Grace to you and peace be multiplied. – 1 Peter 1:2
Jacob blessed and prophesied over his sons before his death in Genesis 49. In the same way, I chose my children’s names very specifically and prayed blessings over them after birth, in faith that those blessings will one day come to pass. So far, I’m seeing that there is something to this naming thing – as I’m already seeing fruit in each of my children based on the names I chose for them and the corresponding blessings I prayed for them. I chose Zion’s name because in Psalm 132:13, the Lord reveals that He “has chosen Zion” and that He “has desired it for His dwelling place.” There is nothing more I can want for my son Zion than for God to choose him and dwell in him. But the scripture pictured above that someone gave us a couple months ago has become a close second in regards to Zion’s “flagship scriptures”. By the grace of God, Zion has come back from death multiple times in just 6 months of life. So the scripture above is perfectly fitting for our son. Because as God continues to sustain Zion despite each scary episode that happens to him here on Earth, it seems like it’s a reminder that Zion will indeed live forever, starting here on Earth, and transitioning one day to eternity with God in Heaven.
The most recent scary event happened a week ago – this past Monday morning. I got a phone call from the hospital just before 6am, so I knew that something bad had likely happened. The APN told me that Zion had just had a serious code event. After his monitor began alarming, the bedside nurse apparently found Zion “rigid”, with no heartbeat, and pupils that were fixed (non-reactive to light). The nurse told me that they began to bag Zion and (thanks be to God alone) his heart began beating again shortly after they started giving him breaths. She reassured me that he was okay but they were bewildered as to what could have caused this. I don’t know about you, but that sounds like our son has come back from death yet again!
I had to take the kids with me to the hospital that day, so I couldn’t go immediately to see Zion. But as we were getting ready, I had a strong feeling as to what likely happened. Zion’s circuit (the blue/white tubing that carries his inhalation/exhalation breaths) tends to collect water due to condensation. This water can work it’s way down to the little clear hub that sits right below Zion’s trach. If the circuit is tipped upwards high enough, that collected water will pour right down into Zion’s trachea, quickly shocking his system to near death. Sometimes his arm will be positioned under his circuit in a precarious position, and when he stretches or goes to lift his hand to his mouth, he can tip his circuit upwards. This actually happened months ago when Zion was younger and it almost cost him his life. I believe this is what happened with Zion. I can’t prove it, but based on how they described the episode, that’s the most plausible explanation. Especially considering the fact that we recently had a small fan brought into his room to keep Zion cool. Some nurses lately have been facing the fan directly at Zion (a big NO NO) – because the cold air against the warm/humidified air in the circuit is a recipe for increasing condensation. These are one of the many reasons I can’t wait to get my son home ASAP. The bedside nurses overall do a great job. But they have oversights. And when it comes down to it, no one watches a baby more closely than the parents, who know that baby inside and out. Come home soon baby boy!!!
When the kids and I got to Zion later that morning, the nurse had him in the Mamaroo. I could tell by his coloring and demeanor that he had been through a rough morning. I can’t imagine how it must feel inside your body just hours after your heart stopping!
Within a couple hours though of TLC from mommy, sissy and brother, Zion was already back to his normal self. Look who now reaches for mommy by the way! This melts my heart more than you know!
I got another panicked call though from a nurse practitioner this afternoon literally as I walked in the door to my home after visiting Zion at the hospital. His oxygen saturation dropped into the 40s and 50s while he was sleeping and they couldn’t get it back up. He was calm, but he did have a concerning (dusky/gray) color change which is not typical for him. After multiple “vent breaths” of 100% oxygen, they decided to bag him. That apparently didn’t help – and after some time the episode sounded like it resolved on its own. And that’s when they called me. I am really starting to suspect that Zion is communicating through his oxygen sats. We have walked into a room where he is “low satting”, to then see him dinging off the alarm because he’s “high satting” (and very happy) once we pick him up. And we have also seen his sats drop back low shortly after putting him back in bed when he realizes we aren’t holding him anymore. As usual, the medical team is perplexed as to what was going on, but my mama instinct is telling me that he just might be sick and tired of being in that hospital bed and being away from his family! Oh how I wish I could be there with him full time again.
Interestingly, a couple hours before this I had the pleasure of meeting a fellow Trisomy mama who I have been corresponding with online, who’s daughter was in-patient just two doors down! We were sharing testimonies today of God’s amazing works and faithfulness in our children’s lives and I had the opportunity of praying for her daughter and she also prayed for Zion. I know that, without a shadow of a doubt, that Zion recovered so quickly today because he had a Holy-Spirit filled woman of the living God walking past his room praying and keeping watch over him. God is so awesome in all of His ways. The timing of our fellowship was perfect and it was just what both Zion and I needed. Being around those who are “on fire” for the Lord is like a double shot of the Holy Spirit as it gives literal life to my soul. I was full of the joy of the Lord after meeting with her!
