Brynlee's Journey

Brynlee (month five)

I haven’t updated on Brynlee since February.  I do try to update Brynlee’s Journey on Facebook daily though so if you are interested, you may want to like that page to keep up with her.  Things went downhill in February for her and we had an extremely difficult few months.  Feeding and reflux issues consumed her for all of February and March.  She was puking up all of her feeds, was lethargic and near lifeless, was no longer meeting her developmental milestones, and had begun to lose weight.  Finally at the beginning of April, she was seen by a pediatric GI who formally diagnosed her with reflux and put her on Prevacid.  Within days, she was a completely different child.  Now one month later, she has gained over 3 pounds, is active, playful, and full of life.

5 months old pierre robin sequence

at 5 months old, Brynlee…

weighs 14lbs.

wears 3-6 month clothing and onesies, but spends most of her time dressed up in sweet little dresses.  After spending her first 3 weeks wrapped in hospital blankets because we were not allowed to put clothes on her, I absolutely love dressing her up.  Bows, ruffles, and dresses galore- she is so sweet and never complains when I change her outfit several times.


is finally taking more milk each feeding!  We increased her from 3 to 4oz last week with no problems.  Before Prevacid, she would puke more every time we attempted to feed her more.  I am still pumping and she receives breastmilk fortified with formula to help her gain weight.  We’ve increased her feed rate so it’s taking her less time to eat which is awesome because it was taking 1.5 hours per feed.

continues to sleep through the night and naps well several times daily.  She is awake and active more each day!


loves her Wubbanub, activity gym, and Rock n’ Play.

She rolled over for the first time on Mother’s Day.  She has great head control and is finally beginning to pick up her head some during tummy time.  She still loves to be swaddled and sleeps best that way, but she has learned how to break out of anything other than a super-tight swaddle.  She enjoys sitting in her Bumbo for a few minutes at a time.


Bryson has t-ball games twice a week and she seems to enjoy getting out the house and taking everything in.  She’s happy to sit in her carseat or be held during the games.  She never cries or fusses.  Brynlee is our most content and happy baby which is crazy with all she’s gone through.  I am loving our Joovy Ergo Caboose stroller for the games because it can hold Bella, Brynlee, the suction machine, and all of our extra stuff.

brynlee stretch

Since I last updated, Brynlee has gone to the pediatrician several times, the GI, cleft specialist, ENT, and audiologist.  She also had genetics testing which we received the results of last week.  Her array came back normal with no abnormalities or deletions.  That is fantastic news!  She was checked out by an ophthalmologist for Stickler Syndrome and showed no signs which is awesome news!  She has an ENT appointment today for a trach check/ follow up.  She has a pediatrician appointment tomorrow for a pre-op check-up.  The next week she will have surgery to place tubes in her ears.

Brynlee April change
A big change from the first week in April until the last week in April!

Unless you’ve been around Brynlee, it’s hard to understand her sweet spirit.  She is a very laid-back, go-with-the-flow baby (much like her dad) and just seems happy to be here.  She is an absolute joy to be around.  After 4 difficult months spent in fear, tears, and prayer, we feel that things are beginning to look up for her.  I can’t explain how it felt to watch her suffer every time she took a feed, but the relief I feel is beyond words.


We are looking forward to spending summer with Brynlee, taking her out of the house more, enjoying the weather, and navigating our new normal.  We’ve fallen into a routine with all of her care and it’s not nearly as overwhelming as it was just a few months ago.  Getting her reflux under control changed everything for us and for her and we are ready for whatever comes our way.  It feels like we can all finally breathe again and things are only going to get better!


Click here to post a comment

Your email address will not be published. Required fields are marked * is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to