Today was kind of a hard day for me.
Change is always hard, even when it's for the better.
We added two new ways of doing things with Ella in the past week. For one, she's wearing underwear now. And second, she's now doing all four of her feeding tube feeds during the day (instead of three during the day and one overnight).
The potty training was definitely initiated by us. We've been ready to be done with diapers for a long time, and Ella has been equally on board. And it's a good thing. Well, it WILL be a good thing, once we get used to it.
Switching Ella's feed schedule was initiated by a medical professional, and we further discussed it with Ella's neurologist and pulmonologist at Lurie Children's last week. We all came to the conclusion that if Ella does well without an overnight feed, it is actually safer for her.
Sleeping on a BiPap machine and doing a feed at the same time poses some risks. Some air from the BiPap can (and most likely does) get into Ella's belly, which can cause some discomfort. It can also cause her belly to become too full with the added formula, allowing for the possibility for her to throw up (which could easily lead to aspiration since she's lying down...very dangerous).
We thoroughly weighed the pros and cons of the overnight feed, and together we came to the decision of trying to go without it.
Ella hasn't had an overnight feed since last Thursday, and she's actually done quite well. She seems to be sleeping a little better (and it's one last thing we have to wake up for in the middle of the night!). She's getting used to having the extra volume during the day, because we still need to make sure she's getting all of the nutrition she needs.
But our days now feel very different.
Trying to fit four hour-long feeds in during the day has posed some challenges. We have to be very strict with when we give them, so that no two feeds are too close together. So we do one at 7:00 am, one at 11:00 am, one at 3:00 pm, and the last one at 7:00 pm.
This new schedule changes a lot of things.
It changes Ella's nap time. She used to take a nice long nap from 1:30 pm until 4:30 or even 5:00. Now I have to put her down at 12:30 and wake her up at 3:00 for her afternoon feed.
Our bedtime is different now. We didn't used to have a feed right before bed, so now we have to figure out a new time to do her Vest and Cough Assist treatments (they can't be during or right after a feed, because it could easily cause her to throw up).
And now I'm having to bring her feeds out and about with us when we didn't have to do it before.
And then there's the underwear. She's pretty much trained (but she did have a few accidents today at home...luckily not while we were out!).
But even though she's mostly trained, having Ella use the potty is really hard.
When Ella has an accident in her underwear, it's takes a good 5-10 minutes just to get her out of her old clothes and into new ones. Last week, it wasn't a big deal, having two parents around and no time commitments. But today was back to the reality of getting Ava and Henry to their separate schools on time, trying to run a couple errands, and being mindful of Ella's new feed schedule.
She also can't wear her TLSO brace on the potty because of the way she sits "in" the supportive potty seat...her TLSO digs uncomfortably into her legs. So taking it on and off every time is a pain since we have to lie her on the floor to do so.
And then handling Ella without her TLSO is just so hard. On so many levels. She is so floppy without it and she can hardly hold her head up. So it's hard physically. But even more, it's hard emotionally. Seeing my almost three-year-old daughter struggling so hard just to lift her head crushes my heart.
So today was my first day on my own during the day with these new changes. It was hard. I felt like I didn't have a second to breathe. But mostly, when I did find those few seconds of calm, all I could think about is how much all of this sucks. And how hard this life can be. And will be.
As Ella gets older and bigger, on the one hand, we are more used to SMA. But on the other hand, it just seems to get harder to get through each day, both physically and emotionally.
Normally I try to focus on the positives. But today has just been a hard day, so I guess I needed to vent.
I'm sure we'll get used to these new routines, just like we have with all of the other "new routines" and everything will feel fine again. Well, maybe not fine, but OK.
And I have to be ok with OK.
