Chronic Lung Disease

When you hear the words Chronic Lung Disease, most people think older people walking around with nasal canulas dragging oxygen tanks with them. Very few people would ever imagine a baby with Chronic Lung Disease. So you could imagine how heart broken I was when Liam was diagnosed with CLD. Come to find out Chronic Lung Disease is just another way of saying long term respitory problems. And although its used mostly for premature babies and elderly, others can get it too.It is also known as bronchopulmonary dysplasia (BPD).

What causes chronic lung disease?

CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:

• prematurity - the lungs, especially the air sacs, are not fully developed
• low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
• oxygen use (high concentrations of oxygen can damage the cells of the lungs)
• mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)

Who is affected by chronic lung disease?

Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:

• birth at less than 30 weeks gestation
• birth weight less than 1,000 (less than 2 pounds) to 1,500 grams (3 pounds 5 ounces)
• hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
• pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
• patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
• premature Caucasian, male babies are at greater risk for developing BPD
• maternal womb infection (chorioamnionitis)
• a family history of asthma
• breathing problems at birth
• develop an infection during or shortly after birth

What are the symptoms of chronic lung disease?

The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:

• respiratory distress (rapid breathing, flaring of the nostrils, grunting, chest retractions)
• continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation

Symptoms of CLD may resemble other conditions or medical problems. Always consult your baby's physician for a diagnosis.

How is chronic lung disease diagnosed?

Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 28 days old. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.

Blood tests (test used to determine if enough oxygen is in the blood) and an echocardiography (test that use sound waves to create images of the heart to rule out defects) are also used to confirm causes of bronchopulmonary dysplasia.

Treatment of chronic lung disease:

Specific treatment for CLD will be determined by your baby's physician based on:

• your baby's gestational age, overall health, and medical history
• extent of the disease
• your baby's tolerance for specific medications, procedures, or therapies
• expectations for the course of the disease
• your opinion or preference

Treatment of CLD may include:

• extra oxygen (to make up for the decreased breathing ability of the damaged lungs) and a pulse oximetry to measure how much oxygen is in the blood
• mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing
• surfactant replacement
• medications such as:
  • bronchodilators (to help open the airways)
  • steroids (to help reduce inflammation)
  • diuretics (to help reduce excess fluid in the lungs)
  • antibiotics (to fight an infection)
• intravenous fluids and nutrition (to help the baby and the lungs grow). It is important to monitor the fluid intake, because excess fluids can build up in the lungs and worsen the infant's breathing ability.
• radiant warmers or incubators to keep the infant warm and decrease the risks of developing an infection
• nutrition (to help the baby and the lungs grow)
• immunization against lung infection by respiratory syncytial virus (RSV) and influenza

CLD can be a long-term condition. Some babies with CLD require mechanical ventilators for several months. Some babies will continue to require oxygen when they go home from the hospital, but most can be weaned from oxygen by the end of their first year. Babies with CLD may be at increased risk for respiratory infection and may have to be re-hospitalized

(Information here was taken from http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html and is for educational purposes. Always seek medical attention and advice when it comes to your health)

Diaphragm Paralysis

I remember when I first heard that Liam's left diaphragm was paralyzed due to CDH and/or Repair. I was freaked out. I didn't know what to expect. The specialist would skate over the issue and just say that he would be ok but they'd keep an eye on him. When we found out that Liam also had a defect in his right diaphragm, therefor he was rediagnosed as bi-lateral CDH, they said they wouldn't touch it unless they absolutely had to because of his left diaphragm already being paralyzed. When you get the news sometimes the info goes in and right back out. So I researched it so that I could refresh my memory:

* Diaphragmatic paralysis, whether it occurs in one or both sides of the diaphragm, is uncommon.

*Whether the paralysis occurs in one (unilateral) or both (bilateral) sides of the diaphragm, all patients will experience some amount of reduction in lung capacity, particularly noticeable when lying down.
Liam's left diaphragm is paralyzed and due to that and pulmonary hypoplasia his left lung hardly functions. He requires daily breathing treatments to keep the lungs open. One treatment is a steroid.

