13 Days Of Thanks

Day 13: S4L is thankful to be able to share the ups and downs rollercoaster with all the CDH families we have connected with. We are also greatful to me able to share these updates with you and try to make a difference somewhere.

Day 12: S4L is thankful for GI specialist and feeding therapist.

Day 11: S4L is thankful for physical therapist.

Day 10: S4L is thankful for CDH specialist and researchers.

Day 9: S4L is thankful for Respitory Therapist. You guys are amazing!!

Day 8: S4L is thankful for ER nurses at Children's hospital Central CA for making all our visits as stress free as possible. You work hard and manage to smile even when exhausted. Thank you ER nurses everywhere!!!

Day 7: S4L is thankful to the NICU staff at UCSF for taking such great care of all the babies in their care. You are an amazing team and have become like family to us!

Day 6: S4L is thankful for the emergency transport teams that have taken care of Liam for both hellicopter rides to UCSF. Thank you for getting our Liam safely to his destination. And thank you to all transport teams out there for doing a wonderful job!!

Day 5: S4L is thankful for ECMO because it helped save so many lives, including Liam's and continues to do so.

Day 4: S4L is thankful for FB page Blenderized Food For Tubies. Because of the info they provided and the support they gave me I started Liam on the BD for a few bolus feeds and because of that he is growing great and even getting chubby cheeks.http://www.facebook.com/foodfortubies

Day 3: S4L is thankful for FB page Feeding Tube Awareness for providing great info on feeding tubes and helping families connect. http://www.facebook.com/FeedingTubeAwareness

Day 2: S4L is thankful for Nayeli Faith Foundation because they helped us when we needed it the most. Not only did they provide UCSF with meal cards and parking passes that got passed onto us and so many other families, they also provided us with a hotel room, food card and gas card to get Liam to his first CDH clinic just a month after he was released. NFF continues to help CDH families. http://www.facebook.com/NayeliFaithFoundation

Day 1:  S4L is thankful for Breath Of Hope. BOH has been there for us and supported us through Liams worst and best days. They provided us with info that we didn't know was available and gave us hope. Thank you for all you so Breath of Hope!!http://www.facebook.com/BreathofHope

Olive Rae's Inspiring Story

Meet Olive Rae. Olive's mom Jessica stopped by our Facebook page to share her daughters amazing and inspiring story and has given us permission to share her story with you. 

Olive was born April 10, 2013 in Boston with Left Congenital Diaphragmatic Hernia as well as head sparing intrauterine growth restriction. Olive was two weeks early and weight only 4lbs. She measured 15.25 inches in length. Olive underwent repair surgery at less than 28 hours old. Not only did Olive come off the vent at day five, but mommy also got to hold her sweet baby girl in her arms for the first time. On Olive's three week birthday she was discharged from NICU and taken home to NH. Her only medication is for reflux. She was sent home on oxygen, but only for during feeds. As of June 12th she had been oxygen free for 7 days and had been maintaining her levels. She is continuing to do so and the doctors are impressed. She now weights 7.5lbs, almost doubling her birth weight in just 2 months!! Mom says she is tiny but feisty (a trait to be proud of in a CDHer). Her heart continues to be in the right side of her chest, and one side is enlarged. This is being monitored closely but she does not require any meds for this.

"We know CDH is a roller coaster, but we couldn't be happier with her progress at this point" Mom Jessica

Mom wanted to share Olive's story because she knows how important positive stories are. Sometimes we get so caught up in the bad of CDH we forget to stop and look at all the positives that are children are going through. I love hearing amazing stories like this because they help give me and other hope. Thank you Jessica for sharing Olive's story and we will keep her and your family in our prayers <3


What is Intrauterine Growth Restriction?
*Intrauterine growth restriction (IUGR) refers to poor growth of a baby while in the mother's womb during pregnancy. The causes can be many, but most often involve poor maternal nutrition or lack of adequate oxygen supply to the fetus. At least 60% of the 4 million neonatal deaths that occur worldwide every year are associated with low birth weight (LBW), caused by intrauterine growth restriction (IUGR), preterm delivery, and genetic/chromosomal abnormalities,^[1] demonstrating that under-nutrition is already a leading health problem at birth.

There are 2 major categories of IUGR: symmetrical and asymmetrical.

