Welcome to our roller coaster. If this post is messy, it’s because I am still processing our news, while also parenting, and all the things. I am a mess but I have such peace. My husband is an absolute rock of a man and never waivers. We have an ARMY praying for us. And God is so present, always. I made a blog update last night at 11pm, but forgot to post it. Since then, everything has changed. Below is the original update, and below I will update with the latest since this afternoon. I think this is a good glimpse into how quickly we are always ready for things to change around here:
Update as of August 3rd:
Our biggest news this week is that we have a date set for our MRI and Cath: September 22nd! This was the soonest we could get this scheduled, and I’m relieved with the fact that it gives us a minute to figure things out. The team at TCH worked hard to make this happen. To minimize her procedures, we got the MRI and Cath teams on the same schedule — Sunley will be put under and intubated for the MRI next door to her Cath room. Once the MRI is done, they will open the suite doors and roll her into the cath room where Dr Qureshi (a favorite of ours!) and the team will perform her cath. I have some more questions for her doctors about the cath, but my understanding is that they will be checking her pressures to make sure she is a good candidate for the Fontan procedure, which we fully expect. Dr. Qureshi might also coil off some collateral vessels if Sunley’s heart has developed more of them. I’m actually not sure why we are doing an MRI, so I will ask her cardiologist when we speak next — I’m assuming it’s just so Dr. Heinle and the surgery team can get an extra-accurate picture of her heart before they get in there. I had to set up a dental exam for Sunley here, get a clearance form, and had to get her a prescription for one dose of amoxycillin to take before the dental exam. All of this scheduling was a series of phone calls, leaving messages, etc. I was very thankful that day for helpful and polite scheduling teams!
I have been slowly trying to take on a few more day-to-day tasks that have “fallen by the wayside” over the past month-plus. We’ve started a light homeschooling load and will ease back into that routine, and I’m trying to take on a bit more housework. It’s funny how these things become so burdensome when such a big life change is thrown at me. I’m sure some people can probably keep up with these things better than I can, but I’m giving myself a lot of grace in these areas for now (and being SHOWN a lot of grace by anyone that stops by for a visit!). Everyone has advised me not to worry about these things for now, and I will gladly accept that advice! It truly has allowed me to slow down and focus on only the highest priorities right now. The other night, after planning to cook dinner, I just didn’t have the grit to do so, and I went by the drive-through at Panera. It’s a little pricey for our family of five eaters, but I did it anyway. Of course, when I got to the window, I was informed that the driver in front of me paid for my order because “God is good and He always provides.” Shocker. Thanks for the wink, Lord.
He always provides. Yesterday, I was feeling a bit overwhelmed with all the tasks that absolutely must be done before we leave next month for Houston. I was considering quitting yet another thing I had volunteered to do for the new school that my big two are starting in a couple of weeks. As I was thinking about it, I got a text message from a new friend that read, “Hey, don’t you have some responsibilities coming up with Cimarron? Would it be helpful if I took those over for you?” Pre-heart mom Liz would have said “Thanks, but I can do it!” But God has taught me (SHOVED me into learning) to accept help. What a friend He has sent me. And we have had so many helpful offers and words of encouragement just like her’s. Seriously, the sweet favors and encouraging texts, cards, and phone calls are too many to list. You know who you are, God knows who you are, and we thank you. He always provides.
Last week, another dear friend, Anna Brown, who is on her own journey of mothering rare, sent me a message on Marco Polo specifically to encourage me with this verse from 2 Corinthians 4:
But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard-pressed on every side, YET NOT CRUSHED; We are perplexed, BUT NOT IN DESPAIR; Persecuted, BUT NOT FORSAKEN; Struck down, BUT NOT DESTROYED — always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body.
For we who live are always delivered to death for Jesus’ sake, that the life of Jesus also may be manifested in our mortal flesh. So then death is working in us, but life in you. …
[We] know that He who raised up the Lord Jesus will also raise us up with Jesus, and will present us with you. For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God.
THEREFORE WE DO NOT LOSE HEART.
Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of GLORY.
What purpose our suffering, any level of suffering, can have if we just empty ourselves and let God move. Deep sorrow. Deeper joy.
*****************************
OK, now for the update as of this afternoon:
This morning, I left messages for Dr. Heinle’s surgery coordinators, as well as our cardiologist, Dr. Ayres. Ayres called me this afternoon, and explained a few things:
First of all, the MRI was ordered by the cath team, not cardiology, in order to reduce Sunley’s lifetime exposure to radiation, since we know that she will always have medical things like this in her life. That’s a good thing of course, that TCH is thinking about the big picture for our kiddos and reducing those exposures where they can — but in this case, getting MRI and Cath on the same schedule is the reason it was put off until late September. Sunley’s cardio team doesn’t feel that it would be wise to wait that long for intervention, so we are canceling the MRI and moving the cath date way up. I am waiting on a call back from the Cath team to reschedule this. It could be very soon, so we are very much in limbo. (And I am regretting having dental work and a temporary crown done yesterday, because I’m not sure how I will fit in getting a permanent crown put on, and this temporary one was kind of a disaster and my dentist expects it to fall off and…I digress!) All of the “I guess it’s good we get to wait until September” and all of the bucket list planning, post Fontan vacation planning, Davis’s birthday party…all planning is just gone.
Now for the second part of the update. Sunley’s surgeon suspects that she has some damage caused by the sickness she had back in June when all of this started. He also noted that it’s possible that by doing the cath (in which they might be coiling some collateral vessels) and by giving things a bit more time to heal, Sunley’s numbers may come back up well enough for us to wait for the Fontan until next year.
What a roller coaster. I thought I was going with the flow, but now I’m purely liquid. I have absolutely no control and no illusion of control. I have no idea what to pray for. Of course, we want to wait if we can! What an incredible answered prayer that would be! But seeing how much a minor virus knocked our girl down makes us very nervous for this flu season — not to mention the incredibly high number of RSV cases happening, and of course, as always, COVID. We also can not rent an apartment until we know if we are doing surgery, and can’t really make plans for school, for our homebuild, for our kids, Et-freaking-cetera.
Regardless of what happens, God is moving our story along in ways I did not expect. I have a battle song always playing in my soul, and this news that the Fontan may get put off again certainly feels like God is saying MOVE, MOUNTAIN. Pray with me, please.
