Sunday, December 9, 2012

Looking Back: A Floppy Larynx 1st Birthday

 Seraphina celebrating her First Birthday at 16 months old.


The First Birthday. It's a big deal. Not only have you kept your baby alive, fed, diapered and clothed for an ENTIRE year..but you have somehow survived one year straight of not sleeping.
Who knew it was possible!?



Lilli's First Birthday planning started approximately the day she turned nine months. Or if we are being totally honest... I believe I started planning the day after her Happy Unbirthday Party... (what? yes.. I threw her a Happy Unbirthday Party the day she turned 6 months old. There was a cake --made by me with a huge 6 on it--, gifts and the people who adore her as much as I do were there...).
Her --real-- first birthday party was a HUGE backyard BBQ at my parents house--Pooh Bear theme. 70 guests,handmade bee's and even life sized, hand-painted Pooh characters lined the fence. The night before the party my sister and I filled about 100 plastic bear containers with honey and wrote "Happy 1st Birthday Lilli." on them... it was out of control to say the least.

I was already 13 weeks pregnant with Miss Seraphina but it was Lilli's day... she deserved a huge hoorah!

It was a great party... exhausting...but great.


So... Seraphina has been a year old for three months now...and the only thing we have done is ice cream cake and some pictures. I have not even taken her to Sear's for her First Year photo shoot. Her birthday dress hangs in her closet with the tags still on...the shoes she has already grown out of...but never worn. I am a horrible mother. I feel like I have cheated her. That I have let this mess of floppy larynx run  ruin our lives. It's not like I didn't try to plan a party. I did. Then I stopped because... being in and out of the hospital... Not knowing exactly what was going on... It was to much (for me...not her...).

I concentrated on caring for my baby and put the party hats away for another day.


My Plan B was to have a huge party after the sleep study results... because THOSE sleep study results were supposed to tell us what was wrong. Well...the sleep study has come and gone...the results have told us nothing more then we already knew...and my baby still has not had icing smeared across her perfect little face.


What am I waiting for? Why is this so hard?
I don't know. I think a part of me doesn't want to accept that my baby has been through what she has been through in her first year of life. If we have a party. If we have a photo shoot.It is all real. Instead of looking back and seeing all the milestones she has reached and mastered.
I will be reminded... reminded of something I try to forget...everyday.


Since the sleep study "results"...since Friday...Seraphina's last seizure. I realized something. Nothing is going to change this. I can wait for a million test results. I can never leave her side. I can not throw her a party. No matter what. She will STILL have a floppy larynx. She will STILL stop breathing. She probably STILL will have seizures.


And she will STILL be living.
She will STILL be my little girl...with her crazy red hair and a big tooth grin.


So instead of letting her first birthday remind me everything that has happened to her...it is going to remind of everything she has gotten through. Every smile she has made. Every ounce of strength this baby has. Every milestone reached. Every word spoken. Every perfect baby belly laugh. She.is.amazing. and it's about damn time I celebrate her...for being her...
I celebrate her and that floppy larynx!

