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 and Ashley Denby Update: 4/5/2011

 

Napping in the car

Lillian Grace is 239 days (4 days shy of 8 months) old today; her adjusted age is 4 months, 3 days. She’s been home from the hospital for 3 and 1/2 months!

 

Lillian’s Official Stats as of Tuesday, 4/5:

• Height: 64.5 cm (4.8 cm gain) 25.39 in
• Weight: 6365 gm (1035 gm gain) 14 lb 5 oz
• Head Circumference: 42 cm (2.6 cm gain) 16.5 in

Lillian had visits at Texas Children’s today with her neurologist and her pulmonologist. The results: she is breathtakingly normal: right where she should be at 4 months adjusted age. For a baby born at 23 weeks gestational age, this is very good news. Dr West, her pulmonologist, after listening to her lungs said that she sounds like the million dollar baby that she is. She’ll follow up with the neurologist in 8 months and with her pulmonologist if needed.

 

Eating solid food for the first time

Yesterday, Lillian had solid food — rice cereal — for the first time. She loved it, though she left a lot of it on her face. She’ll be eating some twice a day, and next week she’ll get to try oatmeal. Ashley has started her on one bottle of formula a day. Ashley won’t be able to breast-feed Lillian for about a week after her surgery, due to the medicines she will be taking. If no further treatment for her cancer is needed, then she should be able to go back to breast-feeding then (she has about a week’s supply of breast-milk stored in the freezer). If Ashley needs further treatment, then Lillian will switch to formula at that point. We are expecting that Lillian isn’t going to be happy about having to feed from bottles; but we know that when she’s hungry enough, she will — reluctantly.

 

 

I'll be crawling soon... watch out!

Ashley’s surgery is tomorrow and we’ll send out an update afterward.

 

Thanks for your prayers and support!

 

Ashley and Lillian Grace Denby Update: 3/30/2010

In the great outdoors...

Lillian Grace continues to grow and flourish: she now weighs just over 14 pounds, loves to smile and laugh and sticks her tongue out at all and sundry. Ashley and Josh take her outside regularly; she loves to ride in her stroller, particularly if the path is bumpy. When you put her down on her back, she’ll do one of two things: either try to eat her feet or roll over and try to crawl. Sometimes she sleeps through the night and sometimes she doesn’t; however, her appetite never flags.

Resting from my labors....

Ashley met her surgeon and plastic surgeon today. She will have surgery Wednesday, April 6th, to remove a large area around and underneath the site of her melanoma; the tissue removed will be biopsied at the margins to ensure that they have removed all the cancer (if not, she’ll have to go back to have more tissue removed); then the plastic surgeon will take skin from her thigh and make a skin graft to cover the wound. Her surgeon also discovered another mole on her scalp that he will remove at the same time and have biopsied. The surgeon will also conduct a couple of tests using isotopes and dyes to help determine whether the cancer has spread to her lymph nodes: he’ll remove any suspicious areas and have them biopsied: the results take about a week; if they are positive for cancer, she’ll face further surgery and additional therapies.

Her surgeon (Dr Albo of the Baylor Clinic) expects that she will take about 7 to 10 days to recover from this first surgery (she’ll have some pain and will have to protect the healing wound). She may be able to come home the day of the surgery, though she may also have to spend a night in the hospital.

Thanks for your prayers and support.

Lillian Grace Denby Update: 2/26/2011

Laughing at my dad

Lillian Grace is 201 days (6 months and just over 2 weeks) old today; her adjusted age, calculated from her due date is 2 months, 24 days. She’s been home from the hospital for 2 months.

Life at home when you are 6 and a half months old is really pretty sweet: you get to eat just about whenever you want to, and the food is customized just for you; you can sleep when you want to and keep everyone else awake when you don’t; when you get bored with your swing, you can  borrow someone’s knee for a little bit of bouncing. But life isn’t all rosy: you keep getting dragged off for various shots (she had her third dose of Synagis this week) which hurt like the dickens; or you find that your teeth are working their way up through your gums and that hurts, too. Still, it’s springtime in Houston, so you can escape the confines of your apartment and go out walking with your mom or dad — when you’ve spent most of your first six months inside, that’s a pretty exciting thing to do — so all in all, if you are Lillian Grace Denby, you are a pretty happy baby.

