It’s Monday in Omaha. Normally, on a Monday, my goal would be to rush to the hospital first thing in the morning in order to catch any doctors who come by the bedside. The first day of the week is always busy with lots going on. It’s sort of an exciting time for movers and shakers like myself. But not today. I decided to stay back this morning with my other two children to spend quality time with them and run errands, while George spent most of the morning with Zion and attended the rounds conference.
When I went to see Zion yesterday afternoon after church, I found a room full of people around his bedside. For those who have never had a child in the NICU, this means something not so good happened. They were all quiet and I asked what happened. They told me that Zion had an episode where his oxygen saturation went low and took a long time to recover. My next question is always, “How low did it go?” The answer from the attending was, “60s”. In my head I instantly said to myself, “What’s the big deal?!”… however, I wear my heart on my sleeve, so I’m certain my face displayed that frustration. I’ve seen my boy dip into the 60s countless times and always recover. Then they informed me that they gave him a couple different bolus doses of medications to calm him down. My eyes shot next to his ventilator. Sure enough it was back at 100%. I recalled how great Zion was doing earlier that morning when I called to check in, as the nurse had weaned his oxygen into the 50s. (Staying in the 50s is when progress can be made here in Omaha). And then frustration mixed with anger caused the tears to roll. All the progress made was erased again. I just turned around and left and paced the NICU while silently crying to my Heavenly Father.
I went back in there after a few minutes and saw that Zion was appearing fine even though he was awake. Yet I could tell that they didn’t want me to mess with him much. It’s a sort of tension you can feel. Babies get excited when their mamas come around and they didn’t want Zion’s vitals to fluctuate again now that they had just calmed him down. I tried for a little bit to help him to go to sleep now that he was given those medicines, but he was fighting it. He wasn’t agitated, I think he just wanted to hang out with his mommy and give her kisses on her hand. But the team wanted him calm and asleep. The sweet nurse who was caring for him asked me if I would be willing to not touch him for some time. It was in that moment I felt that God wanted me to surrender all of this.
I’ve been fighting and advocating for Zion since arriving. And while I might have effected some good change, I feel in the grand scheme of things I haven’t made much of an impact on this team. I’ve tried so hard to help them understand Zion, but it’s apparent that my desires for how I want them to handle my son’s desat episodes are too far outside of their comfort zones. I feel in true self-sufficient human nature that we oftentimes can try too hard to orchestrate circumstances to pan out to be what we (in our finite minds) think is best. I’ve been riding that merry-go-round the past week and am weary from it. I feel that at this point in the journey, God wants me to trust Him and stop striving so much.
I feel I’ve gotten confirmation in this today. I got another call this afternoon from Zion’s bedside nurse. He had another episode this afternoon where his oxygen saturation dipped quite low into the 40 and 50s this time and stayed that way for some time (and in case you’re wondering, yes 40-50s is a big deal to me and is worrisome). They gave him Versed. No effect. They gave a bolus dose of morphine (on top of the morphine drip he’s already getting)… still nothing. This isn’t surprising since Zion has likely developed tolerance to these since he’s been given them so frequently while being here. So they decided to give him a bolus (one time) dose of the paralytic again just to calm him. The nurse reassured me that that was what did the trick and that his sats were now very high where they like them to be.
I’m arriving at a place this afternoon where I remember that really nothing is in my control. And I have a choice to either make peace with that, or strive against it. I’m choosing peace. I see Zion’s condition appears to be worsening, but I’m going to take my eyes off of that now and just trust the Lord. I also know for a fact that Zion is currently in the very best place for him. So that comforts me as well.
I know it wasn’t a coincidence that I received the following encouraging messages today to remind me of God’s greater purpose that He has in Zion’s life, and that we didn’t come to Omaha in vain. Just trusting in that brings me peace.
The next was from My Aunt/Godmother Mary – she sent me this poem by Corrie Ten Boom that I’ve never read before. But it is so true. So I thought I would end on that note for today.
- The Trisomy tribe here in Omaha had its first loss today. It has been a sobering and heavy day since getting the news. Please pray for this mother as she grieves the loss of her daughter.
- Continued prayer for Zion to have calm days and nights with no low desat episodes. Pray that he can wean back down on oxygen and begin weaning off of the Nitric Oxide.
- Prayers for my heart. I haven’t been able to hold Zion for a few days and I miss that terribly. I also yearn to see his adorable personality again. Pray that I have peace in my heart during this time.
- I have two teething babies! Both Judah and Zion are teething. Pray that God would give them both grace and minimize pain during this time.