Jason: August 2003 Archives

Matthew's still doing great... He's eating and pooping with the best of them. He's up to 32ml every three hours now, which is still slightly lower than the ideal (160ml/kg/day). The nurses have told us that once he was on full feeds, they could move above that point (he was at 180ml/kg/day the last time he was on full feeds), so we're hoping they'll be increasing his feeds soon.

The CPAP is really starting to give Matthew a little pig nose (you can see it in the first picture yesterday pretty clearly), so we're trying to get them to switch him to another type of CPAP called Mask CPAP that has a little mask that fits over his nose. Hopefully it will take some of the pressure off of his nose and allow it to return to its normal shape.

Now that Matthew's doing so well, we're going to reduce the website updates to every couple of days. If there is any important news, we'll get it on the site right away.

Stinky Boy got his first bath today. 9 weeks of stank finally got washed off of the little guy, and he smells great. The nurse showed Jenn how to hold and wash Matthew, then Jenn gave him the bath. He really enjoyed his bath too. He was very alert and relaxed the whole time. After his bath, he got some clean clothes and I got to hold him for an hour or so while he ate and slept.

He's continuing to grow. He got to help weigh him tonight, and he put on another 20g since thursday. He's now up to 1616g (3lb 9oz).

    

Matthew is continuing to grow (though somewhat slowly this week). He was up to 1596g (a little over 3lb 8oz) as of thursday night.

Matthew's eye exam results have come back. Although we haven't talked to the doctors yet, they did say that his left eye only shows a mild change, but his right eye shows a moderate change. We don't know yet whether a moderate change is something to be concerned about or not.

Matthew's been on CPAP for over a week now. He's still desating occasionally, but generally keeping his O2 sat in the high 90s. Up until now, the doctors wanted to keep his O2 levels between 88-94%. Now that they know his eyes are having a little trouble, they want to keep him on higher levels of oxygen (94%+).

Matthew's really starting to get his baby fat. They haven't weighed him yet tonight, but he's clearly continuing to gain weight. He was up to 20ml of breastmilk every 3 hours earlier today, and continuing to poop and pee regularly. They've taken him off his IV nutrition (although he's still receiving extra fat via an IV). As long as he continues to tolerate his feedings, they'll be stopping the IVs completely sometime tomorrow.

Matthew is still doing great. He's on room air virtually all the time, and rarely desats anymore. He's been stooling a fair amount lately, and they're continuing to increase his feeds (14ml as of the last feed).

He's up to 1550g (3lb 6oz), which is exactly double his birthweight. By the way, if you haven't used Google's calculator before, you should really check it out; it's very cool. Go to www.google.com and search for 1550 grams in ounces or 1 foot in lightseconds.

Matthew made it past the 48 hour mark today (60 hours as of this entry), and is doing great. He's on room air most of the time, and hasn't had any significant desats. I got to hold him tonight for about half an hour, and he just loved it. He was so zonked out that he didn't even wake up when I put him back in his bed.

Matthew continues to gain weight. He was up to 1520g (3lb 5oz). They also increased his feeds to 6ml every 3 hours, and the plan is to increase it 1ml every 12 hours. His primary night nurse Madhu thinks this is a little conservative though, so she's going to ask the doctors if his feeds can be increased more rapidly.

Matthew was moved out of the isolet today and into a rocker bed. This bed slides forward and backward while rocking from side to side. It also makes noises that are designed to simulate the sounds that a baby would hear if it were in the womb.

Matthew is still on CPAP today. He's been on 32 hours as of this writing, well on his way to the 48 hour mark that the doctors were hoping for. He's doing so great on it that it's almost a certainty that he'll be staying on it for a while. When I stopped by earlier today, he had been on room air (21% O2) for most of the day.

Jenn got to do skin to skin this afternoon for about 45 minutes. Matthew did extremely well. He was on approximately 25% O2 while she was holding him and his heart rate, respiration rate, O2 sat, and pCO2 were all basically perfect.

Breathing: Matthew was extubated today around noon. He's back on CPAP and so far doing well. The doctors said that the first 48 hours is really critical. If babies make it past that point, it's generally smooth sailing. In case you haven't memorized this entire site, here's a quick recap on his breathing history. He's been on a ventilator virtually 100% of the time since he was born about 8 weeks ago. He's spent about half the time on a conventional ventilator, and the other half of the time on a high frequency ventilator. He's been on CPAP twice during that time, but only lasted 9 hours the first time and only 5 hours the second time. He's quite a big bigger now than he was then, so we're hopeful that the third time's the charm. He definitely doesn't seem to be working as hard this time as he has been, so it's certainly a possibility.

