Baby Monique Survival Story

March 6th, 2012 by Yvonne

My daughter Monique is 22 years old now. I had her when I was a very young 20 year old at 32 weeks. She was 3 lbs 11 oz when she was born. On day 5 of her life she had emergency surgery for NEC and weighed 3 lbs 2 oz– She had over 70% of her intestine removed. I remember being told that she may not have enough left to reconnect–but one month later she returned to surgery and the resection was successful. She has grown into a very healthy, intelligent beautiful young woman. She had had 6-7 hospitalizations over the years for obstructions due to scar tissue and adhesions but by the grace of God, no additional surgery was needed. No solid or liquids for a few days to give the bowels time to “calm down” seemed to do the trick for her. I look at her today and remember all the things that I was told she may have to endure due to NEC and see a healthy 22 year old woman who is a walking miracle and an example that God sometimes has a different outcome for us than we expect. Prayers to all of you new mothers who are starting on a journey that I have been on for 22 years. If there are questions you have just let me know. Thanks

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13 responses to “Baby Monique Survival Story”

  1. Vina Ferrer says:

    Thank you for sharing your story. You’ve given me hope and I can tell that you’ve been wonderful mom. Monique looks so radiant! My baby boy Tristan born at 31 wks had NEC and lost 60% of his small intestine, his illeocecal valve, and his ascending Colon. He was released after 5 months in the NICU. He was readmitted because of dehydration but is home now. I’m very worried and stressed. Did you have a rough first few years?

  2. yvonne says:

    vina, the first few years were rough, you will learn that tristan’s stool will never be “normal” compared to other children- Moniques stool has never been “formed” always runny and hate to say it “explosive”– i know that talking about stool is embarressing for some people but it is something that you always look at when your child has had NEC- is it green? is it yellow? do they have stomach pain? is a stomach flu just a stomach flu or it something more serious? you will learn to “know” what is normal and what is not normal with your child. Most important, dont ever let a doctor who is not familiar with NEC children make you feel like you are being paranoid. I once had a pediatrician tell me that Monique only had the stomach flu only for her to be hospitalized with an obstruction from scar tissue. You are the mother and the one most familiar with your childs normal day to day routines- As Monique got older she wanted to eat things that I knew would upset her stomach and would be hard to digest, ice cream, things with peelings (apples, grapes), which are all good for you but hard to digest- she knew that if she ate certain things that she would pay for it later with a very bad upset tummy- she is old enough now to know the consequences for giving in to those things she wants to eat — i have tried not limit her food intake but i have told her that certain things may upset her tummy more and to think about if she really wants to eat it that bad- I would love to stay in touch with you and see how tristan is doing on his journey- Prayers to both of you and if there are any questions, just ask!

  3. Vina Ferrer says:

    Thanks for all the helpful information, Yvonne!! It’ll help me prepare for what may happen in the future. and You’re so right! His stool has been the main topic of our lives. Ever since he was released from the ER recently, his stool hasn’t had much form to it like before. Moreover, he hasn’t been wanting to eat bananas like he use to. His doctors also decided to turn his TPN back on . So sad that there’s another set back. He’s 6.5 months but weighs only 9.7 lbs.

    I would love to keep in touch as well! if easier, you can email me at vina1010@gmail.com

    Thanks for your prayers!

  4. admin says:

    Yvonne and Vina, I am so happy you can network together. This is why I created this site and how one can help other with so much impact.
    Thank-you both and I hope this site does everything for you that it does for me.

  5. yvonne says:

    Thank you for creating this website and I feel blessed that God has used you to bring all of us together to share our stories, provide inspiration, comfort and prayers for one another.

  6. Elaine says:

    Thank-you for saying such kind words. I created this site and run thIs group as I believed it to be Caitlyn’s wish.

  7. Marla says:

    Yvonne,
    Thank you for sharing your story. Our little Bailey is almost 2 and also lost 70% of her small intestine. We just had what will hopefully be her last surgery to close to hole from the feeding tube. I know that everyone hates to talk about the stool issues but with a NEC baby it becomes an obsession. My husband and I don’t have any other children so we aren’t really sure what normal should be. Bailey eats everything now and the only issue we have found is with brocoli. That being said, we have never seen a formed stool from her. Did that ever change for you and how difficult was potty training because of that issue? The doctors only tell us the “gloom and doom” side of her future but we too believe that we have a miracle baby that is a gift from God.

