Day 64

So, Avery is big enough and gaining enough weight that she has graduated from her incubator to a crib...you know, like a real-life, for-reals baby!

She is eating well and still on feeding tubes, but slowly improving on her oxygen needs. I got to hold her today and read to her.  I didn't have my normal book handy for her, but she did seem very excited to learn about Stuxnet and cyber warfare.  Riveting stuff.

The neurosurgeon evaluated her today and is starting to think she is fairly close to be able to have a shunt installed to manage her hydrocephalus.  From what I understand, he would install the shunt the same time as remove the reservoir from her head.  As a result, she would lose the giant bump that's always on her head, and would have a permanent system to hopefully work well in draining out her brain fluid adequately.

Wren is still in the incubator (isolette).  She has been pretty edematous lately, meaning that she is still retaining too much water and this ends up resulting in some extra fluid on the lining of her lungs which somewhat inhibits her breathing.  To counteract this, she is on diuretics which help her kidneys to work hard and create more urine to get rid of excessive water.  This in turn means she ends up being low on Sodium and Potassium, so she now gets NaCl + K additions to her food.

I got to give her a bath today, which was my first time, though Shannon's done it a few times.

She did really well and didn't have to be bumped up on her oxygen (60%) as much as she usually does for cares.  (~80%)

I talked to the doctors about what they think about when they babies can get discharged, and at this point there best estimate is "at least their due date or later".  That would set a marker for about mid November, since their due date was originally the 11th.  When they were one baby instead of two trouble-making babies.

So, all of our kids at home have met the twins...except our youngest.  She has not been able to come in to the hospital and see them, and I've been wondering if meeting them is going to flip her world upside down.  She does love babies in general, and is almost constantly packing around a doll of some kind, and caring for it, calling it her "bebby".  In fact, the latest thing she's been packing around is this premie-sized pajama for the twins that Shannon picked up last week, but I still wonder how she'll do when she meets a new non-inanimate baby that lives in our house.

Our kids are all close in age, and with having six under our roof aged 7 and younger, I foresee a lot of fun adventures in our future.  And less sleep.  Meh, who needs that stuff anyhow?

Day 63 - Two Months (and Change) Down

Hi all, it's gotten easy to ease up on updating our blog, with how relatively stable the girls have been. I suppose that's a good thing and a bad thing.

The biggest news lately is that both girls have gotten to a place where they can gain some steady weight and continue to develop.  They may be a bit behind schedule (Avery is the bottom 10% for her weight, and Wren is the bottom 1%), but these ladies are real champs.

Although I haven't written much lately, I did snap some new pictures the day they turned two months.

In this corner, weighing in at a whopping (almost) four pounds, we have Avery:

And in this corner, now entering the heavyweight ring at over three pounds, we have Wren:

A few days ago, I asked one of the neo doctors how he envisioned our babies going home.  He felt that he could say that he sees Avery going home without any oxygen, and Wren going home with maybe a cannula.  That was good news -- if that's the worst thing we have to worry about, piece o' cake!  

We are so grateful for the continued support we get from our family and many friends.  I had no real idea how many friends we had out there until we went through this experience.

Day 56

Avery: is still growing and slowly improving.  The nurses measure head circumference on a daily basis as a way of tracking changes in her hydrocephaly, and today for the first time, it looks like her head circumference went down on its own without having her reservoir tapped yesterday.  I'm not exactly sure that this necessarily indicates anything unless we started to see it happen consistently.  There's a potential that if that kept up, it could be an indication that her brain would be starting to manage the cerebrospinal fluid on its own, which would have amazingly huge implications.  For now though, it's just a single measurement.  We are happy that she is doing so well.

Wren: is still trying to catch up to her sister and gained weight for the third day in a row.  She has been doing well enough that the doctors decided to pull her OJ tube (oral jejunum feeding tube) back to position as an OG tube (oral gastro) terminating in the stomach rather than the small intestine.  She also had her PIC line removed as the last course of her antibiotic from her latest possible infection scare finished yesterday.  It's great that she's needing less medicine and growing bigger, finally.  The bigger she gets, the more chance she has to grow new healthy alveoli in her lungs.

