Lillian Grace and Ashley Denby Update: 5/11/2011

Me and my mom

Lillian Grace is 275 days (9 months, 2 days) old today; her adjusted age is 5 months, 9 days. She’s been home from the hospital for 4 and 1/2 months!

Lillian’s Official Stats as of Tuesday, 5/11:

• Height: 65.4 cm (.9 cm gain) 25.75 in
• Weight: 6804 gm (439 gm gain) 15 lb
• Head Circumference: 41.3 cm (1.3 cm gain) 16.26 in

My dad, my cat and me

Lillian had her 9 month check-up yesterday; Dr Rowland, her pediatrician, said she was “perfect”! (We agree with that assessment). Her development is right on track for her adjusted age. Her strength and muscle tone are excellent, and Dr Rowland thinks she’ll be sitting and crawling within the month. She’s eating cereal, fruits and vegetables twice a day and, as soon as she can sit on her own, will start to use a high chair and a sippy cup, and will get to try some meat.

Dad feeding me cereal and bananas

Ashley went to her surgeon, Dr Albo, for a follow-up today. Dr Albo removed the drain she’s worn since her last surgery and also removed the sutures from the site of the drain. Josh and Nancy will continue to change her dressings twice a day and she’ll go back to see Dr Albo in two weeks. Ashley is thrilled to be free of tubes and wires; she’s in a lot less pain, but still very limited in what she can pick up (i.e., she can’t pick up Lillian) and gets tired pretty quickly… but she feels a little better each day, and thinks the worst of the surgical part of her treatment is behind her. She sees Dr Darcourt, her oncologist, tomorrow, and they will decide on what non-surgical treatment is next.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/09/2010

On AirLife C-PAP

Lillian Grace is three months — 92 days — old today.

Last night the respiratory team switched Lillian to an AirLife nCPAP from bubble CPAP. The new machine provides an automatic variable flow, which helps compensate for Lillian’s preference for sleeping with her mouth wide open and for her constant wiggling, both of which tended to break the air seal needed to maintain the device’s pressure. Both Lillian and her mom like the new device’s headgear better: it’s easier to adjust, using head straps instead of tape, and less prone to coming apart when Lillian kangaroos with mom and dad. However, like all of the various breathing device headgear she has used, it resembles something that the bad guy in a low-budget sci-fi movie would wear. Her oxygen support needs continue to come down slowly: this evening she spent some time at 29% — her first time with less than 30% support.

 

Ashley & Lillian

Lillian now spends two hours twice a day on nasal cannula, once in the day and once at night. Tomorrow, when she goes on the nasal cannula at 3:00 pm, she will attempt a full feeding orally for the first time — both mom and baby will be learning and will have the support of the NICU‘s lactation nurse. Ashley has been doing breast pumping for three months; but she says the way babies go about things is different from the way mechanical pumps do — who knew?

 

Mirror, mirror...

When Josh got to the hospital in the afternoon, Lillian was awake and alert, so Josh got out the mirror they received yesterday, and Lillian spent some time looking at herself (she’s all girl). And, she’s gained a couple of ounces since yesterday, and now weighs 6 lbs, 4.4 ozs.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/2/2010

 

Breast-Fed & Happy

Lillian Grace is 85 days old today.

Ashley attended grand rounds today and discussed Lillian’s progress with her medical team. Dr Mesvin said that 85 days ago, when Lillian was born, he was not sure that Lillian would go home; today, he is confident that she will, most likely before Christmas. As soon as space is available, Lillian will move from her home in the Daisy Room of Level 3 (Critical Care) into a shared room in Level 2. She, as we have mentioned, is no longer classed as a critically ill baby; she’s now a “grower and feeder” — she weighed 5 lbs 7.5 ozs this morning, and eats 48 mL of milk at each feeding.

