Days 21-22 - February 13-14, 2013

Happy Valentine's Day! Today the girls are 3 weeks old.  The last two days have been fairly eventful for both of the girls and also for Andrea. Yesterday Andrea's mom flew back home to Kansas.  It was great having her here, she was a huge help and we're glad she was able to visit with her newest granddaughters.

Since Andrea is older and bigger than the twins, let's talk about her first.  As discussed in the previous post, she got mastitis (breast infection - do yourself a favor and don't google this. you'll see stuff you don't want to see....).  She's feeling much better now thanks to Keflex (antibiotic) and a little TLC.  Today she had a consultation with a lactation nurse and scored a loaner of the mother-of-all-breast-pumps -- the Medela Symphony.  This thing is like the Rolls Royce of the breast pump world.  Anyways, she is a much happier camper now.

Let's start with Aubrey.  Here's a picture of her that we took today.

Her nurse was changing her diaper as we were watching, and she just opened her eyes and stared at us for about 5 minutes.  This is the most she has ever opened her eyes, so it was really cool to get it on camera.  Here she is with mommy's hand on her head.

I'm not sure how much Aubrey actually saw and processed, but it seemed like she was somewhat interested in us.

Aubrey is doing well overall.  She's still on the regular ventilator, and I would describe her settings as moderate.  She hasn't had any blood in her lung suction in about 5 days.  She is pretty swollen right now due to fluid retention, and is being given diuretics (medications that make you pee) to help with it.  I think if she were adult-sized she would most resemble a sumo wrestler, but I guess most babies that I've ever seen look like mini sumo wrestlers.

Her feedings have been increased to 5 mL of milk every 3 hours, and she is pooping like a champ.  One of her nurses compared the contents of one particular diaper to an elephant turd.

Speaking of turds, let's switch over to Paige.  I'm proud to say that I changed my first poopy diaper ever (that was a good 30-year streak).  Here's me vs Paige pooh.

From the picture one could draw the conclusion that I was somewhat grossed out.  I just recall being highly focused on ridding Paige's general area of anything green.  Here I am putting on the finishing touches.

I probably did a terrible job, but the nurse made me feel really good about my efforts, haha.  Rumor has it that I'll get lots of practice with this sort of thing.

Now for more important and serious things.  Paige had been switched over to the regular ventilator earlier this week, but her overall ventilation started to really go downhill today.  She was switched back to the high frequency oscillating ventilator today around noon, and has been having a rough time on that, too.  To boot, she had another echocardiogram today, and her PDA (murmur) is worse than what is was the last time it was checked on Monday.

The belief is that a combination of her PDA and immature lungs is making it very hard for her to properly ventilate.  Since she has already had two rounds of indomethacin to treat the PDA, the medical team and Andrea and I have decided that doing surgery to close up the PDA is the best step to take to help her lungs work properly.  She is scheduled for surgery tomorrow (Friday) around noon.

If you recall from previous posts, a PDA is not in the heart itself.  It is a shortcut between the aorta and pulmonary arteries.  Therefore, this is not heart surgery.  Based on my discussion with the doctors and reading about it, it seems like a pretty simple procedure as far as surgeries go.  Just make a small incision between the ribs, carefully maneuver around the lungs and other innards to find the PDA, then clamp it shut with something.  Our hope is that this will help her ventilation enough to avoid having to use IV steroids, but it seems like we are moving in the direction that IV steroids will probably happen.  See Day 9 post for a short discussion of IV steroids.

When Andrea read a story to Paige today, Paige opened up her eyes and stared at mommy the whole time the story was being read to her.

Days 18-20 - February 10-12, 2013

Sorry about combining three days in one post again.  The past three days have gone pretty well for the girls.

As I said in the previous post, they both received indomethacin to treat their PDAs (heart murmur described in earlier posts). The echocardiograms showed that Aubrey's PDA is now completely closed.  Even though this was Paige's second treatment with indomethacin, her PDA is still open but is much smaller than before according to her doctor.  That's good news for both.  I've noticed that both of their blood oxygen levels have been a little more stable the past few days, no doubt due to the improvement in PDAs.

