My name is barbara and i recently had a horrifyingexprience. my son was born on mothers day 2009at 1lb.9oz 23 weeks old gestation.he fought for his lifein NICU for 6months.after the first week he was born,his lungs colapsed on his heart(pneumathorax) and thedoctors gave him 24 hours tolive.itwas the worst dayever so we baptized him and said his goodbye. he livedthru that. he had stage 2 and 3 brain bleeds,stage rushrop of the eyes which he had to have lazor surgery,had multiple bradys which a few were so bad it took 2minutesto bring him back to life. he also got NEC which they tookmost of his intestines out which he has short gut..so many events happend. but he kept fighting for hislife and he is alive and well today.even the doctors say he shouldntbe alive after going thru so much trauma.he is my miracle. he mademe strong and im so thankful to have him in my life speciallyafter i lost my daughter 3 years before him.
Twin girls Holland Mirabell & Eden Deanna were born prematurely at 24 weeks 3 days gestation on July 31st, 2004, 3:02 am. At birth Holland was 1 lb 3.5 oz, 11.5", Eden 1 lb 5.5 oz, 12". This is their story...
This is for everyone that doesn't know the whole birth story.
FROM THE BEGINNING... December 2006 we found out we were expecting...I started bleeding on Christmas Eve and by New Years Day, I thought I miscarried. I called my doctor and asked if I could come in for an ultrasound to make sure the miscarriage was over...so that is what we did. The next day, we went in...I prepared myself for seeing an empty uterus...since I've been through this before. When she put the ultrasound to my stomach, there were 2 sacks! She told us that there were 2 in there and the both looked great!Read on!!!!
My little miracle Amanda Rae was born November 28, 2008 at 24 weeks gestation and 1lb 3oz due to me having pre-eclampsia. I did not get the labor experience I imagined..in fact, I had her by emergency c-section which my husband missed because he was 2 1/2 hours away working at home.
I was hospitalized for almost a week before I had Amanda-the pre-eclampsia threatened to take both of us. My little girl is still in the hospital today, but getting closer to her due date of March 15, and doing very well. She is now 5lb 12 ounces, and taking some of her feedings by bottle.
She is now on oxygen, and probably will be until after she comes home. We have spent 3 months in a divided reality-2 days a week I come back to work in the office-staying with my husbands parents. The rest of the week, I remote in to my job, computer in one hand, baby in the other. My husband is back working the days I am down there with our daughter. We have not been home since this all started..Right now, the Ronald McDonald House across the street from the hospital serves as our home. The doctor says we have another 3 or 4 weeks ahead of us..this has been such a long road already.
Amanda has had a PDA ligation, 9 or 10 blood transfusions, ROP surgery, numerous antibiotics, and she was on a ventilator for 2 1/2 months. I cannot wait to bring my Amanda home.. I would like to tell anyone else out there that has a tiny baby like mine-keep praying, keep going, hang on to your friends and your family, things will get better, and above all else, never be afraid to cry. The biggest miracles always come in the smallest of packages.
After 3 months in to our pregnancy, Aimee and I received the bad news that our baby was not going to survive the pregnancy. We met with numerous Doctors who felt it was only a matter of time before she was going to die. We were told to live our life as normal as possible and there was nothing we could possibly do. One Doctor even said to go home and drink a glass of wine and to go exercise if we feel that would make us feel better. The Doctors seemed to be more concerned with our mental capacity on how we are going to handle the baby’s death. If we heard, “This is not your fault” one more time, we were going to go off the deep end.
I don’t think there was an illness that Kayleigh wasn’t diagnosed with. Our baby was diagnosed at very high risk of Down Syndrome, Spinabifida, other possible Chromosomal Abnormalities, Cardio Effusion, A hole in the heart, Liver and Bowel diseases, and Aimee had a partially torn placenta which prevented normal growth and the cause a handful of other issues. By the sounds of all that from a professional who sees these issues everyday, what could we do? If we didn’t have God in our lives to help our decisions, we would have terminated the pregnancy in a heart beat because this baby may not survive and if it does, it will live a horrible life. I couldn’t argue with a Doctor, someone with a superior level in the educational field, the highest paid care provider who is supposed do whatever it takes to save lives. They said there was nothing we could do. They were wrong!
