Bottles

Jamesie had a great day -- he took three bottles with more than 40 ml in them from his nurse! (He was pretty sleepy when I tried to feed him, and only managed 8 ml, but that's okay.) They're running his feedings over an hour and a half now (down from two hours), and he seems to be tolerating that with no problem.

James and his dad both had eye exams today. (Mike's was probably less painful!) James's eyes look fine, although there's one little spot they want to follow up with to make sure it develops properly, so he'll have a follow-up in three months.

Matthew went on some errands with us today; we're glad he sleeps so well in his stroller!

More Shots

James got his four month vaccinations today, a process that was no fun for either him or his nurse. When we arrived, he'd been sleeping since he got the shots. He woke up long enough for me to tell him that mommy didn't like shots either, but they were all done now so he could relax. Then he went back to sleep.

He's up to 80 ml on his feedings; I think the plan is to go up to 83 tonight (or maybe tomorrow). Still doing fine; a little spit-up, but nothing more than the usual baby stuff.

Matthew was a delight this morning; he was all smiles! He also seems to be more interested when we read him books these days. (We tried reading to him earlier, but it seemed a bit pointless when he was clearly paying no attention at all! These days, he at least seems to like the sound of our voices when we're reading to him, and occasionally looks in the direction of the book.) And he had a wonderful time with his former primary nurse at the NICU today -- she walked him out into the hall where he had a "conversation" with the painting of kitty cats on the wall. (Sorry, Mattie, this is a dog family!)

Requirements

We asked the doctor today what needed to happen before we could spring James from the Big House. Here's the answer:

1. They want to get him up to full feeds, which is now 83 ml every three hours. ("Last week it was 75!" "He's bigger now.") Assuming he keeps doing as well as he's been doing, this should just be another day or two.

2. After they get him up to the volume of feedings they want, they'll start transitioning him to taking it over a shorter period of time (moving toward a half-hour). But some of this transition could happen at home.

2b. They might also try to transition him to regular formula (or maybe breastmilk). The special formula he's on costs more than twice as much as regular formula and is not covered by insurance (although we're going to appeal that decision if he needs to stay on it).

2c. Of course, they're also still working with him on bottle feeding, but this isn't a requirement for discharge, since he has the G-tube. (I wouldn't be surprised if doing the feedings over a shorter period -- one hour versus two hours, for instance -- helps with his bottle feeding. I wonder if right now he just doesn't have a chance to really get hungry, so he's not as motivated to bottle feed.)

3. They want to make sure his bilirubin is going down. (I think they'll take the next one on Thursday.) It went down between the last two readings, which is a good sign, but if it isn't continuing to go down they'll want to do some additional tests.

4. They want to get his blood pressure under control. It seems to be better with his current medication, but it's not all the way there yet.

5. He needs to have a kidney flow test called a VCUG, which they do for all kids who have urinary tract infections, to make sure urine isn't going backwards into the kidneys. (Apparently there's a treatment if there is this backflow, but we don't know any more about it.)

6. On Friday, he'll have some minor surgical procedures -- they'll replace his current G-tube with a smaller "button" version, remove some of the excess tissue that caused the bleeding at his ostomy site, and do his circumcision. He won't need to be on the ventilator or anything for these, even though they do them in the operating room.

So, although that looks like kind of a long list, it's really not too much, as long as everything continues to go well. Keep your fingers crossed! (I am still holding my breath.)

Jamesie was doing fine when we visited. His nurses said they got some smiles out of him this morning, and they got some smiles from Matthew too while we were there.

Picnic

James went up to 77 ml on his feedings today. (Apparently the new goal is 80!) Like yesterday, he had a little spit-up after the first increased feeding, but they gave him a little extra time to digest it, and he seems to be doing fine.

Mattie went with us to my department picnic today, and slept through it. It was a beautiful day to be outside.

(By the way , the prune juice seems to have worked for Mattie.)

Rainy Saturday

Jamesie's feeds went up to 74 ml today. He'd done fine with 69 mls, but the first feeding of the 74, he had a little bit of spit-up and seemed uncomfortable, so they only gave him half of the next feeding to give his tummy a chance to catch up with the higher volume. That seemed to help, and his night nurse told us he took a 25 ml bottle! (He was sleeping when we were visiting, so we just let him rest.)

