Thunder Storms the Night Before

I've heard a story about the ancient Israelites that when God gave the Torah on Mount Sinai, when He spoke, all that the Children of Israel heard was thunder. When I am in the midst of a good thunder storm, I think of this story, and wonder what God has to say to the world today.

It's not so scary when you think of thunder like that. And surgery isn't so scary either.

My children and I discussed the heart today, and I realized that to understand a broken heart, it's good to understand a working heart. We found this video on You Tube that explains how a working heart works. (Here is the link that explainsTetralogy of Fallot and here is the link for the melody valve.) Tomorrow we must be at the hospital bright and early!

Good night, and thanks for all the prayers and love. We feel very supported!

On Heart Surgery

This is going to be quite a week for us. Once again, we are headed to the hospital with Daniel for a procedure.

Daniel was born with a number of disorders. He had surgery on his esophagus immediately after birth, lived in NBSCU (NewBorn Special Care Unit) for 5 weeks, and had open heart surgery at the age of three months. After his heart surgery, the cardiologists told us that eventually, maybe when he was as old as 5, maybe older, he would need future surgery.

So the future is here. Daniel needs surgery this summer to replace his valve.

The heart condition he was born with is called Tetralogy of Fallot. Cincinnati Children's Hospital has a nice explanation of the heart defect here.

Yale New Haven children's hospital has an incredible pediatric cardiology department. They have actually been on the cutting edge of new ideas and procedures. Instead of replacing the valve with open heart surgery, the doctors are reasonably certain it can be done via catheter. The valve is called a melody valve, click here for more info. There's a really nice animation which is essentially the explanation the doctor gave me during the pre-op appointment.

Recovery should be super quick. One night overnight in the hospital, then only a week or so of recovery. Open heart surgery generally would require a week or so in the hospital, and longer recovery.

Prayers are welcome. Prayer has kept Daniel through all his medical struggles since birth. Thanks for reading. I'll try to keep things up to date as the week goes by. Our appointment is for early morning July 3. Daniel should be home July 4. Then, he'll have the summer to be a kid.

May it be so!

on The Day Before

Being a mom to a child with special physical needs, I've had to deal with many days before surgery. Having done this for almost TEN years now, my perspective is a little different.

Daniel was born with many medical issues, (more than most, less than some) causing him to have surgery the day he was born, live in NBCSU (New Born Special Care Unit) for 5 weeks, and have heart surgery at 3 months old.  One of his many challenges has been eating enough calories for him to grow at a consistent rate. On top of that, Daniel has horrible acid reflux, because of his anatomy, and has been on Zantac and Prevacid since infancy.  Daniel was born small, but when he was around 4, his weight gain plateaued.  He wasn't eating enough to grow at all. So. We agreed with the doctors that the best way to force feed Daniel was to place a feeding tube into the stomach. 

This helped, but Daniel continued to struggle with serious reflux leading to vomiting, and aspiration pneumonia. For the past few years, Daniel has had a g-j tube, with which the formula gets dumped directly into the intestines, bypassing the stomach, and cutting down on reflux.  This has worked really well, but when the tube needs to be changed, Daniel has to go to the hospital and have it placed with an X-ray. This is a pain, expensive, and exposes Daniel to quite a bit of radiology.  The surgery tomorrow (at 2 pm) is to place a j-tube surgically into the intestines.

So many of our day befores have been full of fear, full of anticipation, being thrust into a new world of the hospital.  So many of our day befores have diapers, strollers, and nursing little siblings. This day before feels different. It's a surgery, for sure, but we're somewhat at home in the hospital. The little ones are safe with Grandma and Grandpa , Daniel is old enough to entertain himself, and even some of the unknowns sound vaguely familiar to me.

Thanks for all your thoughts and prayers, for tomorrow, and through the past years. We cherish the love you all send! And we'll let you know how it goes.