Talking to mom

Lillian’s great accomplishment of the past week is that she’s weaned herself off of oxygen, and is breathing only room air. She’s still hooked to the pulse oximeter at night, and for an hour or two during the day, but her oxygen saturation on room air is excellent. This means that doing things (like going for a walk) is much easier: no portable tanks to hook up and lug around. She’ll go back to her pulmonologist for a check-up in April, but she appears to have made excellent progress in her breathing. She continues to eat well and to gain weight: she weighs 12 lbs, 9 oz.

 

Bouncing

Lillian is very active when she’s awake: she can flip herself from her back to her stomach (though she can’t flip back) and skooches herself around the floor or the crib. She has a bouncer that she loves to play in (we put up a video of her bouncing here); she loves to move and to grab anything in reach. When her teeth hurt, she sucks on her wrist or her fingers or an icy teething ring. She takes a few naps during the day, but at night now sleeps for one or two four to six-hour stretches.

Thanks for your prayers and support!

Lillian Grace Denby Update: 2/14/2011

Happy Valentine's Day!

Lillian Grace is 189 days old today; her adjusted age is 10 weeks. She’s been home from the hospital for almost 8 weeks!

Lillian’s Official Stats as of Friday, 2/11:

• Height: 59.7 cm (2.6 cm gain) 23.5 in
• Weight: 5330 gm (325 gm gain) 11 lb 12 oz
• Head Circumference: 39.4 cm (3.8 cm gain) 15.5 in

Lillian Grace visited Dr Rowland, her pediatrician, for her six month check-up on Friday, 2/11, accompanied by her mom and dad. Dr Rowland thinks she is doing very well. She holds her head up on her own and sits for extended periods (supported by a friendly hand), laughs and smiles, and coos, gurgles and grunts. She breast-feeds almost exclusively and is a serious, dedicated and noisy eater. Developmentally, she is right where she should be (perhaps a bit ahead in some areas) given her adjusted age (which is calculated from her due date of December 2nd). Lillian is currently waiting on an appointment with developmental pediatricians who specialize in follow-up assessments of neo-natal infants.

Of course, when you are a baby and go to the doctor for your regular visit, you are likely to get a bunch of shots: Lillian got several, including her first flu shot. She did not enjoy the experience; and she did not much enjoy the rest of Friday or Saturday. As often happens after a flu shot, she ran a slight fever, seemed a bit congested and was pretty lethargic. Just to be safe, Ashley and Josh took her back to the doctor on Saturday morning: her lungs sounded normal and, after a careful examination, the doctor thought that she was just reacting to the flu shot. By Sunday morning, Lillian felt much better, and was back to her smiling, feisty self.

My Eyes

For the past week or two, Lillian has been sucking on her own hands and arms, on her dad’s hands and arms when she can get to them, and has been drooling up a storm. Dr Rowland confirmed what we suspected: Lillian has begun teething and in the next month or so we can expect a tooth or two to erupt. Ashley is both excited and, as Lillian’s food source, just a bit apprehensive: the girl has a powerful jaw. Dr Rowland also thinks it likely that Lillian’s eye color will continue to be about what it is now: a dark blue with hints of gray and gold.

Lillian’s breathing continues to improve, we think; her pulse oximeter was out of commission for part of last week, so Ashley and Josh limited her to three-hour stretches on room air; after getting it going again (Apria walked Ashley through the procedures over the phone), they’ve increased her time on room air gradually: yesterday she breathed room air for 12 hours with no desaturations. She will see her pulmonologist, Dr West, on April 5th to determine whether she is ready to be off oxygen full-time.

