Thoughts and Prayers

Posted on 29th November 2011 in NICU, Week 3

Yesterday Sophia was having a tough time maintaining her oxygen levels.  I left out a few other details.  The rest of the story is that Sophia has some heart issues. A few days ago, they heard a heart murmur during one of her routine checkups.  The pediatric cardiologist did an echocardiogram (sonogram of the heart) and discovered that Sophia had a ventricular septal defect (VSD).  In short, they found a gap in the muscles in the lower chambers of her heart that was letting blood “leak” from one part of her heart to another.  (That’s not good.)

It’s not uncommon for preemies to have VSDs and it’s fairly typical to grow out of them.  So, they planned another echo for today to see how things were progressing.  The good news is Sophia’s VSD has closed – so there’s no longer a hole in the lower chambers of her heart.  They found a new issue though.

Back when the kids were first born, they both had an issue called patent ductus arteriosis (PDA).  The ductus arteriosus is a bypass blood vessel that allows the baby’s blood to skip over the lungs when they’re in the womb.  Since none of us breathe air (that’s where the oxygen is) until we’re out in the real world, the ductus arteriosus allows the umbilical cord (mommy) to provide oxygen to a baby’s bloodstream.  It’s supposed to close right after birth.  It’s very common for a preemie’s ductus arteriosus to not close on its own.  When it doesn’t close, it’s called PDA.  Kids with PDA have a harder time getting oxygen into their blood since a big portion of their blood bypasses those oxygen-rich lungs.  If PDA goes uncorrected, it can lead to all kinds of badness, including heart failure.  In other words, PDA is bad.

Both twins had PDA when they were born.  They each got 3 days of medicine (indomethacin). In both kids, their ductus arteriosus closed, so the PDA issues were gone.  Win, right?  Well, after Sophia’s recent VSD happened apparently her PDA is back (acronym city, I know).  So, even though the hole on the inside of her heart is closed, there’s effectively a hole on the outside of her heart that’s keeping her from getting oxygen to her blood.

She’s really, really cute though…

Because of Sophia’s PDA, the left side of her heart has swollen and is larger than the right side.  The doctors laid out the possible treatments for us today.  Sophia could go through surgery to correct the problem.  Surgery has all kinds of scary possible complications for a kid that was just two cells 34 weeks ago (well, really about 32, but who’s counting).  She could also get another round of the medicine.  There are possible complications with that too (GI tract ruptures & others).  The biggest gotcha with the medicine is that it’s not as effective in babies as “old” as Sophia.  Given her state now, it’s extremely unlikely that the PDA will heal on its own.

Tanya & I really couldn’t stand the thought of Sophia going in for heart surgery (the PDA isn’t really IN the heart, but close enough).  The cardiologist & neonatologist (NICU doctor) said that her condition isn’t bad enough today that she needs to get rushed into surgery.  So, after weighing all the scary bad things about each option, we decided to give another round of medicine a try.  The doctor estimated a 50/50 chance that the medicine will help the PDA.

They’ll be watching Sophia like a hawk over the next couple days.  She has to stop her feedings and go back to nutrients through her PICC line.  If her conditions worsens, she may not be able to wait to see if the medicine helps.  It’s possible that the medicine will help some, but not entirely fix the PDA.  It’s also possible that the medicine won’t help at all (I’m still not sure how her “age” can decrease the effectiveness of the medicine, but apparently there’s some doctor magic that only works on early preemies).

PDA isn’t something that we can just blow off & let be.  It has to get fixed.  So, here’s the plan.  Medicine for the next couple days.  Thursday will be an other echo.  We’ll see Thursday if Sophia needs surgery or not.  She could be in surgery on Friday or Saturday.  It could always be worse, but this has us pretty much shaking in our boots.

 

As part of her monitoring, Sophia has to get blood drawn quite a lot.  This is her heel during a blood draw…

On a lighter side, Cameron says: PSSST!  REMEMBER ME TOO!

Cameron’s doing extremely well.  His health is an amazing blessing.  He’s now in clothes!  They have him swaddled and they’re weening him off of his heated playpen.  I held Cameron today and Tanya held Sophia.

