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.