3rd Birthday Giveaway Winners!

Comment Number 10: Kacie Spink.

Comment Number 15: Katy Edgington

 

Comment Number 2: Stormye Wommack

THANK YOU EVERYONE WHO ENTERED!

 Kacie, Katy and Stormye, please check your Emails for details on how to claim your prize!

3rd Birthday Giveaway!

Happy 3rd Birthday to Coping With Laryngomalacia, Inc! 

To celebrate we will be giving away 3 Believe bracelets!

Our Believe bracelets are handmade by Christine at Loreley Jewelry,

one size fits most adults. 

There is always a reason to believe the good will follow the bad. 

Giveaway Rules & Terms:
-Open to the public, worldwide
-One entry person
-You do not have to have a baby with LM, TM or BM to enter!
-Each entry must provide a valid Email address
-3 random winners will be chosen via Random.org
-Each winner will have 3 days to respond to CWL with shipping information

How to Enter:
-Comment on this post with your name, Email address and a Happy Birthday Wish for CWL.
-Like Coping With Laryngomalacia, Inc, AND  Loreley Jewelry on Facebook.

THIS GIVEAWAY WILL BE OPEN FROM July 10, 2013- July 15, 2013

Breastfeeding Your Pint-Sized Powerhouse

 

Photo credit: Rambling Photography, LLC.

Breastfeeding.

 The word sounds so glamorous while your pregnant... then four days post birth, 

it's 2am and your trying to get a screaming, hungry newborn to latch on. 

He latches on and the pain is so excruciating your pretty certain you just saw stars. 

As your milk fills his small belly, he begins to choke. 

His tiny arms are flailing and  he is gasping for air.  

You both sit there and cry, you wanted to breastfeed so badly. 

Does that story sound familiar? 

It does to me, I have been there... twice.

Breastfeeding is challenging enough then add an airway defect, 

it gets a whole lot of complicated, very quickly.

As the exhaustion builds and emotions rise, 

finding outside support and help is a feat within itself.

Once you have the proper education, help and support...

breastfeeding can be one of the best things to ever happen to 

you and your Pint-Sized Powerhouse!

YOU CAN DO THIS.

First thing, take a nap.

Even LM Supermoms can not think clearly on two hours of sleep.

Let Dad or Grandma watch baby for a few hours while you regroup and rest. 

Feed yourself, well.

Recovering from birth and making milk are two very draining events on the body.

Give your body the right fuel while increasing your 

iron intake to help with postpartum bleeding. 

Every time your baby nurses, drink at least 8oz of water.  

Get comfortable.  

No one likes eating over the kitchen sink!

Find a relaxing, comfortable space to nurse. 

Some moms like nursing in rocking chairs while others enjoy nursing in bed.

Have a small box next to you with all your must-need items:

cell phone

paper and pen

chap stick

water/snack

nipple cream

burp rag

breastpads

magazine/book

t.v. remote control

breastfeeding support pillow

heating pad for post-birth cramping 

Play relaxing music and put your feet up. 

Ask for help.

The "raising a baby takes a village" saying didn't come out of nowhere. 

Ask close family and friends to care for older children, pets and the house. 

If family and friends suggest helping by feeding the baby, gently remind them

you and your baby are working, very hard to establish a successful breastfeeding relationship right now. 

There will be plenty of time for play-dates with Grandma in the future! 

Find a good ENT.

You will have a very hard time continuing your breastfeeding relationship

 unless the LM is treated properly.  

Reflux medication and/or surgery may be needed. 

Rule out other issues.

Rule out tongue tie, lip tie, forceful letdown and other causes of breastfeeding trouble. 

Get a good breast pump.

Even if you plan on exclusively nursing, you still need a good pump. 

Reasons to pump:

to help with mastitis/plugged duct

to donate milk/build freezer stash

to give yourself a break

Not all pumps are created equal, do your research. 

While a double electric breast pump may work well from many women,

 some respond better to a single manual pump.

DO NOT base your supply on your pumping output. 

If anyone tells you, 

"you only pumped 2oz the past two sessions, you are not making enough for your baby."  

let them know they need to brush up on their breastfeeding education.

CWL Founder & President Stephanie Hueston's Pint-Sized Powerhouse Max, still nursing at 14 months old.

Formula is not bad. 

Formula has saved many babies lives over the years.

In times of need, it is a wonderful thing.

When used correctly,

 formula can help many breastfeeding moms overcome their challenges.

Supplementing with formula.

Formula should only be given after the baby nurses on 

each breast and is still showing hunger cues.

Breastfeeding is all supply and demand. 

If your baby does not demand more supply, your body will not make more supply. 

Thickening breast milk without formula.
There are other options to thicken breast milk without using formula.

Position is everything.

From relieving a plugged duct to correcting a poor latch, 

Nursing positions can make or break a breastfeeding relationship.

As your baby gets older, he will create new nursing postions--oh the joys of nursing a toddler!

