Day 30

We love the staff at the St. Luke's NICU.  We found out that a few of the nurses that we've seen a lot asked to be champions for our girls, so that they will always be in our room whenever they are on shift.  There are a lot of people pulling for these girls, and we will always be grateful to have so many dedicated people caring for them.

Avery had a great day today.  When we went in to see her, she had a huge poopy diaper.  I know you're dying to know just how much poop, let me just tell you it was a solid good load.  She was also more awake and alert than we have yet seen her.  She just had eyes for her mom and wanted to see her so badly.  Later in the day, she was moved off of the jet ventilator (finally) and onto the conventional one, which is really quiet and lets them get used to the feeling of taking their own breaths again.  Avery loved not having the constant sound of the jet, and was doing so well that they are going to try to take her off the ventilator altogether some time tomorrow.

Wren had a little bit of an issue last night, where at 3 in the morning, her breathing tube accidentally came out of her left lung and popped over and into the right lung stem for a short bit.  The nurses saw it quickly when she had a sudden desaturation.  Her tube was pulled back into the midline position for now, which is just back in the throat where it can again inflate both lungs.  We were worried, because they wanted to wait until late today or even tomorrow to pull the tube back, but for all we know, it could also have been bad to leave the tube in the good lung for too long.  For now, she is actually doing pretty well.  She will be watched closely to make sure the blebs aren't filling back up with air again.  In a chest x-ray she got in the afternoon, the staff were celebrating because her blebs hadn't filled back up with air, and they could even see some more healthy tissue around the site of the damage.  If the problem returns, there is a chance that they could attempt to get the tube back in the healthy lung again, but first we will watch this and see what happens for the next few days.

Day 29

Uneventful days are the bee's knees.  Today was an uneventful day.

Avery has been doing well on the steroids and will continue to be weaned off the ventilator.  The doctor is hopeful to transition her to a CPAP within a couple of days.  That will be awesome to see, so I hope it works out.

Wren kept getting some food residue back in her throat, so she needed to have her feeding tube pushed further down.  It's now pushed inside the intestine a bit on a slow drip.  This will slow down the digestive benefit she'd get from getting food deposited in the stomach, but will prevent her from getting agitated from food getting in her throat.  They can pull that back probably once the breathing tube is out of her left lung.  Somewhere down the road, when she's older and much bigger, she will most likely need to have a lobectomy performed - a surgery to remove the damaged lobe of the lung that was hit heaviest by the infection.  This is because being filled with those air blebs stretched and distended the lung tissue, such that even if it scars over appropriately, it could always present some level of risk to her until it was completely removed.  Unfortunately she won't be able to just make new cells to make up for the lost tissue.

I was able to snap a picture of a before-and-after shot of her chest x-rays.  The picture on the left shows her lungs after the infection and before they moved the breathing tube.  The huge black area are the air-filled blebs where the tissue was damaged by the pneumonia.  At that point, the blebs were getting large enough to push her other lung and her heart some.  In the right picture, this is her as of this morning, with the small breathing tube going into the left lung, the left lung filling nicely with oxygen, and the right lung nice and completely flattened with all the air gone out of the blebs.  It's easy to see with little understanding how much better she looks.  You can also see her feeding tube going through the stomach and into the intestines.  

When they decide to take the breathing tube back so it can fill both lungs again, they are hoping that it will have been a long enough wait that enough healing can have happened in the right lung.

Four Weeks

Wren and Avery are now four weeks old!

Avery's next biggest obstacle is trying to get off of ventilator support successfully.  To do this, she will receive steroids which will help strengthen her lungs just enough to wean down the settings over a few days and finally kick the machine.  If she can do that, she gets one more tube taken out!  We look forward to getting to see this babies without tubes and wires all over the place.  Her hydrocephalus is still being managed via the reservoir.  The doctors tap the fluid about 14-15 mL every other day or so to keep it down.  Coming up with permanent management for that will probably be the last big hurdle she'll have to get through a few months down the road when she's bigger and stronger.

For Wren, we are still just hoping that the breathing tube in her left lung is going to give her the chance she needs to make it through.  The chest x-ray from yesterday showed that the right lung was finally fully collapsed for the first time, with all of the air bubbles gone from the damaged blebs.  That means the lungs can potentially begin their healing process and the slow effort of replacing the damaged tissue with scar tissue.  We won't be able to wait long enough for the damage to fully scar, we just need to wait long enough that the blebs don't fill back up with air as soon as they start normal ventilation again.  Our doctor was researching with another doctor this morning since there is so little experience with this situation.  There is some research literature out there talking about this type of treatment of the lungs, but typically it's used successfully on older children or adults.  There is limited literature available on situations like this, and littler still on cases where the left lung is the only useful one.  The research in some cases is recommending to not leave the tube in longer than 7 days, but we're just hoping that it's in just long enough to give her a fighting chance.

Dear Wren -- we're all for contributing research to the medical field, but don't you think it might be more fun if you just had simpler problems to deal with?

Day 27

Tomorrow our babies will have made it four weeks.

They both had a pretty good day today.  In the early morning, Wren had a temperature spike reading that looked like she had a fever, but it appeared to be a sensor misreading and that she had no fever.  We are still hoping she did not get a second infection.  Wren is getting a new PIC line tonight so they can have a central line for administering drugs and stuff.  This will be her third one so far, and hopefully this time it can stay in until she no longer needs a line.

Avery also had a good recovery day.  She hasn't gotten as weaned off of the ventilator as they hoped by this time of being past the PDA surgery, so the doctors are planning to give her steroids tomorrow to strengthen the lungs and give her a boost to work towards getting weaned off soon.

Today, we had the great opportunity to bring in our other kids to see the babies again.  Meggan brought them by the LDS Boise temple on their way over.


