Brinkerhoff

I'm Still Looking Up

2012-02-13T15:02:00.000-08:00

Bradley had his MRI today.

He's a baby so they had to sedate him because of the noise the machine makes

and they needed him to hold VERY still.

I warned them about his veins.

And the anaesthesiologist said he had already had three pediatric appointments this morning.

He used a wide tourniquet.

He found some veins.

He poked them and poked them.

And I learned something this time that I didn't know!

When they give a patient an IV they know they have gotten a vein

when the blood flows out into the needle.

And Bradley's blood doesn't flow.

While he was poking him, Bradley was screaming, and I felt like leaving!

I have always left before when they have done crap to him.

But today I just kept thinking, "It's okay, this is just his earth stuff."

Hearing my Mom's voice in my head was a comfort.

And I also kept thinking "I cannot walk out on Bradley; I have to be here for him, and be strong!"

And even though he was crying, he didn't give us too much trouble for how much he was being poked.

Six pokes later, the anaesthesiologist calmly asked "His blood doesn't flow?"

I said "Yes"

So the anaesthesiologist said "lets try it" and hooked up some fluids.

The nurse said "IT'S DRIPPING!"

And we all looked down at his arm, which looked fine like the fluid was going into his vein.

We watched it for a minute longer and then the anaesthesiologist started the medication.

Within ten seconds Bradley calmed and closed his eyes like we knew the medicine would do.

The IV worked!

And on the way home I heard this song:

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am

I won't give up on us (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
(Jason Mraz)

As much as I wanted to, it was good I didn't give up and leave.

Bradley needs me for more than just cuddling and food!

I am his helper in this life,

and I'm still amazed God saw fit to give HIM to ME!
Sometimes I feel so unworthy!

Listen to the song here:
http://www.youtube.com/watch?v=TdN5GyTl8K0

The Hill At The Park

2012-02-10T18:13:00.000-08:00

Today the weather was B.E.A.U.T.I.F.U.L!

I love it when it's 70 degrees in February!

In order to rid ourselves of our winter funk, we went to the park.

We have a cement path at the park and the kids love to bring their scooters and bikes.

When we got there, there were tons of kids on the playground and my kids like their space,

so we dodged the playground and went straight to scooting.

This was Charlotte's first real time on the tyke bike and not in the stroller.

I was amazed at how well she could pedal.

We made our way around the park and then we got to the part of the path

where the path goes down a very steep hill.

I was prepped for what I anticipated happening to Charlotte.

Like the two other children before her, I thought she would get going down the hill

and vear off the path and crash into the grass.

But instead she surprised me.

She felt the bike gaining speed and she put out her feet to stop herself.

The girl has instincts.

And the fact that she didn't feel the speed and freak out and lose control, amazes me.

She did better than, I would have done, MY first time!

And through out the whole ordeal with Bradley I had nurses telling me that it was because

Bradley was born at home and overdue that he was having health problems.

And I knew they were wrong.

Because I had had Charlotte at home, overdue, and she was a brilliant, thriving child with instincts.

She was crawling and walking early.

She grew like crazy and ate less than Jacob had.

She has always been a child who performs well above her age and she just does that.

I certainly have had nothing to do with that.

(I'm a self proclaimed under-achiever!)

And that is PROOF that nothing that we do as Mothers or Fathers makes our children any one way.

Don't you think that if I could get Bradley to do the things Charlotte can, I would?

Bradley is helping me stop internalizing everything my children do.

He really does have a plan and he is helping me to understand mine better.

Helmet Head

2012-02-09T21:05:00.000-08:00

We left the orthotist with Bradley's new camo helmet today.

And he loved it so much, he fell asleep on the way home!

The orthotist said that the mother before me had been crying about

her poor baby having to wear a helmet to fix her daughter's head.

I can understand that.

But I'm not sad about the helmet at all.

I was sadder when he got his g-tube.

And before the orthotist we had an appointment to be fitted for his glasses.

And the doctor at that appointment said that Bradley had some odd proportions.

She said that his head was narrow

and from his ears to his eyes was short

and that even her newborn's glasses wouldn't fit him.

She bawked at the fact that he wasn't sitting up yet
and said that if he just lays and rolls all the time glasses,
flexable or not,

will not stay on his face.

And I told her I needed him to have them so that he could see me when we cuddle.

And she said I could never cuddle a baby or anyone who had glasses on.

She really made me angry.

And I don't think I'll be going back to her.

We will find someone else to fit Bradley for glasses.

Waste of my time.

He kept the helmet on for four hours today.

He started fussing toward the end.

Tomorrow will be longer.

And the next day will be at night too.

But I'm really happy about the helmet, it's adorable and I know it's going to make a difference.

Eye See

2012-02-06T21:46:00.000-08:00

Last week, my oldest had a reason to see a doctor.

She was running to the bathroom at school,

had turned to look behind her,

and ran into an opening door.

Our school was built in 1978 and the doors are huge and metal.

And the speed at which Maddy was running, created a force when she hit the door,

that sent her straight backwards to the ground and onto her bottom.

She also bumped the back of her head on a pole which supported an awning.

Quite the little accident.

And the person who was opening, the door Maddy ran into, was a 7 month pregnant teacher.

The poor teacher and Maddy were traumatized.

And luckily another congregation of teachers, found the disoriented two and lead them to the office.

The side of Maddy's face, near her eye had been scraped and it was stinging and bleeding.

She was wailing like she does.

The nurse looked at it and realized it was only scraped.

And they called me.

I basically ran to the school.

When I got there I yelled at the staff, pulled her under my wing and whisked her back home to safety.

As we drove home (okay, I didn't run) I was worrying about possible head injuries,

when Maddy spoke up and said "BUT MOM, I WANT TO GO TO ACTIVITY DAYS TONIGHT!"

She couldn't be too hurt if she was worried about a social activity.

When we got home, the MIL was here, and looked and said she thought Maddy was okay.

She did go to activity days that night, and mutual with me, too.

The next morning, to our surprise, the eye was swollen shut!

I called the school and told them she'd be going to the doctor.

We went in at 11am and the doctor said she was worried about a possible fracture.

She sent us to an imaging center for a CT scan.

Basically it's a doughnut that takes a 3D X-ray.

And they saw no fracture.

Through out the whole two day ordeal, I kept thinking about how if this had happened before Bradley

I would have been trippin' out!

But Bradley has given me so much perspective.

Yada, yada, yada...

And she is no longer wearing the eye patch I made her.

Really it was to cover her swollen-shut eye, and once the swelling went down,

she was back to her normal un-selfconcious, un-Quazimoto-like self.

Today Bradley had an eye appointment.

He's my only child who has ever seen an eye doctor.

And the opthamologist saw what I have been telling every specialist he goes to.

He saw that Bradley has vision, it is just not very exact and focused.

So we dilated his pupils to get a better look and found that

Bradley cannot see things that are close to him.

Things like my face when we are snuggling.

He has NEVER seen it clearly.

NEVER

And the doctor said Bradley can get glasses and wrote a prescription.

And we are going to see a doctor that fits infants for glasses later.

They are a rubber, wrap around type.

And I asked if Bradley would just wear them when he played and the opthamolgist said,

"NO, all the time."

And the opthamologist said that we wanted to give Bradley every possibility of developing

like a normal baby and "If we can fix his vision, why not fix it?"

I had NO CLUE babies could be tested to see what their vision prescriptions are.

And I cannot wait to put the glasses on him and see if he will FINALLY focus on my face.

I feel like Bradley has been looking through me.

And I cannot wait to see him, see me.

His Last Creation

2012-02-05T21:35:00.000-08:00

Today I taught young women's. The lesson was titled "Finding Joy Now."

I read the lesson and thought about how unsatisfied young women can be with their lives.

How unsatisfied they can feel about themselves and their bodies.

And I was thinking about everything that I have learned about my body these last few months.

How miraculous the body IS!

How wonderfully it functions and how beautiful it is!

And I've been thinking a lot about the creative process. And how things evolve.

How when you create you continue to improve upon original designs and plans.

And I've been thinking about my flowers and that they are beautiful,

BUT how they pale in comparison to Heavenly Father's flowers.

REALLY THEY ARE NOT EVEN CLOSE!

First of all my flowers don't reproduce. Or decompose and fertilize. Nor do they smell beautiful.

THEY ARE NOTHING CLOSE TO THE CREATORS FLOWERS, REALLY.

And ALL of his creations are so magnificent!

And do you know what he created last? That's right!

US!

And WOMEN were the very last of ALL of his creations.

We are the last beings he created!

We need to remember this when we criticize ourselves in the mirror and scrutinize our looks.

We are his most divine and most perfected creations.

WE are!

Intertwined Souls

2012-02-01T17:38:00.000-08:00

Tom and I had our yearly check-ups on Monday.

Neither of us have had one in our ten years of marriage.

But our insurance gives us cash toward our deductible and so,

this year, because of our medical bills, we went!

Tom and I were each asked about our medical histories.

No surgeries.

No diseases.

No allergies.

No, no, no, no, no.

Same answers we have always given.

And later I told Tom that Bradley will someday have a LONG history to give to his docs.

And Tom said "Yeah, THREE blood transfusions!"

It took me a second to remember the blood transfusions...

And then the memories spilled into my mind and I started to cry.

And Tom said "But he's okay now Mary!"

And I know he is.