Until then, you are responsible for finding what works best for YOU and your baby. 

Many LM, TM, BM babies do well with nursing upright. 

Dealing with negative feedback.

There will always be someone who has to rain on your parade.

Breastfeeding makes some people uncomfortable...

remember, it is their problem--not yours.

You are doing the very best thing you can for your child.

You are providing him with amazing nourishment, security and creating a bond unlike any other.

If someone has a problem with your boobs feeding your child... 

tell them to go walk around Victoria's Secret.  ;)

Low/no milk supply options.

If you are still having low or no milk supply after working with your Lactation Consultant, using human milk donations may be a good option for your baby. 

Eats on Feet

Human Milk 4 Human Babies

are both great resources.

Also, if you have a close friend/family member who is nursing...

do not be scared to ask her for milk..99% of the time she will be honored to donate.

It's not always going to be this hard.

From porn-star sized breasts to bleeding nipples the idea of being at the park and whipping out your breast to feed your baby may seem like a lifetime away. 

You will get there.  

Your breasts will return to a more non porn-star size in about six weeks. 

Your nipples will heal as your baby (and you) become better with latching. 

Your baby will not always nurse for 45 minutes every 3 hours and as your baby learns how to crawl and play...you will have to remind him to take a break and nurse. 

Most importantly, the choking from the laryngomalacia 
will subside as your baby gets older. 

More resources:
The Leaky Boob
KellyMom.com

Breast milk can also be fed through a feeding tube and by a SNS .

CWL Founder & President Stephanie Hueston can be contacted 
24 hours a day, 7 days a week. 
CopingWithLM@yahoo.com

Disclaimer:
this post is based on experience only. 
it is not intended to override or replace any doctors medical advice. 
should you have a serious problem breastfeeding or 
your child is having trouble breathing please contact your doctor immediately.

© Coping With Laryngomalacia, Inc. All rights reserved.

Getting Answers: 2013 Research Project- Data Summary

Getting Answers: 2013 Research Project

Coping With Laryngomalacia, Inc.

a 501 (c ) 3 nonprofit organization.

CopingWithLM.org

CopingWithLM@yahoo.com

Introduction

At the start of the new year, CWL launched its first worldwide research project. The project consisted of two separate surveys (one regarding the child and one regarding the pregnancy of the child). 

The surveys were open to all LM, T M, BM families, around the world. 112 people from 34 US states, Canada, Sweden, France, Scotland, Australia, Liverpool, Norwich, England and Ireland all participated in the surveys. Participants had the choice to “skip” all questions and for some questions, could choose more than one response. No one was compensated for their time or responses. All responses were anonymous to CWL.

The Results

Part 1: The Pregnancy

1.The top 3 states/countries with LM, T M, BM mothers and children were:

• California, USA
• New York, USA
• Canada

2. Age at which the mother conceived the LM, T M, BM child:

39% said 25-30 years old

3. Prescription medication use during the pregnancy:

Out of 80 responses, an overwhelming 55 said yes they took medication while pregnant.

The most used medication was an antibiotic followed by an antidepressant.

4. Family history of LM, T M or BM:

88% said there was no family history.

5. Use of hair dye during the pregnancy:

55% said yes, they did use hair dye during the pregnancy.

6. Prenatal vitamin use during pregnancy:

90% said yes, they took their prenatal vitamin during the pregnancy.

7. Did the mother suffer from severe morning sickness (hyperemesis gravidarum):

88% said no, they did not suffer from HG.

8. Participants were asked to rate their pregnancy:

53% said they would rate their pregnancy as low risk.

9. Chemical and environmental contaminant exposure during pregnancy:

48% said they were exposed to smoke followed by 28% said  flu and 26% said mold.

10. Weeks gestation  the baby was born at:

63% said 39-41 weeks (full term).

Part 2: The Child

1.The top 3 states/countries with LM, T M, BM mothers and children were:

• California, USA
• New York, USA
• Canada

2. Gender of baby:

71% said boy.

3. Age at which the baby started showing symptoms:

48% said symptoms were present at birth followed by 39% said within the first two weeks after birth. All participants noted symptoms.

4. Age at diagnosis:

79% said at 0-3 months followed by 16% said at 3-6 months.

5. When diagnosed, what category was the LM, T M , BM:

please note, parents of mild cases usually do not seek out support/education so they would not be aware of this survey.

53% said moderate followed by 33% said severe (needing surgery).

6.Need for reflux medication:

88% said yes, their child needed reflux medication.

7. In addition to LM, TM and BM, other diagnosis the child has:

please note, participants were allowed to choose more than one response.

The top 3 are:

• 78% Gastro: reflux, ulcers, chronic swelling of the airway
• 52% Feeding Problems: Failure to Thrive, need for feeding tube or feeding therapy.
• 29% Other

8. Age the child needed surgery:

80% said within the first 6 months of life.

