii777@hotmail.com>
Aurora, USA - Wednesday, May 08, 2002 at 12:31:15 (EST)I had my baby boy on May 1st, 2002. I was 33 weeks. He was 4lb 6.1oz and is doing very well, we hope to have him home by mothers day but I can't seem to understand why he cant come home now, he has had no medical problems or feeding problems at all only a slight case of jaundice. They don't seem to be doing anything for him that I couldn't do at home. All the doctors give me different e.t.a's on when he can come home. I miss him so much, my arms ache to hold him and I am always so tired, I spend all my time at his cribside at the hospital. This has to be one of the worst things a parent can go through...my prayers go out to all you other parents of preemies.
Chauntel <cc97365@yahoo.com>
Stafford, USA - Wednesday, May 08, 2002 at 07:12:27 (EST)Hello to all preemie parents. My name is Mary Rose and am a former graduate of the NICU. I was born almost 32 years ago at about seven months and weighed 2lbs 14 ounces. I was in the hospital for about 2 months, and now am fine. I had my first son, Lyndon, was born at 38 1/2 weeks. He was a traumatic delivery. I also had bleeding in the first trimester three times, and was hospitalized twice. I figured if I was to be blessed with a child, God would let it happen. Everything was all right until 35 weeks, from which point I remained 3 cm dilated until I delivered. He was 9lbs 3 ounces. I blame the doctor who delivered him for the problems in my nest pregnancies.
On September 5th, 1997, I delivered a 3lb 1 ounce boy, Jared, at 28 weeks gestation. He was taken from us when he was only 4 hours old to another hospital in another city to the NICU. I can still feel how I felt as he was wheeled away. It is fresh in my memory as it was yesterday. We were totally unprepared for the experience of the NICU. All the alarms, sick babies, specialists. I was kind of fortunate as at the time I was in my second year of nursing, so I knew the medical jargon. That made things a lot easier. It was found that I had had a severe kidney infection and a blood clot on my placenta that caused me to go into labor. Jared spent 6 1/2 weeks in the hospital. He was discharged at a weight of 4 lbs 14 1/12 ounces. big difference from 9 pounds. The first year was uneventful. The following spring and pretty much until now he is proe to lung infections and mysterious flus. He has had pneumonia twice and bronchiolitis so many times. We literally are on pins and needles anytime anyone mentions the word "cold". We never know what to expect. He is now 4 years old, weighs 39 lbs, and attends an Early Education Program as he has had delays with regards to his speech and language.
On June 1, 2000, we our third son, Darien, at 36 weeks. He weighed 6 lb 15 ounces. He tried to make his entrance at 31 weeks, but the doctor managed to hold us off for another five weeks. He so far is my healthiest baby. At 22 months he is 30 pounds and is very healthy. He only spent five days in hospital due to jaundice. He has been sick probably 2 to 3 times in 22 months.
On January 3, 2002, we delivered our fourth boy at 28 weeks gestation. A very difficult pregnancy throughout. I knew he was going to come early. Unlike our other 28 weeker, he received surfactant at birth. Like his older brother was ventilated four days and on and off CPAP. Bret was ventilated at about 2 weeks for sepsis (infection). After that he progressed along. By the time he was about 2 months old he was medically stable, but had to learn how to feed. For about a month and a half it was a real struggle to get him to breastfeed. We now are doing great with it. He has just recently had a double hernia repair. That went remarkably well. The little dude is now 9 lbs 6 1/2 ounces at about 15 weeks. He is doingstuff a normal three month old is supposed to do. From here on out we take each day in stride. It was not discovered until I had Bret that the reason for both 28 weekers was abruptio placenta. This is where the placenta seperates from the uterine wall. So with all this we have decided to end our family there. Besides after two high strung preemies, not sure about the third yet, our hands are full.
To all those preemie parents out there, they may have come early, but I feel that everything has a purpose. Preemie babies are a handful, but they are a blessing from God. It is a struggle everyday, especially when they are in the NICU, but take it one day at a time, one step at a time. Give yourself and the staff who work with your child a pat on the back. It takes a special person to work with a preemie infant.
Mary Rose Ghostkeeper <mghostkeeper@yahoo.com>
Edmonton, Alberta, Canada - Sunday, April 28, 2002 at 14:49:32 (EST)Hello to all preemie parents. My name is Mary Rose and am a former graduate of the NICU. I was born almost 32 years ago at about seven months and weighed 2lbs 14 ounces. I was in the hospital for about 2 months, and now am fine. I had my first son, Lyndon, was born at 38 1/2 weeks. He was a traumatic delivery. I also had bleeding in the first trimester three times, and was hospitalized twice. I figured if I was to be blessed with a child, God would let it happen. Everything was all right until 35 weeks, from which point I remained 3 cm dilated until I delivered. He was 9lbs 3 ounces. I blame the doctor who delivered him for the problems in my nest pregnancies.
