Mark's journal about baby George
March 2005 Archive
Thursday, March 31, 2005
George still has mild intestinal problems, and we're not exactly sure what the cause is, or if it's bad enough to really worry about. Otherwise he's sleeping well and enjoying being held.
He showed off for the occupational therapist, downing his entire bottle for her. She came to see how his breathe/suck/swallow processes were going, and he got an A+.
George now gets to have 6 hours of cannula per day, 3 in the morning and 3 in the evening. His feedings are up to 65 cc. Way to go, George!
Wednesday, March 30, 2005
George continues to make progress:
- His weight is 7 pounds 15 ounces
- His bottle feedings are now 5 times a day
- His cannula time is now 5 hours a day (split over two sessions)
He's suffering from a bad diaper rash. His nurses are going to help him air out his hiney, to make things better. They are also going to check him for a viral or bacterial infection, since he's had the runs lately.
Tuesday, March 29, 2005
George now gets to "do cannula" when he's feeding, not just at night. He's up to 7 pounds 13 ounces. He continues to increase his bottle feeding amounts, sometimes finishing his whole 60 cc feeding via bottle, without even drooling.
He currently gets bottle fed for three of his eight daily feedings. He's figured out when his feedings are, and if he doesn't get a bottle, watch out!
Even though his oxygen needs have recently crept up into the mid 30s, we're encouraged by the fact that his oxygen level has been very stable (37%), compared to the wild fluctuations we've seen in the past.
Monday, March 28, 2005
George is 3 months old! Happy birthday!
He did very nicely today. He drank an entire 60 cc bottle at 8:00 a.m., another 43 cc at lunch, and another 35 cc at dinner.
His eye exam was good, barely at stage 2 ROP, which is very encouraging.
Here's a picture of George's world at 3 months:
His froggy is helping to hold in his pacifier.
Sunday, March 27, 2005
Happy Easter! George was gorgeous today. His weight is 7 pounds 9 ounces, and his feedings are now 60 cc (2 ounces) every 3 hours. It took a while, but tonight he drank his entire 60 cc bottle: very impressive!
He's learning a new game, "If I get fussy, people pick me up."
He's getting an eye exam tonight. I hope his ROP is stage 1, but won't be surprised if it's still stage 2.
Over the course of this past week, he's started smiling, and he's become more and more alert.
Tomorrow he's getting blood gas lab work and an x-ray.
Saturday, March 26, 2005
George is now up to 7 pounds 8.7 ounces.
His oxygen needs were a little higher today (high 30s).
We spent some quality time with him tonight. He is more adorable than ever.
Tonight he drank 44 cc via bottle, thanks to a new nipple configuration, which doesn't require as much sucking.
Friday, March 25, 2005
George had a good day today, it was a fairly quiet day. Allison got to give him a bath, made easier since he was wearing the cannula. His feedings are up to 58 cc every 3 hours, and he's drinking 30-40 cc of that each time.
His weight is up to 7 pounds 6 ounces.
George and I had a nice quiet visit in the evening.
Thursday, March 24, 2005
Tonight George had his first combination cannula/bottle feeding. He was fantastic. He drank 45 cc out of 55. And, his cannula time is now 3 hours.
He was grumpy and crying all day, which is not normal for him. Turns out they stopped his corn oil supplement two days ago, and today he was constipated. He got relief tonight. Thank goodness that's all it was: he's feeling great now.
Wednesday, March 23, 2005
George's second cannula session went great tonight.
In addition to the pictures I've taken, we keep a disposable camera at George's bedside, so his nurses can take pictures for us. We just got some of those developed. Here's a family portrait from a couple of weeks ago, during a very quick ventilator equipment change (which is why George had nothing on his face back then):
What you don't see, off camera, is three nurses hovering over the equipment and one standing close by with an oxygen mask for George.
Anyway, back to today: his oxygen needs were no higher than 32% , and his blood gas levels are fantastic. Tonight he will likely be ready to try the combination of cannula breathing and bottle feeding. Everyone in the NICU is celebrating his progress.
Tuesday, March 22, 2005
George passed a major milestone today: he got his first nasal cannula session! This is the beginning of his transition off CPAP. He's been on CPAP one month (which he tolerated quite well). When he's completely off CPAP (pressurized oxygen) and on cannula (unpressurized oxygen), we can start to think about bringing George home. I'm guessing that's still roughly five weeks away.
The first cannula session (also called a "cannula sprint") was tonight, lasting almost two hours. At first, not having the familiar CPAP tubes on his face was a little scary for him:
Then, after a few minutes, he relaxed and had a good time the rest of the session:
Other notes for today:
- He's 12 weeks old!
