Brent's Journey - Part 4

Brent's Journey - Part 3

Brent's Journey - Part 2

Brent's Journey - Part 1

9 Months And Counting...

First Haircut

We have not updated the blog in quite a while.  Primarily it is because we mostly update Brent's Facebook page now.  (www.facebook.com/brentsspecialheart)  We find most of our friends and family use Facebook, and it is easier for us to keep everyone updated with quick posts on his page.  Still, I realize not everyone uses Facebook, and I wanted to provide a quick update for those of you who may stumble across this page.  When we first learned of Brent's congenital heart defect, we found a few blogs that were very helpful in educating us about what we might expect in the coming months.  I'm hoping this blog will serve the same purpose for other families experiencing the same journey.

Brent turns 9 months old tomorrow!  June 2nd of 2014 was when we first learned of his diagnosis,
and it is a day I will never forget.  We had the fortune of learning of his diagnosis in advance of his birth, so it gave us about 3 months to research and plan for what we were up against.  There were many times in the 3 months before his birth that I wondered if we would make it to the 1 month, 3 month, 6 months, 1 year mark, etc.  Brent overall is doing very well for all he has been through these past 9 months.

After the Glenn

Brent had his first open heart surgery in September just 12 days after being born.  He was in the hospital for 25 days following the first surgery.  He had a heart catheterization surgery in early January of 2015 in preparation for his Glenn open heart surgery, which he had at the end of January.  During his Glenn surgery, his diaphragm was paralyzed, which delayed his recovery.  He was in the hospital for 2 weeks, and there was a possibility that he would have to come home on oxygen.  Thankfully he recovered enough where he was able to come home without it.  He has regained partial function of his diaphragm in the months since his surgery, and we are optimistic he will eventually regain full function, though it is not guaranteed.  Brent also had pacemaker wires implanted during his Glenn surgery since he will likely need a pacemaker in the foreseeable future, but thankfully he does not need one yet.

Brent does weekly physical therapy as he is a bit behind in his physical development due to his surgeries and all the time in the hospital.  At 6 months old, he wasn't even able to roll over on his belly and he HATED tummy time.  At 9 months old, he is now rolling around and tolerating tummy time very well.  He still does not attempt to crawl and he is not sitting up on his own yet, but he is getting stronger each day and we can see him making positive strides in building his core strength.  Milestones look different for heart babies, and we are careful not to compare his journey to that of his older 3 siblings.  Brent will learn to crawl and walk in his own time, and we are quiet content with his progress.

Brent and Bryce

We are seeing the cardiologist every 3 months now, which is a big change from the weekly and bi-weekly appointments we had prior to his Glenn.  He is caught up on his vaccinations and starting to build up his immune system with the occasional cold.  We have an upcoming appointment to check for fluid build up on his brain.  He had a minor brain lesion at birth which they were hoping would resolve on its own.  He has a sedated MRI in the next few weeks, and we will learn whether or not he will have to have surgery on his brain.  We are optimistic that he will not need the surgery, but we have also learned that anything can happen on this journey.

Although the past 9 months has had some long and scary days, it has also been filled with a lot of love and joy as well.  On most days, taking care of Brent isn't much different than what we experienced with our other kids.  He laughs, he coos, he plays, he smiles at his mommy and daddy, he loves his siblings, he cries when he is tired or hungry, and he gives us lots and lots of diapers to change!  His condition has just given the perspective to enjoy these moments a bit more than we might have done otherwise, and for that we are very thankful.

Facebook Updates (Surgery and Post-Surgery)

Post surgery recovery

Brent had his first heart surgery on Friday, September 12th, 2014.  For the surgery, they did a PDA ligation since his PDA had not completely closed as it normally does.  Additionally, they did a Pulmonary Artery banding to regulate the flow of blood to his lungs.  Since Brent only as a single pumping ventricle, he was pumping too much blood to his lungs, and not enough to the rest of his body.  The band goes around his pulmonary artery, and restricts blood flow to the lungs since blood follows the path of least resistance.  The goal was to force more blood to his body, which should help him with his labored breathing, heart rate, and weight gain.

