2000 Visitor Stories

Preemie Twins Stories Submitted by Visitors – 2000

 
kelley and shawn gos   01/Dec/2000:23:24:47
WE HAD A BABY BOY NAMED SHAWN JR WHO WAS BORN AT 32 WEEKS AT MASS GENERAL HOSPITAL IN BOSTON MASS. ON MAY 12, 2000 HE WEIGHED 3 PDS.9 OZ.AND WAS 14 3/4 INCHES.I WAS BROUGHT IN TO HAVE A EMERGENCY C-SECTION BECAUSE MY PLACENTA MOVED A AWAY FROM THE WALL AND WAS CAUSING BLOOD CLOTS THAT WERE BIGGER THEN MY SON.HE WAS BORN BLUE AND LIMP AND WAS BROUGHT TO THE NICU DEPARTMENT WERE HE SPENT 1 MONTH 1 WEEK HE WAS ON A RESPIRATOR FOR 4 DAYS AND HE 2 HAD BRADY AND APENEA EPSIODES HE WAS TO COME HOME 4 TIMES BUT DID NOT DO SO DUE TO THESE EPSIODES. FINALLY THEY
DECIDED TO PUT HIM ON CAFFEINE CITRATE WHICH WAS GIVING ONCE A DAY TO MAKE SURE HE DID NOT HAVE ANY MORE EPSIODES HE WASTO GO 5 DAY SPELL FREE BEFORE BEING SENT HOME WITH THE HELP OF THE CAFFEINE.WHICH TODAY IS ALMOST 7 MONTHS WEIGHS 12 PDS 6 OZ AND NO LONGER HAS PROBLEMS WITH APENA AND D SATS.UNLIKE YOU I HAD A GOOD EXPRIENCE WITH MASS GENERAL NICU THEY TREATED MY SON WONDERFUL AND DID NOT SEND HIM HOME UNTIL HE WAS READY.I AM SO GLAD…
 
Claudia Delgado   17/Nov/2000:17:21:39
Hi everyone my twin boys were born at 27 weeks weighing in 1 lb. 10 oz. -&- 1 lb. 11 oz. Wow what a emotional rollarcoaster the NICU was. They
were at the childrens hospital at Stanford, which is about 30 minutes away. Driving every day to see them for 4 and a half months was hard…but I just thank God that they are alive. My boys are now 3 and although they are developmentally delayed and one has vision problems I still can’t believe sometimes they made it. All these preemies are such troopers. A true insipation to me. If anyone
out there wants to talk or just vent please email me knowing I know what it’s like. That is often a frustrating feeling since none of my friends with kids really know what having a preemie is like.
 
Heather   11/Nov/2000:01:33:37
I just wanted to say congratulations and best wishes to everyone who views this page and reads the stories of all these tiny little troopers who make it their business to light up our lives, even if some only for a short while. My best friend had a baby 4.5 months too soon and he was
not even a pound. After struggling for an hour he decided he would be better off at home with his TRUE Father, so I want to say hello to my Angel up in Heaven, Colin Michael .
 
jodi bellomo   23/Oct/2000:00:14:58
Thru the past 4 yrs of parenting my twin 4 yr olds, born at 26 wk gestation, I need to tell parents of other preemies, it is so important that if you can be with them in the NICU it makes all the difference, they need to feel your touch and hear your voice. and when they come home never treat them different than a full term baby take them to early intervention find out what you need to work on and do it. My daughters were in intervention from 3mos until 18mos., they were released at a 32mos level and they threw the doctors threw a loop with their milestones and strides. I never went by my girls corrected age, I always used their real birthday and I spend every minute I can helping them grow emotionally and intellectually. They are now in
preschool and they are 2 of the smartest kids in their class (if not the smartest)!!!!!!!!!!!!!!! They know that they are special but not because they were preemies, because they are Jackie and Jocie. Although, the doctors will tell you your children….
 
Jodi P. Bellomo   22/Oct/2000:23:59:53
My daughters Jacqueline 2lb6oz and Jocelyn 2lb2oz were born on August26,1996.,at 26 wks gestation. Both needed help breathing, jaundice, BPD, blood transfusions, apnea, etc. Today they are healthy 4 yr olds, I just wanted to add this to help anyone going thru this experience now. Until my girls were no longer on meds I kept a log of their meds, (they were on so many), I used 1 notebook for Jocie and another for Jackie so that there was no confusion. This made a hard situation a lot easier. Mommies of preemies have a lot racing thru our minds, and the log books helped me to know which child had her meds and who needed theirs. This also worked with feedings. We tend to get a lot less sleep than parents of full-term healthy babies, and dealing with 2 sick preemies the log really made a difference. Also, I called the dr.
for everything, that is what he/she is there for so don’t feel you are being a nuisance that is in their job description. God be with you all and Bless all of our children.
 
