Equal Opportunity

It seems like we've been posting more pictures of Matthew recently, so in fairness, here's one of sweet baby James. (He's got a bit of dry skin here, but they're not allowed to have lotion until they're bigger!)

Fat and Sassy

Baby Mattie got a promotion today -- he's now wearing preemie size diapers! (I don't know what they call the size below preemie, which is what they've been wearing -- pre-preemie? sub-preemie? fetal?) James has also been gaining weight, but he hasn't caught up to his brother quite yet.

Field Trip

We had bad timing during our visit to the hospital today. To begin with, we must have arrived just as the "prepared childbirth" classes were getting out, because there were several pregnant women and their husbands carrying pillows back to the parking garage as we were driving in. (We were supposed to take that class in June, but instead, we had an unprepared childbirth!) Anything that brings up the thought, "I should still be pregnant" is not very helpful for me at this point, and a parade of preggy ladies falls in that category.

Then we were getting ready to hold the babies, and first there was a problem getting Matthew's CPAP in the right position (you might be sensing a theme with this; I have a feeling it'll be a struggle until he "graduates" from it!), and then the word came that the babies would be moved to a different room.

Our NICU is organized into six "pods" (insert your own pod people joke here), identified by letter. Our boys are in Pod F. (The letters don't signify anything; babies are placed in pods based on where there are openings when they arrive, and with twins they always try to put them next to each other.) Because there are relatively few babies in the NICU right now, they're doing a big floor cleaning, which involves moving everything out of the room/pod being cleaned. Yesterday we had several "guest babies" in our pod while theirs was being cleaned. (Interestingly, Matthew's new neighbor was also a 27-weeker, born a day before our boys, and at the exact same birth weight as Mattie!) Today they were ready to clean our pod, so our babies were moved temporarily into Pod D around the corner. The move didn't bother them at all. And the one advantage of Pod D is that it has very nice pictures of doggies on the wall, including beagle puppies! (Each pod has pictures that start with its letter. James is under a flamingo and Mattie is by some fish.)

But, with all the commotion of the move, we didn't get to hold the little guys today, which was disappointing. They're doing well, though. Mattie is even starting to look a little chubby, relatively speaking! (This picture is from a couple of days ago -- he's filled out even more since then.)

Cousin Daniel

The babies had a visit from their cousin Daniel (and Auntie Nora and Uncle Adrian) when they were first born. Daniel didn't actually get to meet his new cousins because visitors to the NICU have to be at least 13 years old. This was probably for the best because at nine months old, Daniel is in the "I want to grab whatever you have and put it in my mouth" phase, and that would be Not Good in the NICU.

At his recent pediatrician appointment, Daniel weighed in at about 20 pounds, so this is probably the only time in his life when he can say he's 10 times as big as his cousins!

Two Weeks

The boys are two weeks old today! They had a good day. Matthew is tolerating his feeds well, so they're going to gradually increase the amount he gets. And when the doctors were doing rounds, the nurse practitioner commented on how good James was looking -- very nice to hear!

We went in this evening and got to hold them for a while (Mike had James this time, and I had Matt), which was really nice. After James went back in his crib, they had some trouble getting his CPAP calibrated right, which was a bit unsettling because his blood oxygen dropped for a little while. It was nothing serious, but it was a reminder that he's still a little fragile.

We're hoping the next two weeks are much less eventful than the last two!

Videos of Matt and James

Matthew had his CPAP breathing mask off for a little while yesterday (the 26th). He was especially alert, but he seems a little suspicious of the activity around him. Or maybe not. At this age, he probably can't see too far away!

James is doing much better than he was a few days ago. In this video clip from Monday he is on the ventilator, but as of Wednesday May 27 he was off the ventilator and back on the CPAP.

Finally, yes, they can cry at this age. Matt is the feisty one in this video.

Bye-bye (for now) to Grandma

We were lucky enough to have my mom staying with us since the boys were born. (She thought she was coming up to visit my sister, and then she thought she was coming down from Virginia to keep me company for a couple of days when I was on bedrest, and then lo and behold she had two new grandsons!)

