Tuesday, September 5, 2017

Day 5: 5 Days of Brinkley

Year 4 has was full of surprises as he grew and matured in so many ways.  He headed back to preschool for the second year and first official full year of 3K.  The highlight of the year was our very first family trip to Disney World!  The Toy Story ride was his favorite.  Llama Llama Red Pajama was a hit for Halloween.  Brinkley on the shelf made his return.  The new year brought some challenges as we unexpectedly faced surgery to replace his damaged pacemaker.  He took it like a champ and rocked that surgery with a short hospital stay.  We enjoyed a couple of stays at the beach where he found his happy place with his toes in the sand.  His personality started coming out in big ways and he proved he is the king of mischief in this house! If you are keeping score the hospital count is now 36 weeks and 9 surgeries.  

Monday, September 4, 2017

Day 4: 5 Days of Brinkley



Year 3 Brinkley learned to walk on his own (without his walker) and started preschool for the first time. We had the privilege of becoming a "miracle family" for Children's Hospital and representing the hospital all over the region. We met some wonderful folks including the Furman Men's Lacrosse team who quickly became his buddies and lead him to love all things Furman. We made our first trip to NYC to see him featured on the screen in Time Square and walk in the NYC Buddy Walk. (The subway and meeting his friend Freddie were his favorite parts.) Brinkley on the shelf made his first appearance.  Dr. Brinkley had his g-tube closed and one other surgery. We added a few more weeks of hospital stay to the count. The doctor appointments began to slow down a bit and therapy kept going strong.

Sunday, September 3, 2017

Day 3: 5 Days of Brinkley


Year two came with fewer hospital stays (4-6 weeks), lots of progress in therapy, learning to sit and stand on his own, finally eating baby food, and tons more love and snuggles. He graduated from in-home nursing care and we started using aid services. We still had far more doctor and therapy appointments than I care to count but we spent the majority of our time out of the hospital and had only 2 minor surgeries.

Saturday, September 2, 2017

Day 2: 5 Days of Brinkley



Year one included 26 weeks of hospital stay, 2 emergency open heart surgeries, 2 other surgeries, numerous ambulance rides, 2 medical flights, hundreds of doctors appointments (honestly I can't count them all), nearly 100 therapy sessions, more ER visits than I care to count, millions of snuggles & hugs, prayers from all over the world (literally), building an incredible care team, and watching our faith grow. It's not the first year stats that I would have wished for, but it's what the Lord BLESSED us with.

Yes, it was a blessing! We learned the trust the Lord, lean on each other, and to embrace and celebrate every small victory. I learned to see the Lord in the small things and to trust the instincts that He placed inside me. I learned to seek wisdom in ways I never would have otherwise. We built an incredible care team that loves this little guy almost as much as we do. I met some amazing people and have had the privilege to walk alongside them in their journey with their children. I have met wonderful medical professionals whom I have been able to pray with and for and to encourage and love on as they have loved us.

Though it is not what I would have planned or wished for, when we embraced the situation that we were in and asked the Lord to use it, He did! He has been faithful to make this very difficult journey one that is filled with joy. I praise Him for the victories and the lessons learned.

Friday, September 1, 2017

Day 1: 5 Days of Brinkley


Brinkley turns 5 in 5 days so here's to 5 days of Brinkley. Day 1: we welcomed our 3 lb wonder into the world with the help of a team of 10+ people. He was six weeks early due to complications and we had the NICU team ready to help breathe life into a baby they expected to be blue and lifeless. As is his style, he surprised us all and came out loud and proud with no assistance needed. He was quickly whisked away to see cardiology and the team of NICU doctors. I was finally able to see and hold him the next day. He was so tiny! That's half of a cloth diaper covering his entire body.

Monday, August 21, 2017

A New Year and A New Teacher

It's been a while, a long while.  A lot longer than I realized quite honestly.  Sorry about that.  As you know, life happens and right now life is happening really fast for me.  With that in mind, let's get to the point.  

It's back to school time! I, for one, could not be more excited about that.  Both of my boys thrive on structure and routine and I did a terrible job of making that happen this summer so the return of school has been long overdue.  Reese misses his buddies and Brinkley asks, almost daily, for Mrs. Young.  He'll grab his bag and stand at the door saying, "see Mrs. Young."  When I tell him not today his response is always, "I love Mrs. Young."  Well, your wish is about to come true!

Reese starts back tomorrow and Brinkley will have a home visit this week and start back next week.  This year will be a little different for both of my boys so prayers for a great transition are much appreciated.  Reese has spent the last two years with the same teacher and students as they looped together.  He also had the privilege of being in Mrs. Meares class again since she moved from kindergarten to 3rd grade Science.  Change is hard for him and this year will be totally new.  A new classroom teacher and a new Science teacher.  He finished 3rd grade very strong and I am looking forward to seeing how well he is going to do in 4th grade.  

Brinkley will be seeing some changes as well.  He has been in the same classroom the last two years as well.  This year he will be returning to his beloved Mrs. Young's self-contained class for children with developmental delays, but he will also get to experience something new.  I am so excited that he is going to doing inclusion in the traditional K4 class as well.  This is a huge step for him and us.  He thrives in an environment where he is challenged by the model of other children without delays.  I can not wait to see how he grows through this experience.  

Since both boys are moving into new territory with new teachers I thought it would be helpful to introduce the teachers to my boys ahead of time.  I put together these "Meet the Holders" sheets, for lack of a better name.  


Meet Brinkley


Meet Reese

Sunday, April 9, 2017

A Poop Standoff

If you know much about Brinkley, you know he is stubborn and quite determined to do things his own way in his own time.  (Anyone follow the apology standoff a couple of months ago?)  This hospital admission has been no different.  

We checked in dark and early Monday morning for his heart cath and we've been here ever since.  The cath went well and they ballooned his right pulmonary artery.  We were admitted for observation overnight.  In the process, we found out that there were some issues that had arisen with the OR and surgeon's schedule so we were on standby for surgery.  It worked out that we were able to get an OR and have the surgery on Wednesday (the original plan was Thursday).  Surgery went well and as planned.  He spent the night in the PCICU (Pediatric Cardiac Intensive Care Unit).  He had some episodes where he would scream out with pain and squirm around like he was trying to get relief from the pain.  This happened periodically over the next few days with most of the episodes being through the night.  (Very little sleep was had by anyone.)  

We determined that these seemed to be related to the fact that he had not pooped since Monday.  The gut may have already been irritated and full when he went into surgery.  The fact that he is so small and the GI tract is so close to the area where they were working made it feasible that he was having severe gas pain.   Add that pain to the pain from the incision (C-section moms you know what I'm talking about) and it was a recipe for disaster.  At the same time, his incision started draining (clear fluid not puss).  The thought was that the pressure from the gas pains may be causing the drainage.  

We started a protocol to remedy the poop standoff.  Apparently, Brink's GI tract is just as stubborn as he is and things have not moved very quickly even with interventions.  Yesterday we finally got a little poop and we've been more than 24 hours without a pain episode.  However, the drainage has not stopped.  It does appear to have drained less in the last 24 hours, but it hasn't stopped.  

The head of cardiology and the attending pediatrician are both pleased with his progress on the general side of things and are ready to send him home.  At this point, we are waiting on the surgeon to feel the same.  Our surgeon is not on duty this weekend so we've been seeing his partner this weekend.  We should see him tomorrow and hopefully get a better idea of what to expect.  

For now, we will continue to wait for some more poop action and the drainage to stop.  In the meantime, big brother is enjoying the beach.  Brink's a little jealous (mom too)!