Recent Hospitalization

On October 8th Dulce started having seizures.

She was gray due to lack of oxygen and even

though I have seen her this way many times before

it is scary every time. 

Whenever she has one of these episodes I just

snap right into this mode of knowing exactly

what to do and at the right time. 

I get quite calm and know exactly what I can

and can't handle. At times it can be a little

confusing knowing exactly when I need the ambulance

because it can be a very fine line between me being

able to handle it and then being in serious danger

because I waited too long. 

So however you look at it Dulce's life is 

in my hands always. I pray everytime that 

I will be able to make the right call and that she will come

out of it ok. 

I had a strong feeling this particular day that she would have a seizure.

I didn't ignore it, I just knew it would happen sometime that day.

So I just went on about my day and waited. 

It was amazing how I didn't question it, I just was very calm

knowing that it would happen. 

I know the Lord strengthens me during these times.

When the first seizure happened it was like someone was shouting

in my head "You can do this". It was an extra boost of confidence.

I know the Lord is by my side every time Dulce has a seizure or when she 

stops breathing. I think that if I didn't feel his presence, I would 

not be able to do half of the things I do and have done in the past.

Dulce ended up having 5 serious seizures, and everyone of them she 

turned grey and I had to give mouth to mouth and a lot of oxygen. 

I was at a critical point where it was going to be too dangerous to 

take her to the hospital alone and I decided at that moment that if 

she had just one more bad seizure I was calling the ambulance. 

I prayed and prayed that she wouldn't have another. 

The Lord answered my prayer and we were able to sleep for a few hours. 

The next day I took her to PCMC and we were admitted.

I was in good spirits just being there because I knew we were at 

the right place at the right time. If anything went wrong

there is no other place I would rather be. 

Going to Primary's this time was different than any other

time I've ever been there. 

I was comforted just by being there. I had never really felt

that other than when Dulce was in the NICU. 

I felt at home. 

My home away from home. 

We only stayed one night and were able to find out

that she had an upper airway illness and due to the

stress of being sick Dulce had those seizures.

Now I can look back and realize how blessed I was.

How blessed and protected Dulce was because I allowed myself

to be an instrument in her life. By saving her every time. 

I will continue to save her forever. 

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. 

STRONGER

I hardly remember what kind of person I used to be.

I don't remember what I used to think about certain

things and my feelings and opinions. 

I don't remember what I used to feel strongly about.

I don't remember feeling completely devoted to any

one thing. 

I don't remember having such a strong love for someone 

that I knew the love alone would carry me through. 

I don't remember giving a disabled child a second glance.

All of that changed when I met my little Dulce.

It seems like my life before was without purpose.

It seems like I didn't begin living until she was born.

It changed my life completely. 

It changed the way I feel about life, dreams, wishes,

prayer, and blessings. 

I have more to say about everything I don't know if that's 

a good thing or bad, but I know I have been through so

much that there isn't something I feel I can't relate to. 

I have learned so much about being a mom, caregiver,

and most of all an advocate. 

What a huge blessing it has been to have my eyes 

opened about a child with disabilities and all that entails.

I now understand what perfect really means.

I feel like a completely different person, like I am 

finally fulfilling my purpose in life. 

I am so much stronger for having gone through

all the trials up unto this point.
I am very grateful for every moment happy or sad 

good or bad and for all the ups and downs. I know

it has brought me to this point and I couldn't be happier

to be STRONGER.

First hold

Dulce was three weeks old and still so fragile,

but by this time I had pretty much given up on

the idea of holding her in my arms ever.

I had to try and come to terms every time the

desire came to me. It felt so unfair.

I would watch as the other mothers got to hold

their babies and I so longed to have contact with

Dulce. The days seemed so long sometimes because

I could not have the embrace I was yearning for.

I kept wondering what she would feel like.

Would I feel her weight or a bunch of blankets

which is what I kept hearing from people.

It seemed like I was so aware all of a sudden of

mothers holding their babies and specially

pregnant women and I must say it was quite

annoying because I just wanted to ignore them,

but it seemed like they would appear out of nowhere.

I swear I could spot a prego a mile away.