The temple is a great blessing to our family.  It helps us to know that our family relationships are meaningful even beyond death, and that we can be together even after this life.  It's a great place to feel peace.

At the hospital, the oldest three were able to see the babies, but unfortunately this one is too small to go in:


I have a feeling her little world is going to be turned upside-down when she realizes she has younger sisters.  She's never met them so far, and she still doesn't understand a lot that we talk about.

I think the kids all feel a bit off with Shannon and I spending so much time at the hospital and away from them.  I think they recognize that this is a big deal for our family, but I think it can be hard on them as well as ourselves.  They have been good sports so far, but it really helps make this easier on them to have so much great help from people around us.  I've said this before and I'm sure I will again, that the help and support we have received in both small and big ways, both directly and indirectly, has been so amazing.

Day 26

Wren's day today turned out so good that the doctors could hardly believe it.  She worked down to 40% oxygen most of the day and held much more stably than she has the previous days.  Once again, we are blown away by how the doctors were able to pull off what they did.  This is all new territory -- one nurse told me that in 20+ years of NICU experience across hospitals in different parts of the country, she has never seen a situation like this one.  The doctors didn't have anyone to ask about what they're attempting, because no one here has experience trying it.  They don't know how long they can leave the tube in the healthy lung, but there is definitely risk of damage to the left bronchus or even the lung itself if they leave it too long.  They likely won't be able to leave it long enough for the right lung to completely heal up.  However, already on today's x-rays, they were beginning to see the blebs in the right lung shrinking down.  High fives up top, little baby.  You are rad.

Avery had a really good day too.  She seemed much more comfortable as she continues to heal from the surgeries.  Her levels were also fairly stable through the day sitting at around 40%.  The doctors are hopeful that once she is recovered, they can continue to wean her off of support, and hopefully within a week either get her on to a conventional ventilator, or get her off of vent support altogether.

So far, our babies have interacted directly or indirectly with the following:

• 20+ Nurses with 24/7 care
• 10+ Respiratory therapists with 24/7 care
• 1 Perinatologist
• 6 Neonatologists, 24/7
• Nurse Practitioners
• 1 Neurosurgeon
• 1 Immunologist
• 1 Pulmonologist
• 1 Otolaryngologist
• 1 Thoracic Surgeon
• 2 Anesthesiologists
• Anesthetist nurses
• Dietitians
• X-ray Technicians
• Radiologists
• Ultrasound Technicians
• Pharmacists
• 2 anxious parents and ridiculous amounts of family and other people who love them
• Who knows how many guardian angels

They are also given the following:

• Loads of oxygen management 24/7
• Nutrition by IV and PIC line
• Blood transfusions every few days as needed
• Lipids to fatten them up
• Sugars
• Breastmilk
• Morphine and other painkillers
• Phenobarbital and similar drugs
• Sensors to monitor every critical level
• Fancy isolettes to keep them warm and protected from the environment

That about covers it, but I'm sure I'm forgetting SOMETHING by now.

All I really want to say is...

We thank you in advance, you sweet, sweet insurance company, for footing the vast majority of this bill.  

Day 25 and Two Surgeries Down

Avery completed her second successful surgery today.  This one was on her heart to close the duct causing her heart murmur (PDA) by applying a small metal clip to the duct.  You can see in the picture where she was attacked by Lord Voldemort.  As yesterday, it was a bit nerve-wracking to be in the next room and only be able to guess what was going on.  Soon after her surgery, she seemed to be doing really well and was able to have lower ventilator settings.  The positive effect of this change will not all be immediate but will take time.  I think we will see some positive effects over the next 48 hours, but more telling will be what happens over the next few weeks.  Optimally, she will begin to improve to the point where they can take her off the ventilator and also begin feeding her more food.

Wren had a rough day as well.  The last few days we have seen her ventilator needs slowly increase and her condition slowly get more difficult.  Our doctor today met with us to revisit the conversation that she still seems to be in an unsurvivable situation that could lead to a slow but eventual decline.  She told us it would be good to begin talking about when and how we would want her to pass, since it seems almost positive that it will happen.  Later, she consulted with another doctor to try and find if we had any other options whatsoever, and they found a slide in the x-rays that seemed to show Wren's left healthy lung with the bronchus stem going into it at a fairly reasonable angle compared to what they would expect.  Based on that one x-ray, they decided it might be worth trying to fish her current breathing tube into that stem and into the healthy lung to see if they can stop the effects of the blebs in the right lung.  We thought about it and discussed it and decided it would be worth trying, though it's not even clear if they were successful whether she be able to successfully oxygenate her body with the one lung.

Two doctors and nurses worked together to try and find a way to blindly fish the tube in without a camera, and they used x-rays to see if they could visualize the tube going in the right place.  From the next room we watched trying not to be anxious as the first try was unsuccessful.  After the second try, the doctors and nurses reviewed the x-ray and very quickly said "Oh, Yeah!!"  Then our nurse gave us a thumbs up, Shannon said, "They did it..." and we were then crying like a couple of sissies.  Here's a picture of the successful insertion:


The very fact that they were able to pull it off was a miracle.  However, we know that she would still have a rough road ahead assuming they are able to get her to stabilize with the one lung.  As I left, her CO2 levels were high at about 85, and her oxygen was running at 97%.  There is not a lot of wiggle room there.  After this, we know that we have done all we can do, and it really is in God's hands.