On September 5th, 1997, I delivered a 3lb 1 ounce boy, Jared, at 28 weeks gestation. He was taken from us when he was only 4 hours old to another hospital in another city to the NICU. I can still feel how I felt as he was wheeled away. It is fresh in my memory as it was yesterday. We were totally unprepared for the experience of the NICU. All the alarms, sick babies, specialists. I was kind of fortunate as at the time I was in my second year of nursing, so I knew the medical jargon. That made things a lot easier. It was found that I had had a severe kidney infection and a blood clot on my placenta that caused me to go into labor. Jared spent 6 1/2 weeks in the hospital. He was discharged at a weight of 4 lbs 14 1/12 ounces. big difference from 9 pounds. The first year was uneventful. The following spring and pretty much until now he is proe to lung infections and mysterious flus. He has had pneumonia twice and bronchiolitis so many times. We literally are on pins and needles anytime anyone mentions the word "cold". We never know what to expect. He is now 4 years old, weighs 39 lbs, and attends an Early Education Program as he has had delays with regards to his speech and language.
On June 1, 2000, we our third son, Darien at 36 weeks. He weighed 6 lb 15 ounces. He tried to make his entrance at 31 weeks, but the doctor managed to hold us off for another five weeks. He so far is my healthiest baby. At 22 months he is 30 pounds and is very healthy. He only spent five days in hospital due to jaundice. He has been sick probably 2 to 3 times in 22 months.
On January 3, 2002, we delivered our fourth boy at 28 weeks gestation. A very difficult pregnancy throughout. I knew he was going to come early. Unlike our other 28 weeker, he received surfactant at birth. Like his older brother was ventilated four days and on and off CPAP. Bret was ventilated at about 2 weeks for sepsis (infection). After that he progressed along. By the time he was about 2 months old he was medically stable, but had to learn how to feed. For about a month and a half it was a real struggle to get him to breastfeed. We now are doing great with it. He has just recently had a double hernia repair. That went remarkably well. The little dude is now 9 lbs 6 1/2 ounces at about 15 weeks. He is doingstuff a normal three month old is supposed to do. From here on out we take each day in stride. It was not discovered until I had Bret that the reason for both 28 weekers was abruptio placenta. This is where the placenta seperates from the uterine wall. So with all this we have decided to end our family there. Besides after two high strung preemies, not sure about the third yet, our hands are full.
To all those preemie parents out there, they may have come early, but I feel that everything has a purpose. Preemie babies are a handful, but they are a blessing from God. It is a struggle everyday, especially when they are in the NICU, but take it one day at a time, one step at a time. Give yourself and the staff who work with your child a pat on the back. It takes a special person to work with a preemie infant.
Mary Rose Ghostkeeper <mghostkeeper@yahoo.com>
Edmonton, Alberta, Canada - Sunday, April 28, 2002 at 14:48:20 (EST)My husband, Paul and I had a premature baby boy on July 8, 1986. I was at 28 weeks and had been diagnosed with Lupus in my 3rd month. Bradley, our son, weighed 570 g, or 1 pound 4 oz. He stayed in the hospital for 4 months, coming home on Nov. 1, '86 weighing just over 5 lbs. and on low-flow oxygen. He is now 15 years old, and though still petite, he hates that word! is almost as tall as his Mum. He is doing a project for Grade 10 English on preemies, so we discovered this web- site. He is remarkably healthy, has a minimum learning difficulty with emerging A.D.D.( my diagnosis not doctor's), He has worn glasses but uses them less often now. He is a born-again Christian as are his parents, thanks greatly to our preemie experience. thank-you to whoever started this site! Sandy J.
Sandy Jackson <passpsb@perth.net>
Gads Hill, Canada - Saturday, April 20, 2002 at 00:58:57 (EST)To all parents with premature babies I just want you all never to give up hope and keep your heads up high. I have been through it all. I carried my first pregnancy 20 weeks and delivered two beautiful identical twin girls which did not make it. My next pregnancy I carried my daughter 29.6 weeks. She is now 9years old and is doing wonderful, my next pregnancy I carried my son 37 weeks which is full term, and now I am 29 weeks pregnant and I pray everyday that I make it a just a week further. I have either a bicornuate or septate uterus so I am at high risk for premature labor. Anyway, I just wanted to tell other parents to have faith, I know it may seem hard and it can get depressing and scary. Just remember our little ones are fighters by nature. Keep your heads up and be strong for your babies. Things will be okay...
