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!

Grandma Nancy and Lillian: A Video

Nancy gets to feed Lillian for the first time. You can hear Lillian smacking and slurping even over the sound of the Vapotherm breathing support device, which makes the NICU sound like a spaceship in a cheesy 1950s sci-fi movie.

Lillian Grace Denby Update: 11/24/2010

Lillian Grace is 107 days old today.

I'm not so sure about that...

Lillian’s weight today is 7 lbs, 8.1 ozs: that’s 6 pounds more than she weighed when she was born on August 9th. She’ll be 39 weeks gestational age and exactly one week from her original due date tomorrow — a true day of thanksgiving for all of us!

Yesterday evening the respiratory team added a Vapotherm device to Lillian’s nasal cannula. This device provides a higher flow and warms and humidifies the oxygen to prevent Lillian’s nasal passages from getting too dry. Michelle, today’s nurse practitioner, decided to go back to an oral gavage (feeding tube) from the nasal gavage; there wasn’t enough room for nasal cannula and the gavage tube without irritating Lillian’s nose. She’s doing well so far since going off C-PAP, despite the fact that the Vapotherm malfunctioned at first and shot a bunch of water up poor Lillian’s nose — unpleasant for Lillian and scary for mom and dad.

Josh, Lillian & Ashley's Arm

Ashley and her mom Nancy spent the morning and early afternoon with Lillian, who did not sleep through either her 9:00 am or noon breast-feeding sessions — with her 9:00 pm breast-feeding and 3:00 pm bottle feeding, Lillian completed 4 of her 8 daily feedings orally for the first time today. She will likely get 5 oral feedings a day beginning tomorrow. Mom and Grandmom gave her a bath, and Nancy got a series of pictures of Lillian with her face bare of tubes — we’ve added a slide show of them called Moody.

Ashley and Josh went back to the NICU this evening to be with Lillian, and will be back in the morning to celebrate the holiday with her. No turkey, stuffing or cornbread for Lillian, however: just mama’s milk for dinner and iron supplement for dessert!

Thanks for your prayers and support and Happy Thanksgiving to all of Lillian’s friends!

Lillian Grace Denby Update: 11/22/2010

Lillian on the Scale

Lillian Grace is 105 days — 15 weeks — old today.

Lillian’s Weekly Stats:

• Height: 49.5 cm (2.5 cm gain) 19.5 in
• Weight: 3310 gm (232 gm gain) 7 lb 4.7 oz
• Head Circumference: 33 cm (2.8 cm gain) 13 in
• Milk Volume: 62 mL/3 hours (7 mL gain) 2.09 fl oz

On mom's shoulder

Lillian’s morning breast-feeding went very well: she slurped and smacked and wolfed her mama’s milk right down. During her morning feeding, she did manage to demonstrate why, even with all of her amazing growth, she still needs to be in the NICU: she concentrated so hard on eating that she neglected to breathe. She went limp, turned blue (she’s done this several times before). The solution is to stimulate her: blow on her, tickle her feet and stomach and so on; then, she picks right up where she left off. It’s a developmental thing, and common in preemies. She should outgrow this little quirk by the time she goes home (we hope just before Christmas). If not, she’ll go home with a monitor to help her folks watch for this; it’s a problem easily solved if caught immediately.

After breakfast, Lillian was awake, alert — and fussy — for an hour and a half. At one point, she made enough noise to wake up her new-born neighbor, Alejandro. The two of them serenaded the room for a while with a duet notable more for its volume than any subtler musical qualities. But, when you’ve got a baby who spent her first two months in silence, even a few minutes of caterwauling is oddly cheering. She finally settled in on mom’s shoulder and went to sleep — and slept through noon and three o’clock feeding times. Tomorrow, she will go on nasal cannula full-time; then, Ashley will be able to breast-feed Lillian whenever she is hungry. The night nurses added a 3:00 am bottle feed for Lillian this morning and she took the whole thing. She’s now scheduled for four breast or bottle feeds per day, but has only been awake for three of them thus far.

Grandma Nancy came for a visit in the afternoon (she’s been sick and hadn’t seen Lillian for a week), and got to hold Lillian while Ashley was off pumping. When Ashley came back, both grandmother and granddaughter were napping.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/21/2010

 

Post bottle

Lillian Grace is 104 days old today.

Lillian started her morning with a good breakfast straight from mom, then had lunch with dad, who fed her with a bottle of mom’s milk. After lunch, Lillian fell into a deep and satisfied sleep on Josh, who spent several hours holding her. Lillian slept through her 9:00 pm breastfeeding time; the night shift will try another bottle feeding at midnight. When Lillian completes the transition to all oral feeding, she will need at least a couple of bottle feedings a day, as she will require some supplements to mother’s milk for some time to come.

 

Winking at Mom

Lillian’s up to 12 hours per day on nasal cannula, and her oxygen support is between 25 and 33% — she’s making really good progress and is on track to be completely off C-PAP by mid-week. She gained some more weight and is now 7 lbs, 5.1 ozs.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/17/2010

Lost in thought

Lillian Grace is 100 days old — 38 weeks gestational age — today!