I longed for the months I missed and it was also a way of

holding my baby, a way of protecting her, but it was not

ever going to happen.

One day the nurses started to mention doing some

skin to skin. I had heard all about this from day one

in the NICU, but the very words that followed were,

but she is too fragile still. So as I heard this I was

waiting for the but...

Instead they said if she was having a good day with

no events and if she seemed stable I could hold her.

The nurse had told me we could check every morning.

So that's what I did. I would call and see how her night

was and if today was the day.

After a few yes's that quickly turned into no's due to

some event of the day. My day had finally come!

Dulce was having a good day and I tried to prepare the

best I could like taking a shower right before my visit

and putting nice fresh clothes on. I also invited my mom

to come share in this special moment since Greg had to work.

My mom was also going to record our first embrace.

So I got to the hospital and I was so anxious and READY!

I put on a hospital gown and I sat in a rocking chair right

next to Dulce's isolette.

It was quite the ordeal to move Dulce because of all the

cords and off course the ventilator and Iv's.

The nurse finally handed Dulce to me and I just felt

like I was holding blankets because she was so light

and also because she was really bundled.

It was so nice to be so close to her.

The position wasn't quite right and I couldn't

adjust her due to the ventilator so I couldn't

explore her features like I wanted too.

She was face down on my chest.

While I was holding her the nurse was telling

me how some babies relax in their mother's

arms and that could potentially be dangerous.

Well a minute after she had told me this.

Dulce started to desat and she had a serious

apnea and bradycardic spell. The nurse had to try

and resuscitate Dulce right there in my arms

because it would take too long to move her since

they had pinned all tubing on my gown.

I sat there helpless trying not to move so I wouldn't

make things more difficult for the nurses.

So my little girl got on my lap for the very first time

and she relaxed. Too relaxed that it threatened her

life.

Meanwhile my mom was recording this from the

beginning and as things went downhill she didn't

know what to do so she kept recording.

The nurse just kept on working to get Dulce's

levels to come back up. I remember seeing

panic in the nurse's eyes and she kept repeating

"Come on Dulce, come on Dulce".

I knew what she was thinking. She was thinking

"please don't let this little girl die in her mom's arms

right after the first time she ever held her"

It was so clear as if she was saying it out loud.

I was worried, but calm. I had a feeling she was

not going to die so I held on to that and tried to

calm my breathing and heart rate to try and help

her in some way. Because I had heard that they will

try to mimic your breathing. That was the extent of

what I could do.

Finally Dulce stabilized and we were able to move her

to the isolette again. So that was my first time holding

my precious Dulce. Not at all what I expected.

My little girl almost died in my arms and I don't believe

I will ever be able to forget that experience.

No matter how scary that was I also LOVED the short

period I had her so close to me. I knew as well if something

bad had happened during that episode I was glad she was in

my arms where she belonged.

The other times I held Dulce she did just fine.

I tried to watch the video of the first time and

I was able to watch only a minute before I realized

I did not want to remember that in so much detail.

I was never able to watch the whole video.

Breakdown

Everyday I visited Dulce at the NICU

was difficult. She had so many complications

from the very first day until the end.

I got call from the hospital on a daily basis.

You would think that would be a good

thing, but they only called when there was

something bad happening. It was always

something like she needs another blood

transfusion or we tried to take her off the

breathing machines and she did horrible

so we had to put her back on.

Every time I was with Dulce it was like

most of the weight of my shoulders were

being lifted and I felt happy, truly happy

to be with her. It seemed like her spirit

would just wrap around me like a warm

blanket. Even going to the parents lounge

or the bathroom was hard because I wanted

to stay glued by her.

I made sure to never be upset when I was

at her bedside to make sure she didn't feel

my sadness. If I needed to cry I would go to

the parent's lounge. I had to hold in a lot of

feelings I had as the Doctors would tell me

something new was wrong with her.

So the breakdowns started from day one

pretty much. This is how it went I would

feel fine while I was with Dulce, but the

second I left the NICU this overpowering

sadness went over me and I would start

to realize that I would not see her for a

few hours and that killed me.

The drive home was the worst because

I would just breakdown and cry all

the way home. Most of the time I would

have to pull over because I couldn't see

the road anymore. It felt like I could not

be whole without being with Dulcinha.