- He weighs 7 pounds 2 ounces
- His feedings are up to 55 cc every 3 hours
Monday, March 21, 2005
What a day!
George weighs 7 pounds!
His bottle feedings are going so well, that he now has permission to have them three times a day, with no limit on the amount (within the total feeding amount of 50 cc 8 times a day).
He is still getting air pressure support from CPAP, however, the breath rate (rate of the additional pushes of air per minute) today went from 20 to 10 to 0. That's a dramatic change, and he was fantastic with it.
In addition to all that, his oxygen needs averaged in the mid to high 20s today. Well done!
Sunday, March 20, 2005
Drinking from a bottle is hard work!
George weighs 6 pounds 12 ounces, and his feedings are up to 50 cc every 3 hours. His oxygen needs have been in the low 30s all day. He's doing great, and was very alert today.
Look at this sweet letter posted on the public bulletin board at the NICU:
Payton was in the NICU about four or five months.
Saturday, March 19, 2005
George is now at 6 pounds 10 ounces, and 17.5 inches long.
George took both of his bottles perfectly today, and was really awake and alert this evening. He's got a bad diaper rash, so brave Nurse Toni gave him some time today with his bottom exposed, to dry and heal.
Friday, March 18, 2005
George is now at 6 pounds 8.1 ounces. He continues to keep his oxygen needs in the low 30s. He got an eye exam, and his ROP hasn't changed (good news).
His CPAP pressure has been lowered to 8, and his blood gas results were so good today, that they aren't testing them again for a while.
Overall, we're pleased as punch!
Thursday, March 17, 2005
George had another good day today. His oxygen needs were in the mid to low 30s, and the doctors decreased his CPAP breath rate from 30 to 20 as part of his weekly pressure weaning.
He also did great with his bottle feeding, drinking 19 cc in the morning and 15 cc this evening.
Wednesday, March 16, 2005
For a change of pace, Allison and I went to see George at 8:00 a.m. Compared to our usual 11:00 a.m. and 8:00 p.m. visits, he was much more awake and alert, just as his nurses had told us. He had a great time making eye contact with us, and looking around at everything in the room, and we had a great time with him.
He did a great job with his bottle feeding today, quickly drinking 17 cc in the morning and 20 cc in the evening.
Allison went back up to see him in the evening, there was a lot of noise and commotion nearby, but George was calm and relaxed. This is good, considering that weeks ago he was rather sensitive to noise.
His oxygen needs stayed generally in the low 30s. :-)
Tuesday, March 15, 2005
George is 11 weeks old today! He's come a long way.
Here's a picture of all 6 pounds 3 ounces of him:
His oxygen needs are still in the 30-40% range. For the next few weeks the plan is to wean him off his CPAP settings, very slowly.
Monday, March 14, 2005
George had his weekly eye exam. He's still Stage 2 Zone 2, which is relatively good news.
He had more bouncy seat time today, and enjoyed it.
His oxygen needs were very good, in the low 30s this evening. That's outstanding.
Sunday, March 13, 2005
George now weighs 6 pounds! Wow!
The doctors have reduced his CPAP pressure setting from 10 to 9. This is a good sign, as they are working on weaning him from assisted breathing.
Saturday, March 12, 2005
Today George did very well. His oxygen needs were in the high 30s and low 40s. He did so well yesterday with his CO2 blood gas that he didn't need any labs today (a first for George).
We took him his new bouncy seat, and he loved it, taking a two-hour nap in it to break it in.
He's becoming very social and aware of his surroundings, which of course is very entertaining to us.
Friday, March 11, 2005
Today George Vivian Millard got to meet his great-grandson:
Thursday, March 10, 2005
George had a pretty quiet day today. His oxygen needs were higher than yesterday, but lower than the week leading up to that. He had a surprise visit from Jim and Henry today, which was also a delightful surprise for Allison.
His weight is up to 5 pounds 12.5 ounces. Nurse Lesa found him a boppy and made him a nice nest.
Wednesday, March 9, 2005
George had an exceptional day today.
By the end of the day George's oxygen needs were down to an amazing 37%!! His CO2 level was down in the mid-60s, which is also very good. We heard that Dr. Glomb just smiled and smiled when he came to see George today.
Nancy had a fun visit with George, and also enjoyed meeting Elaine O'Brien.
Tuesday, March 8, 2005
George is 10 weeks old! He looked at himself in the mirror for the first time today.
