No longer our “Baby in a Box”

Besides the ROP crap in the last post, Benjamin has been doing great! First off – on Friday they moved him out of his isolette and into a crib! He has been off the heater for a few days and he was ready to be out in the world a bit. It makes such a huge difference to us. No more opening up the port holes to touch him, no more plastic separating us from him and it feels so much more normal. This whole experience is strange through and through, but seeing Ben in a crib, if you squint and forget about the IVs, the monitors and the CPAP, you can almost imagine him out of the NICU at home. After now over 100 days in the hospital, that would be wonderful.

It's a normal sized crib, he's just still pretty small

On the feeding front, Ben has been practicing a few times a week on a bottle and has beaten his previous record and took 20 ml the other day. That’s over half a feeding for him. It will be great to see him getting all of his milk through the bottle and none through a feeding tube.

Also good news – he is up to 4 pounds, 3 ounces!

And finally – they have been trialling him off of CPAP for 2 hours twice a day, and tonight they took him off at 8pm and when we called to check in on him at midnight, he was still off and the NP said the nurse can keep him off as long as he tolerates it. This is huge! We’ll find out tomorrow how long he lasted.

Today Amy and I even got out of the hospital for a bit and went to NJ for Jason and Heather’s wedding – congrats you guys! We had a great time!

All this progress is exhausting!


13 thoughts on “No longer our “Baby in a Box”

  1. The change in Ben is remarkable. I can’t believe that weight can make such a difference. Your a good looking little man Benjamin. I’m so proud of you. Love you so much.

  2. Such wonderful progress!!

  3. He is looking wonderful! Oh wow I know you both are so happy to see him doing all he needs to on his own! Way to go Ben! I knew it I just KNEW you was a fighter and seeing every post just proves it more and more! He is such a handsome little boy, congrats on his weight gain….he’ll be a chubby in no time!

  4. Way to grow Ben. Wonderful news about the CPAP as well. All good news. I will be keeping everything crossed for Ben as well, if you post date of procedure. So glad to hear more positives then negatives. Have a great weekend with the little fellow. Take care.

  5. Coming home is getting closer and closer!!! It’s been a tough long road for you guys but Chapter 1 of the Book of Benjamin will soon be over!

  6. Yes!! Tiny high five to Ben!!!

  7. Hooray for a crib! And feedings! And weight gain!! GOOOOO, Benjamin!! And, you two continue to be amazing as well. Keep on keepin’ on!! xoxo

  8. Wow….Go Ben! Your friends from Lancaster miss you, glad to hear you are doing well. Thanks for the cute updates and pictures!
    Debbie Hess

  9. Just read through your last few posts from the first ROP day until now. Thinking of you guys often and praying for more good days than bad. You’ve created one hell of a fighter, so I can only imagine great strides are mere moments away.

    Sending hugs from Seattle

    • Thanks Nancy! Hope all is well over there! Not looking like I will make it to Seattle this summer, will be busy with the fighter I think 🙂

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