Day 10 - February 2, 2013

Day 10 was mostly uneventful, which is good thing if you're a NICU baby, but a few exciting things did happen.

Our first item of business will be poop.  Aubrey pooped for the first time today! Here's the proof, haha.

I was at work when this happened, so I shared this picture with my coworkers.  I'm sure having a picture of a baby turd shoved in their faces made their day much better.  As reported by the nurses, Paige had her first poop a few days ago, but we don't have visual documentation of hers.  Having Aubrey's first pooh as a digital image is quite exciting for me.  If, for instance, some punk rocker comes to pick her up for a date in 17 years, I can see our conversation going in this direction.....

Him: "I'll take good care of your daughter and promise to have her home by 10 PM"

Me: "Speaking of that, has she ever shown you the picture of her first poop?"

Excellent.

Andrea also had me take a picture of the different sizes of diapers used in the NICU.  The "big" diaper is a preemie diaper that you would buy at a baby store.  The two smaller ones are micro-preemie diapers that the NICU gets special order from somewhere.

Both of our girls fit most comfortably in the diaper on the left.  For times when the nurses want to leave them alone for a long time, they'll put them in the middle diaper because it can hold a lot more urine.  I have heard reports that there is a diaper even a size smaller than the one above on the left.  I'm glad the girls don't need that size.

Here's the diaper on the left in Andrea's hand.  She has pretty small hands.

While we're on the topic of size, Andrea acquired a full-sized barbie doll (nurse barbie, naturally), so that all you readers could get a better idea of the size of the twins.  Here's Aubrey vs Barbie.

Here's Paige vs Baribie.

Andrea vs Barbie

All in all, both girls are doing pretty well.  Their lungs still aren't great, but they're making progress.  When Aubrey's lungs get suctioned, there is still a little bit of pink to fluid that gets sucked out. Their X-rays are showing that their lungs are slowly improving, too.  Late in the day, Paige was switched from the oscillator (the high frequency oscillating ventilator that I described on Days 6-8 post) to a normal ventilator. She has been doing well on it, which shows that she is improving.  As long as the girls are making progress, they'll probably be able to avoid the IV steroids which I discussed in yesterday's post.

Well, that's about all I remember from Day 10.

Day 9 - February 1, 2012

I just want to start out and say thank you for all the nice comments.  I'm glad you readers have been enjoying the blog so far, and it gives me encouragement to keep going with it.  As of this morning, this blog has had over 1400 page views.  Wow.  Please feel free to share the blog address with anyone who asks about the girls.

A lot of people have been asking Andrea and I what they can do to help out.  We honestly do not have any direct pressing needs, as my parents and Andrea's mom are in town with us right now.  If that answer doesn't satisfy you, here's two things that you can do for us.

First, please remember us in your prayers.  Second, if you're able to, please donate blood.

Let me explain that second request.  2-pound babies have roughly 100 mL of blood.  For you non-metric-system people out there, one-half of a cup is about 120 mL.  Babies in the NICU have A LOT of blood tests -- these people in the NICU are like vampires.  Even though most tests only require 1 or 2 mL of blood, that adds up really fast when a baby only has 100 mL to start with.  For that reason, both girls have averaged one or two blood transfusions each day.  Without the gift of blood donations from healthy donors, modern NICU treatment would not be possible.

That was too much text.  Let me find a picture......

That's Paige next to what she will be sucking me dry of when she's a teenager.

Not much happened with Aubrey today.  I think she had a blood and platelet transfusion, but that's normal for her.  She now weighs 1100 grams (there are 454 grams in each pound), or about 2 pounds 7 ounces.  That's up from 2 pounds 3 ounces at birth, but the weight gain is probably all water from swelling.  That's about all Aubrey did on Day 9, so here's a picture of her with mommy's hands around her (taken with a phone on low quality settings while i was not there, so not that great quality. not sure why no one thought to grab the real camera).

Paige's day was a little more eventful.  She had an echocardiogram in the morning (heart ultrasound), and it appeared that she still has the PDA, though the official report still has not come back from the cardiologist as of this posting.  Dr Mir came into the room and spoke with me about it.  She said that even though the PDA is still present, a biomarker called BNP, a chemical made by the heart and found in the blood, had decreased from about 600 to 70.  Dr Mir said that the decrease in BNP may indicate that the indomethacin is starting to work and the PDA is getting better.  That's very good news.  Additionally, Paige's oxygen levels have been much more steady over the past few days, which is also an indication that the indomethacin may be working to decrease the size of the PDA.  The current plan for Paige's PDA is to watch and wait.