Here's a picture of Aubrey with her celebratory "I'm-number-1-cuz-my-PDA-is-gone pose."

My parents have a picture of me doing the same thing with my thumb and index finger right after I was born.  I saw her do it, then waited patiently for 15 minutes hoping she would do it again so I could snap this picture.

Paige was a little camera shy the past few days, so I don't have many of her to share.  Here's one.

In the last post I said that Paige had been put back on the oscillating ventilator because her lungs had collapsed.  Today (Day 20) she was switched back to the conventional ventilator and has been doing well on it!  She is requiring very little additional oxygen, and her pressure settings are about what they were prior to her lungs collapsing.  Hopefully we won't have to deal with that oscillator again.

Both Paige and Aubrey are still being fed more milk through their g-tubes.  Previously they were receiving 1 mL of milk every 3 hours (1 hour feeding, 2 hours break).  Now they are receiving 3 mL of milk every 3 hours (2 hours feeding, 1 hour break).  They are getting milk that Andrea has previously pumped and frozen.  Preemies as young as Aubrey and Paige can't have fresh milk because there is some sort bacteria or virus (i think it was cytomegalovirus) that may be present in fresh milk that can make them sick, so everything they get has to have been frozen to reduce the risk of becoming sick.  Andrea pumps every 3 hours and we store everything, so we had to buy a chest freezer this weekend because we ran out of room in our refrigerator freezer.  I feel like I help run a small-scale dairy sometimes.

The picture above is Andrea looking into Paige's incubator/oven.  In addition to getting a freezer this weekend, Andrea also got mastitis.  I would hyperlink that, but everything I looked at had some crazy pictures.  If you are curious and turn to google, just know that Andrea was not even close to as bad as some of the cases you'll see online.  After starting Keflex yesterday at noon (500 mg PO Q6H x14d = me using pharmacist language) she feels much, much better.

Let's see, what else has happened.  We talked about echo, about the ventilator, about mastitis.  That's about all I can think of.  Here's some pictures.  Like I said before, Paige was camera shy, so these are all of Aubrey.

Mom's hand on booty.

Reverse bird.

Cracking open her eyes.

And since I'm typing on the desktop, here's a few bonus pictures.  This is me waking Andrea up one morning in southern Utah.  We hiked 10 miles down a creek in the middle of summer to get there. We literally had the whole canyon to ourselves, but we also learned why people don't do this in the middle of summer = hot! Probably won't be going somewhere like that for a while.

Big Sur.

Days 16-17 - February 8-9, 2013

Days 16 - 17 were largely a set back for both girls.  Let's talk about Paige first.

On the morning of Day 16 (Friday), Paige's lungs collapsed, so she had to be switched from the conventional ventilator back to the oscillator.

That dinosaur that you see in the picture above (i'm talking about the machine, not Andrea's mom - how dare you) is the oscillator.  We were hoping we wouldn't have to see that thing again.  The good news is that her lungs look a lot better in the X-rays now, and her blood gases have been better.  Here's Paige with her eyes kinda open.

The tape makes it look like she has a sweet buck tooth.  Paige's second round of indomethacin was finished on Friday, so we'll see how successful it was on Monday when her next echocardiogram is scheduled.  She's being fed 1 mL of mommy's milk every 6 hours now that the indomethacin treatment is over.

Now it's Aubrey's turn.

She's still on the conventional ventilator, but they've had to increase her pressures and oxygen a little bit over the past few days.  Her first course of indomethacin was completed on Friday, like her sister, so we'll know on Monday when they do the echocardiogram how well it worked.

She doesn't appear to have more blood than normal in her lungs when they suction her, so that's a good thing. On Saturday she had a pretty low red blood cell count, so she was given another blood transfusion.

Aubrey is getting 1 mL of mommy's milk every 3 hours.  Here she is from her mom's perspective.

One interesting thing was that on Saturday we saw Aubrey pooping.  She was having her diaper changed by the nurse and just started going.

