This update is long overdue, and thank you to the many of you who have reached out with the reminders that you’re continuing in prayer in the meantime. Here is the latest on Simeon and our family.

 

 

Simeon is stable, but he is making slower progress than predicted. 

 

Last week the doctors tried to lower Simeon’s respiratory support, and Simeon was not able to tolerate the change. He is now back on the higher level of CPAP. I asked the doctors to be candid about what this means for the timeline to discharge. They think that realistically we’re looking at way more time in the hospital than previously anyone really imagined … at least another 2 to 3 more months from now on CPAP, and then there’s the additional time needed for Simeon to figure out eating. 

 

This new timeline also brings to the fore the complication of how Simeon may eat as a bigger baby. Because Simeon has been on CPAP for so long (and will be for many more weeks) and prevented from learning to breastfeed or take a bottle, he may never be able to breastfeed or take a bottle. He may have missed the window for “baby modes” of eating, so to speak. If this ends up being the case, then after CPAP comes off, Simeon will have a G-tube surgically inserted into his stomach through which milk will be pumped into his tummy until he gets older and learns to chew and eat enough solids.

 

And it is also increasingly a possibility that we may never go home before Simeon’s big open heart surgery. Instead of the original hope that Simeon could come off CPAP and go home for several months before returning, now Simeon may need to remain in the NICU to get big enough until he reaches the size and maturity optimal for an open heart surgery.

 

 

 

A month ago Simeon moved out of the Heart Center and into the chronic, complex NICU at Texas Children’s. Simeon now lives in a pod – an open room with multiple babies each in their own compact crib. Let’s just say that #PodLife is a symphony of babies wailing out of tune and unrelenting beeps and discordant pings that alarm for vital signs. Sitting in that cacophony for hours a day is overstimulating to say the least. It is a workout to the senses just being there. 

 

 

 

We’re obviously very weary. 

 

Some days I cry as I hold Simeon and stare into his eyes and see him try to smile but be unable to because of the CPAP contorting his cheeks. Some days I burst into tears when I get into my car after a long day at the hospital drained by ongoing advocacy. Some days I cry as I’m rocking Calvin at home feeling the sobering reality that his twin remains in the hospital. And of course, some days I cry when the big kids are finally in bed just overwhelmed by the basics of keeping a house with an active 4 year old, 2 year old, and newborn, on top of Ben and I splitting the lion's share of our time in the hospital while Ben continues his work for the church.

 

So yes, there are days that we don’t know how we’re going to make it to the next day. 

 

And yet, our Heavenly Father is sustaining us. We’re moving forward little by little by God’s grace. Whenever I cry out in desperation again realizing I am at the end of my own resources, the Lord always seems to show up to give renewed strength the next morning (even with very few hours of sleep … we have one newborn at home!) or provide unlooked for timely help.

 

 

This bewildering wilderness has made us all the more sure of one thing. We are even more convinced that as we go through this, our sufferings are not a reason to turn away from God, but rather are surely why we must run with all haste into the arms of our Heavenly Father. Romans 8 reminds us that the whole of creation is groaning under the crushing weight of humanity’s brokenness. Creation itself – the mountains and its whistling trees, the sea and its teaming fish, the sky and its fluttering birds – all of this longs for the full restoration of all things when Jesus returns to reconcile and reunite to himself all things in heaven and on earth. On that Day, our bodies will be raised to newness of life, and these resurrected bodies will no longer be subject to lung diseases, congenital heart defects, and so on. And we are deeply comforted, as Romans 8 assures us, that our hope for this Day will not be disappointed because Christ himself has already done the hardest work of securing us to himself: exchanging our finitude, corruption, and mortality for his imperishable, flourishing, and immortal life. So we have no doubt whatsoever that nothing we go through now (or ever) shall separate us from Christ radically loving us always, even in this hard season: We are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord (Rom 8:37–39).

 

"I Asked the Lord that I might Grow" (1979)

In our current wilderness, our souls have been enlivened by and resoundingly ratify the profundity of the following hymn by John Newton.