I'm a lurker, so I hope you don't mind me responding. MFM thought DS1 was going to have this. Has anyone talked to you about what will happen when the baby is born? While we were waiting for the official diagnosis I found it helpful to know what was going to happen when he arrived. It calmed a lot of my fears, because I knew there was a plan to fix it. I'm sorry your going through this. Hope it turns to be nothing.
My mom was with me, so the doctor was carefully choosing his words. I didn't get much guidance. But, I'm glad he didn't reveal too much in front of my mother! I've done a little reading, but I will only have my husband with me when I go back in 2 weeks.
Why would you not want your mother to know?
I honestly fear that she might leave her job and home in another state, and hunker down "to be with me" to the point that she would have nothing to which she could return. That sounds extreme, but that's my mom.
This must be so terrifying for you. FX everything rights itself in the next 3 days and all they see on the ultrasound in two weeks is a healthy happy baby.
Praying. I have a lady on my July board who's son was born with this, if you need any info she's fabulous. @ramy3 is also friendly with her and she is a wealth of knowledge.
GutsyMama reporting for duty! Hope you don't mind me boardcrashing, mer & ramy pointed me in your direction.
My son was born with gastroschisis, which is a very similar condition. They missed it on our A/S, so we didn't have a prenatal diagnosis and I can't help you a whole lot there, but I know how scary it is to face the prospect of a very serious health issue and all the uncertainties that come along with it.
My kid is pretty much the coolest kid ever. We have had a long journey. We are still journeying, to be honest. Lucas had a complicated case and ended up losing most of his small intestine, so nutrition and growth are an uphill climb. But I don't think I'm being presumptuous when I say that all of J13 can vouch for the fact that even with all he's gone through, my kid is really, really awesome. I imagine this is even harder with a prenatal diagnosis before you've even been able to meet your baby, but try not to let the omphalocele loom larger in your head and heart than your amazing beautiful perfect child!
I know neonatal surgery is a terrifying thought, but sometimes these things are fixed easily. Having a lot out isn't necessarily the worst case scenario - sometimes that allows the organs to still form properly, just in the wrong spot. My son's was actually so complicated precisely because the hole in his abdomen was so small, and it didn't allow the intestine to form properly. Like with us, sometimes it's more complicated, and it takes a little while longer to get things sorted out - but it's still very manageable. Try not to do too much googling, and try not to get ahead of yourself before you have a more certain idea of what you're facing.
Feel free to PM me any time, or come track me down on July '13. Hugs, mama! You will get through this.
>:D< >:D< >:D<
FKA mimi4347: diaper rash magician and unofficial expert on excrement
This kid may not have a lot of bowel, but he has plenty of guts! DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome. 131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
This is SO insane! I am so sorry for the upsetting news, I'm praying for your little baby. Take care of yourself and try not stress (easier said than done, I know). God Bless xx
This May or may not be helpful, but my little sister was born with a diaphragmatic hernia in the early 80's. Basically many of her organs were in the wrong spot or seeping through a hole in her diaphragm. They had no idea she had this condition until after birth, but they were able to take charge and she is perfectly normal now.
You and your little one are in my thoughts.
bfp #1 10/15/2009 m/c 11/4/09 10 weeks Lily you are not forgotten bfp #2 4/5/2010 CP, m/c 4/12/10 5 weeks Baby Lo Diagnosed PCOS 10/10 RX 1500 mg Metformin/day bfp#3 4/5/2011 Missed m/c discovered 5/24/2011 (10w 5d) baby Asher stopped growing at 6 weeks I know he is playing with his siblings in heaven right now...
rx'd factor II gene mutation 7/11 prescribed 5000 units Heparin daily rx'd Sjogren's Disease 8/11
bfp #4 9-6-2012 RAINBOW Baby Ky born 5-9-13 bfp #5 8-26-14 RAINBOW #2 Due 5-8-2015
Oh my....I'm so sorry. I know the intestines usually live outside of the fetus' body in the umbilical cord area, and then will go where it's supposed to go, so I am hoping hard for you that all goes well. You are in my thoughts.
Hi jennilarkspur, I'm sorry that you are going through this and pray your baby is well. Have you received any news on your baby?. I had an ultrasound today because of bleeding and they found my baby has this as well. Such a whirlwind of emotions that I don't know what to think. I have another appt tomorrow to figure out our next step is.
I will be thinking of you the next two weeks and beyond. I hope all goes well and you get good news! When I stress I tend to over research and when I read your story I did a little digging and found this story with a happy ending, maybe it will help ease your mind that even if the prognosis is kept throughout this is treatable.
My prayers are with you and your little one. I can't imagine the level of anxiety you must be feeling. I'm hoping for a miracle for you and the strength to hold on through this storm.
@jennilarkspur I am saying prayers for you and @elsiefaye. I'm sure this is so stressful....before having DD I was an RN in the NICU and we actually saw oomphalocele and gastroschesis quite often. I know it can be extremely overwhelming but just try to remember that these neonatal doctors and surgeons are AMAZING. I am always in awe watching them "fix" these babies. It takes some time in the beginning but your babies can go on to lead perfectly normal lives!!
If either of you want to pm me any time with questions, please feel free!
Thanks for all the good thoughts, prayers, kindness, and encouragment! There are certainly FAR FEWER intestines outside of the baby's body now! GOD IS GOOD!!
