sunshine & smiles

Brynlee had a great week last week.  It was by far our best week yet.  I did not find myself crying in the floor- not even once.  She turned 11 weeks old on Saturday, the 22nd.  The previous Sunday, the 16th, we took her to church for the first time.  My parents even joined us!  I had been itching to return to church for weeks, but knew that Brynlee needed more time.  Justin offered to let me go to church with Bryson and Bella, but truthfully, I am not ready to leave Brynlee’s side for more than a few minutes.

brynlee pierre robin feb 23

As excited as I was to finally return to church, the days leading up to it were full of nerves.  How would Brynlee do?  How loud would her breathing be in the quiet of the church?  Would she need suctioned?  Would everyone turn and stare when she coughed?  All of these questions ran through my head.  Our church family is no doubt amazing, but until you’ve been around a trach baby for a while, everything is new and scary.  Every time she coughs, people think she’s choking and dying.  Fortunately, her breathing was easy, she slept through most of the sermon (no offense, ha), and was content.  We know that won’t always be the case on Sunday morning.  There will be some hard mornings, but that first Sunday back at church went as smoothly as possible.  Thank God.

kids ready for church

I was looking forward to going back to church this week but according to many of my friends on Facebook, the “world’s worst stomach virus” is going around.  Justin and I discussed it and chose to keep the entire family home.  We can’t put Brynlee in a bubble forever, but she has an appointment this week to get her button (feeding tube) changed and getting hit with a stomach virus right now would be detrimental to her weight gain.

Brynlee's Journey Pierre Robin

Instead, we woke up and went to spend the day with my parents.  The sun was shining and it was a gorgeous day.  We loaded up all but the kitchen sink.. or so it feels when you leave the house with Brynlee.  It was our longest time away from home since bringing Brynlee home and even though my parents only live 5 minutes over the road, our van was loaded down like we were going on vacation.  A rolling suitcase holds the trach go bag and suction machine, a cooler is home to ice packs, feeding bags, the kangaroo joey pump, bottles, and breastmilk, and in another bag is my breastpump.  Add in my camera bag, laptop bag, extra clothes, and her rock ‘n play- it definitely looked like a Baugh family vacation.  It was worth it though.

brynlee sleeping feb 24 blog

The temperature was warm enough to take Brynlee out.  I fed her some from a bottle and then did her tube feed outside in the sunshine.  As her feed went in, she slept in my arms and it was a nice moment.  Hearing Bryson and Bella running around, playing while she dozed in my arms felt normal and right.  I’m so glad they got to spend an entire day outside playing!  That hasn’t happened in a long time and they sure needed it.  Life has been full of changes for all of us and while they have adjusted well, I know that they do not fully understand the how, what, and why.  (Not that anyone does.)  I’m proud of them both for taking things in stride especially since Brynlee requires a lot of my time and attention even more-so than a typical newborn.

brynlee feb 23 pierre robin blog

I told Justin last night that having such a great week really makes me dread the bad weeks even more.  There are good and bad times with any infant, I get that.  When you have a baby with medical issues, those bad weeks feel like the end of the world.  That said, I don’t want to spend the good weeks focused on what could happen tomorrow or next week.  I want to live in the moment and enjoy it for what it is.  During those hard weeks, I want to remember that the sun will come out again.  Brynlee reminds me daily to keep smiling.  I can’t look at her without smiling.  She’s such a happy little baby girl even after all she’s been through in her 11 weeks of life.

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. – Philippians 4:6-7

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Comments

  1. She’s such a beautiful little girl. You are handling everything amazingly! I can’t wait until the kids can all go outside to play. I’m tired of cold and snow and sicknesses!

  2. That Bible verse rings a lot of truth and we needed reminded of it often. Brynlee looks adorable in that outfit.

  3. Charity L. says:

    Glad you got to church. Love her outfit by the way. Where did you get it?

  4. Glad to hear she had a good week. My special needs baby turned two last week and I’ll admit until recently I have not wanted to leave his side. Of course because I have rarely ever left him we have a very close bond and he always wants me which can be exhausting at time but you are Mommy and Mommies know best when it comes to their babies.

  5. Oh how adorable. A little bundle of job. Love the dress.

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