Yesterday morning we returned to Children’s Mercy Hospital in Kansas City. It had been four weeks since our previous visit but in the mean time Katie had seen her OB and we had another echocardiogram at the local clinic. Penny has been gaining weight, growing, and moving around a lot. So we had a lot of hope in our hearts for the visit to KC. I had even wondered if we might witness a miracle and be told that her heart block had cleared.
Our first appointment was for an ultrasound with the maternal fetal medicine folks at 9AM, so we decided to spend the night in KC and celebrate Katie’s birthday and Valentine’s day a little early. After an evening of fondue at the melting pot and exploring the Ikea in Kansas City – where Katie and I not only got along but brought back some furniture for the church, which we assembled this morning in record time and without arguing, thank you very much – we had a bit of a restless night and early morning thanks to back pain and pregnancy insomnia. The silver lining was that over the course of the day I manged to go to the Roasterie three times.
Ikea accomplished, marriage intact!
In that first ultrasound we got some great pictures of Penny as she yawned for us, sucked her thumb, and performed a lot of acrobatics. She may be the most active of all of our babies, so that’s encouraging. Dr. Mundy, the MFM doctor, came in to tell us that there are some new developments that are not good. Penny now has hydrops, a condition where fluid is building up in two or more compartments of her body. Additionally, they observed some thickening of her heart muscles.
As we went into the echocardiogram room, I had already determined not to try and watch the whole thing, so I read some CS Lewis and got some work done while Katie fell asleep on the chair (thank you, Rita, for being so gentle and allowing her to get some rest!). Penny does not like to cooperate with these exams, so Rita got as much information as she could and then disappeared. We waited a long time. Maybe an hour. We learned that waiting is bad – it probably means a group of doctors are conferencing. When they came in, we met our third cardiologist as well as an electrophysiologist. There were two others present around the little table in our room, but it was the first time we had an all female team. Which, to be honest, was not good. Everyone was very kind and everyone felt the need to tell us how sorry they were. “Don’t be sorry, yet.” I replied. Later I would have to say, “You have no reason to be sorry or apologize, you have done nothing wrong.” It seemed like when the meeting started they were saying that they needed to know what we wanted, as if they needed us to make some kind of decision. But about 1/3 of the way into the hour long meeting, I realized that they weren’t actually telling us anything new. Katie realized that soon thereafter and asked, “So do you guys want us to decide something?” to which they all said no. Basically, they just wanted us to know that things are not going well. I probably came as close to getting frustrated as I have throughout this experience, but my internal compass told me that response was not helpful.
Then we sat there for a while longer, maybe another thirty or forty minutes, and waited for another group of doctors to come in. Who again, wanted to know what we wanted. At that point, I wanted a multiple choice test instead of an essay question. The answer we gave them that seemed to help them move on is that we want to make the best decision for Penny possible, that we would rather take the risk of her passing away in utero then to prematurely delivery her just so we could spend time with her, that we understood that post delivery interventions may not be possible, and that we do not want our daughter hooked up indefinitely to tubes and machines and subjected to unnecessary painful procedures that have slim to no chance of success. I found myself saying out loud all the things that eight weeks ago I hoped I would never have to say. Parents make choices every day that impact their children, but never have I had to make decisions of this magnitude. While hard to say, they were relatively simple to make: we cannot control things outside of our control. We cannot gratify our own emotional needs at the expense of making responsible decisions for Penny. We have been entrusted with the life of another for a season and while we do not know how long that season will be, we will do our best and leave the rest to God.
We did get a prescription for some medicine that may increase Penny’s heart rate and thus either keep at bay the progression of hydrops or, in the best case scenario, improve her condition. The side effect is that it will increase Katie’s heart rate and may increase her insomnia or make her jittery or anxious. We will return to KC in a week to see if this has been effective, and at that point we may have to make more – harder – decisions. We are living week to week at this point.
So we started the day with hope, and our hope had to be deferred to another day. But we still have hope. It has not been destroyed. I have hope because Penny loves to move and kick, which is a good sign. The other day she kicked my hand and I felt her strength. I have hope because God loves a last minutes rescue: He doesn’t always part the waters until Pharaoh’s army is pressing in or show up until His servants are cast into the fiery furnace. The NICU doctor told us that she would consider it a miracle if Penny came to full term. Of all the prayers that God has ever answered for me, this would by far be the most clear example of His intervention in the natural affairs of man, and I would love to witness it.
In the Christian life, hope often has to be deferred. The hope of the disciples that Jesus would rescue Israel had to be deferred until after the crucifixion. The hope Abraham had for an heir had to be deferred until after Sarah had passed the point where she could conceive. Joseph’s hope that his family would one day possess the land of Canaan had to be deferred until after his death, when only his bones were left to grace the Promised Land. Our hope cannot be destroyed, even by death, for we serve a God who knows His way out of the grave. Hope may be deferred, but never destroyed
Nathan Writes 