This afternoon, instead of giving Lillian a non-nutritive feeding, her team had her try feeding from a full breast. With the lactation nurse, the respiratory therapist and her care nurse all carefully observing, Ashley got Lillian in the football hold: Lillian latched right on to the nipple and proceeded to suck and swallow. She dabbled around for about 20 minutes and got 4 mL or so of milk down — a very successful first attempt. For the next several days, Ashley will continue to pump first, but not pump herself quite dry; then, the baby will get to practice, as in non-nutritive feeding, but with a small amount of milk as a tasty reward and with which to work on swallowing while breathing at the same time (a very useful skill, we’re told).

Lillian spent about an hour and forty-five minutes on the nasal cannula today: she’s slowly increasing her time on it. Her respiratory therapist increased the size of her C-PAP face gear as she’d outgrown the old one. Lillian was as pleasant and calm today as she was fussy and fractious yesterday — except when she was hungry!

Thanks for your prayers and support!

 

Lillian Grace Denby Update: 10/23/2010

Lillian Waves

Lillian Grace is 75 days old.

After 3 days during which Lillian only gained 25 grams, her dietitian yesterday increased her milk volume to 40 mL every 3 hours: this morning, she had gained 2 ounces and now weighs 4 lbs, 7.1 ozs. Her mom’s milk is fortified with calorie and nutritional supplements; these supplements occasionally cause constipation, and she won’t poop for a day or two. As of this afternoon, Lillian hadn’t pooped for a couple of days, so Andrea, today’s nurse, gave her a suppository; we expected Lillian to protest this indignity, but she slept right through it. In fact, Lillian slept soundly most of the afternoon: mom and dad visited early this morning and did some non-nutritive feeding; then, her Grandma and Grandpa, Peggy and Keith Denby, and her aunts Cari and Ellie , and her uncle Josh (Ellie’s Josh — not to be confused with Lillian’s dad Josh) and cousin Caitlyn came to visit. Those who hadn’t seen Lillian before remarked on how small she is while those who hadn’t seen her in a few weeks remarked on how big she is. Peggy got to touch and comfort her during one of Lillian’s fussy spells — a happy change from days when Lillian was in the isolette and even mom and dad had to limit physical contact with her.

In the afternoon, Ashley and Josh went to a wonderful baby shower given by Rebecca Buckner and Charlotte Pearsall at the home of Chris and Sally Bowhay. Many friends and members of Ashley’s and Josh’s families came: their good will, kindness and generosity caused Ashley to choke up more than once, and left Lillian well-supplied for the day she comes home from the NICU (we hope that day will be before Christmas); before that, you may even see some of her new clothes in pictures from the NICU. Most of all, Ashley and Josh enjoyed spending time with some of the many folks they now consider to be part of Lillian’s big extended family.

Ashley’s great-aunt Holly, her mom’s sister, came by the NICU after the shower to see Lillian. Fortunately, security at the NICU is very tight, and Holly was unable to take Lillian with her when she returned to the People’s Republic of Austin.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/11/2010

 

Swaddled & Sleeping

 

Lillian Grace is 63 days — 9 weeks — old.

Lillian has gained another ounce: she weighs 3 lbs, 12 ozs — 1700 grams. She is 17 inches — 43 cm — tall, and her head circumference is the same as last week — 27.5 cm. Lillian’s dietitians give her 30 mL of milk — that’s just over 1 fluid ounce — every 3 hours. But, since she is very fussy and cranky now before feeding time, they are considering another jump in the amount of her feedings: whatever other problems this girl has faced, aversion to food is NOT one of them. She becomes more baby-like every day, interacting in many small ways with her environment, and expressing her unhappiness or discomfort verbally and with a variety of facial expressions and gestures. Still, most of the time she is happily sleeping, and adjusting pretty well to the C-PAP. She did have one apnea episode today while feeding: the nurses are teaching Ashley how to help bring Lillian out of these, and today’s was over quickly.

Ashley held Lillian twice today, comforting her before her feedings, and enjoying her while she fed.

