Wednesday, July 28, 2010

Diagnosis is just the beginning....

I feel like there's so much more to our diagnosis story than what I've already written.  Realizing that something was wrong and identifying what that something was doesn't even begin to tell the story.  And it's probably not even the most important part of the story.  So, here we go...the rest of the story:

Lily was admitted to her room after 10:00 at night on August 10th.  Poor Leo was exhausted by that point.  Luckily, he was still mostly just breastfeeding, so at least he hadn't gone hungry!  I walked up to Lily's room with my husband and Lily and had to immediately head back down to our car with Leo.  Leaving Lily there was one of the absolute hardest things I've ever had to do!  For practicality, I knew my husband had to be the one to stay with her.  But the mom side of me felt like she needed me more.  Or maybe it was just the fear of falling to pieces that made me want to be the one to stay.  I knew that as long as I was there with Lily, I couldn't afford to let myself shatter into a million pieces.  I had to hold it together.  The hospital Lily was admitted to was a good 25 minute drive from home.  To be completely honest, I probably shouldn't have been driving that night.  Imagine this....10:15 at night, it's pitch black, middle of Minnesota's "other season" (road construction), I have a 7-month-old child asleep in the backseat, and I'm sobbing my heart out as I drive past my exit.  Not the best situation.  But I made it home safely, put Leo to bed, and then sat there, unable to sleep and still crying.  I think I finally managed to cry myself to sleep at some point, just a few hours before having to return to the hospital for the education sessions that they give parents of newly diagnosed children.  Those poor educators and doctors!  I don't think they quite knew what to do with us.  How do you educate a parent of a diabetic who has had diabetes for more than 20 years herself?  I tried to encourage them as much as I could to do as they normally would.  I may have been diabetic for a long time, but for my husband, it was quite different to go from being the spouse of a diabetic to the parent of a diabetic.

For us, the hospital stay was probably the worst part.  We were at Children's Hospital in St. Paul.  An excellent hospital.  But there was one major problem.  The protocols for how to deal with a diabetic patient don't take into consideration the differences between a toddler and a school-aged child.  We had some major issues.  As most parents know, toddlers eat.  Often.  Their little tummies don't hold much and Lily was still in the 2-hour eating pattern.  Every two hours, she wanted something to eat.  She was hungry.  The nurses would only give her low-carb foods.  And they'd often forget to bring her a snack altogether.  At one point during our two-day stay, Lily was so hungry and frustrated about not getting anything to eat and not being able to communicate what she needed that she started banging her head on her hospital bed!  Would you believe that my heart breaks more over that than over her diagnosis?  The nurses did try as much as they could to accommodate Lily's needs, but sugar-free Popsicles and  meat and cheese trays were just not cutting it for Lily.  Luckily, her stay only lasted two nights and on the second day, we were able to take her home, after a quick (or, not-so-quick) stop at the pharmacy.

Now THAT is where the story really starts.  Bringing home a diabetic child invokes nearly the same emotions as bringing home a newborn.  The fear and anxiety over doing something wrong, of forgetting key concerns, of failing to adequately care for your child.  It all comes rushing back when they give you all these new rules for providing for that child.  In an ideal world, we would be able to follow every instruction that the doctors gave us.  We'd be able to care for our child perfectly, controlling their blood sugars to make it possible for them to feel as normal as they are able to.  We'd be able to feed them the snacks we were told to feed them, balanced and nutritious meals that are prepared with love and care to give the best balance for their little diabetic bodies.  But this isn't a perfect world and what you wish your child would eat is not always what your child wants to eat.  My husband really tried hard to offer Lily all low-carb snacks.  Lunch meat, cheese slices, carrots.  We quickly discovered that when your diabetic weighs less that 30 lbs, there is no such thing as a "free-food".  Even four grams of carbohydrates would shoot Lily's blood sugars to the moon.  And she quickly got burnt out on meat and cheese.  She wanted fresh fruit.  Every time she ate, we would have to give her an injection.  Which meant we also had to make sure that every time she ate, she consumed at least 20 grams of carbohydrates.  If we didn't give her insulin, she'd be horribly high.  If she didn't eat enough carbohydrates, she'd go low.  And really, no matter what we did, her blood sugars never fell where we thought they should.  It drove us nuts and the stress of it started to take a real toll.  We got snappy with each other.  We became sleep-deprived, stressed, unhappy.  None of that was Lily's fault and none of it was because of her diabetes.  We both had some serious coping-flaws and needed help figuring out what to do with our new reality.

