Yes, even babies can get type 1

Intuition. 

Mommy-gut. 

I just knew. 

Upon hearing that Elise was diagnosed at such a young age, I am often asked how we knew Elise had diabetes. The short answer is, at her 12 month well-child visit, the doctor did a urine test and found sugar. Elise had no symptoms except she didn't gain any weight between 9 and 12 months. A sign that something ominous was coming our way, but as a stand-alone symptom, nothing special. 

The long answer starts way before that. Probably closer to when she was 6 months old. Elise had a UTI. Then, strange fevers that would come and go every day. She would always start the day off normal, then her temperature would rise throughout the day until she was around 103 by bedtime. The next morning, everything would reset. 

She had another UTI. The fevers persisted. Thankfully, Elise's pediatrician didn't write me off as some crazy first-time mother whack-job. She believed me. Between the ages of 6 and 12 months, Elise had kidney ultrasounds, a CT scan, and a VCUG (a test using x-ray to determine if there are any bladder abnormalities). She was also seeing a pediatric Nephrologist (kidney doc). 

Everything kept coming back as normal. But my gut kept telling me that something was wrong. She wasn't the same little baby she had been just a few months before. She hardly ever smiled anymore. She was cranky. And those fevers just never went away. Still, there were none of the classic signs of type 1 diabetes. 

When she finally was diagnosed, she was in the very early stages; her fasting was in the 120s. Her A1C was 6.5. She wasn't even on insulin at first. But being vindicated has never been so heartbreaking.  

I often wonder how long it would have taken to recognize the tell-tale symptoms of type 1. Would her story, like so many of the babies, be one of almost losing her? As much as I hate the diagnosis, I am thankful we didn't have the added trauma of that. 

So why do I write this? Because sometimes, when I'm bored (which isn't all that often anymore as you can tell by my posting frequency), I look to see how people stumble onto my blog. And the phrases that make my heart skip a beat are ones like: 

Can babies have diabetes? 

Something is wrong with my baby 

Symptoms of diabetes

To those of you who find this post by googling something like the phrases above, I say this to you: Trust your gut. You know your child best. If your doctor scoffs at the notion of type 1, demand a test. It takes 5 seconds. If they won't, go to a pharmacy and buy a meter that comes with some strips. That $30 could save your child's life. Elise's pediatrician is amazing, but not all doctors are so willing to listen to the parents. 

And above all, if your child has any of the symptoms for type 1 diabetes; unexplained weight loss, unquenchable thirst, frequent urination, uncontrolled hunger, fatigue, nausea, stomach pain, blurred vision, rapid breathing or fruity-smelling breath, get them to the nearest ER as quickly as possible and ask them to test for type 1.

This post has been on my heart for awhile.  Ever since I read (yet another) story of a child passing away from undiagnosed type 1.  The parents sought help (multiple times), but the doctor ignored the symptoms, saying it was the flu.  This doesn't have to happen. It shouldn't.

Parents, know the symptoms.  And above all, trust yourselves.

Bringing home baby... again

Do you remember the day you left the hospital with your first born? The giddy excitement you felt at finally going home to be a family. The joy. The incredible high of gazing into that sweet face. I remember that there were twinges of fear, too. Most of them were hormonally-charged, but I was a little incredulous of the fact that the hospital was entrusting this tiny life to me; especially since I had NO idea what I was doing.

Almost one year to the day we brought Elise home for the first time, we were doing it again. This time from a different hospital, under very different circumstances. There was no joy. No excitement. No euphoric high.

Just fear.

A terrible, gut-wrenching fear. Because, once again, I was being sent out into the world, with a tiny life in my hands. And once again, I had NO idea what I was doing.

I remember vividly the panic I had, because just two hours after being discharged, Fred was on a plane to New York. Thankfully, my Mom was able to fly in, but I was all alone in that I was the only person in that house that could care for Elise. Somehow, I had managed to escape giving Elise a shot the entire time we were at the hospital, but now it was my time to step up.

Our first few weeks at home after diagnosis were eerily similar to when we brought Elise home as a newborn; learning schedules, trying to figure out her needs, lots of crying (from Mom and baby), and sleepless nights.

The only difference was, I was missing the joy. And I think it's that joy that helps you get over the complete shock of what it's like bringing home a baby for the first time. I look back and wonder how I managed to get through the first months post-dx without any joy to sustain me.