Eating: Surprisingly, they also resumed his feeding today. They've started him at 5ml every 3 hours, but will probably quickly ramp him back up to full feeds as long as he doesn't show any negative signs. They told us before that full feeds for a preemie is 160ml/kg/day, but before they stopped the feeds the last time, he was being fed more like 180ml/kg/day. Given his current weight (as of two nights ago), that would be more like 32ml every 3 hours.

Crying: Now that Matthew's been extubated, you can hear his little vocal chords. He can't get much volume yet, but at least he doesn't look like a mime crying anymore.

Matthew is up to 1410g (3lb 1.5oz). Since he's growing so much and his infection is almost gone, they're currently planning on resuming his feedings tomorrow after the doctors make their rounds. They will start at a reduced level and then increase them until he's back to full feeds. They're also planning on extubating him this weekend.

Matthew continues to be about the same. His CRP levels continue to fall, so they're talking about resuming his feedings on friday and extubating him on saturday or sunday. They took his skin temperature probe off today since he's doing a good job at maintaining his body temperature. They usually don't do that until the babies reach 1500g (he's only 1360g or about 3lbs). This means we'll finally get to start putting some clothes on him.

They've started giving him a steroid inhaler to help alleviate swelling in his lungs. This should help his transition off of the ventilator.

We got one of the first insurance statements today for Matthew's stay in the hospital. For 7/6 through 7/20 (2 weeks), Matthew's bill was just shy of $250,000. The cost of his care will certainly go down during his stay (as the required amount of care, medication, surgery, etc. go down), but it's almost certainly going to top $1MM.

Matthew's still doing about the same. His blood tests indicated elevated CRP levels, so they are continuing the antibiotics. He's lost a bit of weight now that he's back on IV nutrition; he's down to 1304g (2lb 13.5oz). He's had fewer bradycardia episodes today, and his oxygen requirements have been lower. They may try to start his feedings back up later in the week (even while he's on antibiotics) if he continues to look stable.

Matthew's doing about the same today. He's still up and down on his oxygen, and he's still having apneic episodes. They've upped the breathing rate on the ventilator to 20 breaths per minute to help him stay oxygenated. His feedings are still on hold until they know what's going on with his digestive system. They sent off blood for some labwork and have started him on antibiotics again. If the labwork comes back negative for an infection, they'll stop the antibiotics; but if it comes back positive, they'll have a jump on treating it.

Matthew had another setback today. He started having residual on his feeds, and increasing Bradycardia episodes. He was also having tachypnic episodes (rapid breathing rate) where his breathing rate jumped to over 100 breaths per minute. Needless to say, they didn't extubate him this morning.

They ran some tests on his stool recently and found evidence of internal bleeding. His residual hasn't had any blood in it, so the blood is likely coming from his intestines. His residual today was green however which indicates that his intestines are backing up, causing bile from his small intestines to get pushed back into his stomach. They've temporarily suspended his feedings until they can figure out what's going on. Unfortunately, all of these things are symptoms of NEC. They haven't determined conclusively if he has NEC (these could all be unrelated symptoms), but they're certainly concerned about it.

Matthew had his eye appointment with the doctor today. Premature babies often get something called Retinopathy of Prematurity (ROP). This is where the blood vessels in the retina can develop abnormally and actually grow away from the retina into the center of the eye. This can cause vision loss and can even cause blindness in severe cases. They rate the development of ROP by specifying the stage and zone. Stage 0 is no abnormality, stages 1-2 are minor (usually no vision loss), and stages 3-5 are serious and can result in severe vision loss. Zone 1 is the center of the visual field, zone 2 is the transitional region between the center of your visual field and your peripheral vision, and zone 3 is your peripheral vision. Matthew had stage 1 development in zone 2, so this is great news. The doctors were actually surprised at how little retinal damage he had. Though it can still get worse (they will be repeating the test occasionally through the end of October), it likely means he will have normal vision.

He went up on his feedings again today. He is now getting 28 ml’s every 3 hours. So far he has had a little bit of residual, but it looks like he is tolerating it pretty well. He's weighing in at 1340 grams (2lbs, 15oz). He'll probably pass the 3lb mark this weekend.

In addition to the previous prayer requests, please pray that his vision doesn't get worse.

Thanks so much for the comments that all of you have left. Sorry we haven't had time to respond to each of them. It means a lot to us that all of you are going through this with us.