    Vina,
    Hang in there! Reading about your baby takes me right back to the time when our little Bailey first came home. There is so much stress and worry. I think this process has aged us 10 years. Just remember that you know your baby better than the doctors. I know it’s hard to stay positive when sometimes the doctors only want to talk about the worst case scenario. Bailey did so much better at home. She began to thrive once she was with us and had that one on one attention. We had a few minor setbacks but things are looking up. Having a baby on TPN is so stressful. I will keep you and your family in our prayers!

  8. Vina Ferrer says:

    Elaine, this site has helped me in so many ways. Yvonne has been extremely supportive. I’m so grateful to you both!

  9. Vina Ferrer says:

    Marla, you’re so right!. I had to learn the hard way trusting Doctors rather than myself. I regret that I didn’t speak up when I felt the GI Drs weren’t making the right decisions. My stress has subsided since Tristan is progressing. Thanks so much for your advice and for your prayers!

  10. Elaine says:

    I am happy the site helps you Vina, it is my therapy and may it continue to be for you.

  11. Yvonne says:

    Marla, My daughter will be 23 this year, and I have never seen a formed stool from her- except for the time my mother tried to feed her whole milk _ a no!no!- it hurt her really bad—as for food, I have found that anything with skin or peelings seem to cause a bellyache and an upset tummy- like grapes, apples, baked potatoes, —monique is old enough now that she knows if she eats those things that the consequences will be a bellyache and time in the bathroom. Vegetables seemed to be really hard on her- like corn and broccoli– I know that vegetables are important but sometimes you have to try to substitute one vegetable for another. I will tell you that over the years she has been hospitalized for “scar obstructions”– make sure you have a good doctor who will listen to you- you know when a normal bellyache is normal and as your child gets older they will know the difference– she has never had to have surgery- usually a few days of clear liquids and anti-imflammatories to reduce the inflammation of the bowels did the trick- but we ran into a problem with one doctor here who thought she was “drug seeking”- i had her transferred to another hospital and thank God for the doctors there- they took great care of her and the obstruction went away– Monique recently had scar revision surgery for the scar she had from her NEC surgery- if in the future any of you want to do this- wait until our child has fully grown and preferably in their 20’s– Marla- I always look at the color of the stool– green- not good— yellow–not good— if those two colors are there then i know she probably has an infection- I have found that monique did have a lot of gastrointestinal infections— i hope all of this has been helpful– please feel free to ask anything– I am glad that God has allowed me to use Monique’s story to help others!

  12. Liz says:

    Thanks for your story 🙂 We too obsess over size, shape, and color of our sons stool. I’m more frustrated that he isn’t BM potty trained yet but I assume that when he is ready he will go on the toilet again. I can’t see him being 15 and still holding it in to go hide and do his business. For whatever reason our little boy got bound up a year ago and has never recovered quite right ( if right is loose explosive stools ) No one can explain why, and besides being backed up, the xRay’s all look okay the doctors tell me. I’ve also gone on the theory that if something hurts your tummy to eat ( like broccoli upsets my stomach if eaten raw ) take that times ten for your NEC baby.

  13. Leighann says:

    My son Gary who is 33yrs old (lost 20cm of the ilium, iliocecal valve, total colon down to the lower sigmoid) can’t eat certain foods. He got totally stopped up once at age 14 by eating a bunch of sunflower seeds. He drank a laxative bottle to get that to break up..At age 18 he had to have surgery to remove alot of abdominal scar tissue from his remaining intestines. He spent 9 months in the hospital post birth. Weighed 11lbs when discharged. His stools have always been loose and explosive at times. He has never been ashamed of his scars, but has been somewhat self conscious about his very audible bowel sounds at times. He has to avoid drinking alot of caffeine drinks as they dehydrate him. Sprite is best for soda. Mostly Gary knows what kills his stomach and avoids it.
    With our kids (even when they are adults) we as moms always have one eye open on them. I ask him from time to time how he is feeling. Oh yes, once when Gary was 1yrs old he got Salmonella and was hospitalized for that briefly for fluids and antibiotics. He also had a mild case of hydrocephalus when he was between 1 and 2 but it resolved on its own without shunts. I wrote Garys story on another page on this blog site if you want to read about his history. He is my blessing and I am so thankful he survived against terrible odds. God bless all of you parents as you are on your journey with your child. God bless you “kids” as you grow up.

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