Kayleigh's Journey

From Hannah, Kayleigh's mom:

When I was 20 weeks pregnant I found out I was having a lil girl. I was super happy because it was the first girl for me. The next appt 4 weeks later they found some things that didn't look right in the ultrasound. The Dr came in and had informed me and my mom that she had a birth defect. Dr said she is surprised we could tell so early in my pregnancy, most the time we can't tell till towards the end of the pregnancy or after the baby is born. I was in shock devastated and hysterical. I was referred to a Dr in Wichita. Me and my mom went and they looked at ultrasounds and my records only to inform me they couldn't help that my best option would be going to Kansas City to children's Mercy. We got a appt and more ultrasounds. Me and my family were just happy we found Dr who could help save my daughter.

We made up a birthing plan so that closer to the end of my pregnancy I could deliver in KC at children's Mercy. Drs informed me that if I delivered in Salina ks where I live that her chances would be low. Her due date was 05-08-15. She was born 03-19-15. That is 50 days early, 7 weeks 1 day early. I thought I was just in pain for getting my house ready and lifting and moving heavy stuff but 2 hours passed the pain progressed. I went to the hospital to find out I was in labor. I freaked crying scared u name it I was a wreck. Dr promised they would make sure my lil girl got the best treatment. An hour passed Dr came back in to inform me she moved and is breach and I needed emergency c section. Again I freaked. 7 hours in labor and finally Kayleigh Mae Jenette Grawberg was born they immediately took her to intibate her to make sure no air got in her lungs. We were waiting for the flight team to show up from KC. They showed up got her ready to be life flighted to KC. I was a nervous wreck. I couldn't go with her due to having c section and having to stay in the hospital. 1 1/2 days they let me go early due to circumstances. When her dad and I got to children's Mercy they informed me she was stable doing good on the ventilator but couldn't do surgery till she got a lil bigger only cuz if she needed the ecmo machine and they did surgery right then it could kill her so they waited 2 weeks and was able to do surgery.

When they got in there more was in chest then thought they put things back where they needed to be and patched the hole. Surgery lasted 3 hours. She was a trooper she never had to be put on the ecmo machine and did very well. She did have to have 2 blood transfusions. Other then that she did very well. 4 weeks later we got told she could come home we were happy scared nervous. Both me and her dad had to spend the night due to them needing to tell us everything we needed to know and show us what to do in bad situations. She had to come home on oxygen and a pulseoximeter machine. We got her home and we're very happy. She did very well she went thru all her milestones later then a normal child but just worked hard to accomplish them. She turned 1 and I was so happy we made it that far she had only been hospitalized one time due to rsv in that year. When she was 14 months we were at a check up in Salina and had to have x-ray and it showed that her patch had come undone so she had to be taking back to KC. When we got there she had a xray and they gave me the best news that it had not come undone that not every one knows what to look for or how it should look when one comes undone. We got to go home. Dec 30 2016 she got sick with rsv again and pnemonia. She was hospitalized for a week, got better came home and is doing everything a normal child would do. She is now 2 and I can't be happier. She is the highlight of my life. She makes things interesting and fun. She very out going and is our baby. I know we are not out of the woods and probably never will be but we go day by day and make every day count with our lil girl.

You can follow Kayleigh's Journey on her Facebook page:

https://www.facebook.com/kayleighsjourney15/

It's Never Just A Cold

Imagine you pick your kid up from school one day and they complain of not feeling well. By morning their suffering from a cold. Snotty nose, cough, fever, no appetite (maybe even some vomiting, and no energy at all. It's just a cold right? They'll be fine after it runs its course. But your kid is utterly miserably and therefor so are you watching them suffer. You think "ugh it's "Johnie's" fault my baby is sick! Why couldn't his mother of just kept him home!". Each day your kid wakes up they seem worse. You finally break down and take them to the doctor or urgent care because your doctors office is too busy to see them. You carry your lethargic baby into urgent care, check in and sit to wait to be called. Then look down and see your baby is turning blue. Short version, they rush your baby to ER as you follow behind. Doctors take lung X-rays and ultrasounds of your babies heart but suddenly there's no time to wait for results because your baby starts having seizures and their heart stops. They do all they can but they can't safe your baby. Your world stops. "But it was just a cold. Just a cold" you keep saying to yourself.

