quick update-Tuesday

Liver disease is unpredictable.  That is the word that a few other moms I've talked to use.  Another mom I talked to last year said "This all just feels like a story I am telling now when I talk about it."  I find myself looking forward to that day, too.  

Remember before I said that the hope is that Zoe can push through this hiccup and then continue to grow?  That is still the hope, but for some reason, I just don't get the feeling that she is going to push through totally.  I don't know why I have that feeling and I wish that I didn't.  I am still trying to be positive. It is definitely this strange intersection of having faith and needing science, trusting science and still keeping faith.  When I say "not pushing through totally" I mean that transplant feels sooner than later.  I have started to feel a bit more scared about everything. When I ask Seth if he feels scared, he doesn't.  He says we are "doing what we need to do" to help her get to the point of transplant.  He did mention a few worries about her future the other day, but Seth doesn't carry the worried feeling that I do for the present, and I think that's a good thing.

Througout the weekend we watched as Zoe became more yellow.  She hasn't been her normal happy self, although we have gotten some smiles out of her.  It's just so obvious that she feels bad, it is heartbreaking.  She is irritable and fussy, she whimpers in her sleep.  Yesterday morning her color seemed better, but as the day went on, it worsened.  The color of her eyes and skin is just an indicator that her liver isn't functioning right, which we already know.  

Her labs yesterday actually came back worse.  I'm not sure what it all means yet, if anything other than we just keep doing what we are doing.  I will take her later today for a Vitamin K injection.  Vitamin K is what helps your blood clot and her numbers indicated she needed another injection. I want to ask if the heparin injections she gets for the PICC have anything to do with those numbers, but we also had to get a Vitamin K injection in December, too, so I don't know.   Her bilirubin was also up, which explains her color.  When bilirubin doesn't leave your body, it causes your skin and eyes to be yellow/green.  

I know that organ donation is a gift, I mean it is THE gift of life and allows for an opportunity at the second (third) chance at life, but I still can't help this sad feeling I have that if her liver donor ends up being a deceased donor, it will probably be a baby/toddler.  That means somewhere out there, another family will have this life changing event happen, and they don't even know it yet.  When I talked about this with another mom, she said she had the same feelings and somebody told her "some babies were placed here to save other babies."  Tear.  Even though we aren't listed for transplant yet, at some point it is coming, so I guess it's better to work through all of these things I am thinking and feeling now.  I guess when it comes to what little I have thought about organ donation in the past, it was always around an adult who maybe already lived a long life, but the truth is, babies and kids make the list, too.  Yes the liver can be split, but the preference for Zoe at this point is a whole liver.  I see why people affected by organ donation become passionate about awareness.  

So, anyway.  I hope Zoe has a better day today.  Here are a few pictures I have taken with my camera, you can see her color changes daily.  (and I've finally found a hobby that might stick!)

In the first two, guess what's not PICCtured? (bad joke)

Last thing, I read a comment on here that somebody asked if COTA takes a percentage of the funds and the answer is that they do not.  100 percent of the funds raised are used for transplant related expenses, this is why we decided to start a campaign for COTA in honor of Zoe.  

Thanks for reading. 


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