Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Tuesday, March 12, 2013

This week at the endocrinologist...

.... everything was FINE!  :)


OK, I'll give you the details, don't beg! 

This week went much, much better on my new 7 mini-meal a day plan.  I actually managed to gain back a pound or two.  I am now totally against fois gras, because I really empathize with those poor ducks, but it was worth it to me to stay off insulin and have such good blood sugar numbers.

Yes, Kara, I am so with you about the eating 7 times a day diet.  I can't WAIT to just eat when I feel hungry and go with anything nutritious I feel like, instead of looking longingly at an APPLE, for goodness sake, and thinking... hmmmm... how can I put protein into this mini meal.  I mean, have you tried eating an apple with a tin of sardines?  Yeah, yeah, I eat it with cheese, but then there is a limit to how much cheese you really should eat in one day, considering how much fat is in cheese. 

Thankfully, since I only am eating more fat until the Baby arrives, I am sort of just not worrying too much, within reason.  I think my arteries can handle it for 6 weeks.  And yes, One Tired Momma, cottage cheese is my friend!  It is low in fat and has a good amount of protein to go with the carbs.  The only thing that really drives me nuts about cottage cheese is that it is HIGH IN SALT!  I have yet to find a brand that is not high in salt...  ah well.  Again, it is only for 6 weeks.    Who knew eating such a "healthy" diabetic diet could be so unhealthy!  ;)

And thank you for the suggestion about steak, Kara, because yes I LOVE steak, but I don't usually eat it very often because: 1. expensive, 2. not as good for you as chicken.  But this week I am for sure having me some steak!  I'm not sure I'll manage a potato with it, but we will see.  I'm finding the best carbs for me are very high fiber.  Which is why I am eating between a cup to a cup and a half of All Bran each day.  Half a cup is 2 servings of carbs, but it is also almost HALF of your daily fiber.

I thought I ate quite a bit of fiber before, but now it's just crazy.  Maybe all that fiber is washing the fat and salt right out of my system!  Anyhooooo.... I actually have not missed prune juice on this new extremely high fiber diet.

Sorry, I think I got way carried away in all the details there, more than you wanted.

Ahem.   When I saw the endocrinologist today, she was happy with my weight gain.  She was happy with my blood sugar readings too.  She felt that eating 7 times a day in small doses of carbs was the key.  I agree, but also know that never sitting down until an hour after I eat is also a part of it.

And because she was happy with things today, I DON'T have to see her until TWO weeks, instead of one!  Yahoooooo!  Not that she isn't nice, but all these appointments are killing me!

When I asked her about having Baby at the birth centre she smiled and said "Well, NO insulin!"  She also said that it was up to my midwife and I, she was OK with letting us figure out the details, but she felt things were going well.

In fact, I asked her today if I would need an ultrasound to check on Baby's weight and she said she didn't have anything to do with that, it was up to my midwife to decide if it was needed.  I was relieved by that.  From what I know, ultrasounds are notoriously bad at accurate estimates of baby weight anyway.  I actually would rather trust my midwife to 'feel' Baby and guesstimate her weight.  (though that isn't totally accurate either, obviously!)

When it comes to Baby's weight, I feel like I can't win.  So I have decided I can't lose either.  Most people I know sort of expect that a diabetes baby will be big.  If my baby is over 8 pounds, they are going to say it was diabetes.  But all my momma's babies were over 8 pounds and she never had diabetes.  Big babies run in the gene pool, people.  In fact, if this baby is any less than Caeden (9 pounds, 11oz) then I'm going to feel that diabetes was not a factor in Baby's weight.

As nice as it may be to have a small baby, like Joel was (to me, OK, I realize that 7 pounds is actually not small, just average, but after 9 pounds and change it seemed tiny) a small baby will be a bit worrying to me.  Because if Baby is less than 8 pounds, I'll have this niggling doubt as to whether Baby is small because she shares the same gene defect as Joel had.  There you have it.  I both want, and don't want a small baby. 

But the only part of that I control for the moment is my blood sugar.  And thank the good Lord, right now that is fine.  So when Baby comes, I'm just going to go with whatever weight she comes in.

I am counting down the days.  I can't wait to see her, and I cry about 5 times a day with both joy of anticipation and dread at the possible realization that might come with it.

Thanks, fellow GD sufferers, for the encouragement and understanding.  It is so nice you understand!  It gets a bit lonely out here in GD land.

Saturday, March 9, 2013

If you can stand it, MORE about diabetes!

