On The Night You Were Born


Luke and I received a multiple copies of Nancy Tillman’s On The Night You Were Born before Olivia was born. Gift givers warned me that it was a “sweet” book, and I knew to interpret that as “tear jerker for any extra-hormonal, over-tired new mom”.

In the days following Olivia’s birth, when we were aware of her fragile medical state, I couldn’t bring myself to pick up this story. I wanted to… badly. I wanted to read it to her – with her. But I had a hunch a full-on-ugly-cry-meltdown would ensue.

One night, when we were back at the house, I made my way slowly to her nursery. I found the board book tucked away in a basket of books, and sat on the floor. I read the book quietly to myself, and I’m pretty sure I cried the whole way through. The next day I mustered up the courage to bring it with me to the NICU, and a few days later I read it aloud to Olivia during a quiet one-on-one moment. I cried. Again. But I loved reading it to her. I loved every page. I found myself thinking “this is my favorite line” as I read each page. I’d flip the page, read another beautiful verse, and think “no, this is my favorite line.” My mind repeated that thinking page, after page, until the very end.

I’ve since read this aloud to Olivia a handful of times. Each time when it’s just the two of us, enjoying a quiet moment. Sometimes in the morning, sometimes before we leave at night as a bed time story. I’ll wait until the nurses have finished doing her up, or find a time when dad steps out to get a coffee. I like this book for just the two of us.

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, “Life will never be the same.”

Because there had never been anyone like you… ever in the world.

So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name.

It sailed through the farmland high on the breeze, over the ocean, and through the trees…

Until everyone heard it and everyone knew of the one and only ever you.

Not once had there been such eyes, such a nose, such silly, wiggly, wonderful toes.

When the polar bears heard, they danced until dawn. From faraway places, the geese flew home. The moon stayed up until morning next day. And none of the ladybugs flew away.

So whenever you doubt just how special you are and you wonder who loves you, how much and how far, listen for geese honking high in the sky. (They’re singing a song to remember you by.) Or notice the bears asleep at the zoo. (It’s because they’ve been dancing all night for you!) Or drift off to sleep to the sound of the wind. (Listen closely…it’s whispering your name again!)

If the moon stays up until morning one day, or a ladybug lands and decides to stay, or a little bird sits at your window awhile, it’s because they’re all hoping to see you smile…

For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again…

Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.

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14 Days Old: Morning Rounds

An update from overnight and rounds.

It was a tougher night for Ms. Olivia. Respiratory struggled and an x-ray revealed a collapsed right lung. Increased ventilator settings and position changes alleviated. AM exams indicate she has yet to fully recruit her right lung (i.e., she’s still recovering). In rounds, they discontinued direct positioning on her sides. They encouraged movement and upright positioning, resulting in an inclined bed and more time in mom’s arms. Chest PT will be increased to every 3 hours (Q3) and they’ve ordered a “buzzy” (buzzyhelps.com) for continuous lung stimulation.

Feeds suspended from midnight to 4 AM, as her stomach returned green colored residuals. They ruled it OK and continued at 4 AM. They will redraw residuals at noon to check again. Depending on progress, they may order medication tomorrow to help her digest. A suppository is in her future if she does not stool by 4 PM.

A lab update informed us that microarray genetics results came back negative. Dr. F has not stopped by yet to describe the results (they came in overnight). The results reconfirm mom’s prenatal tests, and rule out commonly known chromosomal issues. Doctors previously intimated that any genetic condition of Olivia’s could be of the very rare type. Additional genetic tests are pending.

Glucose levels rose slightly overnight but recovered on their own.  Her TPN will be adjusted down for glucose as a precaution. They continue to reduce her sodium levels as her kidney performance looks good.

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Making It Facebook Official

Before I found out I was pregnant with Olivia, I was surer than sure that one day I’d be that annoying mom – posting pictures of my children continuously across each and every social channel. I imagined a well planned “we’re expecting” photoshoot. I saw us crafting an overly stereotypical gender reveal post. And I was sure that either one or both of us with be uploading a “welcome to the world” photo to Facebook within minutes of delivery. I mean, I half expected to be live tweeting my labor. (Kidding, kind of.)

But when I actually became pregnant, I was surprised to find myself feeling protective of our news. Leading up to the 3 month “safe zone”, I began thinking that perhaps sharing every pregnancy symptom and milestone on Facebook wasn’t for me. I started treasuring my pregnancy in a very private, and personal way, and I suddenly felt as if sharing anything on social media (let alone over-sharing) was borderline inappropriate. Our challenges between weeks 12 – 24 reinforced my hesitation to keep our pregnancy progress off social media, and it was only after we received as many positive prenatal tests results as we possibly could receive that I finally agreed to share with the Facebook world we were expecting.

Then Olivia was born. Sweet, sweet Olivia. How I imagined Olivia coming into this world was far from how it happened, and these first couple of weeks with our little girl have rocked us to our cores.

Once again, I found myself feeling protective of my little girl, my new family of 3, our unexpected and heartbreaking situation. In the days following my delivery, I wanted to talk to only family and a small handful of friends. Some of the women I’ve always considered best friends didn’t learn I had gone into labor for almost 2 weeks.

Days went by and Luke began asking whether I was comfortable sharing our news on Facebook. As we approached my due date, I agreed it was an appropriate time. Too many people were texting us, asking how I was doing in anticipation of my due date. And we were happy. We were proud to be parents, and proud of our little girl, and wanted to share her with the world.


With over 500 reactions and almost 100 comments, I’d say our little girl made quite the splash in the social world. Making mommy and daddy and the BN world proud.

