Monday, January 25, 2016


We played tag about a month and a half ago in the front yard,
but most of the pictures turned out super blurry. So
here's a good one of Baker.
Last summer we signed the girls up for a running club.
I wasn't too happy about the price, but we committed and they had fun
during the practices.  We only went to one meet, but we didn't sign the
girls up for any competition, so they were just there for the group photo.
But during the season, they had a color run that the whole family was invited
to participate in.

 Here's how everyone looked before the race.
 There were tables set up to get yourself covered in chalk before the race started,
and it took some convincing of all the kids to actually do it.

 Baker and I waited halfway through the race for everyone to come by.
Here's how Daddy & Grayson showed up.
 Scout wouldn't smile after the race was over.
But she really had a great time.
She turned out to be an excellent runner.
I'd probably sign them up for it again this year if it wasn't such a
huge time sucker....

 We planned ahead and had some garbage bags ready for the car ride home.

Obviously I need to take more pictures of everyone, and upload some from my phone.

Thursday, January 21, 2016

More on Poppy

We've now had Poppy home with us for two whole months! 
And she hasn't had to be admitted for anything,
which is big cause for celebration, I think.
She has had a few setbacks, like needing a blood transfusion in
December, but it went well and we haven't noticed any complications.
And one of these days she is supposed to start weekly iron infusions
(iron through an IV) so she shouldn't need another transfusion, but
we are still waiting for the call that said everything is set and here's when
she needs to come in, but we haven't had that call yet.
It's pretty frustrating, because her iron count keeps dropping and if she doesn't get
an infusion in the next week, I think she'll need another blood transfusion.
Which we were really hoping to avoid.

We also have a new home care nurse.  I was sad to see the last one go - she
was great.  And my first experience with our new one was less than
stellar, but when she came yesterday, I liked her more.  So maybe we 
were both having a bit of an off day that first visit.
The home care nurse comes once a week to do a blood draw and
to change the dressing on Poppy's broviac line.
It's nice that I don't need to do that - I am willing to if we are told
by our insurance company or whoever makes that decision, and
I feel confident that I can do it if it was an emergency situation,
but I am very thankful that I don't have to for now.
It's nice to just be the one to keep Poppy preoccupied and be on
binky duty.  She is really good at keeping still and being
happy whenever she's had a home care visit, so I mainly just 
keep her arms away from her chest when needed & pop the binky back in.

She has also started physical therapy.  We have two different places helping her.
One is through the school district.  Because of her vision problems,
she qualifies for a vision teacher to come out twice a month and help
her learn things.  We've only had one visit, and it was mainly an 
introductory thing.  But her other PT is through the hospital.
She has an irregularly shaped head, so she qualifies to have some visits for a few months.
The goal is to help her with muscle control so she can be mobile
and have her head reshape so we can avoid needing a helmet.
That lady was great.  And Poppy tolerated the work very well.
Although she starts to cry anytime I start to put her in the positions
I was asked to work with her with - even before I do anything else, just getting
her ready.  So I still do it, but we are slowly building up.

We had a great Christmas break - and pretty much finished remodeling the kitchen.
I took some pictures, so hopefully soon I will get them up on here.
I LOVE it.  The kitchen feels so different and I feel really good when I go in there.
And I have more of a desire to keep it clean and nice.

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!!

Tuesday, November 3, 2015


Poppy wasn't able to come home, afterall.
She had several fits of unconsolable crying over the weekend,
one of which lasted for about 5 hours.  We weren't around for it & the 
nurses passed her back and forth among them, but nothing could help her.
They felt like she was in pain because of the way she was
acting when she was crying & the shrillness of the cry.
So we were happy to be told during rounds that they wanted her to stay longer
to try to see what could be done for her.
And we had been feeling like they were kind of pushing us out a little too soon, also.
They didn't have a solid feeding plan in place & we haven't yet been
told much about how to take care of her g-tube,
and she hasn't been gaining any weight since she's been transferred.
She is still hovering right around 6 pounds.
So as difficult as it is to have her still in the hospital, especially one that is 90
minutes away in good traffic (and using the carpool lane), we are
glad that she's getting the extra attention that she seems to need right now.

