Saving Sam (Chapter 1.17): Hurry up and wait

As we entered the month of September, Elisa and I had a laundry list of things that we had to "get through" before the baby could arrive.  I remember feeling like we were running a constant race...hurry, hurry, hurry.  We got Lukas started in his Dual Immersion program.  We got Miles started in preschool.  I had to get through a very busy workweek with many important people flying into Salt Lake City for three days worth of meetings.  On top of that, Elisa was flying her best friend into town to be an important part of our birth story, and I had a house to clean.  Wouldn't you know that as we started to chip away at all of the things we needed to do, a cold hit the family.  It started with Lukas, moved to Miles, and before we knew it, Elisa and I were feeling lousy.  Really?  We had pushed to get everything done, just so we could get stopped in our tracks.  And trust me, we needed to.  We started envisioning a birth story with snot and Kleenex and I strongly considered trying to "misplace" the camcorder.

Isn't that how things go, though?  Hurry up, hurry up, hurry up.  And wait.  Today was one of those days.  Both where Sam decided to say "wait", and where Elisa and I, for the first time, pleaded for a little patience as well.  First, Sam.  When we started the day, he was at 0.6 lpm of oxygen.  I had grand thoughts in my head that he could actually be off the stuff by the evening.  Our 48-72 hour clock could get started.  Hurry up, Sam.  Hurry up.  Sam looked up and said, "wait!".  Apparently, the nurse on call made a single attempt to drop Sam's oxygen to 0.4 lpm.  He didn't like it, so the shelved the idea of weaning for the day.  Each day we'd go, the little ball in the oxygen control would be fluttering around 0.6 lpm.  Maybe I had even gotten sucked into the new Dr. Smith, full of confidence and promise and excitement at Sam's progress.  I'm so desperate to have him home with us, I didn't really step back and realize (how could I forget?) that I'm not in control of any of this.  Sam is going to do this on his own schedule, at his own time.  I only hope that the "wait!" continues to come from Sam, and not in the hesitance of a nurse or doctor to see how he does.  

Ironically, my learning of the "hurry up and wait" lesson was only half complete.  Because within the family, other factors were at work to make Elisa and I actually think..."can we have a little time?"  Don't worry.  We're not suddenly hoping that we get some extra nights of shuteye.  We aren't selfishly hoping that we can get through another season of Friends (our show of choice during the hard moments) before Sam overtakes the house.  No, another little monster (our Miles Monster) woke up today with a cold.  Hurry up, Sam.  Hurry up, Sam.  And please wait.  Elisa and I spent the majority of the day watching Miles, trying to ascertain how sick he was and our chances of picking it up as well.  We went into prevention mode, setting up contingency overnights with Grandma and Grandpa in case we need sick kids out of the house.  We ordered kid and adult doctor's masks from Amazon to be prepared if we have to walk around the house like we all have the Bird, Swine, or other animal flu.  Suddenly, where Elisa and I were wishing that Sam could be home with us 3 days ago, we were now filled with caution.  The last thing we'd want is to bring Sam home and have him get a cold.  Haven't we just spent the last 11 days trying to get Sam's heart and lungs healthy?  

The last 11 days have been some of the most difficult of my life.  I feel safe in saying that Elisa would probably agree.  Every day, we'd get up and want more progress.  One step closer to home.  Another sign that it was all going to be okay.  Amidst my frustration, today made me realize that Elisa and I had played the "hurry up, hurry up" piece of the play perfectly.  It was up to our kids to make us see that even in the most difficult situations, a bit of patience is sometimes the best medicine that we can receive.  

Tomorrow, we have assurances that Sam's echocardiogram scans will be sent and reviewed by a pediatric specialist.  Sam will face that last 0.6 lpm of oxygen, choosing to "kick the habit" or making us decide if we want to take oxygen home with us.  Miles will be on Day 2 of his cold, and Lukas will probably be on Day 1.  We'll get our cacophony of doctor masks from Amazon.  And we'll inch closer to the end of our first chapter of Sam's long story.  

Hurry up.  Hurry up.  And wait.  

Brad

Saving Sam (Chapter 1.16): We wait and CC

If you wanted proof that I didn't blog last night, all you'd need to do is look at my text message inbox.  I received a bunch of "how's Sam doing?" inquiries, which I love.  But I also know if I would have shaken the cobwebs out of my head at around 9:00pm last night, I could have kept the suspense at a minimum.  That's not to say that things haven't been happening.  On the contrary, Sam's been a little fighter in the last day. 

When our story was last updated, Sam was sitting at 1 LPM of oxygen on a secondary machine.  The goal was for him to tolerate the 1 LPM so that we could move to the less invasive, more manageable wall unit.  To explain, the machine can really handle oxygen well when you're delivering a lot of oxygen (1 LPM or more...I think the highest I saw was 4.0 LPM when we we have been in the NICU. The wall unit specializes in CCs.  This much less oxygen, and it allows Sam to adjust in smaller increments (from 1.0 LPM to 0.8, 0.6, etc.).  

Sam moved to the wall unit just after our 2:00pm feeding.  By the 5:00pm feeding, he was already getting adjusted down to 0.8/0.6 and was holding his own.  We had two nurses (one in the middle of the night and one this morning) state that he probably could stay above 90% saturation without the oxygen but that they wanted to continue to keep his saturations up above 95% as he continues to make progress breathing on his own.  

But that's not the best part of today's update.  No, that belongs to the sheer fear that the Lioness has put into our fair Dr. Smith.  You see, I haven't interacted with Dr. Smith since she delivered good echocardiogram news like it was 4 steps back.  I must admit that when I would see her (as she was around the rest of the NICU), I wouldn't have a kind reaction.  But that was pre-Lioness.  Elisa had effectively put a little fear (and maybe some self-doubt in her delivery mechanisms) into the Dr. and I was very curious to see if it would continue.  We had asked the nurse for a status update of "where are we going now?" at our 8:00am feeding, and sure enough, once we brought down the dividers that we use for privacy, Dr. Smith came on over.  

If Elisa acted like a lioness, sneaking through the grass, in their one-on-one encounter, this one felt more like Elisa sitting on Pride Rock, keeping an eye on her prey to make sure that she behaved.  And trust me, Dr. Smith behaved.  She was like a completely different doctor.  She gushed over Sam.  Said he was adorable.  Said he was smiley.  She was truly impressed with how quickly Sam had come off of the oxygen to this point.  Dr. Smith now believes that they will be able to wean him off of the oxygen at St. Mark's.  Once he is off oxygen, we begin the 48-72 hour waiting period.  She also stated that if he stalls, in a couple days, we can still take him home on a small amount of oxygen.  Regardless, the path forward is clear.  We believe that sometime in the coming week, little Sam will be coming home.  

Little did we know that the gushing news would come from Dr. Smith.  Then again, when you're being watched by a lioness, you try to be a little more careful, nice, and friendly.  And you realize that a positive outlook might just have some holistic benefits as well.  

After all, while she talked about his progress, little Sam, laying on Elisa's chest, smiled.  Clearly, the cub realizes what kind of lioness his mother is.  

Brad

Saving Sam (Chapter 1.15): Climbing up the wall

I sit back and try to imagine what it must be like to get Sam's updates in a blog.  I have fallen into a routine of writing blog updates twice a day, both to keep you informed and to keep me somewhat sane. I'm a processor - I need to receive news, process it, and then figure out what I'm going to do with the information.  This blog is allowing that to happen.  For anyone reading it, though, I imagine it's like watching a movie where you fast forward very quickly, watch a scene, and then push pause...waiting for the next chance to fast forward.

Sadly, that's not the process for Elisa and me.  The sheer pace of Sam's healing is painfully slow.  We measure progress in 3-hour increments, which doesn't allow for a lot of progress.  I know that the course of 10 days and a bunch of mini steps are amounting to great progress, but when you go and see him and the progress feels less than it should (or you can't even quantify what real progress should be), it is a disheartening drive home.  The next three hours feel a little more dark, gray, lonely.  And you gear yourself up for the next sign of progress, hoping it's a bit more than the last time.  Hoping you could actually measure this progress on the great map Sam's following to come home to us.

On Monday, it seemed so clear.  5 little steps.  And the last one was the physical act of bringing Sam home.  That was Monday.  6 days have passed since then.  And we're still only two milestones into the four.  On the outside, you're probably scoffing.  2/5?  You're more than 40% of the way there!  Take away the last step, and you've crested the hill and are on the downward slope.  The problem is that our point of view changes with each visit.  While it might be a leap from one blog post to another that he's now marching towards the next milepost, for us, we see that he "only" dropped his oxygen by 2%.  Or that it raised by 1%.  Or that he's still not on the wall unit.  Progress for us is simply a perception of how much farther we are now than we were 3 little hours ago.

Meanwhile, it feels like the tension builds at a much higher pace.  Sometimes, I think I'm going crazy.  I fail to see that we're making progress.  I become frustrated that we haven't been given a specific date of release.  Other days, I have more clarity.  I see small steps as inches that will turn into feet...which will eventually turn into the last mile home.  Today, it feels like inches are coming.  But instead of 12 inches in a foot, there's 38.  And don't get me started on how many feet are in that final mile.

