Day 91

We have some great nurses, Cindy and Elisha, who last week picked up some rad Halloween outfits for our girls.  So, I'm basically saying that my nurses are better than your nurses.

Naturally, we had to bring in all our kids to the hospital in costume so they could see their baby sisters dressed up too.

Here are Avery and Wren, respectively, dressed up. I only thought it appropriate to give them some trick or treat candy that reminds me of their medical bills.  That's my way of saying "I love you."

Shannon took Penny (black cat) and Logan (Harry Potter) in to see the girls, so I don't have any pictures of that.  I did get to go in with Clark (rocket), though, and snapped a couple of pictures of him watching over his babies.  This kid is usually so loud and crazy, so it's really funny to see him be purposefully quiet and sweet.  It throws you off.  He loves these babies.

What's next, yo

We also met with Dr. Teppits, today, a pulmonologist.  He is here to begin evaluating the girls' respiratory needs over the coming weeks, and to help us determine what needs to be done moving forward to get the girls closer to coming home.  After a short meeting with him, he shared that he feels like the most likely scenario that could play out will likely be Avery going home with a small amount of oxygen support via a bi-nasal cannula on 1/16 L/min or so (this is not much support considering she was on 6 L/min only a week ago).  He thinks she will likely end up needing a G-tube for feeding, but they will monitor her progress to evaluate this further.  A G-tube is basically just a tube that goes directly into the stomach from outside the stomach, and parents and caretakers feed the baby by basically injecting the food via syringe straight into the tube....sounds gross to me also, but I don't think it's as scary as it sounds.  For Wren, he feels like we need to watch how she does for the next 10 days or so as she approaches 40 weeks, but if she doesn't show some pretty significant progress, they are going to want to start talking about performing a tracheostomy on her.  This to me does sound scary, as it involves a commitment requiring some in-home nursing and extra support for maybe up to the first 3 years of life.  It involves putting a hole in the throat that she could breathe through, and would also mean that she would need a G-tube like her sister, and would not be able to talk until the tracheostomy was gone.  There could potentially be implications with her speech and ability to eat food later on once the tracheostomy could be removed.  We are hopeful that she does not need to go this route, but we have learned with this girl, that all you can do is wait and see.

We are grateful to God that we have been blessed with these babies.  If they end up needing to come home with multiple special needs, I know that we're going to need some extra strength.  Extra strength Tylenol?  I don't know, but something.

Day 90

The girls are now 90 days old! Crazy, I know.

Avery is really packing on the pounds and now weighs 5 lb. 15 oz. She has gotten down to a pressure of 3 on her vapotherm (the nasal cannula). She started at a pressure of 6 so she is doing really well. If she can get down to about a 2 and keep her oxygen needs in the 20-30% range she can transition to a more manageable form of oxygen and be one step closer to coming home. She has yet to attempt any feeding by mouth so that needs to be checked off, as well as a few other things, before they will even talk about discharge, but she's getting there! And the cheeks. Oh the cheeks! They are so very pinch-able. As you can see in these photos, however, she clearly doesn't approve of that sort of thing.        

Wren enjoys taking things incredibly slow. She's quite a bit behind Avery in the weight department at 5 lb. 3 oz. and her support needs haven't really changed much at all. She's still on a CPAP with her pressure set at 7 (she would need to get down to a 4 or so to graduate to the vapotherm) and her oxygen is usually in the 50-60% range. Maybe mid 40% on a really good day. She is very dependent on the pressure and can't breathe on her own for more than a few seconds without it. The word "tracheotomy" was mentioned in regards to her and that idea terrifies us!! If she needed to get that done it would still be very far down the road but we are hoping and praying that she will start to progress and it won't be necessary. On the up side she's starting to be awake for longer periods of time and the physical therapists have been pleased with her motor development so far. That's good to hear because the Docs think that's where her brain damage occurred so she may be already compensating for some of that! It's hard to know for sure this early in game but we have high hopes.


Wren's slightly smaller than Avery's but still very pinch-able cheeks. She seems to be practicing her kissy lips in the second pic.

Day 79

Our girls have some new digs. Not only are Wren and Avery BOTH in cribs now, the nurses also nabbed some mobiles.  Check them out:

Avery

Wren

Both babies are doing well and still in the slow progress phase.  They have been receiving weekly eye exams, which is pretty nasty sounding - it requires the ophthalmologist to apply small braces that force the eyes open, and to use tools to move the eye about and examine it to see how the blood vessels are growing in from the back.  In premature babies, and especially micro premies like ours, there is high risk of eye problems requiring either surgery or special glasses.  The rate it with a "1" being vessels terminating in the central area of the eye, a "2" being a ring around that, and a "3" towards the edges.  In all the exams, both Avery and Wren have consistently stayed at a 2, with indications of some concern but no definite problems identified yet.  The ophthalmologist did say that he was surprised that Wren's eyes have held stably, considering the respiratory distress she went through.  Apparently, the development of these vessels hinge largely on the baby's respiratory ability, but this is also partly why they keep lights low in NICU rooms and keep babies' eyes covered for much of the first few weeks of life.

We are getting closer and closer to seeing a discharge date for Avery some time in November, but all indications for Wren are that, most likely, she she still has multiple months left.

I guess that gives me a chance to read more books with her while she's getting stronger.

Day 74

Our girls are still doing well.

