Day 139 Post Operation(s)

It's been quite a while since we provided an update, and we've had a lot of questions.

There will be a couple of detailed pics here, just as a note if you're squeamish.

Avery is still doing well at home.  She is up above 9 pounds, eating and sleeping well, and still pretty responsive to therapy.  She still does have a big umbilical hernia, but hers looks like it will eventually go away on its own.  It's so nice to have her here.

Since we last wrote, Wren had her three surgeries done back to back for the tracheostomy, the fundoplication, and the G-tube.  It seemed like those went smoothly though it took a long time.  Seeing her afterward was difficult, because I was happy that she had done so well but at the same time recognizing that having a trach and the other stuff is now her reality.  We of course hope that she will eventually be able to work those things off, but we also know that it doesn't always work out that way.  For now, we just need her to recover enough to come home.

The nice thing is it's wonderful to finally be able to see her face.  

It did take a bit of getting used to, to see her like this and with the G-tube.  Here's the full setup:

TheG-tube is the little roundish plastic piece on her stomach.  She is not yet eating through that but will soon.

Post-Surgery

In the days following, we were hoping that Wren could show us some good progress once she recovered.  Instead, after a few days she regressed again, needing nitric gas and aggressive support on the oscillator.  She was not exhibiting any symptoms of sickness, but we were insistent that they evaluate whether she had any new infections, since this was the exact sequence of events that happened for her last time she had an aspiratory infection.  The doctors did so, and a lab culture came back very quickly that she is positive for some level of a MRSA bacterial infection.  This would be her third infection with another new one, and each time these seem to set her back to step 1, so this was really crappy news.  Luckily since we identified it fairly early on, they were able to get additional antibiotics to address this (MRSA is resistant to normal antibiotics, hence the "R").  She started to recover once again, a bit slowly over the next few days.

Then last Thursday, the doctors noticed that she started to regress again, and started looking pretty swollen in her abdomen.  They were concerned by how she was acting and so ran some new x-rays on her abdomen, to discover some sizable pockets of air sitting in the abdominal cavity.  Apparently this sometimes happens after a surgery and can simply be residual air leftover from when the cavity is open during the surgery, but usually works its way out within the days following.  In this case, since it had been a week since the surgery and the pockets were quite big, they grew concerned that she might either have a hole in her stomach wall or potentially in her intestines, the latter of which being a really big deal to fix.  The pediatric surgeon checked it out, and decided to operate immediately.  She reopened her incision site and put a scope in, identifying the culprit as a hole in her stomach close to where it was tied around her esophagus and where the stomach connects to the spleen. Apparently, during a routine part of the fundoplication procedure, they cauterize the blood vessels connecting to the spleen, and in this case, the cauterization was a bit too much.  A few days afterward when the cauterized issue dematerializes, it ended up leaving the hole where air and fluid can escape and began causing an infection.

After a five-hour surgery, they were able to identify the problem and completely fix it.  Unfortunately, however, due to the mistake, she now needs to have an additional couple of tubes temporarily to help drain fluids and air and ensure that all the signs of infection were removed.  Here is the result for this poor girl:

You can see an extra tube now through her nose and another one on the left of the stomach that goes up to where the spleen is at on the opposite side.  Both of these are to help drain any bad fluids.

On the plus side, since this surgery occurred, she has begun to recover once again.  She is now completely weaned off of the nitric gas, and soon should be weaned off of the oscillator and back onto the conventional ventilator.

This poor girl has been through a lot, and I feel sorry that she's spent so much of her little life being sedated.  She's actually gotten to the point where she kind of resists the effects of morphine because she's had a lifetime's supply of the stuff.

As another plus, with her being in the PICU now, we have finally been able to bring Hailey in to meet her.  We did so today for the first time, and you can't quite tell from the picture below, but Hailey was in shock to discover that she had ANOTHER "bebby".  I kept telling her that this was Wren, and that she had not one but TWO babies, and she just whispered in awe, "two bebbies...".  It was great. 

