Proud Of Our Tubie

          I sit here laughing because the gauze came off Liam's gtube and he came and showed me. "Mom mom" he said as he lifted his shirt and pointed to his button. "It's ok Liam your fine" I said. Then he goes and shows his dad "dad dad". "Liam put your shirt down no one wants to see that!" I told him playfully. You see Liam is very proud of his button. So proud he will randomly pull his shirt up and show anyone including strangers. Of course it doesn't effect us because we are used to it. But Liam does this for a reaction so we tend to play with him a little.

          We playfully crunch our noses and in the silliest voice we say "eeewww Liam no one wants to see that but that thing away" and we proceed to tickle him and we all have a good laugh. This is what I did tonight, only as I said this Lanie walked into the room and says "eeww" because she plays the game as well. Only this time Liam runs toward her with his button in plain view laughing every step. Lanie gives him one of her fake screams and then proceeds to 'run away'. Liam starts laughing harder and chases after her. They ran in circles around the living room laughing until they couldn't breathe. Now you have to realize that Liam is a boy who spends 90% of his time in just a diaper because its hot and that just how he likes it. He is very proud of his button and he also enjoys these games we play.

           None of us are grossed out by it in any way at all. In fact these games are what helped him be ok with it because we turned him showing it off into a joke. We take the feeding tube itself very seriously. We never tell him its gross. We only joke with him in a way he gets. The "eww nobody wants to see it" always comes with smiles, tickles and laughter. The feeding tube saved his life and is allowing him to have a more "normal" life.

          Without the feeding tube I don't know that he would have lived to see the age of three. How long could he go on TPN without being a shadow of yourself? That would have meant growing up in a hospital completely. With the feeding tube he gets to do what other kids his age do. He gets to play and run and experience all that any other kid his age gets too. Sure we have to wrap his stomach with an ace bandage at times so that his Gtube doesn't get pulled out but it's all worth it.

          Liam gets to start pre-school this month. He gets to play in sand, go swimming, swing and climb. He gets to laugh and run and grow. With the feeding tube he's finally thriving. He's finally doing well. Sure it was rocky there for awhile but now his feed is dialed in and he's growing. So thank you to the Ancient Egyptian's who started finding alternative ways to feed people who couldn't eat the traditional way.

The following are pictures from Liam's Feeding Tube Journey:

Show Us Your Turquoise Giveaway

The following is copied from our FB page:

Anyone can enter this contest just send us your pic of you wearing wearing turquoise or holding a CDH sign or spreading awareness to enter. By entering you understand that your pictures WILL be posted on our FB page and blog. Prize is being donated by Cherubim (Aubin's personal boutique). This contest is in no way affiliated with Facebook or Breath Of Hope. S4L is doing this contest to get more people actively participating in spreading awareness about Congenital Diaphragmatic Hernia. Winner will be chosen by an random generator (such as random.org or similar) to insure fairness to the contest. We want everyone to have a chance to win. The prize includes:
ONE round rhinestone charm locket
ONE chain
ONE CDH turquoise awareness ribbon
And if the winner chooses to purchase additional charms for their locket they will get 20% off their first order through Cherubim. (Not all charms are shown on their page so ask if your looking for something specific)
Good Luck to everyone and you can start entering today if you wish.
To enter PM us your pics!

To enter head on over to our FB page and submit your photos http://www.facebook.com/ShootingForLiam

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.