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  1. #1
    Join Date
    Dec 2008
    Posts
    12

    Default Pregnant: Baby has Gastroschisis

    Hey everyone my name is Rachel and I will be 32 weeks this thursday Im excited and nervous and feeling quite blessed...But everyday I wake to the harsh reality that my baby has gastroschisis its when his intestines protrude out of his abdominal walls, it kills me because noone knows what causes this except that all of the fetus's chromosomes havent placed themselves properly together leaving this hole exposed in his lil belly.

    When I first found out I was devasted and heart broken I felt like it was my fault I even asked wha did i do, what could i do to help him but all of their answers left me in the dark, It wasnt nothing i did and there isnt anything i can do to help him, except continuing being healthy an going to my appointments. When my babys born he will be taken directly to the nicu...I will not even get a chance to hold my precious lil boy, hes my first and it kills me because I love him so much I long for that moment where I can hold him and just smell him and coo with him, I hate it when I hear of mothers that dont even appreciate their newborns, I have to wait 2-6 months before I even get a chance to take my lil boy home, sometimes i feel like its not fair, i cry all the time to myself just because I feel like I will be missing out on his first glance into this world.

    It kills me even more to know that he wont even be able to eat properly until well after his surgery, yes into his first day in this world he will be operated on to correct his gastroschisis and than a second surgery is in due to correct the placement of his intestines, I want to breastfeed so we're going to store my milk til hes able to digest and make bowel movements which can take well over a month.

    My message is not only to educate, but perhaps even hear from moms of which are in my same predicament and know how I feel. Also to let moms especially moms of newborns to appreciate their lil bundle of joy and those that are pregnant take advantage of that chance you get to hold your baby when he or she is first born, no matter how tired or weary you are look into your babys eyes and allow him or her to know that you are thankful for them being in your life.

  2. #2
    Join Date
    Sep 2008
    Posts
    102

    Default

    Oh honey I am so sorry that you are going through this I can't even imagine. Don't worry about not getting to hold your baby right away you will be able to bond in time. I had a really hard 32 hr labor that ended in a c-section and didn't get to hold my baby or really even see her for hours it was hard and I was scared that she wouldn't be able to bond with me once I did hold her. I was soooo wrong she knew who I was she had heard my voice for nine months. she's almost a year old now and can't bear to be away from me.

    You and your lil guy will be in my prayers. Good luck and enjoy the rest of your pregnancy. Try not to worry god will take care of you and your lil one!

  3. #3
    Join Date
    Dec 2008
    Posts
    12

    Default

    Thank You so much for the reply I really do appreciate it and I cant wait to get to the stage your at now in your mothering where your lil one cant get enough of you! Last night me and my fiancee were talking about how much I worry about him not bonding with me due to his hopsital stays length but than I commented on how I'll be able to recover for the rest of his life! lol I dont think I would ever want him away from me, just as any mother wouldnt, Im just really excited about being a mommy I'll just keep on being strong and holding on to what I have.


    We had placed his nursery in our room so now every morning when I wake up I look to my left and I see this beautiful set up for my son, we even put up the crib and his sheets and everything It just brightens my day to one day know that when I do give birth and he does come home he'll be the one to fill that crib with love, laughter, and just pure joy!

  4. #4
    Join Date
    Aug 2008
    Posts
    11

    Default

    I know how you feel, my first child was born with gastrochisis as well. I found out when I was 14 weeks along. I delivered and he was rushed away for surgery. They could not replace all of his intestines at one time so they made a "silo" and gradual pushed the bowel back in place. Due to where the intestine was twisted he also had his ileo-cecal valve removed and had an ileostomy for a little while, which was reversed. Now he is 3 years old and just as happy and normal as any other. Hang in there its a tough road, but its worth it. Good thinking storing your breastmilk, thats what I did and I truely believe it played a huge role in his quick recover. If you ever need to talk, feel free.

  5. #5
    Join Date
    Jan 2009
    Posts
    206

    Default

    As a parent of a child with special needs, I know its emotional hard. I suggest going to youtube and viewing the video "Welcome to Holland" it helps to understand that although the road is hard and not planned, there is still alot to enjoy. Also call early intervention now for a referral. Have therapy set up right away so he wont be behind on his development! Good Luck!
    Ginger
    Proud mommy to Corbin:7, autism/epilepsy; Kayla:5, my bff; and Collin: 9/10/09. M.Ed. Early Childhood. Wife to my OT hubby. Breastfeeding, babywearin, home cookin SAHM.