And I'm kinda glad those memories are fading.

~~~~~~

Bradley went to the Endocrinologist today.

His labs weren't there yet.

And I apologized to the doc.

He said it was okay and asked how Bradley was doing.

I reported that he's only gained half a pound since November

and that we have now put him on 24 calorie formula.

I had learned how to mix 24 calories in the NICU out of the powder.

And his gastro has confirmed my memory and we are seeing if he'll gain on it.

I told him about Bradley's helmet and how the

PT and the orthotist said it will help him to hold up his head.

We talked about his meds.

He said when the labs are back if we need to up it, he will call in the script.

I told him that we are one MRI away from seeing the geneticist too.

As the endocrinologist was finishing his appointment he said,

"You are doing a good job!"

I burst into tears.

He hugged me.

Then he said, "Bradley was meant to be your Son."

I told him I KNEW that.

He said that Buddhist philosophy teaches that spirits

like Bradley did something in a former life that gave them these challenges.

And that he came to my family because of something I had done as well,

and that our souls were intertwined and that we were meant to be together in this life.

I told him that I knew all of that was true.

And I left thinking about our intertwined souls.

How Bradley is intertwined with SO MANY PEOPLE.

And how God told me that Bradley would do God's will.

And how Bradley IS doing God's will.

One answered prayer at a time.

His life has been weaved into all of ours and he is pulling us ALL closer to eachother.
And closer to God.

Diamond Making

2012-01-27T21:37:00.000-08:00

I was an actress in high school.

When you get on the stage, in front of the audience, your body shakes like crazy.

But if you channel that energy, into stage presence, you can captivate the audience.

I was quite a good actress. I still am.

I was in a play the spring before Bradley was conceived.

And I'm told I have amazing stage presence. That people notice me, even when I have lesser rolls.

I have honed this skill.

I know how to channel my energies.

I learned it in high school.

This year was FULL of stress for me.

I've had lots to worry about, and stress over, and to be nervous about.

But as in high school when the pressure has been put on me,

I've used that pressure for something good.

I've pushed that pressure out of me in another way.

IT HAS felt like diamond making.

There have been some pretty tough moments.

Moments where I felt like I was splitting in two.

BUT

I'm still here; and so is Bradley.

And I'm starting to feel like a diamond.

The hard things CAN become great things :)

Typical

2012-01-23T13:07:00.000-08:00

Today was physical therapy.

The big kids were out of school for staff development.

I could have left them with someone, but I figured

it was the perfect day for them to go and see what Bradley does.

After all, it is pediatric physical therapy, and there are toys and things for kids to do everywhere.

While we were waiting for Bradley's session,

two, three year old girls came in, from outside, by themselves.

They looked similar in age and they were for sure sisters.

About ten minutes later (yes, TEN!) their Mother came in

and the reason why she was so slow soon became very apparent.

She had a boy with her who was in a walker.

He was holding onto it and barely walking in the typical fashion.

VERY SLOWLY she opened the door and followed him in.

The minute he saw the toys, he let go of his walker and crawled over to them.

I asked if they were triplets and the Mother said "Yes!"

He was so cute.

He was a pure spirit.

I could feel it.

I have met SO MANY pure spirits these last four months!

The office has a window into the room in which they do occupational therapy.

Do you know what OT is?

I didn't before I had Bradley!

OT is therapy to teach kids the correct way to play.

Theoretically Bradley could do OT now because he is not reaching for toys.

And their OT room has swings that hang from the ceiling.

It looks pretty fun!

Jacob stood on a chair and peered into the OT room wishing he could ride on the swings.
Another little boy came next to Jacob and said "That's our OT room."
Jacob had no clue what the kid was talking about and so he said
"Yep, that's where kids who don't do things the right way go to work on it."
My heart skipped a beat.
But the child who should have been offended asked Jacob to play with him.
Their exchange was so innocent and lovely.

And I think we have finally found the right therapist for Bradley.

Her and Bradley click.

Today she told me that Bradley has a plan, and that she is here to make sure he lives that plan.

I loved that she called Bradley's life a "plan".

The longer I live with all of this, the more I understand that this IS, indeed, the plan.

And we talked about the helmet that he's getting.

She told me that sometimes typical kids are recommended for helmets,

that really don't need them,

and so their parents see little improvement,

and so there is a group of people who do not think helmets work.

But she thinks that his head is mishappen enough that we will see a difference.

She also thinks that when Bradley's head is more even it will help him to hold it up easier.

It's so heavy on the one side.

And she said that if he COULD hold up his head we could simply

sit him up and the flat spot would go away.

But he cannot hold it up. And so he NEEDS this helmet to keep him off his flat spot.

He is not typical.
And I have KNOWN he was not typical from the time I first saw him.

But I'm learning that I want to be more like Bradley.

Bradley is lifting me out of my typical life.

I feel that lift when I look at him.

When I study his non-typical ways.

And all of these pure spirits that, I would have otherwise never met, are having that effect on me.

They ARE the pure in heart.

And they do see God.

And I am lucky that I get to be with them.

Six Months Ago Today....

2012-01-20T17:24:00.000-08:00

Six months ago today,

I was laying in my bed fretting about the tiny baby I had had earlier that morning.

I had lost lots of blood after he was born.

I had passed out shortly after his birth.

And I was to lay flat on my back for 12 hours.

I was showing signs of anemia and Tom had made me cereal and scrambled eggs.

My mom had gotten here a few hours after noon.

When she got here, I was worried and dizzy and scared.

And Tom came up the stairs with Bradley and the bottle he had been eating and told me that he was a strong child and that he thought he just needed to gain weight.

And my Mom looked at him and told me the same.

And I got on Facebook and announced how tiny he was and EVERYONE told me that he was tiny but that they knew someone who had been tiny at birth and now they were 6'5" and 350lbs.

And I wasn't really worried about his size.

I was worried because he had come SO late and looked so emaciated.

And my Mothers intuition told me there was something wrong with his tiny body.

And now we know that calcium does more than just grow bones.

We know that calcium aids all muscle function and that when the body severely lacks calcium

EVERYTHING SHUTS DOWN!

We've learned a lot these last six months and I'm anxious to learn even more in the next.

Valiant

2012-01-18T23:28:00.000-08:00

This child has changed my life.

Look at his eyes in these pictures.

Look how deep his soul is.

And he is so strong to have made it through everything he has.

His eye contact has changed, and my feeling is, that there was some damage done in the hospital.

And it's no one's fault.

He is missing a gland in his thyroid that regulates his calcium.

And the lack of calcium almost killed him.

And the damage that was done was what God wanted to be done.

And now I'm dealing with that.

And I'm starting to feel at peace with it.

I'm starting to understand what a valiant spirit I was given!

And it is NOT sad!

IT IS GLORIOUS!

And that is worth every bit of inconvenience I HAVE AND WILL experience with his care.

I have always felt God's LOVE around Bradley.

ALWAYS!

I thought it would end when he got out of the hospital.

But IT DID NOT!

And Bradley brought that into my home.

ARE YOU JEALOUS?

YOU SHOULD BE!

Frisbee by the Pond

2012-01-15T22:16:00.000-08:00

Today, after church, Jacob told us that he remembered being with Bradley in heaven.

He told us that him and Bradley were playing Frisbee by a pond.

I told Jacob to tell us more.

And Jacob said he couldn't because he only remembered half of it.

It IS like they have know each other FOREVER.

Jacob cannot leave for school without hugging and kissing Bradley.

One day he came back, frantically knocking on the door

and crying because he had forgotten to say goodbye to Bradley.

And Bradley ALWAYS smiles when Jacob is near.

Tonight Tom and I have been talking about the possibility of Bradley having brain damage.

We have been talking about that first week when Bradley was unconscious and in the PICU.

AT THE TIME

we did not fully grasp what was going on.

I remember Tom telling me one night that they were just treating Bradley

because they HAVE to treat children who are admitted.

WE DID NOT GET IT.

I remember when the surgeon came and told us that Bradley could die

and him apologizing for being so direct.

That was a crazy night.

And the next day we asked Bradley's nurse if he was still sedated because he was not awake.

He was not moving or crying or anything.

And the nurse said he was not on anything that would make him calm.

She said that was "just him".

And the nurse, the next day, had been his nurse the night he had the emergency surgery.

And she came in and gave me a big hug and told me that she had gone home to her husband

and son and cried and hugged them very tight that night.

She had left at shift change before the surgery and thought that perhaps her patient wouldn't make it.

HE WAS IN THE PEDIATRIC INTENSIVE CARE UNIT!

HE WAS UNCONSCIOUS FOR A WEEK!

And although no one ever said the word, it was like he was in a coma.

One week later, after we had taken him to the hospital, I was in church.

I was listening to one of my most favorite hymns being sung by a good friend.

Come, Thou Fount

Bradley was still in the hospital; things unsure with him. Still unconscious.

I missed him and wondered why we were going through this and

knew that THIS trial was tuning me to sing Gods praise.

As she finished my cell phone buzzed with a text message.

It was my parents, who had stopped to see Bradley on their way out of town.

My Dad said that he was awake and that I needed to come see him.

I hurried down to the hospital and held him.

He was finally there with me again.

I hadn't seen the whites of his eyes for a week.

And Tom and I are starting to see that he's not developing like our other babies.

And we are starting to see that he has jerky, uncontrolled muscle and eye movements.

And we are starting to see that there is possibility of brain damage.

And I think, I'm starting to see it because I'm ready to,

but also because he should be growing out of these things and he is not.

AND I KNOW THAT I WAS FOREORDAINED TO DEAL WITH THIS.

As hard as this is

THIS IS and was WHAT WE WERE MEANT TO DEAL WITH.

I never imagined this. But this is it.

And I believe that Jacob and Bradley did play Frisbee by the pond in Heaven.

And that Bradley and Jacob knew that Bradley was going to have these challenges and so they were enjoying their time together up there in Heaven before they came and got their bodies.

And a few minutes after Jacob told us that, I heard him talking to Bradley about it.

And I heard him ask Bradley if he remembered it.

And I saw Bradley smile.

What Dreams May Come

2012-01-13T17:48:00.000-08:00

I had a dream last week and I've been thinking about it ever since.

In the dream I was at another ward member's home.

She was holding a scout activity and teaching different crafts.

I was looking around at all the boys and the different things that they were doing.

My attention was caught by a 14 year old boy who was very attractive.

He had black hair and the cutest face.

I kinda had a crush on him.

I noticed his young arms and how strong and toned they were.

He was learning how to feather sculpt and was quite good at it.

I asked him to make me a feather.

He smiled and I was taken back by his good looks.
He reminded me of Tom, when we were younger.

It was time for me to leave so I left pushing Bradley in his stroller.

We walked out into the cold dark air and I suddenly felt VERY scared.

I was alone in a really bad neighborhood.

I was far from home and I didn't know how I would ever get back on foot.

I kept thinking about that boy and wishing he'd come and rescue me.

I got to a bus stop that was full of people and I looked down at

Bradley and he was out of his belt and flopped over.

I straightened him up, and buckled him back in.

I asked the people if this bus went to Henderson.

They didn't know.

I tried to call Tom and my cell phone would not work!

I felt so alone, so cold, so scared.

AND I could not stop thinking about that boy and wishing that he would come save me.

I woke up and realized, that boy was Bradley.

My eyes sting today from crying.

I have been fretting all day.

My boy won't hold up his head.

He's six months old in a week.

When I went to get Jacob from school, I opened Bradley's door

and he was flopped over in his car seat.

His head almost touching his toes.

It's like he has no strength or something sometimes.

It is a regular occurrence.

I don't know what it means when you cannot hold up your head.

I know that physical therapy weekly has not helped much.

And the exercises that they show us how to do, we practice constantly, with little improvement.

I'm so worried that Bradley is NEVER going to hold it up.

I'm so worried that there is something more that we don't understand with him yet.

We have put off seeing the neurologist at the advice of the pediatrician.

But I'm starting to think that we do need to go see her.

I'M SO SCARED!

AND I DON'T KNOW IF IT'S BETTER TO LIVE IN A NAIVE BLISS OR NOT.

I just want him to be the normal young man I'm dreaming of.

The young man I imagined when I heard he was a boy.

That is what every Mother wants.

AND I don't know if he will be THAT in THIS lifetime.

But I know that God wanted me to see who he really is and so he gave me that dream.

And I cannot wait to see Bradley like that.

In this life or the next.

I have hope for that day.

heelsticks - OK

2012-01-07T23:22:00.000-08:00

I'm currently doing everything, I never thought, I would ever do.

When Bradley passed the swallow study I was so excited to give him liquids!

I came home, sat on the couch with him, mixed a 4oz bottle and put it right into his mouth.

To my surprise he didn't suck on it like I thought he would.

He actually pooped out after only 1oz.

I told him that this was the moment we had been waiting for; LIQUIDS!

But he didn't listen.

He was very fussy that day and didn't eat much.

By that afternoon I remembered what someone had said at some point.

Babies with fundoplications like Bradley, eat BETTER while being vented.

So I sat under my rubber band string, opened him up and TONS OF GAS escaped.

And then he chugged down a whole 4oz bottle!

He was HUNGRY and he hadn't burped so he couldn't suck!

I decided to hang rubber bands from more places in the ceiling

so that I could feed him sitting anywhere.

I still have the rubber bands up and use them daily.

When we are out, it is easier to give him a bottle in his car seat so that I can hang the tubbie on there.

It's a hassle!

And he doesn't get held as much as my other babies did

