Monday, January 31, 2005

George found his thumb. How smart! Who needs that pacifier?

He has been diagnosed with a hernia, which will require surgery when he's older, before he comes home.

He underwent a lumbar puncture ("LP," what we used to call a spinal tap) tonight. The procedure went well and was over quickly. It has been ten days since he had a positive bacterial culture, and the LP is a last step to ensure that the infection did not get into his spinal fluid/brain.

He had a little blood in his stool, so they took an X-ray of his abdomen (which looked fine) and switched him from tube (milk) feeding to IV (nutritive fluid) feeding for a while. His feedings had been up to 26 cc (almost an ounce) every three hours.

His oxygen needs are at about 58%, well enough for the doctors to want to do the LP. He's resting tonight. Hopefully tomorrow will be a slower day!

Sunday, January 30, 2005

George had a big day today, and it went well:

He graduated to the big boy ("regular") respirator, a major event, especially since he has tried twice before. So far he is doing much better. The nurses are already weaning his assisted breaths from 50 to 36 per minute, a good sign. He is "breathing over" the respirator, meaning breathing on his own a little, which is great.



He spent a lot of time today opening his eyes and looking around. He is also continuing to enjoy pacifier time.



His weight is up to 2.96 pounds (we'll call it 3). He is now 15" long, 2 3/8" longer than when he was born.



He's getting closer to being IV free, with one less IV as of today. He's taking more and more medicine though his feeding tube, which is easier on his system overall, but more challenging for his GI tract.



His umbilical cord stump fell off.



His feedings went up to 22 cc every three hours.

Here's hoping that all that change doesn't overwhelm him.

Saturday, January 29, 2005

George's oxygen needs are still in the high 60s/low 70s. Yesterday that had us concerned, but after talking with NNP Elaine, we shouldn't be too alarmed. The steroids take longer than the first two days (more like a week) to really do their work.

George seems to have gotten some good rest today, after a very irritating yesterday.

His feedings are now at 20 cc every three hours. Go George!

Friday, January 28, 2005

Today's good news:

George is one month old! Happy birthday! Nurse Lesa was very thoughtful and brought a cake for us.



His feedings have gone up to 18 cc every 3 hours.



He's off of his IV nutrition, and getting all nutrition (milk + vitamins) through his feeding tube.



He's enjoying more pacifier time. According to Nurse Kim Miklis, since he gets so much negative oral stimulation (annoying ventilator tube and feeding tube), it's important that he have the pacifier (dipped in sugar water) for positive oral stimulation.

Today's not-so-good news:

George didn't make any progress with his oxygen needs. He plateaued in the 60%s during the day, and this evening needed to temporarily return to 100% oxygen due to the very noisy and chaotic environment (eight babies in our bay + visitors). We really hope this setback is temporary.

George had another good day today, and so did we.

His steroid treatments continue to help his oxygen needs, now down to about 60% (21% oxygen is "room air," normal for you and me). He is able to maintain temperature better, so he no longer needs the Saran Wrap across his bed. His feedings have increased again, to 16 cc every 3 hours. All good news.

Early in the day he got to enjoy his first-ever pacifier, which he worked on for a solid hour, according to Nurse Ruby.

Tonight Nurse Lesa helped us give George a sponge bath, which was well received. We even got to give him our first KISS! It felt great to have so much contact with our son.

Wednesday, January 26, 2005

George had another good day. His oxygen needs were in the low 80s to high 70s: this tells us the steroids are starting to work.

His bacterial infection is officially gone.

Here's a photo of George today (age 4 weeks 1 day):

Click here to see a 30-second movie (4.9 MB).

Tuesday, January 25, 2005

George is four weeks old!

10:05 P.M. George is resting well tonight. Seven hours into steroid treatment, not much has happened yet, but that's normal. We should hopefully begin to see results tomorrow.

3:00 P.M. George started steroid (methylprednisolone a.k.a. solumedrol) treatment. Dr. James Creswell and NNP Elaine (and Drs. Prabhu, Kelly, and Landers) have been discussing George's condition for days, and decided today was the "line in the sand."

