Micropreemie chat today

micropreemie1Please join us today, October 13th, at 1 PM EDT for a #preemiechat about micropreemies, babies born at less than 28 weeks and weighing less than 800 grams. Share your experiences and challenges. Help others parents currently surviving the NICU rollercoaster with tips on things that really helped you survive those long days, weeks, months.

Our thanks to Amanda Knickerbocker for suggesting today’s chat and to Melissa McMurchy for this amazing photo of one of her twins. We’ll see you on Twitter at #preemiechat.

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28 Responses to “Micropreemie chat today”

  1. Tracy Sanders Says:

    My micropreemie was born on April 6, 2002, weighing in at 550 grams. He is now 9 years old, in the 4th grade. He has been in the gifted and talented class since 1st grade. He is his Class President, Student of the Month of September, and Student Council Representative. Needless to say, he has not only survived, but has also thrived.

  2. Kathie Worrell Says:

    do you have to have twitter?

  3. Tracy Sanders Says:

    Forgot to add, he was born at 25 weeks, 1 day. Thank you MOD!! In fact, he will inquire about raising funds for MOD at his next student council meeting!

  4. Stephanie Paylor Says:

    My Micro Preemie Miracle, Aubrey Sage, was born on January 28th, 2011 at 24 weeks gestation weighing 490 grams (1 lb 1 oz) 11 1/2 inches due to preeclampsia. She spent 4 months (117 days) in the NICU. It was the scariest time of our lives. They didn’t think she would survive the first few days of life. At birth, the cord was around her neck twice and they had to give her a shot of epinephrine to breathe. She was on the oscillator for a little over a month, then the conventional vent, CPAP, high flow nasal cannula, and regular nasal cannula. She had PDA ligation at 25 days old and got through an infection, just to name a few parts of her NICU journey. Now, she is 8 months, 4 adjusted, and weighs 11 lb 8 oz. She has come so far. She truly is my Micro Preemei Miracle. My mission is to spread awareness of Micro Preemies because having Aubrey 4 months early has changed my life profoundly. There is a family from England that is making a movie called “24weekers”. Please “like” the facebook page. The trailer will be shown on Oct. 20th in England and they hope to bring the movie to the US also. We somehow have to raise more awareness of Micro Preemies because no one understands us other than other Micro Preemie parents.

  5. Tina Whitaker Says:

    My micro preemie was 368grams and 9 inches long. She is now almost 3 years old old and weights 19 pounds and 31.5 inches long! We have spent over 6 months of her life in the hospital. She was failure to thrive and has gerd which led to getting a button. Now we only use it to supplement. She has had two eye surgeries but is doing pretty good for coming from where she did! Im so grateful for fothe technology that we have now and for all the ppl that helped us along the way. Abrianna Madison is truly a gift from God that i all never be able to repay him for.

  6. Katy Says:

    This is always my question… the definition of micropreemie… My daughter was born at 25 weeks 0 days and faced the challenges of being born that early, BUT she weighed 900 grams at birth (dropped to 810). Does this not make her a micropreemie?

  7. Nancy Reyes Says:

    I as well had a 24 weeker. My daughter Terri M.A Lopez was a grand miracle. I remember it was the most scariest experience in my life. Terri weighed 500 grams.. When taking her to the NICU she was covered in tubes. I didn’t know what was of my daughter. I cried so much, and I I felt that it was my fault because of my health issues ( me having Lupus and a post liver transplant patient with serve high blood pressure). I always kept positive .. Thinking that she will survive all this. She had a PDA at one month after she was born. Her breathing and heart rate would drop so sudden, I was so scared but always kept calm. Weeks went by and slowly I was able to do skin to skin .. Which felt so amazing. Just be there every single day. I was a parent that was there everyday except 2 day out of 4 month and a half. Driving 23 miles was nothing to me for my daughter. Terri came home with oxygen, but then later removed.
    Now she is soon to be five years old and is very healthy. Terri is the smallest in her class,but very smart. Her nick name is SkinnyMini. She is full of life and energy. People could tell that she was preemie, but a preemie that wanted to be here in this earth.
    I just recommend to ask questions to your child’s doctor . Don’t be afraid. Ask for updates on the condition of your preemie. Be there everyday .. Talk to your preemie. Get familiar with the nursing staff. I did. White Memorial Hospital NiCU helped me so much to cope with the preemie deal. I didn’t know anything, but now I’m glad I went through this experience .. I appreciate myself as a mother and the sacrifice I went through.