Even the NICU recognizes that grandparents are special -- grandparents are the only people allowed to visit the babies without the parents present.

Mom went back home today (since my brother and sister are down in Florida visiting). We'll miss her!

Relaxing

Today was a good day at the hospital. Massage students from one of the local colleges were offering free hand massages and facials for NICU families, and it was wonderful! It was so nice to relax and be pampered for a little while without having to make any special arrangements.

And after that, we got to hold the boys for about an hour, doing "kangaroo care" (skin to skin contact). Mike held Mattie again, and I held James. Both of the boys did really well. (The kangaroo care is good for them, but it's also a little taxing on them to be moved around so much at this age. When they're older, we can do it for longer periods of time.) And it certainly helped us feel good!

(If you're wondering what the NCCC stands for in the photo, it's Newborn Critical Care Center.)

Progress

Matthew had his second echocardiogram today, and the preliminary report is that his PDA (heart murmur) has closed up -- yay! We're still waiting on the official report, but it sounds like even if it's not completely closed, it's smaller (and smaller is better!) He's also continuing to gain weight, and they're starting him back on feeds this evening. (I don't know if we mentioned this before, but for now their feedings are breastmilk given though a stomach tube.)

It looks like James had a clear-enough X-ray today, so apparently this is Day 1 of his bowel rest. (Our impression from the nurse is that the little problem area is still there, but that it's either not changing or getting better, so they're not worrying about it.)

Instead of having one nurse each, the boys now have one nurse who takes care of both of them during any given shift. At first I thought this was just during the holiday (Memorial Day), but it seems to be a permanent change. It's probably a good sign that they're more stable and don't need the constant care, but at the same time, it makes me just a little nervous -- I want someone paying attention to my precious babies all the time! Really, though, they're hooked up to lots of monitors, so if something happens (say, Matthew pulling his CPAP out, as he likes to do), the monitors beep and someone is right there to take care of it. And even though there is just one nurse whose primary responsibility is the twins, there are several other nurses in the room at all times (in charge of other babies), but who can step in as backup.

Our Family

We got to hold James today! Here's the first picture of all four of us together, although you can't actually see much of the boys. (When we're holding them, they have to stay under blankets to help maintain their body temperature.) I have James and Mike has Matthew.

As we expected, Matthew wasn't quite ready for the nasal cannula -- he was on it for an hour or so and then they switched him back to CPAP. That's okay; he's got some time to grow into it!

Unfortunately, James didn't have a "clean" intenstinal X-ray today, so we're still waiting for that. It doesn't sound like things have gotten worse and the doctor didn't seem worried, but that means they don't start the clock on the 7-10 day rest period yet. He seems like he's doing better, though, and he's been fine off the ventilator.

The Daily Weigh-in, May 26

Here are the daily weights through May 26, 2009.
You need to click on the chart to see a bigger and more readable image.

Trial Run

Matthew has been doing well enough with his breathing that they moved him down to a lower level of respiratory support -- from the CPAP to a nasal cannula. (We wouldn't be surprised if they move him back up again, but it's encouraging that he's at least having a try at the lower level.) I think the cannula would be a bit less annoying for him -- smaller tubes!

Matt's other accomplishment for today is that he has surpassed his birthweight -- at this morning's measurement, he was one gram heavier than when he was born!

James came off the respirator this morning, which is also good progress. And they're hearing bowel sounds and he had a normal poop (see, here we go again with the poop!), which are both promising signs as well.

Baby Push-Ups

Mattie thinks it's never too early to start a fitness routine.

On the Right Track

James continues to improve. Today he had a "clean" X-ray (no intestinal bubbles, and the problem area they had identified before seems to be getting better), so he'll be on a 7-10 day course of antibiotics and "bowel rest" (no feedings through the stomach, just IV fluids). He's still on the respirator, but assuming he continues to do well, he'll probably come off it tomorrow. His color was a little pale, so they gave him another blood transfusion. (This may be because they have been drawing a lot of blood for regular tests.) However, they have weaned him off a lot of the meds and he's also less sedated (they had him on Fentenyl because they weren't sure if he was in pain), so he was more active today. So, although he still has some healing to do, he's moving in the right direction.

