Hope for Baby Bennett: (Almost) getting a change in altitude

Monday, June 7, 2010

(Almost) getting a change in altitude

They keep trying to move us upstairs (from the CTICU on the 2nd floor to the step-down unit on the 6th floor), but they still don't have a bed available. Word is that we might get moved upstairs tomorrow, but we'll believe it when it happens! In the meantime, we're enjoying the hospitality of the CTICU and the fact that I can come home each night to give Sierra a sense of normalcy.

Bodie continues to improve, thankfully! His latest echo shows that his heart function is pretty much back to where it was prior to the infections (praise God!)!!! After the last time I posted, he had a few days of losing weight, but gained again yesterday, so we're hopeful that as he keeps increasing his feeds, he will be back on the path of continuing to gain weight. He's getting a little stronger each day and is taking more and more by mouth. He still gets 3 feeds overnight via his ng tube, so we're working toward him taking in more by mouth during the day so we can eliminate one of those feeds, and then change the other 2 to oral feeds. Once we can do that, as long as he can gain weight, we should be able to go home!!! Not sure when that will be - like everything else in this crazy journey of patience, it's all up to Bodie. But I'm sure it will be at least a few days before we have him doing full oral feeds, and then he'll have to gain for a few days before they'll release him, I'm sure. So, while we're definitely on the way home, it will likely be a little while still.

Tonight, please pray that Bodie increases his oral feeds SOON so that we can GO HOME!

Here's a few new pics of the little guy (who, by the way, has hit the cutest smiliest stage EVER!):

Checking himself out in the mirror (can you say narcissist, anyone?):

And, a quick pic of the rest of us at my brother and sister-in-law's baby shower this weekend (they're expecting a baby boy in a month!), since we figure you should see us as well. I keep telling Bodie he's not the only game in town, but I'm not so sure he gets that yet... :-)

5 comments:

AnonymousJune 7, 2010 at 10:54 PM
You win the cutest family of the year award! You look gorgeous Amy!!!! Bodie is adorable! Sierra is sooo cute! Dusk you're lookin' good. Miss you guys!!!! Praying for you all to be home again. Love, Erin
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AnonymousJune 7, 2010 at 11:16 PM
My Bodie! I love you so much, my handsome! Sleep with angels tonight and keep getting well! Amy, Dusk and my sweet Sierra: you all look lovely in the picture. God Bless you all. Good night, my Bodie. Keep being a miracle on this earth! Big hugs and tons of kisses, Nairi
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JennyJune 8, 2010 at 5:09 AM
So glad to hear that things are going so well! These infections have been a battle but Bodie has done great. Heart babies are my heros- they are stronger then I think I could ever be. Being in the CTICU is not so bad (if you don't have to be there.)- such better care and attention. Maybe you'll get lucky and just get discharged right from CTICU. Wouldn't that be crazy? :)
Heart Hugs,
Jenny (mom to Aly- HLHS)
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AnonymousJune 8, 2010 at 7:32 AM
Love the smiles Bodie!! Hope the next time I see you is at home but may need to sneak in another visit up at CHLA - especially if you're smiling like that!! =o) Stay strong Amy - hopefully you are getting a glimpse of light at the end of the tunnel. Thanks for sharing the beautiful photos!! Hugs to you all - Sara Hale and Family
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JillianJune 8, 2010 at 4:32 PM
I am so glad to hear he gained weight, I hope he keeps it up and I hope you get to go home soon! He is one adorable baby! :):) Your whole family is adorable!
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The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."