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