am meds

Morning meds right now. 1 ml sodium chloride. 3 ml sodium bicarb. .3 ml iron. 1 ml multi vitamin. .8 ml amoxicillin. .3 ml phosphate. plus flush the broviac line. And 100 ml breastmilk with 2 t protein powder. Sigh.

Welcome to “normal.”


4 thoughts on “Syringes

  1. I’m a part of the Holistic Families of Des Moines group and wanted to pop over to your blog to see how things were going. I also have a child with special needs and know how adjusting to the new normal is incredibly difficult. Every time we have to do something so medical for our children, there is something that rises up in us, screaming that this is not the way it’s supposed to be! Eight months into the journey of parenting a special needs child, and I still have those moments frequently, but it’s getting less often, and the screaming isn’t as forceful. It’s horrible to watch your child suffer, but you also get to witness their strength and bright spirits and that gets you through the rougher days. Praying for you all!

    1. I said those exact words countless times while being induced, and I feel like I haven’t stopped saying them, mostly silently at this point. “It’s not supposed to be like this.” “This is not right.” Argh. And then I feel terrible because it seems like all the OTHER mothers don’t have those thoughts… so it’s nice to know they do. 🙂 Are you the one with the daughter with the trach?

  2. Yep, we all feel like that. We’re still just starting out too and yes, she has a trach and a gtube. She was born with choanal atresia, where her nasal passages were completely blocked by bone. We had no idea there was any problem, so she was born not breathing and then whisked off the nicu at Blank. She was later diagnosed with CHARGE syndrome. Spent 2 months in the hospital. ugh. There was definitely a grieving period, a feeling that our baby had died and was replaced with this other child. Grieving the family we thought we were going to have. And we had our share of temper tantrums, kicking and screaming that this was NOT happening! Even after she came home, it took months for us to bond and feel like she was really ours. I just felt like I was her nurse and not her mom. But now, it’s hard for me to even remember feeling she wasn’t the baby I carried those months. I love that little girl so fiercely it hurts! I wouldn’t trade her for that imaginary little girl I thought would be a part of our family ever. I hate watching her struggle, and like you, we have a long road ahead of us, but she is so amazing and definitely worth fighting for.
    I read your post about so many of the things you had to give up like the birth you wanted, circumcision, etc. That’s especially hard. There’s many days when I feel all I can give Evie is the lesser of two evils. We’ve had to do a lot of things I swore I wouldn’t do. haha. Like fortifying my milk, shots, letting go of breastfeeding her (I pump for her while still nursing my 2 1/2 yo), etc. It sucks. But over and over again, I have to remind myself that those were all ideals held for a “typical” child and Evie is anything but typical! She’s got her own story with her own needs and we’re learning to adapt. But many times it still sucks. A lot. Kinda funny though: I worked so hard to avoid too many ultrasounds, a c-section, and an epidural for myself and now Evie has had tons and tons of ultrasounds, abdominal surgery (gtube placement and fundoplication for reflux), and an epidural for that surgery. Sometimes all you can do is laugh at the irony. *sigh*
    Feel free to email me anytime.

  3. Yes, my awesome mom moment was leaving the NICU (left daddy in the hallway, as close as he could be during the procedure) while they removed Teddy’s epidural, because epidurals gross me out and I would NEVER EVER consent to having one. (But, I will admit, it worked wonders for him as far as pain relief, and seemed a better option than the morphene he had to have after his other 2 surgeries.) Thanks so much for this post, I can’t tell you how much it helps.

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