Ashley Update: Friday Evening

Ashley moved to a regular room in Methodist’s neurological unit this afternoon. Various doctors have been in testing her and having her walk around: all physical signs are positive, and she’s able to get up and move around her room a bit, and she’s been able to eat a light lunch and supper.

In the next couple of days, she’ll get a radiological assessment to determine what the best course of treatment will be. She’ll do radiology at Methodist, but it won’t start for at least 7 to 8 days after her surgery.

She’s supposed to receive a CT scan sometime soon, and a full body MRI on Monday. Right now, it looks like she’ll go home Tuesday. Ashley’s husband Josh is holding up well and is rotating staying at the hospital with her with Ashley’s mom, Nancy. Josh’s mom, Peggy, is taking care of Lillian Grace, with an assist from Josh’s sister Cari and friend Sylvia. Lillian enjoys being spoiled.

Ashley thanks everyone for prayers and thoughts. We’re reading all the comments from the blog and Facebook and elsewhere to her; they’ve been a real source of comfort.

Whan that aprill with his shoures soote…

Lillian welcomed April (though March’s drought remains unbroken by showers sweet or otherwise) with a small party on her veranda and entertained her mom and grandparents with sweet smiles. She laughed at every gust of the cool southeasterly breeze.

 

Enjoying life...

My grandpa thinks I'm cute...

With grandma Nancy and my Mom

With my mom and great-grandparents...

 

 

Lillian Grace Denby Update: Christmas Eve, 2010

Not a creature was stirring...

Lillian Grace is 137 days old this Christmas Eve.

Lillian’s great-Aunts Bonnie and Linda, her cousin Brooke (in town from Arkansas and Dallas) and her great-grandmother Joan dropped by to see her today; grandma Nancy was the gate-keeper and took their temperatures and passed out masks before permitting entry to the baby’s room. Lillian was so happy to see them that she slept through their visit. Lillian acts like a newborn, so there isn’t much in the way of new news: she eats, she sleeps, she plays, she fusses. Mom and Dad are of course thrilled with the lack of excitement and drama; indeed, they are enjoying everything about baby Lillian at home — except for the one missing element: sleep for mom and dad.

Lillian plans a quiet Christmas at home (she isn’t ready to hang out with lots of folks yet); her Christmas dinner menu is pretty simple (mom’s milk, calorie fortification and iron supplement) and her mom and dad will have lentil stew and a bunch of goodies ferried in from other Christmas feasts. Lillian once again thanks each of you for your many kindnesses, for your continuing prayers and for your support; her family joins her in offering their thanks. Finally, Lillian has asked us to wish all of her email and web friends and supporters the very merriest of Christmases (her exact words were something like “Wa-a-ah, wa-a-a-ah,”  but we’ve gotten pretty good at figuring out what she means)!

Lillian Grace Denby Update: 12/21/2010

On my Boppy

Lillian Grace is 134 days old today.

On her first night home Lillian was a little restless and mom and grandma Nancy didn’t get a lot of sleep (they did let Josh sleep, since he had to be at work early). However, today, she got back in a more normal pattern of eating, playing for a while and then sleeping for two or three hours. She spent some time in her swing, some time on the floor on a blanket and the multi-function Boppy pillow, and, of course, she bounced on a number of willing knees.

Josh and Ashley are working on getting used to the reality of a baby at home (just as do all parents of newborns) and they’re making all the myriad of little adjustments to their lives that babies demand. Then, they’ve got a big back-log of to-dos that accumulated while they attended Lillian as she vacationed in the NICU; they are thinking that maybe they’ll get caught up around the year 2028 or so.

 

In my swing

Lillian’s Finnish relatives flew into town tonight and can’t wait to see her — after a couple of days of quarantine to make sure they did not bring exotic European bugs over with them.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/4/2010

 

Eat. Belch. Pass out.

Lillian Grace is 117 days old today.

Ashley and her mom Nancy went down to the NICU early this morning for Lillian’s morning feeding. Lillian was wide awake, and told her mom that she was ready for breakfast; in fact, she said — with just a touch of asperity — that she had been ready for some time. After partaking of mom for a good while, she stayed awake and studied on her mother and grandmother. She mentioned that she might still have one or two hunger pangs, so grandma Nancy gave her another 30 mL of milk. Then she nestled in on grandma’s shoulder and went to sleep.

 

Nancy & Lillian

Josh came down at lunch time and fed his 8 pound, 6 ounce baby with a bottle, then dandled her on his knee. She produced some special gas just for her dad and went back to sleep. Ashley and Josh left in the afternoon for date night, and the Houston grandparents came down to visit in the evening. Lillian ate, slept and pooped for them (Lillian’s grandmother is an artist when it comes to diaper changes to the great relief of her grandfather). While she sleeps, she entertains any who care to watch with her unique Facial Theater — an ever-changing series of dramatic facial expressions, accompanied by soft grunts, gurgles and squeaks.

The respiratory team lowered her oxygen flow from 3.5 liters to 3.0 liters this morning; Lillian maintained her oxygen saturation in the 30-32% range all day: so far, she is adapting well.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/03/2010

After Breakfast

Lillian Grace is 116 days old today.

