Matthew is definitely looking bigger these days. He's up to 1116 gm (2 lbs 7 ozs) as of last night; but he hasn't stooled in over 30 hours, so part of it may be from the excess fluid. They've increased his feeding level to 9 ml every 3 hours, and so far he's had little residual.
He's on the lowest possible ventilator settings, and he's been or room air basically all day, so his lungs are clearly doing very well. He doesn't desat like he used to when you talk to him or when you touch him. They're talking about putting him on CPAP again in the next day or two, and since he's so much larger than the last time they tried it, I expect him to do much better this time.
Jason: July 2003 Archives
They've increased his feedings to 6 ml every 3 hrs this morning. He still hasn't had a stool in about 36 hours, but they're going to wait until later today before giving him a suppository.
Matthew was relatively stable today, but his O2 requirement was up and down. His pCO2 was also a little high today, but not high enough to alarm the doctors.
They didn't increase his feeding level today since he was having small amounts of residuals. These decreased toward the end of the day, so they'll likely increase his feeding level tomorrow. He didn't have any stool today, but they think it may be due to the low level of his feedings.
They started feeding him again today!!! They started at 3 ml every 3 hrs, and so far there's only been a small amount of residual at each feeding. As long as there is little to no residual (and as long as he keeps pooping), they're going to increase his feedings 3 ml per feeding each day until he reaches 21 ml every 3 hrs (6 ml per feeding on saturday, 9 on sunday, etc.).
Everything else is basically the same. He's still fairly stable; only requiring 21-25% O2 most of the time. We didn't get to hold him tonight because he had a temporary nurse. So far, every time we've held him it's been with the same nurse. She's not on this weekend, so we may not get to hold him again until early next week.
Matthew is also still gaining weight. He's up to 1090 g (2 lb 5 oz).
Matthew was moved into an isolette this afternoon. He has been on a table until this point because he needed to be watched so closely and because the doctors and nurses might have to jump in at a moment's notice to deal with a problem. Now that he's stabilized, the isolette provides him a quieter environment in which to grow. The isolette provides a temperature controlled environment for him until he's got a layer of baby fat and can regulate his body temperature himself. Once he's about 1900g, they'll move him to a bassinet until he's ready to go home.
When they upped him to 9ml every 3 hours, they were finding residual breast milk during subsequent feedings. They cut him back to 8ml every 3 hours for most of the day; but since he still hasn't had a bowel movement on his own yet, they actually stopped his feedings this evening. They've given him an enema and a suppository (his fourth actually) to try and relieve his constipation.
Matthew didn't have any residual food in his stomach all day, so they're increasing his food levels again. Over the next three feedings, they're stepping Matthew up to 9 ml every 3 hours. That will be over 50% of his total fluid intake (currently 5.6ml/h).
Jenn got to hold Matthew again tonight. He slept most of the time and didn't need as much additional oxygen as last night, which means he's getting more used to being held. Since they went up on the feeding, I didn't get to hold him tonight, but hopefully I can tomorrow.
We spoke with the nurse that was removed as his primary night nurse. She was very understanding and said that she would have done the same thing if Matthew were her child. She apologized for being so flippant. Though she won't be his primary again, it's possible she may take care of him at some point as Matthew moves from a 2 to 1 baby to a 3 to 1 or 4 to 1.
Overnight, they increased Matthew's feedings to 7 ml every 4 hours. This morning, they increased them again to 6 ml every 3 hours. During the last couple of feedings, they've found a small amount of residual food from the previous feeding (0.5 ml or so), so they've probably found the right level for him for now. He also grew a little from yesterday to 1020 grams (approximately 2 lbs 4 ounces) Reminder... he was born at 1 pound 11 oz. We haven't been down to see him today, but the nurse said he's still pretty stable. We're looking forward to holding him again tonight.
Matthew has had several feedings today, and all have gone very well. He had his first feeding at noon today, and at 1:35, they checked for residual and found none. If he's still doing this well tomorrow, they will probably increase his feeding to 5ml every 4 hours or 4ml every 3 hours.
As of yesterday, Matthew is no longer a 1 on 1 baby. Up until this time, he's had his own nurse 24/7. Now that he's more stable, his nurse will be taking care of him and one other baby.
Matthew officially crossed the 1kg mark today. That's up nearly 33% from his birth weight in less than 4 weeks (They told us early on that babies this young often take 4 weeks just to reach their birth weights again).
Matthew had his first feeding today at around 6 p.m. They gave him 2cc of Jenn's breast milk, and he will receive 2cc every 6 hours as long as he responds well. Basically, at each feeding, they pull out the entire contents of his stomach through the feeding tube to see what's going on in there. As long as the contents aren't green or bloody, they push them back in and add 2 additional ml. They're on high alert for NEC, and if there are any signs that something is wrong, they'll stop the feedings.
They took Matthew off the Jet today for about 40 minutes, but he wasn't doing well on the regular ventilator so they had to put him back on the Jet. They also upped the breathing rate from 300 to 360 breaths per minute for about 4 hours and then dropped him back to 300. His pCO2 levels have stabilized, but now his O2 sat is jumping around. They haven't been as quick to change his O2 levels on the vent when he desats as he usually recovers pretty quickly on his own.
The Lasix appears to have worked. He's urinating much better and he looks quite a bit less puffy. The chest x-rays today showed a little less fluid in the lungs too. They haven't weighed him in a couple of days, so we don't know exactly how much excess fluid he's got right now.
Matthew is three weeks old today. That seems like a short time when you think about it, but it seems like forever ago that this all started. We really appreciate all of the support and comments we're receiving. It's nice to know that so many people are following along with his progress.
