*I couldn’t read this back so there’s probably mistakes galore. And, sorry it’s so long.
Just typing this first sentence sends me into a panic from thinking about a terrifying moment one morning back in July. It’s been the main reason I had lost any interest in most things, including this blog. But things have been building inside my head and I need to be rid of them.
I’ve talked in the past about the hypoglycemic episodes we’ve had with my 6 year-old. Within 24 hours of her being born, she was rushed to the NICU for low blood sugar which was in its teens.
The hummingbird was taken off of medication within 2 months of being born and we thought that was the last of dealing with hypoglycemia.
Two years later, I went to get her up one morning and she was still sleeping, which was unusual. I woke her and while I was picking her up, she started twitching and crying while having spasms. She has never gone into a full-blown seizure though.
With each hypoglycemic episode she’s had over the years, there have been some where we could still treat her at home with honey and juice, and some where we would need to go to the emergency room. There were times where she would be released from the ER within 6-8 hours and other times when her blood sugar wouldn’t regulate and kept dropping to scary levels so she would have to be admitted for 1-2 weeks.
To this day, I worry 24/7 I worry about the possibility of her having a low blood sugar episode. Several of her episodes have been when she was sick but then there have been some episodes that have just come out of the blue.
The little bird has had so many tests and been to so many doctors but at the time, they didn’t seem to have many answers as to what was causing this. Also, the bird is small for her age so the specialists we’ve seen believed that there was another underlying issue but hadn’t been able to figure it out.
So, to be honest, I can feel like a wreck most days with the worry of whether or not she’s going to eat enough to keep her blood sugar up. She’s also very athletic and since she’s such a picky eater with not much of an appetite, that makes the worry and stress overwhelming at times.
We always make sure to have snacks with us wherever we go in case she may start showing signs of hypoglycemia. There have been times she had been so low upon waking up that we needed something much quicker to get the sugar into her because she can be very dazed and can’t follow simple instructions.
I usually dip my finger in honey and start wiping it on her lips and thankfully she has always responded to that by getting to where she can take it from a spoon. It’s probably only been a few minutes when dealing with these low blood sugar episodes but it feels like time stands still.
The bird didn’t have any severe episodes for a while and after we started seeing her most recent specialist, for the first time I’ve felt like I can ease up on the worry a tiny bit and I welcomed that.
When we go to her specialist, I cringe when I hear him say “failure to thrive”. It’s something we’ve been hearing over the years and I know it’s because of how small she is. She’s 6 but about the size of a 4 year-old. Hearing failure to thrive makes me fell like a failure as a parent even though I know we do our best. She’s just not a big eater.
Over the summer, my husband booked a cabin where we had stayed the previous year. It was really cool for us since living in Maine for the past few years, this was the first place we’ve lived where we’ve been here long enough to start traditions with our daughter.
We were also celebrating our 100th wedding anniversary in July so I was actually more excited than I was the previous year we went camping. And, yes. I think staying in a cabin is camping and that’s as close to “outdoorsy” as I’ll get.
I’m certain my kid was a fish in another life because she can swim for hours, which is what she and the husband did for the first few days.
We were all having a really great time, despite being a human mosquito buffet for 4 days and missing the comfort of my couch. My 6 year-old was eating pretty good and we were reconnecting as a family so I felt like I was finally able to unwind on our little vacation.
I promised her that we could sleep in the same bed the last few nights, which is a treat for her. I think it may have been my husband walking out of the bathroom that woke me up early that morning but within a few seconds, I felt the hummingbird twitching violently in the bed.
I took her in my arms to try and see if she was coherent but right away I saw that she was having a full-blown seizure. I want to throw up after typing that because all of the fear comes flooding back from that moment. I called to my husband to grab some honey but we found we didn’t have any. In fact, we only had things she would be able to drink, like juice, to help her get her blood sugar up but she was way past the point of being capable of drinking anything.
While I still had her in my arms, my husband rushed back with some strawberry jam that I started rubbing around her lips but she couldn’t even take that. That was the moment her eyes went into the back of her head and the hummingbird went limp. I feel terrible for even having this cross my mind at the time but I really thought the worst, I thought this was it. We had never experienced her in such a terrible state and I went in a state of shock, all while calling her name and trying to get her to come to.
She was throwing up before she lost consciousness so the jam I was able to get into her just came back up. The panic set in since she wasn’t responding and during this whole time, my husband was trying to get cell reception which was non-existent. The hummingbird started to show some signs of coming to… after what seemed like ages when in reality this episode was maybe about a few minutes. It’s strange how time seems to go in slow motion in an incident like this.
I was finally able to give her more strawberry jam on her lips and she was able to lick it off her lips but she still wasn’t responding to anything we said and in a daze. Understandably. The jam was all over the bed and the two of us were covered in it.
We knew we had to get her to the ER but since we were in the middle of nowhere and not familiar with the area, it made a very terrifying situation even worse. My husband found that the nearest hospital was over 45 minutes away and we had to rush the decision of what to do and decided it would be faster to take her to the hospital.
The hummingbird was still throwing up and in between, she started to accept the strawberry jam I was feeding her with my fingers. It was the car drive that lasted what felt like forever. We finally made it to the ER and thankfully, the little bird was in a much better state but my adrenaline was pumping like crazy and I still felt like I was going to throw up my heart.
They told us that her blood sugar was still pretty low at that point and we spent the next six hours there. This episode with her low blood sugar and seizure left my husband and I stunned but we had actually handled it more calmly than previous times with her hypoglycemia.
Reality hit me after a few hours while I was sitting beside my 6 year-old’s bedside. Seeing my child in that kind of medical emergency for the first time when it came to her seizure has honestly fucked me up. Feeling completely helpless while she had been lying in my arms and thinking the worst has guaranteed that my heart will never go back into my chest again.
I was asking the ER doctor all sorts of questions about seizures and having confirmation that there is absolutely nothing that you can do while someone has one made me angry. I felt that this is my child that I protect and love more than anything, yet I just have to let her ride it out was bullshit. I was irrationally angry about it for quite a while. It made the every day stress of dealing with her hypoglycemia shoot up with thoughts of not only dealing with her symptoms of low blood sugar but that now seizures were something that she might experience again.
When we went to see her specialist within the week, he told us that the chance of her having another seizure was high for the next two weeks and it was two weeks of hell. I didn’t want her to leave my sight. We are really lucky that she has the doctor she does because he is fantastic and has this soothing way about him. Although, after that visit, I was on edge.
To help the hummingbird’s blood sugar stay stable over the night, her doctor has us add a few tablespoons of uncooked cornstarch in yogurt that we give my daughter as a snack before bed. The cornstarch helps slows the digestion of what she eats and so far, she hasn’t had any episodes of hypoglycemia since. We’ve been back to her doctor for a second time and it seems like she’s doing much better with the addition of cornstarch. She’s even gaining a little more weight.
There have still been times since that we felt the need to check her blood sugar if she’s acting unusually tired and yes, that weird noise you may have heard a few weeks ago was probably my kid screaming at the top of her lungs. She still hates getting it checked and my heart breaks every time.
I’ve been teaching her more about nutrition and how important it is for everyone, especially for her because of these episodes she has. Things are sinking in for her that while candy is a treat, it’s so important to make healthier choices with food, like sliced avocado or cashews with craisans.
Every day I still feel like I’m teetering over the edge with the worry that this day may be the day her blood sugar takes a dive. It’s not easy when my anxiety already eats at me as it is. I just want to hug every parent out there who also has kids who have a health condition. And then sit down with a big glass of wine and a very loud ‘cheers’ because parenting isn’t easy.