In writing this, I took a few minutes to look back at some of my earlier posts.  Both of the twins are now approaching 4 lbs.  If you compare them to some photos shortly after their births, it’s amazing the difference that just (almost) 3 weeks has made.

Normally, I scrub these posts for editing errors.  I’m just not in the mood tonight.  It’s time to go be with Tanya.

Thoughts, prayers, love, karma, good tidings…whatever you have, Sophia can use them.  Thanks.

comments: 17 »

The Good, The Bad

Posted on 28th November 2011 in NICU, Week 3

Cameron was doing really well today.  Sophia, not so much.

They were both sleeping when we got to the NICU today.  It was time to change their diapers & feed them, so we slowly woke Cameron up first.  He & Tanya share the same distaste for waking up…

After Tanya worked some magic on Cameron (diaper, temperature, and a little bit of lovin’ – I documented it all), she moved over to take care of Sophia.  Cameron was so happy (ok, maybe he doesn’t mind waking up all that much), that I just had to take some photos.  Every time I said his name (“Hi Cameron!”), he’d light up and smile.   It can’t be even remotely possible that they know their names already, right?

Cameron seemed easy to take care of, so I offered to hold him first.  Sophia initially was excited about Tanya’s attention, but eventually had some issues.  She woke when Tanya changed her.  Once Tanya started holding her, it looked like Sophia was really fighting to stay awake.  Sophia was definitely happy to see Tanya – they did lots of smiling at each other.  Tanya sang to Sohpia and she just loved it.  After a while, she’d open her eyes to look at Tanya, then slowly close them.  I thought Sophia was just really enjoying her nap.  It’s tough to decide between mommy and nap, you know?  Within about 15 minutes, Sophia started to really have a hard time maintaining her oxygen levels.  For a while, they hung out in the “low, but safe” range.  It wasn’t too long before they fell pretty low though.  Tanya was able to get Sophia to bring her oxygen levels back up, but her levels kept dipping low.

Sadly, Tanya had to put Sophia back in her playpen.  Tanya & Sophia’s nurse gave Sophia some great attention and finally got Sohpia’s oxygen stabilized back in the “safe” range.  Still, for at least an hour later, Sophia’s oxygen levels were on the low end of safe.  I’d hate to see it, but it wouldn’t surprise me if Sophia’s back on a little bit of oxygen help tomorrow.

The good news is Sophia’s doing really well with her feedings now.  It sure looked like the oxygen thing wore her out though…

Cameron did some great cuddling with Tanya tonight.  He did his normal “look at her with loving eyes” thing for a while, then completely zonked out.  When he’s “really” sleeping, he doesn’t seem to like to hold his mouth closed yet.  It’s a pretty good indicator that he’s out & not faking it…

My visits with the kids are about to get drastically cut down.  I’m starting back at work tomorrow, so I’ll probably not be able to see them every day.  That also probably means you won’t be seeing daily status posts any more.  Don’t be alarmed though!  Just because we cut back on posts, doesn’t mean they aren’t doing well.  Tanya got the thumbs up from her doctor today to start driving again, so she’ll be spending lots of time at the NICU with the kids.  As I pick back up at work and we get closer to the kids coming home, Tanya & I will definitely get much more busy.  We’ll try to keep everyone up to date on how the kids are doing, but there’s only so much time in the day.

So, it was a pretty scary day for us with Sophia.  In the grand scheme of things, it’s probably not a big deal.  It’s pretty hard to see that right now though.

It’s easy to forget when they’re doing well, but the kids are in the NICU for a reason.  They’re not supposed to be out yet and they still have some work to do before they can even think about coming home.  They’re at 34 weeks gestational age today.  Even if they were born today, they’d still be 6 weeks early compared to a full term kid.

Here’s hoping for a better tomorrow…

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Tubed Noses

Posted on 27th November 2011 in NICU, Week 3

Sophia’s feed tube is now in her nose. I didn’t notice. Tanya said that one day Sophia’s going to dye her hair purple & I’m not going to notice. That’ll be great.

