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: 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: 11/11/2010

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: 10/25/2010

 

Lillian on Nasal Cannula

Lilian Grace is 77 days — 11 weeks — old.

Lillian’s Weekly Stats:

• Height: 44.5 cm (.5 cm gain) 17.5 in
• Weight: 2084 gm (128 gm gain) 4 lb 9.5oz
• Head Circumference: 28.5 cm (.5 cm gain) 11.2 in

Lillian’s respiratory team, in consultation with her doctors, decided to begin to introduce Lillian to the next phase in her breathing recovery: the nasal cannula in place of the C-PAP (the nasal cannula is a clear tubing with prongs that deliver oxygen to the nose, and is much simpler to manage than the C-PAP, but doesn’t provide pressure support). At first, she will use the cannula for about 20 minutes twice a day while kangarooing or non-nutritive feeding. This will allow Lillian to exercise her breathing muscles without getting over-tired and will help Ashley breast-feed Lillian without the C-PAP apparatus getting in the way. When they first tried it this morning they gave her about 4 hours on the cannula; but they determined that she was having to work too hard and was getting too tired, so, after Ashley kangarooed, they put her back on C-PAP for the rest of the day.

Lillian also received her second eye exam. The eye doctor observed that she has stage 2 Retinopathy of prematurity (ROP), an abnormal blood vessel development in the retina of the eye in a premature infant. She will have an eye exam every week for the next several weeks. Her eyes may develop normally and require no further action; if the ROP continues to stage 3, she will receive injections of a new drug that has been very effective in treating ROP. (Up until recently, laser surgery was the standard treatment; the drug therapy is less invasive and should not require her to go back on a ventilator as would the laser surgery). ROP is very common in babies born as early as Lillian; she did not show signs of it on her first eye exam a few weeks ago.

We added a brief video of Lillian sleeping with the nasal cannula on: https://thedenbyclan.wordpress.com/2010/10/25/lillian-tries-nasal-cannula-a-video/

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!

Lillian Grace Denby Update: 10/9/2010

 

Lillian & Josh

Lillian Grace is two months (61 days) old today!

After an active day yesterday, a day that included an apnea and three separate pooping sessions (medical professionals, who are much more dignified than we are, call this “stooling”), Lillian lost an ounce and now weighs 3 lbs, 10 ozs. She has been fussy and feisty today, and clearly does not like the cumbersome C-PAP mask and tubes that she must wear — she pulls and pushes at them whenever possible. The mask and tubes are pinned and tied to the cap she wears to hold them in place; this is why she isn’t currently wearing the beautiful caps her Grandma Peggy has made for her; she also has to wear a chin strap to help keep her mouth closed and the C-PAP pressure up. Once she is off the C-PAP, she’ll be able to ditch the Irish washerwoman look and add a touch of glamor to her appearance.

Lillian’s progress with self-regulation of her temperature is very good, and beginning today, the top of the isolette will remain raised: that is, she’ll be in the open-air room environment. The NICU team emphasized that visitors now must be up-to-date on flu shots or wear masks while visiting. The NICU staff always screens all visitors’ temperatures once per day before they can go in the NICU (you aren’t allowed in with a fever), and requires masks for visitors with coughs or runny noses who don’t have fevers. Colds and flu that are routine for most of us can be deadly for those with preemie lungs.

Josh got to spend a couple of happy hours kangarooing this afternoon, and Dr Mesvin, Lillian’s neonatologist and the NICU’s medical director, came in and spent some time with Ashley and Josh. He told them that he is pleased with Lillian’s progress, and he talked with them about her breathing and about the apneas (the temporary cessation of breathing) that have frightened Ashley. He assured  them that they are expected at this stage of development and that the NICU team is very experienced in dealing with them; the apnea episodes may last up to 3 or 4 minutes with the baby’s oxygen saturation at very low levels, but Lillian will come through them with no lasting harm. The nursing team further assured them that her fussiness and feistiness are good signs: this is Lillian communicating with her mom and dad and caregivers.

The team will give Lillian her two-month vaccinations this evening.

We’ve added another brief video: in the first bit, if you listen carefully, you can hear Lillian squawking at Ashley and her nurses; in the second, you can see her open her eyes to look at her mom. https://thedenbyclan.wordpress.com/2010/10/09/lillian-speaks-a-video/

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/5/2010

Lillian on C-PAP

Lillian Grace is 57 days old.

