In Charge

A Gathering of Denbys

A special report from grandma Peggy: Lillian enjoyed playing at Great Grandmother Denby’s house with her Aunts, Uncles, Grandparents, Cousin Katelyn and second cousins Luke, Joel and Anaya. Bubble and balls proved to be fun for the children and adults. And the youngsters decided balls were great for sitting and bouncing. Aunt Cari is a favorite and just one of the girls!

We hope to get this group together more often!

Girls On Vacation

More on celebrity doings in Huntington from paparazzi Josh:

We started the day with a puzzle that made cool noises:

Then we went outside to the tire swing (you may have gathered from previous posts that Lillian loves to swing). Lillian pushed off, lifted her feet and swung herself:

Lillian’s cousin Kaitlyn and aunt Cari showed up in the afternoon. The cousins promptly drafted Cari as a chaser:

Two girls and a Christmas tree: Lillian can’t quite believe whatever it is that Kaitlyn is doing under there!

Lillian’s grandma Peggy has undertaken the task of potty training Lillian (have I mentioned that Peggy is a saint?). Ashley had begun this, but it was interrupted by her final illness. We are all praying for success!

Lillian, from time to time, feels called to demonstrate that she is a two-year old and throws a temper tantrum. Her favorite method is to get on the floor in a frog-like position and bang her head on the floor. Peggy says that she is beginning to learn that this is not as much fun on their hardwood floors as it is on the soft carpet at Lili’s house. So, in the middle of one of her fits, they moved her to an area rug and walked out. Lili was a bit offended at the lack of interest in her dramatic performance and after a few minutes came into the kitchen looking for hugs of reassurance — which, of course, she received!

Lillian Grace Denby Update: 12/05/2010

Sleeping on mom

Lillian Grace is 118 days old today.

It’s always a great day for Lillian when her East Texas grandparents come to visit; today was no exception. Grandma Peggy and Grandpa Keith came down so Lillian could check up on them and make sure they were okay; they appear to have passed muster. While they were here, they joined Ashley, Josh and Grandma Nancy for the NICU‘s infant CPR class: it’s a requirement for mom and dad before Lillian can come home, and, with Lillian’s lung issues,  potential babysitters need to be prepared as well.

Sitting in my chair & dozing

When Ashley was pregnant, before she and Josh had any inkling that Lillian would make an early appearance, they bought a yellow onesie with a picture of the fox and the gingerbread man (from the old folk-tale: “you can’t catch me, I’m the gingerbread man,” it goes) to celebrate the end of the first trimester of pregnancy. It was the first piece of clothing ever bought for Lillian, and they thought it was very cute — and very tiny.  Lillian came along a few weeks later, and it seemed impossibly large. Finally, today, it fits our 8 pound, 9.6 ounce girl, and Lillian got to wear it, and Ashley got to shed a tear or two.

Talking with Uncle Richard

Lillian continues to eat well; at every meal, now, Lillian starts with either breast or bottle oral feeding. The nursing team currently allows her 25 minutes to finish — sometimes she finishes, sometimes she doesn’t — and then, if there’s any significant amount left, they feed her that through her nasal gavage. If she goes beyond 25 minutes, she has to work too hard — and since she is doing considerable work already just breathing, no one wants to overtax her. As her breathing improves, the team will allow more flexibility in feeding times and patterns.

Ashley dropped into the NICU in the afternoon, together with Lillian’s Uncle Richard. Lillian was awake and wanting attention, so her Uncle Richard sat with her for a while. She thinks Uncle Richard is pretty cool, and gazed adoringly at him. She’s pretty sharp at playing up to those most likely to spoil her. Ashley gave her her six o’clock feeding, though she slept through a lot of it, and Lillian finished dinner through the tube while sleeping soundly and perfuming her room with small toots of fragrance.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/03/2010

After Breakfast

Lillian Grace is 116 days old today.

Ashley met with Dr Mesvin, Lillian’s neonatologist, and Kristen, her nurse practitioner, to discuss recent test results and Lillian’s plan for the next few weeks. Lillian’s medical team continues to be pleased with the progress she is making with her breathing program — Lillian has responded well to slow but steady downward adjustments in her breathing support. The echocardiogram she had a few days ago showed that her pulmonary pressures have improved; this is an early indicator that, while she will go home with an oxygen tank to support her breathing, she will probably be on it for 3 to 4 months, rather than 8 to 12 months. However, it looks like, at the rate Lillian’s lungs are progressing, she will be in the NICU for another four to six weeks; she probably won’t make it home in time for Christmas.

The ecg also showed that the small vents in her heart (PDA and PFO) are either completely closed or nearly so. And, the pediatric ophthalmologist returned, and confirmed that her eyes have developed as they should; she won’t need to have them checked again until she is a year old.

Sweet & freshly bathed

Lillian’s transition to oral feeding has been very successful to date: she receives five of her eight daily feedings by breast or bottle, and Kristen wrote the orders to complete the transition to full oral feeding this evening. Lillian continues to gain weight (8 lbs 4.7 oz last night), and now seems to enjoy both breast and bottle (though mom is clearly far and away her favorite method of feeding). Lillian still has some issues with constipation (the result of the iron supplement), but hasn’t needed any artificial help lately; she strains mightily to fulfill this duty, and seems vaguely disappointed when she only produces a few smelly gas toots.

Age & beauty

Lillian has a few things to look forward to in the next week or two: she’ll get her second round of vaccinations on or around her four-month birthday; the nurses tell us that she’ll probably object to them much more than she did at two months, as she is more expressive and alert now than she was then. She’ll also receive an MRI of her brain. This will give the doctors a much more detailed look than did the ultrasound scans she received earlier, and pinpoint any problem areas; it will also provide a baseline for her pediatricians and developmental specialists as they monitor her progress over the next four or five years. And this weekend, her East Texas grandparents, Peggy and Keith, are coming into town to join Ashley, Josh and Nancy for an infant CPR class — Lillian is actually going to leave the NICU one of these days and they are going to be ready!

Thanks for your prayers and support!