In case any of you are curious, here's both girls' current weights (hopefully I did the gram to pound conversions right):

Aubrey:
     Day 1 -   950 grams   (2 lbs 2 oz)
     Day 8 -   1100 grams (2 lbs 7 oz)
     Day 17 - 1225 grams (2 lbs 11 oz)

Paige:
     Day 1 -   835 grams (1 lbs 13 oz)
     Day 8 -   795 grams (1 lbs 12 oz)
     Day 17 - 970 grams (2 lbs 2 oz)

Most of the weight change is probably due to fluid retention/loss.  Also, these weights are probably not totally accurate because they include all of the excess paraphernalia taped to their bodies.

Happy Chinese/Lunar New Year!  Speaking of that, apparently Paige and Aubrey are Dragon babies.  Apparently, waiting to be a Snake didn't cut it for them.

Day 15 - February 7, 2013

Day 15 saw some interesting things for both girls.  Both girls are on the conventional ventilators, and their blood oxygen saturations have been fluctuating quite a bit.  The medical team believes that these large fluctuations are being caused by both of their PDAs (heart murmurs), so their doctor decided to treat both of them with indomethacin.  They will each get 3 doses spaced 12 hours apart.

This will be Paige's second round of indomethacin.  As described in yesterday's post, her murmur is still pretty bad, so the hope is that another round of indomethacin will help.

This is Aubrey's first treatment with indomethacin.  As I described in previous posts, she was not initially treated due to her lung bleed on Day 2.  She is still bleeding a little bit in her lungs, but the doctor feels that the benefits of treating the PDA outweigh the bleeding risk.  In order to decrease the bleed risk, Aubrey was given fresh frozen plasma (the "watery" part of blood that contains clotting factors) and platelets (platelets are the framework of clots) before her first dose of indomethacin.

As a side note, the sooner indomethacin is given, the better it works.  The girls' doctor said that at this point, the indomethacin may not work all that well because the girls are now relatively old.  We'll have to wait and see....

Both girls received their breakfast of mommy's milk this morning, but they will not be getting milk while they're on the indomethacin.

Way too much text. Here's some random pictures.  This is Aubrey.  You can see the naso-gastric tube really well.  That's the tube that she gets her milk through.

You'll notice that number 17 next to her nostril.  That means the tube goes into her 17 cm (just over 6 and a half inches).  Crazy stuff.  This next pictures shows how dry Aubrey's skin is getting.

She's still under the lights to help decrease her bilirubin, so the nurses can't put any moisturizers on her.  That purple and blue butterfly-looking thing on her wrist is her PICC line.

This next picture is Paige screaming at the purple monster.

I'm sure this qualifies me for the worst father of the year award, but these pictures of Paige screaming at the purple monsters just make me laugh.  She's gonna hate Barney.  Here she is recovering eyes open after the purple monster attack.

The neurosurgeon stopped by today and examined Aubrey for a minute or two.  He doesn't think she'll need any treatment for the subdural fluid in her head.

That's about all I can remember about Day 15.

Day 14 - February 6, 2013

Day 14 was a very eventful day, in a good way.  I walked into the room, and Aubrey's oscillator was gone!!  Now both girls are on the conventional ventilator, which suggests that their lungs are getting better.

Also, Aubrey got her first meal, so both girls are getting a little bit of milk every 6 hours through gastric tubes.  Here's a picture of Paige getting fed.

 That tube goes into her mouth and down to her stomach, so no swallowing is required.  Here's Aubrey getting fed for the first time.  Oops, apparently I didn't take one of her being fed.  Oh well, here's Aubrey's head in mommy's hand.

The doctors were considering starting Aubrey on indomethacin to treat her PDA, but there was still a little blood in her lung suction so they decided to put it off for a little bit.  As we discussed in previous posts, indomethacin increases the bleeding risk, so it's usually avoided where there is high risk for bleeding.

It's kind of funny to Andrea and me how different both girls are right now.  The biggest difference between the two is that Paige absolutely HATES anyone touching or messing with her.  Here she's being messed with by the two purple monsters (gloves, which you can just see in the top left corner) and would be screaming bloody murder if not for her breathing tube.

Here's a picture of Aubrey while she is being attacked by the purple monsters.

She just goes with the flow, haha.  All of this leads Andrea to believe that Aubrey will be her little snuggle bug and Paige will be the wild child.

