Last week was overflowing with joy, commemorating the milestone of Job reaching his first birthday.
It was so lovely to mingle with many of you on Sunday and see our excitement reflected in your faces as well. Thank you for celebrating with us!
This week we hit two hard milestones: the year anniversary of Job's first open heart surgery (4/11) and of his cardiac arrest (4/13). It is sobering to think back to these awful days and to look at some of the photos from last year, like this one (taken 4/12/16).
We didn't write much of Job's "code blue" back when it happened. In part, we didn't quite understand its severity and in part we were too traumatized to even talk about it between ourselves, let alone to many other people. I think I want to, I need to, write it all out for myself now, on this anniversary day.
Job was one week old, two days post-op. He was on the ventilator, had an open chest, was medically paralyzed, and quite swollen. We had Ezra and Isaac with us for the afternoon and, since we couldn't even touch Job, and it had been such an intense week, we were relaxing and enjoying their company. We even decided to leave Job's side for a few hours for the first time and take the big boys home to Tacoma and tuck them into bed, before heading back to the hospital. We knew Job's fluid balance was of concern, but when we left the hospital he was stable.
We had just gotten through downtown Seattle when we got the call from Seattle Children's, asking for our permission to place two new chest tube drains because he was so fluid positive. We gave our permission and did think about turning back, but it was past 8pm and the boys needed to go to bed. We were certainly concerned about Job, but "just" because he had just had one of the most complicated surgeries performed in the United States, not because of any particular reason beyond that.
So when we got another phone call thirty minutes later... To say we were unprepared is quite the understatement.
We were told to get back to the hospital as soon as possible. Job's heart had stopped and they were in the middle of performing chest compressions, but they told us to come say good bye. The next few hours were and are such a blur. We turned around in Fife and called my parents to come up to the hospital to get the boys. We talked to his doctors on the phone a few more times on the phone and in the CICU lobby. We talked to Pastor Hamlin, to have him ready to come up. We just sat and waited. And waited. I do remember finally hearing that he was, in fact, "still alive" and sobbing with relief. I remember getting freaked out by how excessively solicitous the social worker was being to us, because I realized what that meant. I remember realizing the hallways were blocked off for Job. I remember phrases like "oxygen deprivation" floated out, tentatively. And perhaps the image I remember most is the sight of blood on the floor when we finally got to go to Job's room. I also remember seeing ECMO in the corner of the room, but it's those large, round, red drops of blood that I will never forget.
Job was three liters fluid positive and this excess fluid stopped his heart. The pigtail drains they were attempting to put in when his heart stopped were eventually inserted and, along with a sharpincrease if diuretics, drained the aforementioned fluid over the subsequent week and a half. He was seconds away from getting put on ECMO but avoided the necessity. He was on oxygen the entire time and has yet to show signs of oxygen deprivation from this event. Since the CICU attending was in the room, about to place the drains, CPR was started immediately. It took ten minutes for them to restart Job's heart and then hours upon hours to get him stable.
We were so new to the CHD life at that point and so naive. We really just didn't realize the significance of that night. I think the next day Seth wrote an update like "Job had a rough night last night." The gravity of what happened has sunk in gradually these subsequent months as we've realized just how close we were to losing Job that night. We've also realized how much importance his various providers attach to it, often highlighting it above other procedures or events. This at first took me by surprise and I was quick to dismiss their concerns in my ignorance.;
We felt terribly guilty for not being at the hospital when it happened, but I became grateful we weren't there when, a few months later, I was sitting in Job's room holding him and the kid next to us coded. I have never seen so many people move so fast, filling our neighbor's room and the hallway. It was terrifying to watch and listen to the commotion as the team worked frantically to save that little boy's life - as they had for Job. I absolutely think God was protecting us by allowing us to choose that night to take a break from Job's bedside to spare us from some of the immediate horror of the experience. But it was especially hard for Seth to, again, only be traveling to the hospital when someone was dying instead of being there, so it was a longtime after that until we left his side again.
Perhaps the reason I want to focus on this anniversary is because I do think about death so much these days. All three of my sons will die, of course. But two of them will likely die after me. We are almost daily confronted with the reality of how soon, relatively speaking, Job will die. Each system of his body is ravaged by the severe effects of his heart condition. We know that there are many therapies and surgeries and future medical advances that may be available to him to extend his life and mitigate some of the effects of his condition, but the reality is that his body is already failing. We see it daily as we give him a laxative, for example, because diet and natural remedies have not worked effectively enough to assist his oxygen-compromised digestive system in doing its job properly. I have to stop myself from anxious worry at what this systemic low oxygenation will continue to do to his body when we already see its effects at one year.