Here is my new plan for keeping my blood sugars normal and still not losing, or even gaining, some weight:

I eat 1-2 carbs EVERY TWO HOURS, along with a protein, and then I squeeze in some veggies here and there too.

I don't know which I am looking forward to more, being able to eat some of the foods I have been unable to eat right now (like cow's milk, cause right now I'm having almond milk),  or being able NOT to eat what and when I DON'T want to.  The jury is out on that one.  The jury is not out on almond milk though.  It definitely sounds a lot more tasty than it is.  At least, the kind I drink, which has 0% sugar in it.

Anyway, it has only been three & a half days since I saw the endocrinologist, and I have been able to gain back maybe a bit over a pound on this new, strict regime.  And my blood sugars are looking really good, as well.  So I am very happy about that.  If I gain back all three-four of the pounds I lost, I might start to relax the 2 hour eating schedule just a bit.  That would be nice.

Because my strict eating schedule means eating 7 times a day (I might go as long as 2 & 1/2 hours between a couple of the mini-meals).  And about this time in pregnancy, I feel FULL.  Really, really FULL.   And if you could just grab a couple crackers (or better yet, a donut) for a snack, then you might be hungry an hour or so later.  But if you HAVE to eat lots of fiber and some protein with that carb, then let me tell you, it stays with you a LOT longer. 

Yeah, and no donuts for incentive either.  Not even too much fruit.  Which is something I really crave, but if I eat a piece of fruit, then YOU GUESSED IT, I gotta eat some good amount of protein with it.  And I'm supposed to limit my fruit to 3 servings a day, but I might cheat a bit because my blood sugars are OK, and because if you are not extremely hungry and you crave fruit, well, it works.   But only 15 grapes (seriously) and NOT 20!  Because one day I made that mistake, though the diabetic chart said 15, I thought, "really??" and ate more like 20 and then it was bad... so I can never do that again.

This is likely all fairly boring for you all.  Minuscule details of my eating/managing my diabetes.  Just skim it, I'll never know!  It's just my life right now.  Steve comes home and asks me how my day was and what happened.  I just give him a look...  I ate, I cleaned, I took a brief rest, I ate, I cleaned, I briefly played a game with Caeden, I ate, I walked, I had a short break on the computer, I ate... you get the idea, repeat SEVEN times over.  It's a bit boring at times, I might add.  Writing this blog is the most fun I've had all day...  :)

Here is one thing I am grateful for.  These cd's I bought that are parts of the Bible made into songs.  Yes, really, I know that sounds like "super spiritual" or something.  It's not.  It's just really comforting and encouraging, because we (Caeden & I) listen to them lots in a day and then while I am cleaning the songs are in my head.  In fact, all night long, every time I wake up to go to the bathroom, there is one of the songs playing in my head.

And so while it would be very easy to be even more completely obsessed with diabetes, and what I eat, and the health of this baby, and what happens when Baby comes, it is a nice mental relief.  (because obsessed really seems the right word to describe this level of mental & emotional involvement)  Instead, my background mental noise is "We are more than conquerors through Him that loved us." and "Finally brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or praiseworthy, think about such things..."

I'm grateful for this grace of God.

The date of Joel's death approaches closer.  I worry that it will get 'missed' in all the other stuff going on.  I don't think that would be, ultimately, very good for me.  So I am hoping that I'll be able to prepare for that a bit before it happens.  Whew, this is sure an emotionally dense time for me.

Thanks, friends and family, for caring enough to keep up with all this.  I truly, truly appreciate it.  I know that at times it is not the most fascinating reading.  It's nice to have a place to put it down, though.  And a continual surprise to me that some of you still bother to read it!!  Either you are very, very bored people, or you are incredibly loyal.  I'll go with the loyalty!  :)

Tuesday, March 5, 2013

Week 34

Well, time for an update.  I'm at 34 weeks.  That means I'm getting there.  But I still have to hang on for at least three weeks before I get hopeful for Baby to arrive, because it might not be good for her to get here before she hits 37 weeks...

I saw the endocrinologist today.  That went better than I had expected.  She told me very strictly I was NOT to lose any more weight.  OK.  I promised to do my very best.  It is hard though.  I'm exercising (which for me just really means: walking Caeden to school, walking various thing to a different and better place in the house, vacuuming, carrying laundry up and down stairs and basically doing any other thing that keeps me ON my feet and NOT sitting down) lots for a woman 8 months pregnant.  All that exercise and I'm not allowed to boost my calorie intake with any 'goodies.'

