21 Months Later

Photo's taken September 18, 2013

I've been trying to concentrate on planning our second annual Halloween party and all the fun things I want to do next month with Buggie. Truth is, it's all just a distraction. A distraction from the fact that, yet again, Liam will not be with us for any of the upcoming holidays. Planning things usually helps me keep my mind off of the sadness but it's hit me like a ton of bricks. I can feel depression grabbing my ankle and trying to pull me under the waters I've been trying so hard to keep my head above. I want to do all the things we weren't able to do when Liam was here because he was always too sick. I want them for my daughter. But I also want to do nothing but stay curled up in bead in sweat pants and hide from the world. Every day is a battle. Some days easier than other days. Still I put a smile on my face and continue on even when I don't feel that smile. It'll be two years in December. People will say things like "you need to move on" or "you need to get over it". What they don't understand is there's no moving on from the loss of a child. You carry it in your heart and in your soul until your reunited. There is no moving on. Losing a child is nothing like breaking up with a crappy boyfriend. You feel the loss of a child every day in everything you do. When your walking through the house and your no longer stepping on hotwheel and trains. When your doing the laundry and there clothes are no longer there to be washed. When your making dinner and there's one less person to feed. When you go somewhere fun like the fair and you and your husband turn to look at each other and say that you feel you've forgotten something but you haven't forgotten a thing. Your just missing a child. I wish I could hold my little lamb and tell him how much I love him. I wish I could smother him in kisses and play cars with him. It never goes away.

❤️💙Liam❤️💙

Child loss awareness month is October. Please help spread awareness. If you have an angel, feel free to share their name so we can pray for the when we light our candles on the 15th for the wave of light.

#childlossawareness #cdhawareness #pulmonaryembolism #littlelamb#alwaysmybaby

Letting Go Of The Anger

This post warrants a warning.

It starts out angry. There are statistics.

But I promise you it gets better. That you should keep reading.

Because the end if worth reading.

But it doesn't mean the same unless you read from the beginning.

 

Picture taken May 5, 2014

 

The movies lie.

TV lies.

They show scenes where someone needs CPR.

Most of the time they're able to save the patient.

It happens quickly,

and the patient is fine afterwards.

Life doesn't happen that way.

 

CPR isn't a cure all,

medical miracle.

The patient doesn't miraculously recover within seconds.

 

I find myself angry because I wanted TV to be true.

I wanted to wake up,

and these last almost 21 weeks to have been a nightmare.

That none of this ever happened.

Or that we were back in the hospital,

and they were able to save him.

But that can't happen.

Not unless I'm truly delusional.

And as everyone around me tells me,

I'm not imagining it.

 

Did you know:

Only 23.9% of adult who suffer cardiac arrest while in the hospital,

and receive cpr survive.

40% of children who suffer cardiac arrest while in the hospital,

and receive cpr survive.

Wikipedia says only 15-23% overall survive cardia arrest.

 

According to the US National Library of Medicine,

95% of patients who suffer from a pulmonary embolism,

and have cardiac arrest at the hospital do not survive.

 

They say CPR can be go on for 38 minutes,

and still show favorable brain function after being revived.

The odds of surviving severe brain damage drop 5% per minute.

Death can occur within 4-6 minutes.

 

When Liam was in the ER,

they did CPR for over an hour before stopping.

An hour.

When most doctors call it after 38 to maybe 45 minutes at the longest.

An hour.

Even though Liam would have suffered severe brain damage if he had come back.

They still tried.

Because he was a little boy.

Only 4 years old,

who had an entire life ahead of him to live.

So they tried even when logic told them to stop.

And after they realized he wasn't coming back,

they cried.

They mourned the little boy they couldn't save.

Their hearts broke for the parents whose lives turned upside down.

For the mother whose heart was shattered into a million pieces.

And for that,

there are no words to accurately describe how it felt,

to have a room and hallway full of strangers,

instantly bonded to you.

 

There are a few things I remember from that day.

 

One being that in the midst of all the chaos,

my brain picked out specific noises.

One specific one was when they called a code blue on another patient nearby.

I remember looking around and seeing 30 or more people who didn't move.

I looked at the case manager who was sitting beside me.

He told be there was an adult who coded but that no one wanted to leave.

No one could leave.

No one could stop watching and praying for my son.