Asymmetrical IUGR is more common. In asymmetrical IUGR, there is restriction of weight followed by length. The head continues to grow at normal or near-normal rates (head sparing). This is a protective mechanism that may have evolved to promote brain development. This type of IUGR is most commonly caused by extrinsic factors that affect the fetus at later gestational ages.

Symmetrical IUGR is less common and is more worrisome. This type of IUGR usually begins early in gestation. Since most neurons are developed by the 18th week of gestation, the fetus with symmetrical IUGR is more likely to have permanent neurological sequela.

Feeding Pump Tip

After months of Liam sleeping through the night but having to continue to wake up to add formula I the feeding pump and to re-prime it every 4 hours, I was fed up! Formula cannot stay un-refrigerated for more than 4 hours because it goes bad. My solution? I got those insulated bags from when they'd mail me Liam's refrigerated meds that needed to stay cool during the journey. I figured I meds can stay good traveling for 2 days in these bags, surely formula will be fine for 12 hours. I cut a small hole in an upper corner, where the opening is so I could hang it on his IV pole. Then I cut a hole in the corner diagonal to that big enough for the tubing to go through. After filling the bag with the formula he needs for the night, I add a few ice packs to keep it cold. Liam normally uses just a bit more formula that the bag can hold at one time so I just refill it after I go to bed a few goes after he does. I've been doing this for a week now and its been a life saver. The next morning the bag doesn't look gross from old milk either because the milk never went bad. His tummy also handled is better. You can buy insulated bag at most stores. I've also used a zip lock bag and a few other things but this works the best. 

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

What to expect when your expecting...A CDHer

What to expect when your expecting...A CDHer and Questions that we've been asked........

Weather your expecting a CDHer or taken by suprise when you give birth to one, the very first important bit of advice I can give you is....

                               Every CDHer is DIFFERENT



Don't campare your baby to another because theres nothing to say one baby is going to better than another based on the size of their defect. In some cases babies with bigger defects have done better than those with smaller defect, but that isnt always the case ofcourse.

No two babies are the same, and no two treatments are the same.

Treatments can and usually are very similar but things change depending on each baby.

How long can we expect to stay in NICU?

That all depends on your baby because every CDHer is different.

I had a nurse at UCSF tell me the shortest time they saw a CDHer stay in their NICU was 4 weeks.

But CDHers can stay for months and on tough cases possibly years.

While your sitting there at your babies side don't stress over how long you and your child are going to be there, but instead celebrate the milestones because I can promise you there will be many.

Celebrate the good blood gases.

Celebrate the length of time your baby can stay excubated instead of worrying that they had to be re-intubated.

It's the little things that will get you through your days.


Do I need to get rid of my animals because of my baby being born with CDH?
This is a question I see asked alot on many sites.
Our NICU nurses and Doctors as well as our Doctors and specialist at Childrens hospital told us that no we did NOT have to get rid of our animals because our son Liam was born with CDH.
Infact they said that growing up with animals, instead of sheltering them would decrease their chances of being allergic to the animals later on in life.
As long as our son didn't have any allergic reactions to our cats we were cleared to keep them.
Of course we kept the cats away from him when he was a baby because cats hair can get into the babies nose and end up suffocating them. We also made sure to vaccume on a daily basis to help keep cat hair and dander down. Keeping your animals brushed and bathed reqularly can help.
Liam is 21 months and has Chronic Lung Disease and we had two cats at the time (1 as of a year ago) and he had no problems. Now he even pets our cat. Their very close actually. We also have an outside rabbit and an outside dog. Liam will sit at the back screen door and play with the dog through the screen. The only reason The dont get to play together except once is because the dog is a jumper and I don't want Liam hurt. Liams Uncle and Tia have a inside/outside cat and outside dog and he's also good with those animal. No respitory problems after being around them or allergy issues. Their dog is a chow and has really thick long hair too and its not a problem.
Every case is different and it doesn't hurt to ask your doctors. The Pulmonologist and the CDH specialist would probably be the best to ask. Keep in mind each doctor does things differently so just because we were told it was ok to keep our animals doesnt neccessarily mean you'll get the same answer.
I know many CDH families who have animals and only one that I have followed had to keep their animals away from their child and slowly introduce the animals back into the home after the baby got older.
Animals and tubing:
Weather feeding tube or oxygen or any other tunes and wires the main thing you need to watch with animals is that they like to play with it. Any sudden movement in tubing can rile up a cat and make them think its a play toy. With dogs, watch for the chewing on tubing. One time we let the dog in the house and Liam was in the livingroom and I cought the dog with the feeding oxygen tubing in his mouth. That was the last time he
 was allowed in the house.

