A relentless will to LIVE

Zion and I officially arrived back to Cincinnati Children’s Hospital on Thursday afternoon. And despite the doubts of some, we are so grateful to proclaim that Zion made it ALIVE! HALLELUJAH! We thank our Lord who covered and protected him the entire way. Zion has been here a few days and has been getting settled back in. Overall he’s doing very well! His oxygen sats are much improved and his biggest struggle right now is enduring coughing fits that can last a long time as he enters the tail end of this cold virus.

It feels SO good to be back home. There truly is no place like home. George and the kids (and my dad) arrived home very early Friday morning. Since getting back, George and I have been saying how much we already miss all the family camaraderie at the Rainbow House. However, it’s so nice to be back in our own space and to enjoy sleeping in our own beds. It’s funny because the house seems so big and spacious to me now after all four of us hunkering down in a small hotel room for a month! And oh how I’ve missed all of my kitchen appliances! It’s the little things 🙂 Our perspectives can become so veiled living in this world. I’ve found that sometimes God needs to confine you in a challenging spot for a period, in order to not only give you new “eyes”, but also to grow a greater appreciation for what He has already given you.

The departure Thursday morning from Omaha Children’s Hospital was so special and so blessed, and we wanted to share some of what happened that we are grateful for…

Dr. Hammel came by to pay Zion a farewell visit before he went into surgery. We spoke for a few minutes as he shared how he learned something from Zion. What he learned was how fast pulmonary hypertension can progress in a baby with Trisomy 18 – alarmingly fast actually when you consider the dramatic worsening of Zion’s disease in the 6-week time period between the heart cath procedures in Cincinnati and Omaha. No one, not even Dr. Hammel himself, imagined Zion’s resistance would have been that high. He lamented how he felt they “failed” Zion – but I assured him that we didn’t feel that way at all, and trust that God had a purpose in bringing Zion to Omaha. Lastly he shared how Zion’s case has confirmed his belief that heart repair in Trisomy babies should be ideally within the first six weeks of life. (Zion was around that age when he had his first heart cath in Cincinnati). It’s easy to wonder what could have been for Zion if only we had been in Omaha for that first cath, but we have total peace in how Zion’s story is unfolding despite that. We now believe the fact that Zion’s heart remains un-repaired has actually been a platform for God to display even greater glory in our boy’s life.

It was overwhelming to see how many showed up to Zion’s bedside to say farewell. Some of his favorite nurses whom I feel loved him just a little more than most showed up on their days off just to say goodbye to him. Others came by whom I’ve never even met or seen before. Christi and Kelly from the Trisomy program stopped in and it was nice to talk about what the future might look like in Omaha in regards to care of Trisomy babies. We also discussed how they are learning with each of these unique babies how resilient they can be in bouncing back from medical setbacks. There were lots of hugs, pats on the backs, praises and heartfelt discussions I had with many on the team. I also took the opportunity to show gratitude to the Omaha team in particular for bearing with me – a strong-willed mother who was ultimately labeled a “micromanager” as I fiercely (yet respectfully) advocated for my son, most certainly ruffling feathers along the way. With tears I explained that it was all out of deep love for Zion.

Some other favorite memories were the palliative doctor giving us an amazing memento that we will cherish forever – this little heart “painting” comprised of the fingerprints of many who cared for Zion in Omaha. How touching!

Another blessed moment was the benediction prayer that was lead by the hospital chaplain and attended by at least 10-15 other NICU staff members. She gave us a little wooden cross, prayed that God would “go before Zion and prepare his way”, and read the most perfectly fitting scripture that we believe was more prophetic than she realized as everyone surrounded Zion’s bedside:

God Will Remember Zion

But Zion said, “The Lord has forsaken me,
And my Lord has forgotten me.”