It hadn't hit me until that moment how very serious the situation was.

I was being delusionally optimistic.

I thought in my heart and soul that my son would come out of this.

That he would be saved.

I was in shock.

That's when I started making phone calls and texting everyone.

Asking for prayers.

Selfishly asking some to come be by my side,

because I just couldn't go through this alone.

 

The doctor sticks out in my memory as well.

He had been racking his brain on what could possibly be causing this.

He took the time to try to explain to us as he went.

I remember how he looked at me with hope in his eyes,

and he explained how he was sure Liam had a blot clot.

He felt it was the only thing that could of acted as fast as it did.

The problem had been that Liam's veins were so "calcified",

so scarred up from years of IV's and blood draws,

that they weren't able to get an IV into him.

Therefore they couldn't administer they meds he needed to break up the clot.

My husband had been there at this time,

and without looking at each other,

we both told the doctor to do whatever he had to do to save him.

So they put in a bone IV.

They had never heard of a child receiving this adult medication they were going to try.

And they had never heard of it being administered through a bone IV,

but it was our last shot.

Liam's last chance at survival.

It was mere moments later when the doctor was forced to call it.

They had lost the pale weak heartbeat they had gotten.

Before the doctor called it,

he looked me in the eyes.

I could see he'd lost all hope that was there before.

He looked up at the clock and he called time.

He looked at me with a stricken

heartbroken look.

Told me he was sorry and walked closer to the door and stood there.

I was just repeating "no no no".

I watched at those who were working on him,

slowly back away.

How the lady who was doing CPR at that point,

climbed off the gurney,

eyes starring at the ground.

I remember hitting the wall and screaming.

Then running to his side.

I was crying telling him how sorry I was.

At one point I started to become numb.

I looked up and saw the doctor standing outside the room.

I slowly approached him.

I could tell he wasn't sure what to expect from me,

so he was expecting the worst.

I looked at him with tears in my eyes,

and a tear streaked face.

I thanked him for trying everything he could to save my son.

I hugged him.

Then I away,

back to my son.

 

I was told later on that the doctor had to leave the ER floor for a break.

I was told that the loss of Liam was too much for him.

He wasn't a doctor that cries.

ER doctors don't cry.

But he cried.

Several nurses needed breaks as well.

 

I started writing this to vent out all my anger.

To try and work through my pain.

As I wrote this I was able to connect with a greater feeling than angry.

I started feeling thankful.

Blessed even.

When most people would have given up,

this group of amazing people kept trying.

And when they didn't succeed,

they were heartbroken.

They felt the loss of Liam.

It was significant in their hearts.

So even as my son laid there dying,

he changed the world in many strangers eyes.

 

I know that doctor and those nurses will never forget my son.

And that is a gift.

One day I hope that I can share his life with them,

so that they can know his love and his smile,

and remember that more than his passing.

That he was a strong little boy who spent his life fighting,

and by the time he got to them,

he was just too tired to fight anymore.

And that has to be ok.

One day.

 

Picture taken May 2, 2014

 

 

 



April 26 2016

(April 26,2015)

 

I did something today that I haven't done since my son was alive.

I volunteered in his preschool class.

...

...

...

 

You may not recognize it,

but that was HUGE.

 

Every time I had to go in there,

I'd go in before the kids got there.

Then I would sneak out before they all arrived.

 

(April 26 2014)

 

I was scared.

I was nervous.

I was a wreck.

 

There are so many emotions.

 

I saw how far these kids have come.

The two little girls who wouldn't even talk,

and when they did it was Spanish,

they giggled,

laughed,

said hi,

and they talked a lot.

In perfect English.

 

Most the kids got really excited to see me.

Most of the hugged me.

One little boy wrapped his arms around me as I read to them.

He kept saying "I'm hugging you",

and refused to let go.

Several little girls latched onto my arms while in lines.

I had a kid attached to me almost the entire time.

And when they weren't attached,

they followed me around.

 

(April 26 2014)

 

I sat there and watched their morning routine.

I smiled.

I wanted to cry.

I could feel Liam there.

His square sat empty,

but I could feel him there,

participating in everything they were going.

 

I wanted him to be there.

I needed him to be there.

 

I thought maybe if this was a nightmare,

this would be the time I'd wake up.

When I'd look up and see him sitting there in class.

 

But it wasn't a nightmare.

