Friday, February 22, 2013

Living In the Moment

One of my 2013 New Years Resolutions was to organize all my pictures.  I had a box of memory cards full of pictures and videos that I hadn’t done anything with. Shortly after the New Year began I sat down to tackle the project I had been putting off since June of 2010. You see, I stopped caring about pictures after Seraphina had her surgery. Up until then, I had documented--Martha Stewart Style--everything. Danny and I dating, moving into our apartment, pregnancies, births, first baths. It was all organized neatly...in chronological  order... on display in our bedroom for anyone who wished to see. Then Laryngomalacia was thrown into the mix and suddenly there was no time for monthly photo shoots on Nana’s handmade blanket or ink footprints every three months in the baby book.

Time went on and pictures were taken... not like they were though... these pictures were proof life was hard. They are were... for  a lack of a better word, sad.

As I uploaded the pictures my stomach began to sink. I missed it, I thought. Life ran through my fingers and I was too overwhelmed to even notice. Seraphina’s first steps, Christmas, Lilli’s first dance class. All moments that I knew were but now vaguely remember. Two and half years of our lives are now missing puzzle pieces in our life photo album.

Before the upload was complete, I stopped. I couldn’t do it anymore and frankly, I didn’t want too. Looking at those pictures brought me right back to it all. To a place that I have tried so very hard to forget. And then it hit me. Laryngomalacia or not ...this is life. If you blink too long, dwell on the negative... cry instead of laugh... you will miss it.

I missed Seraphina being a baby and it hurts, a lot.  I hope someday she can understand why her baby book isn’t complete. Why her memory box is full of hospital bracelets. But most importantly... why I am so dedicated with living in the moment, now.

My children will not always mispronounce the word hungry (I’m hungee Mommy!). That playroom I dread cleaning every night will soon be a teenage boy's room with a “knock before you enter” sign hung directly in sight. That rocking chair I have spent sooo many hours in will be collecting dust in our attic. Those fabulous princess dress up shoes will be traded in for prom heels.

Before I know it, I will be sitting alone in this house looking at pictures from those monthly photo shoots on Nana’s blanket, first steps, trips to the zoo... smiling on how blessed I was. The pictures of Seraphina’s surgery will fall out of the box...oh here they are, I will say.... good really does follow the bad, now doesn’t it?

Breathe Easy,
Stephanie Hueston
CWL Founder & President

(c) Coping With Laryngomalacia, Inc. 2010-2013

Thursday, February 21, 2013

Itzbeen Pocket Nanny Giveaway!



Itzbeen Pocket Nanny is a baby care timer that has a host of helpful features for new parents. Some of these features include a nursing reminder, soft-glow nightlight and timer alarm.

Want one?
Enter the giveaway!

Requirements & rules:
  • Itzbeen Pocket Nanny must go to a baby with LM, TM and/or BM.
  • The baby must live within the USA.
  • The baby must be 3 months old or younger.
  • Submissions will be only accepted through this blog.
  • A winner will be randomly selected via Random.org
  • Giveaway is open from February 21 to March 1, 2013.
  • You may only enter once.
  • One entry per family. 
  • One Pocket Nanny will be given away, free of charge. 
  • Pocket Nanny will be either: blue, green or pink in color (based on availability).
How to enter:
  •  Comment to THIS POST with your name, email address, LM, TM/BM baby's name and age. 
  • "Like" & "Share" Itzbeen on Facebook from your personal Facebook account. Tell them Coping With LM sent you.
  •  If you are picked, we will Email you Friday night.
Good luck!

Wednesday, February 20, 2013

Questions to ask the ENT

Are you new to the Laryngomalacia world?
We have compiled a list of suggested questions to ask your ENT. 
Please feel free to print this and bring to your next appointment! 

  • How severe is the Laryngomalacia? Do you suspect Tracheomalacia or Bronchomalacia?

  • During the scope, was GERD (reflux) present? How severe? What is the treatment?

  • If surgery is needed, how many surgeries (supraglottoplasty) have you (the ENT) performed? Will you perform a Bronchoscope during surgery? What are your thoughts about second and third surgeries?
  • If surgery is not needed, how long is the watch and wait period? When do we “throw in the towel?”
  • What are sign/symptoms that I need to call 911?

  • Do you suggest any of the following tests? If no, why not?
Sleep Study
Barium Swallow
Chest/neck X-ray

  • What are signs/symptoms my baby is aspirating his/her food?

  • Are there any home remedies I can do to help improve the symptoms?

  • When do you believe my baby’s symptoms will improve?

  • How can I get in touch with you (the ENT) after office hours?

  • Are any specialist (pulmonologist, cardiologist, gastro) follow ups needed?

  • What hospital are you (the ENT) affiliated with?
  • What is your Emergency Appointment Policy? Can my baby be seen the same day I call?
  • Can you please forward your diagnosis and summary to my baby’s pediatrician? I would also like a copy of each for my own records.