Kayleigh Anne Freeman was born at 28 weeks, 10 inches long, weighing 470 grams (1 lb.1 oz). She has no chromosome abnormalities, no heart defects, no liver, no bowel and no other issue that will cause her to live a horrible life. What if I listened to the Doctors? What if I terminated the pregnancy?
I have put together a day by day blog to show everyone there is hope, there is a chance, and there is life. While Aimee and I were going through this roller coaster of emotions, we met some of the most wonderful people in the world. They helped us by sharing their miracle stories to show us that God is in charge and no matter what a Doctor tells you, God has a plan for your baby. Kayleigh has touched the lives of so many people and with her story; we want to continue to touch the lives of people that don’t know there is hope. If people don’t know we are out there to help, they may not fight to save the life of their baby. We would have given up if it weren’t for people who gave us hope and for God, who is in complete control, so now we are returning the favor to give you hope.
Posted by deeannon 2007/10/31 18:20:00 (3768 reads)
Hello everyone. It has been a long time since I was on here and gave you all an update on Sierra. Well lets see where to start. Well in 3 months she will be 4 years old now. Boy did the time go by fast. It seem like it was yesterday when I had her. By looking at her you would not know that she was born almost 8 weeks early. The only thing is that everything is still to small for her. She needs a bigger size shirt then she does pants. In the summer she can wear a size 12 months for shorts. I think this next summer she will final be able to wear an 18 month. Anything higher then that falls right off of her. I can not say that she does not eat because she eats all the time. Everytime I turn around she is telling me that she is hungrey. I remember when she was younger and would in for a check up. The doctor would ask she was eating because her weight would not go up. I would say yes all the time. Going on four she only weights 30lbs.She is like her father. He was the same way when he was her age. She is so smart too. She can remember everything she sees. She gets that from me. She loves movies. She loves to play with other kids too. Does not matter what the age is. Well that is all for now. I hope that everyones little ones are doing good. My paryes are with you all.
My amazing little man turns 4 today... It just amazes me... Jared was born at 25 weeks ago and I never thought things would have turned out this well... Jared has an amazing thirst for knowledge... In just a few weeks he will be starting K4... In our school system K4 is normally for children that need a little extra help... Jared was denied services because he is "on target" developmentally and is even ahead in several areas... He was accepted a few weeks later as a "peer model"... He will be setting an example for the other students... I was elated when I heard this... Jared was slow to walk and talk and do the things that "normal" babies did... for him to be accepted to "teach" the other kids what to do is a huge victory for us... I still remember the day that the Dr. told me "not to expect much out of him" ... boy was he wrong...
Lisa Mom to Jared a former 25 weeker now 4 years old ~When God Gives you Lemons... make Lemonade~ *** Einstein was a preemie too...***
Posted by David L.on 2007/5/2 20:46:58 (3028 reads)
I am a Clinical Psychologist at the University of Miami School of Medicine. My daughter Rachel was born 4 months early at 18 ounces.
Our daughter spent the first 9 months in the NICU with numerous complications and was 14 ounces when we were informed that her situation was hopeless. I am happy to say that she is now eleven years old and has a precious younger sister Amy who was adopted from China. While Rachel has had some special needs, she is the happiest, most delightful little girl imagineable and is in the process of completing the 5 grade. I hope that you will check out her blog.
Professor of Psychiatry and Behavioral Sciences University of Miami School of Medicine I am a Clinical Psychologist at the University of Miami School of Medicine
My daughter, Cora, was born 7 weeks early, in November of 2005. When I went in for my 7 month checkup, I was sent to the hospital due to high blood pressure. Later that day, my OB confirmed I had HELLP syndrome, a pregnancy complication. Cora was delivered 4 days later. At birth she was 3 lbs 4 oz. She spent exactly 4 weeks in the NICU, and was 4 and a half pounds when she came home.
