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: 11/26/2010

Bouncing

Lillian Grace is 109 days old today.

One of the things Ashley and Josh have discovered recently is that while on the one hand preemie parents are delighted that their growing baby can now cry and fuss and be cantankerous in the most baby-like way, on the other hand they might occasionally find themselves wishing that she would go a little easy on the cantankerous-ness and try a little more sweetness and light. All 7 lbs, 11 ozs of Lillian spent the morning and evening testing the patience of her mom and dad.

Getting a good breast-fed meal from mom helped in the morning and at lunch time. Then, dad holding and swaying with her relieved the boredom of the NICU — for a bit.  Then, a session of back-patting — for a bit. Then, listening to mom sing — for a bit. Then, bouncing in her bouncer — for a bit. Then, mom reading poems — for a bit. For Lillian, it’s somewhat like the rest of us feel when the newness of our cable subscription wears off, and as we zap through each of the 400 channels, we realize there is not a thing of interest for us to watch. Even her evening breast-feeding bored her, and after Ashley and Josh finally got her to sleep, they went home; channel surfing is not in their evening plans.

Lillian is doing well on the nasal cannula and Vapotherm; she spent most of the day at 30% oxygen (down from 38%). The nursing team returned her to a nasal gavage today, though with a smaller tube than last time. They want her mouth to be unobstructed, encouraging positive associations with her oral feedings.

Ashley and Josh had a pleasant lunch with Lillian’s great-grandmother Joan, who is (happily) out of the hospital, home and recovering nicely. They plan to sleep late tomorrow morning and grandma Nancy is going to go give Lillian her morning feeding by bottle. She is trying to pretend that she is not excited.

Thanks for your prayers and support!

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:11/23/2010

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: 11/13/2010

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!