The Eye of the Storm: October 2017

When Sophia was 3 days old there was a boy with the same condition that passed away. Through a mutual acquaintance we became friends. The first time I met my new friend she told me about this machine she had used to suction her son's airway. These kiddos aspirate often bc their suck swallow breathe reflex is not developed right.
No way, I thought. No way could I ever be strong enough to do that. That can't happen to us. Shouldn't a child that is so sick, that they need life-saving suctioning, live in a hospital? Please let Sophia be different. I'm never going to be comfortable suctioning her throat.
But I am. Not only do I have one of those machines now, I'm pretty decent at using it. She needs it often, but when she's sick she needs it constantly. A few days ago I voice drafted my morning so far.....and keep in mind this was only by 9:48 am.....

Sophia woke up in a pile of her own poo (diaper malfunction)
There's poop on her legs and feet and hands and back, normal for a blow out, but we get the added bonus of poo on all the cords coming off her. Her feeding tube in particular has extensions and ports and lots of places for poop to hide.
Disconnect her machines, Max is crawling across the bed headed towards the poop. Intercept.
Get her semi cleaned up and administer her morning meds.
Now begin the laundry.
She's coughing and gagging and sputtering and choking.
Every time I step away to get the sheets she starts up again.
Use the suction machine.
Put her back down and try to get the corners of the sheets up.
She's choking again...suction...
Get the sheets to the washer.
Choking. Suction.
Begin to clean mattress.
Choking. Suction.
Keep Max away from poop.
Choking. Suction.
Return to cleaning the mattress.
Choking. Suction.
Keep Max away from her feeding tubes.
Choking. Suction.
I want to bathe her to make sure her feeding tube site (as in the hole in her stomach) is clean from the blowout.
Max wants to get in too.
Get her undressed.
Her bag is running low on milk, grab some more.
Choking. Suction.
Shower Max before he can get in the bath with Sophie.
Choking and suctioning in between washing Max.
Get my bathing suit on.
She vomits on my bed now.
Laundry timer. (now some of you may be wondering why I would try to keep up on the laundry at a time like this. Well, times like this are often and if I don't keep up she won't have anything to sleep on or wear.)
Get in the bath. I could write a whole 'nother page on what it takes to bathe a 17 pound infant (essentially) with oxygen and feeding tubes coming off her, plus a toddler.
Get everyone out of the bath.
Clean my bed (I don't even bother trying to use fitted sheets anymore bc in between vomiting and suctioning it takes too long to change. I just throw flat sheets over the cleaned mattress because I only have mere seconds to change the bed).
Suction.
Get sheets.
Suction.
Spread sheets.
Suction.
My phone rings. It's insurance about her feeding tubes. I've been waiting for this call. I have to answer.
Talking on the phone and suctioning Sophia's throat, now there's some multi-tasking.
Nobody's dressed yet. Max is running around naked.
Get him a fruit cup, he'll have to eat breakfast naked.
More vomiting. More suctioning.
Lay her down and get oils and lotion.
Trying to find her clothes.
Choking and retching.
Tripping over cords to get to her.
Suction.
Cleared her airway and then I'm tripping over Max and his toys he brought in her room to be near us. He's playing naked on the floor btw.
Another alarm. More meds.
Get half way to the fridge and have to turn around and run back because she's retching again.
Suction. Try to get to the fridge again.
Oh did I mention I'm now doing this in a wet bathing suit with a robe over it? And on a sprained and swollen ankle?
Return the meds to the fridge.
Run back to suction her more.
Max informs me he dropped his fruit cup on the kitchen floor (yeah by the time I got to that it was dried to the floor). So, max is still naked but he needs to eat. Pop tarts and string cheese?
Get Sophie wrapped up and falling asleep in my arms and the laundry timer is going off again. If I lay her down she'll start choking. It's a race. Lay her down and try to move the laundry through before she throws up again. Successfull, this time.
She's asleep. Phew. What shall I do now? Where's the emergency now?
I'm wearing a wet bathing suit (btw I didn't GET to clean myself in the bath.....maybe tomorrow....) and Max is still naked but I need to take a breath.
I pull a box of candy from Grandma (that was supposed to be for the kids) out of the pantry and dive in.
Breathing slowing. Heart rate normalizing. Calming down.
Ugh. Max has to pee.
Clean out the training potty.
Back to the chocolate :-)
Insurance calls again :-(
Glance at the time and realize that this situation has been nonstop for almost two hours. ALL this emergency, is from a cold so slight, that the nurses at the hospital said the rest of us could have it and not even know (I'd hate to think what would happen if she got the flu).
Eat another "fun size" chocolate.
Think about getting Max dressed but I don't have the wherewithal yet.
Her machine beeps. Look at the camera. She's in her room choking on phlem and her oxygen is dropping. And I'm off...

I did eventually get Max dressed ;-) As I look back on days like this I wonder how I do it. I'm not boasting. Really, how did I do it? I believe the answer is angels. I believe that I have help. Somehow on this crazy morning....as stressful as it was....I somehow knew I had help. I was buoyed up. I was somehow cared for, when no one knew what was going on. But I did it. And I was okay. And it is experiences like this that make me believe, when it's my opportunity to watch the movie of my life, I will get the privilege of seeing who was there. What a joyous moment it will be when I can thank them! Now I don't consider myself an extraordinary person. I think we all get help. I believe that Heavenly Father cares about all of us and knows the details of our lives. I believe he sends extra angels, physical and unseen, to help us with our trials.

Trunk or treating and lighting the pumpkins today :-)

Max's ghost costume lasted one trunk before he wanted it off his head haha

It was a lovely day in the life of Sophia :-) She is feeling a lot better and we were ALL able to make it to the temple to meet my Step-Sister. She took our family pictures ;-) I think somewhere in there today we got THE picture. The big picture. The one to blow up and keep in our house forever. With Jonah going on his mission....and Sophia.....and Mason's 21 now...... It'll probably be you know, THE one :-) Also very exciting, this is the first photo shoot that we've got Sophia to smile big ;-) Which Jonah takes credit for, as he should ;-) I can't wait to see them!!! :-)

On the way home she's all tuckered out...