Nat <firmejina@hotmail.com>
Wilmington, USA - Thursday, March 28, 2002 at 07:02:17 (EST)My son was born March 29,01 15 weeks premature. His birth weight was 474 grams = a little over 1 lb. He spent 100 days in the hospital, with 2 months on the vent. He had ROP -stage 4 and laser surgery on his eyes. He had hernia (both sides) and surgery in September. He came home on (50%)oxygen and oxi monitor. Took us only month and a half to bring him to room air. He is a fighter. He still does not sit by himself but he is progressing. He is a very poor eater, he is only 15 lbs now.
I developed severe preeclampsia and HELLP syndrome and now I known was because of APS syndrome.
I am very thankful that I had my husband by my side.
This whole experience made us just stronger, and we so happy to have our baby with us.
For all of you, new parents of preemies there is light at the end of tunnel, you have to believe it.
Lidia <borki3917@hotmail.com>
- Wednesday, March 20, 2002 at 12:31:56 (EST)MY DAUGHTER WAS BORN AT 27 WEEKS. SHE WEIGHED 1LB. 14 OZ..
SHE HAD NO SETBACKS IN THE HOSPITAL AND ACTUALLY CAME HOME 1 MONTH AHEAD OF TIME. THAT WAS 8 YEARS AGO. SHE HAS A MILD FORM OF CEREBAL PALSEY. IT HAS BEEN RECOMMENDED THAT SHE HAVE SURGERY TO HELP WITH HER LIMP. IF THERE ARE ANY PARENTS WHO HAVE GONE THROUGH THIS SURGERY I WOULD REALLY LIKE TO HEAR FROM YOU.
VANESSA SANTIAGO <VJ3SANTIAGO@MSN.COM>
CLEVELAND, USA - Wednesday, March 06, 2002 at 06:10:11 (EST)To all you mother's that have had preemies, not all the time is it a bad thing... I was a preemie, I was born in 1949, I weighed 2lbs 2oz.,Lost 1 lb. Was on oxygen for quit awhile, this was before they really knew how much oxygen to give babies. At that time alot of babies came out retarded or blind or worse because of the oxygen. They have learned so much since I was born, if I could survive, I am sure you all will have no major problems. I'm just an average person. No major mental problems or illnesses. My mother had 7 children, I was the third oldest & she always says I was the best one of all, I think my being born 2 months early made me SPECIAL to her, for that I am thankful, so you all hang in there!
Paula Proveaux <Paulseyan@aol.com>
San Jose, USA - Sunday, March 03, 2002 at 15:40:04 (EST)Our little girl was born 16 weeks early,today she is 10mths old.she crawling,she does everthing she is expected to do for 6mths correted.i would not trade what we have been through after seeing her now.
Donna <donwa40@hotmail.com.au>
frederickton, aus - Tuesday, February 26, 2002 at 12:50:58 (EST)My name is Terri, I had a daughter that was born two months premature. She was 2 pounds 14 ounces. Her name is Samantha. She dropped to 1 pound 6 ounces and spent 11 weeks in the hospital. Although this was 15 years ago, they have come alot farther with medical technologies since than. I just want all you parents of premature babies to know that YOU all have a little miracle and you will get through whatever may come about. They told me that she had a hole in her heart and that she would grow out of it...Well she did. They told me that she would be slow....Well, she currently holds a 4.0 GPA and strives in everything she does. She is a happy, healthy 15 year old that loves life. I have had four children total and she was my only preemie. I carried the rest of my children full term, one before her and two after her. I hope that you all know that whatever happens in your journey through life with your preemie child, it is worth every second. You can beat the odds and succeed. We have done it and so can you.
Terri <mystic_rose25@hotmail.com>
Amory, United States - Monday, January 28, 2002 at 10:39:31 (EST)hi my names kim i have just had a little girl weighing
1 pound 4oz i am interested in chatting to mums who have had
there babys early my little girl is called shannon and
at the moment she is doing fine she is 1wk old
kimberley carson <ourangie20@hotmail.com>
bolton, england - Monday, December 10, 2001 at 02:03:50 (EST)hi, our daughter Feilicia was born on 4-11-97 weighing in at 1lb 2oz. She was 21/2 months early but she was not getting any food from my because my placenta was gone. We spent 2 1/2 months in th nicu at Rochester St Mary's Hospital. We have had our ups and downs. We were told to prepare ourselves because the doctors really don't know how things are going to turn out with these premature babies. I went every day to the hospital and my husband went every night. We would just talk and sing to her and when we could hold her we held her as much as we could. We prayed alot and god listen. I remember the first time she cried I had to call everyone because i was so excited she was crying. Our daughter is now 4 and she is very active and keeps us going. She will have to have an operation on her chest but thank the lord she is healthy little girl. She is a very picky eater. If anyone else has a premie that is very picky and does not eat much let me know if you have a ny suggestion on how to get them to eat more. For all those mom and dads having a premie is very special it makes your family stronger and closer. You thank the good lord alot and cherish everyday you have with them. We just had another baby girl and she was a healthy one. We were scared that it might happened again but we took that chance and with gods help we knew we could do it. If anyone would like to email back to me to let me know how there premie kids are doing that would be great. I have found it hard to find people to talk to and ask questions and see what stage their child is at. Thank you for letting me talk.