That's not to say that there isn't progress.  While things really calmed down overnight (the only marked change was that Sam's oxygen was kicked up by 1% to 28), the Respiratory Therapist made a new push for Sam's oxygen weaning.  He's now down to 1 lpm (liter per minute).  In an effort to help him tolerate the reduced pressure, they kicked his oxygen levels back up to 38%.  But he's at the cusp of showing toleration that allows him to move from an oxygen machine to the oxygen on the wall.  When we were talking to the nurse today, she stated that weaning on oxygen is almost the exact opposite experience of weaning Nitrous.  Whereas you're dropping parts per minute of Nitrous at an alarming pace early on (Sam went from 20 to 5 in the manner of 12 hours), the hardest part is to wean off of the last 5 ppm.  Our nurse said that once he tolerates 1 lpm, the movement down is much easier.  It's an easier progression for Sam to go from 1.0 to .8, .6, etc. than it has been for him to go from 2 lpm to 1.

If the story ended there, I could measure the inches, know we were getting closer to another foot, and be okay.  But that was our 8:00am feeding.  At our 11:00am feeding, our only known progress was that we dropped from 38% to 36% oxygen.  And now we're watching Sam's respiratory rate to make sure that it stays consistently below 60.  Honestly, the worst thing you can do to us is give us a number that we're hoping for on a monitor.  We don't see every time he's under that number.  We see, count, and worry about every time/second/minute/etc. that Sam is above the desired number.  The nurse wants to see Sam tolerate 1 lpm of oxygen for the next few hours before moving him to a wall unit.  If that takes place, she doesn't expect any more movement today...unless he's making progress.  Then we could hit .8 lpm.  Maybe.  Hopefully.  But probably not.  But we could.

As we seem to be adding the inches up to reach the oxygen wall unit, in the process I feel myself climbing up the proverbial wall with frustration and a general lack of patience.  One day soon, we'll go in and be told that we're simply making sure he holds his stuff together before we can go home.  Soon, we'll be bringing the car seat in and will realize that home life is about to get a bit more crazy.  For now, I climb up the wall while Sam approaches it.  And I hope that I can keep my sanity in check while we wait.

And wait.

And wait.

Brad

Saving Sam (Chapter 1.14): Beware the lioness

When we last left Sam's story, Elisa and I were reeling a bit from the lack of clear update from our newest neonatologist.  It was maddening enough that I picked up the phone and left a message for our pediatrician.  At the very least, he's on the Board of St. Mark's Pediatrics, so I figure he knows the players of the group or can tell me that I should just sit down and take my proverbial medicine.  We love our pediatrician.  He's down to Earth.  He desperately cares about our kids.  He gave us his cell number on Lukas' first visit...and we've used it.  You know, when Lukas indented his forehead on the window box of our old house, you're kind of glad that a particular cell phone number is in your possession.

When he called me back, I vented.  I expressed my frustration that our first doctor had said 40/50 would be normal, but Dr. Smith said we weren't there yet.  I was upset that we had moved from a clear direction to "an atypical kid that we need to see what happens."  I asked him how you could get Sam off of oxygen for 72 hours and then give him some for home.  Mostly, I think he listened.  But then, when he talked, he gave us a couple of needed points of clarity.

1. Dr. Pete knew of Dr. Smith.  This didn't really surprise me, considering how involved Pete is with St. Mark's.  But he related his initial experiences with her as a parent.  They had a kid in NICU for 9 weeks and part of that time, their Dr. was Dr. Smith.  When I shared my experience, Dr. Pete laughed.  He let me know that Dr. Smith was of the "under promise and fill the glass half full" variety.  She never showed enthusiasm about progress.  She never celebrated potential small victories.  She told you what she thought you needed to know and she painted with a slightly harsh brush.  
2. He had been following Sam's progress each morning with interest.  And while he was very pleased with Sam's progress, he was still confused as to why this happened in the first place.  He stated that he'd expect this if there as a structural problem with Sam's heart (the echocardiograms have shown that isn't the case.  He'd expect it if there had been medical/medicinal interventions during the pregnancy (there weren't).  He was so confused by Sam's condition and he thought we should put time, effort, and energy into trying to understand that.  He gave us some pointers on how to tackle the issue, so that we didn't bring Sam home, worried that he was a ticking time bomb to a bigger, undiagnosed issue.  

Dr. Pete calmed me.  He made me realize that my initial feelings were right...it was all about Dr. Smith's bedside manner.  Dr. Pete had a slightly different effect on Elisa.  Somewhere, "The Lion Sleeps Tonight" was stirring inside of her.  Momma lioness was getting ready to attack. Would she jump out and roar?  Oh no...she's a hunter.  She gets you by sneaking through the grass until she's right on top of you and you're very unprepared.  

At the 5:00pm feeding, Elisa went in alone while I took care of the kids.  As she signed in at the desk, she couldn't help but notice that Dr. Smith was sitting nearby.  The lioness bent slowly down and hid in the grass.  She asked, rather kindly, to have a word with the good Doctor.  Armed with Dr. Pete's advice, Elisa asked if a pediatric cardiologist had reviewed Sam's echo results.  Dr. Smith explained that a cardiologist had for the first three, but hadn't had a chance to review the last one yet.  When Elisa kindly asked about the "pediatric" part of the title, Dr. Smith's demeanor slowly changed.  Was she worried that we were doubting her?  She actually asked "do you think we missed something?"  She started reviewing Sam's progress.  Gone was the "glass is half full" narrative.  This time, she was applauding Sam's progress.  The echo results were fantastic.  He was weaning successfully from the oxygen.  He was following, step-by-step, the course to be able to be given the blessing of good health by the NICU.  He was on the path to recovery.

Yet, the lioness didn't pounce.  She just got closer to the ground, stalking her prey with great quiet and strategy.  Elisa told the doctor about our lack of sleep.  She shared with her that we don't know why this is happening, and that we spend way too much time Googling for answers.  She talked about how we are sick with worry because we're afraid that the real cause of all of this is still to be discovered.  She even pointed out that the good doctor had been the one to say we needed to see a Cardiologist.  Why couldn't we get the ball rolling now?  We knew we'd be in the NICU for a couple days more (at the least).  Couldn't we kill two birds with one stone?  Before Dr. Smith knew it, the lioness had pounced.  Very sweet, very kind, Dr. Smith promised to touch base with the radiologist to find a pediatric cardiologist to review Sam's echo results to see if we could start understanding what was going on with his heart.  Again, she positivitely glowed with a review of Sam's prognosis, progress, and next steps.  He was doing great.  Elisa thanked her and started heading into see Sam.  She says that she got a bit misty eyed as she walked away.  I picture her licking her lips in triumph.

As we explore a bit more on the cardiologist side, I do want to update you with some Sam news.  On the blog, I added a little section in the top right corner where I can update his O2 progress without writing a full blog every time we see his readings.  But I do want to catch you up.  It's been a positive night.  At our 11:00am feeding, Sam was sitting at 2.5 lpm and 39% oxygen.  The weaning process began after we left...slow and steady at first, but (as one nurse said..."bouyed by a great echo result today!") faster through the day.  At 2:00pm, he had dropped to 33% oxygen.  At 5:00pm, he was down to 1.5 lpm and 33% oxygen.  Before Elisa even had a chance to leave, that number dropped to 30%.  At the 8:00pm feeding, Elisa was happy report that Sam was down to 27% oxygen.  That's 12% and 1.0 lpm down in the span of less than 12 hours.  Best of all, Sam is tolerating it well.  His oxygenation continues to adjust, and before you know it, he's topping out at 100 again...begging to have the oxygen dropped again.

What a day.  What a roller coaster.  And yes, another wave with a high, a low, and a high.  But I head into another marathon night (I get the 11:00pm and 2:00am feedings again, before Elisa heads back at 5:00am) with a happy reality.  It's one thing to have a partner, friend, and wife by my side.  She's my everything and my hero in how she's dealt with this difficult situation and still looked out for her little Sam, Lukas, and Miles.  It's quite another to know that she's a lioness.  Ready to sneak through the grass and pounce in order to protect her cub.  Yeah, that's my wife.  Color me lucky.  Color me blessed.  

Color me slightly scared of her.  In a good way, of course.  Right, dear?

Brad

Saving Sam (Chapter 1.13): It's all in the delivery

This morning, I think the entire family was a little on edge.  Another D-Day - another one where we don't know where we are going next.  Lukas, in particular, seemed to be struggling and on the edge of tears.  Lukas is our tender heart.  He worries about everything, from changes in his schedule, to leaving Mom & Dad, to leaving Grandma, to not going to see Nana.  Day in and out, he is a creature of routine and simply cares about everything, everyone, every day.  Today was no exception.  He was worried about Sam.  He wanted him to have a good test and to see good results.  You could tell he was struggling with the fact that he was heading off to school, not knowing how Sam was doing.  So Elisa gave him on of Sam's hospital binkies that she had pocketed when he spit it onto the NICU floor.

Lukas put the binky in his jacket pocket.  It was there in case he needed it.  He'd reach in and feel it, and worked with Grandma (who took him to school) to make sure he had transferred it to his shorts pocket (so that he was set when it got too warm to have a jacket on).  Lukas, in his own way, needed a little token of Sam's.  He (and Miles) are in one of the most difficult situations - they don't get to see Sam.  They don't get to tell him that they love him.  They have to just hope he gets better (knowing that when they see him again, he is).  

I could have had one of Sam's binkies in my pocket as we headed into our 11:00am feeding.  Elisa and I were both, like Lukas, on edge.  When we arrived, the Nitrous Oxide machine had been removed.  Sam was down to 37% oxygen (they had increased it overnight when his oxygenation went into the 92-94 range during a deep sleep cycle).  And the nurse stated that they were going to try to wean him off of the oxygen at a more dedicated pace.  The clench in our stomachs loosened a bit while we got Sam fed.  Little did we know that we would get a visit from a new Neonatologist (the small, humble hobbit is probably off for a few days), and the delivery of Sam's results left us with a definite "huh?"

