Little Ladybug Hugs

I can’t believe it has been a week since my ladybug has come home from her most recent stay at the hospital. For some reason I was thinking that the transition for both ladybug and I would be a little rough. But, to my surprise, on Monday when I returned to work I jumped right in and felt like I hadn’t even left. My little princess has settled in nicely as well. I’m even finding the bedtime routine a little easier.  Mind you last night at around 03:15 I woke up to loud joy filled giggles. It even took a couple of minutes because I started dreaming that ladybug was in a cute little swing and giggling. Eventually I realized it wasn’t a dream – stumbled out of bed, only to find my princess WIDE AWAKE kicking up a storm, giggling, and making the most wonderful cooing sounds. Even with a diaper change and snuggles there was no calming her down.

Knowing that I had to be up for work in a few hours I opted to put her back in the crib turn on her musical fish tank, ladybug star projector, and tried to get a bit of sleep. Eventually around 05:30 miss ladybug settled down and finally fell back to sleep.

Aside from being a little more sluggish than usual, the lack of sleep didn’t really bother me today. After all it could have been much worse – she could have been up for those hours screaming like she was 2 weeks ago.

When I returned home from work today, I walked over to the bouncy chair, picked up my sweet ladybug and she looked up at me and started talking (more like cooing – but to us it’s talking). Then she started putting more umph into the end of her sounds. Ladybug Chatter 101 – this usually means she wants her soother. I looked down at her and said “hi buggy – do you want your soosie?” She then went quiet, looked up toward me and opened her mouth.

I asked my princess a question and she understood me.

To those who aren’t familiar with our sweet ladybug’s journey thus far it may seem a bit odd that I’m beyond thrilled for this milestone. You see, up until recently we weren’t sure what her hearing ability was (it’s all good), and her vision as of now is quite limited. We know she can see light, and has just started tracking a silver pom-pom that reflects the light, as well as a small globe that lights up and spins really fast. Neurologically at this point everything is a mystery.

So for her to hear me, understand what I’m saying, and open her mouth was a very big deal.

There are no words to describe the way I felt at that very moment. My heart warmed, my eyes filled with tears, and that hope that I hold so dearly for her has come through. It truly was a magical moment, and I know they are only going to get bigger and better now that we’re back into the swing of things.

These past few weeks have been a blur – so many tests, so many questions, and even more unknowns. In the first couple days ladybug was nearly whisked off for surgery for signs of pneumatosis intestinalis . (air within the wall of the small or large intestine which could cause perforation) No one knew how it happened, or if it could happen again. Luckily the cocktail of antibiotics worked, surgery was no longer needed, and  feeds were slowly reintroduced.

The next concern was possible seizures; one doctor said she had no doubt – it is absolutely epilepsy and we would begin treatment the following day. The following day a new doctor started the rotation and wasn’t so sure. He decided that he wanted a new Video EEG done to compare with the one we had this past October. Which makes sense. An order was put in for a video EEG to be done urgently. Herein lies the issue – the children’s hospital only has one video EEG machine, is short-staffed, and overbooked, so urgent meant a 1 year wait. Aside from being outraged that my daughter who was obviously having seizures was once again unable to get a much-needed test for a proper diagnosis, for the first time I felt at a loss. Should I push to be referred to Sick Kid’s hospital in Toronto or London? Thanks to Dr. Ajay Nayar, I didn’t have to. His compassion and persistence enabled us to get a regular EEG the next day.

The test couldn’t have run more smoothly. Ladybug did every single thing that concerned us the most, all of which was caught on the EEG. After 2 hours we headed back to the room and waited. The neurology resident came up and said that the team would like to come and speak to me about the results the following morning.

The next morning I waited – 09:00, then 09:30, then 10 still waiting, watching the clock, peeking into the hall to see if they might be coming. Finally at 10:30 The neuro convoy arrived. Dr. Nayar had asked me earlier to be paged so he could join the meeting and get a better idea of what was happening. He is the type of person whose mere presence puts you at ease. You see when you have all these doctors consisting of clerks, residents, and the big guru surrounding your daughter’s bed, it becomes quite overwhelming. I can’t begin to explain how reassuring it was to have Dr. Ajay Nayar there for us. He, like Dr. Brian Levy continuously went the extra mile to care for my daughter and exudes empathy, compassion and understanding.

I was told that ladybugs EEG had improved somewhat from October. My translation is that it had transitioned from a constant chaos to a more controlled chaos showing signs of maturation in the brain. There was definitely seizure activity noted all over her brain, but seemed to be more focused in the back.

I was given the option of putting her on an anti epileptic medication, the side effects could include but are not limited to – Kidney stones, liver failure, cognitive impairment, and the inability to regulate body temp.

However, what they couldn’t tell me was if this medication would be able to help my baby.  I couldn’t justify opening up Pandora’s box to a plethora of new and potentially deadly side effects for anything less than an absolute. I decided against starting her on these meds. Right now the seizures aren’t putting my ladybug in danger, and with no real proof that it would make a difference ,why take the chance.

We’ll be keeping a watchful eye on ladybug to see if anything changes, as for now, I am enjoying having my beautiful, increasingly happy baby girl home.