Presidents often define the success or failure of their terms in office by what they are able to accomplish in their first 100 days: they get taxes raised or get taxes lowered; they spend money like water or they turn off the spending spigot; they start wars or they end them; they please 40% of the people, tick off another 40%, and the rest don’t care. Lillian’s record for her first 100 days, in contrast, is much less ambiguous: she’s got a slew of concrete accomplishments, she hasn’t ticked anyone off, and the only people who don’t care are those who don’t follow this blog (granted, that may currently include most of the world’s population).

Lillian, 100 days old

Until Ashley added a 9:00 pm breast-feeding time to her schedule this week, she and Josh had not spent much time at the NICU at night; now they are meeting a number of night shift folks that they’d only talked to on the phone up until now, and they are getting involved in some of the night shift chores. The most fun is the nightly weigh-in — this produces the official daily weight that we’ve reported over the last three months. Last night, Ashley got to do the weighing; she came up with a weight for Lillian of 6 lbs, 15 ozs. The previous night’s weight had Lillian at 6 lbs, 10.5 ozs, so Ashley’s weigh-in had Lillian gaining 4.5 oz — that’s a lot. The nurses were skeptical, so they re-weighed and confirmed Ashley’s number. Then, tonight, Ashley and Josh weighed her again: she is now a seven (7) pound baby! This weight is just below the 50th percentile for girls of Lillian’s gestational age.

Lillian & her menagerie

Ashley and Josh were able to stop in at Chris Graves’ (one of Ashley’s cousins) and Jennifer Fackler’s rehearsal dinner tonight and celebrate with family and friends (and scarf down some pretty decent fajitas), then had to zip back down to Memorial Hermann Southwest to pass through some of the veggie fajita stuff (no meat for Ashley) and guacamole to Lillian — reconstituted as breast milk, of course. The wedding is Friday evening on the beach in Galveston, and Lillian’s neonatologist and nurse practitioner have prescribed that Ashley and Josh attend, together with their trusty portable breast pump.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/12/2010

Just Bathed

Lillian Grace is 95 days old.

Ashley got up early, dragged her mom along and went to the hospital all ready to try Lillian’s first 9:00 am breast-feeding. The only person Ashley did not consult about this was Lillian, who quickly let her mother know that she is not in any way, shape or form a morning person. Despite the fact that Ashley first changed Lillian’s diaper, exercised her arms and legs, stimulated her feet and that the respiratory team switched her from C-PAP to nasal cannula, Lillian responded only with a few annoyed grunts and some scowls: she took a few sips from the offered breast, and went right back to sleep. So, after a bit, Ashley handed the baby to Nancy, got Lillian’s nurse to hook up the mechanical pump to feed Lillian breakfast, and went off to the lactation room to pump. Ashley will try again tomorrow morning; it may take a bit for Lillian to get used to the idea that breast-feeding time is going to be at 9:00 am instead of 3:00 pm.

Two Grandmothers & Lillian

About 10:00 am, Josh arrived with his mom, Peggy. Ashley and Josh went to bathe Lillian, and the two grandmothers (Peggy and Nancy) sat out in the Family Waiting Room. They had only waited a couple of minutes when the NICU clerk came and told the two grandmothers that they could go back and watch Lillian’s bath (normally only two family members are allowed back at a time), so they (not surprisingly) did. Lillian enjoyed the bath (at least most of it) very much, and Ashley and Josh used the new tub they brought from home: the nursing staff is having them use as many of the things they will use at home as is practicable. The focus is increasingly on preparing for the day Lillian will come home, though that’s still a number of weeks away. After the bath, mom, grandmoms and nurse dressed Lillian in a pretty polka-dotted dress. We added a new slide show of the bath: More Bath Time.

Grandma Peggy & Lillian

After bath time, Ashley and Josh went off to sign the lease and get the keys to their new apartment. The two grandmothers were forced to stay back with Lillian. Grandma Peggy got to hold Lillian for the first time; she thinks Lillian is okay — well, better than okay, actually — and she is impressed by how much Lillian’s grown (she now weighs 6 lbs, 7.7 ozs).

Once Ashley and Josh got the keys to their new apartment, the two grandmothers reluctantly left Lillian in the NICU and went to help begin the move, along with Josh’s sister Cari and her friend Sylvia. They moved quite a bit of stuff, and will finish tomorrow.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/11/2010

Sitting Up

Lillian Grace is 94 days old today.

Yesterday’s successful first breast-feeding pleased Lillian’s NICU team very much. Lillian had another good session today, feeding for over 15 minutes with only a pause or two for burping. Beginning tomorrow, Ashley will change Lillian’s breast-feeding time to 9:00 am; on Monday, she’ll add another session at 9:00 pm (she’ll probably go home for dinner and come back). Then, assuming all goes well, she’ll add an additional breast-feeding every three days.

The respiratory team will shift her nasal cannula times to match the new breast-feeding times — today they increased these to three hours each from two hours. They’ll evaluate cannula progress every three days and increase by an hour if there are no problems. Yesterday, during the parts of the day that she is still on C-PAP, the respiratory team tried a small nasal mask (a flexible plastic cup that fits around the outside of the nose and creates a seal between mask and skin around the edges — in theory) instead of nasal prongs  because she fussed so much whenever they inserted the prongs; but she wiggles a lot and regularly broke the seal on the mask, and required more oxygen; today, they switched back to the nasal prongs, and her oxygen needs dropped.

