March Of Dimes

I am very proud to announce that S4L is putting together a team and will be participating in the March Of Dimes this year. If you live in or around the Visalia California area and would like to join our team we would be happy to have you. If you'd like to donate to the March Of Dimes cause we'd love that too. You do both at our team's MOD page. 

 http://www.marchforbabies.org/team/t2116850

If you decide to join our team you can also join our teams Facebook group. I created the group to get our team connected. Come on out and join the fun.

http://www.facebook.com/groups/1392222981035451 

Encouraging Words

Being a parent or care giver to a child with CDH isn't easy. On one hand we are very blessed that our loved one is a survivor. We wouldn't change that for the world. But sometimes it feels like the walls are caving in threatening to crush us like little ants. When the walls threaten to fall, and your world threatens to collapse, take a few minutes for yourself. A few deep breathes, a few minutes alone in a quiet room, an ipod in your ears blasting your favorite music, SOMETHING! You deserve it. YOU NEED IT! You need to stay strong through this long harsh journey and to do that you need to take care of yourself. I know it's seems easier said than done. I've been there...am there. To say its tough feels like an understatement at times. And sometimes you just need someone to look you in the eye and say "You got this". So here I am metaphorically looking you in the eye. You got this. You can do this. Your stronger than you could ever imagine. Just wait and see. You got this! <3 <3 <3

-Aubin Bryant

#whenlifegetsyoudown #thewallsareclosingin #inspire #havefight #strength #wordsofwisdom #cdh #cdhawareness #cdhturquoise #S4L #ShootingForLiam #hope 

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)