Lillian Grace Denby Update:11/23/2010

Mysteries of the Universe: Solved

Lillian Grace is 106 days old today.

Today, Lillian’s neonatologist, nurse practitioner and respiratory team decided to take Lillian off C-PAP and put her on nasal cannula full-time. Her respiratory therapist made the switch just before 9:00 am this morning. The team raised her oxygen support (she’ll not have the pressure support of the C-PAP, so they’ll keep her oxygen support higher at first); they will watch her carefully: Lillian may get tired after a day or two; if the team thinks she’s too tired, they’ll put her back on C-PAP for a while. However, the respiratory team weaned her very gradually to get to where she is today, and they are cautiously optimistic. If she is able to do well on nasal cannula, it’s another big step toward getting our girl home by Christmas.

With C-PAP gone, Lillian’s nurses switched her feeding tube from an oral gavage (feeding tube inserted through the mouth, down the gullet and to the stomach) to a nasal gavage (feeding tube inserted through the nose, down the gullet and to the stomach). Whenever Ashley has breast or bottle fed Lillian, she’s had to remove the oral gavage, and then Lillian’s nurse has had to re-insert it after Lillian finished eating. The nasal gavage does not interfere with Lillian’s mouth, and does not have to be removed for oral feedings; that makes it easier to be more spontaneous with breast-feeding. The gavage will remain until Lillian is taking all her nutrition orally; most of the nurses prefer to use the gavage for administering some of the supplements — particularly iron — because they taste pretty bad (iron is the primary cause of stinky baby diapers — and of constipation).

I want to be alone now...

Today’s morning feeding went well: Lillian was very hungry (she’s still adding weight: she’s 7 lbs, 6.9 ozs today). She stayed up for a couple of hours, fussed some (several impressive belches and frequent and loud gaseous emissions), looked around a lot and let the other babies know that she is in command of the Lantana Room of the Memorial Hermann Southwest NICU. When her mom came back from pumping, Lillian indicated that she wanted something else to eat. Ashley made her a small bottle of breast milk; Lillian took two sips and promptly went to sleep. Babies could teach our politicians a thing or two about how to get what they want; babies have the added advantage of being easier on the eyes and ears than any politician living or dead.

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: 11/19/2010

 

Fussing

Lillian Grace is 102 days old today.

Lillian is an enthusiastic breast-feeder — when she is awake. Ashley added a third breast-feeding time at noon yesterday, but Lillian wanted to sleep, not eat. Today, Lillian wanted to sleep at the 9:00 am feeding; mom tried to wake her up, but she was passed out (there is a rumor that the NICU night shift may have the babies up dancing all night), so Ashley passed Lillian off to her grandfather and went and pumped. Lillian slept until shortly before noon, then woke up and took her lunch from the breast. In the NICU, they have Lillian on a regular schedule of feeding every three hours; once she’s home and fully breast-feeding, she’ll control the schedule and eat when she’s hungry and sleep when she’s sleepy.  Additionally, breast-feeding times must be co-ordinated with nasal cannula time (it’s too cumbersome to do when she’s on C-PAP); those times do not always coincide with when she’s hungry.

 

Asleep on Mom

Lillian has been breathing well on nasal cannula (currently 10 hours per day), and needs less oxygen support — 32 to 37%. While on C-PAP, her oxygen support has been as low as 21% — the same amount of oxygen in the air the rest of us breathe. Tomorrow, the respiratory team will increase cannula time to 12 hours. She continues to gain weight (she’s up to 7 lbs, 1.9 ozs), but again has some constipation (the iron supplement she receives gets the blame), so she’ll get a dose of glycerine this evening.

Ashley, Josh and the trusty breast pump went to Galveston in the evening for the wedding of cousin Chris Graves and Jennifer Fackler. (They were married on the beach with the rising moon on one side and the setting sun on the other). It was Ashley and Josh’s first night out since the baby was born ( I believe one or two Shiner Bocks were consumed — strictly for medicinal purposes), and they had a great time with family and friends, then drove back to Houston to be ready for Saturday morning breast-feedings.

Thanks for your prayers and support.

 

Lillian Grace Denby Update: 11/15/2010

 

Making Faces

Lillian Grace is 98 days — 14 weeks — old today.

Lillian’s Weekly Stats:

• Height: 47 cm (1.5 cm gain) 18.5 in
• Weight: 3078 gm (288 gm gain) 6 lb 12.6 oz
• Head Circumference: 30.2 cm (.5 cm gain) 11.7 in
• Milk Volume: 55 mL/3 hours (2 mL gain) 1.86 fl oz

When Ashley arrived at the hospital this morning, Lillian was awake and active — ready for action. Ashley changed her diaper and clothes, then Lillian made it clear that breakfast needed to happen immediately, even though scheduled feeding time wasn’t for thirty more minutes. Ashley said ok, and Lillian got to work. Anetha, today’s nurse, was on the other side of the room, but could still hear Lillian slurping away; she’s liking this breastfeeding thing. Tonight, Ashley begins Lillian’s second daily breast-feeding session, and will likely add one or two others by the end of the week.

