The Beginning

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I’m not sure where the beginning…really begins…

A positive pregnancy test…?



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A seemingly perfect pregnancy…?…..Until…


Preterm labor….that never stopped…that resulted in hospital bedrest at 24 weeks…?


Magnesium sulfate…betamethasone…fetal monitors…?

Or an unexpected delivery at 26 weeks…?

It’s hard to remember the beginning….

But the one thing that I will never forget…Audrianna’s cry…so faint…so soft..announcing her arrival…and then…Cole’s silence…believe me…the irony of this is not lost on…anyone…

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*Please Note: This post may be a little heavy with medical terminology/medical equipment talk. Additional information related to common equipment used in the NICU can be found here…I also added links throughout the post to amazing places with wonderful information on preemie development and care…happy reading 🙂

As “26 weekers” Audrianna and Cole were immediately intubated (endotracheal tube inserted into the trachea) and put on ventilators (breathing machines that deliver warmed and humidified air to a baby’s lungs. The mechanical ventilator temporarily breathes for them). You can see the “ETT” tubes in their mouths in the pictures below…

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Two days later, the tubes were removed (also referred to as being “extubated“), and they were taken off the respiratory support of the ventilators, and placed on C-PAP machines (continuous positive airway pressure to maintain pressure delivered to a baby’s lungs. The tubes are attached to a mechanical ventilator, which helps the baby breathe, but does not breathe for the baby). You can see the C-PAP machine below, a large plastic piece fits over the baby’s nose and kept in place with a special hat.


We were over the moon.

Our two-day old, 26-weekers, already making big strides….

And this is when we first heard the phrase “honeymoon period” (a short period of time immediately following delivery, when a micropreemie appears to be making progress, typically lasting 24 to 72 hours).

And so we tempered our emotions and held our breaths, and waited for the “honeymoon” to be over.

But the next few days and weeks brought more good news: a series of negative ultrasounds (no brain bleeds), tolerating small amounts (2 mls) of breastmilk via feeding tubes with very small increases in the amount of milk that they were given, steady weight gain, “sprinting” trials (interesting choice of terminology…it really is HARD WORK for those babies…but it means that the C-PAP was removed for brief periods of time and instead, a nasal cannula was placed in their noses, providing a small amount of oxygen), our first kangaroo care, and first diaper changes…

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Ironically, it was Cole who appeared to struggle a bit more in the beginning….

And Cole who was re-intubated first (endotracheal tube was re-inserted and he was put back on the mechanical ventilator)….13 days after being first extubated….

But Audrianna soon followed…three days later…and of course, we didn’t know it at the time, but this would be the last time that Audrianna successfully “breathed” on her own…

The days that followed were a blur of waiting, hoping, rocking…..and numbers….

The number of milliliters of breastmilk that were being pumped/tolerated, grams of weight gain, vent settings, number of breaths given per minute, pressure support, percent oxygen, blood gases and CO2 (higher levels of carbon dioxide usually signify that the baby needs more breathing support), and bilirubin levels…

But the most important number of all…the number of minutes that I got to hold them each day…

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Back on the ventilators, both Audrianna and Cole seemingly made progress. All of their levels looked good and the vent settings were steadily decreased (slowly turning the ventilator support down and requiring more from the babies to support their own breathing….)

And then…13 days after he needed to be re-intubated…Cole was successfully extubated….and never again required ventilator support to breathe during the remainder of his NICU stay…


But…Audrianna still required the ventilator support…and she didn’t like it…one bit…

Throughout the course of the next month, Audrianna required minimal vent settings (they actually couldn’t be turned down any lower).


And so, in the next month, she had four “controlled” extubations, meaning that the Neonatologists, Nurse Practitioners, and NICU team intended to remove the ventilator support to see if she could breathe…

But each “controlled” extubation, resulted in almost immediate “failure.”

Audrianna’s oxygen levels plummeted, she turned blue, her heart rate dropped, she panicked, she couldn’t breathe….and so, she was re-intubated. Finally, the team made two more attempts at extubating her after given her a low dose of dexamethesone, a steroid medication that usually helps preemies and supports successful extubation…but not for our Audrianna…

And as many times, actually more, that the NICU team attempted “controlled” extubations, Audrianna self-extubated (“uncontrolled” extubations in which Audrianna pulled her own tube out)…

In the first two months, Audrianna had 4 “controlled” extuabtions and 6 “uncontrolled” extubations….

Which, in the end, having the endotracheal tube re-inserted so many times, may have (at least contributed) to the difficulties that we continue to see today…


And then, after all of these “failures” and two months into our NICU journey….we were told that our wonderful team of NICU Neonatologists, Nurse Practitioners, nurses, and staff…

Couldn’t do anything more for Audrianna…

We were devastated…words cannot even describe how sad we were to leave the people with whom we had trusted with our children, with whom we spent countless hours with…

We were referred to another hospital, one that had the capacity for more intensive care…pediatric surgeons, pediatric ENT, pediatric pulmonology…(NICUs are arranged in care levels, Audrianna and Cole were born at a hospital with a Level III NICU and we were being sent to a Level IV NICU, the most intensive)

Which, luckily, happened to be only 2 miles away…

And thankfully, would allow Cole to be transferred as well…so at least they would be together…

And so, two months and two days after our journey began…Michael and I walked down the hallway…alone…

And took one last look back at the NICU…


And prepared to meet the ambulance bringing our babies to the new NICU…

And so maybe this is where the real story begins…..?


2 thoughts on “The Beginning

    Another Beginning « Breathe... said:
    May 23, 2014 at 10:16 am

    […] two months into our journey…we left with no babies…just two coolers of […]

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

    […] I have already written about the beginning…and another beginning…I think that this is truly the real beginning of […]

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