Lillian Grace Denby Update: 8/31/2010

Diaper Change 8/31/2010

Lillian Grace is 22 days old.

Tuesdays are the days on which the NICU team normally does its grand rounds meetings, but this afternoon another preemie was being born (she obviously hadn’t checked the meeting schedule), so most of the team was busy with that delivery. Ashley did get a full briefing from Lillian’s NICU doctor and Nurse Practioner a bit later in the afternoon. Her lungs, even with the jet ventilator, have not shown much change — no worse, but also no better. This remains her biggest current challenge: it’s not unusual in a baby this small (the lungs are developed fully only very late in a full-term baby); we, of course, would love to hear that Lillian’s lungs were developing faster, but they simply need more time and nutrients (mama’s milk) — this is precisely what the NICU specializes in: giving pre-term babies the time for their bodies to develop, and we are thankful for the skilled and compassionate team at Memorial Hermann Southwest — they are great people to have on a baby’s side.

She received a diuretic this morning: when a baby has a ventilator tube over a prolonged period, some fluid can build up, so the team wanted to deal with that; they also are reducing her milk volume by 1 ml to help with that; at the same time, they are increasing her calorie supplement — they’d like her to be gaining weight faster than she is (though mother‘s milk is still preferred to liquified cheeseburgers). It’s possible that with the diuretic, she might have some small temporary weight loss… (Most of us grownups don’t track our weight to the nearest gram; although we’re looking at her weight everyday, for accurately gauging progress, the NICU team suggests we compare week to week).

So, our girl is hanging in there, and mom and dad are by her side every day, and we have great professionals watching over her day and night, and we have all of you kindly offering up prayers and support.

We are deeply grateful.

Tuesday Tune-up: A Video

Lillian Grace Denby Update: 8/30/2010

Lillian and her Dad

Lillian Grace is 21 days — 3 weeks —  old today!

Lillian is definitely growing: she’s gained another ounce and now weighs 1 lb 13 ozs; she’s grown another quarter of an inch and is now 12.5 inches tall; and her head has grown: its circumference was 20.5 cm at birth; today it is 22 cm.

She spent most of the day in the dark again: the team is trying to limit the amount of stimulation she receives, and let her concentrate on breathing, which continues to be her biggest challenge; since the team is monitoring her breathing very closely, they are taking frequent readings on her blood gas levels, which requires frequent blood samples; therefore, she got another blood transfusion today. In addition she got a shot of vitamin A, which is supposed to aid in lung development. Her sodium levels were low, so they’ll add some sodium to her feedings (granddad’s offer to puree some bacon cheeseburgers to add some fat and sodium to her diet was, for some reason, not received with much enthusiasm).

She is, if I may say so, a remarkable little girl, and wonderfully supported by all of your many prayers and kindnesses, for which her mom and dad are deeply grateful.

My Nurses Won’t Leave Me Alone: A Video

Lillian Grace Denby Update: 8/29/2010

Lillian Grace 8/28/2010

Lillian Grace is 20 days old.

Today was a peaceful day in the NICU: Lillian spent most of it sleeping in the dark, with her dad sitting beside her reading and napping. She started off the day filling her diaper and then, in the midst of the diaper change, felt the need to make a further statement in poop, necessitating a change of bed linens — at times like this parents are very glad to have a highly skilled nursing staff on hand!

Lillian’s team measures her height every Monday morning: last Monday was taken up with some tense breathing issues, and none of us checked on her height; Josh thought to ask today: last Monday, she was 12 and a quarter inches tall — she’s grown .75 inches since birth! As one of the nurses put it: she’s now a “5 dollar footlong,” so of course now none of us can get that jingle out of our heads. We think that tomorrow will show more growth. She has maintained her weight for the last couple of days, and is still on the jet ventilator; we hope to have a better idea tomorrow on whether that is helping her lungs.

Ashley and her mom went out shopping for various necessities, mostly related to milk production and comfort for Lillian’s milk machine (i.e., mom). Ashley is currently producing milk at greater volume than Lillian can consume; the excess is frozen and is good for about a month. If Lillian can’t use it before it goes out of date, Ashley will give it to the hospital’s Milk Bank, where it will be used for a baby whose mom can’t produce enough milk.

Thanks for your prayers and support!

Lillian Grace Denby Update: 8/28/2010

Dad keeping Lillian warm

Lillian Grace is 19 days old today.

