May 19 update

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A few of you have been asking for more photos, so I have attached a few new ones.
The first pic is of one of our ICU nurses, Melanie, with Addison.
Second one is the first time since getting into hospital that Addison got to feed from something other than the tube in her nose.
Third picture is of Addison’s new friend, a bear called Grace. For those of you who saw my series in September on organ donation and transplant, Grace is the little girl who had a kidney transplant with a kidney donated from herad Dennis. Grace came to visit Addison and brought this special heart bear for her new ‘transplant buddy’.
Last picture is of Addison in her ‘milk coma’.

Addison is continuing to do well today. And there is even talk about moving us up to a regular ward possibly on Sunday, which would be less than three weeks since we first arrived here. Hard to believe she has come so far, even with a few ‘complications’ along the way.

Her chylothorax is already doing better today with the special formula, so the dietitian has told us she will only have to be on the special formula for two weeks. By then, I will have a huge stockpile of breast milk in the freezer – perfect for aunties, uncles and grandparents who want to babysit down the road! I think Aaron and I will need at least one celebratory night out when we are finally home.

There is another possible ‘small’ post-surgery complication. (I think Addison likes being the center of attention.) She has has some air leaking from one of her lungs into her chest tube, which is to drain her chest cavity post surgery. The hope is that it will heal on its own. If it doesn’t, worst case scenario, Dr. Gandhi will have to surgically repair the hole. We are giving it a few more days to heal on its own so now there’s a new focus for your positive energy and prayers.

A follow-up EEG on her brain also looked good with no more subclinical seizure activity. For now, she’ll stay on the anti-seizure medication. It has minimal side effects and apparently works great for newborns so doctors are fine with that. There will be follow-up appointments and an MRI when she is recovered. For now, we’re not worrying about it.

Aaron and I went out for lunch today while my mom was on grandparent duty at the hospital…the first time we’ve left the hospital for a meal! It was great to get out and enjoy the sunshine. Definitely helps with keeping up that positive mood.

Love
Elaine, Aaron and Addison

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