It happens the same way each time. When my cell phone rings in the middle of the night, or in the early morning hours, I respond by jumping up from a dead sleep, while repeating “Oh no…Oh no…Oh no…”, as I clumsily grab for my phone in the dark. I’ve lost count how many times this has happened at this point because the frequency of these calls has definitely increased lately. I got yet another call like that this morning. Zion apparently had another significant drop in his heart rate (to the 40s) that was accompanied by decreased oxygen saturation and his body coloring going blue. The team bagged him and gave him a few chest compressions before he woke right up and began crying. Thankfully, he’s been doing okay since the event today. All this on the day our handsome boy turns eight months old. I had plans to bring him balloons and possibly even dress him in a cute outfit for a photo, but God had other plans today as I rushed out of the house this morning.
A lot has happened with Zion since our last post about “Sunday mornings”. Zion ended up having yet another episode the following Sunday morning as well. He then continued to have scary episodes peppering the past couple of weeks primarily involving his heart rate slowing, climaxing with a big episode in the afternoon on November 7th. The hospital called me as I was just a couple minutes away from arriving there for my daily visit with Zion. All they told me was that he had a code blue event, he did have a pulse, and I needed to get there.
After arriving, the attending on duty showed me on the computer how his heart rate started going into a very slow rhythm (bradycardia) until his little heart just stopped. The team had to do chest compressions for about 45 seconds and thanks be to God, he revived. This is the third time that Zion’s heart has stopped. This has really been troubling me because Zion has never had issues with a slow heart rate before entering the PICU (with the exception of one random time when he was younger). Lately, he’s having these bradycardia episodes just about every day – and no one seems to have a good answer as to why. I’m a woman who loves to figure things out, so it’s been hard to not know what is wrong with Zion. There have certainly been a lot of prayers to God for His wisdom to reveal the diagnosis.
At this point, Zion is mostly recovered from his Rhinovirus and the corresponding coughing fits. However he’s had some new developments surface that we are now trying to figure out. One of them being that he’s had issues lately with digesting his formula in a timely manner, so we will now explore to see if he has any gastric motility issues. The yellow tube you see in Zion’s right nostril is to feed him directly into his small intestine, bypassing the stomach – called an “NJ tube”. This was put in after he had the first cardiac arrest, in order to minimize the risk of reflux when feeding him, since he recently started developing issues with that.
The tube you see in his left nostril is a NAVA catheter that is used for his ventilator. Zion recently tried a new ventilator mode (NAVA) after the cardiac arrest which is basically the closest a ventilated person can get to breathing exactly how they want to breathe. With this mode, a nasal catheter with electrodes is inserted down to the bottom of the stomach. The electrodes sense the varying movements of the diaphragm, which then tells the ventilator the exact type of each and every individual breath to give the patient. With all the other modes, the vent breaths are static and unchanging. NAVA however is able to adapt and adjust to Zion wanting different types of breaths at different times, just like how we normally breathe. Not surprisingly, this was the most comfortable I’ve ever seen him breathe. And it helped him quickly recover from the cardiac arrest. However, NAVA is not a mode that is available on a home ventilator. Therefore it’s in Zion’s best interest to not get used to it since our goal is to get him home one day – so he has since come off of that mode. But the team desires to leave the nose catheter in just in case he needs NAVA again to help recover from a future episode.
We have had some hard moments the past few weeks. We found some unexplained bruising on Zion’s right knuckles. After asking for an x ray of that hand, we got multiple different answers as to what the x ray showed – ranging from it being a fracture, to it not being a fracture at all. So far we have been unsuccessful at getting a second opinion on this x ray from outside the institution. It’s frustrating to see that your baby sustained an injury and to have no idea how it happened. There are so many possible explanations though, and in the end, we had to make peace with simply not having an answer. In addition, we are still trying to get acclimated to the many differences of being in the PICU, compared to the NICU and the TCC.