What should I pack for my baby?
Its hard to know what to pack when you don't know what to expect. My son was at UCSF a hospital 4 hours away from home in a city I knew nothing about. I didn't know what to expect or what to pack so I ended up packing alot of things that I had to send back home with my husband.
When a baby is in NICU theres no alot of things they can use or need at first.
They allow your baby to wear socks, mittens, diaper and sometimes a hat.
Tip: socks work way better than mittens on their little hands and because socks are longer they can be
 pulled up to cover most the babies arm to help keep them warm.
They usually always allow a small stuffed animal to stay at their bedside.
As your baby is allowed to wake up and gets moved to a crib they'll need toys and things to help stimulate their minds like:
Crib mirror, mobile, toys that can be hung on the side of the crib.
We hung a bright colored blanket that have dinosuars and was very colorful on the side of our sons crib for stimulation. It also sort of seperated him from the rest of NICU by doing this.
By the time they get into a reqular crib they will be allowed to wear clothing.
Onsies and tshirts are the best because then the nurses can still access everything without having to undress the baby. You'll also be able to bring in babies own blankets too.
If your like me staying a long way away from home,
id recommend packing your baby atleast 12 pairs of socks because they'll be used on their hands as well and you dont want to have to be doing laundry all the time. I know Liam went through atleast 12 pairs of socks a week. You'll only need 2 maybe 3 hats to start off with.

Tips on what to pack for yourself:
Besides the normal clothes and toiletries I suggest a device that can go online:
Ipod, Kindle, mini Computer.
You'll want something you can use to keep your family and friends updated on your sweet baby. Blogging and opening and starting a FB page for your little one are good ideas.
You'll want to take pictures daily but beware of using the flash. There are alot of babies in NICU and all need to rest and be undisturbed and a flash can bother them, including your baby.
A book is always great to keep with you, or if your divice reads ebooks thats even better.
If your not wanting to blog all your feeling and share with the world a paper journal and pen would be great. Lots goes on everyday and it can be hard to short through your thoughts and feelings. Having a place you can write them down can also help you work through them as well as have a keepsake for your baby to read when they get older. It'll show them that yes it was a tough struggle and an emotional rollercoaster but if you can survive that you can survive anything.
It can be cold in the hospital so keeping a sweater with you in ideal.
Beverages without lids arent allowed in NICU so you'll want to use a reusable water bottle.

When did your CDH start walking?
This question seems to be one of concern for alot of parents and the answers vary.
Liam is 21 months old. He just started standing a few months ago and recently without assistance.
With the help of IFO's he is able to take a few steps at a time.
The most he's every taken was 19 but his normal is 8 steps.
Liam's feet outtoe and his arch is weak and colapse causing him to be unable to stand or walk on his own very well. The IFO's help him stand and take steps.
He's had IFO's for a month and a half and still doesn't walk for long periods.
I've read about CDHers walking around 8 months old and others not till age 1 or 2.
These babies tend to be physically behind from all the hoapital stays they endure and all the medical issues they have. Each child is different though.

Have you ever been told that their CDH baby can go into respiratory failure if allowed to cry too long/hard? I was told when we left NICU not to let Liam cry for extended periods of time because they could reherniate. I was also told that yes its good for their lungs to cry but not to over-do it because it could cause damage to his lungs.
I've read where some were never told this and others were told the more the baby cries the better to excersize those lungs and keep them open.
Now that my son is bigger the RT's love it when he cries because it does help open his lungs, which is what we want because of all his lung issues.
That in mind, we also give Chest PT daily during his breating treatments.
If your baby reherniates theyre going to have respitory distress because of the pressure on their lungs and the fact that the diaphragm is designed to help the lungs retracked but cant do its job when its herniated.

