Days 119-126 - May 22-29

We should be going home this weekend! The latest word (which seems to change everyday, haha) from the girls' doctors is that if everything goes smoothly the next few days, both girls will be going home with us on Sunday.

I haven't taken any pictures the past week, so sorry about that.  Today's post will be info only.  Let's do eye stuff first.  The girls had an eye exam on Thursday, and are both still stable.  Aubrey's ridge (one of the signs of ROP) has disappeared, and Paige wasn't any worse than before.  The plan is for the ophthalmologist to see the girls again this week to check for any changes.

Both girls have been eating well, especially Aubrey.  Aubrey has really taken off in the eating department.  As I explained in the previous post, she was switched over to Enfamil AR formula, which is a spit up formula.  Prior to the switch, it was a good feed for her if she took 30 mL (1 ounce) by bottle.  Now she takes 80 mL or more (about 3 ounces) pretty much every time she eats, which is enough to extend her feeding to every 4 hours instead of 3 so that she can get more sleep.  Her nasal feeding tube was taken out 6 or 7 days ago, and she has really had no problems eating.  It's nice to be able to see a baby face with no tubes attached to it.  It was pretty amazing seeing her go from not eating well to pigging out in such a short amount of time.  Aubrey is probably ready to come home now, but the NICU is nice enough to let her stay a few extra days so that we don't have one baby at home and one in the hospital.

If you compare the eating progress of the two girls to the story of the tortoise and the hare, Paige is definitely the tortoise.  She hasn't made the quick progress that her sister has made, but she hasn't had the setbacks, either.  She continues to slowly improve each day, and has been taking enough by bottle to not need to use her feeding tube.  She is very consistent at taking 50 to 60 mL each feeding (about 2 ounces), which means she has to eat every 3 hours.  Her feeding tube is still in "just in case" and also to give her medications so that she doesn't have to taste them.  Paige is still eating fortified breast milk, and her reflux appears to be minimal.  Paige does not eat very fast, so we have to be very patient with her when she eats.  She seems to like to take a little "siesta" in the middle of her feedings, which is a little frustrating for us.

Paige will be coming home on oxygen and will probably have to remain on it for 3 to 6 months until her lungs can catch up to her.

Well, that about does it for today.  It's weight time! The girls' adjusted age for gestation is 5 weeks, and their actual age is 4 months.

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

     Day 102 - 6 lbs 6 oz

     Day 110 - 6 lbs 15 oz 

     Day 118 - 7 lbs 6 oz     19 1/2 inches

     Day 126 - 7 lbs 8 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

     Day 88 -   5 lbs 0 oz     18 inches

     Day 102 - 6 lbs 2 oz

     Day 110 - 6 lbs 7 oz

     Day 118 - 6 lbs 12 oz   19 inches

     Day 126 - 7 lbs 1 oz

Days 111-118 - May 14-21

Corrected for gestational age, the girls are the equivalent of 4 weeks old now.  Here's a video of Aubrey acting like a baby.

We usually get about one to two hours of her awake and content like this each day.
Here's one of Paige.  She's usually awake and content like this for 30 minutes to an hour each day.

Both girls had another eye exam on Thursday, and their retinopathy of prematurity is still stable so they'll have another exam in a week.

The only thing keeping the girls from coming home at this point is their inability to drink all their milk, so that's mostly been the focus this past week.  As you may recall from my last post, Paige had been doing pretty well, and Aubrey was having some struggles with spit ups and lack of appetite.  We've been doing a little experimenting to see if anything gets the ball rolling a little more quickly.

The first thing we tried was putting both girls on plain breast milk (unfortified).  We've noticed that Aubrey had been cringing and sticking her tongue out with the fortified breast milk, so we wondered if there was some sort of taste issue there.  Both girls seemed to enjoy the plain breast milk and did fairly well on it, and Aubrey stopped making her disgusted-looking face when she got the plain fresh stuff.  The problem with the plain breast milk for the girls is that it gives them too much water.  Due to their immature lungs (especially Paige), we have to be very careful that we don't overload them with fluid because that can make it hard for their lungs to work right.

We then changed both girls over to a Enfamil AR, which is meant to help babies with acid reflux. We didn't really notice much of a difference for Paige, but Aubrey has been doing much better on the formula.  She doesn't seem to dislike the taste, and she has only spit up a few times in the past few days.  Aubrey has been taking most of her bottle nearly every time, and will often take a full feed.  It seems that the formula is helping control her acid reflux and enabling her to actually have an appetite.  She seems to actually enjoy eating since we put her on the formula.  Here's Aubrey eating her formula.

