September 28, 2013

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Ruthe had THREE doctors appointments this past week! And each one of them went well! 

Aside from scheduling her next surgery and sending us right back to that dang hospital, she's right on track from a cardiology standpoint. We won't really know how much of her heart they'll work on until Monday or Tuesday, and then that can always change in the operating room anyway.  I'd really love it if they could just get everything worked out in one shot, but they might have to do a couple staged surgeries.  Since Ruthe decided to grow her heart a little crazy, and it's not really one of the defects that has a go-to surgery, her surgeon will have to combine a few different procedures (from what I understand anyway) and he'll either do them all on the 10th or do part of it now and another part later. It could take as many as 3 procedures to finish the job.  But then, fingers crossed, she'll be done with heart surgery until she's around 2 years old.  Then we'll get to start worrying about her cleft palate repair - oh, joy.

This appointment was a little different because they did an EKG in addition to her regular ultrasound.  It was a whole new experience for all of us.  And Ruthe was not a fan.  Especially since the little stickers wouldn't stick to her skin so they had to tape them all down (and then peel all that tape off).



The next doctor was her pediatric surgeon.  She said that Ruthe's g-tube site looks great, and put in the order for her mickey button. That will make it so she doesn't have to have a tube sticking out of her 24/7. (My mom calls it her tail... weird.)  The mickey button is sort of like the plug on an inner-tube, and lays pretty fat on Ruthe's stomach.  Once she gets that we'll be able to start tummy-time and letting Ruthe lean more to each side, getting ready to roll over.  (Of course, that will all be put back on hold after her heart surgery, but we can at least give her a little taste of different positions!)  

And lastly, the pediatrician said Ruthe is doing great! She weighs a full ELEVEN pounds, and is following the same growth trend as a"normal" baby.  It looked to be that she's around the 50th percentile, but I don't know if that chart was for heart babies, or preemies, or healthy babies.  Ruthe also got her 2-month shots at the pediatrician.  She HATED it.  I know I shouldn't have laughed, but it was just a little amusing that the baby who's had open heart surgery, gets her heels pricked once a week, and can sit through having her blood drawn, would cry so hard over a few measley shots.  It makes me feel bad that I know she's going to need the special once-a-month flu shots they give all babies at risk for RSV.  :(

We got Ruthe one of these fancy pacifiers called a Wubbanub.  It's one of the green hospital soothies sewn into a small stuffed toy, think beanie baby size/shape.  Ruthe LOVES hers.  And I'm so glad, because I was getting so tired of always holding the bink in her mouth.  I'd never even heard of these things, until is saw a picture of another baby holding one on Instagram.  



Since Ruthe was born I've tagged a lot of her pictures #chd and #heartwarrior and #openheartsurgery, which brought me a lot of "likes" from other parents of heart babies.  It's been so great to see these other babies grow, and to feel like part of a group.  I had been pretty hesitant to follow any of their accounts at first, because I feel like I'm intruding on their privacy, but now I am so glad I did.  I've "met" some of the strongest and bravest parents through Instagram.  It just proves to me that social media can really be a blessing, if you use it responsibly.  It also helps to encourage me to keep blogging about Ruthe and her fight against her heart defect, because someday there could be a new mom just like me searching for answers or stories or just a friendly "you can do this".  

I want to be the same kind of example that I've found in others of strength and inspiration and love.  I want people to feel comfortable asking me about Ruthe's heart defect, and her g-tube, and diGeorge syndrome.  It is SCARY sitting in a hospital watching your baby fight through a condition that you don't understandable and couldn't ever do anything about.  You feel helpless, and you let yourself feel like you're the one to blame.  I did.  I still do, sometimes.  I feel like I don't really know the best ways to take care of my baby.  I feel like I missed that "golden hour" of bonding right after birth and now we'll never have that pure connection.  I feel like it was my job to grow her beautiful little body, but I did it wrong and now she has to pay the price.  

I want other parents to read this blog, or see my Facebook and Instagram posts, and know that everyone has felt exactly the same as they're feeling at some point in the journey of raising a heart baby.  It's scary and nerve-wracking and overwhelming and full of the worst kind of heartache when your perfect baby has a four-inch scar on their chest.  But it's also incredible and beautiful and a bring-you-to-your-knees kind of amazing when you look into that baby's face and you can see their determination.  And I won't even mention how wonderful it is when they recognize you for the first time from that hospital isolette and it just looks like their whole body is reaching out to you.

Now, if you'll excuse me, I'm going to go smother my Ruthe with kisses and love. 

Heart babies are the best.

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