Q: I have been following Liam's journey since my son was diagnosed with CDH inutero in Dec 2011. I have followed your ups and downs with Liam's feeding and am pretty worried we are gonne be on the same journey. We have a GJtube placed tomarrow at 9a instead of his Gtube. I would like any advice on how to care for a GJ that you could give me.

A: Feeding tubes can be over whelming at first. When Liam came out of surgery for a Gtube I was petrified to hold him because I thought Id hurt him. It took me weeks to realize I could hold him like a normal baby. And when it came time he did pull out the tube, he acted like nothing happened.

*As for care: keep the site cleam. Use a wet wash cloth to clean the area and keep it as dry as you can. Our medical supply CO provides us with split 2x2 guaze to use around the tube but I found that they don't work very well. They didn't soak up all the leaking fluid and the pad itself would be drenched in no time. The guaze had to be changed every few hours or they would just contribute to irritating the skin. I ordered a few Gtube pads a few weeks ago and within 2 days I saw a HUGE improvement. Check out Sew Amazing Creations. She makes really awesome tube pads at the cheapest price on the market. Only $1 per pad! http://www.facebook.com/SewAmazingCreations

*The most imortant thing with a GJtube is that you do NOT want it to spin. If it spins the J port could back out of the intestines into the stomach defeating the purpose of the GJ. Again the best thing I found to keep this from happening is the Gtube pads.

*Keeping your child from pulling out tube is a challenge but it is possible. We used to think a onsie would prevent Liam from pulling out his tube but last August we learned how very wrong we were. He was able to pull it out right with no problem whatsoever. Tummy belts or an ace bandage work excelent in helping keeping that tubie in.
*Pump feeding and mobility are a daily issue when you have an active one like Liam who just cant sit still. We figured out that we can put the pump and bag into its portable backpack and strap it to his walker allowing him to roam the house at his pleasure. Allowing him to free roam and crawl around without getting too far away from the pump is an issue. We have to just watch him and keep him near the pump or follow him around with the pump. As he's getting older we've noticed that he somtimes listens when we tell him to stop as he's crawling too far away but he also loves to ignore people. The other thing we've notices that when he's getting too far away and it pulls the tube just slightly he feels it and stops himself from going further away. He knows he doesnt like the pain. I think that as they get older it gets easier on everyone.

Q: My son has had a Gtube since July. We have had nothing but problems with it since his 6 week post op appointment. It has leaked, his skin is being eaten. They want to put in a GJ in cause he's throwing up past his Nissin and is failure to thrive.

A: Thats how Liam is. His tube leaks all the time. The Gtube pads are the best thing Ive found. They are thick so they pull the tube taunt against the inside preventing fluid from leaking through. Thats something the guaze doesn't do. We've tried all kinds of creams the GI prescribed but the best thing was to keep it dry.

Q: What problems have you had with the GJtube?

A: The main issue is that for some reason his GJtube actually desinigrates. The ports pop out because of this and his J port line has gotten clogged many times. We're not sure if its Liam or the way these tubes are made. Theres nothing we can do to prevent the tube system from falling apart but we can prevent it from getting clogged. Once a week we have to use soda, we use Pepsi but you can use Coke, to clean the Jport. We use 6 to 8 mls of soda, inject it into the J extension then let it set for atleast 15 to 20 minutes. Then we can go back to using it as normal. These are orders via our GI. Because its such a small amount it won't hurt him. And Ive monitored him after and theres no hyperness are anything else we've noticed after the soda gets into his system.

Sharing the Love

Looms of Love is an awesome page that provides children and babies on a health journey with knitted hats free of charge. They are making one for our little lamb Liam and sending it to him. Please go like their Facebook Page and let them know Liam Michael Bryant sent you.

 

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My Prayer Warriors have been praying for Liam as well as many may others. Please go check ourt their Facebook Page and let them know Liam Michael Bryant sent you.

 

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Super Skylars Prayer Warriors: This little boy Skylar was born with Craniosynotosis, 14q23.2 duplication with normal karyotype 46,XY. Please keep this sweet little guy in your prayers and go like his Facebook page.

 

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Prayers for Isaac:

I've been follow Sir Isaac for about a year now. He was born with CDH like Liam. He has a feeding tube and a trach. We love this little guy and pray you will all go and follow his progress.

 

 

Auction is LIVE!!

