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Thread: Gastroschisis Update

  1. #19

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    Default Another Update

    Hey everyone,

    Finally got the internet back, so I can get on here and post an update!

    It's been over a week since I went to hospital, thinking that bub was coming and no baby yet!! I'm on nifepine tablets to stop anything happening. My old OB gave me some more, so I'm happy! Will have to talk to Melbourne on Tuesday and see how long they want me on them. OB gave me a months worth, plus 5 repeats. I could keep this baby in forever if I wanted to!!

    Had to go for a scan at the hospital (an hour away) on Wednesday to check on bub... And here's how the drama unfolded.

    We went to the hospital and we went to book in, and Melbourne hadn't sent a referral so I got told that legally I couldn't have the scan because they don't know what they're scanning for. So, I told them what they're scanning for. (placenta insuffiency, bub wellbeing, blood flow in the placenta, cord, and brain). So, I cried after being told that I couldn't have the scan. They rang Fetal Management in Melbourne, but no-one is there on a Wednesday! And I'm not under one doctor, which they couldn't understand, I told them I'm under a team of doctors. So, without a referral and a contact number for ONE doctor, they can't do it.
    Got them to try and ring my old OB. But he was still on holidays.
    Had a great thought and got them to ring my GP who knows whats going on with my pregnancy because I've seen him a few times and he had to give me steroids the other week.
    Got a referral from him and finally got into the scan!!



    Next day and I went and saw my old OB, at Melbourne's request. And got the scan results. I got a "everything's still the same, fine" from him and he sent me up to the hospital to get a CCG (?) to check on bub (another Melbourne request). Bub's still doing good, according to that. Got a really strong heartbeat! Of course, he made it difficult because it just wouldn't stop moving and the midwife had to sit and hold the disc on my stomach and basically chase bub around for 20 minutes.

    Now, I got a copy of my scan results (As I always do) and there's something I hope someone can help me out with.
    Here's what it says......

    "Umbilical atery Doppler demonstarates good diastolic flow with an S/D ratio of 4.4 which is abnormally increased." then it says it again later adding "This is suggestive of RUGR".

    Can someone help me out?? Do you know what it means??

    Also it says that my amniotic fluid is normal. Hopefully I get the same result in Melbourne next week.

    Thanks again everyone!

    --Charlotte.

  2. #20

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    Oh gosh, what a drama.

    From the little I understand, if the S/D ratio is increased it could indicate intrauterine growth retardation (IUGR) which means the baby is smaller than they would expect. I am assuming they made a spelling mistake on your report. There is a link between IUGR and Gastroschisis so they would be expecting to see this. It's not really good enough though that they wrote that on your report and didn't take the time to explain it. Could you go to your GP and ask him to talk you through it for greater clarity?

  3. #21

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    I know that bub is small. At Melbourne last time he/she was exactly 3 weeks behind, and this scan says he's 2 weeks and 6 days behind. So, I'm not worried.
    But, I've been told that everything that they use to measure him is compromised anyway. Bub's head is a funny shape (most likely from being in breech and having low fluid) and they measure the abdomen which is small than normal because some of the gut is out.
    I've got an appointment in Melbourne on Tuesday, so I'll see what they say.

    Thanks!

  4. #22

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    Back from Melbourne again!!

    Things looking good, bub still behind but now less than 3 weeks behind. In fact, the leg measured at just over 2 weeks behind. So, maybe bub is bigger than we think.
    The bowel is a bit more dialated this time (10mm 2 weeks ago, and 12mm now). But we got told that its nothing to worry about.
    I asked about the C/S and got told that its very unlikely that I'll need one...even with all the complications. But, here's where the OB contradicted herself... I asked about a C/S and she said that likelyhood of that happening was 'very unlikey'. Later on I mentioned that the baby was in breech and is there the option of turning the baby? I got told no.
    I can't deliver a breech baby, but they won't turn it??? How does that work?? I didn't really think about what she'd said til we were on the way home.
    I asked about consent forms. I know that when I booked in to have my baby at the local maternity hosp (an hour away), I had to sign all the consent forms for labour...to consent to a C/S, the use of forceps, etc. But, I got told (and I wasn't very happy) that ''by choosing to have your baby at the Royal Women's, you've given your consent".
    My argument was that I didn't "choose" to have my baby there, I was sent there with no other option. I got told that that was irrelevant.
    I'm also not very happy that it doesn't appear that I'll have to sign any consent forms for bub. They can just do whatever they want to him/her.