One of the other benefits of getting rid of the PICC line is that he can have both his arms in his outfits -- before, the arm with the PICC line was left out so that the clothes didn't pull on the line.

Mattie tried something new today -- prune juice. We gave him a little bit for its digestive effects (which have not yet been evident). He's also been putting his hands in his mouth quite a bit, and even sucking on his thumb a little. Very cute!

Mike and I got our flu shots today, as some extra insurance in case our plan of "avoiding sick people" doesn't work.

Long Awaited

Great news -- James is no longer on IV fluids! (Goodbye to the TPN!) He's up to 69 ml on his feedings (or 23 ml/hour), which is not quite up to the goal yet (75 ml or 25/hour), but is close enough that he's getting adequate nutrition and hydration with it.

This is wonderful news for two reasons. First, being off the TPN will allow his liver to recover, and second, they have taken out his PICC line, the IV used to deliver the fluid. Although James has had a PICC line for a long time, they always worry about them as a possible portal for infection, so getting rid of it removes a possible risk for him. (Of course, if needed they can always put in another one, but we're hoping that doesn't become necessary.) Getting rid of the PICC line will also make him a lot easier to pick up and move around. Hooray!!

It seems like we should throw a PICC burning party or something like that, but I imagine the plastic would smell pretty nasty if we tried to burn it.

We continued our educational activities today. We met with a nurse to learn how to use the home feeding pump that goes along with James's G-tube. Of course, the goal is to get him to be taking all his food by mouth, but it will probably take some time to get there, so the pump will allow us to make sure he's getting all his nutrition even when he's not fully transitioned to a bottle.

And we had another session with the ostomy care nurse; it was my turn to change the bag. James didn't seem to mind too much. :)

He had a little bit of spitup with blood in it while we were there, which was unsettling, but the doctors think it was just a little stomach irritation (which sometimes happens with the g-tube). He hasn't had any more since then, so that's a good sign. (If they had been worried, I suspect the PICC line would still be in.)

So, altogether a good day! (And after a terrible night of gas and fussiness, Matthew also seems to be feeling better today.)

They Grow Up So Fast

...our latest medical bill for Matthew was for services from the Adolescent Clinic. :)

Shots and Stones

The Barr grandparents hit the road early this morning. We were sad to see them go! (They were here for two weeks, but it seemed like no time at all.)

This afternoon Matthew had his four-month checkup at the doctor, which included some shots (which made more than one of us cry). He is doing fine, and for his developmental milestones, he's achieved some of the two-month ones and some of the four-month ones. It sounds like that's about what they'd expect for a preemie of his adjusted age, so they weren't concerned about anything.

James was also doing fine when we visited him. We heard he'd gotten a lot of cuddling in the morning. :) He's up to 63 ml on his feeds (which translates to 21 ml/hour). He's getting closer and closer to their goal! He did have a bit of spit-up when we were there, but it's hard to tell whether it's just normal baby spit up, or whether he's telling them that they need to slow down a little to let him get used to the higher volumes of food. (If he has more of it, they'll likely assume it's the latter.)

He took a 20 ml bottle early in the day (yay!), but then didn't quite finish his later bottle. But, it's still progress.

They did a liver ultrasound on James the other day, since his bilirubin and liver enzymes were elevated. I found out about this when I called at 5 AM a couple days ago for an update. The nurse wasn't quite sure why they were doing the ultrasound, so -- even though I knew better -- I Googled "liver ultrasound", which of course led to "cirrhosis of the liver," which of course is a rather grim diagnosis. And some of the symptoms of cirrhosis are edema (fluid retention), which he has, and hypertension (high blood pressure), which he has. The doctors have told us that while being on long-term IV fluids does put the liver under stress, the liver also has excellent healing capabilities, and bounces back after the fluid is stopped, unless it's completely damaged. "Oh no," I thought, "they're worried that his liver has turned the corner and won't be able to recover!" Well, later in the afternoon we found out that the liver ultrasound came back normal; his liver is fine. The doc mentioned that they thought the jump in his bilirubin levels was probably a delayed reaction to being off feedings for surgery, but that they just wanted to rule out any other problems, which they were able to do with the ultrasound. So, that was a relief. And his bilirubin levels today had started to come down (to 9-something from 11, which is at least in the right direction.) The moral of the story is, Step Away From the Google.

