Our Angels

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

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

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

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

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

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



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

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

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

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!

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

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

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!

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 Son

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

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

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

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:

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

 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?