Saturday, December 8, 2012

Issac's Story

Around 1 week old, Isaac started projectile vomiting, where he would lose his entire bottle.  Immediately, his pediatrician thought that he was aspirating, so we began thickening his formula (we have tried every thickener possible from Simply Thick, Thick It, GelMix, our own thickener made from Bob's Red Mill Xanthan Gum, Rice Cereal, Oatmeal-what works is a mixture of oatmeal and rice cereal).  From his irritability, she assumed that he had reflux as well.  The thickening seemed to help some.  At least when he would vomit, it would not hit the wall, instead, it was thick and just rolled out of his mouth and onto the floor.  
    I am a new mother (fairly young, 26), but I was still concerned with his labored breathing that we noticed at a very young age.  When I would tell my pediatrician this, she figured that it was the reflux settling in his nasal cavities.  I decided to record his breathing one night and promptly took it to our pediatrician.  When she heard his breathing, I will never forget what she said to me.  She said, "Megan, he stops breathing" as it were breaking news. I was thinking to myself, I told you so.  Now, our pediatrician is excellent and has been proactive with our little man.  I think she probably thought that I was an over-anxious, new mom...which I am (now).  We immediately saw an ENT.  He did the laryngoscopy and I was introduced to the term Laryngomalacia, which was a new one for me.  Our ENT said that it is something fairly common and that most children grow out of it and proceeded to tell me about the symptoms that are typical and the ones that are not so typical  As the weeks passed, we started to notice the more not so typical symptoms: apnea spells, rapid belly breathing, chest and neck retractions, extreme difficulty with eating, projectile vomiting.
   We also went and had a modified barium swallow study completed.  It did confirm that he aspirates, actually pretty badly.  We have to thicken his formula to a honey/ pudding texture, which means lots of oatmeal and extra calories.  So, when doctors would evaluate him, he was thriving as far as weight gain.  I continued to share my concern with his breathing and apnea spells and refusal to eat with our ENT, but he wasn't as concerned due to his weight gain.  While meeting with our pediatrician, he had a spell where he couldn't catch his breath and then vomited a lot of mucus.  At that point, she told me that surgery was necessary.  This meant a lot coming from a doctor that takes the holistic approach when possible.
    Before his surgery, they wanted to confirm that he did not have pyloric stenosis or malrotation.  We had a full upper GI completed.  They were able to eliminate the two problems that would require immediate surgery, but they did confirm that he has extreme reflux (if the spare change of clothes in our diaper bag didn't give it away first).  They also found that his stomach does not empty correctly (Delayed Gastric Emptying), which may require surgery.  We are monitoring this for now.  
    Finding out all of this has been tough to swallow (no pun intended), because everything just seemed to build upon one another.  He also has torticollis, which we have been going to physical therapy once a week in the beginning and now one every two weeks.  
    So, Isaac went into surgery on November 15, 2012.  This was a scary thing for me, due to the fact that he was completely sedated and required a breathing tube.  I had read about this and knew what to expect, but it was still a little scary for me.  The surgery went well.  They clipped the extra/ floppy tissue, but they also had to repair his epiglottis while in there.  The doctor also found that his bronchial opening is smaller than normal, which may require stretching.  I feel like we get a lot of "this may happen" or "this will probably happen in the future" in regards to some of his other complications.  As I said, surgery went well.  Spending the two days in the hospital with an IV and a baby that refuses to eat was not so great.  He required quite a bit of morphine for pain.  He wasn't recovering as quickly as expected, so he was given a strong dose of antibiotics and two doses of steroids to help with inflammation.  We were discharged from the hospital, home for three hours, and then back in the ER.  Isaac got choked, couldn't catch his breath and required somewhat of a Heimlich maneuver to clear his airway.
   After that little episode, the breathing seems to be much better.  They just believed that he hadn't cleared all the "junk" out from surgery.  He is able to sleep on his own (in his Nap Nanny).  Previously, I or my husband would have to hold him upright most nights due to the choking and apnea spells.  Although it meant little sleep, it was comforting to us due to the fact that his breathing was so labored.  We did have some nights where he was able to sleep in his Nap Nanny on his own.  We got to the point where we could say to one another..."tonight is going to be one of those nights".  One reason why I say that I wished I had found out about the CWL sooner (other than the tremendous support) is the fact that it was by trial and error that we found that a Nap Nanny would help.  We realized that he did much better in his car seat, but we weren't comfortable with him sleeping in it.
   So where we are now, is dealing with his eating aversion and taking amoxicillin for an ear infection, which I have found on the CWL site is common for LM babies. Isaac should be consuming around 30 ounces of formula per day, but we are lucky if we can get him to drink 16-20 ounces.  This is a hydration and nutrition concern.  We went back for another swallow study today.  He continues to aspirate basically the same.  Not that it was a fun experience, but fortunately they were able to see his refusal to eat.  We have tried every bottle possible with a nipple that allows thicker flow, sippy cups, cup feeding, and spoon feeding.  For a successful feed, we have to feed him right when he wakes up from sleeping or a nap or when he is falling asleep.  This means little time going out and having to master plan the day.  We have tried all types and brands of formula as well.  We are currently using Enfamil Gentlease or Gerber Gentle.  We were referred to see a nutritionist, so we will add that to his list of specialists and our list of bills.  Financially, this has been difficult due to the fact of the multiple specialist copays, surgeries, studies, pediatrician appointments, etc.  I am a school teacher and have not been able to go back to work due to all of his struggles, but his health is a priority right now.
 
