Wednesday, July 25, 2012

Going to Houston

I updated my Facebook friends a few weeks ago so I thought I would let my Blogger friends know too.  My  appointment in Houston is on August 1st at the Texas Fetal Center.  I have not been there yet but I already feel at ease going to them.  I will have a fetal MRI, echo, and ultrasound.  I will also get to meet up with a few dr's including a pediatric surgeon.  I hope they have more information for me than Lubbock did.  I also hope they can lay it all down a little gentler than in Lubbock also.

I still feel like I will refuse an amnio.  I am not 100% against it but I just feel like whatever the outcome is will not change anything so why not find out when she is born?  I also have to keep myself together until she gets here.  I will be going back to work (teaching) in a few weeks and do not want more bad news atm.  I have gotten a lot better on the emotional roller coaster.  I am not sure "accepted it" is the right term but it is something like that.

So as of right now I do not have any real new news.  Tomorrow I have a normal OB appointment with my dr in Amarillo.  I also have to do the hour glucose test and get a shot of Rhogam--because lucky me has O- blood.  I am praying I do not fail the hour glucose.  I did with my last baby and had to go for the 3 hour and is was miserable.

So we are leaving tomorrow for Austin, Houston, & Galveston.  We are going to make a little trip out of it and visit some family and friends.  I am pretty excited about that.  I will update as soon as I can after the 1st!

And for my prayer warriors that are praying for me and Sunni---THANK YOU!  I am beyond grateful.  I am on church prayer requests around Texas (I hear) and probably other states as well.  Thank You!  God is good and has already answered.  I also want to ask that you pray for 3 other babies as well that have already been born with CDH.  All 3 are several weeks old and can use your prayers!  I have been following their stories through their Momma's blogs and absolutely love them all.  Bonnie, Oliver, & Wyatt!
Thank You! <3

And here is a not so flattering picture at 27 weeks.......  (I think she is growing :)


  1. All the best. I am expecting my LCDH baby in the next 3 weeks. For me too, going to the bigger hospital and having the question answered helped me accept the journey. I blog at

    Do follow my little one's journey and hopefully it can give you the strength you need.

    Good luck with Houston!

  2. Following your journey and praying for the upcoming CDH fight. It is such a hard road. Please know that you are not alone and that I (along with other CDH mommies) are here to help and carry you along the way. You are not alone.
    Praying for peace and endurance for the journey.
    Rose (Jude's mommy)

  3. I am a nurse in SC and work with in a Maternal/fetal medicine and we see pt's with this while we don't deliver here we also work with a different center in our state and co-manage with them and we have them meet with the pediatric surgeons here as well. I realize you don't want an amino another option we have is a blood test that has good success in detecting trisomy 18,13 and 21 this is not the
    1st trimester screen ours is called Materna 21. One reason to get this is once Sunni is born and if, she is diagnosed with with one of these you can fight for her to have these surgeries. It would be a fight as some feel they will not do well anyway. They are websites to help you prepare for this and they have a great group of families and support. Now saying that your baby has a 20% chance of having a chromosomal issue but has an 80% chance of not having one, most so ours do not. Before you go to Houston write a list of questions you have for the Drs, we would have the pediatric cardiologist do the fetal echo, have you meet the pediatric surgeons and the Maternal /Fetal Doctor that is a lot of information and very overwhelming at all they throw at you. Please get the nurse's card she will be able to help you with your questions no matter how many times you call this is our job no question is to silly, this also goes for the Dr as well. One last thing no matter what you decide on the amino they should respect your decision, sometimes in a group you can have one that really wants you to, other are okay either way, if you don't feel comfortable with one let the nurse know most of the time we can arrange for you not to see them. I will keep you and your family in my prayers, I am glad you are going to Houston they have a wonderful program.

  4. First, Thank you for your prayers and for Wyatt's "shout out"! :-) I don't think I mentioned this before, but we did not do an amnio. It was not pushed on us either. I'm sure it helps that my regular OB and my specialist both are believers and wouldn't want to change the course of treatment either. And from my understanding, it's an option to end the pregnancy and that was not an option for us. Another thing we were told by our cardiologist was that the chances of this being "genetic" was slim to none. I hope this info helps some! Praying for you and baby Sunni! :-) God is good! He will give you all the strength you need to get through this!