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Category Archives: twins

Operation Homeward Bound: 3

05 Tuesday Nov 2013

Posted by Mama Laughs in Lissencephaly, twins, Uncategorized

≈ 7 Comments

Well…we’re still here.

L had a heart rate drop Sunday night.  Sometimes that puts a baby on a 5-7 day spell watch.  I asked mom to relay to them that we were interested in an at home monitor for L too.  They agreed, so while I was home I ended up picking up/being trained on two Apnea monitors and an oxygen system for N.

Perhaps because of the monitors, perhaps because of the mix of fear, love, and crazy in my eyes, they agreed they could both go home Wednesday as long as everything went well.

And today mostly went well.  They continue to eat far better than they are supposed to.  Mom and I knocked out the CPR course.  Morning rounds went well.

When we left L was tucked in to his car seat comfortably passing his 2 hour car seat test.  But I got a call later tonight saying he had another heart rate dip toward the end of the test…

The nurse wasn’t sure what this meant for L.  Often, they retest in 24 hours.  But we are already going home on a monitor, so it is hard to be more conservative than that, unless they keep him for a while.  We will just have to get the doctor’s opinion tomorrow morning.  They won’t be too surprised.  This morning they joked that they often refer to going home as “going to the zoo” because if the babies overhear the plan they act up.  🙂

N is taking his test as I type.  He is passing, but according to the nurse is fussy.

This was yet another reminder of their frailty.  But many preemies have these same issues and gain strength never to look back again.  There’s also a chance that L’s issues as of late are reflux related.  Reflux can be treated.

Two weeks ago I wouldn’t have guessed they would be tube free and gaining weight so well.  So the sky is the limit for two weeks from now as well.

In the meantime, we’ll cuddle as much as we can, and root these boys along.  If N ends up being discharged first, we’ll make that work somehow too.  Eventually…we will all be home.

I mean…at the zoo.

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Operation Homeward Bound: 2

03 Sunday Nov 2013

Posted by Mama Laughs in Lissencephaly, twins, Uncategorized

≈ 2 Comments

We’re still moving forward!

I am home for a bit, and Nana has taken over bedside duty.  Both boys ate well for her yesterday, and had good days.  (Visitors, baths, and cuddles!)  I don’t have a single photo…so that tells you how busy things have been!

These last few days have been busier than the first few days were.  Paperwork, training, final tests, appointment scheduling.  I’m so glad there are case managers to help keep everything moving in the right direction!

The hospital has mentioned Monday as a potential departure date, but there is so much on the agenda that I think that would be impossible.   BUT…Tuesday is a reasonable goal.

We have to meet with the Apnea monitor folks here at the house today for training, and to get the equipment we need to travel home with N.  The concentrator and oxygen should be at the house tomorrow for training and installation.  Then I’ll hit the road back to the hospital, and hopefully return home with the boys very soon!

HOME!

SOON!

Operation Homeward Bound – 1

31 Thursday Oct 2013

Posted by Mama Laughs in Lissencephaly, twins

≈ 6 Comments

Quick updates:

Both boys are still eating great!

L had a big temp drop.  I don’t think that will keep him from discharging but it is a reminder of how hard we will have to work to keep their temps on target.

N failed room air…again.  That one hurt.  He has had lots of chances, and seems close.  But this time he let his levels drop within 5 minutes.  We will have to start talking about oxygen at home.  The good news is that means he can get home sooner.  But I am bummed that he still needs it.

Nonetheless…operation homeward bound is on!

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