Happy Photos

Let's conclude a rough weekend with some nice pictures. First, a picture of Melanie holding Matthew.




Second, Mike and Melanie and Matthew:

Definitely Fraternal

Just back from a visit to the hospital; both boys are doing well. They are still watching James closely, but tonight's X-ray looked good and his blood chemistry is also holding steady. The nurse practitioner described it as a dramatic improvement from 24 hours ago. We are certainly breathing a little easier.

We were pretty sure the boys were fraternal twins, but it was confirmed tonight -- they have different blood types. Matthew is O and James is B. It turns out that mother-baby blood type incompatibility can lead to higher bilirubin levels, so that might be why James has to be under the lights for a little longer (I'm O-positive).

Buddha Baby

Matt is a little squirmy bear; he's always kicking his feet and wiggling around. He was giving them a hard time last night because he likes to pull his CPAP (breathing mask) out. (The yellow bag in this picture is to weight down the tubes so he can't do that and so it doesn't slip out accidentally.) So, don't let this pose fool you -- he's not very Zen!

Matthew had his second echocardiogram this morning, and although the heart duct is smaller, it hasn't closed completely. So he'll have another three day course of baby ibuprofen, and hopefully that will do the trick. (As we mentioned before, this isn't a serious issue, but they like to see the duct closed because having it open can make their breathing more difficult.)

I got to hold him again today, which was great (especially because he didn't have any apneas this time!)

We just called in to check, and James continues to be stable, which is good.

Morning Update

James had a good night. They are moving him from the super-ventilator back down to a regular ventilator, and his blood chemistry and blood pressure look good (glucose is a little high, so they're giving him insulin). His morning X-ray showed no air bubble (no perforation), which is a good thing, and his tummy looks the same as it has for two days, so that's also good (distention of the belly is a symptom of the infection becoming more acute). The first 72 hours is the critical period for seeing how the infection will go, and we're at about 48 hours now. Things can change fast (as we discovered yesterday), but right now things seem to be on the right track. (We spent the night at the hospital last night, and it was so nice to see smiles on the doctors' faces this morning!)

Absence of bad news (a good thing)

The good news is that James' most recent x-ray does not show an air bubble inside his bowels that would indicate dying tissue or a perforation. Nor does his tummy reveal the type of tautness and swelling that often indicates a perforation. The longer he avoids these outcomes the better his odds of beating the infection. His vital signs and blood chemistry improved a bit since his nadir this morning, and they have stayed there all day. This, too, is a good thing.

James has NEC, necrotizing enterocolitis, an infection and inflammation of the bowel that can damage or kill all or part of the bowel. One particularly scary outcome is a perforation of the intestine which requires surgical treatment and can be fatal. But medical treatment (antibiotics, managment of blood and respiration, etc) can also defeat the infection, and that is where we are right now. Here's a link to a short discussion of the condition: http://kidshealth.org/parent/medical/digestive/nec.html#


Thanks to all of you for your prayers, wishes, and positive vibes. We'll update the blog when we know more, which probably won't be until 8 or 9 AM.

Matthew is doing well. He has regained about half of the weight he lost since birth, and he seems to be getting better at breathing and keeping his heart beating.

Unpredictable

It's been a rough day. James is fighting for his life. Earlier today his blood chemistry was all out of whack, and they gave him a number of different drugs and put him on a new type of ventilator to get things back in line. As of right now, he seems to be stable and doing better, but it's a waiting game to see what's happening with the infection. We are hoping the antibiotics work.

Matthew continues to do well; he's active and gaining weight, and of course we're all keeping a close eye on him.

We had the boys baptized today. Like many things, it was earlier than we planned, but we felt it was the right time.

Thanks to all of you who are keeping us in your thoughts and prayers.