Written by LM Supermama: Megan

Thursday, November 29, 2012

Karen & Liam's Story



Liam, my youngest and only LM baby, was born at 36 ½ - 37 weeks due to my pregnancy induced hypertension. He was born not breathing well and was diagnosed with respiratory distress syndrome (left lung was under developed). He ended up spending 9 days in the NICU. When we took him home, he had a stridor that we were told he would loose in a few days. Liam’s first pediatrician told me that he had Tracheomalcia and would grow out of it. Each week we were back in her office, sometimes twice or three times a week with me complaining and pleading with her that he could not breathe. I tried breastfeeding from the start and always had to supplement with formula. My milk never really did produce enough. They said the stress of the NICU probably hurt me, but I was on two different supplements and a prescription trying to get my milk supply up. Liam had trouble feeding from the start. He would just get so tired and once he went to sleep, there was no rousing him to finish. Sometimes we would take a ½ of an ounce and pass out. The pediatrician did diagnose him with GERD, so we switch formulas (due to allergy/intolerance) and put him on Zantac. That is when I quit breastfeeding and he went to formula 100%. I even went as far as to call up a pulmonologists’ office, on my own one day, asking if I needed a referral (was told yes). When I called for the referral from the pediatrician, I was told that he was not “bad enough” to see one. However, after the failed Zantac, my husband called and demanded a referral to a GI doctor, which was given quickly.
At about 12 weeks old, he met the GI doctor who heard him take a bottle and see how hard it was for him and promptly asked who our pulmonologist was. I had to laugh. When I explained the situation, he told me that he would take care of it for me and made Liam an appt with one and ordered a swallow study and barium swallow. (BTW: we have NEVER been back to that first pediatrician) The results of the swallow study and barium swallow showed he had problems with the suck/swallow motion, but no aspirations and referred us to an ENT. The pulmonologist said that everything looked good from their perspective and that his lung that was under developed at birth was 100% perfect now. Yay! J
Two weeks later, we met the ENT. As long as I live I will NEVER forget that appt. My mother went with me. My husband was always unable to accompany us to the appts due to school, and this was the first time I was not alone. Vanderbilt Children’s Hospital is a teaching hospital so before actually see and meeting the ENT, we met a couple of nurses, a PA, and a couple of medical students. After watching Liam’s barium swallow video, we met. Little did I know that this man would become my best friend and lifesaver (LITERALLY!!) Dr. Wootten did an in the office scope and showed us the extra tissue above my baby’s larynx. He told me that he had Laryngomalacia (not Tracheomalcia “which can be confusing to the untrained ear,” he said) and told me that he needed surgery due to his failure to thrive. When I left that appt, my head was spinning. FINALLY I knew what was wrong with my child and someone was going to help me make him better. After 14 weeks of watching my child struggling to eat and breathe….I knew how to help him. At 16 weeks he had surgery. Went great! However, when placing his breathing tube in during surgery, he was found to have Congenital Subglottic Stenosis. This is narrowing BELOW the larynx. Congenital because he had never had a breathing tube while in the NICU. Most babies get it from prolonged use of the breathing tube and scar tissue is formed. We were told that he was a grade 2 (about 50% narrowed) and could possibly have another surgery – this time a MAJOR one requiring a graft to be put in and months in the hospital. However, he had a great night in the PICU and was allowed to leave the next morning.
A couple of weeks later, Liam had his first appt with his new pediatrician who was concerned about our breathing issue questions (he was having blue spells around the mouth) and sent us to the emergency room. There his ENT met us and we found out he had his first cause of croup. Very mild. Croup is something we were told to watch out for with Liam. Due to the narrowing of around his larynx, once it is inflamed and swollen, problems can arise very quickly. We were told that if he gets it a lot, surgery (the BIG one) would be inventible. At this point we were seeing the ENT ever two weeks. Liam was better than before, but not better enough to say that he was doing good. Still had the stridor, although not 100% of the time like before, and was still having blue episodes around his mouth.
At 22 weeks, Liam had a bronchoscopy along with some cultures from the GI and pulmonologist taken and also had a ph probe wire inserted into his esophagus to measure the ph levels and reflux. Due to the many tests, we had to (unexpectedly) stay over night at the hospital. The ph probe was very crappy. I had to track every time he ate and was position he was in, if he got the hiccups or coughed….they finally came the next afternoon and took it out. The ENT knew we were about to go out of town, in fact 2 days after leaving the hospital we were scheduled to go on a plane to Maryland and see my husband’s family and introduce Liam to everyone. The ENT said that it would be fine, but when we came back, he would take out Liam’s adenoids because they were already too large. So, next week when we returned, went back to the hospital for surgery/procedure # 3. This time we ended up staying 2 nights at the hospital. He refused to eat.
Since then things have slowed down and have gotten to be somewhat normal. At 8 months, Liam was placed on an apnea monitor at bedtime to see if he was having any episodes…he is. So a sleep study was scheduled at took place at 11 months. As it turns out Liam has Central Sleep Apnea with oxygen levels dropping as low as 69% while in REM sleep and 89% in NREM. We are currently waiting to see if he will be put on oxygen overnight. An appt with a sleep neurologist is scheduled for next month.
As far as the GERD, that is a HUGE headache! He has been on Zantac, Nexium packets, and compounded Prilosec. He has been on the compounded Prilosec and Zantac daily for a while now with many increases. If we even miss one dose, Liam pays for it for a couple of days. I am very afraid that they might be considering the Nissen surgery.
Liam is 12 months now. He started crawling at 10 ½ months and just recently pulling up. He has switched to milk very well (I think he likes it better than formula!) He is also starting to talk and say a few words.
Even with two surgeries looming over our heads, we are still pretty optimistic. We hardly hear the stridor anymore. Only when he is crying hard or crying while tired. He still has some trouble with chunky foods at times and gets choked easily.
I know we all struggle at times in our lives – it is a part of life they say….but I still hate it that my sweet baby Liam had to start out in this world struggling. Struggling to breathe, struggling to eat, struggling to develop and grow. But hopefully, it can only get better from here. 