  8. Jen Wilbur Says:

    My identical twins, Brooke and Jamie, were born July 28, 2010 at 24 weeks gestation due to complications from TTTS. They weighed 530 and 550 grams, respectively. Jamie was only with us for 2 days, but Brooke pulled through. She came home after 99 days in the NICU at 38 weeks gestation. Our hospital days seemed to go on forever, which made it hard to believe that I hadn’t even reached my due date when we brought her home! She had a PDA ligation, a bilateral brain bleed, a permanent VP shunt placement, feeding struggles, and numerous apneic episodes while we struggled with intubations and extubations. She really turned a positive corner during her last couple of weeks of hospitalization, and we were fortunate to bring her home, completely free of tubes and oxygen.

    She is now 14.5 months old, weighs 19lbs and is a total joy! She has physical delays, but is sweet, smart and social and loves her books and toys. We are constantly amazed by her.

  9. April Holloway Says:

    My micropreemie was born on May 27, 2007 at 26 weeks gestation. He was 2 lbs 3 oz. 14 inches long. He was in the NICU for 9 weeks, discharged at 36 weeks gestation, only weighing 4lbs 15oz. the day we were discharged. He has been our healthy miracle micropreemie ever since. He is now 4 and going to preschool. No one can believe it when I tell them that he was born 3 months early. It’s very AMAZING now a days what they can do. We owe it to the NICU nurses and doctors….they did an AMAZING job in taking wonderful care of our baby boy. He has grown into a wonderful HEALTHY, SMART little boy that we are so proud of!

  10. Brandee Says:

    our son kenneth was a 25week weighing 1lb 11oz he went through alot being in pittsburgh for 175days. it was a roller coaster ride for everyone but he was a fighter and he is doing really good now. he got chronic long diease but other than that a very healthy little boy. i got him baby can read off the television and he can say almost all the words he is very smart.

  11. Lindsay Says:

    Kathie – Yes, you need to go to Twitter.com in order to participate/comment. Log in to #preemiechat. If you just want to watch the conversation, you can go to search.twitter.com and put #preemiechat in the search box.

  12. Lindsay Says:

    Katy – There is no hard and fast definition of a micropreemie. It varies depending on who you talk with about it. In my eyes, yes, your daughter certainly would be a micropreemie!

  13. Tiffany Says:

    My little miracle was born at 26 weeks gestation on July 11 2004. She weighed 2lbs 6 oz and 15 inches long. By far the scariest and most stressful time in my life. But shes a fighter. She was in the NICU for a little over 9 weeks and came home weighing 4lbs 15 oz. She is an amazing, smart, beautiful young lady. She is noticeable smaller than other kids in her class but that doesn’t stop her from doing anything she wants to accomplish.

  14. Brittany Says:

    My son Jaydan was born at 24 weeks 0 days weighing 1 lb 10 oz. It seems big for a 24 weeker, but that is only because Jaydan was born with internal bleeding from his liver that the doctors didn’t discover until he was 3 days old. They told me from that point on that he would not make it because the bleeding wouldn’t stop. I was told everyday for 2 weeks straight that he wouldn’t make it through the night and I should just remove his breathing tube and let him pass comfortably. Being a mother that has had a miscarriage before, I know when a baby is ready to go they will in their own time so I refused to be the one to let him go. Jaydan had PDA, chronic lung disease, internal bleeding from his liver, CMV, sepsis, apnea, low heart rate and multiple bacterial infections. The road ahead of me looked so grim, but I kept faith in my child. After weeks of blood transfusions and antibiotic injections, Jaydan’s fate turned around to everyone’s surprise (except mine). Jaydan spent a month on the oscillator, for a week he was at 100% oxygen. He spent a month on the ventillator due to multiple infections. He had 2 laser eye surgeries to correct his stage 3 retinopathy in both eyes. But to everyone’s surprise once again my baby boy came home on his due date of 12/24/10, truly my christmas miracle. He was on oxygen for 2 months once he came home, but suffered no other known side effects of bein born prematurely. Jaydan is now 13 months old, 21 lbs, 26 inches. For anyone who has ever been told there is no chance for your child, my story is to show you the doctors do not always know what they are talking about. A mother’s intuition supercedes all.

