Slow progress

Benjamin almost made it a week off of CPAP but had to go back on yesterday. He was breathing very heavily and his oxygen saturation was dropping. Last night he had rough patches when they took him off again so they may put him on a more scheduled CPAP weaning program.

As you can imagine, this is super frustrating. We were really hoping he wouldn’t need to go back on and CPAP would be something he could kick for good. That would mean they could get his hernia fixed and we could just focus on the feeding. But I suppose we don’t want to rush him – it’s not like we have a CPAP at home if he starts desatting there.

On the feeding front – we are making headway. He takes a bottle for a bit of almost every feed (and finishes a couple of bottles a day). Amy and I are getting much better at it and even I feel much more confident feeding him. And he is over 6 pounds now!

We are still waiting to get the full update from the eye surgeon, but the short version the nurse shared with us is that Ben’s right eye is doing what its supposed to do, but the doctor had a hard time even seeing the retina in the left eye. We are crossing our fingers that this doesn’t mean we should lose hope on the left eye, but at the very least we are happy the right eye is hopeful.

I just realized how often I use the word “hope”… I guess it’s appropriate, feels like hoping is our full-time job.

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Cuddle time with mom

And at home, Benjamin’s room is ready and full of presents from our wonderful friends and family (thank you thank you thank you). We have a pediatrician picked (though his name sounds like a super villain). And the Car Seat Lady is going to evaluate our car seat and the installation in the car (might need to trade in our tiny Scion XA for something a little bigger…).

The fact of the matter is- we are so sick of the hospital and not having Benjamin home. It’s been nearly 5 months of this. At some point early on it stopped wearing on us because it became the new normal. But seriously – enough already.

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17 thoughts on “Slow progress

  1. Someone should tell Ben about those presents — perhaps he’l be a bit more motivated to leave the hospital :). (“Ben! At home we have REALLY CUTE OUTFITS FOR YOU!!!!!!”)

  2. When I saw Benjamin this weekend, he whispered to me that he’s terribly anxious to go home but this is real hard work for him. He’s trying his best and he hopes you’re not impatient with him. When Mommy & Daddy leave to go home, he’s sad and misses their touch, their kisses and his Mommy’s scent. He just needs a little more time. Please be patient.

  3. Yeah! Enough already! (hang in there….)

  4. Yes, hope is a full-time job for all parents (or at least it should be!)–one of the many hats we wear (is your head getting hot yet?).

    I’m *hoping that you can do this job from home soon, and that your hopes begin to exponentially multiply in limitless variations into the far future with each precious day.

    You are two of the bravest people I know. Being brave is another one of those hats, isn't it…

  5. I have a feeling he will be home soon. I am sure the waiting and wanting of having Ben at home with you is frustrating but can you imagine the happiness you are going to feel when you walk into the apartment with him for the first time. It will be amazing and wonderful. Cayman will be so excited to. Once this happens you will have current new memories all the rest will start to fade but of course will always be there. You have waited this long for your amazing child to come home, it will be soon now. We love you all and of course keep you all in our prayers as usual.

  6. Patience, you don’t want to take him home to soon. When the time is right. I do understand what you are saying. Five months has been to long. Thank goodness for the hospitals and all they have done for Mr. Ben. Thinking of all thee of you and hope Ben is able to return home with you and Amy soon. Take care.

  7. My thoughts and prayers have been and continue to be with the three of you. He is one lucky guy to have parents with so much hope and love! I read all your posts and apologize for not writing more, but you continue to be very much in my thoughts. Go Ben!

  8. Don’t have any useful words, just wanted to let you know that we’re thinking of you guys. Every time I see the red highchair I wonder when Ben will sit in it and kick and demand his cheerios…

  9. You guys are all amazing. Hang in there. And I know that usually Donna Summer songs are mostly good to help when housecleaning, but I did have an image of all the nurses in the NICU doing a choreographed routine to the Donna Summer/Barbra Streisand dance club gem “Enough is Enough”. Maybe it would just take a pounding disco beat and some moves stolen from the TV show “Solid Gold” to give Benjamin that extra boost of encouragement. 🙂

    • Bill- the image is now stuck in my head. I wonder if it would go against union rules to get them to do a choreographed number…

  10. Dearest Joe and Amy,

    The patience and strength of character you two possess is outstanding. Somewhere, you will muster the energy to keep running through this marathon. From all outward appearances, you’re on the 25th mile. Mom, Dad, and Ben will do it, one step after the other. . . and we’ll all cheer you on. When you cross the finish line consisting of your apartment threshold, HUNDREDS of people will be overjoyed, looking out for you, and there to help you recoup. We love you!

    All gravity aside, over 6 pounds!! Woo hoo! Wow, Benjamin, what a chunker you are!! 🙂

    • Thank you Kate and Bill!
      I’m suspecting it’s going to be more of an ironman type thing – which sucks because I’m not a very strong swimmer (which is why I always wear swimmies). Cannot wait for your little girl to play with Ben!

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