Day 36 - February 28

I would wait to make this post tomorrow, but we got to hold Aubrey (for the second time ever) yesterday, so I guess I can post some pictures to keep parents/in-laws happy.  Here she is with mommy.

It was much easier holding her this time around without that darn breathing tube.  She was able to get a lot more comfortable, as you can probably tell from the picture.  Here's a picture of Aubrey and daddy.

The occupational therapist (OT) made another visit to Aubrey this morning, and after a better look at her leg the OT thinks her knee might be a little twisted also.  My understanding is that one of Aubrey's doctors requested an orthopedic consult with an orthopedic surgeon so that we can get a better understanding of why her foot/leg is a little twisted.  I'll update as I find out....

I didn't take any pictures of Paige the last few days.  We're mostly trying to leave her alone so that she doesn't have problems on the conventional ventilator.  For anyone interested, her current ventilator settings are PIP 29, PEEP 8, BPM 25, oxygen 30%.

Aubrey is on a flow rate of (looking up at settings...) 6 L/min, 28% oxygen on her nasal cannula.

Paige's feedings are up to 6 mL every 3 hours (4mL previously), and Aubrey's milk is being fortified by 10% (5% last post).

In other REALLY GOOD NEWS both girls had their first eye examination this morning.  Neither girl has any sign of retinopathy of prematurity (ROP).  They still could develope ROP, but for now are OK.  I think they'll have another eye exam in 2 weeks.

Weight time:

Aubrey:
     Day 1 -   2 lbs 2 oz
     Day 8 -   2 lbs 7 oz
     Day 17 - 2 lbs 11 oz
     Day 27 - 3 lbs 1 oz
     Day 36 - 3 lbs 4 oz

Paige:
     Day 1 -   1 lbs 13 oz
     Day 8 -   1 lbs 12 oz
     Day 17 - 2 lbs 2 oz
     Day 27 - 2 lbs 10 oz

     Day 36 - 2 lbs 13 oz

According to an app on my phone, if they were still inside Andrea they would weigh about 3 lbs 12 oz

Days 34-35 - February 26-27

Yesterday and (so far) today have been really good to both girls.

Aubrey first today.

Yesterday she was extubated! In case you don't remember what that term means, yesterday Aubrey's breathing tube was taken out.  She now has a nasal cannula that gives her extra pressure and extra oxygen.  Here's a picture of her without her breathing tube.

It's not a very flattering picture of her, but is shows all of her tubes really well.  That big clear thick tube that goes across her face under her nose is the nasal cannula.  It has two prongs for each nostril.  The tube above it that goes into her left nostril is the feeding tube.  The tube that goes into her mouth is a gastric tube.  It goes into her stomach.  The reason she needs the stomach tube is because the nasal cannula forces a lot of air into her nose, some of which goes down into her stomach.  The gastric tube is used to release the air that gets trapped in her stomach.

Aubrey has been doing very well since her extubation.  Her oxygen levels have been really stable, and she seems a lot more comfortable.  Now that she is extubated, she's been crying a little and making some other random sounds.

We've also been giving her a pacifier since her extubation, and she really likes it.  Here's a picture and a video (her hair is really funky because I started to mess around with it, haha).

With that pacifier in her mouth, she seems to forget all of life's worries, and every time it is taken out of her mouth she lets out a little cry.  Here's a picture of her today after a nice hair shampoo from her nurse.

This morning the occupational therapist came back.  She said that Aubrey's official foot diagnosis at this point is everted foot.  She showed us some exercises we can do to help her out, and also made a cool little splint that she'll be wearing on for 3 hours and then off for 3 hours.  Here's her splint.

Her feedings are being increased to 20 mL every 3 hours (up from 18), and her milk is going to be fortified to ensure she is getting enough calories.  In general, preemies can't be given enough milk to get the amount of calories they need because it would require too much fluid.  Eventually, she'll be given enough fortifier to increase her calorie intake by 20%, but for now it will be a 5% increase in calories to make sure she tolerates the fortifier.

Aubrey has had good blood gas tests (used to determine lung function) over the past 24 hours, so her heal sticks (literally stick a lancet in her heal to get blood for lab tests) are being changed from every 6 hours to every 12 hours.

Andrea and I are probably going to get to hold Aubrey today.

Paige's turn.

Apparently she got a little jealous that her sister was extubated, because when we came into the NICU today she was off the oscillator and on the conventional ventilator!  The room is so much quieter now. Here she is wide awake to greet us when we came in. She's a cute little thing.

Here's mommy cupping her head and legs.  That screen in the upper left of the picture is part of the conventional ventilator.

