Milo’s Story

Site created on May 17, 2020

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Newest Update

Journal entry by Holly nowak

Well it’s been quite some time since I’ve updated which is a good thing!
Milo had what we hope to be his last dilation procedure yesterday!!  The surgeon was able to use the scope to get all the way down to his stomach, which he hasn’t been able to do before stretching his esophagus!  He was able to stretch him to 10 millimeters, which is a normal size for someone his age!  The surgeon was very confident that that was his last dilation!!!🙌🏻👏🏻🥳.  
We were so happy to hear that!  I told Chris on our way to the hospital that I have a love/hate relationship with the hospital. Masonic has done so much for him and has been absolutely wonderful but I hate going there!  So I’m glad that our visits there will be very limited (we still see pulmonology, cardiology, and ENT).  
The procedure was quick, like always, and we were home at about 11:30am!  Milo was tired, groggy, and a little cranky yesterday but still managed to give us lots and lots of smiles!  He is back to his normal happy, smiling self today!
And can you all believe he is 6.5 months old?!?  I seriously don’t know where the time has went.  He weighs a whopping 12lbs 11oz and is about 24 inches long!  He’s getting stronger and bigger everyday!  He started daycare in October and that has been going very well.  His provider told me the other day that his smile just melts her heart!  And I agree!!  Every morning when he wakes up, he gives us the biggest smile or if you look at him and say his name he smiles😁!!  He has yet to wake up and not give us one!  He is the happiest baby except when he’s hungry or tired!  
He still very much adores his sister, and she absolutely adores him too. The best part of Avery’s day is getting to say good morning to him. She sits and watches the monitor for him to wake up. Talk about making my mommy heart happy!! 
He also has been rocking the bottle!!  The only time we use his g-tube is in the early morning (4am ish). He needs the calories and why wake him(he sleeps thru the night)to give him a bottle?  We are glad he’s been doing so well with his bottle feeds!  He will likely keep the g-tube for about another year. They want him to go thru the different seasons, get sick a couple times, and start solids before they would remove it.  We are ok with. We would rather have that than have them remove it and then need to put it back in.  We will likely start solids in a couple weeks!  I hope for no hiccups or issues once we start that! 🤞🏻
Milo is also one of the lucky kids who gets to wear a helmet!  He was scanned and measured 2 weeks ago and will be getting his new hat tomorrow!  We’ve decided to decorate it with Vikings stickers (even though they aren’t doing too good this year)!  He will need to be in the helmet for 3-4 months to fix the flat he’s got on the left side of his head (he spent a lot of time laying on that side when he was in the NICU).  So we will have a little Vikings player on our hands!! 🥰
We are looking forward to celebrating his first Thanksgiving and Christmas with him!  Even though this year will be unlike all others. At least he will have good stories to tell in the future about the year he was born. 
I want to wish everyone a Happy Thanksgiving and a very Merry Christmas!  I wish for health and happiness for everyone!





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