robyn krampitz <robynkrampitz@hotmail.com>
Blooming Prairie, usa - Sunday, September 30, 2001 at 05:25:19 (EST)Threwout my pregnacy i had felt like there was something very wrong. I kept going into the doctors, and they did numerous tests and ultrasounds but they could not find anything wrong. They kept telling me that there was nothing wrong and that it was my first baby, and basicly all my feelings were in my head. Around 26 weeks along, i felt like the baby was too far down, and had some cramping and the doctors assured me that that was normal, that they baby was growing and stretching out my tummy. I hit 27 weeks on June 8th, 2001 and suddenly the cramping got way worse. I told my husband that i wasnt feeling well and needed to go to the hospital to get checked out. He rubbed my back and told me everything was okay when BOOM a gush of water flew out. I remember panicing and him asking me if i was sure i hadnt had a potty accident. Went to the toilet and more water came out and i remember sticking towels down so that when i went to the hospital i wouldnt leak out my jeans. Got to the hospital and they comfirmed that indeed my water had broken and they were going to give me some medication to stop the contractions. The contractions stopped but the babies heart beat kept dropping so they rushed me in to have an emergancy c-section. I remeber them telling me they werent sure the baby was going to make it and to prepare ourselves. At that point i started crying and asked them if they could just knock me out. I didnt know how i was going to face a dead baby, and i didnt want to be a part of any of it. They told me that they couldnt put me out because it could bring harm to the baby. I then asked if my husband could stay for the surgury because there was no way in heck i could do this alone. They finanly agreed my husband could stay and the next thing i remember is them telling us we had a baby boy. (we never did the sex ultrasound cheat.) (1am to the dot) They then explained that the reason our son was premature is that i have a heart shaped uterous which is undectable by ultrasound. I was thrilled that my son alteast had all his parts. They took me to my room and i felt so empty and guilty for my body being messed up. They told me that my child was going to be rushed to a different hospital while i stayed there. They brought in my son so i could see him threw the glass, but i was so drugged i could barely see him. They wanted me to stay at the hospital for atleast 2 days but after 24 hours i released myself anyways.
At the nicu they have told us several times that they didnt believe our son was going to have a chance to survive. We never missed a single day from visiting him, and i pump my breastmilk every 3 hours. He has had heart surgury, had rollercoasters, but even when the doctors told us to prepare ourselfves we kept our faith. He is still in the nicu and is now 2 months old and is off the ventilator. He has been off oxygen completly twice, and now is on around 32% oxygen on the nasel prongs. He has a hernia which will require surgury before he can leave.
All i can tell you is no matter how hard it gets, how much others around you loose faith, dont give up. Dont listen to anybodies advice on how to deal with what you are going threw unless they have gone threw it themselves. Always stand up and take care of yourselves first. We had family and friends begging to come see him every day, and until he was a month and a half old i gave in to them. And that drained the heck out of us. So allow yourselves to say no. Its your baby and nobody knows what you are going threw but you. And if u dont want to share the precious time u have with your child you dont have to. That doesnt make you a selfish person. So dont let people guilt you into what is best for them, when it isnt what is best for you and your child.
Take care and keep the faith
Heidi Pedersen <heidilovesyou@yahoo.com>
Redmond Wa, USA - Thursday, August 09, 2001 at 11:33:11 (EST)hello my name is teressa i have just had a preemie baby and im scared ....i was told that he also has brain damage..and i blame myself for that....i will spend the rest of my life making that up to him..but how can i make something like that up tp my baby boy????..you have a great site ..i just wanted to tell you that
teressa machleit <sweetkissess70@hotmail.com>
norfolk va, usa - Monday, July 23, 2001 at 13:34:08 (EST)Hi all, my name is Lisa Mann, my son was born at 27 1/2 weeks weighing 1 pound 8 oz. He was in NICU for 4 1/2 months and the roller coaster ride was scarey and thrilling all at the same time. Once we got over seeing the machines and wires we saw our son and thats all we saw for hte most part. Until they added others then it was hard again. He rolled over for the first time in NICU and that was very hard.I always thought our kids would do things at home for he first time not in the hospital. But since then we have had many other firsts at home and in the hospitals. I will be so glad when we are not going back so often. We have been in the hospital for somthing or another every holiday seasson except one for he past almost six years. Thanks for having a site for preemie moms to meet and see they are not alone. any one wanting to talk via email write away and we'll email back. lisa
lisa mann <bld2mann@yahoo.com>
anniston, usa - Wednesday, May 30, 2001 at 05:33:19 (EST)Simone was born 25 weeks, 750gms. I had hypertension (pre-eclampsia)She is now 3 years old and is a beautiful blonde blue eyed active girl. We've been through a great deal, her more than any of us & she's turned out healthy and intelligent. If having a premmie first time round, don't let one premmie stop you from having another baby. Next time round I managed 36 weeks!