However, we have had some lovely moments as well over the past couple of weeks that we want to praise the Lord for.
– Zion is 8 months old today! Each month seems to be flying by. And we know that every day of our son’s life is by the grace of our God who is upholding him. Thank You Jesus for getting us closer to seeing our son possibly turn 1 year old!
– I learned that kissing the soles of Zion’s feet makes him smile!
– Zion got to enjoy his first taste of real food – PEARS! We have been given the go ahead from the team to give him small (1mL) “pleasure feeds” every day. I wasn’t sure if his oral aversion (due to never eating by mouth) would be a hinderance, but so far he seems open to exploring this new taste sensation. I’m so happy that my son FINALLY gets to experience the amazing flavors that God created.
– We have made good progress with advancing Zion’s developmental activities – in particular laying on his belly in his bed (or on mommy’s belly). We try to get him on his belly every day because being prone is a wonderful position for a ventilated baby as it helps the lungs to fully expand and oxygenate (evidenced by his very high oxygen sats when I hold him this way). Not to mention it obviously feels Heavenly to a baby used to being on only his back and sides 24-hours a day. The team was so kind to allow Zion to be moved to an adult bed in order for me to get in with him so that I can hold him on my belly more comfortably. So I’ve been able to focus on giving Zion the very best quality time during my visits. And we are delighted to see our son make attempts to push up with his hands, make crawling movements with his knees, and even attempt to roll over on his own. Our boy is growing up!
– We are beginning to assemble a PICU care team for Zion so that he can have consistent nurses care for him. So far he has one day nurse and might possibly now have one night nurse. His day primary nurse comes with a lot of experience (being that she’s also a charge nurse) and she truly loves our son and holds him for hours during her shifts. When we know that Zion’s primary nurses are working, it does wonders for putting our hearts at ease when we’re not there. Hooray for some consistent care!
– The good news as of Saturday was that, if Zion continued to have good days with no bad oxygen desats or low heart rate episodes, that they might consider switching him back to his home vent right there in the PICU to try it out again in the safer environment of the ICU. Provided that goes well, he could then make the move back to the TCC where we can resume his preparations for coming home (finishing our training and recruiting our home nurses). Thankfully the episode this morning didn’t concern them from continuing with that plan for Wednesday, as long as no other issues happen over the next two days.
– Consider this final line as more of an exhortation. I have had so many people approach or write to me thanking me for this little blog of mine. And there’s most definitely a common theme to what they are grateful for. It seems that people are so hungry for hope. And they are also eager to see how God moves in the lives of others. That has been the primary purpose of my blog (behind updating friends and family about Zion, of course). I’ve been encouraged by this to be even more bold in proclaiming to perfect strangers that I meet about what Jesus has done and is doing in our lives. But I wanted to also share that as an encouragement to other believers to please do the same in your own life! If you follow Jesus, hopefully you have seen Him at work in your life. So please share those stories with others who cross your path who seem to be looking for hope. And if you haven’t seen Jesus at work in your life, ask Him to give you the grace to see it, so you can then share with others. I trust that He will, for His glory! Let us redeem the time we have here on Earth by sharing all that God has done for us! Let us never forget his mighty acts and deeds. One way to never forget is by documenting or journaling, in order to continue sharing the testimonies of the glory that you have seen.
We recently had our first PICU care conference to discuss the ever-changing plan for Zion with the the majority of the multi-disciplinary team caring for Him all in one room. We learned at this meeting that not everyone has hope that Zion will become stable enough again to leave the PICU to get back to the TCC. That was surprising to hear that some on the team had already given up hope. But we stood our ground in that meeting and continued to proclaim the hope that we have in God. My husband so aptly reminded me the other day that so many things are impossible with man, so it’s no wonder they lack hope. But we know that “with God, all things are possible.” That is the hope we will continue to cling to. So we know that God can indeed Get Zion back to the TCC and back home, if that is His will. We also continued to ask the team for our specific goals for Zion to be achieved. The primary goal remains unchanged – get Zion home ASAP. The other goal is to try to get answers to some of these new heart symptoms Zion has developed – so we are trying to turn over every rock that we haven’t checked under as of yet in order to rule things out.
