The Margins

As we hit week 32 of a pregnancy that by all accounts could have ended weeks ago, we are praising the Lord for His goodness and His grace. I am mostly thankful for you and your prayers, which I believe have made the biggest difference. We are thankful for the doctors, although by their own admission they have not been able to do much. Now that we are within shooting distance of a full term pregnancy, their attitudes are changing and we are starting to have discussions about what a delivery will look like.

While we are people of faith and our hope and trust is in the Lord, we have never taken an attitude of superiority towards the doctors and nurses (and other health care workers) because we know that one day we may be relying on their skills and wisdom to save our daughter’s life. So when the doctors talk to us, we listen while keeping in mind that there is a side of the story that they don’t know: what God is up to. This update is to let those of you who have asked and prayed know what the doctors are saying, but like me, feel free to Pray Big.

On Friday we had another checkup and consultation with our fifth cardiologist. I joked that we were running each of them off and now whoever draws the short straw gets stuck with us! The team also consisted of a NICU doctor, an MFM OB, a palliative care doctor, and a social worker. The social workers knows what resources might be available to us since we live three hours away and we might need places to stay, etc… Fortunately we have a good support system at home but we also have friends in Kansas City who have offered us places to stay (Dan and Paige, if you’re reading I hope those offers are still open!) should we need them.

According to the cardiologist, Penny’s heart condition is stable but not improved, and she still has hydrops. The complications with her heart mean that they will not intervene until thirty six weeks gestation because their intervention would probably only cause physical pain and suffering with almost no chance of success. The NICU doctor walked us through what would probably happen following delivery: with Penny’s low heart rate she will probably not be able to sustain oxygen levels in her body, which will necessitate a breathing tube. She will also need to have tubes inserted to drain the excess fluids. There will be an electrophysiology team nearby in case her heart needs to be paced immediately. While Katie is recovering in one room, Penny will be in an adjacent room with a sliding glass door and I can go back and forth between the rooms to check on both and give Katie updates. Penny may be in the hospital for months, meaning that Katie will pretty much be living in Kansas City and we will be navigating this challenge.

This is all very different from our other pregnancies where we got to hold our babies immediately. All of our babies slept in the same room with Katie and got lots of cuddles and contact. It’s hard to think about the tubes and machines and pain that Penny will have to endure from day one. Treatment for her is completely dependent upon how she responds and while the doctors won’t put odds on her survival, they are constantly communicating to us the complexity of her issues. If treatment fails, the hospital will help us navigate the Covid restrictions so that family can meet their sister and their grand daughter before her short race is run.

We are living in the margins, and so far Penny has beat the odds. At week 20 there was little hope that we would make it to week 32. At week 28 and the development of hydrops the doctors were expecting her to die. I am particularly thankful to the MFM doctor who recommended the medicine Katie has been taking and which seems to be having a marginal effect, which has been enough to keep her alive. The margins are so tight. I asked the NICU nurse if there were babies who could sustain their own oxygen levels even with a low heart rate, and she said that she had seen it in the sixties or seventies, but not the fifties. Maybe Penny will be the first.

I ask these types of questions because while it is their job to help us think through all the terrible things that might happen, I believe it is my job to help them think about all the good things that might happen. Even the miraculous things. I don’t want them sticking and cutting and prodding my daughter if they don’t have to. I remember our first baby’s scream of pain when they drew blood from her heel and I know that every daddy instinct I have will be to protect my child from pain. So I hope and pray and ask that Katie will get to hold Penny as she held our other kids, and that Penny will come home and meet her siblings who are busy preparing for her arrival. Lord willing there will be no more updates until week 36. Until then, we are living in the grace of God.