Day 54

The last few days have continued to be good.  Today especially so - this marks the first day in maybe a couple of weeks that Wren gained a substantial amount of weight.  When was the last time you celebrated gaining weight substantially in a single day?  It's easy to monitor on these babies, because the special isolettes they are in have built-in scales that allow the nurses to easily check each morning.  We get daily email updates reporting the latest weight and some other facts and figures about the previous 24 hours.  Usually over the last few weeks, Wren is reported to lost 5-10 grams most days, and gains a small bit every once in a while.  Yesterday, however, she gained a full 60 grams (about 2 oz).  She's still about 12 ounces behind Avery, but the medical team was very happy about this.  She needs to get bigger to keep progressing.  The other cool thing that happened yesterday was I got to hold her for the first time in maybe three weeks.  She is finally strong enough that we can do that once again.  It's such a little thing to appreciate, but we are grateful.

Avery is also doing well, though she is still fussy whenever you talk to her or hold her lately.  She's still gaining weight, but remaining about the same with her oxygen settings.  Her head size did not change in circumference from yesterday to today -- that's a good sign that she is handling well how the doctors are tapping her hydrocephalus reservoir.  Rather than tapping three times a week, they decided that twice was still sufficient, but they now extract more fluid.  She is doing well with it, but still is facing somewhere on the horizon the need to install a permanent shunt to manage the fluid.

Day 50

Avery continues to do well, and has really started getting some baby fat, which is rad.  She's finally up to a full amount of food for her size, which is about 1 oz every 3 hours.  Check out those cheeks -- I'm pretty sure I know where most of the extra weight is going.

Wren had another big day.  For the second time she pulled out her breathing tube on her own.  While it wasn't planned, the doctors decided to take a hint from her that she really didn't want tubes down her lungs anymore and let her stay on CPAP this time rather than be reintubated.  Our nurses were really very excited about this and about how well she was doing with it.  This is a huge step for her if she is able to successfully stay off the ventilator.  She can take a pacifier now!  She seemed pretty happy about that.

Day 49

After a few days of not being able to see the girls, I made it back in to the hospital today, donned with an exciting face mask.  Shannon is still not feeling well enough to come back in, but we were able to video call for a bit.

These lovely ladies are doing well.  As of the last couple of days, Avery now weighs in at a whopping 3 pounds, while Wren is still at about 2.5.  Wren smiled at me today.  At least, I'm going to call it a smile, because it sure looked like one.  She opened her eyes really wide for a while as I talked to her, looked over at me, and a smile crept out.  Some people say babies just smile when they're passing gas, but hey, if it's only between me and a fart, I'll take that happy face any day.

The twins also had their first eye exam done today.  Yet another thing premies are at risk for is ROP, for Retinopathy of Prematurity, meaning underdeveloped eyes.  This would basically be a condition where the blood vessels that supply the retina on the back of the eye are growing abnormally, and can eventually cause a wide range of eye problems from nearsightedness to lazy/wandering eyes.  In the worst case scenario, the abnormal vessel growth can lead to scar tissue developing at the back of the eye which could cause severe vision problems which may not be correctible with glasses.  Unfortunately, this isn't an easy or comfortable exam, either, since they have to force open the eyelids to be able to shine lights in them.

Anyway, it turns out that (what do you know), our babies are identical, so their eyes looked exactly the same.  The ophthalmologist said that both had a small amount of ROP, but were not determined to be severe enough to need any treatment. They will start to receive weekly exams to follow their progress.  This is another thing that can go either way - it may look better or worse next time they perform the exam.  For now, it sounds like he was impressed that there eyes were in as good condition as they were considering the respiratory and other distress they have both been through.

Day 47

Wren continues to do well.  Cindy (one of our RNs) told me that last night was great for her, and that her oxygen is now down to 26%, which is great.  Some time today, she ended up grabbing her breathing tube and yanking on it, and it came all the way out.  The nurses of course took care of her immediately and helped her breathe momentarily on CPAP.  She was doing so well on the CPAP when this happened, that had our normal neonatologists been around, they probably would have determined to just leave her on it, but our doctors are out on a retreat this weekend and the fill-in doctors did not want to implement any significant changes while the regulars were gone, so they had her reintubated with a slightly larger tube.  The good news is they now no, by accident, that she will do very well on CPAP, so hopefully they will be able to continue with that plan on Monday.

Avery is still about where she was, at 36% oxygen and maintaining about the same status.

In other news, Shannon and I both came down with a head cold and so weren't able to go in and see the babies today.