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