There are many reasons Diaphragmatic Paralysis occurs but for CDHers its usually because:
*The phrenic nerve didn't fully develop or develop properly
*incurred surgical trauma

Patients with diaphragmatic paralysis may experience shortness of breath, headaches, blue lips and fingers, fatigue, insomnia and overall breathing difficulty.  Also:

• Unilateral diaphragmatic paralysis may go undiagnosed. Often patients compensate for the discomfort of reduced lung capacity by sleeping in a semi-upright position or reducing physical activity when there is shortness of breath.
• Bilateral diaphragmatic paralysis presents more severe symptoms, which leads patients to seek medical attention. The shortness of breath is more severe, even with mild exertion.

Newborns and children with unilateral diaphragmatic paralysis may experience more severe respiratory distress than an adult, due to weaker muscles and a more compliant chest wall. The newborn may have a weak cry or show signs of gastrointestinal distress, with frequent vomiting.  Children with bilateral diaphragmatic paralysis require immediate medical attention and ventilator intervention because the condition can be life threatening

The tools used to diagnose diaphragmatic paralysis include:

• Pulmonary function testing while lying down and again while upright.  Lung capacity is often reduced about 10 percent when a person is lying down; patients with bilateral diaphragmatic paralysis may experience a 70 to 80 percent reduction in lung capacity while patients with unilateral diaphragmatic paralysis may experience a 50 percent reduction.
• Chest X-rays or an upright, inspiratory chest radiograph.
• A blood test to measure the amount of oxygen in the blood.
• Measuring transdiaphragmatic pressure and thickness.
• Phrenic nerve stimulation testing.
• Electromyography, a test that evaluates and records electrical activity produced by skeletal muscles.
• Computed tomography (CT) scanning of the thorax and/or abdomen.
• Magnetic resonance imaging (MRI) to determine if there is an underlying condition involving the spinal column or nerve roots.
• Ultrasound to see the activity of the diaphragm and to identify any unusual movement or lack of movement.

Treating Diaphragmatic Paralysis

Physicians take into consideration the overall health of the patient, the severity of symptoms as well as any underlying cause for the paralysis:

• Diaphragmatic plication, a surgical procedure that pulls the diaphragm down, is commonly used in patients with unilateral paralysis.  The surgery allows the diaphragm to moves so as to expand better and improve ventilation.  Patients with more severe symptoms, such as a respiratory infection, asthma or COPD (chronic obstructive pulmonary disease), can benefit from diaphragmatic plication.
• If the patient has no symptoms, or the symptoms are mild, and the patient is in otherwise good health, no treatment may be necessary.
• Breathing pacemakers may be used in patients who have functioning phrenic nerves, such as patients with ALS or spinal cord injury. The devices may result in improved respiratory function and lower infection rates.
• Thoracoscopic diaphragm plication may be an option for some patients, resulting in a shorter hospital stays than other techniques.
• In severe cases of patients on a ventilator due to bilateral diaphragmatic paralysis, the diaphragm might be plicated to help get patients off the ventilator.
• A tracheostomy, the surgical formation of an opening in the trachea, helps allow the passage of air.  This approach is commonly used for patients with a life threatening disease or a diagnosis of high quadriplegia.

Liam had been on a ventilator at birth and slowly weined to CPAP, then a nasal canula and off. He's required oxygen on and off for the last year. A common cold or flu and his lungs need the additional support of oxygen. Since a plication on his already repaired left diaphragm, we know that doing another one will not help. His right diaphragm needs a plication but in Liams case it is too dangerous to do for several reasons:
*They cannot risk his right diaphragm from becomming paralyzed because it will cause more lung issues than he already has. With him having Chronic Lung Disease his chances are lower of being able to breathe without a vent.
*Liam's body creates alot of scar tissue and because of all his surgeries his abdomen is full of scar tissue. Scar tissue if harder to heal and work with. Because of all the scar tissue they cannot do a plication laprascopically. They would have to open his chest cavity and that is a risk no surgeon wants to take.

Prognosis for Diaphragmatic Paralysis

The prognosis for unilateral paralysis is quite good, providing there is no underlying pulmonary disease.  Sometimes, patients recover without any medical intervention.The prognosis for bilateral paralysis also depends on the overall health of the patient but surgery may be the best option for patients who continue to have a poor quality of life.