    On the good side--we got lots of answers, and got told that bub is looking good for staying inside my tummy for another 4 weeks!! Yay!!
    And bub weighs 2 pound 2. I'm happy about that!
    Placenta still going, hasn't gotten any worse.
    Fluid is good, I think it may be a bit low still, but its OK.
    Got told to have an amnio again, but rejected it quickly. Again, its their argument that THEY want to know what they're dealing with and what they need to prepare for.

    Had a tour of the Children's Neonatal Unit.
    No where near as scary as I thought it would be. We were about to look at a couple of babies and see how Bub will be hooked up to drips, feeding tubes, etc.
    They had no Gastroschisis babies in tho..

    Alls good!!

    -Charlotte.

  5. #23

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    Hi Charlotte

    Good to hear you sounding positive, and that you got some answers. Have you looked at the spinning babies website? They have info on how to get a breech bub to turn upside down. I know some of the other people here have had success in doing lots of half handstands (your head down, bum up) to get bub to move.

    I went through the women's and did not have to sign any consent forms. You do have the right to refuse procedures. You have the right to ask for more information if their explanations don't make sense, or you don't agree with any procedure they want to perform. They are supposed to ask for verbal consent for anything they want to do to you or bub.

    That's great you got to see the NNU, it won't be as scary with preparation.

    take care

  6. #24

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    The spinning babies website is an excellent resource, but there is still a chance bub will turn on his/her own so you can go for a vaginal birth. Vaginal breech birth is always an option too if you don't consent to an caesarean but in general doctors prefer breech babies to be delivered by caesarean so they will likely not support you if you chose to go down that route. Also with your baby being slightly smaller it increases the risk of a breech vaginal birth which no doubt your doctor will explain if you ask to go through the risks. However as with any medical treatment the final decision will always rest with you.

    I'm so glad you are getting more answers now. Keep asking the questions and if you are unsure, ask again. Part of a doctors job is to gain informed consent before any procedure so they must therefore give you all the information that you ask for.

    When boytwin was in NICU there was a gastroschicis bub brought in straight from surgery, and his mum was telling me that he had not yet fed, and the doctors did not want him fed just yet. They were however begging her to express for him because she was planning on formula feeding and they all thought this was a bad idea for his delicate bowel. I don't know if he had any other issues though. I know you mentioned in another thread about your plans to breastfeed, have the doctors spoken to you about how soon bub will likely be able to ingest milk?

  7. #25

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    The Paed told us that bub won't be able to feed for about 2 weeks. They have to drain the stomach and bowels, which we've been told will be a green colour or something like that. When it becomes basically clear, we can start to feed bub about 1ml every couple of hours and gradually increase the feeds until they're happy with the amount bub is drinking and then we can go home. Of course, bub will be fed via tube for the first while, and then I guess we'll have to train him/her to feed from the boob.
    Hopefully we won't be there too long. The closer we get to the due date (January 20), the better. I've been told, tho, that they don't really want me to get past 36 weeks because it increases the chance of stillbirth.

    I've come to terms with needing a C/S, I'm fine with that now. But, of course I'd prefer a vag birth.

    Will check out the spinning babies website later on, I'd be very interested to see if bub will turn. But it would be weird for him/her to be in a different position. I'm so used to how it sits. The head is always to the right of my belly button. :-)

    --Charlotte.

  8. #26

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    Another update!!