Written by: LM Supermama Karen 

Saturday, November 24, 2012

Gabe's Story

Gabe has nearly reached his first birthday.  Oh what a journey we have been on!
Heading into parenting a fourth baby; It didn’t occur to me to worry about things like diapering, eating or breathing.  Gabe’s hip dysplasia meant that my stomach turned at any tug of his leg, and we learned a new way to diaper that kept his leg and his body attached….

Breathing?  Well, I guess I always took that for granted.  Eating too.  But my baby Gabe struggled to eat and I found myself saying aloud on a regular basis… “is he breathing?”  His choking sounds during eating, between eating, and especially those that pierced the silence of the overnights, stopped my heart.  We thought it was reflux… we thought it was because of the swallowing problems… we didn’t know yet that his airway was collapsing... but we knew something was terribly wrong.

I would come to know both the agony and the relief in hearing a diagnosis.  “Surprisingly severe” laryngomalacia.  They booked the OR for the very next morning, and before we had time to catch our breath, the doctors were tackling the problem.  I looked at his little body in that PICU crib, attached to cords and tubes from head to toe… and felt a heartache like no other.  He struggled, and he was in pain, and I felt helpless.  Once again desperate.. once again numb, yet overwhelmed with emotion all at once.

That PICU stay would not be our last… there have been countless others since.  He has endured and overcome more surgery and  more illness.  I have held his body and begged to God for him to just breathe as I watched the pulse ox monitors flash.  I have watched the red lights just outside his PICU room flash and alarm.  I have held him between my legs on ambulance gurnies, being lifted into lifeflight planes with an oxygen mask over his face….  Hearing the roar of the plane and nothing at all in exactly the same moment.  I have recited his medical history to countless ER, Reg floor and PICU doctors, and to a long list of specialists… hundreds of times this year.  Slept on chairs and washed up with his wet wipes in the bathroom of his hospital room.  I have glanced inside the other PICU rooms as I walk about and caught glimpses of the other sick babies and kids taking up residence there…. Tubes, vents, cords… I have seen the parent’s faces and learned that the PICU is a complicated place.  Within those walls there is love, worry, grief, excitement, frustration, patience and impatience, joy, concern, fear, admiration, hurt and healing. 
I have never kept a pulse ox, meds, and for me a toothbrush, deodorant and an extra pair of underwear in my other kids diaper bags…. But he isn’t other kids… his journey is special… it is miraculous… it is full of twists and turns, crisis and success.  Looking back.. there has been more good than bad… and there has been good in the bad.
Gabe has earned my respect and admiration this year.  And now we are just one month from his first birthday….  It has been a shining beacon awaiting us throughout this journey.  I will never forget sitting in the PT waiting room visiting with his speech path.  We were talking about the mom’s and the babies from years past, before modern medicine… With a flip of her hand towards him she said “Like him…without his surgery and swallowing help… he’d be dead before his first birthday.”

I had to work really hard on keeping my exposure.  Her words cut through me like a knife.  She was right… I have heard countless stories of babies from the early 1900s who had died because they “could never eat right”  “were never very strong”  “got lots of pneumonias”  “Had breathing problems” etc…  They were like him….. he was like them…… their mom’s had to watch them slip away and bury them…. They had to lose their lives…. Yet somehow we were fortunate enough to live in not only this era… but in this part of the world… and my child had access to what he needed through this journey to be able to go on and live to see his first birthday…… 

For those with the typical Laryngomalacia, one year is often the turning point of “growing out of it.”  So, for Gabe, he needed the surgery, but he has also needed to grow and build those floppy muscles into strong, lean, breathing and eating machines.  We are now in the final lap of the “one year marathon”  Perhaps after one year the cycle of respiratory distress, hospitalizations and steroids will wind down and even stop?  One can only hope.  It has been said that the promise of “one year” is a fallacy.  I don’t know what the future holds, but I am a mom who is hopeful for my child.

Maybe one year will be the mark where he is actually willing to look at the food I present to him without gagging, and swallow it without throwing up…. We will continue with feeding therapy and keep him a big strong boy, whatever that takes.  My heart hurts when he struggles.

All of the above will matter on the day we bake a cake and gather to celebrate Gabe being 1 year old… but what will really matter most… is that he is alive.  This strong, resilient, loving, smiley, happy boy who never complains, adores his family, enjoys the attention of nurses, doesn’t fuss, and who has taught me much about love, life, parenting, and faith… is alive…. And I couldn’t be more grateful. 


