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 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 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.
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.
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.
I have been following her journey on your FB page and i want you to know y’all are still in my constant prayers. She is beautiful and perfectly made!
Brynlee is BEAUTIFUL! And you guys are amazing! I’ve been following Brynlee’s story through your Facebook page and I am awed by your faith & strength.
You all are in my prayers. (And now, in the prayers of my Sunday school class. I hope that’s ok with you!)
I’ve been enjoying her pics on Instagram, She is beautiful! I hope she will be home where she belongs soon. Praying for you and your family. She has amazing parents and they know the Great Physician!
Congratulations! She is so beautiful and I know a delight and a joy to you and your family. I will be praying for Brynlee and your family!
I know that God gives special children to special people. You have been given a miracle and it will be a beautiful experience for your family to care for this beautiful little girl and to watch her grow and bring love unimaginable to you. My thoughts and prayers are with you and your lovely family. May God bless you all with peace, love and happiness now and in the future.
Brynlee is beautiful, congratulations to you all! I hope she is home with you soon and that this will just be distant memories.
Congrats on your beautiful new daughter! My prayers are with your family as you navigate new waters. Go bless.
Oh, Sweet Brynlee! I hope she is home soon! I just love that precious little smile 🙂 Keeping you guys in thoughts and prayer <3
Congratulations on the birth of your beautiful baby! She has wonderful parents and will do fine in your care. I wish her all the best.
Congratulations. She is so beautiful. God bless you all!
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