Lillian Grace Denby Update 1/24/2011

 

Playing on the floor

Lillian Grace is 168 days  — 24 weeks — old today. Her adjusted age is 7 and 1/2 weeks, and she has been home from the hospital for 5 weeks.

Lillian went this morning to the Care Group to receive her second Synagis shot to help protect against RSV (Respiratory syncytial virus). We went to one of the patient rooms where the nurse weighed and measured Lillian so that she could prepare the correct dose (Lillian weighed 11 lbs, 3 oz this morning and was 22.64 inches long). As we waited while the nurse prepared the shot, we heard some very loud baby screams from the next room. When the nurse returned, Ashley remarked that the baby next door sounded unhappy; the nurse said, “Oh, it’s unhappy babies; triplets, in fact.”  Then she gave Lillian her shot, and pretty quickly there were four unhappy babies in the office. We stayed after the shot for 2o minutes to make sure that Lillian had no adverse reactions to the shot, then headed off for her next doctor’s appointment.

About a week before Lillian left the NICU, she received an ultrasound of her kidneys as a result of concerns about high blood pressure. The radiologist noted that one of her kidneys was smaller than the other;  we did not get a lot of details then, but the hospital scheduled a follow-up visit with the pediatric nephrologists at UT Physicians Pediatrics. That visit happened today.  We learned that the difference in size between Lillian’s left and right kidneys is pretty significant: her right kidney is larger than expected (about 7cm) and her left kidney is very small (about 2cm). It’s very likely that her left kidney has minimal function and that the difference in size is responsible for her high blood pressure. She’s going to have some more tests, beginning with a VCUG test next week to check the functioning of her bladder and lower urinary tract, and another ultra sound in three weeks. In the meantime, she’ll take medicine to help control her blood pressure; it appears likely that at some point she will have the smaller kidney removed. The good news is that so far her right kidney appears to have normal function — and you can function normally with just one good kidney.

 

Uh, mom, could you get this old geezer to stop buggin' me?

Lillian has decided that she is no longer interested in feeding from the bottle: she insists on getting milk directly from the source. Ashley and Josh consulted with Lillian’s pediatrician (Lillian’s bottles were supplemented with formula to enhance weight gain); Dr Rowland advised them to weigh Lillian daily and that as long as she kept gaining weight, going all breast-feeding was ok. Both baby and mama are happy about this: Lillian finds breast-feeding both tastier and more fun, and Ashley doesn’t have to pump very much or warm bottles in the middle of the night. Two important side benefits: without the formula Lillian’s diapers are much less stinky and she is much less gassy and so more comfortable.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/07/2010

Home? Christmas? Tell me more!

Lillian Grace is 120 days old today.

Christmas is coming, and it looks like Lillian Grace might be home to welcome Santa! Her MRI yesterday looked good, and showed nothing that concerned her doctors; she’s had two of her immunization shots today and gets the third tonight. If she doesn’t have any adverse reactions in the next 24 hours, the respiratory team will shift her to low-flow nasal cannula at a flow of 1 liter per minute and 100% oxygen mixture (with low flow, the oxygen comes out at the nose at 100%, then mixes with air as it goes to the lungs; by the time it gets there it’s at 30-35%). Assuming she does well on low-flow, they’ll gradually reduce the flow to .25 liters over the next two weeks — and then, God-willing and all else being well, she’ll be released from the NICU and come home.

We’re approaching this fabulous news with tempered optimism born of 4 months of hard-earned NICU experience: hope for the best, prepare for the worst is the maxim of many preemie families, and we try not to celebrate ahead of time. The home-before-Christmas time-line is the best case, but mid-January is an equally likely outcome.

 

Dear Santa: I've been very, very good...