    Sorry its taken so long! On monday morning I woke up with stomach pains and took notice of them for about 2 hours. They were coming basically 5 minutes apart, but with no tightenings. I rang my midwife and she checked me out cause they were really starting to hurt!! She told me to go Melbourne and she rang them to tell them I was coming. But, for some reason, they decided that they were too busy to check me out and said that I'd have to wait til Tuesday afternoon for my normal appointment. So, what I had to do, is go to my old OB (an hour away) and get him to say that there was nothing the locals could do and then transfer me to Melbourne.
    (The hospital an hour away can only take healthy babies. And nothing under 34 weeks)
    In the end, thats what happened. But, with all the pains they didn't want to risk me driving down there. So, I was ambulanced to the airstrip, and then flown to Essendon and then ambulanced to the Womens. DP had to drive down, and didn't arrive for another 4 hours.
    All Melbourne did was give me a CTG for a couple hours, did a spectrum (?, the metal thing) test and swabbed my cervix- which was still closed, but bleeding. They thought it was either the start of labour, or it could have been from having an internal back locally.
    The test came back negative saying that I wouldn't go into labour for at least 6 days. Which, so far, is true. :-) plus some more steroids.
    I had to stay in over night and have my normal appointment the next afternoon. Everything is still OK with bub but they want to keep a close eye on me.
    Which means, no going back up home. They don't want me 500kms away. So, I'm stuck in Melbourne until bubby arrives.
    Tuesdays will be OB and ultrasound.
    Fridays will be CTG and doppler scan to check the placenta.
    Once the placenta worsens, even a little bit bub will be delivered.

    I spoke to the Paed (David from the Childrens, he's really good), and he thought that bub would be delivered within a week. Well, a week is now and no sign of bub.
    The OB has seen situations like this go on for over a month.

    I'm so gutted that I can't go home. I'm 32 and a half weeks, and I have no idea when this baby is coming. Its so frustrating!
    Bub is healthy enough to come now, but they want to keep him/her inside for as long as possible. He weighs an estimated 2 pound 10 as of Tuesday.

    I just want this to be over. I never even got any notice to say that I had to stay. I just got told that I couldn't go home.

    Also, the bowel is starting to dialate. It was 10mm, 2 weeks later it was 12, and 2 weeks later it was 16mm. But, the paed said that its not accurate. It happens all the time where they say that the bowel is horrible dialated and stressed and a perfectly un-dialated bowel comes out.

    Sorry if this is all jumbled and doesn't make much sense!!

    Anyway, I'll try and update when I can.

    Thanks for all your support.

    --Charlotte.

  9. #27

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    (((hugs))) it sucks that you are stuck so far from home. It's all very well knowing it is for the best, but that doesn't make a hard (and I'm guessing very boring) period of bed rest any easier. Have you any friends in Melbourne who can visit to keep you company, or is your partner able to be with you?

  10. #28

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    Stayed with his grandparents in Werribee, but we're currently spending the weekend in Rosebud, and then back to Werribee.
    Werribee is incredibly boring.
    Rosebud is cool, but it hasn't stopped raining since we've been here!!

    I don't know anyone in Melbourne, so its awesome having DP with me.
    I hope to get some answers on Tuesday as to when bub is coming.

  11. #29

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    I finally got some answers!!

    Had an appointment today, was meant to be just a CTG, wellbeing scan, and OB.

    CTG went fine, scan took ages because bub was being difficult (as usual!), and then after waiting for over an hour for the OB we finally got what we were looking for.

    Unfortunatly, it didn't happen as gracefully as we'd hoped. We walked in to the OB's office and she basically bombarded us...

    "So, you've had the scan, I've looked at the results, the baby is still doing well and I'll just get you to sign these consent forms for a C Section at the end of next week some time... Just come over here and I'll take your blood pressure."

    .......um...... ok....

    So, basically the placenta just isn't doing what its supposed to and its worsening. Got a CTG on Friday and a growth scan on Tuesday and then delivering bub either Thursday or Friday. I have to admit that I'm starting to get worried.

