My honest answer? I am afraid it will be hard.
The past week has been a flurry of celebrations
and disappointments. In short, we found a spot on her heart that, after running
numerous tests, the doctors believe is a clot. Thankfully, we have ruled out
some very dangerous possibilities regarding the spot, and we are moving forward
in a positive direction. Also, they thought she might have caught a virus, so
Kate was moved to isolation for a few days. Thankfully, she is doing fine,
though we are grateful that our doctors are being so careful with our precious
girl. Lastly, Kate is going to get a g-tube, probably sometime next week. She
was moving forward slowly with her sucking coordination, but they did a swallow
study (she swallowed contrast and radiology watched to see if the liquid went
into her lungs or her tummy) and found that she was aspirating (some of the
liquid went into her lungs). So, bottle feeds are off for now. In the meantime,
we will practice non-nutritive sucking and do another swallow study when she is
a little older. But, as soon as she recovers from g-tube surgery, we can take
her home.
Home.
That word. That word eclipses everything.
Everything I didn’t want. Everything I prayed against.
In the midst of last week’s sandstorm, a former
student of mine sent me 1 Corinthians 16:13. It reads, “Be on your guard; stand
firm in the faith; be courageous; be strong.”
And while I screamed “NO” to the things I didn’t
like, my God gently reminded me of a lesson He taught me weeks ago: “Be strong
and courageous for I am with you.”
Here is the miracle: my heart has changed. I’m
starting to realize that this story isn’t about me. I am not the author; I am
not even the main character. From my pen flows the story of our Kate, but these
are not my words and I am not in control of the plot.
My sovereign God writes the story, and He imbibes
me with a strength that I do not have by myself. I thought I would break if
Kate had to get a g-tube; instead, my heart grew strong. I believe this is
the first of many things that Kate will simply do on her own time and in
her own way.
There is no doubt: the path we walk is much
steeper than it was 5 weeks ago. And I am certain that at various points ahead
we will have to dig in and scale the mountainside. But the view from where we
stand is not sad. It is indescribably lovely.
You see: we get to take our Kate home soon. It may
not be what we originally envisioned, but when is it ever what we originally
envision? As this short chapter of her story comes to a close, I look back upon
answered prayers: she is here, and she will come home.
Prayer requests:
-Pray that Kate's g-tube surgery would go well next week and that she would have a quick, easy recovery.
-Praise that Kate has made some great strides in regards to her mobility-- thanks to PT/OT, her knees are almost totally stretched out, and her ankles and hands have made great progress. We still have a long way to go, but we are seeing big improvements! Keep praying big prayers for Kate's future mobility.
-Keep praying big prayers for Kate's vocal cord paralysis. Pray that we would find just the right ENT for the future.
-Keep praying big prayers for Kate's ability to eat safely. Obviously, we have had a huge setback, but there is hope for the future.
-Pray for God to prepare Avery for Kate's coming home. Pray that she would understand how to be gentle with her baby sister and the amount of care that Kate will require.
-Pray for Lee and me as we finish up these last few weeks at the hospital. Pray for endurance and pray against discouragement.
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