Matthew is about the same today as the past day or two. His blood gases have been pretty stable other than when he's touched too much or when there is too much noise around him. The doctors have had to increase the pressure on the ventilators a bit because they couldn't get his pCO2 levels down. His O2 sat is great though on nearly room air (~25-30% O2). His belly is down a little more today, probably because he's still urinating quite well. They weighed him last night and he weighed 960g. They don't expect him to really be above his birth weight until he's around four weeks old, so this is probably still high due to fluid retention.
They were considering giving his some breast milk this morning, but they were unable to hear any bowel sounds (which would indicate his bowels are not ready to start processing food), so they've decided to hold off for a bit. They may try tomorrow morning, but it doesn't seem likely. The doctors are being extremely cautious with this because there is the risk that he can develop Necrotizing Enterocolitis (NEC). This is a very serious condition, and the fact that he's had a belly infection already increases his odds that he will develop NEC.
Matthew's conditioned worsened a little over night. They had to go back up on the Jet ventilator settings to levels above where they were before the surgery. Fluid is continuing to collect in his belly, and his urine levels have dropped significantly. They used a needle to withdraw about 60ml of fluid from his belly, which relieved some of the pressure on his lungs. This helped with his respiration, allowing them to come back down on the ventilator settings.
He's still receiving Dopamine for his blood pressure, but they've also started giving him Dobutamine to help maintain it.
In the afternoon, his urine level started increasing again which is a great sign. They've increased his fluid levels to provide him with more nutrition. His blood gas numbers improved dramatically during the day, allowing them to reduce the ventilator settings as well as reduce the oxygen level in the air he is breathing. By 9 p.m., he was on almost the lowest settings on the Jet and was breathing room air. Though he's been on room air from time to time in the past, he was never on it for very long as the nurses were always chasing his blood gas levels with the ventilator settings.
Matthew's surgery was a complete success. It went very smoothly, and there are already signs of improvement. The whole procedure took about an hour from prep to cleanup, but the actual surgery only took about 15 minutes. They made an incision under his left arm about 1 cm long. They spread his ribs (which are quite flexible in a baby this young) and went around behind his left lung. They put a small metal clip around his PDA to pinch it closed. Fortunately, there were no surprises. In fact, the doctors didn't see one drop of blood during the procedure (internally I assume).
After the surgery, the doctors noticed an immediate improvement with his pCO2 (partial pressure of carbon dioxide). It had been in the 40s to 50s most of the time (with occasional excursions above 100), but after the surgery they had a hard time getting it above the 30s (basically his body was doing too good of a job getting rid of CO2). They don't want his O2 or CO2 levels too high or too low since either can cause problems. They came down on his ventilator pressures and breathing rates to help with this.
Although things look great now, it will be a few days before we know if there are any complications. There are no common complications, but there are a number of things that can occur in a small percentage of cases.
We got a chance to measure him tonight. He's grown a bit since birth. He's now 13 2/3" long.
The PDA surgery is scheduled for tomorrow. While it's scary to know your child is going into surgery, I'm relieved that it's finally happening. Once his PDA is closed, a lot of things should start to improve. His blood oxygenation should improve significantly, which will allow them to start feeding him breast milk. Once he starts feeding, he should gain weight much more rapidly. Once he starts gaining weight, he should have the muscular ability to breathe on his own. Once he's breathing on his own, his lungs and throat should improve since they won't have the ever-present irritation of the intubation tube. Once his lungs and throat improve, he'll be able to cry. Once he's crying, he can start talking. Once he starts talking, he can go to school. Once he goes to school, he can get into college. Once he graduates from college, he can go to medical school. Once he graduates from medical school, he can earn enough money to pay us back for all this...:-)
Matthew is looking about the same as yesterday which is good. His white blood cell count is a little high still, so they're going to keep him on antibiotics through the surgery. That's probably a good thing anyway since it can lessen the likelyhood that he'll develop an infection from the surgery. The surgury is scheduled for the late afternoon, so we probably won't have an update on the site until late tomorrow night.
Matthew definitely looks better today. They gave him Dopamine last night to increase his blood pressure, and it's made a noticeable improvement. The increased blood pressure helped reduce the discoloration around his eyes and belly, as well as helped reduce his fluid retention so he doesn't look as puffy as he did yesterday.
He's also much more active again today. This is probably largely due to his infection subsiding; but whatever the reason, it's good to see him so active again. He's moving his arms and legs quite a bit, and he even opened his eyes a couple of times.
Matthew looked about the same today, but the nurses said he looked better to them. They did have to put him back on the Jet, but they've come down a bit on the breathing rate (though they did have to go up a bit on the pressure). He's still extremely sensitive to sound and touch; you can really see how it affects him when he's touched too much or when people are talking too loudly.
The doctors and nurses are still confident that he'll be well enough for the PDA surgery on tuesday. We've been told several times that once the PDA valve has been closed, we should see much more dramatic improvement.
We didn't go down last night to meet with the night nurse because Jenn wasn't emotionally ready to deal with her. Jenn's much more relaxed though, knowing she isn't taking care of Matthew.
When we visited this afternoon, Matthew was looking much better (better than he's looked in a long time). His color has improved dramatically and he's becoming a bit more active, but not quite like he used to be. It appears the antibiotics are taking effect.
When we visited late in the evening, his blood gas numbers were all out of range and moving rapidly. One of the respiration therapists came and suctioned out his mouth and throat. The doctors also ordered another chest x-ray to determine the position of the breathing tube as well as examine the state of his lungs. The x-ray confirmed that the breathing tube was in the right position, but his lungs are still quite immature.