Our newest Doctor is a female, named Dr. Smith (I believe).  The echocardiogram tech was busy doing an echo on another baby when we arrived, and I watched as the tech gave her the rundown of both babies.  I'd say they talked about Sam for about 15-20 seconds.  The Doctor wheeled over a chair and sat down.  Her news:  the pressure continues to come off of Sam's heart.  (I overheard) his highest pressure reading was 44.  I immediately thought back to the first D-Day and our Doctor telling us that normal readings were in the "40s and 50s".  According to this Doctor, while Sam was progressing, he wasn't there yet.  He was "almost" at normal readings.  She was also concerned that his heart was slightly enlarged (again, something our previous Doctor had stated he was "not surprised to see, since his right ventricle was working so hard for the first few days).  She stated that when Sam went home, very quickly we would want to see a cardiologist to try to "figure out what's going on with his heart".  

In no particular order, she also shared the following:  his eating was a good sign.  But she noticed that he was breathing heavier after the eating.  She wanted to start weaning off of the oxygen, but wasn't sure if we would be able to fully wean him down.  But we would need to wean him down so that they could have a 48-72 hour period without oxygen.  He might have to be sent home with home oxygen (umm...wait, so he's going to go 48-72 hours without oxygen as a test and then we'll give it back to him at home?).  She's going to lower his oxygen threshold from 95 as a low point to 92, and eventually to 90.  But she's not sure if he will respond to the lowered oxygen.  He seemed to be struggling a bit after eating...he was pooped (sleeping on Elisa's chest), but then I looked at the screen and his oxygen levels were at 100.  He must be off oxygen for 48-72 hours (our previous Dr. said 48 only).  They have no explanation for the enlarged heart.  They have no specific timetable for his release.  But when he goes home, he needs to see the pediatrician, cardiologist, and have oxygen at home...maybe.  All of this was wrapped in a pretty bow of "to be honest, this is my first day observing him, so I'm not sure what the other Doctors views are." 

I guess I have a problem with your bedside manner and news delivery when I have to ask the question "is this good news?" to which she replies a surprised "yes, it's very good news."  She said he was cute. Said he was getting better.  Said she was encouraged because his echos had all shown subsequent decline in the pulmonary hypertension (all three of them, which caused me to remind her that he had four).  The final confounding statement, however, was this.  "We won't be doing another echocardiogram, unless you'd like to see a comparative."  The delivery didn't make sense.  If his heart isn't better and you're not sure that he can leave the place without oxygen and a visit to the cardiologist, why would you feel good enough to not do another echo?  If it's good news, why do I now feel less clear about the next 2-3 days than I did before the echocardiogram? 

That being said, our next steps are....hmmm.   I can only insinuate that they will work on his oxygen to get it down far enough that he doesn't have to be on it.  Or maybe he does.  Or maybe he doesn't.  In my mind, two numbers become our focus.  His oxygen lpm and his oxygen percentages.  As he stands right now, he's at 2.5 ppm and 37% oxygen.  If he can get to 1.0 lpm oxygen, he gets off the oxygen machine and has a simple nasal cannula attached to the wall.  We breath 21% oxygen, which would constitute him getting to "room air levels".  

See, here I thought I needed to arm myself with a spare binky to get through our meeting with the new Doctor.  Little did I know that I'd instead need my Little Orphan Annie Secret Decoder Ring.  I guess I'll check the mailbox to see if that's arrived.

Brad

Saving Sam (Chapter 1.12): D-Day #2 Arrives...

We sit on the heels of our second major D-Day.  It feels like three or four weeks have passed since our first one, and I remember how nervous I was heading into it.  The stakes were so high with that one - the thought of heading up to Primary's to start all over from the beginning was daunting.  I still remember the Doctor approaching us after the third echocardiogram to tell us that Sam would be staying.  Folks, I hate getting emotional in front of people.  I think it's some sort of rule in the Man's Guide to the Universe.  And if you have to break down, don't do it in front of (or as a reaction to) other men.

But I couldn't help myself.  When he said the pressure on Sam's heart had lowered, my breath caught in my chest.  I sputtered out some air which quickly turned to tears.  I didn't really think about it at the time, but I remember our short, squat, humble little doctor putting his hand on my shoulder.  Yesterday, when my parents were visiting Sam, they met the doctor (I was proud...my Mom recognized him solely off of my blog description).  He specifically asked how we were holding up.  One day soon, I'd like to share more about the toll that having a NICU baby takes on your health, your heart, and your inherent parenting reaction.  I've just realized that having a NICU baby can make even the strongest man a blubbering....well...baby.  Then again, D-Day was a do-or-die kind of day.  And we'd set ourselves up for the bad news.

This D-Day feels different.  Maybe it's because we're not talking about what's wrong with him anymore, but are instead hoping that the treatment has held.  If you read my blog earlier, you'll know that Elisa and I were riding the wave today.  The stark reality of a significant oxygen bump had kicked us in the proverbial stomach...like we were getting a little too confident about this second D-Day.  As hard as it was to write that blog (looking back, I feel a bit bad about my ranting anger halfway through it), I think I needed the reality check.  Nothing about this journey (one that started around the holidays last year) has been altogether easy, planned, or strategic.  We've really been feeling our way, blindfolded, hoping that our instincts from our marriage and our two wonderful children would be enough to ensure we don't tumble over the edge.  Today's increase in oxygen needs just solidified the feeling of being totally helpless to a 1-week old baby and his little heart, little lungs, and gigantic will.

As I described it last time, Elisa and I are on a wave.  And every wave (unless it crashes on the rocks...which is a metaphor even I won't touch) rises back up.  Our 5:00pm and 8:00pm feedings taught us that.  Sam is responding again.  Maybe our figurative kick in the stomach was his literal one.  When Elisa went in at 5:00pm, they had dropped Sam's oxygen down to 38%.  Yes, it's only 1%.  But's its in the right direction!  Moreover, Elisa expressed to the nurse that every visit is torture - we don't know how he's doing or what to make of recent developments.  Lindsay took the time to make some salient points:

• Sam's oxygen stablized - and he's back on the path of weaning
• Sam's eating.  And her experience tells her that if a something is wrong with a little baby, the last thing they want to do is eat
• Sam's gaining weight.  
• Sam's acting like...a normal baby

The combination of a wide-eyed Sam, a supportive nurse, and slightly improving oxygen levels took the wave skyward.  The 8:00pm feeding has only reinforced it. Sam's oxygen dropped by 1% again.  He's currently at 37% and the nurse indicated that she wants to drop it more.  It's a wonderful feeling to know that the oxygen weaning process is starting to be considered, as opposed to the oxygen stabilizing process.  It gives us some peace as we head into another long evening (I get the pleasure of the 11:00pm and 2:00pm feedings again).  It gives us hope.  

Tomorrow morning, Sam will get his fourth echocardiogram.  It will simply tell us two things:  1) did the therapy of nitrous oxide (which took the pressure off of his heart) hold and 2) is his heart healing (remember that it was slightly enlarged)?  The second question might not be answered tomorrow, but the first undoubtedly will.  If he's regressing, and the wave dips down, I guess we suck it up and realize that we're still a little ways from shore.  If he's holding steady, I think we'll start looking for some dry land to walk out onto.  So tomorrow, send some good thoughts, vibes, and get those fingers out again for crossies.  Sam could use everyone's positive thoughts to help him take out milestone #2.  

When you're a 34 year old techie kind of guy, you seek answers from every avenue available.  I have found a great new tool to help me satiate the ravenous appetite that I have for knowledge.  It's called Google.  In the first week of this adventure, I primarily used Google to look up stuff about Sam's condition.  I tried to find case studies of kids that had beaten it.  I looked for statistics that helped me believe that there wouldn't be longstanding health ramifications.  I went so far (during the Nitrous phase) to start looking at medical PowerPoint presentations to understand the proper way to wean an infant.  None of it helps - in many ways, it pains a more grim and frightful story than you were hoping to find.  

In the past few days, I have still used Google.  But I've done it to find parents like me - blogs, message boards, Yahoo questions.  Anything that could help me see that Elisa and I are simply two parents like many others that are battling a very difficult situation.  I did such a search after writing the blog post about the wave, and I found a blog by a mother about a little child battling PPHN as well.  She described the NICU process not as a wave, but as a minefield.  You don't know what's going to happen when you take your next step.  I want to send that mother an email and say "I get you".  It's funny how important it is to have someone say "I understand what you're saying.  I know what you're feeling.  And it's okay."  Hey Mom...I get you.  I understand what you're saying.  I know what you're feeling.  And it's okay.  Everything's going to be okay.  

Everything's going to be okay.  

Brad

Saving Sam (Chapter 1.11): The rise and fall of the wave

One day, there will be a blog post about the experiences and stories of our Hypnobirthing classes.  Hypnobirthing is a method of winning the natural childbirth game through self control, hypnosis, and focus.  We had the opportunity to buy a CD that has two more generic Hypnobirthing routines - one of a mountain and one of a beach.  While I don't use the Hypnobirthing beach CD when I get stressed, I do tend to close my eyes when I'm overwhelmed and envision being back on Maui.  I can feel the sand between my toes.  I hear the surf.  It calms me.  It helps me focus on the rhythmic sounds of nature.  Somehow, I'm able to retune my own breathing and stress to the wave.  To the surf.  To the sound.