I wasn't asleep.

This was just more reinforcement that this is my reality.

Not a reality I want,

but mine all the same.

 

I know it's not going to change.

I know I won't wake up from this.

I know it's not a nightmare.

But I can't help those little slivers of hope that work their way into my heart.

 

(April 26 2014)

 

I watched as these kids learned.

As they laughed.

As they showed us how far they've come.

I was proud of them.

And I had wondered how far Liam would have come,

if he was still here.

 

It's a parents worst nightmare.

Loosing a child.

Then trying to live without them.

A nightmare I've been so scared I might have to live for so very long now.

I've been scared since my first pregnancy when I miscarried.

I was terrified from the day Liam was born.

I let my guard down in his last 5 months.

I let myself believe he was out of the woods.

I let myself believe that the worst was over.

 

I always say "if I'd only  known".

There are so many things I would have done if I'd only known.

So many things I would have changed.

But I didn't get to know.

 

Why can't we choose our own journeys?

Why can't we go back and change things?

Why can't we have what our hearts truly want?

 

Because that's not how life works.

 

If only that sentence alone could change everything.

How we feel.

How we act.

 

 

 

 

 

 

 



Bright Light

 

Because life is confusing.

It's not perfect.

It's not pretty.

It's ugly and cruel.

 

Except for those little glimpses of light within the darkness.

 

Liam.

My bright light.

My happiness.

My reason.

 

And now it's all gone.

I'm left with only the memories of my bright light.

 

Both my children gave reason to my life in their own way.

 

 

 

Lanie was my rainbow baby after a miscarriage.

I had wanted to be a mom so badly,

and was devastated after the miscarriage.

Lanie brought back my happiness.

 

She was the little girl who wore bows,

smiled for the camera,

and wore dresses to play in the mud.

 

Her imagination trumped all others.

She was the little girl who made huge messes.

 

 

She changed me.

I loved (and still love) her with all my heart.

 

But there was still something missing.

My little boy.

My little lamb.

 

 

His birth wasn't ideal.

His health far from perfect.

But he was my perfect little boy.

 

My little boy who loved his cats.

And his dogs.

His cars.

Football.

NASCAR.

 

 

He was the missing piece.

The missing link.

And I needed him.

 

He was the little boy I always wanted.

And now he's gone.

 

The bond we shared is unlike any other.

Unlike the bond I share with my daughter.

I'd like to think that bond could never be broken.

Even though he's in Heaven.

 

Though his life brought us a lot of heartache.

A lot of stress.

He brought that bright light.

 

Even though he is in Heaven,

his light will still shine in my heart.

In my memories.

 

I know that right now I'm grieving,

but one day my heart will open up again.

Until then I grasp at the small moments of bright light that reach my broken heart.

The light that shines through my daughter,

and through the memories of my son.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My Own Grief

Weeping may endure for a night,

but joy comes in the morning.

Psalm 30:5

 

 

 

Nights are the hardest.

I don't sleep well due to nightmares,

flashbacks,

and physical pain.

 

Nights are quiet and lonely.

That's when the tears come.

I can't stop them.

Though I wish I could some nights.

 

I miss my son more than anything.

 

This bible verse says that joy comes in the morning.

I wish it did.

I wish I could be full of joy

and happy for my family.

But I struggle everyday.

Every minute of every day.

 

I've yet to take a deep breath.

I've yet to smile where it wasn't at least partially forced.

I've yet to have one day where I don't cry.

That's my grief and I own it.

 

I feel so alone in it.

People avoid me.

No one wants to come around the sad lady who lost her son.

It's just too hard for them.

No one wants to come to the house where there are reminders a little boy used to live there.

Its just too sad for them.

 

Too hard for them.

Too sad for them.

 

The problem with being strong for other people,

is eventually they forget how much pain your really in.

They forget how much you need them.

They get lost in their own emotions,

their own grief over your lost son,

that your feelings no longer matter.

And when you can't be strong for the anymore,

because our grief is too much,

they act like your crazy.

Like you don't have a right to feel the way you do.

 

Eventually even the closest of people walk away from you.

Slowly they become more and more busy so you see them less.

They avoid your phone calls,

or talk less.

Even when you want to talk about anything but your grief.

 

Even when the last thing you want to talk about is your grief,

no ones there.

Because just talking to you remind them that you lost your son.