His first day or two after surgery were largely uneventful.  He slept a lot

Daddy caught a smile!

the first 24 hours or so due to sedation and the pain medicine he was on.  He was moved back to the cardiovascular ICU (CVICU) for observation immediately following surgery.  He was kept in the CVICU for approximately 5 days and was just transferred to the regular cardiology floor for continued observation.  During this time, our family also attended CPR classes as Children's Medical Center, as they are required prior to Brent being able to come home.  We feel more confident in being able to respond to a potential emergency - but hopefully will never have to use the training.

After tubes/wires removed

After 3 days in the CVICU, Brent was able to get his heart wires (temporary pacemaker wires) and chest drainage tubes removed.  During the time he had these in his chest and heart, we were unable to
hold him, so we were about as anxious as he was for the tubes and wires to start coming out.  Monday morning was the first opportunity we had to hold him since his surgery Friday morning, and it sure felt good!

The goal over the next several days is for Brent to remain stable with his breathing and heart rate, and especially for him to gain weight.  If he can do these things, there is a good chance he could be coming home within a few days.  We are very anxious as a family for him to be able to come home so that we can start living together as a family again, but want to be sure that his is stable and where he needs to be health wise for this to happen.

His next surgery, the "Glenn" will be at 4-6 months of age.  This will begin the reconstruction of his heart, and means that we will be back in the hospital in a few months going through all this again.  However, we are looking forward to a few weeks/months of relative normalcy in the meantime.  Our little heart warrior is putting up a good fight so far, and I am so very, very proud of him!!!

Facebook Updates (Before Surgery)

Looking at Mommy!

Most of our updates on Brent over the past couple of weeks have been via his Facebook page called Brent's Special Heart.  We have found that most of our family and friends are on Facebook and it's quicker and easier to update.  However, I will continue to update this blog because not all of our friends and family are on Facebook.  Also, when we first learned of Brent's diagnosis, I found a few blogs that parents had been updating for their kids with DILV.  These were very valuable to us, and I hope that our blog will be a source of information, inspiration, and comfort to other families on their heart journey as well.

Brent spent the first 3 days in the NICU at St. Paul hospital in Dallas.  Overall, his first few days were very positive.  He had a lot tests and labs and was closely monitored, but he was eating well, stable, and exceeding expectations despite being born 4 weeks early and dealing with a complex heart defect.

Transport team for Children's

After 2.5 days at St. Paul, he was transferred to Children's Medical in Dallas - one of the top pediatric heart hospitals in the country.  Over the next several days, Children's monitored him, ran additional tests including echos and ultrasounds, lab work, etc.  The goal during this time was for him to gain weight, remain stabilized, and for his doctors and surgical team to come up with a plan for his initial surgeries.  Like his first couple of days at St. Paul, Brent continued to do pretty good overall for a few days at Children's as well.

Brent's Room in the ICU

After approximately 7 days, Brent began to have labored breathing and increased heart rate.  The doctors warned us this would occur, yet it was still difficult to watch.  Without being overly technical, infant's bodies undergo significant changes in the first few days after birth as they adjust from fetal circulation to normal circulation.  As Brent underwent these changes, the impact of his heart condition got more and more pronounced.   We knew he would be having surgery soon, we just weren't sure when exactly.  The doctors wanted him to gain weight as he was small due to being born early, but he stayed about the same weight for over a week.  He had dropped half a pound to about 5lbs, 6oz since being born, and we really couldn't get him to gain weight - and it was a chore for him to even sustain the weight he was at.

