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.

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.

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.

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.

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

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)!

Expect the Unexpected

If I have learned anything over the last four years on this journey with Brinkley it's 1) to trust my instincts and 2) expect the unexpected.  

That came in handy today.  Brinkley has been fighting off some type of respiratory crud so I have been checking his oxygen levels regularly (as I typically do during cold and flu season).  Our pulse oximeter no only measures his oxygen levels, it also measures heart rate.  Ideally, Brinkley's oxygen level is somewhere between 98 and 100.  Because of the settings on his pacemaker, his heart rate is usually around 100.  This morning his oxygen was in that ideal range but I noticed that his heart rate was erratic jumping around from the 70's to 130.  

My instincts kicked in and I went through a few steps and contacted his pacemaker specialist in Charleston.  After several calls from various people on her staff I got a call from her main nurse about 12:30.  The nurse said that the cardiologist's office is Greenville was expecting us at 1:00 and told me what they planned to do.  At this point, I knew something was truly wrong.  I told her that I would have to get him from school and couldn't do it by 1:00 but we were on our way.  I soon got a call from Dr. Raunikar, our local cardiologist who was on his way to the airport.  Again, a sign that I was not simply overly concerned.  

After arriving at the office and following the instructions that I was given, we were told that one of the leads of Brinkley's pacemaker is broken.  As a matter of fact, it has been broken since December 9th.  Several more phone calls transpired between various staff and our MUSC doctor and myself and the MUSC doctor.  

The bottom line is that we will be checking into MUSC on Monday, February 20th for open heart surgery number 3 to replace the pacemaker lead and the battery.  There is potential that more may be done but we won't know for sure until some preliminary work is done on the 20th.  Surgery will be later that week.  Please pray for us as we work over the next week to work out all the logistics.  This was definitely not on the radar.  Expect the unexpected.

As you can imagine, this has been a bit overwhelming to say the least.  Earlier in the day I was a mess.  The tears were flowing and the prayers were being lifted.  The Lord has been so faithful to us through each step of Brinkley's journey and I know He isn't finished.  I prayed that I would remember that in spite of the fear that may creep in.  We stopped at a light just a couple of blocks from the doctor's office and the song Overwhelmed by Big Daddy Weave came on.  The tears quickly began to flow again as I heard Brinkley singing along and I listened closely to the words.  It was just the reminder that I needed.   Each time his little voice sang "overwhelmed, overwhelmed by you" I became a little more overwhelmed not by my circumstances, but by His continued faithfulness.  

I'll continue to be overwhelmed and expect the unexpected.  

Stones of Rememberance

In the Old Testament God often instructed people to leave visual reminders when He had done something significant in their lives.  In Joshua 4 he had the Israelites leave stones at the Jordan River.  Verse 6 says, "They will be a sign among you. In the future your children will ask you, ‘What do these rocks mean?’" These stones of remembrance were intended to not only remind them but to also remind those that came after them.  

These days the Lord may not tell us to literally leave stones of remembrance but He does give us visual reminders of His faithfulness.  Today Facebook served as one of those reminders to me.  As I was looking at my memories I found this: 

A flood of emotions came over me as I thought about that day.  As if a complicated pregnancy, early emergency c-section, a complicated prenatal diagnosis, and seven weeks in the NICU weren't enough Brinkley decided to surprise us with the need for emergency open heart surgery at eleven weeks old.  There was so much that happened over the next five weeks that would test my faith and prove to me over and over again just how faithful my Lord really is.  (You can find many of my thoughts about that here on the blog in the December 2012 section.)

It was what I saw that I had posted a few hours earlier that day that brought me to tears. Over the last four years, I have thought about that day many times and have reread these statuses many times but it wasn't until today that I noticed this: 

  

I often listen to James McDonald's teaching on the radio and must have been that morning.  This status was followed by a picture taken at Reese's preschool Christmas program rehearsal and a check-in at the cardiologist's office.  

I am certain that I had no idea how significant this thought would become in my life.  I have heard that thought many times.  Sometimes it is worded a little differently, but the sentiment is always the same.  The tears flowed as I thought of all the ways that Brinkley's unexpected journey has been used so far.  To think of how much my life has changed (for the better) is almost overwhelming.  The faithfulness of the Lord never ceases to amaze me. 

While I may have Facebook memories to serve as stones of remembrance for me, Brinkley has the permanent visible scars.  His trunk may be covered in marks and scars but each one is a story.  A story of the faithfulness of my Lord.  A story of the power of prayer.  A story of strength and determination.  A story that will one day be his to share in his own words.  For the time being, I'll continue to share every chance I have.  I'll continue to walk through each door that is opened to walk with other families through their journey. I'll continue to share the tiny bundle of joy and blessing that I am blessed to have call me momma.  I'll continue to share until the day comes that he asks about his "stones of remembrance" and in turn shares on his own.

