Arthur is doing wonderfully - so much so even I believe "normal baby mode" applies!
He is (at last weigh-in) 12.7 lbs and proved to be a neutrophil machine at his last CBC!
Somehow things have been so busy (parents visiting, Lil's birthday, Christmastime, "life" events) or I have fallen asleep too early ("normal baby mode" = exhausted mother at end of day) to get a moment here to share how great things went on the 3rd of December.
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| Doesn't look like a "machine" does he? |
His
neutrophil count was 2,340! That's 4 for 4 - a consistency of normal numbers, which means we have been breathing sighs of relief and daring to trust that we are out of the woods.
His "monocytes" were 7,000 (which apparently was the type of white blood cell that mattered for him to get his live-virus rotoavirus vaccine). I will ask more about that next visit because I realize now I can't explain what they are well enough and I am not clear if his condition included low monocytes as well. All I can say is that those are the white blood cells that make "memory" - which is how vaccines work, and as his number was good, he is now up-to-date on all his vaccines.
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| At the Christmas Parade with Grammy |
The best news, with this consistent count, is that if he
gets sick he does not need to go in the hospital and does not need to automatically be on an antibiotic. He would get a CBC and then we'd just
watch him closely. So far, Lillian has had a cold and spiked a random high fever for a day and both Myers and I had small colds and thankfully, Arthur has managed to stay well.
The other fantastic news; he only needs to go
to UVA one more time next month!! Then he is done (pending of course, another normal count)!! He hasn't had a
"stick" since the third of December- it is so wonderful. SO WONDERFUL.
The relief kinda comes in waves - it's too
much - if it hit me all at once I couldn't absorb it. To say I'm am
thankful doesn't cut it - I am humbled and grateful beyond measure for
how okay my little guy is now. It was challenging enough for us to have
another child after... ...after a baby diagnosed with a serious heart defect and after loosing our sweet baby.
Gwen is still always on
our minds - Arthur is so full of smiles; he is just a happy guy full of
exuberant expressions...Sometimes when he catches my or his daddy's eye,
he lights up and kicks his arms and legs and smiles and "talks" and
bursts with happiness. Delight. That is the word - he seems simply
delighted to be here, with us three.
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| His feet are blurry because he is kickin with excitement and joy! |
Sometimes
I think I'd have a different, meaner grief if there were smiles of Gwen's
to let go of -- she wasn't quite there yet, she was so close to
smiling...and then, in the same moment all I can think of is how I long
to have her smiles among my memories of her...
And
I often stumble upon the awkward conundrum of how it is that CHOP
failed to instill in us a working understanding of Gwen's neutropenia beyond
that she had it-- I knew I wanted my next child tested, however that was
all my own volition; they hadn't instructed us in any manner besides what I would
describe as a side-comment, "you may want to look into genetic testing
if you have another child"...
The reality is, I
should and will address CHOP about this failure of communication and
education... However, had we known our next child would also face severe
neutropenia ... I honestly don't know which path we may have chosen...
I admit, "me of little faith"... We might have been too scared...
It
feels as though we were being looked out for... I'm so glad that we weren't better informed. Arthur is meant to be here. Gwen's short moment here and a pretty big misstep by her
hematologists at CHOP all gave way to this blessing - to this amazing
little person with bright eyes and bounding happiness...
It
will never make sense...and we live without our Gwen everyday; but I
look at Arthur and can't help but feel that some of Gwen's purpose was Arthur - and idea planted by a fellow baby-loss and heart-mom Megan, where she wrote about her little Wyatt, saying, "his purpose was Nolan." That always stuck in my head after I read that - it was so simple and beautiful; even as I'm not totally okay with that at all. Myers and I often talk about how we want all three of our kids here...
And having this amazing little guy doesn't really bring
peace, or closure, or healing even - "That Day" is still suck in my
mind as something to be fixed, to do over and get it right - the pain
only diminished and lessened in that it is familiar now, therefore seemingly
"healed."
Instead, I am more confused and more
humbled in having both Gwen and Arthur in my life and terrified of the
love I feel for my children here with me - playing with fire, having
kids is playing with fire. You love them so much... and that love can cause pain beyond measure.
Worth it all though, worth it all...but terrifying.
But I have a pretty good poker face:
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| From our "selfie" Iphone-photshoot at UVA (Gwen is in my opened heart charm) |
And
most of the time I'm either too challenged (Lil, ever my contrarian,
newly-turned five-year-old who's goal is to turn all my hair white
before I hit 40) or I'm too charmed (Arthur, who knocks my socks off with
his smile) on any given day to remember how scared I am - but I do hug
them tightly and sometimes a little too long... Lil squirms
out because she has little girl things to do...Arthur will someday too, but I'll just hug 'em close again next chance I
can.
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| Another "selfie" with Arthur |
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| What Lillian did when I left the room for a moment (he's going to have lots of fun with Lil as his big sister... oh boy, what a ride it's going to be!). |
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| "Mommy, mommy! Look! Arthur is drawing!!!" |
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Tears of joy over this :) And those last pics of Arthur and Lillian... so beautiful, so bittersweet. I add Gwen into the shot in my memory and see all three of your babies around the Christmas tree. Wish we could see him in person :)
ReplyDeleteI'm so glad that Arthur is doing well. He's such a lovely baby. It is so sweet to see him and Petra side-by-side, and I am angry along with you that I don't get to see Gwen and Silas that way.
ReplyDeleteI hope you know that when I said that it seemed like having Arthur was "a healing experience" for you, I didn't mean that I thought you were healed and done. Just that it seems like there's a change, and a good one.
I am overjoyed reading this account of "normal life" and so glad that less news means more of the hectic nature of life with two healthy little ones. May it continue so!
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