This picture is from the night before Brent's surgery.  Although I was lucky to catch a brief smile from him when taking the pic, it was a very difficult night for him.  His breathing was very labored, his heart rate was too high, and he wasn't allowed to eat after midnight.  The only time he was happy on this night (September 11th ironically enough) was when dad was holding him.  So, I stayed up most of the night holding him and comforting him as much as I could, knowing that surgery was soon.  In fact, his heart surgery was scheduled for 7:30am on Friday, September 12th.  Although my wife and I were very anxious and nervous, we knew that he needed the surgery.  Our little boy was very sick, and getting sicker by the day.

Facebook updates (After Surgery) coming up in the next post...

Mommy with her little man a couple of days before surgery

He Is Here, He Is Real!

Brent Ethan Dunlap

One of the helpful and enjoyable things about Brent's pregnancy, especially after his diagnosis, was seeing it through the eyes of our 3 year old, Bryce.  We got to the point where we were able to see Brent almost weekly through the ultrasounds he was having done.  Bryce went to many of the appointments with us, and prior to seeing his brother on the computer screen, he used to ask us all the time "Is he real?"  From his 3 year old perspective, he heard us talking about his brother, but couldn't see him, so in his mind he wondered if his brother was real.  During the same ultrasound where we were waiting to figure out exactly what Brent's heart condition was, Bryce saw a 3D image of his brother for the first time.  I asked him "What do you think of your brother on the big screen?"  Bryce's reply was simple, but one that I'll never forget - he simply said "He's real" and smiled.  That's the moment he realized he was having a real little brother, because he never asked us after that if his brother was real.

One of the things that happens when you find out your child has a life threatening condition is that your mind can sometimes run wild with all kinds of "what if" scenarios, many of which you never want to consider or think about.  You wonder and worry about the future, and until they are born, you don't have your little one to wrap your arms around or their smiling face to help ground you in the moment.

The future is still uncertain and difficult to ponder at times, but we have a new source of inspiration and strength now.  I've felt his tiny little hands grasp my finger, and it reminds me that he needs me to be strong.  I've kissed his soft cheeks and looks into his beautiful brown eyes as he sees the world around him for the first time, and it reminds me that there is hope and wonder and love in our future, no matter how uncertain it is.  I've heard his sweet cry, and it reminds me that though there will be difficult days full of tears ahead, I've been so, so, so blessed to have the privilege of being the one who will comfort him and wipe those tears away.

My little man is here!  He is my warrior, my hero, my inspiration, my hope, and my strength.  He is all these things, because he is real!

A Surprise Shower and A New Normal

Dave, Grace, and Bryce

This past week my team at work surprised my wife and I with a baby shower for Brent.  It's actually the third (and last!) baby shower my coworkers have done over the years for my wife and I at my workplace, the first occurring all the way back in 1999 just prior to the birth of our only daughter, Brooke.  Each baby shower has been memorable and blessed us differently and for different reasons. This particular shower helped by giving us a moment to pause and celebrate the impending arrival of our son - something that should occur naturally and normally in a pregnancy.  But this time around is different, and I'm actually grateful for it because it's creating a new reality, a life changing "new normal", that we are adjusting to more and more each day.

There is a scene in one of my favorite movies, The Matrix, where Morpheus says to Neo "I imagine that right now you're feeling a bit like Alice, tumbling down the rabbit hole".  (I've included the clip from YouTube at the end of this post)  It's a nice analogy for the way the past few months have felt since Brent's diagnosis with the whirlwind of OBGYN visits, Perinatologist visits, Cardiologist visits, Surgeon visits, hospital tours, endless hours reading and researching about his condition, and so on.  In the clip, Morpheus goes on to give Neo a choice - take the red pill and "see how deep the rabbit hold goes" or take the blue pill and essentially go back to his old life.  Well, we wouldn't have much of a movie if he took the blue pill :P

For us, our "red pill" was when we learned our baby had a rare, complex heart defect which would require multiple open heart surgeries and a lifetime of treatment, and even with that, the doctors did not know what his long term prognosis would be.  Of course we did not choose this for our son, but it had the same effect as the pill in the movie- it opened our eyes to a new world - one that was always around us, but we never noticed.  Our son's diagnosis caused us to see that congenital heart defects (CHDs) are the number one birth defect, impacting approximately 1% of all births, yet is grossly underfunded.  It helped us learn that twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet pediatric cancer research funding is five times higher than CHD funding.