One thing I forgot to mention from a day or two ago was that we spoke with the girls' doctors about overall lung function.  Their lungs are still pretty bad, but seem to be slowly improving.  We discussed the girls possibly needing IV steroids to help their lungs mature.  Steroids do a very good job of helping lungs mature.  The problem with giving steroids to babies is that brain development can be affected.  There have been some studies showing that babies given steroids have a cerebellum that is about 10% smaller than those not receiving steroids.  The cerebellum is responsible for coordinating complex muscle movements, like dancing, throwing a ball, speaking, and just about anything else that requires some sort of movement in a coordinated fashion.  From our discussion with the doctors, it seems like IV steroids would be considered if the girls are not able to wean off the ventilators.

Andrea arrived at the NICU right as I was heading off to work, and she told me that she had a very nice visit with the girls, especially Aubrey.  The nurse raised the top of the incubator, and Andrea spoke to Aubrey while cupping her head with her hands for about 10 minutes.  When Andrea first touched her and started speaking, Aubrey tried to open her eyes as if she recognized the voice.  It was a good bonding moment for mom and baby. The picture above was taken during that 10 minute period.

I'll end the post with a short video I took of Paige.  She appears to be sucking on her ventilation tube.

Days 6-8 - January 29-31, 2013

Sorry to combine days, but I don't remember what happened when.  Let's talk about ventilation for a little bit.  Both Aubrey and Paige were intubated with size 2.5 breathing tubes.  There was substantial leak around each tube because they were a little bit too small for the girls.  Aubrey was having a hard time maintaining oxygen levels, so the decision was made to re-intubate with with a size 3.0 breathing tube.  Dr Sebald did this during morning rounds, so when the buzzers and alarms started going off during the re-intubation (buzzers and alarms are always going off, no matter what is happening), there were like 4 other doctors, 10 nurses, and like 5 respiratory therapists that wandered over to see what all the sound was about.  According to Dr Sebald, it was a simple procedure; the crowd made it appear like Aubrey was on the precipice of the death.  I think Dr Mir saw the concern in me generated from the large crowd, so she started to quietly shepherd out everyone that wasn't needed.  I appreciated that.

The bigger breathing tube in Aubrey fixed the problem with the leak, but her oxygen levels still weren't behaving.  The doctors made the decision to take Aubrey off of the conventional ventilator and place her on a high frequency oscillating ventilator (called an oscillator or HFOV for short).  Sorry about the wikipedia link, but it describes it the best based on my short google search.  If you don't feel like reading that link, I'll briefly describe.  Oscillators differ from normal ventilators in that instead of producing the normal air in, air out at a normal breathing rate (around 40-70 in babies), they cause very fast, very small breaths, up to 900 per minute.  This causes air in the lungs to be agitated around.  Oscillators do not cause lung injury like regular ventilators, so they are considered to be lung protective.  However, they do not allow the girls to breathe normally.

Once Aubrey was placed on the oscillator, her oxygen and other blood gas levels got a lot better.

A couple days later, the leak around Paige's breathing tube became pretty bad, so they gave her a size 3.0 tube.  She was also eventually place on an oscillator, and her blood gas levels have improved since then.  Because the oscillators are doing 900 breaths per minute for both girls, their bodies shake like they're on a vibrating bed.  Both of their lungs have been looking better in X-rays since they were placed on the oscillators.

It's picture time after all that reading. Here's a picture of Paige right after her eye mask was removed one morning.

It's very rare for them to open their eyes right now.  Here's a picture of Aubrey with the Roberts grandparents.

Here's a picture of Aubrey with grandma Moore.

Here's Paige with the grandparents.

Close up of Paige:

Close up of Aubrey:

Aubrey's bum:

Paige with her sweet sunglasses:

Day 5 - January 28, 2013

I think I've forgotten to mention a few things from previous days, so I'll do a quick review. Since the doctors were unable to establish umbilical lines in Aubrey, she was given a PICC line on Day 3 or 4.  PICC stands for Peripherally Inserted Central Catheter, which is fancy talk for an IV line that, in babies, is inserted in either the leg or arm and pushed up the vein until the end is right at the opening of the heart.  The nice thing about PICC lines is that they last a very long time compared to regular IV lines.  Also, really concentrated fluids, like IV nutrition (called TPNs), can be given through PICC lines.  The disadvantage of PICC lines is that they can cause infections.  Also, blood products can't be given through baby PICC lines, so if blood is required, a separate regular IV line has to be established.  All that information is probably way more than you want to know. Sorry.

