Tilted Bed & Smiles

Posted on 5th December 2011 in NICU, Week 4

I’m back at work now, so I’m not getting to spend much time at all with the kids.  Tanya’s spending tons of time with them and is teaching them all the great things they need to know so that they can come home.  She’s taking pictures of the kids when she can, but her priority is being a great mom.

Unfortunately, the posts covering the next few weeks will have much less real insight into the twins’ lives than my previous posts.  I’ll do what I can.  Also, this post is for Dec 5th, but I’m writing it on Dec 15th.  If they were still in the womb, Dec 5th (“today”) would mark week 35.  I’m using some publishing magic to back date this post.  Hang on…

 

Cameron’s styling in his new bed today.  The new bed is pretty much just a well-formed clear bucket.  No heater, no fancy hydraulics, and no enclosure.  It has two positions: flat & tilted.  For now, Cameron’s typically in the tilted position.  That keeps the food he eats flowing down hill & probably some other really important stuff…

One convenient thing about his new tilted bed is that we get to take fun up-the-nose shots like this…

Sophia’s losing her water weight slowly & seems to be happy about life.  She’s now also wearing clothes.  Because of her PICC line, they have to “toga” one arm.  One day 10 or 15 years from now, she’ll once again wear clothes that are draped loosely off of one shoulder.  She’ll think they’re cute.  I’ll think they’re inappropriate.  Great.

Don’t EVER tell her that I think her smile in this photo looks kinda like Yoda’s smile…

Sophia can yawn with the best of ‘em.  Yoda does not look like this…

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Aerobics and New Hats

Posted on 4th December 2011 in NICU, Week 4

The twins are doing great today.  The jogging we did with Cameron yesterday was a bit much, so he lost a little weight.  We cut way back on his aerobics (and cuddle time) today to help him not burn as many calories.

I think Sophia’s water swelling is down a little bit from yesterday.  If nothing else, her new hat from “Auntie” Kymberly helps her maintain her super cuteness while she’s fighting through the puffiness…

Cameron sported his new hat too…along with a swaddle blanket, bib and a cute little clothes thing buried somewhere in there…

We spend lots of time each day trying to figure out when they might be coming home.  They still have a ways to go (like mastering eating), but there might be a light at the end of this tunnel.

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Level Up!

Posted on 3rd December 2011 in NICU, Week 4

Yesterday the twins moved to the Level 1 NICU!  If you recall from previous posts (or other references), Level 3 is the “scary NICU” and Level 1 is pretty much just a nursery.  Level 1 (also called the Special Care Nursery) is where the stable kids go to get bigger.  It’s another great step forward for the twins!

Sophia’s still recovering from her PDA heart problem and round of medicine to fix it.  She’s getting going on feeding again, but she’s only eating 4mL of milk at each meal.  Her PICC line is still feeding her the rest of the nutrients she needs direct to her bloodstream.

Cameron is now completely off supplemental heat, but he’s kept pretty well bundled up.  He’s doing well with his feedings and is now up to 38mL a meal (30mL is an ounce).

Here’s a view of their new room.  Their room is about the same size as typical home’s bedroom.  It’s much more private than the rest of the NICU and is set up for families to spend time with their kids.  Sophia’s on the left & Cameron’s on the right…

Despite his extremely strong desire to always be spread eagle, Cameron was fairly happy being swaddled.  Of course, he threw up all over this cute swaddle blanket and his clothes right after I got done holding him…

Cameron was somehow still surprised that I stuck a camera in his face…

The indomethacin that Sophia was on is designed to constrict blood vessels.  That’s how it works to close the PDA problem she had.  It doesn’t just close one blood vessel though; it tightens them all down.  A minor complication of that medicine is that it slows down the blood flow to the kidneys.  So…Sophia’s a little slow at getting rid of the fluids in her body.  While she was on the indomethacin, she gained (or retained, really) about 10 oz of water weight.  Ten ounces (same as 300g or a little over 1/2 lb) of extra “bloat” on a preemie looks about the same as about 30 lbs on a 170lb man.  That’d be like me sticking nearly 4 gallons of water somewhere on my body.  That would not be pretty.

