I feel as though my mind started clearing the day after we got the sad news about Zion’s pulmonary hypertension. That morning my husband and I spoke with the “unfriendly” neonatologist and a nurse practitioner during rounds. Normally there are more people in the room, but not that day. The conversation was hard and brought me to tears at one point. It seemed they were trying a little too hard to orchestrate a conversation surrounding how we want Zion to “live out the rest of his days”. They brought up how we needed to decide about DNRs (Do Not Resuscitate) orders. And they dwelled on how sick Zion was and how they have exhausted all measures for him. The unfriendly doctor said how he feels that even though we have technology in medicine to help babies, it sometimes comes to a point where using technology to keep a baby alive is not practicing good medicine, in his opinion. We came all this way in hopes for a heart repair, and here we were, just 2 weeks into our stay, and we’re talking over Zion’s death?! This was a hard day for my husband. He was battling feelings of anger and sadness and was having difficulty processing those feelings. I felt numb, and assumed this was God’s verdict.
However, as I was laying there in bed that afternoon while our children napped, I felt this little flicker of hope ignite in my heart. As I thought about Zion and how things have transpired since arriving in Omaha, the flicker turned to a bigger flame. I was seeing things more clearly. Putting things together. Getting new ideas for Zion. The flame grew into a fire by the time George woke up. I started sharing my heart with him about my thoughts and ideas. Why does Zion have to die just because his pulmonary hypertension pressures were high? I felt somewhat like a fool for even entertaining that sort of conversation earlier in the day. I posted a question to the Rare Trisomy group. I wanted to hear from parents of babies with pulmonary hypertension with high pressures and resistance. And I also wanted to hear from parents who have chose to end the fight for their baby, and what their thoughts and learnings were from that experience.
The answers I got only emboldened me more. I saw multiple stories of T-18 children of various ages, some approaching 10 years of age, who were surviving with severe pulmonary hypertension, thanks to taking various PH medications. Some of these children had to be on 2 or even 3 PH medications at once, but they were surviving. Why aren’t these medication options first being offered to Zion before a conversation about how he will die happens? I believe the answer is that while Omaha is an amazing institution overall for a baby with Trisomy, unfortunately not everyone working within that hospital is Trisomy-friendly. I never expected this. So many questions arose. Ideas and plans for Zion started dropping into my head. I got up from bed, grabbed a notepad, and quickly jotted down a plan, OUR plan, for Zion moving forward. No. We weren’t going to accept that Zion needed to die.
I was eager to present our desires the next day. When the meeting commenced, I shared our change of heart and our new plan with Mr. “Unfriendly” – he really didn’t push back and just seemed to accept it. I also gave him a little gift bag that had a brand new Bible in it, with the most perfectly-worded card that God helped me find. I continued to pray that God would begin to work in and soften his hard heart. Little did this man know that what was in that little purple bag was “living and active, sharper than any two-edged sword, piercing to the division of soul and of spirit, of joints and of marrow, and discerning the thoughts and intentions of the heart.” (Hebrews 4:12)
God also put on my husband’s heart to do a 7-day fast, and to invite others to join in. He made a post on Facebook, and in no time at all many people were sharing it and excitedly proclaiming that they were “in”! Recall, I have been fasting since arriving in Omaha. So to now have my husband and so many others joining me is incredibly exciting! There are so many amazing testimonies in the Bible that have been birthed through fasting as a means to draw near to God and seek His help.
Our plan for Zion is manifold and it all came together today! We had our first true multi-disciplinary care conference this morning. Present was the head neonatologist, the palliative care doctor, the heart cath doctor, the PH nurse practitioner, the NICU nurse practitioner, Dr. Hammel’s care coordinator, and Zion’s bedside nurse for that day. I prayed before that God would be with me and give me favor in their eyes, because I was a little nervous not knowing how they would respond to our requests for such sweeping changes in Zion’s care plan. But God truly went before me in this and prepared my way. I didn’t have to entreat them as I expected. They took the lead in presenting the changes they were going to make moving forward, while asking for my input and suggestions, and the changes were exactly what I shared the day before with Mr. Unfriendly. I was SO pleased with how the meeting went and finally felt that they were making us, as Zion’s parents, a part of his care plan.
It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”
The plan includes waking my son up and not using the paralytic anymore. Weaning him down off the cocktail of sedative drips he’s been on. Changing his oxygen “goal sats” to be lower, which is more reasonable for his current state. And most importantly, getting him started on a more manageable pulmonary hypertension medication. Certain team members have tried in the past to convince me that Zion’s baseline had changed, and that he was sicker now then he was two weeks ago, but I simply did not believe that. So this plan was an attempt to prove this. They even apologized for how the conversation went in rounds the other day and explained that it shouldn’t have happened the way it did. It truly felt like REDEMPTION DAY! And I left that room feeling so empowered and grateful for these huge wins for Zion.
Basically, this is a week of cleansing and testing of Zion. We want God to glorify Himself in our son apart from what doctors can do. The team here also feels confident that they should be able to get our insurance to approve a “back transfer” – flying Zion back to Cincinnati Children’s to continue out his care there, at a hospital closer to our home. I didn’t think this would even be possible so I never even asked. But they are trying, so we want to pray about that as well. Since heart surgery for our son is now officially off the table forever, it would be ideal to go back home asap. They said if Zion stabilizes on our new plan, that we could even be seeing a transfer happen in as soon as a week.
I have one last interesting update. Recall the conversation about God that I had with the “unfriendly” neonatologist the other week. Well, he dropped by this morning and handed me two position papers from the Vatican that he said represent his current stance and beliefs on caring for the critically ill child. He wanted me to read them and I told him I most definitely would. But I added the disclaimer that I would compare everything in this article to the Word of God, and asked him if he would be willing to hear any rebuttals I might have. He agreed. Please be praying that I would discern the lies in the article, if there are any, and that God would soften his heart to receive the truth.
I will end this by saying that today Zion did VERY well overall on his new plan! Glory to God in the highest!