Another Beginning

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It wasn’t supposed to be this way….

Well..actually…I wasn’t supposed to go into labor at 24 weeks..or have two babies at 26 weeks…

But…given the circumstances…we expected to “graduate” the NICU and to leave with our two beautiful babies….

Instead, two months into our journey…we left with no babies…just two coolers of breastmilk…

Following the ambulance…that was transferring our babies to a more intensive level of care.

And waited…for what seemed like a lifetime…until they were settled in…and we could see them again.

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And…even though we were “experienced” NICU parents…we were starting all over again….

A new NICU, new doctors, new nurses, new policies and procedures…

We felt lost…alone…afraid…

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And then…we decided to let go…we stopped comparing NICUs…we rebuilt relationships…

And just like the first NICU….this one started to feel like our “home away from home” too…

And so…we were able to focus all of our energy on the two things that mattered the most…

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And that – was a very good thing.

Because just a few days after our arrival, ENT did the first (of many) flexible bronchoscopies to look in Audrianna’s airway….and confirmed, for the first time, what we seemed to instinctively know….

Except…a bit more complex than we imagined…

Breathing…..would be extremely difficult…due to:

(1) Unilateral Choanal Atresia = a congenital narrowing of the back of the nasal cavity that causes difficulty breathing. The “unilateral” term means that it only affects one of Audrianna’s nasal passages.

(2) Subglottic Stenosis (SGS)/Tracheal Stenosis = a narrowing of the airway below the vocal cords (subglottis) and above the trachea. Subglottic stenosis will involve narrowing of the cricoid, the only complete cartilage ring in the airway. This narrowing is often caused by scarring in the larynx just below the vocal cords but may also involve the vocal cords and affect the voice as well. Tracheal Stenosis = Tracheal stenosis is a narrowing of the trachea (windpipe)

(3) Possible Subglottic Hemangioma = a large mass in the subglottic airway causing varying degrees of airway obstruction. They grow rapidly for at least 12 to 18 months followed by slow shrinking (called involution). However, not every subglottic hemangioma will shrink completely. Many require active intervention because of their life-threatening nature in the airway.

(4) Possible Vocal Chord Paralysis = a condition in which the vocal cords cannot move. It may affect one side (unilateral) or both sides (bilateral)


You never know how strong you are…until strong is the only choice you have…


3 thoughts on “Another Beginning

    The Real Beginning « Breathe... said:
    May 30, 2014 at 5:17 pm

    […] make a long story […]

      jen said:
      June 2, 2014 at 8:55 am

      I have finally found someone who also suffers vocal chord paralysis! My son had that condition. He just turned 9 months old last Wednesday. He was living 24hrs a day on CPAP until an operation at 4 months old. He had a tracheal reconstruction using a cartilage graft from his ribs. He can now breath on his own since the op. He is doing really well. I feel your pain. We lived in hospital for nearly 5 months. Email if you want to talk more.

    Breath: Check; Eat: Hmmmm « Breathe... said:
    July 15, 2014 at 6:17 pm

    […] until that point, Audrianna’s breathing related concerns were so significant that learning to eat became less […]

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