Is it bad that I literally just had to count the Sundays since Len’s arrival? 9 weeks. NINE WEEKS. How is that even possible? It seems so much shorter and so much longer all at the same time. I think that statement will make the most sense to anyone who’s had a sick child and has lived in a hospital for any extended period of time. Your life is in fast forward AND slow mo all at the same time.
So – first blog post on the new site! Heyyy, girl, heyyyy! I wanted to wait until I had all of Lennyn’s story archived before I started posting but I won’t be getting to that until this week and as ya know, nothing in our life seems to go the way we planned it so HERE WE GO! We’re doing this!
Lennyn is becoming more baby like as each day goes on. It’s really refreshing to see. She gets fussier by the day when she’s hungry, or when you’re changing her diaper, or when she’s awake and bored in her bassinet. Her fuss isn’t really a cry. She sounds more like a grunting wildcat. Grunts and baby roars. She is communicating though. Her brain is registering discomfort and she’s being vocal about it and we couldn’t be more happier about that. She looks at you when you call her by turning her head, and this isn’t all the time, but it is becoming more prominent and it’s exciting.
My mom came over last night to watch Lennyn while I ran to the store quickly to pick up a few things for a family gathering we’re having here today. Seth has been picking up overtime to supplement my loss of income. Seth and I are so fortunate for all of her help. I wouldn’t ever be able to leave my house without her, especially with us isolating Lennyn. Aside from Seth and the 3 nurses we made life long relationships with, she is the only one I really trust to be with Lennyn alone. Her medical background puts us at ease. Thank GOD she was over last night. As I was unloading bags in the kitchen, my mom was feeding Lennyn with our new and approved feeding technique from our feeding therapist. A few minutes pass and I hear my mom calling Lennyn’s name over and over again. It was clear that something was wrong. I run through the house and over to them, and sure enough, Lennyn is in the middle of a full blown seizure. This is the first time I’ve ever seen her have one, or the first one was noticeable enough to be seen. Her body went limp, she had a blank stare and was staring off into space, completely non-responsive. She was stoic enough where it wasn’t apparent if she was even breathing. Thank God she was. Thank God her monitor was on (moms of newborns with or without special needs- seriously go get an owlet). Thank GOD it was a short lived episode. Horrific nonetheless. What was notable is how exhausted she was immediately following. You could tell that her episode took A LOT out of her. What was refreshing, was her stats never dropped. Her O2 level remained at 97 percent and her heart rate remained at 140. Not the slightest drop. I’m so happy my mom was here when that happened because I don’t think I would of handled it as well without her. Seriously trying to work in always being in full panic mode when something happens with her. It’s not conducive to anyone or anything.
With that being said, I am SO EAGER for her neuro appointments. Her neurosurgery appointment was bumped from Monday to Wednesday. It’s annoying but I do remind myself that there are other poor babies out there that Dr. Haridas needs to operate on. I was told not to measure her head when I was home or I’d drive myself crazy. Well, me being the rebel I am, I have been measuring her head. It hasn’t changed in size in the last 5 days so saying every prayer in the book that this indicates her surgery is holding up and her ventricles are not swelling. Her neurology appointment is on the 12th. Her brain surgeries, sepsis, and preemie treatment took precedence in the NICU. She’s had only had one seizure study that lasted only a few hours. Seth and I are so eager to get further testing done to see how often these seizures are happening and if our current dose of keppra needs to be tweaked.
Our other appointments for next week are feeding, ot, and PT. Busy week. Her care is a full time job.
In much lighter news, we have done away with the hospital feeding gear and are experimenting with real bottles, like a real baby, like a big girl. This morning we used a Dr. Browns and as you can see, Lennyn not only killed it, but she loved it ☺️ and is now napping away. Quite the sight and positive note to end this on.
Until next time, #lennynstrong.
And seriously moms and dads, get an owlet.