Videos, day 47

This is Matthew in his first day back in the 'big boy' crib.

This is James at 47 days. He had surgery a few days ago and he just got off the ventilator earlier this afternoon. He is full of excess fluid so his face is puffy and he gets very red when he is agitated.

Return to the Big Boy Bed

Mattie got promoted to the open crib again last night, and is keeping his temperature up just fine so far. However, he may have been missing his isolette today -- there are two new babies in the pod, and one of them (the one right next to Matthew) is VERY LOUD. As in, I could hear him crying all the way down the hall even though the pod door was closed. The other new one is a bit of a crier, too. (I didn't realize before how spoiled we were with the preemies -- even though Matthew cries when we're doing something he doesn't like, as soon as we finish whatever it is, he quits crying. The bigger/older babies keep up the crying for longer. I guess this is a preview of coming attractions.)

Mattie is doing fine on the cannula, and they moved his feeding tube from his mouth to his nose. (I thought this would be kind of gross looking, but actually, with the tape to hold it on, it's barely noticeable.) Sometime within the next few days, they're planning to start trying to do some of his feedings by mouth (bottle-feeding). They look for signs that he's ready, like rooting around or sucking on his pacifier. (I'm absurdly excited about this! It'll be great to be able to feed him that way.)

Mike was on duty for today's triple-diaper poop. It was quite impressive, complete with sound effects.

Matthew's weight last night was 2000 grams (millennium baby!), or about 4 lbs, 6 oz. At this point, most of that is probably real weight rather than fluid. We can't say the same about James, who is tipping the scales at above 2100 grams. So although he's currently more than double his birth weight and bigger than his brother, lots of that is still fluid, so it doesn't count! They gave him a dose of diuretic today (Lasix, which always makes me think of laser eye surgery when they say it), which should help with that.

James is off the ventilator, and doing fine on his CPAP. He was agitated off and on this afternoon, squirming around and fussing. We couldn't figure out why; maybe his throat was a little sore from the ventilator tube, or maybe he had some gas, or maybe something else. (The squirming might help work some of the fluid out, so at least that had a side benefit.) He seemed a little happier when he was sucking on his pacifier, and he also seemed to settle down a bit by the time we left, when they had him lying on his tummy.

Oh, and the doctor informed us that James had a broken clavicle (collarbone) "at admission" -- that is, from his birth. It's all healed up now, of course, but they noticed it on the X-ray. Poor kid! We're sad that it happened, but it's good to know about it (that way if we ever have to take him to the emergency room, it'll be on his medical record so they don't drag us off to jail for child abuse).

In more positive news, James also had a new picture up on his monitor (and a fancy new letter B on his crib). Our nurses are great. :) He may not have the crib for much longer; this afternoon the doctor mentioned moving him into an isolette soon.

Edited to add: James had another milestone today -- his umbilical cord stump finally fell off! It's been hanging around for quite a while.

More Cannula

Matthew has remained on the cannula since yesterday afternoon, and as of this evening when we left, he was still doing great! Yay! (We'd all be delighted if he were done with the CPAP for good -- keep your fingers crossed!)

He's wearing one of the preemie outfits he got as a gift, and it fits him perfectly. We'd better bring in the other ones before he outgrows them. :)

Jamesie looked a bit less puffy than yesterday, though he's definitely still retaining some fluid. (It's funny -- some of the medicines he's on are prescribed by weight, so they're using his pre-surgery weight, which they call his "dry weight.") He also seems to be feeling better than yesterday. They've weaned him off his fentenyl (though they can give him another dose if he seems to be in pain), and the current plan is to try to get him off the ventilator tomorrow. (He's alert enough now that he seems to be a bit annoyed by having a tube in his throat. Can't blame him for that.)

They're now thinking about when to start his feedings again. The report from morning rounds was that they'd try in three days, but when we talked to the resident this afternoon, it sounded more like five days. We don't have much say in the matter, but if they're on the fence about which to do, we'd prefer to wait until after the holiday weekend. I know there are always doctors, surgeons, etc., on duty even on holidays, and hopefully everything will go fine with the feeding now that his circulation to the digestive system is (presumably) better -- but just in case there are problems, I'd rather have more rather than fewer experts around!

All in the Timing

I'm glad to say that the most exciting news from this afternoon is that, not wishing to let his brother have all the glory, James also peed through his diaper and was promoted to the newborn size. He's still rather puffy, so we hope he keeps up this good work.

This evening he started having a few more arrhythmias after most of the day without them. We're a little disappointed that they've returned, but the doctors still aren't worried, and think it will probably work itself out as he keeps feeling better and his potassium levels slowly get back to normal.

Matthew demonstrated his excellent timing today. Having learned my lesson from past experience, I had a cloth covering him up during the diaper change, except for the moment I removed it to wipe him -- so he picked that exact moment to pee! I got the cloth back on, but not before he christened the foot of his cute little outfit.

Matthew is also doing great on his cannula; they changed the time from three to six hours today, and since he did so well with it, he's actually been on it even longer than that. (And he had a great big poop after not pooping for a day or so -- once again we're celebrating excrement!)

(Photo is from 6/26.)

Sunday Morning

James's heart pattern seems to be back to normal, at least for the last twelve hours or so. Hopefully he's back on track now!

And Mattie peed through his diaper this morning, so they're going to move him up from the preemie size to the newborn size. Go, Matthew!

Rhythm and Fluids

Little Mattie-bear decided that peeing on me the other day wasn't enough; today when I was holding him, he spit up on me! (It was quite a good volume of half-digested milk -- yuck!) He was perfectly well-behaved for Mike, though. (And if there were a contest for stinkiest britches, Mattie would win. The nurse opened up his isolette and said, "It smells like an outhouse in there!" And she was right! Of course, none of that stops us from holding him as much as we can.)

James is doing pretty well, although he has been having some heart arrhythmias that they're keeping an eye on -- essentially, extra heartbeats or erratically timed beats that don't follow the normal rhythm of heartbeats, but it doesn't seem to affect his respiration or oxygen saturation, so this is different from typical preemie bradycardias (heart slowdowns). They know from his echocardiogram that nothing is wrong with his heart physically, so they think it might just be a temporary chemical imbalance throwing things off a little bit. His potassium is low, so they're giving him more of that and hoping it will solve the problem. Although we find it disturbing to see on the monitors, the doctors (including the cardiologist) don't seem to think it's anything dangerous.

He's also retaining a ton of fluids (due to the surgery), so it's possible that the fluid retention is contributing somehow. (To give you an idea of how much extra fluid there is, he gained more than 100 grams last night, when typical "real" weight gain is more like 20-30 grams.) His face and chin are so puffy that his little neck has disappeared! (And it actually got a little chafed from moisture getting trapped there -- poor baby!)

Otherwise, though, he seems to be recovering well. His color and respiration are good, and he's not showing other signs of distress. He was even awake for a while this evening, although they're still giving him fentenyl for pain control. Thanks so much to everyone for your prayers and good thoughts for him!!

Video from Surgery Day

This is from Friday morning, before James went to the OR. He was slightly sedated and on the ventilator. Melanie is giving James some confidence and comfort before going to surgery. It must have worked!