When I was home I just felt like a portion

of myself was dead and I was not myself.

It changed me and the change was permanent.

Like sometimes I thought that kind of pain

could kill someone and nope I was still alive

and well. There were times I thought

"How can this much agony not kill me?"

I had to try to be happy for my family and

friends, but I never really shared my

true sadness and despair of what I was

going through. The couple of times I

tried it ended up making the person

start crying and honestly I could barely

comfort myself let alone comfort others.

So that didn't help me much and it just

aggravated me.

I also had to not share too much with my

hubbie too because he was going through

a lot we were handling it so differently.

So I kept most things to myself and always

tried to put a smile on my face even when I

felt like crying and being alone.

I knew only Dulcinha could make me feel

better so I decided after a little while

and because time would permit that I

stay with Dulce for 12 hours a day.

She was my comforter and I felt like

it was all I could do for her was to be

there.

NICU days....

As I entered the NICU for the very first

time I noticed it was so different from any

place I had ever been. I entered directly

into a room for us to scrub in. The staff

was very specific about how to wash our

hands and clean under our nails and not

to pick up our purses or coats after we

washed up.

I found it strange and did not

understand why we had to do all that...

now that makes me laugh because of how

picky I've become with hand washing and

keeping things clean for Dulce. I know it

has a lot to do with everything we learned there.

As I entered the main part of the NICU it

was full of isolettes with nurses and mothers

at the bedside. All isolettes had beautiful blankets

on top. The silence and peaceful setting they

were trying to achieve was very clear.

Dulce's isolette was located at very end of the room

the furthest from the door. Later I found out

that the closer you were to the door meant the

closest you were to leaving the NICU. So Dulce

was one of the most critical patients there at

the time.

When I saw Dulce I did not recognize her

she looked so different from our short

introduction we had the previous day.

She looked swollen from all the fluids

they were pumping into her.

I kept looking at Dulce thinking how I felt

no connection to her. She didn't feel

like she was mine. I thought there

would be an instant connection when

I saw her again, but It felt like I was

visiting a complete stranger.

I could not get passed the feeling that

she was ripped from me and there was

no bonding time when she was delivered.

There was no holding, kissing, and nursing.

The things I thought I would do when I had

my baby.

I struggled to connect with Dulce.

I wanted so badly to just hold her and kiss

her and find a way to bond, but as I sat next

to her all I could really do was to look at her.

The nurse had told me that we could not touch

her very much or talk to her because too much

stimulation would change the results of the

blood tests they did every couple of hours.

It was horrible to hear that I could not touch

my own little baby... It was hard to swallow

all they asked of me, but I understood and

did what they asked.

One very important thing I noticed was

how I could feel Dulce's spirit. It was so

strong and there was no mistake that

inside that little body was a fighter.

I had no idea how much of a fighter

she would be... how she would fight

for each breath, each day, each minute

of her NICU days. She taught me what

it is like to fight for your own life and

how precious life is.

To be continued......

Things got a tad harder

We have had two hospitalizations in the last two weeks

and it has been an eye opener of our current situation.

I was thinking we were doing great and that maybe we

needed to work on a few things, but as the days passed

and we talked to Doctors more and more and did a lot of

tests it was clear of what our life might be like.

So here is the conclusion of our hospital visit.

Dulce is choking on her saliva, she is also choking on food.

It is no longer safe for Dulce to eat by mouth.

Dulce could choke at any moment at which time she will

stop breathing and suffocate on her own saliva.

As you can imagine this complicates things. We have gone

over our options.... there were two.

One was a medication that has A LOT of side affects and if

it was not affective it would make it impossible to rescue

Dulce if she stopped breathing. The second was to do what

we have been doing until this point, but we would still be

able to rescue Dulce when she has the same episodes.

I feel grateful for a husband who shares the

same love, feelings and thoughts about our little girl because

this decision was not an easy one and I knew there

was only one decision I could live with.

I could not choose something that would make it

impossible to rescue my little girl and just have to

watch helpless while she passes away from oxygen deprivation.

I chose to always be able to rescue Dulce and fight for

her life as I do everyday. Even though this will change

things somewhat because now it is 24 hour care.

