Anguish

I'm not sure what to even title this post, since I feel the need to just ramble on and on and pour out my heart. Call it pregnancy hormones. Call it being a mother. Call it being tired. I don't know... It's part of the parenting journey right now, so here it will be documented. I need to include the disclaimer that it probably will sound more melodramatic than it is, or perhaps not, but it's my parenting state of mind right now. And I just need to write to feel like I'm sorting out my thoughts a little bit, because right now they feel so jumbled up.

Where to start? I guess, thank you, God, that my child doesn't have cancer. That I'm not facing that grim and heart-wrenching reality right now like some others. Because I KNOW things could be 10,000 times worse than they are right now. So thank you, Heavenly Father! I DO get that my daily life is still incredibly great and "normal". I, in no way, take that for granted.

I know I posted, just a smidgen over a year ago, about our diabetic scare with Ellison when her blood sugar was 362 and we were told to go immediately to Brenner's Children's Hospital to be admitted since our 2 year old Little Button had diabetes. What a roller coaster of a day that was, and I remember all too well feeling like we were walking on eggshells for the days and weeks that followed, keeping a close eye on her blood sugar. Since it seemed to be a flukey thing, we were told it was possibly a stress reaction, but still others told us it could be pre-diabetes. Apparently it occurs sometimes with those just entering diabetes since the pancreas is still functioning somewhat or even pretty decently yet. So after months of checking daily, then weekly, then just if she seemed to have any bizarre symptoms or illnesses out of the ordinary, we relaxed quite a bit. Everything was normal as could be.

So over the course of the past, I don't know, 6-9 months or so, in the parenting of our 3 year old, we decided to start cracking down on her picky eating, and I would no longer make her a separate dinner from ours simply because she wasn't willing to try what we were having. So we started to stick to the rule, "If you don't eat your dinner, or at least try it, you won't have anything else to eat before bed." If she cried that she was hungry before bed, well, then she was offered dinner again. Well, Little Miss has a very strong will. There have been a few times that she has gone to bed hungry. The first time it happened, she woke up puking saying her tummy was sick, and we pretty much figured it was because of an empty stomach since she snapped completely out of it within a few hours. This would happen every few months or so, whenever she would refuse to try dinner. People kept telling me it would only happen once or twice, then she'd get the picture. Ha! As it was happening the few times that it did over several months, I would check her blood sugar, and it would be quite low. Like, in the 50's or 40's. Didn't think TOO much of it. Well, it's been occurring more frequently lately. What was every few months, has turned into 1 month ago, then 2 weeks ago, then a few nights ago. Her blood sugars have gotten as low as 42 when I check it. She wakes up pale, shaky, complaining that her legs aren't working, she doesn't feel like talking, and she either has a sick stomach or she's puking and can't keep anything down. I give her things like juice or a popsicle, and sometimes she'll hold it down, and other times she just keeps puking. Every time this has happened, it lasts for 2-4 hours, then she completely snaps out of it, perks up, eats like a horse, and goes about her business as if she was never sick to begin with. The scary thing for us, is that when the last episode happened 5 days ago, she actually had eaten some dinner. She didn't go to bed hungry. So I thought, enough is enough, and called to get her in to the pediatrician. I was assuming she must have hypoglycemia, which I know many people have, but was thinking I'd just like to have peace of mind that they could make sure it wasn't a pancreatic tumor or something causing it since she's only 3. After all, our bodies are supposed to regulate our blood sugars within a certain range at all times. So I thought it was benign enough - we'd be told she's fine, it's no big deal, feed her small, frequent meals, and we'd just live with it as many people do. I was surprised a little when Dr. Lentz said yes, she could just have hypoglycemia without any known cause, but "the picture that's more concerning to me is the history of the prior high glucose level". Thinking I was going in for reassurance, I came out of the appointment with him being concerned about her truly becoming a diabetic.

He explained how she's already had a documented well-elevated blood sugar and was being admitted for diabetes. New diabetics often go through what's called a "honeymoon phase" where their pancreas is still functioning pretty well, but it's starting to peter out some here and there before the full-blown diabetes kicks in. That period of time can be as long as a year or so, sometimes even a little longer. Also, he said it's typical for diabetics to spike elevated blood sugars in the middle of the night, the still-somewhat-functioning pancreas finally dumps some insulin into the body, then you're left with low blood sugars by morning. He said that's what he's concerned about with Ellison. He checked her urine, and it didn't show glucose, but it did show ketones, which of course can fit with that scenario. In our research, we know that can also happen with ketonic hypoglycemia, which often kids grow out of by age 8-9. So he said she definitely needs to see an endocrinologist, and the office would get her in as soon as possible to either Baptist or the one in Greensboro, whichever could get her in quicker. In the meantime, we are to check her blood sugar every night before bed, and every night in the middle of the night until we have another episode.