I hear about the death of another HLHS kid almost weekly through my Facebook support groups. I'm reading the daily updates from the first patient to receive the Norwood surgery (in 1980), as she is slowly dying this year. I actively seek out the blogs or Facebook posts of parents whose children have or are dying and have library holds on a number of books about death and grief because I'm no longer able to ignore the inevitability of death. I need to read and watch other people work through it to know how to do so myself.
Job didn't die. He's home with us. He's even starting to thrive rather than just survive. I don't want to exaggerate our sob story. But I also can't take life for granted as I used to do.
God has continuously protected us this last year plus, providing for us physically, financially, emotionally, spiritually, relationally. He has shown us such great mercy, preserving Job's physical life thus far - but even greater mercy, preserving our spiritual life by providing a Savior. It is good for me to reflect on the miracle that is Job's life and the reality of his coming death with this truth in mind so that I can honestly say "O death, where is your victory? O death, where is your sting?”
That these anniversaries hit this year during Holy Week has not escaped my notice. It brings me great comfort as well as great conviction to think about my Heavenly Father giving up His beloved son to sacrificial death on my behalf, on Job's behalf. And it comes with a command: "For this perishable body must put on the imperishable, and this mortal body must put on immortality."
Despite how often we get to correct the pronunciation of Job's name, I'm so grateful that we chose to give him this archaic, unusual name. And not just because of the delightful Tacoma history connection! We chose the name "Job" because we want our Job to someday echo the Biblical Job's conviction that "Naked I came from my mother's womb, and naked I will depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised."
I usually can't write during the darkest days, so I'm sometimes afraid that, when I do write, I sound deceptively cheerful and trusting. Some days are really dark. I struggle, wondering why we have to go through this hard journey.
But God is faithful to sustain my frail emotions and I cling to the assurance that this trial is for my good and God's glory. I don't know what good or what glory. I might not ever know. But what other purpose could something so terrible serve? I am confident that God is doing a mighty work.
I think it's sometimes said derisively that "Christianity is a crutch" but I will totally claim that crutch and gladly. I need assistance! My own strength is completely insufficient. God has been so faithful to provide that for me when I am so weak. I have seen God work through the prayers of all of you who pray for me when I cannot summon the words. He doesn't always answer prayer as I want Him to, but He does answer. Sometimes I don't realize how He has answered until much later and I don't believe I will have full answers this side of heaven, but I can and do trust that He is "able to keep [me] from falling" and will someday "present [me] faultless before the presence of his glory with exceeding joy".
I have to keep preaching to myself to look up, look up, look up. The story of Moses lifting up a bronze serpent on a staff for the complaining Israelites to look at for physical healing is one of the boys' favorite stories (it is about a snake, after all). And it's been a good reminder for me this year, especially this week as we think about Christ being lifted up on the cross for us to look to for spiritual healing. When I lose perspective and look down, at myself, at my circumstances, is when I falter most.
I have listened to more "Christian" music this year than any other. I've always been skeptical of "Christian as an adjective" art, and music most of all as I often find it lacking aesthetically. Yet I have a slowly growing playlist that I turn to when I'm most sad and overwhelmed and I'm learning to use this music to minister to myself.
Many cultures use the word "heart" in reference to the core of our emotions (rather than actually speaking about our physical, anatomical heart) and it has been a great comfort for me to seize the verses or songs that reference the word "heart" and claim them as encouragements regarding Job's physical heart (perfect example: "He heals the brokenhearted and binds up their wounds"). I know that these promises are in reference to the metaphorical, spiritual heart rather than the literal, physical heart, but they hold special meaning to me because of Job's broken physical heart. That may be a large part of why I like the following song so much.
As I have often done, I'll use lyrics to close out my ramblings because I can't come up with a fitting conclusion on my own.
My life is Yours
And my hope is in You only
And my heart You hold
'Cause You made this sinner holy
And holy holy
https://www.youtube.com/watch?v=Y-KFK2bc1Ac(Also, Facebook/Blogger really should up its game and provide the ability to insert footnotes into these posts. It's hurting me not to provide attributions, but to do so in text is too cumbersome. I
Turabian.)
I have always wondered about future hospitalizations when he's older and more mobile...