So Far, OK

James is stable and this morning's x-ray showed no change in the size of the infected area, and more importantly, no perforation in the bowels. He is on the ventilator, and has been since 5 PM yesterday. Matthew is still doing fine (he actually gained weight for the 2nd night in a row), and his belly looks OK.

James Needs Your Good Thoughts

He has an infection in his intestines. This is one of the more serious potential complications. They are treating it with antibiotics, and we hope that works.

The Next Thing

The boys had echocardiograms today to look at their hearts. (This is a non-invasive procedure, like an ultrasound -- although apparently Matthew was not amused by it and let them know about it!) There's a heart valve that's open in newborns and usually closes in the first few days of life, but often does not close on its own in preemies. My understanding is that this condition (patent ductus arteriosus or PDA) isn't necessarily serious in and of itself (it's basically a heart murmur), but it can contribute to respiratory problems. It turns out that in both boys, the valve hasn't yet closed.

The first line of treatment for this is to give them "baby ibuprofen" (indocin) for three days. Because the medicine can also constrict blood flow to the intestines, they also stop feeding the babies while the treatment is going on. While this sounds awful (or at least it did to me -- my poor little babies not getting their supper!), they're going to be on IV fluids the whole time, which provide nutrition, glucose, and so on -- so while they probably won't gain any weight during that time, they don't expect them to lose much either. The nurses also say that at this age, they probably won't even notice the missing feeds, so it won't cause them the kind of distress it would cause an adult or older baby. (And speaking as someone who was recently on IV fluids, I can say they do a surprisingly good job of keeping blood sugar levels high enough that you don't feel especially hungry.)

We didn't hold the boys today because we figured they had been through enough commotion with the echocardiogram, and James is still on the bili lights. But they were doing well (and keeping up the good pooping work -- the nurse said tonight that James was "pooping big time!")

It Goes Up to Eleven

Today is the boys' one week birthday (and Mike's something-more-than-a-week birthday!) The morning update was good -- they're upping Matthew's feeds to 11 ml, AND he's "pooping up a storm." We're so proud of our little guy! He's also gained weight instead of losing it, though he remains just a bit behind his brother. James is also doing well and gained a little weight, too.

Poop!

One of the things we've been waiting for is the boys to have their first poop. Not because we're overly fond of excrement, mind you, but because it indicates that their digestive systems are working as they should. It also helps them get rid of the bilirubin, so they don't have to spend as much time under the lights. After much encouragement (Mike told James that Matthew said he would poop first, and he told Matthew that James said he would poop first, to create some competition), James had his first poop this evening, and Matthew had a smear of poop (with hopefully more to come).

Oh, man, we're truly parents now -- hopefully we won't be boring you with too many more poop stories!

(Photo is from 5/15, me changing Matthew's diaper for the first time.)

We Got to Hold Our Baby Today!

Today we were able to hold Matthew for the first time -- so exciting!! We're able to do "kangaroo care" (skin to skin contact) for short periods of time. He's still hooked up to his CPAP for breathing and lots of tubes for various other things, but we can hold him as long as he's maintaining his body temperature.

He seemed very calm and peaceful when we were holding him. (At one point he was a little too peaceful -- one of the issues that preemies frequently have, and our boys are no exception, is occasional episodes of apnea. Essentially, they "forget" to breathe and you have to touch their hand or foot to remind them. Matt did this while I was holding him, and although it's not serious, it was really scary! But other than that, it was awesome.) And he's so tiny -- it feels like he barely weighs anything. (Like most or maybe all babies, he's lost weight since birth, and he's now down around two pounds. They're increasing his feeding each day, so we're expecting him to start gaining again soon.)

Hopefully we'll be able to hold James tomorrow.

Maybe They Should Make These Calls in the Afternoon

In the NICU, no news is good news -- they'll call us if something bad happens, but otherwise, they wait for us to call them (which we usually do first thing in the morning, last thing before bed, and sometimes in the middle of the day).

