CDH- Update — The Bump
April 2018 Moms

CDH- Update

Thank you so much to everyone who has been thinking about us this week.  It was definitely an emotional week for sure and this will probably get a little long.

First, the good part is that I was able to enjoy the nice weather with my family.  My brother did fly in from Jamaica and we all got to spend Christmas day together and a few days after.  We just got home late last night.  I am both happy and sad to be home.  We went to the Hard Rock for dinner on Christmas and I totally forgot that you can still smoke in casinos, so I was the pregnant lady bringing in my 3 year old to the casino lol.  I felt like mom of the year!  But it was non-smoking in the actual restaurant.  You just had to walk through the smoky areas to get there.

My first appointment was on Tuesday morning and that was the fetal MRI.  There was a mix-up with this appt and they didn't have me on the schedule!  I was like oh crap what am I supposed to do?!  I texted Dr. Kays' nurse (which I felt bad about because she was off that week) and she called up there.  They still were confused and wouldn't get it scheduled.  She was insisting it be done that day and they finally tried making the appt but then there was an insurance with my insurance.  They needed to get a "stat" authorization so that insurance would pay for it to be done the same day the test was done since they usually get authorizations in advance.  We were up at the hospital for over 2.5 hours and then they finally got us in!  All the people in the radiology dept were great and I appreciated all their help.  Fortunately, baby girl cooperated and the scan only took about 30-45 min (sometimes it can take up to 2 hours).  I have never had an MRI and was super not a fan.  Especially since I had to lay on my back the whole time and my heartburn was bad and I hadn't eaten!  They didn't tell me anything about the results that day because the radiologist had to review them.

The next appointment that day was the MFM appt.  We ended up being there for 3 hours!  I thought this was going to be the quick appt.  But we kind of did an OB type appt first and then the MFM u/s.  Apparently, this is the office that would be delivering the baby.  They are the only MFM office in 5 counties that actually also delivers the babies.  That appointment went fine. They gave us a lung volume estimation of about 40-50% based on u/s.  This is only based off of measuring the bigger healthier lung and isn't always accurate.  Nothing really new showed up on this u/s, which is good.

The next appointment was the next morning and that was the ECHO.  I never knew there were so many things that could be measured on the heart!  It was a long appt, but at least I got to lay on a comfier hospital bed instead of the typical chairs you have to sit in for an u/s.  They basically measure every artery, vein, etc and listen to each one.  Then we met with the cardiologist to go over the results.  She said that one of the valves on the left side is smaller than normal and could be because of compression from the other organs, but is something that we need to watch and have remeasured at a later date.  There is also a small hole in part of the heart, but even healthy babies can have these and they normally just close on their own.  Both of these are relatively minor issues.  

The last appointment was with Dr. Kays.  He was great and super knowledgeable.  He gave us a lot of information about CDH in general and asked us questions to get to know us personally.  After he gave us a lot of the information, he gave us specific information about Jasmine.  The MRI showed that she has stomach, spleen, part of the intestine, and about 10-15% of the liver up in the chest.  So actually, she falls on the less severe end of the liver up spectrum (liver up is typically the most severe).  It also showed she has about 22% lung volume.  The MRI measures lung volume based off of both lungs, while the u/s measures based off of the healthy lung.  I asked if either was more accurate and he said not really because they measure differently, but that MRI results are more reproducible.  So basically, her lung volume is likely somewhere between 22-41%.  Either way, he said both are survivable.  He gave her about a 50% chance of needing ECMO (less chance if her lung volume is closer to 41% and more chance if it's closer to 22%, so 50% was the rate for both combined).  And a 95% chance of survival.  I felt really encouraged by this.  He said NICU time could range from about 4-10 weeks depending on if she needs ECMO or not.

