It all clicks in the middle of a Wednesday night. I awake and look at our baby monitor and notice that Lily’s gray sleep sack looks darker on the bottom half, like it’s maybe wet? I go into her room and her entire crib is soaked – her sheets, her sleep sack, her skin. Drenched. My mind races back to two nights before when she woke in the middle of the night desperately crying out for water and chugged an entire sippy cup. I start replaying the days, weeks prior when she couldn’t seem to quench her thirst, no matter how much she drank. But it was summer and it was hot out, right? Then I think about the never-ending wet diapers that caused a terrible diaper rash. I had been blaming it on the new diapers we were using – surely they just were just sub-par diapers. Right?
Then I think about her breath. That chemically, acetone, sweet smell both my mom and I noticed coming from her sweet little mouth. Shit. No. No. No. I panic. My mind just put together the last piece of an awful puzzle. I instinctively know in an instant, but can’t quite admit it to myself yet. It’s type 1 diabetes. I know the symptoms because I have a family history of this autoimmune issue and I’ve always been told to watch out for it in myself.
I wake my husband up to help me deal with this wet mess and I tell him quietly, almost afraid to say it, that I think she’s exhibiting all the symptoms of diabetes. He’s not a worrier, but I can see it in him now. This wet mess is just too much, especially as it follows weeks filled with her unquenchable thirst, irritability, behavior changes, and fatigue. He was visibly concerned. We agree to try and be calm until the morning when we can research it some more and make a doctor’s appointment. We both have to work the next day and I’m pretty sure the first thing we both do is Google “type 1 diabetes symptoms in toddlers” at our desks.
Every single symptom lined up. All of these odd, seemingly stand-alone symptoms that had been increasing over the previous month or two suddenly made horrible sense. There was that one morning when we went in to get her out of her crib and there was vomit everywhere. Her recent insatiable appetite. Her blood shot weary eyes, and super long naps. It was all coming together to paint a picture of a child who was very ill.
I made an appointment to see her pediatrician that day and though I’m supposed to be working for the next couple hours, all I can do was Google things about young children with type 1. I know in my heart this is what she has and I’m trying to get a glimpse into the world of parents who care for children with this chronic disease.
My husband meets us at the doctor’s office. We give the doctor a run-down of her symptoms and my family history with type 1. The clinic assistant tapes a urine collection bag inside her diaper and they give her a finger prick for a blood glucose test. Then we wait. The doctor comes back in and — I kid you not — he has tears in his eyes. Bless him. I start crying before he says anything. I know. I already knew. Through his cracking voice and tears he tells us that her blood glucose was well over 400 (a normal range is 80-100) and she had sugar and ketones in her urine. “We’re admitting you to Children’s right now,” he says. “They’ll be waiting for you.”
And just like that our world as we knew it changes forever. I begin sobbing and Lily seems so concerned and confused, which makes me cry more. I ask my husband to take her to look at the fish tank in the lobby so that I can try to calm myself down.
When we get to the ER they take us immediately back into a triage room where we will spend the next excruciating seven hours. We’re told she’s in DKA, or diabetic ketoacidosis, which is life-threatening. But they say we caught it early and can likely avoid the ICU. DKA happens when your body has had elevated blood sugars for long periods of time. It often goes mistreated because the symptoms are obscure and can seem flu-like once it gets really bad. Children die every year because it is misdiagnosed. If you’re ever concerned ask your doctor to do a quick blood glucose test. Learn more about DKA here.
So here we are in the ER. She’s so hungry and thirsty but not allowed to eat or drink anything. They need to establish three IV lines (two for different fluids and one for insulin) — on a dehydrated toddler with tiny veins. This took countless tries. Finally they sedate her with Adavan because she’s like a wild feral animal after about the third attempt. I’ve left the room because it’s too much for me to handle and I don’t want her to see me freaking out. My husband does a great job remaining calm for her. Around 2 a.m. they announce that our room on the 8th floor is ready and we make the move. But rest is nowhere in sight. Blood sugar, neurological, and IV checks happen every hour. And then there are insulin injections — the beginning of millions that she will receive in her lifetime.
The following days are the most overwhelming and exhausting of my life. We cram months, maybe even years worth of education into mere hours.
When we leave, we will be expected to keep her alive, to get it all right, to be her pancreas.
Our new reality: we inject her multiple times a day with a liquid that keeps her alive, but can also kill her if we give her too much.
There are few times in your life when you are truly forced to evaluate the material you are made of. Do you buck up or do you break? I never thought of myself as a particularly strong person until Lily came into my life. I brought her into this world naturally and completely unmedicated and I’ve never felt so empowered and strong in my skin. This diagnosis experience was like a second birth: We again left the hospital with our daughter looking to a new life full of scary unknowns. Most days I feel simultaneously weak and scared, but also brave and badass. Yet another lesson this girl has taught me –you can be all of that at once, it only makes you that much stronger.
Note: This is the only picture I have from that first hospital stay. It was actually taken after we had been discharged and had just spent all day learning how to care for Lily at the Barbara Davis Center across the street. I didn’t want to remember her looking the way she did during those days in DKA – all hooked up to machines and miserable. I’m glad I don’t have those images to dwell on and can instead look at the beautiful thriving girl in front of me.