Surgery Went Well

James is out of the OR and is recovering back in his usual spot in the NICU. He and his parents are happy that he is surrounded by familiar faces in Pod F. The surgeon told us that his operation was completed with no complications. His diastolic blood pressure has already improved (the pressure of the blood flow between heart beats).

They warned us that he might be kind of sick for a couple of days while he recovers, but so far he's doing great -- he's stable and not needing much extra oxygen. He'll be on the ventilator for a little while (probably through the weekend) to let everything heal up. The ventilator helps for two reasons. First, as part of the surgery, they had to spread some ribs and move his lung aside to reach the heart, so his lungs/ribs might be a little sore for a while (making it harder to breathe). And second, keeping him on the ventilator allows them to give him pain medicine as needed. (They used fentenyl for both sedation during the operation and for pain relief afterwards.)

Now we can breathe again, too!

Hanging Out

Not surprisingly, the surgery team is running late. They haven't called up yet, and our nurse says it's usually a half-hour or so between when they call to tell them to get the patient ready and when they actually come pick them up. So, we expect it'll be at least another hour or so before things get started.

They put James on the ventilator (because it is difficult to transport babies with the bubble CPAP -- the bubble CPAP is a bit of a pain to keep working right under the best of circumstances), and he's doing fine. He's resting comfortably, so we've just been hanging out with him and Matthew (who is also doing fine).

I don't know what's up with the radiologists, but James had another messed-up X-ray today -- what was supposed to be a belly X-ray ended up being partly a chest X-ray and partly a belly X-ray. (Sigh.) But what they saw looked good, so that's encouraging!

Surgery Tomorrow

James is having surgery tomorrow to fix his heart murmur (more technically, to ligate or close his PDA). As we may have mentioned before, this is a fairly common surgery for preemies. Any surgery has risks, but this procedure has an excellent safety record, and the surgeons at UNC are very experienced with it. The pediatric anesthesiology team that will be treating him is also very experienced. So of course it's scary to have our little baby having surgery, but the expectation is that he will come through it fine.

The surgery is scheduled for 11 AM, but the nurses warned us that surgeries often do not start on time. So don't worry or be surprised if we don't post any updates until tomorrow evening or night.

We were hoping that we wouldn't have to put him through the surgery, and if he hadn't had the second episode of necrotizing enterocolitis (NEC), the decision most likely would have been to not do it. (My understanding is that this surgery is more typically done on babies who are having respiratory problems, because the heart murmur changes the pattern of blood flow to the lungs. Although James still needs some breathing support, he hasn't needed a lot of supplementary oxygen, and he's basically been on pace with Matthew, whose murmur was closed by the drug treatment. So they wouldn't have done the ligation for respiratory reasons.)

But the doctors now think that the murmur is preventing James from getting adequate perfusion (basically, oxygenation) to his intestines, and that this may be contributing to the development of NEC in his case. The suggestive evidence for this is that 1) for the current bout of NEC, the bowel problems are not resolving as quickly as they usually see, and 2) in the kidney ultrasounds, it appears that there is some backflow of blood, so that the kidneys are getting perfused for one part of the circulatory cycle (when the heart is contracting), but not during the other part of the cycle (when the heart is relaxing). In essence, then, those organs are only getting part of the oxygen they need. As I mentioned in the last post, the kidneys themselves aren't a particular concern, but they don't have good ways of measuring intestinal perfusion yet, so they're using this as a proxy. An additional factor is that when they did the most recent echocardiogram, they saw a very slight increase in size in the left side of the heart, which indicates that the PDA may be causing his heart to have to work harder. Taken together, this suggests that the surgery may really help take stress off of some of his body systems by getting his circulation back to a more normal pattern.

This surgery used to be the standard of care, and relatively routinely done for all preemies who had a PDA. It still is in some hospitals, but now there has been some research questioning the benefit of the surgery. In particular, it is not always as effective at helping respiratory problems as people expected it would be, and it also appears to increase risk for some kinds of later problems (developmental delay or disability). (At the moment, this association with later problems is just a correlation -- they don't have an explanation for why it might happen.) As it happens, two of the leading experts who are advocating not doing PDA ligations are here at UNC. We spent a long time talking with one of them a couple of weeks ago. (He wasn't even "on duty" at the time, yet he took an hour or so out of his day to discuss all this research with us -- the doctors here are awesome.)

Certainly having this counterpoint makes the decision to have the surgery more difficult, but on the other hand, we know that the other doctors on the faculty are very aware of this research, and two of them (plus the cardiologist) have recommended doing the surgery nonetheless. The two who made this recommendation are the doctor who was in charge during the last rotation, and the doctor who is in charge for the current rotation. Neither one of these doctors has any wish to put a baby though an unnecessary procedure, but both of them believe that it is the right course of action in this case. We have come to agree with them. Most importantly, we want to do all we can to have him avoid getting NEC again. (He's come through it twice, but it's a serious disease that can be fatal.) Obviously the PDA surgery is not a guarantee of that, but the doctors think it will help. And although it may slightly increase James's risk for other problems down the road, he already has risk factors for those problems, and we just have to hope for the best.

Lovely Day

We had a great afternoon and evening with the boys.

James had a new nurse today. We're usually a little disappointed when we find out that it's not one of "the regulars", but the new nurses are often wonderful as well, and we end up learning new things from them. Although the core of the care remains the same, everyone has their own way of doing things or certain little extras that they bring to the job. James's nurse today was great. (We figured we would like her when, during our morning phone call, she spontaneously commented on how adorable he was. What can I say, we're easy to please!) When we came in, she told us that she had put some lotion on James's skin where it was a little dry (apparently he's old enough for it now), and she gave him a little massage.

She swaddled him up so that I could hold him, and this was the first time I've held him in the non-kangaroo position. It was so nice to be able to look into his eyes, and he was awake and alert, looking around. (He definitely seemed to be feeling better today!) Of course, I'd only been holding him a little when the tech came in to do his renal ultrasound, and I had to put him back on his bed. (The ultrasound had been ordered yesterday, but when we arrived, it hadn't been done yet. The nurse had called to check on it, and they said they were swamped but would get to it sometime later that day. Too bad later came so soon! The ultrasound is to look at blood flow to his kidneys. They're not concerned about his kidneys per se, but this is a piece of information that will help in making the decision about whether to do the surgery to fix his heart murmur. More about that later.)

When the nurse was picking him up to put him back on the bed, she pointed to his forehead and said, "See this spot here? This is where he needs a kiss." This maybe doesn't sound like a big deal, but we haven't really been giving the boys kisses (except through their blankets), because we weren't sure if we were allowed to. That may sound silly, but for obvious reasons, there's a lot of concern about avoiding infection in the NICU. We're constantly washing our hands or using hand sanitizer, and we didn't know if a kiss would be too much exposure to germs. So getting to give my son a kiss was special.
I also got to hold Matthew for a long time. As Mike mentioned in the previous post, they gave him a diuretic because he was retaining fluid and looking a bit puffy -- yesterday he had sausage fingers! Anyhow, it must have worked, because at one point I shifted a little and felt liquid running down my belly -- he'd filled up the diaper and peed all the way through it and onto me! It was hilarious. Fortunately I was wearing a surgical gown at the time.