  15. Patricia Major Says:

    My “micro” preemie was born at 27 weeks (literally 2 hours into the day) weighing only 750 grams. She never needed oxygen or blood transfusion. Never needed anything except food and love. She’s almost 10 months old now, but has lost 3lbs since July. Her eyes and hearing are perfect and other than the fact that she does not want to crawl at all – her personality shines through lol. I had pre-eclampsia and almost died (docs say 24hrs more and both of us would have been dead). Thank god for Sunnybrook in Toronto because honestly, I went to the nearby hospital here in Bowmanville two days before and my OBGYN a day before and they said I was fine…god I wish I could sue them

  16. Barbara Bernard Says:

    My son Ryan was born November 2004, 1lb. 13oz, at 26 weeks. He was our first born and I was never aware of micro-preemies. At the time, I didn’t know the roller coaster ride my husband and I would experience ahead of us. I remember the NICU doctors telling us, “We won’t know the extent of the damage until he’s of walking and talking age.” All the medications have “pro’s and con’s” regarding their effects and that we may not see the impact until he is older. We were really scared, but our faith to God brought us peace, again & again.

    Ryan spent 3 months in the NICU (lots of issues came up during his stay at the hospital) and came home with alot of medications and on oxygen with a pulse ox/apnea unit attached to his every move. He had physical and occupational therapy every week for months to help him work on his motor and development skills (low muscle tone). I had a doctor appointment at least once a week with a specialist. He was smaller than the rest of the children his age, but he was developing and growing….. that is all that mattered. He would eventually catch up with his peers. Today Ryan is in 1st grade, loves life, always drawing an invention he is going to design someday and is an active little boy.

    My second son Cody, was a 33 weeker, born February 2008, 3lb. 3oz. His stay at the hospital was a month. His medication and doctor visits were not as often as his brother. Today, Cody is three and playful loving little boy.

    I didn’t understand why both of my pregnancies were pre-term with no warning. Both pregnancies were normal until the day my water broke. Doctors could not explain it… “it’s just one of those things that happens,” they said. I just recently went to the GYN doctor for pelvic pain and they discovered I have a Bicornuate Uterus. In other words, a uterus with a heart shape versus oval shape……this is the reason for my preterm labor.

    I hope my experience can help someone that might be in the same situation.

  17. Tiffany Gleason Says:

    My daughter was born at 22 weeks at 1.3 pounds. (I don’t know grams) and dropped under a pound after birth. She had a PDA that closed on it’s own, after a trip to Boston for surgery that the Dr would’t do due to her being so small. She came home on O2 and a monitor for a couple of months. Amazing enough she is 2 and 1/2 and weighing in at 23 lbs and doing great. She did have eye surgery for a eye that turned in but that is it… she is just as wild as her 3 1/2 year old brother.. the nurses and dr’s were great…

  18. Dawn Says:

    My son was born on May 22, 1995 at 23 weeks, weighing 1 1/2 lbs. He spent 95 days in the NICU.
    He is now a healthy 16 year old High School Junior.
    We have the March of Dimes to thank for his miraculous outcome. Our son has served as a local March of Dimes Ambassador and we have participated in March for Babies (formerly Walk America) every year since he came home from the hospital. He has consistently been the top fundraiser in our state and ranked in the Top 20 individual walkers in the US.

  19. Alison Says:

    I am reading this after spending the day in the NICU with my two twin boys. They were born 6 days ago at 25.2 weeks and both weighing 1 lb and 8 oz. So far we have a uneventful 6 days, but know that this calm probably won’t last. We have been in the NICU before with our daughter who was there after being born at 32 weeks (she is now a wild and crazy 2.5 yr old)! Having a micropreemie is a different all game and I am finding such hope when reading everyone’s stories and can’t stop sharing them with my husband. Thank you for taking the time to share your stories – reading from someone who has walked in my shoes only makes us stronger for our “rollercoaster” ahead!

  20. Julie Says:

    My twins, Pepper &Oliver were born at 26 and 4/7 due to me developing preeclampsia. They were both micro preemies. Oliver smaller than his sister heartbreakingly passed away the next morning. Pepper was on the oscillator for a long time with breathing issues. Had emergency surgery for a perforated bowel. And many other complications and another surgery. All in all a 162 day stay in the NICU. She is now 15 months old. Beautiful, funny, chubby, loves to play and read books. If you didn’t know, you would never guess what she has lived through.and I just refused to believe I was going to leave another baby behind. She was coming home with us eventually.she has the strongest will. I believe she can do anything.

