The Heart of the Matter
Many of you don't know that I had postpartum depression and anxiety with Cecily. From my failed birth plan and coping with complicated C-section recovery, and the constant pull of this little baby that needed EVERYTHING from me, and not knowing what the hell I was doing for the first time in a long time, it wreaked havoc on my life. With Conrad, it was a planned C-section, because I already knew what to expect, and feeling prepared has always been most of my battle. He was born, and despite a painful latch, everything was perfect. Our family was complete, and I was on cloud nine. Even being at home with little sleep and a stir crazy toddler, we knew what to do and we were prepared, and everything was still perfect. Fast forward to his diagnosis, and our world came crashing down. What we had was an illusion. Even after we had his diagnosis, and we knew the basic facts and what to expect, we were still in denial. But reality came and slapped us in the face when our beautiful baby boy declined. He could no longer nurse for a full feed. He slept most of the time, was extremely difficult to wake, and was cold to the touch. My child was dying, and there was nothing I could do. THANK GOD Amanda was visiting when heart failure set in, and we sped to the hospital with Conrad in my lap. We didn't even think of Cecily in that moment. Once we were admitted to the PICU, we both crashed from the exhaustion of the previous week. We knew there was nothing more our parental instincts could offer, that science would have to take over. The hours, days, and weeks that followed are mostly a blur, but certain moments will stay with me well into old age.
For those not completely versed in our story, here is an abbreviated timeline:
- 1/18/19: Born 3 days before scheduled C section. Discharged a day early at our request. We are elated to be home as a family of four.
- 1/22/19: First pediatrician's appointment reveals a heart murmur
- 1/28/19: Echocardiogram and labs drawn. Conrad is diagnosed with Coarctation of the Aorta, Atrial Septal Defect, Ventricular Septal Defect, Bicuspid Aortic Valve, and Patent Foramen Ovale. Surgery is when, not if.
- 1/29-31: Conrad has increasingly less energy to feed. We begin syringing milliliters of breast milk. We count wet diapers. We call about dehydration. Amanda comes to visit.
- 2/1/19: Just after midnight, Conrad begins to vomit. We wake Amanda, who tells us to GO NOW to the ER. Admitted to the PICU and then medical transfer to St. Louis Children's Hospital.
- 2/2-2/5: Pre-operative testing. Waivers. Pumping. Walking the halls. Blake goes back and forth between STL and Litchfield to relieve his family of Cecily's care.
- 2/6/19: Surgery day. Conrad is taken back, and we wait for updates. Blake leaves to collect Cecily. Finally in the evening Conrad is out of surgery and back in a CICU room. When I see him, alone with a nurse, I weep. I don't even recognize my child. My sister flies in from Seattle to help with Cecily. Blake finally comes, and we cry together.
- 2/7-14: Days up and days down. Trial and error with weaning off drugs. Trying to gain weight and heal.
- 2/15/19: We are finally discharged after what feels like months.
- 2/16-3/6: Once home, feeding comes to a halt. We go to the pediatrician several times a week for weight checks. We are referred to a speech language pathologist, and she suspects vocal cord paralysis. The ENT confirms on the same day Conrad has his tongue tie clipped. We start new bottles and thickener.
- 3/7/20: Conrad finally gains weight and thrives. He is happy, sleeps well, and meets milestones on time, with the exception of speech. ENT dismisses us since his paralyzed cord is stable. Conrad's speech EXPLODES during the pandemic, and he is dismissed from speech therapy as well.
- 1/2021: His 6 month cardiology appointment in January brings news of a narrowing aortic valve, which we will continue to monitor.
- 7/17/21: Conrad's aortic valve continues to narrow slightly, but is overall stable, and we graduate to the solid gold standard of annual appointments.
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