Those days were terrifying and bewildering, but the incredible strength of those infants and the phenomenal care and dedication of the NICU doctors and nurses is something that has left a lasting imprint on my heart. Cora is turning 5 years old this November. She spent her first Thanksgiving in the NICU, and each year I've marked the occasion with a donation to a local NICU.
This year, I'm inspired to do something more significant. I have published a book about my and Cora's experience, titled Outside the Isolette, Looking In.
The book tells Cora's full story and shares my experiences and reactions leading up to, during, and after my daughter's birth.
It includes the personal journal I kept while my daughter was in the NICU, a daily chronical of her development, and the process of our life returning to 'normal'. The proceeds from the book will be donated to March for Babies, to advance preemie research.
My son Korbin was due May 10, 2008 but was born 9 weeks early on March 11, 2008 at 6:44 PM. He was 1lb. 14oz. and just 12 3/4" long. He came home on April 18, 2008 after he was in the NICU for 5 1/2 weeks
Posted by Yolondaon 2009/5/2 19:26:50 (1240 reads)
Hello Fellow PoPs (Parents of Preemies)
I would like to tell all of you about my amazing little girl, D'Lon Grace the NICU Warrior. On June 14, 2005, my husband and met the bravest soul and encountered the greatest love of our lives. Born 17 weeks premature at 23w1d gestation weighing 1lb 5oz. D'Lon Grace came into this world fighting for her life. She spent the first 6 weeks of her life on the conventional ventilator and on July 26, 2005 she extubated straight to nasal cannula/vapotherm (its now called high flow cannula), that day was extra special as it was me and
Dwayne's 15th wedding anniversary and what an awesome present to walk in and see our beautiful girls entire face.
Not only that, she treated us to the sound of her beautiful voice. We decided right then and there we did not need another present in the world, EVER! A month after her successful intubation, Hurricane Katrina hit. My husband and I actually evacuated to the hospital that D'Lon was in as there was no way we were leaving our baby. Thank God we didn’t, because as a result of the storm, 4 days later D'Lon along with 12 other preemies were evacuated to another hospital 3 hours away from home.
The babies were evacuated by the National Guard (helicopter), and the National Guard escorted us out of the city because unfortunately it was not safe for us to through the city without them. D'Lon was out of our sight for about 6 hours, the total time it took for us to get to her. When we arrived at the new hospital she was doing great, and she had already acquired the name "Princess". Reason being, a national guardsman named Mathew gave me hug before he loaded my baby into the helicopter.
He promised me that he would not leave my daughter's side until she was comfortable in her new digs. Well by the time we got there, Matthew was gone, but we were told he accompanied her to every procedure, x-ray, weigh-in, just everything. Once she was settled he sat by her incubator and told her about Hurricane Katrina and everything that was going on around her.
He sat by my little girl's side for 4 hours and left when she was asleep. Matthew if you happen across her story ever, a million thank yous to you!!!! You will never know what your kindness meant to me! D'Lon spent another 6 weeks in her new hospital before being discharged and on October 12,2005, we brought our baby home. All 4lbs 8ozs 15in of her.
She was on 1/4 ltr O2 and about 5 different meds. Slowly but surely we were able to wean her from all but 2 of her meds and she remained on the O2 until she was 2. We not only watched her meet all the milestones we were told she may never meet, but we watched her smash through them as if they were never meant to be an issue at all. She knew her ABC's by sight and she could sound them as well! She counted to 20 unassisted and 10 unassisted in Spanish. She knew all of her shapes including trapezoid and she could recognize them in everyday objects.
She knew her colors, all of them! She crawled, walked, run, climbed and loved to dance. She did it all. Please know that the doctors do not know it all. It is their job to give you the worst-case scenario, but it makes it that much sweeter when our little babies prove the scary white coats wrong! When I was told all the things my child may never do, I made every opportunity a learning opportunity and she was thirsty for knowledge. I was a stay at home mom and my job was to water my seed and please believe I got out 10 fold what I put in. However, I now realize, the teacher was actually the student the entire time.