We hope Wren continues on her upward path.  It may be slower than we like, but like many things in life I'm learning that the direction is sometimes more important than the speed.

Day 128

Today we met with several doctors and other medical staff in a large conference room in the NICU to discuss next steps for Wren.  The purpose of this meeting was to address Wren's needs and any of our concerns with moving forward on having a tracheostomy done along with a fundoplication and a G-tube installation.  Present were the neonatologist, pulmonologist, ENT, pediatric surgeon, nurses, care coordinators, and a couple of others.  We went around the room from person to person and they each explained what procedures would look like from their perspective, why they think it's needed to move forward, and they let us ask questions so we could get as informed as possible on a lot of topics.  This isn't the first time we've talked about all of this stuff, but this was our chance to give the final go-ahead or to refuse the procedures.  In the end, though neither Shannon nor myself are in any way looking forward to Wren having a trach, we both feel that this is the best thing for her moving forward.  These three procedures will be done back-to-back tomorrow starting in the morning.  Some details for those who are curious:

A tracheostomy involves making an incision on the front of the throat and into the trachea, and then inserting a small device that rests in the resulting hole.  I snapped a picture of an example trach tube:
Once this is done, Wren would receive respiratory support from a ventilator, CPAP, or whatever, via the small opening on this device.  Once she's strong enough to breathe on her own, she would simply breathe through this hole rather than through her nose.  Although these can be permanent, the goal for installing one of these would be to be able to strengthen Wren's respiratory state so that the device can be removed and the hole closed up within two to three years.  Having the device will make supporting her much easier, and will free up her face and allow her to be more social and do more regular baby things.  The device needs to be cleaned, maintained, and suctioned regularly, so we'll have to learn how to take care of every aspect of it before she would go home, but with this in place, she could come home with a ventilator if needs be (where it would be impossible for her to come home with the oral tube).  Since this device is installed below the vocal cords, air does not pass through those, so Wren at first will not have a voice, like be able to talk or cry.  Later on, when she's bigger and could breathe strong enough on the open tube, she could get a new type of trach tubes (there are several types) that would allow her to have a voice.

A fundoplication involves tightening up the opening to the stomach where it is met with the esophagus.  The pediatric surgeon would do this by making a few incisions around the stomach, and using scopes inside to find the right spot, then grabbing a part of the stomach and wrapping it around the esophagus opening with some small sutures to tighten that hole.  The hole will not be closed all the way, and the doctor will use a device to ensure that it is left open wide enough for her to still swallow food.  The idea with this surgery is it prevents Wren from having any acid reflux problems making their way up the throat, since this could lead to aspiratory pneumonia, the same thing that just hit her hard a couple of weeks ago.  This procedure is permanent and rarely ever backed out.

A G-tube (gastrostomy tube) is simply a tube inserted straight into the stomach from outside and left with a small opening that Wren could be fed through via food in liquid form from a syringe.  This would start out as a tube dangling off the side of her stomach and would later be shortened down to a small button on her side.  The idea with this is that it gives us and doctors a surefire way to get good nutrition and medicine in her that will best help her grow as much as possible, since right now growing is crucial for her long term outcome.   This is not necessarily permanent and can be backed out if Wren is eventually able to orally eat everything she needs and is very stable.  This can also take a long time to back out just like the trach.

The other thing we know is that the doctors insist on us using private home nursing to bring Wren home to us.  Shannon wrote about this before -- it's just to have a nurse assigned to come work in our home for a specified number of hours in the week to help out with her care.

After all of this, we were also sad that post-surgery Wren would be removed from the NICU and send up to the Pediatric ICU.  We know the doctors and staff in the NICU and have come to love them, and to now take Wren somewhere else on top of everything is surprisingly difficult.

All of this stuff will be life changing for her, but also for us, and for the rest of our kids.  We hope so much for the best for her, and just like any other parent, want her to not just survive but thrive as much as she can.  We want her home with us so she can be with her sister and other siblings, and be with us, and just be baby rather than a medical patient.