The auction for CDH Research is live!! If you all could head on over and check out the auction items and share the auction with others that would be awesome! 100% of the proceedes go to CDH research via Breath Of Hope! Lets make this auction successful and help put an end to the suffering CDH causes

http://www.facebook.com/ShootingForLiam

These items and more are in the auction!
 

Liams CDH Awareness Video

Helping to spread the word about CDH

http://youtu.be/vALE42uY7zM 

S4L Auction for CDH Research

We're in the process of putting together  a auction to raise money for CDH Research. ALL proceedes from this auction will be donated to Breath Of Hope for Research. We are currently looking for donations for this auction. If you are willing to donate please contact us on our Facebook Page http://www.facebook.com/ShootingForLiam

Now for a sneak peak at whats going to be in the auction and the vendors who have donated!!

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Cecile with UpperCase Living has donated a beautiful frame that is sure to brighten up your home for Spring. Please go Like her Facebook Page to show her love for helping us raise money for CDH Research as well as help us spread awareness by creating some awesome CDH UpperCase Living Items. http://www.facebook.com/UppercaseLivingByCecile

 

 



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Megan Hansen, A Independant Consultant for Sentsy has donated 6 Baby Scentsy Buddys. Please visit her Consultant page if your interested in purchasing Scentsy products
https://meganhansen.scentsy.us

All baby Scentsy Buddies come with 1 scent and will  be sent to you directly from the Scentsy Warehouse. These are a $20 value.

 

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Megan at Miss Bella's Closet has donated $150 worth of Gift Certificate's. 2 $25 gift certificates and 2 $50. Please go like her Facebook Page to tell her thank you for helping us raise CDH Awareness and money for CDH Research http://www.facebook.com/MissBellasCloset

 

 

 

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 Remember, the money raised goes to CDH Research so please bid with your hearts <3 <3 <3

 

 

S4L CDH Awareness Balloon Release

Unfortunately with the information I gained talking to Parks and Rec, our CDH Awareness Balloon Release isn't going to be as big as I'd hoped for. They want $210 for the only available arbor, a $100 deposit on top of that, we need to purchase insurance and we have to go through a special events committee that takes 60 days to get through. We don't have 60 days, we have 39, nor do we have the funds. So our event has been downsized. There will be no vendors. We will however be meeting at the Sports Park in Visalia at 1pm by the Playground wearing our teal and turquiose. We will do our best to spread awareness to those around us, and we will be releasing balloons. We are going to get as many balloons as we can, especially for those of you comming from out of town. Balloons will cost $2 and the money will be donated to Breath of Hope for CDH Research. You are also welcome to bring your own balloons, just be sure they are laytex because its illegal to release mylar balloons. Make sure to Like our Facebook page to stay current on all our events. http://www.facebook.com/ShootingForLiam

Ask Me

 

Feeding Tube Awareness Week might have ended yesterday but that doesn't mean we have to stop spreading awareness or knowledge. Feeding tubes are somewhat of an unknown to the majority of people. There are alot of missunderstandings and wrong information floating around out there and S4L wants to help fix that. Liam has been on a feeding tube for quiet some time now and has had 3 different types of tubes. Go ahead and ask any questions or state any concerns you have and we will be happy to answer. Comments are welcome. If you want to stay annonymous just email me at shootingforliam@yahoo.com You can also post questions at http://www.facebook.com/ShootingForLiam

 

Liam after Gtube and Nissin Fundo Surgery. October 2011

Here's some Questions we got on Liam's FB page:

Q: I have been following Liam's journey since my son was diagnosed with CDH inutero in Dec 2011. I have followed your ups and downs with Liam's feeding and am pretty worried we are gonne be on the same journey. We have a GJtube placed tomarrow at 9a instead of his Gtube. I would like any advice on how to care for a GJ that you could give me.

A: Feeding tubes can be over whelming at first. When Liam came out of surgery for a Gtube I was petrified to hold him because I thought Id hurt him. It took me weeks to realize I could hold him like a normal baby. And when it came time he did pull out the tube, he acted like nothing happened.

