Days 63-66 - March 27-30

Happy Easter! We had a little Easter photo shoot with the girls.

Aubrey was asleep during most of the picture taking, and Paige was crying during most of the picture taking. In all the pictures, Aubrey is on the left and Paige is on the right.

Here's a family photo. Apparently I wasn't wearing very Eastery colors.  Oops.

These next two pictures capture the true difference between Paige and Aubrey, haha.

Here's a picture showing their dirty little faces (they each got a bath that night)

Here's mommy holding her two little ones.

And here's one more (this time Paige is on the left).

Both girls are now in open "cribs". I use the term loosely because their crib is a clear plastic bucket with a hard mattress on the bottom.  Here's Aubrey in hers.

The buckets are inclined to help with their reflux (heartburn).  It's very quiet in our room now that the incubators are out.

The only thing that is really new from last post (besides the Easter pictures, of course) is that both girls had another eye exam.   Both girls are showing signs of stage 1 retinopathy of prematurity (ROP), so Andrea and I are bummed about that.  Stage 1 is the most mild form of the condition, and we're told that 90% of infants with stage 1 ROP typically grow out of it on their own with no need for treatment.  The doctors told us that they are actually surprised that the girls didn't have ROP earlier given how premature they were.  They'll have another eye exam in two weeks, so that will give us a better idea of what is going on.

Aubrey's feedings are up to 40 mL every 3 hours (38 last post) and her oxygen requirements fluctuate between 20 - 40 mL per minute (about the same as last post).  We still try bottle feeding her about twice daily.  Sometimes she does a decent job and drinks 15 mL, sometimes she isn't interested at all and doesn't take any.

Paige's feedings are up to 35 mL every 3 hours (34 last post) and her oxygen hovers between 100 - 160 mL per minute (about the same).  She still isn't getting the whole bottle feeding thing.

At this point, the question is "When can they go home?"  In general, there are 3 requirements:
1) Be able to maintain body temperature in open crib (they do this fine)
2) Be able to eat enough to grow (can't do this yet)
3) Be medically stable, which for them means no decreases in oxygen levels and heart rates (they're both having problems with this still)

We assume that both girls will be in the NICU for at least 2 or 3 more weeks.

Days 57-62 - March 21-26

Sorry for the long delay in posting.  Not many exciting things have happened (that's good) since last post, and you all probably don't want to read three posts of "they ate every 3 hours, pooped, and cried a little bit....."

One exciting thing is that both girls are now over 4 lbs! Saturday (March 23) was pretty cool because both girls were exactly (within half an ounce) twice their birth weight.  The pace of their weight gain has really been picking up. I'll post the weights and heights at the bottom of this post.

Both girls had another eye exam about 6 days ago, and while their retinas are still immature, which is expected, there are no signs of retinopathy of prematurity.  Andrea and I feel like our girls really dodged a bullet in the eye category.  Now we have to hope that they get their mommy's good vision and not their daddy's eyeglass-assisted vision.  I'm sure all parents do this, but we constantly talk about how our girls need to have all of our good traits and none of our bad ones.  So the girls need mommy's eyes, daddy's lungs, mommy's full head of hair (I swear I'm not going bald, I've always had my receding hairline, haha), daddy's immune system, etc.

Let's talk about Paige.

She's generally been doing well, but is definitely our feisty one.  She gets mad whenever anyone is doing any kind of care with her.  She was making very quick progress for about two weeks, but this past week it seems like she has hit a plateau.  Her oxygen requirements have increased a little bit to around 160 mL per minute (up from 100 last post), but at least she is still on low flow.  Her feedings have been increased to 34 mL every 3 hours (up from 29).

Paige really likes sucking on her pacifier, but she gets so into it that she'll forget to breathe sometimes.  That will cause all kinds of alarms in our room to go off, at which point we remove the pacifier from her mouth and she resumes breathing.  We've tried bottle feeding her a few times, but she usually ends up choking on the milk.  Her best so far has been taking 5 mL from a bottle.  Seems like the suck-swallow-breathe process is still a little confusing to her.  She'll eventually pick it up.  The girls weren't even due until April 22, so she is attempting stuff that babies aren't supposed to be doing at her age.

Overall, Paige has been more calm than in the past, which leads us to believe that she is more comfortable now.  Here's a picture of her doing a sleep smile.

Here she is being held by mommy.

Aubrey's turn.