Day 24

Avery successfully underwent her first surgery today at 7:30.  The neurologist, anesthesiologist, and a big team of medical staff brought all of their OR equipment and tools up into the NICU and set up shop in the room next to the one we've spent most our time in.  The actual procedure involved inserting a small reservoir (the size of an M&M) with a catheter on the end of it on her head right beneath the surface of the skin, leaving a small visible bump.  After the procedure, they successfully used the reservoir to extract 15 mL of yellowish fluid - the cerebrospinal fluid with the leftover blood in it.  That's about equivalent to a tablespoon.  They can now use the reservoir to tap out some fluid every few days.  Almost immediately after the surgery, Avery's oxygen needs from the ventilator were dropped significantly from around 40% down to a more stable 30%.  She was put under with general anesthesia, so she spent the rest of the day basically relaxing.  At the end of the day, Dr. O'Riordan talked with a thoracic surgeon and it sounds like Avery may be getting another surgery tomorrow.  This would be a surgery on her heart with a ligation to resolve her heart murmur.  The surgery involves making an incision on the back left side between ribs, moving the lungs out of the way with a tool, and getting a certain angle at the heart to apply a metal clip to closes the duct.  It sounds like recovery from that surgery is more significant than from what she got today, so we hope that it goes well tomorrow.  That will happen around noon.

This was a welcome sight in the afternoon.  The nurses are awesome and insisted on bringing the sisters back together, so they brought them back to the same room for a sleepover tonight.



Wren continues to stay level with her lungs and trying her best to recover from her infection.  We met an infection specialist today, and both him and Dr. O'Riordan do not feel yet that there's necessarily a fungal infection, though they're not yet sure what may cause the discharge on her skin underneath the tape.  It's possible that her skin is just reacting a small amount to the tape or the adhesive on the tape. I held her today and watched as her levels continue to rhythmically drop every few minutes and then come back.  I hope that her lungs can begin to heal, but it will take time.  For now, we just continue to hope that she does not have another crash.  She may end up needing to spend a lot of time on her right side for several weeks to keep the lung pressed down.  This could potentially cause some issues with her organs and things always moving that way, but she does get moved around every time they do "cares".  Her oxygen remains around 60% which is fairly high.

Both girls are taking a bit more food each day as they continue to stand it.  They still don't take much -- they both take around 7 - 10 mL per feeding, where according to their current weight they could handle more like 18 mL.  Weight-wise they are doing pretty well - they both weight about 2 lb 4 oz (hurray for two pounders!)

Day 23

We met with the neurologist this morning to discuss Avery.  He walked us again through her head ultrasounds, and talked about the implications of the damage she has and the size of the hydrocephalus.  It was certainly not a cheerful conversation, and I think he couldn't quite completely understand our choice to move forward with treating her condition, but we just felt like it's the right thing for her to do, right now.  It seems like at this point we are just going on what we feel is right on a daily basis, not knowing the end result other than what we can hope for.  Avery will have her first surgery procedure tomorrow morning, and the doctor will insert a small reservoir just below the surface of the skin and some tubing for fluid to drain out of the ventricle.  The idea is once the reservoir is installed, I think they can regularly extract fluid out of it by pulling it out with a needle.  This is a short-term solution, but it could get her closer to potential long-term solutions a little further down the road once she is bigger and a bit stronger.

Wren had another day of ups and downs. The staff noticed a bit more of the indications of infection on her arm, but none of the cultures drawn have confirmed whether it is fungal or bacterial as yet.  She spent some time on her stomach and really loved it, but she has gotten pretty sensitive to touch, so when I tried to contain her today she did not care for it and started desaturating a lot.  She still lets me read to her, so hey, I'll take it.

Both girls still have prominent PDAs and are not yet taking a lot of food or working toward getting off the ventilator.

Day 22

Today we let our doctor know that we'd like to pursue treatment for Avery's hydrocephalus.  The neurologist will evaluate how things look and determine the best action plan for later this week.  Meanwhile, her heart rate keeps dropping to really low levels and then moving back.  When this happens, this nurses watch her closely and help her to recover, but it seems to be a symptom that she's not going to be stable any time soon.

Wren's lungs still look bad, but for another day, they didn't get worse.  Where just on Sunday we were afraid we might lose her by today, it has not yet happened and in fact there's still a chance she can get past the issues if she can just maintain her levels enough to grow bigger and begin growing some additional healthy lung cells.  However, there may be another setback for her -- while uncovering the tape wrapping her PIC line in, they discovered today a small amount of what looked like pus, indication of an infection.  This would be really strange since she's currently on antibiotics that should cover most kinds of bacteria, so there is potential that she may have a fungal infection now.  The last thing she needs is another problem, but this girl has shown us that she's strong enough as a 1-pounder to fight through some heavy stuff, so hopefully with the new anti-fungal treatment she is getting in case she does have a new infection, she will be able to fight it off.

Three Weeks

Monday, August 22, 2016

Avery last night had her first confirmed seizure last night during the night rounds.  Several staff members observed and confirmed that's what they were seeing.  It lasted about ten minutes, and they then medicated her with phenobarbital to help provide relief.  Since then she has been relaxed and had a pretty good day.  This is most likely just the beginning manifestation of the effects of hydrocephalus on her.  Our neonatologist would like us to make a decision by tomorrow or so on how to manage this.  Her best chance is to likely put in a shunt, but as was in Wren's case, it's difficult to predict in an infant so small whether the procedure can be successful.  While I held her today, she was doing really well with a nice relaxed heart rate, low CO2 levels, and good saturation levels.  She also still has a PDA that needs to be dealt with, and the Tylenol has not yet made a noticeable difference, but it also hasn't been harmful and they'll continue to order it for a few more days.  Side note, in the above picture, Avery has little cloth over her face.  They call these cuddle cloths - small cloths that you can take home and wear under your shirt or sleep with on your pillow that carry your smell.  You later bring these in and they'll put them with the babies who have even at this point a strong sense of smell. They can be comforted some just by having our smell near, especially their mom's.