*As for care: keep the site cleam. Use a wet wash cloth to clean the area and keep it as dry as you can. Our medical supply CO provides us with split 2x2 guaze to use around the tube but I found that they don't work very well. They didn't soak up all the leaking fluid and the pad itself would be drenched in no time. The guaze had to be changed every few hours or they would just contribute to irritating the skin. I ordered a few Gtube pads a few weeks ago and within 2 days I saw a HUGE improvement. Check out Sew Amazing Creations. She makes really awesome tube pads at the cheapest price on the market. Only $1 per pad! http://www.facebook.com/SewAmazingCreations

*The most imortant thing with a GJtube is that you do NOT want it to spin. If it spins the J port could back out of the intestines into the stomach defeating the purpose of the GJ. Again the best thing I found to keep this from happening is the Gtube pads.

*Keeping your child from pulling out tube is a challenge but it is possible. We used to think a onsie would prevent Liam from pulling out his tube but last August we learned how very wrong we were. He was able to pull it out right with no problem whatsoever. Tummy belts work really well because the child cannot grab ahold of the tube with their hands and yank on it. I have this problem with Liam. There are many places online where you can order these but they are costly. Decorative yes but I know I cant afford $20 to $40 for one. Cherubim has a inexpensive tummy belt that works really well. Its stretchy and has built in velcro that makes it super easy to get on your child. They run $8. http://cherubim.storenvy.com  You can also use an ace bandage. The extensions are another issue. We use POSEY's (those things the hospital uses to strap on your little ones Pulse Ox) to strap the extensions to Liam's leg. It requies two now that he's bigger. When he was shorter and skinnier we were able to use one and strap them to his ankle. Works like a charm. We also thread his enstensions through his pant legs so it hides them from him.

*Pump feeding and mobility are a daily issue when you have an active one like Liam who just cant sit still. We figured out that we can put the pump and bag into its portable backpack and strap it to his walker allowing him to roam the house at his pleasure. Allowing him to free roam and crawl around without getting too far away from the pump is an issue. We have to just watch him and keep him near the pump or follow him around with the pump. As he's getting older we've noticed that he somtimes listens when we tell him to stop as he's crawling too far away but he also loves to ignore people. The other thing we've notices that when he's getting too far away and it pulls the tube just slightly he feels it and stops himself from going further away. He knows he doesnt like the pain. I think that as they get older it gets easier on everyone.

Q: My son has had a Gtube since July. We have had nothing but problems with it since his 6 week post op appointment. It has leaked, his skin is being eaten. They want to put in a GJ in cause he's throwing up past his Nissin and is failure to thrive.

A: Thats how Liam is. His tube leaks all the time. The Gtube pads are the best thing Ive found. They are thick so they pull the tube taunt against the inside preventing fluid from leaking through. Thats something the guaze doesn't do. We've tried all kinds of creams the GI prescribed but the best thing was to keep it dry.

Q: What problems have you had with the GJtube?

A: The main issue is that for some reason his GJtube actually desinigrates. The ports pop out because of this and his J port line has gotten clogged many times. We're not sure if its Liam or the way these tubes are made. Theres nothing we can do to prevent the tube system from falling apart but we can prevent it from getting clogged. Once a week we have to use soda, we use Pepsi but you can use Coke, to clean the Jport. We use 6 to 8 mls of soda, inject it into the J extension then let it set for atleast 15 to 20 minutes. Then we can go back to using it as normal. These are orders via our GI. Because its such a small amount it won't hurt him. And Ive monitored him after and theres no hyperness are anything else we've noticed after the soda gets into his system.

Liam's first feeding tube was an NG tube in the NICU. Because of the Cpap machine they have to put it in through the mouth. The second time he got his NGtube was in September of 2011.

GJtube Button

 

Princess Alexandria Update

If you've all been keeping up on Facebook you know that Princess Alexandria got sick and ended up in the ICU on bipap. They said she'd be there for several weeks. She finally got out of ICU and onto the regular floor on just oxygen. Everyday she was getting better and stronger. Today mom posted that Alexandria might get released tomarrow. Make sure you don't say it outloud so that Alexandria cant hear you because these CDH babies have a communication line going. As soon as its said that they might go home, they tend to pull tricks that ends up in more time at "club med". We're praying for you Princess and can't wait to read the post that says your home <3 <3 <3

Feeding Tube Awareness Week

It's feeding tube awareness week again. Time to spread awareness as well as facts. Time to break the stereotypes.