And her doctor called me tonight to say that she has a fever,
which if she was home would force us to the ER, so we are extra glad
that she's there.  Having a broviac line puts her at extra risk of 
major problems with any fever, so anytime that she has one in the future,
we will have to get to the ER as soon as possible and not leave until
several tests are run to make sure that things are ok.

Sunday, November 1, 2015

Tender Mercies

I have been neglecting this blog for a long time (at least two years). But I have been thinking of so many different posts for the past few weeks (and two years), and I finally decided it's time to get back on here.  Some of you probably know we added child #5 to our household
in September.  We sure love this girl!

She has had a super rough start in this world, and has a long, tough battle ahead of her.
But she's doing so well and has made many, many improvements.
And a lot of things have been going very right.
We are so thankful.

In 1 Nephi 1:20, Nephi talks about the 'tender mercies of the Lord'.  That phrase
has been on my mind a lot & I wanted to get on here and acknowledge some of them.

When I was 34 weeks along in this last pregnancy, I went into labor.  Since I have
braxton hicks contractions quite often, I wasn't sure if what I was feeling was
real or fake.  We decided to err on the side of caution and headed to the emergency room
that night.  On the way to the hospital, I realized that the contractions were
probably real & several hours later the doctors decided they were real & admitted me.
It was definitely a tender mercy that labor didn't start until that day, because once you
are 34 weeks, they won't try to stop labor.

It was also a tender mercy that the friend that I called to see if she could come over
while we headed to the hospital wasn't busy.  Her husband was off that day/night/next day
from work & she said she was available to stay all night if she was needed.  And she was.

The labor was hard and long.  And I've blocked out quite a lot of it from memory.
But I was able to get up and go to the bathroom several times, which was great.  
It was nice to not feel like I was chained to the bed.
I was also able to not choose to have an epidural.  I have had them before, but my recovery
time after the deliveries without an epidural have been so much better and faster.
And that's what I was hoping for (and was given) this time around.
I did opt for some strong medication (fentanyl) to take the edge off, 
which worked very nicely. 

An amazing thing about her coming early is that my in-laws were able to come
over on Saturday and take care of our kids at home until Wednesday.
They were able to because they had planned a camping trip for the weekend & my
husband happened to call them as they were getting all their things together.
Being the amazing parents they are, they changed their plans & came
over to help us out.  It was a huge help - we didn't have to worry at all about the kids,
my husband didn't have to feel like he was needed at home & at the hospital,
and we didn't have to ask our friends to sacrifice their whole weekend.
It was perfect timing.  Another tender mercy.

We knew to expect problems with this baby because my doctor had seen some things
that concerned him during my 20 week ultrasound.  So he referred me to a specialist
group, who diagnosed me with meconium peritonitis.  Which basically means
that for some reason the baby's bowels were dilated (too big) & the meconium
was likely leaking out into the abdomen.  Knowing this beforehand allowed us to choose
the right ER to go to - the one at the hospital that had a better NICU & a team of
surgeons that would be able to operate if we needed them to.  This was a tender
mercy because I was able to be in the same hospital & we also had some 
warning that there might be problems.

Our cutie girl was born around 4:30 am Saturday morning.
She weighed just over 4 pounds, which is great for 34 weeks.
We had a NICU team set up in the room waiting to see if she would need anything,
and as soon as she was born she was handed over to them.  They cleaned her up,
looked her over, stuck a tube down her throat to clean out her belly, and then let me hold her for
about 2 minutes. 
It was awkward to hold her because of where she was placed & I had my IV in that hand.  But it was
so nice.  She was awake and happy.  Then they took her to the NICU to see
what else needed to be done.