When we walked up to our kids’ playpens today, there were two nurses around Cameron.  They both looked pretty, ummm, taxed.  When they noticed us, they both lit up with full on ear-to-ear smiles.  “WE ARE SOOO HAPPY TO SEE YOU!”  Apparently Cameron was well past ready for some attention from Tanya.  Overnight, Cameron learned to talk and was yelling “I WANT MOMMY!  I WANT MOMMY!” at the top of his lungs.  Nonstop…

Sophia was much more princess like…

Once Tanya asked Cameron what his deal was, he pretty much chilled with the crying.  A cute hat and the giant orange chunk of (BPA-free) silicone Tanya put in his mouth also helped…

We checked again.  Yup.  All the kids’ concerns melt away as soon as Tanya holds them.  It’s completely magical.  You really should see her with them.  She has some serious telepathic voodoo she uses with them.  I can’t even describe how much they love her…

So far, I’m ok at taking photos of the kids.  I’m also pretty good at making them squirm.  I’m the master at making their stomachs upset.  I do get to spoil them a little bit though.  They don’t get to hang out with igloo-like blankets ever…unless I’m taking pictures of them…

They both have learned to tell when we’re leaving.  The last couple times we’ve left, they both start wailing.  They’re smart.  Crazy smart.  Their crying pretty much means we can’t leave.  Here’s Sophia as soon as we reached for the button to close the lid on her playpen….

It’s really strange…if Tanya hears the kids cry, she instinctively wants to comfort them.  Not 3 weeks ago, I couldn’t stand the sound of kids crying.  Now, when our kids cry my instinct is to ignore them for a bit, quietly peek to make sure they’re not dying, then let them cry some more, then make fun of their wussy crying.  I have some learning to do.

I used an old trick my grandmother told me about and gave the kids some brandy.  Put ‘em right to sleep.

(For the child services people out there that are reading this, I absolutely did not feed my kids any alcoholic substance. My grandmother didn’t tell me about that child rearing “technique.”  If you don’t see the humor in my joke, then go away.)

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No More Oxygen

Posted on 26th November 2011 in NICU, Week 3

Some great news today – Sophia ditched her oxygen!  Both of the kids are doing really well today.  Cameron’s still working on his calorie-boosted 25mL feedings.  Sophia’s doing pretty well with her feedings (but still has a ways to go there).  Now that Sophia made it past the oxygen hurdle, I’m guessing other “systems” will start to quickly follow.

Their playpens are now quite a bit closer together.  If we both hold the kids now, they’re only a few feet apart.  That close, we were able to really compare them for the first time.  When I compared them across the room before and when I looked at their pictures, I always thought Sophia was much smaller than Cameron.  They’re actually extremely close in size.  Cameron’s face is a little taller & thinner than Sophia’s, but not by much.  One day soon (well, “soon” in the grand scheme of things), we’ll have them home sleeping in the same crib.

Cameron had a swollen tummy after one of his feedings today.  To make sure everything was ok, he got a visit from the giant X-ray monster again.  His tummy X-ray results were great, so his feedings continued tonight.  Here’s the X-ray monster swooping in on Cameron’s playpen…

I did some serious hogging of the baby hold times today.  To make sure I could keep Cameron for a long time, I hid him under my shirt.  Here’s Cameron screaming for help…

Sophia has a nose!  Here’s proof…

WHY IS THIS FEED TUBE STILL HERE! MAKE IT GO AWAAAYYYY!!!!!

UGGGH! MY SISTER WON’T STOP COMPLAINING ABOUT HER TUBES!!!

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Daddy’s Back!

Posted on 25th November 2011 in NICU, Week 3

I’m back to 100% after a little stomach bug.  So, I got to visit the kids today with Tanya.  I only missed two visits, but it’s amazing seeing the differences in each of them. Their weights aren’t changing drastically each day, but they are definitely making big progress.

When we got there, Sophia was completely zonked out…

Cameron was partially awake, but wasn’t to fond of me sticking the camera in his face.   NO PICTURES PLEASE!!!

Here’s some progress on Cameron…it’s an innie!

Tanya held Cameron for about 45 minutes, then I got some serious cuddle time.  I held him for about 40 minutes – the most I’d held either of them so far.  Cameron looks all cute & cuddly here.  However, after his feeding (25mL through his feed tube) and some rocking by me, he practiced his projectile vomiting on me.  It reminded me of that scene from the Exorcist

After holding him upside down and shaking out all the remaining puke (not really), I cleaned him up with the amazing help of his nurse and put him back in his playpen.  He looked smug.