What do I hate most about the feeding tube?
The stares I get from strangers when I take my son out in public while on his feed. He's only 18 months now but soon he will be old enough to recognize the looks of strangers and those looks are going to make him feel different, out of place, and maybe even like a "freak". As it is I get glares, questioning looks, and looks of distaste from strangers who see Liam on a feeding tube. No child, or parent should have to deal with this stress.

Commonly asked questions:

Why does your child need a feeding tube?
The requirement of feeding tubes can vary from a medical condition, failure to thrive or many other reasons. In Liam's case he was Failure To Thrive (FTT). He couldn't eat enough orally to keep up with the additional calories his body required to grow and thrive. He would get tired halfway through a feeding, be breathing fast and just fall asleep on me. This is the case for many infants with or even without other medical conditions.

How long will your child be on a feeding tube?
This is a question I get asked a lot. Its hard to say how long a child will require a feeding tube as it depends on the child. Every child is different and has different needs. In Liam's case it started out with the doctors thinking he would only need his feeding tube for a year. Then the time line changed to possibly age 2 when he got his Gtube. Now that he has a GJtube and has a oral aversion to food theyre thinking he will need it 4 more years. When I get asked this question I simply respond "He will need the feeding tube until he is able to eat by mouth and gain weight without using the tube." There is no set timeline as to how long a child will need a feeding tube.

How many types of feeding tubes are there?
NG
G
NJ
ND
GJ
J
TPN
(Click here to find out more about these)

The Feeding Tube Awareness Foundation offers a lot of information about feeding tubes and spreading awareness.

Lets use this week and spread awareness any way we can. Post on Facebook or Tumblr. Tweet about it, post pics on instagram about spreading awareness. Examples of hashtags you can use: #feedingtubeawareness #i<3atubie #tubielove

If you have any tips on how to prevent feeding tubes from being pulled out, how to keep an active child near their pump or any other tips please share with us. You can post in comments, email us your tips or post on our Facebook page.

NG (Naso Gastric): Runs from the nose to the stomach

CDH Awareness Celebration Balloon Release

We're busy putting together our biggest event yet, the CDH Awareness Balloon Release as part of our celebration for CDH Awareness Week! Congress recognizes March 31st as CDH Awareness day, but this year Breath Of Hope is going for CDH Awareness WEEK! Yes you read that right, WEEK! And S4L is on board with this idea. On Saturday March 30th We will be doing a balloon release in Visalia CA in celebration of CDH Awareness week and to honor CDH survivors as well as CDH Angels. We are also selling CDH Awareness items to raise money for CDH Research. We have the date, March 30th, but we are still organizing the place and time.

 

And for our readers that live too far awar to attend or for whatever reason cannot attend, don't fret, we have an option that allows you to "participate":

 

 

We have CDH Awareness Items available for sale. They are available now as well as at the event.

 

The teal CDH Awareness Macreme bracelet has been very popular and its hard to keep them in stock. They are $10 w/ free shipping. Because its so hard to keep them in stock it could take up to 4 weeks (sometimes longer) for you to get yours. We know the wait isnt ideal but we are very happy that so many of you have stuck with us even through the long wait time.

 

The Bling Awareness Bracelet has had many people interested even though I havent been able to offer teal for CDH Awareness. A few people order pink for their little ones currently fighting CDH or who have survived. This bracelet comes on Clear, Red and Pink only. Still trying to find a vendor that sells teal. They are $10 w/ free shipping and can also take a long period of time to come in as well.

 

 

 

CDH Awareness Teddy Bear's $8 plus Free shipping 5 1/2" tall

 

CDH Awareness Water Bottles $8 plus free shipping Holds 18 oz

 

 

CDH Awarenes Teal Metal ribbon pins $5 plus free shipping

 

 

CDH Awareness Lanyards/badge holder $6 plus free shipping

 

CDH Awareness Suckers 6 for $5 plus free shipping (online price only)

 

CDH Awareness Bandanas $4 plus free shipping

 

 

We also have Teal silicone bracelets $4 each or 4 for $12 plus free shipping.

 

If you are interested in ordering any of these items please email shootingforliam@yahoo.com so that we can send you a PayPal Invoice. Remember 40% of all sales go to CDH Research.