His staff gave us a quick tour of the hospital and then he wanted to meet with us again for some reason.   He said that the radiologist had just given him a call and had some concerns about the lungs.  He said that the lung tissue didn't look "normal" and that there was fluid around the right lung.  Obviously, I was crushed to hear that now maybe something else was wrong.  He said that the radiologist's concerns along with the fact that we have a 2 vessel umbilical cord instead of a 3 vessel warranted further genetic testing just to make sure there is nothing else going on.  So he is really encouraging me to get an amnio.  I am just devastated at this point.  I had all this hope and felt good and now something else??  I told him that and he said that's what they call the CDH roller coaster.  Things go well and then there always seems to be some type of bump in the road.  His nurse told me they have had several patients with this fluid around the lung and that it can just reabsorb, but that it gives them reason to look out for fluid showing up in other areas because they could indicate a condition called hydrops, which is very bad.  So I had to have time to process all of this.  But now I am still trying to remain hopeful.  We had already ruled out trisomy 13, 18, 21, and any sex chromosome related issues, so we know it isn't those.  I am just praying with everything I have that this amnio comes back clear.  I am just so afraid I won't get to take my daughter home.


Babysizer Cravings Pregnancy Tracker

peppersmith22kbamomma33ladythricestassischroederkmallsstalkinghorsescuba_chicklburke88sapphires-and-diamondsDumbgurl04mcb2016JJMNO1616Puddlewonderfulfrenchiekinplusonelinds0503ngolimentopsuxray07irenejeanmispandag_amossDDRRT1982ekendall09rmmorrisatreestump86lesliegolem
«13

Re: CDH- Update

  • Oh @sparklingdiamond I am so sorry for all the pain and fear you are going through. I have been praying for your family and will continue to pray for Jasmine. I hope your amnio results come back in soon. Hugs for you and your family.
    sparklingdiamondkbamomma33g_amoss
  • My lovetit is a hug @sparklingdiamond. Thank you for the update. Thinking of you and sending strength to both you and your baby girl. <3 <3 <3 <3 <3
    sparklingdiamondg_amoss
  • So grateful for the update! It's encouraging to hear such positivity from your visit. I'm sorry to hear about the amnio, you have my thoughts and prayers whole you wait it out!!!❤❤❤❤

    DS: EDD, December 19th, 2014. Born, December 19th, 2014!
    DD: EDD, July 18th, 2016. Born, July 19th, 2016!
    CafeMom Tickers

    Baby #3: EDD, April 16th, 2016
    Pregnancy Ticker
    sparklingdiamond
  • Sounds like you’re in fantastic, capable hands with Dr. Kays and his team. Continuing to send prayers and positive thoughts your way! 

    Me (33). DH (37). DD (2.2012). MCs x4. After 4 years & 7 months, due 4.2018!


    sparklingdiamond
  • It sounds like you are in good hands and that the doctors are being very thorough. I'm sure it's an insane roller coaster right now, but you are handling it with grace.  I'll keep you in my thoughts.
    Pregnancy Ticker
    sparklingdiamond
  • I’m so glad you found Dr. Kays and how knowledgeable he is with Jasmine’s case. I’ve been following your caringbridge updates and have been thinking of you. Sending so much love to you and baby girl. When is your amnio?
    Me, 28 & DH, 28 | 4.2011
    DD1 | 8.17.14
     BabyFruit Ticker
    sparklingdiamond
  • Thank you for the update. Prayers and thoughts for you and babe!  <3

    sparklingdiamond
  • Sounds like a roller coaster for sure, @sparklingdiamond! If you decide to do the amnio I hope it can eliminate pretty definitively a lot of the uncertainty for you. I’m glad to hear about all the good news you got!
    [url=http://www.thebump.com/?utm_source=ticker&utm_medium=UBB&utm_campaign=tickers][img]http://global.thebump.com/tickers/tt124d79.aspx[/img][/url]
    sparklingdiamond
  • Keeping you in my thoughts and prayers @sparklingdiamond ;
    sparklingdiamond
  • @sparklingdiamond I'm glad you were finally able to get some answers, I'm sorry that they weren't all positive though! Been following you on caring bridge, and sending you guys all the best!!
    sparklingdiamond
  • Thinking of you, your family and baby Jasmine @sparklingdiamond.  I'm glad you were able to get the testing done and at least know 1) where things are and 2) meet the team who will be helping you in this journey.  Sending lots of prayers and support through this rollercoaster. <3 
    Pregnancy Ticker
    sparklingdiamond
  • I am so glad you found Dr. Kays. He sounds amazing. Keeping your family in my thoughts. And will be praying your amnio has hopeful results!! Stay strong, you are amazing!

    sparklingdiamond
  • @tooraloorah hopefully on Tuesday morning. 