Is it awful of me to say "to be continued" at this point?  It's getting late and I need to get some sleep.  But I do plan to return and tell more of the story.  It's cathartic to get it all out!  To anyone out there reading, thanks for sticking with it!  I hope I'm not boring anyone to tears!

Friday, July 23, 2010


Dear Blog,
I've been avoiding you.  We're coming up on Lily's one-year anniversary of being diagnosed and I know I need to write down the story of that awful day.  But I don't want to think about it.  I don't want to relive it.  So I'm avoiding you and putting off the inevitable.  Now that I'm done with my Christmas in July craft exchange gifts (which I will post pictures of later!), I have no more excuses for avoiding you. I am, to recount and relive the events that brought my world crashing down around me.

These are pictures of Lily.  I took them around 2:30 p.m. on August 10, 2009.  I remember thinking just how adorable it was that she'd fallen asleep in her Elmo chair while watching a show.  She'd given up on napping and was very rare that she'd even randomly fall asleep.  And there I was, as her mommy who should have known better, thinking it was adorable and she must have just worn herself out, playing with friends at a play-date that morning.  I thought nothing of it.  Until she woke up from nap around 3:15 and asked me for a juice box.  I'm not big on giving the kids juice, but I'd just recently bought some organic juice pouches by a brand called Honest Kids.  Lily hated them!  They were bland and flavorless, like severely-watered down juice.  But she woke up and asked for one anyway.  I handed one to her.  She sucked the entire thing down in about two minutes flat. She asked for a second juice box.  I gave her one.  Two minutes later, the box was empty and she wanted a third.  You know that feeling you get when you just know something is wrong?  In that heartbeat when you realize that the house you thought you'd built with bricks is actually constructed of playing cards and they're all falling down around you?  That was my moment.  My world crashed down.  I knew.  I didn't want to know, but I did.  Being diabetic myself, I pulled out my own meter and checked her blood sugar, hoping until the very last second that it would show me something other than what I was expecting.  Five seconds later, HI flashed on the screen.  I tested Lily twice more, hoping it was a fluke.  Maybe her fingers were sticky.  I tested with a toe.  HI.  Maybe she'd stepped in something sticky.  Third time would be the charm, right?  HI.  I picked up the phone, crying and nearly hysterical, and called my husband.  He was just getting ready to head home from work and I had to break the news to him over the phone.  I told him Lily's blood sugar was over 600 and I was getting the kids ready to head off to the ER.

My poor husband.  He's much calmer in bad situations than I am.  I freak out first, then take a breath and start dealing with the situation.  He deals and saves the freak-out for later.  He met us at the ER and we sat there, waiting to be called back.  I wish I'd had the presence of mind during all of that to think of just common sense things.  Lily hadn't eaten anything since lunch.  We didn't make it into a room until nearly 6:00.  Two hours in an Emergency Room waiting area is just too much for a 2-year-old girl.  Especially without anything to eat.  I kept getting her more water to drink (high blood sugars = excessive thirst).  But no food.  Four hours later and after being forwarded on to a new Emergency Room (our local hospital doesn't deal with pediatric diabetes, so we were sent to St. Paul's Children's Hospital), I finally had the presence of mind to ask the nurse for something for Lily to eat.  At 10:00 p.m., Lily was finally admitted into her own hospital room and we were able to get her settled in to sleep for the night.