And that's too hard for them.

 

I tried not to be that grieving mother,

who didn't care how it effected others.

Every one's emotions mattered.

Everyone grieved in their own way.

And that was important.

I went out of my way to make sure people understood,

that I understood their grief,

and the importance of it.

 

That was really hard for me.

To care about someone elses pain when I hurt so horribly.

But it was important so I did it.

 

All those people that I comforted,

even though it was too hard for me,

where are they now when its too hard for them?

Not offering the same support for me.

 

Yea my grief lasts longer.

It'll probably never go away.

I lost my son.

The one person I spent 24-7 with.

The little boy I devoted 4 years 5 months and 1 day too.

The little boy I had to be a nurse for.

The little boy that I loved with every fiber of my being.

 

And now I grief alone.

And I don't know how.

 

Tuesday were the worst because it marked the one week anniversary.

Then I started spending the whole day trying to hold it all together,

because Tuesdays shouldn't hold so much power.

That's when Wednesday's became bad.

I spent so much energy keeping it together on Tuesdays,

that I had nothing left on Wednesdays.

I started breaking down emotionally.

It made teaching a kids bible study class difficult.

I realized that I wasn't emotionally ready to not spend Tuesday crying,

and lost in grief.

 

 

Blessed are those who mourn,

for they shall be comforted.

Matthew 5:4

 

 

I have a bad habit of not mourning.

Or of rushing through the grief.

I don't know how to handle it,

because it's not something I can fix.

I have to fix everything,

and I can't fix this.

 

Trying to help others deal with the loss of Liam was like me running away from my own grief.

I didn't want to feel it.

If I made the grief go away then maybe none of this ever really happened.

Maybe my son would still be here,

and this would all have been a nightmare.

 

But its real.

It happened.

And I can't change it.

 

That doesn't make this easier.

It doesn't make anything better.

 

Figuring out how to grieve has been hard.

No one to tell me what I should do.

No one to explain how this works.

 

I have no gravesite to take flowers too.

I couldn't do it.

I couldn't see my son in a casket.

And I couldn't visit him at a cemetery.

So we had him cremated,

and his ashes placed in a beautifully carved wooden "urn".

It depicts God with a grown sheep and holding a baby lamb.

It was perfect for our sweet little lamb.

But I can't even hardly look at it.

There's just a flood of emotions when I do that I can't process.

 

So I stare at his pictures instead.

I see his smiling face.

I remember the day the photo was taken.

I remember the joy.

 

That's all I have left.

 

And I think how cruel life is.

How a small innocent child was born with the odds always stacked against him.

How he never had a chance to live a long,

healthy life.

And I get angry.

And then I remember how he was never even supposed to live this long.

How he was never supposed to survive his first week of life,

let alone ever make it out of the NICU.

And I remember how blessed I felt to have him.

How blessed I was to be the mother of such a strong little boy,

who didn't care about the odds.

And then all the times his pediatrician praised me for how well I cared for him rang through my head.

"If it wasn't for you he wouldn't have lived as long as he did"

"If he's had any other mother he wouldn't have made it"

I always thought it couldn't be true.

Any mother would do what I'm doing.

Any mother wants to see their child healthy and happy.

I'm not dong anything different than any other mother.

 

And then it dawns on me.

I've surrounded myself with other CDH moms on social media.

I created a virtual world where flushing mediports,

and tube feeding was a normal thing.

 

So now what?

Where do I go from here?

Everything used to be planned out.

Almost every minute of every day (and night) came down to a schedule.

Meds.

Tube feeds.

Breathing treatments.

Home therapy.

Doctor appointments.

School pick up and drop off.

 

Now everything is being played by ear.

Things are planned.

There's no strategy for the day or days to come.

I just sit here alone every day until I pick Lanie up from school.

And then I sit here some more.

 

It shouldn't be so hard for me to process.

But the again I shouldn't of had  to say goodbye to my son.

 

 

But those who hope in the Lord will renew their strength.

They will soar on wings like eagles;

They will run and not grow weary,

they will walk and not be faint.

Isiah 40:31



Click Click Click

Those are the sounds of Liam's little tongue.

Sounds that we worked hard to get him to make.

Sounds we weren't sure if he'd ever figure out.

But now,

At 3 years old as he sits besides me,

smiling bigger with every click of his tongue.

