Heaven in a hospital bed

Tuesday, August 6th was the last time I’ve seen Zion awake

The past few days Zion has continued to have episodes where his oxygen sats will fall low, and stay low for some time before coming back up. Normally the team would use a bolus dose of morphine or Versed to calm him, which in turn help his sats go back up (since he previously had been maxed out on oxygen on the vent). However, our precious baby has now developed tolerance to these two medications since being in Omaha, so they no longer have the same effect. Therefore, they were forced to use their last resort option again, starting him on the paralytic drip. When vitals become so unstable for a baby, keeping them very still and calm truly is a life-saving measure. I’m so grateful to have gotten a couple days to see Zion awake and moving again. To get to feel his little kisses. Or to enjoy how he caresses my arm with his little toes.

So, earlier this week I was faced with another hard and tearful day as I watched the paralytic take its effect. I was hoping that it might be easier the second time around, but it wasn’t. You could see him still trying to fight to move to grab my finger as it was taking him deeper and deeper into paralysis. And I even saw tears flowing from both of his eyes. Oh, that was so hard. So very hard. Because I was unsure when he would be awake again.

After the paralytic had taken effect

But there was a light of encouragement around the corner. That physician who I mentioned in a previous blog post, the one who was sort of “unfriendly” to Trisomy, came to see me. He was definitely softer in his demeanor. He acknowledged that we were basically stuck with Zion and things were going nowhere. And to my surprise, he encouraged me to reach out to Dr. Hammel and his team to see if we could change the baseline they were looking for in Zion in order to move things forward and get him to the cath lab. I was so surprised he, of all people, suggested this! It’s as if he was on our side now! So I of course did. And because of this doctor’s suggestion, that email I proceeded to send seemed to finally make some progress. (God can make your enemies to be at peace with you.)

The day before yesterday the Omaha team decided to schedule Zion to go to the cath lab this upcoming Monday afternoon. After almost 2 weeks of waiting that felt like it would never end, we finally had a heart cath date! I was also comforted to know that they also said that if Zion was showing them that it needed to be even sooner, than they would squeeze him in earlier if need be. Based on that knowledge, I sent a little email that evening to Dr. Hammel’s nurse assistant to have her inform him about what a good 24 hours Zion has had as far as making progress on coming down on his vent settings. And that if they had an opening tomorrow, they might consider cathing him then, since so much could happen from now until Monday.

Well, that happened this morning! As I arrived just before 9am like I normally do, there were multiple people in the room = something’s up. To my pleasant surprise the nurse asked if cardiology had called me (they hadn’t). Since Zion had made such great progress the past 24 hrs (they had gotten his oxygen on the vent down into the 40s!), the team decided to go ahead and cath him today! This was answered prayer. We should have our answer as to the possibility of a heart repair in just a few hours now. Also, if all goes well with the cath, the ENT team will also try again to put in the bigger trach size today, after the failed attempt at the bedside the other week.

This cath is very risky for Zion because of what happened last time he went to the cath lab. Recall he went into cardiac arrest and had to endure chest compressions for over 5 minutes. The good news is that today they won’t be trying to place a device to close his heart defect, which is what caused his cardiac arrest last time. But the bad news is that Zion is even sicker now than he was the other month in the cath lab. So even the tiny cath wire could trigger a heart block again today. So this is a very high risk procedure for him, but we know that God is in control. And up until they call me to tell them the cath is over, I still am praying big prayers that God would miraculously lower Zion’s pulmonary artery pressures and confound the doctors. I believe that God can still do this today, if you will believe.

Today was truly bittersweet. Bitter because I haven’t seen Zion awake in a couple days. I would have done anything to see him awake and looking at me, even if just for a minute, before they took him away to this risky procedure. I can’t bear the thought of never seeing him awake again. I have to push those fears out of my head. It’s also hard because my husband is currently back at the Rainbow House watching the kids, when ideally he would be here with me in case something went wrong. But today is also truly sweet, because as Zion was being wheeled to the cath lab by his entourage, I ran into one of the Trisomy moms who was literally just praying for Zion before we walked by her! But this day is even sweeter because our son is finally being given his chance at determining if he can safely have a heart repair. This truly is the moment we have been waiting for. This is why we came to Omaha. Everything hinges on this decision today…

Zion is our Tiny Superhero

I know that everyone knows how to pray. So I will close with praises in the recent week.

PRAISES:

– The Omaha NICU has a wonderful program called Healing Hands. A massage therapist will visit the parents and give free chair massages a few days a week, right at your child’s bedside! This has been an incredible unexpected blessing. And I must praise Omaha Children’s for such a nice program!

– George noticed the other day that our room number at the Rainbow House was Zion’s birthday! We took it as yet another sign that God was with us, and we were where we needed to be.

– The other night, when they restarted Zion on the paralytic, I was crying watching him become motionless, again. We are a very affectionate family. We touch and hug a lot and give lots of kisses. It’s been hard for me to reach him in his taller hospital bed, and I haven’t been able to hold him since his vitals have been so unstable. So that has been hard to not be as close to him recently. I had thoughts in my head the other night about lying next to Zion right there in his bed and just cradling him into my bosom. The bed was huge, and I fantasized about how I could easily fit up there at that moment. But I didn’t dare ask because I assumed they would never allow something so ludicrous. The next morning, as I came in to see Zion, the nurse practitioner was in the room and asked me right off the bat if I would like to get into bed with him. I thought she was joking at first, but she told me she was serious!!! My loving Lord had given me this desire that I wanted so much! I felt so cared for and remembered by God. I soaked in every precious moment – it felt like Heaven, right there in a hospital bed. And I’m also so appreciative to Omaha Children’s for allowing me to do something that I’m sure is not encouraged.

This was a very special gift to give to a hurting mother and child

– I’m thankful for the amazingly sunny room that Zion has had since arriving in Omaha. The window in his Cincinnati room was taped up due to construction, so I have appreciated this new, bright perspective very much. You can be sun-deprived as a NICU parent, so this room has been a lovely blessing

Zion’s sunny bedroom window

– I’m thankful for how adorable my husband is because of how he enjoys color coordinating with his 2-year old son. And how he points it out when I fail to notice… ☺️

Like father, like son 😁

– Lastly, it’s been an amazing experience staying at the Rainbow House. There are SO many ways God is showing Himself here:

You see it by the way the donated meals always seem to be enough to feed the entire dining room full of families, and interestingly there also always seem to be leftovers (Jesus multiplies food to this very day).

It’s been touching to watch my other two children growing up before my eyes out here as they start to learn how to make friends and engage with the other kids staying there.

Speaking of the friends they’re making, Biblically-named children abound out here! Omaha has been filled with names like: Ezra, Faith, Jeremiah, Selah, Tobias, Sarah, Samuel, Isabelle Grace, Annelise Faith, and of course Eden, Judah and Zion! Wow!

Meeting a single mom also from Kentucky who has been out here, without help, for six months with her three young children, not including her Trisomy baby in the NICU, handling it all with such grace, has been incredibly humbling to watch as the Lord cares for “the fatherless” according to His promises.

Seeing the specific families who consistently reach for the free food from the “community” section of the Rainbow House kitchen has inspired so many ways to serve a group of people that had never crossed my mind before.

I will end with some sweet Omaha NICU nurse notes!

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