Just Let it Go

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.

something new2

6 thoughts on “Just Let it Go

  1. Wonderful, wise words. I realize they are much easier to say, than to do, but God is so trustworthy! Continuing to pray for your precious, brave family and wisdom for the doctors.

  2. Love you all to pieces! Reiss is so lucky to have you and Roy as parents! All three of you have endured so much, and you continue to find the positive path forward! All I can say, is you are amazing! ❀

  3. Everyone of you are amazing…..everyone of you are brave….everyone of you are an incredible inspiration to all of us! You all are all HEART and held together by a love that is a love beyond all others! Love to sweet baby Reiss, Roy and to you, Sara. Thanks for having the ability to write the way you do so that we can follow and share this incredible journey with your family. πŸ™πŸΌπŸ’ž

  4. What a beautiful and inspiring post! I have a 20 yr old daughter with Down Syndrome who had open heart surgery as an infant. You are so wise and have a wonderful gift for writing. It is true, you can grief over the loss of what you were expecting or embrace the life God gave you and enjoy the child you have. I am praying for Reiss, Roy and you.

  5. I really do love this post. Sara and Roy, you were chosen by God to be the parents of your precious little Reiss. He knew you would love her and care for her unconditionally. He knew that your faith would be tested and that you would draw strength from Him together as one. By sharing your experiences and your story with others, you are encouraging others to trust in Him and his will. You are giving glory to our Father in Heaven in all things . This is something we all should do. I know from experience how difficult it is to let go and let God do his thing, whatever it may be. But I also know the peace that the prayers of the faithful can bring during a trial. Therefore, I pray that everyone lifts your family in prayer to the One who holds tomorrow in His hands. I pray for healing, guidance, laughter and a beautiful future filled with the love that is so evident in your sweet family. I pray for a lifetime of joy and for many others to learn of His great love through the talent He has given you as a writer. I’m thankful He blessed you and Roy with Reiss. But I’m even more thankful He blessed Reiss with Sara and Roy Kaderly as her mommy and daddy. Blessings to you all.

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