Brynlee's Journey

Brynlee {month two}

at two months, Brynlee..

weighs 10lb 2oz. We are so happy to finally hit those double digits!

wears a size 1-2 Pampers diapers (those were leftover from Bella, I’m not even sure they still make that size) and has outgrown her newborn cloth diaper covers.  I am loving using prefolds and covers as well as Little Boppers on her. She wears 0-3 month clothing and we play dress up even if we don’t have anywhere to go.

Brynlee's Second Month Pierre Robin

eats 90ml at 8AM, 12PM, 4PM, & 8PM. Overnight she receives 36ml per hour.  This month has been filled with feeding issues.  She can’t seem to catch a break in that area.  Once we got her feeds under control so she could keep them down, she began coughing more.  The coughing triggers her gag reflex and induces spits right after or even during her feed.  Hopefully once this cough goes so will the spits.  She’s still exclusively breastfed and I pump anywhere from 5-7 times per day.

is still a great sleeper.  She sleeps through the night and much of the day.  We have moved her to a crib some so she sleeps in it sometimes and in the rock ‘n play the rest of the time.

loves being swaddled, held, and talked to.

still dislikes the swing and bouncer..  She did fall asleep in the swing one Sunday morning for a few minutes but other than that, nada.

Brynlee  PRS

smiles often.  She lights up the room with her smile and we can’t get enough of it.

has started mimicking others.  She’ll move her mouth and stick out her tongue.

enjoys being worn.  Justin wears her in the Boba 4G sometimes at night and she falls right asleep.

brynlee smile pierre robin

appointments/ medical

We took Brynlee to the pediatrician to figure out her feeding issues which resulted in us lowering her feeds during the day and upping them at night.  She also received another Synagis shot.  We followed up with Dr. Castillo, her ENT, who had nothing but good things to say.  She is doing well and her ears are still normal.  It’s very common for PRS babies to need tubes.  We follow up with him again in 8 weeks.

things mama wants to remember

It has been a good month, but a hard month.  Brynlee’s daily cares can range anywhere from easy to difficult depending upon the hour.  Some days are a breeze- she feels good, her feeds go in and stay down with no issues, her breathing is easy and she doesn’t require much suction.  Other days?  Her hands-on cares take 1.5 hours (at 8AM, 12PM, 4PM, & 8PM), she throws up after every feed, she cries in pain because of gas, and she needs suctions several times an hour.  Doing this alone during the day while also taking care of a 3 & 5 year old can make me frazzled and overwhelmed, but it is what it is.

trach change

During Brynlee’s trach change on February 1st, we heard her cry while her trach was out.  It was an amazing and bittersweet moment.  We had not heard her cry since December 16, 2013- the day of her tracheostomy.  Her cry was so perfect.  It was absolutely beautiful and it made me instantly burst into tears.  As wonderful as it was to hear her, it was very hard on my heart because it was another reminder of what I miss every single day.

As far as babies go, I’m not sure there could possibly be a more perfect newborn.  When compared to both Bryson and Bella as infants, Brynlee is a breeze.  She sleeps better and longer, she is more content and happy, etc.  If not for all of her other medical issues, she would absolutely be our easiest baby.  I think God probably knew we’d need a break so I’m glad He gave us a happy, sleepy little Brynlee.

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  • Have your read about a passy muir valve? (aka speaking valve)
    Ruby couldn’t tolerate it for more than just a minute or two until she had her jaw distraction, but from what understand from reading a few of your blog posts about miss Brynlee, she was able to breathe, just not very easily.

    The speaking valve lets the patient breathe in through the trach, but when breathing out, the valve closes and forces the air to go over the vocal cords.

    An obstacle we ran across was a pulse ox machine. Insurance covered the speaking valve, but not the pulse ox. an infant pulse ox was $850. After a few months of fighting, God worked some magic. Our pharmacy delivered a pulse ox that insurance covered 100%.

    we no longer need any of the medical supplies we have. If you are in the same boat and need supplies that insurance won’t cover… I will mail you whatever I have (for free). I have so much trach supplies and its a good thing there aren’t many babies that have trachs… but now I have no one to give these extra supplies to.

    I know I’m a stranger, but I’m a fellow trach mom and can help you with your daughters journey. Let me know if you need any supplies, or have any questions about the future surgeries or oral development. 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