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.