Wednesday, May 4, 2011

Another Hill for our Mountain Climber

Just when we were thinking that our sweet babies were out of the woods....we've hit another hurdle.

Louise had her monthly visit with Dr. Troup to monitor her hydrocephalous. He measures her head growth and checks her soft spot to make sure sure she is still safely accommodating for the extra fluid on her brain. When he walked in he became immediately alarmed with the growth of the right side of her head. In the past, we have thought the asymmetry in Louise's head was a simple issue of molding that we would deal with in the future by positioning or the use of a big deal.
Dr. Troup explained that the rapid growth on one side of her head could suggest that 1 or more of the growth plates (separated by cranial sutures) on her skull have grown together. The growth plates on the head of an infant play a very important role in development and skull growth due to the rapid growth of the brain during the 1st year of life. The abnormal growth of the right side of Louise's head suggested that the growth plates on the left side had fused and it was her brain choosing the path of least resistance.

Unfortunately, a CT scan revealed that this was indeed the case with our sweet Louise. The condition is called Craniosynostosis and it's NOT related to prematurity or hydrocephalous. It is worrisome that the hydrocephalous puts pressure on the brain internally and craniosynostosis puts an external pressure on the brain.
Traditional treatment is a gruesome surgery that involves making an incision from ear to ear, total or subtotal removal of the skull followed by reshaping and replacing the skull with added hardware. Pretty Scary!
There is a newer and less invasive approach that can be performed on babies younger than 6 months old. It involves drilling a small hole and taking out a quarter inch wide strip of skull from her soft spot to her ear. Post surgery, she will wear a helmet to assist with correcting head shape. This video explains in 30 secs what it took Dr. Troup an hour to explain to me.

Louise is 9 months old, because she was born 3 months premature (putting her at a corrected age of 6 months) Dr. Troup (neurosurgeon) and Dr. DeBux (cranio facial surgeon) have agreed to try the lesser invasive procedure 1st. Louise is borderline too old for this procedure to work and our biggest prayer going into this is that it does.

Surgery is planned for Tuesday and will be done in Greenville. The cards that Louise has been dealt are not easy. She has triumphed over odds that have been stacked against her since day 1. She over came being born severely premature. She breathes normally with a lung that collapsed 4 times. She is developing appropriately, despite a bilateral grade III brain bleed at birth. She has learned to accomidate for the extra fluid on her brain (hydrocephalous) WITHOUT a shunt. This is just another hill for our lil mountain climber.

Ben and I can only pray for the strength that Louise has. As a parent, this is not easy to watch unfold. We don't understand why Louise has taken such a beating in her first 9 months of life. The stress is not easy on a young marriage not to mention we have 2 more babies to care for. My tears have dried up and I'm ready to be the loudest and proudest cheerleader has I watch my daughter conquer yet another battle.


  1. Although I do not know you and your family, you are absolutely going to be in my prayers for the next week and following after the surgery. God will give you the strength to be there for all three of your babies. If he brought you to it, He will bring you through it! May the peace of the Lord be with you and your family!! Prayers to you!!

  2. You are so strong! Clearly, Miss Louise takes after you. We love you all and are constantly praying for the babies, Ben, and you. Let me know if you need anything!

  3. I do not know your family but love looking at your blog and seeing those precious babies. Will be praying for you and your family during this difficult time. I hope that precious Louise gets squared away next week for a life time. So sorry y'all are dealing with all of this, stay strong!!


  4. awww Lucy I love you sooo much!!! I am praying and praying and sending lots of love your way!! You are the best mommy! I know your sweeet baby will get through this and eveything will be ok!!

  5. Hi! I don't know you but I came across your blog somehow a few months ago - we had the same due date and my twins were born premature as well. You and your entire family will be in my thoughts and prayers this upcoming week. Wishing the best for sweet Louise.

  6. Lucy,
    You and your precious family are in our prayers. Louise is especially being prayed for by our family and our church family !!! God has blessed ya'll so much with these beautiful children and I know He will continue to be faithful... He is so good to us all. Sending you a big hug and thanks for keeping us posted ♥ love always Katie Oliver

  7. Not sure if you remember me from the NICU but I also had triplets. My Haley was in the NICU while yours where. I've kept your sweet babies in my prayers often and will continue. Haley was diagnosed with the craniosyntosis but fortunately didn't require surgery. I will put your family on the prayer lists that I follow. May you feel the presence of the Lord very near and dear during this time. Love in Christ, Tanya Roberts