The team is adjusting 8 lb 10.6 oz Lillian’s feeding pattern: up until now, she has been fed a fixed amount of milk every three hours. This pattern works well when feeding primarily with a pump through a feeding tube, because it doesn’t matter whether the baby is asleep or awake. Now that she is on all breast or bottle feedings, she is sometimes fast asleep when feeding time arrives. So, now, if she’s awake at three hours, she’ll get her current allotment of 75 mL of milk. If she’s asleep, they’ll wait another hour, and give her 100 mL. By the time she goes home, she’ll be (for the most part) in control, telling us when she’s hungry and only getting fed then. At that point, if the team thinks she needs more calories, they’ll provide it in supplemental fortification for bottle feedings.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/20/2010

Bright-Eyed...

Lillian Grace is 103 days old today.

This morning the NICU‘s Lantana Room, where Lillian resides, had a full complement of 4 babies: Lillian, of course, 3 months into her stay; one new arrival being treated by bili lights for jaundice; and one baby who’s been in the NICU for 3 days and another who’s been there for 6 weeks. However, the latter two were preparing to go home: each set of parents spent last night in one of the parent rooming-in rooms with their babies; it’s the last step you take before taking your baby home. By mid-day, they were gone, moms and dads happy, and a bit apprehensive — the NICU nurses make a great support team. One of the dads is a tattoo artist (his own body is his chief form of advertisement); the sight of him carrying a large pink diaper bag and walking around with that dazed new dad look pasted on his heavily tattooed face is one we will miss.

 

Lillian in Swing

Lillian started the morning off early: when Ashley came in Lillian had been awake for an hour, ready for breakfast, so Ashley fed her right away. Lillian dozed off, but wanted to be held; Ashley needed to go pick up Josh (who slept in this morning), so she called in a grandparental holder to come substitute. While Ashley was out, the NICU’s eye doctor came and checked Lillian’s eyes: they are progressing nicely; Lillian will get one more eye exam in two to three weeks, and, if all continues well, won’t need another one until she is a year old. After the exam, Lillian slept.

 

The Two Sleepers

When Ashley tried the noon breast-feeding, Lillian still wanted to sleep, so she received her noon feeding via the mechanical pump. She has yet to do three breast-feedings in one day; once she’s on nasal cannula full-time (mid next week, we hope) we’ll be able to be a bit more flexible with feeding times. Lillian continues to gain weight: she’s up to 7 lbs, 2.8 ozs, and is getting 62 mL of milk when feeding via mechanical pump. Nasal cannula time increased to 12 hours today, and she continues to tolerate it well. She’s awake quite a bit, particularly in the afternoon; when she’s awake, she expects that someone will hold her; fortunately, so far at least, willing arms have not been in short supply.

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: 11/17/2010

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: 11/09/2010

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: 11/4/2010

 

Curious About Everything

Lillian Grace is 87 days old today.

At 2:45 pm today, while Ashley was in the lactation room pumping, Lillian’s nurse and respiratory therapist came in: they announced that as soon as Ashley got back, Lillian would make her long-anticipated move from Level 3, Room 3 (the Daisy Room) to Level 2, Room 3 (the Lantana Room). They switched Lillian to the nasal cannula, since Ashley planned to kangaroo, and packed all of Lillian’s books, clothes, blankets and supplies on a cart, and disconnected her from various monitors; then we waited for Ashley. Lillian was awake, alert and looking around: she seemed especially suspicious about the packing of her things — she wanted to make sure that they did not go astray during the move. As soon as Ashley came back, the therapist unhooked Lillian’s oxygen lines from the room’s air supply and hooked them to an oxygen tank. Then, with mom’s help, they pushed Lillian’s crib (with Lillian inside) and C-PAP machine out the door, across the hall and into her spot by the window in the Lantana Room. Several of the staff attempted to sing Pomp and Circumstance in honor of her graduation: however, Sir Edward Elgar likely would not have recognized their version of his composition — we certainly didn’t. Once in the room, her nurse and therapist connected her to room air and her monitors, and gave her to mom for the afternoon kangaroo session: mom and baby were very happy.