My OB is definitely pleased, and we are feeling so hopeful!!
I am so sorry you are going through this my prayers are with you.
My nephew was born with an extreme omphalacele (all intestines were in a melon sizes sac outside of his body), a herniated diaghphragm, and his heart is located on the far right side of his chest. When my sister was 20 weeks the drs basically said they didn't know his chance at living because they had never seen those 3 issues together. He had no chromosomal abnormalities (which they were shocked about) and no mental retardation which is another issue that normally comes along wht these abnormalities together. My sister decided to carry to term even though many drs and people advised her to terminate.
My nephew was born and immediately went into surgery where they were able to fix the omphalacele. He stayed in the NICU for 3 weeks (would have been two but his insision became infected). He went back for a seperate surgery a few months later. His heart scans were clear and his cardiologist said his heart was perfect, just located in a different place. Since he was born he had 1 more surgery at age 5 to add a mesh screen to his abdominal wall since everything hadn't closed like it should have.
No he is 9 years old, in 3rd grade, and reading at a 6th grade level. He is smart, and funny, and a perfectly wonderful little boy.
His surgery was 9 years ago when there wasn't as much known about omphalaceles and since then the technology has advanced ages.
Praying for good news for you. It you ever need to chat feel free to PM me.
1st BFP- March 2011. Natural MC @ 8 weeks
2nd BFP- July 2011. Chemical Pregnancy
3rd BFP- Sep 2011. My beautiful son was born May 2012. 4th BFP-August 2014- Due May 12, 2015
Thanks for all the good thoughts, prayers, kindness, and encouragment! There are certainly FAR FEWER intestines outside of the baby's body now! GOD IS GOOD!!
My OB is definitely pleased, and we are feeling so hopeful!!
Re: So maybe not quite right...
IVF #2: April 2014 Antagonist Protocol|12R 11M 10F|Transfer 2|BFP | m/c 5.8.14
U/S shows two beautiful heartbeats at 122!!
Baby A is our stubborn little fighter with a heartrate of 169!
Team BLUE!
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
Me (34) PCOS
DH (36) Poor morphology and motility
TTC since 2011
2013 cycles 1, 2, and 3 on Clomid, all BFN
2013 cycles 4, and 5 IUI with Clomid, both BFN
DH and I took a break for several months
7/15/2014 started Acupuncture
7/26/2014 start Follistim for IVF cycle, ER on 8/8, develop OHSS, ET almost cancelled
8/13/2014 ET proceeds on our wedding anniversary, transfer 2 5DB, 8/23 BFP
EDD 5/1/2015
God Bless
xx
xoxo
You and your little one are in my thoughts.
bfp #1 10/15/2009 m/c 11/4/09 10 weeks Lily you are not forgotten
bfp #2 4/5/2010 CP, m/c 4/12/10 5 weeks Baby Lo
Diagnosed PCOS 10/10 RX 1500 mg Metformin/day
bfp#3 4/5/2011 Missed m/c discovered 5/24/2011 (10w 5d) baby Asher stopped growing at 6 weeks
I know he is playing with his siblings in heaven right now...
rx'd factor II gene mutation 7/11 prescribed 5000 units Heparin daily
rx'd Sjogren's Disease 8/11
bfp #4 9-6-2012 RAINBOW Baby Ky born 5-9-13
bfp #5 8-26-14 RAINBOW #2 Due 5-8-2015
J15 January Siggy Challenge: Pinterest Fails
Married: 12/08/12
BFP: 09/21/14
EDD: 06/04/15
~*~ book nerd forever | Tar Heel '07 ~*~
My BFP Chart
~Mama to two daughters and baby #3 coming soon~
Our rescued fur babies, Harley and Maya
BFP 1/23/14, EDD 10/1/14, M/C 2/13/14 - Forever loved
If either of you want to pm me any time with questions, please feel free!
Good luck to both of you
My OB is definitely pleased, and we are feeling so hopeful!!
My nephew was born with an extreme omphalacele (all intestines were in a melon sizes sac outside of his body), a herniated diaghphragm, and his heart is located on the far right side of his chest. When my sister was 20 weeks the drs basically said they didn't know his chance at living because they had never seen those 3 issues together. He had no chromosomal abnormalities (which they were shocked about) and no mental retardation which is another issue that normally comes along wht these abnormalities together.
My sister decided to carry to term even though many drs and people advised her to terminate.
My nephew was born and immediately went into surgery where they were able to fix the omphalacele. He stayed in the NICU for 3 weeks (would have been two but his insision became infected). He went back for a seperate surgery a few months later. His heart scans were clear and his cardiologist said his heart was perfect, just located in a different place. Since he was born he had 1 more surgery at age 5 to add a mesh screen to his abdominal wall since everything hadn't closed like it should have.
No he is 9 years old, in 3rd grade, and reading at a 6th grade level. He is smart, and funny, and a perfectly wonderful little boy.
His surgery was 9 years ago when there wasn't as much known about omphalaceles and since then the technology has advanced ages.
Praying for good news for you. It you ever need to chat feel free to PM me.
4th BFP-August 2014- Due May 12, 2015
I'm only catching this now, but prayers and good vibes for you and LO!
M/C 5w6d 6.25.14
Hoping for a rainbow!