I didn't expect to be writing again so soon.  I've gotten so used to an early afternoon and late evening update, that you know this can't be something I'm overly excited about.  But as I do, I think of a wave.  The same droplet of water...almost instanteously transferring from a high point to a low.  Elisa and I got a wave this afternoon.  We're trying to keep our heads above water.

About 10 minutes before we were to leave for our 2:00pm feeding, Elisa got a call from the hospital.  On the other end of the line was a NICU nurse/social worker.  No, she wasn't calling to chew the fat or ask what we thought of the stunning accomodations for nursing.  She wanted to talk about transition - how do we start getting ready for the transition home?  She had spoken to the doctor who said that Sam was looking good, and that everything was predicated on tomorrow's echocardiogram.  This, we already knew.  But in that conversation, clearly St. Mark's is thinking of "what happens next."  And that includes us going home.  So we talked to her about new things...scary things, sure, but progressive subjects.  Did we get the baby on insurance?  Have we taken an infant CPR class?  How are we doing?  What does the support network look like at home?  Are we getting enough sleep?  Did we know that the insurance has Sam covered (currently) through Wednesday of next week?  Have we heard of the  car seat test?  We will be asked to bring in a carseat and Sam must hold his stats for periods in the car seat.  It was overwhelming.  Elisa got off of the phone, unsure of what to think, but buoyed by the idea that they are talking about us going home.  We left the house on a high.  I guess we just didn't know we were on the peak of a wave.

When we arrived at Level 2 NICU, Lindsay (yet another phenomenal nurse) had us set to go.  The nursing screens were already placed.  She stated that he was awake, changed, and ready for us.  As we walked up to him, we noticed his oxygen.  Not only was it now at 39%, he had also been pushed up to 2.5 lpm (liters per minute?).  When Lindsay came over, I inquired.  Over the last three hours, Sam's oxygenation levels had hovered around 90-94, where they needed it to be 95+.  They had continued to tinker with his levels and had arrived at 2.5 lpm and 39% for the last 75 minutes.  He seemed to be tolerating it.  I think she could see the fear, worry, and disappointment on our faces.  She immediately stated that she didn't think this was a step back.  She believed that Sam was using up the oxygen reserved he had stored with the Nitrous and we were simply asking his body to do it now and he was adjusting.  But she then stated that she would talk to the Doctor about "how high he'll want to go".

As the wave crashed into our newest low point, I had one thought.  Really?  We haven't had enough?  We need to be kicked around a couple more times until we have more permanent bruises to show that we passed some sort of sick test?  I know it isn't rational, but it is painful.  15 minutes before, we were driving to the hospital, talking about the car seat, getting Sam home, and how we couldn't imagine getting called if they weren't serious about us going home soon.  Now, we're staring at tomorrow's D-Day with trepidation and doubt, not comfort and confidence.  Is this a sign of a relapse?  Is Sam struggling to keep up?  Will we go back in 3 hours, only to hear that the Doctor is now concerned and wants to restart Nitrous Oxide?

Whereas D-Day #1 felt like a question of "are we getting better or worse?", tomorrow's decision day feels more like "are we almost done, or do we have to endure more?"  Frustratingly, Sam looks like a healthy baby.  He has wide eyes on most of our visits.  He eats well.  He snuggles into his mother like he was meant to be there for about 6 years.  Yet his lungs, heart, and body are concealing a secret - one that we desperately want to know and furiously fear.

If anything gives me comfort, it's the fact that Elisa put Sam onto her chest and held him for about 15 minutes...during that time, Sam's breathing was the calmest I had seen since he had been in NICU.  His oxygenation levels were at 100.  His heart beat was normal and consistent.  His stats were the picture of perfection.  When we put him back down, his breathing picked up a little.  His oxygenation dropped to an annoying 95 (illiciting a periodic alarm).  And we left with that all-too-familiar pit in our stomachs.  It tells me that Sam needs us.  Sam will get better with us.  But waiting and hoping for Sam to scientifically and medically clear the hurdles put in front of him in NICU is sometimes to much to bear, or even to process.

At times like these, when I'm overwhelmed; when I'm stressed...I close my eyes.  I feel the sand between my toes.  I hear the surf.  I feel the sun warming my face.  And I see the ocean rising and falling, rising and falling, rising and falling.  I can only hope that the next rise in the water is soon, is positive, and gives us something that I'm desperately trying to cling to.  Hope.

Brad

Saving Sam (Chapter 1.10): Is the nitrous oxide gone?

It is going to sound strange, I'm sure, but the milestone days...in which we need to see progress (the absence of which means backtracking), are easier than the days where nothing monumental is supposed to happen.  Don't get me wrong.  In the moment (uh...hello, D-Day #1!), they are horrific.  But when you're sitting around, waiting for the milestone to come on the next day, you kind of fall back into worrying about everything.

Sam was on Nitrous Oxide for about 4 days.  During those days, the only thing that was supposed to happen was...to let the Nitrous work.  So the stress was to watch beeping screens.  To see how his heart beat was, or how many breaths he was taking per minute.  Don't even get me started on the oxygenation sensor, which incessantly scares you by beeping when your child hits 95% oxygen saturation in his foot.

Yesterday and into this morning was a milestone day.  We were inching towards progress.  Last night, I alerted you all to the fact that Sam had been dropped to 2 ppm and the goal was to be off of the stuff by morning.  Elisa got some sleep last night (she has gone into the NICU every three hours for 7 straight days.  Put that in perspective...That's only 56 straight visits), so I headed in for the 11:00pm and 2:00am feedings.  At the 2:00am one, they decided to bring him down to 1 ppm.  Highly entertaining.  The first nurse adjusted it down and walked away.  The machine began to beep.  It had settled at a rate of 0.6 ppm.  So she adjusted it up a tick.  Wouldn't you know that the Nitrous quickly turned back to 2 ppm.  The first nurse gave up the ghost, so our regular nurse (the phenomenal Danielle) went to work on the machine.  It was almost like there was a hidden camera in it.  She would get it set and start trekking back to her station.  As she went to sit, the alarm would beep.  Back she would come, only to have the alarm settle when she touched the machine.  This went on for 3-4 times.  Finally, the first nurse came back and made some sort of joke about it being Sam's fault.  Somehow, I devolved the conversation into some gender jokes (Sam's a boy, so he's "whateva!) and the nurse's medical solution was just to stop the machine from beeping when it hit 0.5 ppm.  So Sam went from 2 ppm to .5 ppm.  Okay, then.

When Elisa and I headed in at 8:00am, we were pleasantly happy to see that the Nitrous Oxide machine was off.  Sam was now free of the stuff.  After turning it off, they had to tick his oxygen from 33% to 35%, and then she took it back down to 33% an hour later.  After the feeding (we found out at 11:00am), she had to tick it back up to 35%, where it still stands.  The nurse indicated that what they don't want to see is an upward progression.  Going from 35 to 37 and then hitting 40% would not be the sign we are looking for.  Going back and forth between 33-35% is okay by her right now.

So I'll cautiously say that Milestone 1/5 has been met.  He is off the stuff and is heading towards D-Day #2 - the fourth (and hopefully final) echocardiogram on Friday.  I say cautiously, though, because now we're in stress mode.  Our visits thus far have been filled with constant focus on his monitors.  How's his breathing?  Why is his oxygen at 94%?  Come on, we can get a couple percentage points!  Imagine our worry when we put him back down and his oxygen dropped to 85%.  Upon unwrapping him and discovering that Sam had twisted his ankle basically under his body, we adjusted him and he was back into the 97-97% range.  But the beeping - it doesn't just mean the monitor is reading something funny.  Now, it's proof (in our own screwed up heads) that he's relapsing back into the pulmonary hypertension.

It's a twisted game.  But one that I hope only exists for two more days.  Because if we can stay at 33-35% today (or better), and then get a good news echocardiogram, we can start to wean the oxygen.  We can start actually considering the possibility that home is closer than farther. But that's to come on Friday and Saturday.  For today isn't a milestone day.  It's a wait for the next milestone day day.  And those....those are some of the hardest ones.

Before I go, I'm struck again at the magnitude of Sam's struggles and how they have a radius far greater than the St. Mark's NICU.  We got a call this morning from Luke's teacher because we hadn't yet scheduled his Student/Parent conference meeting.  In that call, Elisa was informed that Lukas gives his teacher medical updates each day on how Sam is doing.  When we came home from our 11:00am feeding, my Mom dropped Miles off and told us that Miles had a meltdown because the picture of Sam (that he keeps in his preschool bag) was missing and he couldn't go without it.  She had to print a picture off of the internet and put it in his bag to comfort him.  If you want to see unconditional love, watch two brothers that have literally spent 15 minutes with their youngest sibling.  They're in love  They're lost.  They're coping too.  I guess we all are.

So today, on a non-milestone day, we will listen for beeping monitors.  We'll watch Sam's chest to see how many times it rises and falls.  And we'll cope.  In any/every way we know how.

Brad

Saving Sam (Chapter 1.09): Packing on the pounds (or ounces)

Before we start another marathon evening of feedings, etc. (I think Elisa might let me take one for her...with a bottle.  Still not considering lactating, folks), I wanted to update you on some of Sam's happenings.  I will now lovingly refer to the five steps required to get Sam home.  They are:

1. Wean of the Nitrous Oxide
2. Pass the echocardiogram
3. Wean off the oxygen
4. Spend 48 medically uninteresting hours in the NICU
5. Come home!