I have no idea how I will be capable of constantly being ready

at any second to face a life or death moment and being able

to have the right answer at that second. I now have to worry

about each and every time she swallows and question is she

aspirating? Is she going to choke? Will she get out of it this time?

If I ever thought my load was heavy... this takes it to a new level.

I'm devastated for what the future might hold.

No matter what I do it is never enough.

Very Special Pictures

The following pictures are from right

after Dulce's birth and the first time

I saw her and got to touch my little

angel. I have given a full description

of this encounter in my previous posts

and thought it would be nice to show

you the few photos we have of those

very special moments.

A few minutes after giving birth to Dulce. I was

anxiously waiting to meet my little girl.

Daddy's first good look at Dulce

Our first touch......

Touching her little foot. The first sign of life I was

able to notice because she wiggled her toes.

The most I saw of my little girl

Just trying to sort out this moment...

Our First Family Picture

Dulce being taken to LDS Hospital

Last but not least is the picture I carried

with me everyday to have her near me and so

I could see her anytime I wanted.

Dulce was about a week old in this pic.

It was the only thing I had of hers and

I treasured this so much.

A hard subject...

Every now and then sad thoughts

enter my mind and I can't make them

go away. Unfortunately they need to

play themselves out and I must face

them each time before I can move

on.

So today I will share my biggest

fear with you. The thing I fear on a

daily basis... the thing I fear every

time my little Dulce gets sick, every

time I am not with her, every time

I am left with my thoughts.

I am soooo scared to loose my little

girl. The feeling is so real that

it stops me from putting one foot

in front of the other. The only thing

that I find myself doing is cuddling

with her...

One thing you must understand is

that when you have seen your little

girl looking lifeless too many times

to count and at death's door. It

makes you wonder how you would

even be able to live after something

like that.

Our life might be difficult and full

of trials, but the thing to understand

is that Dulce is going through the

rough part and we are just suffering

right beside her. If she can find a

reason to smile among these difficult

times then I will try to find one too.

I have never met anyone so fragile

and yet strong in my life. I would like

to share the fact that I love my little

girl and all the hard days, months,

years we might have it will never

compare to when she is not with me.

I feel so privileged to be Dulce's mom.

I will always take care of her and show

how much I love my little girl. I would

never switch my trials for anyone else.

Dulce to me is my little life saver. She

saves me when she lets me love her.

FLASHBACK : My first glimpse of Dulce

October 14, 2010

Continuation from my first flashback.

Right after we picked a name for our little

girl. Greg decided to follow the docs and

see how our little girl was doing. During that

time I had noticed that Caroline my sister had

arrived right when Dulce was born. So there I

was with Caroline and my mom in the room just

waiting and trying to sort out what had just

happened.

Caroline went to the gift shop and bought a

disposable camera because we were not

prepared for this at all. I am so grateful she

did or else we would not have had any pictures

of this moment in our lives.

Greg was gone for a while and I started to have

some time to think of what should happen next.

So I went into "Numb Mode" it was the first of

many times I would have to go into this world

where I could deal with the situation on hand

and then deal with my feelings later.

So I decided to take this very special moment

and be happy that I just had my little girl and

I wanted to share it with my family and loved

ones. I started to make several phone calls.

The first was to my work to let them know I

would need my maternity leave now. The second

was to family members. I tried calling a few people,

but could not get a hold of most.

The person I remember talking to was Flavio my cousin.

The reason why I remembered this one in particular

was because I could tell he was surprised, but at the

same time shocked and he didn't know if he should be happy

for me or not. It was very confusing for all of us. That was

when I realized that this might confuse a lot of people

and I didn't even know how to explain it myself.

I also realized that people would be visiting me at the

hospital and I would have no baby to show. I could tell

it was going to be a hard day indeed.

My first visitors were my brother Davi and one of my

sister's friend Michelle. I am glad that they came

because it let me adjust to having visitors and to

figure out what I was going to say.

We took a few pictures and anxiously waited for them

to move me to my postpartum room where was told I would

get to see my little girl before she was transported to

LDS Hospital.

