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Pint-Sized Powerhouse Grant Recipient : Lyric

Because of Coping With Laryngomalacia, Inc. amazing donors, Lyric Hammons (who was born with laryngomalacia) was able to receive a $100.00 Pint-Sized Powerhouse Grant to help pay her outstanding medical bills.

 

Lyric was born via c-section at 39 weeks old. On the 2nd day at the hospital Lyric had an episode where she was basically throwing up from her mouth and nose and started turning blue in the face. At that time I was told that this was happening due to the amniotic fluid still trying to come out of her system.

On our 3rd day home it happened again and it was so awful. I panicked. I cried. I was so scared as these episodes was preventing her from breathing because the fluid trying to come out was so thick. After calming her down and getting out as much of the yuck (as we called it) we took her to see her pediatrician and once again was told the amniotic fluid story.

Around a week and half of being home I noticed Lyric had this weird airy breathing and it didn't sound right. She was so uncomfortable. The constant crying didn't help. I called and spoke to a nurse and she told me once again it was normal. The mommy in me told me something was wrong with my baby. So I asked to come in. I spoke with the doctor again and told him about the constant crying. I was then told she had colic in addition to the amniotic fluid story.

By the time Lyric was a month we had been to the ER 4 times because she had to be suctioned out due to the fluid being so thick. I wasn't able to get it all out when these episodes occurred. The doctor at the hospital on the 4th visit told me to get a Nose Freida (which did help home but did not prevent the ER trips). 

After the 4th ER visit, the constant crying, getting no sleep, the throw up spells I had had enough. I finally decided to record Lyric. I am glad I did. I made another appointment with her pediatrician and this time I told him I was not leaving until we had some answers. He listened to my recordings of her and finally agreed it was not amniotic fluid and that she needed to see a ENT doctor. He then also prescribed Lyric medicine because now he was saying the constant throwing up was due to a possible reflux condition. 

Finally getting to meet with Dr. Bowers at Children's Hospital has been wonderful. After hearing my story he took a camera and  looked in Lyric's throat and immediately said she had LM and Dysphagia  Due to the force of how she was vomiting he also referred Lyric to a GI doctor. He immediately changed the milk and her reflux medicine.  Life started getting easier at that point.

 

Lyric celebrating Halloween. Photo submitted by Terra Hammons

 

Lyric has has countless ER visits, been scoped twice, she has had a spinal tap, swallow studies and has had to be put to sleep to get her stomach and throat scraped as her ENT and GI doctor wanted a clearer picture of her throat and to look at her stomach in more detail. She is so strong. 

Our insurance doesn't cover the cost of her Prevacid, Nutramigen milk nor the products we use to thicken her foods. I am so thankful I found the Facebook Page. So many mommies with the same issues I am having with Lyric has helped me see that I am not alone.

Lyric is now 18 months and although we are no longer dealing with the episodes; she still has the LM, Dysphagia and reflux. 

Thanks to the donors as the Pint-Sized Grant Program is a blessing to my family. 

Thank you to the founder Stephanie for all of the hard work you do!

Blog post was written and submitted by: Terra Hammons, Lyric's Mother.

Pint-Sized Powerhouse Grant Recipient : Hazel

Let me start off by introducing my daughter, Hazel.  She just turned 8 months old on October 3^rd. She is the second of two little girls in our lives.  When her older sister June was born she instantly latched on like a champ, never had any reflux issues, and was never sick.  When Hazel came into our lives in February we didn’t know what we were in for.

 

Hazel was born via c-section at 39 weeks 2 days.  She seemed to have issues latching on in the hospital but was gaining weight and didn’t get jaundice.  I noticed small squeaky noises coming from her but thought that it could be normal from the suctioning of her mouth and throat following her delivery.  We were discharged from the hospital two days later and had her newborn check up that Saturday at her pediatricians’ office.  Since her regular doctor was out for the day we saw one of the partners.  I asked him about her squeakiness and he said it was normal so I left it at that.  

Hazel in the hospital.

 

The following Tuesday we were having newborn pictures taken and she just could not calm down.  She was starving but when I would go to nurse her she would be in hysterics.  She would choke.  She would struggle to catch her breath.  I made an appointment with our lactation consultant that day who diagnosed her with a tongue tie.  She also said that she had an “oral aversion” from the aggressive suctioning at birth and didn’t know how to take a bottle, let alone latch on to a breast. 

 

After many tears and a long struggle in the office, we were sent home with instructions on how to teach Hazel to latch properly.  The following two days were terrible.  We couldn’t get her to eat without choking and the squeaky noise we noticed at birth was noticeably louder.  I took voice recordings on my phone of her nursing over night just in case I would need to play them for her doctor.  That Thursday I was attempting to nurse her when she choked again, this time struggling to breath and her lips turned blue.  It was at that moment that I knew something wasn’t right.  This was not normal. 