I of course smile back because,

duh I'm happy.

Every little noise,

every new word learned,

every jump,

every breathe,

means we won.

We won and CDH lost.

Every day we are tackling those hurdles,

and finding a way over,

through,

or around them.

Every day is an opportunity to overcome.

Every day is an opportunity to smile,

and laugh,

and live.

The CDH community has been faced with so much loss lately.

It hurts.

I may not know these people,

the children,

these babies,

personally,

but it still breaks my heart to see the loss.

To see their pain.

Their journey in finding a way to make this work for them.

It's a continued reminder of what we could have lost.

What we still can loose.

That things change at the drop of a hat,

the change in the wind,

from one breath to the next.

I would love to be secure in the fact that my son is 3,

a survivor,

and will always be a survivor.

But that doesn't make him untouchable.

There are a million things in life that can go wrong.

All I can be confident in is that I have this day,

this moment,

this breath.

That's all any of us can be confident in really.

Don't take for granted the little moments that make life worth living,

because one day you won't have those moments,

and you'll wish you enjoyed them while you could.

(Image is a pic of Liam receiving a flower from his cousin Chass, reminding us to take the time to stop and smell the "roses")

Want more of Liam? Checkout his facebook page

It's an update

It seems like we are in the midst of being tested yet again.

Last night was the first time in two weeks that Liam had tolerated night feeds at full rate. We're finally back to his old rate of 85 mls per hour and in a few days will have to try yet again to slowly increase the feed until we get to 95mls per hour. 

This morning he woke up with a runny nose. He's also been coughing a lot requiring extra breathing treatments. But those extra treatments are what's allowing him to tolerate feeds. 

I'm suffering from migraines. For the first time in awhile my fibermyalgia seemed to be under control. Pain was minimum. Then out of nowhere the migraines started. They've been lasting up to 3 days long. Give me 1-2 days migraine free before another one strikes. As of 1:20am I've been miserably in pain. I can't function. The migraine was so bad it woke me up from a dead sleep. I was in tears. All I could do to find the slightest bit of comfort was to sit up, leaned over a pillow and rocking back and forth. Meds haven't help. Not even migraine meds. The pain has been so intense I couldn't eat. I've felt sick to my stomach and miserable all day. Wearing sunglasses inside and hanging out in the dark. Late afternoon I fell asleep for 3 blissful hours but didn't wake up much better. I was able to get son food in me as soon as I woke up but then it was back to bed. 

This is my busy week. I have far too much to do than be stuck in bed. I know God won't give me more than I can handle and I'm thankful that Justin has been home to help with the kids today so that I could attempt to get rid of this migraine. I'm also thankful that Liam is finally tollerating night feeds. 

Trying to stay positive about everything. Focusing on what I can be thankful for about the situation instead of how miserable I am and who I can blame. There's no use in blaming. Things happen that's put of our control. 

I wish I could give a better update but this is all I have in me. I can't think straight at the moment but I have faith things will get better. I pray that they will. 

Doubled up on Liam's breathing treatments. 

Was able to braid lanies hair for her this morning. 

And 3 years ago today we began our feeding tube journey. 

Flash Backs: Oxygen

Where we live you can see the Medical Hellicopter fly into the hospital and then fly away transporting whoever. It's very sad. They have a distenctive sound, unlike other copters. They fly right over our house and every time all we can  think is that there could be a baby fighting for its life on it. It's very sad for us. Our next thought was Liams last flight to UCSF how we stood there was watched them fly away with our baby boy and how long it would take us to drive to UCSF through a storm to get to him. It was a 5 hour drive through heavy traffic and heavy rain. The Bay bridge had flooded earlier that day and had been shut down for awhile. When we crossed it there was still lots of water on it as the rain beat down on the car. It was pretty scary. We didn't get to Liam until probably 9pm that night. That hospital stay lasted two weeks. Liam and I alone in a tiny portion of the room we had to share with another patient and had no privacy what so ever being right by the door. I litteraly had 2 feet of room from the sink to liams crib and the chair (pull out bed was there). Liam and I stayed cozied up cuddling all day long. It was a horrible stay. Liam had started desatting during shift change and his numbers kept getting lower and lower. He laid in my arms crying and miserable and in pain. I couldn't soothe him. I called for help 4 times then the mom of the patient next to me went to the nurses station and yelled at them to get their butts in there to help him. I will love that woman forever for that! A few minutes later a PCT (nurses assistant) came in and looked at Liam and ran outta the room. She came back with a nasal canula and hooked him up. Then she called the RT and doctors. I sat there crying because I was mad and devistated and nothing I did helped him. It took a few minutes but Liam's sats came up. They never did figure out why he needed oxygen but everytime they tried to wein they couldn't go below 1/4 litter. After two weeks of testing and unable to wein they decided it wasn't time to do his right diaphragm repair and that he just needed to stay on oxygen. Liam stayed on oxygen 24-7 from April 2012 to August 2012. It took a move back into the city to get him off daytime oxygen. Since then Liam still randomly needs oxygen. His Pulmonologist wants him on oxygen the minute his numbers hit 95 %. (Which is alot). His Puml, GI and Pedi all say its finnaly time to repair. His surgeon has the veto. Sorry about the tangent but thought I'd share more of Liam's past journey.