We were awakened this morning by a phone call from UNC, and the person on the other end of the line introduced herself as So-and-so, a NICU case manager. That evoked instant terror. "Are the babies okay?" was the first thing I said -- and then she clarified that the babies were fine, and that in fact she was not one of the medical staff but a social worker. Whew. (I think it took about an hour before my adrenaline levels were back to normal after that.)

I never expected to be someone who had a social worker assigned to me! It turns out that they contact all NICU families in the first week, and can connect people with resources (for instance, if we didn't have reliable transportation to the hospital). However, she primarily works with people when they're getting ready to take the babies home, which will be quite a while for us. So she had a lot of questions like whether we had carseats (no), a place for the babies to sleep (yes), a pediatrician (no), and so on. In the end, it was kind of encouraging to at least think about taking them home. And even though we don't need all of the services, I'm continually impressed with all the things the UNC hospital does to support parents and families.

Tiny Fingers

Mike's hand and James's hand, from May 16 (2 days old). You can click on the picture for a larger view.

Us with the Boys

The top picture is Matthew, and the bottom one is James; this was our last visit while I was still in the hospital (the green badge is my "off unit pass"). Both boys have had the lines taken out of their umbilical cords, which means they can be in different positions (on their sides or their tummies instead of just on their backs). Little Mattie looked very comfy snuggled up with a blanket when they had him on his side.

We had a great visit with them this afternoon. James opened his eyes and although I'm sure he can't really see much at this stage, it seemed like he was looking toward us when we spoke. (If that's not neurologically possible at this stage, don't tell us about it!! We thought it was really cool.)

They've had the boys under blue lights for their bilirubin levels (a fairly common issue, especially as the boys have not pooped yet despite our encouragement), so sometimes when we've been in there, they've been wearing their baby shades to protect their eyes from the light. Matt has them on in the top picture.

Home from the Hospital

I was discharged from the hospital yesterday -- we stuck around as long as insurance would allow. It's really nice to be back in familiar surroundings, to see Stanley, and to be able to sleep in my own bed (without people popping in at all hours of the day and night to take vital signs, do rounds, empty trash, and deliver food -- although I'm sure at some point I'll be missing that food delivery!) We arrived home to several beautiful bouquets of flowers sent by friends, a lovely surprise.

It feels strange to be home without the babies, but we feel lucky that our jobs are flexible enough that we should be able to visit them every day. I'm sure over the next days and weeks we'll get a schedule worked out; preemies need a lot of rest, and so while we want to spend as much time with them as we can, we also don't want to overstimulate them too much.

Birth Story, Short Version

Thursday May 14 saw the early arrival of the twin boys, James Frederick Barr and Matthew Alden Barr. They were born at 27 weeks, 1 week after Melanie went to the hospital with pre-term labor symptoms. After a week of hospital bed rest, she was scheduled to be discharged Thursday afternoon (May 14). Her physical exam Thursday morning looked fine, indicating she was good to go home. But, she started having some back pains just before lunch that the nurses attributed to muscle spasms or pinched nerves. You can probably see where this is going……by 1:30 the pain had intensified a lot, at which point one of the nurses observed that “she looks like she’s in labor”. The doctor conducted another quick exam and confirmed that, indeed, she was in labor and the babies were already on their way. Melanie asked him if he was sure, and he smiled and said yes, he was sure. They rolled her immediately upstairs to the OR for an emergency c-section. Fortunately, she was awake for the delivery and I was by her side.

Matthew arrived first, at 3:33 pm. He was 14 inches long. His color was pretty good from the start and he was doing well with his blood pressure and breathing, although he was put on a ventilator pretty quickly after the delivery. He was taken off the ventilator within 24 hours (a good thing) and his condition continues to improve.

James was born at 3:38 pm and weighed 2 lbs 5 ounces. He was 14 inches long. James was bruised by the delivery and had a nicked umbilical cord, causing a bit of bleeding. This probably contributed to his poor color and low blood pressure at birth.

A day later and after a blood transfusion and 4 doses of surfactant (lubricant for the lungs), James’ color and vital signs have improved. As of midnight Friday he was maintaining his blood pressure on his own, his color improved, and by Saturday afternoon he was removed from the ventilator.

