In Memory of Ashley: 8/17/1979 — 12/13/2012

Just one year ago, a little after midnight on December 13th, Lillian’s mom, Ashley Elizabeth Graves Denby, died after a long and difficult illness. We all miss her terribly.

Ashley would have told you that she hadn’t figured out what she wanted to be when she grew up, until one day she found herself married to the love of her life, Josh Denby, and the mother of a tiny 1 pound 8 ounce girl whom she named Lillian Grace. And then she knew.

Tiny babies like Lillian, born at only 23 weeks, face long odds just to survive. But Ashley never doubted, and devoted herself to Lillian’s survival. She virtually lived in the NICU. She spent hours in the lactation room pumping breast milk (often difficult for moms of micro-preemies) for Lillian; that milk was one of the keys to Lillian’s not only surviving, but flourishing. And, though she was with Lillian far too short a time, and Lillian will have few conscious memories of her mom, I think that somewhere in Lillian there will always be a spark, a laugh, a spirit that comes straight from Ashley.

Remembering Lillian’s Mom on her Birthday

Ashley and Lillian August 19, 2010: the day she held Lillian for the first time

Today, Saturday, August 17th, would have been Ashley’s 34th birthday. Although we haven’t written much about her since her death in December, we think of her every day. We see glimpses of her in her daughter Lillian, whose robust health and joyous outlook owe so much to Ashley’s fierce devotion and sacrifice. We remember her kindness, her strength and her quiet but very real faith and hope. At some point this weekend, we’ll go eat Indian food in her memory and, I hope, weep a little and laugh a lot. Love you, Ashley Elizabeth.

Lillian Grace Denby Update: 12/10/2010

Mom says everything will be ok...

Lillian Grace is 123 days (8 days adjusted age) old today.

The pleasures of a baby’s day are simple ones: eating, sleeping and pooping. Of course, there are other ancillary pleasures: being bounced on someone’s knee, getting bathed and massaged with lotion and so on; but if there’s a problem with any one of the Big Three, it can put a real damper on a baby’s day.

...I'm not so sure...

Lillian (as a consequence of some of the fortifications added to mom’s milk, especially iron) has suffered on and off from constipation, and is again. You can see her working hard: her face screws up and turns an interesting shade of purple, and the rest of her clenches up; but for the past several days all she has produced are some loud and smelly eruptions of gas. As a result, she was irritable for much of the day (though her appetite remains good) and did not sleep as much as she normally does. The staff is conservative with laxatives: they don’t want her to become dependent on them, but if she hasn’t been productive by tomorrow, she’ll likely get some assistance.

 

...but what's a baby to do?

Lillian’s blood pressure has been a bit high for the last several days as well; this may be related to the constipation, but the team ordered a renal ultrasound for this evening just to be sure there are no problems in her kidneys. The echocardiogram last week ruled out potential problems in her heart and lungs — the pressures there are fine. Her breathing continues very stable off the wall at .75 liter flow.

In an effort to stave off parental exhaustion, Ashley has been spending the morning and early afternoon at the NICU, and Josh has taken the late afternoon and early evening NICU shift when he’s not working (Josh has his full-time library job and a part-time job at Borders). They hope that when Lillian is home they’ll be able to sandwich the odd nap into their schedule.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/01/2010

Nuts about both my grandmas

Lillian Grace is 114 days old today.

At the beginning of the day, Lillian lay quietly in her crib, watching and listening while her two room-mates raised a ruckus; they were hungry tykes, and Anetha, one of Lillian’s favorite nurses and, next to Lillian’s mom, her leading fashion adviser, was hopping, and had to call in extra hands to hold and feed them. Lillian waited calmly and patiently for her companions to finish.

Slammin' down a bottle of Mom's Home Brew

Once the room-mates were finished eating and settled back in their beds, Lillian had her morning CPT massage from Respiratory Therapist Ivy; then, she luxuriated for a while in a pleasantly warm bath and bathed with her favorite lavender-scented soaps and lotions. After drying off, Anetha helped Lillian select a pink and green outfit dedicated to Lillian’s two favorite grandmas, Peggy and Nancy; then Lillian enjoyed a warm breakfast of the finest mother’s milk (her room-mates made do with formula), with sides of caffeine and iron supplement. Finally, swaddled comfortably in her blankets, she rested for a time from her labors.

