Thursday, April 25, 2013

Johnny "Wait and See" No More?

"In Him our hearts rejoice,
for we trust in His holy name.
                                                                                                         -Psalm 33:21       

About a year ago we began our initial round of visits to Dr. Norton that come with a positive pregnancy test. I had already had one ultrasound at this point and would receive that fateful 12 week visit in mid May. I would hold my breath as the ultrasound tech searched for the heartbeat, waiting to hear that confirmation that my child was alive. Each ultrasound with each pregnancy went like this. Even if I felt movement every hour of every day, I would still lay with sweaty palms, not breathing until I saw the flutter of a heart or heard that galloping beat. I looked at Johnny's heart at least once a month during his pregnancy. Once we were sent on to Fetal Cardiology, I learned his heart well, the flashes of bright light that indicated holes because blood was crossing over the septum (the wall between the two side of the heart), the thin wall to the top of the ventricles that they couldn't see well and weren't sure if they should label as a defect or not, his "perfect, textbook" aortic arch that the Cardiologists lingered over because it looked exactly as it should. I spent hours watching his heart beat and hours still praying that his heart would stay strong and would withstand whatever it needed to. We had prepared ourselves for surgery at this time. The doctors were all but sure (95%) that the thin wall in his ventricles was in fact a VSD (Ventricular Septum Defect- or a hole in the bottom two chambers of his heart) and that would need repair at about 6 months. As much as we were assured that this was an easy and common surgery, it worried us, all heart surgery is scary, especially for the mother to a small child. At 8 days old, I cradled his little head while the tech looked again to see what they might need to do on his heart. I stretched out his tiny arms while Matt pinned down his hips so we could get x-rays of his chest for the doctor to have the full spectrum of information he needed. It was hard and it was draining. As we were getting used to, we would have to wait and see. 

Today we received wonderful news. After an echo and a quick exam, we were given a resounding "Congratulations" from our doctor who all but cleared us from cardiologist appointments. At 8 days old, Johnny had 3 VSDs and now has only one remaining as the muscle wall has grown together and replaced those gaps with muscle wall. The remaining VSD is detectable by echo, but is very small and is only slightly audible. In fact, Dr. Wolfe let me listen to it, it barely made a swish sound as Johnny's little heart beat away (approximately 153 beats per minute). In addition, all babies are born with an ASD (atrial septum defect). Basically, when a baby is in the womb, they receive oxygen from the mother through the umbilical cord. Because their heart doesn't have to function normally, a hole is present between the left and right chambers. When the baby is born, a skin flap gets pulled in and closes over that hole (hopefully). Johnny technically had an ASD because all babies have ASDs when they are born, you just don't know about it because not all babies have echoes. So they have been monitoring his and there is still a small hole in that area, but Dr. Wolfe couldn't even hear it on the echo which means it should be gone soon. So we proceed like normal, no special instructions, and we can go back when Johnny is 5 to double check on everything.

Which means, in case you didn't see it up above, we have been cleared. We have been cleared. I cannot tell you how elated I am to type that, say it, and realize it. We have been in "Wait and See" mode with Johnny for almost a full year now. Over and over and over again we have been told "I don't know" from doctors, specialists, therapists, and others in the medical field. And I am ok with not knowing everything, but it was hard to always come away with several different scenarios of what may be going on. And I know that the doctors we saw were doing their best and I find little fault in our specialists, in fact I feel extraordinarily blessed with all of the doctors we have gotten into see. But now we can finally check something off of our medical list of "to dos". Instead of prepping him for heart surgery, we are filing away Dr. Wolfe's contact information to refer others who may need him. And while this is a huge relief, we have really been at peace with the last few appointments Johnny has had at various places because we have really had to give this over to God. The more we wanted answers, the less we got. And the more we have turned things over, the more resolution we have gotten. Like I said last week, God has a better story written for us than we do. He knows the end, from our perspective, things are still in the rough draft/editing mode so it seems kind of messy to us. While we don't expect everything to be this resolved (with any of our kids), it is kind of a welcome change. 

I will miss seeing pictures of that amazing little heart, but it is nice to have that worry gone too.


Kerri said...

Yay Johnny! That's amazing news! Maybe he could teach Jack a thing or two on how to close up some VSD's.

The Howards said...

I didn't know Jack had VSDs! What does your cardiologist say? Where are they in the Ventricle? Should they close up as he grows?