More Sunday morning video

Here is some more activity from Sunday morning.

Tummy time and exersaucer fun

From Sunday morning, Feb 28. Matthew sure loves jumping up and down in his Excer-Saucer, although you can't see much of that in this video clip.

P.S. I know that the video is something not functional, but then again sometimes it is. So I am leaving this posted for the times when it de3cides it wants to work. Sorry about the inconvenience.

Isn't that Special?

On Thursday, we had our first appointment with the Special Infant Care (SIC) clinic. This is a clinic run by the doctors in the NICU to follow up with babies who are at risk for developmental delays, and our boys qualified because of their birthweight and because of being 27-weekers. The SIC brings together all sorts of different specialists who are knowledgeable about common preemie issues, everything from speech to occupational therapy.

We were sort of looking forward to this appointment, because the people in the NICU talk about the Special Infant Care clinic with great enthusiasm, and because we figured it would be fun to see some of our old doctors again. I have to confess that I was also looking forward to it because I thought that we would get to hear how great James was doing (and Matthew, too, of course).

It wasn't quite what we had imagined. We did get to see two of the doctors that we'd gotten to know in the NICU (which was really nice), although not the attending doctors we'd gotten to know the best. And people did say how well the boys were doing ("They're so fat!" and "They look just like regular babies!", which are both high praise in the NICU world). One of the nurse practitioners even took a picture for the bulletin board ("we like to have success stories"), which was neat because we certainly took hope from that bulletin board when our babies were up there. (I always looked at the babies born even earlier than ours who were now doing fine.) We also got to check in with the awesome nutritionist (we needed to get the right recipe for concentrating James's formula to 24 calories).

They didn't have any concerns about Matthew, and his weight has him rapidly approaching the bottom of the growth curve for his actual age. They said it was good "catch-up" growth, but it still seems a bit odd to me that he should even be expected to be the same as a full-term nine month-old.

For James, there were three issues. The first was getting his feeding volumes up, which we're already working on, but they emphasized it even more because he's getting to an age where eating becomes more volitional and less a matter of instinct, so it's harder to change bad habits. On a related note, they're not concerned about his weight (he's still gaining), but they wouldn't mind seeing more weight gain -- especially because he's had a bit of a jump in height, and they want to make sure he's getting enough calories to keep a good height/weight ratio.

The second issue is that although he seems to be on track with his understanding of language (whatever that means at this age), he's a bit behind in his expressive language. I think they would like for him to be doing more of the consonants.

The third is that when he's being held, James has a tendency to hold his arms out by his sides like a tightrope walker. Apparently this is a preemie thing, but one that they want to correct by encouraging him to keep his arms more forward. The developmental pediatrician explained that having his shoulders back like that could impede the development of his fine motor skills, because it discourages him from picking up toys/objects and playing with them at the midline (in other words, where your hands come together at the center of your body). We mentioned that he already picks up toys and plays with them at the midline all the time, but nonetheless they want to have him do some therapy to address the issue. (This seems to be a case where a small amount of intervention now will avoid bigger problems later.)

So, for these last two issues, they want to have him see a developmental therapist. This will be coordinated through Early Intervention and the person will come to our house, so at least that's a plus.

Even though these aren't huge things, and it really is good that the doctors are on top of these issues and dealing with them early, it was still disappointing to have new problems. Looking back on it, I think some of my disappointment was a matter of having a different perspective. My mental comparison for this appointment was James now with James when he came home from the hospital -- and from that viewpoint, his progress has been amazing. ("He has a fully functioning liver! He's happy! He's sitting up!") But they're looking at it from the perspective that James should be just like any other kid, and at this point, that's probably the right expectation.

There were a couple other interesting things about the visit. First, the doctor said he could guess which one was the more hyper twin and which one was more calm -- but he picked Matthew as the calmer one, which is just the opposite of what we would say! (We were there first thing in the morning, and James seems to be more of a morning person than Mattie.) And second, they did a rough hearing test by seeing if the babies turned toward a ringing bell, and they both did. I think that James responds to enough sounds that if we were just relying on those kinds of tests to look for hearing, we wouldn't know that he had a hearing problem. I guess it's good that they do the newborn screening, then, because now he's getting help a lot earlier.

And speaking of hearing testing, we left a message for one of the other audiology doctors, and she's working with us to get the test scheduled. (It turns out that the audiologist who we would normally be working with is out of the office for a while because she's adopting a baby, and the adoption came through suddenly -- so that explains why we couldn't reach her!)