Lillian is adjusting well to the C-PAP — mostly. She slept well overnight, gaining 20 grams. This morning she perked along at 38% oxygen, and maintained her blood’s oxygen saturation very well. About noon, while she was feeding, Ashley cradled her in the crook of her arm (the team wants to get Lillian to start making the association “Mom:Food”). As Lillian finished feeding, she scrunched up her face as she worked on a big poop; concentrating on the joys of feeding and pooping, she neglected to breathe (we call this an apnea) and set off her alarms and started to turn blue. The nurses popped in and quickly got her breathing again (they do this by rubbing her stomach and feet). Apneas are expected in babies with immature lungs and NICU teams are expert at dealing with them, and assure Ashley that she’ll be an old hand at it soon.

The team added a chin strap to Lillian’s accoutrements today. Its purpose is to help Lillian keep her mouth closed while on the C-PAP — if it’s open, the C-PAP can’t easily maintain the pressures required. After Lillian’s apnea, her respiration therapist decided to give her a C-PAP mask that has larger cannulae (the tubes that fit in her nose) — she believes the smaller ones weren’t making a good seal and allowed air to escape and C-PAP pressure to drop. After the switch, we noticed that the bubbler on the C-PAP was more vigorous and regular — a sign that she’s maintaining the correct pressure. This afternoon, her nurse massaged her chest with a small oscillating tool to help keep her lungs un-congested.

After the ventilator tube came out on Saturday, the team started Lillian on a course of steroids to reduce inflammation and support her lung function. That course ends this evening, and the team will be watching her over the next two or three days to make sure that she does ok without them. The dietitian increased her feed volume to 28 mL and made some adjustments to the added supplements to address some imbalances.

We’ve added a new video of Lillian in her C-PAP and burrito-wrap swaddling: https://thedenbyclan.wordpress.com/2010/10/05/c-papped-and-burrito-wrapped-a-video/ and a slide show of pictures taken yesterday: https://thedenbyclan.wordpress.com/slide-shows/graduated-to-c-pap-1042010/

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/4/2010

New clothes!

Lillian Grace is 56 days — 8 weeks — old.

After yesterday’s high drama, Lillian passed a restful and undisturbed night: she was very, very tired. But, she appears to be adjusting to the bubble C-PAP therapy, and to be maintaining her oxygen saturation levels as well. When Ashley came in this morning, there were smiles and hugs and congratulations from the nurses and therapists on Lillian’s team: getting off the ventilator is a very big step. The ventilator itself is gone from Lillian’s room, and so it is much quieter; now we hear just the soft bubbling sound of the C-PAP machine.

When Lillian was just a day old, the respiratory team and doctors put her on the C-PAP (Continuous Positive Airway Pressure) machine for breathing support, and she stayed on it for five days before going back to the ventilator. With the CPAP, she has a small mask over her nose with a couple of small tubes, one in each nostril. The two tubes, with Lillian’s airways, create a kind of circuit: air goes in one nostril’s tube and out the other; the machine maintains a constant pressure. The exhalation tube goes into a bottle containing a vinegar solution and as the air comes out, it causes the solution to bubble: that’s how this therapy gets the name bubble CPAP. (Any of you who have sleep apnea are likely familiar with C-PAP).

Isolette with Bubble C-PAP

Lillian lost 3 ounces — not surprising given yesterday’s exertions — but she has grown to 40.5 cm tall: that’s 15.97 inches. Josh got to come early today, and he and Ashley bathed her: she was very fussy, and keeping the C-PAP device in place is a bit of a challenge. Ashley kangarooed with Lillian for an hour, and found that, while it’s easier to move Lillian with the ventilator gone, it’s also much easier for Lillian to move herself about with the ventilator gone — and that keeping the C-PAP device in one piece and in place is as challenging during kangarooing as during bathing. And, for the first time, Ashley and Josh can hear her cry when she’s fussy — these are faint little cries right now, but thrilling — and frustrating: mom and dad have some work to do in figuring out what Lillian is trying to say.

The team decided that it was time to start weaning her from the isolette’s temperature controls again, so Ashley got to put some clothes on her baby, and learned how to swaddle her up in her blankets (it’s a technique they refer to as “burrito-wrapping” — apparently, refried beans are not involved); in addition to helping her regulate her temperature, swaddling will, in theory at least, keep her busy little hands out of trouble.

Until now, the team kept Lillian’s isolette fully enclosed in a specially designed cover that kept the interior dark all the time. Now, they will remove that during part of the day to help Lillian adjust to the natural cycles of light and dark. Her room will still be dim most of the time, but she’ll be exposed to filtered daylight.

All in all, it was a busy day in the NICU, where just about the time you think you’ve got everything figured out, everything changes, and you have a whole lot more to learn.

Thanks for your prayers and support!