sunshine & smiles

Brynlee's Journey Pierre Robin

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

Bryson is FIVE! {A Small & Simple Toy Story Birthday}

Bryson 5

Okay, so he’s been five for over a month now.  Even so, I still want to record the memory of his fifth birthday here on the blog.  I remember when he was born how age 5 sounded so old, so far away- and now, here we are.  5 is such a big age- a year of changes.  From a preschooler to a kindergartner.  Definitely no longer a baby.  Always my baby though.

Bryson 5

Thankfully, I had prepared for a small family gathering before Brynlee was born.  I knew that a big birthday bash was out with a newborn and I’m so glad I had the forethought to order some decorations ahead of time.  We had no idea that our newborn would be just a little more complicated than a typical baby or that she would spend 20 days in the NICU. I just assumed she would be home, celebrating her big brother’s 5th birthday with us.  Because I had ordered the decorations, plates, utensils, etc. from Oriental Trading, the only thing we had left to do was order a cake and pick up some chips and ice cream.  Oh, and buy his gift.  He asked for a Toy Story party this year, but I purchased Toy Story party decorations from Oriental Trading, ordered the cake from Walmart, and bought him the Toy Story 1-3 Box Set and a Pull-String Talking Woody.

Toy Story Birthday Gifts Decorations

We started the day off with a trip to the NICU to see Brynlee.  Bryson and Bella saw Brynlee for a few minutes right before her transport but other than that, they had not gotten to know her at all.  Bryson was allowed 15 minutes in the NICU so he went back with me to see Brynlee as a little birthday gift.  I could tell he was a nervous but he acted fantastic and enjoyed seeing his baby sister.  He quickly became bored and was ready to go back out, haha.  After that, he went back into the family lounge with Justin and Bella while I visited with Brynlee.  After my visit, I came out to find the amazing family support woman (who I cannot remember her name) entertaining Bryson and Bella by making crafts with them.  They were decorating foam Christmas tree with stickers and lots of glitter glue.  It was a touching moment for me and just one of the reasons I absolutely love Huntsville Women & Children’s.  Not only do they have an amazing, top notch staff that knows how to care for the most critical of babies, but they take care of the entire family.  When Justin & I visited the next day, family support had pinned those decorated Christmas trees on Brynlee’s board.

Toy Story Birthday Cake Decorations

After our visit to the NICU, we had planned to treat Bryson to Chuck E. Cheese, but he threw an attitude (he didn’t know our plan) so we skipped it.  We had to stop by Highlands to pick up the documents for Brynlee’s birth certificate then we ate lunch at a local mexican restaurant before heading to Walmart to pick up the cake and snacks.

Bryson's 5th Birthday Toy Story blog

After a stop by the house to pump (pump, pump, pump- that’s the life of a “breastfeeding” NICU mama), we opted to celebrate at Nana & Pop’s house.  In other words, I didn’t have the time or energy to clean my house for guests.  I was 3 days postpartum with a child struggling in the NICU.  Gangan and Aunt Brandi came over to help us celebrate Bryson’s 5th birthday.  It was small- just the 8 of us but it was what we needed.  I was afraid Bryson would be disappointed, but he declared it “THE BEST BIRTHDAY EVER!” and that made me smile. He was over the moon with our small little party, his new toys, and couldn’t wait to watch all three Toy Story movies.

Thanks to Oriental Trading for providing a gift card for party decorations and supplies. I purchase our party supplies from OT every year so I’m happy to partner with a company I use and love. All thoughts and opinions remain my own, as always.

when you don’t want to look back and you can’t look ahead

Brynlee Pierre Robin

When you don’t want to look back because it hurts too much.

 

And you don’t want to look forward because you know it’s going to be hard.

 

That’s where I’m at as of 11:24PM on New Years Eve.

 

And anything I say just makes me sound like Debbie Downer.

 

At the beginning of 2013, I wanted two things.

 

I wanted to find a church that we could call home.  We did and we now call those people our family too.  Success.

Baptism Oak Grove Baptist Church

 

I wanted to have another child.  After a terrible 2012, I asked God to bless us with a third child- our something good, I thought.  Kind of like a rainbow after the storm that was 2012.  Success.

 

Except things don’t always go as planned and His plans aren’t always my plans.  I’m tired of learning that lesson.  Really sick of it, honestly.  I feel like I should have already passed this test, moved on the brighter days.

Kolby's 17th Birthday

2012 was such a hard year.  Heartbreaking, leg breaking, ankle breaking- you get it.  Loss after loss after loss.  Hard losses.  Not those easy goodbyes when someone lived a long life.  Those hard goodbyes when young people are ripped from your life.

 

So I thought- surely 2013 has to be better.

 

And it was.  We were blessed to find our church and our church family.  We were blessed with a full term pregnancy full of kicks, indigestion, and as far as we knew- a healthy baby girl.  We continued to watch Bryson and Bella grow and thrive.  We celebrated 9 years together and 5 years of marriage.

It's Gravy, Baby! Family

But then the blows began.  A 14 year cousin killed in car accident followed by my Pawpaw two days later.  We spent Labor Day weekend grieving and went to the funeral home on Monday, Tuesday, and Wednesday.

 

And then of course, after 40 weeks and 2 days, Brynlee reluctantly decided to join us.  After 12 hours of the worst pain of my life, she was here.  Then, she didn’t cry and she couldn’t breathe.  And just like that, she was taken an hour away to receive the care and treatment she needed.  The tears began to flow and they didn’t stop and I was sure that my heart was definitely going to quit beating because it hurt so badly.

 

20 days in the NICU.  A tracheostomy and gastrostomy tube insertion at 9 days old.  She is home.  We are thrilled.

Brynlee Pierre Robin

 

But that doesn’t make it easy.

 

Ask any PRS parent and they’ll tell you that the first year is hard.  Most will say it’s the hardest year of their lives.

 

So as we ring in this new year- 2014- the anxiety and worry overshadow the excitement of things to come.

 

Today was a hard day.  A day that even a 2 hour nap and a hot bath couldn’t make better.

 

But tomorrow?

 

It’s a new year.

 

And while 2014 may not be better, I certainly will not allow it to make me bitter.

 

One day at a time.