BUT HE HAS TO EAT!

We cuddle later.

He had to have his blood drawn today.

He has to have it done every month otherwise he will revert back to this boy:

I remember when I thought this picture looked healthy.

Perspective.

But anyway, the phlebotomist we got today was a jerk!

She wouldn't listen to anything I was saying about his sites being blown.

She used tourniquets on his every limb.

I was about to get up and kick her a** and

then I felt a sense of reason wash over me as I told her firmly,

"YOU ARE HURTING HIM!"

"This doesn't hurt" she quipped back!

I said LOUDLY, over his cries, "YES-IT-DOES!"

She finally stopped and got a lancet to do a heel prick.

By this point Bradley had lost it!

He was screaming bloody murder because he did not trust the woman.

She had touched him too much.

Reminded him too much of times before.

My big kids were in the waiting room with Tom.

They peeked around the corner into the space where we were.

Seeing their faces calmed me down.

They were all stair stepped and perfect looking.

And I looked down into my arms and saw my last little piece to my perfection and I knew that

ALL OF THIS CRAP

was going to be okay in the end!

As she filled the last vial and squeezed one more drop from Bradley's foot,

I thought about our Savior and him bleeding from every pore and how much pain HE felt.

And how his Father felt looking at Jesus and then looking back at US and knowing it would be OK!

What a marvelous plan it is.

How much our Father in Heaven loves us!

I think that was a great moment for me.

I saw a glimpse of eternity.

And I would have never seen that without Bradley!

NEVER

Prints in His Hands

2012-01-01T22:16:00.000-08:00

My patriarchal blessing talks about me becoming a Mother.

It talks about the weight of the calling of being blessed to be a Mother.

And it says that if I hold fast to the gospel principles I will reap the full benefits of that blessing.

There have been Sundays I've thought about ditching church.

Especially with Bradley's health history.

And all of the children and their germs at church.

But I KNOW that my job of being a Mother will go smoother if I take my kids to church.

And so today I took them. Bradley and all of them.

Sacrament was wonderful.

The speakers spoke about the new year and commitment to our new goals.

Then in Sunday school the teacher introduced the section of scriptures we are studying this year.

The Book of Mormon.

Most non-Mormons think the Book of Mormon was written by Joe Smith and so it is about him.

But it is NOT!

It is about our Savior Jesus Christ and his life and ministry on the American Continent.

The teacher asked us to tell our favorite part of the Book of Mormon that testifies of Christ.

He went around the room.

Each person giving their faves.

My heart was racing as I knew my most favorite part of

the Book of Mormon and I felt inspired to share it.

When he got to me, I got emotional and so I could not say what I had wanted.

But THIS is my favorite part:

3 Nephi 11

13 And it came to pass that the ^aLord spake unto them saying:

14 Arise and come forth unto me, that ye may ^athrust your hands into my side, and also that ye may ^bfeel the prints of the nails in my hands and in my feet, that ye may know that I am the ^cGod of Israel, and the God of the whole ^dearth, and have been slain for the sins of the world.

15 And it came to pass that the multitude went forth, and thrust their hands into his side, and ^adid feel the prints of the nails in his hands and in his feet; and this they did do, going forth one by one until they had all gone forth, and did see with their eyes and did feel with their hands, and did know of a surety and did bear record, that it was he, of whom it was written by the prophets, that should come.

I really hope that someday when I see the Savior again

he will invite me to do the same and come touch his hands and his side.

And I hope that in that moment I remember with a perfect memory what he did for me on the cross.

What he did for my children.

For all of mankind.

That we too may become perfect again.

That our short comings, our imperfections will be made up; and be no longer.

And that Bradley will GET the perfect body that I so badly want for him.

That our time that we didn't have together will be made up to him and I; somehow.

I'm excited for that day.

And I imagine it often.

And I didn't get to say that; but that is what I know will happen.

Progression

2012-01-01T05:38:00.000-08:00

I've been dreaming about holding Bradley on my hip.

I look down and to my left and he is there staring up at me with his beautiful long lashes.

I'm longing for the day when he finally has enough body control to do it.

Last night I thought I'd try to get him to do it.

I spread his legs and wrapped them around my side as I supported his back.

I looked down at him like I do in the dream.

And he let out the loudest yelp you have ever heard.

It's not time yet.

He STILL has had SO MUCH PROGRESSION!

Everyday he gets better.

Looks better.

But I feel like I'm watching a REALLY slow movie.

I'm just impatient.

The docs all think, that for him, he's doing great.

And as his Mother that first qualifying statement really bugs me!

I want him so badly to be like my other babies.

But the truth is he's not my other babies.

"This is a world in which we are to prove ourselves. The lifetime of man is a day of trial, wherein we may prove to God, in our darkness, in our weakness, and where the enemy reigns, that we are our Father’s friends, and that we receive light from him and are worthy to be leaders of our children—to become lords of lords, and kings of kings—to have perfect dominion over that portion of our families that will be crowned in the celestial kingdom with glory, immortality, and eternal lives."
Brigham Young

A few weeks ago we were sitting in the foyer at church.

A friend of mine who had her baby 4 days after Bradley, came walking in.

She was holding her boy on her hip.

I shot a look at Tom.

After she passed I told Tom that Bradley wasn't a hip baby yet!

Tom said her baby didn't spend time in the NICU or unconscious either.

We are judged according to ourselves.

SO GLAD FOR THAT!

The judgement will not be a comparison.

We will not be judged against our peers.

What a merciful Father we have.

And as Bradley's Mother, I judge him according to his whole existence.

(others do not)

And that is how we will be judged by our Father.

He will take into account our WHOLE existence.

He will understand where we've come from, and what we've been through.

And only he can do that!

Because he's the only one who has really known us from the beginning.

Mediocre

2011-12-31T17:16:00.000-08:00

The symbol of the new year is a baby.

Because of the new-ness of life.

The potential.

I've had lots of new-ness this year!

New Baby.

Sick Baby.

New way to feed that baby.

New Doctors.

New schedule.

New everything!

This new baby has changed my life.
I knew, before I conceived him; that he would change my life.

Ironic.

We ARE foreordained for some of the things that we deal with in this life.

I understood that more as this year unfolded.

Yesterday my Sister and I had a lengthy phone conversation.

(142 minutes to be exact)

She had her sixth on Thanksgiving; a girl.

We were talking about all of our kids and school and

about Bradley and how his Docs think he's going to have a low IQ.

One of her children struggles with dyslexia.

She told me it's okay to be mediocre.

She said that her six mediocre children would do more combined than one excellent child would.

(LOL! & true)

It's not so bad to be mediocre.

I like to NOT be too extreme.

I like to stay somewhere in the middle.

And I wondered how I would ever make it to the celestial kingdom with that attitude...

THEN IT CAME TO ME...

(something that I've been taught my whole life)

THROUGH THE ATONEMENT!

The grace of the atonement will raise me out of my mediocrities to the perfect being I imagine.

His grace is sufficient for all men.

So it's okay to try your best; and even if in the end you are still somewhere in the middle.

His grace is sufficient.

Attempt

2011-12-22T22:09:00.000-08:00

I'm attempting to make fudge this year.

I'm not having any luck.

If it sets up; it's grainy and crumbly.

If it's smooth; it never sets up.

We had to eat out tonight because the kitchen is a disaster.

I will try again in the morning.

As I was cleaning the kitchen tonight and wiping down every surface,

I got to the spot on the counter where I keep all of Bradley's medications.

And I thought to myself:

"I cannot believe I have a bowl on my counter full of prescriptions for my 5 month old baby"

THIS YEAR HAS BLIND-SIDED ME.

And there are moments where I'm still processing what has happened.

And I feel like at any moment I'm going to wake up from this dream.

But I never do.

And right after that Tom came in and told me he thought Bradley's Mickey button was clogged.

We went upstairs laid Bradley on the bed and took his button out.

The whole time I was shifting my weight back and forth and telling Tom "I can't do it!"

And after we pulled it out

(it took some force because of the pressure)

we saw that it was in fact clogged with a wad of string.

We both said "Ewww"

I rinsed it under hot water, put it back in and it was working again.

This year has been an attempt to make me more than what I WAS.

There have been several times that I've felt like giving up or running away.

But somehow I've made it through.

And hopefully I will finally make some good fudge that is creamy and melts in your mouth and firm.

And it will be SO perfect I will forget about all the mess I made trying to perfect it.

And I think that is what God is doing with me in my life right now too.

And someday I'm going to be so perfect I will forget about the mess I am currently in.

"How did he get sick Mom?"

2011-12-20T04:13:00.000-08:00

Last night at dinner the kids had questions about Bradley.

Jacob wanted to know how Bradley got sick.

We have talked about it a lot with them but

I think their brains are finally starting to process the whole thing.

And I think I am actually starting to wake and come out of it too.

I'm amazed I have come through this and still made good decisions for Bradley.

And I told the kids about Bradley's hypo parathyroid.

And I told them that that is why he stopped sucking.

And I told them about the flaps in your throat that cover your airway and your food way.

And I told them Bradley's brain was not telling his flaps to close at the right time.

And I told them that the Doctors think that Bradley

may have troubles learning when he goes to school.

And Jacob said:

"Mom, it is okay. I will help him learn things. I will teach him Mom."

My heart swelled with pride as I thought about what a good brother Jacob is.

He loves Bradley so much.

And I wonder all the time why God sent Jacob a brother like Bradley.

What God wants Jacob to learn from this.

How it will effect Jacob later.

I worry about all my kids dealing with this.

With what has happened and what will happen.

But I KNOW that families are forever.

And we will always have each other.

And God wants us to be together in this life and learn from one another.

And Tom keeps telling me that they will be okay.

That all of them have the capacity to deal with this.

I DID get the special spirits promised to me.

Not only is Bradley special,

They are ALL special!

And I am so lucky.

Keep Your Head Up

2011-12-18T14:18:00.000-08:00

We have another child in our ward who has had a feeding tube and a fundoplication like Bradley.

He has cerebral palsy.

He got stuck in the birth canal and was born with an oxygen level of 30.

The doctors told his mother he would either die or be a vegetable.

He's 12 now.

He's in speech, physical and occupational therapy.

Two years ago he finally got out of his chair.

He can walk now.

His mom says he's a miracle.

His mother and I have recently become closer.

We talk about our boys all the time.

Last night was the ward Christmas party.

We were talking in the corner of the gym and she asked to hold Bradley.

As she held him his head flopped like it does.

She remarked how much holding Bradley reminded her of holding her boy when he was a baby.

Her words stung my heart.

Bradley is 5 months old and he STILL cannot hold up his head.

We go to physical therapy weekly for it.

We practice constantly and he's SLOWLY having improvement.

But nothing like my other babies.

My heart tells me that there IS a neurological reason why

he was not born with the ability to swallow correctly

and now why he cannot hold up his head.

AND THE BRAIN CAN HEAL; HIS HAS ALREADY.

This morning after we had loaded in the car for church,

Tom turned the key and the car would not start.

The battery was dead.

Tom and I laughed as we pushed the car out of the garage to jump it with the truck.

LIFE IS FULL OF CHALLENGES!

This is part of mortality.

This really is a lone a dreary world that we were sent to.

AND WORK AND TOIL IS PART OF IT TOO.

When we finally got to church we sang Christmas hymns.

One of my most favorite hymns is Away In A Manger.

Today the words spoke to me:

I love thee, Lord Jesus, look down from the sky
And stay by my cradle till morning is nigh.

Be near me lord Jesus; I ask thee to stay

Close by me forever, and love me I pray.

Bless all the dear children in thy tender care,

And fit us for heaven to live with thee there.

This life can be really sad sometimes, can't it?

And we are so lucky to have the love and comfort of our

dear Savior to see us through our sad times.

And as I lay my babe under the Christmas tree this year,

like I do every year I have a baby,

I AGAIN feel my Savior's love.

I know his Heavenly Father and his Savior REALLY DO love him.

And they love me.

And they love you too.

And that no matter what our challenges are, they will be with us to help us through.

Dr. Fiore

2011-12-16T10:06:00.000-08:00

This is Bradley Herrick Brinkerhoff.

And he wouldn't be alive today if it wasn't for this man:

We went to see Dr. Fiore yesterday.

He's my favorite of all of Bradley's doctors.
I like his personality and could see us being friends in real life.

I got to share the exciting news that Bradley can swallow liquids now!

Dr. Fiore was surprised.

Everything with Bradley's g-tube is fine. No infections. No granulation tissue.

And I told Dr. Fiore how tired I am of going to Doctors appointments.

I told him that I'd call him if I had a problem but otherwise
I really didn't want to see anymore doctors for a while.

I told him I've had 3-4 appointments a week since Bradley was released in September.

Dr. Fiore understood and said that we could come see him in six months

and that he trusted me to call him if we had a problem.

I really wanted to squeeze the man and tell him how much I LOVE HIM for saving Bradley's life!

But it seems awkward.

We scheduled the next appointment for June 21st 2012.

That is one day short of one year from Bradley's original due date.

I told Dr. Fiore the next time I'd see him, Bradley would be close to a year old.

He smiled and said, "Happy Birthday!"

How could I ever thank this man for what he has done?

I've told him thank you and it seems so unequal to the service rendered.

The fact that I can have this memory is because of his work:

Dr. Fiore got about $4,000.00 for what he did that night at Sunrise Hospital.

Doesn't seem like enough, does it?

The Christmas Letter - 2011

2011-12-15T22:17:00.000-08:00

Christmas 2011

Dear Friends and Family,

It is with love and gratitude that I’m writing this letter this year. We have so much to be grateful for!

