Two surgeries, one week, WHAT?

When we were hospitalized in December we had
found out that Dulce's hips were dislocated.
Off course right after we found out I was panicking
thinking I had done something that contributed to
the dislocation.
As the Doc was explaining how it was
simply due to Dulce not using her legs and not having
sufficient muscles to hold the hip in place
I was not able to shake the feeling that I
had not done everything that I could have to keep
them in place even though I had no idea this could
happen.
At the time we had many things to worry about
and the hip thing kind of had to go to the back
burner, but we knew we would have to deal with
this situation. A month later we tried to make an
appointment with an orthopedic surgeon. When we
got there and told them about the hip dislocation
to the front desk as we were trying to make and initial
appointment.
 The receptionist went and talked to the
Doc and he said that we should go to the emergency
room and get her hips relocated and then he would see
us. They were shocked we had come there with them
dislocated.
All of this time the receptionist was the only one who saw
us. At this exact moment I was so grateful for having the
knowledge to know that this might pertain to another child
but not my Dulce. If I had listened to them this could have
been a long waste of time. Because I knew the ER were
not going to do anything about this.
I told the receptionist that I was going to do no such thing
and we just needed an appointment and that the Doc needed
to see her to make that judgement. Because I knew if he just
took one look at her he would realize what he said was ridiculous
and does not help every child.
Well the Doc was quite concerned about us going home that
he had the receptionist squeeze us in right away.
I only waited 10 minutes and when he saw her he got it.
We did some ex-rays and found out that it had been dislocated for a
long long time. He then explained the surgery he would do
if she started to have pain which she was not having at the time.
The procedure sounded very painful and I was hoping we
would not have to do this any time soon.
We went home and just tried to not think about it.
We have to do this quite often because if it is not
happening at the time we have to not think of it
or we will go crazy just thinking about everything
that could and would happen.
So we try to deal with only a few things at a time.
I don't know if there is any right or wrong way to
deal with our trials, but we do the best we can.
By the way I think I should explain what I mean
by trial. I don't ever think of Dulce as a trial.
A trial to us is the things and illnesses that happen
to Dulce. I know she has such a harder time due to
the fact that SHE IS THE ONE who is going through
them. We are just outsiders just suffering right along with
her. Ok back to the story.
I knew I just needed to watch for signs of pain.
Well I noticed she got more uncomfortable during
diaper changes. I was told this might be the first sign.
Things progressed quickly after that. Dulce felt
pain all the time and it was hard to control with
all the meds we had available to us.
We scheduled the surgery for April 7.
I knew this was not going to be easy, but it needed
to happen. We just wanted that pain to go away.
It was horrible to watch her being in pain, but I knew
for a little while we were just switching one pain for
another, but deep down I knew it would be worth it.

We went on as usual and we happened to have
a follow up on my son's Doc to check on his kidney
because it was emptying very well ever since he was
born. We did not however expect that it had gotten
much worse and that he was going to need surgery
right away and it could not be put off because it
would cause damage to his kidney.
When I was told this I just smiled. I mean what
are the chances of both of your kids needing a surgery
around the same time.
I was not surprised due to us not having good luck ever.
When I was scheduling the surgery for Kellan they said
we would have to take the first date available which was
April 13. It was 6 days after Dulce's surgery.
Then I was really smiling just because I was shocked.
Oh wow two surgeries in one week, and the thing
that just baffled me was the fact that both were urgent
and there was nothing I could do about it.

My mom just happened to be with me when we found out
and she was panicking wondering how I was going to do
all of this. I was quite calm and just kept telling her everything
was going to be fine. Deep down I knew it would be and
this might actually be a blessing to be able to take care of
both at the same time.

A couple of days later I was just sitting on my couch
wondering how I was going to make this miracle happen.
I was praying in hopes of figuring out what I needed
to do or how I was going to be able to do all of this.

I knew that Dulce was going to need a lot of attention
even though I had no idea of what I would need to do
or any specifics on her post surgery care.
I was going into it blindly and that freaked me out.
One thing I knew though which is just the basics
of keeping track of meds, vitals, and keeping a very
close eye on her oxygen need.