The ultrasound did show that he has some kidney stones, though. Being on Lasix and gentomyacin (an antibiotic) are risk factors for developing them, and he's had both of those. The blood pressure medicine they have him on now (hydroclorathyazide, or something like that -- I can never keep the name in my head) is actually the recommended treatment for dissolving the stones, so it's doing double duty. And they're not particularly worried about them at this point.

Our "educational" activity for today was emptying the ostomy bag, which was neither as disgusting as we expected, nor as easy to get everything out. But it's definitely in the "not a big deal" category.

The doc warned us that Matthew might be a little more fussy tonight after his shots, and alas, it seems she was correct. (The middle picture is Mattie at the doctor's office, and the bottom one is James.)

Education

Matthew had a nice afternoon with his grandparents today -- he has to take advantage of the attention while he can, since they're all planning to leave tomorrow (despite our campaign to get them to extend their visit).

Meanwhile, we went to the hospital to meet with the ostomy nurse to learn how to take care of James's ostomy and practice changing the ostomy bag. It's not the most pleasant task in the world, but it's not too complicated. He was having a little more bleeding from the ostomy while we were there, but the surgeon came by and cauterized part of it with some silver nitrate. (If I understood correctly, some of the mesentery, the tissue surrounding the intestines, was exposed and getting irritated.) So, hopefully that will solve the bleeding problem, but even if it doesn't, a little blood from the stoma site is not a big deal. (There aren't nerves there, so it's not painful for him.)

James is now up to 19 ml/hour of formula, and they've also switched him to two-hour feedings rather than continuous ones. So, he's getting 57 ml every two hours (which sure sounds like a lot!) Then there's an hour break before the next two-hour feed (that is, two hours on feeds and one off). Sometimes the transition from continuous feeds to more of a bolus (all-at-once) feed can be difficult, so we'll see how he does. It'll certainly be the largest amount he's had in his stomach at once! They're hoping that this change will make it easier to bottle feed him. The past day or so, he's only taken about 10 ml at a time from the bottle, and they think it may be because his tummy is already full from the continuous feeds.

17

James has been doing fine with his restarted feedings, now at 17 ml/hour. No more blood. And Matthew is doing fine as well.

[Photo is Grandma Georgia and Matthew from 9/19.]

Blood Brothers

Word of warning: today's entry is all about poop. So, if you're eating, you may want to come back later.

We took Matthew to his first non-routine pediatrician visit today. (Don't worry; he's fine.) Friday night (of course! the weekend!) we noticed that he had some blood smears on the poop in his diaper. He'd been having some diarrhea, so we thought maybe it was just some irritation, but this is one of those "need to see the doctor" kind of things. When we looked online, it turns out that most of the causes of bleeding like that are relatively minor, except one (intussusception, where part of the intestine telescopes in on another part), which is very serious (but also involves more severe bleeding than Matthew had). Since he was acting perfectly fine otherwise (no fever, no vomiting, etc.), we figured it probably wasn't anything too terrible.

The advice nurse said that although her computer system said that he should be seen within 24 hours, she thought it would be fine to wait until Monday (today). We took him to an urgent care place on Sunday anyhow for peace of mind, but they said they couldn't do any tests to figure out what it was, and said we'd need to go the E.R. for that. Well, since going to the ER would be likely to expose him to unpleasant germs, and because with our insurance the visit would cost a minimum of $200, we decided to wait. But it's really frustrating that just because this happened on a weekend, we have such limited options for getting him seen. Once the boys are a little older, I think we're going to switch to a pediatrician with better after-hours and weekend-hours availability.