  21. Karherine Gayman Says:

    My little miracle, was born right at 28 weeks, and 2lbs, 5oz, & 15 3/4 inches. She was a very sick baby, she had to be heliported to a NICU 45 minutes away. She was born with a Lung infection, and Skin infection, and had to have a variety of antibodies to try to help. When the normal antibodies didn’t work, she had to get a Pic line, where they go through a vein close to heart, that is stronger in micro-preemies, to be able to give her an arsenal of stronger antibodies. This finally worked after she had lost weight & was a No-touch baby, due to her skin was so infective it was see through red &would leave sores. We got through that difficult period with doctors not knowing what would happen next. But I knew–God was in control-and He would see that my baby was ok-&not just ok, but thrive!!! We kept Faith-it wasn’t easy, but finally we were able to hold her!–at 2 weeks old!!!- then unless she was having a bad day, got to do kangaroo care.–this was the only time her stats (oxygen levels) would be up. She had problems with lungs &had to come home on oxygen &monitors, after 2 months in NICU on day after my husbands birthday & our anniversary!!-what a present!!-our 4lbs 5oz bundle of joy! She had to have oxygen for 9 months &apnea monitors for 15 months, then a helmet to reshape her head, &she didn’t start walking until she was 24 months. But she just turned 5 yrs old & other than slightly being a little behind her peers in development, you wouldn’t be able to tell she’s a preemie-she is taller than her peers!! God does miracles!! We were told she would have all kinds of stuff wrong& we said NO!–we have power of the tongue(life or death/good or bad) over her life & when someone gave us a “bad” word, we would refuse that(like they said she would have asthma-we said no &prayed over her &she doesn’t). My prayer is if you are going through this,read -(Psalms in)-the Bible & pray & BELIEVE!

  22. Christine Patch Says:

    Our twins were born @ 27 weeks. William was 2lbs 6oz and Kevin was 1lb 15oz. We spent 4 months in the NICU. Kevin’s APGAR 0/1/0. They brought our surprise little miracle back. (He was hiding behind his big brother for 5 months.) Both had Stage 3 brain bleeds and only Kevin required a shunt. Multiple eyes surgeries and hernia operations, dealing with CP, MR and severe developmental delays. Kevin had his shunt replaced 2 years ago. We’ve had many ups and downs over the years, but come this December we will be celebrating their 12th birthday. For all of the parents currently in the NICU, hang in there, be strong and ask all the questions you have!

  23. Sandy Lea Says:

    My micro preemie was a twin born at 24 weeks and 713gms. Her twin sister died but my daughter is now 17 and brilliant. She gets academic awards at school and is an amazing person. She had everything as a prem and recovered from it all. I am so proud of her.

  24. Lindsay Says:

    Sandy – You should be proud of her! It sounds like your daughter went through so much and has truly blossomed. It’s wonderful to hear that. Thanks for sharing.

  25. Misty Says:

    My micro preemie son Liam James was born march 25, 2012 at 25 weeks 5 days weighing 1 pound 7 ounces and 12 inches long. He had a PDA but with one round of medication it was closed. He was doing well for 7 days and then got a perforated bowel and had to be helicoptered 3 hrs. Away to AR children’s hospital to have surgery. While there after 3 weeks his PDA reopened so this past Friday they had to do the surgery to close that. Now he is a month old weighing a whopping 2 pounds and 13 1/4 inches long. He is our miracle baby boy…and prayer is what got him here and God is in control!!! It has been the BEST & WORST experience in my life. Thank you God for all your Blessings. Can’t wait to hold him, hug him, feed him, show him to his 2 sisters, take care of him, take him home, Love him forever, teach him about God.

  26. Lindsay Says:

    Misty – Little Liam James sounds like an amazing fighter. I wish him and your family great strength during these tough days. Be sure to connect with our Share Your Story community where you can connect with other NICU parents and find amazing support.
    http://shareyourstory.org/

  27. Allie Says:

    I am a grandma to a beautiful baby girl born Jan 31st only weighing 1 pound 1/2 ounce. My precious daughter feels like she is running out of hope at times. Our gift from God has had no serious issues besides her lungs,but her lungs are severe. She was on the jet for a long time with a short break to the conv vent 2 times and back to the oscil vent(like the jet). My daughter has only held her baby 5 times. Our gift from God is 2 months & 5 days old & she is at 100% oxygen & was still fighting to stay in the 80s. We have not read many stories of such long vent situations. Can anyone share some hope for these lungs? We have faith,yet it is such a scary & heartbreaking rollercoaster. I mean…2 months + on such strong oxygen help…its scary. All the wonderful blessings we read help so much.

  28. Lindsay Says:

    Allie, I’m sure your daughter is riding a roller coaster of emotions right now. Please tell her to visit our Share Your Story community http://shareyourstory.org/ where she can connect with other parents and find support and renewed hope. Best wishes.

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