This little baby is so loved by so many.

Day 125

Wren is doing MUCH better today. She's still intubated but on a conventional ventilator and was down to 27% oxygen when I went to see her today. She's been receiving lasix daily for the past week which is a drug that helps her pee off all the extra fluid she has been retaining. It seems to be doing it's job so she is back to her normal, acceptable weight now and not so swollen. She is still on a lot of medication and a morphine drip to keep her comfortable so she tends to be very sleepy but she really is getting to a better place.

The nurses have had a hard time keeping her entertained when she is awake for those small amounts of time during the day. She really can't move around with the ET tube in her mouth so she can get restless quickly. We have the best nurses though, for real. They put together a make-shift mobile so she would have something to look at. We just love them! And they love little Wren.

The talk of a tracheostomy is becoming very real. I'm having the hardest time getting on board with this one. I know that it wouldn't be forever and I'm sure we would adjust to it quickly but it just seems like such a huge deal. And it requires a lot of care. If she does get a trach her ventilator tubes can be hooked up to the opening in her neck and she will be able to slowly transition from a ventilator to a CPAP to just oxygen and then, hopefully, to nothing. The advantage to the trach is she can come home regardless of the type of support she's getting and she wouldn't have to be intubated anymore. The docs think this process will take a few years for her. They also recommend that we get an on duty nurse to help care for her. Having a nurse in my house taking care of my baby for 40+ hours a week for the foreseeable future doesn't sound fun to me at all. Will I ever get to just take care of my own baby?! She would also have to get a gastrostomy tube in her stomach in order to eat since children with a trach can easily aspirate when eating by mouth.
Also, a sad thing that would come with the trach is she would go straight from surgery up to the PICU. We would have to leave behind all of the nurses, doctors, nurse practitioners, respiratory therapist, social workers,  etc. that we have come to know and love.

I'm hoping so much for a miracle but also trying to deal with the fact that this may well be the future that's meant for her. Mostly, I'm just so ready for her to be home and healthy. After four months of this I'm dying for our family to be able to all be together.


As for Avery, she is doing fantastic! She is such a content baby. And, guys, HER CHEEKS. They're the best.

Day 122

Shannon wrote about bring Avery home a week and a half ago.  It's been great so far!  It didn't take too long to get in the routine of taking care of her and using her oxygen equipment.  

We've continued to talk to the doctors about the likelihood of Wren having a tracheostomy done in order to come home.  We have a consultation with a neonatologist, pulmonologist, and ENT next Wednesday to make final determinations.

While we're not in any way excited about the prospect of one of our babies having a trach, we are very excited about being able to bring her home, and having that done will get her one step closer.

Day 116

So many things have happened this week. Some good and some not so good.

Avery is home now! She's been home since Monday night and we are loving it! She is the easiest baby I've had, really. I was nervous to have to deal with her oxygen but she hasn't had any problems so far. So sleeps most of the time and when she is awake she just hangs out and looks around. I can count on one hand the amount of times she's cried and it's never for very long. 

The kids are loving on her too. Clark, Hailey, and Penny all have coughs so we have kept Avery in our room and have had to be careful about not letting them in. They are dying to get feeling better so they can hold her and play with her. 

Logan, getting some cuddles in...

This girl likes her beauty sleep. I found her snoozing like this the other day. She's got skillz...

Wren has a had a very bad week.

Monday night, after we headed home with Avery, Wren was very lethargic and not very responsive.

By Tuesday morning she was re-intubated and back on the ventilator. Her CO2 levels where at 103 according to her blood gas (a normal baby's is in the 40/50 range). Levels this high can result in a comma or be fatal so the ventilator was her only option. The doc put her on 3 different types of antibiotics just in case she had another infection and they collected some cultures from her ET tube and sent them to the lab. 3 different nurses, 2 nurse partitioners, and 2 doctors each attempted to place a useful IV but her veins kept blowing. After far too many failed attempts they where finally able to place one in her scalp and administer the antibiotics and pain meds. She had to be heavily sedated otherwise her oxygenation levels would drop drastically. She spent much of Tuesday night with her oxygen at 100% regardless of being on high amounts of morphine. We're are grateful she made it through.

