Progress!

We have lots of great news to report on Kaleb's progress the last couple weeks.

Heart

Kaleb had an echo done this week (pictured above) as well as a four month follow-up with his cardiologist. Both were very encouraging. His cardiologist said Kaleb's tricuspid valve, which was labeled as "severe regurgitation" before surgery is looking good (high praise from our very conservative cardiologist). His mitral valve still has some minor leakage, but that's understandable given how much harder that side of his heart has to work (it pumps blood to the rest of his body). He said Kaleb appears on all fronts (in the heart department) to be recovering and growing well.

Breathing

Since moving Kaleb's feeding tube (still in his nose) further down into his small intestine, he has been spitting up a lot less, and when he does, it's only mucus and bile. Because of that, he hasn't been aspirating very much fluid and it appears that his lungs are improving (though we don't have anything official yet, when we take him off of oxygen he stays around 90-95% oxygenation). We're unclear yet what our GI doctor's plan is in light of this fact as far as the upcoming G-tube surgery goes, but it is very encouraging. We will meet with his GI doctors on Tuesday as well as get an x-ray done of his lungs to find out more concrete evidence on this front, but right now, it would appear that his breathing difficulty isn't due to something permanent like lung disease. And we're very thankful if that is the case!

Feeding

We met with the G-tube team on Monday to get a teaching on caring for Kaleb's G-tube once he gets it. The G-tube is a stomach ("Gastric") port that will be surgically placed in Kaleb's abdomen. Because it doesn't look like his ability to swallow will improve any time soon we decided to move forward with this to make his feedings more streamlined. He will most likely have his surgery within a few weeks (still waiting on a date). There's a possibility he will get a G-J tube placed instead which would be a bit more complicated to take care of and replace since it will have a tube going to the stomach and small intestine. We should find out which he'll be getting during our Tuesday appointment.

It's hard to believe it, but there’s a possibility we might be looking at our boy's face without any tubes by the end of next month!

God is Gracious.

In the last update I (Brittany) mentioned concern for what it would look like to change Kaleb's feeds to continuous (20 hours hooked up to a continuous feed) instead of his regular bolus feeds every 3 hours. I didn't expect this change to drastically affect my day-to-day experience in a positive way! All the time and mental energy I was devoting to calculating and preparing feeds and rinsing and prepping feed bags was gone in an instant. And his care now merely consists of maintaining his feed, administering three medication rounds at 7am, 2pm, and 8pm, breathing treatments, and normal baby things like changing diapers and tummy time. I have been blown away at God's kindness in this. It's happened a number of times, just when I start feeling like the pace we're going isn't sustainable, God lightens the load in some way. He is a good shepherd. I'm experiencing in a more vivid way the truths in Isaiah 40:11,

He will tend his flock like a shepherd;

he will gather the lambs in his arms;

he will carry them in his bosom,

and gently lead those that are with young.

What is Normal?

As things have settled down a bit, we're learning the new normal, a normal that can be upturned at any moment with a trip to the ER (for any one of our children, really. River is proving to be quite the adventure!), a normal that requires more attention, forethought, and faith. But it IS normal. It is not crisis-mode. It is not survival-mode. I am baking bread again, taking all the kids to the library, thinking about poetry, and cleaning the house (for the first time since we moved in). We are going on walks, taking deep breaths of sunshine and crisp air, having church family over for dinner, and taking the family to Costco. And we are so deeply grateful.

Thank you for keeping us in your prayers!

Upcoming Appointments:

• Tuesday, March 4 - Chest x-ray and GI follow-up

• Friday, March 7 - Early Intervention Therapy Session

Please Pray:

• For Kaleb’s breathing to continue to improve so he can be off oxygen permanently

• For wisdom for his doctors to know the best path forward in light of his tendency to aspiration.

• For the transition to yet another new form of care (g-tube) would go smoothly and we’d be able to learn his new regimen quickly and easliy.

• For patience and endurance as we train our two toddlers and wisdom as we seek to shepherd their hearts.

• For humility in our marriage; that we would be quick to see each other as our teammate and not our enemy; that we wouldn’t let lack of sleep or abundance of stress decrease our love for one another.

• For God to bring His Word and gospel to our hearts and minds during busy days.