You might say that story is a bit far fetched. At one point in my life I was very young and very naive and I wouldn't have believed it either. But there's nothing far fetched about the story above because that's my story. That's how I lost my son. That's how so many other families have lost their children. Why? Because people won't stay home when they're sick. They won't keep their children home when they're sick. Its never "just a cold". Each body reacts differently to viruses. A healthy immune system can fight off a cold no problem. Others end up in the hospital or in ICU and even dead. What you think is "just a cold" could easily be RSV or another virus with similar symptoms. I lost my son a year ago because someone with "just a cold" wouldn't stay home. How would you feel if it was your baby? Look at their sweet faces and tell me how you'd feel if it was them? Please stay home if your sick. Keep your kids home if their sick. Wash and sanitize your hands regularly. Take your vitamins. Tell others to do the same.

Liam Michael Bryant 7/14/11-12/15/15 taken because he caught "just a cold".

Links to help you fight the germs:

RSV Symptoms and prevention

10 Tips to prevent a cold or flu

#childlossawareness #cdhawareness #stopspreadinggerms#itsneverjustacold #liammichaelbryant

2016 Christmas Drive Success

On December 22nd we braved the fog and the hour drive to Valley Children's to deliver gifts just in time for Christmas. Thank you every who donated to our annual Christmas drive in memory of Liam Michael Bryant. We delivered the following with smiles on our faces and joy in our hearts because we know that these gifts will put smiles on the kids in the hospital:

59 complete care packages

Plus the following loose toys: 

16 bubble wands

5 tea sets

1 nerf sport toy

6 coloring books

29 stuffed animals

If you don't see the items you donated listed above, it's because they were put into a care package. Each care package included at the least:

1 toy

1 stuffed animal

1 book or coloring book

crayons, color pencils or markers to go with the coloring books

Some care packages included blankets

NICU care packages included stuffed animals, socks, hat, book, blanket and toothbrush for a parent.

I know each kid loved every toy, every blanket, every stuffed animal. Thank you for helping us help make their Christmas's a little brighter.

(Involving kids in our mission is something I strive for with each event/donation. Liam's big sister Lanie, the blonde in the middle, is always involved in every aspect of Shooting for Liam. From picking out items to donate, to putting together care packages and planning picnic's, she's right there by my side.)

We are already working on next years drive so if you didn't get a chance to donate this year, know you still help with next years. We are now accepting donations for 2017.

Thank you everyone for helping us do something great in memory of our sweet little lamb.

In Memory of Liam Christmas Drive

Liam was born on July 14th of 2011.

He spent 90% of his first year in the hospital.

80% of his second year in the hospital.

50% of his third year and so on.

He spent the majority if his time at Valley Children's hospital in Madera, CA.

It's 65.6 miles from our front porch to the hospital.

Takes around an hour and 3 minutes to get there typically,

if you don't hit traffic.

The hospital is basically in the middle of nowhere.

To get to any fast food restaurants or the Target you have to get back onto the freeway.

Nothing is within walking distance.

It's a little over 12 miles to the nearest store (Target) if you need supplies.

I would drive to Target and stock up on foods that didn't have to be refrigerated.

Foods like:

Soups

Cup of Noodles

Peanut butter sandwich supplies

Ravioli

Chips

Crackers

Soda

Bottled ready to drink coffee

Granola bars

All cans had to be pop top and come in a bowl that could be microwaved.

I kept a bowl with me for soups.

These were the foods I lived off of for the majority of 4 years.

If I wanted clean clothes I had 2 options:

1) Have someone from Home bring them up when they come to visit.

2) Go to the nearest laundromat (16.9 miles away) and be gone from Liam for a few hours.

90% of the time when Liam was in the hospital he was vomiting.

Many times he would go through every blanket I packed him within 24 hours.

When a blanket and a treasured stuffed animal are the only things giving your baby enough comfort to sleep for a few minutes or stop crying for a few minutes,

and you have nothing clean left,

you stay can become way more stressful that it really needs to be.

There were a few times when he would have just vomited all over his last clean blanket,

he was in tears and I was close to tears.

I was rocking him when there was a knock on the door.

The door would slowly open and a smiling face popped their head in and said,

"I'll just leave this right here for you".

Then they walked out and closed the door behind them.

I walked over to the counter and found a new soft blanket sitting on the counter.

My jaw dropped.

I picked up that what felt like a treasure worth a million dollars and handed it to Liam.