Wren's condition with her lungs has stayed roughly the same since yesterday.  While she is not getting any better, she's also not as quickly approaching a decline as she was two days ago when we first spoke with the pulmonologist.  She also has her own PDA to deal with.  In addition, both of these girls are now on three weeks of being supported by ventilators, which is not great.  Typically, they want babies to be able to wean off the ventilators as soon as possible, but as late as two weeks.  The longer they stay on the support, the more it could potentially mean for them in the long run.  As a side note, there is a small leak in Wren's air tube, which is pretty normal, but the effect of it is a causes a tiny little burst of air to pass through her vocal cords and then makes a tiny squeak-like sound in her voice.  I've got some good video recordings of it.  It may be indirect, but it is a blessing to get to hear our daughter's voice.

It does seem like the cards are stacked against our girls, but I choose to hold on to faith and come what may.

Day 20

We had a great Sunday with our girls today, thanks to my sister in law for watching our kids most of the day.  Shannon got to hold Avery and I got to hold Wren at the same time, and they both did great.  My sister Season showed up and was able to visit with us.  It looks like Wren had her first good news of the week -- this morning's x-rays showed that her left lung was getting a bit more oxygenated than the previous shots showed, and that the damage in her lungs hasn't spread any further since yesterday.  That tiny little piece of good news seemed huge to us, so we choose to hold on to it and continue to hope and have faith that things could go well for her.    Really though, we know that at this points she is completely in God's hands.  Wren also has been on a helium-oxygen mixture mixed in with her normal air to see if it would help.  It did not appear to, so they turned that off today.

Avery did pretty well today, and has kind of started digesting the food she's given again, and that's a good sign.  She is scheduled for another echo tomorrow morning to see whether the Tylenol is helping with her PDA, and at the same time they will check her blood to ensure the drug is not causing problems for her liver.  She seemed a little more uncomfortable than usual today.  They are worried that she might become resistant to the effects of Morphine, so they started her on a new drug whose name I don't remember.

All of this treatment for these babies is a continuous, delicate balancing game.  It requires a lot of back and forth with slow trends in up and down directions.  The doctors and nurses make constant changes to settings on her ventilator and IV equipment, changes in how they're facing, changes in how much they eat, changes to medicine doses they receive.  All of this happens to try to make sure that the baby gets to a more stable state when they can focus simply on feeding and growing to the point where they can "graduate" and leave the NICU.  We look forward to that day.

Day 19

Saturday, August 20, 2016

I'd rather not write today, but I think it's important for me to do so.  This morning Shannon stayed home, worried she was feeling sick, and I came in to meet a neurologist and talk about what Avery is facing.  Her hydrocephalus is becoming a bit more advanced and pretty worrisome, and a point is coming up soon to decide what to do next with her.  Technically we have an option to have them surgically insert a shunt to drain the fluids as would be done on a larger child with the same condition, but the problem with premature babies is that it is so difficult for them to heal from surgeries that significant, and living with a shunt is going to require a lot of permanent maintenance including procedures and surgeries.  It feels like the odds are really stacked against poor Avery, but she still looks so amazingly perfect to us.  The doctors feel like we should make a decision on what to do next with her within the week most likely.

For Wren, today was one of those days that you dread facing as a parent.  This caught us off guard.  We have known that the results of the infection she had were pretty hard on the lung tissue of her right lung, but they have observed the last three days through x-rays an accelerating condition of damage with the blebs in the lungs that look to be drawing most of the airflow from the ventilator and collapsing parts of the lungs or just making the lungs overall less effective.  The end result was after today's observation, Doctor Merchant gave us a call late in the day to let us know it was time to make a decision on what to do for her.  There was not a recommended path, since the options all carry a great deal of risk.  When we came in and met with Doctor Merchant (the neonatologist) and the pulmonologist as well, it became clear that the options boiled down (1) trying to insert a camera scope to get the tube into the left lung, which requires them to hit a difficult angle and requires them to insert a larger breathing tube that would fit the camera, and (2) do nothing and wait for her condition to worsen until it most likely proves fatal for her.  The pulmonologist said that by his best guess, if it continues at this rate she may have two days or so to live.  The procedure may have been her best chance at survival, but was very unlikely to be successful, and has a high chance of causing damage in the airways that would quickly be fatal.  Even if they were successfully able to get the tube into the left lung (so that the right one isn't inflated and has time to heal), they're not certain that this would provide enough oxygen to continue sustaining her body.  In short, it kind of felt like making a decision between two different ways that could very likely lead to her passing.

In the end, after consulting with the doctors and talking alone for a while, we decided to forego the procedure, worrying that it might be too aggressive, and to wait and see what happens.  I still have faith that things could somehow turn around for her, but even after having been a religiously faithful person my whole life, it is certainly difficult to not prepare for the worst.  Over the next few days, we will plan to spend as much time as we can with her.

Day 18

Avery started taking Tylenol today.  She'll take it every six hours and will be monitored to see if her PDA goes away.  Shannon and I are meeting with the neurologist tomorrow to talk about the condition of her brain from the last scans and what they'll need to look at going forward.  I think the big concern will be whether she ends up with hydrocephalus, because operating to get a shunt in to remove fluids would be a really big deal.  She is still doing well for now, though, and pretty stable.  In fact, she was on the lowest ever oxygen I'd ever seen her on today at 24%, getting ever closer to that eventual 21% target.

Wren is still on high oxygen needs following the infection in her lungs, and it's not clear yet whether she's going to get past that.  Her needs fluctuate between 50 - 70%.  One of the doctors talked a bit about pulling her breathing tube back and then trying to insert it into the healthiest lung in order to avoid causing problems in her lung with the damaged tissue, but they're not sure whether she will be able to stabilize with a ventilator just on one lung.  She seemed pretty calm today when I was in talking and reading to her.  I've been worried about her state with her lungs, so Tony and I gave her an additional blessing tonight.  Once again, I felt reassurance that these girls are being watched over.

