Days 89-92 - April 22-25

The girls are now past their due date!  Andrea and I thought they would be home by now, but I guess they're just having too much fun to leave the NICU.

Both girls had another eye exam yesterday.  Aubrey's eyes appeared to be stable, with maybe a slight improvement.  Paige's exam didn't go quite as well.  The opthamologist said that Paige's eyes had gotten a little bit worse and possibly had some vessel dilation, so she requested a second check from another opthamologist.  The second opthamologist examined Paige's eyes today.  He said that her eyes had definitely gotten a bit worse, but that Paige was still not at the point of needing any surgical intervention.  Both girls will have another exam next week.

Let's talk about Aubrey first.

Aubrey has been doing very well.  Her bradycardias (slow heart rate) are occurring much less frequently now, and she just appears to be back to old self and much more comfortable overall.  All her cultures were negative, including the viral culture, so she is no longer on the IV antibiotics.  She has started eating again, so she no longer has the IV in her arm.  Her she is before the IV was taken out.

As you can see from the picture, the nasal cannula was also taken out and she is back to breathing normally like you and me.  We're not really sure why she had all her problems a few days ago, but things seem better now.

Last night Aubrey drank her entire bottle for me (43 mL = about 3 tablespoons)!  That's the first time either of the girls has drunk their entire bottle for me or Andrea.  Aubrey is kind of a messy eater, though.  When she eats, a lot of milk will run down her chin onto the burp cloth.  I was curious to know how messy she actually is, so I asked Aubrey's nurse to weigh the burp cloth before and after eating, and it turned out that she lost 8 mL of 43 mL down her chin.  Hopefully that will improve.

Paige's turn.

Besides the eye exam, not too much has happened with Paige the past few days.  Her high flow is still the same (2 liters/minute with 30% oxygen).  Her feedings have increased to 38 mL (up from 36), and she is slowly getting better with her bottle feedings.  I think the most she has taken from her bottle is 30 mL, but she usually does around 20 to 25 mL when we bottle feed her.

With both girls, we only attempt bottle feeding if they are awake and alert.  They are usually awake and alert at each feeding because they get a diaper change right before feeding time, but sometimes they just don't wake up, so their food gets pushed down their feeding tube.  Lately, both girls have been getting hungry about 15 to 30 minutes before feeding time, and will be very fussy/crying until food is offered.  I suppose that shows they are progressing, because they used to not really show any signs of hunger.

Well, that about concludes today's post.  I have now been to this hospital 119 days straight (Andrea's pre-term stay plus NICU stay) and have put over 4,400 miles on my car coming and going from the hospital.  I would estimate Andrea has driven about 2,500 miles going to and from the hospital (we carpool when we can).  It will be nice to not have to come down here someday.....

Days 80-88 - April 13-21

Tomorrow the girls are considered full term (40 weeks gestational age).  Their due date was April 22.  I'm not absolutely sure, but I think we have been in the NICU longer than anyone that is now currently here.  Today we changed rooms again.  More on that when I write about Aubrey.

They both had another eye exam on Wednesday.  The opthamologist said that both girls' eyes had improved a little bit from the previous week, but are still not out of the danger zone as far as needing surgery goes.  The opthamologist seemed happy with their improvement, but since they're still ROP stage 2, she plans on doing another exam next week.  These eye exams make both girls extremely mad, so afterwards Andrea and I figured out how she could hold both of them in our old room.

If we had known their cords were so long, we would have done this sooner.  Here are some close-up pictures (Aubrey is on the left, Paige on the right).

Let's talk about Paige first this time.

She has been doing very well.  Her high flow has been reduced to 2 liters/minute with about 30% oxygen. Her feedings have gone well, too.  She set a Roberts record a couple days ago by taking 26 mL in her bottle.  36 mL would be a full feeding on her new fortifier, which makes her milk 28 calories per ounce (normal milk is 20 calories per ounce).  She usually eats between 10-25 mL per feeding, depending on how awake she is.  The rest gets pushed down her feeding tube.  Here she is during one of her feedings.