Helping mom get the mail

One of the advantages of being off oxygen is that you don’t have to be tethered via cannula and tubes to an oxygen tank: that means that when the weather turns glorious, as it did Saturday, your mom can just put you in her K’Tan sling and take you out to check the mail or to sit on the balcony or to take a walk… kind of like Lillian’s just a baby!

Some of Lillian’s nurses and friends from Memorial Hermann Southwest NICU recently commented on the blog and sent greetings her way — she misses them (as does her family) and we promise to drop by soon to visit. No small part of the miracle that is Lillian is due to the superb care she received in her four and a half months’ residence there; it takes special people to handle the needs of premature babies and their families, and the people of Memorial Hermann Southwest NICU — doctors, nurses, techs, clerks, cleaning staff — are some of the best.

Thanks for your prayers and support!

Lillian Grace Denby Update: 2/6/2011

Full & happy

Lillian Grace is 181 days old today, and will be 26 weeks old tomorrow. Her adjusted age (calculated from her due date) is 2 months, 4 days. On Wednesday, February 9th, she’ll be six months old!

Cold weather delights Lillian Grace: bundled up and out in her stroller, she laughs when the cold wind blows on her nose; she thoroughly approves of shutting down the city of Houston for ice storms: that means she has both her mom and her dad home all day. Sometimes she is solemn and serious, regarding her surroundings and companions with a careful studiousness; but then, without warning, perhaps at the shake of a rattle or some silly utterance by an otherwise sober adult, she’ll laugh out loud or grace you with a glorious smile.

Me & Mom in the x-ray room

Lillian endured her VCUG test with grace and charm. The techs from the radiology team at Memorial Hermann Children’s Hospital were efficient and cheerful, even when a diaper-less Lillian did what diaper-less babies often do. The test showed no problems with Lillian’s bladder and urinary tract; it’s one in a series of tests she’ll have over the next few months as her kidney specialists determine how best (and when) to deal with her very small left kidney. After the VCUG test, we had her blood pressure checked to assess whether her blood pressure medicine is working; Lillian was pretty feisty when we went in, and the first reading was high, so we hung around until she was ready to eat; while she was gulping down lunch and distracted, the nurse got several good readings and Lillian’s blood pressure was just where we wanted it to be.

Me & My Dad

Lillian’s East Texas grandparents, Peggy and Keith, and her aunts Cari and Sylvia came down last weekend for a good visit and Lillian loved seeing them. All of the East Texans marveled at how big she’s gotten in just 6 months: this girl, who could have fit comfortably in one hand when she was born, is now a solid chunk of kid who requires two hands and a capacious lap. (Lillian’s kidney specialist and her nurse several times referred to Lillian as “petite”; at 11 and a half pounds, we say instead “big girl”).

 

Plumb tuckered out

Lillian’s breathing continues to improve: she’s still spending most of the day on oxygen at 1/8th liter flow, but for two to four hours a day she is breathing room air only, monitored by a pulse oximeter. Ashley now uses a clear thin adhesive film to hold Lillian’s nasal cannula in place; it’s easier and gentler to remove, so when she’s on room air, Ashley removes the cannula completely, and for a few hours a day we see Lillian without tubes, wires or tape — still a new and exciting experience for us. She’s got another visit with her pediatrician this week, and will see a neurologist in April, and she is waiting on her first appointment with developmental pediatricians who specialize in follow-up care for premature infants.

Nearly six months on, Lillian is a delight, a joy, a wonder… and cranky and fussy and exhausting: everything a baby should be.

Thanks for your continuing prayers and support!

Lillian Grace Denby Update: 1/18/2011

Pretty in pink

Lillian Grace is 162 days old today; her adjusted age is 6 weeks. She’s been home from the hospital for 4 weeks!

Lillian’s Official Stats (measured at Texas Children’s):

• Height: 57.1 cm (no gain) 22.5 in
• Weight: 5005 gm (271 gm gain) 11 lb
• Head Circumference: 35.6 cm (no gain) 14.0 in

Lillian went to Texas Children’s Clinical Care Center to meet her pulmonologist, Dr Barbara West, and to test her oxygen needs and lung development. She wasn’t allowed to eat after 7:00 am, so by the time she got into the pulmonology diagnostic center and got hooked up to the monitors, she was decidedly not happy. However, she got to eat at about 10:15 (much to the relief of her mom and everyone else on the 9th floor). After eating, she went to sleep and slept for most of the rest of the 4 hours of the test.