Right after I made the previous blog post, Aubrey's nurse discovered some blood in her stomach (before each feeding, they suck out the stomach contents through the girls' g-tube to make sure the milk ins't just sitting there without going into their intestines).  The last time this happened to her, her feedings were stopped for a few days and she got a bunch of IV lines put in.  Luckily she didn't have too much blood, so her doctor just decided to skip one of her feedings and then resume as normal after that.  She hasn't had any signs of bleeding since then, so no one has a clue what happened.  At this point, given her history of 4 bleeds, everyone has concluded that she has von Willebrand Disease like her daddy.  If you followed that link and read about it, she has Type 1 if she has it.  What does that mean for her?  She'll get frequent bloody noses until she is an adult, her periods will be heavy, she'll bruise very easily (which may be confused with child abuse, which happened with one of my sisters), and cuts will bleed about 3 times longer than normal.

Like her sister, Aubrey has had a slight increase in her oxygen requirements.  She's at 40 mL per minute (up from 30 last post).  Her feedings are up to 38 mL every 3 hours (up from 33 last time).  She gets bottle fed about twice each day, and the past couple of feedings she has been eating 15 mL.  Compared to her sister, she is much more advanced with bottle feeding.

Aubrey is no longer in an enclosed incubator.  The top has been raised, and she has been regulating her temperature really well, which means she is ready for an open crib.

Aubrey also got her first series of immunizations today.  She didn't enjoy that very much, too say the least.  Paige will be getting hers in the next few days, and I'm sure she'll get even more mad than Aubrey.

Weight and height time!

Aubrey:
     Day 1 -   2 lbs 2 oz     14 inches
     Day 8 -   2 lbs 7 oz
     Day 17 - 2 lbs 11 oz
     Day 27 - 3 lbs 1 oz
     Day 36 - 3 lbs 4 oz

     Day 46 - 3 lbs 7 oz     16 inches

     Day 56 - 4 lbs 0 oz

     Day 62 - 4 lbs 9 oz     16 1/2 inches

Paige:
     Day 1 -   1 lbs 13 oz   14 1/2 inches
     Day 8 -   1 lbs 12 oz
     Day 17 - 2 lbs 2 oz
     Day 27 - 2 lbs 10 oz

     Day 36 - 2 lbs 13 oz

     Day 46 - 3 lbs 5 oz     16 1/2 inches

     Day 56 - 3 lbs 10 oz

     Day 62 - 4 lbs 1 oz     17 1/2 inches

If the girls were singleton births (not twins) and still inside mommy, my phone app says they would be 18 1/2 inches long and 5 lbs 12 oz.

Days 54-56 - March 18-20

Today we moved rooms for the first time!  Moving rooms in the NICU is kind of like graduating from elementary school.  It's more important symbolically than in actuality, but it does show that the girls have been making progress.  They were moved from the medically fragile side of the NICU to the medically stable side (called the "feeders and growers" portion).  Now both girls have their own window.  Here's a picture of Aubrey being moved in her incubator (picture is kind of blurry, sorry about that).

Here is Paige being moved in her incubator.

Here's Aubrey looking out (or at?) the window of her new room.

You'll notice Aubrey has the nasal cannula back in her nose.  She got a little tuckered out after breathing on her own for about 2 days, and is now on low-flow oxygen at 30 mL per minute.  To put that into perspective, when she was getting high flow it was at 2000 mL per minute at room air.  It's not really that much of a setback.

For feedings, Aubrey is now at 33 mL every 3 hours (up from 28 mL last post).  She is being bottle fed about twice per day, and takes anywhere from a low of 5 mL to a high of 12 mL.  As I stated last post, she'll need to be bottling all of her milk at each feed in order to go home.  Due to all this milk she's been eating, she hit 4 lbs today!

Paige's turn.

She has been changed over from high-flow to low-flow nasal cannula and is usually on about 100 mL per minute.  Her lung function has seemed to improve quite a bit over the past week.

Paige is receiving 29 mL of milk every 3 hours.  One of the occupational therapists attempted to bottle feed her today, but she wasn't able to coordinate the breathe-suck-swallow rhythm very well.  We'll have to try again in a few days.

A few days ago Paige got to experience being held by one of her aunts (i guess she's technically a great aunt since she's my aunt).  Here is Paige with aunt and uncle.

My aunt and uncle have had two grandkids in NICU's (one was a 28-ish weeker about 30 years ago and the other a 24-ish weeker about 10 years ago), so it's been really nice to have them visit us every few weeks.