Paige is eating better than Aubrey is now (not that it's a competition or anything, haha).  I just tell Aubrey that she's being a good big sister by letting Paige catch up to her so that they can go home at the same time.  I know I shouldn't be comparing the two girls, but it does help me track their relative progression (or regression).

Paige has also surprised us in that she absolutely loves being held and snuggled.  For the first two months after she was born, she hated being touched or handled.  Now, sometimes the only thing we can do to calm her down is to hold her.  I suppose that's how most babies are, not that I would know.

Aubrey's turn.

Aubrey was doing well until a couple of days ago when she started to have bradycardias (slowdown in heart rate).  They used to happen only while she was eating, usually caused by stomach reflux (baby heartburn).  The past two or three days they have been happening frequently.  Her cry is starting to sound a little hoarse, also.  She was having so many bradycardias this morning that the NICU people decided it was time to get her into a room closer to the staff so that people can respond more quickly when she has her heart rate episodes.  It was kind of a demotion as far as room changes.  The last time we changed rooms, it was kind of like the equivalent of going straight to high school out of elementary school.  Now we're kind of like in middle school.  We have now been in all three of the twin rooms in the NICU (the current one is the best of the three, so I'll lobby the charge nurses to not move us again until we go home).  Here's our little darling before we changed rooms.

The most likely cause of Aubrey's bradycardias is reflux.  Basically, when she has reflux it stimulates a nerve (vagus nerve) that causes her heart rate to slow down.  Her breathing rate will also slow down, and sometimes she'll even stop breathing for up to 15 seconds.  Like I said, reflux is most likely the cause of these problems, but there is also a chance that she has some type of respiratory infection given the whole picture.  We're told that when preemies get the common cold, it can cause them to have bouts where they will stop breathing, similar to what happens to Aubrey.  Aubrey's nurse took samples to test for bacterial and viral infections and sent them to the lab, so we'll know a little more in 2 days or so when the results come back.  Pending these results, she was put on 2 different IV antibiotics (gentamicin and ampicillin) just in case she has a bacterial infection.

She was changed over from breast milk to Enfamil AR yesterday, which is the baby spit-up formula, to see if that would help with her reflux.  It appears that it hasn't, so her doctor has also stopped her feedings to give her a little break.  Because of this, she got an IV put in her arm so that she can get fluids and nutrition until she starts to eat again.  She has been put back in a heated incubator to help her conserve energy.  She is also back on high flow air given through a nasal cannula.

All in all, Aubrey seems uncomfortable.  Normally she rarely cries, but recently she has been crying often (though not as much as Paige does).  It looks like Aubrey won't be going home as soon as we had hoped.

On a high note, Aubrey was seen by another pediatric orthopedic surgeon.  As far as he could tell, there were no problems with her left leg.  If you recall, we thought she had a little bit of a clubbed foot and torsioned tibia when she was born.  It now seems to be resolved and we are no longer putting her foot brace on.

Height and weight time.  According to one of my phone apps, a typical full-term baby weighs 7 lbs 8 oz and is 20 inches long.

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

     Day 72 - 4 lbs 14 oz   17 1/2 inches

     Day 80 - 5 lbs 5 oz

     Day 88 - 5 lbs 14 oz   18 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

     Day 72 - 4 lbs 4 oz     18 inches

     Day 80 - 4 lbs 14 oz

     Day 88 - 5 lbs 0 oz     18 inches

Days 73-79 - April 6-12

Andrea's doctor was going to induce her on April 8 (38 weeks) if she had not already gone into labor, so the girls would be 4 days old today if Andrea would have stayed pregnant.  Life would be much different, to say the least, but it's amazing how much both girls have grown from when they were born.  They look like "real" babies to Andrea and I now (minus the wires and other stuff).  They've both had a pretty good week overall.

Both girls had another eye exam on Tuesday to test for ROP progression.  Their eyes did not get any worse, which is good.  One of Paige's eyes seemed to have improved from last week's exam.  Both girls are still classified as ROP stage 2, so they'll have another exam next week.

Let's talk about Aubrey first today.  Here's a picture of her in her bouncer.