Fed, Full, Happy

Weight gain remains an important metric for judging Lillian’s progress (she’s 6 lbs, 6.9 ozs today). If she doesn’t gain weight fast enough, they’ll add additional supplements to her mechanical pump feedings; she’s currently getting an iron supplement and suffering from its main side effect: constipation. So today she got another suppository, which worked very well, and let us observe iron’s other two side effects: poop that is green and exceptionally malodorous.

The weekend promises to be hectic: Ashley and Josh are moving to a new apartment near Stella Link and Braeswood; they’ve recruited a small army of friends and relatives to help, so we hope the move will go reasonably quickly. Ashley will have to be at the hospital much of the day for feeding and pumping, so Josh will be in command of the move and the two grandmothers will take over the setup of Lillian’s room — when they aren’t at the hospital holding her.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/10/2010

Looking Around

Lillian Grace is 93 days old today.

For the last several weeks, Ashley, helped by the NICU team, has been working with Lillian as she developed and co-ordinated her skills in breathing, sucking and swallowing. A pacifier was the first training tool, starting with a small, purple one and moving eventually to a larger green one that let her work all the muscles involved in sucking; then, Ashley and Lillian worked daily on “non-nutritive” feeding: sucking at a just-pumped breast, allowing Lillian to explore and taste and practice on the real thing without getting any milk; last week, Lillian had a first run at a taking a small amount of milk directly from the breast and swallowing it. Today, Lillian’s 3 o’clock feeding came entirely from the breast. She fed for about thirty minutes; a couple of times she got a bit greedy and took more milk than she could handle, but soon got back on track with mom’s help. She handled the balance between sucking and swallowing and breathing very well. She’ll continue to get one feeding per day by breast; if all goes well, she’ll increase to two breast-feedings per day on Monday. They’ll use Lillian’s weight (she weighed 6 lbs 4.6 oz this morning) as a guide to make sure Lillian is getting enough nutrition from breastfeeding.  No word yet on when she can have her first cheeseburger.

Green Bow

After feeding, Lillian remained awake and alert for a couple of hours. Her two periods per day on nasal cannula continue to go well (breast-feeding time is during cannula time); she’s also doing well on her new C-PAP, though her oxygen support was slightly higher today.  The respiration team changed from nasal prongs to a nasal mask on the C-PAP headgear — Ashley thinks the mask is more finicky than the prongs were; she’ll see how tomorrow goes. Of course, we hope sometime soon that Lillian will be off C-PAP altogether.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/26/2010

Ashley & Lillian

Lillian Grace is 78 days old.

Lillian was awake and alert several times today — especially around feeding time. Each time, she opened her eyes and looked around, appearing to stop and gaze at faces and fingers; every time her mom spoke Lillian’s gaze and attention seemed to go immediately to her. When Josh and Ashley were ready to go home at the end of the day, she woke up and looked at them as if to say “don’t go yet,” and so of course they didn’t.

Lillian had a busy day yesterday with the introduction of the cannula and with her eye exam, and overnight she received a blood transfusion and diuretic, but her mood today was (mostly) sunny and serene nonetheless, and she graciously allowed her mother to change her diaper and read to her: Goodnight Moon and The Hungry Caterpillar and Guess How Much I Love You? (In the latter book, a baby hare spreads his arms as wide as he can in answer to the title’s question; as soon as Ashley read that bit to her, Lillian spread her arms as wide as she could — coincidence? or genius?). She did fuss a bit when her food didn’t arrive at precisely the scheduled time: she does not approve of tardiness, but forgave the miscreants once the milk began to flow.

In the afternoon, rather than attend rounds, Ashley chose to kangaroo with Lillian. The respiratory team switched Lillian from C-PAP to nasal cannula for the kangaroo session; they originally planned to keep Lillian on the cannula for 20 minutes, but Lillian maintained her respiration and oxygen saturation so well that they left her on the cannula for just over an hour — wonderful for mom and baby: the cannula is much easier to manage than the C-PAP, and so mom and baby are more relaxed.

Lillian

Sonya, Ashley’s lactation nurse, asked her to start separating fore milk from hind milk when pumping. At each pumping, she’ll pump the first five minutes (the fore milk) into one bottle, then for the balance of each session, she’ll pump the remainder (the hind milk) into a second bottle. She’ll freeze the fore milk, and for the next several weeks, give Lillian only hind milk — it’s more nutrient and fat dense, and will help Lillian continue to gain weight quickly (she weighed 4 lbs, 11 ozs this morning).

We added a wonderful short video — The Eyes of Lillian Grace — in which she opens her baby blue eyes and looks at the camera; she hiccups throughout the video (it’s filmed during her breakfast time). Her mother can be heard remarking on the state of Lillian’s diaper; happily, my camera is not equipped to record the odoriferous evidence that precipitated this remark.

Thanks for your prayers and support!