Speaking of IV nutrition (TPNs), both girls are getting these, as well as some fat to give them energy and nourishment.  They won't be able to get any milk orally until they are more stable, which is believed to be in a few weeks.  Andrea has been pumping 8 times a day starting the day after the girls were born, and we put the milk, or whatever it is, in a freezer.  My opinion is that pumping is a very strange thing.  Hopefully this doesn't make Andrea cry, but I chuckle whenever I see her hooked up to that machine (which we get as a free rental from Kaiser).

Both girls are also getting about 2 to 6 chest X-rays each day.  These are done for a variety of reasons.  X-rays show how well inflated their lungs are, which then helps to make adjustments to the ventilators.  Also, X-rays show if the ventilation tubes and PICC lines are in the right place.  I'm not really sure what the long term effects from all these will be, but I don't think all that radiation does much good for anyone....

After all that text, you readers deserve some pictures.  This first one is Paige on her belly in a little nest thingy. If you notice the shades over her eyes, that means that she was also getting phototherapy due to increased bilirubin levels.

This next picture is Aubrey on her belly.  Note that the bruising on her face is still pretty bad.

Both girls really seem to like being on their bellies in the fetal position.  Usually their oxygen requirents go down when they're on their bellies. Both girls are kind of treated like rotisserie chickens.  They're constantly being turned, and their neck positions are also frequently adjusted.  Coming into their rooms the first time each day is always fun to see how they're positioned.

Since you readers are doing such a good job reading me, here's a bonus picture of when Andrea got to have our dog come visit her while she was in the hospital before the girls were born.

It had been almost a month since they had seen each other.

In the NICU, routine head ultrasounds are done every Monday and Thursday.  Being a Monday, both girls got an ultrasound.  Recall for Aubrey from Day 4 that an ultrasound had shown 8 mm of subdural fluid and a grade 1 bleed.  Today's ultrasound showed that the fluid had reduced in size to 5 mm, and the bleed was no worse.  That's good news!  That means that she might not have to get head surgery.  Paige's ultrasound showed no problems.

The girls' doctors could also hear heart murmurs in each one. My understanding is that most preemies have some type of heart murmur, so this wasn't a surprise to anyone. Both girls had an echocardiogram today, also, which is fancy talk for a heart ultrasound.  The results showed that both girls have a patent ductus arteriosis (PDA), and Paige also has a patent foramen ovale (PFO).

If you don't feel like clicking on those links, I'll briefly describe what that means.  Prior to birth, babies don't need to use their lungs, so the body creates a shortcut for blood to bypass the lungs.  When a baby is full term and takes his or her first breath at birth, these shortcuts usually snap shut and slowly disappear.  Since Aubrey and Paige are preemies, these shortcuts didn't snap shut.  Most of the time, a PFO isn't a problem, so Paige's doctors aren't concerned about that.   PDA is a different story, though.

If you looked at the hyperlink above for PDAs, what can happen is that the lungs will get too much blood pumped to them, and the babies will get symptoms of congestive heart failure and pulmonary hypertension.  Left untreated, that's bad news.  Sometimes PDAs go away on their own, but the twins' PDAs are both fairly good size, so that would be unlikely. The first treatment option is a drug called indomethacin.  This drug constricts the PDA shortcut to help it close.  If that doesn't work, then surgery has to happen.  As far as surgeries go, PDA correction is a fairly simple procedure.  If you looked at the picture in the link, you'll notice that it is not heart surgery.  The surgeon makes a small incision between the baby's ribs and puts a clamp on the PDA. That's pretty much all there is to it.

Imdomethacin, the drug used to treat PDAs, places babies at an increased risk for bleeding and for GI tract perforations (holes).  Due to Aubrey's lung bleed, she is currently not a candidate for indomethacin.  Paige has had no bleeding, so she was started on indomethacin today.  She'll get a dose once a day for three days, and then another heart ultrasound will be done to see if it worked.

Whew, that was a lot of information. You all deserve another picture.  Let me see what I have...... OK here's Aubrey in her open incubator with mom and dad on her birthday.

Day 4 - January 27, 2013

Luckily for you readers out there, Day 4 was a little more eventful.  But first, here's a picture of Paige's mommy touching her feet.

After you got over the "ooooohhh, how cute and tiny" reaction (which does take a while), you may have noticed how banged up her skin is.  Preemie skin is very sensitive, and all the cords and monitors tend to be harsh on it.  The overall sensitive nature of preemies makes it so that they don't like any type of touch.  If Paige gets handled too much by her nurse, she can get so agitated that she'll stop breathing.  On the day of writing this, neither Andrea nor I have held either girl because it would be very irritating to them.