Day 17

8/18/16

It looks like although Wren is still getting steadily better, the pneumonia in her lungs has left a good amount of dead lung tissue in areas the doctor called blebs.  These basically leave empty spaces that air can enter as it follows the path of least resistance as it comes in the lungs, and can cause bulges and consequently damage to surrounding tissue.  It also may make it harder for her to breathe on the ventilator, and I understand that she will have permanent damage from the infection as well.  We're not sure what that means exactly yet other than it's likely that when she comes home with us she might need to have oxygen treatment for some time.  She finally got to eat some more food today, which is good.  It looks like the infection in her blood at least has cleared out at the moment, which is good, because they are running out of space to give her IVs, and needed to insert another PIC line, which they wait to do until they are comfortable that the infection is clear from the blood.  When the infection first hit and caused a septic situation where her blood pressure dropped fairly dramatically, it looks like she had a shortage of oxygen to the brain for a bit of time, which may have caused some damage.  They think she may have seized yesterday, but it's really not clear.  I'm probably painting a bleak picture here, I think that all things considered she is on the way back up.

Avery continues to show progress as well.  They still are not sure whether she has an infection, but it did appear that she at least was growing bacteria from the same family as what Wren had in the breathing tube.  All tubing has of course been replaced so they can ensure they're not reinfecting with the medical equipment.  She has kept growing about an ounce a day or a little less, and has also been taking a tiny amount of food.  The immediate challenge she is facing is that her PDA (heart murmur) is somewhat loud and could start causing her problems.  The neoprofin hasn't done anything for her yet just like it didn't for Wren.  Before they resolve it with a ligation surgery, though, the doctor today is recommending that we try her on one separate drug first.  Apparently there has been some amount of studying done recently with using oral Tylenol to treat premies with PDAs, and what the research shows is something like 50% of babies like ours are able to close the duct all the way or at least enough of the way to resolve symptoms after using the drug.  Wren will likely be able to get that as well provided she gets feeling good enough to take on a new drug in the next day or two.

Day 16

Avery remains on her upward path and continues to become seemingly more alert.  Shannon got to hold her for the second time today.  The nurses did, however, discover that she had some bacteria growing from a sample from her breathing tube.  They're not sure if she's ending up with an infection like Wren did, but as a precaution they're starting her on antibiotics ahead of it.

Wren is still trying to beat off some of the adverse symptoms of her infection.  Unfortunately, there was some time yesterday when one of her IV tubes was disconnected, and she wasn't receiving the fluid and medicine she was supposed to get.  That's been corrected.

  As soon as both girls are up for it, the doctors are likely going to choose to operate on their heart murmurs.  Meanwhile, two of our kids at home started with runny noses today and were making us really nervous.  If Shannon or I get sick, we may not get to see the girls for several days, which would be really hard.  We've already gotten used to seeing and talking to those two little beauties every day.

Day 15

A bit of more bad news for Wren today.  First that poor girl had a staph. aureus infection for pneumonia in her lungs that spread to her blood, and today we learned that she has also been found to have a brain hemorrhage.  Hers is not as bad as Avery's -- it's only a stage 2 bleed, which means that blood is seeping into the ventricles the brain, but not directly into the brain matter itself.  There may have been some level of brain damage as a result, or it may have been pretty minimal, it's unclear at this point. The doctor thinks that the bleeding may have started when she started fighting the infection and subsequently was low on oxygen, but he thinks it's more likely that it's just that it occurred soon after her last head ultrasound around day 5 or so. She is still on antibiotics and dopamine, but in terms of symptoms, she's actually doing a bit better than she was yesterday still.  We remain hopeful that she will get back to good.

Avery was very active and awake today while we were there.  She is still growing somewhat and only getting a tiny amount of food, but seems to be doing pretty good despite taking the neoprofin.  It's not clear if the drug has made a difference for her either, so we may end up needing both girls to have a surgery to take care of that once they are both feeling a bit better.  Avery opened her eyes up wider than I've ever seen today.  Also, she tolerated eating food today and actually digested it for the first time.  That's a great step for her!

We love our babies.  It makes me feel great to hear my kids talk about their baby sisters and to say perfect little prayers for them, like when Penny asks God for "Wen" to fight her sickness and for "Avewy's" brain to stop bleeding.  Like our kids, we trust in God that things will work out for them according to his plan and in his time.  While we don't yet know what that will mean for their future, we will hold out hope that the very best can and will occur, and will take whatever comes.

Day 14

Two weeks down.  To me, it feels like a longer time should have passed.

Avery is taking her next treatment of neoprofin today, so she is off food again.  They are watching her closely, since last time she got the drug her kidney started shutting off and stopped producing urine.  She seems to be doing really well today, though.  She always seems to react really positively to talking when we go in.

Wren still has an infection, and apparently it's now present in her blood as well.  She has had a few treatments of antibiotic now as well as continued Nitrous Oxide gas to stimulate the lungs.  Today she was looking and acting quite a bit better.  Her heart rate dropped to the 170s, blood pressure got up to around 38 (the target being 45-50) and her oxygen needs went down to 50% from 70% yesterday.

Day 13

Avery is still loving the swaddle and has had a fairly stable couple of days.  She is not doing neoprofin at the moment and they are slowly reintroducing food to her daily schedule, but they did need to use dopamine to help her kidneys produce urine.  When I read to her today, the nurses watched her oxygen saturation numbers get up strong enough to where they actually needed to wean off her oxygen a bit.  I love hearing that - I discussed it with a brother in law earlier and realized it's the only form of parenting I do that has quantifiable results!

