I have tried so many times to write this post.  So, so, so many times.  While Joey’s heart has been calm, happy, steady and strong – mine has been all over the place.

I have a lot to tell you about this day...
I have a lot to tell you about this day…

To start – Joey’s heart.  Um, it’s pretty kick ass, it could probably kick that jerky Albany surgeon’s ass.  For real.  His right ventricle has grown, with appropriate determination.  The right side of his heart is handling approximately 2/3s of his blood flow – which is EXCITING.  His sats have been hanging out at 89/90, and his breathing is so much calmer than it was before.  He is on oxygen at night until we can get a sleep study done.

Our issue is weight – that which his body is losing, and that which I can’t seem to shake from my shoulders.

The formula that they have put Joey on because of the Chylothorax just doesn’t work with his body.  He crys and vomits with almost every feed – not spit up, VOMIT.  We’ve been working together to try and make it work for him, but it’s simply not happening.  He eats a good amount, hits his goals each day, but then throws almost everything up.

Thursday we go back to Boston for follow ups, one with the Director of the Growth and Nutrition program and another with our cardiologist (OH! Watch THIS and then THIS).  We will be talking about getting Joey back on breastmilk, even if it’s spun (a whole new world of DIY) and possibly tube feeds at night.  This will allow his body to be nourished without expending calories, which he is in desperate need of right now.

I am all over the place – as usual.  I get in these fits where I wish we could just do regular family stuff, but we can’t right now. Although, I’m not quite sure what I think “regular family stuff” actually is…there is so much that is just due to Joey being a baby.  Yes, he is working on a different schedule (for the love of pie, I will be SO HAPPY when he can support his own head), so things are a little more drawn out.  On the flip side, I have been able to really treasure some really little things – like watching him use the slightest extension today to roll off his belly onto his back (Buffy, if you are reading this – that actually happened today).  WIth Malcolm, it was like bing bang boom – he was flipping all over the place.

Speaking of Malcolm…

“Momma, when your heart is broken I’m going to fix it, okay?”



I got myself together and we talked about how Joey’s heart isn’t broken, it just works differently than ours do.  And as a matter of fact, our hearts may actually work differently too… the parallels here, the total “stops” that he has been helping me see.  Wow.  Malcolm needs his own talk show, 3.25 is amazing, so so amazing.  We have had SO MUCH fun since being home, a steadiness we have all been missing.

There are so many things that I want to write about, I think that’s part of my hesitation – what is too much?  I am so happy and so sad at the same time.  This is so fucking hard and so fucking easy, AT THE SAME TIME.  I have never felt so whole.  Every time I cry I end up feeling bigger, more present, and more me.  I can say to you – I don’t know what to say…

So, next?  I need to get this boy fattened up – back on breast milk, if we need a feeding tube so be it.  My fingers are crossed that we will both be back for the weekend.  I’m ready for some solid time home.


5 thoughts on “Weight

  1. Hoping for answers and visualizing baby fat rolls happening soon. It’s okay to take it one hour at a time rather than one day.

  2. Sending you hugs and positive energy for your heart and his. And weight gain wishes, and normal life dreams. In a way, I know what you mean. I struggle with chronic illness, and it makes everything so much MORE. I’m more happy, more sad. I see more, I feel more, and I worry about the more that I miss out on with my family, and also in my life, but at the same time feel so blessed that being sick has slowed me down and made me see how delicious life is. I can only imagine this is all intensified when it involves your baby.
    ❤ keep on keepin on. One heartbeat at a time.

  3. Sending you a heart full of mothers’ love and peace and all the prayers ever spoken. I’m going with visualizations of huge baby fat roll and lots of good breast milk:) love! love !love to your family.xoxo

  4. Hi! Sending Love and Light!
    I can relate to the fear about weight. When my baby had infant botulism we had to feed her with an NG tube in the hospital and then at home for a while. Once we got our flow with it it went pretty well. We put breast milk in it. We did combo of breastfeeding and NG tube. If you are still lactating and want an amazing consultant, I found Dr. Lorelei was INCREDIBLE and the only one able to deal with our unique and rare case: http://www.dlhbbreastfeedingmed.com/

  5. You & your Sweet family…. you’re soooo amazing. So strong. I could read your blog forever, so by all means, share away!!
    Much love, light, healing, strength, laughter, joy and delicious baby fat dreams (& realities!) heading your way!
    Thank you and yours for being so inspirational. ❤

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