Mommies Gone Survival Kit

Having a CDHer is hard and trying. Having other kids makes it even harder on both you and the kids. It's really hard on Lanie when I have to take Liam to the hospital stays. She's gotten to the point where she thinks if she keeps her bags packed that she will be able to go with us. I made a deal with her. If she kept her bags unpacked then we'd get a special box filled with stuff. She couldn't have it until Liam's next admittance to the hospital though so its to stay put up. I call it the "Mommies Gone Survival Kit". We got a shoe box sized tub and I let her pick out stuff to put in it. I left plenty of room so I could put in a few suprises as well. Small dolls, stickers, crayons and coloring books, travel games are all awesome for the survival kit. Other good ideas are photos, small books, maybe even a card or letter. This is also a great idea for kids who spend alot of time in the hospital. 

Lanie picked out this tub covered in hearts but you could decorate your own with permanent markers and foam stickers. 

Small items are bet because they take up less space, so you can put more into the box. 

Lanie choose these crayons by CraZArt called Sugary Sweets. We found them at Walmart for .75 cents. We did see a whole new line of Crayola crayons that are glittery, matalic and more. Target sales then for .99 cents. We recently bought a pack of glittery crayons that she absolutely loves. 

Barbie is quickly becoming a hit with Lanie. She picked out 2 of the little dolls (skippers sister or something like that). Lalaloopsy works great too because of the size. For boys there all kinds of great toys that are small enough for the tub. Hint; Check out the dollar store for army men! Hot wheels are awesome too. 

The dollar store and the dollar section at target usually have some good stuff that would be perfect. We got the magnetic tic tac toe in the dollar section at target and the hello kitty stickers and mirror. 

Kids don't need a whole lot. When they open these tubs and see them packed with all kinds of goodies they get excited. 

For hospitalized kids you can add socks, movies, snacks. Card games and those electronic handheld games. We can't go to the hospital without cars and puzzles and books in tow. We also have to bring his favorite stuffed animal. 

In a perfect world we wouldn't have sick children but we might as well make it easier on everyone. 

Chronic Lung Disease: Its Not Just For The Elderly

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)

Diaphragmatic 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 )

 

Nayeli Faith Foundation

Do you live in California, have or expecting a baby with Congenital Diaphragmatic Hernia and are being treated at UCSF? Well the Nayeli Faith Foundation may be able to help you. They helped us.

Nayeli Faith Foundation was there for us when we needed them. Our son had a follow up at UCSF (4 hours away from home) about a month after being discharged from their NICU. Money was extremely tight and we weren’t going to be able to make it. We contacted the Nayeli Faith Foundation as a last resort and because of their generious help we were able to make it to the CDH clinic. Without that clinic we wouldn’t have known our son Liam was Failure To Thrive and needed a feeding tube. At least we wouldn’t have found out before any real damage was done. We learned a lot there that we wouldn’t have known otherwise and its all because Nayeli Faith Foundation helped us get there. They paid for a hotel room so that we could stay overnight the night before, they helped with food and gas. And they still keep track of Liam’s progress and ask how he’s doing, and even ask how we are doing as his parents. They were a shoulder we could lean on when we didn’t know anyone else out there with A CDHer. Ive recommended them to many families in CA and will continue to do so.

-Aubin Bryant

Mom to Liam born 7/14/11 with bi-latteral CDH

Nayeli Faith Foundation Facebook Page: http://www.facebook.com/NayeliFaithFoundation
Website: http://nayelifaithfoundation.com/ 

Mommy and Me Contest

Let's kick of May with some fun! A mommy and me photo contest to celebrate all the moms out there. You do NOT have to have a CDHer to enter The contest. ANYONE can enter. You have to like out page though. Anyone can vote as well but only v...otes from those who like our page will count so make sure you let everyone know when you ask them to vote for you. Please submit your photos to us via fb message or email shootingforliam@yahoo.com and tell us about yourselves. Your names and anything else you'd like to share. Prize will be announced by the June 8TH. Deadlines have been extended. You have until May 20th to submit your photos and voting beings on the 21st.

Rules:
Pictures must be submitted by May 20th. Voting begins on May 21st. Only votes counted are those who like our Facebook page. To view the contest go to http://www.facebook.com/ShootingForLiam
To submit pictures you can message them to our Facebook page or email them to us shootingforliam@yahoo.com