Talking to Grandma

James has gotten much better at sitting on his own recently. He does well in this "tripod" position, but he can also sit for a little bit when he's straighter up. (I discovered this because his Early Intervention coordinator was here yesterday afternoon for her monthly visit, and I told her he could sit for a few seconds by himself -- and then he impressed us both by sitting up for several minutes! His hands were still on his legs for balance, but he was more upright. Mattie is also getting better at sitting, but he has a bit more of a tendency to fling himself backwards. They also both sometimes topple over and do faceplants, but usually either we catch them or it's in pretty slow motion, so they haven't seemed bothered by it.)

Here's James this morning, talking to Grandma on the phone.

Dirty Bib Club

Matthew may be a member of the Clean Bowl club, but he's also in the Dirty Bib club! (In fact, this particular time, I think most of the meal ended up on the bib...or his hands, or his feet, or the chair.)



PS: If you're wondering about the deleted comments from a couple of the previous posts, they're Chinese spam. At least, I assume they're spam because I can't read Chinese. If they're actually from some Chinese blog fan saying how adorable the babies are in Cantonese, then my apologies. :)

Going Places

Perhaps inspired by his brother's success, Matthew discovered today that he could entertain himself by rolling all the way across the room. Apparently we'll have to start babyproofing sooner rather than later! (And my days of being able to put him in the middle of the bed to play are probably over, too. Bummer.)

Edited to add: Mike wants me to clarify that since Matthew started out in the middle of the room, he technically only rolled halfway across the room. :)

He Did It!

Jamesie rolled over from his back to his tummy this morning -- he finally figured out how to get that arm out from under him! Yay! (It was extra exciting because I was right there to see it. I'm sure there will be many "firsts" that I'll miss now that I'm back at work, so it's fun when I get to witness one.)

Consonants

Mattie's babbling now includes lots of consonants. It's a little freaky, because he comes out with things that sound like actual words. This evening, he was looking at Stanley and said something that sounded just like "dog", and when Mike was playing with him later he said something that sounded just like "daddy." Of course, these were both mixed in with a whole lot of nonsense, so it's definitely coincidence rather than genius. Nonetheless, both of those made us do a double-take!

As we've mentioned before, James seems to be tracking a couple of weeks behind Mattie with the developmental milestones. It will be interesting to see whether James also starts with consonants soon; if so, that would definitely be a good sign for his hearing. (James vocalizes a lot now, but it's virtually all vowel-type sounds.) The audiologist was supposed to follow up with us after the MRI last week to try to schedule the behavioral hearing test, but we never heard from her. I called today and her voicemail says she's out for the next two weeks, which is a bit frustrating. We had to wait this long for the testing because babies have to be 6 or 7 months adjusted age for the audiologists to train or condition them to turn in response to sound, but we have also been told that the sooner children who need hearing aids get them, the better for language development. So, I'm a bit impatient with the delay. If we're right that he's responding to voices and hearing a variety of sounds, he might be getting enough input to start his language development, but even if that's true, I don't want to put off getting him whatever other help he needs -- especially because with auditory neuropathy, it seems like the treatment path can be unpredictable.

High Chair

The little guys are getting close to big enough to use the high chair -- although as you can see, we have to prop them up with a blanket! (Top picture is Matthew, bottom is James. We just have one actual high chair right now, so they have to take turns. We have the high-chair attachments that are supposed to turn regular chairs into high chairs, so we'll have to try those out soon.)

Matthew is doing better with his rice cereal and carrots combination; we think at least as much went down his throat as went on his bib this evening. He likes holding on to the spoon and chewing on it. The problem is that he holds on to the spoon with an iron grip, even when there's no food left on it!

We haven't tried James with the solids recently, because we wanted to see how the new formula was working. The last couple days have been good ones. So, we'll see, we might give it a try again soon if he seems interested.

James has been Mr. Smiles these days; he's such a cute and happy little boy. And we've turned some kind of corner where now he and Matthew both generally enjoy being on their tummies -- so tummy time isn't a chore any more.

Bye-Bye

Grandma and Grandpa headed home early this morning. At least they got a day or two of nice weather this time! It felt like spring for the first time this year, so Grandpa cooked some delicious fish on the grill on Friday. (And Grandma left us with crawfish pie and chocolate sheath cake in the fridge -- yum!)

We kept intending to have a Wii bowling rematch, but the Olympics interfered with our plans. :) But we enjoyed the visit very much anyhow, and only wished it could have been longer!

Life is Good

The grandparents are here again for a couple of days on their way back up North. Hooray!