The couple of times that we've put her in the bouncer, she has seemed to enjoy it.  You can make the thing vibrate, which we did, and we were a little worried it would give her flashbacks of being on the oscillating ventilator, haha.  Apparently she doesn't have a very good memory yet.

She has now been breathing room air for a little over week and has been doing great.  Right now, the only obstacle that is preventing her from coming home is figuring out how to eat all her food.  Her feedings have been increased to 44 mL every 3 hours (up from 42 last post), and she is usually able to take between 10 to 20 mL from a bottle when she is awake.  It seems like she takes a bottle 4 to 6 times a day.  Sometimes she forgets to swallow the milk, and it just comes out of her mouth and down her chin.  She's also been spitting up a few times a day.

Not much else new in Aubrey's world.  I estimate she'll be able to come home in 1 to 3 weeks.

Paige's turn.

She completed her 5-day course of steroids and seems to be a little more comfortable now.  She is still on high flow air at 4 liters/minute and between 25% to 35% oxygen.  Her doctor said that she doesn't actually need that much support, but he wants her to be getting humidified air from high flow to help prevent bloody noses (low flow air is not humidified and was really drying out her nose).

Paige really surprised us a few days ago when she almost magically figured out how to eat from a bottle.  She suddenly just figured out the suck-swallow-breathe process.  She isn't able to drink very much (usually less than 10 mL) but we're happy with that.  She seems to have pretty bad reflux (heartburn), which makes her very uncomfortable at times.  Paige rarely spits up.

Here she is enjoying her pacifier with daddy after getting a nice hairdo.

Paige's lungs are still very immature, so there's a good possibility that she'll have to be on oxygen for a few months when she eventually comes home.

Weight time!  According to a phone app I have, if they had been born today they would be about 7 lbs

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

     Day 72 - 4 lbs 14 oz   17 1/2 inches

     Day 80 - 5 lbs 5 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

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

     Day 72 - 4 lbs 4 oz     18 inches

     Day 80 - 4 lbs 14 oz

Days 67-72 - March 31-April 5

I should have posted a few days ago because quite a bit of stuff has happened in the past 6 days.  By the way, the girls would have been considered full term if they had been born now.  Their gestational age on Friday was 37 weeks 4 days (full term is 37 weeks and up, due dates are 40 weeks).  It's crazy how far behind they are compared to full term babies.  We're told they should catch up by the time they're 2 or 3 years old.

My mom flew into town and visited us and the girls for a few days.  Here's a picture of Aubrey being held by grandma.

Here's a picture of Paige being held by grandma.

My mom enjoyed spending time with her granddaughters, and the girls seemed to enjoy the extra cuddle time being offered by her.

Both girls had another eye exam on Wednesday (or Tuesday). Their retinopathy of prematurity (ROP) has gotten worse and they are now classified as Stage 2.  Here's a quick explanation of what ROP is.  On the back part of your eye is the retina, which is the part of your eye that detects light, just like a sensor in a digital camera.  The retina is not fully developed in babies until just before their due date, so the retinas of preemies have to finish development after they are born.  With preemies, the blood vessels that feed the retina and allow it to continue to grow sometimes grow in strange patterns and expand.  This causes the retina to bulge and, in worse case scenarios, to detach from the back of the eye.  Retinal detachment causes blindness, and ROP is the leading cause of blindness in babies.  To understand why a bulging retina would be a problem, think about a time when you have looked through a very old or cheap window or a bent piece of clear plastic and have seen a warped image.  What you see through the window or plastic is warped due to the uneven surface.  Retinal bulging from ROP is kind of like that, but can be more extreme.  The cause of ROP is still not totally clear, but the leading theories postulate that it is caused by either an excess or lack of oxygen in the blood.  Due to this theory, Paige and Aubrey's blood oxygen levels have been followed and adjusted extremely carefully over the past 72 days.  Aubrey and Paige currently have Stage 2 ROP, which means their retinas are starting to bulge in one or more places.

