Shrinking, in a good way

Zion John – 8 months old

My uncle said to me a couple months ago how God called us to this mission with Zion in the same way He called Noah. Noah didn’t feel equipped or have the skills, but God called him anyway, and Noah pressed forward and trusted God. That’s what my husband and I are doing. And I’m clinging to that bit of encouragement today.

I’ve had doctors mention to me a couple times during this journey how I’m “always so composed”. Of course, I attribute it to the strength and grace as given to me by the Lord by declaring to them that, “God is my strength.” But lately, my emotions seem to be much more on the surface, and can bubble over and reveal themselves despite how hard I try to contain them. I had my first PICU nurse that made the hairs on my neck stand up with how unfriendly she was to me. A bad nurse can elicit immediate raw emotion because it makes me fear for Zion’s safety and well-being when I’m gone. This has only happened 2 or 3 other times in our son’s life, and when it does, I immediately provide feedback and ask charge to not assign them again to care for Zion. In addition, weariness from being in the PICU and wanting to go back to the TCC has also brought some tears. But I’m grateful that those days are few in number because God has been so faithful to always renew my spirit and mind when I ask Him.

And while our other two children have had mostly good days, they too have had some difficult days mixed in there as well. On the hard days, they struggle when both George and I go to see Zion at the same time. Our sobbing 2 year old fights for his life to pry open the door we’re attempting to close. It’s been so hard for him to say goodbye. He’s been climbing in our bed more at night just to get more time with us. And our 4 year old lamented the other day saying, “I want daddy to go see Zion right after work and you to stay with us. I don’t want anymore babysitters. I wish there were two of you guys.” I understood what she was saying. She wants one mommy and one daddy for home, and another mommy and another daddy for Zion at the hospital. I wish that could be true! In addition, my kids have officially made the transition to calling me “Yiayia” more than they call me “Mama”. I sometimes cry to God and say, “I just wish I could stay home and have all my kids there in one place!”

Despite the hard days, we continue to experience God’s love in this journey and are experiencing healing in many ways through what little Zion’s life has done, and is doing, in our lives. I will share more about that specifically in a future blog update.

I want to begin by sharing a praise report with Zion. Today marks 2 1/2 WHOLE WEEKS that Zion has remained on the home ventilator! Thank You JESUS! At this point, it’s safe to say that he can maintain on this at home. This is a huge and very important milestone and we are so grateful that the Lord has given Zion strength to persevere in this!

Another praise report is that Zion has only had one isolated bradycardia episode (that happened today actually thanks to pooping) since the team started him on a medicine for reflux. So it seems that the cardiologist might have been right in suggesting that reflux might have been causing irritation to his vagus nerve, which in turn caused the heart rate drops. That was a very concerning time that bewildered us all since it started so abruptly, so we are glad that appears to be (mostly) behind us for now.

Oh, and Zion found his thumb. How cute is that?! He tends to rub his thumb back and forth on his gums. One of his primary nurses thinks she saw a bottom tooth starting to appear – so our little one could finally be cutting some teeth soon as he approaches 9 months old. Better late than never!

Since Zion has been in a good “sweet spot” where he hasn’t really had any acute issues happening, we wanted to take advantage of that and push to advocate for Zion going back to the TCC so we could resume our home-going plan. My husband and I had a care conference this week with the team, and we left feeling pretty encouraged. Everyone seemed to be open to the possibility of a transfer soon if Zion continued to prove himself by doing well.

The one decision that did make me nervous though was the team’s desire to change Zion’s care plan from being a 1:1 patient (where his nurse only cares for him), to a 2:1 patient (where his nurse cares for him and one other patient). The reason for this is because that is how Zion will be cared for in the TCC – so the TCC wanted to test him in this before transferring him. This is basically a decrease or a step down in the level of care Zion gets. He will get a little less time with eyes on him. The response times might be slightly slower. I will be honest, it makes me nervous implementing that change in the PICU. God is definitely going to test and grow my faith to new levels through this change alone.

Early last week got off to a somewhat rocky start. Zion had a higher than normal heart rate and was very fussy during most of his awake time – something that isn’t normal for him. I normally would suspect him getting sick again, but he wasn’t spiking the typical fever. When I know something is wrong with Zion, I do feel it’s my responsibility to try to find an answer (or advocate for the medical team to look for one) to best of our abilities. I had a hard day early this week where it seemed like all I got was “No”s or wanting to “wait and see” in response to my requests of the team. So I told the NP, “That’s fine. Then I’m just going to stay here until we figure it out.” At times I feel slight apathy from the medical team, and I need them to keep pushing with us for Zion’s sake.

