Wednesday, October 5, 2016

Pint-Sized Powerhouse Grant Recipient : Hazel

Let me start off by introducing my daughter, Hazel.  She just turned 8 months old on October 3rd. 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 4th 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