5/19/18: Signing Time!

The last post about Bennett talked about how awful the week had been with him (screaming for hours on end with nothing to help), but I wanted to update that because he has actually had a really really good few weeks since then. He is in such a cute stage. He wants to cuddle with anyone and everyone, but especially Olivia. He’s LOVING soft blankets (never showed an attachment to blankets before). He is smiley smiley if you work for it. His “cheeeese” is so cute I can’t even handle it. As far as his walking and talking go, he’s still in the same place if not a little bit regressed in the walking department. He can stand forever if he’s distracted, but he’s back to mostly taking a few falling steps or just crawling where he wants to go. It seems like a motivation issue more than anything, but who knows?

His talking seems to depend on the day. I can NOT figure out why some days he’s babbling and imitating up a storm and other days I can barely get an “aaahh” out of him. But on those great days he seems to be really trying to imitate! He’s just pretty bad at it, haha. He can do percussive sounds better than vowels and consonants combined. And he has pretty good pitch-matching abilities when he sings along to music. He’s also signing a few things consistently and seems to LOVE that he can communicate with us! We love it too. Right now he signs “more”, “open”, “food”, “milk”, want, “help”, “swing”, and “all done”. Most of those are really touch and go, and no one else would ever know what he’s doing with his hands, but we know what he’s doing and he has a few really consistent ones! Right now “swing” and “more” are the most consistent. Oh, and “open”, and “help”.

He's been on the same dose of Trileptal now for 3 months and 2 weeks and has been seizure free since we started it (longest streak yet!). We're hoping this isn't just a honeymoon period and we continue to see seizure control as well as developmental gains with no serious regressions. The side effects seem to be minimal and we love having a content, happy, stable Bennett!! It makes life about a million times easier than when we never know what mood we're going to wake up to.

We're grateful for the relatively good stretch we've had lately with him, we just wish we would see more progress mentally, emotionally, socially, and physically. He's way more emotionally attached to us than he's ever been, which is fantastic, but it's still hard to watch other kids his age and see how far behind he is without knowing if he'll ever catch up (or even move past this stage). Hopefully he continues to surprise us, though, and just keeps improving! We are loving our team with Early Intervention here in Utah. They've really helped us with communicating with him and getting him to engage more with us! It's such a blessing!

5/15/18: Hyperemesis Gravidarium Awareness Day

Olivia Jane Rackham. Born 2/8/18. <3

I know that this is supposed to be Bennett's SCN8A blog, but my therapist says I need to write about Olivia's pregnancy to help me process it, and today is Hyperemesis Gravidarium Awareness Day so my Facebook feed has been flooded with HG mamas doing their best to educate the world and be a little vulnerable in the hope that others like me will get more help in the future.

HG is basically morning sickness on steroids. But that doesn't even do it justice. It's more like morning sickness on steroids, on steroids, on steroids. You basically throw up from the moment you get pregnant to whenever your medical team is able to find you a management system that keeps it to a minimum, which for some women isn't until after delivery--sometimes days, sometimes months later. I was one of the "lucky ones" who found a miracle cocktail after a feeding tube helped get me semi-stable after hitting the lowest of the lows around 5 months with Olivia.

I was losing weight. I couldn't keep water down. I swear if one more person suggested I eat crackers or try ginger I was going to lose my mind and seriously injure someone. I couldn't take care of Bennett. I had to have someone take him every day for me for 2 months. I couldn't get out of bed most days. The stairs were an impossibility, which meant that some days I didn't leave the bedroom at all. I showered maybe once or twice a week. I was making twice-weekly trips to the hospital for IV injections of fluids just to stay alive essentially. I was on about 5 different medications trying to help with the endless vomiting. Not to mention the relentless nausea, which never really subsided, and still remains once in a while today. You get the idea.

Actually, no, you don't. You literally can't, unless you have experienced it yourself. My sister called me at some point to ask me what I "do" all day? I responded, ".....I literally stare. at. the. wall." Reading made me sick. Watching a show made me sick. Holding my phone made me sick. Sitting up made me sick. Listening to books made me sick. Bennett's cries made me sick. People told me to "get out, find distractions, go for a walk." That was laughable. I kept emesis bags in every single purse, car, room, drawer, etc. because if I ever had to go anywhere, it was an inevitability that I would need to vomit at some point.

I got to a point where I would eat what I was craving anyway just because I desperately wanted food to taste good, but no matter what I ate, it came back up. Nearly every time. I can't even count the number of times I called my younger sister from the kitchen sink throwing up begging her to come watch Bennett for me that day. It wasn't until after a month of this that I accepted the situation and set up full time child care for him.

I am still dealing with the effects of HG. 3 months later. I have a beautiful baby girl, and I love her and I'm grateful, but I struggled (and still struggle) to bond with her because of how traumatic the pregnancy was for me. I have so much guilt over how disengaged I had to be with Bennett during a time when he needed his mom. He was having seizures daily for over a month, and I was in the hospital with him throwing up in between holding his hand and explaining to the doctors what was happening with him. I missed his developmental delays because he was at other people's houses during the days. He was on Keppra longer than he should have been because I didn't have the energy to take him into the office to get him seen again by our then-neurologist. I could barely make it through phone calls with his doctors without crying because I was just so ridiculously exhausted and famished. No one understood. No one was willing to make allowances. We had to come in to the offices, and it was impossible for me. 

I have incredible guilt and shame over the fact that I was in so low of a place 2 months in that I wanted the pregnancy to end. I wanted it to be over. I honestly didn't think I would survive. I have guilt over the fact that Dave had to go in to work late and be home early every single day. And once he was home he was a full-time single dad to his son and caretaker to his completely dependent wife. And Bennett was NOT easy. He never slept through the night, and Dave took every single feeding. We both reached breaking points we didn't even know we had.

