I've got no strings...

...to hold me down
To make me fret, or make me frown
I had strings
But now I'm free
There are no strings on me!

-- Pinocchio

That's right!  The boys, finally, have joined the 21st century and gone wireless!  Woohoo!

They went off caffeine (used to help encourage breathing and prevent apnea) nearly a month ago -- we got approval from their doctor to wean them a bit early.  They originally had to grow out of their dose -- after initial higher doses in the NICU, they started at home on 10 mg/kg body weight per day and, keeping the same volume of a dose per day, had to stay on it until they grew enough to be at 5 mg/kg per day.  

In other words, they had to double their size from when they left the hospital!  That would have put S at almost 10 pounds and D at nearly 11 before we could even stop the caffeine (much less the monitors).  At their 3 month/1 month well baby visit (i.e. 3 months actual age, 1 month adjusted age), our doctor agreed to let us adjust them down to 5 mg/kg by changing the dose (which consisted of going all the way from 1 mL per day to 0.9 mL per day -- ooooohhhh) for a week and then taking them off of it.  We then had to keep them on the monitors for two more weeks to make sure there were no apnea events.  Thankfully, there weren't even any false alarms during that time.  We left them on the monitors for another week at night (admittedly, we'd kind of been only keeping them on the monitors at night or when they were napping for the week or two before then because hauling around the damn things WAS MAKING US NUTS).  

At their 4 month/2 month visit last week, the doctor OK'd our discontinuation of the monitors!  Woohoo!

I thought I was going to get excessively nervous about having them sleeping at night without the monitors.  But, it hasn't been bad.  Since leaving the hospital, we never had an apnea event that wasn't associated with eating and we hadn't even had one of those in two months.  So, I think that gave me some confidence.

So, last Wednesday, we took the monitors back to the rental agency when we were in the "big town" for the boys' developmental follow-up appointment.  It was such a relief.

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So, yeah, it's been about a month since I last posted, hasn't it?  Yowsa.  Time flies!  Seriously, it's hard to describe just how much goes on and just how difficult it has been to find time to post.  I always think I might be able to write a little while I'm pumping (in my handy-dandy hands free pumping bra thingy), but that never seems to happen.  Apparently.  

So, here are some highlights from the past month:

-- S and D are 17 weeks old!  Their official 4 month/2 month birthday is today!  Craziness.  I don't know how on earth 17 weeks have already passed since they were born and 10 weeks since we've had them home.  At the same time, it's hard to remember what our lives were like before they got here.  I think I used to sleep in the same bed with my husband...

-- They're getting SO big!  S is 9 lb 11 oz and D is 10 lb 2 oz.  For their adjusted age in comparison to other VLBW (very low birthweight -- born under 1500 g) babies, their weight puts them into about the 5th and 20th percentiles (I think -- I had the numbers officially before but not on me and I'm too tired to go find them...) and their length and head circumference puts them at the 50th percentile.  So, they're pretty lean.  In comparison to "normal" 2 month olds, they're not even on the percentile scale...  Alas.  They'll catch up eventually.  They're eating a lot and growing well.  The developmental specialist and nutritionist are happy with their progress but would like to see them eating more.  So would we.  S seems to eat really well but D just won't pick up his daily volumes.  

-- That leads to the eating issue we're dealing with now.  (It always seems to be something...)  D is a crazy gassy baby.  His reflux seems to finally be under control, so feedings aren't as consistently bad as they used to be.  But, his intestinal gas is sometimes off the charts painful to him.  And, when he has to fart while eating he gets so uncomfortable and just freaks out and sometimes just won't continue on with the meal.  We can get him to calm down again by walking him around or laying him on our knees and doing bicycles with his legs.  Often that is enough to get him started again.  We've tried some anti-gas remedies of various sorts and had very little success.  His doctor has done some massage that seems to help, so we're hoping to continue that.  The nutritionist suggested some formula alternatives to try with his daily formula supplement.  

-- They are getting so interactive and engaged.  They both smile up a storm.  S was the first to do it and it just about melted our hearts when he started.  It was unbelievable.  The thing with preemies is that you feel like you're in such a long, extended "newborn-hood" and so when these developmental milestones hit you just feel like someone has FINALLY given you a reward.  It was just this sudden giant grin that spread across his whole face.  Once he figured it out, he just wanted to keep showing it off.  D did it about a week later after lots of little "almost" smiles.  His smile is kind of lopsided and shy and just adorable.  S is a big flirt smiling wide at anyone new who comes around.  D is much slower to smile so it is even more rewarding when he does it. 