Ashley met with Dr Mesvin, Lillian’s neonatologist, and Kristen, her nurse practitioner, to discuss recent test results and Lillian’s plan for the next few weeks. Lillian’s medical team continues to be pleased with the progress she is making with her breathing program — Lillian has responded well to slow but steady downward adjustments in her breathing support. The echocardiogram she had a few days ago showed that her pulmonary pressures have improved; this is an early indicator that, while she will go home with an oxygen tank to support her breathing, she will probably be on it for 3 to 4 months, rather than 8 to 12 months. However, it looks like, at the rate Lillian’s lungs are progressing, she will be in the NICU for another four to six weeks; she probably won’t make it home in time for Christmas.

The ecg also showed that the small vents in her heart (PDA and PFO) are either completely closed or nearly so. And, the pediatric ophthalmologist returned, and confirmed that her eyes have developed as they should; she won’t need to have them checked again until she is a year old.

Sweet & freshly bathed

Lillian’s transition to oral feeding has been very successful to date: she receives five of her eight daily feedings by breast or bottle, and Kristen wrote the orders to complete the transition to full oral feeding this evening. Lillian continues to gain weight (8 lbs 4.7 oz last night), and now seems to enjoy both breast and bottle (though mom is clearly far and away her favorite method of feeding). Lillian still has some issues with constipation (the result of the iron supplement), but hasn’t needed any artificial help lately; she strains mightily to fulfill this duty, and seems vaguely disappointed when she only produces a few smelly gas toots.

Age & beauty

Lillian has a few things to look forward to in the next week or two: she’ll get her second round of vaccinations on or around her four-month birthday; the nurses tell us that she’ll probably object to them much more than she did at two months, as she is more expressive and alert now than she was then. She’ll also receive an MRI of her brain. This will give the doctors a much more detailed look than did the ultrasound scans she received earlier, and pinpoint any problem areas; it will also provide a baseline for her pediatricians and developmental specialists as they monitor her progress over the next four or five years. And this weekend, her East Texas grandparents, Peggy and Keith, are coming into town to join Ashley, Josh and Nancy for an infant CPR class — Lillian is actually going to leave the NICU one of these days and they are going to be ready!

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/26/2010

Bouncing

Lillian Grace is 109 days old today.

One of the things Ashley and Josh have discovered recently is that while on the one hand preemie parents are delighted that their growing baby can now cry and fuss and be cantankerous in the most baby-like way, on the other hand they might occasionally find themselves wishing that she would go a little easy on the cantankerous-ness and try a little more sweetness and light. All 7 lbs, 11 ozs of Lillian spent the morning and evening testing the patience of her mom and dad.

Getting a good breast-fed meal from mom helped in the morning and at lunch time. Then, dad holding and swaying with her relieved the boredom of the NICU — for a bit.  Then, a session of back-patting — for a bit. Then, listening to mom sing — for a bit. Then, bouncing in her bouncer — for a bit. Then, mom reading poems — for a bit. For Lillian, it’s somewhat like the rest of us feel when the newness of our cable subscription wears off, and as we zap through each of the 400 channels, we realize there is not a thing of interest for us to watch. Even her evening breast-feeding bored her, and after Ashley and Josh finally got her to sleep, they went home; channel surfing is not in their evening plans.

Lillian is doing well on the nasal cannula and Vapotherm; she spent most of the day at 30% oxygen (down from 38%). The nursing team returned her to a nasal gavage today, though with a smaller tube than last time. They want her mouth to be unobstructed, encouraging positive associations with her oral feedings.

Ashley and Josh had a pleasant lunch with Lillian’s great-grandmother Joan, who is (happily) out of the hospital, home and recovering nicely. They plan to sleep late tomorrow morning and grandma Nancy is going to go give Lillian her morning feeding by bottle. She is trying to pretend that she is not excited.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/12/2010

 

Holding Lillian

 

Lillian Grace is 64 days old.

Lillian gained another ounce; she now weighs 3 lbs, 13 ozs, and the dietitians increased her feeds to 32 mL. At the grand rounds meeting today, Lillian’s team said that they are pleased with her progress; she is making headway on her biggest challenge — breathing — slowly, but surely. She will be on C-PAP for the next two to three weeks, most likely, though of course there are no guarantees, and then will move to nasal cannulae and an oxygen tank for support; she’ll likely continue on this type of support for a several months after she goes home. Her team thinks that she will be home before Christmas — and her family devoutly hopes this is the case! Ashley will start non-nutritive feedings on Thursday — she’ll do this twice a day to start. The team has warned her that this may be difficult at first, and that Lillian is likely to have some apneas while feeding.

Lillian’s grandmother Nancy got to help Ashley dress Lillian this morning — it was the high point of her day. St Thomas’ School Nurse Anne Sexton, whose mom is in Memorial Hermann Southwest, took the opportunity to drop by and take a quick peak at Lillian — we were much relieved to receive the Sexton Seal of Approval. Ashley spent a big chunk of the afternoon holding Lillian while she ate and slept; Ashley’s grandmother Anne Graves got her a specially designed nursing pillow (called a Boppy) that is a big help for Ashley when holding Lillian — even a gorgeous baby weighing only 3 lb, 13 oz gets heavy after an hour or two.

Thanks for your prayers and support!