As far as some other updates, I spent some time this past week talking to the neurology team as well. It’s been on my heart to talk to them since I’ve noticed that Zion seemed to be declining cognitively the past few months of his life. Go figure, after putting in the request for a consult with neuro about a week ago, Zion then had a strange episode where one of his pupils was larger than the other, and he also was more sleepy than usual. The TCC team seemed to think it could be seizure activity. Zion’s been on a seizure med since he had his first EEG as a baby, but that med was due to be weight-adjusted (increased for his weight gain), so they hypothesized that possibly he had a breakthrough seizure since the current dosage of seizure med was now “sub therapeutic” = ineffective. The neuro team however didn’t think that pupil episode was seizure activity. They feel it was likely due to issues in his brain stem. The neuro team never thoroughly went over Zion’s brain with me when he was young – so I was grateful to finally get more info during their recent visit as to what’s going on in his brain.
If you look in the photo above, you will see three brain images. The images on the right and left are Zion’s brain from back when he was younger. The image in the middle is a normal brain. Zion has a large amount of fluid in his lateral ventricles (the large white spaces in the image on the left). The doc explained that the fluid is coming into those spaces passively because Zion’s brain is smaller than a normal baby his age. As you see in the center photo, the lateral ventricles are normally tiny. Then in the photo on the right, you see a lot of black in the top left and top right sections of Zion’s brain. This is basically empty space where brain matter should be. Zion basically has deficits in his brain stem, corpus callosum, pons and cerebellum areas. The doctor explained that the episodes where Zion’s heart has stopped were likely damaging to his brain (in particular the cardiac arrest he had in the cath lab back in April when his heart stopped for over 5 minutes). I didn’t want to face it, but I had to. I have indeed noticed that Zion’s personality, expressions and visual tracking have all seemed to decline since then. We will never know for sure what’s causing the changes, but it would make sense that episodes where his brain was oxygen deprived could certainly be the culprit. It’s hard to accept that your baby might not be the same person anymore. But we of course love him just the same and will continue to hope in the Lord!
Now let’s talk about Zion’s vision. I’ve noticed for quite some time that Zion no longer looks at me directly, and also doesn’t seem to track with his eyes well. The ophthalmologists have determined that his vision is perfect but that his optic nerves are thin and weak. They also can’t say for sure what he can or can’t see, but they suspect that he might only see light and dark figures/shadows. And if that is the case, they assert that it is because of something wrong in his brain processing the visual signals. Based on the brain imaging report I got from the neuro doc, this makes sense. Zion not really being able to see might be a heartbreaking thought for many, but we don’t want anyone to fret about this. We truly believe that seeing or not seeing, Zion knows he is loved by God and by his family. And from now on, we will just try to make sure he can really HEAR and FEEL the love, now even more than before. And alongside these actions we will continue to have faith that God can still perform healings and miracles today, so we will continue to pray for all of Zion’s “defects”, and we ask you all to join us.
The other little issue Zion has been having is with his G button stoma (the hole for his feeding tube that goes into his stomach). This has been bleeding for a couple weeks now. Some on the team think it’s something called granulation tissue (where the skin attacks the foreign substance in the body), while others feel it could be a prolapse (where some of his stomach mucosa is actually coming up through the stoma). I always come with a hypothesis as well, so I personally think it’s the latter. It is very sensitive to the touch and must cause him pain because he winces when we clean it. I really want this to heal. Not only because it causes my son pain, but also because it’s often leaking his feeds. The team will be putting in a slightly bigger/longer G button since he is due for a size up since getting bigger over the past month. Hopefully this will decrease the pressure in that stoma area. Would you please lift this in prayer as well? Here’s what it looks like if you’re curious.
Many positive events have transpired since my last blog update. We want to praise the Lord for the following:
Continuing to uphold Zion’s life in order to display His glory! Zion continues to amaze the medical teams. Please be praying that we will continue to boldly declare the reason for his continued life. The grace and mercy of our Lord Jesus Christ.
George and I did our first trach change together! It felt good to work together as a team to accomplish this very important task that we will need to regularly do together at home.
Zion has a full care team! You might recall that Zion can have “primary nurses” assigned to him. These are nurses who will always work with Zion during their work shifts. This is so helpful both for Zion and his nurses to have that familiarity. In the NICU, we weren’t able to recruit a full team, so Zion only had one primary nurse at a time. But here in the TCC we now have a full team (2 day nurses and 2 night nurses). They come with a lot of experience, are respectful of our wishes and concerns as parents, and most importantly they seem to love our son in a special way. Yay for care teams!
