We’ve successfully survived our first week at home.  It was a busy week for all of us.

We’ve had two pediatric appointments, 2 in home nursing care registrations, and 3 in home nursing visits.  We’ve also had the apnea monitors downloaded for our appointment next week, additional oxygen dropped off, and a host of other phone calls related to medication, appointments, paperwork, and programs.  I’m learning to speak a new language it seems.   I am working on a binder / filing system, and get a kick out of using my calendar pages for appointments.  Yep, I’m still nerdy.

Nurse Visit

Nurse Visit

Palliative Care Nurse

Palliative Care Nurse

We have had FANTASTIC help with meals.  Special thanks to Gateway, St Marks, neighbors and our friends from Marathon.  You’ve kept us well fed during a time where I sometimes forget to take care of myself.   I can’t begin to tell you how much that has helped us out.   If you want to continue for the next 40 years, I will let you.  So will K…

Cool Whip First!

Cool Whip First!

In the meantime, we’re in an adjustment period.

K has adjusted surprisingly well.  I say “surprisingly” because he was starting to have a really hard time.  He was starting to misbehave at home and at school, and was clearly out of sorts with the whole “mommy will be back soon” routine.   I was concerned bringing the babies home might make it worse.  Instead, he is now behaving better, sleeping better, and even eating better.  He may be happier than any of us that we’re all together again.  He is a great caretaker for the babies.  He considers it his job to keep their swings swinging when they are in them.  He also helps throw things away, retrieve things, and is the official “kisser of foreheads”.  When they cry, he tells them “it’s ok, there’s nothing to be scared of”.   🙂  He is not quiet, but they don’t seem to mind.  K is overall gentle with them, and has managed to leave all of the new cords and buttons alone.  We are so proud of him.

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Movie Night and "TV tray"

Movie Night and “TV tray”

Nana (my mom) has been here all week to help us settle in to a routine.  She has washed roughly 300 bottles and pump parts, and helped with easily 15 loads of laundry.  I wish that was an exaggeration. If not for her, I wouldn’t have been able to fit in the only 3 naps I’ve managed, and would have had more stress and running during the day.  Extra hands for the babies let me work on the “stuff” from the first paragraph, and extra hands for dishes and laundry let me use my free time with the babies.   THANKS NANA!

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Nana at work

Nana at work

The babies are adjusting too.  We use bassinets in our bedroom at night, and a tank for N’s oxygen.  During the day, we hook them up in the living room, and N is on a concentrator.  They enjoy their swings very much, and get some time to stretch on the floor and snuggle together too.  They prefer being cuddled.  They eat 7-8 times per day, and mostly rest in between.  Medications are twice per day.  Diapers changes are 140 times per day.  🙂 They each occasionally have brief alert times as well, so we are always thrilled to see their sweet little eyes.  (I think they are turning blue).

N

N

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L

L

(For you Nan/Brittney)…

L (clearly a true UK fan)

L (clearly a true UK fan)

N

N

I’m sleeping just enough to get through the next day, which has been sufficient for now.  Perhaps I’ll eventually crash, but hopefully they’ll start to eat larger amounts and sleep a little longer in between before that happens.

Overall, we are thrilled with how they are doing at home.   Day one with one baby somehow felt like a circus.  And one of their fussiest nights made this seem impossible.  Yet here we are, on a Saturday, with our helpers headed South.  And we’re doing just fine, remembering to eat lunch (at 2:00) and K and I had time for some play time outside.   Dishes are clean, laundry is caught up and I’m uploading photos.  Each day gets easier, and we’re almost sure we can do this.

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