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!

Living in the NICU

Lactation Room in the NICU with pump in foreground

I have to pump at least 9 times a day. I really cannot have more than 4 hours between pumpings. My day starts at 4 am during the week. I wake up and pump and Josh calls the NICU and we get our morning update. It is usually just her weight and vent settings.

I try to sleep a bit more but am up by 7 am. The pump pieces must be sterilized, hungry moms need breakfast, and cats need to be paid attention. My wonderful ride is there by 9 am to whisk me away to the hospital.

Entrance to the NICU at Memorial Hermann Southwest

Walking down the hall to Lillian’s room is filled with such anticipation. My dad and I go into her room and peek at her. Sometimes we’re lucky and they are changing her diaper which means a much better view. We wait for the nurse practitioner to give us the morning update and then it is time to pump. The rest of my day is spent reading by her bedside, singing or talking to Lillian, assisting with diaper changes, and pumping. Josh arrives as soon as he can after work and we spend some family time together.

Entrance to the Daisy Room

Tuesday is my hardest day. It is grand rounds day. I go and sit at a big table with all the people on Lillian’s team. It feels somewhat like the inquisition at the end of that table with everyone looking at you. I learn all the scary things she is facing in the next couple of weeks. I have learned that it is okay to have a bad day — especially on Tuesdays.

I downloaded an app that allows me to blog by Lill’s bedside. So I expect to be more of a presence here in the coming weeks. I’ll leave the details to my dad. It is much easier for me to look at the big picture. All prayers and good thoughts are always appreciated.