Written by: Gabe's mom, LM Supermama

Tuesday, November 13, 2012

A Bigger Plan: Jordy's Story

   From the time I found out I was pregnant something felt off.  I can remember telling Daneal so many times through my pregnancy that I felt like something wasn’t right.  It was a long pregnancy with one problem after another.  My heart kept telling me something bad was coming.  It’s the hardest feeling to describe but it was there in my gut every single day.  After 37 weeks my labor came hard and fast.  Then there she was.  She looked perfect, beautiful, and just like her sisters!  For a split second I had a sigh of relief.  She was a perfect healthy baby girl.  Then the dominos began to fall……. 
            They had trouble getting her to take her first breath and her oxygen levels were low.  They assured me this was normal with babies born at 37 weeks and Jordy would be fine by the next day.  The next day came and she was off of the oxygen and now another sigh of relief.  Ahhh, now I have my healthy baby girl.  She did breathe a little loud but again that was normal for a baby born at 37 weeks and that was probably just mucus.  It would go away in a couple weeks.  Our first night at home was the beginning of the fight of my life.  That’s the night she stopped breathing in my arms for the first time and I saw my whole world crashing around me.
            I have experienced more emotions in the past 11 months than I have every felt in my whole life.  It has been rage, anger, fear, heartbreak, betrayal, joy, and questioning my faith all bundled up into one.  There’s not one word that that can explain what my heart goes through when I look at Jordy.
The RAGE is me trying to figure out why God would do this to such an innocent baby.  How could he let her struggle with every breath?  Sometimes I lay awake watching her trying to imagine what it would be like living everyday not taking a deep breath of air, to feel as if I was suffocating with every breath I took. 
ANGER hits me when people tell me that she looks like she doing so much better.  Really?  Seriously?  Would you like to come with me when she gets her next scope done and then let me know how she looks?  Listen to her scream while I watch her airways collapse before my eyes on a monitor.  Better yet, maybe I should call you at 3am when she wakes up gasping for air and choking.  Maybe you might think different if you watched the tears stream down her cheeks but no sound coming out because she’s choking on her own saliva as I watch helpless thinking “breathe baby breathe”.  Wondering if this will be the time I have to start CPR.  Then let me know how “fine” she is or “how much better she is doing”. 
FEAR is the unknown.  The feeling like no one understands what our family is going through daily.  The fear of how this stress is going to affect my family.  The constant “what if” thought that runs through my head.  The fear that she may not start breathing again someday. 
HEARTBREAK is my heart breaking into a million pieces every day.  When I can see the fear and love in Jordy’s eyes all within the same second as she’s fighting for that next breath on a rough day.  The heartbreak of how hopeless it feels as a Mother that my kiss is not enough to make her all better. 
BETRAYAL is for all of the false hope I was given by so many of the doctors in the beginning.  LM was supposed to be gone by the time she was 9 months!!!  We were supposed to outgrow this!  FU LM! 
 
And then the JOY came!  After 11 months I still feel every single one of these emotions every single day but I wouldn’t trade a single one of these for what comes with them, the JOY of saying “I am Jordy’s MOMMA!”  God knew we needed each other and he has big plans for us.  He knew that my heart was full of enough patience and love to be the perfect Mommy for her.  He knew I was a fighter and would fight for her and would never give up on her.  He also knew that I needed her to teach me so many lessons that I had not yet been taught.  I took life and everything in it for granted.  I needed to slow down and see how beautiful my surrounds truly are.  I’ve learned how precious every moment bad or good is.  I’ve lost some people that I at one time thought were important to me but, I also have a few relationships that have grown stronger than ever through all of this.  I’ve gained a new family out of complete strangers who know exactly how I’m feeling.  These amazing women have put a whole new meaning in two simple words for my family.  BREATHE EASY.  For these ladies I am thankful!
It’s taken me 11 months to finally be able to put my feelings down on paper.  Actually, I think it’s taken me 11 months to finally get my feelings sorted out.  I know our journey is far from over and this I have come to accept.  This is our life and someday it will all become part of a bigger plan.  