God was with us though, because by the end of that same night and gave us an answer. Zion happened to have the “dream team” caring for him that night. His bedside nurse and two of the RTs came in his room, empathized with my concerns, and hunkered down to look into what could be causing Zion’s fussiness. I knew immediately this was orchestrated by God. They focused on the ventilator at one point. One RT noticed some water in a pressure line, caused by his vent circuit tubing being placed upside down. This tubing should always be right side up in order to prevent water in that pressure line. She flipped the circuit right side up and then used an oxygen valve to blow the water out of the line. Right away I heard her say, “Oh yeah. That did it right there.” And I watched my son immediately settle down, close his eyes, and fall asleep. THAT was it! Staff who go above and beyond in this way, who genuinely have a desire to fix things that are wrong, are what make this journey much sweeter. I was so grateful for their diligence and I’m sure Zion was too! And it was an important learning situation for me as well to prepare for when Zion comes home. After doing this almost 9 months, I can say one thing with absolute certainty – when a baby on a ventilator is randomly fussy and agitated, when in doubt, CHECK THE VENT! So many issues arise when the vent settings need tweaked or tubing needs attended to.

Our hope is that this is the week that Zion can transfer to the TCC. Of course, I can’t say that for sure, because it’s dependent on the TCC being willing to accept him, a bed space being available, and Zion having no big issues. I’m sad to report that this delay of Zion being in the PICU has caused the few nurses that we recruited from posting ads on social media to move on to other jobs. Talk about taking the wind out of your sail….

In light of that, there’s a scripture that shares how John the Baptist once contrasted Jesus and himself by saying,

“He must increase, but I must decrease.”

John 3:30

I can say that I’m beginning to understand this truth on a deeper level at this very specific point in our journey with Zion. These constant setbacks which are the life of a Trisomy 18 baby are so incredibly humbling and are requiring submission to God and His ways on a much more than before. The only way I can describe what’s happening to me is that I’m becoming less of myself. I feel that I am decreasing, as John said. My plans, my desires, my abilities, my confidence. It feels like I’m literally shrinking and becoming smaller. I’m being brought lower through this season that is growing so much bigger than I can handle on my own. But please don’t feel badly for me. I know that this is a good thing because of what God has told me in His word. In the life of every believer, God must increase, as we die to ourselves. He is becoming greater in me through this humbling trial. And there is nothing I want more than that. Less of me, more of Jesus IN ME.

Despite yet another setback, we will keep in our hearts something said by our 4 year old daughter the other day. She said, “When Zion comes home, God’s going to be in our house.”

I’m choosing to just keep that beautiful vision in my mind.

Amen my daughter. Amen.

BIG PRAYER REQUEST:

We knew this day would come eventually. Our dear mother Celia will be leaving us at the end of next week. It will be just our little family again (after a quick visit by my parents next weekend). This is a big deal because with Zion still being in the PICU, we cannot take our kids to visit him since young children aren’t allowed. And we are choosing not to have our friends with small children to watch our kids this winter in order to keep them as healthy as possible to avoid passing another virus to Zion. So we are praying for God to move Zion back to the TCC ASAP – ideally by the end of this week. This will not only allow us to resume Zion’s home-going plan, but also will allow me to visit Zion during the day with my other children. Please pray for soft hearts in the decision makers who make up the consultant team who will decide when Zion transfers. Lastly, please pray for Zion to stay healthy and free from sickness which would prevent him from leaving the PICU.

Thank you and we will keep you updated!

15 pounds of pure preciousness!

** Special prayer requests: This has been a hard week for two families in our Omaha Trisomy Tribe. One family from Kentucky that we came to grow close with while out in Omaha buried their daughter on Thursday. They gave up everything to pick up and move their family to Omaha to fight for their daughter’s life. Please pray for God to provide for their needs (they have 3 other children) and to give them comfort during this time of grieving and healing. And another family in the tribe has a daughter that suffered a cardiac arrest for almost an entire hour after battling a cold virus for some time. We found out today that while the team was able to bring her back, she is currently showing no brain activity. Please pray for this family as well as they potentially have to say goodbye to their precious daughter soon. This family has two other children as well and have been through quite a journey.

The Lord is righteous in all His ways, gracious in all His works. The Lord is near to all who call upon Him, to all who call upon Him in truth. He will fulfill the desire of those who fear him; He also will hear their cry and them. The Lord preserves all who love Him.” – Psalm 145:-17-20

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