Here she is all drugged up. My sweet baby...

  

Wednesday it was confirmed that she had pneumonia yet again. The IV in her scalp didn't last long and they were quickly running out of ways to give her the meds she needed. The docs considered giving her another PIC line like she had when she was a newborn but in the end decided a broviac catheter would be best. A broviac is when a tube is surgically placed in the neck and into one of the veins under the collarbone. The catheter is long enough to reach the large vein that goes to the heart.
They got ahold of the pediatric surgeon on call and got the catheter placed right away.

Wren, post surgery. You can see the tube coming out of the right side of her neck...

Thanks to the broviac, she quickly received all of her meds and was put on a morphine drip. By Thursday her oxygen had come down to the 40s and her CO2 was back down to the 70s which is still high but fairly normal for her. She'd retained a lot of water though and weighed about 10 oz more than she should have. She had to get a catheter to help her get some urine out and was put on hydrocortisone to hopefully help with the water retention as well.

Puffy baby...

Today (Friday) she's still hanging in there. She's been awake off and on and her pain levels aren't so bad. The antibiotics seem to be doing their job and her latest x-ray showed that her lungs are clearing a bit. She's still having some pretty significant desats here and there. She's also been having some periodic drops in her heart rate which the docs speculate are bronchospasm but could also potentially be seizures. She has an MRI scheduled for tomorrow to make sure it's not the latter.

Because of this latest episode she will almost certainly have to get a tracheotomy. I believe in miracles without question as we have seen many throughout this process so I haven't given up hope yet. We will have to wait and see what happens.

Even with all of these setbacks and trials I am grateful everyday that I get to be Mom to these sweet girls. God knew what he was doing when he sent their precious spirits to our family. I can't imagine my life without them in it.   

Day 111

It's been a two-steps-forward, one-step-back kind of week for both girls, but we're mostly excited about the steps forward.

Last week, Wren had done so well on the steroid she received that she was able to breathe on a cannula.  Well, once the drug wore off completely out of her system this week, she finally started laboring more in her breathing to where her pressure was increased enough that they decided to put her back on the CPAP.  This was in part because a chest x-ray showed that her lungs looked a little hazy and weren't quite inflating as well as they would like.  She is on CPAP now with a  pressure of 6.0 and around 40-50% oxygen.  We hope that this is a temporary thing and that she will begin moving forward again.

Avery was off the cannula and just breathing room air for a while, but slowly started desaturating more, and eventually needed to be back on the home-style cannula with a small amount of air (1/8 L).  Despite being back on the cannula, it still feels like she had a great week.  She consistently ate every bottle and did a great job with them since se first tried.  In fact, she has done so well this week that the doctors decided it was time to start getting her ready to go home.  (!!!)

By the end of the week, the doctors were talking about discharging her on Monday, depending on how she was looking.  To get ready for this, they wanted us to come spend a night in the NICU taking care of Avery on our own and managing all the equipment she will come home with to ensure we don't royally mess things up.  So, as I am writing, we are here tonight, in our NICU room that feels like your regular hotel room, getting ready to set up all of Avery's equipment.  There's not that much, just a Concentrator that plugs in to the wall and gives her the regular oxygen input on her cannula, a couple of oxygen tanks for when we need to move her around, and an Oximeter to monitor her saturation and heart levels.

As a final step before discharge, Avery also has to pass a car seat test, where she sits buckled into her car seat for an hour or so with monitoring equipment watching for labor of breathing, or her head slouching forward, or anything like that.  It seems like she did well on the test.  In fact, she seemed pretty bored by the whole thing and pretty much just slept.

She was also very awake today when we first came in. 