As a result of the test, Lillian’s oxygen flow level is now set at 1/8 liter (down from 1/4 liter). She’ll get a pulse oximeter in place of her apnea monitor, and she’ll start spending part of the day on room air. Her mom and dad will monitor her blood oxygen level using the pulse oximeter; if it remains above 93%, she’ll be able to stay on room air during the day; for now, she’ll continue on supplemental oxygen overnight. Over the next month or so, Ashley and Josh will work on slowly increasing Lillian’s time on room air. She’ll still have the cannula on for now, even on room air — removing the tape that holds the cannula in place too often would be hard on Lillian’s skin.

Lillian’s days at home have been blissfully uneventful (that bliss is tempered a bit by Lillian’s night-owl tendencies). Every now and then she bestows a radiant smile on one of her admirers, but otherwise she concentrates on eating, squirming and sleeping. She loves her nightly bath, and listens intently when someone sings to her or reads her a story. Her mom puts Lillian in her K’tan baby carrier while doing chores around the apartment: Lillian appears to be very interested in pie and cake baking. For forays outside the apartment (not many yet), the stroller is the carrier of choice: you can put monitors and oxygen tanks in the stroller; with sling type carriers you have to hang those off your shoulders when going out.

Thank you for your prayers and support!

Lillian Grace Denby Update: 1/7/2010

In my bouncy thing

Lillian Grace is 151 days old today; her adjusted age is 5 weeks and she’ll be 5 months old on Sunday! She’s been home from the hospital for 2 and 1/2 weeks.

Lillian’s Unofficial Stats (measured at home):

• Height: 57.1 cm (1.2 cm gain) 22.5 in
• Weight: 4734 gm (182 gm gain) 10 lb 13.5 oz (official: weighed at doc’s)
• Head Circumference: 35.6 cm (no gain) 14.0 in

Here’s what babies who are 5 weeks old like to do: eat; roll over; eat; hold their heads up; eat; babble and grunt; eat; pass gas; eat; sleep; eat; fuss; eat; stare at their parents; and, of course, they like to eat. Even premature babies who are now actually almost 5 months old but only 5 weeks past their due dates like to do these things; and these babies, who spent such a very long time in isolettes and hospitals, love to be held and sung to and talked to most of all — even more than they like to eat.

Sometimes I have to yell to get people moving

Lillian loves being at home. She can always find a mom or a dad (and once in a while, a grandparent) to hold her, sing to her, feed her, tell her a story — or just chat with her when she’s in the mood at 2:00 am. She’s got a floor gym with dangly things to touch and kick; a swing in which she can float through the air; a bouncy thing to rock and vibrate her to sleep. Three cats patrol the apartment, not sure yet what to make of the baby newcomer, though they suspect that Lillian’s tubes and wires are there just for their amusement.

 

On my mom

On Friday, Lillian and her mom made a quick trip to the doctor. Lillian appeared to be a bit congested and had what sounded like rattling in her chest. Happily, the doctor found nothing in her chest to worry about; the congestion is likely a result of irritation from her nasal cannula and of the drying effect of un-humidified oxygen. He suggested putting a drop or two of saline solution in her nostrils to help with dryness.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/29/2010

Me with Grandma Peggy and Grandpa Keith

Lillian Grace is 142 days old today; she reached 20 weeks on Monday.

Lillian’s Unofficial Stats (measured at home):

• Height: 55.9 cm (3.19 cm gain) 22 in
• Weight: 4734 gm (368 gm gain) 10 lb 7 oz
• Head Circumference: 35.6 cm (.17 cm gain) 14.0 in

Lillian is enjoying being home from the hospital: she’s got willing hands and laps whenever she wants them. She got her 50 foot oxygen tube extension the other day, so it’s very easy now for her to move around her apartment. She likes sitting out with her mom and dad and various grandparents, and the occasional aunt, uncle, cousin or friend (admitted only after swearing to being in good health, being checked for fever and after most have donned masks). On the day after Christmas, Grandma Peggy and Grandpa Keith drove down from Huntington (despite plumbing problems at home) and got to spend a good long time with Lillian.