“Can a woman forget her nursing child,
And not have compassion on the son of her womb?
Surely they may forget,
Yet I will not forget you.
See, I have inscribed you on the palms of My hands;
Your walls are continually before Me.
Your sons shall make haste;
Your destroyers and those who laid you waste
Shall go away from you.
Lift up your eyes, look around and see;
All these gather together and come to you.
As I live,” says the Lord,
“You shall surely clothe yourselves with them all as an ornament,
And bind them on you as a bride does.

Isaiah 49:14-18

At the end of the benediction, George and I got to have a final chance to share parting words with the team of doctors, nurses and other staff members surrounding his room. I tearfully thanked everyone listening for their care for our son. The NICU staff are truly who God uses as vessels to preserve Zion’s life day in and day out. There will never be a way we can thank all these hospital personnel, in particular the nursing and respiratory teams who have done the vast majority of the leg work in caring for our son since his birth. They likely don’t get accolades for what they do, so we wanted to make sure to praise their steadfast efforts.

The Holy Spirit also wouldn’t allow me to let them all walk away without also witnessing to them the reason for the constant hope we had for our son that it seemed they never quite understood. I told them that we still had hope for Zion because we try not to intently look at what we see happening in his little body at any given time. No, we can’t fix our eyes on “the wind and the waves” as my husband so perfectly says. We instead look to a Person. And that Person is Jesus Christ. That is how we can continue to have hope despite circumstances that seem scary and impossible.

“Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.”

2 Corinthians 4:16-18

George was also able to add how God impressed on his heart so strongly how every person has an innate desire to LIVE. And that if Zion could speak, he would be saying, “Fight for me daddy. Fight for me mommy.” He wanted to put aside concerns some had that we as parents were expecting too much out of our son. Or that we were pushing our son to keep living for selfish reasons. He asserted that we were simply fighting with our son, who happens to be a little warrior who apparently has a relentless will to live. And that we couldn’t stop this fight until God calls Zion home.

Words can’t express the warm and amazing feeling we had that morning leaving Omaha. It was such a special morning and the perfect way to close out this chapter of Zion’s journey. God was so kind to us that entire day, as you will continue to read below.

On the flight over to Cincinnati, not long after getting in the air, Zion’s oxygen started dipping with the altitude changes. This was something we expected. I could see the serious looks on the flight nurse faces as they watched his oxygen sats. I asked one of them how he was doing. He told me his sats weren’t coming up above the 50s, but he couldn’t understand how his coloring was so good. He said how normally a baby satting in the 50s would look so much worse. I reassured him that it was because God’s grace was upon Zion and that he would be okay, as they proceeded to start bagging him.

In the meantime, I still had so much hope as I just continued praying in the back of the plane. I knew that, because we pray and trust in the Lord, it was literally God’s hand pumping that bag through the vessel of a flight nurse to keep Zion oxygenated. What immense peace that hope and knowledge brought. And I thanked God that the flight back to Cincinnati was a lot shorter than the one coming here, since this time around it was much more challenging for Zion. You see, everywhere Zion goes, he is proclaiming the glory of God in how his little life perseveres against all odds.

The shadow of death was hovering however during the second half of the flight home. I will be honest – it was quite a scary hour and a half. About halfway through the 2 hour and 15 minute flight, Zion’s oxygen had dropped into the 40s. During that time I started watching the flight nurses again as their eyes nervously bounced from the monitor to each other. A recent conversation with one of the Omaha doctors replayed in my head where he was pleading with me to reconsider flying Zion home because he felt he was too ill to fly. Doubts entered my head for a short time.

The nurses tried bagging him a few times to get his oxygen up, but it didn’t help. Giving more sedation meds didn’t help either. I watched as Zion’s coloring changed from pink to a dusky grey. As I gazed at Zion from the back of the plane, it looked as though his life was fading out of him, but God kept my heart at peace in the way that only God can. At that time, the flight nurses made a judgment call that I know is not normal protocol but is only for desperate measures – they let me unbuckle and come up to be near him so I could touch him. I am eternally grateful to them for allowing me to do that.

