First time mom-to-be facing gastroschisis and NICU stay

Hello,

My name is Nicole. I'm currently 27 weeks pregnant with my first child. At 18 weeks, my boyfriend and I found out our little one will be born with a birth defect called gastroschisis. Since this diagnosis, we've been trying to learn everything we can to try to prepare ourselves for the journey ahead of us.

I will be induced at 36 weeks, at a nearby hospital, KU Medical Center. I've done all the reading I can to prepare for my son's premature birth, and my boyfriend has read up on gastroschisis, but I would love some information from those of you who have had experience with the neonatal unit and gastroschisis. I have no idea what to expect and am absolutely terrified. If anyone has had experience with KU's neonatal unit, I would love to hear from you.

In addition, I have no idea what to expect when it comes to inducing labor. I've read as much as I can, but there seem to be so many different ways to induce. It's all very overwhelming.

This has been a stressful time for my boyfriend and I thus far, and I would love as much information as I can get. Thank you all in advance. Any help I can get will be very appreciated.

6 Replies

  • In reply to Josie12907:

    Brandi, thank you for sharing your experience with me. We have a friend whose wife was induced at 41 weeks and he said it took five days before their little girl was born, eventually via an emergency c-section. I've done some reading on being induced, but it seems like there are so many different ways it can be done, and it sounds like it doesn't always go quickly. It's worrisome and I don't know what to expect with everything. If you have any more information for me, please don't hesitate to contact me again. Thank you a bunch!
    Nicole
  • In reply to Karri:

    Karri, thank you so much for reaching out to me. I greatly appreciate your words. It's very reassuring to know those girls have recovered and grown to have healthy happy lives. Do you happen to know the severity of their gastroschisis? The doctors have said our little guy's is between small and medium in severity. Which compared to the story of a little boy I learned about, ours is a much better scenario. But still terrifying. Do the girls you know have any diet restrictions? It's good to know despite the condition he should be able to play sports without problems. If you have any more information that could help me, please let me know. I do appreciate it so so much. Thank you again.
    Nicole
  • In reply to deannafei:

    Deanna, thank you so much for your words. I'm absolutely terrified. I have no idea what to expect in our NICU stay. I hope it will be a short stay, but as I'm sure you know, that all depends on his condition and how well he recovers. He will have to have surgery, best case scenario right after birth to repair the gastroschisis. I'm your experience, did they allow you to stay at the hospital with your baby? I don't want to leave mine there alone as silly as it sounds. Thank you again for reading my story. I appreciate it very much.
    Nicole
  • Hi Nicole, thank you for sharing your story. I don't have experience with gastroschisis or induced labor, but I have a daughter who was born at 25 weeks and spent 3 months in the NICU. It is one of the most overwhelming, terrifying experiences any parent can have, but please know that you're not alone. So many of us here at Share have been through similar ordeals. NICU doctors and staff are some of the most heroic people on this planet. And you are already lightyears ahead of where I was in terms of reaching out for support. Please continue to reach out for help whenever you need it, and whatever happens, your strength and hope will carry you through. Please keep us updated. I'll be thinking of you and your family and sending you good wishes.
    Hugs,
    Deanna
  • Hi and welcome to Share. Congratulations on your pregnancy. While this is an exciting time for you and your boyfriend I understand how scary this must all be too given what you've just learned. I am a NICU mom. My twin girls were born at 25 weeks gestation and spent 12 weeks in the NICU. While the NICU is scary and unfamiliar you will find a team of doctors and nurse with a deep compassion for their tiny patients as well as their parents. They are a very special group of people working in the NICU. I didn't have a child born with gastroschisis but I know two young girls who were born with it. Nicole is a sophomore in college now, and Ashley is 12 years old now. Both girls were born early about 35-36 weeks and require surgery within days of birth. They were both followed by their GI surgeon for the first 5 years of life, but didn't have any major complications. Today they are both doing well. As I said Nicole is in college and Ashley is a very active competitive soccer player. Neither have lasting effects from the gastroschisis. I think you're doing all you can at this point. Researching and preparing for your little one's birth. We are here for you to support you through it all. There is a lot of unknown and worry and that is no doubt so very hard for you and your boyfriend.
    Please keep us posted on your progress with your little guy. Sending you lots of well wishes and hugs
    Karri
  • Hello and Welcome. I have not dealt with gastroschisis myself, but I was induced with my second pregnancy. My ob allowed it as I was 3 centimeters dilated and 90% effaced. I got checked in, hooked up with an IV, on the fetal monitor. Then a resident broke my water, which was not painful but just odd. Due to that and pitocin in the IV, contractions got mean pretty quickly, so I asked for my epidural right away. Overall, my water was broken around 7am and my daughter was born at 12:10pm. I hope that is helpful for you. Sending you so much love and strength as you prepare for you baby.
    Brandi
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