I also noticed when I put him back in bed that I had a baby footprint on my tummy. (My belly looks HUGE in this picture. Yes, I still have some baby weight, but not quite as much as it appears!)

Mike spent some quality time with James, keeping him comfortable during his ultrasound and talking to him. He also got to hold Mattie for quite a while. Mattie was very content with his daddy!

Quick Update

The boys are doing about the same as yesterday, which is fine with us. We are at the hospital right now visiting the twins. Melanie is giving Matthew some skin-to-skin contact, along with a little bfeeding practice. Matt seems to know what to do. James isn't ready for this yet, but he is getting much better at sucking on his pacifier and keeping his heart beating at the time.

Matthew was given a dose of a diuretic today so that he could eliminate some of his excess fluid. He is a bit puffy and his blood pressure is still high but may drop if he is less puffy.

Good While It Lasted

Matthew did fine in his new crib overnight and this morning, but in the early afternoon, he started to get a little chilly -- so they put him back in his isolette. (Then he was hot, though -- so it's a difficult balancing act.) Oh well! As we mentioned in a previous post, there are definitely some advantages to the isolette (quieter and darker so he can sleep better), so we're not too disappointed by his temporary demotion. And he did get some good kangaroo time with his daddy today. :)

James had a good day. We talked to the doctors more about his X-rays, and it turns out the false alarm on the first one really was just an artifact of the angle the X-ray was taken (what they thought could be some free air was actually one of the bowel loops). That was very reassuring, especially because I thought we were past the stage where perforation was a big danger, and the doctor confirmed that that was right. (I suppose nothing's impossible, but the doctor said he'd be extremely surprised to see something like that at this point.) So, hopefully tomorrow's X-ray will be smoother sailing. (At this rate, the poor child will be glowing in the dark by the time he comes home!)

Ignorance is Bliss (in this case)

So, this morning's report from the nurse was very good, as Melanie reported earlier. But there was one piece of information that underscores the up-and-down nature of preemies. It turns out James had 2 belly x-rays this morning, not just one as scheduled (they planned the x-ray for 6 AM to verify that he had no pneumotasis). After reviewing the image from the 1st x-ray, the doctors thought they saw some 'free air' in his belly, an air pocket outside of his bowels, in the abdomen. This is a sign of the dreaded perforation of the intestine. So, they quickly took a more detailed x-ray (probably from a different position, but we don't know the full story) to verify the finding. Fortunately, a closer look revealed no air and hence no perforation. Melanie and I were fast asleep while all of this took place early this morning. The point here is that had we been aware of the tentative diagnosis from the 1st x-ray we would have been terribly stressed until the results of the 2nd were available (usually 30 minutes from snapshot to report). We had some residual tension after hearing the news, but we have been assured that he is still doing fine and exhibiting no signs of renewed bowel troubles, though his belly is still a bit tender.

Not to Be Outdone

James decided to catch up to his brother -- his weight today was 1814 grams, or four pounds exactly. Yay for James!

Unfortunately, the doctors reconsidered his X-ray from the other day, and decided that it wasn't quite a clean X-ray. Our understanding is that the gas bubbles in the intestinal lining were pretty much gone (thus the initial read as a clear X-ray), but that the bowels are still a bit distended, and they want to keep an eye on it. So, we're still waiting to start the "bowel rest" period -- keep sending those good thoughts his way!

Mattie's Big Day

Matthew had two milestones today. First, he passed the four pound mark! This morning's weight was 1864 grams, or 4 lbs, 1.75 oz. (We suspect this is a little inflated because he's retaining some fluid, but even taking that into account, he's definitely grown. Very exciting!)

And second, he got moved into a "big boy bed" -- the open crib. This is the step above the isolette, and as long as things go well and he's able to maintain his temperature in there, he'll stay in this crib until he gets to come home. (If he has trouble with his temperatures, he'll go back to the isolette.)

Hooray for Mattie!

Isn't He Cute?

Sweet baby James says Happy Birthday to Grandma Barr!

Babies and Dog

Nothing grew in the blood cultures, so apparently Matthew didn't have an infection after all -- that's good news! They're taking him off his antibiotics today. (His high blood pressure is still a bit of a mystery, but it's responding well to medication.)

James is doing well. They did a chest X-ray on him the other night (fortunately after we had left, or we would have spent another evening worrying), and found that he had a tiny air leak from one of his lungs (pneumothorax). This can happen when babies are on a ventilator, because of the pressure coming into the lungs. However, it doesn't seem to be bothering him any (his respiration and oxygen saturation has been fine), and they expect it will just heal up on its own. They'll keep an eye on it, but do not seem to be concerned about it.

And our first "baby", Stanley, got a clean bill of health from the veterinarian. :) Following in Green family tradition, the vet said that Stanley could lose a little weight, and also following in Green family tradition, we will most likely ignore this advice. (The vet said he likes to have his dogs always hungry, so they eat whatever you put in front of them. He also said not to feed Stanley canned dog food, because it all comes from China and "they're poisoning it." He's a little bit crazy, but that's okay.)

Father's Day Gift

James and Matthew's nurses had a special surprise for Mike on Father's Day -- getting to hold and kangaroo with both babies at once. (Because both of the boys are hooked up to various wires and tubes at the moment, this isn't a trivial task! But they made it happen, and the little guys did great.)

This was the first time the twins have been "reunited" since they were born. They didn't seem to take too much notice of each other yet. Mostly they just slept peacefully on Daddy.

Although the babies are not at their most photogenic with their bubble CPAPs on (the big tubes that you see here), it was wonderful to have our family all together. (In the picture, Matthew is the one closer to me.)

Happy Father's Day!

Happy Father's Day, Mike!!! James and Matthew are lucky to have such a great dad!! (Little did we know that fatherhood would involve gaining so much medical knowledge.)

And happy Father's Day to Grandpa Barr and Grandpa Green, Uncle Adrian, Uncle Chris, and Uncle Paul (and all the great-uncles, too!) We hope you all have a wonderful day.

And finally, happy 50th Anniversary to Great-Aunt Jeannie and Great-Uncle Don! (We wish we could have been there to celebrate with you this weekend.)

Baby update: James continues to do well, and it sounds like this is "Day 1" of the bowel rest, so we assume this means that he had a clean X-ray today (hooray!). Matthew is also doing well, and they're back up to 15 ml of milk per feeding (and waiting for some pooping!)

Doing Well

Both of the little guys had a good day today. Even though Matthew is still in the warming bed, his nurse put him in clothes and swaddled him, which made him much happier. (He also got a blood transfusion, which seemed to perk him up. The red IV line in this picture is actually the transfusion line.) They have his isolette out in the hallway with a note on it to save it for "Green A", so with luck he'll be back in it sometime soon.

James was very feisty during his care time -- he was crying up a storm. It's good that he has all that energy, but hearing him cry just made me want to pick him up and snuggle him! (He settled down after we were done torturing him with things like changing his diaper.)


Videos below -- first is Matthew from June 20. He was pretty alert this afternoon.


