We see the light!!!

On the 18th of February, our little “punkin” reached eleven months old. Hallelujah! We have come so far with Zion as his first birthday is now officially in close sight! Lately, the medical team all seem to repeat the same thing, “He’s getting so big!” Zion is continuing to grow and is currently 20 adorable pounds of pure grade Heavenly marshmallow. I simply cannot describe to you how kissable his creamy face is. ☺️

Not long after my last post, Zion started acting “funny” with some of his vital signs. His heart rate and CO2 were both consistently staying a little higher than normal. At some points he had mucus in his nose. And one night he even spiked a fever. That lead the team at the hospital to do a full work up to check to see if he was getting sick with a virus. They also proceeded with their routine course of preventative action by getting Zion started on IV antibiotics to catch “it” early, if he was indeed coming down with something. It was hard to fight the temptation to dwell on the thought of how much longer we would have to continue our hospital stay if Zion got another cold. But thanks be to God, those symptoms never really turned into anything. Everyone seems to agree that it simply just might be teething. Our little guy just got his third bottom tooth! These tooth eruptions have been back to back, so Zion has been fussier than normal which is to be expected. Tylenol and Ibuprofen have been his best friends lately.

The Lord is always right on time with giving me what I need to hear for the season that I am in. I was listening to a sermon on the radio while driving to the hospital the other week – the pastor was was discussing trials. He mentioned that the progression of events goes something like this: Trial -> Testing -> Endurance. He said that while in the trial, we should analyze how we are responding, because that reveals our true faith. I found this to be so true. I have discovered so many areas where my faith is still small and needing growth – and they often appear during some sort of a setback with Zion… when my expectations don’t pan out.

Then the following Sunday I was blessed at church as God continued to drill into me a similar message about trials. Our pastor mentioned how “it’s easier to simply obey God, than it is for God to send difficult circumstances into your life to test whether you will trust Him.” It’s so true! Trials truly are where the rubber meets the road in this Christian journey. He went on to say, “You learn if you are trusting God when it’s dark, when it’s hard, when it’s not what you would choose. And it’s not a feeling, it’s a mindset. As a mindset it changes what you think you can do next, and what you choose to do next.”

Yes and Amen! He said it perfectly. Faith opens the door to an entirely different way of responding to trials. And I can attest that the way of Christ is the way that brings true peace. I have been praising God lately for these trials he divinely places us into, because it has been revealing so many weak areas within my myself that I can then bring before Him for growth. It is so encouraging to know that these tests are actually shaping and molding our character to be more like our Savior – and I can actually see so many of these changes in ourselves taking place right now. That makes the difficult trials so very worth it. We are masterpieces in the making.

We have many updates, but I will start with the most exciting one. Zion’s current discharge date is set for this upcoming Monday, March 9th! Please keep praying for Zion to stay healthy, because at this point that is the only thing that could cause him to be delayed coming home.

Next up – GOD ANSWERED OUR PRAYERS – WE FOUND A HOME NURSE!!! Thank You Jesus! And thank you all for your faithful prayers! The story of how this all came to be is nothing short of a “God thing”. Our home nurse had been working a very difficult nursing job in dialysis and was looking to make a change. Before that job though, she actually used to work for our current nursing agency that has been recruiting nurses for us. One day, our nursing agency randomly called her to see if she would like to come back, to work for “a family” (us) that lived close to her that was trying to bring their baby home. She had no experience in pediatrics, so she responded that she wasn’t interested. BUT GOD later turned her heart to reconsider. So she called back our agency and told them that she would be interested.

So on February 20th I met Sue. She truly is a perfect fit for our family. She’s sweet, humble, mature, incredibly competent, thorough, confident and most importantly, she loves the Lord! Jesus knows that the most important quality I was looking for in a nurse was one who knows Him and prays to Him. I know there is nothing more important that a nurse can do for our son in a crisis than to first and foremost PRAY to the Lord. And we have found that in our nurse. I have read countless home nursing horror stories in my Trisomy and Trach groups online. So I can’t tell you how much peace this brings me to see the nurse that my loving Lord has selected for Zion.

This is the Lord’s doing; it is marvelous in our eyes.

