Wow, where to begin….

Sebastien got on the nasal cannula this week. I’m excited because that means we’re one step closer to getting him ready for feeding by mouth. Also excited because he’s so stinking cute and we get to see his face all the time now. They’re working on weaning down his humidity, so it may be another week or so before we can move his feeding tube to be a gastric tube. They did remove the one in his mouth though and put in one via his nose today. He’s no longer blowing bubbles and needing constant suctioning. During kcare today, he didn’t have a single desat either. His PDA is still an outstanding issue and what to do about it. He’s too old, too big for the medication to work, yet he hasn’t shown any reason for the ligation surgery to be done. The current literature doesn’t really say what to do in situations like his. Usually their PDAs close by now, or they’re medically closed.

This week we’ve alternated between working on increasing Samuel’s feeds and weaning him from the vent. Scott sent me a text message this morning: “Sam’s off the vent!” I was beyond thrilled. We really didn’t expect it yet since his blood gasses have been mixed recently. But his doctor today (had him for the last two days, and now I love him) said that he didn’t think it was fair to him to wait till tomorrow when his regular doctor came back since he’s been doing fine. We realize that at any time he may have to go back on the vent — he will likely get tired — but I don’t care, this is huge progress. And as of now, he’s been on CPAP for well over 12 hours with no real issues. He has had several bradys today, something he never had on the vent, but he’s brought himself back each time. If he keeps experiencing those, they may take him off, but maybe not, we’ll see.

When I have time later, maybe this weekend, I want to pull up some of the old pictures of Sebastien when he was first on the vent. Years from now, the only way we’ll be able to know who is in the picture is by the date. They look exactly alike! Which of course they should since they’re identical twins and all.

Sebastien’s nasal cannual pictures and Sam’s CPAP pictures:

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8 thoughts on “Updates

  1. Yeah, Sam looks EXACTLY like Sebastien did two months ago. In fact I was going to ask if you could separate the pictures for Sam and Sebastien! Even though they’re two pounds apart in size I’m having trouble differentiating because I don’t know the names of the equipment I see in the pictures! LOL

  2. I just wanted to say how happy I am that Sam is off vent and on Cpap. And Sebastian looks so cute in his canula.
    I am also grateful for your blog because I just gave birth to my B/G twins at 27w6d on March 12th. There are times when I feel so lost!! And the ups and downs, wow! My little girl (she was 2 lbs 11 oz at birth) has a possible brain bleed (they will do a follow up u/s in 3 1/2 weeks)… then today they did u/s and found they both have PDAs.
    Again thank you for sharing your experiences!

    • Hi Leslie! Your babies are beautiful, and that hair! Sam also has a resolving grade 2 brain bleed. I’m actually not sure the current status of it….will find out today. They both have PDAs that are still open, and Sam has two other holes as well, an ASD and VSD.

      They say the NICU is like a roller coaster, but I hate that description. It’s accurate to a point, but you choose to get on a roller coaster, you have fun on a roller coaster. No one chooses the NICU. I was telling a friend today that I feel like I’m in a twisted sick sorority now. If there’s any advice you need, please let me know!

  3. Mom says:

    Oh how cute these pictures are. They brought happy tears to my eyes. May GOD bless my grandsons and touch and heal them.

  4. Rebecca from FF says:

    WOWOWOWOWOOW!!!! Wonderful, wonderful, wonderful!!! What little fighters you have! So very happy for you all!

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