Brynlee's Journey

Brynlee {at one month}

at one month, Brynlee…

weighs 8lb 14oz and is 22 inches long.  She was 8lb 3.6oz at birth so considering all that’s she been through, her weight is fantastic.  She started posting some gains last week and added 10 ounces in 9 days.

wears size 0-3 or 3 month clothing.  Since she couldn’t have her own clothing in the NICU, most of her newborn clothes were never worn.  She was our largest baby and she is too long for newborn sleepers.  She can’t stretch out in them.  I sorted through her clothes over the weekend getting rid of newborn sizes and anything that zips since that doesn’t work with a feeding tube.  Onesies are also a pain with the feeding tube so she is mostly wearing sleepers that button.

wears a size 1 diaper.  She’s my only baby to completely skip newborn diapers.  Her cloth diaper stash sits mostly unused but I have started putting them on her.  I am going to begin using cloth at home with her but will continue using Pamper’s Swaddlers for our appointments.

Brynlee First Month Pierre Robin Sequence Blog

is exclusively “breastfed” though not at the breast, of course.  It has been devastating for me not to be able to simply put her to the breast to feed.  I was absolutely hysterical about it the first two days, but I am okay now.  Pumping and being able to provide her nourishment has been very important for me, for my sanity, to feel useful, and I’m so thankful that God has allowed me to do that for her.  In the past, I’ve had no success with pumping, but with Brynlee, it was natural and my milk came in quickly with no issues.  I know that God did that for me and her.  She receives 80cc at 8AM, 12PM, 4PM, & 8PM.  Beginning at 10PM, she receives 30cc per hour until 7AM.  We attempted to increase her day feeds to 90cc last week, but she wasn’t ready.  We’ll continue upping her feeds so she can grow, grow, grow.  We have also picked the bottle pack up and are offering 10cc via the Pigeon nurser twice per day.  It’s not going so well, but we’ll just keep trying.

sleeps through the night.  We refill her feed, change her diaper, and suction her out around 2AM and she barely wakes for it.  She sleeps a lot during the day also unless she is in pain.  She wakes for about an hour around her care/feed time but other than that, she is content to snooze the day away.  It’s funny (not haha funny, but you know) that Bryson and Bella never slept and oh how I longed for a baby who would sleep.  I just didn’t expect it to be because her life was so hard.  That said, I am so thankful she sleeps the way she does, because I am exhausted.

Brynlee Jan 7

loves her pacifier, the Fisher Price Rock ‘n Play, and being swaddled in aden + anais swaddle blankets.

dislikes the swing and bouncer.  She also hates cold wipes and with the other two, we were just like “It’s not the end of the world.  It’ll be okay.”  With Brynlee?  Yeah, I ordered a wipes warmer from Amazon and diaper changes are much better now.  She also hates getting a bath, but sorry child, we have to do that.

gets the hiccups at least once per day.

smiles often.

is content and happy.  She only cries when she’s hungry, has a dirty diaper, or needs suctioned.

baby gear love- our favorite newborn products at one month.

Brynlee PRS blog

appointments/ medical.. as of today, Brynlee has been home 2 weeks.  If I’m counting correctly, we’ve had 9 appointments including home health visits during those 14 days.  She had her first well check with our new pediatrician last week and a follow up weight check this week.   We visited Children’s of Alabama to meet with a cleft specialist, audiologist, and speech pathologist.  We learned that she will have her cleft repair surgery between 10 and 11 months.  We’ve also had follow-up visits in Huntsville with her ENT who performed the tracheostomy and the pediatric surgeon who placed her g-tube.  Her stitches were removed and she looks fantastic.

I know you all know this, but I want it here just for the future when I’m looking back.

was born at Highlands on December 7, 2013 and immediately had difficulty breathing and presented with a submucous cleft palate and micrognathia (small jaw).  She was transferred to Huntsville Women & Children’s NICU and diagnosed with Pierre Robin Sequence.  Her case was thought to be mild-moderate in the beginning, but by day 5, it became clear her issues were severe and that surgery was needed.  She underwent a tracheostomy and g-tube insertion on December 16, 2013 at 9 days old.  She came home on December 27, 2013 at 20 days old.