Louise <bkluge@lm.net.au>
Adelaide, Australia - Saturday, May 19, 2001 at 20:27:11 (EST)I just had a premmie baby. My son was born 7 weeks early. He has now been in the NICU for 2 weeks. I try to see he the most I can (about 7 hours a day) and I still feel guilty when I come home to rest. I also think I have the postpartum depression. Dealing with this is not easy.
Your site is a great help.
Thanks,
Isabel Companioni
Isabel Companioni <isi151@hotmail.com>
Miami, - Sunday, May 13, 2001 at 01:24:08 (EST)Our little boy Harvey Jidae McCorkell was born at 24 weeks and 6 days into his gestation weighing in at 1lb and 10.5 ounces. He has fought many battles already in his short life, the most difficult of all being Chronic Lung Disease. Numerous septic work ups have hampered our little big mans progress, he is the bravest person we know. Harvey has 3 siblings all of which were term. My little darlings have been greatly affected by the whole premature experience, there ages are 8, 6 and 20 months. I have been seperated from them during most of there little brothers NICU experience as we live in the country. I am egar to recieve any information that may help me sort through this emotional journey with my children. I would also like to here from other parents who have battled with the rigors of chronic lung disease.
KYLIE <kajae@bigpond.com.au>
WARRNAMBOOL, AUSTRALIA - Sunday, March 18, 2001 at 22:55:40 (EST)Hello to all the other premmie mom I would like to share some of my daughters story.Well to start her name is Angel she was born at 24 weeks weighing only 1 pound 2 ounces as smalle as she was she had the strength of a giant she over came problems that no baby should have to even dream of she spent the next 4and a half months in the nicu at the hospital for sick children in toronto We are happy to say that she is now very fat and as healty as the next baby thanks to god for leaveing her with us and thanks to her for wanting to stay
kizzy vassel <shyangel124Ahotmail.com>
toronto, ontario - Tuesday, January 23, 2001 at 16:05:01 (EST)our baby is now 2 years old my wife was having twins at week 11 she was bleeding heavy. she lost our son and had a baby girl at 16 weeks early our little girl weighted in at 1 pound 4 ounces she was in neonatal for 4 months she has her problems but shes worth her weight in gold.
lawrence broom <jessica@scarlett11.freeserve.co.uk>
exeter, england - Wednesday, November 15, 2000 at 06:11:44 (EST)HI MY SON ELWAY WAS BORN AT 29WK AND WEIGHED 1.9LBS HE SPENT 4 1/2 MONTH IN THE NICU...HE IS NOW 2YRS OLD AND DOING GREAT HE HAS NO MEDICAL PROBLEM FROM BEING BORN EARLY I THANK GOD EVERY DAY FOR HIM AND DO NOT REGRET THE HARDSHIP THAT ME AND MY WIFE WENT THROUGH FOR HIM..I KNOW THAT IT WAS ONLY BY GODS GRACE THAT HE LIVED AND IS HEALTHY....WE TELL ARE FAMILY HE IS THE REAL $$MILLION DOLLER BABY$$....
TOM SMITH <ELWAYS1@WEBTV.NET>
WICHITA KS, USA - Monday, August 07, 2000 at 02:07:58 (EST)HI MY SON ELWAY WAS BORN AT 29 WEEKS AND WEIGHED 1.9LBS HW SPENT 4 1/2 MONTHS IN THE NICU HE IS NOW 2YRS OLD AND DOING GREAT IT WAS A MIRACUL TO SEE HIM GROW IN THE NICU ME AND MY WIE SPEN MENY HOURS BY HIS SIDE AND I BELVE THAT WES VERY IMPORANT THAT HE KNOW WE WERE WITH HIM IT WAS ONLY BY GODS GRACE AND THE KNOWLEDCE OF HIS DOCTOR THAT SAVED HIM I THANK GOD EVERY DAY FOR OUR MILLION DOLLER BABY...