Lillian continues to work on adjusting to her new ventilator. Her nurses think that her morning x-ray showed just a bit of improvement: we’re looking for the x-ray of the lungs to show large smooth dark areas instead of hazy areas that resemble spun glass; that will mean that the oxygen and co2 exchange is happening as it should. We’re happy for any improvement, even very little steps.

She maintained her weight of 1lb 12ozs: encouraging, because her team expected some weight loss with the new vent and all the activity yesterday with bed changes and so on. She greeted Ashley and Josh with a prodigious and stinky poop this morning and peed all over her blanket when getting her diaper changed (NICU moms and dads perhaps tend to appreciate these events more than most folks).

We added a new slide show and gallery today to the blog: Hangin’ With Dad.

Thank you for your prayers and support.

Lillian Grace Denby Update: 8/27/2010

Lillian Grace After her Bath 8/27/2010

Lillian Grace is 18 days old today.

Yesterday was  a bit rough, but we got the results of yesterday’s echo cardiogram this morning and they were better than expected. She does have a small PDA (Patent Ductus Arteriosus: Patent means open or unclosed), but her team expects this to close on its own and believes that right now the best strategy is to leave it alone.

The ecg also showed that she has a PFO (Patent Foramen Ovale, which is a hole between the left and right ventricles); this is also small and expected to heal on its own. Both of these conditions may explain some of her respiratory challenges; these vents are normally open when the baby is in the womb: essentially, they are part of the mechanism whereby unborn babies’ blood bypasses the lungs; in full term babies, they usual close within a day or two of birth, and are fully sealed within 2 -3 weeks.

Lillian is still working on her breathing; she’s now using a jet ventilator; the conventional ventilator that she has been on lets her lungs breathe in normal breathing rhythms; the jet ventilator delivers very rapid small puffs of air to oxygenate the blood without requiring full inhalations and exhalations. (explanation courtesy of edwardhughes.com)

Lillian continues to feed like a champ: she gained 2 ozs and is now up to 1lb 12ozs! She’s taking the maximum volume of mom’s milk recommended for her height and weight (15 ccs); the milk is fortified with additional calories to ensure she has enough energy for all the work she is doing. The nursing team changed her isolette this morning; every two weeks, she gets a new one and they take the old one in for a thorough cleaning and maintenance.

We’ve posted some video we took this morning right after her bath: you can see her grab her mom’s finger and she also waves to her fans (thedenbyclan.wordpress.com).

We really are grateful for all of your prayers and support.

Lillian’s Morning: A Video

Lillian Grace Denby Update: 8/26/2010

Lillian's Ventilator Screen

Lillian Grace is 17 days old today.

Today has been one of Lillian’s more challenging days. Her breathing has not improved as the team had hoped; the team decided to do an echo-cardiogram; there is a vent near the left ventricle called the PDA (Patent Ductus Arteriosus) and it doesn’t always close and blood can get into the lungs (I hope I am getting this right). So the echo-cardiogram should show if this is an issue or if there are other heart issues, and then the team can develop a plan of action. It’s pretty stressful for mom and dad and results won’t be back for a day or two. This problem is not unusual in preemies of her age.

Otherwise, Lillian is doing well… eating really well and maintaining her weight, though she hasn’t gained any today.

Lillian Grace Denby Update 8/25/2010

The Mechanical Boob: Lillian's Feeding Pump

Lillian Grace is 16 days old today and her gestational age is 26 weeks.

She gained just another little bit of weight — she’s not quite 1lb 11 ozs, but is getting close. The respiratory team challenged her last night, pushing to get her off the ventilator. She responded well, and spent much of the morning on her back, where she finds respiration more difficult: but she did well. Dr Romero, the current lead neonatologist, plans to take her off the ventilator Thursday or Friday, and put her back on the CPAP to see how she does.

So today was one of the good days in the NICU, and Ashley spent part of it dozing beside Lillian in her room — there’s a very comfortable reclining chair for the parents to use. On one of the recent not-so-good days Ashley dozed off and dreamed that the NICU moved to a cruise ship due to a terrorist threat to the hospital, but the terrorists found the cruise ship and attacked it; before this drama reached its conclusion, she woke up, so we will likely never know if the terrorists succeeded or not — a 21st century nightmare for a 21st century mama…

Josh is still buried in the first week of school at UH, patiently explaining to a long line of students that they were not the first to think that they could just check their textbooks out from the library to save the cost of purchasing them…

Ashley shot some great video of Lillian (whom we objectively and scientifically rate as one of the cutest babies ever) which we have posted below. The video is just over 3 minutes… some is dark and grainy, but you can see her open her eyes and move and suck on her pacifier…