November 2014 Moms

US today, Panorama results=good news and bad news (2nd UPDATE in OP)

amtay825amtay825 member
edited June 2014 in November 2014 Moms

Well I'll start with the good news. First off, It's a BOY! :):):) DH and DS are over the moon excited, I am as well as it just feels right. I couldn't see myself with a girl before, even though in the beginning I was really hoping for one. So we're happy to welcome another boy :) More good news, some of you may remember that I had the cerclage placed, and there my specialist told me that I had an increased risk for downs. Fast forward...another appnt they told me I had a 1:8 chance of having a baby with downs. So we did the Panorama. Those results came back great, LOW RISK. Praise the Lord! More good news, my cervix looks beautiful! Its measuring at 4.8 which is just a miracle for me!! I'm so happy with those results :)

Now for the bad news....I knew there was something wrong with the ultrasound tech spent a lot of time looking at the baby's heart. It felt like an eternity and she was very quiet. I wanted to ask, but I was terrified to so I didn't. I knew that it would be even worse if I asked and she said, the dr will have to talk to you or something. So I didn't say a word until she left I told DH something isn't right. When she was done, she told us the dr would come in and have a look at the baby "since he hasn't had time yet". I knew that was code for there was something wrong. Turns out, baby boy has a diaphragmatic hernia; which means his diaphragm didn't close when developing and therefore he has a hole which allowed his intestines and possibly stomach and liver to move up to his lung cavity. This causes his lungs to not develop properly, therefore causing breathing issues at birth. We do not know the severity, but he said it looks like its just the intestines that moved up which would be the best possible scenario of this condition. The intestines are soft and the lung is hard so it can actually push them back down and still develop somewhat normal. Also, its just on one side, so the other lung is not affected. So now, we will be seeing a genetic counselor hopefully next week; then we'll have a fetal echocardiogram and a fetal MRI. The MRI will determine the severity of the condition and what to expect. It can be life-threatening in severe cases. Regardless, baby will have to have surgery at birth to move digestive organs back where they should be and to repair the diaphragm. If all goes well there and the lungs developed ok, he could go on to live a normal life with little or even no lasting affects. If not, then we could need additional surgeries and we could be looking at developmental disabilities, a lifetime of breathing problems as well as digestive problems.

SO, that leaves us with something else to pray about and trust God for. We're trying not to let the diagnosis ruin this special day of learning we're having a boy, but at the same times its hard knowing that something serious is wrong with your baby. DS and I had a good cry session and prayer a few minutes ago and I think that helped both of us :)

 UPDATE: Well I had the fetal MRI on Friday, and another appnt with my MFM today. The MRI results aren't back yet, but we did another ultrasound which confirmed the diagnose, so its a definite. We will get the results on Wednesday, when we meet with the genetic counselor. The dr today could see his stomach and intestines in the lung cavity. It appears the liver is below the diaphragm, which would be best case scenario; but he can't give me 100% on that until the MRI results come back as its hard to see on an ultrasound. So, in the next month we have more tests coming up: an amnio in 2 weeks, a fetal echo cardiogram to be determined when the results come back, then meet with the surgeon. My regular OB will not be delivering me now, either my MFM will or the dr he recommends to do the C-section. Something cool that happened at the MRI: I have been feeling the baby often if I lay on my back; and for the MRI I had to lay on my back for over an hour. About 20 mins into I felt like really strong kicks like someone punching on a punching bag. I thought it was my imagination because I didn't think I should feel it that strong yet. But at the end of it, I asked the radiologist if I could look at the images by any chance and he said that he has one he thinks I would love. He showed me a video of the baby kicking my belly like a punching bag! It looked like he was trying to do the 'riding a bike' excerise really fast, if that makes sense. I thought it was so cool to actually see him doing what I was thinking he was doing; it was so cool!

2nd update: Well we met with the genetic counselor today. Basically, we don't know a whole lot more than we went in. We do have a definite diagnosis based on another ultrasound and the MRI. However, because the baby was moving so much they can't really tell what exactly has moved into the chest cavity. Their best guess is: the left side of his diaphragm is underdeveloped. Parts of his spleen and intestines, and possibly his stomach (undetectable) and possibly the left lobe of the liver are in the chest cavity. Truly a best guess as he was moving too much to get a definite. Our next step: meet with surgeons and tour the hospital. possibly switch OBs. have an amnio (I may choose to wait until 34 weeks though). So much info, so overwhelming, so much to process. Our heads are spinning. If any of you believe in the power of prayer (I do!) I ask you to please pray for our baby's health. Please pray his lungs will develop normally and that we will know best what to do before delivery as well as after delivery. Thank you for your support and prayers.

