Sunday, November 19, 2017

Baby Beth - RSV



As you may remember, the week before Miss Beth was born, all of our children were able to join us in Houston.  Three days before the scheduled C-section, Elle and Ana had both come down with very nasty coughs.  I took Elle to an Urgent Care in Houston just to make sure it wasn't the flu or strep or anything contagious.

 The doctor assured me it was just allergies.

  I bought some Claritin.

On Beth's birthday, Elle and Ana were not allowed into the NICU to visit because of that cough.

When we returned home a week later, all the kids were coughing.  I tried to keep them at a distance, but you just can't keep a three year old who has missed her mamma on the other side of the room for very long.  And I was still hoping it was just allergies.

When Beth developed a stuffy nose and cough a week and a half later,  I took her to our pediatrician immediately.   She thought it likely just a cold, but cautioned me to keep a close eye on her throughout the weekend and not to hesitate to bring her to the Emergency Room.  She said, and I quote, "Never trust a newborn.  If she looks at you funny, take her to the ER."

I watched her anxiously through the rest of the afternoon.  By that evening I was worried that she was retracting when she breathed, so I took her in to the Emergency Room.  I explained her doctor's concern.  I explained the crazy AVM going on in her head.  I explained my worry that her struggle to breathe would be too much for her already stressed heart.

They told me she just had a cold and sent us home.

I spent the night watching YouTube videos on how to diagnose respiratory distress in rural India.

All day Saturday I counted her breaths and measured the retractions.  She could barely eat and would vomit up the thick mucus that was clogging her nose.  I was practically hyperventilating as I struggled to employ The Nosefrida (a mouth powered suction device) to clear her airways. By that evening I was certain she was in distress and we returned to the Emergency Room.  This time they ran labs and diagnosed her with RSV, Respiratory Syncytial Virus.  I was relieved to have my gut instinct validated.  Truly, this was no harmless cold.  But discouraged when they once again sent us home.  The doctor du jour told me that she was well oxygenated, even if retracting *slightly*, that there wasn't much they could do but keep her suctioned and I could do that at home.  Even though it could be fatal for preemies, she was a "healthy full term baby".  If I was still worried, I could always try Urgent Care.

Sunday morning found me pinching her fingers and toes as I Googled "capillary refill".  Her hands and feet were ice cold.  I was dreadfully uncomfortable as she refused to feed.   After her second episode of turning grey around her mouth I had had enough.  I skipped the Emergency Room and went straight to the Pediatric Urgent Care.  They had her on oxygen in two minutes and within the hour she was finally in a room at our local Children's Hospital and being cared for by a team of doctors.  By this point she was too sick to be fed, even with a bottle and severely dehydrated.  She spent four days on oxygen, much sicker than she ever was in Houston.  I was ridiculously happy when a full team of doctors marched into the room and gathered around her bed.  Besides the obvious and immediate needs of clearing the superthick sludge from her nose, they also ordered ultrasounds for her head and an echocardiogram for her heart.  The poor little dear was so dehydrated that they couldn't place an IV in her arm.  It had to be inserted in her head.



She looks so sad and sick in this picture.  The nurses upstairs couldn't believe the ER staff downstairs sent a baby less than a month old home with RSV.  They explained that typically such a diagnosis in a baby that young meant automatic admittance.

As much as I was sad that my poor little lamb was so sick, the six days that I spent with Beth were such a blessing.  I was forced to just rest.  There was nothing to do but sit and snuggle and let someone bring my meals on a tray three times a day.  It was blissfully quiet and peaceful.  I badly needed to quiet my heart and prepare for the next three months as we waited for our second trip back to Houston.  When we left the hospital not only was she a healthier baby, I was a healthier mom.

With the dreadful RSV behind us, we settled in to a sort of normal.  Baby Beth was holding steady.  Her heart was large, in the upper limits of normal, but normal nonetheless.  Dr.  Chen's advice still held true, treat her like a normal baby.  And so September melted into October.  When we returned for her 8 week checkup, we were given a surgery date.  Wednesday, November 29th.  The week after Thanksgiving.


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