James is feeling better; he is starting to make noise when we bother him.

A Visitor's View of the NICU, Pod F

Last week our good friend Niki visited us. She spent some number of hours at the NICU keeping us and the boys company. Niki posted her impressions and some photos from her visit in her blog, so I thought I would 'borrow' some of the posting for our own blog. Niki is a keen observer of people and things, and an entertaining writer to boot.

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------ from The Nikiverse http://www.thenikiverse.blogspot.com/ -----

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June 16, 2009. As you know, i've been in NC visiting Mel and Mike and meeting the twins. I spent quite a bit of time in the NICU and it wasn't at all what i expected. Having spent more than my fair share of time in hospitals with my mom i find them to be depressing, antiseptic places that suck the vitality right out of your eyeballs. Not this place. I mean, yes, there was a low level of terror the whole time waiting to see how James was doing, but generally i found Pod F to be a bright and hopeful place. The nurses were amazing and the equipment was astonishing. People were friendly and genuinely interested and concerned by the twins' progress.

The only really hard part for me was that i couldn't touch the boys as they are keeping contaminants to a minimum, which is perfectly understandable, but it took a force of will to not tuck Matthew's perfect little hands back into his swaddling or stroke James' head so that he would know he's not in this battle alone. We did spend a lot of time talking to both boys and one of my favorite moments was when i heard Mike singing the theme from I Dream of Jeannie to James.

It was also nice to see Matthew come out of his isolette and be held by both mom and dad. To give you an idea of size, here is Matthew in relation to Mike's arm.

It's Always Something

Beyond the high blood pressure, Matthew didn't seem to be quite himself yesterday. His temperature was a little low, which may have been due to the fact that he was undressed and in the open air for quite a while in the morning while they did the kidney ultrasound (which showed normal results, according to the initial report). Then he didn't do well on his cannula; he started having breathing problems after only about an hour, whereas usually he can do three hours with not much trouble (and ironically, this was right after the orders to give him up to six hours on the cannula per shift). And his belly was big, something which they'd been keeping an eye on for a few days. (There are some benign possibilities for why his belly was big -- the CPAP can introduce extra air into the belly, for one, and for another, we thought it was possible that it was just his build and his weight gain.) Of course, after James's experience, we are paranoid about the possibility of necrotizing enterocolitis (NEC), so we asked them whether it made sense to do an X-ray to check. In the afternoon, they said no, because he really had no other symptoms (he was still pooping, still had bowel sounds, was generally stable with his vital signs, etc.). But although he was still mostly tolerating his feedings, at his afternoon feed, he pushed a lot of milk back up into the venting tube. (They attach an empty, open syringe to the feeding tube after the milk has been given, to help air get out. But when a baby tenses his stomach, sometimes some milk gets pushed out as well. Matthew has pushed out a tiny bit of milk before, but this time it was a lot.)

Then when the night shift came on, the nurse measured his belly and it was two centimeters bigger than earlier in the day. This was enough to cause them to order the X-ray. (Of course, we always get a big song and dance about how they don't want to expose the babies to unnecessary radiation -- which is true and perfectly sensible -- but once again, there was a problem with the first X-ray and they had to do it again! It is possible that this time it was Matthew's fault, since he is a squirmy one.) The results came back and the findings were not consistent with NEC (thank goodness) but he did have an ilius, or air in his intestines. (This is air inside the intestines themselves, rather than the air bubbles between the layers of the intestines which are a sign of NEC, or air bubbles outside the intestines which indicate a perforation.) This suggested that things were not moving through the intestines in the way they should, and so they suspected that he might have some kind of blood-borne infection. His white blood cell count was a bit low, which also may indicate infection (although it was not low enough that they were 100% sure).

They put him back in the radiant warming bed (so he's temporarily demoted from his isolette), took blood and urine samples for cultures, started antibiotics, and stopped his feeding. (I was a little upset that they had to give him an IV again and also had to use a catheter to get the urine sample, because any time you have something going into the body like that it can be a pathway for infection -- but then I realized that since he was already getting two kinds of antibiotics, that was probably the least of our worries.) They also gave him a blood transfusion because his hematocrit was low (anemia), and even though his body was making more red blood cells, they didn't think it was going to get back up to speed quickly enough.

His night nurse thought that he was looking much better after the first dose of antibiotics, and he was definitely feistier then. And his nurse this morning (his primary) thinks that he's pretty much his normal self -- when we called, he was crying and fussing, and she thinks it's because he's hungry. (Poor kid! He had a little tiny feed today and they'll see how it goes; he may get IV fluids or they may try to move him back to milk.) His blood pressure is still high, though; they're giving him some medicine but haven't quite figured out what's going on with that.

The cultures to test for infection generally take about 48 hours; if something grows, they'll know he has an infection and they'll know what it is. They also use that information to figure out which antibiotic is best for treating that particular infection.

Obviously it's not good that he has a possible infection and some intestinal troubles, but at least so far it looks like the antibiotics are helping get rid of whatever it was. We know that things can change quickly, though, so keep your fingers crossed for him!

James is doing fine, still on the CPAP with no problems. His X-ray today showed a very slight improvement, and they're hopeful that tomorrow might be a clean X-ray.

Early Evening Update

James is off the ventilator and back on CPAP (the bubble kind again) on room air, and doing great. His belly looked a little big to us, but it actually measured a bit smaller than yesterday, so they're not worried. And he seems comfortable and more active, also good signs.

I think Mike's title in the previous post about Matthew may have been unduly alarming; if so, sorry about that! Our impression from the conversation with the doctor this afternoon is that while they want to figure out why Matthew's blood pressure is high, it's not something that presents an immediate danger. They'll treat it if they need to (with blood pressure drugs, similar to adults), because longer term it can make his heart work harder and cause damage, but they did another echocardiogram on his heart, and it looked fine (which indicates both that the blood pressure isn't being caused by any type of heart problem, and that the pressure hasn't caused any damage to the heart). We haven't gotten the results from the kidney ultrasound yet. But basically, a common cause of high blood pressure in preemies is tiny blood clots that can form when an umbilical line is used, which Matthew had for the first few days of his life (as did James). These clots can get into the kidneys and cause them to work harder, but they typically dissolve by themselves over time.

It's Matthew's Turn

They're doing some tests on Matthew because they noticed he's been having higher blood pressure readings. This can be related to kidney function (although there are no other indications thus far of kidney problems), so they're looking at that first. We'll probably know more after talking to the doctors this afternoon.

James will probably be weaned off the ventilator today. There was some doubt earlier this morning, but apparently the most recent information led the doctors to conclude that he's ready to come off it (although with an extra dose of caffeine to keep his breathing up). This morning's X-ray was about the same as yesterday, with still a small area of pneumatosis. (We were hoping it would be all gone, but the good news is that it's no worse.)

Still Good

James had a good day; everything continued to be stable, and assuming he has a good night tonight, they're planning to take him off the ventilator tomorrow morning.