This year has been a year of challenges and growth for our family.

In July we welcomed another son who was very tiny. We named him Bradley Herrick Brinkerhoff. He was 4lbs 8oz and 18 inches long. Within two weeks he was admitted to the children’s hospital for failure to thrive. When he was in the hospital they discovered that he was missing his parathyroid gland, which regulates the body’s use of calcium. He also was aspirating liquids into his lungs, which was giving him pneumonia. He was given a surgically inserted feeding tube in his stomach wall to make it easier to feed him. He came home 5 ½ weeks later at 6lbs 4oz. In November he passed a swallow study that observed he was no longer aspirating liquids! He has physical therapy weekly and follow-ups with all his specialists including a geneticist who will be looking at his genes for abnormal connections. It’s possible that he may have a syndrome of some sort but it takes 6-8 months to be seen by the geneticist and so we are patiently biding out time. We love him and we feel that his special spirit has entered our home to teach us more about this life and eternity. He nearly died in the hospital and we know his tiny life is a miracle we were meant to witness.

Madeleine is in the second grade this year. She has received straight A’s so far and we are all impressed with her abilities. She chose to be baptized in October. Tom was able to baptize her and we are so proud of her for being such a great example to everyone around her. Her sweet spirit radiates from her face and when she is home she is a huge help to me!

Jacob started Kindergarten! He’s slowly learning his high frequency words. He’s quite the popular kid and everyone knows his name. He has a personality that everyone loves. He always has something funny to say and keeps us all entertained. We just love having him in our family!

Charlotte turns three in January. Where did the time go? She loves being a big sister and spends most of her day alone with Bradley and I. Grandma has been a big help in caring for Charlotte when Bradley and I have appointments. She loves to sing and dance. She loves taking care of her baby dolls and reading books.

Tom and I continue to toil along as parents and providers. Most nights we are exhausted from everything there is to do. But we know that God sanctifies our work. I have an online business of handmade fabric flowers that is having lots of success; and I am so grateful for the help it is providing.

We hope that this letter finds you all well! Hopefully this year you too have seen the hand of our Savior Jesus Christ in your life.

Love,
Tom, Mary, Madeleine, Jacob, Charlotte and Bradley Brinkerhoff

The Fairytale

2011-12-13T12:49:00.000-08:00

When Tom and I were engaged, I imagined our children.

Our future.

I didn't imagine Bradley's challenges though.

And for awhile I've been sad and felt like the fairytale had ended.

But this morning it dawned on me:

THE FAIRYTALE HAS NOT ENDED!

EVERY Fairytale has it CHALLENGES.

Sometimes it's a dragon, or a witch, or a villain.

The happily-ever-after isn't until AFTER the challenge is overcome.

You cannot have a fairytale if there is nothing to triumph over.

It has NOT ended!

I'm currently slaying the dragon.

AND I'M STILL GOING TO HAVE MY HAPPILY-EVER-AFTER!

Roll With It

2011-12-13T10:08:00.000-08:00

Some people are born with challenges.

I used to believe that people who had medical problems were making a lot of it up.

That medical problems were caused by poor diet and lifestyle.

I know; I was a jerk!

And someone has

SURE PUT ME IN MY PLACE!

Yesterday was Bradley's circumcision.

It was a surgery because of the way his penis was attached to his scrotum.

He could have formula until 1am and then only pedilyte until 4am. The surgery was at 7:30am.

When we got there, we had a list of questions to answer.

All of which were not the simple "NOs" I used to give.

I had to list his meds, the dosage, and frequency.

I had to go through the history of EVERYTHING he has been through.

It took about an hour.

At a certain point the nurse had questions about his development.

She said he was in the age group of 4-6 months and asked which of his milestones he had meet.

He's only met a few; maybe half the list.

She marked the ones he had met and then said "he's doing just fine"

as I saw her type DEVELOPMENTALLY DELAYED.

We waited for two hours for them to be done.

I worried about him the entire time.

And when the urologist came to get us and bring us back she said

"Everything went well except that it took us just as long to get an IV as it did the procedure.

I finally got him with my loop."

I don't know what a "loop" is and I don't know if I want to know.

But I take comfort in knowing that he had gas until he got the spinal.

When I finally saw him he was swollen and screaming.

He had tiny pokes all over his hands and feet and he no longer

was wearing the gown they had us put on him in pre-op.

And he's home now and he's double diapered.

The diaper that touches his skin has a hole in it to protect the dressing.

That diaper catches the poop.

The diaper outside the holy diaper catches his urine.

I have made about 15 holy diapers already.

And he's used them all because of the antibiotics he's on.

And with everything I'm going through and have gone through,

I have always been prepared.

And truth be told I have ALWAYS loved using syringes!

And it makes me a little crazy when I find Charlotte's dolls with syringes and tubes around them.

And when I hear her say words like "medication"

Three year olds should not know words like that!

But I am reassured by the knowledge that this is meant to be.

Bradley is Charlotte's brother and she will learn to roll with all of this.

This is what God wants for Bradley AND our family.

Giving and Recieving

2011-12-08T16:50:00.000-08:00

And above all things have fervent charity among yourselves:
for charity shall cover the multitude of sins.
1 Peter 4:8

Last night, as a family, we walked around Target looking at Christmas things and dreaming.

There was a large group of teenage girls giggling and talking excitedly
as we passed them by the dollar section.

Tom mumbled to himself, “Wo! Watch out!”

I laughed.

When we got to the back of the store, another group of girls was gathered around a cart with two adults discussing if a 12 year old girl would like some clothes they had picked.
I could tell they were doing a service project.
They were shopping for Christmas for someone;
some family in need.
My heart was warm as I imagined a twelve year old girl
gazing at the beautiful clothes on Christmas morning.

Right after Bradley was released from the NICU we had an appointment across the valley
and so we stopped to fill the tank at the station.
As I slid my card in I realized I had forgotten my PIN.
It had been 7 weeks since I had been shopping FOR ANYTHING!
We had survived on the dinners and service of others.

Service warms the soul.
It sanctifies us.
It makes us more holy.
It makes us more like God.

This year I have been the receiver of SO much service!
Some from long time friends and family;
Some from people I have NEVER and WILL NEVER meet.

Our burdens have been lifted by others.

And I wish that I could repay EACH person who has given,
because I have a work ethic that makes me want to.
But I know that it is impossible.
EVEN if I KNEW THEM ALL,
and gave back value for value what was given,
I could never give them the warmth that I’VE felt, as I received;
WHICH IS WORTH WAY MORE THAN THE MONITARY VALUE!

GODS HANDS ARE OTHERS HANDS.

I’ve seen, through this trial, that he IS aware of me and my tiny family, and our tiny struggles.

I have so much to be grateful for.

And there have been times that I've been upset
with him for giving me this trial.

And STILL God has never forsaken me!

He really does love his children.

Great Parents

2011-12-06T21:37:00.000-08:00

I'm kinda in the mood to complain a little.

Today Bradley had Physical Therapy.

When he was finished stretching with the therapist she said "I can tell you guys are great parents"

I was almost in shock.

I'm sure I gave her a very puzzled stare.

When we got out to the car, I tearfully told Tom that

I had NEVER heard one person at Sunrise tell us that.

The nurses were constantly telling me how much I had SCREWED

up Bradley by having him at home and at 44 weeks.

CONSTANTLY!

And after we were released I really wanted to get a survey in the mail so I could complain about their nurses not being able to keep their opinions to themselves.

BUT I NEVER GOT A SURVEY!
I don't think Sunrise really cares about patient satisfaction.

But I am grateful that Sunrise DID save his life.

And I'm grateful I get to hang the six stockings this year like I had planned last.

I know that if we had lost him my tears would have watered the

decorations more than they already did this year.

The Endocrinologist is shedding more light on Bradley's Hypo parathyroid.

He said we need to think of it like a birth defect that Bradley doesn't have a parathyroid gland.

He said it can never come back, he just doesn't have one, just like a person who's born without limbs.

Tom looked it up later.

The parathyroid gland is as big as a GRAIN OF RICE!

THAT'S TINY!

What are the chances?

And we can easily control this problem with high doses of oral calcium supplements.

Endo says he will never grow out of this.

Endo said in his practice of 6,000 kids he has 6 or 7 patients who were missing their parathyroid gland, at birth, like Bradley.

Endo also said Bradley is gaining weight, but not growing much in length.

We talked about growth hormones at the age of two.

SCARES ME A LITTLE!

But really, what hasn't been scary about Bradley.

Next week he has his circumcision.

Yep, it's a surgery, at the hospital, where he needs anaesthesia.

He has a urologist too, because nothing is simple for our Bradley.

HOPE THAT WASN'T TOO MUCH COMPLAINING FOR YOU!

But sometimes I just got to vent too!

Repeat the Swallow Study

2011-12-02T14:40:00.000-08:00

Monday was a very monumental day for our Bradley.

He passed a swallow study.

He can swallow liquids again without aspiration!

It's a joy to feed him normally again.

While we were waiting to go into the procedure there was another baby boy there.
He looked to be two months old. I saw his feeding tube sticking out of his blanket.

I smiled at the Dad, who looked tired and stressed and said, "We have a g-tube too!"

The father instantly perked up.

"REALLY?" he replied.

I told him it would get easier when he got the mickey button.

The baby had only had his tubie for 3 weeks and was still venting 24/7.

The dad asked why we had a g-tube.

I said because he aspirates liquids.

The father looked at me with a blank stare.

The mother came back from registering for their procedure.

She seemed interested in the conversation.

Their baby looked gaunt and very small.

VERY much like Bradley had looked in the NICU.

I told the mom Bradley's story.

She looked at me blankly.

She asked if Bradley was having trouble gaining weight.

It seemed like an odd question to me but I responded,

"Before they figured out that he was aspirating; he did not gain weight."

She still had a blank stare like she didn't know what I was talking about.
I thought they had a g-tube too and so she would know.
But she didn't act like she did.

Their names were called and they went into the procedure.
The walls were thin and I didn't mean to overhear but I did.
Their baby was aspirating too. He was a silet aspirator.
He hadn't been gaining weight and his Doctor had ordered a feeding tube because he wouldn't eat with his mouth while he was in the hospital.
But NO ONE had done a swallow study on him.
And because he wasn't gaining with the supplements through the tube,
his doc had ordered a swallow study.

THAT'S WHY SHE DIDN'T UNDERSTAND A WORD I WAS SAYING.
They had a similar situation they were just finding it out in a different order than we were.

When they were finished they came out.
The mom was as white as a ghost and looked like the air had been knocked out of her.
I felt a twinge of her pain.
Reminded me so much of the time I had found out about my boy.

IT IS SO SCARY TO HAVE A CHILD THAT ASPIRATES!
Every time they cough you worry they are regressing.
And then to hear that it is neurological is not easy either.

A HUGE WEIGHT HAS BEEN LIFTED OFF MY SHOULDERS.

I will never EVER forget where we were.
This has been the biggest challenge of my life.
And I'm so grateful it was so short lived.

I'm going go give Bradley a bottle now and savory every moment of it!

Weak Things Made Strong

2011-11-27T21:01:00.000-08:00

"If we have the desire to play the game of life well, if we keep trying

and practising, we have to endure to the end.

We have to be determined to overcome our faults and stay in

there trying to score regardless of the handicap.

In 1960 the Olympics were held in Melbourne, Australia.

There on the winner’s platform stood a beautiful, tall, blond American girl.

She was being given a gold medal.

The boys whistled and said, ‘There’s a girl who has everything.’

“Tears ran down her cheeks as she took the medal.

Most people thought she was just touched by the victory ceremony.

The thing most of the audience did not know was the story of her determination.

At the age of five she had polio.

When the disease left her body, she couldn’t use her arms or legs.

Her parents took her to a swimming pool where they hoped the water

would help her hold her arms up as she tried to learn to use them again.

When she could lift her arm out of the water with her own power, she cried for joy.

Then her goal was to swim the width of the pool, then the length, then several lengths.

She kept on trying until she won the gold medal for the

butterfly stroke in the Olympics at Melbourne, Australia.

This is one of the most difficult of all strokes.

What if Shelley Mann had got discouraged? What if she had not learned [to endure]?”

(Norma Ashton, “Be a ‘Most Valuable Player,’” Improvement Era, Sept. 1965, p. 787).

What wonderful knowledge and help the gospel brings.

We are so lucky to have the standards we do.

How hard the last few months of my life would have been without a knowledge of eternity.

When I was a girl

I never thought I would EVER have a child like Bradley.

I never had EVER had bad health myself.

The only people I knew who died were Grandparents.

And then when we almost experienced the worst thing a Mother could go through,

my testimony was the first place I went.

I did not doubt.

I knew God loved me.

I still do.

He did not leave me to struggle alone in this world.

His arms have been around me through out this whole ordeal.

AND I AM SO LUCKY THAT SOMEONE TAUGHT ME TO RECOGNIZE THAT.

And I don't know what any ones future holds, but I know that the

gospel will make whatever is in each of our future's easier.

I cannot sing a sacrament hymn without remembering those days in the NICU

when I felt alone, and sad.

And then feeling the whispering's of the spirit comforting me.

Telling me that it was okay.

And I would never, EVER trade the last few months for any other temporal challenge.

I REALLY DO FEEL BLESSED TO HAVE EXPERIENCED THIS!

And I consider myself lucky!

Lucky to have THESE challenges.

Someone told me that I would start to love this challenge and I really am starting to love it :)
I REALLY AM!

The Boy Who Almost Wasn't

2011-11-17T16:20:00.000-08:00

Today Bradley saw his Gastro.

While we waited there was a girl who was in a special wheel chair.

She looked like she had cerebralpalsy.

Her mother was talking to her.

