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.