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