With mom & my Finnish relatives

On Tuesday, her great-uncle Paul, great-aunt Nina and cousin Samuli visited with her. They are in town from Finland, so this was their first opportunity to see her up close and personal. Lillian talked with them for a bit, then decided to nap. Lillian was their third all-star siting of the day; they had breakfast at the Buffalo Grille and had the table next to Hunter Pence and Chris Johnson of the Astros; both were very gracious to the three visiting Finns (who may make up the entirety of the Astros’ Finnish fan base).

I have to be stern with my folks sometimes

Lillian is now sleeping regularly, so mom and grandmom are as well. She likes her car seat and stroller for napping, and enjoys lying on one of her mats on the floor and kicking with her legs and waving her arms about. She eats heartily and has a belch that would make a sailor proud. She occasionally pulls her nasal cannula out of her nose (one of her oldest tricks) but they are easy to replace and no one gets very excited.

Me & Grandma Nancy

Ashley is working on setting up January appointments with various specialists for Lillian and is finding navigating the medical bureaucracy to be challenging — and frustrating. Grandma Nancy is staying over at Lillian’s to help out (though her dogs miss her terribly). Josh is working hard over the holidays, but, somehow, when he gets home Lillian always ends up in his lap or bouncing on his knee. It’s peaceful and calm at chez Denby and Lillian is (mostly) a happy and contented baby.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/22/2010

Blue jeans! Yee-haw!

Lillian Grace is 135 days old today. Her adjusted age (calculated from her due date) is 20 days.

Lillian’s Official Stats (from first visit to her pediatrician):

• Height: 52.71 cm (.21 cm gain) 20.75 in
• Weight: 4366 gm (244 gm gain) 9 lb 10 oz
• Head Circumference: 35.43 cm (.43 cm gain) 13.95 in

Lillian’s mom and grand-mom got Lillian up this morning, dressed her in blue jeans, hooked her up to her portable oxygen tank, took her downstairs, put her and her car seat into the car and drove her off to her first visit to a doctor as an out-patient. It’s a very short drive from their apartment (Lillian, like many babies, enjoys riding in the car) .

 

Me, bottle, Boppy, Dad: Life is good

Shortly after arriving, Lillian and her party sat in the preemie waiting area (set apart so delicate lungs don’t get exposed to all the indelicate viruses, bugs and germs other waiting young patients might have brought with them) and soon Lillian met her pediatrician, Dr Lisa Rowland of Houston Pediatric Associates. Dr Rowland gave her a thorough examination, and reviewed the lengthy synopsis of her NICU stay. Dr Rowland said that, if it were not for the oxygen, you’d never know from looking at her that she was a preemie. Lillian appears to be where she should be developmentally, but will see a developmental specialist and neurologist next month for a more in-depth assessment (she’ll be visiting these two specialists a number of times over the next couple of years: if there are developmental or neurological issues, they’d like to catch them early on). Lillian will see Dr Rowland again in a couple of months. Lillian once more was suffering from constipation, so, at the doctor’s suggestion, Lillian received some glycerine suppositories in the afternoon; this treatment quickly produced the desired result, and Lillian’s afternoon and evening were spent in greater comfort than her morning.

 

Octopussed!

Josh got off work early, and spent the extra time with Lillian; Lillian slept for a couple of lengthy stretches and various adult types took advantage to catch up on their own Zs. In the evening Ashley’s cousin Chris and his wife Jen (they’ve been married a month now, so are no longer newly weds) came by (they’re Lillian’s god-parents-to-be) and dropped off a number of little things, most notably a blue-octopus visor that soon graced a small one’s head.

Thanks for your prayers and support!