Wren had a pretty hard night last night.  She started to take a turn for the worse when her blood pressure started to drop to the level where it was no longer detectable by the equipment, and her heart rate went up to compensate.  She also stopped peeing last night, so they suspected she may have an infection somewhere.  We were warned that infections can potentially be devastating, so of course they watch this stuff really closely.  The nurses got a swab from her mouth, some from her tubing that goes into her lungs, and started her on a dopamine to try and help get her to urinate to take a sample of that as well.  It surprisingly didn't take too long for the people in the lab to observe a growing bacteria culture, confirming an infection in her lungs.  Her body seemed to be trying to fight the infection which helps account for the adverse symptoms the nurses had been struggling with.  The doctor recommended giving her a treatment of Nitrous Oxide gas in the lungs.  This doesn't fight the infection, they'll give antibiotics for that, it just helps enlarge the blood vessels around the lining of the lungs to make oxygen transfer easier and help her lungs to be slightly more effective during the course of the infection.  By the afternoon, she started to stabilize a bit, and by the evening when she was receiving the NO gas, her saturation levels improved further, though she's still on a pretty high oxygen level of 65%.  That's up a lot from her level of 30% a couple of days ago.  The goal on oxygen is to move toward 21%, which is the same oxygen level as the air we breathe.

Here is a sample of (some) of the equipment Wren is hooked up to.  There's an IV to the left and system monitors, and on the right side of the isolette the ventilator machine she's currently on, the NO equipment, a humidity machine and other stuff to monitor respiratory levels:


Clean
It can be a bit scary to have a 1 pound baby with an infection.  Whenever you come to visit your baby in the NICU, you go through a process where you check in and then spend a couple of minutes thoroughly soap scrubbing your hands and arms up to your elbows.  After a couple of minutes you head into the room, but if you touch anything else with your hands like your phone you need to apply some hand sanitizer prior to opening an isolate to touch one of the babies.  Even despite all the precautions it sounds like it's somewhat common for micro-premies to get infections.  With the care required to keep our bodies clean and sickness free, I can't help but think that there's a great spiritual analogy here.

Day 12

Saturday, August 13

Wren's doctors consulted and decided that they weren't ready to recommend heart surgery for her PDA (murmur) yet.  It is causing issues for her, but they'd like to give her another round of neoprofin before they decide to do surgery.  We hope that the issue resolves itself quickly so that she can get back to eating food and growing.  Wren is also back on phototherapy today after being off it for a few.  It's not surprising that so many things in the body have difficulty becoming regulated in a 26 week baby, after all she wasn't supposed to be fully ready for another 10 weeks or so, and we are basically trying to kick start all of her body systems that would otherwise be basically nonfunctional at this point like the digestive system.

Avery's heart murmur is being watched and she is now on her first round of neoprofin, so between her stomach issues last week and the medicine treatment now which slows blood to her gut, she won't be getting food for a while either.  Avery finally got off phototherapy for the first time today and was swaddled.  Like her sister, she was loving it and was incredibly relaxed.  She did keep peeking her eyes open at us while we talked to her today which was nice.  I am told that the blood in her brain has likely done the bulk of its damage by this point.  Another head ultrasound will be done for her tomorrow to ensure that things haven't gotten worse or changed in any other ways.  The big things they will be watching for are whether the bleeding turns into a stage 4 on her left hemisphere where it was a 3, and whether she is showing any signs of hydrocephalus.  That last one would be pretty scary, it would mean that there's fluid building up in her brain that is potentially not moving like it should due to the blood, and would potentially need to be treated with a surgically inserted shunt that could physically get fluid removed before she would start to have any other adverse symptoms.

I don't know what else to write today, other than thanks to everyone out there for being there for us.  You people are legit.

Day 11

Wren's heart murmur has not gone away with neoprofin treatments.  It sounds like it has actually stayed the same.  The Doctor on shift today said that he would consult with the other doctors first, but it is likely they are going to recommend she get surgery for it.  I think the surgery is pretty minor, but we're still a little nervous about that happening since she's so tiny.  Wren was really opening her eyes up today and paying attention to Shannon.  She still loves being swaddled and hates having her diaper changed.


Avery was also confirmed to have a fairly bad heart murmur.  If she's like her sister, then taking the neoprofin may not help in which case she would end up needing surgery as well.   They'll start her on the medicine first though, just in case.  On the positive side, she may be able to get off phototherapy tomorrow if her bilirubin levels stay linear as they are right now.

Avery let me hold her hand today.  Her hand is still so small that it won't fit all the way around your finger, but it's awesome.  I know it's just reflexive, but hey, I think she likes me.

Day 10

Avery today decided it was time to get her eyes open and get a look at all the people who are working and talking around her all the time.  Shannon was there when she opened them, and got this quick picture before she closed them again:



You can also see in this picture a bit, her stomach is sticking out still since she's still having trouble digesting.  She had a pretty good day today and might try to eat food again tomorrow.

Wren finished another round of phototherapy and was able to get back into a swaddle, which she really loves.

As soon as she gets swaddled, she will hang out and be relaxed for the rest of the day.  She gets agitated every time the nurses do "cares", which is when they change their diapers, give them food, and do other treatment.  She'd rather just get beauty sleep all day.  In order to more closely imitate the womb, once the babies don't need phototherapy, the isolette can be covered with a blanket most of the day to keep it nice and dark.

Wren's heart murmur hasn't let up yet, and after an echocardiogram, it was unsure if maybe Avery had one too.

Day 9

Wren - her heart murmur hasn't let up yet.  She's receiving more doses of neoprofin today and tomorrow to see if it resolves itself.  Big news - she opened up her left eye today and peeked around.  I'll try and get a picture.

Avery - had a firm stomach today with bile, she just can't seem to get her digestive system moving well.  The doctors decided to give her a break from food for today and maybe tomorrow to let her rest, and by the end of the day her stomach started to soften.  She cracked open an eye today also, but in true twin sister fashion she insisted on being different, so she opened the right one.

