Tongue-lip adhesion was never mentioned, but we did know about it from our research. Her surgeons did not know DO could be done so early. Because we began researching immediately, we knew about options that even her surgeons did not like distraction osteogenesis which can be performed on newborns. She had an amazing medical staff from the NICU nurses to her surgeons, but none were experts when it came to PRS. Turns out, Pierre Robin Sequence is quite rare and we would need all of the information we could possibly find in order to advocate for Brynlee in the coming weeks. Looking back now, I’m glad we chose to become informed instead of choosing the ignorance is bliss route. Of course we were going to research until we knew all there was to know. We were alone in a hospital room on the labor & delivery floor and our baby was an hour away in the only level III NICU in North Alabama. Wait and see what the doctors say about Brynlee, don’t turn to Google.” I even told Justin “Don’t go searching this.” By the time the sun faded that evening, Justin and I both had Googled… and Googled some more. There is so much to share and I could go on and on for days, but where do I even begin? I feel in my heart that part of the reason we were chosen for this journey is to help others and to share Brynlee’s journey with Pierre Robin Sequence here so that when a devastated parent turns to Google after hearing those words, they can find some sense of comfort knowing they are not alone.Īs soon as we were told Brynlee likely had Pierre Robin Sequence (or Syndrome), I thought to myself, “Do not Google this. Every time I even think of blogging, I am instantly overwhelmed.
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