Written by : LM Supermama  Stormye

Wednesday, November 7, 2012

His Story. My Story. Our Story

My husband and I have 3 little boys. It took a year and a half to conceive our third baby. I had a rough pregnancy with Cruz. I was sick all the time, more than I was with my other two. I was exhausted. My family and I had just moved to Alabama where we knew NO ONE... I had no one to give me a break.. I am a stay at home mom, but everyone needs a break from time to time, ya know? Not for me. My husband and I both come from small broken families, so although its hard not having anyone around, its a lot harder to live down the road from family, and still not have any help, or involvement. My husband works all the time, and had a job offer, So here we are in Alabama. Cruz was born at 39 weeks repeat cesarean. He was 7 pounds 15 ounces. My third beautiful baby boy was born. He was born jaundice and placed under the lights at the hospital. He was born "squeaking".. I was absolutely nursing him. I nursed my firstborn for 22 months and my second for 6 months.. yes I was one of "those" moms. a VERY proud semi-arrogant nursing mother. After all I had donated milk to premature babies in the past. I would NEVER give MY newborn baby formula. On day six of Cruz's life he was admitted for a jaundice level of 18, which is a considerably high number. Again, he was placed under the "lights"... But hey, my other two were jaundice. I had almost expected him to be jaundice, what I didn't expect was him to be gasping for air.. I didn't expect him to be sounding like he had mucus blocking his airway. I didn't expect him to be squeaking. I didn't expect him to be SCREAMING crying all the time. I didn't expect to have a difficult time nursing...why was MY milk drying up? why couldn't he latch on? why was he holding his breath? What was going on? He was my third, shouldn't this be easy? Shouldn't he be the happiest easiest baby of all three of mine? I always thought your third was the easiest.. why was this so hard?? Why am I failing? What am I doing wrong? Is there something wrong with him? How could this happen? All these questions were running through my head CONSTANTLY. At 3 weeks old my milk had dried up completely, he wasn't able to breath, suck, and swallow. I blamed myself, I just figured, I was older, not eating healthy enough, and worn out. I switched to formula. I had NO engorgement. Nothing. It was gone. ALL gone. I felt guilty, I still do. I feel like I had failed him. At this point he was crying so often that I couldn't even think straight. I couldn't even gather my thoughts. EVERY waking moment my baby was SCREAMING. If he was awake, he was crying. At 6 weeks old Cruz was considered "colic"...and recommended to start a "special" formula. He was referred to an ENT specialist for his mucusy sounding stridor.. Little did I know I was about to meet the man that would essentially save my babies life, and ENT specialist in Huntsville, Alabama. The very first appointment Cruz was scoped (a tube the size of a spaghetti strand is was put up his nose and down his throat..not pleasant..something that has now been done to him so many times I have lost count) and Dx with severe Laryngomalacia... Laryngomalacia ,is fairly common, most babies will "outgrow" it and only about 1-5 percent require surgery.. Surely my baby will outgrow it. He also put on Zantac for his severe GERD.. Plan was to see him back in 6 weeks. Cruz was approaching 12 weeks. STILL crying ALL the time, gasping for air, coughing, choking, retracting so badly you could see almost EVERY rib in his chest, the weekend before surgery, he was even retracting in his neck! He wasn't gaining weight, like he should have been, turns out he was burning so many calories, TRYING to simply breath.. Can you imagine someone saying to you "It could be worse" or "other than "that" he's ok?  ... ... I am quite certain you wouldn't feel like "it could be worse" if your baby couldn't breath! How on earth could it possibly be worse, if you can't breath?! Other than "THAT" he's ok?  Other than "what"? not being able to breath??... sure he's fine!?!   A simple exercise to display how Cruz was breathing would be for a person to run until they are completely OUT of breath (you know the feeling) and living like that day and night for 12 weeks! MY baby, MY perfect baby, something was seriously wrong. We went back to the ENT specialist. He scoped him and told me surgery was necessary. I, in a way, blew him off. Not MY baby. NO WAY! He continued to tell me, that if Cruz were to catch something as simple as a common cold, it would probably "close him right up"....shaking my head, holding back tears, lump in my throat,...I questioned.. like "close him right up, blue in the face, calling 911 closed up?, I responded?!? yes..he said..putting him at risk for an emergency tracheotomy...assuming he even makes it to the hospital. Death had never felt so close.    