It’s official, Zion has a DISCHARGE DATE on the books – February 4th it is! It’s hard to believe this moment has finally arrived! Now I must temper this amazing news by also sharing that this doesn’t necessarily mean that Zion is guaranteed to go home on this day, because we must first have our home nursing care hours lined up. But the discharge date was a necessary step to get the nursing agencies to begin recruiting for home nurses for Zion, and we praise the Lord that we have finally come this far! It truly felt surreal to hear an actual date thrown out in our care conference last week.
So for this month George and I are intensifying our training in order to finish most of it up by the end of this month. We want to be ready in the hopeful event that we get staffed with nurses quickly. We are learning many things, such as: how to “bag” Zion (resuscitate him with an Ambu bag), how to work and troubleshoot his ventilator, how assemble the trach circuit for his ventilator, how to administer breathing treatments, how to go “portable” with Zion to take him places, and of course CPR techniques. The training will end with “rooming in” that dad and I each have to do individually. This will be simulating life at home with Zion if we didn’t have a home nurse. We will stay at the hospital with Zion for either two separate 12-hour shifts, or one 24-hour shift, to provide all of Zion’s care and medication management (with hospital staff there for support if needed). So far we’re making good progress and are about halfway through.
Some have asked me, so I thought I’d share some updates on Zion’s growth stats. Overall, like most Trisomy 18 babies, Zion is smaller than normal for all measures. Here are his most recent measurements: Length – 62cm (not even close to being on the charts), Head Circ – 42cm (just made it onto the charts), Weight – 17.4 lbs (about 15th %tile). We of course think he’s just right. Perfect in every way. Made in a very special way, on purpose, by His Creator in order to display His glory. ☺️
We want nothing more than to have Zion home for his first birthday in mid March, so we are hoping in God for that to happen. As we wait on the Lord, I wanted to share three amazing dreams and visions that my loved ones have had recently about Zion. First, our daughter shared the other month about a dream she had of Zion walking around his hospital room in circles. The other day, George had a dream where we were all at home, and Zion (a few years old at the time) was walking around all of us in a circle with a big smile on his face as we all watched him with delight. And I recently found out from someone who is like a “spiritual dad” to George and I, that he had a vision of Zion standing right behind me with a big smile on his face.
So we thank the Lord for the immense hope that these amazing dreams and vision have brought us. We are so excited to see what’s in store for Zion’s future. We feel confident that he can live to be a year old and beyond. Please hope and pray with us!
- The discharge date has brought so much hope. It’s been 9 months in the making! It feels amazing to finally be in the home stretch.
- The first week of our daughter’s (Pre-K) homeschool went so well. The kids and I had a blast. And it felt so wonderful to finally dive in and DO what I’ve been preparing for over the past couple of years. It brings me so much joy to see how much my daughter has been wanting and needing this. And even my 2-year old has shown a hunger to learn as he quickly memorized our memory verse for the week (Psalm 119:11) and has been repeating it all day long! Talk about music to a Jesus-loving mom’s ears! I thought I’d share a little photo of progress on my part. This is our little arts and crafts station for my daughter. Up until the other day it’s been a disorganized mess. But thanks be to God He helped me to finally organize it. Over half the items pictured were blessings from other people, and the shelving unit was truly the best Goodwill find ever! It’s been amazing to see God provide for our needs, and it feels good to accomplish this goal at home. And thank you to the sweet soul who blessed me with two books written to encourage a homeschooling mother. What a sweet surprise!
- We asked for prayer many months ago for our daughter’s eye condition (strabismus). I’m happy to report that it’s been doing much better. She has been diligent to keep her eye glasses on and we have seen a lot of improvement. Thank you for praying!
- This is crunch time. I have many goals for Zion and am asking the medical team for lots of things to be accomplished before Zion leaves the hospital. Please pray for soft hearts in the practitioners who are the decision makers. But most importantly pray for God’s will here – because I know that my goals and the Lord’s goals often differ. ☺️
- Our goal is to recruit at minimum one 8-hour home nursing shift every day of the week before we take Zion home. Once he’s home, we desire to continue the recruitment until we have our full 16-hours per day of home nursing hours staffed that insurance will cover. Please pray for this big endeavor because the home nursing shortage is widespread. The big goal is to have Zion home for his first birthday on March 18!
- Zion has an eye infection/conjunctivitis that started the day before yesterday. He’s got a lot of tearing, oozing and crust forming on his baby blues. Please pray for quick healing.
- With the recent change of Zion’s feeds from continuous to bolus, we have noticed that stooling has become even more painful and dramatic for him. He becomes very worked up and upset which causes both his oxygen level and heart rate to drop dangerously low. He’s needed a few baggings recently for this. We are trying to see if an additional medication might help him. Please pray for wisdom for the GI lumen team to choose the right drug for him. And pray for God to bring a resolution to this for Zion’s sake. It’s hard knowing your baby has to undergo these painful episodes multiple times a day.
- I have massive amounts of paperwork filing and organizing to do at home. I desire to accomplish this before Zion discharges. Please pray for God to give me motivation to get started. I’m the type of personality that once I get started, I gain lots of momentum and keep going until I’m finished. It’s the getting started part that I’ve been struggling with.
Behold, I am the LORD, the God of all flesh: is there any thing too hard for me?Jeremiah 32:27