As I was getting wheeled out in the hallway the nurse

had told me that I would meet my baby in front of my

room. I really started to get nervous as we made the

slowest trip ever..... to meet my Dulce.

When we turned the corner and I saw her incubator I just

wanted to run to her. The nurse pushed my hospital bed

right next to Dulce. I cannot describe what I had felt seeing

her for the first time. So I will try to describe what I saw.

She was covered and surrounded by tubes. She was intubated,

had at least two IV's going. She had a little hat that was covering

most of her face to protect her eyes from the lights.

Dulce's skin was so thin that I could see all her veins. It was

paper thin. She looked so fragile I was scared to touch her, but

that would never stop me off course. So I asked the nurses if

I could touch my little Dulce. I first touched her little hand. It was sticky because it was not all the way developed. I must

say it made me sad because she was completely sedated and

she was showing no signs of being awake. She seemed lifeless.

This is not the first impression anyone should have about their

baby, but there it was.

So I go and touch her little tiny foot. I felt a roll of relief

that went through my whole body because she moved her

foot like it had tickled and she wiggled her toes and there

it was the sign of life I was looking for. I was looking for

anything, anything at all that would show me she was in

there somewhere. My little kicker.

I took my hands out of the incubator and just stared at her.

I was really trying to connect the fact that this was my

daughter. Caroline took several pictures during these

moments and I am so grateful she did. We even got our

first family picture together.

I had alerted the nurses that we needed to bless Dulce

before she left. So we wheeled her into my room so

Greg (hubbie) and Davi (my brother) could give her a

blessing. I knew this needed to be done and I can't

remember one word that was said. I was just glad

to have spent a few more seconds with her.

FLASHBACK: Wheelchair

Octorber 13, 2010

It was 2007 and Dulce was two years old.

She was just a little thing back then and we were trying to

live our lives as normally as we could. We had never thought

of adaptive equipment for our Dulce because she fit all of

the regular things you needed for a little girl, but we knew

pretty soon we would need something that would better

fit Dulce's needs.

Dulce's Occupational Therapist had brought up the fact that

it might be in our best interest to start looking into a wheelchair.

I had thought about this a couple of times and just kept trying

not to think about it and just enjoy our life the way it was.

At that time we were using a stroller for most of our needs

when we left the house. To go to places like, Doctor's

appointments and grocery stores, restaurants, and family

get together's. It was starting to get difficult to find strollers

and car seats that would recline far enough.

So without really thinking about it much I just met with

Dulce's rehab doctor and came up with the best kind of

wheelchair at which time the representative from

Praxair (medical supply store) came to our home to

measure Dulce and get all the necessary attachments

ordered.

I was told this process might take several months. So I

just relaxed and tried to go back to our routine of things

and had completely forgotten about this big BIG change

that was about to happen.

I received a phone call a few months later saying that

the wheelchair was ready and they needed to adjust

everything to her needs. So I set up an appointment and

we waited for our chair to arrive.

The day had finally come...

I was doing fine until they pulled up in front of our house.

I remember watching Courtney (Praxair rep) taking the

wheelchair out of the van. It seemed like a lifetime had

gone by while she was removing each piece from her car.

So much time in fact that so many thoughts were running

through my head. It had finally sunk in. My little girl

was going to NEED a wheelchair. Not just for today, a few

months, a few years, but FOREVER! I did not realize how

much it would hurt to finally understand. This too would

be a part of our lives.

I stood at the window just starring at Courtney....

I was so sad that there were no tears. I was dry.

Dry from all the other things I had cried about in

the past. I realized that there was nothing I could

do to change this.

I tried to think of the positive aspect of this change, but

nothing was of too much consolation.

I remember thinking maybe just maybe people

will stop asking if we needed a high chair when we went

to a restaurant! By the way they didn't. Most of the time

I just stare at them like "Are you kidding me???"

but I digress. I still remember that day just like it was

yesterday.

We have had that wheelchair now for 3 years and it has

been a blessing! Dulce has grown so much during this time

that there is no way that anything would fit her now and

be able to adapt to all her needs. So even though it was a

sad beginning I know it was a blessing in disguise because

I could not recognize the blessing inside this hot pink

wheelchair.

These past few days...

