Winter months

December 2014 - March 2015

Landrie recovered well from her Supraglottoplasty.  We enjoyed Christmas and New Year’s.  She had several upper respiratory illnesses (URI) that were quite rough on her.  We frequented the children’s ER.  Definitely took me a while to figure out what was her normal and what needed medical attention.  It was a rough winter especially since she was in daycare and they get sick all the time.  She had a follow up with ENT in January.  Doc thought she was recovering well from surgery.  He wasn’t thrilled about her repeated sicknesses and slow weight gain, but decided to give her a little more time.  She went back in February for another follow up.  She was still struggling with the sicknesses and slow weight gain so he recommended surgery, Aortopexy, for her IAC(Innominate Artery Compression).  She had to meet with a cardiothoracic surgeon and they ran a few tests including blood work and an echocardiogram.  Her surgery was scheduled for the middle of March…..just 3 days after my birthday.  It was definitely an anxious birthday. 

Supraglottoplasty

December 3, 2014 – December 13, 2014

It was really nice being at home.  But every noisy breath was scary.  We tried to get back to normal….or a new normal because we would never be the same.  We put up the Christmas tree.  After a few more days at home, we went back to work and daycare.  I had been only at my new job for 2 weeks when Landrie went into the hospital and I had to take a week off.  Thankfully, my boss was very understanding and told me family comes first…you don’t hear that too much anymore in todays society.  

Over the weekend, I noticed a couple episodes of noisier than usual breathing but they did not last too long.  On December 9^th, one week after being discharged from the hospital (2 days being back to work and daycare), Landrie had an episode of concerning breathing that lasted a bit longer  and we got a call from the daycare.  My husband went to check on her but she seemed fine once he got there.  I decided that I was going to take her to childrens ER to have her checked out after work just to make sure she was ok.  After work, I picked her up and I started to cry in the hallway of the daycare center.  She was fine at that moment, but the stress of the last couple weeks had come crashing down on me.  The workers at the daycare were awesome.  We ate dinner and then I packed a few things just in case she was admitted.  My husband was leaving for a trip early the next morning and would be gone for a week.  So if she was admitted, he wouldn’t be around to bring me anything. 

 

They decided to admit her for observation due to respiratory distress.  I called my husband at 11pm at to let him know she was being admitted and he had to drive our son 45 minutes to my parents’ house at midnight.  After 24 hours of observation, the ENT said that her oxygen levels kept dipping so they were going to do surgery, Supraglottoplasty, the next day.  During this surgery, they would remove the extra floppy tissue.  Because they were adding her onto the schedule last minute, I had no idea when the surgery would be.  She wasn’t allowed to eat anything after midnight.  It was a very long and lonely day waiting for them to call us down.  They finally called her down late in the afternoon.  The hardest thing I have ever had to do was to hand my baby over to the doctors and walk away.  I cried the whole way to the waiting room.  The surgery went smoothly and in less than 2 hours I was in the recovery room with her….it was the longest 2 hours ever.   The ENT found that she had some other airway issues.  During the surgery, they did a bronchoscopy to take a look further down in her airway.  They found that she had mild tracheomalacia (TM), mild subglottic stenosis and there was an area of the trachea with a severe compression.  They believed this was caused by the Innominate Artery.  They were unable to pass the scope past this compression.  The next day they did a CT scan and confirmed it was Innominate Artery Compression (IAC).  They said that her trachea was about 90% compressed.  

Tracheomalacia (TM) is a floppy trachea (windpipe).  Subglottic Stenosis is a narrowing in the airway between the vocal cords and trachea.  Innominate Artery Compression is when the innominate artery that comes off the top of the aorta is compressing on the trachea. 

She had a few rough days of worsening breathing which is common due to swelling.  But she recovered well and we were able to come home on December 13, 2014 after 4 nights of being admitted.  Our plan was to see how she recovered from the surgery and evaluate if she would need surgery for the IAC.  I received a lot of information that I was not expecting.  It was a shock to find out there was something else going on and that it was something severe.  I had expected her to come out of surgery fixed and we could put all this scariness behind us.  But instead Airway Defects had delivered another unexpected punch.  And I realize that this is definitely not the end of the journey for us.  

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…..