2018 Christmas Toy Drive is ready!

(Image is my daughter, Liam's big sister, standing in front of the tree at Children's later year when we dropped off our donations from the 2017 Toy Drive)

Hi all!! Now that school has started and we're all getting into the swing of the new school year, I wanted to let everyone know that our 2018 Christmas Toy Drive is officially ready! I'm excited about this year and the changes I've made. As a reminder.....

What you need to  know for 2018:

1) This year we will be collecting stuffed animals. Because of their softness and huggableness they make a great gift for sick kids. They provide lots of comfort.

2) All stuffed animals must be new. They cannot be used (even gently used). This is a guideline from the hospital. They can't risk exposing kids to any germs, viruses or anything else. Anything donated to us that is used I will have no choice but to donate to Rescued Treasures. Again this is NOT my rule and it's for the safety of these sick kids.

3) All donations need to get to me by the 10th of December. This gives me 15 days to inventory everything and a 15 day window to set up delivery with the hospital.

4) You can contact me on our Facebook Page Shooting for Liam, shootingforliam@yahoo.com or for a quicker response you can email me at my personal email aubinbryant@yahoo.com

Below is a printable flyer for you to share. If you own a business and are planning on having a drop box for donations please contact me so that I can list your site on our facebook page and blog as well as coordinate pick up days and times for donations. 

2018 Christmas Toy Drive

I know its only February (March tomorrow) but I've been thinking about this years toy drive since I dropped last years off at Valley Children's Hospital and I'm making some changes. First I want to thank everyone who donated to last years toy drive. Thank you for helping make Christmas great for the sick kids stuck behind the glass at Children's...

(My daughter Lanie posing in front of the tree at Valley Children's when we dropped off 2017's donations.)

The changes I'm making are simple and sure to make this year's drive reach more kids. Every year I'll pick 1 kind of item that I'll be collecting. This way it's easy to remember what we're in need of, and we can reach more kids than ever. There are also guidelines we have to follow given to us by the hospital.

What you need to  know for 2018:

1) This year we will be collecting stuffed animals. Because of their softness and huggableness they make a great gift for sick kids. They provide lots of comfort.

2) All stuffed animals must be new. They cannot be used (even gently used). This is a guideline from the hospital. They can't risk exposing kids to any germs, viruses or anything else. Anything donated to us that is used I will have no choice but to donate to a local thrift store or to toss.

3) After holidays is the best time to pick up stuffed animals for a fraction of the cost. Easter is coming up and you can get a lot of stuffed animals on clearance getting "more bang for your buck".

4) All donations need to get to me by the 10th of December. This gives me 15 days to inventory everything and a 15 day window to set up delivery with the hospital.

5) You can contact me on our Facebook Page Shooting for Liam or shootingforliam@yahoo.com

6) I'll have a graphic made for you to share soon. Please share our blog post and Facebook post.

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/

Long Term CDH Complications

Not all CDH babies are the same. Each one handles treatment differently. There are many factors to consider for treatment. Babies who had a more severe diaphragmatic hernia may face challenges which can include learning problems, breathing issues, hearing loss and growth problems. Some CDHers have long term or even life long complication.

Some of these complications can include:

*CDH Recurrence- when the diaphragmatic hernia opens up again and needs to be repaired.
*Respiratory Issues- Often times CDHers lungs are underdeveloped due to the abdominal organs being in the chest cavity not giving the lung space to grow. This is called lung hypoplasia. Some children require oxygen. Some children fatigue easily with exercise or have respiratory problems such as asthma that improve with breathing medications.

*RSV- a common cold virus that infects many people. Children born with CDH don't have normal lung development and are very susceptible to RSV. Many end up in the hospital and on oxygen when they contract RSV.

*Pulmonary Hypertension- constricted blood flow to the lungs. It's common in babies with CDH and can persist beyond a few weeks to many months after birth.

*Gastrointestinal issues

*Nutrition and oral aversion- because it takes so much for CDHers to breathe and they tire easily, it is difficult for them to take in everything they need by mouth. In those cases, a feeding tube would be placed.

*GERD- It is common for CDHers to suffer from GERD where their stomach contents reflux into the esophagus. This is treated with acid reflux meds. In severe cases they undergo a fundoplication surgery to stop the reflux.

*Abdominal pain and appendicitis- CDHers don't have the typical intestine flow because their intestines are up in the chest cavity or jumbled up. Surgeons can only place them back into the abdomen and let them work themselves out. It's important to know this in the event your child develops abdominal pain and a appendicitis is suspected. It's important to  know where the appendix is located because it might be in a different spot than is typical.

*Constipation- It's unknown why CDHers suffer constipation frequently but it can be treated with laxatives.

*Bowel Obstruction- During repair surgery the organs have to be manually put back into the abdomen. This can cause scar tissue or adhesions within the abdomen that can kink the bowel. The kink can block the flow of liquids in the intestines called a bowel obstruction.

*Problems with skeletal development

*Scoliosis- CDHers can develop a curve in the spine as they grow. This could be related to differences in lung size on the two sides of the chest.

*Pectus chest wall deformity- CDHers  may develop a depression of the sternum.

*Hearing loss- babies who have been intubated on a ventilator with oxygen, received multiple meds, or were on ECMO are at risk for hearing loss. Regular hearing loss is advised.

*Developmental delay- children who have been ill and hoapitalized for prolonged periods are at risk for delay in normal development. It's important to identify developmental delay early.

2017 Toy Drive

How you can help us give the sick kids at Valley Children's Hospital a good Christmas.

Christmas Drive

This December marks the one year anniversary of when our sweet little lamb became an angel. We are doing a drive in his memory for Valley Children's Hospital.

We want to deliver these packages to the hospital around December 15th and are asking for the following items:

*backpacks or tote bags

*books (for all ages)

*stuffed animals

*blankets (baby-teen)

*small toys

*journals or notebooks

*coloring books or activity books

*crayons, color pencils and pens

*toiletries (NICU parents)

*tethers and baby toys

*baby socks and hats

*on the go snacks (granola bars, protein bars, etc)

These are just some ideas of the kind of things we'd like to include in our packages. We are putting together care packages for newborn to age 19 as well as parents in the NICU. Often times parents are too worried for their babies that they forget to eat themselves or even pack the essentials like a toothbrush or hairbrush. Adult coloring books and puzzle books are a great thing for NICU parents as well because often times there are long stretches of time when they cannot hold their baby so they just sit at their side These items would give them a much needed break as well as relieve some stress. 

We are also having an online Jewelry in Candles party to raise money to purchase items for these care packages. This party will be active until 10/09/2016 and 100% of the commission is going to buying more items for children's hospital. Click here to shop our Jewelry in Candles party

If you'd like to donate items, please contact us on our Facebook page or email us at shootingforliam@yahoo.com

A care package we made for a family who was in the NICU at Children's hospital August 2016.

Our donation to Children's in memory of Liam in April 2016.

Just some of the items we donated in April 2016.

October 2012, our tethers for teethies drive. 

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 

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 )