These past few days have been so hard

and they trully remind me how fragile

Dulcinha is. Dulce has pneumonia right

now and is having a hard time recovering

due to her Chronic Lung Disease.

Sunday night she started to desat or in

other words her oxygen levels were

going down. She required supplemental

oxygen for the first time in months and

this is usually not a good sign.

I sat and watched her until four' o clock

in the morning to make sure she would

be okay. I did everything in my power

to make her comfortable as well as

safe.

Throughout this whole time

I was thinking of what I needed to

pack and what equipment I would

need to bring as well as supplies in

case we were admitted. I knew

this could make a bad turn very fast.

I knew I might have to call the

paramedics if things got beyond my

control. I was so stressed and at

the same time worrying about

my little girl and what might be wrong.

I have recently learned how to listen to

her lungs and I was practicing to see

if any of the red flags would come up.

I must have listened to her for 10

minutes and just being glad I could

hear the oxygen moving through her

lungs. It was sort of a relief to hear

her breathing that I didn't want to

stop.

Everytime Dulce gets sick I go on

nurse mode. I don't have a license

or anything, but I have learned so

much over the years that I really

do feel like one most of the time.

I am constantly thinking of what I

need to do next and I think about

meds and charting what is going

on as well as her sats. All sorts of

nurse mumbo jumbo.

All these things reassure me that

I am doing the right thing. As

it has been proven to have

kept her alive until now.

So I stick to what I know and rely on

the Lord for the rest.

She did well that night and I finally

went to bed after she no longer needed

oxygen.

A few days later and a doc appt and

emergency room visit later she was

doing better. Dulce received a lot

of medications for her lungs to

maximize her breathing efforts.

She is a lot better and just so happy

to be home. You might not think

someone can smile in a bad cituation,

but you would be proven wrong by

Dulcinha everytime.

She amazes me how quickly her spirits

are lifted and how she can rise above

the problem and show her sweet disposition.

As I watch her recover from this it just

reminds me how she has been fighting

for her lifefrom day one and has never stopped.

She loves life and everytime we think

it's too much for such a little girl.

She shows us how strong her spirit is

and how she yearns to live.

