One giant leap for Benjamin kind

First things first – happy 8 weeks to the little man! For this important day he decided “Enough with this breathing tube up my nose and into my lungs! What’s this bubble CPAP everyone talks about? I want to get me some of that.”

Benjamin had such a great weekend that they were able to ween him on the ventilator and by today was at minimum settings. And today the doctors were able to extubate him and put him on the bubble CPAP. So now instead of a ventilator forcing him to breathe, he is doing all his own breathing, but with a little help. The CPAP pushes a constant pressure of air (with some extra oxygen for now) to keep his lungs from collapsing and the bubbles oscillate the air a little to help with the exchange of gases. Or that’s sort of what I understand… It could also be magic.

While the CPAP is much better for him – less risk of all the issues that come with being intubated, like pneumonia and lung damage – it does look a little silly. He now has just two little prongs going into his nose, but they are on a horizontal tube that velcros to his face and then the tubes on either side of his face clip on to his little CPAP cap. He also has some stuff they stick to his nose to help protect it from all the gear. But all together it makes him look a little like a spaceman.

He has done well so far on the new set up – his oxygen saturation is great and he is only on 26% oxygen. His blood gases taken after he made the switch were also good. He is a rockstar.

In other good news Benjamin is also able to cry now that his breathing tube is out. We have not yet heard him, but the nurses said he would have a sore throat for a while since he’s has that tube in for 8 weeks. One day I am sure we’ll be sorry we said it, but we can’t wait to hear him.

I think what finally made him take the leap was both Henry and Dilan visiting this weekend (though they could not come in the NICU). The thought of them having so much fun out in the world lit a fire under his isolette.

Cannot tell you how excited we are… this is progress! And the method they use here for the bubble CPAP is one of the reasons we wanted to get Benjamin to Columbia in the first place. It’s incredible how many nurses have come over so happy to see him off the ventilator and to congratulate him. They say he is now officially one of them.

I need to remind myself that there are likely still rough days ahead, but for now we’re going to enjoy and celebrate.

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19 thoughts on “One giant leap for Benjamin kind

  1. And we are celebrating with you. We are so happy to hear the good news. It’s one giant step for Benjamin. Congrats sweet Ben! We are looking forward to when your wonderful parents can take you home for good.

  2. Joe – (and Amy – nice to meet you),
    I’ve been reading every update with baited breath and am so impressed by his and your strength. This has been an amazing human experience to watch unfold and I’m truly honored to be a witness. You are both great writers and communicate so clearly what your family is experiencing. Sending love to all of you.
    Jaime

  3. So wonderful to get good news from Benjamin! Yaaaaaaaaay! Way to breathe, little guy!

  4. This is awesome! Tom and I are following your posts and were happy to see this progress. Congrats to you guys and way to go spaceman. Keep it up!

  5. Amazing!! This post made me cry! I’m so warmed to hear that Benjamin is making such progress. Of course, you three are always in my thoughts (and a topic of conversation in my classroom – everyone is rooting for you!!) My heart is with you always!! Keep up the great work, Benjamin!! And Joe & Amy – you two are rockstars too!! Keep being the awesome parents you are!! He is lucky to have you!! nicole

  6. yea yea yea yea yea yea yea. i have nothing more coherent to add. yea yea yea yea yea. must go bake or something to celebrate. do you like pie? yea yea yea yea yea yea yea.

  7. That is wonderful news. Celebrate this amazing step. Benjamin it was very nice to meet you yesterday. You are a very determined little baby and have a lot of spirit and fight in you. You are adorable. There is not to much else I can say except go Ben!! Love you all GACA

  8. Wonderful news. Carol called to tell us. She is so excited almost as much as the two of you. Can’t wait to see you all again. Prayers are being answered.

  9. Amazing…I’m reminded of a quote from a book that resonated with me when Lily had her heart surgeries. “Everyone keeps telling me how strong I am…I just wish I didn’t have to be.” I know that it can feel that way sometimes- but know that you all are incredibly strong and WILL get through this!

  10. This is definitely the way to celebrate your 8 week b-day Benjamin!! What a wonderful gift for everyone especially your amazing parents. I can’t wait to hear your little cry. It will be music to our ears. Most of all, I can’t wait until your mommy and daddy get to hold and cuddle you. You are so loved. Congratulations sweet baby. You are truly a miracle.

  11. Thats amazing!!!! Im soooo excited for you all! and fyi, you know my mom uses a cpap… and she looks just as silly! Dont tell my mom and I wont tell Ben!

  12. Yaaaaayyyyy!!!! That’s WONDERFUL news!! Melin & I also follow all your updates with eager anticipation of the news of Benjamin’s progress. Your love for him & each other, as well as your sense of humor is palpable, as is the love & support of your friends & family. You are truly blessed! We will keep the positive thoughts & prayers coming your way!! Love to you all! =)

  13. Great news! Happy 8 weeks little man! (Now that you have a little man, Joe, can we stop calling you little man? Har har har…)

  14. We will all celebrate! That is fabulous news!

  15. He looks like a future astronaut to me!!! Congratulations Benjamin! We love you!

  16. That is so awesome Joe & Amy. He truly is a remarkable little boy! And loved by so many friends and relatives!

  17. I’m so happy to hear this great news and join all the others in tears and celebration, Happy Birthday Ben and continue on the homeward path. Love and prayers always.

  18. Halfway there little man. Go Benjamin, Go!!!
    So incredibly happy to hear the GREAT news. A toast from across the country to mom and dad. Hoping you two can breathe just a little easier as is Benjamin.

  19. Yay for little tiny baby cries!!! (didn’t think I’d say that ever, ha).

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