Anyhow, we got a same-day appointment for today, and the doctor thinks he just has some kind of viral or bacterial infection that led to both the diarrhea and the bleeding, and either way, they don't treat those -- they just let them clear up on their own. And indeed, Matthew seems to be having less diarrhea, so hopefully he's on the upswing. The only thing she told us to do differently was to give him unfortified milk for the next week, to make things a little easier on his digestion (and of course, to come back again if anything seemed to be getting worse).

Then, when we called in to check on James this afternoon, they told us that they had stopped his feedings because he'd had some dark-colored blood coming out of his ostomy. However, he wasn't showing any other symptoms of anything being wrong -- all his vital signs were fine (except for his usual high blood pressure), he wasn't overly fussy or lethargic, his bowel sounds were okay, and so on. (I visited him for an hour and a half or so after Matthew's appointment, and he didn't seem to be in any distress.) So, they didn't seem particularly worried about it being something serious, but they don't really know what's causing it. When we just called to check in, the surgeons had been in to look at him, and they seem to think it might just be some irritation to his ostomy. He'd had some red blood yesterday that they thought was ostomy irritation, but it seems like it would be a little strange for that to cause darker blood. But the last time they checked his output, there didn't seem to be blood there, so the surgeons are recommending restarting his feedings. Hopefully it's just something minor that will go away; we'll see.

UPDATED 10 PM: They're planning to restart James's feedings at 10 PM, at the same level he was at (16 ml/hour). We'll keep our fingers crossed!

Also, at the appointment today, Matthew weighed 9 lbs, 4 oz! (That's a little inflated because he had his outfit and diaper on, but still -- over 9 pounds!) The pediatrician who saw him had done a rotation in the NICU when he was there. She was on the "other side" (Pods A, B, & C), but she had taken care of him a few times and remembered him. She was very happy with how big he'd gotten. :)

Strollin' in the NICU

Both of the brothers were in their strollers today! And Daddy got to feed James a bottle for the first time. James is up to 15 ml/hour, another record for him. (Apparently their goal is now 25 ml/hour. Seems like a lot to me, but I guess they know what they're doing!)

Mattie and James say Happy Birthday to Grandma Green!!

Repeat

James had another good day. Grandpa Green and I got to take him for another stroller ride. He was fussy when he first went in the stroller, and went through about four pacifiers in as many minutes -- he couldn't keep them in his mouth and they fell on the floor! But once he settled down, he enjoyed the outing. I also fed him another bottle (13 ml). He coughed a couple times right at the start, and then got into the swing of things and did well.

Jamesie's Day Out

Jamesie had an exciting day today -- he got to go on his first stroller ride! Grandma and Grandpa were able to wheel him around on a tour of the NICU. (No, he didn't get to go outside the hospital yet, but at least he was able to have a change of scenery from Pod F.) He was accompanied by his IV pole, but hey, we'll take what we can get. :)

I also fed him a bottle for the first time today. He did a great job. He drank all 10 ml, and although I was pacing him (tilting the bottle back after every few sucks so that he didn't get too much milk at once), he was basically doing a good job of pacing himself. As his nurse explained, he needed some pacing at the start to realize that the bottle wasn't a pacifier ("whoa, there's milk here!"), but after that, he did well. Very exciting!

Strollers and bottles are things that most parents take for granted, but for us, they seem like a wonderful gift.


James is up to 11 ml/hour on his feedings, and still doing fine. They also started fortifying it with a few extra calories (to 22 calories). I'm a little nervous about this since fortification can make it harder to digest, but we'll see how it goes.

And since Mom and Aunt Ann want a poop report, that seems to be fine, too. The docs know how much is too much, and he's definitely not doing that, but they don't really know how much to expect to tell whether it's too little. But he's putting some out on a regular basis, and he's not throwing up or having a distended belly, so they're happy with it.

Equal Time for Grandma

Here are a couple of photos from this morning of Grandma Georgia and Matthew.

Jamesie took a 10 ml bottle this morning (yay!), and continues to do well with his feedings. He's probably somewhere around the halfway mark for the amount of feedings they want to give. Before his surgery, they had been aiming for 15 ml/hour, but now he's a bit bigger, so we've been hearing anything from 18 to 22 ml/hour as the goal.