Honestly? I don't know. I think you just go on auto-pilot and do whatcha gotta do. If I could go back and talk to my post-dx self, I would tell her to find the joy where she can; in having medicine to treat your baby, in a beautiful day, in finding chocolate in the cupboard, in knowing that all the hard work, tears, sleepless nights and stress are worth it.



Because in just 2 1/2 short years, her little baby will be the most incredibly funny, smart, silly, beautiful, loving and wonderful 3 year old she could ever imagine.

Diabetes Dx Journey Part 2

***If you haven't read Part 1, then this post might not make sense. To read it, click here.

I couldn't believe what I was hearing when Elise's doc told us we needed to take her to Children's Hospital that night. I am so thankful that we were surrounded by some wonderful friends that were at our house for Elise's birthday party. They stayed with us until we had packed our bags, and even cleaned up our house.

We had also called some friends to see if they could look after our dog Seven while we were at the hospital. Pam and Michael live all the way in Richardson, but *just happened* to be in Irving at an event. If you don't know DFW geography, Irving is right on the way to the hospital from our house. Pam and Michael took wonderful care of Seven, even keeping her for a few days after we got home so we could get settled.

On the way to the hospital, all sorts of thoughts ran through my mind, mostly ones where I blamed myself for Elise being sick. It was hard to believe that my daughter, who looked as healthy as any other baby, had this horrible disease raging inside of her. I was also so scared of the unknown. I didn't know what this meant for Elise right now and in her future. And was praying hard, that somewhere, someone had made a mistake.

We checked into the hospital Saturday night and didn't leave until Tuesday afternoon. Those days were a whirlwind of doctors, nurses, information, education and lots and lots of tears. We learned what diabetes is and isn't, how to test blood sugar, how to give insulin shots, how to count carbs and monitor Elise's diet so her blood sugar wouldn't get too high or too low, and what to do if it did.

I've made a lot of progress since we were released from the hospital a week ago. I can now give Elise her insulin without any help; something that would have sent me into hysterics before (I have a teeny-tiny aversion to needles. Actually, make that an incredibly huge phobia). I can more-or-less figure out her carb intake without getting a headache, although I still have a lot to learn in that department. Who knew algebra would EVER come in handy? Thank God I have a husband that uses that part of his brain... solving for x makes me cry.

And thankfully, I can look at my baby girl without the word "broken" tarnishing her beautiful face. I hate that I felt this way, but I'm beginning to see she's a little girl who happens to have diabetes.

Just like like I'm a girl (okay, woman), who has chronic back pain, or you're a person that suffers from migraines, or you might know someone with arthritis, or your brother who is autistic, or that girl you went to school with who had epilepsy. You get my point? We all have our stuff, and it sucks. But it shouldn't define us. We're not broken, the world we live in is. And one day my back won't hurt, and my little girl will never need to be poked with another needle, ever again.

Diabetes Dx Journey Part 1

***This is a post from my other blog that I wrote right after Elise was dx. I wanted to repeat it here for those who haven't read it before.

A fluke. That is how we found out that Elise has diabetes. She had no symptoms, and we had no reason to suspect anything was wrong with her. Because she had been diagnosed with UTIs a few months ago, the doc decided to do a urine test at Elise's 12 month appointment just to make sure it was clean. I think they were as surprised as we were when they found sugar in her urine.

When I got the call Friday afternoon, my stomach dropped. The nurse said it could just be a mistake, and we should bring her in for a retest the next morning. I had a diabetic friend in junior high, so I knew what sugar in the urine meant. I hoped that it was just a mistake.

Saturday we were busy getting ready for Elise's first birthday party, there was a tonne of things to do, but first we had to go to the doctor's for the repeat urine test. We went home and waited for the news. When the doc called she said it was still positive for sugar, so she was waiting to see some results from the blood they had taken the day before. Fred had a lunch to go to, so I was home by myself when the doc called and told me we needed to take her for another blood test called a hemoglobin a1c. It would show us her blood sugar levels from the past few months.

So off we went to Children's Hospital ER in Plano. The reason we went to Plano was because (our doc's reasoning) it had only been open for 3 weeks, and wouldn't be as busy as Children's downtown. It wasn't really an emergency, but there wasn't anywhere we could get blood drawn and results back so quickly.

We made it home only 10 minutes before her party was supposed to start. We were about an hour into the party when we got the call. I started to cry and could barely think straight. Our doc told us we needed to check into Children's Hospital so they could monitor Elise. Stunned doesn't even begin to describe how we were feeling.

Click here to read part 2.