When I glanced at the monitor and saw his oxygen dropping into the 30s, then the 20s and then the teens, with his heart rate dipping at times, I knew that Zion’s life was fading. Zion has tolerated low oxygen saturations very well, but when the heart rate dips low in unison with low oxygen, that is always an ominous sign. His skin was very cold, his fingers and toes were blue, and I began to cry because I thought this was it. I just talked to him. Rubbed him. Prayed with him. Sang to him. Kissed him. Anything I could think of to encourage him to keep fighting. I knew that God and God alone could save him at this point. Zion’s oxygen stayed below 30% for over one hour. I snapped the photo below to remember this moment forever as I just clung to the hope that God would glorify Himself in this situation.

I started deliberately fixing my mind on Jesus at that time (Hebrews 12:2). I praised Him for getting Zion this far. And I figured that if He took Zion while in the sky, what an honor it would be to get to escort my son halfway to Heaven. A peace just came over me as I realized that, either way, it was going to be okay. The tears stopped. I also deliberately started looking more at Zion and not at his monitor numbers – just hoping in God’s mercy and goodness. And what I saw happen next made no medical sense. As Zion’s oxygen stayed in the teens and 20s, the gray coloring faded and some pink came into his fingers. I pointed out to the nurses how his coloring was improving and defying the monitor, and they agreed! I felt a confidence at that time that God was going to keep Zion and get him to Cincinnati safely. And that He did.

Hallelujah!!! WORTHY IS THE LAMB OF GOD!!!

I was filled with joy as we walked into Cincinnati Children’s because Zion had just experienced victory in Jesus Christ! The welcoming we received was equally as heartwarming as the Omaha departure as people came up to hug me, pat me on the back, and say hello to Zion. Another thing I noticed right away was how God was so kind to orchestrate not only one of the NICU’s best respiratory therapists to be working that day, but also one of the most skilled bedside nurses was assigned to Zion that day as well. It felt so good to be home and around a team that knew Zion well.

The RTs jumped in very quickly to get Zion resuscitated – his oxygen sats very quickly jumped into the 60s. During that time I (strangely) took a call from a lady with BSF (Bible Study Fellowship) who I have been playing “phone tag” with. She wanted to touch base and see how we were doing upon arriving back home. I told her what was happening in that moment and she asked to pray with me, so of course I accepted. As this woman prayed the most heartfelt prayer, and the RT team kept tinkering with Zion’s vent settings, his oxygen climbed into the 90s! I told her what happened and she simply gasped and said how she got chills knowing that God did that. “The prayers of the righteous availeth much.” Once they found Zion’s “happy place” on the vent, that is where he literally remained through the rest of the afternoon and night despite waking up over his paralytic drip!

It was the happiest reunion day indeed. Dr. Hirsch (the cardiologist) also came by to say hello with a warm hug. He told me before we left for Omaha that he would “welcome Zion back with open arms” – and that’s exactly what he did! He shared with me how he will be giving a talk at an upcoming fetology conference about Trisomy 13 & 18 outcomes. I smiled in my heart to hear this because it’s a sure sign of progress and hope for the future of rare Trisomy babies.

Another touching moment was when one of the nurse practitioners came in and said how the Omaha neonatologist who sent Zion off had already been calling to inquire on his status. She really took notice of that and said how thoughtful the doctor’s comments were. She emphasized that she could tell how much this doctor “really cared for Zion’s wellbeing”. I was amazed to learn this because this was the same doctor who pleaded with George and I to let Zion go, because he felt in his heart that it was what was best for Zion. She took a screen shot of his oxygen sats on the monitor to email to him. I hope that Zion’s survival serves as a witness to our faith and hope in Christ, because Christ alone is why Zion continues to defy the odds that have been stacked against him since birth.

