The Daily Kaleb

A sweet church member came over on Tuesday October 8th to help us with the kids. This freed us up to rest and go spend time with Kaleb, just the two of us. We have been so very grateful and filled with love from all the encouragement, prayer, gifts, and time shared with us from our local church family here in Boston and christian brothers and sisters near and far.

Kaleb remains stable.

A Few Changes

His doctors decided to stop feeding him breastmilk for the time being, the combination of his medications, not knowing how much blood flow is getting to his stomach, he hasn’t had a bowel movement yet. They want to be safe at this time, his stomach has a high chance of developing an infection given this combination of factors.

They have been able to get his heart rate down to 120’s and his blood pressure up with the help adjusting medications. It’s been a constant balancing act of walking a tight rope but good progress has been made here.

What Hasn’t Changed

However, the right ventricle is still enlarged and the left is still weak and compressed by the right.

His lungs/breathing are still restricted.

Going Forward

The doctors and surgeons met last night (Tuesday) to discuss Kaleb’s case and decided they didn’t have enough information on his heart to proceed with surgery. So, they will definitely move forward with a heart catheter to measure more accurately the inside pressures of heart. This procedure will be either Friday or early next week, depending upon his stability. They will need to move him to the cath lab for this procedure so they want him in the best possible state before moving him around and doing an invasive procedure.

If they decide on surgery, the first surgical repair of his heart will be the two holes in his atrium wall.

They have now brought the pulmonary team into the discussion with his lungs and they have recommended a few different therapies that could be helpful. Although they also agreed that the heart catheter would be the best next step to help them put together a fuller picture.

How are we doing?

Today, Wednesday, October 9th, we took a day trip with Zion and River to Woodstock, Vermont to see some autumnal glory. It was hard, but also so good to get away from the intensity of this time to breathe in some autumn air, sit in the still quiet forests, taste some Vermont maple syrup, and watch the kids laugh and run around in the leaves.

As we get farther away from “survival/adrenaline mode” and more into “day-to-day mode,” the grief is settling in, slowly finding a place in our hearts. We’re learning new depths of how to be “sorrowful yet always rejoicing,” realizing we will  never return to the normal we knew before Kaleb entered our lives.
Yet, there is still so much to rejoice in:

⁃Consistent, timely, meaningful texts of encouragement and scripture from friends

⁃Daily kindnesses and gifts from the Lord, like babysitters, help around the home, and delicious home cooked meals provided through our church family

⁃Opportunities galore to interact with the unbelieving staff and families in the CICU and testify to the peace and hope we have in Christ

⁃Zion and River’s growing friendship and delight in the smallest things

⁃A Savior who is a merciful and faithful High Priest–acquainted with our grief,  has covered all our failures and sin with His blood, and lives to compassionately intercede for us now.

⁃An infinitely wise Father in heaven, whose understanding is as limitless as His goodness.

⁃A powerful Holy Spirit who continues to warm our hearts to the Lord, protect our faith from the flaming darts of Satan, and remind us often of the precious unity we have with Christ’s people.

Prayer

1. Kaleb’s stomach would show more signs it getting adequate blood flow.

2. Praise God for his continued stability, pray he would continue to strengthen in his stability so that he can get the heart catheter sooner rather than later.

3. Continue praying for his right ventricle to reduce and his left to increase.

4. Continue praying for his lungs to open up.

5. Pray for the person and work of Jesus to be treasured through the work of His Spirit in us and through Brittany’s music being played on repeat in Kaleb’s room.

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