A Glorious Update!

IMG_0575When Pearl was a week old, the NICU doctors had an MRI done to confirm her prenatal ultrasound diagnosis. We had the scan sent to the Carter Centers in Dallas, who spend their time researching Holoprosencephaly & related brain malformations.  I received a call from them today, followed by an email. They have reviewed Pearl’s brain scan and diagnosed her with semi-lobar HPE, not alobar, as we previously thought. This is one level less severe than alobar HPE. We are estatic!

In some ways, this information seems a matter of semantics. This classification does not change who Pearl is. It does not change the way God created her brain and body. It does not change the number of days he has already planned for her. And for the most part it will not change her treatment plan. She still has seizures that need medication; she still needs a tube to help her eat; and she still needs therapy to help her learn to use her body. What it does change is the medical statistics and the way some doctors may view her prognosis. We may have more people joining us in hoping towards greater milestones and a longer life.

We’ve been the first to say these past 10 or so months since we found out Pearl’s brain wasn’t formed properly that none of us know how God will work through someone’s body – either in a physical or spiritual sense. Many of Pearl’s doctors have agreed that while you can tell how something is formed, you can’t know for certain how it will function. These things are still true. We still do not know what Pearl’s body may or may not do or how long we will have her with us, but our hopes are slightly higher now.

We are still a happy family. Pearl is still a very-loved little girl. God is still full of love and mercy and grace and capable of miracles. We are blessed, and while I’m at it, I should let you know that her g-tube is working out great. She had a small infection early on from the surgery, but antibiotics took care of that fairly quickly. She’s even able to sleep through a lot of her feeds. We are so grateful for all of her doctors who encouraged us to go through with it, for an amazing surgery team for working so delicately and intentionally, and for this community of all of you who walk along side of us, always praying.

Thank you for continuing to be a part of this journey with us!

~Ruth

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27 thoughts on “A Glorious Update!

  1. Praise God for the good news Ruth! Thank you for sharing this with us, and for sharing your hope and your faith. Little Pearl is beautiful. God bless you all.

  2. Wow Ruth and family , It was amazing to read that . You are right it does not change how God has created Pearl but it does explain why in your photos it seems as if Pearl is looking at you . I am so Glad that you are on this journey with God by your side Tracy

    Sent from my iPad

  3. Psalm 145:3 Great is the Lord and most worthy of praise;  his greatness no one can fathom.
    So thankful for good news for you and Pearl. Prayers continue for your family!

  4. That is awesome! I am so blessed by the way you view life, and our Father, and how you pour love out on your sweet little girl-and your other two wonderful children who are equally as precious!

  5. Ruth, I continue to feel humbled by my grumbling about my husband and I’s minor disabilities, when I read your joyous, God affirming posts. Your daughter is so special in so many ways, yet it would be very simple to forget that and see only her challenges.

    You definitely view the glass as half full and most assuredly you and Eric have taken God’s hand and allowed yourselves to be led along this path he has chosen for you, in complete trust that whatever is his will, you will be able to do it. I know you (and Eric) have both spoken of hard days where it seemed to much, but even then, your trust in God’s plan is unshaken. I can only hope to achieve that ‘letting go and letting be” at some time in my life.

    Meanwhile that cheeky, bright eyed girl with the wonderful ginger hair will still amaze us and, hopefully, cause the doctors to go back to their conclusions and QUESTION whether those conclusions were born of narrow-minded and book-learned medicine! I certainly hope so.

    Anyway, I wish you many days of wonderment and love and few days where it seems too much. I am praying for your family all the time and I know God answers prayers. Over the past week, I made a point of beseeching God, every hour, on the hour (so I would not lose track) to allow the little boy from Alabama to be released unharmed and, while they waited, to bring comfort and hope to his family. The situation seemed almost completely insoluble due to the isolation of man and boy: to my great joy on Monday, Ethan was returned unharmed (physically) to his family.

    It may be that God chose Ethan as he had Aspberger’s Syndrome and so, viewed things with a decreased level of emotion. It is my enduring hope that the love of his family combined with long-term specialized counselling for him and for the family, will enable him and his family to one day trust again and feel safe where ever they are.

    To God be the glory!
    Warmest wishesl
    Hilary ❤

  6. Praise God- she is such an inspiration!! Your family is blessed and I just wanna kiss that precious baby!! Rejoice- God is good ALL the time!!

  7. Always look forward to updates. This one surely warmed my heart and filled me with gratitude for the work the Great Physician is completing in His precious little creation. How wonderful to know He isn’t through with me or any of us, this side of the cross!

  8. Praise the Lord!! Pearl is one special little lady as well as your family…….your faith speaks volumes and it’s just so inspiring!! Keep praising through the storms that come your way…God will always equip you and bless you!!!

  9. This is fantastic news! In everything, God works for the good of those who love Him! Thank you for this wonderful update and hugs and kisses for you and your beautiful family. May God continue to bless you richly!

  10. Awesome news! Our daughter also has holoprosencephaly and was initially diagnosed as alobar but has since been downgraded to semilobar. We have a miracle buddy who was told she wouldn’t survive birth either like Jane and Pearl but is thriving! She was initially alobar but now semi! And a new miracle buddy named Liam has also been downgraded. God is amazing and those doctors can be great and wonderful but they don’t know everything. My high risk OB told me that doctors look at the images and whatever they have in front oh them but in the end, the good Lord decides. I praise Him for our miracles: Jane, Pearl, Mary Elizabeth, Liam and all the other wonderful HoPE babies out there!

  11. Words can not express how our hearts are touched by your little angel, Pearl. Thank you for sharing with us. God bless your family.

  12. I read all the posts as they come to me but the best items by far are the photographs of darling Pearl. I rejoice in my heart every time I see a photo that shows her growth into an individual, an individual in her own right, just as she was in the womb. Now she is with us in the world God is showing us the wonder of His creation and affirming that great thankfulness that most people feel to their Creator and to their mother: thank you for LETTING ME LIVE 🙂

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