We needed the reinforcements this morning -- little Matthew decided to wake up at 1 AM and again at 3 AM, and I was up at 5 AM to turn off Jamesie's pump and then up with him again at 6:30 when he woke up. (But since he went to bed around 9 PM, that's perfectly reasonable from his perspective.) We really miss those days of sleeping through the night; hopefully Mattie will return to his previous schedule soon!

Matthew playing

Matthew really likes his baby command center. There's a lot there to keep him (and his brother) entertained.

More Photos

Here are more photos from the professional photographer:

http://www.kathleenhunterphotography.com/Barr/album/

Veggie Valentines

Valentine's Day was also the boys' 9-month birthday. (I can't believe it's been nine months!) I had vague ideas about taking some Valentine's themed photos, but didn't actually get around to it. :) They would have involved our red tablecloth as a backdrop and heart-shaped boxes of candy as props.

The babies still aren't too excited about solid food. One of our babysitters mentioned that her previous family's child hadn't liked rice cereal until they started mixing it with other things, so we bought a jar of carrots and mixed a spoonful of it in with Mattie's rice cereal (bottom picture). It seemed to be a bit of an improvement from his perspective. We'll probably try it with Jamesie tomorrow.

Reading to the boys has gotten more difficult. These days they just want to grab the book and stuff it in their mouths. I've tried to redirect them by telling them to "help mommy turn the pages," but they're having none of that -- so instead I just hold the book mostly out of their reach.

The rest of our exciting Valentine's Day activities, as the parents of infant twins, involved take-out pizza and wings. Ah, romance! :)

Quick Update

James's MRI went fine today. All of the brain structures they were looking at (auditory nerve, etc.) were present and normal, which is good news. The repeat hearing test confirmed the original diagnosis of auditory neuropathy, which was what we expected. (Although I have to confess a little part of me was hoping that it had been a mistake the first time or that it had miraculously healed itself in the meantime! The doctor told us that the "healing itself" basically never happens, though. Too bad.)

So, we're still pretty much at the same place we were before -- waiting for behavioral testing to find out his hearing level. (The behavioral testing involves training him to turn around to see a dancing puppet when he hears a noise. Hopefully we'll be able to schedule that soon; he's getting to or close to an age where he should be able to do it.)

Mr. Sandman

It's been a tiring week. It was a busy time work-wise for both Mike and I, but on top of that, Matthew has been waking up at night with a stuffy nose. Whatever it is -- a low-level cold, a reaction to the dry air -- isn't really noticeable during the day, but at night, he gets congested enough that he has some trouble breathing. We've got a humidifier going in there, but apparently that isn't enough. (And sometimes we use the nose-sucker, which Matthew hates with a burning passion -- he squirms and fights and screams at the top of his lungs the whole time. It's no fun for us either, kid!)

Sometimes I just need to pick him up for a minute or two and he can sniffle and get it out of the way, but a couple of times this week he hasn't been able to get back to sleep unless he's been upright (which is to say sleeping on me while I'm sitting up, or sometimes we can get him into the swing instead). I love snuggling with my baby, but it's a lot more fun when it's not 3 AM with work looming the next day! We are looking forward to getting back to sleeping through the night!

James had an appointment with the GI doctor on Friday. (Yes, I know, I thought we were done with that one, but since James seemed to be having more discomfort with his feedings recently, we went back.) The doctor didn't seem particularly concerned about anything major going on, since James is still gaining weight and he's doing fine with the overnight feeds. But he gave us some suggestions about things to try, like giving him baby Mylanta (in addition to the Prilosec) to see if it's reflux or something else that's the problem. (Another possibility is that James also seems to have just a little occasional congestion right now. It doesn't seem like enough to interfere with his drinking, but I suppose it's possible that if he has some kind of very mild cold it could be temporarily throwing things off with his eating.)

We're still doing the new formula (Nutramigen). Mike thinks it's helping a bit, but I'm not so sure. We'll give it a little more time. The strange thing about it is that it smells like a hamster cage. I'm not saying that as a cute way of saying it smells bad -- it literally reminds us of hamsters. That doesn't seem at all appetizing, but James doesn't seem bothered by the taste, as far as we can tell.