9. The need for more than one surgery (supraglottoplasty):

73% said no, there was no need for a second surgery.

10.  Stridor improvement:

42% said the stridor improved after surgery followed by 36% said once reflux (GERD) was under control.

Conclusion

After reading the combined data from each survey it is apparent no family history is needed to have a child with either defect, medication use during pregnancy may suggest a link to all three defects and most of the babies are born at full term. Babies seem to all show symptoms at birth or within the first two weeks of life. The survey suggests LM, TM, BM affects more boys than girls and many moderate-severe babies require the use of prescription reflux medication. If the baby requires surgery, it is usually performed within the first six months of life and it is very rare a second supraglottoplasty is needed.The actual number of severe babies to mild babies is still unknown since many parents of mild babies do not seek out support.

Dear You: A letter to a new LM Supermom

Dear You,

So your baby was just diagnosed with laryngomalacia. Can you pronounce it? Don’t worry, I couldn’t either. In fact, it took me three months to learn the correct pronunciation and spelling.

In time you will be able to spell it backwards. You will know more about this defect than you ever  thought possible. You will become someone we like to call a LM Supermom. You will wear this title will honor. It will be a source of strength in the darkest of moments...a reminder that you CAN and WILL get through this.

Having a baby with LM, TM , BM may be one of the hardest journeys you will ever have to walk. And that’s okay. Do not be angry at this journey, it is here to teach you. Let it teach you. If you allow, it will  provide you with a whole new view on life. A more simple, wholehearted , grateful for every breath kind of view. 

Journeys have no end...do not spend your journey full of anger...instead,  spend your time focusing on the walk. Soak in the sunlight wherever possible, remain graceful when your heart is full of worry and always be kind... your journey is hard, that we know but someones journey may be even harder.

Friends will leave and friends will come. Friends will leave because it is their time to leave, not because their intent is to hurt you. Take a deep breath and let them go as beautifully as you let them in. New friends will arrive with hearts wide open. They will know how important a hug and a hot, home cooked meal is. Hug them back, tightly. Be thankful for the future with them.

Your partner, he is scared. In fact, he is very scared. That anger he is showing? That is him letting you know all those emotions you are feeling, he is feeling them too.  It kills him to see you hurt like this... and there are no words to describe the pain HE feels seeing his baby struggle like this. Let him know how you feel and what you need. He doesn’t know what to do. He never thought he would have a baby with an airway defect. You both can survive this but  if he chooses to disconnect and walk away, let him. Holding onto a relationship when its time for it to end will only fill you of anger, bitterness and resentment. Your baby needs ALL of you right now. You will be okay. You will recover.

You will grieve. Grief comes in all shapes and sizes...and it always seems to hit you when you standing in line at the food store. Allow yourself to grieve for the healthy baby you were not given. This is a normal process ... do not let anyone tell you different.

Listen to your instinct. You know your baby better than any monitor or medical test. Let your voice be heard and if a doctor speaks over you--find a new doctor. Get to the best hospital.

Bills can be paid later, your child needs to breathe now.

Walk this journey with grace. There are going to be some high, high mountains to climb and the rain will pour... choose to let the good strengthen you while letting the bad empower you. Every step you take on this journey will leave footprints your Pint-Sized Powerhouse will follow. Show your child there is always a reason to have a Hope...anger doesn’t make life changing decisions  and the good always follows the bad.

You are an LM Supermom for a reason... stay strong and breathe easy. 

Written by: CWL Founder & President Stephanie Hueston. 
To learn more about Stephanie go here. 

Making a Difference Monday: Rambling Photography, LLC.

On July 13, Rambling Photography, LLC. will be giving FREE mini sessions to 

LM, TM, BM families at our 3rd Birthday BBQ!

What a fabulous gift to our families, thank you Rambling Photography! 

Making a Difference Monday: Hookin' It Forward

One bright and cheery day in Middle Tennessee, Karen met Andria. Andria, who was already a crochet wiz, quickly taught Karen this skilled art. The duo began using their talent to help babies and children in need. The first mission was helping newborn preemie babies at Vanderbilt Children’s Hospital in Nashville, TN. Which then lead into helping babies and toddlers recover from airway surgeries due to Laryngomalacia with a non-profit group called Coping With Laryngomalacia, Inc. Karen and Andria have also donated scarves to the 2012 Special Olympics and helped local churches with fundraisers for mission work. One of the newest charity groups they have been working with is Loops of Hope who uses donated granny squares from crocheters around the world to make a blanket for a child who is ill. Charity work is very important to these two, so not only do they crochet for those in need, they also donate a portion of each sale to a charity near and dear to their hearts.*

A portion of sales go directly to CWL. 

Keep up the awesome work Karen!

 SHOP!

Etsy:

 http://www.etsy.com/shop/hookinitforward

Facebook:

 https://www.facebook.com/HookinItForward

*http://www.etsy.com/shop/hookinitforward