Although D'Lon was all there developmentally, cognitively, and neurologically her bad lungs remained our biggest problem 3 years later. A cold was never just a cold in our house. Even after coming off the O2 24/7, s he still required it whenever she had fever be it from a cold or an ear infection. Her lungs were getting stronger but we needed more time.
In December 2007, at 2 1/2 years old D'Lon contracted RSV (first season without synagis) and landed herself a 14-day PICU stay complete with 7-day intubation and everything. During that stay it was discovered that she had Pulmonary Hypertension. Probably always had it but the RSV sent her pressures to levels of concern. We discharged from the hospital on the medicine to treat PH, as there is no actual cure.
All was well for about 9 months. She had a lot more energy, we were able to play outside for longer periods of time, she was down to only 1 nap per day, her voice was getting stronger, the sildenafil (viagra) made all the difference in the world. Unfortunately in September 08 she took ill. Just a cough and a little fever so of course we went into preventative mode. Round the clock breathing treatments, Motrin Tylenol combo to keep fever at bay, and trip to peds to make sure everything was okay. Her white count came back a little high, got a shot of antibiotics and we came home on oral antibiotics for 7 days.
Unfortunately, the illness traveled to her lungs, which turned, into pneumonia, which sent her pulmonary pressures dangerously high. We were admitted into childrens, intubated with very high vent settings, but unfortunately her heart and body grew tired after 6 days and on September 26, 2008, The Beautiful D'Lon Grace Toney, NICU Warrior grew her wings. She lived 3 years, 3 months, 26 days, 21 hours, and 47 minutes. I miss her every second of every day.
If you were able to get through this entire entry, bless you!! I share this with you not to scare you, but to give you hope. I have always used our NICU experience and my daughter's life as inspiration. To give hope when the doctors give you none. I used her as the light. I worried when she passed how would I continue to do this when her end result is death.
After a while I realized she is still a success story. She defied many, many odds in her 3 years of life and parents need to hear that in spite of or contrary to what doctors say, these little one pound babies brains can develop normally and these kids can be above average! It may take them some time to catch up, but they can catch up and surpass in many areas. And as for her death, well, if it teaches preemie parents to remain diligent because we know too much to live with blinders on, full term parents to hug and appreciate their children help them realize having a healthy child is a blessing not a right, and just teach people over all to love hard today because really nothing or no one is promised tomorrow.
Life is fragile and the control over it is not ours. We like to believe we can protect our children and we make a valiant effort trying, but the truth is we cant. So love hard today!!!! The one thing my husband and I have perfect peace in is our daughter left this life knowing nothing but love. She was made out of it, born to it, and wrapped in it every single day of her life. We wanted her before she was conceived, loved her before she was born and the minute we laid eyes on her, we knew we would have given our life for hers.
Thank you for reading Yolonda The Beautiful D'Lon Grace's Mommy
Posted by kenmalloyon 2008/12/14 17:11:01 (1847 reads)
Praying for Peyton..
Unreal...
“ That Friday was unreal” John said. “ I’ll never forget it as long as I live.” “It just kept going, you know - like it wasn’t going to stop” His voice trailed off a bit as he said it a second time. “It just kept going…” He shook his head slowly in disbelief and then looked away. He seemed to stare off into a distant void. Was it just a bad dream?
This is a story of premature babies – the ones who make it and the ones who don’t. It’s also a story of how couples, and co-workers move forward after a loss. {*1}
When a baby announcement is made at work, everyone knows how to respond. Its simple - we congratulate, we celebrate and we buy gifts.
But how do you respond, when a friend, a loved one or even a co-worker like John and his wife Becky loose a premature baby? (We lose over 25 thousand preemies every year here in America) {*2}
So what do you say when someone looses a baby? How do you act? In a work environment, many of us don’t know what to say - so we say very little.
The odds weren’t good for Faith Theresa Morales at 1 pound 11 ounces but she had a strong spirit and Faith believes that all things can be
It was not easy for me to get pregnant I had two miscarriages prior and it took me a year to get pregnant. I was having a good pregnancy with no complications my checkups during the pregnancy were all normal.I had several ultrasounds and found out I was carrying a healthy girl, my husband and I were thrilled but we were not prepared for the premature birth of our daughter.