We cringed at the thought of all of this, and felt terrible for all the pokes Ellison would be enduring, but didn't freak out like we did last year. After all, not quite sure what's going on right now. The first few nights of checking her blood sugars, she was in an okay range. Nothing out of the ordinary really. Well, starting last night, her levels are slowly creeping up, and have gone a little out of the range were were told to watch for last year. We've both been scouring the internet, of course, which isn't always good or helpful, but from a nursing standpoint the endocrine system is so very complicated. So I don't feel like I understand enough when my own child is going through this. Jonathan and I are starting to feel fried slowly over time here. To complicate things, Ellison has not been sleeping well the last 1 1/2 weeks. She's up anywhere from one to several times a night, for no reason at all, is completely restless trying to get back to sleep. (This, too, can be related to a blood sugar problem). We're having to wake her up (not easy to keep someone asleep when you poke them) if she hasn't already gotten up on her own, and then we have a hard time going back to sleep worrying about the result we just got and if it's normal, or if it's a little too borderline, or oh my gosh, that's out of range, but it depends on which source or scale you're using, and the difference between fasting versus post-prandial versus random, and did I write down accurately when she really last ate?, and what time should I have checked it - at midnight, or 2 am, or 4am, or when?, what time would be the best time in a 12-hr period to catch something?... She's been increasingly cranky, sassy, and irritable over the last 3-4 weeks. Is it her age, or is it blood sugar issues?... Are my hormones a little too revved up? How am I going to manage stress over the wellbeing of TWO children? I'm worried about Ellison's health problems right now on top of trying to determine whether or not it will be the best decision to go ahead with 17-P injections with this pregnancy as the doctor suggested. I want what's best for my unborn baby, too - how do I make that decision? I just keep praying for clarity - for God to show me the way...

We are fried. We all need a good night's sleep. I know poor sleep is normal with newborns and such, but this feels different. It's always at the top of our brains, even when trying to sleep. We need answers. What's happening with our baby girl? What's going on in her sweet little body? Is it nothing? Is it simply hypoglycemia (not likely now)? Is it diabetes? Is it a pancreatic tumor? Is it some bizarre metabolic disorder? Am I just freaking the hell out?!

We see a pediatric endocrinologist at Baptist next month after we get back from Michigan. So are we just supposed to keep up this crappy glucose testing schedule until then? We know we are supposed to go to Brenner's ED for any high blood sugars, but what about this in-between limbo junk? Tonight as we layed with Ellison trying to get her to relax so she could fall asleep (she's so off), I was rubbing her back, and the tears just started running down the side of my face. God has given such grace to his little babe - can you believe with all of the numerous pokes we've done to this girl over the last 5 days, from waking her to it in the middle of a dead sleep sometimes, she has NEVER ONCE let out a peep about it? NEVER ONCE cried, NEVER ONCE spunked. She just hands over her little fingers. If I have to check her during the day when it's been a little off, she helps me do it. She turns the machine on, she picks out which test strip, she puts it in the machine herself... What a brave, big girl... I thank God so much for giving her that strength. I don't know of many 3 year olds that would have it. He seems to have given it to her abundantly right now.

Today I spoke with the diabetes nurse specialist that works with the endocrinology office we will be going to next month. Our heads were completely spinning with what her normal range should be right now, since we've heard about 50 different "normal" ranges. The nurse was so nice, and helpful, and wonderful to speak with. She said not to worry about fasting vs. non-fasting. She said simply do random ones, and that anything above 126 would be considered high. Well, we hit up to 138 today, and they seem to be climbing ever so slightly every day. Needless to say, it's crushing our spirits some. I asked her what time we should be checking her levels during the night. Because kids release growth hormone at night, the best time they usually tell parents to check is between 2-4am. She couldn't believe we have to do this every night on a little 3 year old, but understood why we were told that - how on earth would we potentially catch one of her morning hypoglycemic episodes to see if it's tied to a hyperglycemic episode during the night? She said, you know what, if you just happen to accidentally sleep through it one night, don't feel guilty about it. So tonight, as we layed there with our Little Squirrel, and the tears were flowing and I was praying over her little body, I just prayed that God would wrap her in His loving arms tonight and give her such a good restful sleep tonight. We're not going to wake her up tonight. If she happens to wake up, we'll check her, but we're just praying for a solid sleep for her for once. We all need to reset ourselves. Just one night. Just one night to not wake up and worry, and wake her up and worry, and fight to get her back to sleep, then fight to get ourselves back to sleep by shutting off our minds. The only variable is whether or not she will actually stay asleep on her own for the first time in a couple weeks.

So there. I vented. I journaled. I cried some more. Again, I know our lives could be SO much worse. In the midst of all of this, I am completely praising God that this is our problem, and not something far worse. And no matter what, we are meditating on the fact that Ellison belongs to God, He loves her more than we even do, and He has a plan for her beautiful life, and no matter what obstacles may come, He works ALL things to good for those who believe. We are trusting Him. But it doesn't mean my heart isn't in anguish. But we are trusting...