Brynlee's Journey

Brynlee // month eight

8 months old, say it ain’t so!

at 8 months, sweet Brynlee, you are taking off!

You weigh over 17lbs now- a far cry from that 10lb 4 month old who was sicker than we knew at the time.  I’ve never been so happy and proud of baby chub!  You wear 6-12 month clothing and 12 month boutique clothing.  You received breastmilk exclusively until you were over 6 months old.  With the stress of every day life and all that we’ve gone through this year, my supply tanked and I went through our freezer stash.  I still pump for you 3-4 times a day.  You receive 12-15 oz of breastmilk per day and then your other feeds are formula.  It was a hard pill to swallow as I wanted only the best for you, but I have accepted it for what it is now and moved on.  I’ll pump for you for as long as possible with a goal of 1 year and then 2 years.

pierre robin, pierre robin sequence, trach baby

July was a BIG month for you.

You began physical and occupational therapy.  After only 3 sessions, you were sitting up unassisted and loving your new freedom.  We love your team of therapists and they love you!  You are working hard and though you sometimes cry, your progress is wonderful.  Now that you can sit up, that’s all you want to do.  You’ll begin speech therapy later this year or early next year.  We are learning ASL and signing with you so we’ll have a way to communicate even if you can’t make sound quite yet.

pierre robin, trach

You were discharged from home health which was bittersweet for all of us.  We are happy that you are healthy enough to be discharged but will miss Jaime.  When you came home from the NICU and we found out there would be a nurse in our house several times each week to check on you, that did not sound like fun!  But then Nurse Jaime walked through our door on that Saturday and she fell in love with you and we fell in love with her.  She became more like family that “just” your home health nurse.  Bella would even sometimes cry when it came time for her to leave.  We know we’ll keep in touch and she’ll probably be back to check on you after your cleft repair surgery this fall.

pierre robin, trach

You continue to sleep through the night and rarely require suctioning overnight.  We usually put you to bed for your 8 o’clock feed and you sleep until 7 or 8 in the morning.  You prefer to sleep in your bed.  You also enjoy sleeping in the car, but you always wake up when we arrive at our destination.  You are not a cuddly napper- you want to be left alone with your pacifier.  There is no rocking you to sleep.  This is a good thing, but I sure would enjoy holding you as you slept sometimes.  You take at least 1 good long nap every day and a few cat naps.  On the days we have a lot to do and aren’t at home, you are fussy without your sleep.  Updating to add that as soon as I wrote this post, you decided you really did want to cuddle and sleep on your mama every once in a while.  I love it!

pierre robin, trach

You “eat” at 8AM, 12PM, 4PM, & 8PM.  Your day feeds are at 5oz and you receive 8oz overnight.  We stopped adding extra calories to your feed and you lost a little bit of weight so we fortify with a 1/2 scoop extra of formula per 4 oz during your feeds.   We were hoping to begin bottle feeds but another swallow study showed that you are not ready for liquids.  You passed your swallow study with super thick pudding-like foods so you do get to enjoy baby food now!  We add rice cereal or oatmeal to baby food until it’s thick enough and then you eat it up.  So far you’ve eaten pears & raspberries, peas, mango, bananas, and sweet potatoes.  You’ve turned nothing down but the sweeter foods like the pear & raspberry mix are definitely your favorites!  You are eating baby food once daily for now.  We have to watch you closely for signs of distress and aspiration (which stresses your mommy out!) and your food goes in your cleft and out your nose which is uncomfortable for you.  I keep the suction machine right beside you so I can suction your nose (you do not like that!) and your trach while you are eating.  Feeding you baby food is a lot of work but it’s so worth it!

pierre robin, sweethoney charlee

You continue to be our most content baby thus far.  And since we are pretty sure you are our last, I guess you get the award for “most content and quiet baby” in this family, haha.  You personality is calm and happy much like your dad.  Your temperament is sweet.  You are rarely mad and are as far from a diva as possible which is great since your sister has that covered.  Over the past week or so, you’ve entered into the separation anxiety phase and you want your mommy by your side or holding you most of the day.  If I can leave the room without catching your eye, you are okay with Dad until you spot me again.

You have two cute, crooked bottom teeth!  Those little teeth are sharp and you love to chew on my finger with them.  It hurts!

pierre robin

Appointments are finally beginning to slow down though therapy sessions have taken their place.  You had another g-tube change and we got the okay to change it at home from now on so you don’t have to go back to Dr. Gilbert for 1 full year!  You see the ENT every 3-4 months and cleft clinic every 3 months.  The quiet won’t last long though as you’ll be having surgery before we know it.  Your reflux is still under control with the new medicine so you only see the GI every 6 months as well.

pierre robin

We are so proud of you!  The other day, I was holding and cuddling you and I said “Everyone needs a baby like you!” then I laughed.  A few months ago, I wouldn’t have wished this on my worst enemy and now I’m saying everyone needs a baby like Brynlee.  God has turned things around for you and it feels so good to just exhale.  You are so healthy and happy, so content.  You very rarely whine about anything and you’ve given everyone who comes into contact with you a new perspective.  We look at you and see how happy you are after all you’ve gone through in your short little life and it humbles us.  How dare I feel sorry myself or you when you do not!?

pierre robin

I love you little girl.  I love you more than you will ever know and I am so glad you are mine.  Your little life hasn’t been easy, but you are such a blessing in my life.  I look at you and I can’t help but smile.  You make my heart beyond happy and bring such joy to everyone around you.

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