He almost instantly stopped crying and I was able to rock him back to sleep.

As I watched him sleep,

I cried.

That blanket meant the world to us and we were given it because someone kind had donate a lot of blankets to children's for the kids.

Without that donation we would of had days with no sleep or comfort because it wasn't until 4 days later my husband was able to bring us clean blankets and clothes.

Hospital stays are extremely stressful and made worse when you have to eat junk,

don't have clean clothes are access to a laundromat.

I would pack Liam as many toys as I could but after a few days they would be boring for him.

I would have to ask my husband to bring us new toys every time he came to visit.

Being separated from family is also extremely difficult.

These stays are made a little easier when you have the items that comfort your child and clean clothes for yourself.

I hope that with this Christmas drive in memory of Liam that we will be able to offer that same comfort to these kids who are sick and stuck in a hospital during the holidays.

If we are even able to take these kids minds of being sick for just a few minutes,

than it will be worth it.

We are looking for donations of:

Stuffed animals

Blankets

teethers

books for all ages

toys for all ages

coloring books

crayons

journals

pens

backpacks and tote bags

and much more

Will you help us?

Contact us on our Facebook page Shooting for Liam

Email shootingforliam@yahoo.com

Spreading Awareness at Liberty School Carnival

Last night we had the opportunity to share CDH awareness and child loss awareness with our community at Liberty school's fall carnival. We set up a table with lots of flyers:

*What is CDH?

*What it's like to have a child with CDH.

*Our Christmas drive for Children's hospital.

*Busines cards

*Information on Sent from Heaven

(Child loss)

*Information on Sent from Heaven's drive.

We handed out lots of flyers and business cards. We also got to talk to people about CDH, Liam and Sent from Heaven It was a blessing to be able to share so much awareness. Lots of people had never heard of what CDH was and we were more than happy to explain to them. Lots of kids were interested in learning as well. The older kids took quite an interest in earning what CDH was. I was surprised. Of course we had a huge pumpkin filled with candy for the children who walked by our booth. 

You can go to Sent from Heaven's blog or check out their facebook page. My friend Amanda Lamb and I have been working hard on getting Send from Heaven set up and doing all the legal paperwork to become a nonprofit. We provide specialized care packages to parents when they lose a child. Also our blog has online resources and we are adding more all the time.

Child Loss Awareness Month

October is child loss awareness month.

We would like to take this month to remember those CDHers who grew wings.

If you would like to share your story,

blog or facebook page,

please contact us so we can add you.

If you have any advice for those whose friend or family lost a child,

please message us.

Remembering all the CDHers that grew wings and the families who lost them.

facebook.com/shootingforliam

A few weeks ago a friend approached with a idea to start a nonprofit.

This nonprofit is to give care packages to parents when they lose a child.

We are also working on our blog to share other peoples stories of loss,

as well as other resources.

If you would like your story posted on our Sent from Heaven blog as well let us know.

Sent from Heaven is for all loss,

not just from CDH.

Also check out Sent from Heaven's facebook page.

Kimberlee

Last week,

I picked up this donation of toys from my friend Diana.

Diana donated this to our care packages in memory of her daughter,

Kimberlee.

Kimberlee was diagnosed with Acute Myeloid Leukemia

on November 8th of 2009.

Kimberlee was 6 months pregnant at the time.

She had chemo twice before she gave birth to a healthy baby.

Kimberlee underwent a bone marrow transplant on May 25th 2010.

On August 31st 2010,

they were told that the Leukemia had returned,

with a vengeance.

The doctors said there was nothing more they could do,

and Kimberlee was given just 6 months left to live.

So they returned home to live out what time she had left.

On September 27th 2010,

Kimberlee lost her fight against Acute Myeloid Leukemia.

Diana donated this precious gift of toys for the kids at Children's Hospital,

in memory of her precious daughter Kimberlee.

Acute Myeloid Leukemia is rare with less than 200,000 US cases per year.

It's a type of cancer of the blood and bone marrow with excess immature white blood cells.

AML progresses rapidly,

with myeloid cells interfering with the production of normal white blood cells,

red blood cells, and platelets.

Learn more about AML by clicking here.

Life After Loss

 

 

I'm not sure how others handle the loss of a child.

And I know not every piece of advice is good advice.

But one piece of advice stands out above the rest:

 

"The pain never goes away,

it only gets easier to hide"

 

Its been 17 week and 6 days since my Liam grew wings.