The past couple of days Zion has been doing overall VERY well! It’s hard to believe that this is a baby that some doctor’s felt needed to die. Because the baby we see still has life in him and is persevering. Zion has moments where his oxygen will drop when he is upset about something, but this is simply a part of his pulmonary hypertension and is something he will endure the rest of his days. The goal now is to get Zion’s oxygen status stabilized, his medications optimized, and to prepare him to eventually come home. But in order to come home, the big test will be the day we try him out on the “home vent”. Zion must be able to breathe okay on a home ventilator in order to come home. So before that big day comes, we will be sure to let everyone know to be praying. In the meantime we ask everyone to pray that Zion will be nursed back to health, will put on some more weight, and grow stronger.

There is so much we learned through the Omaha experience. I learned how doubtful I can become when I fix my eyes too intently on the wind and the waves in Zion’s life. God has also confirmed so powerfully to me how often His wisdom, guidance and discernment come to our family through my husband. God says in His word that the husband “is the head” (Ephesians 5:23). I am so grateful to have George as my head. It has been remarkable to watch my husband’s faith grow exponentially through this journey. Before Zion, I rarely saw my husband cry. Now, tearful, heartfelt prayers to God have become his norm. He is so filled with hope for Zion. It’s such a beautiful thing to witness and my love for this man is growing deeper with each passing day. He truly has been so steadfast in the Lord during the rockiest of times. He often would say to me, “I’m not giving up on God.” Or, “Just like Job, Satan is testing and sifting us like wheat right now.” In the hard moments, I honestly felt like my husband had a blind spot, and wasn’t accurately seeing Zion’s plight as I was. There were so many times I looked at my son, and truly thought he might indeed be dying. The doctors almost had me convinced. But now, with Zion being back in Cincinnati, safe and sound, and stable, I see that I was the one who was wrong. I am so grateful for George’s leadership at a point in time in Omaha when the spiritual battle against our son’s life was so strong that I felt like I was going to crumble under the pressure. But my husband remained solid as a rock in Christ. And Zion is here, still living, largely because of George’s unshakeable faith.

What a blessing these babies can be, if only they are allowed to LIVE! There are so many “revelations” George and I have had through this experience with Zion. For me, I’ve been meditating on the following truth:

…we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Romans 5:3-5

I am literally watching this scripture come to pass in my husband – it is a reality that is so excellent and so praiseworthy as I ponder it in my heart (Philippians 4:8). Could it be that the enemy tries so hard to get babies like Zion to die BECAUSE of the good fruit that is born in the hearts of not only the families of these children, but also everyone who knows them? Or might the enemy be jealous of how these children draw people to God as the Lord is glorified in their little “defective” bodies? With each passing day we see just a little more into the tapestry of glory that God is weaving into Zion’s life.

From this point forward, our goal is to give Zion what HE would want. He has fought so hard in his short life, and now we hope to make it all about bringing him peace and joy. Coming home to spend all of his time with his family will be a big part of that. My dream is to “kill the fatted calf” and have a huge Homecoming party for Zion where everyone who has loved and prayed for him over the months can finally come and meet him!!! Will you join me in prayer for God to bring this to pass?

We want to thank the Duffy family for adding a little sunshine to the outside of our home while we were gone. We are grateful to the Ryan family for mowing our lawn while gone. The De Jaco family has helped us in various ways from checking our mail to watching over our house. Thank you to Mel with A Heart For God Clothing for encouraging our children to “be strong and courageous” as they wear their adorable new t-shirts. We appreciate the Pepper family for blessing us with a home-cooked dinner AND breakfast to enjoy in our first days home. And we are immensely grateful to my husband’s employer, Answers In Genesis, for being so supportive of our family during this trial. Enjoy some of our recent photos and we will be sure to keep you updated as we finalize details for our son’s next steps.

PS – many have commented how “strong” we are to endure this trial. We want to proclaim that we aren’t strong at all. It is CHRIST Himself who is strong in us.

We are so happy to be home! ☺️