I figured I could give you an update and let you know that we need some of your special thoughts, because tonight (as everyone else will be fast asleep), Sam will near milestone #1.  When I blogged last, Sam was sitting at 4 ppm and 34% oxygen.  At noon, they dropped him to 3.  At 6:00pm, they dropped his Nitrous Oxide to 2 ppm.  I'm happy to report that Sam is showing no signs of relapse up to this point.  He's holding steady with his stats, and they even dropped his oxygen by 1%.  He's comfortably sitting at 33%.  2.5 hours into 2 ppm, and things look good.  But Sam has two big hurdles left (the biggest is getting off the stuff altogether).  At 12:00am, he will be lowered to 1 ppm.  And then at 6:00am, if everything looks good, will drop to 0.  This is usually the toughest wean of all.  Let's hope my first blog post tomorrow is celebrating successful weaning.

I am already gearing my stomach, courage, and hope up for Friday, September 20th.  That's D-Day #2...Sam will get his fourth echocardiogram.  We're looking for two main things.  First, we want the pressure in his right ventricle to continue to be in normal levels (40s, 50s).  Second, we would LOVE to see progress with the slight right ventricle enlargement from Sam's poor little ticker overworking the first 4 days of life.  We were told at his 8:00pm feeding that the oxygen will remain until after the echo. But things are aligned to progress...provided that Sam continues to meet the challenge.  

Before I go (I told you I could be a little less verbose), I also have two other updates on his condition.  First, the bili lights are history.  Sam's bili levels were 14+ two days ago.  Yesterday, they had dropped to 10.  Today, they were 7.  Good enough for the doctor.  Sam now gets to wear cute little outfits and be swaddled.  I much prefer this, as I think the constant suntanning was putting the kid to sleep.  He was zonked every feeding we saw him while the bili lights were glaring.  

Second, we got an update on Sam's weight.  Weight gain is a very important sign of health, growth, and the body getting enough to function (and store a bit away).  Sam was born at 8 lb. 3 oz.  Through Monday, he was hovering at 8 lb 4 oz. or so.  It always was a bit of a worry, as I was afraid that all of his energy was going to breathing, etc.  I'm very happy to announce that at his weigh-in this evening, Sam tipped the scales at 8 lb. 10 oz.  For those of you unaware, Elisa is like the Costco of breast milk.  You know, you go to Costco needing a jar of peanut butter and you leave with a can that will last you until the end of the world.  Yep, that's Elisa and breast milk.  It keeps flowing like the Nile River past the pyramids.  Clearly, Sam's creating milk stores in his body.  And it gives me hope that if he's gaining weight at this rapid pace, perhaps his body is finally healing.  

I keep waiting for the other shoe to drop.  We've had a string of good progress with Sam, and I just worry that there's a bitch slap right around the corner.  I sincerely hope I'm wrong.  Every time the boys ask about Sam coming home, my heart breaks.  Every time I see the empty crib, bassinet, or car seat, I want to curl up into ball.  And I'm supposed to be the strong one.  It's good I have Elisa to hold me up sometimes.  I wouldn't know what to do without her.  

Brad

Saving Sam (Chapter 1.08): The first view of the path home

As I'm writing this, we're about 10 minutes away from our little Sam turning 1 week old.  As Elisa and I prepared for the arrival of our third child, neither of us could have dreamt up a scenario that would have Sam still at the hospital after 1 week.  It probably wouldn't surprise you to know that it feels like 7 weeks.  Elisa is recovering so well from delivery - usually, the baby comes home and we battle with Elisa getting her bearings.  With all respect to my wonderful wife, I'd take that right now.  This one is exhausting.  For all of the parents out there, I'm sure you're nodding your head with understanding, picturing what it would be like to have a kid in the NICU.  For those that have had one, you don't even need to nod.  You probably shudder with not so friendly memories (except for the best one...taking your little prince or princess home).

Elisa and I have fallen into a three hour rhythm.  It starts about an hour before Sam's next feeding.  You get a pit in your stomach.  Food sounds awful.  You want to close your eyes and sleep, but hate the thoughts that are screaming through your head behind your eyelids.  We get into the car, and we're very quiet.  We throw out affirmations, hopes, pleadings...not expecting an answer, but trying to buoy us up for whatever we're going to face.  When we walk into the NICU, I always look at the board to see if Sam is still in Level 2.  Then I count the number of babies on the board (they're up to 16 now).  We open the door, and I often wonder what we'll see.  If I hear a beep before the door is open, I swear it has to be Sam's stats.  We walk over, get an update from the nurse, realize that we haven't had a relapse, and settle into feeding.  My favorite moments are burping the little man, holding him, and watching him wrap his body into Elisa's.  We painfully decide to leave, get him settled, and walk out.  There's more oxygen in our lungs.  The pit is gone (or at least, a little less pervasive).  We take the time to eat, shower, take care of the kids, etc.  All the while, the clock is ticking.  Usually, 90 minutes later, the pit slowly returns.  And the cycle begins anew.  

The 11:00AM feeding always gives us a slightly bigger pit in the stomach, as more often than not, we get our biggest update of the day (either from a nurse (after consulting with the Dr.) or from the Dr. himself).  Today, we chatted with the Doctor.  Our Neonatologist is a squat little man that looks like he graduated about 3 weeks ago.  There's a softness to him.  And a definite lack of arrogance.  We asked him a bunch of questions - how is he?  Are we progressing?  What happens if we see a relapse?  What are the next steps?  When can we take him home?  So let's share the answers.

How is he?

Sam is doing well.  We are currently going full-bore on getting him off the Nitrous Oxide.  It is clear from his stats and the third echocardiogram that the Nitrous is benefitting the little man.  Yesterday at the 11:00AM feeding, Sam was still sitting at 20 ppm of Nitrous Oxide.  That's when the weaning began.  Between now and then, Sam's ppm have dropped from 10, to 5, to 4.  The last 4 (3, 2, 1, 0) are a painstakingly slow process, because this is where you want to guard against a relapse of the pulmonary hypertension.

Are we progressing?

In a word, yes.  Sam has responded very well to the weaning, with a little adjustment to his oxygen levels.  If you'll remember, when we started the weaning process, Sam was at 2.0 lpm and 26% oxygen.  As he progressed from 15 to 10, they pushed his oxygen up a couple percentage points.  His greatest leap was from 10 to 5, where he hit 34% oxygen levels.  While I was worried throughout the night at this development, I'm happy to say that moving from 5 to 4, he's still holding at 34%.  As I write this blog, they should be decreasing the Nitrous Oxide from 4 to 3 for the next 6 hours.  If he doesn't relapse, our timetable would be 3 ppm at 12:00PM.  2 ppm at 6:00PM.  1 ppm at 12:00AM, and 0 ppm at 6:00AM tomorrow.  

What happens if we see a relapse?

Every step down on the Nitrous Oxide (with Sam's toleration) means that the pulmonary hypertension is still resolved.  If we see a relapse, what it is indicating is that the pulmonary hypertension isn't fully resolved yet, and further therapy (i.e. more Nitrous Oxide) is required before weaning can take place.  If we do see any sort of relapse (indicated by the amount of oxygen Sam needs), we will re-up the nitrous oxide to ensure that it eradicates the pulmonary hypertension.

What are the next steps?

Most helpfully, we asked for and got a view into the path home.  We are not there yet.  We have a multitude of milestones that we need to hit.  But we can see and understand which milestones are coming and what we (well, Sam) needs to accomplish.

1. Wean fully off of the Nitrous Oxide
2. The day after successful weaning, they will run an echocardiogram (D-Day #2)
3. If the echo still looks good and the pulmonary hypertension is gone, we wean the oxygen
4. Once he is fully off of everything, they want him to be stable for 48 hours
5. If the 4 above steps have been completed, they kick us out

It tells us that he's not going home on Friday, or on the weekend.  It's not perfect.  But we have our 4 milestones, with the fifth being the greatest gift of all - bringing Sam home.  Kind of fitting that we have 5 steps.  You know, five is my lucky number and we are indeed the Fab Five.  

When can we take him home?

I've done some math in my head (I know, I should leave it up to Elisa), but if we perfectly progress, that would mean that Step 1 would be complete by tomorrow.  The echocardiogram would be on Friday.  And we're staring at 48-hours (or two days) from there.  Best case scenario is a Monday celebration.  Sam still has so much to do, but the light (ever so dim) at the end of the tunnel is at least slightly illuminated.

That's all for this update.  Join me at 12:21PM and wish little Sam a happy 1-week birthday.  Let's all hope that his 2-week birthday can be celebrated from his home, with his brothers, mommy, and daddy by his side.  

Brad

Saving Sam (Chapter 1.07): Toleration

Apparently, I'm getting quite long winded when giving you guys updates.  I sincerely apologize to those of you who want me to cut to the chase and give you an update.  But that's only half of why I'm doing this blog about Sam.  The other is my therapy, remember?  If you love Elisa at all, you'll know that a crazy Brad is not helpful.  Sarcastic Brad is bad enough.

