Brynlee's Journey

Brynlee Elizabeth Paula

I’ve tried to write this post at least a thousand times in my head over the last fifteen days.  The words just refuse to come.  I have no idea what to say or where to begin.  Before her birth, I had so many ideas of how I would introduce Brynlee to you all.


I had no idea her introduction would require words like NICU, G-tube, tracheostomy, surgery, and Pierre Robin Sequence.  Those words are all a part of Brynlee’s journey now as we navigate our new normal and learn to care for our precious little girl.  Eventually, I will tell her story from the beginning but for now I will be brief.

Brynlee Dec 9 Pierre Robin

Brynlee was born at 9:17AM on Saturday, December 7, 2013.  She weighed 8lb 4oz and was 22 1/4 inches long- by far our biggest baby.  I woke up in the early stages of labor Friday morning and after timing contractions, we headed to the hospital around 10PM Friday night.  Labor was hard and painful and long.  When she finally arrived, she didn’t cry.  And so began her journey. She was immediately transferred to the NICU at Hunstville Hospital where she still remains.

Brynlee Dec11 Pierre Robin

Brynlee has Pierre Robin Sequence which has three main features- a cleft palate, a receding lower jaw, and a posterior tongue.  All of these things combined make it difficult for children with PRS to eat and breathe.  Pierre Robin is different for each child and for her first few days of life, her NICU team thought she was mild to moderate.  She began to tire out around day 5 and her case became more severe requiring a tracheostomy and a g-tube.  Those were both placed during surgery on Monday, December 16.

Brynlee Dec 17 pierre robin

She is now breathing on her own through the trach, gaining weight, resting well, and will soon be home.  We were hoping to have her home for her first Christmas, but we officially have a date- Friday, December 27.  She may not be home for Christmas, but we will get to ring in the new year with all three of our children under one roof!  We will room-in with her Thursday night to be certain we are ready and able to care for her without the amazing NICU team and if all goes smoothly, she’ll be coming home Friday.

Brynlee Pierre Robin

I don’t know God’s plan for Brynlee or for us, but I do know that she was meant for us and that we were meant for her.  I know that we were chosen for this journey and I’m still coming to terms with that.  I am constantly reminding myself that God saw these days long before they ever happened.  He knew exactly what was going to happen when Brynlee was conceived, He knew the pain and agony that we were going to face, and He has not left us.  He will not leave us and He won’t leave her.  That is our comfort.



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