The Hall

Walking into the NICU, there is a long hallway called the Hall of Hope.  It's got a bunch of pictures of kids who were in the NICU and are now older as a before/after picture.  This was a brilliant design choice for this hallway, since it's where parents are nervously walking in to check on their babies and wondering if they're going to be ok.  We had the privilege to meet the parents of twins born a few years ago; these parents took time out of their day on Sunday to come meet us and talk about their experience and let us ask them some questions.  They were in a situation where both babies had brain hemorrhages, and one made it through while the other didn't.  While I know this must have been a deeply painful experience for them, I felt that their family is full of love, hope and faith in God.  While I don't think those things make anything "easy" in themselves, but I do know that we can find strength in faith, regardless of our situation.

  Their daughter made a awesome little get-well card for the babies also which we hung up on the wall in the nursery with the pictures our kids made for Wren and Avery.

Day 8

It was great to see the twins today.  I continue to be nervous that Avery might sometime experience seizures or other symptoms from brain damage and watching for signs of it happening.  So far she has not done so, but today she seemed fussy and a bit jerky, but the nurses assured me that she was doing ok.  It would actually be difficult to tell if she did seize, because her little nervous system is so immature.  All things considered though, Avery is doing well.  She started eating 2 mL of food up from 1.5, so it seems that her digestive system may finally be starting to work.

Wren had a pretty good day as well.  One negative point for the day for her was she received an echocardiagram to follow up on the heart murmur that she had the other day.  The heart murmur did not resolve itself and she was found to still have  a PDA (patent ductus arterioles, just had to look that up).  As I understand it, it means that a flap on her heart is staying open and not closing like it should.  As a result, the nurses will be administering a drug like ibuprofen for a few days and will scale back her food since the drug will reduce blood flow to her stomach.

Two Places

One thing I think both Shannon and I have noticed with me going back to work is that it's becoming increasingly difficult to find a balance between the things we need to do, our babies in the hospital, and our kids at home.  We have a lot of amazing family who sacrifice a lot to help us with the kids and to allow us to spend time at the hospital, but still I find myself feeling like I need to be two places at once.  I was holding Wren tonight and spending time with her, but it ended up taking  a few hours, and for the second night in a row I missed seeing my kids at home before they went to bed.  I'm not sure yet how to spend time that the babies need while also being there for our other kids who are experiencing this time of change alongside us.

First Week of Life

Hey.

I am writing this on conclusion of the first week of life after birth for Avery and Wren, our awesome little premature twin girls.  Rewinding a little, it was only about seven weeks ago that we learned (a) that our single baby we were going to have was in fact two babies, (b) that they were a high risk type of identical twins called Mono-Mono (mono chorionic, mono amniotic with a single amniotic sac),  and (c) that Shannon would need to be hospitalized starting around week 24 of pregnancy to receive regular monitoring.  That last one is thanks to the fact that these mono-mono babies shared the same space with no membrane between them -- as a result, they had the ability to twist and compress one another's umbilical cords, thus potentially cutting off circulation.

Well.
It turns out they were pretty good at twisting the cords.  Shannon was supposed to stay in the hospital, bored out of her mind and being monitored every few hours until a target date of week 32-34 (late September), when the doctors would perform a C-section to deliver the babies.  What actually happened, though, was that on a week ago today, on July 31st, the medical staff began noticing a fairly regular drop in heart rate of one of the babies we called "Baby B" at that point.  They decided to put her on continuous monitoring, and saw that the heart rate drops were falling to about 80 beats (from around 150) with some regularity.  They started to show signs of improvement through the day, so we didn't worry about it.  However, the next day the signs got worse.  At one point, Baby B's heart rate started to steadily decline down to and below 60 and was looking dangerous.  Our doctor ordered immediate action.  Shannon was rushed to the operation room, immediately administered general anesthesia, and operated on.  Meanwhile, I was of course unwittingly working away at my job when I received the phone call. By the time I got to the hospital, of course, it was already past delivery -- it only took them about six minutes to do the whole thing.  I walked with my babies immediately over to the intensive care unit and remember hearing a lot of stuff about what was going on (that I don't remember) and a lot of medical talk that sounded like another language to me.  After delivery the doctor confirmed what had happened -- the two umbilical cords had done a long twist, a solid knot (which the doctor mentioned looked like fisherman's knots, I remember), another twist, and another big knot.  The weird part of me wished he had snapped a photo.

When Shannon came to, I talked to her and try to reassure her that the babies were doing well, but she was of course pretty out of it due to the heavy anesthesia.  That evening, my brother Tony and I were able to give priesthood blessings to Avery, Wren, and Shannon, all while trying to take in everything that was going on.

That brings us to Day 1.

Meet our lovely ladies; Wren (right) at 11.75" and just over 1.5 lbs, and Avery (le at 12" and just under 1.5 lbs.  The medical providers knew right away that Wren had had a pretty good start as far as 25 week babies go, and that Avery had had a "rough start".  I didn't quite know what that meant, but the doctor explained to us some of the risks involved with babies who have been low on blood and consequently oxygen.  He explained that one of the principal risks is that the brain can be susceptible to bleeding, which carries with it a huge amount of risk due to the potential for brain damage.  This day was a rush, but at this point I for one was feeling that our babies were going to be ok and were in exceptionally good hands, especially after meeting the Nurses working with our babies in the NICU and the other staff such as respiratory therapists, Nurse Practioners, and zillions of others.  I have an image in my mind of the babies in a quiet room, both in isolettes on opposite sides of the room, with 2-3 staff actively working on them through most of the entire day, getting them hooked up to monitors to check their heart rate, breathing, O2 and CO2 levels in the blood, breathing tubes, feedings tubes, tubes everywhere, and a nurse with a small manual pump moving up and down.  It only struck me later -- that person is keeping my baby alive right now.  We got little sleep that night.