 

Out of the blanket

 

We can watch Lillian more easily now that she is in an open isolette and it’s much easier for Ashley or Josh to be actively involved in her care: keeping her C-PAP mask adjusted or re-arranging her blankets when she’s hot or checking her diaper when she is noisily flatulent and/or stinky.

 

Into booties

 

She doesn’t like to have her feet swaddled in the blanket and usually manages to work them out from under the blanket; then her feet get cold — Ashley admitted defeat today, and put some booties on her feet. I’m guessing that battles over clothes are going to continue for quite a number of years.

(We’ve got a new video of mom checking her out when she was squawking this morning: https://thedenbyclan.wordpress.com/2010/10/11/lillian-squawks-a-video/)

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/7/2010

 

Pink Polka Dots

Lillian Grace is 59 days old.

Lillian had a quiet day today: she’s back to 3 lbs, 10 ozs, and continues to do well on the bubble C-PAP; her oxygen saturation levels are not quite as steady — this is what we expected, as the effect of the steroids wears off — but they are still good. Her oxygen support ranges from about 30–45%, depending on what she is doing — when she is really fussy or active, the respiratory team increases support. She is already expert at dislodging her C-PAP mask — Ashley got her a pink polka-dotted shirt that has sleeves with pouches to cover her hands; she thought that might curb some of Lillian’s mischievousness; but that was a forlorn hope — Lillian likes to keep her nurses and respiratory therapists hopping. Lillian’s dietitian increased her milk volume to 30 mL and she continues to handle it very well; now that she is older, she doesn’t always poop everyday — but when she does, the volume is large and the smell is powerful. She has regular, loud bouts of flatulence: she is very proud of these productions.

 

Lillian's Toys

This evening or tomorrow, the nursing team will give Lillian her first round of vaccinations. Michelle, one of the nurse practitioners, warned Ashley that Lillian will likely be fussy for a few days after receiving them, and the team may have to increase oxygen support while her immune system assimilates the vaccines.

We’ve added a brief video of Lillian in Ashley’s arms this afternoon; we hoped to catch her making a cry or two, but she was happy and quiet all afternoon. We’re going to keep trying to capture her voice! https://thedenbyclan.wordpress.com/2010/10/07/lillian-and-ashley-a-video/

Thank you for your prayers and support.

Lillian Grace Denby Update: 9/21/2010

Lillian and Ashley

Lillian Grace is 43 days old.

Lillian gained 30 grams yesterday, and now weighs 2 lbs, 12 ozs (1260 grams). She’s down to 28 breaths per minute support from her ventilator, and continues to have good results from her blood gas tests.

Ashley attended the grand rounds meeting with the medical staff today; they are pleased with Lillian’s progress, particularly with her adjustment to the new ventilator: they pronounced it “slow, but steady improvement.” Ashley asked about Lillian’s lung x-rays, which show not much change: the team told her that clinical progress (i.e., how she’s doing on the vent and on weaning from it) is really the key measure right now; the x-rays are unlikely to show much change for some time. Her lungs are growing, and that is good as well; but she will probably have respiration issues for at least the next 5 or 6 years.

Ashley has been producing larger volumes of milk than Lillian can eat, and her freezer at home is full of her frozen milk, as is the freezer at the NICU. She is in the process of donating a portion of her milk to Mother’s Milk Bank, an organization whose mission is to accept, pasteurize and dispense donor human milk by physician prescription, primarily to premature and ill infants (you can find out more about them at the link). The other morning, Josh made his morning coffee, then found out they were out of (cow’s) milk. He really likes milk in his coffee. He stared at that freezer full of milk, and began to form the thought: “I wonder if…?”, but decided that even carrying the thought further might result in his becoming an outcast from decent society.

Ashley got to kangaroo today and we’ve added a slide show at https://thedenbyclan.wordpress.com/slide-shows/september-kangaroo/

Thanks for your prayers and support.