While I was at work one day, all three girls got to have some snuggle time together.

It's cute how both girls are looking up at mommy in the second picture.  Aubrey is on the left, Paige on the right.  This picture shows how much bigger Aubrey's head is than Paige's.

Weight time

Aubrey:
     Day 1 -   2 lbs 2 oz     14 inches
     Day 8 -   2 lbs 7 oz
     Day 17 - 2 lbs 11 oz
     Day 27 - 3 lbs 1 oz
     Day 36 - 3 lbs 4 oz

     Day 46 - 3 lbs 7 oz     16 inches

     Day 56 - 4 lbs 0 oz

Paige:
     Day 1 -   1 lbs 13 oz   14 1/2 inches
     Day 8 -   1 lbs 12 oz
     Day 17 - 2 lbs 2 oz
     Day 27 - 2 lbs 10 oz

     Day 36 - 2 lbs 13 oz

     Day 46 - 3 lbs 5 oz     16 1/2 inches

     Day 56 - 3 lbs 10 oz

Days 50-53 - March 14-17

Today was bath day for both girls.  Aubrey seemed to enjoy her bath (she didn't protest, at least).  Here is a picture of her getting cleaned up by mommy.

Here's the sweet hairdo that daddy gave her before it was completely dry.

Here's the dry version.

You observant readers will notice that Aubrey's nasal cannula is no longer in her nose.  She's been breathing all on her own with no additional oxygen for over 24 hours now!  All she has on her face now is her feeding tube.

Her feedings are now fully fortified (20% extra calories) and up to 28 mL every 3 hours.  Here's another cool thing we've been doing with her.

We've been trying to get her used to the whole eating thing over the past few days.  She will usually drink about 5 mL (one teaspoon), and then get tired and fall asleep.  In order to leave the NICU, both girls will have to be able drink their entire feeding from a bottle.

Paige's turn.

Paige didn't seem to like her bath quite as much as her sister, but she was really relaxed afterwards.  Here's a picture of mommy giving her a bath.

When I picked her up to put her in the bath water, she peed all over me.  Never having been peed on before, it caught me off guard, and she's lucky I didn't drop her, haha.  Anyways, here she is after the bath with a cool hairdo and a very strange facial expression.

After her bath, Paige snuggled up with me for over 2 hours.  She still doesn't doesn't like being touched, but she really enjoys being wrapped up or held tight.  Andrea and I have joked that we'll need to get her one of those dog anxiety wraps before we go home.

Paige's nasal cannula is at 3 liters/minute and around 30% oxygen.  These numbers would be lower, but due to some bloody nose and skin irritation issues she's been having, the cannula is not all the way into her nose, as the picture above shows.

Her feedings are up to 26 mL fully fortified every 3 hours.  We have not tried bottle feeding her yet, but hope to possibly start that in the next week.

Andrea and I are really surprised and happy with how much progress both girls have made over the past week.  During the first month and a half we were in the NICU it seemed like the girls' hospital stay was never going to end.  Now we're starting to catch glimpses of the light at the end of the tunnel.

Days 47-49 - March 11-13

We've had some good days with the girls.  Let's start with the most exciting thing first -- family pictures! Aubrey is on the left, Paige is on the right in the pictures with mommy and daddy.

Both girls are IV free (Paige's PICC line was taken out), so we were able to get them close together today.  The  room was a lot darker than the pictures suggest (both girls had eye exams = dilated pupils = room must be dark), so we had a hard time getting good pictures.  Oh well.  Here are some mommy and babies pictures.

Here is daddy and babies.

Here are (finally) some sister-sister photos.  Paige is on the left, Aubrey on the right in all the pictures I'm posting below.

Paige had been wide awake just about 15 minutes before these pictures were taken, but she was getting tired and a little irritated by the time we got Aubrey out of her incubator.

In this next picture, we caught Paige trying to eat her sister's hand.

I guess I should also discuss what's been happening with the girls, even though pictures are more fun.

Paige first today.

Paige's PICC line was taken out, as I already mentioned, so she is IV free now just like her sister.  She continues to slowly wean off her high flow cannula.  As of this posting, she is at 4 liters/minute on room air (21% oxygen).  We like the progress.  Her feedings are up to 24 mL fully fortified (meaning she gets an additional 20% calories) every 3 hours.

You might have noticed in the pictures that her hands are tucked into her sleeves.  She scratched herself in the face pretty good a couple days ago, which has earned her "restricted hands".