The big news today was that a Physical Therapist comes in daily to spend time with both of our girls, and today was her first time working with Avery.  She assessed how she was doing and told Shannon that she thinks that Avery is doing surprisingly well with her motor control for her age considering the brain damage she has experienced.  I guess there's quite a bit they can already tell at their current age (36 weeks), and it sounds like so far her indicators are positive.  That can change, because there's still a lot of development that the brain needs, but it's still encouraging.

Also, Wren is now big enough to wear pajamas!  Her oxygen has finally gotten below the consistent 50's and is now in the high 40's in addition to having the pressure dropped.

All good things.

Keep it up, ladies.

Day 70 - Brain Surgery == Piece of Cake

Avery made through her third surgery today!  The neurosurgeon was able to successfully put in the shunt this morning after a two hour procedure down in the surgery wing.  Shannon was a bit stressed out to watch Avery get wheeled out, but we're just glad that she made it through this surgery.  This was the big one that needed to work in order for her to have a workable way to keep going strong and be able to come home.  When she came back to our room, she was of course under with anesthesia, but it was nice to see her without the big old lump on her head.  There's still a bump there, but it's now much smaller.  The tubing ended up going behind the right ear, since the doctor decided to place the tube in the right side in case Avery needs any stomach work done.  Hopefully that is not the case, he's just leaving the space available there. Within an hour or two, she was doing pretty well at coming off the medicine and waking up:

We are blessed once again.  What a great girl!  Maybe you can be done with surgeries now, ok?  Ok.   She agreed.

Wren had a nice restful day.  She was quiet most of the day, and was able to get her oxygen down to the mid 50's, which is not bad -- when she's situated on her back, it tends to be a bit worse.

Day 68

It's been another two-steps-forward, one-step-back kind of week.  While Avery did well breathing on the cannula for a while, the doctors noticed she was steadily having to work harder and being just a bit shorter on breath.  While they might have normally let her work through that, they really want her to be in a good state for her surgery on Monday, so she ended up going back to CPAP a day or two ago.  On the plus side, though, she is now officially big enough (past 1800 grams or about 4 lbs) to wear premie clothes!  Behold:

Her surgery on Monday will be similar to last time.  There will be a neurosurgeon, a nurse practitioner, our neonatologist, regular nurses, and anesthesia.  She will go under general anesthesia and be placed on a breathing tube with a ventilator, the surgeon will make an incision at the same place where the reservoir in her head is at and will pull that out.  He'll place a new device in pretty much the same spot.  It looks like this thing:

The stem on the left goes on the ventricle and has pores to pull in the brain fluid.  It goes to a little reservoir on the end of it and then a small valve that controls the flow of fluid, which is really the critical component.  The tubing will then run from the top of her head, behind her left ear, down the back of the neck, over the shoulder and down to the stomach, where a second incision will be made to place the remaining tubing coiled up in the abdominal cavity around the stomach. This will allow for brain fluid to be slowly drained in that cavity and then reabsorbed by the body.  It sounds like the tubing will visibly protrude from the skin at first, but she will grow into it and it will eventually be invisible.   Though it's hard to tell in the picture, there is quite a lot of tubing there that will be long enough for her to grow as tall as six feet or without needing a replacement.  So, basically, in our vertically-challenged family, she would probably never outgrow it.  

I'd like to take a quick break and give a shout-out to Kersten for making it through the details of the surgery.

It sounds like the surgery itself isn't particularly difficult and is fairly quick.  She starts at 7:30 and should be done within a few hours.  The biggest immediate risk of the surgery is the risk of introducing an infection, the same as any other surgery.  The other big risk is that the device itself can fail early on, impeding the flow of fluid and again causing CSF to build up in her brain.  Dr. Cherny said that the statistics are roughly showing that around 30-40% of these devices fail in one way or another during the first year, and more like 50% fail by the end of the second year.  On the same token, there are some kids who go through their whole life and never have the equipment fails.  If it does fail, it would require another surgery to pull out the existing equipment and replace it with new stuff.  The trick is, since she won't be continuously monitored when she's at home, we're supposed to learn how to recognize when she is showing symptoms that the pressure is building in her brain.

For Wren, her oxygen needs remain high, but she still shows no signs of regressing to the point of needing to get back onto a ventilator.  Her blebs have continued to remain down, and she has slowly continued growing.  Within a week or so, she should be big enough to graduate out of the enclosed isolette into a crib.

Day 65 (and ain't nobody got time for CPAP).

Avery continues to make exciting progress.  Check it out:

No CPAP!  She's moving on up in the world and now has a cannula tube on her nose.  Our nurse Elisha said she's been doing pretty well with it all day though she did have her oxygen bumped up a tiny bit.  She is that much closer to completely independently breathing without assistance.

In other news, the neurosurgeon is thinking that Avery is ready for a shunt insertion, and this will probably end up happening Monday.  At the same time, he will remove the reservoir in her head, so her giant goose egg will go away!

No updates for Wren today, other than she's still on the bottom of the growth curve and they are trying to continue to help her up by adding in some extra calories to the breastmilk she gets.  Part of this is because she's so small that a lot of her calorie intake goes toward just keeping up her breathing levels, her normal functions, and keeping her small body warm, which is part of why they stay in the incubator-type isolette until they are a certain size.  Wren is about 300-400 grams shy of being big enough to have her isolette be opened on the top.  At current rates, she'll probably be there within a few days or at most a week.

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.