Psalm 118:23

The other day, she underwent training at the hospital with Zion. She was so eager to learn all that she could. I watched this woman, who had no experience in pediatric nursing, fearlessly do an emergent trach change on my son. Yes you read right. She willingly bypassed the easy routine trach change (that you do with a partner) and went straight to the most difficult and important one she must know how to do. She was so confident and poised throughout the entire process. I was so incredibly impressed with her! I knew right then after watching her in action that Zion would be in good hands. In addition, her kind heart was revealed in the fact that she desires to only work four days a week, but is choosing to start full-time at five days a week in order to fulfill the hourly requirement for us to bring Zion home. I’ve been calling her “our angel”. And here is the most amazing part. She attends our church! Only God can orchestrate something so perfect!!! I prayed for a believing nurse. But never in my wildest dreams did I think that our home nurse was already in our congregation all along! It’s truly something that leaves you speechless and in awe at how the Lord truly loves us in this chapter of our lives.

Did I not say to you that if you would believe you would see the glory of God?

John 11:40

This blog update truly is filled with all the “feel goods”… so there’s more! As you can imagine, we have been busy getting our home prepared for Zion. We reorganized our living room to fit Zion’s crib, the large, rolling commercial bin rack for all of his medical supplies, and space for his ventilator set-up. (And we also are doing the same in our bedroom, since we will have a second vent set-up for upstairs during bedtime). In the meantime, I recently met the folks with Bright Path – Kentucky’s multidisciplinary, pediatric palliative care team that will work closely with us as we go home. They aren’t with us to pressure us to let our son die (as some might imagine palliative care can do), but they are with us to help us best navigate the ups and downs that a baby like Zion will always have. These women are so wonderfully spunky and sweet. It’s like God sent me more angels, because these women have so many resources and truly know how to make stuff happen. I love “movers and shakers”! They took the time when we met to really inquire about our needs for Zion. I’m so grateful to learn that they will come to our home to be there by my side to not only bring me the medical waiver forms we need to apply for when Zion comes home (in order to access more help and assistance), but also to help me fill out the lengthy paperwork the waivers require. (I tried figuring out these waivers by myself a few weeks ago and gave up in frustration after being tossed from person to person on the phone). The Lord truly has gone before me and prepared my way in this.

Literally the day after meeting these ladies they call me asking if we would be interested in a medical bed for Zion. Absolutely!!! Up to that point I had been disappointed that no one at the hospital seemed to be willing to put in an order for Zion to get one of these beds. A medical bed is much better than a crib because they are large to fit a growing child with lots of equipment, and they have mattresses that raise, lower and recline/incline. This is important for Zion since he needs to be inclined most of the time. After hitting this roadblock with the hospital, I started looking up what the cost of the beds were online, since I learned that many of our fellow Trisomy families had them. When I saw the 5-figure price tags, I just closed the page, while accepting that we would just have to use our regular crib that we used for our other children for Zion. I ordered a big foam wedge pillow to achieve the incline that Zion would need. It would suffice. But these ladies said that they wanted us to drive out to this local warehouse to check this bed out.

So the four of us took the (beautiful) drive out to eastern Cincinnati along the river to visit May We Help. This is a local, non-profit organization which makes and repurposes adaptive equipment and devices for those with disabilities. We walked into this warehouse where we found some older gentlemen working in a shop building various things. They walked us over to this large medical bed. It was exactly like the expensive medical beds that I had seen online. It was big and beautiful (big enough for me to lay in with Zion) and reclined and inclined perfectly. And the most amazing thing of all was that it was ours for FREE if we wanted it!!! My heart was so full of God’s love in that place. We accepted the bed on the spot. And the icing on the cake was how one of the kind gentleman took the time to take the bed apart, drive it out to our home, and set it up in our living room that very same day! As the saying goes, “Look at God!” He provided so extravagantly for Zion. For the Lord to give Zion this bed was a sign of such HOPE for Zion’s future. I felt like God was telling me… “Zion’s going to be here for a while.” Check out Zion’s awesome bed – specially delivered by Jesus. I can’t wait to put him in it.

Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.

Ephesians 3:20-21

God is so good. We are now in the home stretch. Thank you for covering us in prayer!