And since this is therapy, I need some.  Because the boys came home tonight.  No, they weren't hanging from the chandelier or anything.  They're good kids...angels, in fact, and Lukas continues to question why Sam's arrival didn't go as planned (we all are, buddy).  But the arrival of the boys means that I have to send Elisa out to the hospital for 5 of the 8 feedings alone.  I can't imagine that it's easy for her.  She has to get out of bed.  She has to drive.  She has to put up with me asking her to park in the driveway of the Women's Pavilion so that Security can keep her safe at all times.  She's a warrior.  But I feel selfishly sad to be away from my little man during the evenings.  Unless I grow breasts (I'm not planning to...I've seen the Discovery Channel special about Lactating Men...no thanks), I'm not in an ideal position to help Sam out in the feeding department.  We are quite militant about establishing breastfeeding without the introduction of a bottle for a little while, so my job fell to the less important things like watching out for the 75 cords hooked up to him, or burping him (he's gifted at this...ah, the pride of his father...can't wait to hear him fart).  Instead, I sit in bed and worry when Elisa hasn't provided me with a blog post worth of medical updates from the NICU.  I want to help with Sam, and to see that beautiful boy as much as I can.  As I sort through it, I guess I'm simply struck by the feeling of being a bad parent while trying to be a good one.  Analyze that one.

Sam's update tonight is more progress.  As I filled you in early, Sam's weaning off Nitrous Oxide began at about 11:30AM.  He moved from 20 ppm to 15 ppm.  When we visited at 2:00PM, we were happy to see that not only was his oxygenation holding, the nurse had also dropped it down a percent.  So he was tolerating and was at 26%.  The nurse reinforced that so long as his oxygen needs remain below 40%, he's seemed to be handling the weaning.  At the 5:00PM feeding, we were relieved to know that Sam was still holding steady and the nurse was planning to move him down to 10 ppm.

Fresh off of our 8:00PM feeding (don't worry, I'm not a speed typer...the little man was so hungry, Elisa got called to head in 25 minutes early).  I am happy to report that Sam has tolerated 10 ppm for the last 2 hours, and is still at 26% oxygen.  The NICU nurse anticipates that they will drop him to 5 ppm sometime during the night.  This nurse also noticed that Sam is eating longer.  He attributed this to two things:  the pressure coming off of Sam's heart and the decrease in jaundice.  Both (the heart makes sense, the jaundice I was more surprised by) can make Sam more tired.  And the more awake he is, the more he eats.  The more he eats, the better his energy.  I love the strength in this week old angel.  On a related note, an incredibly important member of my support staff said the other day that "if Sam is anything like his father, he's a fighter".  While I appreciate the words and strength, I've been married to Elisa for over 10 years, and no one fights like her.  

I kid, I kid.  

Keep it up, Sam.  Keep it up, Elisa.  

Saving Sam (Chapter 1.06): The weaning process commences

Good afternoon, all.  I'm sorry that today's first update is a little late.  We decided to return home between feedings (going so far as sleeping for a couple hours before trekking to the hospital for night feedings) and have also brought the boys home today.  I think the boys (and us) need a bit of normalcy.  But that doesn't mean things haven't been happening with little Sam.  Today is another day of news, progress, and, of course, hope.

Last night's nurse was a new one...who I will forever know as Waldo socks.  We walked into Level 2 NICU at 8:00pm last night and from across the room, every eye (even the other NICU babies, I'm thinking) was drawn to these pink, red, and white socks.  The nurse was wearing scrubs, but they were hoisted up like knickers (you know...the Payne Stewart golf attire special).  From calf to foot, these socks appeared brighter than the bili lights shining on Sam.  As we approached, I was hopeful that I could deliver a sarcastic comment that would be taken as a compliment.  My "hey, nice socks!" was dripping with sarcasm...and she thanked me for the compliment.  I am quite accomplished in this area of specialization.

More importantly, however, was Sam's appearance throughout the night.  Our 3-hour routine had developed into the following: 1) change Sam's diaper.  2) repeat as necessary.  3) repeat as necessary. 4)  feed Sam 5) reconstruct his bed 6) turn on the bili lights and 7) go home.  As we went through this routine (don't worry, more on steps 1-3, 5 below), you couldn't help but notice the change in his skin color.  Sam had never progressed to pumpkin status, but he was yellow/orangish.  Each time we saw him, he seemed more caucasian (with a hint of tan, of course).  She drew blood at 5:00AM to test the bili levels and we waited.

Which takes me to those steps I mentioned earlier.  Ladies and gents, we have a pee and poop specialist.  We also have a pee and poop strategist.  Specialist: he sure is doing a lot of it.  You can count on him peeing and pooping at basically every meal.  Strategist:  he doesn't make it easy.  More often than not, he poops first.  And while we're cleaning that up (exposed to the cool air), he pees through everything.  Keep in mind, I'm not saying that he pees through an outfit.  No, he hits the outfit, the bed, the towel that they use to keep him stationary, the bed cover, and the bed itself.  Literally, they have changed all of them 6-7 times in a 12-hour shift.  Needless to say, the specialist and strategist is getting better at his job.  But I'll take pee and poop in any fashion right now.  I'll regret saying that when he gets home and starts spraying the walls.  But for now, specialize and strategize all you want, Sam.

This morning at our 11:00AM feeding, we got good updates on Sam's progress.  When we arrived, we were a bit disappointed that the doctor hadn't made it to Sam yet.  However, this wasn't due to not trying.  The NICU had an influx of Level 3 kids last night and into this morning.  At one point, I think there were 7-8 total kids in NICU.  This morning, there were 14.  And as the parent of a micro mini graduate, I say give the Level 3s all the love and affection they could ever need.  Every child needs to get better.  Every parent needs to get their baby.

First up was the bili update.  When they started the lights, they did so because his levels were above 14.  Again, don't ask me what the number means.  I just put into a chart in my head and need to know if we want it to go up or down.  The goal here is to go down, and this morning's reading was a 10.  The nurse was waiting for the Dr. to give orders to stop the bili lights.  So as of now, he's still suntanning but that seems to be getting close to stopping.

As we were wrapping up (from Sam's best feeding to date, I will say), another nurse came over and alerted us that the Dr. also wanted to start weaning from the Nitrous Oxide.  This is a slow process, and a critical one to show patience with.  Dropping it too quickly will lead to a relapse of the pulmonary hypertension, so taking deep breaths and awaiting small baby steps is the key.  Sam was on 20 ppm (parts per minute?) of Nitrous Oxide.  We watched as she dropped it to 15.  They will hold steady for 6 hours.  If he keeps his oxygen requirements below 40% (he's at 27% now), they will take him down to 10, then 5.  Interestingly enough, the hardest part to wean is from 5 to 0.  So they go one at a time.  5, 4, 3, 2, 1.  And then off.  If he continues to tolerate, they continue to drop.  If he has a hiccup, they return to the last level he tolerated.  As an example, if he dropped all the way to 5 and then struggled, they'd take him back to 10, not to 20.  Make sense?  So every level that he tolerates means that the previous level is toast.  We shouldn't visit it again.   So the magic number is 0.  We're currently at 15 and hoping that we see a kid that's tolerating the drop when we go at 2:00PM.

It's interesting what seems to hit me the most when I wonder how Sam is doing.  Sure, all of these interventions and his levels are critical.  From a medical perspective, they are the key to him coming home.  But for me, the best thing I've seen since early this morning to the 11:00AM feeding is that Sam is just more awake.  He fully wakes when we arrive.  He cries for milk.  He eats more, burps like a champ, and then stays awake when we put him back down.  As our nurse (the oxygen fiddler from yesterday is back) said this morning, "maybe he's starting to feel better!".  Two days ago, the statement was "he doesn't know how sick he is."  Yeah, I'll take the new statement.  And will happily buy every NICU nurse a brand new pair of Waldo socks when we get to hear that Sam is better.

Who knows?  Maybe it'll start a NICU fashion trend.

Brad

Saving Sam (Chapter 1.05): Fiddling with oxygen

I'm trying my best not to make the trip to NICU a play-by-play Gamecast.  I know many of you might be checking often, but I can't bring myself to unload at all of you every three hours.  Trust me, I doubt you could handle it either.  But I do have some updates on the other happenings of Day 5 of our NICU journey (and Sam's long trek home...he will get there eventually).

Our nurse today was Allison, and she was wonderful.  In fact, almost all of the NICU nurses have been incredibly special.  We've had a couple where we realize the standard isn't being met, but we just power through a 12-hour shift and make fun of them behind our backs.  Okay, not really.  I just tweet sarcastic comments to my 6 random followers.  Okay, not really.  But I think these sarcastic thoughts and then quickly think about the look Elisa would give me if I said them and I bite my tongue.  But back to Allison.  I love her for a couple things.  First, she consistently commented on how great Sam looked.  When a NICU nurse says "I know he's sick, but he sure looks like a normal baby", it is both helpful and heartbreaking that we're in this situation at all.

Second, she got permission to fiddle with Sam's oxygen levels.  I told my Mom the other day that all I wanted was to see them backing off some of the things, as opposed to adding on.  For the first four days, it really felt like we just kept adding interventions, and the doors home got a little farther away.  But Allison proactively started dropping his oxygen levels to see how he did.  You see, there is a blue line and number on Sam's monitor...it's the one that measures oxygenation in Sam's foot (to show that his extremities are getting oxygen rich blood).  It kept capping at 100%, so Allison started moving it down.  At the start of the day, Sam's oxygen level was 32%.  By his 5:00pm feeding, he was at 27% and she was toying with the idea of dropping it a bit more.  For those less scientifically inclined, human beings breathe 20.9% oxygen from the air.  27% doesn't feel that far away.

Tomorrow, we don't have another D-Day.  But we have a critically important one.  Tomorrow, they are going to gradually start weaning Sam off of the Nitrous Oxide.  They must do it slowly, so that Sam doesn't have a relapse.  It feels like we're three big steps away from seeing progress towards taking Sam home: 1) Successfully weaning off of Nitrous Oxide.  2) Successfully weaning off of oxygen.  3) Another echocardiogram that shows that the pressure in Sam's heart hasn't increased.

