A Bend in the Road

We are now past a month since the boys were born. We were hoping that things would get a little smoother now, but that doesn’t seem to be the case. The good news is that both boys are growing quite a bit and looking more like normal babies every day.

Cyrus is a bit uncomfortable because he still needs air to be forced into his lungs, which unfortunately also expands his stomach. Other than that he’s healing well and getting noticeably stronger.

Arthur is also noticeably bigger and stronger than before, but a number of serious problems aren’t healing well for him. His extra artery that bypasses the lungs while the baby is in the womb is still not closing, leading to inefficient breathing. Adding to that, his lungs themselves are in really bad shape. We were just told this morning that he’s requiring 100% oxygen and is still not getting enough in his blood. They’re giving medication to reduce lung fluid, and they’re hoping to do another transfusion today to increase oxygen carrying capacity.

However, if that bypass artery doesn’t close up soon, they will be forced to close it off mechanically using a surgical procedure through his femoral artery. Heart surgery is a scary thought, but being at 100% oxygen is more scary since it means we’re running out of ways to fix his breathing problems. Another scary thing is that we were just told that Arthur currently wouldn’t survive transport to Seattle Children’s for surgery, and will need to slowly recover on 100% oxygen before this intervention is possible.

Even beyond the life threatening concerns, this may have ongoing complications, because we were just told this week that 100% oxygen vastly increases the chance of eye problems, because the little blood vessels in the eye grow a lot bigger in the presence of high oxygen, and can interfere with the retina.

Arthur’s brain bleed is still exactly the same as before, which we’re told is a good thing. It doesn’t seem good to us, but at least it isn’t getting worse.

Through all this, Arthur is somehow still increasingly alert, opening his eyes to look at what’s going on around him. He continues to open his mouth to ask for his snack at the end of every care session, and happily noms on the milk stick for several minutes until it runs out. We’re drawing encouragement from this, but it’s still a pretty scary week. Please continue to pray.

UPDATE 3pm:

We were planning to come for the afternoon care session and see how Arthur was handling the transfusion and medication, but the doctor called us and told us to hurry over earlier.

Arthur’s blood oxygen was in the 40% range when it needs to be mid 80s and they couldn’t improve it. When we arrived at the hospital they had discovered that the blood oxygen in his lower body was really low, but it was better in his upper body. This led them to the conclusion that there was excessive blood pressure in the lungs and that reducing lung blood pressure with nitric oxide would help.

As of now he’s a little bit more stable, but is still low in blood oxygen in spite of all the interventions today. It’s been the worst day we’ve had in the NICU, but there’s good indications that gradual improvement is starting. It could all change suddenly though. Please continue praying.

UPDATE 7pm: Final update for the day. We just left the hospital and Arthur is a little more stable now, but with heavy intervention. He’s still near 100% oxygen and has been medically paralyzed to avoid messing with his breathing tube. He’s also no longer being fed anything until this resolves. They gave him steroids and are going to continue the nitric oxide.

Cyrus has been really struggling this afternoon with oxygen levels too, probably due to stress over all the extra people in the same room working on his brother. Laura and I aren’t doing well but we’re hanging in there. We are leaving the boys in God’s and the doctors’ hands and going home for some much needed rest.

UPDATE 7/8 8am: Arthur is no longer medically paralyzed but is now on fentanyl to help with pain and help avoid messing with the ventilator tube. The doctor told us this morning that yesterday Arthur was “as sick as you can be” and that today he’s 90% as sick as you can be. We’ll take the improvement, but it’s a lot to realize that when the doctor called us in yesterday there actually was a good chance we’d have to say goodby to Arthur. Today is a little better for him, so pray that this trend continues.

Cyrus continues to be a little stressed out and isn’t doing as well as a couple days ago before all this started. Laura and I got some rest and are a little better than last night, but it might be another long, scary day. We’ll see.

Sometimes we come to life’s crossroads
And we view what we think it the end.
But God has a much wider vision
And He knows that it’s only a bend—
The road will go on and get smoother
And after we’ve stopped for a rest,
The path that lies hidden beyond us
Is often the path that is best.
So rest and relax and grow stronger,
Let go and let God share your load
And have faith in a brighter tomorrow.
You’ve just come to a bend in the road.

– “The Bend in the Road” by Helen Steiner Rice