Here's another picture of Paige and mommy.

She had a good blood gas after the switch to the conventional ventilator, so hopefully she'll continue to improve and won't have to go back on the loud oscillator.

Paige's feedings have been increased to 2 mL every 3 hours (up from 1 mL every 3 hours).

Here she is playing around with her fingers and mouth.

That's about all I can think for today's report.

Days 31-33 - February 23-25

Sorry to have gone so many days without posting.  I was trying to wait for a specific milestone for the girls, but it hasn't happened yet.

Let's do Paige first.  She's been really swollen the past few days.  This picture shows it pretty well.

It looks like she doesn't have a neck.  Dr Sebald and I discussed the swelling in relation to her overall health, and said that they were trying to find a balance between too much and too little fluid in her.  From the standpoint of her heart and circulatory system, she needs fluid.  However, her lungs need to be dry in order to function correctly, which requires less fluid.  It's hard to get just the right balance in a baby as small as her.

Based on X-rays from the past few days, Paige's lungs appear to be slowly improving.  She's still on the oscillator and is still slowly weaning (current settings as of this post are MAP 13, Amplitude 26, oxygen 27%).  According to her doctors she will probably remain on it for at least another week. It will be nice when we get rid of that noisy oscillator, but for now it's doing a fine job of keeping Paige alive.

Paige is now getting 1 mL of milk every 3 hours (up from 1 mL every 6 hours last post).  Like her sister, her feeding tube had to be pushed down from her stomach into her intestines because the milk was just sitting in her tummy and not moving down into her intestines.

Aubrey's turn.

She continues to progress a bit faster than her sister.  She is on the regulator ventilator, and her settings are very low (PIP 18, PEEP 6, 20 bpm, % oxygen in high 20s).  The plan is to extubate her (take out the breathing tube) on Tuesday, today's posting date!

In order to give her the best shot at having a successful extubation, she is getting a 3-day treatment with a steroid called hydrocortisone.  The rationale is that the steroid will reduce the swelling in her airway and make it easier for her to breathe on her own.

Aubrey is now getting 18 mL of milk every 3 hours (up from 14 mL last post), which is basically full feeding for her.  Her IV nutrition is running at the lowest rate possible just to keep the IV line open in case it is needed for an emergency, so she is living off milk now.  As unpleasant as pumping has been for Andrea, she is encouraged that her milk is actually being put to good use.

It appears that Aubrey's left foot may have gotten a little twisted up when she was inside mommy.  A nurse noticed it a few days ago, and an occupational therapist came in for a quick look on Monday.  Basically, her left foot is extremely pigeon-toed (as opposed to penguin-toed) and the outside of her foot points downward.  When I asked if she has a club foot, I was told that she probably does not.  We'll most likely have to do some foot exercises with her to help her straighten out and she might require a splint or a cast.  The occupational therapist said that these things can usually be corrected in a few months.  You can kind of see her left foot pointing outwards in this picture.

If you look closely at the picture above, you'll see something kind of funny. Both girls get extremely irritable when they have wet/soiled diapers (maybe this will help them potty train really fast?). Aubrey was throwing a fit a few days ago, so we figured she had a wet diaper.  When we checked her, she had half crawled out of her very wet diaper.  Here is another angle of her trying to escape the clutches of the nasty wet diaper.

After laughing at her Houdini tactics long enough to get a few pictures and call over some other nurses to see great escape, we helped her out of her diaper and into a new one and she was a much happier camper.