    Babysizer Cravings Pregnancy Tracker

  • I'm so sorry you are dealing with all of this uncertainty, it must be extremely stressful. Just know that we are always here for you to vent to! Sending so many positive vibes for you and your family!! 

    Me: 29 DH: 35

    Married 5/3/14, TTC ever since

    DX: Lean PCOS, Clomid resistant

    Femara 7.5 + Ovidrel = BFP! Due 4/15/18

    sparklingdiamond
  • Sounds like a lot of ups and downs, but it does seem like Dr. Kays was the right way to go. I hope the amino results are good if you choose to do it. And I'm glad it sounds like you had a nice, warm Christmas with your family! Thanks for the update <3
    BabyFruit Ticker Babysizer Cravings Pregnancy Tracker


    sparklingdiamond
  • So sorry @sparklingdiamond that you are going through so much right now. I can’t imagine the rollercoaster of emotions you have been going through. It sounds like you are in great hands with your Dr. and his team. It’s everyone’s worst fear not being able to bring your baby home but you are doing everything in your power to make sure your baby is taken care of and I pray this all works out for the best. I am thinking of you and your family 
    sparklingdiamond
  • Thank you for the update.  I have been sending good thoughts, vibes and prayers to you all week.  Hopefully there will be more ups then downs and you will be able to bring your little girl home.  Praying your amino comes back clear. 

    Anniversary

    Baby Birthday Ticker Ticker  DIStickerscom Ticker

    DIStickerscom Ticker
    sparklingdiamond
  • I’m so relieved that you got some good news, and sorry about more bumps. You and baby Jasmine are never far from my thoughts! Sending prayers for a smooth amino and some good news. 
    sparklingdiamond
  • I checked your caringbridge site because I had been wondering how your appts went. I'm sorry it is such a roller coaster. It seems like you are in the best hands with your dr! 


    Lilypie Pregnancy tickers

    sparklingdiamond
  • Fx for positive amnio results. We are all thinking of you and your little girl.  <3
    Me: 31yo DH: 38yo
    Married: 07/16/16
    TTC #1: 04/17
    BFP: 8/1/17 EDD: 4/16/18
    sparklingdiamond
  • Thank you for sharing your journey with us. I can tell Jasmine has a powerful asset in her corner fighting for her!  She’s so lucky you are her mom, seeking out the very best for her!  Anxiously awaiting more news with you!  
    sparklingdiamond
  • Sending lots of positive vibes for a good amnio. Baby girl is so lucky to have you! Continuing to think of you and your family <3
    Me: 31  DH: 32
    Married: 10/3/15 
    TTC: May 2017
    BFP: 7/20/17
    EDD: 3/29/18
    sparklingdiamond
  • Sending you tons of hugs and warm thoughts. I know the amnio was something you really didn't want to do, but I think it's so important to have the information your doctor needs. It sounds like you are in the absolute best of hands, though of course, we all wish you had smoother sailing. Please try to get some rest between now and the amnio. We are all rooting for you! 
    sparklingdiamond
  • @sparklingdiamond you are very strong. It sounds like you had quite a range of emotions and practical difficulties to deal with. Good luck moving forward.
    BabyFruit Ticker
  • So many fingers crossed for good amnio results @sparklingdiamond. Is your MFM team in Florida doing it? I hope so, because they sound better than your home MFM team. 
    Me, 28 & DH, 28 | 4.2011
    DD1 | 8.17.14
     BabyFruit Ticker
    sparklingdiamond
  • @tooraloorah Unfortunately no, it will be the one here doing it.  She is a good doctor here, just not a fan of the bedside manner.  So I think she is at least capable of doing the amnio safely.  Wish I could've done it there, but I had to leave yesterday.  