Until he realized…

ON NO!  THAT WAS MY DINNER!!!!!

Alternate captions for that photo, as suggested by others are:

  • You’d think they’d find a better place to put this tomato soup in than my nose….
  • Is that the new iPhone 4s?
  • (your caption here…)

Knowing that he wasn’t going to get any more food, he gave up and fell asleep…

Any time Tanya holds Sophia, she’s either locked on Tanya’s eyes or in one of these super deep, drool all over the place sleeps…

Sophia tolerates me holding her.  Mostly…

Back in her playpen, Sophia was looking prissy.

Once Tanya came over to see how Sophia was doing, Sophia woke up and had a staring contest with Tanya…

Sophia doesn’t seem to mind the camera.  She might even tolerate it more than she tolerates me…

Sophia’s oxygen is now on the lowest setting.  The doctor told us that there’s a good chance Sophia’s will get her cannula removed tomorrow.  I’m hoping to get some shots of her tomorrow without the cannula.  Check back soon!

comments: 2 »

Thanksgiving

Posted on 24th November 2011 in NICU, Week 3

We spent a big portion of our Thanksgiving day at the hospital.  Why would we be anywhere else?  I’m still fighting a stomach bug, so I stayed away from the NICU again today.  Tanya got some serious cuddle time though and saw some great milestones.

Cameron was awake for Tanya and really enjoyed their cuddle time.  Tanya gave him his first self-powered feeding ever.  So that they can monitor his progress, his first feeding was with a bottle.  Armed with 21mL of milk in that bottle, Tanya convinced Cameron to drink a mighty 3mL on his own.  That’s way better than I was doing at a 33 week gestational age…

It still amazes me to see Cameron (well, Cameron’s photos) without his cannula in.  I can’t wait for Sophia to get hers out too.  Our kids seriously have the cutest noses in the galaxy.

Sophia was really upset that I couldn’t visit her in the NICU.  She let Tanya have all those saved up tears…

Sophia’s getting going again on her feedings.  She was pretty, umm, “plugged up” early in the day, so she got a little extra help filling her diaper.  By the end of the day, she was tolerating her 6mL feedings.  She’s a little behind Cameron now with breathing and feeding, but little baby girls have a tendency to finish very strong in the NICU.  Several nurses have told us that they wouldn’t be surprised if she catches up to Cameron in the next couple weeks.

Once we got home, Tobie let us know that he was ready for Thanksgiving dinner…

It was by far the fastest prep we’d ever done for a Thanksgiving dinner, but it reminded us to pause and think of all the amazing things in our lives.  To get here, it’s taken a wonderfully supportive family.  We’ve ditched out on countless family gatherings over the last 10 years in our pursuit of having kids.  We undoubtedly have some catching up to do.  Our network of friends literally around the world has been incredible.  We were lucky enough to have the best fertility team in the country on our side.  We were also lucky to have an amazing perinatologist to help Tanya brave her high-risk pregnancy.  The NICU staff has been awesome.  We’re also lucky to have solid day jobs and our software company consistently doing well enough to help pay all those bills.  There’s no end to the thanks we could offer.

It’s absolutely amazing to have two children of our own.  Next year, we’ll have four place settings (and some green vegetables on our plates)….

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Two weeks!

Posted on 23rd November 2011 in NICU, Week 3

The twins are two weeks old today.  I’m feeling a little sick today, so I stayed away from the NICU.  Tanya still can’t drive (still recovering from her surgery), so I drove her to the hospital and hid far away from the NICU while she visited with them.  Tanya was able to spend almost 5 hours with the kids today, but had to break up her cuddle time between this afternoon and night because of the kids’ schedules.  I’m a little confused why Sophia couldn’t come out to play this afternoon, but it all worked out.

Since I steered clear of the NICU today, Tanya was the special guest photographer for the kids.  Thanks, Tanya!

Cameron’s still at 18mL per feeding, but he started getting a fortifier added to the breast milk to increase how many calories he’s getting.  Sophia’s still at 6mL today, but she’s handling it well.  If she still tolerates that amount tomorrow, the rumor is they’ll increase her feedings.