Days 28-30 - February 20-22

I'm down at the NICU right now and don't have my laptop, so I'm posting this from my phone. Hopefully I don't make too many errors.
Let's start with Aubrey tonight. Her sputum (lung funk) culture ended up being positive for Staph aureus on Wednesday. Her doctor on Wednesday decided not to start antibiotics because (1) it wasn't MRSA (the hard to treat variety of Staph aureus) and (2) because Aubrey was showing no signs of lung infection.
I came into the NICU on Thursday and found out that she had been a little less stable that day, so her doctor decided to start her on a seven-day treatment of a medication called oxacillin. As of today, Friday, her sputum has changed color from yellow to white.
She is still slowly weaning off the ventilator. PIP/PEEP is 23/6, rate is set at 20 bpm, oxygen at ~30%. There has been chatter about possibly extubating her over the weekend! Most of the nurses have commented on how much she seems to hate the breaking tube, so I hope her little body can muster the strength to breathe more on her own if she is extubated in the next couple of days.
Aubrey also continues to do well as far as her feedings go. She is now getting 14 mL (about a tablespoon) of milk every 3 hours, compared to 8 mL 3 days ago.
Paige's turn.
She hasn't been making as good of progress as her sister, but she has the excuse of being a week out of surgery. Here's a picture of her that I took with my phone (I can't figure out how to put it between text with my phone, so it's at the bottom of the post).
Her sputum and blood cultures have been negative for infection, so her antibiotics were stopped today. Despite having no infection, she hasn't really been weaning from the oscillating ventilator as well as everyone would like. For everyone who understands what these numbers mean, her MAP is 13, amplitude is 29, and oxygen has been around 40% (though these change slightly throughout the day based on xrays and oxygen saturation). I had another brief conversation with one of the doctors about the possibility of Paige needing steroids.....
Now that infection has been ruled out, Paige is receiving milk again. She's been started out at 1 mL every 6 hours. Her sister is definitely getting the lions share of mommy's milk. Paige should catch up eventually.
Well, that's about all that comes to mind for now. If anyone has any questions/curiosities about anything related to the NICU baby experience or about the girls specifically, feel free to post a comment and I'll do my best to reply or discuss it in a future post.   I'll post some better pictures next time I update, too.

Days 26-27 - February 18-19

Paige first today.

So I learned on Sunday that Paige's incision for the PDA ligation surgery is quite a bit bigger than I had thought it was.  Here's a picture of her back.

I watched a PDA surgery video on Youtube (you can see anything on Youtube) and that incision seemed smaller, but it must have been on a much bigger child or something.  Poor girl.  I guess I'll never have to worry about her becoming a swimsuit model.  We spoke with the surgeon on Sunday, and he also said that she is at a very slightly increased risk of developing scoliosis due to this surgery.

Paige was doing great as far as ventilation goes until early this morning (she's still doing relatively well).  Her blood became a little more acidic than it is supposed to be, partly due to ventilation and partly due to other reasons that are unknown.  Her oxygen had to be increased from about 35% to about 45%.  On the plus side, her pressure settings (which help keep her lungs inflated) were reduced a little bit, which is a good thing.  For any nurses reading her MAP is 12, Amp is 31, rate 12 Hz.

Due to her acidity and recent surgery, her doctor is concerned that she may have developed an infection, so she was put on two antibiotics (vancomycin and cefotaxime) until infection can either be confirmed or ruled out.  Blood and sputum samples were drawn to check for infection, so we should know the results of those in 2 days.

Tonight Paige got really squirmy while she was in her incubator, and we weren't really sure what the problem was.  She was opening up her eyes all big and was much more alert than normal.  I was worried that she was in pain or something, but her nurse instinctively went for the diaper.  Apparently Paige was in the middle of taking a huge poop!  She calmed down a lot after she finished her business.  Good stuff.  While I'm on this topic, her feedings have temporarily been stopped until infection is ruled out.

Aubrey's turn.

I thought I could post a little bit better of a picture of mommy holding her on Saturday.  Her's a phone picture.

Aubrey has continued to do well.  Her percent oxygen is in the mid to upper 20 range (the air we breathe is 21%), and her ventilation pressures have been steadily decreasing.  Our hope is that she can be extubated (take out breathing tube) in the next few weeks and given a mask for breathing.  Her breathing tube had to be adjusted a little today, so another x-ray was taken.  Her lungs are looking better than I've ever seen them.  For any nurses reading her PIP is 25, PEEP 6, rate 28.

She's had some yellowish colored sputum recently, so a sample of that was taken on Sunday.  We should know tomorrow if she has an infection.  In her defense, she's had weird lung gunk ever since her lung bleed 25 days ago.

Her feedings have been increased to 8 mL every 3 hours (up from 6 mL).

Time for a weight report.

Aubrey:
     Day 1 -   2 lbs 2 oz
     Day 8 -   2 lbs 7 oz
     Day 17 - 2 lbs 11 oz
     Day 27 - 3 lbs 1 oz


Paige:
     Day 1 -   1 lbs 13 oz
     Day 8 -   1 lbs 12 oz
     Day 17 - 2 lbs 2 oz
     Day 27 - 2 lbs 10 oz

Days 24-25 - February 16-17

The past few days have gone really well for the girls.  I'll start with Paige first.

(Oh, and before I forget.  If anyone wants to get an automatic email when this blog gets updated, put your email address over to the right where it says "Follow By Email" and follow the steps.)