                            10/16/04 ~ lost our first baby boy at 20 weeks due to IC

                                              3/05 ~ another loss at 12 weeks

         2/14/06 ~ Our sweet valentine miracle was born after a nightmarish 8 months!

                    Surprise Baby Boy, born sleeping at 31 weeks on 9/21/14

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Re: US today, Panorama results=good news and bad news (2nd UPDATE in OP)

  • so sorry to hear about this stressor. Praying for good news and low severity. Congrats on the baby boy!
    Lilypie Fourth Birthday tickers Lilypie First Birthday tickers
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  • Congratulations on your baby boy and no Downs! I'm sorry your good news is tempered by some unexpected bad news. Thankfully, they caught the condition early and you and the doctors can be prepared to handle it at birth. Hopefully it is as minor a problem as possible. I would definitely take the time to look into finding doctors who specialize in treating this condition and get a good support team in place. You may want to switch hospitals if there is a different one with expertise with this condition. Best of luck and congrats on team blue!
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  • going to have you baby and family in my prayers. also going to put you in our prayer group at church, for a safe delivery and for the surgeon at birth for soft precise movements to fix lil man to have a happy healthy life.

    congrats on him and all the other good news. Will be thinking and paying for y'all
  • mb314mb314 member
    Congrats on your baby boy! 

    But I'm sorry to hear about the heart condition.  I'm glad they detected it, and I hope that the condition turns out to be not that severe.  T & P!

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  • First off congratulations on your boy! Secondly, I am very sorry you are having to deal with this. I will keep you in my T&Ps that it is the least severe diaphragmatic hernia a baby can have. 

    I agree with @hiketheworld - I'm not sure where you're located, but I would definitely look into other hospitals (in and maybe out of your city depending on where you are) that have teams that are able to take care of babies with CDH (not all hospitals/NICUs provide ECMO in case he needs it. I'm sure you're doctors will talk to you more about it as you learn more about the severity. I'll definitely be thinking about you and keeping my FX for the best case scenario!
    *TW*
    Me:35 DH:35
    Dx: PCOS
    DS1 born 11/2014
    DS2 born 11/2018
    3 previous losses
    Rainbow baby due 12/2021 - Team Green

  • T&Ps for you in the coming weeks!
  • Congratulations on your baby boy!

    I'll be keeping you in my T&Ps as you learn more about what is going on.
    *********

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  • Welcome to team blue! Fingers and toes crossed for you that all turns out well!
    BabyFruit Ticker
  • Congrats on Team Blue, but I am so sorry you are dealing with this news. I hope that the hernia is on the least severe end of the spectrum and everything turns out alright with your little one!
    ~~Signature~~
    Me: 36, DH: 38, Together since: 2006, Married: 9/2011 
    **TW Living Child**

    BFP 9/19/20 - EDD - 6/1/21

    BFP 2/2014 - DS - 10/2014


  • AbbeyHAbbeyH member
    FX for you and your little boy!!
  • Congrats on the baby boy! I'm sure he will be beautiful!!! :) I hope you don't mind but I want to share a happy story of my little cousin that has been through the same thing and today she is a super happy 3.5 year old.


    Me 32 and DH 40

    Fur-baby named Bella

    1 MC Nov. 2013

    DD born Nov. 2, 2014

    Little 2 EDD Oct. 1 





  • Congrats for team blue! Positive thoughts on the not so good stuff.




                                  
  • Congrats on finding out you are having a boy and on all the other great news you got today!

    You are in my T&Ps for everything else. Good luck at your next appointment!
  • Congrats on your good news. Hoping the best for you w/ the heart condition. 

    N14 Nov. Siggy: CELEBRATION!

    image image
    TTC since 2011
    Aug. - Sept. 2013 - dIUIs = BFNs
    January 2014 - IVF = 3 freezer babies
    March 2014 - FET of AA and AB blast = BFP! Twins! 
    Nov. 7, 2014 - Wilhelmina "Willa" Suzanne (4lb 14oz) and Ari Jose (6lb 4oz) were born via CS
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    Lilypie Premature Baby tickers
  • Congrats to boy and your cervix. Sorry to hear about the bad news part T&Ps for you and your family.
  • KMW08KMW08 member
    Congrats on a boy!!!!! 