So, I'm going to try my best to put as many HEALTHY carbs in as many places/times as I can.  This is not easy.  And it is not fun.  It's good that I like challenges, but at times this one seems like it is going to do me in.

Anyway, the endo told me no more losing weight!  But she was happy with my blood sugars.  Happy enough.  And she was very kind to me.  She gave me a little trick I can do.  I did have two reading this week that were .1 or .2 over, but my 2 hour readings were still perfect so she said I couldn't tell anyone (so keep this under your hat) but I could just mostly do 2 hour readings.  She said the 2 hour reading was the most important reading to keep normal.

That made me feel a bit more relaxed about it all.  I will still have to be careful about what I eat, because I know from experience that if my blood sugar goes too high, not even in 2 hours will it be normal.  But it does mean that I don't have to be quite as stressed, as long as I am eating well, my 2 hours should be OK, and I'll never know if the one hour readings were a touch over if I don't take em!

I was very happy that so far, no insulin was needed.  Why is this important?  Well, aside from the fact that I'll have to watch things even more closely on insulin, and aside from the fact that I'm not crazy about doing insulin while preggers (yes, yes, I know tons of women do take insulin and they are fine during pregnancy), the fact remains that if I am on insulin, I can NOT deliver Baby at the Birth Centre.

And I really, really want to be able to do that.  If it is possible.  I LOVE it there.  It is amazing.  And, it is NOT a hospital.  I know some people would find that the opposite of comforting.  Not so much me.  :)

When Joel died, he died at home.  It was a good, good decision.  I'm glad he ended his life here with us at home, and not at the hospital.  Did I mention that I do not love the hospital?  I appreciate the hospital.  It is a necessary evil and I am grateful for what it can do.

But there are two times I don't want my child there.  When they enter the world, and when they leave it.  Oh, if it must be, it must be.  I'm not totally insane.  But if Baby turns out to have PBD, there will be LOTS of hospital in between birth and death.  I just want the beginning to NOT be there if it can be helped.

And I am selfish.  I want those few precious hours to ourselves.  The Birth Centre is just so... peaceful.  Relaxed.  Quiet.  Private.  The lights turn low.  Did I mention the huge bath I can labour and even give birth in?  No bustle of nurses in and out.  It's just so... private.  Yes the midwives are there, but I know them.  And after Baby is born, we can all cuddle up on the bed and be together for a few hours before we have to think about going to the hospital for a blood test.

The other thing on my mind is the niggling feeling that Baby might show up earlier than 37 weeks.  And then the Birth Centre is right out anyway.  Why do I think she might come early?  I don't know, and I hope I am wrong (but so wrong that she doesn't appear until 41 weeks) but I just have this niggle.  Last night, all night, I had some uncomfortable Braxton Hicks.  I know I got them with the other two as well... but I thought maybe they didn't appear until close to delivery time.  But I could be wrong.  I hope so.  If Baby comes too soon, not only will she be born in hospital but then we'd have to stay there for a while.  That would not be so fun.

Mostly, though I just want to have her already.  I look at her picture on my fridge everyday and I can't wait to hold her and see her face.

Which brings me to the last thing I want to say today.  Yes, I really AM joyful about Baby.  No, nothing has "stolen my joy" about her.  Joel's deathaversy is March 23rd, and there it is.  I mourn Joel.  The future is uncertain.  There are tears.  Tears do not need to be cured or prayed away, because tears are not bad.  They do NOT indicate that I have no joy about Baby.  They indicate that I lost a precious son two years ago on the 23rd, and that the future of this girl is unsure and that I have feelings about those two things.

But this Baby is a blessing and I do not forget it.  I am enjoying her everyday.  I spend a good portion of my time, hand to belly, just playing "What is that part?"  Just touching her through my own skin.

And, I offer as proof, the following pictures of the ridiculous amount I have spent buying baby clothes, just anticipating her arrival.  Oh, and some of the items are proof of the ridiculous amount other people have spent too.  I have enjoyed their folly as much as my own!  So I had to include those items too.






Do you think I have enough PINK sleepers??  Oh yeah, this is a baby GIRL we are having!  And we are very, very excited.  Amidst all the tears, mourning, diabetes, and uncertainty, we are thrilled to our bones.

Thank you, to the good God who has blessed us in so many ways.  And who never has criticised my tears, but who has brought me peace in the middle of the storm.