They did a contrast study (dye that shows up in an x-ray) & it showed that there were problems with 
the bowels.  So they sent her up to surgery.  It was a long wait.  I think
it was about three hours long.  Our surgeon was wonderful.
She ended up sewing the large intestine together at the top, removing some pieces of the small
intestine that weren't connected to anything (the body absorbed most of what was missing), and 
put in an ostomy from the duodenum.  This came out of Poppy's belly button.  She also
placed a g-tube to the stomach.
The next day, we agreed to let them put a PICC line in.   Since Poppy
didn't have a digestive system, she had to have all her nutrients through an IV.
This is called TPN (total parenteral nutrition).  And using a PICC line (basically
an IV that fits into a vein & can last for weeks at a time) enables her to be 'fed' without
the nurses putting in a new IV line every day or so.

It's now 7 weeks later.
Poppy has had two more surgeries, both in October.
The second surgery was to put in a broviac tube (this is an IV tube that goes into
an artery - hers is currently placed in a jugular vein - for the TPN), change the g-tube to a
better kind, and connect the small intestine to the stomach.  This surgery also went very well.
She only has 11cm of small intestine (the average newborn has 250cm).  And it's connected 
to the duodenum, which is much larger than the small intestine, so she can't eat much, or be given much through her g-tube.
The last surgery was because her broviac started leaking. Somehow it came out of the vein and 
the TPN wasn't getting to where it needed to be.  So the surgeon had to put in a new one.
But he was able to use the same jugular vein, which was wonderful.
Since TPN causes liver damage, she has had to have a lot of lab work done.
One of the main things they watch for is her bilirubin count.  She had jaundice initially
and was given phototherapy.  Which made for some great pictures.

After she was taken off the lights, her count was good for a little while.
And then it started to climb.  And then stayed high.  But it wasn't something
they could do much about - except feed her milk (which combats liver disease/high bili counts),
but she couldn't be fed milk because her stomach wasn't connected well. They gave her 
1mL of milk an hour, straight to the stomach.  Which helped a little, but not enough.

Her numbers were high enough that the doctors suggested she be moved to another
hospital that could provide a different type of TPN.  It's called omegaven.
It's fish oil based, rather than soy based like all other TPN, so it's not as hard on the liver.
But it's not approved by the FDA as a TPN substitute, so we had to move her to a
hospital that is using it in a research study.

So she was transferred up there last week.
And the first labs taken at that hospital showed her bili levels were down.
And they have continued to stay down.
So she's coming home tomorrow!
I'm really nervous about this, but excited also.

She will still be using TPN (we are learning how to hook her up to the pump),
and we have to be super careful with her (she's still less than 7 pounds).  And since
it's now the beginning of cold & flu season, she will probably only be going to
her weekly doctor appointments for the next few months.  

One last tender mercy that I need to mention is that my sister was able to
come right after my in-laws had to leave.  She stayed for
two weeks and did a lot of babysitting while we dealt with all of this.
And then my mom came up on October 9 & is still here.
This has been so wonderful.  She is doing a lot of stuff around the house for us
and she watches the boys every time we head to the hospital.
I know we have a lot of friends who would offer to do this, but
this enables them to have consistency and be at home like they
normally would.

I am so glad and thankful that she is a fighter.  She is strong and calm.
And I'm looking forward to getting to know her better as we are able to bring her home
and spend more time with her.

Wednesday, February 18, 2015

Bath Time

We try to have bath night three times a week.
It's really the most that I can handle.
Getting 4 kids in and out of the tub in a reasonable amount of time
(less than an hour) is tough, and I can't do it more
often than three times a week.
And some weeks it's even less.
My favorite idea of recent bath nights, however,
is bubble bath. I feel that it has two great
characteristics - the kids think it's the greatest
bath time invention ever & it automatically cleans half
of their bodies!
Win - win.

Monday, February 9, 2015

Book Blitz Results

How did the Book Blitz go in January?
Mine was pretty sad.
You might even say dismal.
I read a 2 whole books
and part of 2 others.
Sad times.
And now I'm in the middle of one for my book club and I'm
having a tough time with it.  I like the story,
and the other book I read by this author was really good and I guess I had
high expectations for this one, but it's tough.
But I'm not giving up because I find the story interesting.
But it's taking a while.  I might even need to renew it.
Which really only happens here for the kids' books and any self-help I might check out.