It’s been a busy few days. So I haven’t yet told you that I really like the Neonatalogist that began a 3 week rotation this week. He explains things well, is easy to talk to, and seems to have a good mix of “by the books” and “let them be babies” in his philosophies. L was crying and ready to eat (early) during the rounds on Monday morning. That was his first time seeing L. During his brief exam, he said sometimes the babies just know what they want. And we should listen.
He then mentioned that as well as he was eating, we should try him without a tube soon. WITHOUT A TUBE.
I’ve been so fixated on getting them to drink enough by bottle to get approved to go home, that I kind of forgot going without a tube would be the preferred outcome.
After another stellar day yesterday, he made the decision during this (Tuesday) morning’s rounds. L would “sink or swim”. That’s when they remove the tube entirely, and give him 24 hours to drink entirely by mouth. If he refuses a bottle, or won’t finish a bottle…there’s no tubing the leftovers. If he wants a little more…that’s ok too. In other words, L sort of gets to be in charge, but bottle is his only option. If he does ok, he gets a couple more days to continue. If he sustains or gains weight as he should…the tube doesn’t have to go back in!!!
So far…he finished his 12 pm, 3 pm, 6 pm and 9 pm bottles with no issue. His “prescribed” volume had been 65 ml. He’s actually taken 70 ml for two of those bottles.
Our little buddy is swimming.
We’ll see if he continues this overnight. I have high hopes. I also have a front row seat. I’ll be pulling an all nighter at the NICU tonight. (Known as “being a mom” to those of you in the normal world.)
Mama Laughs 
This is such wonderful progress. I like that neonatologist too. I shared your update with my 17 year old son. His twin brother has Dandy-Walker Malformation. I know your boys diagnosis has changed but still feel a strong mother if twins connection 🙂 Luke’s comment was “those are very strong babies!”. Embrace and absorb those “strong days”!
Your babies are a true Miriical and thank your for letting us witness it with your blog. Witnessing your faith is a true inspiration.
Tina
As Dory would say just keep swimming, just keep swimming, just keep swimming! We will continue to pray for your family and that L and N come home soon.
You don’t have to be able to read in order to swim…I believe L will swim! Thanking God for all HE is displaying through L and N…and through you and Justin! Love to all the family…prayers abound!
Hello! My name is Tina Lane and I live across the street from Nat and Andy. Nat shared your journey with me this summer and I’ve recently started reading your blog. I have been so touched by your experience. Your little boys are true inspirations, as are you! Just for the record, my Aunt in Hawaii has started praying for your family so there’s another state to add to your map 🙂
As many have said lately…you don’t know me but I am a neighbor to Gary and Kaye and went to school with Justin and I have been following your story. I just want to share how inspired I am by your courage and faith. I have said many prayers for you guys and will continue. Much love to you and your little ones
Keep swimming L. There are a lot of people cheering for you and N.