8+ months

Why, hello!

We had a long stretch of time where there wasn't much to write about since not much was changing for our babies, but there have been a lot of changes recently.


As of last week, Avery is officially completely off of oxygen support both day and night.  She continues to develop and do very well at home.  Her physical therapist made a comment that if she didn't have a list of all of Avery's diagnosed medical problems in front of her, she didn't feel like she'd know she wasn't looking at a normal baby.

Check out those cheeks.



Wren stayed on her course of slow improvement while living on the oscillator until last Wednesday.  Towards the end of February, once we were able to start holding her regularly, she started showing signs of improvement and slowly developing.  She's still behind where Avery is at, but she has become more interactive and looks at us and sometimes smiles.

This has been a long time coming, but she finally transitioned off of the oscillator and onto a conventional ventilator last Wednesday (yep, the same device she was using back when she was a newborn).  Among the doctors, there was a spread of optimism and skepticism about whether she'd be ready to handle it this time around, and sure enough, she did great.  Almost right from the start, she seemed generally happier, became more interactive, and improved further.  She was doing so well that they were able to drop her oxygen all the way down to 21% (which is the equivalent of room air) and a fairly low pressure.  At that point, the only benefit she was getting from the vent was that it helps add a little pressure to inflate the lungs.

A couple of days ago, she was able to move one step further and transitioned to a home ventilator (in this picture).  Her step to this happened quicker than anyone anticipated and has been very encouraging to the doctors.  So encouraging, in fact, that they met with us today in a care conference to discuss getting her home.

It was starting to feel like we'd never have this conversation.

Dr. Christensen said that the only thing really keeping her from coming home now are the need for myself and Shannon to get trained up on all aspects of her care, and getting private home nursing figured out.  The process for all of these things is beginning now.

All at once, we are thinking that we can do this, but we're also still terrified. That part hasn't gone away yet.


For now, I'll just focus on the fact that I am feeling really grateful and hopeful.

Day 181

Avery is still showing signs of progress at home.  She is becoming more interactive and loves to watch people when they talk to her.  She is still gaining good weight.  We met with her PA in the pulmonology office last week and they were pleased with her progress.  We started weaning her oxygen by taking her off oxygen support altogether during part of the day each day.  We are supposed to build up to two times a day for two hours each in which we remove oxygen and just watch how she does.  So far she's done great with it and doesn't show any signs of labored breathing.  One possible concern we are watching is the neurology office in their last checkup seemed to be a bit concerned with Avery's head size and the firmness of her soft spot as potential indications of problems with her shunt system.  They requested a new head ultrasound be done, which we did last week.  I watched it and could tell that the ventricle on the left size was really quite abnormally large based on what I've seen in these images in the past.  This could potentially indicate a problem like the shunt beginning to malfunction or clog up and not drain out fluid like it's supposed to.  When these devices fail, they are sometimes accompanied with symptoms like being in pain or uncomfortable.  Avery has been acting more irritable the last three days or so, but it's unclear why.  We have a follow up visit next week to sit down with the neurologists and talk about it.

On the plus side, we had a great experience in the hospital the other day when we had taken Avery in for an appointment, and the physical therapy / occupational therapy people were there at the same time, so we got to get Wren and Avery side by side, sitting up, and looking at each other.  It was really fun, and besides having the girls together in Wren's room for Christmas, I don't think we've had the girls touching or being side by side pretty much since they were born.

Wren's progress has still been up and down of late.  Since we last wrote, she has gone through another transition of spending time, the time about a week, on the ventilator, and switching back to the oscillator again after a CO2 spike.  She has been back on the oscillator a week or two now and is finally back to settings again where she could be weaned off, but the doctors are choosing to hold off to give her more recovery time for her lungs.  For us, this translates to not getting to hold Wren once again, and her being uncomfortable because she can't move.  You can see in the pictures she is also wearing a sock on her hand, those have been making appearances on and off in part because she started scratching her face with her fingernails a lot, and in part because she started grabbing all of the tubing she could find, like the g-tube connections, the vent connections, and other general wires, and yanking on them hard.  Her new pastime is keeping the nurses and RTs on their toes by popping out her trach tube a few times every day.