One of her eyes has been gubbery lately, so it's suspected she might have a minor eye infection.  The bacterial culture is still pending, and we should know the results tomorrow.

Yesterday, Andrea and I were getting ready to leave when we noticed that Paige was wide awake.  We lifted the top off her incubator and Andrea and I talked to her for like half an hour (Andrea did most of the talking, of course).  She just lay there calmly focused and listened to us.

Aubrey's turn.

The leg that had the PICC line in it started swelling up a couple days ago, so the line was taken out of her leg.  Instead of putting a PICC line back in, which was being used for additional nutrition, her doctor decided to just increase her to full milk feedings.  She's been doing well on that, and is getting 26 mL every 3 hours, fortified to 5% extra calories.

Just as an aside, a lot of times in the NICU rapid progression happens when accidents happen.  For instance, Aubrey would not be on full feedings now if her leg hadn't swollen up.  Another example is that when babies pull out their breathing tubes, the doctors will often wait to see what happens to the baby instead of putting one back in right away.  Accidents let the doctors be more aggressive with their treatments than they otherwise would be.

Aubrey's nasal cannula is still set at 1 liter/minute at room air, so nothing has really changed there from last post.

One of Aubrey's eyes was pretty gubbery.  When they tested for infection it showed she had Staph aureus.  She is getting some eye drops (Polytrim) for 5 days to treat it.

As I already mentioned, both girls had another eye exam today.  Like last exam, neither one has any signs of retinopathy of prematurity yet.  Their retinas are still immature, but are improved from last exam, so the opthamologist is happy about that.  In case anyone is wondering about their hearing, my understanding is that it won't be tested until May or June.

The other day on our way into the NICU, Andrea was talking with Dr Sebald, one of the awesome perinatologists here at Kaiser.  They were talking a little bit about Andrea's 4-week stay in the hospital just prior to the girls being born, and he told Andrea in no uncertain terms that had she delivered the girls even one week earlier they probably would not have survived, and that she had literally saved their lives by sticking with the IV magnesium for those 4 long weeks.

Andrea and I are both grateful for the blessing that modern medicine has been to our lives.

Days 42-46 - March 6-10

Sorry for the long delay in posting.  The past few days have been pretty eventful for both girls.  Let's start with Aubrey first.

Aubrey has taken a few steps backward, and one forward since I last posted.  On Wednesday morning while Andrea and I were getting ready to go down to the hospital, we got a phone call from Kaiser.  Every time we see a 619-528-XXXX number on caller ID, we have a mini panic attack because we know it's the NICU calling us.  They only call us when bad things happen, so we prefer that they don't ever call us.  We thought for sure that something had happened with Paige since she had just been extubated the day before, but the doctor said that they had noticed blood coming out of Aubrey's stomach vent and feeding tubes.  They thought it was due to one of two things.  The first possibility was gastritis, which is basically an irritation of the stomach lining, kind of like an ulcer.  Gastritis isn't really that big of a deal.  The second possibility was necrotizing enterocolitis, which is basically a hole in the intestines.  Necrotizing enterocolitis is very serious and requires emergency surgery.

After doing some X-rays, and based on the fact that Aubrey wasn't showing any signs of distress, her doctor and the pediatric surgeon determined that she had gastritis.  It seemed like Aubrey lost a pretty good amount of blood, so she was given two blood transfusions and two plasma transfusions.  She also got an IV line inserted in both arms, and a PICC line in her left leg.  Her feedings were stopped, and a suction tube was put into her stomach to suck out blood from the gastritis.  Here's a close-up of her face.

The tube in her mouth is the suction tube.  You'll notice it is tinted red due to her stomach bleed.  Poor girl was free of IV lines, and then had 3 all of a sudden.

Gastritis is treated by giving medications that reduce stomach acid production.  Aubrey was given Zantac at first, and has since been switched over to Prilosec.  On Thursday, her bleeding had stopped and the stomach tube was taken out.  The cause of her bleed is unknown.

On Saturday her milk feedings were started again, and as of this posting she is getting 10 mL every 3 hours (down from 24 mL fortified from last post).  Also, both arm IVs have been taken out, but she still has the PICC line in so that she can get IV nutrition until she is at full feedings again.

