It's a different night but the same story that I have lived through too many times not to feel defeated and beaten down. By what, you might ask? Not my preschooler, per se, but her diagnosis of DI. People might hear me say things like "I was up with her five times last night. FIVE TIMES." and try and relate, or give me advice just let her cry it out, she's old enough now. And while that's true, this is what goes on in my head when I hear her up:
Is she wet? Are her cups empty? Did she eat anything salty today?
(Even though the Dr has reassured me that no matter what she eats, the ddavp should take care of it - big.fat.lie.) And so I get up, because I have to know. And when she is wet, and thirsty and needing a change of PJs and pull ups, along with a refill of all 18oz I go through the list in my head of what she ate and I berate myself for anything that could've caused a night like this.
DI. My worst foe.
I did wake up five times with Lily last night. Five times of hopping out of warm bed, 31 weeks pregnant (which with this little gymnast means that she mostly wakes up and tumbles around every.single.time. i get up with big sister!) And every time I got up with her was a total pull up change and 75% of the time, also a PJ change. It is so hard not to get frustrated and mad at Lily when, in fact, I am angry and frustrated with the DI and what it does to her.
Sometimes I can pinpoint a food item that I might have overlooked but most nights, as I lay there going through her meal list of the day, I cannot find anything that would've caused such a night. And these nights are so frequent.
Can you imagine changing a "big kid" pull up only to go back in the room 20 minutes later to find it full; To fill up a 9oz cup of water and watch your child drain it in 10 seconds and still ask for more; To sit your kid on the potty and watch her pee an adult amount of pee while she drinks from a sippy cup; to feel so helpless when she cries out with cracked dried lips, needing more water? And all of this is on medication. A medication that I am finally fed up with.
I feel like I am standing on the edge of a cliff and having to decide whether to brave the gusts that I am used to leaning into or take a leap of faith on a parachute that I've never used.
And so, defeated, tired and at a loss of where to turn, I have decided that I cannot stand on this cliff anymore trying to brave the wind. I am so tired and I am so frustrated. As much as I shudder at the thought of moving to shots of ddavp, I am reassured by (only one other) ddavp mom that made the switch and said it was the best decision they ever made. She assures me the shots are worth it - so much more stable with 100% of the medicine getting absorbed.
I have to live with the fact that Lily will be getting 3-4 shots a day (2-3 of ddavp and 1 of hgh) and the fact that we will have to live through a hospitalization for making the big switch. I no longer feel like this is me being selfish (As in, I am the one fed up with this) because this is making sleeping and regular everyday life difficult for LB.
I can only hope and pray that this is what we are missing. It feels like we are the only ones struggling with such a hard time with DI. Maybe this is what we need. Prayers and strength appreciated while we set up all the necessary steps to take the plunge.
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Trust your instincts Allie, you're an amazing mom to Lily, and she thrives because of all the energy, time, and awareness you have for her. Sending my love and prayers to you all. <3
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