TOM SMITH <ELWAYS1@WEBTV.NET>
WICHITA K.S, USA - Monday, August 07, 2000 at 02:01:46 (EST)my son Albert was born at 23wk on 8/27/96. he spent 41/2 months in the nicu. he extubated himself 4times while on the ventilator for 4wks. he had numerous problems, which we are still dealing with. we went home with oxygen, apnea monitor and pulse ox for 1yr 8mo. also nebulizer tx until now for BPD. Thank God, Albert will be 4 next month and start Prek for special need kids. So for other mothers out there never give up and always thank god for small miracles. Our premies are special . Please write, thank you and God bless all parents of these special children.
claudette norman-owusu <cericaow@hotmail.com>
orlando, USA - Tuesday, August 01, 2000 at 03:55:51 (EST)Hi My name is Megan and this was my first child.She was born at 25weeks gest. She was born March 20,2000 and weighed 2lbs.1oz.I had her early because I had ecoli.Hannah was on a vent for 6 weeks. She had a staph infection.She now has a small hole in the heart but they say it will close on its own.She has BPD.But she is doing wonderful now and weighing 6lbs13oz. We have been so blessed she hasn't had to have any surgeries and her eye's are fine. Good luck.
Megan Shafer <toung@gateway.net>
Flint Mi, Usa - Monday, July 31, 2000 at 04:40:16 (EST)Hi My name is jan
I was 23 weeks pregnant when I had to have my appendix out.
Two weeks later my daughter was born (May 7 2000). We have been in the hospital for almost 3 months. Our daughter has had 3 infections, chest tubes, PDA surgery, paralized vocal chord, strider from all the tubes and now we are going through the eye exams and she is at stage 2.. When does the roller coaster ride end???? Our daughter was born 1 lb 3oz and is now 4 llbs 4 oz. Would love to here from others.
Jan <mj.bannerman@sympatico.ca>
Toronto, Canada - Friday, July 21, 2000 at 05:06:21 (EST)******SORRY WRONG E-MAIL ADRESS THIS IS THE RIGHT ONE*********
Shylo <shylo_r@yahoo.com>
moab, usa - Saturday, July 08, 2000 at 14:19:16 (EST)Hi my names Shylo!
My son Kayden was born at 31 weeks and weighed 3 lbs 14 oz. 1781 in grams. My water broke Christmas morning at 4 am and I went to the hospital that was when i was 26weeks pregnant. I was driven by ambulance two hours away where they ordered my to hospital bed rest! So for the next five weeks i sat there only alowed to use the bathroom. When i finally had my son he was given to me only to hold for less than a minute then he was rushed to the nicu where he remained for the next 6 weeks! He had apnea and braycardia only slightly but was placed on a vent anyway. he was only on that for a week or so then he was removed form that and only used oxygen. Without the help of the NICU son at St Marys in Grand Juction, Co My son would have died! He still breaths a little hard sometimes but he is doing so well that they don't think he will have any lasting problems. He is 5 months now and weighs 15 pounds! I just want everyone to know that my heart goes out to you and your little ones and that things do get better and god will never give you anything you can't handle! I love you all and I would like to here up dates on all your babies if you would like to write me!
Shylo <shylo@yahoo.com>
Moab, Ut, usa - Saturday, July 08, 2000 at 14:12:40 (EST)Hi
My name is Meagan and on june22,oo i had a baby boy.He was 12 weeks early and only 2lbs 2oz.He's 4 hours away from me and it's really hard for me to deal with .I'm only 15 and that causes alot of problems with transportation and other
things too.If anyone has any advice or knows how to make it a little easier please email me and let me know.
Meagan
Ringener.
Meagan Ringener <mmz85@email.com>
Tularosa, N.M - Friday, July 07, 2000 at 02:50:52 (EST)Kiera was born February 13, 2000 at 32 weeks weighing 4lbs, 1 oz. I had been hospitalized since 24 weeks w/ placenta abruption and oligohydraminos(low amniotic fluid). Due to the 6 doses of betamethazone I had while in the hospital, Kiera's lungs dev'd wonderfully and she only remained hospitalized for 16 days.
In our eyes, she is a beautiful, thriving little 4.5 month old weighing 13 lbs. However - her 'prematurity' still remains. She currently attends physical therapy to strengthen her arms and hands.
I often compare her to other children in my mother's club, however I know developmentally, she may always lag behind.
Does anyone have any good reading material on premature developing infants?
-
Diane <DMGREY@prodigy.net>
Tampa, USA - Thursday, July 06, 2000 at 09:49:26 (EST)Michael is my third child, the others were all full-term 'normal' delivery's. I bled from the 11th week of my pregnancy, and was hospitalised from week 16. I was diagnosed at 20 weeks as having a grade 4 palcenta preavia, and was told the only way out for the baby was by C-section.
Michael dropped into a bed-pan in Nov 99, a 25 weeker, weighing in at 1Ib 15oz. a 'normal delivery' that was supposed to be impossible.