Coping

WebMD describes depression as intense feelings of sadness, and other symptoms like loosing interest in things you enjoy. WebMD has a great tool to help.

 I'm currently battling the worst of my depression and PTSD. This is my third round of meds trying to treat the depression and PTSD. The side effects were always so bad I just couldn't stay with the meds but WebMD says to stick with the meds, that it could take months to help. They also say to talk to your doctor because you could need a different dose.

WebMD says excersize can help. Thats great and all but I cant find the energy to do so, or the will to push myself.

This last few weeks have been so stressful, especially this last week that yesterday I was maxed. I was so stressed out over Liam feeding supplies still not being here that I shut down. One minute I'm sweeping the kitchen and the next I'm crying and cant stop. It was hard to breathe. I was taking these gulps of air as if I was a fish stranded on dry land. It took me 10 min to pull myself together and calm down. After that I just emotionally shut down. Even today I'm shut down. I'm exhausted and all I want to do is sleep (another sign of depression). I think another factor is my PTSD here. As I'm fighting for Liam's feeding supplies all I could think of was if I don't get his shipment he's going to end up back in the hospital for weight loss, breathing issues and they'll hold him until we get his delivery and he starts gaining weight. All those hospital stays kept running through my head. Seeing Liam behind those metal crib bars, the beeping, cold uncomfortable pull out beds. I felt cold down to my bones and Liams sad face kept showing in my head.

At that point I started crying. I felt like I couldn't keep doing this. Like I had nothing left in me to continue a life of this. And of course that made it worse because its my responsibility to care for Liam. Mine. He should never have to see his mother break down like that and neither should Lanie. I never want Liam to feel that this is all his fault, because he did nothing wrong. That was my last straw, the exact moment when I said no more and refused to wait any longer to begin treatment. I re-starting taking my Paxil and made an appointment with a doctor to make sure I should stay on this med as well as deal with my other medical issues.

I feel resigned to the situation. I have no choice. Things have to change. I'm so angry all the time over everything. I'm angry at every day things as well as everything from Liam being born with CDH and my painful pregnancy. I started having flash backs again and nightmares. So far they haven't been too bad compared to what I've had before.

My life has been one bad card after another since the day I was born, or probably even conceived. Its a very long story that I still don't want care to get into. I was so angry yesterday questioning how bad things could continue to happen to good people. Why on earth I keep getting the short straw when all I do is give and help people. So would the theory be that if I stop caring for others that good things would then happen to me? I highly doubt it. Besides my heart isn't wired to not care for others. I honestly believe its a fault. I will give and give until I have nothing left. This blog post is the last thing I have to give right now, in hopes that maybe somehow something I wrote here today will help someone else.

Yes I had a bit of a breakdown yesterday,

But today I'm still breathing.

Still here to tell my story,

Take care of my kids.

I think that says a lot.

Sometimes you just to let it go,

let it go,

shut down,

and start all over again tomarrow.

I'm taking life one step at a time right now. 

Today I will NOT care about tomarrow.

I will find something today that can make me smile,

make me feel good,

even if only for a few minutes.

Liam is 2 years and 8 months old now. Some days it feels like we were just in NICU yesterday. Every time Liam has a hospital stay I have to start all over in coping with everything. This last break between hospital stays was 8 months. Before that the longest was 8 weeks. It takes work, doesn't go away over night.