Since Paige had been doing fine on the fortified breast milk, I'm still not really sure why all the experimenting was done with her (maybe just because they're twins and twins are supposed to do the same things?).  We put her back on fortified breast milk and she is still doing fine.  Here's Paige.

I think of all the pictures I've taken of Paige, the last one is the most accurate representation of her.  Her eyes show the fierceness and intensity that she possesses that has carried her through experiences that we wish she would not have had to go through.  While I was taking pictures of her for a little over a minute, her eyes just followed me.  It was really cute.

One of the girls' doctors had another discussion with us about them possibly getting the G-tubes (the kind that are surgically placed through the belly) if they don't figure out this eating thing soon.  We said "no, not interested."  Hopefully we don't have to re-visit that topic next week.

My mom wanted to see their eyes.  I don't have a macro lens for our camera, so here's the best I could do.  Aubrey first, Paige second.

You'll probably have to click on the pictures and really zoom in, but Aubrey's eyes have started to lighten up a little, and are medium gray with a hint of green in the right light.  Paige is harder to catch with her eyes wide open like Aubrey, so I don't have as great of a picture of her eyes.  Paige's look like they're turning brown, but are mostly the baby gray color.  I have green eyes and Andrea has brown eyes.

I think it's about time to do some "look at me now" pictures with barbie.  Here's Aubrey on day 10 and day 118.  That's the exact same nurse barbie in both pictures.

Here's Paige with nurse barbie on day 10 and day 118.

When I see those old pictures I get a little freaked out.

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

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

     Day 80 -   5 lbs 5 oz

     Day 88 -   5 lbs 14 oz   18 inches

     Day 102 - 6 lbs 6 oz

     Day 110 - 6 lbs 15 oz 

     Day 118 - 7 lbs 6 oz     19 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

     Day 80 -   4 lbs 14 oz

     Day 88 -   5 lbs 0 oz     18 inches

     Day 102 - 6 lbs 2 oz

     Day 110 - 6 lbs 7 oz

     Day 118 - 6 lbs 12 oz   19 inches

Days 103-110 - May 6-13

Not much new has happened in the past week.  Andrea and I are really starting to feel like we've been here way too long.  Aubrey and Paige's adjusted age is 3 weeks.  Here are our little monkeys playing together on Cinco de Mayo.  Aubrey's on the left, Paige the right.

Here's a funny one of Paige.  I'm not sure what she's doing, but it looks like she's screeching at the monkey.

Here's Aubrey looking irritated at mommy's attention.

Both girls had eye exams on Thursday.  There weren't any significant changes with the retinopathy of prematurity thing, so both girls are still Stage 2 ROP and will have another exam this week.  For what it's worth, both girls track us pretty well when we're up close to them, and they both seem to hear just fine.  They haven't had any official hearing test yet; I just occasionally make weird noises and the girls seem to respond to them.

We went outside with the girls again yesterday.  It was about 85 degrees, so we stayed out for about 45 minutes. I guess I'll just post a bunch of pictures.  Aubrey is on the left and Paige on the right in until further notice.

Paige on the left and Aubrey on the right until further notice.

Here's Aubrey on the left, Paige right with daddy.

Here's Aubrey with daddy.  Despite my vigilant use of the burp rag, she still puked all over my shirt that day.

Right now, everything is focused around getting the girls to eat, because that's the one thing stopping them from coming home at this point.  Each girl is getting breast milk that has been fortified with a cow-based fortifier to have 25 calories per ounce (breast milk au naturale has 20 calories per ounce).

Let's talk about Aubrey first.

Her reflux (baby heartburn) has been kind of bad the past few days.  She's been spitting up often, and the reflux seems to decrease her desire to eat.  She is being fed 51 mL every 3 hours, and sometimes she'll take a full bottle, and other times she'll eat only 5 mL (the rest gets put down her feeding tube), but usually she'll drink 20 to 30 mL.  The inconsistency is a little frustrating.  Also, she usually does not let us know when she is hungry.  She'll sleep right through a scheduled feed time and not really care.  Here are a few pictures of Aubrey working up an appetite between feedings.

Paige's turn.