The team is on board with us wanting to “flip” Zion to the home ventilator ASAP. But when he has episodes like we described above, it does make them want to pause for a bit – and we are okay with that. The plan for now is to consider flipping him before the end of the week. I will be sure to capture this momentous occasion on video. Please be praying that the flip is a success whenever it does happen. If it is, it is one step closer to Zion coming home. And we will also be able to take him for walks OUTSIDE here at the hospital!!!
Our dear mother Celia has officially arrived! This couldn’t come at a better time as so many things have been going on with Zion, and I could really use consistent help with child care again. And it’s an incredible blessing to me to have the regular, daily, in-home fellowship with my sister in Christ.
Eden got to watch mommy do Zion’s trach cares/tie changes and also helped give Zion a bath for the first time. She did a great job! And later she performed her first trach change on her little leopard. It’s never too early to get them started on helping!
Special prayer request: Another baby from the Omaha Trisomy Tribe recently went to be with Jesus in Heaven. She lived 83 days to the glory of God with the most unique and complex heart Dr. Hammel has ever seen, one that wasn’t even in any medical literature. Please pray for the comfort of Baby Selah’s parents. She was fearfully and wonderfully made indeed.
In closing, I have one last prayer request – for yours truly. But first, I want to share a quick story. My husband regularly has “dreamed dreams” that we are convinced come from God. They have consistently been very timely and prophetic in nature and the way he vividly describes them have always amazed me. When George tells me he had an interesting dream, I always stop everything and listen. He had one a couple nights ago that he shared with me the following morning. Here’s how it went…
Our family was in a parking garage with our vehicle. George was up front, our 2-yr old son was in his seat (our daughter wasn’t in the dream), and I was putting the stroller into the back of the van. All of a sudden an “evil man” approached me and began to attack me. George said that this man was very angry with just me in particular and he began to wrestle me in the back of the van while yelling at me. George jumped back there and began to attack the evil man until he relented from fighting me. The man seemed to finally be “disarmed”, but for some reason the evil man didn’t want to leave the van.
After telling me the story, George felt compelled to pray for my (spiritual) protection. This isn’t the first time my husband has had dreams starring him and I and an “evil man”. The other times he’s had these dreams, I have boldly defied and withstood the enemy to his face. But in this dream I seemed weaker and more vulnerable. I felt the dream was complete confirmation. I have been experiencing some intense spiritual warfare the past couple of weeks in particular. I feel “hard-pressed on every side” and that it’s coming at me from many different angles, and they are all each weighing on me strongly. One thing I have learned since walking with the Lord is that when I set my heart to do something to glorify or honor the Lord, I ALWAYS face opposition in some way.
For a great and effective door has opened to me, and there are many adversaries.1 Corinthians 16:9
Those of us who have been given these Trisomy miracle babies, and who choose to value their lives by fighting for them and being their voice, have had a “door opened” to us by God. And as we faithfully choose to walk into that open door, I know I can speak for every Trisomy parent in saying that there are indeed many adversaries. Why? Because the battle is a spiritual one. We are proclaiming life, liberty and justice to “the captives” and the enemy wants to stop it at all costs. As the Trisomy mother and I were talking today, we acknowledged how Death literally hovers outside the doors of these special babies, because they are miracles that glorify their Creator. But we rest in the fact that a sovereign God, who loves them infinitely more than we could ever imagine, has them in the palm of His hand.
I need to draw closer to the Lord during this time. My daily morning quiet/devotion times have been short, so please pray that I can have longer times with God (which likely will involve me being diligent to set my alarm and get up very early). I also am somewhat of an introverted personality. I need a fair amount of time in a day to be quiet, not speaking to anyone, not hearing any talking or noise, where I can ponder things in my mind. And when I don’t get that time in a day, it slowly starts spiritually wearing me down, and the subsequent sin starts abounding. Pray that I would put on the full armor of God for the daily battle. And pray that God would give me boldness to press forward in the Spirit’s leading and not draw back in fear.
Despite these challenging times for me spiritually, Jesus continues to be an anchor for my soul. As my Aunt Mary said once to me, “What is over our head is already under God’s feet.” AMEN!!! And I am resting in His truths and promises, like Psalm 125:1 above, or the following verses, which put a lot in proper perspective for me. I know that my faith is, and will continue to be, tested.
Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has begotten us again to a living hope through the resurrection of Jesus Christ from the dead, 4 to an inheritance incorruptible and undefiled and that does not fade away, reserved in heaven for you, 5 who are kept by the power of God through faith for salvation ready to be revealed in the last time.
6 In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, 7 that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, 8 whom having not seen you love.1 Peter 1:3-8