Little Squirt

Matthew's morning didn't get off to the best start -- he managed to squirt himself in the face during a diaper change, and had to be promptly put in the bath! But then he made up for it by getting some grandparent love.

Jamesie's feeds are up to 8 ml/hour, and so far he's doing well with them. When we called this afternoon to check in, his nurse was reading him a book. :) We're off to visit him now.

11 PM update: James took a 9 ml bottle this evening! He's now allowed to have bottles up to three times a day (with the rest still through the tube). Grandpa Green, Mike, and I had a very nice visit with him. They also removed his respiration and heart rate monitors (though they still have his pulse oxygen monitor, which also records heart rate). It's nice to have at least a couple fewer wires to contend with!

Grandpa Central

Matthew is enjoying the company of both of his grandfathers. (And they are enjoying his company, despite his occasional attempts to stink them out.)

Jamesie did well with his bottle again today (6 ml this time), and he's now up to 7 ml/hour on his feedings. So far, so good. He was awake when we arrived, and then had a nice nap on Daddy's lap.

Flat

Jamesie had another bottle today -- 5 ml this time. They tell us he enjoyed it! They've increased his feeds to 5 ml/hour, and the new plan is to increase them by one ml per hour every shift (so, every 12 hours). The idea is that if he does well with it, he'll be up to full feeds more quickly, or if there are more problems, they'll be able to know that more quickly as well. So, keep your fingers crossed! (It's a little nerve-wracking!)

We were on our way into the hospital today to visit James, and we hadn't even made it to the end of our block when we discovered we had a flat tire. Ugh! At least we were able to go home instead of being stranded or changing a tire somewhere else, but we (by which I mean Mike) spent the afternoon getting tires replaced instead of seeing our baby.

Four Months

It's the babies' four month birthday today! Hard to believe. Matthew worked on his camoflage skills today (see picture), and James is getting his hands near his mouth, but apparently has decided that his thumb is not an adequate substitute for his beloved pacifier. (Matthew also moved up to Size 1 diapers today, but that was mainly because we finished off the box of newborns and had a box of Size 1s -- which are for babies 8-14 lbs -- available. Thanks, Auntie Nora!)

They increased James's feeds today to 4 ml/hour, and he's doing well with it so far. They're trying him on a new blood pressure medicine that also acts as a diuretic, so that hopefully they won't have to continue giving him Lasix for fluid retention. (Before his surgery, he was able to even out on his own after he'd been on the 5 ml/hour feedings for a while, so probably the same thing will happen this time once he gets to some higher volumes of food.) And his bilirubin went down to 8, which is still high but moving in the right direction.

The other night, James's nurse told us that he had been in the NICU the second-longest of all the babies currently there. (Not just in Pod F, but the whole NICU.) Ouch!

Sunday with the Grandparents

We think we may have seen a real smile from Matthew! I thought he smiled at Grandpa and me last night, but I wasn't going to believe it until he did it again -- and then this afternoon he smiled at Grandma! (So far the smiles are fleeting, but beautiful.)

We've gotten a couple of reports from the nurses that James has smiled at them, too.

Jamesie is doing well. They increased his feeds just a smidge, to 3.5 ml/hour. He was sleeping when Mike and Grandpa visited, but Grandma got to hold James for the first time. (Admittedly, he mostly just slept in her arms, but he looked very comfortable.)

More Grandpa Love

Matthew has enjoyed spending time with Grandma and Grandpa Barr (although Grandma Barr has had no more success getting him to sleep in his crib than we did!) We went in to visit James last night, but he was sound asleep, so we didn't stay too long.

Matthew also had a good night of sleep (in the car seat in the crib) -- we put him down around midnight or 12:30, and he slept all the way until 5:30. He woke up and fussed a little then, and he probably would have gone back to sleep with his paci, but I was sure he must be starving so I got him up to feed him. (In fact, he didn't seem to be starving, so next time I'll let him go back to sleep!)

