A New Journey?

Hey family and friends!

We are still overwhelmed by God’s goodness to us! We cannot believe God has allowed us so much time with our beautiful little girl! She is 8 days new and still going so strong!

I am just writing to give y’all a little tiny update!

Yesterday, we took Annalise to her one week checkup. It was the first time we got to leave the house! It was kind of exciting being able to pack a diaper bag (even if it was for one little trip to the doctor). Of course I had to document the first trip so here you go! 🙂

 

We were so proud of her! She did so well and all of her vitals were perfect. It was during this visit that we talked about doing an ultrasound on her head just to re-look at things. Now that she is out of the womb, they can clearly see what is in her head.

So….after thinking about it and praying about it….we went to Children’s Mercy today and did the sonogram.

We were in for such a shock!

First, Annalise got her blood drawn. I was a nervous wreck. She never had any blood drawn or any type of “pricking or prodding” done at Shawnee Mission because she wasn’t expected to live. So we didn’t want to spend the time doing that instead of having her with us. Needless to say, having her first needle put in today was terrifying. I didn’t know how she would react but she was such a trooper! She barely even flinched. She is such a tough fighter.

Then we went back to do the sonogram. After the lady looked around for awhile, she went and got the radiologist. The radiologist first asked us what we were told she had. We explained how she was diagnosed with alobar holoprosencephaly and hydrocephalus. He (the radiologist) then told us that she does NOT have HPE.

Say what?!

So for the past 18 weeks we have been trying to digest and understand all we could about HPE just to find out she doesn’t have it?

Boy, are we on a roller coaster ride!!! (Where can I get off?)

Come to find out, Annalise is now diagnosed as having hydrancephaly. This is where the brain’s cerebral hemispheres are absent to varying degrees. So from what we understand right now, Annalise does have brain tissue and her hemispheres. It’s just that the ventricles, where the fluid is stored, were larger than they should be when formed. So the brain had to form around the ventricles in a sense. Because of this, the fluid was building up so much that it just pushed the tissue to the outer rims. All that to say, the brain is somewhat there, it just isn’t fully formed. Her brainstem and cerebellum are completely developed though which is why she is doing so well.

We actually left Children’s Mercy feeling pretty hopeful because the radiologist made it sound like she could live but would just have learning disabilities. But then we got home and got a call from our pediatrician. She told us that the outcome is still going to be the same. But some children with hydrancephaly can make it for up to a year. We then asked about draining the fluid and if that would help. She told us that they could put a shunt in to where the fluid would drain into her body and she would just pee it out….but doing that means undergoing surgery. Our pediatrician told us that a lot of babies with this condition who undergo this surgery end up getting an infection from it….and that this infection usually ends up making the baby pass.

So here we are on this NEW unexpected journey…trying to figure it all out, AGAIN!

Am I completely overwhelmed, exhausted, and shocked? Yes. Do I still believe that this is all part of God’s plan? Yes.

Just like Kevin said yesterday: God is sustaining her and will continue to do so until He calls her home. God has numbered her days and He is the only reason she (or any of us) is alive today.

We are so incredibly grateful for the days we have had with her and the ones yet to come.

And honestly….we know ultimately that one day we will see her again and she will be without pain, without her conditions, and she will be with the Savior. 

But for now, we just ask for prayers in the coming days as we find out more about this new journey.

We love you all and can’t wait to share more of our little fighter with you!

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11 comments

  1. Connie Weber · February 26, 2015

    God is good. All the time!! So glad you asked to have the test done. Hang in there mom and dad! She is one beautiful girl. And she has a set of amazing parents as well. Keep writing and maybe you should become a writer in the future!!!

    Like

    • MAUREEN thomson · March 14, 2015

      What A Lovely Baby you are Annalise and what.a lovely Mummy and Daddy you’ve got God will look after you God is Good xxx

      Like

  2. kristin buckalew · February 26, 2015

    I just read your story and it touched my heart. I wish there was more I could do. Being that I have 2 sons of my own, I couldn’t imagine what you’re going thru. I will be praying for Annalise and your family… praying hard!

    Like

  3. onenewmexican · February 26, 2015

    I found out about your journey by seeing updates “liked” by a college friend, Christy Wright Kirby, on Facebook. I have been completely amazed. I offered once, a long time ago, to put the Kirby’s up if they needed to come to Boston for any medical stuff (don’t let my email address fool you, I moved years ago) but they already had plans to go to the Mayo Clinic in Rochester because it was much easier to get to. I am more than willing to host all of you if you would like to come to Boston for another professional opinion. We have A LOT of great hospitals and specialists in the area. I wish I knew a specific specialist to refer you to, but I’m pretty confident we could all work together together to find someone. Let me know if you want to come this way!

    Bethany
    Onenewmexican@yahoo.com

    Like

  4. onenewmexican · February 26, 2015

    I think my last comment must be waiting moderation, but here’s a link to Boston Children’s Hospital’s link to their hydrocephalus program.

    http://www.childrenshospital.org/conditions-and-treatments/conditions/hydrocephalus

    I really do mean it, even though we are strangers, we are neighbors though Christ, and you are welcome to our home.

    Bethany

    Like

  5. Rachel · February 26, 2015

    I love following your journey and to watch your faith in God grow so much more everyday. Sweet A will always know the love from her parents and you will always be thankful for that. Prayers to you guys on this new journey.

    Like

  6. Elizabeth Ludwig · February 26, 2015

    I, too, found your blog through friends on Facebook. Thank you for allowing us to be a part of your faith journey. I’m praying for God’s continued strength, comfort, and wisdom on you all, especially little Annalise!

    Like

  7. Andrea Cox · February 26, 2015

    I’m in Kim Sawyer’s Hope Harbingers group, so I heard your story through her. I’ve been praying for you guys and will continue to do so. I love that y’all are keeping so strong and trusting God for whatever His plan is. That is not always easy, yet you make it look so simple. Appreciate each day and trust always. I love it!

    Blessings and hugs to you and that cutie pie,
    Andrea
    writingtoinspire.blogspot.com

    Like

  8. usolyfan · March 1, 2015

    My daughter is nine and has shunted hydro. I know there is a new procedure they are doing now in place of a shunt. Would your daughter be a candidate for that procedure? We know several kiddos that have had it done rather than a shunt placement.
    Thank you so much for sharing your story! It offers so much hope! I will continue to pray for your little family. What a precious gift God has blessed you with.

    Like

  9. Meg Farrington · March 11, 2015

    So incredibly encouraged by your steadfast trust in our good Lord! Lifting you all up in prayer tonight– for healing, grace, and strength to continue to glorify Him in the midst of this trial, as you say so well, no matter what happens.
    Love from Jackson, WY
    Meg

    Like

  10. Melanie · March 12, 2015

    It is Christ will that Annalise thrive. Father I just pray right now for complete restoration and normal brain functioning to Annalise brain. Father I bind and I cast out any unclean spirit that maybe coming against Annalise. I speak healing and I speak life over Annalise. Lord it is your Love and your grace that we may ask this of you. Father I ask this in your name…Amen

    Like

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