James goes in for an MRI and repeat hearing test on Monday. This particular hearing test will most likely just confirm the auditory neuropathy diagnosis; it's unlikely to actually give us new information about how much he's hearing. The MRI is mainly to look at his auditory nerve. (Apparently in some cases of AN the auditory nerve is missing, but since we're pretty confident James can hear some things, it seems extremely unlikely that his is missing. But it's possible that it's too small or has some other issue, and apparently that information might have some treatment implications.) I guess they might be looking for other things as well, but we have not been very well-informed about the purpose of this test. James has to be sedated for the MRI, so the poor little guy can't eat anything after midnight on Sunday. (Once again, the anesthesia team appears to be completely neglecting any type of sedation for the parents. How rude!) I am a lot more anxious than I should be about this whole thing; we've been hit with bad news so many times that I'm just afraid of what else might be lurking around the corner. Mike, as usual, is more realistic and is not particularly worrying at all. (He correctly points out that James seems to be developing just fine so far.)

Edited to add: Mike noticed that if you click on the top picture to enlarge it, you can see Mattie's two front teeth!

Through Someone Else's Eyes

The photographer has a few pictures of the boys up on her blog: http://www.kathleenhunterphotography.com/blog/

G & G on the Road

Grandma and Grandpa left today (heading down south for a little sightseeing in Charleston and then onward to visit other relatives). We miss them already!

We had an unscheduled visit to the pediatrician this evening. Everything's fine, and here comes too much information, so you can just skip the rest of this paragraph. James had some discharge from his bottom (and as you probably know, that's not the usual thing since he has the ostomy bag for poop!) So we figured we should get it checked out to make sure nothing was wrong, and indeed, they said it was probably just mucus moving through (no blood or anything that would indicate a problem).

James weighed 14 lbs, 8 oz, which was probably close to a real weight this time. And his blood pressure was good at 78 systolic. The doc (one of the ones in the practice we hadn't met before) gave us a sample of a new formula to try (Nutramigen) which has even less lactose than the Gentle-ease, and might be easier on James's tummy.

I always feel a little bad when some new pediatrician has to see us -- they're probably used to your standard ear infections or sprained ankles, and here we come with this extensive medical history for our kiddo! It never seems to faze them, though, and they've all been great.

We also had a photographer come in this morning -- Mike decided that he wanted to have some professional pictures done after all. We liked the photographer and the shoot seemed to go pretty well, except that Matthew again had a poorly-timed nap, so he wasn't quite as smiley as he usually is. So, we'll see how the pictures turn out! She'll probably be posting a few online, so we'll give the link when we have it.

Saints Go Marching In

We were all set for a Louisiana Super Bowl dinner -- crawfish etouffee and King Cake. Yum! (You can see that the King Cake was halfway gone even before dinner! Eating dessert first seems like a New Orleans thing to do, right? Our friends brought over some delicious cookies, so we had second dessert, too.)

Matthew went to sleep around halftime. James stayed up until the end with Grandpa to make sure of the Saints victory, and then immediately started crying and demanded to go to bed.

There are some happy people here tonight. Who Dat!

[Other posts for today below.]

Command Center

The little guys both enjoyed some time in the exersaucer today. (Top two pictures are James, bottom is Matthew.) When we have it on the lowest setting, their feet can touch the ground so they can rotate around.

And I saw Matthew roll over from his back to his tummy this evening! (James is still sooo close, but just hasn't quite figured out how to get that shoulder out of his way.)

Cereal for James

James was not eating very well today. He was perfectly happy except when we tried to feed him, and then he didn't want much. So Grandma decided to see if he might be interested in a little rice cereal instead. He didn't seem to mind it going in, but I think it mostly dribbled right back out again!

Family Pictures

Our neighbor graciously helped us out with taking some family pictures. It's not a simple task with two babies involved! Matthew picked this morning to take a nice, long nap right at the time we were going to take the pictures. Eventually we woke him up, but that's risky business -- he can be quite cranky if he gets up before he's ready. I don't have any idea where he gets that from! :) We were lucky because he only looked a bit sleepy in some of the pictures, instead of going into a four-alarm wail. James, on the other hand, had been awake and cheerful for quite a while, so he was just about ready for a nap when Mattie woke up!

And with the yucky weather outside, we only had indoor options for backgrounds, and even with moving the furniture around it wasn't quite ideal. (Having the vase behind us on the mantle probably wasn't the best choice, for instance, and we wished we had remembered to try a few without the flash so that we didn't have the glare off Georgia's glasses.)

In any case, we're quite pleased to have some photos with all of us in them. (I think we have maybe six or seven photos that have both of us and the twins, and half of those are in the hospital!) However, now we know why the pros make the big bucks!


P.S. Mike is jealous today of our neighbors to the north (by which I mean DC, not Canada) for their 20+ inches of snow! The pictures of it are awesome, but I'm glad I don't have to do that shoveling!