Before I do sign off for the day (don't worry, I'll be back tomorrow for more riveting explanations of blue lines on monitors!), I do have one more story.  Elisa and I have stopped the vagrant lifestyle and will be sleeping at home tonight.  We live 5 minutes away from St. Mark's, so we're going to try to do the driving thing over for his feedings.  If that is successful, we'll bring the boys home tomorrow and try to establish some normal routine while Elisa and I go back and forth from the hospital.  I love my boys more than anything (well, okay...equal to the rockstar of a wife that gave them to me), and I can't imagine the toll that this is taking on them.  Lukas told my Mom this evening that it felt like Sam didn't exist since he had only seen him on the first day.  He also said that he was supposed to be home with Mom, Dad, Miles, and Sam by now.

Children have a way of seeing the truth of a situation and not being afraid to speak the hurt.  I guess my point is that I want to thank you all for allowing me to be a kid in my blogs.  I'm trying to say the truth.  I'm trying to speak the hurt.  Because deep down, Sam's heart and each member of our family is broken right now.  And we need to individually heal as well.  The boys will do it through snuggles.  Elisa will do it by hitting me (or by other means).  I tend to do it by writing to my best friend...my pen, my keyboard, my writing.  I just appreciate the opportunity to lean on that vast community of quiet observers that let me.

Brad

P.S. I also changed the comments section on here...I realized that you had to sign your life away to a Google account.  Now you can anonymously mock my writing. :P

Saving Sam (Chapter 1.04): D-Day Results

Elisa and I are trying something new today - we're going home in between feedings.  We're hoping it gives us a sense of normalcy, allows us to rest, and gives us something to do (cleaning, laundry, etc.)  Otherwise, we sit in the hospital room (vagrants, remember?) and worry.  Sadly, in between our 8:00AM and 11:00AM feedings, I don't think anything could have stopped the worry.  We walked around the house, half sick to our stomachs, half crying.  And I think, to protect ourselves, we started the process of expecting to get a bad echocardiogram result.  We started thinking through what it would mean to be heading to Primary Children's Hospital and what could be wrong with our precious little boy.

We arrived about 15 minutes before 11:00AM - shockingly (not), we couldn't sit and wait.  We had to go.  We walked in, I sat down while Elisa went to work on poking/prodding Sam, and the Doctor approached.  To catch you up, we were facing one of two scenarios today.  Either 1) the Nitrous Oxide was working to take the pressure of Sam's right side of his heart and pulmonary hypertension or 2) we saw no progress, and would be heading to Primary Children's to restart the diagnostic process.

I've never wanted to hug a male stranger more than that moment.  The words coming out of his mouth were like a sweet elixir to the pain that was slowly pooling in between me and Elisa.  They were still waiting for the official review of the echocardiogram, but the technician gave the Neonatologist the rundown.  The pressure on Sam's right side of his heart had improved.  Whereas his first two scans showed pressure levels in the 70s (don't EVEN ask me what that means), this scan showed Sam in the 50s.  When I asked the doctor what was normal, he stated "in the 40s and 50s".  He did say that because Sam's heart has been working so hard, the right side is a bit enlarged.  He let us know that the heart is a muscle (hey, anatomy class paid off!) and when the muscle is overworked, the muscle gets bigger.  It will take some time without the extra pressure for Sam's heart to return to normal size.

So what next?  We will keep on the Nitrous Oxide for the remainder of the day, and then will start to wean him off of the stuff.  You have to wean very slowly (as in, baby steps every 6 hours or so) off of the Oxide; otherwise, you risk a relapse of the pulmonary hypertension.  In another sweet as silk moment, the Doctor also let us know that Sam would be "getting one more echocardiogram before we send him home."  Elisa was great about pushing on what that meant.  The doctor indicated that as long as Sam continues to make progress, he sees no reason why he couldn't go home within a week.

While it's not a perfect situation (he's still in Level 2 NICU, he has some enlargement in his heart, he's still in Level 2 NICU, and he's still in Level 2 NICU), it's absolutely great news to know that he's not going to Primary Children's.  St. Marks believes that can get the boy set. As for where we go from here, we start the weaning process, we set ourselves up for another D-Day, and we hope against hope that we can go home soon.

Finally, because he's there and the Dr. saw an uptick of his bill levels, Sam is going under the lights to help with some jaundice.  Somehow, I'm just fine with that.  Miles was jaundiced and looked like a pumpkin at Halloween.  I'll take some lights to help Sam even more.

Two more things before I sign off for this update.  One is a vagrant story that you can laugh at.  The other is something we heard from the very first NICU nurse we met.  Last night (well, this morning),  Elisa and I had headed back after our 5:00PM feeding.  This is usually our last chance to catch an hour of sleep before the day begins, and we got back, turned off the lights, and snuggled into...Elisa's hospital bed and my convertible chair/sofa/bed thingy.  And then we heard it.  My first thought was that someone on the post-partum level was in severe pain.  A woman was moaning.  Very loudly.  Was she in pain?  Having horrible post-partum depression?  Did she get bad news?

I slid off to sleep.  When we woke up, I asked Elisa if she heard Moaning Myrtle last night.  A direct quote, Elisa said "oh yes.  She sure was enjoying that sex."  Ummm....  Suddenly, the moaning became clear.  Some couple had obviously headed down to the vagrant section of the post-partum floor, probably figuring it to be abandoned.  And they (Dr/Nurse, anyone?) definitely got it on.  For the vagrants to hear.  If anything, it makes you realize that the world does keep on turning, regardless of what's happening with your little one in a hospital NICU.  So to Mr. & Mrs. Sex in the darkened hospital wing, the vagrants hope you enjoyed.

On a more serious note, I was reminded by Elisa of something our very first NICU nurse said when Sam entered their care.  She said that he was a boy, and boys tend to focus on one thing at a time (I will ignore the actual truth of this from an adult male perspective).  At the time, we wondered if Sam would do the same.  Elisa said this morning (as we headed in for the news) that Sam had chosen feeding first.  Now he was working on his heart and breathing.  It gave me hope at the moment.  And the hope paid off.

One of my favorite movies is The Shawshank Redemption.  Very late in the movie, you hear a quote from the protagonist that reverberates with me every time I feel down about my little Sam.  I'll leave it with you - because it's okay to hope that things will get better, even when it feels like they won't.  Sometimes, it's the only thing pulling us out of bed through this last week.

Hope is a good thing.  Maybe the best of things.  And no good thing ever dies.

Damn right, little man.  Damn right.

Brad

Saving Sam (Chapter 1.03): Prepping for D-Day

Two more feedings down, and Sam continues to stay the course.  I was pleasantly surprised when we went down for the 5:00pm feeding.  They didn't end up increasing Sam's liters per minute of oxygen.  Instead, they just kicked the up the percentage of oxygen to 32% (from from 29%).  This is still less oxygen than he was receiving before the Nitrous Oxide.  I won't even try to do the math.  But I'll take the 1/3 drop in something with a 4% increase elsewhere.  In other parts of the world, they call this "math that makes you feel better".  Yeah...

Sam continues to have better, more calm and measured breathing.  It really is quite impressive in his change since he started received the Nitrous Oxide.  Hopefully that means good things for his little heart.  At our 8:00PM feeding, we asked a bunch of questions regarding the tests that they said they just ran.  Apparently, it was standard stuff - a blood gas (?) that measures the pH, carbon dioxide, and oxygen levels.  Everything looked good.  He is also hold at 8 lbs. 5 oz, which is 2 ounces more than he was born.

The last part of our conversation with the nurse revolved around tomorrow.  Sam will get his third echocardiogram and x-ray as they check to see if any progress has been made.  I think you could consider it "D-Day".  As in...deciding what to do next.  If they see improvement in the echo, we will continue to hang out at St. Mark's and we can start looking to kick this and move forward.  However, if we don't see measurable progress, we'll probably move to Primary Children's.  If everyone could cross their fingers, toes, pinky toes, legs, and anything else that would provide good luck by crossing, we would appreciate it.  Progress tomorrow (thanks to the Nitrous) would be a gift.

Before I sign off, Elisa and I just want to thank everyone for reaching out today.  We are overwhelmed with your love, thoughts, and words.  I think we've discovered a hospital's worth of doctors and nurses in our support network, and we appreciate your patience.  Even if you aren't medically trained, your words are reaching us (and I'm confident are reaching Sam).  It's amazing how a Facebook comment, text, email, or other means of communication catches me in a weak moment and I end up crying.  You can rest assured I'm already planning a party when we can take our little man home.

Saving Sam (Chapter 1.02): Down a level

Quick update - and I'm testing my resolve to do this, even when it isn't the world's greatest step forward.  We went down for another excellent feeding and got two pieces of news.  First, Sam's oxygen levels have dipped a bit since they went from 3.0L to 2.0L (in a first attempt to start weaning the oxygen).  As such, they are planning on pushing him back up.  It's disappointing.  One step forward, another back.

We were also told that he is moving to Level 2 NICU.  This means that each nurse will have 2 babies to watch as opposed to one.  I inquired as to whether or not this was a graduation (it literally broke my heart to hear another couple get the news that their child had graduated...petty, I know).  I asked if it was a "mini graduation".  Her response was "a micro mini graduation".  I'd call that getting placated.

I honestly am happy for any parents that get the graduation news.  I just want it for Sam.  As we left Level 3 to let him rest, I couldn't help but notice that every other kid was out of Level 3.  When will it be his turn?

