Month: January 2017

Our personal D-Day. October 31,2016. Halloween. The day our little one was diagnosed with type one diabetes.

My husband called me at work with the number I didn’t want to hear. He had taken our almost 3 year old daughter to the pediatrician to get checked for diabetes. I’m a nurse and the insatiable thirst, excessive urination, and increasing appetite had set off red flags for me that I could only ignore for so long. He called and only said “It’s over 500.” I instantly started crying, full tears right there at the nurse’s station.  My co-workers, couldn’t have been more supportive, hugs and boxes of kleenex came flying my way. Since our daughter, Frankie, was acting ok and not having any change in her level of consciousness the pediatrician let us drive ourselves to the hospital. I met Jason at home to get our stuff together. On the way home I called my mom to see if she could come down from the mountains and stay with our dogs since we had no idea when we’d be back.

An hour later, we were on our way to Children’s Hospital of Colorado ER with our bags packed. Here they checked Frankie for DKA — luckily she wasn’t in it; however, her blood sugar was now over 600.  The beauty of being a nurse, my daughter isn’t scared of hospitals at all. And luckily my daughter used to visit me at work regularly when I worked at Children’s. It was also good, to keep me distracted, to have the support of  two of my former co-workers and friends to come hang with us while we were waiting for a room upstairs. Our little munchkin was a trooper, not even a single tear with the IV start, blood draws, etc.. It helped that the child life specialist was amazing and since it was Halloween all of the nurses and techs were dressed up. Frankie’s main ER nurse was a kick ass ninja turtle. We finally got to our room on the 8th floor around 10:30pm and then we were discharged before 7:30am, so we could head to the Barbara Davis Center (BDC) for a full day of diabetes education. Damn, that night was a whirlwind. It was full of tears, both of sadness and anger.

I am so thankful for the BDC. If it was our lot in life to get this diagnosis, then it was fate that we were in Denver at the time.  BDC is one of the top juvenile diabetes centers in the United States and it’s easy to see why. From that very first, information filled day, we’ve been supported immensely.  November 1st we were assigned an entire team of medical professionals.  A social worker, a registered dietitian, a registered nurse, a nurse practitioner, and a pediatric endocrinologist. Sounds like I just introduced The Breakfast Club. There were confessions and  lunch, but no dancing montage. (“Don’t you, forget about me…” Insert air fist here)

Everyone did a great job explaining everything to my husband and me. Giving us plenty of time to ask questions, practice blood sugar checks and injections, and just giving us reassurance.  Near the end of the day, I realized we had been paired with the correct endocrinologist for us. We were talking baseball and great World Series games. He apologized to my husband for speaking so much to the RN in the room as he was writing down websites and we were talking research. I looked at  him and said “Since I apparently can’t treat this with essential oils, can I at least get some vegan insulin?” He looked at me, smirked and laughed. At that moment I knew he was the right endocrinologist for us, and that this was going to be okay.

And that is the day, ironically a day that revolves around strangers giving candy to children, that we found out that our daughter was just too freaking sweet (literally).

And of note: Our beloved Cubbies would go on to win the World Series in the best ever game 7, 1 day later on November 2.

“How did you know?” This is the number one question we are asked after people find  out our kiddo has type one diabetes. It’s a question that I sometimes dread to answer. It’s a question that has become a double edged sword for me. I get to educate people on the signs and symptoms of type one diabetes, especially in kids, which I think is extremely important. Knowing these could save someone’s life. However, I also have to admit to myself that I ignored the signs and symptoms longer than I should have.

I should preface this with, I tend to be a hypochondriac about health things at times. Working high risk labor and delivery for 13 years and seeing all the complications in both women and fetuses has made me this way. Those who know me, also know that I am a bit of a pessimist, I’m often waiting for the other shoe to drop. So, when I said to my mom, my husband, and a few co-workers “I think my kid is diabetic.” they all had the same reaction “You are overreacting.” “The odds are so slim.” “Just take a deep breath, she’s fine” I took some deep breaths and I went about our life as usual.

The hardest thing about the signs and symptoms of type one is that they can all be explained away by a variety of reasons or even written off simply as part of a growth spurt. I’m going to tell you how “we knew”. Which signs and symptoms my daughter had, and how it was easy to ignore them at first.

1) Insatiable thirst.   We live outside of Denver, we live at an elevation of 5869ft. We have extremely dry air. Everyone needs to drink more water at altitude in order to stay hydrated. My entire family carries around water bottles at all times, as do the majority of our friends. We never gave my daughter juice, she only drank water and milk. A few weeks before she was diagnosed, she stopped drinking her night time milk. Her water intake increased throughout the day, but I simply chalked it up to no longer drinking night time milk, makes sense she would replace one liquid with another in order to maintain hydration. It also is hard to keep track of a toddler’s water intake. I was filling her water bottle, my husband was filling it, at time she was even filling it since she could now reach the water dispenser on the fridge (damn long arms and puddles on the floor).  One day I really started paying attention, pretty sure she drank over 120 ounces of water. “OK, now that is a lot of water.”