Sorry for the digression.  On Day 4, both girls had head ultrasounds in order to detect any type of brain bleed. Just to remind everyone, Aubrey had a lung bleed on Day 2, which puts her at an increased risk of having a brain bleed. For Paige, the ultrasound showed no signs of bleeding.  For Aubrey, the ultrasound showed a large amount of fluid measuring 8 mm in her subdural space, which is the space between the brain and the skull. She also had a grade 1 bleed in her brain. No one was worried about the grade 1 bleed, but the subdural fluid was more concerning.

A neurosurgeon came to the NICU and spoke with Andrea and I about the subdural fluid.  He said that until a CT scan was done, he would not be able to tell if the fluid was blood or water.  However, he believed that the fluid was not something that had happened in the past week, which he said was good.  The neurosurgeon explained that one of three things would happen with the fluid. (1) It would go away on its own, which he sees happen in about half of cases like this; (2) It would not go away, but would be fairly simple and require only a few drain tubes in Aubrey's head; (3) It would not go away, and would require partial removal of the skull to drain.  Naturally, everyone hoped for outcome #1.  The neurosurgeon told us that the more invasive procedures typically correlate with increasing amounts of brain damage.

My aunt and uncle that live a couple hours away drove down to see us in the afternoon.  Our Bishop, who is our local church leader and is comparable to a Pastor or Priest, came to see Andrea and I also.  My Bishop, uncle, and I gave both girls a name and a blessing.  For those not familiar with this, it's basically our faith's way of spiritually and publicly welcoming a baby into the world.  It is usually done at church in front of the entire congregation, but given the circumstances, our Bishop felt it would be appropriate to do it in the NICU with just the six of us present.  It was one of the sweetest experiences that Andrea and I have ever had.

Day 3 - January 26, 2013

I can't really remember much of what happened on Day 3.  I was really tired, and pretty much didn't leave the NICU.  Because Aubrey's bleed had happened 15 minutes after I had left the room the night before, I had a superstitious feeling that if I left the NICU, something bad would happen to one of the girls.  It just turned out to be a day where nothing good or bad happened (in other words, my superstition paid off, haha).

Andrea's mom flew into town that night, which Andrea really appreciated.

For some comic relief, while Andrea was pregnant she puked up blood one night.  An advice nurse told her to go to the emergency room to get checked up.  This is the reading material that the emergency department provided in the waiting room.

This made us feel better.

Day 2 - January 25, 2013

It's been 6 days since Day 2, so I'll try to remember what happened as best I can.  The previous night, I spent my first night at the hospital.  That was pretty uncomfortable, but you can sleep anywhere if you're tired enough.  I spent the whole day going back and forth from the NICU, where Aubrey and Paige were, to Andrea's room to make sure she was doing alright.

Overall, Aubrey was doing better than Paige. Aubrey's lungs were better developed, and she was quite a bit bigger. Towards late afternoon a couple of the doctors were talking about extubating her (taking out the ventilation tube) and giving her a nasal cannula to see how she would do breathing mostly on her own. If you're wondering what a baby does all day inside one of the NICU isolets (I call them incubators or baby ovens), here's a video of Aubrey.

Pretty exciting, huh?

Paige was generally stable, but was not doing quite as well as Aubrey.  Here's a picture of her from Day 2.

Things were going pretty well, so at about 10:30 PM I left the hospital to go home, get a few things, and take a shower, after which I would go back down to the hospital.  Just before midnight, I got a call from Andrea. She said that one of the NICU doctors had come into her room and woken her up and told her that Aubrey had had a lung bleed.  Being in a somewhat drugged up state from the pain medications, Andrea didn't really understand what the doctor had told her.  I got in the car and quickly returned to the hospital.

When I got back to the NICU, the doctor explained that Aubrey had had a pretty significant lung bleed at 10:45 PM, but that they were able to get the bleeding under control in about 15 minutes. They had called a code blue on her, and the way the doctor described everything made it sound like he thought Aubrey was lucky to still be alive.

Like any other bleed, the way to treat a lung bleed is with pressure.  The only way to put pressure on the lungs is to increase the ventilator pressure, so her ventilator settings were turned way up. The problem with turning up ventilator pressures is that it causes damage to the lungs, so it's kind of a Catch-22.  The doctor also told us that babies who have lung bleeds are also more prone to have bleeding in the brain.  Not good.

I went back to Andrea's room and explained what had happened to Aubrey.  We both went to the NICU, and I gave Aubrey a Priesthood Blessing.  Thus ended what I assume will be many of very challenging NICU days.