Unfortunately when it comes to little Levi, there are many different people taking care of him, and there are many different opinions regarding his current and future condition. For some reason, since the day Levi was born though, I have not searched the internet for a single thing regarding his care or condition. I believe God has protected me from additional opinions and information that I do not need to consume. There are enough people speaking medical jargon and personal experiences into my ears that I really don't need to add to the equation. We are once again in a holding pattern, but this time, I'm grateful for the standstill.
The neurologist stated that there was nothing out of the ordinary in Levi's MRI; however, he believes that there is something "going on" with him. He has begun the "non-invasive" route of blood and urine tests to check for common nervous system and muscular disorders. I've heard from a couple different people that Levi may be gaining weight (up to 6 pounds now!), but his muscle tone is very low. My first thought was, "I've never seen a ripped baby! What muscles are you looking for?" But the muscles they'd like to see get stronger involve his swallowing and other upper body movements. However, there are others who have worked with Levi who disagree slightly with this analysis as he lifts and repositions his own head consistently and appears to be swallowing his own saliva at different points.
The doctor said we have to wait two weeks for the blood test, and if it comes back clear, then they will begin more invasive surgeries like a muscle biopsy. They don't want to tell me any specific disorders until they can actually diagnose him, but I'm told many of the muscular disorders seen in infants have no cure or correction. I was also told that there is a good chance Levi will go home on a more permanent feeding tube and maybe even a little oxygen. If tests continue to come back normal (as they have so far), then it's my impression they will continue with further testing. :(
My heart is breaking as I imagine Levi undergoing more tests, probes, and surgeries. I admit my thoughts have begun to unravel again.... at what point do we get second opinions? third? At what point do we stop testing? At what point do we take home a baby who may or may not thrive in this life?
For this reason I praise God all the more for creating my husband because I have a leader for our family to make the final decisions. I pray for him daily, and trust that God will speak through Matthew if I give him the opportunity to lead.
I've been in a similar place before where I didn't know what road to take for a very significant life decision, and there was no shortage of opinions on the path I should take. Although at that point, I wasn't married to Matthew. I struggled and struggled to hear God's voice among the noise of other voices, but I learned so very much. 1 John 5:14-15 : "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him." In other words, if we want God's will, then it will be done. No worries or stress. It's already done. Takes the pressure off of decision-making. Pray, act, and you will know.
Thank you for praying for our family as we try to hear God's comforting words above all else.
~Levi has two weeks to grow strong before the blood test results and possible future testing
~Levi is 6 pounds and quickly outgrowing preemie clothes- His actual due date was May 30!
~Levi has had a couple of good days with hardly any "episodes"
~We are the parents of two precious lives
~Levi went up to a 6 on the high flow because he was having too many episodes a few days ago
~That they would let Levi rest a bit and not push him too hard to get off oxygen too soon
~Levi is back on secretion medicine, prayers this will help not hurt him this time
~How to make medical decisions when presented with the opportunities
~Praying for a miracle that Levi won't need further tests and will simply heal and grow strong without any more issues
~Rest for our family. With Silas cutting more molars and wanting to sleep in our bed, and me still pumping my dairy-free milk around the clock, we are sleepy.
We are truly humbled by your love!