I almost fell apart right there. I was in complete shock. surgery?!? My baby is ONLY 12 weeks. Hes a NEWBORN! surgery?! I left and IMMEDIATELY called his pediatrician and went directly over to her office. There was NO way she would think he needed surgery! No way! To my disbelief this woman whom I respect greatly looked me in my eyes, and said she has been working along side the ENT specialist for 16 years, and he has ONLY recommended 2 of her patients to have this surgery. She continued to tell me he was very conservative about surgery, and very selective. I was shocked. Cold Still. Pale. Speechless. Shocked. I went home and googled everything.. I couldn't really find anything. VERY VERY little. I came across Coping with Laryngomalacia. Turns out there are women who can't get doctors to look twice at their floppy larynx baby, desperate for their babies to get scoped, desperate for a doctor to give them answers, desperate to see an ENT.. My doctors WERE giving me the answers, I just couldn't believe them. The day that changed everything. Surgery it was. Cruz had his surgery Nov. 7, 2011, at the very tender age of 12 weeks. He had a bronoscopy and supraglottoplasty. I gave my baby over into the hands of medical professionals, praying that they would bring him back to me, praying to God, to take care of my newborn baby. He was in surgery for about an hour and a half. I sat in the waiting room ALONE. My husband stayed at home with our other boys. There have been plenty of times in my life where I have stood only to relieze there was no one around, but this time was different, I looked around only to realize  I was standing there alone, in a very desperate time of need. That was the longest hour and a half of my life. I was numb. There were no emotions to be felt. This was serious. I had to be strong. There wasn't a choice. My baby was being put under, and having surgery and I Had to be ok with it. It doesn't take much for me to relive those moments. I will never forget how helpless I felt. I walked into recovery, he was very pale, screaming bloody murder, cold, and clearly in pain. I was clueless. There was nothing I could do to help him. There was nothing I could do to comfort him. I was a terrible mother. How could I have put him thru this? I have never been more on my knees about anything in my life. PLEADING.He was transferred to PICU and stayed there for 35 hours. He was given MORPHINE 3 times for pain, steroids, laratab. zantac, tylenol, and numerous breathing treatments. He had all different kinds of tubes and cords attached to him. He was in a hospital gown. There is NOTHING worse than seeing your newborn baby in PAIN. There is NOTHING more STILL and COLD and SCARY than the pediatric intensive care unit. You will NEVER know FEAR until you hear monitors going off because your babies oxygen level is dropping to a dangerous level.The 2 weeks that followed Cruz's surgery are a blur. The medication he was sent home with was stressful in itself, it was more than my other 2 children had taken in their entire life's COMBINED. He slept VERY little in those 2 weeks, falling asleep for 15-30 minutes at a time and waking up screaming 24 hours a day.. Recovery was long for Cruz. The first two weeks were the worst of course, but it took about a total of a month and a half for him to really start acting like a "normal" baby. I cried, he cried, we cried... A LOT.. I tried to do most of my crying alone while I showered or whatever. I didn't want my boys to see me falling apart. I didn't want my husband family or friends to know how much of an emotional toll this was taking, NOT that there were a lot of people concerned of my babies well being,as matter of fact there is only a SMALL handful of people that even asked how he was doing, and for those few people I will be FOREVER grateful, your continued support means more than I can express in words, and I will never be able to thank you enough. There were many friends and family who showed us no concern at all, it was a defining moment in a lot of my relationships.  
It was a VICIOUS CRUEL cycle.. Cruz would scream because he was considered colic, in turn with all the crying his larynx would swell, the swelling would cause breathing problems, therefore causing him more frustration because he wouldn't be able to breath and the cycle would start again. OVER AND OVER AGAIN. Do you know how HARD it is to try to soothe a baby with colic that also has an obstructed airway?! I was mostly angry. Angry that, not only did God NOT give me a family or friends to help me, he also gave me a baby that required special attention, and a husband that was in denial. I still cry when I think about everything that has happened in these short six months. I'm not angry anymore, and Cruz is doing a lot better. He can breath now. He's not in need for oxygen anymore. Can you imagine something so simply as breathing, struggling for 12 weeks? What a fighter, what a strong little man he is. I now realize that God chose me to be his mother because he knew I could. God knew I was strong enough. God knew I was patient enough. I am humbled that God thought I was his perfect fit. Gave gave me a special baby, because I am a special mother. Cruz will be ok. I am determined that he will be a happy child. He is changed forever. I am changed forever.  This is our journey with laryngomalacia.
Ellen Garner--
I am so happy Cruz is doing so well and that I am almost to a place of reflection on everything that has happened. Please continue to pray for his continued healing, and give praise and glory to his name for Cruz's defeat!!  Cruz most recently had his adenoids removed and tubes placed in his his ears, and we are very hopeful that we are at a turning point. 