Back to Sophia…that 10 oz of extra water weight makes her look, ummm, a little puffy…

Sophia really looks uncomfortable, but she seems to be in pretty good spirits.  Hopefully that whole “you don’t need heart surgery” is keeping her happy.  As the medicine gets out of her system over the next couple days, the extra water weight should go away too.  I’m guessing that in 4 days or so, she’ll be back to her normal self weighing in around 4 lbs.

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Praise

Posted on 1st December 2011 in Week 4

It’s been a very stressful couple of days.  I’ll get right to the point.  I’m happy to share that Sophia’s heart problem is fixed!  Here are the details…

At 11pm Tuesday night, Sophia started on indomethacin to hopefully close a patent ductus arteriosus (PDA).  The best odds the doctors gave the medicine was 50%.  If the medicine didn’t work, then Sophia would need surgery.  She got the medicine every 12 hours and got her last dose around noon today.  We were on pins and needles all afternoon waiting for the pediatric cardiology team to evaluate Sophia’s heart.

Tanya was only able to spend an hour with the twins yesterday because of an emergency operation on another kid in the NICU.  Sophia’s stats looked better yesterday than Tuesday, so we were hopeful that the medicine was working.  Today, we both got to the NICU around 11am.  We were happy to see her oxygen levels consistently near 100%…

The cardiology team showed up about 4pm.  Two techs arrived first and set up the sonogram machine.  Unlike everything else in the NICU, it looked straight out of 1990…

The techs got everything ready, then two cardiologists showed up.  The first doctor walked over to the sonogram machine, looked at the display, and said “hmmm….”  More pins & needles.  Sophia tightly held Tanya’s finger during the checkup as if she was hanging on for the news.  After an extremely long few seconds he said…

“So, her ductus is closed.”

Somehow I was expecting fanfare, fireworks, or something similar when he gave us the news.  I guess there’s not really room for fireworks in the NICU.  It was exactly the news we were hoping for.  Sophia’s PDA problem was gone.  This meant she didn’t need surgery to fix her heart.  I can’t really think of a way to explain how happy we were (and still are).  Outstanding news.

She’s still not completely out of the woods, but we have a much higher chance of everything turning out ok now.  It’s still possible for the PDA to happen again.  If that happens, then she’ll need surgery.  The cardiologists are going to check back in a week to see how her heart’s doing.  They’ll do another couple checkups before she leaves the NICU to make sure her ductus arteriosus stays closed.  They’re also going to watch a couple other minor heart things that should clear up as she grows.  She’s wearing a cannula again to get a little bit of oxygen to help stabilize her breathing.

Here’s Sophia after her checkup…

We both got to hold Cameron twice today.  We didn’t really time it, but we held him for a total of almost 4 hours.

Tanya demonstrated her Cameron bottle feeding power this morning, so I tried my hand at it later in the day.  He wasn’t interested & barfed on me to make sure I understood.

Still, he seemed to really enjoy just laying in my arms.  Here I am (looking tired) with Cameron (looking tired)…

Cameron made quite a few faces while I was holding him.  They’re pretty comical.  Here’s his pouty face…

In other things of great news, both of the kids are now at the 4 lb mark.  Last night Cameron weighed 4 lbs 2 oz and Sophia weighed 4 lbs.  Cameron’s self-temperature control is getting better very quickly.  He also is doing well enough with his feedings that they took out his PICC line.  So, all of his food now gets processed through his stomach.  Sophia’s going to start eating again tomorrow.  We’re hoping she’ll jump right back into daily improvements.

Like I said before, it’s been a rough couple days.  We can’t thank all of you enough for the love & support this week.  Sophia’s literally been the target of prayer groups, dinner table conversations, and countless other kind thoughts from all around the world.  Thank each and every one of you.

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