This is a big event for George, and should hopefully kick-start him on his way to breathing without assistance. The last few infection-free days have made him stronger, but it's obvious that he has serious respiratory issues. The treatment should last 9-12 days, and should achieve maximum impact around day 6.

Monday, January 24, 2005

9:30 P.M. George had a good day today!!

• His third (in a row) bacteria culture came back negative.
• His weight is now at 1140 grams (2.5 pounds)
• His feedings have increased to 10 cc every three hours.
• His noise/touch tolerance has improved greatly.
• Although his supplemental oxygen is still at 100%, his saturation levels this evening were rock solid at 95%, a big improvement over the last few days.

The doctors have taken him off the nitric oxide treatments (a vasodilator) and put him on albuterol (another vasodilator).

At lunchtime we had a discussion with Dr. Creswell (neonatologist) about the looming prospect of steroid treatments for George's immature lungs. He reiterated what we had previously been told (covered below). However, tonight at least, things are looking good enough to maybe consider not having to go that route (yet).

Allie and I are giddy with relief after having an entire good day of solid progress. Here's hoping it continues.

Sunday, January 23, 2005

9:25 P.M. We got our second negative bacteria culture results today. That's very encouraging news. If we get another negative report tomorrow, we'll consider the infection practically gone (officially the results need to be negative for five days, not just three).

As far as George's respiratory system, we are still in a holding pattern: his supplemental oxygen needs are still maxed out at 100%, and out of that 100% he's only getting roughly 85% of the oxygen his body needs.

Back on the good news front, he's growing out of his micro-preemie diapers, and his breast milk feedings are up to 10 cc (1/3 ounce) every four hours. He'll get another cranial ultrasound Tuesday, this time to measure general brain development (we think). His previous two scans (at ages 1 week and 2 weeks) were looking for cerebral bleeding, and both were negative, which was very good news.

Saturday, January 22, 2005

11:00 P.M. We had one bit of good news today about George's bacterial infection: after days of positive culture results, we finally got our first negative result. It still needs another 48 hours to finish its 72-hour growth period, but so far, it's negative, which might signal the beginning of the end of the staph epi infection.

On the respiratory front, it was another day of treading water, waiting for the apparently inevitable steroid treatment to begin. That said, George is now another day older, bigger, and more mature: all factors that will reduce the adverse effects of the steroids. Every day counts.

George is extremely sensitive to noise or touch: the slightest of either sends his blood pressure up and his oxygen saturation down. The nurses have been trying to minimize his stimulation, doing what's called "cluster care," where they group events (feeding, diaper change, meds) together to minimize the number of times per day he gets bothered.

Please take a moment with us, to remember Grace Elizabeth, George's twin, who was stillborn two months ago today. We sure do miss her.

Friday, January 21, 2005

2:00 P.M. George is stable today but not really improving. Each day he "treads water" is slightly good in that overall he gets a day more development (and grows new lung tissue), but that progress is generally outweighed by the lack of healing.

Here's a recap of the overall situation:

He has two problems, which in combination are taxing him:

Chronic lung disease

Bacterial infection

The chronic lung disease is the current critical item. George is holding his own with the assistance of the hi-fi ventilator and nitric oxide machines, however, the oxygen assistance is at 100%, meaning when he tires, they can't turn it up any higher to help him. He may get stronger, but will likely weaken, at which point the machines won't be able to provide enough breathing assistance. When that happens, it's time for the risky but powerful steroid treatment, described below.



The bacterial infection is still serious. We should get new culture info back later today to see how that treatment strategy is working. There are still several days of options to explore before we're out of things to try.

Thursday, January 20, 2005

11:40 P.M. We had a discussion with Dr. Landers (who was the neonatologist at George's birth). She said George is not doing well, and if he doesn't make a big turn for the better overnight, that it's time for the last big option: steroids. The pros are: 90% of preemies who are given steroids get better quickly. The cons are 15% of preemies given steroids develop some form of cerebral palsy. We'll see what happens tonight.