-- They now coo and sorta laugh (it's like they want to laugh but haven't quite figured out how).  It's amazing how all-of-the-sudden these changes have been.  We have some friends who come over once a week and each week they're shocked at how much the boys have changed.  Their actions seem so much more intentional, now.  As if they kind of know what they're doing.  It's like some switch was triggered and they're now babies and not newborns.  It's incredible to see.

-- Sleep has been kinda blah.  Daytime naps are hit and miss.  S is good about going to bed at night and, if not bothered, would probably sleep a good 6 hours or more at a stretch.  D, on the other hand, just can't get past the "up every three hours" thing.  And, if he gets gassy in between, he's really up every two hours or so.  (S seems to be able to sleep through the gas.)  So, right now, we live our lives in shifts.  After pumping, I go to bed at 10 pm (sometimes 10:30 because I'm trying to help get the boys down) and then get up at 3 to pump again.  When I'm finished, my DH goes up to bed until 9 am and I take over.  In our "on" five hours, we try to sleep as much as possible in the bed near the boys' bassinets -- depending on the night, you can get a couple of good hour or two naps or you get lots of little 15 minute cat naps.  It is tiring. 

-- To that end, we've hired a night nanny once a week for the past three weeks.  She shows up at 10 pm and helps my DH get them down for the night and then is "on" all night and heads out at 8 am.  She's been a G-d send.  The first night, I just couldn't sleep at all and was probably more tired in the morning than if she hadn't been here.  The next two times, I actually got a decent night's sleep with one rise for pumping at 3 am, still.  But, just pump and back to bed -- much different from then taking over with the babies.  We're hoping to make this a regular occurrence until we can get them on a better schedule.

-- We've also started working with some babysitters to help me out a couple of hours several days a week.  Our plan is also to have one "date night" each week and a few hours on the weekend where we can head out on our own.  My DH is back to classes, now, (it is SO weird not to be back myself) and being constantly "on" with two babies all day and night is EXHAUSTING.  Some days are OK (for instance, they're actually both napping at the same time right now...shocking), but some days there is never a time when I can even wash a bottle.  He's exhausted from trying to work, I'm exhausted from taking care of babies.  We need a break.

-- Pumping is going pretty well, still.  I actually pump so much I blew out the motor on my rental pump!  It started to die late on a Friday night.  The rental place was closed and 90 miles away and so we spent the weekend sort of "assisting" the pump and crossing our fingers that it would work just a little longer.  Monday morning I called the rental place and they got a new one shipped up to me -- but it couldn't come until Tuesday afternoon.  In our tiny town, the pump options aren't great.  We'd staked out the pitiful single electric pumps we would get in an emergency and, if worse came to worse, I was planning on showing up at the L&D ward where I delivered the boys and begging them to let me use theirs!  But, in the end, the original one lasted just as long as it needed to.

-- My DH is so amazing with the twins.  And adorable.  When he comes home he says "I missed my babies!"  (Sometimes I'm jealous that he gets to actually miss them.  I love being with them, but sometimes I need some time away.)  I absolutely love watching him with them.  Not to get all psycho-babbly, but I have deep set "issues" from my biological father that have made it very difficult for me to accept that a man can actually be a loving daddy.  (He was one of those fathers who proudly pointed out that he'd never changed a diaper, for instance.  And, when I was a kid, he was only interested in me when he could show me off or if he couldn't get a date.  I haven't spoken to him in 21 years.)  Just thinking of how much my husband loves his sons is making me cry right now.

-- What else?  I could go on and on about how their personalities are emerging and how amazing they are.  The developmental specialist is very happy with their progress and says that, neurologically, they're looking great.  They hover somewhere in between their adjusted and actual ages in terms of developmental milestones.  The physical therapist says that their movements and progress is excellent.   S is having some neck issues and a bit of a flat head problem.  We've been working on it all the time and it's getting a lot better, but not quite quickly enough and he's going to have to have some regular PT and, potentially, wear a helmet for a bit (BLAAAAHH). 

-- I'm sure there is more.  I really wish I could find the time to write short posts so that I didn't have to do a giant dump all at once and could actually go into things more. 

-- Uh oh.  Seems like D is starting to wake up!  Hmm... not quite, yet.

Happy 4 month/2 month birthday little ones!!

S on the left, D on the right