At times I struggle with guilt over the periods of time when I am not with Zion at the hospital. It feels so wrong to leave your baby in a place and go home, without them. But God truly gave me His peace the other day. I felt like He whispered to my soul, “Zion isn’t just for you and George. Zion is for many people.” I realized in that moment how true that was. He is touching lives and blessing so many people within every hospital where he has been a patient. We have former nurses still following his story online. Current nurses playfully competing for who will get to care for Zion for their shift. One doctor who came to do a procedure on Zion exclaimed how excited she was to get to do an echo for “Baby Zion”. He’s showing so many doubters in the medical field how strong a Trisomy 18 baby can be. He’s boggling the medical team as his little body perseveres, defying his dangerously low vital signs at times. Yes, Zion does indeed have a ministry right there in the hospital. I felt myself surrender in that moment to the reality that Zion is not mine or my husband’s. Yes, Zion was given to us as a gift, only for a time appointed by the LORD. But he is and always will be God’s child, from everlasting to everlasting, and will be used for His purposes and for His glory. So we now say, “Have Your way Lord… even if Zion coming home isn’t part of Your grand plan.”
In closing, I want to thank everyone for praying for my friend. Not long after that prayer request, she passed away peacefully at home with her husband, daughter and mother present. Her service was beautiful, I have peace that my dear friend is now fully healed and with her Savior. I recently found out that one of my uncles has cancer as well (lymphoma). I told him recently that I would be praying for his healing, and do you know how he responded? He said, “Should we not be speaking directly to God for the spirit man to increase strength, than just over the body? Does not strength come from within?” I marveled at his answer – what great faith!!! Asking for healing when sick is what every person of faith naturally does. We strive for our bodies to live on and to be well. But his answer was so full of wisdom in that he only asked that we pray for the greater thing – that his eternal spirit would increase. All I can say is, “Wow”. So, in honor of that statement of faith….
– Pray that God would increase the strength of the inward spirit man within my uncle, and also within Zion. “Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.” – 2 Corinthians 4:16
– Please pray that God would grant wisdom to the team to determine the specific cause of Zion’s drops in his heart rate, as well as the cause of his slow digestion of feeds.
– Beg God for His mercy in that Zion would undergo no more cardiac arrests!
– Lately Zion has been having much lower oxygen saturations at times. Pray that those would stabilize and be sustained at his normal higher levels.
– Pray that Zion can get a complete PICU care team (of 2 primary day nurses and 2 primary night nurses). We ask God for nurses who will show him the love and affection he desires and be willing to hold him often when we are not at the hospital.
– Prayer that our family would stay healthy this cold and flu season, for Zion’s sake. We’ve made the choice to keep our children out of large gatherings with other children for the time being in order to prevent Zion getting another virus. This means the kids are missing out on the wonderful experience of church on Sundays and weekly small group meetings as well.
– Prayer for comfort and peace for our 2 year old son as he endures major separation anxiety lately when mom and/or dad have to leave the house.
– Yesterday was my first day back at church in about a month. Multiple Sunday morning episodes with Zion, and a trip to Virginia for my friend’s life celebration took up my last few Sundays. And occasional evening visits with Zion and having an increased priority on spending quality time with our other two children has caused our community group attendance to be spotty at best. Oh how I missed gathering together with the Body of Christ on Sundays! In Hebrews 10:25, God tells us “do not forsake the assembling of ourselves together”. And while we haven’t been absent deliberately, I literally felt like my spiritual vitality was weakening week by week being away from the church body and the edification we receive from being in the midst of it. So please pray for no more Sunday morning episodes with Zion. I love our church family dearly and need to see their faces regularly.