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

Support Groups and Other Stuff

It's me, Grace, again.  Because Double Inlet Left Ventricle (DILV) is very rare, Dave and I wanted to find people who have experienced or who have children with congenital heart defects (CHD).  Mended Little Hearts of Dallas was recommended to me by my friend Susanna as a place to find support, so it's good to know that there are functions we can attend to connect in person with parents of children with CHD; but I still had not connected with anyone with our child's particular heart anomaly.  I had started reading Fox News reporter Bret Baier's book, _Special Heart: A Journey of Faith, Hope, Courage, and Love_.  It could not have come at a more timely moment.  A few days after we received the diagnosis, someone posted about it on my Facebook wall.  It is a story about Bret's life, and I enjoyed reading about how he got a start in his career, his courtship with his now wife (the laundry story I found particularly amusing), but I couldn't wait to get to the chapter where I would find out more about his son's heart defect.  It was particularly devastating for Bret and his wife because they found out only after their child was delivered that their son, Paulie, had a heart anomaly.  I can't imagine delivering a baby and thinking everything is okay just to have a doctor tell me that my child would need open heart surgery to save his life.  We have the luxury of knowing ahead of time, thanks to a competent sonogram technician at the Plano Women's Healthcare at the Medical Center of Plano, and my obstretician, Dr. Heather Bellanger-Licker, who noticed something was wrong with our baby Brent's heart, so we have time to prepare ourselves mentally for what may lay ahead.  So, I am thankful for that.

But still, Paulie's heart anomaly was not exactly what our son, Brent, has.  Bret's son has Double Outlet Right Ventricle, and his son's blood was actually pumping in the wrong direction.  That in and of itself is scary to think the blood is flowing the wrong way, but I still wanted to find others whose child shared the same anomaly as our son Brent.  Brent has Double Inlet Left Ventricle, transposition of the great artieries (TGA), and ventricular septal defect (VSD).

Yesterday, David found a closed group on Facebook called "Children With Congenital Heart Defects."  There are more than 3,000 members, and I have already met several parents whose children have DILV!  I know I shouldn't be excited to find other parents whose children have this defect, but as one member said, "It's nice knowing that you're not alone."  There are other people out there that are going through the exact same thing.  Now I appreciate all my doctors - they have a vast knowledge about the diseases, surgeries, and procedures in their fields, and the ones that I have chosen are all board certified (I chose them carefully), but there is just something about listening to someone whose child has gone through this and connecting with them.  When these people tell their stories, I listen attentively because I know that they have experienced the surgeries and all the emotion firsthand.  Doctors are very good at hiding their emotions, although I have felt empathy from some of them already, which is much appreciated.

While in this group, I have learned a very important acronym.  I kept seeing people post about an 'OHS' and that their child has had several.  Wondering if my child would have to have that, I posted, "I'm sorry about my ignorance; I just found out my son had a CHD, DILV, and will have to have several surgeries.  I was wondering if my son will also have an 'OHS'.  Can you all tell me what that stands for?"  Boy, did I feel dumb when they told me it stood for 'open heart surgery'.  Yes, my son will be having at least two of those!


Now the other 'stuff' that is happening to me: spider veins and varicose veins.  I didn't have these with my three other pregnancies (although I developed some spider veins after my third child was born), but boy, does it hurt to feel the rush of blood flood down my right leg when I get up in the morning!  I finally got a prescription from my doctor for compression stockings and they cost a whopping $140.  "Insurance should cover some of that," the doctor said.  So, I'm going to call our insurance up to see how much they cover.  Meanwhile, my loving husband told me, after I had lamented to him about swimming with unsightly veins (I remedied that by purchasing surf capris, but ended up getting a weird-looking farmer's tan!), "Babe, we are getting older and our bodies are going to wear down.  But we will always love each other."  That is commitment, and I would rather have this kind of love than a fleeting, lustful love that only stays with good looks.  And this is why I love this man!  Dave is my rock, my constant companion, my lover, my researcher, my best support after leaning on God.  I am so thankful that Dave is the one going through this journey with me.

