As I write this, Zion has been back at Cincinnati Children’s just over 2 weeks and is 177 days old. He is still doing very well overall thanks be to our Lord Jesus Christ. This past Friday, George and I had a big multi-disciplinary care meeting regarding Zion coming home. We think the meeting went well as we expressed our strong desire to bring Zion home to enjoy the rest of his days WITH his family in the home he’s never seen. The NICU team fully understands our goals and are in support of this; however they want to ensure that we have all the help and resources that we will need before discharging our son. You can tell they desire to set us up for success, and we appreciate that.
After that meeting, as George and I got back to Zion’s bedside, I noticed immediately that he had a high heart rate (180s). And when I touched him he felt warmer than usual. So it appeared that he had yet another fever. After the excitement of what we discussed in the meeting, I felt like this latest episode totally took the wind out of my sail. After some septic workups, it seems that these fevers were in response to the Rhinovirus still being in Zion’s system. So I prepared my heart that this would likely delay him getting transferred to the TCC.
The TCC is the Transition Care Center here at the hospital. That is where babies/kids (often on ventilators) go who are preparing to go home, while their family undergoes training in preparation for their arrival. The TCC is used to more stable babies who don’t have vitals that fluctuate like Zion’s do, so this would be something very atypical for what that team is used to. At the TCC Zion will make the big switch to a home ventilator to prove himself on it for about 2 weeks. (Zion will be unable to come home if he cannot switch to a home vent). During that time George and I will undergo more intensive training regarding the various day to day and emergent care needs that will arise for Zion. Once the switch to the TCC happens, we will request lots of prayers since there will be lots of activities going on.
In closing, we also wanted to share an amazing testimony of God’s healing that happened this past Sunday evening. At 9pm I got a phone call from the NICU. My heart always pauses when I see the hospital phone number at that hour because I know that the NICU team doesn’t typically call you during the evening time. The nurse practitioner told me that Zion’s heart rate had fallen to the 60s and had stayed there for the last 15 minutes. I gasped, “Sixties?!” (Zion’s heart rate has never dropped in this way for an extended period of time.) A sustained low heart rate like that is often times an imminent sign of death. She told me that they didn’t know what was going on and said that we should come in. I rushed to the hospital immediately while George stayed back to wait for a sitter. I prayed and prayed on the way there.
When I arrived to his room, I immediately glanced at his monitor and saw that Zion’s heart rate was still in the 60s. Strangely though, his oxygen saturation was still normal which was puzzling the team. I also noticed that he was very pale. He did move a little when he heard my voice, but was definitely not as responsive to me as he usually is. The doctor admitted that he really had no clue what was going on, but he did want to prepare me that this could be a sign that Zion’s heart was shutting down. Deep breaths…
God knows that we hold Zion with an open hand because we know that Zion is the Lord’s and He can have His way in our son’s life for His glory. I wondered if these might be Zion’s last moments on Earth. But God really girded my soul as I pondered the possibility because I didn’t feel fearful and had total peace, despite how Zion was presenting. I expressed my desire to hold Zion immediately and the team agreed that it was okay to proceed. As I picked him up I commented how his little body was more limp and lifeless than it normally was. And what happened next made zero medical sense.
As I picked Zion up from his crib and slowly got situated into the adjacent chair, I glanced up at his monitor as I usually do to.
“140s?”, I questioned as I looked at his heart rate on the monitor. I thought I was seeing things. Everyone in the room remained silent with looks of confusion.
“140s? Is that right?”, I asked again. The neonatologist came over and listened to Zion’s heart with the stethoscope to ensure what we were seeing was real. It was. No one could explain it, but Zion’s heart rate instantly increased (80 points) to a normal rate the second he went into my arms. It was an amazing display of God’s glory!!! The team remained quite silent in the room after the fact, which I attribute to the fear of God falling upon them. Not fear in a “scared” type of way. But fear in an awestruck sort of way when you know something divine just happened. The doctor broke the silence by proclaiming, “Maybe it’s called Trisomy 18 because these babies have eighteen lives?” 😀
The Lord is doing such amazing things in and through Zion John. We are so blessed for each day we have with him and are honored to have been chosen to be his parents. Next time you hear from us we are hoping our son will have been transferred to the TCC. If Zion remains stable with no other events, it could be as soon as this Monday. Our praises and prayer requests are below!
- We thank the LORD yet again for preserving Zion’s life from death after the scary episode on Sunday night.
- Zion is completely off of the inhaled Nitric Oxide (a medication used to treat his pulmonary hypertension that he cannot go home on). We proceeded forward in faith by having it removed completely from his room.
