The Walking In-Between

 7/1/22

Paths of Righteousness

Psalm 23 spoke to us differently yesterday. We took a whirlwind 24-hour trip back home to fit in 5 different appointments. One of the best moments was Keira's first dance class. She absolutely loved it (picture below). In our short time at home, we encountered a lot of emotions. Walking into Macklin's room, looking at his empty crib, seeing all the prep we had done, and not having him at home with us was hard.

Keira enjoyed her time back at home, playing with every toy in sight and her neighbor friends. There was a particular moment though where Psalm 23 hit us with a new capacity. The Psalm notes in verse two, "He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." The interesting part here is that the writer King David doesn't explicitly say how God led him to these places. For us, Keira and Macklin are leading us to green pastures, quiet waters, and restoring our soul.

Keira, being a two-year-old, has joy and wonder in her eyes. Whether it's a bug on the ground, a bus driving by, a spontaneous dance party, or a bird's nest, she stops for it all. We don't do that as adults because that stuff is old news and doesn't bring us joy anymore. Macklin, too, has stopped us in our tracks. We wait on him every day, oohing and ahhing when he opens his eyes, we get cuddles, or he makes a funny face. They have led us to the quiet places, and through them, even in the midst of the hard, God is working on our souls.

The next verse states, "He leads me on paths of righteousness, for his name's sake." That's exactly where we feel we are at now on Macklin's journey. We don't know where we are going or how it's going to turn out, but we know the route is led by the Lord. The footholds are firm, the journey is scary. And through it all, it's for his name's sake.

The In-Between

There hasn't been a lot of action for Macklin the past few days. Some of the good items are that he continues to be upped on his feeds. He loves his milk and his gut has taken it on really well which is an answer to prayer. He's now weighing about 9 lbs, 4 oz and outgrowing his NICU bed quickly. 

They took off the EEG (machine with 20+ wires to monitor his brain activity for possible seizures) after 24 hours. This was another answer to prayer! They are changing his neuro drugs because of this (which is good) and getting less concerned about seizures. This allowed us to hold him again too!

On the flip side there's a growing confusion and lack of movement on his pulmonary hypertension. They started him on a third drug to try and tame it but the ECHOs continue to show issues with the resistance in his lungs. This is definitely a difficult waiting game for us as there haven't been many answers.

Another looming issue is the extended length of time Mack has been intubated. This can cause vocal chord damage and a whole host of other things that aren't fun. They are working hard at getting him to a place of taking out the breathing tubes, but he just isn't there yet.

As we've had conversations with the different teams of doctors, it looks like some other interventions could be in Mack's future next week. He'll get an ECHO early in the week to see if any good change has occurred with his pulmonary hypertension. If not, he'll go down to the cath lab to have a procedure that allows them to get into the heart and measure the pressures more precisely. This will show us whether it is really pulmonary hypertension or if we need to go back and do another surgery on the Vein of Galen Malformation (VOGM). 

So that's the in-between. We feel like we're kind of in the middle of nowhere, no major improvements, no big answers, no movement in the right direction. But -- we'll continue our faithful walk on the paths of righteousness and we continue to ask you to join us in prayer and in faith that Mack will be healed.

Specific Prayer Requests:

  • For a miracle, that the next test results would reveal Macklin is supernaturally healed with no question that it was an act of God.
  • For answers to his pulmonary hypertension issues, that the teams of doctors could specifically pinpoint the issue and have a treatment to remedy it. That his case would not be severe, but mild and easy to counter and able for him to grow out of.
  • For Mack's continued growth and his gut to continue handling food. The bigger he grows, the more stable he will be for surgery if we need to intervene again.
  • For mom, dad and Keira to continue being strong through the waiting.
Ways to Support
1) Prayers as noted above!
3) Venmo (@corynikkel)



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