Spoiled

We're getting so spoiled having the grandparents here -- and I don't just mean the babies! We wake up in the morning and Grandpa takes care of Matthew, during the day Grandma plays with the little guys, and I come home from work at night to delicious dinners. (And of course we're enjoying visiting!) We won't know what to do once we're on our own again!

The nanny said Matthew was entertaining himself today by rolling over both ways, from his back to his tummy and then back again. We have no reason to doubt her, but we haven't seen him do it yet. So maybe there will be a repeat performance this weekend.

James was getting his toes (or at least the toes of his outfit) in his mouth today, but he was doing it by leaning forward from a sitting position (while I was holding him). Pretty funny! At the doctor's today, he weighed 14 lbs, 8 oz (but Mike thinks his real weight is more like 14 lbs, 6 oz, since his ostomy bag wasn't empty.) Not bad!

Merrily We Roll Along

Baby James rolled over today -- from his tummy to his back. Hooray for James! (He did it twice, so we know it's not a fluke!) It's funny how easy they make it look once they know how to do it.

Matthew returned to the doctor's office for a blood pressure check, and he's back down in the acceptable range (90-100 systolic). While he was there, he also got his booster shots for the seasonal and H1N1 flu. (Jamesie has to go in tomorrow to get his. Poor kids -- two sets of shots in a week!)

And poor Stanley got spit up on tonight. It's bad enough that Matthew pulls his fur (I'm already starting on "gentle, pet the dog nicely", but I have no illusions that the boys will pay any attention to that for at least another year or two), but spitting up milk on his fur added insult to injury! (Actually, Stanley didn't even seem to notice the spit-up...but we sure did! Let's just say it was not an improvement over doggy smell.)

I wasted another two hours of my life over at the hospital pharmacy this afternoon. The pharmacists are incredibly nice and helpful, but I shake my fist at you, BCBS. I cannot believe the continuing insurance hassles over the very common drugs these boys are taking. I'd really like to know where these bureaucrats got their MDs, and why they feel they have the right to override our specialist's medical opinion. Actually, if I ever get around to writing to them, I'm going to ask them if it makes them happy to be hassling the family of a baby who spent five months in the hospital and has a feeding tube and no colon, over some *&!# over-the-counter reflux medicine. Medicine which happens to make the difference between our son eating and growing, versus being utterly miserable. I don't know how they live with themselves.

The bright spot is that one of the NICU doctors walked by when I was there and stopped to say hi (and of course I showed him some of the pictures of the boys that I've been carrying around since I went to the conference) -- it was great to see him.

Groundhog Day

Huh -- it's babies' first Groundhog Day and we completely forgot to celebrate it! (In fact, I thought Groundhog Day was tomorrow until, oh, just a few minutes ago.)

The higher dose of the reflux medicine seems to be working -- James hasn't been so uncomfortable with his meals. He is doing okay with the amounts, but he's not quite back up to his best days yet. (The photo is from yesterday at the pediatrician's office. We were there for another round of Synagis shots.)

And I finally got a look at Matthew's gums, and he does seem to be getting two teeth at once. (All he wants for Groundhog Day is his two front teeth!)

Big Day for Matthew

Mattie had his first taste of solid food today -- Grandma fed him a little bit of rice cereal. He was not immediately impressed, but we think he'll get used to it. :) [I love how in the second picture, James appears to be looking on in horror.]

His pirate bib, a gift from Miss Niki, came in quite handy! I think it's a tossup whether more of the cereal went on the bib or down his throat.

Also today, after two and a half months of people saying, "he's teething!" (due to the copious drool and his great enthusiasm for chomping on things), he actually does have a tooth (or maybe two, I'm not quite sure) poking through his bottom gum. Wow!

And unfortunately, his other event for the day was a blood pressure reading that requires us to send him to the principal's office...I mean, call the nephrologist. She wanted us to let her know about anything above 110, and his was 110 at the pediatrician's this afternoon. Most likely this will just mean another medication adjustment, but we were a bit disappointed since we keep hoping he'll start growing out of the meds.

We thought Matthew might be hitting a growth spurt, since he's been eating a lot the past few days. Just in the past week or so, he's definitely into the 3-6 month clothes, and even the occasional 6-9 month outfit. And lo and behold, at the pediatrician's office today, he weighed 16 lbs, 4 oz! Big boy! James was 14 lbs, 1 oz, so while he's growing, he's not quite as full-steam-ahead as his brother. (That's okay; he's allowed to do things at his own pace!)