Heart

Love is not written on paper, for paper can be erased. Nor is it etched in stone, for stone can be broken. But it is inscribed on a heart and there it shall remain forever.

-Rumi

 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

-Philippians 4:7

One of the most beautiful sounds my ears have ever heard, is the heartbeat of the baby within my womb. I remember the first time I heard Madeleine’s heartbeat. I was taken off guard when my Doctor offered to listen for her heartbeat. I had never been pregnant before and thought that heartbeats could only be heard well into the pregnancy- not at 10 weeks! I awkwardly laid down on the crinkly paper and shifted my pants down to expose my invisible bump. My doctor traced the Doppler around my navel, searching for a beating rhythm other than my own. Suddenly,  it was audible.  145 beats a minute… it was her life, in audio.

The senses are brilliant at absorbing and communicating to the heart. Each ultrasound is a sensory overload to the eyes….a sneak-peek at the life within. Every movement tells the heart that this baby is coursing with life and movement. To watch my unborn child kick, wave her hands over her face and roll from side to side, is binge-worthy. Recently, my tummy became a playground in which each kick, poke and prod reminds me of the life within. I feel her dancing on my bladder to the rhythm of my heart. The audible sound of her heartbeat confirms to me that she is alive and that there are two hearts currently living in my body. All of these senses etch into my heart a love for this little one that will remain forever.

When our ultrasound revealed that our daughters heart may not be forming correctly, we were referred to the Pediatric Cardiology wing of the hospital for an echo cardiogram. Initially, they told us that there appeared to be a possible hole in the upper septum (dividing wall) of her heart (Atrial Septum Defect) which may or may not close after birth. They encouraged us by explaining that it was a non-emergent defect that could be repaired as far on in life as adulthood. It was best case scenario as far as congenital heart defects go.

On Monday, this past week, Russ and I went together for the echo. It was so nice to have Russ in the room. Our babies heart is only as big as a quarter at 24 weeks and to our untrained eyes, her heart appeared to be pumping and beating with 4 chambers quite beautifully. Magical really. We had been praying regularly and believing that all evidence of this defect would be erased and her heart would be perfect in this echo. Our own hearts were especially light because we had a good friend offer to look after Madeleine for the day. We kept joking that we were on a ‘hot date’! As we waited for the Doctor to review the results of the ultrasound, we took turns weighing ourselves and laughed together at our immediate resolve to eat salad for every meal. We reminisced technology and the advances we were blessed to have at our disposal.

When we finally sat with the doctor, we were like two teenage kids, footloose and fancy free….not prepared for what she had to say. She began by inquiring about our knowledge of the baby’s possible heart defect and then graciously she allowed me to describe in layman’s terms what we understood. She turned her computer screen toward us and typed in AVSD. I recognized the acronym from a Facebook group I’m in, where families of children with Down Syndrome and heart defects share their stories. I knew immediately, our little girls heart condition was worse than originally thought.

50% of children with Down Syndrome are born with congenital heart defects. Our baby is in that 50% and the structural deformations can be successfully repaired with open heart surgery between 4-6 months. I’ll save trying to describe the medical scenarios of this condition and allow the picture below and the Youtube clip to explain for me. In short, the middle wall dividing the right and left sides of the heart are open and cannot remain that way in order for our little girl to survive.

atrioventricular-septal-defect

 

We left the Pediatric Cardiology wing hand in hand, and as we walked past the large round windows painted with child-friendly images of turtles and butterflies, I could sense the weight of this news descending, replacing the lightheartedness of our date. As we navigated the hallways and elevators to make our way to the cafeteria, I told Russ that although I believe God can absolutely heal her heart, I have a strong conviction that God is perfectly ordering every element of this little life in order to show off His glory through her. I want to hold these two truths in each hand, believing that the supernatural is possible while being grateful for skilled surgeons and modern medicine. I want to trust that whether healing comes supernaturally or naturally via medicine, that Gods perfect plan is being worked in her. And also in us.

When we sat down for lunch, we talked about the surgery. It was in this conversation that we both watched each other fight to maintain socially acceptable emotions in the bustling room. And then, almost in tandem, we cried. Our fragile, precious daughter will have her sternum broken, her blood re-routed to bypass the heart, her septum repaired with gore-tex cloth and then her little body will be stitched closed. She will carry a lifelong scar and for 6 weeks, we will have to scoop her up, rather than lift her up from under her armpits, to allow her chest to heal. She will have tubes, wires and tape all over her tiny body. She will require morphine for the pain and will stay a week at the hospital if all goes well.

The internal drive of a father to protect his daughter from suffering must have felt like handcuffs to Russ. There will be nothing he can do to prevent these realities if her heart requires this surgery. He kept saying, “I just don’t want her to suffer”. A helpless feeling swept over my heart, resigning it to complete dependence on her Creator.

And then, came peace. A peace that guards the heart. Guards it from fear. A peace that conflicts with diagnosis. Peace that assures the heart it’s anchor is holding stronger than the might of the storm. In Christ alone. I believe this peace will guard our daughters heart.

If you are a prayerful person, we would be so grateful if you would join us to believe that God is restoring our daughters tiny-quarter-sized heart while she is in the womb. We have a follow up echo cardiogram early in May and we are trusting that God can do miracles between now and then. Thank you for standing with us.

Rachel