This post is for a very special group of Moms within the D-Mom group. I have an unfortunate membership in a very elite club... being the Mom of a baby diabetic. Though Elise is no longer a baby, membership in this club is for a lifetime.
Being the parent of a diabetic is hard. Being a parent of a baby diabetic is a whole new level. The problems are many... trying to make her eat. How much will she eat? How many carbs ended up on the floor, in her hair or on her face? Drawing up 1/2 (and sometimes 1/4) units of insulin. Having to use diluted insulin. How do you tell if she's low? Checking a blood sugar while your child is sleeping in a crib. How do you reason with a baby who doesn't want a shot? And having to hold down a screaming baby to administer insulin. It. Sucks.
I don't claim to have all the answers, but I do have a few things that really helped me. And besides being a spewing ground for my angst, this blog is also supposed to be an outreach to people that are starting along the same pathways that I have walked.
Stop blaming yourself.
Even though I KNEW it wasn't my fault, I still carried that awful guilt for about 6 months. I was convinced that it was something I had/hadn't done. I look back now and just shake my head at the hours wasted wrestling with the guilt. The plain and simple truth is; it wasn't you. You didn't cause your baby to have Type 1 Diabetes. They don't really know what causes it, but it certainly wasn't you. Now stop it.
Find Community
You need people. You can't do this alone. Well, you can. But I'm quite certain you'll be certifiably insane soon. The fact that you're reading blogs is a good start. Find a support group in your area. Other D-Moms and Dads. Find someone.
Weigh it!
D-Babies are so little that even 5 grams of carbs can mean a huge swing in their BG (with Elise, even 3g could do it). A scale makes all the difference. If you don't already, start weighing your child's food. When you feel up to it, read my post on factors. They saved my brain. About 6 months post-dx, we started using carb factors and it made all the difference in the world. It's a lot of work at first, but that's when we started to see somewhat predictable numbers.
Wait, there's a blood ketone meter?
Reyna has an awesome post about this, so I'll just add my two cents. Get a blood ketone meter. Get one now. Because nothing sucks like needing to test for ketones and fishing those cotton balls out of the diaper only to find that they never got peed on, or worse are covered in poop. And yes, I have squeezed urine from a poop-laden cotton ball. Sans gloves. Then I bleached my hands (no I didn't. Don't do that. Please).
You can lead a baby to water...
But man oh man, you sure can't make them drink. Especially when they HAVE to. I'll never forget a fight I had with a CDE right after Elise was diagnosed. As well as a high BG, she had large ketones, but would not drink anything. The CDE wanted me to go out and buy some Crystal Light or something similar. Never mind that my 12 month old has never had anything but breast milk or water, this "expert" wanted me to pour some chemical concoction down my baby's throat. At wits end, I tried it, and of course, she wouldn't drink it.
What DID work, was variety. We own about 10 different sippy cups. I bought some fun straws for Elise to sip water from, and she learned very early on to drink from a cup like a big girl because it was one of her favourite ways to drink water. Also a favourite, were bottles with the sports top on them. Another trick I used was to let her suck on some crushed ice, which also helped with teething.
Labels, labels everywhere
Labels. Lots of 'em. Everywhere, and everything. I think I even saw the dog sporting one the other day. Okay, not really. But anything that is food, and that Elise eats, has a label on it.
For example... I make her pasta ahead of time, when I am less busy. I make about a serving at a time (as per the package), which for her equals about 4 servings. So on the container I store it in, I write the following on a small, white, sticky label:
*What it is
*Date it was made
*The carb factor
This makes preparing her meals very quick and easy. I don't have to try and remember how many carbs are in that pasta, or how much I should give her.
I also put labels with the carb factors on the boxes of all the snacks she eats.
The trouble with shots
This one was a hard one for us. When she was first diagnosed, we had special toys we could distract her with that were only for when she was getting a shot. Then we used stickers and stamps on the back of her hand. When she grew out of that phase, we really struggled to find a replacement. It was only after first taste of an M&M that we realized that she has a serious jones for those things. To this day, when she gets a shot, she also gets an M&M. To encourage her to try new sites (like her bum), we would offer her two M&Ms.
Being the Mom of a baby diabetic is hard. Just ask Meri. Or Laura. Shannon and Jen can tell you too. We're all Moms whose children were diagnosed so young... some before they could walk, talk, or had teeth. If you are the parent of a newly diagnosed diabetic baby and you need a shoulder to cry on, there's an email link on my profile. Please... feel free to use it.
I've been where you are. I know your tears. I know your heart is breaking. But you can do it, and if you need me, I am here.
9 months ago
My heart fills with pride and my eyes with tears. You are such a wonderful support and resource to so many Jo. I am so fortunate to have found you and the others through the DOC.
ReplyDelete(((HUGS)))
Great post Joanne! I recently met two new women who have children that are 18 and 22 months with recent diagnoses. It brought me back to those days...
ReplyDeleteThey were so hard but we made it through and our kids made it through and we are all ok! I do, however, think someone should write a book specifically for children diagnosed under the age of 1. I remember feeling like there was NOTHING out there for me to get support from. Maybe we should all collaborate on one!
what a sweet post. I know having a 19 month old was very difficult I can't even imagine with babes under a year old that are still sleeping way more than waking, how would you even spot the signs? I was just looking back at Isaac's pics from days before/after his dx and can't believe how little he was...
ReplyDeleteGREAT post, Jo!
ReplyDeleteBeing the mommy of a baby diabetic IS hard. Sugar Boy was just over two when dx'd. I am so thankful that we are mostly out of those baby days! :)
Great post, Jo! Baby Diabetics are HARD. The Superhero was just 18 months old when dx and I wish I had known more then that I have learned up until now.
ReplyDeleteYou need to put this on your list of helpful posts! This is a must-read for those whose little littles have been diagnosed.
ReplyDeleteBTW, thanks for the warm welcome back to the DOC! :)