Baby You're Sick

I should have known better than to think that Liam would escape Cold/Flu/RSV

season unscathed. It started about a week and a half ago with his allergies. At that time I increased his benedryl from just at night to every 6 hours to help combat the symptoms. I also tried keeping him inside. Problem was every time I turned around big sister or daddy had let him outside. Still he seemed fine.

But of course he had to go to a doctors office where I am sure he must have

caught something on top of his allergies. That or he caught it when we had to run out to the store. We've tried not to take him out of the house for this very reason. I know some of you probably are thinking that you can't keep a kid sheltered and secluded inside the house for that many months. Which we usually do from late September to at least April. We've tried very hard and you're right. It is pretty darn impossible to NEVER take him out somewhere along the way but we try. And we do this for his own health.

It seems to never fail. A soon as Liam gains some weight back, he gets sick, stops

tollerating full feeds and looses all the weight it took 6 months to gain. We are very blessed that he hasn't ended up in the hospital over this yet. This time last year, a cold landed him admitted in the hospital for at least 5 days minimum. Thanks to the synagis shot protecting him from RSV, when he caught RSV in January 2013 he was able to fight it off at home. Too bad they don't have something that works that great against colds.

I'm assuming he caught a cold but with Liam when his allergies get severe enough he has the same symptoms so it's very hard to tell. I know the last two night, last night more than the night before, was pretty bad on him. Last night he was up every hour on the hour. He ran a low grade fever and coughed the whole night. He was miserable. I gave him Motrin at bedtime, then again at 3 am and that kept the low grade fever away. Milk of Magnesia helped his upset tummy but not his diaper. I had to continue to change his diaper every few hours last night because it gave him the runs. Good news is it helped him tolerate 45 mls an hour of feeds. His normal rate is 80 mls per hour so you can be sure he's loosing weight as each hour passes. If I can just get that cough to subside he would be able to tolerate more.

Unfortunately he's not the only one in the house not feeling 100%. Big sister Lanie Bug is having allergy issues of her own. She has been very hard to keep inside. It's been a fight. She hates being inside, especially when someone is outside. Daddy has been outside all weekend working on the car and she wanted to be right there playing the entire weekend. Even though she felt worse that night from it. I told her this morning there was no way she could go outside today because she had school tomarow. That if she did she would get worse and not be able to go to school. Her eyes got huge and she agreed to stay inside. She hates missing school. If only it was that easy to keep Liam wrangled lol.

On top of no going outside, all doors are staying shut today so allergens don't come inside.
Have I ever mentioned how much I hate allergies. I too have been suffering. I finally figured out why my face kept breaking out. I am allergic to the concealer I was using. It's been a few days since I've worn any and my face it clearing up now. My nose and throat are suffering from the pollen and dust in the air. It's winter yet the last few days have felt like late spring/early summer. We had some rain last week but it wasn't enough to clean out the nasty air. I swear socal is the worst place for any with allergies or asthma to live. It's time again for the air purifiers to come out.
 
Of course with two "sick" kiddos, I've been on germ patrol. Lysol
everything. And in doing the sanitizing and cleaning everyday for the last week I've realized how very small our house is. With the kids getting bigger the place seems to be getting smaller. I thought as they got older it would be easier to keep the place clean and everything in its place but I was so very wrong. Instead the kids make more messes and getting them to clean up is a headache. Every little mess seems huge because this place is so small. This weekend I felt like the walls were closing in on me. I thought maybe we had too much stuff and started trying to figure out what we could get rid of. Then I realized that it's because we have no storage in this house. What I need is a professional organizer to come in and revamp everything or lots of money to do it myself lol. Our house didn't feel this small when we moved in.

Oh well, like in all things, I'll find a way to make it work.

In other news:
Liam is ready for a big  boy bed!!
Yep, you read that right.
Liam is ready for a big boy bed!!
hehehe
I love saying that.
My task today is to tackle Liam's room and organize it.We need to get it ready for a toddler bed,
and toys need to be picked up and put up.
Justin and I have to decide now if we're going to go buy him a character toddler bed from say Walmart or Target or if we just want to build a short base to put his mattress on so it's low to the ground for him and to just make it last until he is ready to be moved to a twin bed. To put a twin bed in his room would be difficult with all his medical supplies. I would have to store them somewhere else and we've already tackled the fact that this house is really small so there really is no where else to put them.