I have many regrets over that day.  I wish I'd been calmer.  I wish I'd thought more about what Lily might be feeling, other than that she was sick.  I wish the day had never happened and that Lily was still the healthy, non-diabetic child I had wanted her to be.  I sobbed for two days straight, whenever I was alone, which was a lot since I was still breastfeeding a 7-month-old Leo and my husband was the one staying at the hospital with Lily.  I wish I'd been able to be the one to stay at the hospital with Lily.  So many wishes and all the wanting in the world won't make a single one of them come true.  But here's the thing....when life throws something like this at you, there are always other things happening around you that can help put your situation in perspective.  During the two days that Lily was in the hospital, I talked a lot with my family.  One of my sisters is a nurse in a rural area of Minnesota.  During a conversation with her, she mentioned a classmate of mine and the situation that his family was going through.  He had a daughter nearly the same age as Lily.  They'd received the news just a couple of weeks before that their little girl was very sick.  Leukemia.  Two weeks was all they got.  Two weeks with their beautiful little girl before having to say good-bye to her.  Perspective.  How horrendously heartbreaking it would be to go through that.  After hearing that, there was one thought that stuck in my mind.  I can deal with anything.  Diabetes is a challenge, especially when it's striking at your toddler.  But diabetes is life.  Diabetes is nothing compared with leukemia.  I can deal with this.  

Just one more thought to leave with everyone and anyone who happens across my blog...parenting is difficult. But, oh my, is it worth it!  Having a child will break your heart daily.  Shatter it into a million pieces.  And in the same heartbeat, it glues all those pieces back together in a new and more complex and amazing shape.  Glues it back together stronger than it was before.  Someone who doesn't have children yet can't imagine and there's no way of describing the bitter-sweetness that having a child adds to your life.  Someone who isn't a parent can't may look at the story of a family saying good-bye to a child and decide that the heartbreak wouldn't be worth it.  But those of you with children know that one minute with that child is worth so much more than a billion minutes without.  No parent would willingly choose to not have had their child, no matter how short of a time they have with them.

My brick house may be made with cards and may have crashed down around me, but it can be put back together again.  And the new house is so much bigger and better than before.

Wednesday, July 7, 2010

Bugs, bugs, everywhere!

Life has a way of making sure you never get complacent, doesn't it?  I had to make an unexpected trip to Lily's pediatrician's office yesterday.  Lily had a couple of bug bites that looked kind of odd.  Round, red bump for the first couple of days.  Normal.  But then they turned into little red bumps in the middle of a round, red circle.  We never did find the bug that bit her and have no idea what kind of a bug it was.  But since this is Minnesota and you can never be too safe where bugs are concerned, her doctor is treating it as a possible Lyme disease infection.  Two weeks of antibiotics.  For a normal child, this probably wouldn't be much of a problem.  For a diabetic child, it's usually not so simple.  You see, diabetic children tend to have a sweeter body chemistry than other children.  You kill off the good bacteria along with the bad bacteria and there's nothing left to keep the yeast in check.  So, the two-week wait begins...we'll finish up the course of antibiotics and most likely need a second trip to the doctor in order to deal with a yeast-overgrowth, possibly in the form of thrush.

For all you other d-moms out there, a simple equation....DIABETES + ANTIBIOTICS = NOT A GOOD COMBINATION!

At least I'm not too worried about the Lyme disease though, right?  If that is what her bites are, we're catching it very early.  She's shown no signs of fever or of being ill yet.  Just the bites.  Here's to hoping it all clears up quickly!

Monday, July 5, 2010

A little of this and a little of that....

I've been busy.  My husband has been on vacation from work for the last week, which has been fantastic since he's let me sleep in so much!  Nothing like catching up on all that missed sleep, right?  I've also made the mistake of signing up to take part in two Christmas in July craft exchanges.  I'm late sending my crafts out and still need to work on finishing them up quick.  And the friends of my husband's that I was working on a baby blanket for had their baby three weeks early, which meant I needed to finish up the blanket quick.  It's amazing how things can just pile up sometimes, isn't it?  So, here's a few pictures of what I've been working on and a few tips for d-moms....

My very first baby blanket

The matching hat

Now for the know how hard it is to deny a 3-year-old diabetic child a snack when they're in the midst of an insulin reaction, even after you've given them enough carbs to cover the reaction?  Well, here's our solution to that:

Lily loves her pickles!

I'll post more when I've finished my craft exchange projects.  Need to finish them and get them off in the mail.  I just have to hope that the recipients of them think they're worth the wait!

Friday, July 2, 2010