 

I called her doctor’s office and explained to them what was happening.  The nurse said that because she sounded congested to try a saline rinse and to suction and that that would help.  He said to let them know in a few days how she was doing.  I insisted on her being seen that day so they fit us in.   She was 8 days old.  When we finally saw her own doctor and I played the recordings for him he instantly said, “This sounds like laryngomalacia or trachomalacia.”  I had no idea what that was.  

Hazel during her sleep study.

 

He proceeded to ask what felt like a million questions.  He sat there and held her tiny body on his lap and watched her chest rise and fall with each breath she took.  He asked how often she was choking with feedings and I told him every single time.  It was then that he referred us to Children’s Hospital and Medical Center in Omaha, NE to see the pediatric ENT specialists there. 

 

The very next day we were in the office, meeting with the ENT who I had actually worked with in the past.  I never thought that I would be seeing her on the other side of things!  She scoped Hazel and said that she definitely had Laryngomalacia but that she was confident it was mild.  She also said that she had reflux and referred us to Occupational therapy to learn different ways to breastfeed so that she wouldn’t choke. 

 

Occupational therapy told us that she showed all the clinical signs of aspirating, so they had us thicken her breast milk with Gelmix.  So began my exclusively pumping journey.  We were thickening her bottles to nectar consistency.  The OT said that because she was so little and she showed such good clinical symptoms of aspirating it wasn’t necessary to perform a swallow study and expose her to all of the radiation. 

 

After a month and a half of the nectar thick milk and a few more follow ups with Hazel’s ENT things seemed to be looking up.  I noticed at night she still had a very loud stridor, and was still struggling with feedings.  Again, I took a voice recording of the sounds she was making and this time played them for her ENT.  That was on a Tuesday.  She was in for a sleep study two days later, and was diagnosed with obstructive sleep apnea.  We got the call with her diagnosis, and were told that she was scheduled for surgery the following day for a supraglottoplasty.  My husband and I were a mess.  We just kept thinking, “Her doctors told us they didn’t think she would need surgery!”

 

Her supra went very well.  We stayed overnight and were discharged the next morning.   We continued on nectar thick fluids and about a month and a half later I just didn’t feel like things were right.  I pushed for a swallow study, her first.  Even though the doctors and therapists said that clinically she was fine, right in front of my eyes she aspirated the nectar thick fluids we had been feeding her since 9 days old.  It was devastating!  She still penetrated with honey thick but could “tolerate it” so that’s what they put her on. 

 

Eventually we got sick of the word “clinically”.  Clinically she showed no signs of reflux, aspiration, apnea.  Nothing.  It was so terrifying to realize that this whole time she was battling these things and we, nor her doctors, and a clue.  

Hazel with her sister, June.

 

Hazel had another sleep study performed and was still having apnea’s during her R.E.M. cycles, and is still having audible swallows and troubles with her bottles.  On October 4^th she had a triple scope to see if she has a laryngeal cleft, and to take biopsies to see if something else could be causing her to aspirate. 

 

We are so thankful to have found this organization!  The network of families who are going through the same things as us is comforting.  It’s a place to turn to after a hard day.  We are able to talk about what is going on and actually have the person on the other end get it.  Hazel is such a happy baby and you would never know what she has been through if we didn’t talk about it.  We are hopeful that we can get some answers and thankful that she  will have no memories of everything.  Thank you so much Coping With Laryngomalacia!!! 

  

Written by: Lisa Cernik, Hazel's Mom
Photo credit: Lisa Cernik

To learn more about Coping With LM, Inc.'s Pint-Sized Powerhouse Grant Program please visit CopingWithLM.org

Pint-Sized Powerhouse Grant Recipient: Carter

When Carter was born, we immediately were concerned about his breathing. In the hospital, I asked about his "stuffy" sound. The staff kept telling us it was common after birth to sound stuffy because of all of the fluids and that "he was brand new". After a week or so, we went back to the doctor for our first check up. Again, I asked about his "stuffy" sound, and was told to use the bulb and saline- he was probably just contested. Carter slowly got louder and louder. I also noticed he began to seemingly "struggle" when breathing. The sound never went away- just got worst, he would gasp for air at times, and always sounded like he was snoring no matter what position he was in. Again, we went for his 1 month check up and that is when our pediatrician told us he had Laryngomalacia. At that time, the doctor did not refer us to an ENT and said it would clear up on its own as he grew and the cartilage hardened. I listened to the doctor, but something inside me didn't feel satisfied with that answer. This is when I started doing research and came across Coping With Laryngomalacia, Inc.

Mom & Carter

Once I started reading on the Coping with LM website, looked over the resources, and read the blog, I heard Carters symptoms over and over. I knew that my worry for my son was legitimate. I showed some of the resources to my husband who agreed something was "off" about the first opinion and tried to tell me to go get a second opinion. I didn't want to be overly worried, because after all, the doctor told me it was nothing to worry about. Later that same week, Carter stopped breathing while I was feeding him. My husband was sitting beside me and panicked as he heard him gasp for air when he finally started breathing! It was then that my husband insisted on a second opinion, and I will FOREVER be grateful for that! That second opinion could have saved our sweet boys life! 