(Follow the link to read the full article from Cedars Sinai http://www.cedars-sinai.edu/Patients/Health-Conditions/Paralyzed-Diaphragm-Diaphragmatic-Paralysis.aspx )

 

Baby Comparison

The Night before Lanie was born (2/08/08)

3 Days before Liam was born

Lanie at birth-3hrs old (2/09/08)

Liam at birth-8hrs old (7/15/11 day after)

Lanie at 6 months:

Liam at 6months

Lanie at 12 months:

Liam at 12 months:

Big Sister Lanie at 18 months:

 

Liam at 18 months:

 

Ideas For Hospital Stays: Meals

Everyone whose ever stayed at the hospital with their families knows how expensive the cafeteria can be. It cost a small fortune to eat for a few short days, let alone a week or months or longer. Those that stay in the hospital frequently usually run to the nearest store and pick up foods that can be stored in the hospital rooms cabinet and be heated up in the cafeteria (for those cafeterias that have microwaves any way). You also know that after a few days you start longing for a good home cooked meal and that can homesickness and make a hospital stay harder.

I just saw a commercial for this product and thought "that would be perfect for hospital stays". Grantid Im not sure if hospital policy would allow you to use it.

The NuWave PIC is a precision induction cooktop. Its small and never gets hot. The induction cookware gets hot but not the cooktop. So if you forget to turn it off, as long as theres not a pan on it, it theoretically shouldnt catch fire...THEORETICALLY!

It's small and portable, even comes with a storage bag so you could easily take it with you anywhere. I immediately wished I had had one of these these last 22 1/2 months of hospital stays.

If anything you should take a few minutes and check out this product. No I'm NOT getting paid to post this and I am in no way associated with the company or its product. I just think its pretty cool. Like I said, I wish I had had this the last 22 1/2 months of hospital stays.

http://www.nuwavepic.com/

Cherubim Boutique Flash Fridays

Every Friday I put a few items up on my facebook page on sale. I let them stay on there a few days before adding them to my online store at normal price. This weeks flash Friday sale is in celebration on Memorial Day and getting ready for 4th of July. 

Every Friday new items are posted. Follow my FB page for great deals, FB only deals and coupons. 

http://www.facebook.com/ShopCherubim

Cherubum Boutique online store:

http://Cherubim.storenvy.com

I've also have a kitsylane Boutique:

http://truliefree.kitsylane.com

I am also a rep for Oliver's Labels

http://www.oliverslabels.com/AubinBryant

Unexpected surprise

Yesterday I posted a video of Liam walking a short distance. I was so thrilled. He had been walking more and more. I named the video "So close to walking full time". Here's the link http://youtu.be/XpgY4CZiGBw

Little did I know when I posted that video that the very next day I'd be posting one called "It's official!! I have a walker!!" 

http://youtu.be/FKGn2iRiUmQ

I was prepared to wait months still for Liam to walk. In fact the way his progress had been going I expected to wait months. Imagine the feelings that courses through me as I watched, and thankfully videoed Liam at the exact moment he decided to become a walker. I just figured he'd go a short distance but none the less I wanted a video since I hadn't gotten very many. I watched as he walke down one hall before the nurse came to take us to a room at the peds office. Then I continued to watch as he decided to walk the entire way to his room! I wanted to scream with joy at the top of my lungs that my baby boy who had survived CDH, ECMO and countless other obstacles had now overcame yet another obstacle. I think the moment meant more because it had taken so long for him to get here. My son, my miracle has once again told CDH where to stick it!! 

Liam and Miss Amanda his PT

Liam and Miss Julia our Beightstart worker

Mommies Like To Play Too

I had so much fun just hanging out with the kids yesterday. 

We raced cars down the sloped kitchen floor. 

(Only sloped enough for the cars to zoom with a slight push)

We laughed so much. Liam clapped an clapped. 

"Yay!" He'd say. 

Lanie and I took some mommy daughter time. 

We had McDonalds for lunch. Then went to Target and the dollar store in search of ice trays since our ice maker broke. 

The search for ice trays may not sound fun but with a 5 year old in tow, its pretty entertaining. 

Before heading home, we stopped off at the grocery store where I spoiled Buggie with ice cream. After all, why should Daddy have all the fun spoiling her.

After we for home, Buggie, Hammie (another nickname give by cousin KayKay) and I read a few books followed by some outside time with churros. 

It was one of the bay days we've had in a long time. 

Cherish the moments

It seems like my days are never long enough. I've been so pre-occupied with tasks that I frequently forget to sit back and enjoy a smile on my children's faces. Tonight I took a picture of Liam for his facebook face and it just got to me.

