Asher is a growing boy! He's up to 5lbs and 4oz! We are so thankful he finally started to put on some weight after the week of not eating when we first got back to Children's...that was tough week. So, yesterday we spoke with the GI doctor who will be on Asher's case and he believes that dilating his esophagus is the best option for now. The only other option would be doing a surgery to cut out the stricture (narrow part) of his esophagus and then sew the esophagus back together. That is a much more invasive option with it's own set of risks. Dialating is where they would insert a balloon down the esophagus and slowly inflate it in order to stretch that part back out. This procedure also comes with risks, but it is less invasive and probably better long term. They have no idea how long he will need to be dilated. It will be a once a week thing for however many weeks he needs it. The dr said it could take 5 times, or 20 times. He just has no way of predicting that. Some kids have to come back several times in their life to be dilated again, others are good after being stretched as a baby. They still do not understand why Asher has this. It's pretty remarkable to be at a Children's hospital...the people who see everything..and they tell us they only see about 2 babies a year with a stricture without there being an obvious cause. Most babies that have this are born with an esophagus that is not connected, doctors do surgery and connect it, and then scar tissue can develop and block the esophagus.
So, we are set to have his first dilation (stretching) done on June 11th. By then, he should be 6 or 6 1/2 lbs. And we will see how it goes from there.
Asher also needs a hernia surgery before he leaves the NICU. We are trying to coordinate this being done at the same time as one of his dilations. That way he doesn't have to go under anesthesia an additional time.
Please pray Asher continues to grow, and that when they start these procedures, God protects the delicate tissue in his esophagus. There is a risk of tearing that tissue during dilation, which would then be an emergency to repair. We are praying that God heals his esophagus either miraculously or with medical intervention. Please pray his esophagus stays open and the less times we have to do it the better! He will have to be ventilated and given anesthesia each time. That's hard on an adult, let alone a 6 lb baby who has just recently been able to breathe without any support! Please also pray for endurance for Bryan and I. NICU life can be exhausting!
Thank you so much for your continued support and love for Asher. It's been a long road for him... and he's come SO far in 4 months. All 3 of us have felt so loved during this journey, and it's been an amazing blessing. He's our little hero. He is so good and patient with all the pokes and prods and things that have to be checked on him all the time. He is such a sweet boy, and has the love of many nurses already now on our 2nd stay at Children's. We joke that we have the NICU extended stay pass. It's an elite few that get that-- we are going to do the best we can to continue to glorify God in this journey.
Tonight at church we sang "With Everything" and I was thinking while I was singing the words:
"..with everything, with EVERYTHING I will shout for your glory, with everything, with EVERYTHING, I will shout for your praise..."
And I couldn't help but think, with everything...with a baby boy who passed away, with a baby who can't breathe well, with a baby who can't eat..with enduring and choosing procedures with risks..with the loss of normalcy...with EVERYTHING I will praise You and glorify You. It was as though I needed that "pep" talk in that song. I needed to sing those words loudly and remind myself that I am called to - with everything that happens in life, to point to God in it all. Every hardship, every good thing, and everything that falls in the middle are not meant to end on us...ALL parts of our lives should shout His name. Not just the easy, the beautiful, and the joyous moments.
And then we sang "How He Loves Us" and this line stuck out to me...
"All of the sudden I am unaware of these afflictions eclipsed by glory..and I realize just how beautiful You are, and how great Your affections are for me.."
So, the afflictions we've faced have been and continue to be eclipsed by glory, or blocked out and covered by His glory. And that HAS made us see and feel the love of God in ways we had not fully felt before all of this! All the love we have received..all the love Asher has received.. it is all a TINY fraction of God's love for us. Hard to fathom. And we are so thankful that He continues to teach us, and we are praying for hearts that continue to embrace His methods of teaching- knowing those methods were divinely planned.