Surviving one of our nightmares

Another seizure. This time longer. 40 minutes. In those moments, especially when Eloise gets a sudden breather for a half second before the seizures return and freeze her little body over and over, it’s heartbreaking. It feels like pain is all there is, and pain is all there will ever be.

But I know tomorrow will come. And the next day. And the day after that. I don’t know when, but I do know that one of those days will be good again.

Yet as I watched her little body convulse in pain — helpless to do anything but be with her — it’s hard to remember that better times are surely coming.

That was part of my response yesterday to a friend who knows herself all too well how it feels to watch your rare daughter go through a tremendous amount of pain.

I wrote it right after Eloise’s most serious seizure of the day (yesterday she had 4, each increasingly longer and more severe).

Yet as I write now, it’s the midday the next day. That little tooth that started all this has broken through, Eloise’s body temperature is back to normal, and I already got one good meal in her this morning. So I’m feeling more optimistic.

But we just have no idea what’s to come. Is this another calm before the storm or is the worst over and done with?

There’s no way to know.

Feeling (mostly) grateful

Brian and I keep saying the same thing over and over, “I think we handled this pretty well.”

Now that Eloise and I are in the hospital, it feels like we’ve been training for a marathon since we got her diagnosis (which included the likelihood of seizures and many hospital stays) and finally our preparation was put to the test. And, though it isn’t over yet, we’ve done better than we expected.

– We thought to start filming her seizure immediately (in case health professionals needed to see later)

– We thought to call the emergency line after the seizure went on for over a minute (we learned that from training videos we watched months ago)

– We immediately started gathering stuff for a hospital stay — and Eloise’s things were mostly already gathered because I over prepare her diaper bag on a normal basis (like an extra set of clothes, diapers, a dishrag with dish soap, pump cleaning wipes, a storybook, and much more)

– We stayed calm because we had not only watched a few short training videos on seizures and what to do, but by then we had heard countless stories from other parents of kids with Eloise’s deletion and had mentally prepared ourselves for something like this to happen (many times the seizures were triggered by fever or pain and lasted over an hour, and afterwards the little one slept a long long time)

– Because I was in the NICU (intensiivravi) with Eloise when she was born, I also had a much better idea of what to expect in our hospital stay so I didn’t feel like I was in the dark (like now knowing nothing will happen on the weekend so we need to expect to stay here at least until Monday if not several more days)

– Just that day I’d decided to experiment with dropping to 4 pumps per day rather than 5 (which reduces the stress load and time spent cleaning pump parts and makes it a lot easier to handle Eloise alone)

– Trialing foods has been going so well with Eloise recently that we had even been planning to try “high risk” foods like gluten and cow’s milk and corn soon (which made the thought of eating hospital food — full of all kinds of things she has reacted to before — much less stressful because it just means moving up our “high risk” food trials with Eloise sooner)

– I ended up with a very friendly and kind roommate from a small town in Estonia who has not only been patient with my broken Estonian, but continues to make conversation (unusual in this country!) and help me figure out how things work here

The stay itself has — mostly — been great so far.

Many of the staff have tried to explain to me what’s been going on as it happens and what meds they are using and why (like giving her diazepam, a seizure rescue medication, or paracetamol, a fever reducer, or phenobarbital, a heavy duty medication meant to stop her severe seizure after nothing else worked). The doctors on call have been kind and empathetic and have used a mixture of Estonian and English to help me understand. They’ve even asked questions to try to help figure out why and when the seizures were triggered.

For whatever reason, the fact that her seizures have now been witnessed by 9 other people, 3 of them doctors makes me feel extremely grateful. Though this is obviously not something we would have wished to go through, we are at least in the best place for her seizures to happen, and to get immediate help.

We can do better next time

Brian said to me this morning, “I give us an A- for reaction in the moment and B- for preparedness.”

I’d agree.

We now have a whole list of items we need to have in a bag just in case we need to call an ambulance again. (Like an actual change of clothes for myself.) And a whole list of items we don’t need to bother bringing. (Baby food for her is provided at the hospital.)

We’ve decided we will do a full retro — where we go through the timeline of events and what we did well and what we could have done differently to make things easier — once this is all done. And that feels comforting. This time is already 100 times easier than our stay in January. Maybe our next stay can be even better.

Ultimately, though, it feels comforting to know we can and we will make it through this. Countless other families of kids like Eloise have had nearly these exact same experiences and have come out on the other side okay — even if the outcome wasn’t. We are so grateful they’ve let us in on parts of their own journey so we could be prepared.

After all, if they made it, we can too.

A revelation

A few weeks back, I bought a deck of cards called “Connect.” Many nights since then, Brian and I have pulled out a card and used it to start a conversation before we go to bed — something to help us not lose our relationship in the process of everything going on with Eloise.

Yesterday in the midst of all of the hospital stuff going on, I’d obviously completely forgotten about them. But Brian, sitting at home feeling helpless with nothing to do, did not forget. So he sent me a text with the card he wanted to discuss.

I thought about it awhile. (Eloise’s 40 minute seizure hadn’t happened yet.) And Brian and I were both surprised by my answer.

I think this sums up my thoughts well:

I’m struggling to think of the best time. Maybe when we arrived in Estonia and I stopped being mean to you. Or when we grieved losing our first baby, Ava together. Or when we grieved losing Eloise’s twin Leonid together. Or when you decided to stay home and it felt right.

Brian made an observation I hadn’t noticed.

I’m pretty sure this experience, with all the pain and trauma Eloise has and is going through, will do the same thing for us — draw us all nearer to one another.

In fact, already my appreciation of Brian has gone up, and so has his for me. And both agree we cherish our little Eloise and her good times even more — because there’s no promise we’ll always have them.

So. Even when one of our nightmares seems to have come true, it’s turning out not to be as scary as we’d thought it would be.

But, well, then again, we’re still in the hospital so who knows what will come.

For now, I’m feeling surrounded by your prayers and thoughts and love. We aren’t alone. And my American optimism says we’re gonna be okay.

(Besides, one huge gift that might come out of this is if Eloise has no negative reactions to these “high risk” foods then I can suddenly start eating like a regular human again. A girl can dream, right?)

Anything is possible.

Hug your loved ones tighter for us,

Mallory, Eloise, and Brian