Lillian spent eight hours in two four-hour sessions on nasal cannula yesterday, and both sessions went very well. Wednesday should see an increase to a total of twelve hours — Lillian clearly prefers the cannula to C-PAP for comfort, so we hope within a week or so that she can be on it full-time.

 

Dressed for Breakfast

Josh spent the day finishing the cleaning of the old house, and Ashley came and helped in the afternoon; they’ll be taking the unpacking a bit more slowly.

Grandma Nancy spent the day with Great-Grandma Joan at Methodist Hospital where Joan had knee surgery; Lillian sends “Get Well” greetings to her Great-Grannie Joan!

Thanks for your prayers and support!

Lillian Grace Denby: 11/14/2010

Finished eating

Lillian Grace is 97 days old.

A few days and Lillian is an old pro at breast-feeding: even though tired from yesterday’s move, Josh and Ashley were at the hospital Sunday morning in time for the 9:00 am feeding. Lillian, just bathed and wide awake, went right to work, and again took a full feeding. Lillian gained 2.2 ozs since yesterday (she now weighs 6 lbs 11 ozs), so the NICU team believes Lillian is getting sufficient nutrition. Tomorrow, Ashley will add a second breast-feeding session for Lillian at 9:00 pm.

Lillian’s respiratory team says that she’s doing very well with the process of weaning from C-PAP: last night, her oxygen support while on C-PAP varied between 25% and 28%, the lowest settings yet at which Lillian maintained her blood oxygen levels (we ordinary humans breathe air that is around 21% oxygen). She’s added two hours to her time on nasal cannula, so she’s doing two four-hour sessions per day. Her breast-feeding and bathing occurs during nasal cannula time: it’s much easier for parents and much more comfortable for Lillian.

Grandma Nancy & Lillian

Josh and Ashley worked in the afternoon on cleaning their old house and moving various odds and ends; Josh will finish up tomorrow morning and turn over the keys in the evening, and the move will be done — except for unpacking! Everyone misses Grandma and Grandpa Denby, who had to go back to Huntington. Next time they come down, Lillian wants them to come spend more time with her — this whole moving thing has been of no interest as far as she is concerned.

We’ve added a brief (and a bit grainy) video of Lillian waking up at noon today: Waking Up.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/13/2010

Josh & Lillian

Lillian Grace is 96 days old.

Ashley and Josh got up early and went to the NICU to try again for a 9:00 am breast-feed. Today, Lillian decided that this was ok (encouraged by dad and nurse) and completed a full feeding. Dr Haider, one of the neonatologists and Lori, today’s nurse practitioner, observed part of the breast-feeding session, and think that Lillian has taken a big step forward. Lori is pleased that Lillian continues to gain weight (6 lbs 8.8 ozs this morning) since that indicates that she’s getting the nutrition she needs from breast-feeding. Dr Haider says that she is acting like a newborn rather than a preemie. Infants who, like Lillian, have spent a long time on ventilator, C-PAP and feeding tube often develop aversions to any activities involving their mouths; Lillian, fortunately, appears enthusiastic about breast-feeding and smiles and gurgles and roots around with interest while feeding. Monday, Ashley will begin breast-feeding Lillian twice a day.

Sleepin'

Lillian continues to do well when on nasal cannula — six hours total in two sessions. The respiratory team will continue to increase cannula time gradually; they want to make as sure as they can that when they’ve weaned her from C-PAP she can breathe without getting tired with only cannula for support. Lillian’s time on C-PAP is also going well; she requires less oxygen support when using nasal prongs instead of a nasal mask, but she’s occasionally getting the mask to relieve irritation caused by the nasal prongs.

 

Lillian's Crib

After the morning feeding, Josh held Lillian while she gazed adoringly at him and then slept contentedly in his arms. But soon Josh had to go continue with the big move to their new place. Grandma Peggy was joined by Grandpa Keith, and Josh’s sister Cari and Sylvia returned, along with Grandma Nancy, Ashley’s brother Richard, and Ashley’s cousin Chris and his fiancée Jennifer (who tie the knot next week). With a fleet of SUVs, a long trailer masterfully maneuvered by Peggy and Chris and Jen’s Honda Fit (which had room for about two grocery sacks and a lunchbox), the intrepid team of movers accomplished the move in about five hours, then repaired to the NICU to gaze at Lillian, who remained blissfully unaware of all the excitement. Ashley and Josh have some cleaning to do tomorrow, and then the move will be done — except for the unpacking. At least Lillian’s room is ready!

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: 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!