A heart ravaged

The other day, the Children’s Hospital had a “mini carnival” for the kids. One of the stations set up was for arts and crafts. Eden and I parked there, while daddy and Judah went elsewhere. We ended up making some cute little door hangers for each of the kid’s bedrooms. It’s been quite a while since I last sat down to create something. And I don’t believe I’m particularly artistic. But it was very cathartic and relaxing. I couldn’t help but also notice how the lady helping Eden and I was coloring in a lovely picture in an adult coloring book. After the carnival was over, I jokingly said to George, “I need to get one of those adult coloring books. I think it will be good for my soul.”

Fast forward to yesterday. I was sitting outside in the hospital’s main entrance getting some much-needed sun, waiting for the call that Zion’s procedures were over. Then I recalled that one of the palliative care doctors had handed me a gift bag as Zion was being wheeled away for his cath. Sitting there on that bench, I reached inside, and the first thing I pulled out was…

an adult coloring book!

The bag was filled with other random goodies like soft plush socks and a couple bags of sour candy (those who know me well know my weakness for sour candy). Tears instantly flowed as I felt the Lord whisper to my spirit, “I love you Devon. I haven’t forgotten you in this trial I’ve appointed for you.”

How overwhelming to know that even those little silly half-desires that I mention in passing, My Heavenly Father hears and cares about. The Bible teaches that He knows His children in such a deep way, that we actually cannot comprehend it with our finite minds until we reach Heaven, where we will finally know Him as He knows us. So now I know for certain that coloring must indeed be good for my soul, because my Heavenly Father so lovingly confirmed it. ☺️

The nurse with Zion in the cath lab was faithful to call me every hour as promised. I just wanted to get to that final “Everything’s all done!” call so that I could exhale. I did get that call after about 3 hours of procedure time and was so relieved as I thanked God. He made it out alive! OMAHALLELUJAH! The nurse told me to head up to the NICU lobby where the cath doc would be on his way to speak with me shortly. Well, I waited in that lobby for over an hour. I thought to myself, “Here we go again”. It was just like last time, when all was supposedly finished, yet it took much longer than expected for the doctor to actually come talk to me. I had to take captive the thoughts of Zion having another cardiac arrest, or other scary post-procedure complication.

The cath doctor finally came in with his team and ushered me to a conference room. He took a minute to lead up to the verdict by describing how the procedure itself went. But then he shared the heartbreaking news. The doctor somberly told me that Zion’s pulmonary vascular resistance was incredibly high. In fact, his pressures have more than doubled since he got that first heart cath in Cincinnati. With my former background in pulmonary hypertension, I knew that a PVR of 20 was astounding for my little son. And it showed an alarmingly fast progression of his disease in just a month and a half. He informed me that he hasn’t confirmed with Dr. Hammel yet, but he was almost certain Hammel could never repair a heart with pressures that high. Then he said the words parents hate to hear, “I’m very sorry. But there’s not much else we can do.”

God gave me His strength in that meeting – I didn’t shed a tear in the face of the news.

For in the time of trouble he shall hide me in his pavilion: in the secret of his tabernacle shall he hide me; he shall set me up upon a rock.

Psalm 27:5

I knew my son’s “window” for repair was closing. However we just had to explore the possibility of coming to Omaha, in hopes that Zion’s window would still be just slightly cracked open enough for Dr. Hammel to reconstruct his heart. I personally would always have wondered “What if?” had I not explored this. I felt confirmed in the pressure I put on Cincinnati to release Zion, and the continued pressure I put on the team here in Omaha to get him to the cath lab ASAP. A mother simply knows, she just knows, when her baby is slowly dying. Zion wasn’t the same after his cardiac arrest in the cath lab. And the past month, while waiting for insurance approval, and then haggling with Cincinnati about Zion’s discharge date, he’s gotten markedly worse. Those moments when not only his oxygen but also his heart rate dips very low show me that his little heart is getting tired.

I thanked the cardiology team for what they did for Zion and proceeded to go see my little warrior. The nurses in the NICU were all somber-looking and quiet. They showed me how they decorated his bedroom with superhero decals while he was gone. It truly made my heart smile after such a difficult moment. I spent some time praising Zion for his strength and whispered to him that I had plans for him, then I gathered my things and went back to the Rainbow House to break the news to George and the kids.

Today, George and I plan to speak to the team to talk about where we go from here with Zion. I myself though, have already been planning out how I would like the rest of Zion’s days to go. I want my son to be AWAKE. And I want to bring my son home. I don’t know if the latter is even possible now. But God promises me in His word that, “All things are possible” with Him. So that will be my new big request of my Lord.

I know so many of you have cried with us throughout this journey – and we love you for abiding with us in that way! Please take heart, God is GOOD in all His ways. There is so much peace in that truth! Did He hear all of our prayers for Zion? I believe He did! Did He answer them how we desired? No. However, God’s “No”s are often a means to bring forth good change in our lives, or to do great things in the future. We aren’t angry with God and respect His answer because He is God. Who are we to question the omnipotent, omnipresent, omniscient God Almighty? This is why we end our prayers in reverence of the Holy One like Jesus did, “But not my will Father, May Your will be done.”

Please pray that God would continue to comfort our hearts and would grant my husband and I unity as we decide where to go from here. Pray also that we would continue to make the most of every moment we have with Zion. In the meantime I want to comfort your hearts with this little story. When I walked into the NICU to see Zion after getting the sad news, I noticed something immediately. On his vitals monitor he was “high satting”! His oxygen saturation was in the 90s! And I should also mention that the team had been able to wean his oxygen on the vent down into the 30s! Zion hasn’t had such high oxygen saturation and such low oxygen requirements on the vent the entire time he’s been in Omaha. The nurses and I were all so perplexed. Such devastating news about his heart disease, yet look at his vitals tonight!

It was as if Zion was telling us the only way he knew how, “Don’t worry mommy. I’m not going anywhere just yet. I still have fight left in me because my God shall come, and shall not keep silent.”