The girl couldn't talk or walk.

She had a g-tube, a colostomy bag, and a tracheotomy, from what I could tell.

The mother looked exhausted and stressed.

I could sympathize.

I wanted to tell the mother that she was SO lucky to be given a special spirit.

But I was choking on my tears, so I couldn't.

I JUST KEPT THINKING ABOUT HOW LUCKY BRADLEY AND I WERE!

He has been through the wringer and you CANNOT tell.

The power of the priesthood, fasting and prayer is real!

And we have been blessed.

And I also know that it has been God's will that

Bradley AND the girl in the special chair are the way that they are.

The gastro ordered to repeat the swallow study.

I'm quite excited about it!

And

We talked about Bradley's only diagnosis being hypo parathyroid

AND

how Bradley's primary Pediatrician doesn't think Bradley has a genetic syndrome,

and
how he would know because he used to be a geneticist.

I told the gastro that Bradley's Ped has NEVER had a patient with a hypo parathyroid before.

Bradley's Gastro said he's never had one either; EVER!
That hypo parathyroid is something he learned about in medical school, but never something he's seen.

I asked the gastro if WHEN the human body starts to shut down,
if it will start aspirating liquids.

He said it can.

I wanted to know if he thought that babies with
hypoparathyroid were rare because the usually die.

He said, "YES, and it's probably blamed on SIDS"

I said "If we had been 12 hours later to the hospital Bradley would have died."

He said "Yes."

BRADLEY WAS IN ROUGH SHAPE WHEN HE WAS ADMITTED.

AND FOR TWO DAYS WE THOUGHT HE MIGHT.

I'm hoping that's the reason why he started aspirating.

I am not a doctor, but I'm hopeful that all of this is possible.

AND THE FACT THAT HE has LIVED
AND DOESN'T HAVE SEVERE DAMAGE FROM ANY OF THIS

is nothing short of a miracle.

P.S. I hope that the geneticist laughs at us and tells us to all go home when we DO see her.

P.P.S. A girl can hope, right?

P.P.P.S. With what we've lived through, anything is possible!

Sent to Excel

2011-11-11T16:26:00.000-08:00

Before we decided to get pregnant for the fourth time,

we seriously talked about adoption.

We talked about it being a way that we could guarantee a brother for Jacob.

What silly plans I had.

We were very close to starting the process.

But I chickened out because it IS such a process!

And for us it was easier to just get pregnant.

And I knew that Jacob would get his brother either way.

Wether we made his body or someone else made his body.

And I remember telling a close friend that this next child was meant to be in our lives.

And then when we were in the NICU on a sybling visit day,

there was a woman and two girls who had come to see their brother.

It was a Sunday and they had just come from church.

And I could tell they were LDS too.

She told the social worker that they didn't know the babies last name
but they were here to meet the brother they were hoping to adopt.

AND I KNEW

then and there
BRADLEY WOULD HAVE
come to us naturally or through adoption.

And that this was the body he was supposed to get.

Even if it wasn't a body that I normally made.

Lately my Young Women have been learning the following song for Young Women's in Excellence.

"Sent to Excel"

by Christy Riches Hinkson

Sent to excel.

I am a part of Father's Plan.

I'm here to do the things that I am finding out I can.

Sent to excel.

I'm getting better every day.

I'm here to learn and grow and follow those who show the way.

I wasn't sent, to stay the same.

To be my best is why I came.

And so I search, and soon I see, the excellence inside of me.

Sent to excel.

With a desire to be much more.

I feel unsettled with, what I have settled for before.

Sent to excel.

I feel a striving from within.

Pulling me upward.

Whispering that I was born to win.

I wasn't sent, to stay the same.

To be my best is why I came.

And so I search, and soon I see, the excellence inside of me.

Sent to excel.

I'm getting better everyday.

Sent to excel.

I've been thinking about my mission here on the earth.

If Bradley never has a normal brain and

is therefore not tested in this life,
I know it will guarantee his salvation.

And he will be YET ANOTHER reason for me to WANT to make it.

I will want to be with him and so I will want to live my life accordingly.

Heavenly Father wanted to give me another reason to comeback to him,

and so he sent me Bradley.

And because of Bradley I WILL excel.

Maddy and Bradley's Special Day

2011-10-26T17:48:00.000-07:00

Maddy was quite nervous about the day before we left the house.

After we got there we made everyone wait while we snapped some pictures.

Bradley wasn't nervous at all!

Afterwards she was all clean and we took some pics in her new purple dress.

She is really quite beautiful.

And when we got home we had soups.

And we took pictures of everyone in the family for the genticist.

And it was really a special day; like I had planned.

Somethings you CAN plan!

Control

2011-10-25T15:40:00.000-07:00

Most mothers would like to think they are in control.

And to some degree, we are.

But when you do EVERYTHING you can to make a healthy baby,

and that's not what you get,

you realize that you were NOT in control.

And there is no amount of holding that will fix a mis-shappen head.

And nothing that I have done has made Bradley

strong enough to take his bottle more and his g-tube feeds less.

And I had no control in him only having a one day stay at the hospital for RSV,

even though the Pulmonolgist wanted to tell me I did a good job...

The one who IS in control, is the great creator of us all.

And he is bending and molding our lives to make us the people he wants.

The people he needs.

Some of us he's going to bend until we break, because that's what he needs.

And if we do break in the process, he has a way to fix us.

And we will be okay.

And our test is to see if we will let the creator mold us.

If we will accept his will.

If we will still love him and thank him for what he's doing.

And when he's finished with his creation, some of us are going to be pretty glorious!

And we will be glad we gave him the control.

Different

2011-10-20T16:47:00.000-07:00

When Bradley was released from the hospital we were not sure

why he had had all the issues he does.

I was in denial and didn't want to say that he may have a chromosomal syndrome.

But that's the truth.

Think of Downs Syndrome (because everyone knows it)

Bradley may have something like that.

To make a baby you need 46 chromosomes. 23 from Mom. 23 from Dad.

With Downs Syndrome there is an extra 21st chromosome.

Bradley has 46 chromosomes; so that is good.

But with his problems of aspirating milk, and his hypo parathyroid, the Doctors believe he has something wrong with one of his 46 chromosomes.

When the chromosomes hook up there are lots of possible abnormal connections that can be made.

An example of a abnormal connection is having two sets of the

15th chromosome from Mom, but none from Dad.

This is genetics 101.

Most of us forget it from biology our sophomore year.

Because of his particular problems we have a follow up with a geneticist.

She is very busy and it will take 6-8 months to be seen by her.

And that's okay because Bradley's problems have been managed.

And he is growing.

I got my packet in the mail from the genticist yesterday.

It's 15 pages of info Dr. Morris needs to evaluate Bradley.

This is the most interesting part of all of the things that she needs.

Photos of family members.

I'm sure this is going to be an interesting journey.

I really cannot wait for a diagnosis.

Today I told Jacob that Bradley might be different when he grows up.

Jacob said "I know"

I asked "How do you know?"

He said "MOM; WE ARE ALL DIFFERENT!"

Children really DO understand more than adults do.

Earth Stuff

2011-10-18T15:05:00.000-07:00

Mothers are amazing people.

The whole world would cease to function without Mothers.

Last night I talked with my Mom on the phone.

We were talking about Bradley.

I was crying.

She was telling me how wonderful it is to have him.

That he's teaching our whole family a whole lot.

I told her I secretly don't feel this way.

That I'm worried about his future.

That I don't know if he'll ever walk or talk or be married or have a normal life.

And do you know what she said?

She told me that all the stuff I'm worried about is just his "EARTH STUFF"

She told me to stop worrying about his EARTH STUFF.

'If he is special", she said, "the EARTH STUFF doesn't matter!"

She said there is more to his life than the stuff he does on the earth.

And his ETERNAL STUFF will be okay if none of his EARTH STUFF works out.

I love my Mom ♥

RSV and Getting Fat

2011-10-14T20:23:00.000-07:00

We had a little cold this week.

And Bradley had RSV.

He had a two day stay at the children's hospital.

It was very uneventful.

He came home on breathing treatments and now he's getting the RSV vaccine.

He gets 4 shots through out the flu season.

Each shot costs $2000.00

Thank God for insurance!

And the kids are glad he's home now.

It scared me.

I worried he would be there longer.

Because the last time I took him to the hospital he stayed for 5 1/2 weeks.

And I now know he weighs 9lbs 7oz!

AMAZING!

He is an amazing child.

He truly is.

I AM SO LUCKY TO HAVE HIM.

I AM SO LUCKY TO HAVE ALL OF THEM.

Today at Target, a lady told me I had my hands full.

I hear this about 95% of the time from strangers.

I only had Jacob, Charlotte, and Bradley, because Madeleine was at school.

I told the lady I had one more.

She gwaked at me, and then she asked, "Are you going to have more?"

That is such an interesting question now that Bradley is here.

He has changed me.

And while I don't know right now if I want one more;

I'm not ready to say I'm done either.

Because I CAN DO ANYTHING, and I AM A GREAT MOM!

AND ETERNITY IS FOREVER.

And a pregnancy is only 9 months.

(well not Bradley's :)

So we will have to WAIT AND SEE :)

Future Fear

2011-10-09T20:00:00.000-07:00

Last night we went to the temple.

A friend was going through for his first time and he asked Tom to be his Escort.

I was excited to go.

It has been too long.

I had an hour and a half before the session started; while he did his initory.

I went in and asked if they need help in the initory on the ladies side.

They had three names for me to do.

EVERY TIME I DO INITORY, I'M REMINDED OF MY OWN.

As I listened to the words of the temple workers, tears flowed.

On my day, long ago, I remember KNOWING that I WOULD bear children.

I knew that my body was a good body.

I knew that it would function like it should and that I would be a Mother someday.

And then each time I had a baby, I was reminded of that day.

The promise.

My body is miraculous.

I am so glad that I have had the experience of being a Mother.

What a beautiful blessing it is to carry your child in your tummy.

Then to bear them.

Then to raise them.

And I don't know what the future holds for ANY of them.

They all have lives ahead of them that I CANNOT plan.

And I'm having to accept that.

AND THAT IS SO HARD!
After being what I've been through with Bradley I'd really like to FEAR the future right now.

2 Timothy 1:7
For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.

I have the POWER to overcome the fear that grips my mind and my heart.
I really want to love and enjoy every moment of everyday with my little kids.
So I'm choosing to do so,
and as hard as it is,
I MUST!

Special Plans

2011-10-01T21:30:00.000-07:00

Madeleine and Bradley have always had a special bond.

When he was admitted to the NICU and she wasn't allowed to visit, she had a really hard time.

When I was pregnant we said that we would be blessing the baby the same time we

baptized Madeleine because the family would all be here.

But I didn't anticipate this:

That night in the PICU, I started thinking about planning a funeral instead of a blessing.

I thought about how sad Maddy would be to bury her little brother

instead of having her special day with him.

And I knew, that if that happened, we would see him again
and that he would be all perfect and white when we did.
And that was a comfort.

After he was stabilized and moved into the NICU,

we went to the distribution center to purchase his blessing outfit.

Things were still unsure with him and

I imagined what it would look like to lay his tiny body in a coffin,
in the outfit that I bought.

I CANNOT BELIEVE I HAVE LIVED THROUGH THE LAST TWO MONTHS.

THIS DOES NOT FEEL LIKE MY LIFE!

And I am so grateful that NONE of those things that I imagined came true!

I'm so glad he is home safe in my bed with me now.

I'm so glad to be planning this special day for Madeleine AND Bradley.

It is going to be a BEAUTIFUL day!

Isaiah 9:2

The people that walked in darkness have seen a great light:

they that dwell in the land of the shadow of death, upon them hath the light shined.

Our Angels

2011-09-29T00:14:00.000-07:00

Along our journey we have seen angels.

Today an angel got the blood out of Bradley for testing.

She's a great friend.

And she thought of a way to get blood from him without doing a draw.

He's not a bleeder. The blood doesn't come out once they get the vein.

And she thought of a way to run the test the Doc had ordered without doing a draw.

It has been a huge relief.

Another angel was Bradley's Doc in the NICU.

She genuinely loves Bradley.

She saw in him what the world doesn't see.

She saw how beautiful he really is.

She saved his life.

Another angel was the surgeon who saved Bradley's life twice.

He placed Bradley's g-tube.

He got a surgically inserted access line into him when he was so close to dying.

Pediatric surgeons are AMAZING people.

He drew a 3x3 inch diagram of the g-tube surgery, and then he said, "this is actual size"

A close friend with a son with similar health problems as Bradley has been yet another angel.

Her son is sixteen now.

She prepared me for the Doc suggesting a g-tube surgery.

She told me not to fear.

She's still telling me that.

Even though I'd like to curl up in a ball when I think about the future.

A handful of nurses were our angels too.

They taught me how to take care of Bradley.

They would bend the rules so I could hold him more.

So I could nurse him.

They held him when I could not.

They sang to him and called him bo-bo.

The angels among us are OURSELVES.

Sometimes we will be someone's angel.

This IS God's plan.

That is why he put us here TOGETHER.

ANGELS AMONG US?

INDEED!

Miracles DO Happen

2011-09-27T18:32:00.000-07:00

Today Bradley and I went to physical therapy.

We are seeing the same speech therapist Bradley saw in the NICU.

As I sat the car seat down the therapist said, "He LOOKS SO GOOD!"

"If he wasn't with you, I wouldn't know that was the same baby!"

I cannot tell you how happy that made me.

I'm so proud of Bradley!

The fact that he can suck formula thickened

with rice cereal

to the consistency of honey

through a Y cut nipple!

And he eats this way 95% of the time!

But I'm realizing that his strength is coming from God and all the prayers on his behalf.

THIS IS A MIRACLE!

At 35 calories an ounce, it is no wonder he has grown from this:

To this:

And I KNOW he WILL get his g-tube removed someday.

The body is miraculous and because of Gods GRACE it can heal.

You are witnessing a miracle.

Doubt

2011-09-24T20:16:00.000-07:00

This week was a trial.

Most mornings I woke overwhelmed by the day.

Bradley's care involves SO much work.

He requires SO much time and attention.

AND he is my fourth.

And I worry SO much about the future!

And I SO BADLY want the body I had planned on Bradley having.