2)Excessive urination. She wasn’t potty trained. She was our first kiddo. She was drinking a lot of water. We never limited fluids before bed. Argh!! What is a “normal” amount of urine for a 2.5 year old?? We had to change the bed a couple of times a week because she would leak out of an overnight diaper; however, she was such a heavy sleeper and would sleep a solid 11 hours a night.  When I say change the bed, that may be an understatement. She would wake up in a pool of water with her overnight diaper saturated to the point that we could wring it out if we would have wanted to. The final straw was when we threw an overnight diaper on her, put her in the car, drove 50 minutes to the zoo and her carseat and pants were soaked by the time we got there. “OK, now that is a lot of urine.”

3)Hunger. When this symptom happened, I was ecstatic. Our toddler is outgrowing the picky toddler stage and eating like a regular human being!!! Her appetite was back with a vengeance.  Breakfast, lunch, dinner, snacks, oh my! “OK, that is a lot of food for such a little body.”

4)Weight loss. I stare at my child every day. She’s so damn cute, I can’t help it. And as she is growing and learning, I’m just in complete amazement of how fucking cool this little person really is. I really didn’t notice the weight loss on a daily basis. In a few pictures we had taken I thought “oh, man, where did my baby go?” I thought she was finally getting taller and losing her toddler chub and starting to look like a little kid. When we weighed her she had lost 2-3 pounds, “OK, that is a lot of weight when you only weighed 33 pounds.”

5)Mood changes. HA! How the hell were we supposed to assess this?!? She was 2 years, 10 months at diagnosis. How do you even know if your toddler is having mood changes when she is almost a threenager? A girl who, I am proud to say, takes after her strong-willed, opinionated, stubborn mom. A girl who was starting to show that strong will at every possible chance. The whining was new, but I thought we were moving into the tantrum stage. The biggest mood change that we noticed was she wanted to be carried a lot and was starting to choose TV over going outside or to the park to play.”OK, this is a serious change from my active crazy, running, jumping, climbing kid.”

It’s a hard thing to admit as a parent that something is wrong with your kid. I spoke with a co-worker who had a 4 year old son diagnosed 5 months prior to mine. She asked about all the symptoms and encouraged listening to my mama gut and told me that things can get worse quickly (I’ll be forever thankful for her advice and push in the right direction).  I decided we couldn’t ignore the signs any longer.  My husband took our daughter to our pediatrician and we got the diagnosis.  “I was right!” Ugh, I used to love uttering that sentence…I never wanted to be more wrong about something in my life; I would have rather been right about a pregnancy scare with my college boyfriend. So began our life with type one diabetes and educating others on the signs and symptoms.

Following rules hasn’t paid off. We did everything right. We planned my pregnancy, I gave up alcohol throughout.  I didn’t take medications outside of the occasional tylenol.  I puked for 36 weeks when I was pregnant with my daughter, starting before my first missed period — I took zofran a few times, but all it did was help with nausea and give me constipation, I still vomited, so I chose to stop taking it. I exercised regularly, swimming and hiking up until my due date. I only gained 18 pounds the entire pregnancy. I ate as healthy as I could manage, and took my prenatal vitamin daily.  I never developed gestational diabetes or had an increase in blood pressure. When my daughter was born she went straight on my breast. She breastfed exclusively, no other foods, for the first 6 months of life. Then we started offering solids, homemade babyfood, real foods, everything except for honey before age one .She never had a drop of formula or cow’s milk until she was 12 months old. She never developed any food aversions or allergies. Nothing sugary until the fabulous smash cake on her first birthday.  She only drank milk and water, no juice. She got plenty of tummy time, exercise and sleep.  She had all her vaccines on schedule and without reaction. She hit all of her developmental milestones on time, even with having a buckle fracture in her wrist at 10 months old while learning to walk.  She had no screen time until her second birthday. No high fevers and no illnesses outside of the seasonal cold. We were fortunate enough that she never had to go to a daycare and was able to be with either my husband or I every day. My husband and I both wore her in wraps and soft structured carriers whenever possible. We cloth diapered as soon as we got home from the hospital. Our daughter was born in December 2013 and is still in a rear facing carseat, she hasn’t outgrown the limits of our seat and doesn’t know any differently.

Despite doing everything “right”, despite following all of the rules, on October 31, 2016, at 2 years 10 months old, our perfect daughter was diagnosed with Type 1 diabetes. We have zero family history on either side of Type 1 diabetes and very minimal history of autoimmune diseases in general. My toddler, you’re telling me my toddler has a chronic disease, requiring life sustaining medication (insulin), for which there is no known cure. Fucking fabulous…

Elisabeth Kubler Ross’ stages of grief started rapidly. Being a registered nurse (RN) I had read all about it in nursing school and seen it in action, but it is so much more intense when you’re living it. I also vacillate between the stages frequently. I hang out in the anger stage more than I would like to admit.  I know that anger isn’t going to help us move forward with this disease, but sometimes it feels damn good to be bitter.  Some days I still feel like I’m going to wake up and it’s all going to have been a bad dream.

We’re using our acceptance of the disease to take control of it and be our daughter’s pancreas to the best of our ability and maintain blood glucose values that are “in range” as often as possible. She started on an insulin pump 6 weeks after diagnosis and it’s going well. Not giving shots has made things seem a bit more “normal”. Now she’s a 3 year old who walks around wearing a kick ass pink polka dot fanny pack all of the time.

So for 2017, we’re throwing out the rules. We’re going to stay up late and have extra screen time, on occasion. We’re going to play with playdough in the house, go outside with wet hair, listen to music a little too loud and dance in our underwear (and a kick ass fanny pack).  Because the reality is the universe laughs in the face of following all the rules.