Cameron was looking extra cute today.  I’ll give you a hint why…NO CANNULA!!  For now at least, Cameron’s completely off any supplemental oxygen.  Now if we could just ditch that feeding tube…

Sophia found her nose today…

Sophia also found the camera lens that Tanya kept sticking in her face.  Any time Tanya talks, sings, or looks at her, Sophia just locks on to Tanya.  Sophia really, really likes Tanya’s singing.

Tanya also shot some video of the twins.  Sophia did a great job of paying attention to Tanya (and the camera).  Cameron just showed us all what preemie hiccups look & sound like…

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Cuteness Everywhere

Posted on 23rd November 2011 in NICU, Week 2

The twins were doing great today.  Cameron’s still gaining weight quickly.  Sophia started back on her food, although she’s lost a little weight since yesterday.  They both really enjoyed being held today.  Most importantly, they did some serious posing for the camera.  Here’s the fun!

Bless you!

Psssst….I’m cute…

Sophia locked eyes with Tanya as soon as they cuddled.  An earthquake happened and neither one of them even blinked…

I have a feeling that Cameron’s not going to like being swaddled when the time comes.  He sleeps just like me…he takes up as much of the bed as possible…

Cameron doing pullups on his cannula again…

Cameron’s feedings got bumped to 18mL each time.  He strategically gurgles up just enough to coat his mouth with some cake and not enough for his nurses to count it against him.  (I’m not sure why he likes that, but whatever makes him happy I guess.)  At this rate, he’ll be doing a shot of milk each time before long…

The raisins are still hanging around…

After he got his meal, Cameron went right back to his favorite position.  STRETTCHH!

Sophia got a new bracelet today (my wedding ring)…

Sophia also tried on Tanya’s engagement ring.  It might be just a little too big for her still…

Sophia’s little round of food intolerance a couple days ago meant that her feedings got cut back to 6mL.  Don’t worry though, they both are “fed” all the additional nutrients they need through one of those many tubes directly into their blood.  Here’s Tanya getting ready to feed her…

Cameron wasn’t quite so gazing during his cuddle time.  As soon as Tanya cuddled with him, Cameron went into hibernation and didn’t wake up until I got him…

Cameron was completely out.  He didn’t even do any cannula pullups (which he’s learned to do in his sleep)…

Think of this as Cameron’s snack bar.  He may one day open his own snack bar.  Hopefully it doesn’t look like this…

TURN OUT THE LIGHTS!!!!!

Cameron’s little fingers…

Cameron behaved for the photos with me.  As soon as Tanya put down the camera, Cameron asked to cuddle with Tanya some more…

YAAAWWWNNN!!!!

Hey, have you seen my neck?  I can’t seem to find it…

He’s thinking about something here.  It might be the solution to world peace…or it might be poop.  You decide…

 

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Happy Thoughts

Posted on 22nd November 2011 in NICU, Week 2

The kids had a great day today.  Tanya really needed some cuddle time with the kids and she got it. After Cameron learned he was going to get to spend an hour cuddled with Tanya, he had one thing to say…

NO WAY!!!!

Tanya can’t stop smiling when she’s holding them…

Cameron’s feedings got ramped up to 14mL (almost 1/2 oz).  The feeding syringe looked giant compared to his last one…

Cameron got his first Gershwin concert tonight (via iPhone).  I chose this photo of him because it made it look like he didn’t hate it.  I’m not sure he’s quite ready for Gershwin…

I can’t tell if the kids’ expressions are on purpose or just involuntary muscle movements.  Either way, Sophia kept doing cute little poses for the camera.  She had her vent tube removed from her mouth, but she was a little coy about showing off her chin…

She got distracted for a bit by her cannula, so I was able to steal a couple shots showing her chin without the feed/vent tube.  Her oxygen line kept slipping out of its little holder this afternoon.  So, all the slack kept disappearing and it yanked on her face pretty regularly.  She wasn’t a big fan…

Sophia’s foot…is small.