Without warning 16 weeks before my due date labor contractions began, I was 23 weeks pregnant and on my way to the hospital.My obstetrician told me that I was having premature contractions and they were going to try and stop them. I was hospitalized put on bed rest given medications to delay the delivery and steroids to help develop the baby's lungs. The doctor’s wanted to stop the contractions because the baby was not fully developed and shouldn't be born yet. For one week I continued having contractions, the IV's and medications were no longer working.
On Monday morning I started to dilate at 24 weeks how could this be happening to me the only thing racing through my mind was the doctor’s saying it was unlikely that a baby born before 27 weeks gestation could survive. I wanted to CRY I felt helpless we wanted desperately to have this baby and now we were being told her chances of survival were small. A couple of hours later Faith Theresa was born at 1 pound 11 ounces, Faith was immediately brought to the NICU, my husband and I had to prepare for the worst.
The doctor’s told us the first 24-48 hours were critical, when we entered the NICU hours later we were shocked but happy to see that Faith was alive.It was very hard but we had to be optimistic.Faith was in an incubator with many wires, tubes, monitors, and a respirator attached to her, it was very difficult to look at her so small with all this equipment attached to her but crucial for her survival. A couple of days later she developed jaundice and was placed under bililights, she eventually needed a blood transfusion and had to undergo cryosurgery. Faith was on a respirator and was fed through an umbilical catheter, a monitor kept track of her body temp, oxygen levels, and heart rate.The nurses, doctors, and respiratory specialist’s were terrific explaining everything step by step day by day.The staff let us visit all the time and made us feel very welcomed they were a huge part of our support system along with our families…
We went to the hospital every day several times a day to meet with her doctor’s and nurses to discuss her prognosis. We couldn't hold Faith but we touched her softly through the porthole and that was a god sent.Every so often Faith would show little signs of progress and then have a minor set back the NICU staff assured us that that was all normal for premature babies.
I will never forget the first time we were able to hold and dress Faith it was Thanksgiving day.We held her dressed her up and the nurse asked for my engagement ring, she then slipped it on Faith’s wrist like a bracelet that truly put it in perspective as to how small Faith was.
Every day was an experience for Faith as well as her doctor’s and nurses, they would conquer any obstacle thrown there way.Signs of improvement came slow but steady little by little she would gain weight and become stronger.Faith had her 1st bottle Christmas day what a true gift for us. I remember other babies would be released from the NICU and I’d say to myself is our day ever going to come but 99 day’s-4 months later and her eye surgery behind her our day had finally come FAITH was going home…..
We learned so much about the care Faith needed from the staff by the time we went home we felt like professionals. At five pounds two ounces Faith was coming home, she was released with a nasal cannula, apnea monitor and needed two respiratory treatments a day. All has since been discontinued and she goes for physical therapy once a week for stretching exercises.Faith’s vision is 100% and she shows no sign of learning disabilities or long term health complications at this time.Faith believes that all things can be….It’s sure of what it hopes for and certain of what it can’t see.“I’ve always believed in God, but my Faith is much stronger now.”
Posted by CHansonon 2007/7/1 18:42:31 (5571 reads)
* I had originally written this a few years ago for a March Of Dime Light a Little Star in my area. I have updated it at the bottom. This is my daughters (and mine) true story. :)
I was born at 8:39 pm on Friday, March 27, 1998. I was supposed to be born on July 4, 1998, but in order to save both my mother and me from severe toxemia and eventually death for us both; they made me join the world early. I came into the world naturally with my dad near to my mom's side but I never saw them because as soon as I was born and the cord was cut two doctors and five nurses secured me in a corner. The doctors and nurses cleaned me in and out, and did many other things before telling my parents that I was alright for now. Then they took me from the room, without my mom and dad.
It was a couple of hours later, after I was settled into a plastic domed oxygen tent before they let my daddy come and see me. After he saw me, he brought in my grandparents to look at me through the misted plastic covering. I never saw my mommy.
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