Psalm 139:13-14

"For you created my inmost knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made...your works are wonderful, I know that full well." Psalm 139:13-14

Friday, August 13, 2010

Baby Update (and Blogger issues*)

*Please bear with me as I am working on rearranging things on this blog. Blogger has been giving me issues, and sometimes I find time in the day to work on it - but it may take awhile. Thanks for putting up with me. Oh - the picture at the top is a 4D one of Hannah's beautiful face! I cried when I saw it on the big screen as they were working on getting a cute shot of her... I love it! Of course, I can't figure out yet how to reconfigure the picture setting so I can get a collage to fit on this blog layout. Someday...

Speaking of Hannah, we do have some news on her condition. We found out that she has something "mysterious" going on with her 2nd X chromosome. As most of you may know, boys have an X and Y sex chromosomes and girls have two X's. She clearly has two X's, there is no question or concern about her gender, it's just that one of the X's is missing a piece, and has some "unknown piece" added to it. This of course, threw everyone off (the doctors, specialists, lab scientists, etc) because it did not "fit their molds". They aren't able to explain it. All they can say is that it IS the cause of all of her numerous issues right now, though (enlarged ventricles in the brain, heart defect, cyst on bellybutton/cord area, 2 vessel cord, etc).

So what we know is that she has some sort of X chromosome abnormality. We just don't know what it is. According to the geneticists, her numerous conditions don't match up to any of the common, well known syndromes. This came as quite a shock to us, but we have had some time to process it. We have come to realize fully that we may never know exactly what is going on with our precious girl, and we are 100% ok with that. It took some time to get there, though. In a way, I am somewhat grateful for this "mystery syndrome" because it keeps confusing our doctors, and most importantly it creates a huge open opportunity for God to show His all-knowing, all-loving power in this situation. It is also a wonderful opportunity for an amazing miracle by our Mighty God! We remain eternally hopeful for baby Hannah's life... we love her JUST as she is, and we're looking forward to meeting her very soon.

Just a side note of 'praise' here: we met Hannah's neurologist, Dr. B. He was SUCH A RELIEF... compared to all of the other doctors and specialists that she has. He's like an old Grandpa... very sweet man, explained everything SO clearly to us, and spent ample time making sure we were comfortable with the information and understood it clearly. Plus - most importantly, he is a Christian...very encouraging! He also offered a wonderful program for Hannah to be involved in after she's born, that will last throughout her childhood as long as she needs it - it helps monitor her brain development and helps with any delays or brain issues she may have. Such a comfort to know that! God keeps providing for all of us, above and beyond what we could even think... we are so grateful.

We will be meeting with the NICU doctors next week, as Hannah will be spending some time there after she is born. I'll update you then, unless something comes up before. Thank you all so much for your emails, FB messages, and comments of support on here - we have been so blessed and surprised at how many people have been reaching out to us. Thank you! Please keep praying for our strength and endurance... we are in the home-stretch, now... and have many many "unknowns" coming up before/after her birth.


  1. Wow Erika, I had no idea, it is amazing and really sad how little I know about you and your family concidering how close we were! I hope things work out. My favorite saying of all times is "God will never give you more than you can handle and only He knows your true strengths!" Keep me updated! Sarah

  2. Sorry...which Sarah is this? I have so many Sarah's in my life : ) and I can't figure out who you are...sorry!

  3. sarah (chuey) pettibone I couldnt figure out how to post any way but anonymous! lol

  4. I'm so spacey these days... sorry! I think I just realized which Sarah you were ; ) I have pregnancy brain! You posted just fine, no prob. Thank you for your post!

  5. Isn't God amazing!! He is totally in control here. And, NOBODY knows everything about Hannah but HIM. WOW.

  6. Baby Hannah, you and Marcus need to get together and chat about your Mystery Unknowns! I tell you what Erika, I just love reading your Christian Mama take on all this. And I am so happy you are able to prepare for her arrival and find resources to meet her needs and your families. That must give a little relief to the on going Doctor visits and trips to specialist. So proud of you - Here comes the homestretch chica! Kisses, Prayers and Loves, B

  7. PS- LOVE, Love the Ultrasound pic, she is too cute already! Give my love to Micah (big brother to be) and your hubby I still have not met (sheesh)!

  8. It must have been so hard to hear the news, but as you have said, God has made Hannah fearfully and wonderfully, and in whatever physical condition, her soul is complete and her life is worthy. God will use (and has used) her for his glory!


  9. Hi there.
    Nice to meet you. My daughter Emily has a chromosome deletion.... so I have been spending the past 3 years learning all I can about them.

    Interestingly enough I stumbled across your blog through Lynnette's blog.

    If you ever need someone to talk to....stop by..... we can pray together!