This evening when we were visiting, a team of surgeons came in to see James. This was mildly alarming at first, but they quickly clarified that they were just doing their usual rounds. They routinely have the surgery team check on all patients with NEC, so that if the babies do have to go into surgery, the surgeons are familiar with them and their situation. (At this point, it does not look like James will need that kind of bowel repair surgery.)

Of course, the surgeons arrived just after Matthew and I had been practicing breastfeeding skills, so I was not exactly fully clothed for their visit (and couldn't move around much because I was still holding the baby) -- fortunately Mike was able to talk to them!

Matt had his first bath last night. We weren't there for it; they usually do baths on the night shift because it's a little quieter then. (It would have been fun to have helped out, but we figure we'll have other chances!) They've been putting barrier cream on his bottom to prevent skin breakdown, and it's a cream that's intended to stay on the skin -- it doesn't get completely wiped off at each diaper change. So, after a while it's a little gross, and a bath helps! The nurse said that he didn't like the process of getting in the bath, but after he was there it relaxed him. (She took a picture, and it must have been at the start, because he was one red-faced angry baby!)

"Do Twins Run in Your Family?"

Happy birthday to the first set of twins in the family, Auntie Nora and Uncle Isaac! (And also happy birthday to Auntie Erin, who by coincidence shares the same birthday!)

Improvement

James's morning X-ray showed improvement. (Hooray!) There's still a problem area, but it's smaller than yesterday. We are so happy that things seem to be heading in the right direction.

The boys also had their eyes checked today, and they both seem to be fine. (Bet you didn't know they could read eye charts at this age!) The doctors are looking for ROP, or retinopathy of prematurity. This is a condition that happens when the blood vessels in the eyes develop abnormally. Being on high levels of oxygen is a risk factor for ROP, so our NICU is careful to keep the oxygen saturation levels within certain ranges for babies on supplemental oxygen. (Our boys have mostly been on room air on their CPAPs, especially Matthew -- James has occasionally needed a little extra oxygen boost, but nothing for a long enough duration that they think would be a problem for his eyes.) They have pretty good treatments for ROP these days (laser surgery, for instance), but it used to be a big cause of blindness -- ROP is why Stevie Wonder is blind. In any case, so far so good for our babies.

Keep on Keeping On

James is still stable. His blood chemistry has been looking good, they've been moving down on his ventilator settings (weaning him off of it), and he's not sedated. (The first 48-72 hours are the most critical period, and we're now a bit past 48 hours.) To us, he looked better today than yesterday. They're only doing X-rays every 24 hours now unless something changes (that is, he shows outward signs of getting worse), so the next one is tomorrow morning.

Matthew is doing well. In fact, he's keeping his temperature so well in the isolette that he was in a onesie today (under his "burrito" swaddle, shown here), instead of footed pajamas, so he wouldn't get too warm. Apparently he's on the borderline of being able to move into an open crib, but we'd rather have him stay in the isolette for a while -- it's a little quieter in there, and he's probably able to get better rest that way. Also, there's no need for him to burn extra calories keeping warm at this point. (He keeps chugging along with the weight gain, and is now at 1690 grams, or about 3 pounds, 11 ounces. James is at 1633 grams, or 3 lbs, 9 oz, although that may be inflated a little because they gave him some extra fluids the other day.)

Mattie's Next Step

(James update below.)

Mattie had a good day yesterday. Because he's around 32 weeks now, they're starting to ease him into the process of getting food by mouth. With preemies, they generally do both breast and bottle feeding, because breastfeeding takes more energy and they don't want them to burn up too many calories. (Also, of course, they feed every three hours, and moms aren't usually there around the clock!) Right now, and probably for a little while yet, he's still getting all of his nutrition by tube (which they've upped to 30 ml per feeding), but he's been sucking on a pacifier, and they've started sometimes putting a drop of milk on the pacifier so that he can taste it. (In full term babies who will be breastfeeding, the recommendation is often not to give a pacifier until nursing is established, but the rules are different for preemies.)

Last night we also gave him a few drops of milk by mouth as they were starting his feeding. The NICU lactation consultant -- who is awesome, super nice and extremely helpful -- came in yesterday, and showed us how to position him for breastfeeding. He opened his mouth, and even took a couple of experimental sucks. Pretty cool! This is about all they hope for at this point; the idea is to get him used to the idea of feeding.

Maybe the best part was that I held him for a while after that, and he was wide awake and looking into my eyes. (The kangaroo care is great, but for kangarooing, the babies are lying on their stomach on our chest, so because of the angle, you mainly see the top of their head and their backs; it's a little hard to see their faces.) Such a sweet boy!

Absence of Bad News :)

The news is good insofar as James' Wednesday morning x-ray showed no increase in the gas pockets in his tissues. And his blood chemistry does not indicate a deterioration of his condition. So, taken together, he is not getting any worse after 36 hours of wait-and-see. This does not mean he is out of the woods, but, it is somewhat reassuring because every day that he does not get worse is a day that increases the odds that he will beat the infection. NEC is somewhat unpredictable and you are not quite sure when the disease has run its course, hence, we wait on pins and needles for a few days to determine if the infection is spreading, holding steady, or petering out.

This is a picture of James taken sometime Tuesday evening. It is hard to tell that there is a battle taking place in his belly. He is slightly sedated and has a breathing tube in his mouth.

Holding Steady

James is holding steady; his blood chemistry looks pretty good and the night X-ray showed no changes for the worse (and perhaps a slight improvement over the morning). So we are still in the waiting game and they are keeping a very close eye on him, but the current signs are encouraging.

The X-ray was supposed to be done at 6 PM. The radiologists finally showed up at 8:30 PM (apparently it was a busy night, and James wasn't an emergency), and then another radiologist came back around 10 or 10:30, and said another X-ray had been ordered. Of course this scared me to death, but it turned out that they just couldn't get a good read on the first one. (When the first radiologists came in, it took them a lot longer than usual to get the X-rays -- it looked like one of them was in training, and our guess is that they made some kind of mistake with it.) So the doctors finally came in to give us the results around 11:20 PM or so. It was a long time to wait, but we figured since a team of surgeons wasn't rushing in, that it probably was at least temporarily okay.

Mattie is doing fine. And we're going to bed!

A Little Better

2 PM Update: No bad news is good news. James' blood pressure remains good, his heart rate has returned to his more normal rate, his belly's size and firmness hasn't changed -- these indicate the absence of deterioration, which is all you can really observe in these early days of NEC. The next round of x-ray and lab results won't be available until after 7:00 PM. James and his parents are comforted by the fact that one of James' favorite nurses is watching over him today. She is his first line of defense right now, watching for the first small signs of changes in color, belly, temperature, and other signs of distress.
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James's morning's X-ray showed a little improvement, and they have gotten his blood chemistry more stable. Last night, he had higher levels of carbon dioxide and glucose than they like to see, and they had to keep going up on the ventilator settings to get things back in line. He's still on the ventilator and probably will be until at least tomorrow. (That way he can use his energy for healing instead of getting tired breathing.) They're going to do X-rays every 12 hours (rather than every 6) unless something changes (that is, if his clinical picture -- the visible signs and symptoms that he's showing -- gets worse, they'll do an X-ray sooner). So, we are still on edge, but at the moment this is a little more hopeful than last night.