Some days are harder than others,

but every day is hard.

 

I shouldn't of had to say goodbye to my son,

who was only 4 years,

5 months,

and 1 day old.

None of us should ever have to say goodbye to our children.

None of us should have to see our children struggle,

or fight for their right to just live.

 

But we do.

Because of Congenital Diaphragmatic Hernia.

 

Sure we know the statistics:

1 in every 2500 liv births are effected by CDH.

Only 50% of babies survive.

Most that do suffer life long medical problems.

 

But statistics are just numbers,

until we have to live them.

 

When we were in NICU with Liam in 2011,

there were 4 CDH babies fighting.

Only 2 of those babies made it out of NICU.

 

Liam fought every day of his short little life.

And even though we knew there was always a chance we could loose him,

we just thought as each year passed we were closer to being out of the woods.

We didn't expect this.

 

CDH doesn't just cause problems with the lungs,

heart,

or intestines.

It messes with the immune system and weakens it.

And when you have a child who is failure to thrive and unable to gain weight,

their immune system is even more weaker.

 

A "simple" cold would land Liam in the hospital and on oxygen.

He fought frequent pneumonia's,

colds,

flu's,

RSV,

until he caught a virus he could no longer fight.

 

He battled this virus for two weeks.

It would seem he got better after 3 days,

then sick gain.

Basically he couldn't fight this off any longer,

and his body gave out.

This virus caused a pulmonary embolism,

which took his life.

 

There hasn't been a day without tears.

Some days I can go out into public and hide my sadness,

my anger.

Other days all I can do is cry.

 

Liam's life came down to numbers and boxes.

How long he lived.

How much it cost to cremate him.

The urn,

a wooden box his ashes forever rest in.

The number of boxes his stuff got packed in.

Boxes and numbers it seemed was all anyone cared about.

Except me.

 

Because no one on this planet knew Liam like I did.

 

And I think all mothers feel like that.

 

So why do I continue to spread awareness when I could just walk away from it all?

Because I can't walk away.

I don't want some other family to be blindsided like we were.

Because someone could learn about CDH from something I do or say,

and that leads them to spread awareness,

and possibly one day someone will invest in research and make a difference.

No it won't effect me since my son is gone.

But one day it'll make a difference for our great great great grandchildren if we're lucky.

 

I don't know what makes anyone feel "better" about their loss.

I don't know how others cope with it.

I just keep putting one foot in front of the other,

moving forward in hopes that one day things will just click,

and one day I'll "feel better".

Out Of Suffering

What Does CDH Mean To You?

We want to know what you think of when you hear CDH.

How has this journey changed you?

For me, CDH means strength.

You have to be strong to endure this journey.

And if you didn't start out strong,

it made you strong.

"You never know just how strong you are until you have to be"

Share with us your stories.

Your memories.

The ups.

The downs.

What CDH means to you.

Let's spread #cdhawareness

CDH awareness week is March 25-31st

Shooting For Liam

Liam's personal FB page

Breath Of Hope

CDH Awareness Tshirts

With CDH awareness week only 49 days away we started our tshirt fundraiser.

Please help us spread awareness by buying one of these great shirts.

The money helps us raise awareness to our local hospitals and community.

This fundraiser will last only 2 weeks so get your shirts while you can!!

Please spread the word and the link.

The money raised will be going to print awareness pamphlets,

items to comfort the kids admitted into the hospital,

and spreading awareness to our community.

Here's what we wrote on the fundraiser page:

We are raising money to spread awareness to our local hospitals and community about Congenital Diaphragmatic Hernia, a deadly birth defect. My son was born 7/14/11 with CDH and survived. CDH affects 1 in every 2500 births. There is no known cause. 50% of babies born with CDH do NOT survive. Most people have never heard of CDH unless they or someone they know has been affected. We want to change this by spreading awareness as well as helping CDH Families. 

Check out the fundraiser at http://www.booster.com/s4lcdhawareness

Gastropharisis

What is Gastropharisis?

Liam's been diagnosed for since he was a few months old with Gastropharisis. Like with all things I normally re-research everything Liam's been diagnosed with to  see if any new info has popped up. Lately his Gastropharisis has been on my. It most likely stems from my frustration that Liam will only take a few bites of food at a time before being done. 

I got my info from the Mayo Clinic website during this search.

