Let it hurt. Let it bleed. Let it heal. And let it go.
When Roy and I first found out that we were pregnant, we were filled with an amazing amount of joy and excitement. It was one year almost exactly since we had miscarried our first pregnancy, so we were weary of getting our hopes up. Once we reached the first trimester, however, we were in the full swing of baby fever.
Fast forward to our 20 week ultrasound. Roy was 100% sure it was a boy, while I was 100% sure it was a girl from the minute I read “PREGNANT” on the home pregnancy test. We had already decided how this little one’s life would be – from its gender to its favorite sports and hobbies. After revealing it was a girl, the ultrasound tech hovered over the baby’s heart for what felt like an hour. We knew this was not right, and our suspicions were verified when we were told the doctor would have to speak with us in a separate room.
Frightened, we walked into the small conference room to meet the doctor, who told us our child had a complex congenital heart defect (CHD). There it was. The deviation from our plan, our dreams, our child’s future. Every minute since then has presented us with something different than what we thought – cath procedures, open heart surgeries, pacemakers.
Deviation. It shakes your world and leaves you breathless at points. Then, the chronic “what-if’s” start to accumulate in your mind. What if we would have done something different during pregnancy? What if we would have stayed in St. Louis? What if we would have elected a different surgery or known about that second hole in the heart? This chronic second guessing can drive a person mad.
Our most recent deviation from our plan is in regards to the pacemaker. The surgeons, doctors, and EKG specialists came by the room during rounds this morning to talk about Reiss’ heart and if it was conducting as it should. They turned the pacemaker basically off and we watched. Some children are completely dependent on a pacemaker to live. Turns out, Reiss is not one of those children. Her underlying ventricular escape rhythm is high – somewhere in the 70’s. What is the significance of this? If her pacemaker fails in the hospital, she will not go into complete heart block and require an emergency OR visit. She would feel tired, but not failing.
Additionally, they looked at the voltage. The baseline was 3.5 yesterday. Today, it was 5, so they set the pacemaker voltage to 10. This will help keep the leads sending current to the heart so that the pacemaker will continue to track the ventricles to pump.
The issue is not that her atria and ventricles can’t conduct – it is that they cannot conduct in sync with each other. The communication between the two is just not there. The teams will continue to check to see if the chambers are communicating with each other through Wednesday evening. At that point, they will make a decision on whether she needs to go back into the OR for a pacemaker to be placed.
The pacemaker is a deviation to our plan. So, what do we do when our reality is different that what we had dreamt the days, or even years, before? I read this quote online one night this week and it made a mark on my heart.
“Occasionally, weep deeply over the life you hoped would be, grieve the losses, then wash your face, trust God, and embrace the life you have.” – John Piper
As we sit and mourn the life we do not have or the life we wanted for our child, we are blind. Blind to the life we DO have, the one sitting in front of our face waiting to be scooped up, cultivated, lived. We must let it go, be courageous and realize that sometimes when things are falling apart they may actually be falling into place.
An interesting point was discussed during our visit with the EKG specialists this morning – stats about Reiss’ CHD and the likelihood of having a pacemaker in general. Turns out, her defect, where the ventricles are inverted, has one of the highest probabilities for heart block out of all CHDs. In fact, 5% of children born with some variation of congenitally corrected transposition will need a pacemaker at birth. Each subsequent year, the probability increases by 2%. Therefore, Reiss has an 11% chance of having one just because of her anatomy as of today.
What we saw as a deviation to our plan has been a part of God’s plan all along. He is the one who led us to get a second opinion, who aided in the cancellation of her Fontan in St Louis, led us to the scheduling of the consult at Texas Children’s. He has brought us here to create a new heart, a new life for Reiss. We need to just let it go and give it up to Him. For He is creating something new. And it has already begun.