Dr. Glomb (Dr. Scalo's partner) came by today for a consulting assessment of George's pulmonary condition. As a result, the NICU staff have made some adjustments:
- His target blood oxygenation saturation target range was raised from 88-95 to 92-97, which means his oxygen needs will be higher, for now.
- His various chloride medications (which help his CO2 levels) have been doubled.
- His lasix (which he has taken for a long time, to reduce his lung fluids) has been increased from every-other day to every day.
- He had been taking caffeine, which is now replaced by aminophylline.
If the above changes don't have enough impact, George will likely be re-intubated for a couple of weeks, while he gets bigger and grows more lung tissue.
Monday, March 7, 2005
In an attempt to improve his respiratory performance, the doctors increased George's CPAP pressure setting from 9 to 10. On a positive note, his chest x-rays have been looking better (less cloudy, better expansion) recently.
I had a great visit with him tonight. His oxygen needs were at 60%, better than yesterday. He was back to his good bottle feedings, and he was happy and alert while I held him for an hour and a half. He was mesmerized by the color of my green "Coachella Music Camp" T-shirt. I'll have to take him to the Coachella music festival some year, when he's old enough to stand the desert heat.
Sunday, March 6, 2005
George has been on CPAP for 12 days, which we're very proud of. However, his oxygen needs are creeping up again, so he may not be able to stay on CPAP much longer. Today his oxygen needs were in the high 60s to high 70s: not very good. Coupled with his high CO2 blood gas readings, you could definitely say he's getting close to needing to be re-intubated. Nevertheless, life progresses one day at a time, and for today, he stayed within bounds for CPAP.
Big thanks to both grandmothers for hanging out with George this weekend. They freed us up to get some moving done.
Saturday, March 5, 2005
George is up to 5 pounds 8 ounces, at 34 weeks post-conception.
He got an eye exam today: same results as last time (stage 2 ROP). That's good news, in that his eye condition is not worsening.
Aunt Dorothy and cousins Lara, Monica, and Julie came to visit today.
George's nurses felt that he could still benefit from his practice bottle feedings, despite Dr. Scalo's advice to curtail them. So I asked who had jurisdiction in such matters. Turns out Dr. Scalo is just a consultant, and the NICU doctors and nurses still make the final decisions about George's treatment (as long as he's in the NICU). They decided that, in his current condition, if George is having a good day and not struggling with his bottle, that he can have it, otherwise skip it for that feeding. At his stage, the bottle time is just for George's pleasure: otherwise it wouldn't be a normal part of his feeding.
He's looking a little pale. We'll ask about that tomorrow.
Friday, March 4, 2005
First some overdue pictures.
George's new bed:
George's nine-week portrait, a few days late:
He's up to 5 pounds 3.5 ounces. His feedings are up to 41 cc every three hours.
Today I met Dr. Scalo, a pediatric pulmonary specialist assigned to George's case. He's pleased with George's course of treatment. The only tangible change he's making is to stop the bottle feedings, since it takes a lot of energy from George. Dr. Scalo would like George to save that energy for his respiratory healing.
Today George was very awake and alert, really studying his surroundings. He is mesmerized by the orange tag on his feeding tube.
Thursday, March 3, 2005
George is now in a big-boy bed! We put up his mobile, and he's enjoying it. He was very awake this evening, and looking around at everything.
His oxygen needs are still in the 50-60s, which is better but not as good as we all would like. If it creeps back up into the 70s, we'll likely either have to re-intubate, try another round of steroids, or both.
He sure is handsome! I'll take some pictures tomorrow of both George and his new bed.
Wednesday, March 2, 2005
George had another good and busy day:
- He is officially 5 pounds! That's quite a milestone.
- While I was holding him today, he tried his first 20 cc bottle, and he DRANK THE WHOLE THING.
- He got his first round of immunizations (five shots).
- He also got his first in a series of epogen shots, which should boost his slightly-low red blood cell count. This is in place of additional transfusions.
Tuesday, March 1, 2005
A lot of things happened today:
- George is nine weeks old.
- He weighs 2.213 kg (4 pounds 14 ounces). That's triple his birth weight of 735 g (1 pound 10 ounces).
- His feedings are up to 39 cc every 3 hours.
- Cousin Janet came to visit!
- Yesterday there were some anomalies in his heart rate, so the doctors ordered an echocardiogram to determine what was going on. The results came back today, and his heart is just fine. The anomalies were just that.
- His chest x-ray was stellar.
- He's still working on his 10 cc trial bottle feedings, once a day.
- For the last two mornings his CO2 blood gases have been extremely high, but after some CPAP setting adjustments, his blood gases are looking better.
- His oxygen needs are still in the low 70s, higher than we'd like.