    I'm sorry to hear about the hernia problem. FX that it isn't severe. Ts and Ps being sent your way.

    BFP#4 3/17/14 - rainbow Baby BOY arrived 11/10/14 !!

    DX: Uterine Septum - Resection 9/5/13 || MTHFR Hetero A1298C || My Chart

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  • Congrats on joining team blue! Fx all everything turns out okay.
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  • rox825rox825 member
    Congrats on team blue!  I'm sorry about the scary news, I hope that you end up in a best case scenario and that if the baby needs surgery, it goes smoothly and he is on the mend and home with you ASAP after birth.

    Baby Birthday Ticker Ticker

    TTC since Sept 2011, Unexplained IF
    Oct 12 - Jan 14: 3 clomid/TI cycles, 2 hysteroscopies, 2 IUIs, 1 BFP (MMC @ 12w), 2 more IUIs
    Feb 14: Gonal-f + IUI #5 = BFP! (EDD 11/4/14)
    Baby boy arrived 11/13/14!

  • BTW I sent you a PM with a note from my cousin who had some suggestions. Here is a pic of my baby cousin Bentlee. She was born in Dec of 2011 with CDH.  


    Me 32 and DH 40

    Fur-baby named Bella

    1 MC Nov. 2013

    DD born Nov. 2, 2014

    Little 2 EDD Oct. 1 





  • Congrats on Team Blue!!        FX everything goes ok with the other issue,  thats good they found it now though and they can be proactive about it.   

    Nov. '14 January Siggy : Work Sucks!

     

    Me 32-DH 38

    Married July 14, 2007  ----- TTC # 1 October 1, 2013
    BFP   March 7, 2014  -----  EDD November 17, 2014 ---- Baby boy born November 16, 2014

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  • Congrats on your baby boy! Thoughts and prayers to you all.
  • Congrats on a beautiful baby boy. I'm thinking of you and your family for the best possible results and outcome for your son.
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  • Congrats on team blue! A friend of mine's son has CDH. His was a severe case and he was given less than a 5% chance of survival. He is now 2 1/2, and although a bit behind others his age, he is an incredible boy! A total joy!

    I'll try to find his blog for you.
    image

    BabyFruit Ticker
  • Thought and prayers with your family and sweet little boy.
  • Thoughts and prayers as you learn more.


    Baby Birthday Ticker Ticker
  • Congrats on your baby boy!  Prayers for you and your little one that his lungs will develop normally and that it will be a quick and easy fix after birth!

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  • Congrats on your little boy! I'm so sorry about the diagnosis & I'm praying for the best case scenario for him!
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  • Congrats on the boy! Thinking of you guys.
  • Congrats on your baby boy! Thoughts n prayers it all works out ok!
  • aa98aa98 member
    Congratulations on your baby boy!!!  T & P's for the best possible outcome!
    BabyFruit Ticker

    Our first!!!



  • Congrats on the wonderful news of another baby boy!!!

    You will be in my thoughts and prayers as you continue on with the genetic counsellor! Fingers crossed for the best possible scenario!
  • Congrats on your baby boy and T&Ps for your little one. Just keep thinking and telling yourself that he will be a total badass and kick this issue in the butt!
  • Congrats on team blue!! I will keep LO, you and your family in my prayers.
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  • Congrats on your son!

    And yes - may one surgery do the trick.
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    Lilypie - (C6hS)

  • I will keep you in my prayers.
    congrats on the boy!

    Anniversary

  • dr_prdr_pr member
    That is a very stressful thing to hear at an u/s.  I'm so sorry you have to go through the worry, and FX it all turns out great.

    And congratulations on Team Blue, and low risk for Down's!

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  • Awesome news about team blue! Thinking about you, your family and LO as your doctors develop a plan for taking care of all his medical needs.


    BabyFruit Ticker
  • I'm glad they detected it early so that you have time to research and, like PPs suggested, find another doctor who specializes in it. Good luck to you.
    BFP 2.22.14 | EDD 11.2.14 | DS 11.7.14
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  • Congrats on your good news, praying that all goes well for your beautiful baby boy.
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