Hills and Valleys

(Original appeared May 8, 2016)

If you have been able to follow along with us and read even a few of these journal entries, you know by now that things have been quite the roller coaster ride for us. Deb put it another way: Hills & Valleys. And that’s perhaps more true that the amusement park ride analogy.

This weekend was not the best for our little pal. His blood pressure dropped to a pretty dangerous level. They were able to control it and raise it using a few different methods. One of those things includes increasing his dopamine, which has been used to help his kidneys function, but also helps with blood pressure. This it’s good that he was already hooked up with this, and it was merely tweaking a setting on his IV, the fact that he’s still on this med and will be for a while stalls his progress toward restarting his feedings and getting into Deb’s arms. This pressure drop comes after he had several full diapers (indicating his kidneys were functioning again). Perhaps he lost some fluid volume causing a drop in blood pressure. Perhaps it’s any one of 100 different other things.
His most recent weight is 1lb 15oz (almost 2 pounds!). He seems to be growing some, but we think much of this weight gain is simply fluid retention. His brain scan came back and suggests that the blood clots are still resolving and no further bleeds exist. His hydrocephalus (water-on-the-brain) hasn’t grown much if any either, which is good news. But the bad news is that he still has these issues, and likely damage is being done as we sit here. It pains us a parents that there isn’t a darn thing we can do about it. His recent heart echo showed that the PDA still exists. That could be contributing to his ups and downs with oxygen. We still wait to see if it will seal up on its own. It’s worrisome that it hasn’t yet, however. His chest x-ray this morning was still cloudy, so whatever is in his lungs isn’t resolving. Yet he’s done pretty well overall with oxygen levels. It’s just that he has more frequent dips and rises than before.

Monday, will be a big day for Jacob. They will re-scan his heart and brain, and will also view his liver. He has needed several platelet transfusions and a few blood transfusions lately. Not long after the transfusions take place, his blood tests come back low on both, and they just aren’t sure where all of that is going. It’s possible that it’s pooling in areas that it shouldn’t, hence the need for various scans. They may also try to place the PIC line one more time on Monday. It’s failed 3 times, and it is crucial to get that in. The doctor suggested that the remaining line into his umbilical cord may be the source of a recent infection. He would like it removed to 1) reduce that possible source and 2) test the line to confirm it either is or isn’t the source. However, removing that umbilical line requires some other line into his body to give meds, feedings, etc. We would also like to see him “graduate” to a PIC line since it is a longer term solution, and will allow Deb to hold him when the time is right.

These are simply more examples of the hills and valleys we endure every day. While we may be somewhat familiar with Isaiah’s famous words that were later proclaimed by John the Baptist, I admit I never looked beyond them. Follow me on this. Isaiah 40:3 says “A voice cries: ‘In the wilderness prepare the way of the Lord; make straight in the desert a highway for our God.” Deb and I kept reading through to verse 4 to find such comfort: “Every valley shall be lifted up, and every mountain and hill be made low; the uneven ground shall become level, and the rough places a plain.” Using my armchair, Monday morning theology, it certainly was easy to apply this verse to our situation. The thought of God our Father, through Christ, leveling our steep hills, and lifting up our valleys to help us through this rough time brings such comfort.