All of these feelings are from Satan.

He wants to discourage me.

He wants to mess me up.

He wants me to focus on what I don't have!

I'm CHOOSING to focus on what I DO HAVE!

I am so grateful for HOPE!

I am so grateful for BLESSINGS!

I am so grateful for the ATONEMENT!

I am so grateful for FRIENDSHIP!

I am so grateful for BRADLEY!

I am so grateful for INSURANCE!

I am so grateful for DOCTORS!

I am so grateful for the G-TUBE!

I am so grateful for CALCIUM!

I am so grateful for THERAPY!

I am so grateful for RICE CEREAL!

I am so grateful for FAMILY!

I am so grateful for STRENGTH!

I am so grateful for PRAYER!

I am so grateful for CHILDREN!

I am so grateful for JESUS!

And as a good friend told me this afternoon:

"IT COULD ALWAYS BE WORSE!"

And I don't know the EXACT reason why God sent me Bradley.

I don't know if I ever will.

But this is a great quote to end with:

“Don’t vex your mind by trying to explain the suffering you have to endure in this life.

Don’t think that God is punishing you or disciplining you or that he has rejected you.

Even in the midst of your suffering, you are in his kingdom.

You are always his child, and he has his protecting arms around you.

Does a child understand everything his father does?

No, but he can confidently nestle in his father’s arms and feel perfect happiness,

even while tears glisten in his eyes, because he is his father’s child.”

-Dr. Albert Schweitzer

Joy

2011-09-22T19:12:00.000-07:00

Tonight I made dinner for the first time in months.

I turned on the radio.

All the kids were dancing.

Even Bradley.

And I looked at all four of them and felt complete.

It is such a joy to have children.

Even though one has had a rough start and an unsure future, I am so grateful for him.

I can see him bringing lots of light into our lives.

He already has.

Even if the world thinks his life is a failure.

He has been a success in mine.

Who cares what people think!

Which, by the way, is a lesson I have had to learn OVER, and OVER in this life.

And the biggest teacher of this lesson is now here in my home with me.

And he's teaching me a lot.

On A Quest

2011-09-21T19:18:00.000-07:00

Today Bradley went to get his blood drawn for the endocrinologist.

The poor girls at the lab tried for about an hour.

They did not succeed.

And now my poor Bradley has two bruised arms.

The pediatrician is going to try again tomorrow.

The endo has to get his blood so he can tell if Bradley is doing well on his meds.

I've been crying all afternoon.

It has brought back memories from the PICU when they couldn't

get into Bradley's body and he almost died

(read about that here)

http://lifeiswhatyouthinkofit.blogspot.com/2011/08/hospital-part-1.html

Hes a hard stick; as a phlebotomist would say.

And he is my challenge.

At the risk of sounding crazy; I have to tell you the next little story:

Late in the afternoon were sitting in our chair, and I said a little prayer for Bradley.

I know I shouldn't make deals with God,

but I told God that if he would heal my child,

I would raise Bradley to be righteous and do Gods will.

And do you know what God said?

God told me Bradley IS doing his will,

and that Bradley was bring those around his tiny life closer to God.

I have said SO many prayers for my little man, most of which have been answered.

God is real.

He hears our prayers.

He is testing you and me.

Seeing how strong we really are.

Seeing if, through our trials, we will still believe.

And so tomorrow, I will wake up and take him to the Doc and see if they can get into him.

Please God, HELP THOSE HANDS!

Proud to Be Their Mother

2011-09-19T19:38:00.000-07:00

I went to return my hospital grade breast pump today.

The pump isn't cute.

It doesn't smell sweet.

It doesn't coo at me.

So I let my milk dry up and returned it this afternoon.

Plus my insurance covers the formula because he has a g-tube.

I wish I had enough energy to give Bradley only my milk but the reality is I DON'T.

After we returned the pump we stopped at Wendy's.

While in line a man in front of us dropped a quarter and didn't realize it.

Jacob picked it up and handed it back to the man.

The man told Jacob to keep the quarter for being so honest.

Then he complimented me on having such wonderful kids.

A warm feeling came over me as the Holy Ghost again told me that I AM a good Mother.

I am SO SCARED of what the future may hold for my sweet baby.

If he does have something wrong with his brain.

With all of the unknowns in Bradley's future

I take comfort in knowing that he MIGHT NOT NEED to be tested like you and I.

He only needed his body.

And I gave him that.

And if his brain never works right, that will be okay.

His calling and election have been made sure.

I look at Bradley sometimes and wonder if is an exceptional spirit.

If he is, I am LUCKY to be his Mother.

These are choice spirits that Heavenly Father gave Tom and I.

I KNOW IT.

And I am Proud to be their Mother.

I Will Follow God's Plan

2011-09-18T13:19:00.000-07:00

My life is a gift

My life has a plan

My live has a purpose; in heaven it began.

My choice was to come to this lovely home on earth.

And seek for God's light to direct me from birth.

I will follow God's plan for me.

Holding fast to his word and his love.

I will work and I will pray.

I will always walk in his way.

Then I will be happy on earth;

And in my home above.

Childrens Song Book # 164

Mosiah 2

41 And moreover, I would desire that ye should consider on the blessed and ^ahappy state of those that keep the commandments of God. For behold, they are ^bblessed in all things, both temporal and spiritual; and if they hold out ^cfaithful to the end they are received into ^dheaven, that thereby they may dwell with God in a state of never-ending happiness. O remember, remember that these things are true; for the Lord God hath spoken it.

Abraham 3

25 And we will ^aprove them herewith, to see if they will ^bdo all things whatsoever the Lord their God shall command them;

26 And they who ^akeep their first ^bestate shall be added upon; and they who keep not their first estate shall not have glory in the same kingdom with those who keep their first estate; and they who keep their second ^cestate shall have ^dglory added upon their heads for ever and ever.

Embrace It

2011-09-17T10:58:00.000-07:00

Last night while rocking Bradley I was thinking about the day.

And what the Endocrinologist had said.

It doesn't have to be a bad thing if Bradley is different!

If he has a rare syndrome, it's amazing that he has lived.

MY body is amazing that it didn't let him have fetal demise.

HIS body is amazing that he didn't have fetal demise.

We are LUCKY to have Bradley.

And then I was looking at his hands.

They are different than mine.

His middle and ring finger are the same lengths.

His pointer and his pinkie are the same lengths.

That's kinda neat :)

And later while I was getting ready for his midnight feeding my cell phone alarm went off.

The alarm tone is a generic pop dance mix sound.

I started dancing and started singing "It's feeding time" to Bradley.

AND YOU KNOW WHAT HE DID?

He started dancing too!

He was shaking his head back and forth and smiling.

I HAVE NEVER HAD A TWO MONTH OLD DANCE WITH ME.

I doubt most mothers have.

He strikes me as really bright; even with the swallowing thing.

He's cooing and vocalizing.

He makes the most intense eye contact.

I'm tired of hearing people say "sorry" when I tell them about Bradley.
He's unique and there is nothing to be sorry about.
I cannot wait to hear someone say, "You are so LUCKY to have him. He is so special!"

Thank you God for sending us our unique Bradley.

Hypoparathyrodism

2011-09-16T23:52:00.000-07:00

This afternoon Petey the parakeet passed.

He has been sick for sometime and he recently had been so sick he couldn't perch.

Jacob came to tell me Petey was in fact dead with tears in his eyes.

The kids and I wrapped him in a white dish towel and tied it with a red ribbon.

I dug a deep hole behind the cantaloupe vine.

All the kids held him as they lowered him into his grave.

Charlotte said a prayer.

It was so somber.

And afterwards they kept asking if we could go get another bird

and I really don't want to.

My life is so busy right now.

I'm so exhausted in the evenings with EVERYTHIING I have to do to take care of our Bradley.

Follow up appointments top the list.

Today we saw a pediatric endocrinologist.

The endocrinologist said Bradley has infantile hypoparathyroidism.

Which means he will have to take large dosages of calcium for the rest of his life.

I asked the doc if it was a result of in uterine growth restriction.

The doc said they were unrelated.

I asked if he thought Bradley could have a chromosomal syndrome.

He said he could.

My eyes filled with tears as I told him that's not what I wanted to hear.

He put his hands on my knees and said, "We have to deal with what God has given us."

I'm sure I'm not the first Mommy he has comforted about a sick child.

I walked out of the office overwhelmed by what may be in our future...

And as I've been told from the time Bradley was born

WE WILL HAVE TO WAIT AND SEE!

IUGR

2011-09-15T20:26:00.000-07:00

It's a little insulting when Doctors say your baby looks dysmorphic.

Now that he is home with me and bright eyed and cooing,

I'm pretty sure that his tubie and his calcium problems ARE his ONLY problems.

And while I'm going to do follow ups with ALL the physicians INCLUDING the geneticist,

I don't think they are going to find much.

Yes, he does look like an old man, so do LOTS of other newborn boys.

I read my discharge papers today and they say IUGR.

In Uterine Growth Restriction

For along time I thought that if he got this diagnosis it was my fault...

But IT IS NOT!

He stopped growing for reasons unknown, not because of anything I did.
And I know being induced or having a c-section would NOT have changed any of this.
It may have made things worse if he had had lung problems.

I measured 37 1/2, from then until the end.

And I wasn't dilating at 42 weeks like we expected.

And we kept second guessing ourselves, thinking perhaps the due date was off.

Now, looking back, I'm pretty sure he stopped growing at 37 weeks.

Perhaps it is because he has an endocrine disorder.

He does have hypocalcemia and a sluggish thyroid.
And I feel like the Docs in the NICU were focusing on the wrong things.
Not that that was their fault.
They stabilized him, and he came home like we all wanted.
And now it will be in his follow-ups that we will find the truth.

TIME TO WORK!

2011-09-13T22:40:00.000-07:00

He's been home 12 hours now.

He's currently sleeping and on his continuous enthral feeding.
(that's the pump through his g-tube)

Babies are work; Bradley is LOTS OF WORK!

He's on three meds.
Two are once in 24 hours.

One is every 8 hours.
(3 times a day)

Then there are the bottles.

During the day he can have honey thick through a cross cut nipple bottle.

The recipe is 1oz formula to a tablespoon rice cereal.

He gets 2oz of that through his bottle, 4 times a day.

The bottle is REALLY thick.
It is for therapeutic reasons; to maintain his sucking abilities.

Sometimes he can do the whole two ounces, sometimes not.

Whatever he doesn't finish I give him the equivalent of,
but in breast milk or formula that was not thickened with rice,
through his g-tube.

(rice cereal cannot go down his tube; it's for liquids)

So I mix breast milk or formula to make it 24 cals.
Breast milk is 20 calories an ounce.

To make it 24 calories an ounce you mix 100mls. with a teaspoon formula powder.
Yeah, that's after I pump it, label it, freeze it, defrost it, measure it, then warm it.

To make formula 24 cals you mix 5oz water to three scoops of formula.

THAT'S JUST DURING THE DAY!

The night time is a little easier.

I mix 250mls to 24 calories and put 1/2 of it into an

IV type bag and then set my pump for his night feeding.

4 hours later I have to warm the remaining night time feed and dump it in the bag and reset the pump.

And all of these bottles that I use to mix and feed have to be washed; sometimes sterilized.

And the syringes that I use to administer the meds, have to be washed too.

And I do ALL OF THIS whilst changing diapers, feeding big kids, getting big kids to school,
doing laundry, cleaning house, doing homework, sterilizing my house with bleach,

and making sure everyone isn't feeling ignored.

And don't forget about his follow-up appointments, Nevada early intervention, and therapy!

Like I said, Bradley is LOTS OF WORK.

Refining Fire

2011-09-10T00:49:00.000-07:00

Into every life there come the painful, despairing days of adversity and buffeting.

There seems to be a full measure of anguish, sorrow, and often heartbreak for everyone,

including those who earnestly seek to do right and be faithful.

The thorns that prick, that stick in the flesh, that hurt,

often change lives which seem robbed of significance and hope.

This change comes about through a refining process which often seems cruel and hard.

In this way the soul can become like soft clay in the hands of the Master in

building lives of faith, usefulness, beauty, and strength.

For some, the refiner’s fire causes a loss of belief and faith in God,

but those with eternal perspective understand that such refining is part of the perfection process.

James E. Faust

If there were no night, we would not appreciate the day,

nor could we see the stars and the vastness of the heavens.

We must partake of the bitter with the sweet.

There is a divine purpose in the adversities we encounter every day.

They prepare, they purge, they purify, and thus they bless.

When we pluck the roses, we find we often cannot avoid the thorns which spring from the same stem.

James E. Faust

How beautiful it is to have a healthy child.

I have taken it for granted TOO MANY times.

I'm sure, from now on, everytime Bradley coughs I will be worried!

This is the life of a mother.

We sign up for some heavy stuff when we sign up to be parents.

I feel like I'm starting to come out of the fire.

Quite honestly I still feel a little beat up.

But I know one day I will look back and think,

Wow, I made it through that

AND IT MADE ME STRONGER!

Life and Death

2011-09-09T19:07:00.000-07:00

Picture taken at home when Bradley was one week old ♥

There is a family next to us in the NICU who's baby is not doing good.
The family has all come in because they think the baby may die.

It makes me so sad to see his Mommy. She looks so sad.
Empty belly. Hair a wreck. Tear stained cheeks.

Bradley's Doctor today told me she does follow up with pediatric hospice only.
It took me a while to realize what that meant.
She takes care of babies and children who are dying.
What a place I have been at for the last five weeks!
The NICU and the Maternity ward are the floors with the most hope in the hospital.
The other floors are full of the sick and dying.

Death is so hard on us left behind.
My wonderful aunt Terry passed yesterday morning. I still hear her laugh in my head.
She was such a wonderful woman. So lovely and so sweet. Such a good Mother.

This summer we've had so many loved ones pass.
Both our dear Grandpas. Two of our former Bishops. Tom's uncle. My aunt.
And with everything I've dealt with with Bradley, I have had one crazy and emotional summer.

But all this death has made me appreciate life more.

I remember leaving Bradley one night at the PICU when we thought he might
die and coming home to my bed and holding Charlotte for a VERY LONG time.
We didn't kick her out of our bed that night.

I look deeper into my children's eyes now and realize what a miracle they are.