11:35 A.M. George is having a rough week. Dr. Lloyd had an extensive discussion with Allison and me last night. He explained that George's bacterial infection is spreading, and dangerous. His survival chances are estimated at 50%. To fight this, he outlined a detailed plan of attack, which includes adding nitric oxide therapy, removing infected IV lines if appropriate, and adjusting medications/sedatives.

This morning he seems to be responding well to the changes. The daily bacterial cultures take 24-48 hours to grow results: yesterday's came back positive (bad).

It's going to be a long weekend, please keep George in your thoughts and prayers.

Wednesday, January 19, 2005

12:00 P.M. Madeline (George's "Gram") visited George this morning, and it sounds like he (with the vancomycin he's taking) is not fighting the staph epi bacterial infection. Needless to say, this is a disappointment. We'll confer with the staff soon to see what the plan is.

4:00 A.M. Lesa reports George had a good night. His O₂ needs are down to 60% for now (ultimately we'd like to see it at 21%, which is normal "room air").

Tuesday, January 18, 2005

8:30 P.M. George is three weeks old!

As you can see, he's grown quite a bit since day 1. The flaky skin thing is normal for his age. Look at all that hair!

George continues to suffer from chronic lung disease and a "staph epi" bacterial infection. We're waiting to see how he responds to treatment. He's resting today, and seems to be in a bit of holding pattern.

Monday, January 17, 2005

9:20 P.M. Jenn Knight is our nurse tonight, and you can tell she's good at her job. She's experienced and aggressive at adjusting George's various equipment settings, and her attention to detail puts our minds at ease.

George looks rather puffy. He's retaining fluid, an intentional move by the doctors to help raise his blood pressure, which was a little low. While this looks a bit scary to us, Jenn explains that it's okay.

3:00 P.M. George is having a restful day. His O₂ needs are high (98%), but Nurse Ruby Park explains that his blood gases (especially CO₂ output) look quite good, and that's more important than the fact that his O₂ needs are higher than normal. George is getting lots of sleep, so Allie and I are happy.

Sunday, January 16, 2005

9:20 P.M. Doctor Scott and Nurse Lesa Bulman are sick about administering last night's overdose. Lesa apologizes and continues to monitor George's levels. For his part, George seems okay, resting on his tummy and defiantly pushing his rump high in the air.

8:00 P.M. NNP Elaine left us voicemail informing us that the cultures have grown to reveal that George does indeed have a bacterial infection, of the gram-positive cocci type. Vancomycin is the perfect drug to stop that, so at least the staff guessed correctly with their prophylactic prescription. Despite the accidental 10x overdose, his lab work has come back, revealing vancomycin levels (64) only 50% above a normal dose (40-45). Sounds like George's physiology did a super job dealing with that. Thank goodness.

1:00 P.M. Unfortunately, George is back on the preemie "hi-fi" ventilator, for the third time since his birth. Each of the two times he has graduated from the vibrating hi-fi ventilator to the normal "big boy" ventilator, he's had a setback, and has returned to the hi-fi. Rats.

Even worse, despite their procedures to closely check dosage, George was given 10 times (!) the desired dose of vancomycin last night. Neonatal Nurse Practitioner (NNP) Elaine Eike and Dr. Werner (pulmonary specialist) brief us about the error, and tell us there's a risk that the overdose could cause hearing loss. We'll just have to wait to see how this all plays out. Initial indications are that his kidneys are processing the overdose effectively, hopefully this will minimize the potential for damage.

---missing days, will fill in when I get time---

Sunday, January 2, 2005

Here's a photo of George, five days old:

Looks a little alarming, but actually things are going well. The eye mask and blue lights are part of phototherapy for his bilirubin levels. The respirator tube, feeding tube, and IV lines are all normal for a preemie at his age and stage.

Saturday, January 1, 2005

Happy new year! We spent new year's eve holding hands with George up at the NICU. It was inspiring to see a large number of parents there. The staff handed out sparkling grape juice, and we all toasted the stroke of midnight.