 I see his smile all day long, but on days like today I haven't been able to really truly enjoy them. Worse yet, Liam takes up so much of my time that it seems I am disciplining Lanie more than I am praising her or spending quality time with her. It breaks my heart. So tomarrow, Im taking the day off from trying to get my online businesses off the ground and the other things I do to just spend time playing with the kids.

"Enjoy them while they're small because they'll never be this age again" Aubin Bryant

I've spent so much time trying to help other CDH families that my own have taken a bit of a back burner as far as quality time goes. Its time to make a change. Of course I will always be there for my CDH friends and other CDH families who need me as well as friends and family. I'm just going  to spent more time playing CandyLand, tea party, vroom vrooms and reading books.

Tomarrow we will race hot wheels down the sloped kitchen floor. Give Sparkle Sunshine a makeover. Invite Merida to a tea party fit for a queen. And catch up on some snuggles and stories.

"The Natural state of motherhood is unselfishness. When you become a mother, you are no longer the center of your own universe. You relinquish that position to your children." Jessica Lange

"Live so that when your children think of fairness, caring, and integrity, they think of you" H. Jackson Brown Jr

Brightstart teacher came out with Julia (the one who does the hands on stuff) and she did his evaluation since she wont be here for the actual eval but she needed to get the paperwork done for the teacher who will be filling her place for that. Before I tell you how he scored I want to say that he's come so far from a year ago and that I am so proud of him, no matter his "scores".
Keep in mind all his hospital stays and the bright spot on his MRI on the cognative thinking and fine motor skills part of his brain:
Fine motor skills hes at what a 12-15 month old would be.
Gross motor skills hes at a 12 month old
Socially, even though he doesn't talk hes at 24months!!! (and hes only 22 months)
...
Expressive language skills hes at 12 months.

He's not as bad as I feared he would be. And Im so happy to see that he is ahead socially. Although that's not too suprising since he loves being the center of attention and will do whatever it takes to be the center of attention lol
I read on a blog today that there was an unspoken rule that when your chronically ill child is doing really well that you do NOT talk about it because that's just asking for trouble. When Liam was little and would go a week doing good Id get really nervous and refuse to talk about how well he was doing. I felt it would jinx us. As he got older I started celebrating these times. I wouldn't say anything until we beat our last record of being home. Remember how I was celebrating Liam's 8 weeks home? I couldn't help it. I was so over joyed. I don't see myself celebrating again until its been a very long time, atleast 6 months. It seems everytime I open my mouth he ends back up at the hospital.

 

Setbacks

Setbacks  are a common accurance for our little lamb. And it would just be unusual if he had gotten sick without being followed by a setback. Its has been painfully obvious that little mans feeding has taken a HUGE setback. He hasn't wanted to eat anything in the 12 days he's been sick, but you wouldn't either if your tummy was hurting. Liam has also not been as active as usually. He's content to just sit or lay and chill out. He hasn't been walking or standing as much. Brightstart and PT came today and we are all hoping its just a energy issue. His pediatrician isn't happy with the  weight loss and his growth chart now shows a pretty significant drop. Liam isn't tolerating his night feeds so that isn't helping.

As of last night Lanie isn't feeling well either. She complained of a tummy ache and refused to eat or drink. Her temp was slowly climbing so I have her Tylenol and she seemed fine 30 min later. She then ate dinner (Mac and cheese and gateraaide) before going to bed. So time during the night she vommited but was too scared to get up and say anything. 

To top it off I seriously hurt my toe last night. I think I broke it. I've been trying to do the laundry, clean the house and take care of these two sick babies. I just want my babies to feel better. I can deal with my pain as long as these two are happy and healthy. 

<3

Love, Compassion, Understanding and Anxiety

Family means EVERYTHING.

 

Maybe it's just me and my issues with not having a functional family growing up,

But having a family I can DEPEND on,

Who LOVE UNCONDITIONALLY,

Means everything to me.

 

My father (birth father) died when I was about 8-9 years old.

I only remember seeing him once,

but that one set of memories from that visit has stayed with me all these years,

Engrained into my memory,

My heart,

and has helped mold me to who I am today.

My heart aches sometimes as what I lost,

What could have been.
I took from this experience,
That a child needs their father.

 

Everything happens for a reason.

 

My mother,

I don't think she ever cared.