Nothing on earth prepares you for the experience of having a premature baby, we have kissed Michael goodbye on so many occasions and as with his birth, he seems determined to defy everyone. He has his 'medical' problems, as well as being oxygen dependant, (which is an experience in its self)
but he is now 7 months old and smiling, laughing and babbling, and he loves his food. He weighs 12Ib 6oz.
We are fast learning that the emotional rollercoaster of having a prem-baby is far from over.
I would like to wish all others going through this all the luck in the world, and would love to hear from others who would like to compare notes, and experiences, as I know we're not the only ones going through this.
Debby Barrett <debbybarrett@supanet.com>
hertfordshire, england - Sunday, June 25, 2000 at 21:08:44 (EST)I've had THREE preemies and each one was terrifying. Jared was born 8 weeks early July/96 - 11 day hospital stay and doing absolutely wonderful. He's a very active 3 year old. Aspen was born 14 weeks early Oct/98 - 63 day hospital stay and is now 19 months old and developmentally at a 30 - 34 month level. She is an extremely bright and active girl and we have our hands full. Joshua was born 15 weeks early Nov/99 and passed away at birth due to uterine rupture. Nothing can prepare you for the absolutely terrifying, exillerating ride that having a preemie will do to you ... NOT even having previous preemies because each one is VERY different with their own set of problems and hurdles. I approached each child with a "NOTHING IS GOING TO STOP ME NOW" attitude. I let NO ONE tell me what to do and not to do to my baby. I went with my instincts and they always proved right. Because of the amount of exposure I've had to preemies, I developed a Preemie baby record book that is specially designed to record a preemies very special first months. Many of those in the NICU unit of the hospital I had my children in love it. It records everything. I did for my children, however, I give it to anyone in need. Good luck all parents of preemies...there's nothing in the world like parenting a preemie.
Deborah Shillito <dshillito@telus.net>
Victoria, B.C., Canada - Wednesday, June 07, 2000 at 14:47:18 (EST)I had our baby girl Brittany at 25 weeks. I went for a routine monthly checkup and felt fine. The doctors found protein in my urine and my blood pressure was up. I was immediately put in the hospital and three days later my daughter Brittany was born by c-section. It was the most terrifying experience that I have ever gone through. She made it fine thru the first week. She had two infestions but was doing better than expected per the doctors. I visted her daily and read and sanged to her. One morning we got call around 5:00 am saying her heart rate was going down. We quickly got dressed and within 15 minutes after getting to the hospital my precious daughter passed away. That was 3/14/00. It has been extremly hard for my husband and I. I have to sleep with her teddy bear every night and there is not a day that goes by when I do not think and miss Brittany. How can any parent ever,ever live with the loss of their child?I have alot of faith in God but this has been the worst thing I have ever had to deal with. Keep us in your prayers and best of luck to all premie parents out there.
J. Davis <jxdwildt@erols.com>
Virginia - Sunday, May 28, 2000 at 06:31:16 (EST)Alfie was born 11 weeks early and weighed 2lb 14 oz. He is now 6 months old and weighs 13 lb 4 oz. Like all other parents of premmie babies it was a tremendously difficult time. Added to this was the fact that we were in a strange country - Korea - with a very different approach to premmie babies. We had to fight to see and touch our baby. Breastfeeding was discouraged although fortunantly Alfie did get my colostrum. He has had few complications and I have been able to full wean him back onto the breast. This has been both the hardest and best hing I have ever done. Pumping is the last thing I felt like doing at the time and keeping it up for the two months he was in the NICU was draining. I would encourage anyone in the same position to try and do it.
Louise Norris <dnorris@hitel.net>
Seoul, korea - Wednesday, May 24, 2000 at 18:48:59 (EST)i had a full term baby 4yrs ago. on 3/29/00 my water broke. i was in the hospital for 2 days and then had an emergency c-sec on 3/31/00,25wks preg. she was born 1lb 10oz with pneumonia and a blood infection. she was 15wks early. it is now 7wks later and its been a roller coaster. last week she pulled the ventalator tube out and was placed on oxygen. all iv lines have been removed. the best mothers day gift was to hear her cry,sneeze and the premature cooing...she is a miracle. all premature babies are miracle's. it is a hour by hour day by day process. please email me with any sugestions or just to share pain and laughter. i believe were not in this alone.
lisa <cjgunn>
broomall, pa - Saturday, May 20, 2000 at 07:28:57 (EST)My daughter Kyra was born 10.5 weeks early, and I was alone, I did not know anyone who had been through a premie delivery, and my family was no help. They could only think the worst. If they went to the hospital with me it was, "Oh poor little Thing" and felt sorry for her and I both. I realized pity is not what anyone needs, and am glad to see this site. THANK YOU SOO MUCH.