Yesterday, we had a bit of a scare with her that turned out to be a non-problem.  While I was there reading to her, she was resting peacefully for part of the time, then suddenly started moving a lot in discomfort.  This is normal for her, because she is still having withdrawals from pain killers, and from time to time starts to get really fussy and arches her back, kicks her logs, cries, and so forth.  So while she started fussing I tried comforting her, and she pushed really hard on her trach tube which had the effect of pushing the trach some out of her throat rather than popping the tube off of the connector.  Suddenly, her face and lips turned purple.  I was too surprised to react appropriately to it, but fortunately the medical staff is well trained to deal with these situations.  When her nurse of the day Gretchen saw the color change and a heart rate drop off the chart, she felt for a pulse and immediately yelled out for someone to call a code and to get people there immediately.  Before I understood what was happening, I was moving out of the way for several doctors and other people to run into the room and start checking out Wren.  A code was called over the hospital intercom and other emergency staff came showing up.  I watched Wren's nurse administering CPR, and no pulse returning for a moment, and for a brief second I was afraid I could watch the worst happen, but almost as suddenly, her pulse returned and her oxygen sats returned as well after the RT quickly switched out her trach for a new one.  While this was going on, I had no idea what was happening, but luckily there were great nurses to comfort me while I stood feeling helpless.  After things settled down, it was clear that some simple problem was likely to blame, and people filtered out.  The doctor had an EKG and ultrasound ordered to check on her heart, but it appeared that the issue was most likely related to her vagus nerve.  The doc told me that sometimes when trach kids put a lot of pressure on the trach, they can press against this vagal nerve, which if done with enough force, can cause them to suddenly pass out and lose heart rate for a moment which is what happened.  So, not a big deal, but I was definitely freaked out for a short moment there.  It turns out that Wren just wanted some extra attention...or maybe she didn't appreciate me reading Hitchiker's Guide to the Galaxy to her.  She is ok and back to normal now and has had no other such weird scares, but wow, this girl keeps us on our toes.

I'm adding this to the list of things she's going to be grounded for when she finally comes home.  So far her grounding is up to 10 years.

Day 160

Wow, it's been three weeks since we wrote anything.

Our Christmas was absolutely awesome.  The amazing staff at our NICU got together and sponsored Christmas for us which meant that many generous people bought gifts for us and all of our kids.  We have a pretty big family, and the fact that they did this for us was no small feat.  It was a great experience for our kids to see how many people care about us.

Wren in the PICU had still been on the oscillator, and as a result we had been unable to hold her for something like 35 days.  We had told our nurses there that we were hoping to bring our entire family into the Wren's room on Christmas day assuming everybody was healthy (no small miracle).  When we got in that day after opening presents at home, Kyndall our nurse and Sabrina (RT) had been planning to surprise us with getting to hold her.  This is a bit of a production since the oscillator uses thick, rigid tubing that has very little wiggle.   After about 20 minutes of prep time, however, it worked!  Shannon got to hold Wren, which seemed like a perfect ending for this great Christmas.

I watched Shannon holding our daughter, and seeing our entire family in the same room for the first time, and it struck me that this had to be the most blessed Christmas we have had together.  

While we were there we sung a Christmas carol while Wren watched her brothers and sisters.

                                     

A few days after Christmas, Wren transitioned to a conventional ventilator.  She seemed really happy and was doing well on it, but after a couple of days, her CO2 suddenly spiked and she had to be sent back to the oscillator again.  Sadly, she tested positive for another bacterial infection, which looked like a repeat of MRSA according to the lab.  She was put on a set of antibiotics once again, and back to the drawing board.  Within a week or so, she seemed to be back to making progress.  However, about a week ago suddenly her CO2 once again spiked, and our fears were again confirmed when she was found to have ANOTHER bacterial infection, a couple of days after her last antibiotic course had run.  This time, it involved, MRSA, Klebsiella, and one other one that I can't remember.  The result was she started feeling sick again and her respiratory needs went back up.

This was the third time she got some kind of infection since at the PICU.  I hope that this rate of infection is not normal, because this poor baby cannot seem to make any progress at the rate things are going.  All of the infections she has gotten have been with bacteria that are commonly present in a hospital setting.  So, if she was at home, she wouldn't be at such risk of these infections, but she can't seem to get home to us, because she keeps getting sick which halts her progress.

As of today, she is again getting back on track.  Her antibiotic course is almost done, she is now receiving full feeds of 70 mL / 3hr via the G-tube, and her TPN is no longer needed.  I talked to the nurses and doctor a couple of days ago about the need to get us holding her and helping take care of her again, and she was doing well enough today to support putting her back on the conventional ventilator once again.  We are hoping it goes well this time, but now I am cautious.

                       

On another note, Avery continues to do really well at home.  She is eating a lot, sleeping very well, and starting to smile once in a while.  It's great!  All she needs now is her twin sister.

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.