We are very glad that both of the boys' primary nurses are on today; last night both of them had new people, and while James's nurse especially seemed excellent, we are more comfortable with people who have had them before, because we think that they will be able to recognize changes from the boys' normal patterns or behavior more quickly than someone new. (For instance, a couple days ago, one of the nurses who hadn't had the boys before said, "Oh, James is the more active one!" We just laughed, because it's exactly the opposite! Of course, since Matthew is swaddled, he looks a lot less active from an outside perspective.)

Matthew seems to be doing fine. His heart rate was elevated last night, which had us worried (but which the nurses didn't seem concerned about -- but again, they hadn't had him before and so didn't necessarily know that it was different for him). Mike mentioned it to them and to the doctor, and the doctors discussed it at rounds this morning. Although being sick could cause that, they don't think he's sick because he's not showing other signs. The other more benign options are that 1) he could have been a little hot (which we think is probably what it is -- his temp was on the high side of normal), 2) it could be the caffeine (they raised his dose recently to adjust for his higher weight), or 3) it could be because he's anemic (which he is, but since another test showed that he's making red blood cells, they decided that he didn't need a transfusion). In any case, it seems to be back closer to normal this morning, so we're not too concerned.

Things Change Fast

Bad news: James has NEC again.

Everything had been looking so good -- they had even moved him into an isolette last night, and we had a conversation this afternoon with the doctor that suggested he wouldn't need the surgery for his PDA (heart murmur). But then later this afternoon he started having respiratory problems, low oxygen saturation. They did X-rays and found air bubbles in his bowel tissue that indicated NEC. They have him on the respirator and antibiotics (and sedation), so now we're in another period of wait and see.

3 AM Update: No new information, really. The latest x-ray showed the pneumatosis (gas bubble in the lining of the intestinal tissue) is still there, and has not gotten any smaller.

Bon Voyage

Yesterday we said goodbye to one of our favorite doctors -- she's finished with her fellowship and is off to Ohio for the next stage in her career. (Congratulations!!) We will miss her! Dr. Laurel is the one who took care of James (and us!) when he was sick. She had to deliver very bad news to us (more than once), but she did it in a way that made us feel like we were informed and that we were all in it together. She was absolutely wonderful about making sure we understood what was going on and answering all of our questions. So, while I'm sure that her medical skills are excellent, what we will remember most is her caring and compassion, which made a dark time for us a little easier.

Brutus Buckeye, Matthew, James, and the two of us wish her all the best in her new adventures! The families at her new hospital will be lucky to have her.

Another Trial Run

This morning's doctors must have been pleased with James's progress, because they decided to give him a trial on room air. ("You mean the nasal cannula?" we asked. No, actual regular air, like normal people breathe, with no assistance. Apparently there are differences of opinion about whether the cannula is a worthwhile intermediate step.) We were excited about that, since his current CPAP is still a little tough on his head. The mask keeps it from hurting his septum, but instead it kind of pushes in on the top of his nose. Getting a break from it would definitely be a good thing. We were also a little nervous, because we didn't think he'd be ready to be breathing on his own for very long. And indeed, we were right -- he lasted ten minutes. But hey, that's a start! (And better than he would have done a week ago.)

Although both of our boys are doing well, it was an unexpectedly intense day in the hospital. One of the other babies in the pod was having trouble, and he (I think it's a boy) was surrounded by a lot of intense activity -- getting him on a ventilator, bringing in various pieces of equipment for tests, nurses and doctors around the bedside. We don't really know what was going on (due to medical privacy regulations, the staff can't share information about other patients, and we know not to ask), but looked an awful lot like what must have happened the day that James was so sick. It brought all those feelings flooding back, and our hearts went out to that other family. We didn't want to be there but we also didn't want to leave -- although we know the nurses would pay attention to the other babies if their alarms went off, most of the attention was on the sick baby, so we felt more comfortable staying for a little while to keep an eye on our boys. (Before we left, I heard a nurse say "he's stable" -- but that little baby could probably use some extra prayers tonight.)

AM Conversation

Nurse D: Matthew stooled [pooped] with every diaper.
Mike: The guy's a machine.
Nurse D: Your sleeper [the new outfit from Grandma] is covered in poop.

Grandma Love

Grandma Barr got to hold Matthew for a few minutes this afternoon; he seemed to enjoy it! And he also got to wear a cute new outfit that Grandma Barr bought for him. (Thanks, Grandma!)

They upped James's feeds to 3 ml per hour, and so far, so good! He had kangaroo time with his daddy, and did great.

(It looks like Matthew has a bruise on his eye in the bottom picture, but I think he doesn't really -- it's just the light/shadow in the picture.)

Edited to add: The late-night update was "they're doing great!" Can't ask for more than that.

First Name Basis

Matthew had a new nurse last night, and when we called in to check on them, she said (twice!), "I have A." (Matthew is twin A because he was born first, and James is twin B, because he's a boy. Just kidding.) It was a little disconcerting to have him referred to by letter rather than by name! It was too impersonal for our precious little baby, center of our universe, light of our life, etc., etc.

And while I think that they use the A and B for the formal medical orders, Matthew's name is in two places on his isolette, on a big card on his vital signs monitor, and (unless yesterday was different from other days), written on the top of his chart. So, it's not like it's a secret!

On the other hand, social psychologists have investigated a phenomenon called implicit egotism, which suggests that we unconsciously tend to prefer things that are connected to the self, including even relatively arbitrary things like letters in our names. (There are some cute studies showing that this can even affect life decisions, so people named George are proportionally more likely to live in Georgia, and so on.) So, maybe Nurse A was simply bonding with Matthew by calling him something that was more similar to her own name. :) [I'm teasing -- Nurse A was actually very nice and very conscientious!]

However, now Mattie can connect to great pop culture traditions:

"I am not a letter -- I am a free baby!"
"Who am I? 24601..."
I Got A Name

And when we were talking with one of the nurses I met while I was on bedrest, I think I did refer to him as "The Baby Formerly Known as A." (As I may have mentioned before, Matthew was very difficult to get on the fetal monitors, so he had a reputation already by the time he was born!)

Friday Night, Gonna Be All Right

Mattie says, "Talk to the hand, paparazzi!"

James is doing well -- this morning they upped the feeds to 2 ml an hour, and his residuals have been looking good. He was feisty when they did his 4 PM care, which is also a good sign (better than lethargic!), so we're feeling a bit more optimistic.

We didn't go in to the hospital today, because Mike had some congestion, and on the chance that it was a cold we didn't want to pass any germs on to the little guys. (It's so hard to go a day without seeing them!) He's feeling better, though, so we're taking advantage of the World's Most Expensive Babysitters and going to catch a movie.

11:55 PM Update from Mike: Both boys appear to be doing as well as they were earlier this afternoon. They've had very few As & Bs (apneas and bradychardias) and James is not displaying any signs of gastric distress (that's my catch-all term for the absence of blood in his stool, no hardening or distension of the tummy, and non-green stomach residual).