Written by: Ellen Garner, LM Supermama 

Friday, October 5, 2012

Thank You.

I often find myself unable to comprehend the true impact CWL has made in this world.
When I receive Emails, thank you cards, photos... thanking CWL  for what we have done, for bringing families from all over the world together... so they can all cope, together. For the programs we offer. For the friendships made. I can not feel anything but humbled... that I am part in such an amazing journey. 

It was the night after Seraphina's surgery... I was sitting in the dark ICU room, watching her breathe. Watching the monitors.. wondering how on Earth did we get here? I was 23 years old, mother of 2 under 2... and one of my babies had a life threatening defect. The pill was hard to swallow. 
I made a promise to myself that night... that I would not let what I was given destroy me...for I was given it for a reason.   At that moment I didn't know how I would do it, I just knew I WAS going to do it. A month later I started the Coping With Laryngomalacia blog. It was my outlet. All those suppressed feelings of anger, fear, frustration came flowing out like an unstoppable river. By letting all the pain out... I began to feel something I hadn't felt in a very long time... strength.

And so the journey began...

Here we are, the first 501 (c) 3 nonprofit organization dedicated to families coping with LM, TM and BM.Over 25 volunteers that have taken time out of their busy lives to: organize fundraisers/events, photograph our events, host CPR classes, answer Emails, pick up donations such as blankets & formula, meet with LM, TM/BM families, keep an ongoing, up-to-date calender of all our pint-size powerhouses appointments (I still don't know how Stephanie does it!), the list goes on and on! 
We have helped over 125 babies since the first handmade blanket was mailed out in  October of 2010. 
We have an amazing group of on-going donors such as Blankie Depot, Hookin It Forward, Nap Nanny, Rambling Photography, Leonardo First Aid House, Socks 4 Surgery and many local mothers who donate formula.

CWL has been life changing to say the least. I have met some amazing, strong, powerful, beautiful people whose positive outlook is nothing less than inspiring.

So thank you... to everyone and anyone who has made this journey possible. Thank you for supporting my belief that anyone can really change the world. <3

Breathe Easy,
Stephanie Hueston
CWL Founder & President 
CopingWithLM@yahoo.com

Friday, September 21, 2012

A note from our Feeding Support Specialist

One complication that many doctors do not tell you about that can be associated with LM is feeding difficulties. When the baby begins feeding they can have difficulty coordinating the suck, swallow, breath reflex and can choke because the formula or breast milk enters the airway. The liquids can penetrate the airway or even be aspirated in to the lungs, which can cause frequent respiratory infections. The child can also have difficulty staying awake during feeds because they are working so hard to breathe and drink that they exhaust themselves. If the little one struggles with this for an extended period of time they can sometimes develop aversions (refusal to drink) or even dysphasia (difficulty swallowing). These aversions can become amplified if the child also suffers from reflux because they find it painful to eat. When the LM little one does not eat enough they may struggle to gain weight or maintain a healthy weight and be diagnosed failure to thrive. If this is the case some of these children need intervention such as feeding therapy, weight checks, and worse case scenario a feeding tube, NG or Gtube (NG=tube through nose into stomach, Gtube tube directly into stomach form external belly). The purpose of the feeding tube is to supplement what the child is unable to take orally to maintain a healthy weight. If you find that your baby is struggling with feeding let your doctor know, they will be able to closely monitor and see what the best strategy is to help. A few tests that can be done to dx feeding difficulty is a modified barium swallow, this test will show if your child has difficulty swallowing and what types of liquids they have trouble with (thin, nectar consistency, or honey consistency) and if they child aspirates or penetrates on these consistencies. Another test that is often used to dx reflux is an upper GI series where the barium is followed into the stomach and they watch to see how often and how far up the barium comes back up into the esophagus. If there is evidence of reflux you can also ask your dr to have a PH probe test done where the monitor the acid level and also how far and often the reflux comes up into the esophagus. This test will show weather or not the reflux medications that your child is on are working to lower the acid levels of their stomach acid. LM is scary in itself but throw feeding difficulties into the equation and it can be nerve wrecking and exhausting. 

Do you have a LM, TM/BM baby who is having difficulty feeding and need support?
Please contact our   Executive Assistant and Feeding Support Specialist, 
Christine Amaro, ChrissyGates2@aol.com

Disclaimer: CWL does not medical treat, diagnose or care for any individual associated with the organization.

Wednesday, August 15, 2012

The LM Fairy is M.I.A!


Seraphina was five weeks old and the ENT had just pulled the scope out of her nose.
She was gasping for air and there was blood dripping from her nose.
I sat there, numb.
The ENT said,
"your baby has something called laryngomalacia. It will be gone by her first birthday."
and walked out the door...

Ohh... okay... that's good...that's not that bad.
I pictured the Floppy Larynx Fairy magically slipping into
Seraphina's bedroom the night before her first birthday.
The fairy shook her wand over Seraphina's floppy larynx and viola!
No more floppy larynx!Thank you Floppy Larynx Fairy! You are the best!
I gave her a hi-5 and then we went shopping and saw Hangover 2 together.
she treated!

I left the ENT's office with a huge false sense of
"this is going to be okay...the Floppy Larynx Fairy will take care of it."

Every night I waited... I waited for her... to make Seraphina all better.
16 months later... I am still waiting.

I am starting to think the Floppy Larynx Fairy does not know where we live.
She should talk to the First Aid Squad and Paramedics because they know where we live.
Or even the medical supply company they know!
I am sure they could even give her a lift if she needed it.

Or maybe she is on vacation...a very long vacation....
she doesn't have good cell phone reception and that's why
she has not replied to my 107265383 text messages.
That's okay... I'll hit her up on Facebook.

Newsflash to all the ENT's!
there is no such thing as the Floppy Larynx Fairy
so stop tricking all of the LM Supermom's into believing there is!
because they are getting pretty p*ssed.

Thursday, August 9, 2012

Looking Back: Can You See My Floppy Larynx?

 

Can you see my floppy larynx from here?

Seraphina at 9 months old... showing off her floppy larynx.