PRAYERS:

– Please pray that Zion would continue to stay healthy, happy and event-free this final week in the hospital. Specific prayer requests would be for continued grace for Zion as he undergoes teething and also for some neck redness and irritation to heal under his trach ties.

– We’ve noticed over the past few months that Zion’s personality and facial reactions seem to be more diminished. I asked the team to have neuro look at him and ensure that his seizure med was at an optimal dosage. So Zion recently underwent an EEG to check his brain wave patterns for seizure activity, since he hasn’t had an EEG since he was very young. Pray that the Lord grants the neurology team wisdom as to what to do based on the results – whether that be increasing or decreasing/removing his seizure medication.

– There have been multiple mamas who have reached out to me wanting to bless Zion with their breastmilk, after I stopped pumping while we were in Omaha. The hospital doesn’t allow us to use it for Zion while he’s an inpatient, so we have waited to take it until closer to his discharge. Well, let’s just say that Jesus has truly multiplied the breastmilk because it overflows over here! We have been blessed with so much milk that we had to buy a deep freezer to contain it all (see below). The Lord’s love for Zion is so apparent! Even though Zion is coming home, all changes to Zion’s care plan need to be made by “doctor’s orders”. Please pray that the complex care team taking care of Zion as an outpatient will be open to us replacing some of Zion’s formula feeds with this perfect nutrition. And we are SO GRATEFUL to the wonderful mamas who blessed our son with this nutritious gift!

– Zion must have trained caregivers with him at all times. So far, that means only three people: myself, my husband, and our home nurse. So, this Sunday is the last Sunday that my husband and I can attend church together, for the time being, until we are able to find home nurses to cover weekends for us. So after this Sunday, one of us will have to stay home with Zion and our other children, while the other attends church service. We will likely take turns back and forth. Our community group attendance will have to operate in the same way. But it is our hope that one day Zion will attend his first church service and first community group with us! Will you pray for God to bless these to happen at the right time?

– Thanks to those who have prayed for our daughter’s eyes. Her doctor feels that unfortunately another surgery is likely in her future because her eye seems to be regressing. We are certainly more concerned about a second double eye surgery due to the higher chances of complication. Please pray that the Lord would direct our steps as to whether or not we should do the surgery. And if so, to guide us to the best timing this year. Also, I sustained an injury to my big toe while recently celebrating my son’s third birthday (41 year olds just shouldn’t jump on trampolines 🤣). I have a case of “turf toe”. Please pray for quick healing!

– Regarding Zion’s first birthday (coming up on 3/18): It was my heart’s desire to throw a huge first birthday party for Zion. I had it all planned out in my head. However, now that we are here, about to bring our son home, we are rethinking that idea. This cold/flu season is a dangerous threat for our baby boy. Seeing one of Zion’s Trisomy brothers get sick after his big birthday party was a humbling reminder of just how fragile our children really are. So, for now, it is our hope to have a big gathering and celebration at some point hopefully this spring, summer, or fall. TBD… may the Lord direct our steps in that endeavor.

-The next time you hear from me will (hopefully) be after Zion has settled into our home. Please join us in prayer that God would go before Zion and prepare his way home. Pray that Zion would be comfortable here. Pray that God would make His grace abound toward us in making the transition to this completely uncharted territory and new way of life for our family a smooth one. Pray for George and I to find a routine that works for our family. Pray that our home nurse would make herself at home in our abode and would quickly bond with Zion. And pray for our children who will need to adapt to new rules and boundaries with their brother and his medical equipment. And please pray that God would help me to sleep well when I have the opportunity, as I will be Zion’s night nurse during the week, with my husband and I splitting the weekend nights. I have a plan in my mind as to how I will handle nights with Zion and, if it works, it will allow me to get as much sleep as possible by sleeping when Zion sleeps (which seems to be through a good portion of the night according to the bedside nurses thankfully). Pray Zion sleeps well at home and can quickly become accustomed to a new routine with us.

We will speak to you all on the other side! To all of our local friends, please stay tuned to the blog as we will inform everyone when we feel settled and ready to accept visitors. It will likely be in early April and/or after cold/flu season has mostly gone. At that time we will schedule visits according to pockets of time that best work for our family. It is our hope that Zion can meet many of the people who prayed for him.

We love you all!!!