Bobbi <beepers@fairfieldi.com>
Millersport, USA - Tuesday, April 25, 2000 at 14:39:19 (EST)My daughter Katy will be 5 months old tomorrow. She was born at 26 weeks and spent 13 weeks in the NICU. She weighed 1 pound and 10.4 ounces. She is still very small, but is gaining weight and actually sleeping through the night. I have never experienced such a rollercoaster of emotions as I did with her birth. What should have been the happiest time of my life became the most painful. We were very lucky, in that Katy only had one infection and got RSV only once. Her PDA cleared up with one treatment of the medication. Even so, I still feel guilt and anxiety about her birth and the rest of her life. Now that she's home I think I should be happy, but I find myself more depressed and anxious. I think it's because it's not really over yet; she could still develop cerebral palsy or have learning disabilities or retardation. With a preemie you really do have to live "one day at a time".
Adelle Cottrell <a.cottrell@mindspring.com>
Atlanta, USA - Wednesday, April 19, 2000 at 12:36:43 (EST)Our son, Dane, was born by emergency C section on 26 Mar 00. He was 7 weeks prem, weighed 3lb 4oz and I can remember thinking, 'this isn't happening to us, what have we done wrong'. He stayed in NICU at the Mercy Hospital for 10 days and has recently transferred closer to us (only 1/2 hour drive instead of 1 1/2 hours) to a level 2 Special Care Nursery. I cry every time I have to leave to come home. I know logically that he's in the best place for him but emotionally I just want him home with me. I wish every one else out there all the best of luck. Never give up hope and make sure you touch your baby lots so they know that they are loved.
Tanya Lauwers
Melbourne, Australia - Monday, April 10, 2000 at 22:34:48 (EST)My son, Antonio is 3 weeks and 4 days old today. He was born 10 and a half weeks early. This is one of the most scariest things I' ve ever gone through. My baby stays on monitors and so many other types of machines all day, which makes everything even more frightening because I can't stand to see him like that, and also because I know he depends on those machines to survive. I pray for all other parents of preemies going through the same thing, and I wish you, your baby, and your family all well. Thank you for your time.
Sincerely,
Brittany H.
Brittany H.
Houston, USA - Saturday, April 08, 2000 at 00:15:57 (EST)my daughter megan was born 29 weeks gestation she is 2 years old now. When she was one years old she was diagnosed with cerabel palsey,spastic diplegia so she is unable to walk or sit up.i was just wantin to talk to other parents with premature babys because when we left the hospital with her we were told she was fine and should have no problems at all.thanks so much for your time to listen and i hope i get a response.
sincerly,deborah liles
deborah liles <dliles@prodigy.net>
independence, united states - Tuesday, April 04, 2000 at 13:02:43 (EST)MAKENNA WAS 6 WEEKS EARLY. SHE WAS BORN IN OCT. 1999. THIS WAS THE SCARIEST TIME IN MY HUSBANDS AND MY LIFE. I GOT VERY SICK WHILE PREGNANT WITH HER. SHE WAS 3LBS 11OZ AT BIRTH. SHE WAS SMALL BUT A FIGHTER. WE WERE LUCKY SHE ONLY HAD TO STAY IN THE HOSPTAL FOR TWO WEEKS. TODAY SHE IS 5 MONTHS OLD AND OVER 12LBS. WERE JUST STARTING WITH SOME SOLID FOODS.
TERRI ZAISER <o1t2zaiser@aol.com>
TABER, AB, CANADA - Friday, March 10, 2000 at 05:22:03 (EST)TY'LEYCE IS MY PRECIOUS MIRICLE DAUGHTER, SHE WAS BORN 9 AND A HALF WEEKS EARLY. I MUST SAY HAVING HER SO EARLY WAS THE SCARIEST THING I EVER WENT THROUGH. I HAD HER IN OCT. OF 1999.SHE WAS BORN IN MAGEE HOSPITAL IN PITTSBURGH, PA. IN MY OPINION IT WAS THE BEST HOSPITAL TO BE AT IN MY SITUATION. I FEEL IF IT WERENT FOR MAGEE HOSPITAL MY LITTLE PRECIOUS TY WOULD NOT BE HERE WITH ME NOW.ALL IN ALL MY BABY IS DOING REALLY GOOD. SHE IS NOW 5 MONTHS OLD AND WEIGHS 10 LBS. UNFORTUNATELY SHE IS STILL ON APNEA AND HEART MONITORS BUT WE EXPECT TO LOSE THEM BY THE TIME SHE TURNS 1 YEAR OLD. ANYBODY WHO IS GOING THROUGH THIS OR IS ABOUT TO, LET ME TELL YOU IT CAN BE A LONG ROAD BUT IT IS WORTH IT THE WHOLE WAY THROUGH.
marcie redmond <marcieredmond@cs.com>
tucson, us - Thursday, March 09, 2000 at 13:21:16 (EST)