I have guilt over the fact that I never ever ever ever want to be pregnant again. I wish I felt like our family was complete and we were done, because I want to ensure that this never happens to me again. It literally does not feel worth it to me--which feels like the most terrible thing a mother could say. Of course having Olivia makes it all worth it logically, I just need more time to get there emotionally. And I don't think any amount of time is going to make me brave enough to want to be pregnant again.

Literally the moment Olivia was born, I had a full-blown panic attack. In the hospital room, before they had even stitched me up or put her on my chest for skin-to-skin. The tears just started flooding and I could barely breathe. Dave had to take Olivia for skin to skin because I couldn't handle her on me. I was having flashbacks of Bennett's first seizure, being stuck in my room, feeling trapped, living over the toilet for so many months, the fatigue, the resentment, the fear, the guilt. It was like everything hit me all at once and it was just too much.

Since that moment, I feel like all of those emotions have just been spread out through my post-partum period. I have suffered from severe depression and anxiety like I've never experienced before. The tiniest things are enough to completely paralyze me. I am overwhelmed by the prospect of every single day I have to be alone with the kids. I thought once I wasn't pregnant anymore I would be back to normal and feel like myself again, but that just hasn't been the case. Don't get me wrong, I feel about a million times better physically than I did during those 9 months, but I'm still reeling emotionally from the last year. I had to get in to therapy soon after the birth because I knew I was suffering from PTSD. I was waking with nightmares, having intrusive images and thoughts, having panic attacks (which I've never had before).

While a lot of these symptoms have gotten better, I'm still walking around not knowing when the next breakdown will be. I still go into a complete panic every time I feel even the tiniest bit of nausea. They tell me the more traumatic your pregnancy, the more likely you are to struggle with postpartum depression, so I guess I should have expected this. But I didn't. People talked about the emotional effects of HG lasting up to a year or more after their pregnancy, but I thought I was handling it all pretty well emotionally and would be able to bounce back quickly. I haven't. I struggle every single day to have enough energy to show up for my kids mentally and emotionally. I've become all too reliant on Daniel Tiger to entertain Bennett. I have so much guilt about the way I'm not bonding with Olivia like I want to. I have so much guilt about so many things, it's honestly overwhelming to even think about.

Maybe this is all TMI and too personal to share publicly on the internet, and I apologize if it is, but I feel compelled to share the reality of the devastation HG causes on not only the mom and baby, but on the partners and kids and families as well. Dave and I's moms had to come for weeks at a time just to help us function when it got to be too much for us.

The only way we got through this hell that was my pregnancy was because of the support of our parents, our neighbors, our ward, and friends who continually reached out to me and offered emotional support. There were plenty of people who dropped out of our lives or said stupid things that made me want to punch them in the face because they added to my guilt, but luckily, we had enough support that we were able to push through the pregnancy without feeling completely destroyed by the end.

I'm sharing this because the next time someone tells you they're dealing with severe morning sickness or Hyperemesis Gravidarium, please pleeeeease do NOT tell them about the time you threw up for a few months during your first trimester, please don't try to normalize their experience by telling them "pregnancy is tough", please don't offer suggestions like crackers or ginger--trust me, they've tried them, please don't ask if they've tried Zofran or Unisom--they have, please please do everything in your power to help support them and relieve their guilt rather than add to it. I can't even tell you how low I got when someone said something to me about how absent I was with Bennett and how he needed his mom and was probably struggling because I wasn't taking care of him like I should have been. I can't tell you how frustrating it was for people to talk to me about how much they hated throwing up like 10 TIMES during their pregnancy. It was so invalidating and made me feel completely alone in a time when I needed nothing more than to feel like I wasn't invisible. Like people could see me. See my struggle. Like I hadn't been forgotten, even though I was stuck up in my room unable to interact with anyone for months.

It's not really fair to expect that people will support you in exactly the way you need all the time, and I honestly don't want to minimize how difficult pregnancy is on most people even without Hyperemesis--I just hope for a little more understanding, a little more educating ourselves on this awful condition, and a little more support all around. If I can help even one mom in the future who suffers from this, then it would be worth it. Thanks for reading this if you got to this point--it means the world to not only me, but HG warriors everywhere. <3

5/2/18: Progress Update and CBD

This past month has been ROUGH with Bennett. PartiLly I’m sure because Olivia is here and he’s realizing for the first time that my attention is split and she’s not going away. But partially we think it’s also teething, not feeling great, medication adjustments (?), and who knows what else.

We got so desperate we actually put him back on the Zonegran for about a week, but didn’t notice a change really so we took him off of it again. His appetite has gone down this month (back to mostly just eating pouches and yogurt, not doing great on solid table food), his sleep has been alright, but he’s just sleeping less overall, hisbwalking hasn’t changed, and he’s picked up a few signs, but gets them confused a lot.

We decided to put him back on the CBD a few weeks ago and started to see more progress for a bit in his language and movement, and I still think we’re seeinf the benefits (won’t be going off again anytime soon), but it sort of plateaued.

There was a stretch of days last week where Bennett literally screamed (and I mean scream) for about 4-6 hours per day. It was very...trying. Apparently these kids sometimes just feel pain at a ridiculously intense level—to the point where some doctors hve given the parents morphing to get their kids through those bad days. Even though they don’t know what causes the screaming necessarily.

One day it just sort of stopped so we have no idea what happened. My guess is it was probably mostly teething or something, but things have been more stable since then. Still not awesome though. He’s just overall pretty fussy. Luckily seizure control has stayed good on just 2 mL of Trileptal 2x/day!