Aubrey has been breathing really well.  This morning the medical team did a trial to see how she would do without the nasal cannula (in other words, normal breathing like you and I).  She lasted a little over 2 hours, but then her oxygen levels started to decline, so the cannula was put back on.  As of right now, her settings are 1 liter/minute on room air (meaning she is not getting any extra oxygen), which is pretty minimal support.

Paige's turn.

She's been doing well.  Here she is in her first outfit.

That's a preemie shirt(?) and it's huge on her.

I think I forgot to mention in the last post that when she was extubated, she got a steroid called hydrocortisone for 3 days just like her sister did.  Her nasal cannula high flow settings have come down just a little bit from the last post.  Right now she is on 5 liters/minute and 32% oxygen.  I guess progress is progress, though.

Paige is now on full feedings!  She gets 21 mL every 3 hours.  It is half-fortified, meaning it has an extra 10% calories.  Her IV nutrition through her PICC line is still running at a rate just low enough to prevent the PICC line from clotting in case they need it for something in an emergency situation.

On Friday Paige had her second eye exam.  She still has no signs of retinopathy of prematurity (ROP).  We deferred Aubrey's exam because she was having a bad day (I think her PICC line was put in that morning, so she was extremely ticked off).  I watched Paige's eye exam, and that was some pretty gnarly stuff.  The opthamologist uses eye retractors and, well, it basically doesn't look very fun to be examined.  The nurse holding Paige's head still couldn't even watch the examination because it grosses her out.

Andrea and I have both been holding each girl almost every day now.  One day we even did dueling babies -- Andrea was holding Aubrey at the same time that I was holding Paige.  Still not close enough to get a sister-sister photo yet, though.  I scoured through our photos, and apparently Andrea hasn't taken one of me holding Paige yet.

Both girls have been crying a lot lately.  It's kind of cute in a way.

Weight and Height time:

Aubrey:
     Day 1 -   2 lbs 2 oz     14 inches
     Day 8 -   2 lbs 7 oz
     Day 17 - 2 lbs 11 oz
     Day 27 - 3 lbs 1 oz
     Day 36 - 3 lbs 4 oz

     Day 46 - 3 lbs 7 oz     16 inches

Paige:
     Day 1 -   1 lbs 13 oz   14 1/2 inches
     Day 8 -   1 lbs 12 oz
     Day 17 - 2 lbs 2 oz
     Day 27 - 2 lbs 10 oz

     Day 36 - 2 lbs 13 oz

     Day 46 - 3 lbs 5 oz     16 1/2 inches

Days 40-41 - March 4-5

Today was pretty cool. Paige was extubated! Her breathing tube was taken out at 11 AM.  Here she is kind of in shock and not too sure what to with herself now that she has to breathe (mostly) on her own.

She's been doing well the past 4 hours since extubation.  She is now on high flow nasal cannula (like Aubrey) at 6 liters/minute on about 42% oxygen, and her blood gases looked good.  Hopefully she doesn't tucker out from having to breathe on her own, but so far so good.  Here's mommy trying to calm her down just after she was extubated.

Here's mommy next to her newly-extubated baby girl.

This past week has certainly been eventful for Paige.  She was held for the first time by mommy, then she was extubated.

As I write this post, Paige is being held by mommy again.  Let me go get some pictures.......OK, here's a few.

Her hair is pretty dirty from the tape.

Paige's feedings are still at 11 mL every 3 hours, which is about halfway to full feedings.  I sense we are getting very close to the sister-sister photo now....

Aubrey's turn.

She's been doing well the past few days.  She's sleeping a lot, and is pretty active when she isn't asleep. Here are a few pictures of her wrapped up burrito-style.

Aubrey's high flow has been decreased to 4 liters/minute and she is on 25% oxygen.  She really dislikes her OG tube, which is the stomach vent that enters her mouth and goes down to her stomach.  She constantly tries to gag it out, and yesterday she managed to pull it out with her hands.  Unfortunately for her it was put back in about an hour later.

Her feedings have been increased to 24 mL every 3 hours, which are fortified (meaning she gets an extra 20% calories), and she is getting a little extra fat with each feeding as well.

Both girls had head ultrasounds yesterday.  Paige still has no problems, and Aubrey's bleed and subdural fluid have gotten no worse, which is good.  I spoke to the neurologist a couple days ago, and he said that everything seemed fine with Aubrey.  He said that due to the fact that she is doing well and nothing seems to be wrong with her, he can't justify doing a CT scan and exposing her to all that radiation.

Well, that's about it. Hope you all enjoyed the pictures.