Well, that about sums up Day 14.  Here's a picture of Andrea reading a bedtime story to one of the girls like she does every night before she leaves.

Days 12-13 - February 4-5, 2013

Days 12 and 13 were pretty good days for the girls.  Since Aubrey is older, let's talk about her first.

Aubrey had an echocardiogram on Monday.  Her PDA (heart murmur) is still moderate in size, and her doctor said that her heart appears a little "more full."  Being more full is suggestive that the PDA is affecting her circulation, so her doctors are considering starting indomethacin if she doesn't show any signs of bleeding. When her lungs are sunctioned, a little pink is still present in what gets sucked out.

Aubrey also had a cranial ultrasound on Monday.  It showed no change from the past one, which is good.  She is also still on the oscillating ventilator.  Something you may have noted from the picture above is that her bruising is getting a lot better.  Here's another picture of her showing how her bruises are looking.

Now it's Paige's turn.  Here's a close up of her. (Sorry that it turned out a little weird. I have a new lens for my camera and I was playing around with aperture settings = wide open f/1.8, and I shot it through double-walled plexi-glass).

She had a cranial ultrasound on Monday which showed no problems whatsoever. Unlike her big sister, she did not have an echocardiogram, so nothing to report there.  Her blood oxygen saturation was a little up and down, so the respiratory therapists adjusted her breathing tube a little bit. That has seemed to help out with her respiration.

The biggest thing to report is that she got her first feeding on Tuesday! I had to go to work before it happened, and Andrea wasn't feeling well and went home, so we both missed it. She was given 1 mL (that's about 15 - 20 drops) of mommy's milk (or whatever comes out the first few days).  She seemed to tolerate it pretty well, so the plan is to keep on doing it every 6 hours. As I explained in my previous post, giving her milk is not for nourishment, but to get her digestive tract up and going and prepared for a milk diet in the future.  I'll get pictures (or video) of the feeding in the next post.

Another cool thing that happened was I got to pick Paige up on Tuesday. Her nurse wanted to change her blanket (got peed on), so she asked me to help. Both girls, especially Paige, are so small that I'm not really sure how to handle them, but I manged to scoop her up with the nurse's help and hold her over her bed while the nurse put in a fresh blanket.  Amazing how small she is.....

Here's another picture of Paige.

I thought I could end the post today with a picture of Andrea during less stressful times.  We took a trip to British Columbia this summer.  Here's Andrea on Vancouver Island focusing on getting as close to the ocean as possible without getting her shoes wet.

Day 11 - February 3, 2012

Again we had an overall good day.

Paige is still stable on the conventional ventilator, but she is pretty temperamental.  Anytime she gets touched or handled her blood oxygen saturation will fall.  I guess that's her way saying leave me alone.  Also, all of her routine labs except blood gases (every 6 hours) have been reduced to once daily.

One of Paige's doctors, Dr Javier, spoke with us about possibly starting to give her breast milk tomorrow, as well as starting skin-to-skin contact (kangaroo care) in a day or two if she continues to be stable.  At this stage of development Paige is not able to swallow correctly without choking on the liquid (not to mention she also has an endotracheal tube for breathing), so another tube would be sent down her esophagus into her stomach.  She would then be fed a few drops of milk over a few hours.  This is done not so much for nourishment, but to get her digestive tract ready for a milk diet in the future.

Andrea and I are both excited at the possibility of skin to skin contact.  Even though we look at both girls and know they are our children, I think we would have a stronger bond with them if we were able to hold them.  It's an odd feeling knowing that we've had Aubrey and Paige for 11 days, and still have not been able to hold them.

Not much happened with Aubrey on Day 11.  The X-rays of her lungs have slowly been improving. She's still on the oscillating ventilator.  Here's a video what the oscillator does to her.  I shot it in HD using a camera, so sorry if it takes forever to load.

Her PDA (heart murmur discussed in previous posts) is still being treated by fluid restriction.  Her BNP levels, the chemical that indirectly indicates how bad the murmur is, is still low (low is good).

Other than that, not much happened.  My parents flew home today, and they really enjoyed being able to see the newest additions to their growing clan of grandkids.  I'll try to get more pictures up tomorrow.