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13 Days Old: Evening Update

Update from the day.

  • Feeding paused after a mid-day check showed she was not digesting the volume being given. They refed her residuals so it will remain in her stomach, and they’ll check again at 8:00 PM to see if she has digested more. If she digests what was fed back, they’ll restart feeds accordingly.
  • Neuro informed us they are waiting on a pediatric neuromuscular specialist to assess Olivia, since she is a non-standard case. The specialist returns on Wednesday. We are holding until then.
  • The GI team updated their testing plan to include a HIDA scan. This is an assessment of the flow and functioning of her liver. This testing uses radioactive traces that act like bilirubin to map the flow of digestion. Since it’s a complex test and requires transporting Olivia multiple times, the core team may recommend holding this until after neuro weighs in.
  • Respiratory remained the same.
  • Olivia had some holding time with momma. She otherwise was asleep most of the day.

No other major progress or declines today. This weekend will likely continue to focus on feeding.

Finally, her NICU core team is switching under the care of attending. Dr. S’s rotation ends tonight. The transition started today. Dr. P rotated off as well, replaced by fellow Dr. M, however, she is covering nights this coming week and will continue to monitor Olivia.

Update: the 8 PM review found she had processed 5 MLs of breastmilk (and returned only 3). They are restarting now, and adjusting for the difference. That’s good news!

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13 Days Old: Morning Rounds

Updates from the morning & rounds.

  • Olivia continued to progress with feeds: giving back a net 2 MLs in a check last night and nothing this morning. They will increase her to 2 MLs per hour. She also had a stool last night, which means she’s digesting. At her current age and weight the goal is to get her to 15 MLs an hour. Getting from 2 to 15 MLs an hour will take time but they’re continuing to closely to monitor her tolerance for feeds and will increase volume when appropriate.
  • Overnight her CO2 levels increased slightly and they adjusted her pressure support accordingly. They continue to look for opportunities to ween back on this. Her X-rays do look better but they need to wait for the next round of blood analysis before adjusting the ventilator.
  • Bilirubin increased slightly overnight. The rate of increase is lowering, which is positive, however we are hoping for a decrease in total amounts, especially direct bilirubin.
  • A bunch of tests came back normal so they continue to rule various conditions, helping us to focus our search for a diagnosis.

Some good and some bad updates today, but mom and dad are really excited for the feeding progress. We hope it continues.

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12 Days Old: Evening Update

Updates from today. Good day.

  • Olivia started her feeds today. She received 4 MLs and gave back 4 MLs, however this is being viewed has okay since she usually gives back a 3-6 MLs of stomach secretions. She is continuing feeds throughout the evening.
  • Respiratory was good today and the amount being suctioned is decreasing.
  • She got about 1.5 hours of skin-to-skin time with mom today.
  • She also had a visit from her Grandparents.
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12 Days Old: Morning Rounds

Good morning. Updates from rounds.

  • Primary goals are improving respiratory. No changes in ventilator settings, but continuous PT and repositioning. We may expect another attempt coming off the ventilator in the coming days, based on performance.
  • She will start a small, but continuous amount of mamma’s milk today.
  • They are going up on total fluids to 120/kg/day from 110 based on her improved kidney performance. They are slightly decrease her sodium intake (as positive sign).
  • They will discontinue (DC) the catheter (as we thought they may do yesterday).
  • They also slowed the rate of several tests and DC’d others. These are positive events as they reduce the amount of blood drawn, equipment attached, and other tests.
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11 Days Old: Evening Update

  • Olivia was excited to have a special visit today from her Grandparents (the Priors)!
  • No major updates on her condition.
  • They have closed out her kidney issues as they believe it’s back to normal. They will be removing her catheter later tonight as regular urine samples are no longer needed.
  • She had a large blood draw around 4 PM for a bunch of tests ordered from the core and GI teams.
  • Holding time with mom was cancelled today as she got a little fussy post blood draw.
  • Dr. P presented her case today to the hospital department heads in a scheduled monthly meeting. We have some new ideas flowing for tests and areas to investigate from that meeting.
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11 Days Old: Morning Rounds

Good morning. Updates from rounds.

  • She was stable over the evening.
  • The roving atelectasis continued, with her right lung showing partial collapse in an overnight X-rays. Shifting her position appears to help. They continue her two lung medications.
  • Her feeds (mom’s milk) are delayed to let her continue to show signs of progress. She is back on TPN and lipids and her total fluids are increasing tonight (good).
  • The renal issue appears stable and they will continue to monitor (good).
  • We await liver tests. Her direct bilirubin continues to rise. They are starting phenobarbital as a treatment.
  • Official results from the MRI showed that she had bleeding inside the skull from birth trauma (previously suspected only between skin and skull). This is recoverable and not causing any harm. She showed signs of a stroke during birth, which is also expected to be recoverable.
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10 Days Old: Evening Update

Updates for the day.

  • Preliminary MRI results didn’t show too much, which is good. There was minor injury related to the stress at birth, but this is not of major concern to anyone at this time.
  • She continues to show positive signs from OT and is starting to show active range of motion (mean she’s moving more on her own, in addition to having a broader range of motion).
  • She is back up on her fluids.
  • She’s breathing well and continues to improve on ventilator settings (reducing the rate it’s breathing for her – she’s down to 45).
  • Feeding may resume again tomorrow.
  • GI came by and they are kicking off some blood tests check for metabolic issues and to look into her liver and gallbladder performance WRT direct bilirubin.
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