At the same time, Brent's diagnosis has introduced us to a community of families and supporters that we would likely have never met otherwise.  Heart families and heart warriors (the name we give to our heart kids!) are some of the strongest, caring, and supportive people you will ever meet.  His diagnosis has given us perspective and patience we didn't have before.  Think of a time you saw a news story or something happened that made you hug your kids a little tighter, or spend a little more time with them randomly in the moment.  Now imagine something happening to you that gave you that feeling, that perspective permanently for the rest of your life...

Even though we don't have the option of choosing the blue pill like Neo did in the movie, I can't say that I would even if I could.  That would be taking us back to a life without our son.  And although we don't know how deep the rabbit hole goes or what exactly or new reality will eventually end up looking like, the baby shower reminded us that Brent's life and our new normal our things worth taking time out to celebrate.

The Matrix - The Red or Blue Pill?

Our First Fundraisers

David, Grace, and Agnes

Yesterday was a very blessed day.  The weather was very comfortable and cool on Friday and we had a large turnout for our garage sale/fundraiser and sold many items.  The second day of the garage sale we didn’t have as large a turnout, but we had people who donated to Brent’s surgeries, which really touched our hearts!  Some people in our neighborhood saw the sign and just walked up and gave us a donation, which is a testament to the generous people in Wylie.  We were able to raise around $500 the first day and $200 the second day, and we are still planning on selling more items to raise even more money for the unexpected cost of Brent’s life-saving surgeries.  Dave’s sister, Tosha, is also holding a dinner/Bingo fundraiser at the Olive Garden in Florida, and we are thankful for her taking the initiative to do this on our behalf.  I am so blessed to have such a wonderful sister-in-law.  I am also blessed with my other wonderful sister-in-law, Agnes, who helped me organize and run our garage sale, and I also could not have done this without donations from our church friends: Kristin, Jeanette, Jennifer, and Agnes’s coworkers from the Olive Garden in Plano.  There is an old proverb that says "Many hands make light work".  This weekend was definitely evidence of how the generosity and kindness of many - coming together in many different ways - can help lighten the burden of those in need, and we will certainly be paying it forward.

During our garage sale, we met some people with sweet special needs children, and one of our neighbors also told us of another heart family that lived in the neighborhood.  We were able to meet them and were encouraged by the story of their daughter who actually just had the Glenn open heart surgery done and is doing well.  It is amazing who God brings into our lives, especially at this time of need because when we first found out about our baby’s diagnosis, we felt very much alone.  We didn’t feel that many people we told understood the gravity of having such a complex heart defect.  We didn’t know ourselves (until our son’s diagnosis) that congenital heart defects (CHD) kill twice as many children as all forms of childhood cancers combined.  Without these life-saving surgeries, most babies with a single working heart ventricle will not live.  Not too many years ago, parents of children born with this condition were simply offered "comfort care".  So, it is comforting to talk with someone who understands the gravity of the situation and who can relate to our journey.

We hope with our son’s diagnosis that we can also help to spread awareness of congenital heart defects.  When we first started this process, I could not help but think, “Why us?  Why does my family and my child have to go through this?”  But then I would turn it around and ask, “Why not us?” and see that we have a lot to be thankful for.  This is our special journey that we are on - one that only my husband and I and our children will experience together.  I use the word "special" alot-it's in the title of Brent's blog.  The word "special" to me is a term of endearment-something that is precious.  Despite the hardship, God cares for us, and we are special.  My son is special.  I was thinking of a verse to go with how we think of Brent and his condition, and Psalm 139:14 came to mind.  “I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.”  God made each of us special - special hearts and all!

Grace