Jodi P. Bellomo   22/Oct/2000:23:00:32
Thank you for your story it brought back so many memories of my experience with my daughters Jacqueline 2lbs6oz and Jocelyn 2lb2oz and their stay in the NICU. They were born at 26 weeks gestation. There was many a days I thought I was not going to make it thru, but seeing these 2 tiny little babies able to make it made their mommy keep going. Now they are 4 years old, they were born on August 26,1996., and they are the joy of my life. I couldn’t imagine if things would have turned out different were I would be without them in my life.
Thank you again,
Jodi Bellomo
 
julie   06/Oct/2000:15:09:12
My water broke at 24 weeks, and after 8 weeks of bed rest Chloe Rose was born(32 weeker)at 5#6oz; but since I had no water that 8 weeks she was very sick. She had 3 blood transfusions, jandice, hydrcephalos, (sp?),+ much more. The water on the brain was not discovered till half
her brain was eaten up by the enlarged ventrical. She came home on O2. Her first 2 years required therapy for EVERY MILESTONE, but she is catching up. She is 25 months old -&- the joy of my life. Her start wasn’t an easy one, but looking at her, you’d never know it.
 
Robin S.   31/Jul/2000:22:31:48
My daughter Sara was born at 28 wks, 1lb 7oz on 1/14/92. She came home 7/5/92 weighing 7lb 6oz. She had the usual preemie problems; BPD, severe reflux, Grade 2 bleed, kidney stones, etc. She has had a
feeding tube since before she came home, and has yet to learn to eat properly. She will have to repeat kindergarten because of learning difficulties and has recently been put on Adderall for her attention problems. She now weighs 35 lbs at 6 1/2 yrs of age. I read many preemie stories on the net and would be happy to hear from anybody who
has similar experiences.
 
Tabitha McIntire   20/Jul/2000:20:50:01
The doctors didn’t even think that both of them were going to make it, but I delivered two beautiful little girls. Both girls were doing great within 3 days they were both in room air and they started their feeds. The only set backs were that Desiree had a heart murmur and Emily had a small case of jaundice. I received a phone call on the 7th,
it was the nurse saying that Emily was a little sick and that the doctors thought it was an intestinal infection. When we got there the doctors said that she did in fact have NEC, they had started MEDs but they didn’t seem to be helping. They made the decision to send her to surgery. She made it though surgery, but they had to remove almost all
the small and large intestine. Which meant she probably would have to be fed intavenously for the rest of her life. In the hour after surgery she was again on a vent and they had to recesitate her 3 times. We needed to make the hardest decision of our life and we chose to remove the vent. Want….
 
Tabitha McIntire   20/Jul/2000:20:31:10
Our identical twin girls Desiree Leslie and Emily Jean were born on April 27, 2000. Desiree was the first to be born weighing 3lbs 10 ozs and Emily weighed 2 lbs 9 1/2 ozs. They were born at 32 weeks gestation. I guess I should probably go back to the beginning, I found out I was pregnant in November of ’99, which was totally by mistake. Then in December I found out we were having twins, my doctor believed they were monoamniotic (meaning they were sharing the same amniotic
sac) so I had to change doctors. Then when my new doctor did an ultrasound they ruled that diagnoses out and they thought I had stuck twin syndrome which meant a second opinion and another new doctor. They sent me to a specialist in Grand Rapids which is a 45 minute drive
from where we live. He said I did indeed have stuck twin syndrome, it was caused by twin-twin transfusion. This was all occurring in my 18th week of preganany, from that time until my girls were born I had 11 amniocentisis. The doctors did…
 
Tabitha McIntire   20/Jul/2000:19:53:51
 
Steve and Tessa Kirsten and Chesley’s Playground 04/Jun/2000:21:41:59
Your twins look wonderful. We can relate. Our girls were born at 28 weeks and have survived Twin to Twin Transfusion. They still have not caught up today. At almost 14 months they weigh 15lbs and 18lbs. However, they have been blessed with no disabilities; so far!. You
have a wonderful page.
 
Natalie Potter   31/May/2000:20:52:37
Hi! I appreciated reading all of yoru stories. It is really nice to know you aren’t alone. I have two children. I went into labor at 23 weeks with my son, but miraculously due to faith, prayers and a wonderful doctor he wasn’t born until 38 weeks and was absolutely fine. It was a horrible four months, but the outcome was worth it. When I was pregnant with my daughter I was again having a difficult
pregnancy, and at 31 weeks went into labor. It was temporarily stopped with bedrest and medication. Three weeks later, I went into labor again and spent the next eight days having mild contractions every five minutes while my doctor insisted that it was his policy not to deliver
until 36 weeks. Finally he consented and allowed me to have the baby and Kyrie Nicole was born shocking everyone when she tipped the scales at 7 lb 1 oz. But she was not breathing and the NICU team rushed her away from me. Somehow they got her breathing and they sent her home with me the next day saying…
 
Sabrina   30/May/2000:19:41:12
I’m so glad your girls both made it and that you put together a site for preemie parents and others to visit. I know you cherish your children and that they are a great joy to you.

In looking through the guestbook, I am feeling, though, like I’m the only preemie mom whose baby did not survive who has come to your site. Maybe I’m just the only bereaved mom of a preemie who still wants to read about other preemies’ stories…but to me each baby is precious
and a miracle, and I am heartened to know that most preemies do come home.