Day 2

We started to get a better feel for the condition of the babies.  Both were in need of a lot of drug treatment, special ventilators for breathing, photo therapy, and various other things.  A head ultrasound was performed on both in the morning to monitor for whether brain bleeding had occurred.  While Shannon was resting in her recovery room, I went to the NICU yet again to check on the status and see if they learned anything from the ultrasound.  Rather than let me know, the Doctor on shift at the time told me he'd meet me and my wife together in our room to give us an "update".  When your doctor wants to have a sit down chat with you in a quiet place, you know you're not looking forward to the conversation.  Well, sure enough, he came to let us know that they identified a hemorrhage in Avery's brain.  They measure these on a scale of 1 - 4 with 1 being pretty minimal bleeding and 4 being extensive, going into the actual brain tissue.  He kept going up the list, explaining what the numbers meant, and meanwhile I kept wondering, 'why hasn't he stopped yet?  Why is he now explaining a 3 if she's a 2?  Why is he now explaining a 4 if she's a 3?'  He then told us that Avery was observed to have a level 4 bleed on the right hemisphere of her brain, and a level 3 of her left.  The doctor pulled no punches, telling us exactly what this could mean for her.  As the body begins to clear out the blood, some of the brain tissue -- if not large portions of it -- could be basically destroyed and effectively dissolved, leaving devastating damage.  We don't and can't know exactly what this translates to at this point, but he explained the range of possibilities could include a lot of things on the table -- for example, whether she'll be blind, have the ability to move her muscles, be able to eat on her own, and any other potential risks from significant brain damage.  He warned that she might experience siezures in the coming days, and that depending on how she does, we would need to make decisions about her care...which I took to mean whether she would be kept on life support depending on whether her situation got bad.  After learning about this last detail, I couldn't handle the thought and sort of just broke down.  After the doctor left and I was left to talk with Shannon about what this meant for our baby, for the kind of life she could have, and for out own, I was struck with how calm she was about the whole process.

Day 3
After dealing with our fears about Avery's brain hemorrhage, I was in a much better place emotionally in the morning.  After talking a lot about it with Shannon, I came to know that there is some kind of delicate balance between faith in the future and understanding in the present.  While it was still too early to have any idea of what could happen for her, we know we can remain optimistic and have faith that a miracle can occur for her, all the while understanding that she may not be able to have the life we would hope for her and still know that God's hand is over us all.  Our optimism took a hit though, when on this afternoon Avery suddenly had a fairly significant bleeding inside her lungs.  At this point, she needed another blood transfusion.  I felt the need to give her an additional Priesthood blessing and did so alongside my brother Tony again.  After this, she began to stabilize once again, and we were again feeling hopeful that things would start looking up.

Day 4
Finally, we had a day without any new problems being introduced.  Both Avery and Wren were fairly stable for a whole day, apart from the constant changes applied to their ventilators, and a second head ultrasound was down for Avery, and they found that the bleeding in her brain had not gotten any worse.

Day 5
The babies began being fed breastmilk on day 3 or 4, and began being more regular with it today, which is a really exciting thing, because it's the best form of nutrition and medicine that premature babies can receive.

Day 6
Today, Avery was found with another issue, the doctor on shift discovered a white area on the left side of lungs, which he confirmed to be a small pocket of air within the chest cavity.  They will watch that to make sure it doesn't cause any problems like getting bigger and beginning to physically push the lungs and other organs, but for now they don't think it's an issue.  My bishop met with me today in the NICU to give both girls a name and a blessing.  It was a great experience.

Day 7
Avery and Wren are a week old today, which makes it awesome that we were able to hold them and do skin-to-skin contact with them for the first time.  Wren had spent most of the day being fussy because she was taken out of her swaddle to get more photo therapy for high bilirubin levels, and when Shannon held her, she calmed down and just relaxed.  I got to hold Avery and hang out with her for a while as well.  It was a great experience.  I just sat there, feeling good, and reading books to her.  Wren started eating more food today, about 9 mL every 6 hours.  Avery is still only taking 1.5 mL as she has for the last several days, because her digestive system hasn't really seemed to kick on yet like Wren's has.





So. I would probably write more details or provide more pictures, but it's late, this is already long, and my mind is feeling fried.  This week, Shannon and I have felt overwhelmed by the amount of love, service, and support we have received on behalf of our babies.  I wish I could enumerate every act of service and every kindness, but I would fall short in the attempt.  Instead, I just feel grateful.  Grateful to people, grateful to our families, and especially grateful to God.  This week, I have learned that life -- all life -- is truly miraculous.  I have always known this, but seeing how fragile and tiny it can be, this truth was made somehow more sacred to me than it ever was before.  This kind of thing has the effect on me of really putting everything else in perspective.  We don't know what could change next week, but we already love these babies deeply, and know that our other kids do too.

A couple of observations: It was really  exciting to learn that we as parents could have a direct influence on the babies' progress during their 3-4+ months in the NICU.  The nurses explained that the babies know our voices well and have a good sense of hearing, and that talking to them can help soothe and comfort them.  In addition, just putting our hands inside the isolettes softly around their head and feet ("containment") is another great way to soothe them.  As the nurse explained this to me, she was able to observe on the machines that just from me talking to Wren and doing containment, her heart rate steadied a bit, and the oxygen saturation levels of her blood improved.  It was huge to realize that we are much more than passive observers in this process.

Secondly, the power of empathy is amazing.  We love to see how the nurses sincerely love our babies and want them to succeed like we do.  On a few occasions, I have seen nurses explaining something to me in a professional way while holding back tears.  They feel what we feel in a real way, and it is awesome to know the twins are in such good hands.

We'd also like to give a personal thanks to Brandy of Huckleberry Cloud Photography who came and did a shoot for us and our babies. She was very kind and did an awesome job and was very appreciated.