What is Gastropharisis? How does it affect you? 

It's not always clear why someone has Gastropharisis but in many it's believes to be caused when the vagus nerve is damaged. The vagus nerve controls the stomach muscles and helps manage the digestive tract. It' sends signals to your stomach telling it to contract to push food through. When the vagus nerve is damaged it can't send signals to the stomach. Damage can be caused by disease such as diabetes or abdominal surgery. 

What are the symptoms of Gastropharisis?

Vomiting 

Nausea 

Feeling full after just a few bites 

Abdominal bloating

Heartburn or GERD

Changes in blood sugar

Lack of appetite 

Weight loss and malnutrition

There is no cure for Gastropharisis. Changes to diet it meds can sometimes help. Gastropharisis can cause complications such as:

Bacterial growth in the stomach due to food sitting there. 

Food left in the stomach can harden causing a hard mass called a bezoar. These can be life threatening. 

Blood sugar fluctuations. Poor blood sugar makes Gastropharisis worse. 

In Liam's came his vagus nerve was damaged. The doctors aren't sure if it was due to his birth defect CDH or the repair surgery. They are however sure the nerve was damaged. Liam recently in the last 6 months was weined of his mobility med, erythromycin and takes his acid reflux (GERD) meds as needed. 

Liam will take only a few small bites of food at a time. Some days more than others. He has his ups and downs. He can be fine for a few days, weeks or months then get hit with severe vomiting symptoms and have to be taken to ER for fluids and IV zofran. He has random sparatic stomach due to his Gastropharisis. I'm still "new" to this so I'm unsure what the future holds as far as eating is concerned. I've had little contact with those who've had Gastropharisis for years and little idea on how if this only gets worse over time or if in some cases it does indeed get better. 

Considering there is no cure I am sure that Liam will not be miraculously cured of Gastropharisis anytime soon. The good news is that after changing his feeding tube from a Mickey to an AMT mini one ballon less his episodes of vomiting have been cut by 90%. 

I am reveling in the fact that this time last year we made the switch in tubes and it's made the world of a difference. He went 8 months with NO hospital stay! I tiredly believe it's because we switched tubes because it was an instant change in him. This time last year Liam started eating and showing interest in foods. It was a slow and steady start (although at the time it felt he was diving in head first and eating as if it was an everyday thing for him). That was my small miracle. 

People live with Gastropharisis everyday, some their entire lives with minimal flare ups and episodes. It's manageable. I may now know if or when Liam will decide to eat and ditch the feeding tube but I do know he can live a fairly normal life. And for a mom of a special needs child, fairly normal is perfect! ❤️❤️❤️

"I may have Gastropharisis but Gastropharisis does NOT have me"

Sensory Play: Christmas

Kids that spend a lot of time in NICU or the hospital tend to have sensory issues.

CDHer's are no exclusion.

In fact many survivor have sensory issues.

Parents find that these issues are hard to overcome.

Our survivor Liam is no exception.

Liam still has sensory issues at 3 years 4 months.

We've worked very hard with him to work through these issues,

and hard work is the only reason he's doing as well as he is.

For the majority of his Liam's life,

he hated textures.

If it wasn't super soft he refused to hold it.

He hated the feel of playdoh,

sand,

uncooked rice and noodles.

We worked past this by playing with these things over and over again.

We still have a lot of work to do.

Sensory bins are awesome.

I love how there is so much in such a small area.

It's meant to stretch their ability to be handle the stimulation with each passing use.

With Christmas coming up I thought to do a Christmas themed sensory bin.

In my Google search I found many I like.

This winter themed sensory bin is so simple and cheap.

Everything in it came from the Dollar store and added up to $5!!

I adore it. I found this at Snails and Puppy Dog Tails Blog.

She has several amazing sensory bins that I am looking forward to making for Liam.

This snowy sensory bin looks like so much fun!

We found this gem at Blog Me Mom

I feel like this is a two for one deal.

Not only so the kids get the sensory aspect out of filling the ornaments,

but when they are done,

you get some great ornaments for your tree.

I love that they used beads as well as sand to fill these up.

It gives me a great idea to use other materials as well.

I found this AMAZING idea over at Little Bins For Little Hands.

Love this sensory bin.

It has some of Liam's favorite things.

Found at Four Little Piglets

We are already so excited for Christmas!

Can't wait till closer to Christmas to do some crafts with the kids.

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

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