So There, Now You Know As Much As Me

7 days following the initial news of Penny’s heart issues, we left Springfield at 7AM to head to Children’s Mercy Hospital (CMH) in Kansas City. Our first appointment was at 11AM but with a solid schedule ahead of us we wanted to get a bite to eat, which took us to Panera. Being unfamiliar with Kansas City, I relied on navigation to get to CMH from there, which wound us through snow dusted streets and quaint neighborhoods until, like an apparition, the hospital materialized and we were plunging into the bowels of a parking garage.

At the front entry desk, we were not just directed but guided to the 3rd floor Fetal Health Clinic by a volunteer, and throughout the rest of the day we received the same personal care from every person we met. Pictures of healthy children adorned brightly colored corridors while giant spinning sculptures hovered above. The smell of Roasterie Coffee and the rainbow lights across the ceiling of the gift shop provided texture to a sterile environment. Later I would discover a chapel where I could sit and, quite frankly, cry for a while – alone with my God.

At the end of the day, it is a hospital. The human touches were all appreciated and the kindness of strangers memorable. But soon the testing commenced: an almost 2 hour marathon ultrasound that began with Rita and concluded with Matt, a cardiologist. As I watcher her little heart beat, I couldn’t help but marvel that every human being is kept alive by that little organ. It’s no wonder that we speak of the heart of the matter, or the saintliness or wickedness of an individuals heart.

Instead of an improvement in her heart functions, we learned that Penny’s heart abnormality is more complex than atrioventricular canal defect, although that diagnosis still applies. Her heart falls into the paradigm of heterotaxy, a condition wherein certain internal organs don’t demonstrate the “left side” and “ride side” that the human anatomy requires. We were happy to learn later than this condition is not represented in other internal organs, meaning she is developing normally. However, the primary concern is that the upper and lower chambers of her heart are not communicating, which means they are not beating in sync. The lower chamber, which does the heavy lifting of moving blood through the body, is only beating at just below 50 beats per minute, less than half of what is considered normal. Since her heart is the main health concern, this consultation with the cardiologist was particularly brutal.

Following these, Katie was taken in for a standard OB ultrasound and I was released to find food, coffee, and have a good cry in the chapel. They weren’t done poking and prodding Katie, so she did not get that reprieve. After that we spoke to a doctor from maternal fetal medicine, who helped us get a bigger picture of Penny’s health, and then a quick consultation with an anesthesiologist. Our final meeting of the day was with “the team”. Our team. All of this scheduling and all of the consultations were arranged by Bryan, a Fetal Cardiology Nurse Coordinator, who had been our point of contact since being referred to CMH. He was a wonderful asset throughout the day and we particularly appreciated his efforts.

So our hospital day concluded with a meeting with 10 individuals – 7 in person and 3 on screens. There was a social worker, neonatal cardiac specialists, palliative care nurses, a geneticist…you get it. They were all very kind and supportive. The end result of the day are as follows. Penny’s heart rate is dangerously slow and at some point, may not be sufficient to keep her alive in utero. She’ll be monitored frequently for signs that her heart is giving out at which point she will have to be delivered. The closer she gets to full term the better for her. We are at 22 weeks and I think everyone will be pretty happy if we get to 33, although I’m hopeful for 34 or 36. At birth she will need – if not immediately, very quickly – a pacemaker to get her heart beating correctly. She will probably have to stay in the hospital for at least a month after she is born. We have not even begun to look beyond that to the potential surgeries she will need to correct the other abnormalities in her heart.

There are so many potential outcomes at this point that we can’t quite bring the situation into focus. Yesterday was a roller coaster ride of emotions. I woke up in the middle of the night thinking about all the different scenarios in which we could be parted from our daughter. I rose this morning confident that she is strong and she will live a glorious life. What will be our story? We know that only one outcome will come to pass, and that is what God has ordained. His is the hand holding the quill that writes our story…Penny’s story. And it is a hand both mighty to save and gentle enough to wipe the tears from every eye.

How are we doing? We are not crushed. There was laughter yesterday mingled with the tears. Katie and I spent almost six hours in the car together – talking, listening to music, and reflecting. I don’t think we are in denial. We are not hopeless. We told the doctors that we know Penny may die, but we do not live in fear of death. We thank you for your prayers and ask that you would continue praying for Penny. Pray that her heart heals. Pray that she can come to full term. Pray for a miracle. I seem to be having a hard time asking God for anything right now – I just know that I trust Him. So pray in my place, and pray big.

What shall we then say to these things? If God be for us, who can be against us? He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things? Who shall lay any thing to the charge of God’s elect? It is God that justifieth. Who is he that condemneth? It is Christ that died, yea rather, that is risen again, who is even at the right hand of God, who also maketh intercession for us. Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are accounted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

(Rom 8:31-39)