Brynlee PRS blog1

things mama wants to remember

our NICU routine.  Justin and I quickly fell into a routine and we followed it every visit.  We would park, head up to the 3rd floor, and always stop by the bathroom before going through those double doors.  Then, we’d grab our gowns and sanitize as quickly as possible.  Brynlee was in the first space when you walked into the NICU so we only had a few steps to take, but in those moments, it felt like we couldn’t get to her fast enough.

the way that no matter how hard the day had been for me, as soon as Brynlee was in my arms, I could feel the tension release.  This wasn’t always the case.  Before her surgeries, holding her felt right, but it was full of anxiety and worry.  If anything, Justin and I both tensed up even more as we held her and watched her struggle to breathe and those monitors dip down as she fought to do something that comes naturally for most.  Seeing her desat into the 70s was very hard.  After surgery though, those visit were a saving grace for me.  My heart would flutter the closer we got to the hospital and I really just wanted to sprint down the halls to get to her.  (That would have been a sight.)  Once she could breathe, our visits happy and peaceful and packed full of training as we learned to care for her.  Sitting in the rocking chair, gently moving back and forth with my baby in my arms was the best part of my days.

shiley trach baby 3.5 neo

her first unplanned trach change at home.  After her bath, Justin was going to simply change her trach collar.  I opened a new trach and had it ready just in case, because well, things happen and babies are grabby.  Sure enough, he undid the Velcro on one side and Brynlee reached up on the other side and jerked her trach right out.  Even though we were prepared, I still panicked.  And ran out of the room.  I’m not even joking.  Thankfully, Justin is cool, calm, and collected so he put the new trach in and got her fixed up.  After that, I just sat in her room and cried as I watched her sleep.  It was so emotionally draining on me.

brynlee prs blog2

her first pediatrician visit.  This was Brynlee’s first outing and not only that, but I was going it alone.  I knew she had a lot of stuff and I was seriously dreading the appointment.  I decided that maybe I was just freaking myself out- surely it couldn’t be as bad as I imagined.  Oh, it was.  I cried the entire way to the pediatrician then I sat in the back seat with her and cried for about 15 minutes in the parking lot.  I finally gathered myself, grabbed her carseat, juggled all of the equipment/bags, and made it through the doors.  I sat in the “well room” and the receptionist asked if my baby was choked up.  This caught me by surprise because I am already use to Brynlee with the trach- she just sounds normal to me, so it hadn’t even crossed my mind that people would think she was sick and/or choking.  I answered that no, she just has a trach, and then I lost it.  The receptionist came out of the office and into the waiting room and just hugged me as I continued to shake and sob.  Then a grandmother/ mom duo came in with newborn twin girls.  Grandma immediately said, “I don’t mean to be mean..” and then pointed to the trach.  I said “It’s a trach.” and then she asked if Brynlee had trouble breathing.  That seemed ridiculous to me.  Why else would my baby have a trach?  Even though the visit was rocky, I was glad to have it over with so I could stop worrying about it.

mama brynlee blog

So the first month is over.  And we survived and it was hard, but so worth it.  Those first few days, I just couldn’t understand why God would give us this broken little baby, why our baby had to have such a rough start, why out of all the babies- mine couldn’t nurse, why eating and breathing had to be such a challenge for her, etc.  I was mad and irrational and hurt.  But now?  I look at Brynlee and I see nothing broken about her.  I see a fighter, a sweetheart- a perfect baby who was meant just for me.  I’m so glad God chose me to be her mama.


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  • Whitney this is one proud Gan Gan of a Wonderful granddaughter and Special Great Granddaughter , God knew what he was doing and you are doing a great job.. Love you

  • Praying for you. I have 2 boys and could not imagine going through what you and Justin have been through. Baby Brynlee has her own purpose to fulfill and is going to do great things…this is all part of His plan. Keep your head up.

  • You are an amazing Mom and God knew that when he sent Brynlee to you. You may have already tried this, but when my babies had to have meds, shots, or breathing treatments- swaddling sometimes helped keep their little hands out of the way. Also, Mom’s physical therapist mentioned a family that had sown velcro tabs on the sides of quilts- I imagine their may be times when this could be beneficial too. Thinking of you every day. You are an inspiration!!

  • Still sending my prayers for you all. I know it has been very difficult, but you are doing an amazing job with her. Thank you for sharing her with us. Cheering her milestones right along with you!

  • Brynlee is so lucky to have you as her mom. It’s been quite the month for you and you’ve handled it quite well, given the circumstances. Unfortunately, people will gawk and stare and ask questions. Keep up the good mommy work! 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