How wonderful it is to have them in this life.

How wonderful that God has entrusted them to me.

And when Bradley finally does come home,
I imagine curling up in bed with him for a VERY LONG TIME.

Thank you God for giving me Madeleine, Jacob, Charlotte, and Bradley.
And thank you for preserving our lives.

I DID FEED MY BABY!

2011-09-07T21:38:00.000-07:00

I'm an over-feeder; I admit it.

My poor children!

I have hypoglycemia and so I think everyone around me is having drops in their blood sugar too.

Two weeks before Bradley was due my Sister and her family came to stay with us.

We eat about 5 meals a day because of my blood sugar problem.

By the end of her third night here, her family was crying because their stomachs were SO FULL!

I know I eat more often than most people because I feel like crap if I don't.

When I became a mother, my kids started eating on my schedule too.

Madeleine hates how often we eat.

Jacob doubled his birth weight at 1 month.

And Charlotte is hypoglycemic too, so she doesn't mind :)

So when Bradley got admitted for failure to thrive and the doctors in the

PICU said we had just gotten behind on feedings that didn't make sense to me.

I feed my children!

I was shocked that the NICU only feeds babies 8 times in a 24 hour period.

I feed my babies 9-12 times in 24 hours.

Like I said, I'm an over-feeder! LOL!

Today we learned that WHEN Bradley WAS admitted to the hospital his electrolytes were NOT off.

He was only low on calcium, which has been a constant problem he has had since being admitted.

And so we HADN'T gotten behind on feedings.

He had stopped sucking because he was lacking calcium which made his muscles stop working...

which makes so much more sense :)

God's Son2011-09-07T12:08:00.000-07:00
How could the Father tell the world of love and tenderness?
He sent his Son, a newborn babe, with peace and holiness.
How could the Father show the world the pathway we should go?
He sent his Son to walk with men on earth, that we may know.
How could the Father tell the world of sacrifice, of death?
He sent his Son to die for us and rise with living breath.
What does the Father ask of us? What do the scriptures say?
Have faith, have hope, live like his Son, help others on their way.
What does he ask? Live like his Son.
-He Sent His Son, Children's Songbook, pg.34



Bradley is teaching me more about the atonement.
Honestly, I haven't had to rely on the atonement much in my life.
My life has always gone according to plan. 
My life has been pretty easy. 
I've not had major sins. 
I've not had bad things happen to me. 
And now this. 
Going through the unknowns of Bradley's condition.
 Waiting and seeing. 
Wondering if we have caused his issues. 
Wondering what his future holds.
Wondering why his body doesn't work. 
Seeing the pain Bradley has gone through. 
Having a broken heart from not being with him.
Laying in bed at night and wondering why he cannot be with me. 
Losing the ability to feed him like a normal infant. 
All of this has taught me more about the pain the Savior felt when he atoned for me.
When he atoned for Bradley. 
When he atoned for all mankind. 
I know that all this hurt I feel, 
and all the time I've lost with Bradley will be made up to us one day. 
One day we will get back all we have lost. 
I'm looking forward to that day. 

Dreams Come True

2011-09-05T19:58:00.000-07:00

His new crib! He can regulate his own temps now.

I had a dream about Bradley before he went into the hospital. Before I knew he was sick.

In the dream, he was a big 9 month old baby.

We were sitting on my chair in the front room. He was wearing button up pj's.

He had something odd on his face that went up around his ear.

I was holding him on my lap and looking at his face trying to understand what was on it.

Then Jacob came to my feet and Bradley rolled off my lap onto the floor and was playing with Jacob.

They were wrestling like boys do.

I didn't know what was on his face when I woke up.

But after being admitted to the PICU, I had the dream again, and I realized what it was!

It was a gavage feeding tube coming out of his nose and resting above his ear.

I now have millions of pictures of him with gavage tubes taped to his face.

And now he has a feeding tube in his tummy.

And I'm pretty sure that was God's way of preparing me for some of his feeding issues.

Now I hope the part about the boys wrestling together comes true too!

Live Life

2011-09-04T18:47:00.000-07:00

When I go to the hospital, and hold Bradley, I feel God around us.

He is God's son. He was created in God's perfect image. So was I.

But our bodies are VERY different.

I worry his is weak.

And I know that someday
IF NOT IN THIS LIFE
his body WILL be made strong.

But what about THIS LIFE?

I would love it if he did GREAT things;

But I will be REALLY happy if he does normal things too.

Is he going to walk?

Is he going to talk?

Will he feel the warm sun on his face and know that God loves him?

Will he be mad about the body God gave him?

Will others make fun of him because of the body God gave him?

Will he feel true love and passion?

Will he ever have a family of his own?

Will he look into his child's eyes and see Gods?

Will he hear his children play?

I gave him life, so he could live it.

Please God, let him live it.

The Plan

2011-09-03T15:41:00.000-07:00

I had a plan.

This was my plan:

It was so perfect. Two girls. Two boys.

I had everything I had ever wanted; exactly when I wanted it.

My plan did not include this:

Or this:

OR THIS:

But I guess my plan has ended and now God is taking over.

And the one who really IS in control, has show that he is.

And all I can do is sit here and hope that I can deal with what he decides to do.

O how great the plan of our God! For on the other hand, the paradise of God must deliver up the spirits of the righteous, and the grave deliver up the body of the righteous; and the spirit and the body is restored to itself again, and all men become incorruptible, and immortal, and they are living souls, having a perfect knowledge like unto us in the flesh, save it be that our knowledge shall be perfect.

2 Nephi 9:13

I have always had a healthy body. So has Tom. We made three REALLY healthy bodies.

And then we made Bradley's. And I don't blame myself for his body being the way it is.

But I HOPE that one day it will be made up to him and that he will get his perfect body.

The poor baby.

In a hospital bed.

And when he gets out of that bed, I know for sure he will not be fed the way a normal infant is.

And I know for sure he will always have to take specific minerals that his body lacks.

And I don't know much past that.

And I HOPE that there is not more than that.

I'm understanding what it means to HOPE.

Nobody's Fault

2011-09-01T12:48:00.000-07:00

Today a neighbor stopped me and asked about the baby and if it was a girl or boy?

I told her about Bradley and his little stay at the hospital.

She looked at me puzzled and said

"Why didn't your doctor know what was going on with the baby?"

I said "Well I opted out of all testing."

Then she said "I bet you are sorry about that now."

I said "No I'm not. He was already created. What would it have mattered if we had testing?"

I've been thinking about this all day and thinking about Bradley and

what people are going to think when he grows up.

I know someone, who doesn't know me, will think:

"That is Mary and she has her babies at home

and her last baby was messed up because SHE didn't get him to the hospital quick enough"

I guess we could blame this on me. I DID OPT OUT OF TESTING.

Or I guess we could blame Tom and I for having sex.

Or we could blame my midwife because she didn't send me to the hospital to be induced.

Or we could blame the pediatrician because he didn't send him to the hospital for testing.

Or I guess we could blame this on God, because he created him.

SEE HOW SILLY IT IS TO BLAME SOMEONE.

WHY DO YOU NEED TO BLAME IT ON SOMEONE?

He is here now.

Bradley keeps going and God obviously wants him to.

So why does it have to be someones fault?

IT'S NO ONE'S FAULT PEOPLE.

QUIT TRYING TO BLAME IT ON SOMEONE, okay?

Using his Tubie

2011-08-31T17:34:00.000-07:00

Well that's how we feed him now. I'm not sure if I love it or not.
I'm actually a little jealous of it.
I wish nursing him wasn't a hazard to his health.

He is from Tom and I.

He is our child.

He is God's child.

And I love him.

And I wish he didn't have to have this right now.

I wish I could just nurse him like my other babies.

This was not exactly what I had planned.

Surgery Day!

2011-08-31T17:10:00.000-07:00

Bradley's surgery was scheduled on the first day of school.

School started at 9am and the surgery was at 10:30am.

Madeleine was starting Second grade; Jacob was starting Kindergarten.

We live in a very hot place, and Jacob was sweating from the heat

and I thought the drop of sweat was a tear.

But he told me later it was NOT.

Bradley was very comfy when we got there.

Then I told him what we were doing and that woke him up!

I wanted pictures and videos just in case.

I signed papers that said I wouldn't hold them liable if he died and so it was on my mind....

But the surgery went perfectly! Finished in an hour and a half!

And he came back looking like this

And I could not stop looking at this very anticipated new part of his tiny body.

The G-tube

Fingers crossed it works like it should!

My Broken Baby

2011-08-31T10:13:00.000-07:00

I was feeling lots of stress and worrying about my broken baby and Jacobs first day of school and how Jacobs would always remember his baby brother as

BROKEN and having surgery on his first day of kindergarten and how much that sucked.

I couldn't sleep and I was blog lurking on blogs of mothers with children who had down syndrome.

And I found this quote:

‎"Christ is building his kingdom with the broken things of earth. People desire only the strong, successful, victorious, and unbroken things in life to build their kingdoms, but God is the God of the unsuccessful – the God of those who have failed. Heaven is being filled with earth’s broken lives, and there is no “bruised reed” (Isa. 42:3) that Christ cannot take and restore to a glorious place of blessing and beauty. He can take a life crushed by pain or sorrow and make it a harp whose music will be total praise. He can lift earth's saddest failure up to heaven's glory." J.R. Miller

LIFE SUCKS SOMETIMES!

I have thought that more than once these last six weeks!

And I worried that Jacob and Bradley would never really get to play together.

And that Bradley might just become an angel in our efforts to fix his tiny body.

And again I KNEW, that that would be okay.

That we were sealed to him eternally and he would be ours forever.

And I would get to raise him sometime later.

And that I had done the best I could, and given him the body he came here to get.

I knew that Jesus was there at the NICU with Bradley

and that he would be in his surgery the next day and would hold Bradley when I couldn't.

Scheduling Surgery

2011-08-31T09:59:00.000-07:00

The next day the doctor came to talk about the results of his swallow study.

She said Bradley needed to be given the consistency of honey
if he was going to have any more food orally.
Honey consistency through a nipple is really hard to get through.
Even a cross cut nipple.
It's like drinking a frosty through a straw.
It's 1 tablespoon CRUSHED rice cereal to 1 ounce of formula.
TRY IT AT HOME.
It's like pudding.

She said liquids leak into his lungs when he swallows and

it was NOT from an anatomical cause.

It's not like his throat is not working. All his parts are good.

She said it is something neurological that is causing milk to go to his lungs when he swallows.

This took me back...HIS BRAIN? THE PROBLEM IS IN HIS BRAIN!?!

But he was so beautiful and he looked so normal!

The Doctor said he would need a surgery to place a feeding tube directly into his
tummy because he HAS to get milk, he's an infant!
Infants need milk in their tummy's often, and he would tire quickly and stop eating if all of his bottles were like drinking frostys through straws :)

She also talked about tightening his stomach around his esophagus because of reflux

...and I didn't really understand what that meant.

That afternoon I was napping and I suddenly woke up.
I remembered the swallow study.
The reflux that reached his lungs and spilled over into them.

They were sending milk down his gavage tube and

HE WOULD BE REFLUXING IT SIX MINUTES LATER INTO HIS LUNGS!

I realized he needed this surgery SOON!

Just as I had that thought the doctor called from the hospital.

She was thinking the same thing.

I had been inspired.

I told her to schedule surgery for as soon as they could.
It was Friday afternoon and she said the soonest would be Monday.

And when I got off the phone I remembered that

Monday was the first day of school for my two oldest.

We were going to have a very busy day!

The Swallow Study

2011-08-31T09:41:00.000-07:00

I called at 10am while I pumped.

The nurse said Bradley had had some trouble eating in the night and was coughing a lot!

The speech pathologist came in for his 8am feeding to try and give him a bottle.

He could not take it because he was coughing SO MUCH.

They put the gavage tube back in and told me to come down and see him.

When I got in I picked him up and held him and took some pictures.

Then the doctor came in to talk with me about his feeding issues.

She said that he needed to have a swallow study done.

She said they were thinking perhaps he was getting some of his milk into his lungs when he ate.

They would have to feed him barium and watch it through an xray to see if he was for sure.

So I went down to the xray room with him.

We got there and there was a radiologist, and the speech pathologist.

The speech pathologist mixed up three different bottles of barium in different consistencies.

The first was the consistency of milk.

The second was the consistency of nectar.

The third was the consistency of honey.

They started with the first. I saw a little leak down his airway into his lungs.

The speech pathologist pointed to the screen and said - "see it"

Then they tried the second bottle and it happened again.

Then they tried the third and this time it didn't go down his lungs.

AND it was VERY thick and it was harder for him to get through the nipple. BUT HE DID!

Then the radiologist moved the camera to his stomach which was black because it was full of barium.

And we waited.

And about two minutes later some came back up.

And about two minutes later more came back up.

And about two minutes later more came back up and this time it reached

his lungs and spilled into them.

The speech pathologist said, "he's aspirating his reflux too"

And I knew that could not be good.

The speech pathologist came over to me and told me the results.

For now he could only have formula thickened to the consistency of honey through his bottle.

And that I could not nurse him because he would get it into his lungs.

And I left and realized that Bradley and I would never nurse again.

And I cried most of the way home.

Normal Baby

2011-08-31T09:21:00.000-07:00

They gave him antibiotics and for the first time he started look like a normal baby.

And I would go and hold him and wonder why he had come to the hospital.

They weighed him every night and on this night he weighed 5lbs 10oz.

He had gained a pound and two ounces since birth!

He was so cute and I just wanted to bring him home :)

....And I didn't know that the next day would be so hard....

Bottles

2011-08-31T09:04:00.000-07:00

When we got into the NICU the nurses said we needed to feed Bradley