After bathing

The rest of the day passed uneventfully; her weight held steady (last night was a big pooping night) and she shows no sign of fatigue at her current respiratory settings. Her mom got some much-needed sleep (though not as much as she’d like — a problem familiar to nursing moms and most parents of newborns).

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/10/2010

 

Lillian

 

Lillian is 62 days old.

Lillian spent her first night in room air, without the assistance of the isolette‘s temperature and environmental controls, and did very well. Within the next day or so, the team will switch out her isolette for an open-air baby bed; while the isolette can be used with the cover raised, it is primarily designed for providing an isolated, secure environment. The new bed will make it easier for the nurses and mom and dad to handle Lillian, and for her admirers to see her.

She’s back up to 3 lbs, 11 ozs, and eating everything mom and her dietitians will provide for her. When her nurses prepare a feeding, they take a tube of mom’s milk to which the dietitians have added supplements, pull it into a large syringe, and then run warm water from the sink to use to warm the milk; after it’s warm enough, they put the syringe on a pump, and attach a tube from the syringe to her oral gavage (a tube which runs from her mouth down to her stomach); then, they set the pump and it pushes the syringe and delivers the milk over a 30 minute period.  Ashley and Josh believe that Lillian now associates the sound of running water with feeding time: every time someone turns on the water in the sink, Lillian’s oxygen saturation levels zoom up.

 

Lillian & Ashley

 

Ashley kangarooed with Lillian this afternoon, and had a wonderful time. She tied a pink bow to the outside of Lillian’s cap to brighten it up a bit. (There seems to be some kind of association between little girls and the color pink; one of you sociologists out there might want to look into this). Lillian received her vaccinations last night, and had no noticeable side effects from them.

Thank you for your prayers and support.

Lillian Grace Denby Update: 9/28/2010

Lillian and Ashley

Lillian Grace is 50 days old.

Lillian is holding steady at 3 lbs, 2 0zs. After yesterday’s blood transfusions (one at noon and one in the evening), the respiration team lowered Lillian’s breath support to 22 bpm; her morning blood gas reading was very good, so the plan is to lower her again tonight. After receiving all that blood, the team was concerned that she had a bit too much fluid, so they gave her a dose of Lasix — a diuretic — in her milk today; as a result, she may lose some weight.

Ashley attended the grand rounds meeting this afternoon. Results from yesterday’s echocardiogram are not back yet. The team mostly talked over Lillian’s breathing plan. Yesterday, they had discussed moving Lillian to the CPAP when she is stable at 20 bpm support from the ventilator. After some discussion, the team decided to continue to push her down to around 10 bpm support before moving to CPAP; this should help build her endurance, and make it less likely that she’d have to go back from CPAP to vent — or, if she does, it will (we hope) shorten the time she’d have to be on the vent. We still think — if all goes according to plan — that Lillian will move to CPAP in about a week.

Ashley and Lillian got to kangaroo again this afternoon, and Lillian got to wear her little green hat. Lillian appears to be working out the theory and practice of thumb-sucking despite the interference of ventilator tubes and feeding gavages; drooling on mom seems to be an important part of this. Josh came after work and spent some time hanging out with his girls.

Lillian Grace Denby Update: 9/2/2010

Lillian Grace is 24 days old.

Today there’s big news: Lillian weighed in at 2 pounds! The NICU team believes that the measures they’ve taken over the past few days have been effective; they believe they’ve hit a ‘sweet spot’ on her ventilator settings; tonight they’ll try challenging her a bit, and again try to start the process of gradually weaning her from the ventilator: we’ll see — lung development is likely to be very slow. But today we’re just enjoying the weight gain milestone — now it’s on to 1,000 grams!

Other than that, it was a pleasantly calm day in the NICU; we’ve got another video of a diaper change — this one performed by Lillian’s mom (warning: if baby poop grosses you out, don’t watch!). We do realize that while we find these videos endlessly fascinating, not all of you may share that fascination — Lillian’s current repertoire of acting bits is somewhat limited and might seem just a tad repetitive.

This may also seem repetitive, but we need to tell you every day anyway: thank you for your prayers, support and notes — getting through the day without them would be far more difficult.

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