I had no idea how Kellan was going to react to the surgery
but I knew he was probably going to be very clingy.
I prayed and prayed about what to do.
The answer was clear. To talk to the Relief Soceity.
I remember thinking I didn't want to bother anyone, but
a thought would come to me that I couldn't and didn't
have to be super woman and it was okay to ask for help.

I knew it was the right thing for me to do.
I received a great response and I felt much more confident
about facing this.
Usually when something big is about to happen to our family
I am so calm and I realize that there was no need to worry
too much because it had not happened yet and I had already
done everything I could have to prepare the best I could.

The relief soceity had come up with the best way to help
me during that time. Their idea was to have the ladies
from our ward come to my home for 4 hours a day and
they were going to work in shifts of 2 hours and they
would help with whatever I needed to do for the kids.

I have to take a little time and tell you how having those
wonderful ladies come to my home blessed my family.
Knowing that these particular ladies had volunteered
to come and cuddle Kellan, bathe Dulcinha, clean my
house, fold laundry, or just to chat. It meant the world
to me. In a time when we were going through something
so difficult to have these ladies come and support me daily
it was an amazing experience. If having to go through both
surgeries in one week was just to know and experience this service
from the women I can tell you it was all worth it. I have a new
found respect and understanding of the word "Service".
I feel I have gotten to know these ladies so much better.
This was a teaching experience for me and I am a better
person for it.

to be continued....

Advocate

Immediately after Dulce was born I felt how I truly

had no control of anything that was happening.

From even wanting to be in the same hospital with

her, to be able to go see her in the middle of the night.

All I got was five minutes with her and then she was gone.

I got to see her two days later. 

When I got to the NICU things got worse because

all the staff including Doctors, nurses, and charge nurses

were acting like Dulce was property of the hospital

and all I could do is watch and do what they said.

I was upset and confused and trying to figure out this

situation I was in and I had no idea what to do.

It was hard to have the nurses tell me I couldn't 

touch her or even talk to her. That hurt me deeply

because I was trying so hard to be there for her

and to bond. How could I do that when she didn't

know I was there? 

Then they told me I had to wear gloves when I touched

her, but some nurses weren't even using them. 

I started to get VERY mad.

I got sick of them always making decisions and not 

running anything by me. They just thought "I know best 

so just sign this paper and step back".

It felt like everything was going by so fast and that

I was loosing track of everything they were doing

to her. 

I had a strong feeling this was not how it was supposed to 

be. I really wanted to be involved and didn't know how.

One day my prayer was answered when a Social worker

came to Dulce's bedside to check on me and see how I

was doing. I had never met this lady before and I didn't 

want to talk to her and I didn't even know what she did.

She could tell I was just being cold to her and not wanting

to talk. Honestly I was talked out between nurses and 

Doctors giving me updates and telling me everything 

that was going wrong. So 90% of the time anyone 

talked to me it was always bad news. I think this 

day I had already had my fill. 

I'm grateful that before she left I asked her what she

could help me with. She then listed the help she

could provide and one of those things was to 

be advocates for parents. 

When I heard her say that a light bulb went on.

I then started to tell her about how I had no control

over what was happening to MY little girl. Nobody

was including me in anything when I WAS THE ONE

WHO GAVE BIRTH TO HER! It felt very unfair.

She helped me do a care conference where I would

get all of Dulce's Doctors and nurses and charge nurses

in a room and I would talk to them about what I didn't 

like that was happening and how I wanted to be involved

and how I wanted to have things explained to me and I 

set a few guidelines of how I wanted things to go.

For example ALL the nurses now had to use gloves,

I was going to be more involved during my visits

and now they had to run everything by me before

doing anything. 

It felt so good to finally speak up and let them know

how I expected to have things done and that I wasn't 

just going to step back and not get involved in

my daughters life.

Things started to get better right away.

Ever since then being Dulce's advocate has come
naturally to me and I feel grateful that I am not
scared and I don't hesitate to stand up for my
little girl. I believe it has changed our lives
forever.