Saturday, December 5, 2015

Updates on Poppy

She came home on November 16!!
It has been a great, tough, awesome, challenging,
turbulent, stressful, and blessed almost-three weeks!

On Sunday, November 15, my husband stayed overnight at 
the hospital.  It's a requirement to allow the nurses/drs
to see that you are capable of taking care of your child before they
send them home.  They both got about 3 hours of sleep.  I came up 
on Monday morning around 10 and then it was a long day
of waiting.  And no sleep.  Poppy didn't sleep for
longer than 20 minutes at a time, and those times were rare.
Needless to say, we were nervous to bring her home.  And talked about waiting
a few more days, but after talking it out, we decided that it was the best
thing to do it that day.
So then we kept waiting.  Since she's on TPN & isn't in the
hospital where someone on staff makes it up each day, we had to wait
for our home care company to make some, deliver it, teach us (3 hours) how to
manage it.  This was finally done around 9pm.  
And like it tends to, discharge took a while.  We left the hospital at 10 pm,
and got home at midnight.

We put Poppy in her crib and went straight to sleep.
Until she cried at 2:30.
I went in to take care of her and discovered that she had kicked the
gtube out of her stomach!!
And since we haven't yet been trained on how to put it back in,
we headed for the ER.
Luckily, we made it there quickly.
They were able to put the same one back in the hole before it started closing up too much.
The nurse that helped us could tell that we were tired, stressed, and super worried.
She kept telling us that we were doing a good job taking care of her on our own.
It may not have been very believable, but it was sure nice to hear.

For the rest of the time, it hasn't been too bad.
She typically sleeps all night, takes at least two long naps on most days,
and the medications/nutrient stuff isn't as scary as it seemed at first.
We are all still adjusting, and it's about to get even more difficult
because my mom is headed home next week.
It has been so great having her here to help out for 9 WHOLE WEEKS!!
We have never had anyone stay with us to help us out with
a new baby, and it is amazing!  Especially someone 
who will do all the laundry, cook most of the meals,
clean the house, babysit, do homework, and all kinds of stuff.
We even did some of my projects that have been sitting around.
And took 2 full car loads to the DI trailer.

When we took Poppy in for her first check-up on the Friday after discharge,
the dr couldn't believe that she was the same baby.
She was so calm and quiet.  I guess she just needed
her family.  And to be out of the hospital environment.
Another tender mercy.

So what's the diagnosis?
Well, there are many.
And it's probably not over yet.
She has Short Gut Syndrome, or Short Bowel Syndrome, depending
on who is talking.
She has a gtube coming out of her stomach.
She has a central line in a jugular vein for the TPN.
She is missing part of her corpus callosum (in the brain), has
several gray nodules on part of her brain, and also has
polymicrogyria in a section of her brain.
The results/effects of the brain diagnoses are tough to know right now.
It could mean that she has developmental delays, is prone to seizures,
or nothing.  Only time will tell.
She also has a problem with her optic nerve, but I can't ever remember
what that is until it's written or someone says it.
We are seeing an opthalmologist in February, so hopefully 
we will know more then.
We are also meeting with some more specialists in the future.

She is a great girl.
We love having her in our family.
And we are so excited to have her home!!