More Drama, James Style

James continues to keep us on pins and needles. Early this morning the nurse saw some blood streaks in his little smear of stool. This is never a good thing, but is not always the worst case, either. They x-rayed his tummy to see if there was something wrong with his bowels, such as dilation or other signs of distress. We just found out at 11:30 that the x-rays were clear -- he doesn't seem to have dilation or blockage. His residuals are also very small and the appropriate color, and he isn't acting sick. The doctors think the blood, which was on the brighter side of red, could be coming from small fissures near his, ummmm, exit orifice. The plan is to watch his vital signs very closely, continue with the continuous feed, and hope he eventually takes in all the milk and sends it out the other side without further drama.

Matthew continues to do well in his new surroundings (his isolette). They are putting diaper cream on him now because his bottom was looking a little red (perhaps we're verging into "too much information" territory here), but the Cajuns in the crowd will be disappointed to hear that it's not Boudreaux's Butt Paste.

Both boys have been gaining weight. Matthew is 1525 grams (3 lbs 6 oz.) and James is 1506 grams (3 lbs 5 oz.).

One Month

So far, so good -- James has continued to tolerate his feedings today. We're really happy about how well he's done so far, and we hope he's able to keep it up! I got to do some kangaroo time with him today, which was very nice. Of course, they had waited to put Matthew on his cannula until we came in, but Mike didn't make it in today because he had a bad headache. So poor Mattie didn't get his kangaroo and cannula time today! (Mike held him for a long time yesterday, though, and he looked like he was sleeping very comfortably in his isolette when I was there.) I'm sure this is only the first of many times as a twin mom that I'll feel a little guilty for not being able to give the same attention to both of them at once.

It was a busy day in Pod F -- a new baby had come in right before I arrived, so now they're up to full capacity. (They were also doing a procedure on one of the other babies, so I walked in to a room full of people in scrubs and masks -- yikes! Everything was fine, but it was definitely busier in there than usual.)

Edited to add (9:20 PM): Well, the last check of James's residuals revealed a little bit of greenish stuff -- so not as promising as before. We'll just have to see how it goes, though.

Thirty-One Weeks

Mattie is doing very well in his new house; they're putting him on the nasal cannula for longer periods of time, and so far he's doing well with it. He also keeps knocking the CPAP out, but it often doesn't cause him to have apneas, so the nurses are not too worried about it -- they say that maybe it's just part of weaning him off it. And he likes sucking on his pacifier, good practice for when he starts trying regular feeding (maybe another week or two; depends on when he's able to get off the CPAP). James likes his pacifier, too, but sometimes he can only do one thing at once and forgets to breathe when he's sucking on it.

When Matthew has a diaper change in the isolette, they don't open it all the way up. Instead, we just stick our hands in through the portholes, which keeps the heat in better. It takes a little getting used to! Fortunately, he behaved himself today and didn't go crazy with the diaper-time pooping.

James had a great day; his nurse said he was really active and alert this morning, and he was sleeping peacefully when we were there. They did start him on his feeds. They're doing what's called continuous feeding, which is delivering small amounts of food very slowly (1 ml over the course of an hour; in contrast, Mattie is getting 26 mls over the course of a half-hour every three hours, and last time they tried James on feeds they started with 3 ml over a half hour). It's probably too early to tell how it's going to go, but they started this afternoon, and when they checked his residuals tonight, they were small (and milk-colored rather than green). So, tomorrow will be a better indicator, but it's a promising start.

Three Too!

Guess who crossed the three pound mark today? That's right -- James! He weighs 1377 grams today. We are impressed that he is putting on the weight even just on his IV fluids. Hooray for James!

He's doing well today, so they may try again with food. We think it is a little early still, but the doctors will probably want to go ahead.

They did a repeat echocardiogram on him, and his PDA (heart murmur) is still moderate to large. I think that's an improvement over just "large", which is what I recall it was before, but it's not good enough -- they're still concerned that it's causing problems for him (making him work harder to breathe, possibly causing some decreased blood flow to the intestines that could contribute to the feeding intolerance). So the option of correcting it surgically is now on the table, and we will likely have some decisions to make about that in the near future.

Any surgery has risks, but according to our Preemies book (and the doctor), this procedure (PDA ligation) is generally considered to be safe with a low rate of complications. We definitely don't want to put him through it if we don't have to, but in his case, it seems to us like it might really help him. And the doctor -- who is pretty straightforward about things and does not seem the type to sugarcoat anything -- said that James is a "great candidate" for the surgery. They often do this procedure on much sicker and younger babies. At the same time, apparently there is some benefit to not waiting until he's older and bigger, because the procedure becomes more technically complex for the surgeons as the babies get bigger, and the longer the PDA goes uncorrected, the more it might cause problems for the lungs or other body systems. So, his response to the feeding attempts will provide some additional information, and we will be discussing this with the doctors over the next couple of days.

Movin' On Up

Matthew had a big day today! He got promoted to new digs -- a baby condo (otherwise known as an isolette). His old crib is on the left of this picture, and the new isolette is on the right. The isolette is for babies who are a little more stable and a bit better at maintaining their body temperature.

The other exciting part of this is that he got to wear clothes for the first time! (I can't help thinking of Dobby the house elf from Harry Potter..."Dobby can only be freed if his masters present him with clothes, sir!") The nurses picked out an adorable little outfit for him with a dinosaur on it. (We can bring in our own outfits for him, too, but we hadn't realized that clothes were part of the deal with the isolette!)

As you can see, even the preemie sizes are a bit big for him -- we had to roll up his sleeves!

The babies in the isolettes are also swaddled (wrapped up somewhat tightly with a blanket). I figured that Matthew would either love it or hate it, but so far, he seemed quite happy with it! He looked very relaxed and was sleeping peacefully when we left.

Matthew also had a big day on the diaper front. Mike cleverly volunteered to change James's diaper, leaving me with Matthew. He had a big poop when I took off the diaper, then (because I foolishly forgot to put a diaper or cloth over his front while I was changing) peed all over the new diaper and his crib (he achieved quite an impressive distance, I must say), and then when we were cleaning up from that, he delivered another humongous poop all over the new diaper and his crib pad! So it took three diapers for one diaper change -- mama has learned her lesson to change more quickly next time! (And although they say the poop from breastfed babies isn't supposed to smell, this child can certainly stink up the the place. Hmm, maybe that's the real reason they're moving him to an isolette...)

Bottom picture: Matthew says, "Yo, dude, this isolette rocks!"



James had a good day, too, but not as exciting as his brother's. :)

Baby Restraint

Matthew's nurse came up with a new way to try to get him to stop pulling off his CPAP -- he's got a little baby straightjacket on! (It didn't seem to bother him, though he still managed to dislodge the CPAP by moving his head from side to side.)

Jamesie is doing fine; he looked quite pink while he was having his blood transfusion, and then he settled back into the pale color that's more usual for him (although he'd been pinker the last couple of days before the feedings, so I know he can do better!) His belly is less puffy than yesterday, so the tube seems to be doing well at getting some air out. It sounds like they're still going to wait a little bit before trying feeds again, which seems like a good plan to us.

The Phone Didn't Ring

It was hard to leave the hospital last night, and we told them to call if James had any more problems. We didn't get any calls, and this morning's report was that he'd had a good night -- no serious respiratory problems or other issues. Whew, that's a relief!

