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Day 16- Happy and hurt

When I walked in this morning I thought Atiksh’s hair looked different, it looked very clean and combed to one side but I told myself that it was not possible as he was on the CPAP . However during rounds when they were discussing whether to come down on his CPAP settings the nurse mentioned that she had removed his mask and washed his hair- so that was what was different!!! She said that he did well on room air with no support and hence a wean would be good. Though he can breathe on his own they will wean only slowly so as to not overwork his little lungs and also so that he can use his energy to grow more than just breathe, as he still has to work had to breathe.

We came home for lunch took some rest and went back early afternoon today just to see if he would be awake and much to our happiness he was. The nurse was just fixing his CPAP mask as he walked in and she mentioned ” I had just had everything out to change him” and I mentioned that we missed seeing his tube free face again. She immediately offered to remove everything so that we can take a look and take a picture. For the first time today we saw his face- our baby’s face- clear with no tubes and he is beautiful. It was very emotional. Thanks nurse Elizabeth!

The happiness was a little short lived. We noticed that he was getting slight jerks, at times in his hands, at times his entire body, more like tremors. We mentioned it to the nurse and got the nurse we were not quite prepared to hear- Withdrawals!!! They are weaning down his pain killers which he has had since birth and when they do that these CDH babies undergo withdrawals. They get cranky, they are fussy and they get tremors. Though I have read many blogs that talk about this brutal truth is is heart wrenching to see your baby go through that. We sat and held his hands and gave him the strength he needs. He will be suffering more after his surgery once they try and wean it faster…we are digging deep to find the energy and strength for that. I hope it is there. Lying down and closing my eyes brings back the images and wish there was something more I could do.

Ajit was very heart broken too, seeing his baby go through this. He just is returning from seeing Atiksh, apparently the weaning of the versed did not sit well and he was crying, mad and cranky. As I have mentioned before it is heart breaking to see your baby cry when you can do nothing, absolutely nothing to help. They gave him a single dose of more pain med to help and it calmed him down a bit. I hope he has a good night.

We both feel helpless. Hoping tomorrow is a better day.

Baby with no tubes…

 

 

 

 

 

 

Kicking daddy…

 

 

 

 

 

 

 

Giving stink eye to the CPAP machine…

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3 comments on “Day 16- Happy and hurt

  1. It chokes just to read. Cant imagine what you all must be going through. Hope and pray that God gives you the strength.

  2. Oooo!!! No tubes!!! Beautiful!

  3. May God give all of you the strength!! It’s is heart wrenching to read about his pain. I really hope all this passes through very fast and you are able hold him and console and life returns to
    Normalcy as early as possible. God bless
    Aparna & Ramasundar

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