As I reported in the previous post, Paige had PDA ligation surgery on Friday.  She has been doing well since then.  Prior to the surgery, her oxygen levels were very inconsistent and were constantly going too low.  After the surgery, she has been much more stable.  Her ventilator settings (she's still on the oscillator) have been decreased over the past few days, which is an indication of improving lung function.  Here's a picture of the incision site.

The surgeon said that the scar will be there for the rest of her life, but that it shouldn't be that bad because babies heal very well.  Everyone needs a few good battle wounds, I guess.

We have pretty much left Paige alone since she had surgery so that we don't get her all worked up.  If you recall from previous posts (purple monsters), she gets irritated very easily, so the less she gets handled the better.  She seemed to be on just the right amount of pain killers today, so both Andrea and I got to change her diaper.  Here's a picture of Paige looking in mommy's direction just prior to a diaper change.

She doesn't really look at you right now.  I think the best description is that she looks toward you, if that makes sense.  It's similar to how an old, mostly blind, mostly deaf dog will look toward you if it suspects something is going on in your general vicinity.  Here's Paige with a BIG yawn next to mommy.

(Sorry about some of the photos.  It's hard to get good pictures in the NICU because it's always dark, so I have to shoot with extremely high ISOs and with the aperture basically wide open so that the shutter speed will be short enough for handheld shots.  If it were a little brighter in there I could have both Andrea and Paige in focus by narrowing the aperture....).

Here's Paige with mommy and daddy.

Other good news is that Paige's feedings, which were stopped the day before the surgery, were started again today.  She is starting over at 1 mL every 3 hours through a G-tube.

Now it's big sister's turn.

Aubrey has been doing well the past couple of days, too.  Check out what happened to her on Saturday:

I was at work (camera was with me, hence the picture of a picture) and Andrea was about to go home when the nurse asked Andrea if she wanted to hold Aubrey.  All of Aubrey's cords where then untangled and Andrea got to hold her for the first time for about an hour.  (That's crazy if you think about it.  Andrea has been a mom for 25 days and has only been able to hold one of her babies once.)  As you can imagine, that experience made Andrea's day/week/month/year/life.  Aubrey enjoyed it for the first 30 minutes, then got a little too squirmy for her breathing tube to handle, so the nurse had to put her back inside her incubator.

The reason why it has taken so long to be able to hold the girls is because they are still not very stable, and there is a chance the breathing tube will pop out.

Aubrey had another fun field trip today (Sunday).

It was awesome being able to hold her.  She lasted about an hour with me, then got really squirmy and had to be put back in her incubator.  I had three different thoughts during the experience: (1) this is really cool; (2) dang you're small Aubrey; (3) you have that weird baby-funk smell, but it's not so bad since you're my daughter.

It's recommended that we do skin to skin contact when we hold them because it keeps the girls warmer, the sound of feel of our heart beat calms them down, and they seem to enjoy the touch of skin better than fabric.

Someday we'll be able to hold Paige, but probably not for a few weeks.

Aubrey has been doing well overall.  Her ventilator settings have been decreased the past few days.  She is still on the conventional ventilator and has a long way to go before she gets off it, but she is making progress. Here she is just before I held her today.

As far as feedings go, Aubrey has been increased to 6 mL of milk every 3 hours (up from 5 mL every 3 hours).  Before every feeding, the nurse checks to make sure her stomach is emptying the milk into her intestines, which they do by attaching a syringe to the G-tube and seeing what they can suck out of the stomach.  Yesterday, Aubrey's stomach didn't pass anything into her intestines, so the nurse passed the tip of the G-tube through her stomach and into her intestines, where it will stay for a few weeks until they try again with her stomach.

Day 23 midday update - February 15

Just thought I'd put in a quick update about Paige's PDA ligation surgery.  She had a good night and was stable, but the NICU thought it would be best to do the surgery in the NICU rather than in a surgery room, so the surgery room was brought to Paige (sorry, didn't take any pictures).

The surgery went well and Paige appears to be comfy on an IV painkiller called fentanyl.  Read the post on Day 5 for an in-depth discussion of what a PDA is if you have forgotten.  The surgeon said that Paige's PDA was nearly as big as her aorta, which is pretty darn big.  I guess that helps explain why her lungs have been so wet and she has been having such a hard time with her oxygenation.  Her blood gases were better after surgery than I have ever seen them.

Due to the anatomical location of the PDA, one potential complication with PDA surgery is "temporary" vocal cord paralysis (up to a year).  Another is permanent vocal cord damage, causing a person to have a lifelong raspy voice.  A raspy voice is a small price to pay for a correctly functioning circulatory system, but hopefully she doesn't have these problems.  I guess we'll know in a year or so.

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.