Day by Day

Louisville

Taking a trip home (to Louisville) after a big move is always a perspective shifting adventure. It was comforting spending so much time with family (complete with a big snow!) and so sweet to introduce Kaleb to our Louisville church family who have prayed so faithfully for him and loved us so well. 

Todd did amazing running the Great Commission Council booth at the CROSS conference. 15,000 students and leaders were in attendance and it seems like GCC had a strong presence there with a lot of interest. (I wrote a long post about how deeply proud I am for Todd on Instagram and Facebook if you missed it)

Home Life with Kaleb

Having had Kaleb home with us for almost a month now (which is very difficult to believe, as it feels like it's been a week), sitting in the ER for the second time this week as we continue to navigate Kaleb’s first sickness, the realities of exhaustion and difficulty are pressing in. 

Almost everything is more difficult with Kaleb. Getting out of the house we have to think through oxygen and feeds in addition to the normal changes of clothes and diapers. Right now, the cold he has is aggravated by his NG tube and natural difficulty swallowing, which has led to a lot of mucus, coughing, and spit-ups around the clock. Sleeping is regularly interrupted by making sure he hasn't spit up, or setting up/monitoring his feeds. Meanwhile, Zion and River are at a very active stage of life and are wanting to play, eat, or get into things from early morning until bedtime (they are a whirlwind of delight for us, most of the time :). But I need to hold Kaleb because it seems to ease his coughing and spit up. But holding Kaleb means bringing his portable oxygen and his feed everywhere with me, with risk of tangling his wires. And then we add in all of the doctor's appointments (1-3/week) as the doctors continue to try to make sense of his little body and how to best care for him. And now unexpected ER visits that take up most of the day (cardiology asked us to come in to monitor his hydration, breathing, and NG tube dislodgment).

We've summited the great Mt Everest of Kaleb's initial surgery and ICU stay, and we had the joy of scaling back down it as we brought him home that magical snowy evening, December 20. And now we lift our eyes to see a long, hard road ahead. The reality that we have a medically complex, high risk child to care for, one who continues to concern the doctors (specifically his breathing), with no resolution in sight, that reality feels heavy right now. The hurricane has died away and questions linger in the stillness. Are we going to be OK? Is he going to be OK? How long can we go on with so little sleep? What does tomorrow hold? Will we find more things wrong with his body?

The questions grow louder when I am weak and I have to sing truth to drown them out. I’m learning the power and importance of a good and grateful heart during these days. Todd and I are trying hard to remain cheerful and encouraging when it’s so tempting to sink into impatience and bitterness. And God continues to supply help just when we need it, through babysitters and meals or grace to endure when things fall through.

I know there is no peace outside of trusting in my God and His power and goodwill towards us. I know goodness and mercy are available in every difficult moment of every difficult day as I walk each day with my Savior. I know I can bring the deepest fears and the strongest discouragement to Him and find real hope and comfort in all that He has promised to be for us. And I know that the joy of the Lord is our strength. I know Jesus is with me and with Todd and with Zion and with River and with Kaleb. And I know we are safe in His arms. 

So, I take the next step, pump the next bottle, fill the next syringe, settle the next argument, make the next meal, clean the next dish, pray the next prayer, sing the next song, and continue to praise and trust the God of our tomorrows. Because I know one day we will look back on this time and marvel at how God sustained us and what He did in us and what He did through us. And I know all the glory will belong to Him. So, I want to trust Him. 

Upcoming Appointments/Prayer Requests:

• January 15 - ER (pray they figure out ways to alleviate Kaleb’s symptoms right now)

• January 16 - Early Intervention home visit (pray they’re able to identify ways to help him develop)

• January 21 - Pediatric Cardiac Nutrition (pray he’s able to keep down his feeds so he can grow)

• January 27 - Primary Care

• January 29 - Cardiologist follow-up (pray his heart strengthens so he can come off some of his meds)

  February 4 - Swallow Study (pray he learns how to swallow without aspirating)

We are so deeply grateful for each of you!

Serve the LORD with gladness!

Come into his presence with singing!

Know that the LORD, he is God!

It is he who made us, and we are his;

we are his people, and the sheep of his pasture.

Psalm 100:2–3