A crash course in Luella’s health

(Birth trauma trigger warning)

Baby Luella came into the world on one wild ride.

Quite literally: just hours after being born by a planned home birth turned emergency c-section, she was airlifted with Mike to Seattle Children’s Hospital. Luella had severe meconium aspiration (i.e. she pooped in utero and swallowed it) and wasn’t breathing for several minutes after birth.  Understandably, this caused a whole host of issues with her lungs and brain. She stayed for three weeks in the NICU and another three weeks in a regular inpatient unit. 45 days after she was born, she was finally able to come home and start the life we imagined, albeit with a few additional accessories.  Luella had at-home, full-time oxygen for a month and, now at five-months-old, still has a feeding tube that goes up her nose and into her stomach.

2013-07-05 22.03.58

Two days old.

Luella’s lungs are largely recovered after being filled with sticky, tar-like meconium although we still have to be very careful to prevent her from getting sick and stressing out her system.  She no longer wears oxygen during the day; you never appreciate having an untethered child until you can’t carry your baby more than 30 feet from their oxygen tank!

Unlike her lungs, the progress of Luella’s brain recovery has been less linear.  She had a seizure after birth and an MRI soon after showed that she has injury to about 15% of her brain.  This injury means Luella has had to learn many things that come naturally to most other babies.  Most notably, she has had difficulty learning how to swallow effectively and has a feeding tube for the majority of her food.  While she now takes some bottles, we have to thicken her milk while she figures out how to manage the mechanics of her swallow.  Luella also has other developmental delays and will likely continue to face developmental challenges as she gets older.

Luella at Five MonthsFour months after she was born, Luella began exhibiting some odd, jerking behaviors.  Neurologists diagnosed her with infantile spasms, a rare  and serious disorder that completely stunts her development until the disorder is under control.  Luella began taking a very high dose of steroids to try to eradicate the abnormal brain waves associated with the disorder.  Her last EEG (brain wave test) showed the abnormal brain waves were resolved, but we recently began seeing some suspicious activity that may be spasms or other seizures.  We will continue trying to wean her off the steroids if her upcoming EEG still looks okay.

These days, Mike and I double as parents and psuedo-medical professionals.  We administer seven daily medications, put down feeding tubes, get weekly blood pressure checks, and talk to doctors and pharmacists more than we talk to our friends.  We also do a lot of “normal” parent things, like change a million diapers, go on walks, take snuggly naps, and take so many pictures that my phone constantly warns me that the “memory is almost full”.

All this to say that answering the kind question,”How’s Luella?” is complicated and different every day.

But different can be good, right?

On Blanket

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4 thoughts on “A crash course in Luella’s health

  1. Thank you for the update on your sweet Luella. I’ve known several babies who suffered from this birth trauma. Thankfully, they are all older now and doing fine. I hope Luella continues to grow and improve. You and Mike are sure learning a lot and learning is good, right? 🙂

  2. Miles had infantile spasms as well. Scary. But so grateful to have them resolved. Thankful for western medicine, in that respect!

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