Mother's Milk

by Anonymous 2:19 PM 2 comments

As it often does, life got rather hectic the last couple weeks with everything going on here and work back home (which I’m doing my best to keep up with remotely), so I’m a bit behind in providing an update.  I’ll do my best to catch you all up on the life and times of miss Juliet.

When I last posted, we were anxiously awaiting the formal swallow study.  The results of this study would determine whether we could even proceed with attempting to feed Juliet orally or whether she would have to undergo yet another surgery in order to implant a gastric/gastronomy tube, or g-tube.  It’s quite the production whenever you are required to go for imaging at this hospital.  Everything is on a basement level, usually down some dark, foreboding corridor through several sets of double doors.  When we arrived, Nicole the speech therapist, met us with a smile and her familiar face provided some relief of the anxiety we were experiencing.  We were each given a leaden smock with a thyroid-protecting neckpiece, and as we were donning our gear Juliet was situated on a sort of pedestal in front of the x-ray.  It’s a somewhat imposing looking setup, but we were extremely hopeful that our little fighter would overcome yet another obstacle.

Essentially, some of Jordan’s breast milk was fortified with barium to act as a tracer for the x-ray.  Nicole would watch the fluid as it enters Juliet’s mouth and follow it down her neck to see whether any would be inadvertently diverted into the airway and to the lungs or whether the full volume would travel the esophagus to the stomach.  There’s a monitor to the left of the apparatus where the x-ray can be viewed in real-time.  It would’ve been fascinating if we hadn’t been so heavily invested in the outcome for our baby’s future.  We had been working extremely hard to get her to take the mere 5 ml of milk that they would need in order to get a good look.  At times, she would take it relatively easily, and at others she would not take any at all.  She’d need to take a decent amount in a reasonably short period of time, as she could only be exposed to the radiation for so long before they would abort the study and consider it a failure.  There were worlds riding on a couple of swigs. 

Three perfect swallows was all that Nicole needed to see.  Our diminutive champion had beaten the odds .again.  Thank the Lord.

This victory would be short-lived, though, as almost immediately the focus shifted to nourishment sustainability.  In order to thrive, Juliet would demand approximately 130 milliliters per kilogram of body weight.  At around 3.7 kg, she’d have to ingest around 480 ml daily.  We just struggled for days to work her up to 5 ml.  We had another battle looming just ahead.

Initially, progress was slow.  We attempted feeds every three hours around the clock.  In light of the importance of all of this, Jordan and I decided to trade off night shifts.  One of us would stay at the hospital overnight to make the midnight, 3:00, and 6:00 feedings while the other got a decent night’s sleep back at the apartment, and we’d rotate each night.  This was exhausting, challenging work.  Juliet was trying, but it just didn’t seem that she would ever be able to consume the kinds of volumes they were demanding.   She was progressing, but in baby steps.

We found it to be quite an achievement when she got over 150 ml for 24 hours, and we should have known that the roller coaster was due for a dip…  Last Thursday, while Jordan was holding her, Jujubee had a series of full-body tremors.  I wasn’t there, but Jordan likened them to shivers - not violent, but concerning enough for a baby with multiple risk factors for seizures.  That evening she had an odd eye flutter that only added to the trepidation.  The doctors immediately called for neurology to send someone down, and before too long the EEG machine was being wheeled to Juju’s bedside.  She hates this thing.  The poor baby was born with more hair that I have and they use this thick, greasy goop (worse than petroleum jelly) to stick the dozens of probes onto her head.  It pulls at her hair and is uncomfortable on her already distressed head.

It might go without saying, her feeding progress suffered.  She backslid not insignificantly over the next two or three days while she was hooked up to the EEG.  The good news: the EEG did not find any seizure events or unexpected abnormal activity.   Thank God.

We were extremely relieved, but again, the celebratory period was fleeting.  With the neurological concerns out of the way, the team of doctors shifted focus back to the feeding.  As Juliet’s numbers were dropping and she was already far short of the mark, they began to apply pressure to pursue the g-tube.  We weren’t convinced.  We knew that she could do it, if she just had the right opportunity.  We fought for her.  We argued with the doctors, we played every delay tactic we could and we bought her more time.  The nights were long, and that made the days weary, but we pressed on. 

 We pulled out every trick we could think of to get this baby girl to eat, we held her sometimes upwards of 14 hours a day.   She continued to make progress.  She continued to surprise us all.  On Wednesday, we had gone to the apartment to shower and change and grab a bite to eat.  When we walked back in Juliet’s room, her feeding tube was gone, and she was dressed in little baby clothes for the first time in her life.  We were ecstatic! She had finally done it, satisfied all the doctors and avoided the surgery…  That’s what we thought… Our hearts sunk when our nurse made her way in and informed us that Juliet had pulled her own tube.  No decisions had been made, and the doctors were still leaning toward the g-tube.  The general surgeon even came by to try to get us on the schedule.  He had an opening Friday, two days away.  Absolutely brutal.  We pushed back to next week.  We just weren’t ready to concede defeat for her.  We still believe in her.

We persevered.  We kept up the feeds.  We stayed up all night.  We started a scoreboard on the window with dry erase markers.  We tracked every drop of fluid our sweet girl took.  We rejoiced with the good feeds, and we lamented in the bad ones. 

At around noon today, the attending physician came in to let us know that we are being transferred from the ICU to the regular pediatric floor, and unless there is some unexpected significant regression… we will be going home early next week.   Praise Jesus.

This is only the beginning of Juliet’s adventures, and the realization that we will truly be doing this all on our own without the help of our amazing PCICU nurses is terrifying.  Thanks again to every one of you for supporting us with your thoughts, prayers, best wishes, encouraging words, gifts, friendship, and love.  We honestly could not have made it through these last two months without all of you.  Please continue to lift us up, that these next few days go well and that discharge and transition home will go smoothly.  Lord willing, my next update will come from home.