We went to the second pediatrician, and she immediately called an ENT after hearing Carter and seeing how much he struggled. The pediatrician set up an appointment for us to see the ENT that same day, as well as put Carter on a breathing monitor after he had a few blue spells and stopped breathing momentarily. Once we arrived at the ENT, he did a scope and proceeded to tell us that Carters case was "one of the worst he has seen". That is not something you want to hear about your 1 month old baby's airway! The ENT wanted us to monitor his breathing and blue spells for 2 weeks, but expressed to us that surgery was most likely the outcome. 

Dad & Carter

During those next 2 weeks, Carters monitor went off numerous times- sometimes multiple times a day! Once we went back to the ENT he did another scope, showing Carters cartilage not only "floppy" but wrapped around itself. He was basically trying to breathe through a straw! He was scheduled for surgery that next week at exactly 2 months old! 

Our surgery was stressful, but SO successful! Carter is thriving and well a 4 months old! Our last ENT appointment was successful and our ENT was pleased with the progress he has made! This is the best news we could have heard after such a scary start to our LM journey!!! His stridor has gone down, and he retracts a lot less than before the surgery. Our ENT is watching the cartilage closely to make sure it stiffens on its own! It is our hope that Carter will be surgery free and be able to heal on his own!

Big Sister Sofia with Little Brother Carter

In honor of World Airway Defects Day, our 4 year old decided to show her love for her little brother by starting her first fundraiser. Big sister Sofia made light blue "confetti" bracelets for family and friends to wear to celebrate her little brother on World Airway Defect Day! I have to say, I truly underestimated my amazing little princess....she mailed out 78 bracelets and closed out her GoFundMe account at $660!!!! Not a bad first fundraiser for a 4 year old!! The profits were all given to Coping With LM, INC. Sofia's wanted to raise money to help babies like her brother with LM. She has the sweetest heart and I am so proud of all of the time, love, and care she put into her fundraiser. Sofia stuffed bracelets, personally signed every thank you card, and packaged each one herself (with Mommy's help of course).

Confetti Bracelets

The Acevedo family could not be more thankful for all that Coping with LM, INC has done for our family. We found out recently that Carter was chosen as a Pint Size Powerhouse Grant recipient. As the cost of surgery, ENT appointments, scopes, etc can get extremely costly- this took some of the burden off of our shoulders! We are so grateful for the help during this time! I constantly use the Coping with LM, INC Facebook page to ask questions and connect with other families going through this journey. This non-profit has changed our journey with LM and helped take some of the stress off with all of the fabulous resources available! I don't know what I would have done without this amazing support! The Acevedo's will forever love and support Coping with LM, INC and all that it stands for! Thank you for ALL that you do!

Written by:
Courtney Acevedo, Carter's Mom.

CWL Online Store: 20% Off Sale!

Use coupon code Summer20 for 20% off your entire retail purchase!

Offer is valid until 8/15/16 

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#SpreadTheLovey Project: Your Help Is Needed!

We are thrilled to announce we have partnered with Baby Jack & Co.'s ‪#‎spreadthelovey‬ Project!

Your donation of $18 per lovey will bring so much joy to a family, during a difficult time in their lives. Cost includes bulk shipping / delivery to donation. Don't worry about the shipping details, we will make sure it gets sent to your Kindness Rep!

Enter code KIND to offset the pre-set shipping on our website. No matter what shipping info you enter, it will be shipped to the donation recipient in 1 bulk shipment.

If you have interest in championing a donation drop off to a local hospital that is near and dear to you, please email Kelley at social@babyjackblankets.com for more details.

*lovies will be included in our Breathe Easy Care Package's.*
*Our goal is 100 lovies*

Airway Defects Day Highlight Video

I want to take a moment and thank everyone who participated in Paint Your Nails Light Blue For Laryngomalacia on World Airway Defects Day (July 10, 2016) this year. The support was overwhelming to say the least. From Turkey to Australia to New Jersey, USA- we all stood together-showing support, raising awareness and making a difference for an airway defect many can not pronounce. As I put together this highlight video, I reflected on my own journey with ‪#‎laryngomalacia‬. As many of you know, six years ago, my daughter-Seraphina- was diagnosed with life threatening laryngomalacia and needed an emergency supraglottoplasty. I remember sitting in the doctor's office and asking him if he had a support group-a contact-someone I could talk to. Someone who knew exactly what I was going through. He was unable to offer me anything. As I sat in PICU the night after Seraphina's surgery I made a promise to myself, I would do whatever I could so no parent has to sit in PICU, watching their child breathe and think, "I wish I had someone to talk to." Coping With Laryngomalacia, Inc. is here for you, you are not alone.
Thank you, from my bottom of my heart for going ‪#‎LightBlueForLM‬
- Stephanie Hueston, CWL Founder & President.
Want to help? Visit CopingWithLM.org