- Zion’s oxygen requirements have been amazingly LOW! On most days he is able to be weaned into the 20s and 30s. At one time he even got down to 21% for the first time ever (21% = room air!!!) This is a night and day improvement from where he was in Omaha. We thank God for giving us the wisdom to know our son’s true baselines despite doctors in Omaha asserting that our son required “full support” of nitric oxide and 100% oxygen in order to survive. Zion has come so far! And his oxygen requirement being so low is exactly where we want him because now when he has the occasional pulmonary hypertension crisis or has a low oxygen desaturation event, we have LOTS of room now to increase his oxygen to help him breathe and better oxygenate in order to make it through those times. Speaking of those “desat” events, Zion is recovering SO much faster from them than he did in Omaha. It’s really uncanny. But it’s clear Zion is much happier and healthier since arriving back in Cincinnati.
- We might have our first home nurse ready to be on the books for Zion! It’s not official yet, but she sounds perfect for our family and comes with a huge resume of prior experience.
- We have some new neighbors across the street, and they happen to be a wonderful God-fearing family. And are you ready for this? The wife’s occupation involves working with insurance companies to get patients enteral foods (Ex: foods given by G-tubes!) LOOK AT GOD!!! Only He can orchestrate something like this! We are so excited to get to know this family. And it would be an incredible blessing if the wife is able to help us find the best nutrition through Zion’s insurance plan as we begin to consider giving Zion real foods through his G tube soon.
- We are so grateful for the newfound appreciation we have for our children. Going through an experience like this really helps you to see your other “healthy” children in a new light. I find myself giving them very long, deep hugs now. It blesses my heart so much to hear my 4-yr old coo as she tells me how much she loves those hugs. Or to hear my 2-yr old ask for “Tight huuuugs! Tight huuuugs!” I know speaking for myself, when someone I love gives me an extended, embracing hug, it really is the best feeling in the world. You know, the type of hug where you let out a contented humming sound while you sway back and forth together for a bit? It melts away so much pain and stress. There have been countless times where George and I have witnessed Zion’s oxygen increase the moment we start showing him love and affection through touch. It’s actually been amazing to have the opportunity to witness this reality by having a child that is attached to a vitals monitor – you can literally see the effect of love on a child! I realized the other day how we have been so busy running around in this new life with Zion that I haven’t stopped to HUG my husband and kids enough. So I have been very intentional to give long hugs to my family more recently. I truly believe God used me the other night to literally hug Zion to life. HUGS GIVE LIFE!!! So… I now must ask YOU. Have you hugged your loved ones today? If not, when was the last time you actually gave a long, embracing hug to your spouse or children?Go give them some life!!!
- THANK YOU to those who continue to shower us with love. We have received items like a precious handwritten card from a mother/daughter ministry, more arts and crafts activities for our children, all-natural lotions and oils to give Zion massages, and an adorable photo shoot for Zion by a church friend.
- It’s been a blessing to be back at Cincinnati Children’s. Absence really did make the heart grow fonder. This time around, we feel a greater sense of unity with the medical team. They seem to have a greater level of respect for our desires and wishes for our son and are making sincere efforts to help us achieve our goal of getting Zion home as quickly (and safely) as possible.
- Pray that Zion would be healed from the Rhinovirus and all complications (in particular the coughing fits).
- Pray that we would find a formula that works well for Zion’s tummy as the one he’s currently on is causing some spitting up. (THANK YOU to those who have given/offered breast milk!!! We plan to use it once Zion comes home).
- Please pray that God would send home nurses our way as we undergo a recruiting process to find as many as we can as soon as possible. Some in the hospital have braced us that this process to find home nurses can take MONTHS. I allowed this fact to ruin my day yesterday, but I won’t any longer. Because, we know that God can do “exceedingly abundantly above all that we ask or think, according to the power that works in us” (Ephesians 3:20-21). So we don’t just want to pray for home nurses. We want to pray for God-fearing home nurses, who are fully qualified, who love children and who will be a good fit for our family. We need to get a minimum of 8 hours/day of help for all 7 days of the week in order to bring Zion home. But we are hoping to get the full 16 hours of help/day that Zion’s insurance should cover.
- Pray that all goals needed to be achieved for Zion’s health will be accomplished before he leaves the NICU for the TCC. Because once he gets to the TCC, the desire is to avoid sending him back to the NICU. Prayer that we will begin to prepare our home as we remain hopefully expectant for Zion’s arrival.
- Prayer for our other two children to have perseverance as we make it through this final home stretch. There are times they cry when mommy or daddy leaves to go to the hospital, so please pray that God would comfort their hearts.
- Prayer that God would soften the hearts of all the medical team who interacts with Zion and knows his story. Pray that the Father would display His glory and draw others to Christ through Zion.