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 on the Day after Christmas

 

Playing with my Dad

Lillian Grace is 139 days old today; she enjoyed her first Christmas very much. Lillian is getting just the amount of sleep she needs; no one else is!

 

Grandma and Grandpa Denby are coming this afternoon to visit, and Lillian is enjoying having her Dad at home.

Thanks for your prayers and support!

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: 12/23/2010

 

I like taking the car for a spin

Lillian Grace is 136 days old today and her adjusted age is 3 weeks.

Lillian is settling in at home … mostly. When she’s sleeping, she’s sleeping for longer periods and she’s eating very well, but she is awake a lot and fussy for considerable lengths of time; she’s still having periods of constipation and gas, and finds these uncomfortable.

Lillian went out for a ride in the car with mom and grand-mom; she loves riding in the car (what baby doesn’t?). Lillian and mom stayed in the car while grand-mom ran into a couple of stores. She stopped by so her visiting Finnish relatives could come look in the car window and see her reposing regally in her infant seat. They agreed that the reports they had read of her extraordinary beauty and charm were simply objective fact and not exaggerated in the least.

Josh is working hard at his two jobs as Christmas nears, but will have some time soon to enjoy his daughter. Neither parent is really caught up on sleep; of course this is the universal complaint of parents of newborns; Ashley and Josh find it comforting now simply to have the same complaints and joys most other new parents do: they are home, after all, and Lillian is, too.

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!

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: 12/20/2010 Special Homecoming Edition

Leaving the NICU

At 7:00 am, as Lillian woke to her 133rd day of life, a tech from Pediatrix, our NICU doctors’ medical group, came and gave Lillian a hearing re-test (her left ear had failed the first one). She passed in both ears; the tech, remembering Lillian from her first test a couple of months ago, marveled at how big she’s grown. Then, as Ashley and Josh finished their breakfast after a night of rooming-in with Lillian, Bev, the NICU’s charge nurse, asked them if they’d like to take Lillian home in the afternoon. They said: “Yes.”

Over the next several hours, the NICU staff scurried about taking care of a variety of last-minute details — showing Ashley how to fortify Lillian’s milk and administer her vitamins, packing up all of Lillian’s accumulated possessions from four and a half months in the NICU, and writing reports and orders for Ashley and Josh to take to Lillian’s pediatrician and specialists. Lillian’s uncle Richard went over to Ashley and Josh’s (and now Lillian’s, too) apartment and waited for the oxygen man to deliver her oxygen supply. He brought and set up a large oxygen tank on a stand, and a supply of the small portable tanks for the times when Lillian needs to go out. Finally, about 3 o’clock, all was ready, and mom hooked Lillian to her portable apnea monitor and oxygen tank, put her in her infant car seat, loaded all her stuff on a NICU cart, and, with many tears and hugs, went downstairs, gave the car seat to dad, who loaded it (with baby) in the car, and mom, dad and baby drove home.

Anne, Nancy & Lillian

Once home, Lillian sat with her grandma Nancy, gazing at her new surroundings with some interest (and listening to the plaintive cries of the resident cats, who wonder why they are not allowed in the room to study the new arrival), while her mom and dad unpacked and put away her things. Soon the voracious eater wanted milk, and Ashley prepared her a bottle of breast milk (for the time being, Lillian will take about half her meals from the bottle, so calorie fortifications can be mixed with breast milk to make sure she keeps gaining weight) and grandma Nancy happily fed her. Ashley heard a knock at the back door and opened it to find Lillian’s great-grandmother Anne standing there. She told Ashley she wasn’t actually there and hadn’t really come to see the baby, but (according to reliable sources), she was indeed there and somehow managed to see Lillian despite her stated intentions.

Home in my mom's arms

So, Lillian ate and fussed and played (just as if she was in the NICU) and her mom rocked her to sleep and put her down in her portable rocking cradle. Josh had to go off to work, but grandma Nancy is staying over for a few days to help out; there is some hope that one or two among mom and dad and grandma will get some sleep, but certain experts think this is mere wishful thinking.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/19/2010

Talking to Grandma Nancy

Lillian Grace is 132 days old today.

Lillian spent her day getting ready for her home-coming this Tuesday. She began her morning with her first Synagis shot to protect her from RSV; she’ll get one monthly during the rest of this RSV season and all of next (RSV season runs October through April or May). The shots aren’t cheap (approx $900 per shot), but (fortunately) it’s covered by insurance (it’s easy to bash insurance companies — some of us have done more than our share — but Ashley and Josh have gotten very good support from their carrier, for which we are all grateful).

She rests from her labours...

