Every time I even think of blogging, I am instantly overwhelmed. 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.
As soon as we were told Brynlee likely had Pierre Robin Sequence (or Syndrome), I thought to myself, “Do not Google this. 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. 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. Of course we were going to research until we knew all there was to know.
Looking back now, I’m glad we chose to become informed instead of choosing the ignorance is bliss route. 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. She had an amazing medical staff from the NICU nurses to her surgeons, but none were experts when it came to PRS. Because we began researching immediately, we knew about options that even her surgeons did not like distraction osteogenesis which can be performed on newborns. Her surgeons did not know DO could be done so early. Tongue-lip adhesion was never mentioned, but we did know about it from our research. Obviously, we chose not to take those paths, but I am glad that we knew all of our options. It empowered us and gave us more confidence when it came time to make those hard decisions regarding surgery. I still struggled with the tracheostomy, but I knew it was right for Brynlee.
We are now three weeks into this journey. I say “we” because though Brynlee is the one with the diagnosis, there is no doubt that our entire family has felt the effects of Pierre Robin. Our entire lives have changed immensely and will continue changing as we find our new normal. Our days now revolve around a tight schedule of trach cleaning, suctioning, feeding pumps, bottle warmers, pumping, etc. I will be cooped up in the house with Brynlee until flu/ RSV season passes and we won’t have visitors because a simple cold will land her back in the hospital. We’ll only leave for doctor appointments and we have plenty of those- 4 (well check, cleft palate specialist, ENT, & pediatric surgeon) within the next week. I don’t say that to complain (though I am certainly allowed to whine sometimes) because all of those things mean that we have Brynlee at home with us and I would not have it any other way.
Her 20 days in the NICU were the worst days of my life. No matter how I tried to get myself together and especially on Christmas day, I just couldn’t do it. A part of me was missing- Brynlee was missing. I carried her for 40 weeks and 2 days and then was forced to leave her. Even knowing it was for her benefit, you can’t make a mama’s heart understand why she doesn’t have her newborn to snuggle with. My mind understood completely but my heart was too broken to even begin to try to understand.
Since bringing Brynlee home Friday, we have enjoyed a wonderful weekend with all 3 kids. Bryson and Bella stayed with Gangan Friday night which allowed Justin and I to focus on getting everything set up and figure out nights. They came home Saturday and we have soaked up having all three of our children home. Admittedly, I am a little overwhelmed with the amount of stuff that comes along with Brynlee. We were sent home with enough supplies to get us through the week until our first shipments arrived and just- wow, she requires a lot of medical supplies and I have no idea where we are going to store everything. We’ve already turned the playroom into her nursery, but it wasn’t enough. We are hoping to enclose our carport ASAP to help make room for everything she needs and provide a space for the kids to play.
We have our first appointment Tuesday. If you think packing a diaper bag for a healthy baby is overwhelming, do a quick search for “trach go bag” and be glad you don’t have to worry about packing a resuscitation bag with you when you leave the house. Again, it’s all a little overwhelming and I don’t plan to sugarcoat it to make people feel comfortable. So tomorrow I will be packing our trach go bag and emergency bag as well as an extra g-tube button just in case. We also have a portable suction machine and a backpack to carry our feeding pump and supplies. Thank God for minivans. And modern medicine. And breastpumps.
As overwhelming as it all may be, I do know that it will get better with each passing day. It’s already getting better. I also know that I’m going to be exhausted and that we have a long road ahead with at least 1 more surgery and possibly several more. I know that some days are going to be hard as hell and I’m going to feel like a failure and want to wave my white flag. That is part of the Pierre Robin Sequence journey.
But, at the end of every single day, I also know that I would do it all over again without a second thought just to have Brynlee. I know that God is with us every single step, catching every tear, and celebrating every milestone. I know that we have hundreds of people praying for us and for Brynlee and that the support of our family and friends (both near and far) is absolutely invaluable. We’ve got this, because we are His and I’m learning to lean on Him a little more with each step.