If you hadn’t noticed in the earlier pictures, Sophia’s starting to show some cute fat in her cheeks now.  Yesterday’s skin blotchiness was back a little, but wasn’t too bad.  I keep trying to guess at her hair color.  Today I thought it looked darker than it normally did.  She doesn’t seem to be too worried about it though…

Sophia asked her nurse to hold her butt while she did some crunches…

Sophia will probably ditch her cannula sometime over the next couple weeks.  Until then, her wrapped in a pink fluffy blanket (with her cannula) is the cutest thing in the world…

Here’s Sophia trying out part of Cameron’s favorite sleeping pose.  She might also have been practicing her “PICK ME!” for when she starts school…

The blue thing on the left side of the photo below is an IV line connector.  Sophia’s hand…is small.

Sophia hadn’t really smiled much until today.  Here’s Sophia dreaming about going home…

comments: 3 »

Bump in the Road

Posted on 20th November 2011 in NICU, Week 2

We just did a quick visit today with the twins. Today wasn’t their best day. Based on how they were doing, we decided to leave them in their playpens (mostly) uninterrupted.  We did clean them up a little and change their diapers, but there wasn’t any cuddle time.

Sophia took a nap during shift change this morning and woke up with very blotchy skin. Her stomach also wasn’t tolerating her feedings.  She had a bunch of gas trapped in her GI tract, so they stopped her feedings.  They did a chest X-ray and a whole battery of blood tests to rule out all kinds of possible bad things.  Most of the test results were back and nothing showed abnormal.  To help remove the gas, they put in a bigger stomach tube that acts like a vent.  Call it an auto-burp tube (it doesn’t make any fun sounds though).

They also did a culture on Sophia’s oozing eye.  The first part of the test came back normal, so (thankfully) there are no organisms growing in her eye.  Seriously though, kids this small shouldn’t have parasites!  The actual culture part of her eye ooze test won’t be back until at least tomorrow though.

The nurses didn’t come out and say “don’t hold your kids,” but they hinted that the kids needed to stay in their playpens.  So, against every bone in Tanya’s body, we didn’t take them out to play.

Larry & Sandy stopped by to see the kids again.  This time I remembered to bring a wider angle lens to get some snaps of everyone.  Here they are with Sophia…

Here’s everybody with Cameron…

Sophia was (mostly) asleep, but was making all kinds of unhappy faces.  Her skin color was much better than this morning, so hopefully things are on the swing back up…

When we first got to the hospital, Cameron was doing well except for not digesting all of his food at one of his earlier feedings.  Tanya popped the lid on his playpen and tried on his new hat from Sandy’s sister Joanne.  Cuteness is here…

We did get to pop the lid on Sophia’s playpen to change her and check her temperature.  She wasn’t overly unhappy today, but she wasn’t really smiling about anything either.  She wasn’t in the mood to try on her new hat.  Hopefully soon…

Sophia has a temperature probe constantly hooked up to her.  That probe feeds data to what’s probably a hundred thousand dollar specialized computer monitoring system.  To make sure that $100,000 system is correct, they take the twins’ temperature every couple hours with a $3 digital thermometer.  I’m guessing this is really just a test to see what kind of mood the kids are in.  Sophia hates getting her temperature taken, even when Tanya or I do it…

Look at Sophia’s giant foot!  It’s actually small.  Really, really small.

After Cameron tried on his new hat, he decided to throw up all over the place.  He was laying on his back, so it didn’t go well for him.  I’ll spare you the details, but Cameron was extremely unhappy.  Tanya cleaned him up (with the bulb sucker thing & other torture devices) and got him settled back down.  It took about 30 minutes, but Tanya convinced Cameron to go to sleep.

It wasn’t all bad news & unhappiness today though.  Cameron’s putting on weight very strongly.  He’s up to 3 lbs 10 oz now.  Sophia’s still gaining, but slower than Cameron.  She’s up to just over 3 lbs 2 oz.  About an hour after Cameron’s puke-fest, he’d settled down enough for him to get his regular feeding.  He’s still getting 10mL every 3 hours.  If he gets more consistent at digesting that amount, they’ll ramp it up in the next few days.

It was horrible leaving them today.  The last thing either of us wanted to do was leave them in their playpens when they felt bad.  It was especially hard for Tanya.  We’re really hoping tomorrow will be a better day for them.

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