  6. #6
    Join Date
    Apr 2009
    Posts
    4

    Smile Never give up

    Hello-
    My name is Leaha and I am a 27 year old mother of 3. I can not say that I have gone through this myself, but when I was 13 my step-mother gave birth to my baby sister who was born with gastroschisis. She was born full term and at a normal weight. I am writting you to give you some hope. As with any severe condition Ashley spent lots of time in the hospital, but she is now a well thrivng 14 year old girl. She has a hard time with the scars because kids don't understand. The plus side is she doesn't remember any of it. She plays softball, volleyball and had been a cheerleader, she is very hard to keep up with. The only thing that was hard for her was her speech, because she was fed through a g-tube for a long time, and had to learn to use her mouth. She walked and crawled a a normal age. I spent alot of time with her taking care of her so i am well aware of what it takes. At the end of the day you don't think about all that is wrong, you think about this wonderful child that beat the odds.I'm not saying that all cases are this way, but what I am saying is there is always a silver lining and never give up.

  7. #7

    Unhappy HI

    Hi

    i understand what your going through.... Just yesterday i had my first ultrasound and found out my baby had gastroschisis...im very sad and reading your feelings made me want to be strong and keep on forward.... Im 12 weeks and 6 days ...... Hopefully you feel better but yes its hard to know your little love is having dificulties...

  8. #8
    Join Date
    Feb 2009
    Posts
    5

    Default

    I too just got a call from my Dr. that told me that my baby may have gastroschisis I have to go for another sonogram to confirm.. I am scared... We did invitro because I have NF-1 and didn't want to pass the genentic disorder on. I wonder if them taking out a cell to test for the disorder has anything to do with this. I am terrified. I told my husband and he is sweet he said we will get through this.... Just don't even know where to begin.

  9. #9
    Join Date
    Jul 2009
    Posts
    2

    Default Gastroschisis/ I need answers please

    Hi, my name is Sabrina iam 19 and married I have a 1 and half year old son named Noah who's healthly and handsome, but my husband and I found out I am pregeant again and iam 30 weeks today and we are having another boy sad but happy too I wanted a girl but am glad my son will have another boy to play with, my husband and I just figured we would try for a girl later on in like another 2 or 3 years from now, but then we got the bad news our new son to be has Gastroschisis and I just found out last week my private doctor knew and never told me until I went to my second ultersound somewhere else at Dr.Hills office they told me the bad news my doctor I dont know really if he knew about it he did ultersounds on me so I dont know if he didnt see it which scares me to know hes a doctor and didnt know about it or he just wasnt going to tell me. I very angry at him. I dont know what to say to him I have doctors app. tomorrow. I cryed and cryed and cryed and am still crying, I have seen on tv and heard about it but never knew anybody with it or never thought in a million years something like this could happen to me. I am angry and sad, I just dont know what to do or if I can handle see my baby like that. I dont know if I get to hold him or see him right after hes born or will be on a breathing machine nobody will give me answers I am lost and need help please if you can answer any of my questions I would be so grateful.
    THANK YOU,
    Sabrina

  10. #10
    Join Date
    Jul 2009
    Posts
    2

    Default

    hi everyone... i am not a mother to a baby with gastroschisis, but i am 22 and was born with it. i was born full term and they missed it on the ultrasounds so i was born and the dr and my parents were completely shocked. my mom saw me for a minute before i was literaly seran wrapped and shipped to yale to have surgery.
    i had 2 surgeries and a feeding tube. my dad said he was scared to see me like that being their first born and everything. i have seen pictures and i had tubes out of every limb. and i was all taped up. BUT i promise it looks so much worse than it is.
    growing up i had a hard time with being constipated. but that has gone away. i can't eat alot in one sitting but i really am healthy. my main concern right now is if i can have kids. that is due to the scar tissue from my surgery. but moms it will be ok. with todays technology the surgeries are better, the scars are smaller and with detection before birth the planning helps. if you have any questions on what your baby may go through feel free to ask

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