The opthamologist said that a little over 50% of babies with Stage 2 ROP will resolve the problem on their own with no need for treatment, so Paige and Aubrey are not being treated yet.  They will have another eye exam next week, and the opthamologist said that we should know by then if their ROP will require treatment.  Treatment for ROP consists of shooting lasers at the blood vessels that are causing the bulging.  The laser destroys the offending blood vessels and usually fixes the problem, but treatment for ROP is associated with poor eyesight later in life (i.e., need glasses, have poor peripheral vision, and other strange problems).

Let's talk about Paige now.

Here's a picture of her "holding" her pacifier in her mouth.  She does not have the coordination to consciously hold the pacifier, it's more like the pacifier is in the way of where she wants to put her hand, so she grabs it and holds it in place.

She had a relatively rough week.  She was having to work very hard to breathe on low flow oxygen, so she was put back on high flow air on Wednesday morning to give her little body a rest.  The best treatment for the immature lungs of preemies is overall body growth.  Paige was using way too much energy for breathing that should have been used for growing, so the goal is to help her body to breathe so that she can grow more quickly.

X-rays of her lungs showed that there is a little too much fluid in her lungs, so her fluids are being restricted.  One of the ways to restrict her fluids is to make her milk more concentrated (more concentrated milk means less volume needs to be given for an equal amount of calories).  Now, instead of being fortified with proteins from cow's milk, her milk is being fortified from human donor milk.  This has increased her milk from 24 calories per ounce to 26 calories per ounce, allowing her to reduce the amount of milk from 35 ml every 3 hours to 32 ml, which decreases her daily fluid intake by 24 ml, which is about 5 teaspoons.  That doesn't sound like a lot, but she only weighs a little over 4 pounds.  That's like a 150-lbs person reducing their daily fluid intake by a quart.

A pediatric pulmonologist (lung doctor) was asked to come and see Paige to see if anything else could be done to help her.  He spoke with us on Friday and recommended that we give her steroids for 5 days to give her lungs a kick-start in the right direction.  Andrea and I agreed to this, so Paige started the steroids Friday evening (for my pharmacist friends, she gets Prednisone 1.9 mg twice daily).  The pulmonologist told us that getting steroids at this point in Paige's life should not affect her brain development.

We have tried bottle feeding Paige a few times over the past week, but she is still not grasping the suck-swallow-breath thing and chokes on the milk.  It's a little frustrating, but she'll eventually catch on.  She's very good with her pacifier, so it's only a matter of time until she figures out the swallow part.

Aubrey's turn.

Here she is wide-eyed and bushy-tailed waiting for her daddy to put down that stupid camera and give her something to eat.

Aubrey has done awesome (aside from the whole ROP thing) this past week.  Her nasal cannula is out and she has been stable breathing room air for over 2 days.  And before I forget, if you look in the picture above in the center of the left edge you will see something that looks like an ankle bracelet.  That is in fact an baby ankle monitoring bracelet.  Both girls have them on (except for when they fall off like Aubrey's did) to help prevent crazy baby snatchers from stealing babies from out of the NICU.  After Aubrey managed to kick hers off, we had fun telling her that she was clear to make a run for it and escape her prison cell.

Aubrey's feedings are up to 42 mL every 3 hours (from 40 last post), and she did awesome bottle feeding on Friday.  Of the 4 times that we attempted to feed her while we were there, she had a low of 12 mL and a high of 19 mL.  What she can't finish goes down her stomach tube.

Given Aubrey's quick progression this past week and Paige's little setback, it seems that Aubrey will probably be coming home with us a couple of weeks before Paige does. That will make things very interesting for us, because once a baby is discharged from the NICU they are not allowed back in until they are old enough to be a visitor (visitors must be 3 years old).  The reasoning behind this is that the NICU doesn't want sick babies from the outside world spreading germs around the NICU.  If sick babies need to go to the hospital they go to the pediatric unit.  Hopefully Paige will understand this dilemma and get better in a hurry :)

Weight and height time!  According to a phone app I have, if they had been born today they would be about 6 lbs 5 oz and 19 1/4 inches.

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

     Day 72 - 4 lbs 14 oz   17 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

     Day 72 - 4 lbs 4 oz     18 inches