    Babysizer Cravings Pregnancy Tracker

    ftm_ohio
  • I have been thinking about you this week, @sparklingdiamond. Thank you for the update. You are doing such a fantastic job watching over your daughter, and I will continue to pray for health and peace for your family. 
    sparklingdiamond
  • I am staying on the hopeful side with you!  I hope everything leans towards the best chances for her <3
    <a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Parenting Advice"><img src="http://global.thebump.com/tickers/tt1d9795" alt=" Pregnancy Ticker" border="0" /></a>


    sparklingdiamond
  • I'm glad to hear the good news and I'm sorry that you got some not so great news too. I hope the amnio goes well and that you get some better answers  <3
    Baby Birthday Ticker Ticker



    Pregnancy Ticker
    sparklingdiamond
  • I am sending lots of love and prayers to you and DD. Whatever you decide for the amnio - it's the right decision for you. Do what you believe is best. You are already an amazing mama to your LO.
    Proud mama-llama of 2

    <a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Parenting Tips"><img src="http://global.thebump.com/tickers/tt1d99dc" alt=" Pregnancy Ticker" border="0" /></a>
    sparklingdiamond
  • Thank you for the update - I know many of us have been thinking about you this week. You are doing a wonderful job as an advocate for your baby and I hope this is a small bump in the long smooth road of her life.
    sparklingdiamond
  • @sparklingdiamond - glad you got some nice family time in, sorry there were conflicting emotions though the visit though. You are being a great advocate for Jasmine! I’m praying for the amnio to go well, and for results that help the entire FL team know how to proceed to give her a healthy long life! Hugs mama!
    Pregnancy Ticker
    sparklingdiamond
  • Happy to hear you got the MRI done. They really are the worst. I had mine done at 36 weeks and I felt like a bowling ball was on my stomach, it was horrible. 
    I also had a 2 vessel umbilical cord with my CDHer. I was told it’s common to have another defect with CDH babies but hopefully her heart and lungs continue to develop appropriately. Continued thoughts and prayers!
    sparklingdiamond
  • I am really glad you got such good news with the MRI!  I am sorry you had a setback afterwards, but each piece of good news is a major victory.   FX that your girl keeps winning battles like a boss!
    BabyFetus Ticker
    sparklingdiamond
  • Lurking from March...I am so very sorry you are going through this and am praying for good news.  Stay strong!
    sparklingdiamond
  • I am glad you are getting support and help from someone who knows what he is doing.

    So many hugs! 
    sparklingdiamond
  • Thinking of you and sweet Jasmine @sparklingdiamond! Thanks for the update and sounds like a positive visit overall. Prayers for a smooth amnio and good results!
    sparklingdiamond
  • rklinge0rklinge0
    Sixth Anniversary 2500 Comments 500 Love Its First Answer
    member
    edited December 2017
    Sorry about having to do an amino,  I imagine that's scary. But glad the news was somewhat promising about the lung capacity and survival rates. 
    May I ask what kind of hole it was in the heart? Was it a vsd or pfo, we had both but the pfo basically did nothing and they only patched it because she was already under.  
    Also hoping it doesn't turn into hydrops but I do know a few kiddos who had it in utero who are pretty healthy today. 
    sparklingdiamond
  • @rklinge0 No they didn't specify the type of hole.  You said a few kids who had hydrpos and are okay?  


    Babysizer Cravings Pregnancy Tracker

  • @-T- Yea I heard other defects are common too, which is probably why they are so adamant about checking things.  And I will have to do another MRI at 35-36 weeks that I am not looking forward to.


    Babysizer Cravings Pregnancy Tracker

    -T-
Sign In or Register to comment.
Choose Another Board
Search Boards