though a bottle so that they could monitor how he ate and how much he ate.

I was fine with this and was happy to show them that he was having problems eating,

but that it was gradual.

But it meant I needed to pump. Regularly. To get up to 2oz ever three hours I started pumping everyhour. I had almost lost my supply and it was a lot of work to get it back.

Trying to increase my milk supply.

Bradley's tiny overpoked feet.

Love

Sick

Kids came for visits.
We all loved on him and woke him up, but I know he was glad to see us.

One day while I was rubbing his feet and feeling so helpless I realized

he needed me to come rub him with MY loving touch.

The nurses have to much to do to be able to lovingly touch each baby.

They only touch when they have to do something.

Everytime other people touched him it was usually to draw blood,

or give him an new IV or test his blood sugars.

HE NEEDED OUR LOVING TOUCH...

AND HE COULD TELL THE DIFFRENCE BETWEEN US AND THE NURSES.

SO I KEPT GOING TO GIVE HIM MY LOVING TOUCH AND

TO LET HIM KNOW THAT PEOPLE STILL LOVED HIM.

And sometimes I was at the right time to give him a bottle.

And he would drink the WHOLE thing in 5 minutes.

But he got infections twice while they were feeding him with the bottles and

I was glad they were finally seeing what I had been talking about.

BUT I hated seeing Bradley sick and hearing that it was

mysterious why he would get sick after eating for a few days.

And this puzzled me.

The NICU

2011-08-30T21:49:00.001-07:00

The NICU grows babies.

Babies born preterm need their methods of high calorie feeds and dark womb like rooms.

But remember, BRADLEY came at 44 weeks! NOT 34!

It is really a shame how many babies come before they are ready
because of induction and c-section and then HAVE to spend time in the NICU,

but that is really a whole other THING :)

TANGENT!

And so we were moved to the

NICU and every nurse had their theory about our Bradley.

His first nurse said he had an infection from the meconium
that surrounded him at birth and had he come at the hospital
they would have done a better job of getting it out of his lungs.
She told me to go home, get some rest and she would grow my baby.

The next nurse was Joanne.

She was a sweet lady from Tennessee.

She had been born at home.

She believed in breast milk and nursing.

She let me nurse Bradley twice.

I will always be grateful to her for that.

It would be the last time he ever nursed.

The next nurse was Chuck.

He was a big burley man with tatoos and a fu-man-chu.

He told me I needed to drink a beer to up my milk production.

He told Tom and I that CPS could come take our

children for Bradley being diagnosed with failure to thrive.

He also said home birth was fine

but we should have done something to get him out

before 44 weeks and that our midwife was crazy for letting him cook that long.

He believes babies lose weight the longer they cook and

that we had in fact hurt Bradley by not coming to the hospital to be induced.

Several times that I left Bradley with Chuck I didn't understand how

Chuck could grow Bradley but I could not.

The last day that Chuck was our nurse the Doctor came in and talked about Bradley with me.
He had been in the NICU for four days and was starting to show signs of an infection AGAIN!

He was having trouble eating and Chuck had been putting his food in his gavage tube.
I knew he was starting to show a reaction to his food like he had before.

BUT IT WASN'T AN ALLERGY BECAUSE IT WAS A DELAYED REACTION.

Allergic reactions come on sudden or soon after.

Allergy symptoms include, vomiting, blood in the stools, anaphylaxis.

None of which Bradley had ever had.

The Doctor in the NICU thought there was something more to Bradley that would explain WHY he didn't come till 44 weeks and why he was sooooooo small at birth.

So she sent out tests for micro deletions and micro duplications of Bradley's chromosomes.

And he got another infection.

And he got another spinal tap.

And he got another blood transfusion.

And his belly got distended.

And his intestines twisted.

And Chuck used a bulb syringe to keep Bradley's binki in his mouth.

And while Chuck did the best swaddling job I had ever seen, I knew he was wrong about us.

I WAS A GOOD MOM.

I HAD DONE EVERYTHING I COULD TO HELP BRADLEY.

BRADLEY HAD JUST STOPPED WORKING ON ME!

And I think Chuck and the other nurses were starting to see that.

Metabolic Disorder???

2011-08-30T21:34:00.000-07:00

He was in the PICU for the next few days. We never really found out what was wrong with him and the nurses and all the specialist that came in just kept saying we had a very sick little boy.

They started feeding him my breast milk which I had been sporadically pumping.

When you are being told your son is going to die you don't feel like pumping much.

They fed him in a gavage tube.

He never woke up while we were in the PICU and the nurses and doctors were puzzled by this.

When they finally got blood out of his belly button line they sent it for some testing.
The doctors were convinced he had a metabolic disorder.
The had also sent out some initial chromosomal stuff.
He was technically eating again which had me worried that he would some
how reject the feedings they were giving him.
But I didn't know how he would if it was being forced down a tube to his tummy.
And he started improving and he was tolerating feedings.
And so five days after being admitted to the PICU we were moved to the NICU because they would be better at getting my baby to gain weight....and I thought perhaps he did just need to get fat and maybe we could be sent home in a week.

Bradley is in the Hospital: Part 2

2011-08-30T21:02:00.000-07:00

After they got the surgically inserted line into him he came back looking like this.

The line was in his belly button and they told us that it could close in few days because it

was in a vein that only newborns have.

I went home that night so exhausted and thought about death and how close we had come to it!

I read Tom's patriarchal blessing that night and re-read the paragraph about his family. It says:

"Thomas, you will meet and become acquainted with a beautiful young lady who has been prepared for you to a wife and helpmate. You will take her to the House of the Lord and there, under the authority of the priesthood, be sealed together to form a new eternal family unit through whom some of your Father-in-Heaven's choice spirit children will be given the opportunity of mortality...You will also need to provide strength, council and wisdom to help the members of your family deal with the problems they will encounter in their lives."

All of this part seemed so pertinent now!

I re-read

"will be given the OPPORTUNITY of mortality"

over and over again.

What did that mean?

Was Bradley going to die?

Is this his opportunity?

Did he just need to come and get his body?

I realized that God loved me.

He had a plan for me.

I was meant to go through this right now.

God loved Bradley.

AND THAT WE WOULD HAVE TO BE PATIENT

TO SEE WHAT HAPPENED WITH THIS CHILD OF GOD.

Our sweet infant child, teaching us HUGE life lessons.

Bradley is in the Hospital: Part 1

2011-08-30T19:59:00.001-07:00

Bradley was doing good after his birth. He was eating. He had gotten my milk to come in.

But I felt a strange nagging feeling that something was not right with him.

I had a hard time when anyone would ask me about his weight or how he was doing.

My husband, my Mom, my midwife, and my pediatrician kept reassuring me

that everything looked fine with him, he was just a small baby.

I was reassured by the fact that he was eating really good.

On Wednesday August 3, he ate every hour,

which is typical for a baby that is trying to get more milk.

The next day he slowed to every three hours and had a very long nap in the afternoon.

That night he was up all night, crying, and very unhappy.

The next day he ate less.
The next night the same as before.

Saturday night, after not sleeping much,
Tom took Bradley downstairs and tried to force him
to take a bottle with formula (which he was not a fan of) while I slept.

At 4am Tom brought Bradley back to me,
telling me he hadn't slept much or eaten much for him either.
Tom said we should probably take him to the Doctor in the morning.

Bradley cried until 6am.

I called my Mom and cried to her, I told her something was not right with
Bradley and he had not eaten a full feeding since 6pm before we went to bed.

As I was on the phone with her he finally took the bottle and drank 2oz.

Mom and I talked about it and I realized he had eaten only two real feedings in 24 hours.

I had been trying to drip breast milk or formula into his mouth and he would not suck.

I also realized he hadn't slept in 36 hours. I decided he did need to go to the Doctor.

My doctor is open on Sundays so I called and got him in at 9am.

When we got to the Doctor, they weighed him and he'd lost an ounce.

The Doctor came and looked at him and said he needed to go to the

hospital if he wouldn't suck and he had lost weight.

Dr. Levin said Bradley didn't have any reserves to not be eating.

This was the last picture I took of Bradley at home.

This is a picture I took with my cell phone in the Emergency room.

They got one IV in him. Took blood, did a spinal tap, and took some urine through a catheter.

They said he was showing signs of infection because of his low temps.

He was admitted for failure to thrive and hypothermia.

They admitted him to the Pediatric ICU, because we had come from outside the hospital

and he couldn't take outside infections to the NICU.

We got up to the room, meet the nurse and talked with the
Doctors who all could not believe my story about being
44 weeks pregnant and having a 4lb 8oz baby.

The nurse said they would work on stabilizing him

and he'd probably go to the pediatrics floor in a few days to fatten him up.

They hydrated him with an IV and put some reflux medicine in his tummy and before I left he took a bottle from the nurse. I was so happy to see him eat!
The nurse encouraged us to go home and get some rest.
I was EXHAUSTED.
We left and came home and slept 12 hours.

IT WAS WONDERFUL!

We decided to go check on our other kids who were with Grandma.
They were doing fine and Grandma said she could keep them so we could go see Bradley.
As we drove to the hospital, I called to check on him.
The nurse said Bradley had had a rough night and had stopped breathing.
They had put him in an incubator to maintain his temps better.

They also needed us to sign a consent to try to get an

PICC line into him to get some blood out of him for testing.

I told her we'd be right there!

When we got there he looked like this.

I put my camera in the door of the incubator to get this shot of his face.

They tried for the next 24 hours to get a PICC or a CICC line into him to get blood.

They never could.

He was showing signs of infections.
And his levels were all very out of balance.

They were having to intibated him because his breathing was so erratic.
We thought he was going to die and the nurses and doctors did too.

It was one of the scariest things I had EVER been through.

The doctors requested we come back to the hospital to sign for a surgically inserted access line.

They told us this would be our last chance to get access into this baby
and that after that they could do no more for him.
His breathing tube had come out and the nurse said I could come and hold him ONE LAST TIME....

I realized I hadn't ever take a picture holding him and I wanted one.

The nurse took this picture of me holding him and I could not stop crying for the pictures.

The pediatric surgeon came in and went over the risks of his surgery.

The surgeon said that this was his last chance to get any help from them and that

our baby would die if he couldn't get this line in.

He also said that our baby had a VERY HIGH chance of bleeding to death because he wasn't clotting very well and that we should know that there may be a chance he could die from bleeding to death.

Tom and I could not stop crying.

I felt like he was going to die.

We sang to him and rubbed his little hands and feet and told him we loved him.
I hugged Tom and told Tom that he would be ours forever and it didn't matter if he died.
Then they took him.
And it was so quiet. And all I could do was go pump.

Tom and I went into the pumping room and talked about a funeral, and when we would do it.

I talked about burying him in his blessing outfit.

And then we just cried. It was the saddest I HAVE EVER FELT!
After I was done we went back to Bradley's room.

We were still crying and talking.
AND THEN THE NURSE SHOUTED
"THEY GOT THE LINE!"

They got the line? Did we hear that right?
I asked her if I'd heard her right, she assured me he was fine and
he was going to return from surgery in a moment.
And then he was back.

Out of it still, but back and still ALIVE!
NOW HE COULD HAVE A BLOOD TRANSFUSION AND GET BLOOD OUT FOR TESTING.
They finally got blood out of him on Wednesday, 4 days after we were admitted.
It had been a very long 4 days.

That night when we got home,

I was going through some dirty laundry and

I found a little hat of Bradley's in my dirty clothes, that he had worn.

I sat and smelled it for a while.

That familar scent of my baby.

And cried.

I put the hat in a special place and told Tom he could never-ever wash it.

Bradley's Birth Story

2011-07-21T22:25:00.000-07:00

He's here!
He came yesterday on July 20th, 2011 at 5:30 am.

I WAS originally due on June 22.
He was almost a WHOLE month late!

He had the signs of being overdue.

His skin was peeling, he has long fingernails,

He was meconium stained from being in a bag of meconium filled water,

and the cord was around his neck

(which none of my other kids have ever had)

Labor finally started on it's own and on July 19th.
At 3pm I was dilated to a three almost a four.

Tom and I stopped, ate dinner
and took clothes over to the kids who were staying at Grandma's overnight.

The labor was different from Charlotte's.
Each contraction was deeper, harder, but shorter.

At 10pm they were gaining intensity.
We called Margie and she arrived by 10:30.
We sat up with her till midnight having several contractions.
At midnight she check and I was 5cm.
She suggested we all get some sleep and that we'd see how it progressed by morning.

She stayed on Madeleine's bed.

At 4am they were getting really, really hard and I was crying and could not sleep.
She came into the room and check and said I was at a seven.
She suggested that I push and grunt and see if it would open me up more.
I sat on the birth ball and paced and sat on the toilet and paced some more.
Then suddenly I felt him come down.
I knew he was coming.
I told Margie he was coming.
I held onto Tom's waist, and while standing he was born into Margie's hands.

Margie exclaimed "oh my, this is NOT a big baby"

We were expecting a 6-7 pounder.
She said he looked tiny.
I looked and it was a boy as I'd hoped.
They my heart sunk as I looked and him and realized he was SO small.

His skin was also coming off in hunks and he had a greenish-yellow tinge to his skin.

He was less than 3 seconds old so he was still blue.
I got really worried!

Margie had to reassure me he WAS okay, just small.

She weighed him and he was 4lbs 8oz.
It still blows my mind that he is so TINY!

Four weeks overdue and half the size of a normal infant.
Didn't think that would happen!

Bradley Herrick Brinkerhoff

2011-07-21T16:19:00.000-07:00

Bradley Herrick Brinkerhoff

Born July 20th 2011

4lbs 8oz

18 inches

This is our newest and our littlest!

Jacob is happy to have a little brother!

I'm in love!