    Signed all the forms and just waiting on a date.
    Managed to sneak home (500kms) for a couple days to sort ourselves out, and then its back to Melbourne for a couple days and then have a baby!!

    By next thursday I'll be 34 weeks.

    Will keep you updated.

    --Charlotte.

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    Oh wow Good luck with it all.

    It may seem overwhelming and they havent handled everything in the best way communucation wise and explanation BUT you are both in great hands.

  13. #31

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    Good luck with it all, hope bubby gets over the gastroschisis op quickly.

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    How exciting that you have a date to meet your bubba. I hope all goes well and you are holding your precious child soon xx

  15. #33

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    Best of luck charlotte!! Keep us posted...

  16. #34

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    I'll make sure I try to keep you guys updated. I think I'm ready now.... Not really sure how to fully prepare myself for it, but I've done lots of deep breathing and "everythings gonna be OK"-ing. lolz

    I rang the Womens a while ago and asked if I'd been booked in yet, and they saw that I needed a C/S but no time had been booked yet so I have to ring back in the morning. Mildly frustrating.

    It was good talking to the paed surgeons, but it was kinda everything we knew.
    It's nearly 100% likely that they're going to use a silo to ease the gut back in over 4-5 days. Because bubby is so small it will put too much stress on him/her to put it all back in at once, also they're going to take over all of bubs breathing by using a ventilator. Not sure for how long, tho.

    I'm getting pretty excited, I have to admit. Its finally going to be moving onto the next chapter. I'm so sick of the "complicated pregnancy" chapter. I'm so ready to start the "getting bubby better" chapter of our lives.
    And for some reason over the last month its been killing me that I don't know if its a boy or girl. I call it "him" all the time, but I been having dreams that its a girl.
    Its driving me mad!! But, I'm not going to find out now via ultrasound.

    Anyway, will let you know when the C/S is and how the growth scan on Tuesday goes.
    Then, hopefully next weekend, I'll be able to find the internet and let you know how bub is going after being born.

    --Charlotte.

  17. #35

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    Hi charlotte,

    I have been following your thread for a while but didnt want to post anything.
    I had a daughter in July with Gastroschisis but i had her over in perth. I was induced at 35+5 because of non reactive CTG and a non reactive ultrasound and her belly had stopped growing at 30 weeks, and had a successful vaginal birth, turns out she was just sleeping and become reactive again a couple of hours later. Birth was uncomplicated and she was perfect the day she come out weighing 5 pound 3 ounces. Surgeon was little to my knowledge a fairly new surgeon to PMH and decided to put her belly straight back in. The next day she pretty much rejected it and her sats and bp and heartrate shot up.. they did emergency surgery to remove her bowel into a silo. a few days later they noticed part of her bowel had died to they released it loosley into a saline bag over the next week and a bit to try and save some of the bowel. when she was 10 days old they operated on her to remove the dead bowel and ended up taking 50cm which would have ment she could have lived a normal life. They put it back in a silo and carefully reduced it over about 8 days. The day before her final closure operation she was diagnosed with RSV bronchitis-(a viral infection like a cold) and surgery was put off. She started to get really bad with her breathing so she was back on a ventilator. anyways cut a long story short she passed away at 7 weeks old due to over ventilation had punctured her lungs one to many times.

    Anyway My advice to you is to keep that baby in as long as possible. Ella was nearly 36 weeks but she would have lived if she wasnt that slightest bit premeture. It is good to hear that they will be doing silo.. it is the best way. You are in good hands in melbourne. If Ella was breast fed she would have been able to build up the immunity to fight the RSV and again would have lived. I know of about 4 babys, all who were in and out in between 8 days and 3 weeks.. some do have to stay if they have bowel complications like Ella did.

    I wish you and your baby the best.. hang in there!

  18. #36

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    Thanks for sharing your story Shan, and I'm so sorry that Ella died. I'm sorry but we cannot have links to other forums so I have had to remove your linki to your birth story. We have a section on this forum for Birth Stories and Your Stories of Loss if you would like to share your story here.

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