Johnny (12/13/2004)

What a long road this has been; challenging, at times heart- wrenching, but I can easily say that Johnny is a walking (almost 9 steps at a time now!) miracle!

Johnny is my second child. I had a relatively uneventful pregnancy. Other than having to cope with gestational diabetes, which I was able to control by watching my sucrose/carb intake, I just waited for the day that I could meet my second son!

Johnny was born weighing in at 9 pounds 3 ounces, and his Apgar scores were 9's across the board. We were blesses and thrilled to have such a big, beautiful baby boy! Three days later, all that seemed like a distant memory as my husband and I were swept into remote scary waters. I was pushing and pushing to go home on that third day; Johnny was a little jaundiced, so the nurse talked me into staying one more night. That alone probably saved Johnny's life.

At midnight, after I fed Johnny (this had its own challenges-- finding out that his heart wasn't working right explains a lot), the nurse took him back to weigh him. I had turned off all the lights in my room, so I didn't see just how blue Johnny had become! His oxygen sats were 39! He was rushed to the NICU, and the diagnosis came hours later--long after I called my husband hysterically at home. The pediatric cardiologist came to our room and didn't mince words "He needs surgery, he needs it in the next few days, or he is going to die." How does a parent prepare for that?

Johnny was flown by air ambulance a few hours later up to Children's Hospital Los Angeles, where miracle worker Dr. Sintek performed the Arterial Switch, and patched up the holes, when Johnny was a week old!

Johnny was in the hospital for 2 weeks, and hasn't looked back since. He is a healthy and thriving 14 month old that eats whatever isn't nailed down! He suffers from a hiatal hernia that will have to be prepared some time this year, but after open heart surgery, that little ole' procedure's going to be a walk in the park!

Just goes to show you--God and Modern Medicine work miracles!

February 21, 2004 Update

Johnny went in for his annual cardiology visit on January 29, 2004, and unfortunately the stenosis has basically doubled--it has gone from 20% gradient to 39% in less than a year. That was a bit difficult to digest, especially in light of the fact that Johnny seems to be thriving in every aspect of his life. I have never met a person with as much zest for living as this little boy has. From eating an ice cream cone, to toddling after his big brother as fast as his chubby legs will carry him-everything he does he does with such gusto that you would never suspect that he has a health issue that keeps his dad and I on constant look-out.

We go back for yet another echo in July 2004, where we will discuss the balloon cath as our first option, since it's such a less-invasive procedure. Our pediatric cardiologist, Dr. Weiner is so amazing?he is always optimistic, yet realistic, and has always treated Johnny with the utmost respect and tender care. He has cautioned us that Johnny is not the ideal candidate for the balloon cath due to the reason and location of the stenosis (it is located at the suture site where his pulmonary artery was re-attached).

Having said that, Dr. Weiner still wants to go the less-invasive route first (thank you!). Open-heart surgery to remove the scar tissue is our next option.

Until then, we live each day to the fullest, and Johnny never ceases to amaze us with his tender love (he's just figured out how to blow kisses!), his amazing sense of humor, and his incredible zest for life!

December 14, 2004 Update

Here is a recent picture of Johnny, taken 12/13/04. He is growing like a proverbial weed! He was diagnosed with autism (mild/moderate? back in September, and is enrolled in a therapy program 4 days a week. We are already seeing improvement in his attempts to verbalize, and he is now starting to initiate play with his older brother. Very exciting!

Heart-wise, Johnny is holding his own. We don't go back to his cardiologist for his yearly work up until July 2005.

Merry Christmas and Happy New Year!!!!!