Horses in a Windstorm

A couple of times each day, and longer on some days (or in L & D), the nurses do fetal heart monitoring on the babies. Some biophysicist or medical engineer somewhere is missing a golden opportunity, because a person who could invent better equipment for this task could make a mint and save hours of nursing time.

Literally hours -- they needed to get a 20 minute session on the babies yesterday, and I think it ended up taking at least two hours, three nurses, and an ultrasound machine to get it done. And I'm glad they're following their rules and making sure the babies are healthy, but it strikes me as a little bit of overkill in my case, because 1) the fact that the babies are so squirmy and hard to keep on the monitors is evidence that they're doing well, and 2) as far as I know, the medical problems that have me here (short cervix and contractions) aren't ones that are related to fetal wellbeing (as opposed to some women who are on bedrest for issues like placental problems or fetal growth restriction).

The way they currently do the monitoring is that they have little disks, around the size of hockey pucks but lighter, that pick up the babies' heartbeats. The problem is that the babies move around a lot (and they're small enough at this gestational age that they have a lot of room to move), and so it's hard to keep them on the monitors. Also, the bottom of the monitors are flat, and pregnant bellies are not, so it's hard to keep the monitors in the right place and at the right angle. (For the shorter sessions, the nurses just hold the disks in place; for the longer sessions, they strap them on with elastic bands -- the yellow strips in the picture.) And with twins, they have to find both the babies and make sure they're not getting the same one twice. (They also have to make sure they're not getting my heartrate instead, and apparently I make this difficult because my heart rate is elevated. In fact, I have set off the alarm several times already because my heart rate is too high. Clearly I am not as calm as I may appear.)

The monitors track the heartrates electronically once they're found, but the nurses mostly find them by listening. The audio sounds like a windstorm (all the fetal movement plus my blood flowing), and then the baby heartbeat sounds like horses galloping. It's pretty cool.

It seems that the ideal solution would be to create a wide belt that goes all the way around the belly, and then have a series of microphones (or dopplers or whatever it is that they use) embedded in it. Then you'd need an algorithm to identify heartbeats among the other noise, and once a heartbeat was located, essentially track that heartbeat even if the source moved. Another alternative would be to embed an ultrasound viewer in the monitors, so the nurses could visually see where the babies are rather than just having to guess by sound.

More Drama

Here's Mike's summary of what's been going on in our neck of the woods:

Thursday night at 8 PM Melanie and I went to the ER because she was experiencing symptoms of pre-term labor. They gave her some medication to slow down the labor process and some steroids to help the babies. So far so good. Melanie was in the intensive care unit of the L&D (Labor and Delivery) unit of the UNC hospital. [Note from me: this isn't actually a special unit of L & D; it's just intensive because of the nature of their business!] This involves constant monitoring of the heartbeats of both babies and of Melanie's contractions. The hardest part of this regimen is trying to pick up the fetal heartbeats. This is an ongoing struggle because the little guys move so much. On the other hand, the good news is that the babies are 2.3 lbs each, they move a lot, and their heartbeats are really good. Whatever is causing the pre-term labor is not coming from the babies.

Friday night Mel had a good night of sleep. They monitored her contractions and the babies this morning, and everything and everyone looked good. So around noon today (Saturday May 9) she was moved out of the intensive care unit of L&D and moved down the ante-partum unit, which is where they put expectant moms-to-be who are not in imminent danger of delivering.

Melanie will probably be in the hospital until at least her 28th week (May 21), and possibly all the way until delivery, which could be as late as the beginning of August. It really depends on the status of her contractions and, of course, the health of the babies. It is possible that she could be released in the next 10-24 days if she doesn't have any more symptoms, otherwise she will stay in the hospital.

Latest update: so far, so good!

The Alien Phase

I've been able to feel the babies kicking since around the 15th or 16th week of the pregnancy, and we've also been able to feel them kick from the outside -- but now you can actually see my belly move when they move! It's a little freaky!