My first flashback

One Flaw In Women Author Unknown By the time the Lord made woman, He was into his sixth day of working overtime. An angel appeared and said, "Why are you spending so much time on this one?" And the Lord answered, "Have you seen my spec sheet on her? She has to be completely washable, but not plastic, have over 200 movable parts, all replaceable and able to run on diet coke and leftovers, have a lap that can hold four children at one time, have a kiss that can cure anything from a scraped knee to a broken heart -and she will do everything with only two hands." The angel was astounded at the requirements. "Only two hands!? No way! And that's just on the standard model? That's too much work for one day. Wait until tomorrow to finish." But I won't," the Lord protested. "I am so close to finishing this creation that is so close to my own heart. She already heals herself when she is sick AND can work 18 hour days." The angel moved closer and touched the woman. "But you have made her so soft, Lord." "She is soft," the Lord agreed, "but I have also made her tough. You have no idea what she can endure or accomplish." "Will she be able to think?", asked the angel. The Lord replied, "Not only will she be able to think, she will be able to reason and negotiate." The angel then noticed something, and reaching out, touched the woman's cheek. "Oops, it looks like you have a leak in this model. I told you that you were trying to put too much into this one." "That's not a leak," the Lord corrected, "that's a tear!" "What's the tear for?" the angel asked. The Lord said, "The tear is her way of expressing her joy, her sorrow, her pain, her disappointment, her love, her loneliness, her grief and her pride." The angel was impressed. "You are a genius, Lord. You thought of everything! Woman is truly amazing." And she is! Women have strengths that amaze men. They bear hardships and they carry burdens, but they hold happiness, love and joy. They smile when they want to scream. They sing when they want to cry. They cry when they are happy and laugh when they are nervous. They fight for what they believe in. They stand up to injustice. They don't take "no" for an answer when they believe there is a better solution. They go without so their family can have. They go to the doctor with a frightened friend. They love unconditionally. They cry when their children excel and cheer when their friends get awards. They are happy when they hear about a birth or a wedding. Their hearts break when a friend dies. They grieve at the loss of a family member, yet they are strong when they think there is no strength left. They know that a hug and a kiss can heal a broken heart. Women come in all shapes, sizes and colors. They'll drive, fly, walk, run or e-mail you to show how much they care about you. The heart of a woman is what makes the world keep turning. They bring joy, hope and love. They have compassion and ideals. They give moral support to their family and friends. Women have vital things to say and everything to give. However, If There Is One Flaw In Women, It Is That They Forget Their Worth. October 7th 2010 While I was listening to the song from Christina Perri "Jar of Hearts" I ran into this poem and as I was reading and pondering about my own life experiences. I found myself so full of emotion and ready to have all my problems just pour out of me. It can be so hard to share all my thoughts and feelings since it is so up and down all the time. While my daughter lived in the NICU I was told it was going to be like a rollercoaster, but I had no idea my whole life from that day on would be a rollercoaster. I feel like I have so much to say, share, and give a of myself. so I have decided to share everything. Whether anyone reads this or not it is solely for my own gain to share with everyone and no one. I have tried to share before and I can tell by the listener's face that I have filled them with too much sadness. Therefore I stop so I won't overload anyone else, but how long must I go on without being able to share my true feelings about Dulcinha my little angel from heaven and our daily struggles to keep her healthy and ALIVE. So I want to write about the fight for her life. I want to write about each flash back of the first days with her along with current situations. My first flashback is when I was woken up with a pain I did not recognize It was August 29th 2005 at 7 AM. A day I will remember for the rest of my life. I was 27 weeks and 3 days gestation. With no complications to my pregnancy from day one and everything going perfect. I had no about this being something wrong with the baby. We were expecting a little girl. My first baby and it was such an exciting time for my husband and I. So as I lay in bed with pain my husband was laying next to me and wondered whether I should wake him up. I waited a few minutes to see if the pain would go away and trying to think what I could have done the night prior to have brought on this pain. After I woke my husband and called my mom I decided to go to the Cottonwood Hospital. When we arrived I was in quite bit of pain. We checked in and went to an examining room. All the nurses were calm and acted like this was no big deal so we tried to be calm also. One of the nurses hooked me up to a monitor to see if I was contracting. It showed that I was not and that she would page our doc to check me out. As Greg, my mom and I waited we thought it must not be a big deal and whatever it was it would be simple to fix. When my doc came in the room and checked my cervix. The shocked look on his face told us our worse fears had just come true. I could tell the doctor was trying to gather himself to try and explain what would happen. He told us at that time that I was dilated to 9 centimeters and the baby was coming and that they did not have the capacity care for our child at that hospital and they would have to page a team from LDS Hospital to come help. So we would have to wait for about 45 minutes. As the doc left the room I was still in shock and not sure how to feel. I remember looking at Greg with his head on my shoulder and his arms around me. I could tell he was devastated. I had no idea what to feel and I remember thinking "This is supposed to be my day, how can I be sad when this is my special moment" Those 45 minutes flew by as nurses ran all around me to prepare me for a emergency delivery. It seemed like everything was in slow motion. I couldn't even see Greg or my mom in the room because there were so many people surrounding me. Finally it was time to start pushing. I pushed exactly 3 times and my little girl had made her entrance into this world. All I saw was a grey little body that looked lifeless being whisked away. She was quickly placed on a warmer and docs and nurses swormed her and I couldn't see anything and they would not tell me what was going on. She was in my room for a few minutes while they resuscitated her. She was moved out of there just as fast as she came in it. When she left the room it felt like the plug of my emotions had just popped off. As my eyes filled with tears I just felt like my little girl, my little buddy, my little companion for six months was just ripped right from me and I didn't even see her face. All the months of wondering what she would look like. Would she have my nose? Would she look like her daddy? Would she love me? How could she have left already and I didn't even see what she looked like. My little girl... I realized we had not picked out a name and it was the only thing we could do. So I asked "Can I please name her Dulce after my mom?" his answer was "Only if I can pick her middle name Merinda after my favorite grandma." So there is was, we had named our little angel. A little angel had come down from Heaven and had not lost her tittle. Yesterday, today and tomorrow an angel forever.