Our son Ethan was born at 31 weeks, weighing 2 pounds, 7 ounces. Little E lived his entire life in the NICU. He lived for 4 1/2 months before his death on January 19, 1997. Ethan had very serious problems with his lungs, worse than most preemies his size and age, because his medical
condition was complicated by Marfan’s syndrome, which affected the lung tissue and made it impossible for Ethan to grow healthy lungs. We have millions of Ethan stories and…

 
viktoria jovanovic   18/May/2000:05:22:24
Hello, our daughter was born at 23 weeks gestation at Mount Sinai Hospital in Toronto Canada. Suffice it to say that we have had our share of ups and downs but thanks be to God, all is well and we are due to come home any day now. To date, she has been in hospital for 105
days of which the only major problems have been respiratory. At the moment we are trying to fix her eyes and then we are homeward bound. Thank you to all of the parents who have written stories of support. They have really helped us manage our very difficult time.
 
Cathy Dowell   26/Apr/2000:14:41:35
Hello, I just read your story and was brought to tears as I always am with the preemie stories because they hit so close to home. My daughter was born on 11/11/99 at 27.3 gestation weighing 920 grams, 2lbs, almost 1 ounce. She came home on 2/4/00, she was due on 2/13/00. It was (and I’m sure always will be) the biggest nightmare of
our life. It’s amazing how callous the doctors can be. It still is a struggle now, but more within ourselves than anything else. Our biggest complication now are her eyes. She had a lensectomy in her L eye and wears a contact lens in that eye daily. We are very happy to have her and she is a very spoiled little girl. 🙂 🙂
 
lisa   18/Apr/2000:10:50:00
hi I ENJOYED READING YOUR STORY. I ALSO HAD 2 PREMIES . ONE WAS BORN AT 33 WEEKS, THE OTHER AT 30 WEEKS. BOTH DUE TO HIGH BLOOD PRESSURE. THEY ARE BOTH DOING GOOD NOW, BUT FOR A WHILE IT WAS TOUCH AND GO.
 
Nicky Wallace   13/Apr/2000:04:03:41
 
Donna Wilde   09/Apr/2000:08:49:01
My third was born 14 to 16 weeks premature back in 1985. According to my calculations he was only about 10 to 12 weeks early. He suffered amassive head injury. He needed a shunt due to eccess fluid on his brain. He was big (4 pounds 6 ounces so our doctor mistakenly did not
check him over well enough and missed the fact that his little lungs were not developed. (my babies typically weigh in at 10 to 12 pounds) He was care flighted to Fort Worth Tx NICU where he stayed for 3 months. We made the trip every Wednesday and Saturday. More often if needed. We brought him home thinking that all was going to be ok. It was just the beginning of many trips appointments and surgerys. He got meningitus 2 times in one month. He cried about 20 hours a day and could not eat so finally had to have a feeding tube which he still has to day (it saved
hs life) I don`t want you to think it has been all bad. This little boy his the sunshine in our lives. Through him we have learned many things and met many people…
 
kai   05/Apr/2000:20:31:54
my son was 860 gm at birth 27 wk gest. kids r great
 
christine baker   23/Feb/2000:01:22:28
My twins were born 7-21-92 11 weeks pre-mature. Brett weighed 2lbs 15ozs and Bryce weighed 3lbs 7ozs. Brett was the stronger of the two and first born, even though he was a smaller. Bryce was having a more difficult time breathing and had to eventually be placed on a ventilator. Brett was moving right along being gavage fed and gaining
weight, until 6 days after birth. The neonatalogist came to us and said that he was not digesting his feedings very well and they are going to back off until they have some tests ran. Brett laid there getting worse by the day. His once bright pink skin soon became gray, his body seem to be drained of energy, and his stomach very distended. The
surgeon came in and said that he did not feel comfortable with Brett’s down-ward turn and wanted to immediatley do sugery. He told me about the possibility of a colostomy (which I had never heard of at the time) and also the seriousness of the illness. Brett was then rushed to
surgery…
 
beth   14/Jan/2000:17:40:00
MY TWIN GIRLS WERE BORN 6 WEEKS EARLY THEY WEIGHED 4lb 9oz and 3lb 12oz
when i was 20 weeks preagnant the twins developed twin to twin transfusion syndrome which can be a really fatel condition for twins when the hospital told me i thought i might have to lose them but after more tests they allowed the pregnancy to carry on .then when i was 32weeks i develiped pre eclampsia so i was in hospital for two weeks
then on october the 7 i had a caserian the twins were in special care for two weeks but for the first day i couldnt hold them because they were in incubatosbut by the next day they were both out of them and doing well.
The twins are doing ok now but they have a lactose defficency and they have to drink soya milk

Kim Rowley is the mother of preemie twin daughters, Macy and Mallory, born January 27th, 1994 over 13 weeks early weighing 2 pounds each. She calls them her "million dollar miracle babies." Follow Kim on Twitter, Facebook and Google+.