She's been eating very well for the most part.  Unlike Aubrey, her reflux is not really all that bad.  She spits up maybe once a day, if that, and eats aggressively.  When she's hungry, she hoots and hollers and tells us all about it.  She hoots and hollers about pretty much everything, haha.  She is getting 48 mL every 3 hours, and usually drinks 35 to 40 mL from the bottle.  Every few feedings she drinks the whole bottle.  She is pretty consistent.  Here are a few pictures of her.

That scab on her cheek is from her scratching herself.  I occasionally cut her fingernails, but I can't safely get them short enough to prevent the scratches.

Both girls are getting more and more interactive with us.  They make pretty good eye contact when they're alert, and seem interested in listening and watching us when we play around with them.  It's amazing how much they've changed over the past few months.

Weight time!  Aubrey is around the 5th percentile adjusted for gestational age.  Paige is around the 3rd percentile for gestational age.

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

     Day 102 - 6 lbs 6 oz

     Day 110 - 6 lbs 15 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

     Day 88 -   5 lbs 0 oz     18 inches

     Day 102 - 6 lbs 2 oz

     Day 110 - 6 lbs 7 oz

Days 93-102 - April 26-May 5

The girls have been in the hospital over 100 days now.  When they turned 100, they got to go on a special trip.....outside the hospital for the first time!

Andrea and I look kind of weird in the picture. Oh well. Aubrey is on the left and Paige on the right in these pictures. Here they are happy with mommy.

And both screaming next to daddy.

The field trip was encroaching on their normal dinner time, so they were both a bit hungry.  Those electronic things in their car seats are portable oxygen and heart rate monitors.  They're designed for adults and didn't like the girls' heart rates of 150, so we constantly had to silence the alarms during the field trip.  Here's a picture of them in the stroller.

That oxygen tank is for Paige.  A few days before we went outside, we spoke with one of the girls' doctors to see if it would be a possibility.  Paige was still on high flow cannula at the time, and it wouldn't have been possible to take her outside on high flow.  So, in part because we wanted to go outside and in part because she was probably ready, Paige was switched back over to low flow (she had previously been on it about 3 or 4 weeks ago, but didn't tolerate it well) and has been doing very well on it for the past 3 or 4 days.  She is currently on 60 mL/minute.

Both girls had another eye exam this past Wednesday or Thursday to see how their retinopathy of prematurity (ROP) is doing.  Aubrey's eyes appear to be slowly improving still, and Paige's eyes were no better or worse from last week, so no treatment is required yet.  They'll both have another exam next week.

There really haven't been too many changes with either of the girls besides that.  Right now, the only thing keeping them from coming home is their inability to drink all their milk each feeding.  I would say that as a daily average they are able to drink about half of their milk.  We try to give them pep talks and explain the situation to them, but they don't seem to listen to us very well :)

Here's Aubrey working on one of her feedings.

When she's awake and alert, she likes to look right at our eyes.  It's really cute.

Playing whack-a-baby with mommy:

We find her this way a lot.  She manages to burrow down in her blanket and get her feet sticking out.

Aubrey's reflux seems to be what is keeping her from progressing more quickly.  She spits up quite a bit.  Poor little girl.

Here's Paige looking at mommy.  She's not quite as interactive as her sister, but she appreciates being held the most.

 Here she is eyeing her rattle toy thingy

Paige has been doing pretty well.  She requires a lot of our attention.  If she isn't being held and is awake, she'll get cranky until someone picks her up and holds her.  We're not really sure how we'll do it when they finally come home due to Paige being so high maintenance.  Andrea bought this wrap thing, and Paige seems to enjoy it, so maybe Andrea will have to walk around with a baby strapped to her all the time.

Here's our two little monkeys snuggled up to mommy. Aubrey's on the left in both pictures above and below.

Well, that's about all I have to report.  Sorry I haven't posted in so long.  It's hard to find a quiet time that is at the same time as me feeling motivated to update the blog.

Let's end with weights. Aubrey's weight puts her between the 3rd and 5th percentile when adjusted for gestational age.  Paige is just below the 3rd percentile when adjusted for gestational age.  Aubrey's head is between the 10th and 25th percentile, and Paige's is between the 5th and 10th percentile.

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

     Day 102 - 6 lbs 6 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

     Day 88 -   5 lbs 0 oz     18 inches

     Day 102 - 6 lbs 2 oz