 

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By the way, ladies, if you are suffering from unsightly veins and would like to cover up when swimming, I purchased these surf capris here http://www.paddlesurfwarehouse.com/Roxy-Up-Wind-Neoprene-Capri-Pants-p/roxyupwindcapri.htm

Understanding Double Inlet Left Ventricle (DILV)

Double Inlet Left Ventricle Example

One of the difficult things to do since receiving Brent's diagnosis is explaining his condition in a way that people can grasp and make sense of.  We even continue to learn more about the condition ourselves, and are by no means doctors or experts.  Because there are at least 18 types of congenital heart defects, the mistake people often make is relating it to one they have heard about.  One of my prior posts contains a YouTube video explaining Double Inlet Left Ventricle (DILV) more from a medical perspective.  Once you have had a cardiologist walk you through your baby's defect, the video is very easy to follow.  Since our family and friends have not had that, this post is my attempt to try to explain the condition hopefully in a way that is easier for you to understand.

DILV is very, very rare.  It is one of the types of "single ventricle defects".  These are rare disorders affecting one lower chamber of the heart.  Overall, congenital heart defects occur in about 9 of ever 1,000 births.  DILV on the other hand occurs in 5-10 of every 100,000 live births.  So, if I'm doing my math right, using recent birth rates of about 3.9 million per year, that means around 39,000 babies will be born each year with some type of congenital heart defect, while only 200-400 of those babies will be born with DILV.

DILV currently cannot be "fixed".  When I explain to people that Brent will undergo multiple open heart surgeries along with, likely other heart surgeries, I often get the reply "Well, at least it's something they can fix".  I understand the sentiment the person is trying to convey, but DILV currently cannot be "fixed" - at least with today's medical technology.  The surgeries Brent will undergo are designed to offer what they call "palliative care".  The surgeries will help treat and relieve some of the symptoms of his condition, but they will not "fix" the underlying defect.

With these things in mind, I will try to explain his condition as best I can and to the degree I understand it currently.  The picture below is the best I have found that diagrams a normal heart versus a heart with DILV - the heart on the left is your heart if you have no defects.  The heart on the right is Brent's heart.  I will bullet point a few of the differences that are important to distinguish:

• First, notice that a normal heart has a "right" and "left" ventricle.  The right ventricle pumps your blue blood.  Brent did not develop this ventricle - well at least it is very small and what they call "hypoplastic".  It is not capable of performing it's intended function.
• Second, notice that a normal heart has a division between the right and left ventricle.  This keeps blue and red blood from mixing together in the heart.  Brent does not have this division.  This is what is called a "ventricular septal defect".  Some people have this defect without having DILV and, but itself, it is common and something that doctors can fix.  Brent has it in conjunction with his DILV and his blue and red blood will mix together.
• Third, notice in a normal heart that the pulmonary artery laps over the aorta.  In the DILV heart, positions of the great vessels are reversed.  This is called "transposition of the great arteries", and again, it is a defect that can occur by itself, absent of DILV, but in Brent's case, he has it in conjunction with his DILV.
• Last, notice in a normal heart the left ventricle is on the right side if you are facing the image and the right ventricle on the left side (they are actually on the right and left side of the actual body).  In DILV hearts, the ventricles are switched - Brent's left ventricle is actually on the right side of his body. 

This is all complicated and a little technical, but it's necessary to understand the following main points:

• Barring a complete miracle, Brent will only ever have 1 ventricle in his heart.  I've read people with this condition often describe it as having "half a heart".  Basically, this is a simplistic and easy way of helping people understand it.  He does not have 1 of the ventricles needed to pump the blue blood throughout his veins.  The surgeries he will have are designed to address that.
• The series of surgeries Brent will have will allow his blue blood to completely bypass his heart and drain/flow to his lungs directly.  Until then, his blue and red blood will mix together in his heart.  Some of the complications his heart condition could create for him are: blue skin, failure to gain weight normally, trouble breathing, swollen legs or abdomen, pale skin, poor feeding, sweating, fast heartbeat, heart murmur, fluid buildup around the lungs, heart failure.
• The surgeries invented to treat this came about in the late 70s, early 80s.  As a result, a lot is still unknown/uncertain regarding things like life expectancy, survival rates, complications, etc.  See my wife's recent post here.

I hope this helps our family and friends understand the condition a little better - and anyone stumbling across the blog for that matter.  We feel very good about the care Brent will be receiving, and have some good news to share on that front in my next post.  Until then, we appreciate all the prayers and well wishes that are being sent our way!  Keep them coming :)

David