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.