I visited James today for a couple of hours while Grandma watched Matthew. He's still doing fine with his feedings (3ml/hour); he had a little spit-up this morning, but only a tiny amount after he got mad, so they're not concerned. He's been a little more fussy than usual recently, but his nurses think it's because he's bored (or because he wants his pacifier but isn't good at keeping it in his mouth by himself -- it seems like he's very close to getting his thumb into his mouth, so maybe he'll discover that soon and it'll substitute for his paci.). I suspect they're right about him being bored -- he seems very aware of his surroundings, so I can see why he would want a change of scenery! (It reminds me of being on hospital bed rest. Even with TV, the Internet, and visits from Mike, I was still going a bit stir-crazy.) That makes us all the more eager to get him home, but of course we don't have any choice but to be patient. Or in his case, to be a patient. :)

Go Gators

Gator James is ready for game day!

Grandpa Love

Grandpa Green had a good visit with his grandsons! Now he's headed up to visit his other grandson, and the Barr grandparents have arrived in town.

Jamesie had a good day -- he drank some formula from a bottle! They even used the regular bottle rather than the Bionix bottle. Of course, he was only allowed to have 3 ml (a tiny amount), even though he wanted more. It's a good start, though.

PM Update

Some car troubles delayed Grandpa Green's arrival, so we didn't make it in to the hospital this evening -- by the time we finished dinner, it was getting late and everyone was tired. When we called to check on James, his nurse was holding him, so we're glad he's getting some TLC despite his neglectful parents. He's still doing fine, and even had some yellow (rather than green) poop, which is a good sign that he's digesting his formula.

Matthew expanded his culinary horizons by sleeping through a meal at the Indian restaurant.

No Changes

James is continuing to do well, although both his night and day nurses reported that he'd been awake for a long time, so hopefully he'll decide to get some sleep soon! He's been tolerating his food so far (still just the 2 ml/hour), and having some "output" from his ostomy, which is good. We'll probably go in to see him tonight, after Grandpa Green arrives.

Matthew is also doing fine. If he had any balance, he could stand up by now -- he holds up his weight on his legs really well. (As the house is not babyproofed yet, we are just as happy that he won't be standing on his own for a while.)

With the sad but probably inevitable closing of our local video store, we've finally caved in and joined Netflix. (There are only so many episodes of Cash Cab, What Not to Wear, and the Golden Girls that you can watch in the middle of the night while burping a baby.) Recommendations are welcome, especially for TV series or movies that can be watched in 20-30 minute segments without ruining them. :)

[In the photo -- no, Matthew isn't sitting in a high chair yet; that's left over from Cousin Daniel's visit.]

Flower Child

Matthew's nephrologist decided that he doesn't need to have the home nurse come check his blood pressure any more, since his pressures have been very consistent since he's been home, and he's been gaining weight. We liked the home nurse, and Mike is a bit disappointed that we won't be able to keep as close tabs on Matthew's weight gain, but it's nice to have one less thing to manage.

James had another good day. We went in tonight, and he was awake watching his aquarium. He was feeling well enough that I got to hold him for a while, which was great. (His nurse was impressed at how much progress he'd made in two days!) They started his feedings at around 3:15 this afternoon at a very low level (2 ml/hour, continuous). So, by the time we were there he'd only had the equivalent of a few mouthfuls, but so far, so good. His bilirubin levels had gone up (to 10), which was disappointing, but if he's able to go back up on his feedings, those should start coming down again.

Jamesie Feels Better

When we first arrived for our visit this evening, Jamesie was off of his cannula and back on regular "room air". Then he got mad about something and held his breath, and had to have the cannula back. But by the time we left, he'd been moved back into his regular crib (instead of the warming bed they had him on after surgery), and was doing fine without any breathing assistance.

In addition to getting the replogle (stomach tube) out, he also had a couple of IVs removed (the PAL that gave real-time blood pressure readings, and another one that they used for blood transfusions.) I'm sure that felt good as well.

He also had a new toy -- an aquarium that lights up and plays music. He likes to look around, so I'm sure he'll enjoy having something different to see!

Most likely they'll start feeding him a very small amount tomorrow.

