Brain imaging results

(Original appeared April 16, 2016)

We took the time last night to focus on the news we received yesterday afternoon following Jacob’s brain ultrasound. Since this journal isn’t intended to be a suspense novel, I’ll tell you up front that it was not the news we wanted to hear. And yet, 12 hours after hearing the news, we have come to grips with the full power of so many of the inspirational Bible verses and words of encouragement we’ve been clinging on to over this last week. For instance, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose” (Rom 8:28).
How can this situation be “good”? Could this really be the plan for us? Don’t we have the right to be angry with the situation? We have so many questions, and have a few unpleasant things to say about this ourselves. We are about to burst. And then “He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” (Ps 46:10)
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Jacob has been diagnosed with Grade 4 Intraventricular Hemorrhaging (IVH). The grading scale is 1-4, 4 being the worst. Here is a link for a good description of IVH. Simply put, IVH is “bleeding into the fluid-filled areas (ventricles) inside the brain.” At a grade 4 level, the bleeding is severe enough that not only have the ventricles filled with blood but the blood is now leaking out into the surrounding brain tissue. This can cause blood clots to form, damaging the brain tissue and impairing/ending whatever ability that tissue would have had to perform in the future. The clots can also prevent the normal circulation of brain fluid, leading to a build up called hydrocephalus, sometimes nicknamed “water on the brain”. This leads to unhealthy pressure and may be treated with a tube inserted into the brain to drain the fluid.
The reality is that Jacob is at significant risk for developmental challenges. Yet we are hopefully due to the fact that the most common symptoms of IVH are not being seen at the moment. In other words, he’s healthy and his vitals are fine and show good progress, whereas in many cases of IVH-4, you see significant health issues associated with it.
Following the news, Deb and I shared that time together that some parents have also had to endure. The huddled hug-with-foreheads-touching sobfest. Deb’s sister visited shortly after we heard the news and this really lifted Deb’s spirits. I took the time to talk a walk. I found a lone park bench and in the quiet of the impending evening, bathed by growing shadows while the sun slowly set, I wept. Hard. I gathered myself to report the news to my brother. And to him I will be eternally grateful; he made it clear to me in that moment that Jacob is not done for – not by a long shot. Sure this is a hurdle, but it’s not the end of the road for him. While this is the worst condition for this one factor (IVH), it is not the worst for him overall. It means little more than that we have one more hurdle to jump. I was able to pull my big boy pants up, walk confidently back into that cozy little hospital room, and look with new eyes on Jacob. Deb greeted me with that smile that conveyed without words: “all will be well”.
On a personal note, all the poignant Bible verses and inspirational cat posters sure are cute until the floor falls out beneath you. It is then when God tests your mettle, and uses His very words to bring you close to him. The words are little more than print on paper until that moment when all seems utterly lost and broken. Maybe, just maybe, that is one of the reasons why he allows us to share these experiences with Him while He walks along side of us. Our relationship with Him matures, is refined, as things heat up.
“The Lord makes firm the steps of the one who delights in him; though he may stumble, he will not fall, for the Lord upholds him with his hand.” (Ps 37:23-24)
So, with that, Deb and I continue to learn, cope with, and understand that his ways are not our ways (Is 55:8-9), and that His plans will prosper us (Jer 29:11) and prevail (Prov 19:21). These words will not make this journey any simpler. We must still walk the path – a path we did not choose. We still grapple with the fact that we had our own plans, or own preconceived notions of how this should have played out. Now, we must leap from that planned path, in faith, to the one He has set out for us.