© Coping With Laryngomalacia, Inc. 2010-2013

Tuesday, February 5, 2013

Eliza's Story


I hesitated to write this as it seemed self-indulgent and ‘woe is me’, plus in retrospect everything could have been a lot worse. I think hearing another family’s story would’ve helped me in those early weeks though and it has been a really cathartic exercise to write it all down, so here goes…

Excess fluid, a mistaken heart defect diagnosis at 20 weeks, living 10,000 miles from family and an absence of air conditioning in an Australian summer, combined to make my pregnancy with Eliza a tough one. But when she was born at 37 weeks by emergency c-section, we all fell in love with our raven-haired and red-lipped little girl, who brought a kind of symmetry to our family alongside her 4 year old brother.

During the first night in hospital I thought I heard her shivering so I added another blanket to the crib. It was a kind of faint panting noise. She was also bringing milk up through her nose and only sleeping for a few minutes at a time. The midwives dismissed it as mucous and we were discharged two days after she was born.

After a week of Eliza struggling to keep milk down and choking and thrashing about at every feed, I panicked when the area around her lips started turning blue. The GP was also concerned and sent us straight to A&E where they monitored her SATs and found them to be too low. Cue admittance to the children’s ward for a night and then a transfer to the children’s hospital where Eliza was put on tube feeds and saw doctors from every area of medicine known to man.

In retrospect I must have been operating on adrenaline – still sore and dosed-up on codeine from the c-section and severely sleep-deprived, I spent 10 nights on a fold-out bed in a noisy children’s ward, pumping milk every two hours, eating microwave soup and trying not to Google scary medical scenarios on my phone. Tim tried to squeeze in some hours at work between Luca’s Pre-school sessions and driving to and from the hospital. The ‘not knowing’ sent me into a kind of meltdown and I found myself pining for my Mum, who’d I’d lost to cancer a decade earlier and for the post baby moon that never was. I felt a long long way from anything familiar and safe.

As she’d passed all heart, lung and brain tests, the ENTs decided to take a better look under general anaesthetic. It took a lot longer for them to call us in to recovery than they’d originally said. While probing around, they had aggravated her larynx and she struggled to breathe when coming round, with SATs well below normal. My brand new baby was lying on a hospital bed with an oxygen mask, dosed up on steroids and I was completely helpless. I asked the stressed anaesthetist if prolonged low oxygen would mean brain damage and she said it was too early to tell – one of the worst moments of my life.

When everything (including me) had calmed down a bit, Eliza was taken to special care and the ENT Consultant showed us photos from the probe which just looked like a mass of pink jelly and declared it to be “good news” : a mild and common condition called Laryngomalacia (floppy larynx), combined with reflux. Tim asked the question I couldn’t get out of my mouth – could it kill her? The doc said no. (hers was a mild to moderate case). He explained that she’d grow out of it and we’d just have to learn to manage it with trial and error and daily omeprazole (a prescription anti-reflux drug).

We spent a few more days in the specialist newborn care ward while she was weaned off the tube feeds and back onto the breast, with the help of endless visits from lactation consultants and speech therapists (to help with suck-swallow coordination). A very upright position seemed to work best for her, although not for my back. My breasts had bigger audiences than the average glamour model and Eliza became famous as the biggest baby ever to be admitted to this ward of tiny little premmies.

Then we were sent home with an apnoea monitor and CPR training to carry on as normal and wait for her to grow out of this “mild and common condition”. Hmmmm….

What followed was a year of tears (many of them mine) vomit, screaming, thrashing, pacing and very little sleep. We went through dozens of muslins and varieties of cot wedges to keep her elevated. She practically lived in a baby carrier to keep her head higher than her stomach and we even spent a few thousand dollars on a Lazy Boy recliner (in easy-to-clean-milk-off leather) so I could sleep upright with her on my chest.

After a year of teetotal existence, I got drunk on her first birthday in both relief and celebration of surviving those 12 long months.

We now live back in the UK and Eliza is a beautiful 19-month-old Betty Boop lookalike, with a penchant for dancing, dogs and Daddy. She’s feisty though and has terrible and regular tantrums – I guess a year spent constantly regurgitating stomach acid will do that to a person. She doesn’t sleep particularly well and will often wake screaming, as if in a blind panic. She slept through her first full night at 15 months, on my 36th birthday. She took to solids brilliantly (she was baby-led weaned at 6 months - maybe the heavy solids minimised reflux?) but is quite behind in speech, which I hear is common in LM babies.

Anyway, that’s our story so far – hope it brings some comfort to other LM families or at least raises awareness of this little-known, unpronounceable and basically bloody nasty condition. Breathe easy x

Written by LM Supermom: Vicky