Breathing Easier

They took James off the ventilator a few hours ago, and he's doing fine. (They put him on a nasal cannula just in case he needed it for the transition, but he's on a low level of support from that, so he doesn't seem to be needing it much at this point.) They also discontinued his fentenyl, and his nurse says he doesn't seem to have noticed that it's gone, and that he seems very comfortable. Yay! It seems like just having that tube in was causing him a fair amount of agitation.

I'm breathing easier now that he's extubated, too. Even though I know that our NICU staff are experts in resucitating babies, the episodes of him clamping down on the tube (or having the tube get clogged) and essentially (temporarily) suffocating himself were pretty unsettling. My parents tell me that when I was a baby/toddler, I would hold my breath when I got mad, but the doctor told them that I wasn't going to hurt myself doing that -- but in James's case, I'm not so sure that was true! Anyhow, we're all much happier now.

He still had the replogle (tube down his throat to suck secretions, etc. out of his stomach) in when we last called, but the surgeons said that it could be taken out as well. I'm sure James will be glad to have that gone, too!

He's continuing to have some stool output, so the surgeons and the neonatologists will be making a plan about when to restart his feedings.

Meanwhile, here at home, we are playing exciting games such as "Can We Finish Eating this Meal Before Matthew Wakes Up?"

Labor Day

One day for us is a lot like any other; it's mostly babies and hospital. We did appreciate that there was free parking at the hospital for the holiday, though! (The hospital parking garage recently both raised their rates, and eliminated the discount pass for relatives of people who are hospitalized for long periods of time. So, our daily parking expense went up from $4 a day to a maximum of $8 a day. That adds up, and it's also grating because it seems to add insult to injury --bad enough to have a kid in the hospital for months, but we have to pay to see him! If we win the lottery, we'll establish a NICU parking fund.)

James was zonked out for most of our visit this afternoon. They were trying to wean him off the ventilator, but he wasn't quite ready yet -- he was doing what they call "riding the vent", which means that he was letting the machine do the work for him, and not breathing more frequently on his own. He was moving around and waking up more as we were leaving, though, and the most recent report was that he had been awake for about three hours, and was breathing over the ventilator more then. So, that's good.

The new stoma (the ostomy opening) has prolapsed a little, which means that a little more intestine has come out. (The stoma is usually just the tip of the intestine.) We don't know what they'll want to do about that yet. On the brighter side, he did have a tiny bit of stool coming out, which is good because it means that the stoma is open and that there's some bowel activity.

Photos to bring a smile to your face

James had a decent night. He doesn't like the ventilator tube down his throat so he clamps down on it, causing alarms to ring and his oxygen saturation to drop. The Ativan is supposed to help reduce this anxiety without using a narcotic such as fentanyl. The plan is to get him off the ventilator as soon as possible, perhaps later this afternoon or this evening.

<-- The sugar cookies pictuered here are delicious; they are also expensive ($2.69 each) and they are made in California. Every time I buy one I wonder why someone in Chapel Hill doesn't bake these cookies. It couldn't be too hard, and you could probably sell them for less. And you would be supporting a local business. I wish I knew how to bake and had a more entrepreneurial drive.

Stanley is a fuzzy happy dog (most of the time). Last night he brought up his barbell to remind me that it was time to play. Usually we play ball but I had been ignoring him for a while, so he brings up other toys in the hope that one of them will arouse my interest.

Recovering

James is continuing his recovery. He was pretty much asleep/sedated while we were there this afternoon, but they're going down on his dose of fentenyl to try to wean him off. They're also giving him Ativan as needed. This is a drug to reduce anxiety, and I expect it will be especially helpful in the "in between" stage where he's waking up more from the painkillers, but still needs the ventilator. He does not like having the ventilator tube down his throat and tends to kind of fight it, so maybe the Ativan will reduce that a bit.

The highlights of Matthew's day were throwing up his morning meal (he has the regular baby spit-up fairly frequently, but has only thrown up large amounts a couple of times -- but of course they're always the times when he's had his vitamins, which stain!) and wearing a new outfit with cute little lions on the feet.

PS. Melanie was not supposed to publish the picture of me wearing the Gators t-shirt. But I decided that since this might make nurse J. smile, it was OK.