Is Avery excited to come home, or having second thoughts?  :

We are hopeful that Avery will get to come home this week.  Our kids are excited to spend more time with her.

Day 104 - Upgrades

This has been a pretty significant week for our babies.  First, on Wednesday they reached 100 days in the hospital since they were born, which was a bummer realization.  Second, they passed their official due date on Friday the 11th, so they are now officially past the 40-week mark.  Third, Wren was on a ten day course of Decatron (a steroid) and was able to transition from the CPAP to a cannula -- which is HUGE progress if she's going to be avoid getting a tracheostomy -- fourth, we got moved to a new room where the cribs are closer together and we can now hold both babies at the same time (!), and fifth, Avery had a few surprises for us today when she decided it was time both to get rid of her cannula and to try out bottle feeding.  She's done great with both.  Wow!  We are feeling incredibly blessed this week to watch their small milestones that are huge to us.

Here is Wren just a few days ago, still on the CPAP with a good amount of pressure (7.0) and fairly high oxygen (~55%).  By administering the steroid, the docs were able to get her progressing again and to move not only to a cannula for less intensive oxygen support, but also on about 5.0 Liters of flow at 28% oxygen.

Wren seems to be very happy without the big old CPAP mask in her face all the time.  I think the mask made it hard to see, and it was also very noisy and had constant pressure on her face and head.  The cannula is much more comfortable and also quieter.

We got to hold the girls together for the first time on their due date.  It rocked.  They snuggled right in to each other and got back to the business of kicking each other's legs, just as they did back in the good ole' days in the womb.

Avery was looking pretty cute with her cannula just a few days ago...

...but today she decided it was time to be done.  This morning at 7:00, she pulled the cannula out on her own, and was sleeping peacefully.  The docs saw her saturation levels sitting at 99% and decided that she was telling them it was time to try breathing without the tube.  This was not on anybody's radar -- in fact, a couple of days ago it still looked like she would go home with some oxygen support -- so she's pretty much in charge here.

Avery tried a bottle yesterday, but was too sleepy to be interested in trying.  Today, they gave it another go.  She figured it out almost instantly and had none of the common problems (coughing, dribbling milk, eating too fast).  She's a natural eater.  The nurse practitioner who gave her the bottle was surprised with how well she did.  Shannon got to feed her another bottle a few hours later.  Another huge milestone!

Shannon had a glow on her face when she came home today.  I asked her how it went, and she told me simply that she was able to do some "real mom and baby stuff" like giving Wren a bath, feeding Avery a bottle, and holding both of them.  These things may be be simple, but they're monumental to us.  It's been a great week and is making us feel like maybe there's a light at the end of the tunnel.

Day 98

During the past week, Wren has been given a 10-day course of a steroid to help her progress with breathing.  As soon as they put her on the medicine, she was able to drop her oxygen needs from 60% down to 28%, the lowest I've ever seen, and has dropped her required CPAP pressure from 9.0 down to 6.0, and this should drop further to 5.0 tomorrow.  Much of this improvement is likely thanks to the steroid, but even so, it's good to finally see her progress some.  There isn't a whole lot of time for her to be able to prove to the doctors that she's not going to need a tracheostomy to come home.

Avery is also doing well on her own and has been able to drop to a cannula pressure of 1.0 Liter per minute and is holding her oxygen in the mid-30s range.  The big next step for her is to get her to feed from a bottle, but in order to coordinate the suck/swallow/breathe reflexes, she needs to be breathing stably, which includes breathing sufficiently slowly.  Right now, she breathes at a fast rate of around 80 - 100 breaths per minute, and they'd like to see that consistently drop below 80 and with lower oxygen needs in order to try the bottle.  We may be trying her out with her first bottle tomorrow if she does well enough as they evaluate her in the morning rounds.

Here are a few of the latest pics.  They're still growing!

Avery





Wren







Every once in a while, we can catch a glimpse of what their faces look like without masks and tubes.

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.