Anyhow,
I'm exhausted from lack of sleep.
Waiting for my coffee to kick in.

<3 aubin="" p="">

Medi-Port Flush

I realized today that I have never taken pictures or shared them of Liam's Medi-port flush even though he's had it for 13 months now. It's something I have to do every month but it's never crossed my mind to share. So today as it was the day to flush the dreaded medi-port it dawned on my to share the process. Well pictures anyhow.

Joyful and Triumphant

2013 has been a

Joyful & Triumphant

year for Liam...

And the entire family.

Liam has made so much progress

and has grown so much.

God has been VERY busy

healing our Little Lamb.

We started out the year

with Liam struggling to walk.

He couldn't walk on his own,

let alone stand without assistance.

Still he was happy,

and playful.

The year started out rough.

Liam wanted to crawl everywhere,

but he was hooked to the feeding pump

20 hours per day.

Liam was approved for Physical Therapy.

His PT realized he has low muscle tone in his ankles.

She figured that was the reason he couldn't walk at age 1 1/2.

IFO's were recommended.

And thanks to a generous donation

from a prayer warrior,

Liam was able to get his IFO's.

Still is was a struggle.

We did leg strengthening exersizes daily.

He soon was able to walk holding onto things.

He climbed before he could walk.

Even learned to climb out of the walker

making is unsafe to use.

Which in turn made it very hard

to keep him from pulling out his feeding tube.

Liam wanted to walk so bad

and was so determined

that he even started spider walking. 

He'd stand on all fours,

and his head,

and "walk" across the room.

Then one day out of the blue

we were at the doctors office for a routine visit

when Liam stands up

using the wall to do so,

then starts walking down the hallway.

I sat there shocked.

Then I remembered to grab the camera.

I videoed Liam walking all the way to the back.

It was amazing!

This video was taken the day he decided

he wanted to walk.

May 28th 2013

http://www.youtube.com/watch?v=FKGn2iRiUmQ&feature=youtu.be

It's so hard to believe

that its only been 6 months.

I remember swooping him up into a big hug

right after I videoed him,

then I cried.

I cried again on the way home.

And as I sat here now watching the video,

I am teary eyed.

Its AMAZING!

The same day he had Bright Start and PT.

They were shocked as I was.

Click to review the blog post:

http://mommyconfessionalinmyshoes.blogspot.com/2013/05/unexpected-surprise.html

Liam had several hospital stays

and setbacks throughout the year.

When he finally started eating we were thrilled.

Unfortunately every time he got sick

he would stop eating

and it would take months to get him to start again.

This past year we ditched the GJ tube,

and replaced it with an AMT mini ballonless button.

Hes gone from 20 hour continuos feeds,

to 12 cont night feeds,

and 3 bolus feeds during the day.

We also added Blended diet feeds during the day.

When we started that,

he started eating more,

drinking,

and gaining weight.

He's still super tiny for his age

but growing great.

He's taller and weighs more

than I did at his age.

So this momma isnt worried

about his tiny size as long as he continues to grow.

Liquids were really hard.

For awhile he would only drink

out of a honey bear.

Then it was a baby bottle.

He finally settled on a specific sippy cup.

He's been drinking out of the same kind for about 6 months now.

He's eating now,

but small amount at a time.

He loved dorritos,

french fries,

chicken nuggets,

almost all meats,

pizza,

spagetti,

beef jerky and so on.

We're still dealing with texture issues.

Oral and environmental.

He will let you brush his teeth now,

but not with tooth paste.

He gags and vomits if you do.

We're still having issues with his feet

and he's been reffered to a specialist,

who has yet to call.

Probably because were still waiting on isurance approval.

He can walk without his IFO's now,

but his ankles are so bad they practically touch the ground.

(Theyve gotten worse since this pic)

Verbally,

Liam is improving daily as of this last month.

We were getting worried about him.

His words still arent very clear

 but we understand them.

He speaks some sentences

and copies everyone.

And we made progress in spreading CDH Awareness!!

I sent in a letter to our Mayor.

After reading she declared CDH awareness week in March every year!

Unfortunately I couldn't be present to accept the reward.

But Liam's Grandma was.

Its been an amazing year for our amazing little boy.

Hes come so far!

As you can see

it's been a triumphant and joyous year for us.

What will next year bring?