She gave birth to be at 16,

then my brother 18 months later.

"Irish Twins" its called when two babies are born so close in age.

She gave us up.

Pawned us off because drugs were more important.

4 years after my brother was born,

Our "Mother" gave birth to another baby,

Our half-sister.

Whom she didn't raise either.

Although she did stick around longer for our sister than either of us.

I wish I could say she did the right thing giving us up,

But the situation she put us in wasn't all that much better.

Anyhow...

After I grew up,

Even though she had been in and out of my life for most of my life,

Although more out than in,

I let her back in.

I was just turning 21.

Things seemed really good.

She seemed to have changed.

Started making better decisions with her life,

and more than willing to have a relationship with me.

That lasted almost 6 years.

What changed?

I gave birth to my daughter,

And after spending the first week of my daughters life living with us,

She dissapeared.

I hardly ever heard from her.

When I did it was short calls.

She never had time to really talk.

Never had time to visit.

Finnaly I flat out asked her what her problem was.

She pretended nothing happened.

The few times we did see her,

She wasn't herself.

Finnaly I confronted her.

She was on drugs.

I wouldnt allow that in my house,

or around my child.

I told her she wasn't allowed around my family while she was high,

or comming down,

or had it in her possesion.

I didn't even know what it was,

but it didnt matter.

After a year of her being gone,

She calls and wants back in our lives.

I tell her its her last chance.

If she screws up shes gone.

No lieing.

No using.

No dissapearing.

If she walked out,
She was out for good.
We saw her ONCE,
Talked to her a handfull of times,
Then she was gone again.
She never returned phone calls,
Emails,
Nothing.
So I wrote her one last time.
Told her she made her bed,
Now shed sleep in it.
I was done.
I wouldn't have her mess up my daughter,
Like shed done me growing up.
It took 6 months,
6 months,
For my 1 year old to stop calling for her Nana.
Everyday my heart broke more.
Not for me,
But for the little girl with her broken heart.
A mirror image of myself as a child.
Waiting on the same woman who didn't give a damn about me.
That's what drugs will do to you.
Drugs become more important than family.
My mother taught me two lessons my entire life:
To stay away from drugs,
And how NOT to be a mother.
Even through all her issues,
And even though she hurt my family,
And me,
Many times.
I Love her.
And I forgive her.
But forgiveness and stupidity are two different things.
I forgive the last almost 30 years of crap,
but im NOT stupid enough to let  her back into our lives.


I won't even touch the rest of my "childhood" with a 10 foot stick.
Its not worth it.
I know how not to be.
How not to treat people.
How not to raise my kids.
My phycology teacher told me that I have this rare personality that takes the good out of every situation,
No matter how bad the situation.
Most important lesson from my "childhood",
is how to love my kids.
Feeling loved,
Feeling wanted,
Wasn't something I often felt.


Since Liam's birth,
And all his medical issues,
And hospital stays.
I hear:
"How do you do it?"
"Im not strong enough to go through what you've gone through with Liam"
ALOT.
Truthfully?
My crappy childhood taught me that a mother is ALWAYS there for their children.
Even though mine never was.
When the going gets tough,
You don't turn tail and run.
You hike up your skirt and face it straight on.
Yea I've been through some pretty bad situation in my life,
And admitidly,
Watching Liam struggle was the worst,
But I had made myself several promisses at an early age:
1) Never do drugs
2) Never abandon my kids like I was
Life lessons and God got me through,
Always will.

Im always striving to be a better mom,
Worried that someone thinks Im anything like my mother.
Im NOTHING like her.
I will NEVER be anything like her.
I feel like Im being judged by her actions sometimes.
My mother would have ditched Liam at birth if shed given birth to him.
Her response wouldn't have been,
"Do whatever you can to save my baby"
As I told the doctors.
She is a selfish human being.
I feel she is lacking all moral code.
Because of this,
I do more for others than myself.
I get told frequently that I have to do more for myself,
take are of myself too.
I hardly ever listen.
I feel good knowing that my kids are taken care of.

Liam's mediport is due to be flushed monday.
Im extremely anxous.
Im dissapointed,
even alittle angry at myself,
for not being able to get it the last two times.
I have to do this.
I have to be able to do this.
Theres just so much pressure for me to get it right.

Im in an odd place tonight.
Ive had alot on my mind lately.
Alot that just needed to be thrown out there.