 

In the Lantana Room

Level 2 rooms have space for three or four beds; each is staffed by one nurse; other staff make regular rounds and are available as needed — babies don’t go into Level 2 until they are stable and out of critical condition. When mom is kangarooing or feeding, the staff set up portable screens for privacy. The Level 2 rooms are quieter than the Level 3 rooms: alarms are mostly silent, but the monitors and other equipment are of the same kind as in Level 3. It’s a pretty good place for a nap.

Lillian gained another 4 ounces and weighs 5 lbs, 12.9 ozs. She’s getting 50 mL of milk every three hours; Ashley pumps two to three times that much each time she pumps, so is still producing more milk than Lillian can drink in a day — but Lillian is working hard on catching up!

We’ve added a movie — Moving Day — that shows Lillian alert and awake just before the move, and then follows her crib as Lillian takes her longest journey since the day she was born.

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!

Lillian Grace Denby Update: 10/14/2010

 

Lillian's hands

 

Lillian Grace is 66 days old.

She added another ounce and now weighs 3 lbs, 14 ozs. Her team is very pleased with her breathing progress; while she has had a couple of episodes in which her oxygen levels dropped steeply, she hasn’t had an apnea for a few days — a very good sign. She has yanked her C-PAP mask off a number of times, and has voiced her very clear displeasure when her nurse replaced it. This actually isn’t unusual behavior; though they need the support, babies often find the bulky C-PAP gear to be uncomfortable. Lori, one of the nurse practitioners, told Ashley yesterday that, when Lillian pulled her vent tubes out and went on the C-PAP, all of Lillian’s team thought she’d be back on the vent in a day or two: they’ve been very pleased with how well she has adapted to C-PAP. Lori counsels patience: the old saw “time heals many wounds” might have been coined by a NICU nurse.

But the high point of Ashley’s day (and, as best we can determine, of Lillian’s) came at noon today when Ashley, with the help of Sonya, the NICU’s lactation nurse, attempted Lillian’s first non-nutritive feeding (or, to put it a bit more crudely, but literally, Lillian’s first dry run at the breast).

First, Ashley did a thorough milk-pumping session until she had no milk left — the baby isn’t ready to swallow. She timed this so she finished right before Lillian’s noon feeding (Lillian gets her food from a mechanical pump that pushes the milk through a small tube (called a gavage) that runs through her mouth down to her stomach).

Next, Sonya helped Ashley figure out the best position for holding Lillian; the C-PAP mask complicates this — it’s big and bulky enough to get in the way. First, they tried the cradle hold — mom holding baby in her arms with baby lying across mom’s front — the classic nursing position. The C-PAP mask made this impractical, so they quickly switched to the Football hold (old-time Oiler fans would call it the Earl Campbell hold): mom holds baby’s head in the palm of her hand, and tucks baby’s torso and legs under her arm like she’s going to tuck in a football and break for the goal line — except there are no defensive linemen to worry about. This position worked well, as Earl himself would have been able to predict, had we asked him.

At first, Lillian was very fussy, and her oxygen levels dropped for a bit. Then, on the last try before Ashley and Sonya were going to give up, Lillian (as Ashley put it) “latched on” and wouldn’t let go. Lillian appeared to be very curious, looking around and exploring with her tongue and her oxygen level soon shot up to 100% (a sign that she was very happy). She didn’t suckle much, but it’s a bit early for that. The nurses started Lillian’s noon feed (part of the process is to associate breast with feeding time), and Lillian soon passed out, and ended up enjoying lunch very much.

Sonya and the nursing team were very pleased with this first session — Ashley and Lillian, they said, are both naturals at this. Tomorrow, Ashley’s mom will help and the plan is to do two sessions.

Josh got to hold Lillian this afternoon when he came after work: she’s old enough now that she can be out of bed several times during the day.

Thanks for your prayers and support!