To Brinkley On Your Birthday

Four years ago we began a journey that I could have never imagined.  For thirty-three long weeks I had anticipated the day that you would join us.  Many (too many to count) days a sickness, two (sometimes more) doctor appointments every week, and countless hours of prayer and research went into those thirty-three weeks.  

There were days that I was unsure that I could do this.  The day the ultrasound tech saw that something wasn't just right with your heart.  The day Dr. Fredrick told us that there was a pretty significant chance that you had those precious extra chromosomes.  The day the genetic counselor called and confirmed those suspicions.  The day Dr. Raunikar told us that not only did you have special chromosomes, but you had a special heart too.  That was the day he prayed with us and let us know that God was right there, this was not a surprise to Him, He has a purpose for you, and that we would be supported the entire way.  (That was a really scary one!)  

So many of those biweekly appointments brought new concerns about how long you were going to hold out.  There was a day I asked Dr. Nuthalapaty how long he thought you would be able to hold on and he told me that I needed to pray that we made through that weekend.  Well, you made it through that weekend but at thirty-three weeks the doctors were afraid that it was all becoming too much for you and they admitted me to be on bed rest.  We officially hit the thirty-four-week mark (6 weeks early) and it was time for your arrival.  Dr. Ruggieri came into my room about 11pm the first night and explained to me that you probably would not cry or breathe on your own.  He told me about all the people that would be in the operating room and who would be caring for you.  He told me that they would quickly whisk you away and get you to a special area called the NICU.  The NICU is a special area where they gave you some extra time and attention that was needed to give you the best start possible.  

What he didn't tell me is that you would defy the odds!  That from day one you would have your own plan and would do things your own way.  To everyone's surprise, you came out crying and breathing on your own.  That tiny little cry brought tears to my eyes.  That cry was so much more.  It was just one of the many many ways that God reminded us that you are His and that He alone is in control.  It was a reminder of His goodness and the fact that indeed, He has a mighty purpose for your life.  

You were born on a Thursday and that Sunday they moved you from NICU 1 (where the sickest babies are) to NICU 2 (where the babies are making lots of progress and learning to eat and grow without quite as much attention).  When you moved into your private room I posted this own your wall:  

  Jeremiah 1:5    
  Before I made you in your mother’s womb, I chose you.
   Before you were born, I set you apart for a special work.

I had no idea that even as a 3lb 2.2oz tiny little guy that you would take this so seriously.  You have never wasted any time proving that He truly does have a special work for you.  You are always determined (often times determined to be mischevious), do your best, and push harder than anyone I know.  All the while you smile, laugh, love, and give "ugs" to everyone that crosses your path in the process.  Your sweet smile, infectious laugh, and exuberance infect everyone you come in contact with in the very best way.   

You push me to learn more, pray more, work harder, love more, give more, and push through every day.  You make me a better person.  You and your brother have given me a new passion and helped me find a purpose in this stage of my life.  Thank you for pushing me further into my Father's arms as I could not make it through this journey without the wisdom, love, and support that He alone can give.  

I am not sure what I ever did to deserve the privilege of being the mother of an extra special child, but I wouldn't trade it for the world.  I wouldn't give up or change one day of this journey.  I wouldn't change a thing about you and I can't wait to see who you become.  I have no doubt it will be extraordinary.  

As we celebrate four years of you today, my prayer is that you would never forget the sentiment that you so often sing, "it's who I am, it's who I am and I'm loved by You."  He is your Good Good Father and you are so loved by Him.  Despite the unknowns of what may come in your future, I know one thing for sure.  He has very special plans for you and you are loved beyond all measure! What a privilege it is to be a part of the story!

Happy Birthday Brink!  

Join Us For Buddy Walk 2015

It's Buddy Walk time again!  This year promises to be the best year yet since this will be the first time Brinkley will be walking independently!  You know that you want to join him and be there to see him triumphantly cross the finish line.  Don't worry, I've got all the details you need to make that happen.  Here's the link to the Team Brinkley page where everything is laid out for you!  Head on over there and order your shirt today and register for the Buddy Walks.

http://teambrinkley.blogspot.com/2015/09/buddy-walk-2015.html

Down Syndrome Awareness Month

It's Down Syndrome Awareness Month and we want to help you learn more about DS.

If you want to follow our daily posts be sure to "like" Team Brinkley on facebook.  You can find it here.

Here's a recap of what we've shared so far:

We've also shared these two special stories:

Meet Carter Murai.  He's a 7 year old that is making history as the first young model with DS to speak in a marketing campaign.  Here's his commercial:

Tim Harris is a 28 year old man who was voted Homecoming King and Student of the Year when he graduated from high school. Tim graduated from Eastern New Mexico University where he studied Food Service. He has traveled the world on a sailboat. Early in his teen years, Tim began to dream of owning his own restaurant. In 2010 that dream became a reality with the opening of Tim's Place. You can learn more about Tim here:

http://timtheman.com/

or here:
http://timsplaceabq.com/