They did bloodwork and his hematocrit was low, so he may get another blood transfusion. (Preemies don't make red blood cells fast enough, so they sometimes need a little extra help with a transfusion.) He's already had a few transfusions (from the same donor), and it's a very small amount of blood each time, but it does seem to help him out.

The doctors hadn't done their rounds yet, so we don't know if they're going to give him a little more bowel rest or if they're going to try again with small amounts of food.

Updated (1 PM) to add: Yes on the transfusion, no on more food today. He seems to be doing well, & we'll go visit this afternoon.

Back on the Roller Coaster

They continued to try James on feedings today, this time dropping the amount down to 1 ml. He had a bad reaction to it (had a big breathing and heart slowdown). They did an X-ray, and saw some air in his intestines (an ilius). This isn't the kind of pattern that suggests NEC or a perforation (thank goodness), but rather it seems to be more like gas, similar to the kind of air that can get trapped in the intestines after abdominal surgery. (I had a little of this after the c-section, and hopefully he doesn't have referred pain in his shoulder like I did -- that was no fun!) It's uncomfortable and it stops food from moving through the way it should, but we don't have the impression that it's a serious or dangerous problem per se. They've put a tube in his stomach to try to remove some of the air, and they'll keep an eye on him and see if that helps. Hopefully it will do the trick; he seemed to be fairly stable with his breathing and heartrate when we left, but if he starts having more respiratory problems, it could be a sign of an infection and he may have to go back on antibiotics. So, we are a bit worried, but at this point we'll just have to wait and see.

Three Pounds!

Mattie crossed the three pound mark today! (His weight is 1375 grams, or just over three pounds.) We're so proud of our lil' chunky monkey!

And despite his tummy troubles, James is not too far behind, at just shy of 2 lbs, 14 ounces. (The morning report was that he's still doing fine, not showing signs of any additional problems beyond the feeding intolerance.)

Not Yet

Well, James's return to feedings didn't go quite as well as we'd hoped. They gave him 3 ml of milk at 2 PM, and it hadn't digested by 5 PM. (Feedings and other care, like diaper changes and temperature checks, are done every three hours -- they group it all together so that they don't have to disturb them in the meantime.)

The way this works is that they use the stomach tube to pull the contents out (into a syringe) and look at them. (In practice, this is not quite as disgusting as it sounds. This is also how they get rid of excess air; a bit more direct than burping!) They're looking for the residual, or how much milk is left over. Ideally, this will be a low amount, less than half the amount they put in. In Matthew's case, for instance, he's having "trace" residuals, which is great, because it means almost everything they're giving him has gone through the digestive system. For James, though, the residual was basically the entire feeding, except it had turned an unpleasant green color.

So, we were a bit freaked out about this, but apparently it's not unusual for it to take a little while for the digestion to get back in order. In other words, he just might not be ready yet. They'll try again tomorrow, and the doctor said to be patient, because it might take several days before he's ready to start tolerating the food. He doesn't have a fever or breathing problems or other symptoms that would lead them to worry about an infection or a more serious problem, so hopefully it'll just be a matter of time.

Meeting Grandma Barr

The boys got to meet their Grandma Barr tonight. Matthew woke up and looked around when he heard her voice; James decided he wanted to keep napping. (That's okay -- she'll be here for a while, so he'll have other chances to say hello!)

Matthew is up to "full feeds" now, 25 ml of milk at a feeding. And they removed his PIC line, the IV that was in his arm. It's nice to have one less tube attached to him!

(Top picture with Mike is Matthew, bottom picture is James.)

Below is a video of grandma and James.

Tour of Home

This is a short video giving you a quick tour of Matt and James' home-away-from-home. It is a one-room condo with all of the most up-to-date medical electronics that a preemie could hope to have. The staff is incredibly attentive to the needs of the residents, and security is tight. It is sometimes a little noisy but none of the tenants seem to mind.

Three Weeks

Today is the boys' three week birthday. They're both doing well, and Matthew reached another milestone today -- they took him off his IV fluids, so he'll be getting all his nutrition from feeds (milk plus fortifier for extra calories). Hooray!

James has one more day of bowel rest, and then they're going to start him back on a very small amount of milk on Saturday. This is a good thing (after all, he has to eat sometime!), but we're also a little nervous about it because we don't want the infection (NEC) to come back. So, keep your fingers crossed! He's looking really good -- we think he's pinker than he's ever been (he's always been a little on the pale side), and he had another good day of weight gain.

We found out today that James's primary nurse got her degree from the University of Florida -- so some of you will be happy to know that he's being taken care of by a Gator fan! (This assumes, of course, that you too are a Gator fan. Although nurse J. is great, I am not sure that her unfortunate choice of SEC football fandom is cause for rejoicing -- Mike.)

[The photo is a view of the hospital from the hospital parking garage.]

Simply the Best

We came home from the hospital today to find a delicious dinner of fresh strawberries and NC BBQ waiting for us in the fridge, a gift from one of our neighbors -- and then another neighbor showed up with a wonderful meal for tomorrow night! Cooking has fallen a bit by the wayside since the boys were born, so we very much appreciate the rescue from another night of frozen pizza or hospital cafeteria food! (Although Mike wishes to note that he cooked hamburgers, chicken a la king, some vegetables, eggs, blueberry muffins, and some boxed rice dishes since the babies appeared).

We feel so fortunate to have such wonderful friends and family supporting us during this time. Your emails, your comments on the blog, your thoughts and prayers for our family -- they mean so much to us. Thank you for being there, thank you for everything you do! James and Matthew are lucky little boys to have so many people cheering them on!

We're also grateful for the wonderful care that the boys are receiving at UNC hospitals. The doctors are great, but the real heart of their care is from the nurses, who are with the babies all the time. (The doctors rotate in and out of the NICU, and also don't necessarily spend much time with each individual baby -- except of course when the babies get sick.) Although the boys have had a number of different nurses during their time there, they also have some nurses who are with them regularly. The nurses can choose to be a "primary" for a particular baby, which means they'll be with that baby when they're working, or an "associate" for the baby, which means they'll have the baby if the primary person isn't working. Each of our boys has a primary for days and at least one of them has a primary for nights. (It makes me feel all warm and fuzzy that someone chose our babies in particular to work with! And Matthew's primary was there when he was born, which is cool.) We've pretty much liked all the nurses we've met, but we LOVE the ones who are primaries for the boys -- we're always happy when they're on duty! I think it really makes a difference that they get to know the babies. They know what's normal for them, and when something is off, and they're great at solving problems. For instance, one day James was having more breathing problems than usual, and his nurse thought that his feeding tube might be too big and he was choking on it a little -- and they changed the tube and everything was fine. It's sometimes hard that we can't be there all the time, but we're confident that the babies are in excellent hands.

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We had a nice afternoon with the boys. They're doing fine -- and I may have to take back my skepticism about James's weight gain, because it looked to me like he is starting to fill out a bit! Hopefully he'll keep up that trend. Matthew is still doing well with his feeds (up to 17.5 ml per feeding), and having stinky poops. :)