Later in the morning, she took her car seat test: mom strapped her in her car seat in the NICU, and she stayed in it for an hour and a half. A baby passes the test if she has no bradycardias (heart rate drops below 100 bpm), no apneas (stoppage of breathing) and no oxygen de-sats (blood oxygen falls below 80%). Lillian passed: it’s another going-home goal met.

In the afternoon, her neonatologist and her nurse practitioner examined her: all is well. Dr Friedman thinks that her breathing progress is very good now, and predicts that she won’t have to be on supplemental oxygen for much longer – as little as 1 to 3 months, he hopes. Lillian’s great-grandmother Joan came to visit, and got to hold and feed her for a bit. Grandma Peggy and Grandpa Keith keep Lillian’s great-grandmother Denby in Beaumont up-to-date on Lillian’s doings; we hope that sometime in the not-too-distant future Lillian will be well enough to take a trip to Beaumont herself to see her.

Last Stop in the NICU

About 8 o’clock this evening, Lillian and her mom and dad moved into the Parent Inn for their rooming-in, one of the last things you do before going home from the NICU. The room is similar to a motel room, with bed and chairs for mom and dad, oxygen connections on the wall for baby and en-suite bathroom and shower. Lillian is hooked up to the apnea monitor she’ll wear at home; mom and dad get to practice being on their own with their baby — but the NICU staff are just a step or two away to answer questions or help if needed. They may spend Monday night as well, since Lillian isn’t going home until Tuesday, and the room is not reserved for anyone else.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/18/2010

My dad is one comfy guy

Lillian Grace is 131 days old today.

We’ve been going back and forth on when, exactly, Lillian will come home: as of today, she’ll be released on Tuesday, 12/21, between 1 and 4 pm. Since Ashley and Josh are rooming-in (i.e., spending the night in a special room in the hospital with Lillian) Sunday night, there was some thought of releasing Lillian on Monday, but as they worked on scheduling all the things that remain to be done, everyone ended up agreeing that Tuesday was a better day.

Asleep -- for now

Lillian got to hang out with her mom and Grandma Nancy in the morning (Ashley pays more attention to advice on nursing from her mom than any that her husband or father occasionally volunteer; we’re not sure why). She’s eating well, and gained more weight last night — she’s now 9 lbs, 4.6 ozs. In preparation for going home, her nutritionist is raising her calorie supplement: she’ll not be getting as many bottles at home (since her personal milk factory will always be there); but she’ll still need one or two, as the various supplements and fortifications will continue to be mixed with stored breast milk for delivery by bottle to Lillian. Josh and Ashley spent the afternoon just hanging out with Lillian, feeding her and playing with her and providing warm and cushy sleeping platforms for her naps. They went home in the evening for the last Saturday-evening-without-baby-at-home that they’ll spend for some time to come.

Thank you for your prayers and support!

Lillian Grace Denby Update: 12/17/2010

Mom & Dad are taking me home soon

Lillian Grace is 130 days old today.

Lillian’s nasal gavage came out a couple of days ago, and she switched to on-demand (that is, on her demand) feeding. Over the next two days, as she adjusted to this new concept she lost 23 grams. But yesterday, she realized that people actually would pay attention when she announced that she was hungry, and she fed voraciously. She added 73 grams (2.57 ounces) and now weighs 9 pounds, 4.3 ounces. Her breathing remains stable at her new lower flow rate (.25 liters); her respiratory therapist decided that the tape that holds her nasal cannula in place was just too boring, so she cut today’s strips into heart shapes. Lillian’s release next week appears more and more likely; Ashley and Josh are scheduled to room in on Sunday night: Lillian may come home Monday.

Eating wears me out

The local rep for Apria Healthcare delivered Lillian’s portable oxygen tank and apnea monitor to Ashley at the hospital this morning and trained her on both pieces of equipment. The oxygen tank, which comes with its own carrying case, is what Lillian will use for oxygen support when away from home (going to the doctor’s office, for example). Each tank holds about 4 hours of oxygen at Lillian’s current flow. At home, she’ll use an oxygen concentrator (Apria will deliver this to Ashley and Josh’s apartment and train them in its use this weekend). The apnea monitor will measure Lillian’s heart rate and detect any stoppage in breathing (apnea) that lasts longer than 20 seconds; if her heart rate is outside of preset limits (220 beats on the upper end and 80 on the lower) or if she has an apnea, a very loud, piercing alarm sounds. (She can also set it off by wiggling, pulling, passing gas or with a number of other tricks — anything that breaks contact between the electrodes and the monitor). It comes with its own carrying case, too, and has a battery backup for traveling and for power outages. It records all events, and Apria will send a rep once a month to download data; the data will be sent to their data center, interpreted and forwarded to Lillian’s pediatrician. So, even though Lillian will (knock on wood) soon be out of the hospital, she will still be hooked up to tubes and wires for a while yet.

Thanks for your prayers and support!