Sunday, August 26, 2012

Congenital Heart Failure

Not the words you want to hear when you take your 2-month old baby in for a simple check up but that's what happened when I took Zach in for his well-child visit at the end of June.  At 2 months old, Zach was only weighing in at 8lb 8oz and was deemed "failure to thrive."  The dr. then listened to his heart and found a distinct heart murmur.  We were sent to UAB the next day to see a Pediatric Cardiologist who would be able to more precisely determine the exact problem and give options for treatment.

At the cardiologist appointment, it was discovered that Zachary suffered from congenital heart failure because of a rather large and unusual shaped hole in his heart between the ventricles allowing oxygenated blood to travel back up to the lungs rather than out through the body.  Essentially, Zach wasn't gaining weight because his heart was working overtime just to pump blood to maintain organ function and such and his lungs were expanded and surrounded with a lot of fluid because of all the extra blood being pumped to them again.

We were given heart medicines and 2 weeks before the next checkup at which point open-heart surgery was to be scheduled.  The 2 week window was an attempt to get Zach to gain as much weight as possible before performing such a significant surgery on such a small baby.  Two weeks went by relentlessly slow, but when they finally did, we were surprised to learn that not only had Zach NOT gained weight, he'd lost weight.  Consequently, he was admitted to the hospital right away.  We were sent home to pack a bag and find a babysitter for the boys since Carl was out of town until the following day.

Back at the hospital, Zach and I settled in to our new temporary life.  A feeding tube was put in through the nose all the way to his stomach.  The tube was then hooked up to a continuous pump sending formula to his tummy.

After 5 days of "fattening" - Zach weighed in at 8lb 4oz when we were admitted and post-fattening he was up to 8lb 13oz. - he was sent in for surgery.  My mom was able to fly in the night before so she could stay with the boys while Carl and I spent the night with Zach in the hospital.  It was hard to let him go off to surgery without us but we really felt confident (thanks to all the prayers from family and friends) that everything would go well.

After a run on the bypass machine, open-heart surgery to correct a hole between the ventricles and a hole in the atrial wall, a second run on the bypass machine so that an extra stitch or two could be placed to fix a residual leak on the patch of the VSD, and a long 5 1/2 hours for us, we were finally let in to see Zach in the pediatric cardiology ICU.  He looked horrible and I cried for the first time when I saw him - red, swollen, and connected to a whole host of machines and tubes and lines keeping him alive and monitoring his progress.  The first day, after surgery, he was in a single ICU room with 2 nurses dedicated just to him.  He had a breathing tube, which he extubated too early and they had to put back in which caused a smidgin of panic for me during the 5 minutes he was turning blue and they were calling for the doctor and he was suddenly surrounded by about 6-7 medical people.  He also had an arterial line for drawing blood and a line in his groin for administering medicines.  He had a chest tube draining internal bleeding, a heart monitor, pulse/oxygen monitor, and a blood pressure cuff/monitor.

We couldn't spend the night in the ICU so we went home and I came back the next day while Carl was at work (he's not so great with hospitals and IVs and all that stuff).  I couldn't believe how much better he looked the next morning.  He was clearly still swollen and pretty out of it but his coloring wasn't so red and he'd already been disconnected from several things including the breathing tube (he was put on oxygen until his levels rose but at least he didn't have a tube down his throat.

If Day 2 was good, Day 3 was incredible.  He looked almost normal, minus the large scar down his chest, and the still i-don't-feel-great-eyes.  I couldn't have been happier sitting there all day with him hugging, cuddling, and rocking my baby.  And on Day 3 we finally moved from ICU back to the regular Pediatric Cardiology floor!  He was back in his hospital crib/jail and I was back in the uncomfortable hospital bed.

He continued to make gradual improvements and I could have cried I was so happy when he was finally down to just the heart monitor.  On Day 6 he was finally released from the hospital and in MUCH better spirits.

My mom and the boys came to visit us every day or night.  Carl and I took turns staying with Zach at night and trying desperately to get him to eat from a bottle so they wouldn't put the feeding tube back in.  We met with success finally towards the end of our stay and now are thrilled to report that the hospital is just a memory.
We go in for regular check-ups with the cardiologist and Zach will continue to have annual check-ups for the rest of his life.  We also go in for weight checks with the pediatrician every 10 days to 2 weeks.  Thankfully, it's anticipated that Zachary will have no further complications from his heart defect which was patched and repaired.  We couldn't be happier!


Tressa said...

We are so glad that all is going well and continue to pray that it continues. He's such a cutie.

Natalie said...

What a sweetheart! Emphasis on the HEART! I'm so glad things turned out well, my heart ached as I saw the photos of zach hooked up to so many tubes. May his recovery continue well. I'm sorry you and Carl had to go through such a hard thing!

Melissa said...

What an amazing baby you have, Kristen. Seeing him hooked up to so many tubes and monitors made me wish that I could've been there with you during that time. What a scary time that must've been for you. I'm so glad he is recovering well. It's amazing what a couple of weeks and medical intervention can do. I'm so glad Heavenly Father has heard and answered the prayers of many in behalf of little Zach. I wish you lived closer. I miss you so much! Love ya!

Dyanna Stephens said...

Wow Kristen. That is a lot to take in. It made me cry. I am so happy he is doing a ton better. You and Carl are so strong to have been able to hold it together through this.