World turned upside down

November 17, 2014 – December 2, 2014

This is going to be the hard post….

I started a new job on November 17, 2014.  I had been laid off at my old job 2 months before Landrie was born.  I started my new job when Landrie was 3.5 months old and she started daycare at the same place my son was going.  After only a week in daycare, she got a minor cold which is nothing unusual with kids in daycare.  She had a little bit of a runny nose and cough but was happy, as usual.  My son and I also got a cold too.  My son had it bad….he had high fevers and really bad nose bleeds(an issue that he has quite a bit) all week.  Got very little sleep all week being up with him many times with the bloody noses that were hard to get to quit.  Was worried I was going to need to take him to the ER.  He finally started to improve as Thanksgiving approached.  We were all off on November 27^th and 28^th for Thanksgiving.  I so needed some time off to catch up on sleep after the week we had.  Had a great Thanksgiving and all seemed well besides some lingering cold symptoms for us all, but nothing major. 

On the 28^th(Black Friday), we just hung out around the house all day.  In the evening, we sat down to have a movie night and watch Wizard of Oz for the first time with our son.  Shortly after giving Landrie a bottle, I noticed the noisy breathing that she sometimes gets.  A few minutes later, the noisy breathing changed.  We had the lights out to watch the movie so I couldn’t see her well.  So I took her into another room to take a look at her.  She was struggling to breathe and was turning blue.  I could see panic on her face.  I yelled for my husband to call 911 because she was blue.  He did but got mad at the dispatcher because she kept asking for her name and since her name is unusual, I don’t think she was getting it.  At this point, Landrie stopped breathing in my arms.  There were many things running through my head at the same time.  I was trying to remember how to do CPR. I was worried about doing it wrong and hurting her. And I was thinking she was going to die in my arms.  My husband handed me his phone to talk to the dispatcher and he took her and started CPR.  She looked awful.  She was a horrible grey/blue color.  Formula came out of her nose and mouth as he did CPR.  It has been almost 2 years and I can still see her lying there like that like it was yesterday.  I have never been more scared in my life.  It felt like an eternity, but was only a couple of minutes when she started to breathe again.  10 minutes after the 911 call was placed, the police showed up and 10 minutes later the ambulance showed.  I grabbed a few things while the paramedics got her ready for transport and then I rode with her to the closest hospital.  They did not have the capabilities to handle a young baby.  So once they were sure she was stable, they transferred her by ambulance to our local children’s hospital.  My husband and son can to the first hospital for a little while but they went home to sleep when she was transferred to the other hospital since it was late.  My son witnessed everything that happened.  He was only 3 years old.  I know he didn’t understand everything that was going on but he knew enough…more than I would ever want him too. 

At the childrens hospital, they had an ENT check her out. He scoped her in her hospital room.  The scope was called a laryngoscopy. They shoved a tube with a camera down her nose while she was awake to look at her throat.  It was very hard to hold her down while they did this.  The ENT said that she had moderate – severe Laryngomalacia.

Laryngomalacia (LM) is when the tissues of the larynx (voice box) is soft or floppy.  This floppiness causes the tissue to block off the airway while breathing.  Which is what causes the high pitched noisy breathing, called stridor, on inhale that we had been hearing.  Most infants with LM, just have noisy breathing and grow out of it without any problems.  In a small percentage, kids struggle with breathing, blue spells, dying spells, eating and gaining weight.  In 1-5% of babies diagnosed... it is life threatening.  For these kids, a surgery, called Supraglottoplasty, may be needed. 

They had Landrie see the Feeding Team to assess if she was aspirating.  They were concerned about how she sounded while drinking her bottle so they decided to do a Barium Swallow Study to see if she was aspirating.  Unfortunately, it was a Saturday and they had to wait until Monday to do the study so she was not allowed to take anything by mouth until the study. So they put an NG tube in.  Another thing not fun to watch.  I think from the lack of sleep the week before, fighting a cold and the stress…I ended up getting pretty sick over the weekend.  Spent one day going back and forth either sweating or shivering.  And because I left in such a hurry, I did not pack any meds for myself.  So it was definitely a miserable few days. 

The Swallow Study was simple and non-invasive, thankfully.  Landrie just had to drink some barium at different thicknesses.  They would watch on a special xray to see where the liquid would go.  It was kind of neat to watch.  They noted some pooling but no aspiration on thin liquids.  The ENT recommended thickening her liquids to nectar thick as a precaution for aspiration because of how she sounded while drinking her bottles and to help with reflux symptoms.  The ENT also added Nexium to the Zantac to help the reflux.  He explained that reflux can really aggravate LM and that it was important to control the reflux.  Landrie was allowed to drink her bottles by mouth, which was good because the feisty girl ripped out her NG tube. They monitored her for a few days and her oxygen levels maintained well. So after 4 nights in the hospital, she was discharged on December 2^nd.  Our plan was to try to control her reflux better and wait and see how she did.  We were so excited and scared to go home.  While she was still admitted, I ordered a Snuza monitor.  It attaches to the diaper and will alarm if it doesn’t sense breathing by the belly movements.  There was no way I was going to sleep at all without something to monitor her.  We came very close to losing her.  A few hours later we would all have been in bed and may not of known she was in trouble. Thankfully, it happened when it did.  In an instant our world got turned upside down…..