Brad

Saving Sam (Chapter 1.01): Sam's Story

This is supposed to be the return of the blog - a triumphant 17-part story about how Elisa and I got pregnant (without planning to), survived the most unique pregnancy of the three, and we watched in awe as Elisa delivered naturally.  All of those things are true, but none of them really matter right now.  Maybe one day, when we can laugh and look back, knowing that everything turned out alright.  Unfortunately, we're not there yet.  But there is still a story to tell - and one that must be told for my own sanity.  As a man, I feel like there's something wrong with me that I'm always on the edge of a breakdown.  It's not supposed to be like this.  But it is like this.

This is the story of Sam.  One whose next chapters are still to be written.

Elisa did deliver naturally at 12:21PM on Wednesday, September 11.  It's funny.  I remember thinking that 9/11 meant something for all of us before this last week.  Now it means something altogether different.  It means the start of my beautiful boy's life.  Upon delivery, Sam had a bunch of fluid in his lungs.  They sunctioned him out, and I remember the nurse joking that they had gotten 6 ml out, which is more than the newborn stomach is supposed to hold.  After Elisa was taken care of, I was able to present Sam to her and she immediately started bonding.  He was a bit lethargic (which slightly surprised Elisa, since the natural birth was meant partially to avoid this), but beautiful.  After an hour of thinking about it, Sam latched on and the breastfeeding game began.  Soon after, we were transported up to post-partum recovery and I was able to take the baby for his first bath.  I even got the blinds open while proud brothers (Lukas and Miles) got to watch.

Near the end of the bath, one of the nurses commented that Sam's feet looked a little blue.  As an extra precaution, they took blood pressure readings in each extremity.  He passed the test, and they chalked it up to just adjusting to life outside the womb.  The rest of Wednesday progressed, and while he was eating okay, we was a bit lethargic while doing so.  The next morning (at about 3:30AM), Elisa tried to feed Sam and he wouldn't wake enough to eat.  Luckily, her nurse arrived for a check-up on Elisa soon after and thought Sam seemed a little cold and that his feet were a bit blue as well.  She consulted with the nursery, and came back to get him.  They were going to look him over and make sure he was okay.

Not 15 minutes later, she returned with news...Sam needed to head to the NICU.  They had done a glucose reading that was very low (18), when it should have been 50+.  They were also worried about the blue tint to his extremities.  Before we knew it, we were down in the NICU, watching the nurses scurry around.  We watched them put an IV in his hand.  We watched them put oxygen in his nose.  We watched them draw blood, and the beeping of machines began.  While we were there, our pediatrician called and asked to speak with me.  Dr. Pete (WONDERFUL Pediatric doctor, by the way) let me know that he was concerned about a condition called "Aortic Stenosis".  This is a condition where the entry from the heart to the aorta continues to close.  Per Dr. Pete, everything was pointing in that direction.  With that, we were told that blood tests would be run.  A chest X-Ray would be performed.  And Sam would be getting an echocardiogram because they also detected a murmur.  This is the part where you could say I felt like they were "piling on".

We spent time with Sam, and Elisa started pumping (to keep her breast milk supply up) and waited for the results of the echo.  Dr. Lupine, the neonatologist in the NICU, let us know that Sam was doing okay.  His glucose had come up thanks to some sugar water.  The IVs would keep him from being dehydrated.  He did have a murmur, which the Dr. characterized as "probably innocent".  Every newborn has a hole in their heart so that mom can shunt the blood away from the lungs in utero. Most babies are born with this closing up.  Sam's was still open - nothing to worry about, but it was another thing to watch.  Sam didn't have Aortic Stenosis.  Instead, he had pulmonary hypertension.  To describe it in as simple terms as I can, Sam was having a difficult time transitioning from Mom.  The vessels going to the lungs were tight...we needed the oxygen to relax those vessels so that his heart didn't have to work as hard.

After the echo, the Dr. stated that they were monitoring two things for him to be cleared.  1) feed himself.  2) Oxygen levels to be high. Think of it as a percentage...they have a monitor on his foot and the goal is to be 98-99-100.  Early on Thursday, the monitors were reading 88-89-90.  Currently, they were hovering around 92-95.  With that in mind, we spent the majority of Thursday watching little Sam sleep.  According to the nurses, he just didn't have the energy to wake, eat, etc.

Friday morning brought similar news.  Sam was sleeping through the morning.  Elisa was pumping away.  He still hadn't eaten since the day he was born.  IV fluids had allowed a couple wet diapers, and he finally had his first poop, but his lack of eating certainly wasn't helping his energy.  I went down to the NICU around 12:00PM.  I got a little surprise.  Sam was awake.  Staring around, being adorable.  I sat with him for 90 minutes and he was awake and alert for about 45 of those minutes.  I reported back to Elisa with pictures that at least I got to see his eyes.  We switched places and Elisa went down to see him.  Imagine my delight when we let me know that he was acting hungry.  She nursed him.  With oxygen in his nose and cords all around, Elisa held her little boy and fed him for the first time since Thursday morning.

I was ecstatic.  Perhaps we were actually going to get home soon.  In addition, he had been moved from Level 3 NICU to Level 1.  Perhaps I was just happy about it, but the room seemed brighter.  Less dark and gloomy.  We came back at 5, and while he didn't eat great, he ate a bit.  We came back at 8 and he ate.  And then we were told he was heading back to Level 3.  Why?  We figured it was probably a staffing matter.  At least, we hoped.  So back we went to Level 3 and (like good little soldiers), went down every 3 hours to feed Sam.  And every time, with varying levels of success, he'd eat.

We headed into Saturday cautiously optimistic.  We found out that Sam was going to be having another echocardiogram to see how much progress he had made.  We spent the day going down for feedings, only to be disappointed that we didn't get to talk to the Doctor.  I did notice, as the day progressed, that Sam's respiratory rate (number of breathes per minute) seemed to be increasing.  I brushed it off as too much time trying to play Dr. Brad.

Around the 5:00PM feeding, we finally were able to talk to the Dr.  And we were met with disappointment.  Not much had changed from the first echocardiogram to the second.  And he wanted to start Sam on Nitrous Oxide because he didn't want the right ventricle of his heart to have to continue to beat so hard.  We were now getting good oxygen readings (98-99-100), but he was having to work to get there.  The Dr. stated his utter confusion at Sam.  Similar infants with Pulmonary Hypertension were much worse and much more sick.  He mentioned that he was shocked Sam wasn't on a ventilator. He looked and acted so good except for the echo readings and breathing.  The hope was for the nitrous to relax the vessels and get the heart to work a little less vigorously.  The concern, however, was that the right side of his heart was still having to work harder than he liked.  He stated that another echo would be performed on Monday.  If we didn't see progress, he'd start exploring more rare causes, but he really didn't think that was the case because Sam looked good in other areas.

Needless to say, we felt down.  Back to the room and our routine.  In fact, by this time, Elisa had already been discharged for a day, and we are currently boarding in a dark end of the post-partum floor.  It feels like we're vagrants, to be honest.  They don't come around.  The garbage doesn't get emptied.  And I'm tempted to army crawl any time that I need to get water for Elisa.  We headed into the evening with pits in our stomach.  This was a step back.  Going home didn't feel close.

There has been a bit of silver lining with every visit since last night, though.  Since the nitrous oxide has been started, his breathing has gotten a bit better on every visit.  At first, I was pretty convinced that I was just...well...convincing myself.  But it is pretty clear in his breathing that it is slowing down.  Again, I'm no Doctor (and I didn't stay at a Holiday Inn...I'm a vagrant, remember?), but I'm encouraged.  Moreover, he is nearly off supplemental IV fluids since he's eating well.  The hope is that the IV can come out of his poor little head this evening.

We aren't sure what's next.  We have no idea when we'll be able to take him home from the hospital.  Who knows if the echocardiogram will be hopeful or concerning.  But one thing is for sure...and everyone (Nurses, Doctors, etc.) is saying it.  Sam is 1) beautiful and 2) a fighter

Often it's too hard to post to Facebook and we have purposefully kept this to ourselves as we try to process.  But I'll be using the blog to update Sam's status and how he's progressing.  To everyone that has reached out, we love you.  Send good vibes to our little Sam.

I expect his story to be a long and good one.

Brad

Pierce Vacation 2012 - Photoblog (Part 3)

Welcome to the final entry of the photoblog.  Today, we cover Days 7-9 (we didn't take any pictures of our travel day home).  So enjoy...seeing these pictures has even made me consider one final blog to tie up loose ends.  What say you?

DAY 7

We were so excited for Chef Mickey's.  And then got to take our picture with a statue...

At breakfast, Donald came to the table.  All seemed quiet and happy.

As you can see from this picture, only Lukas was there for Mickey's first visit.  Miles and I were exploring the bathroom after "the catch".

Mickey was good enough to come back...but did look a little worse for wear.

After a long break in the hotel room while Miles recovered, we headed to Disney Studios.  A visit to see Lightning McQueen was in order.  

And then Lightning revved his engine.  You can see the change in Miles' expression.

At this point in the trip, Lukas decided to start posing for pictures.  More examples to come...

DAY 8

Our next trip on Dinosaur.  Lukas couldn't bear to even look, but he was braver with Grandma and Grandpa (and at the back of the jeep!).  Still "lost his scream", though.

Lukas was brave as usual on Expedition Everest.  

Elisa had the look of horror as we went down "the hill".  Apparently, I was afraid she'd fall out.  Or was that comfort I was providing?  Let's go with comfort.

Back at Beaches & Cream, the boys were spoiled with Mickey sundaes.  

During our night swimming, Miles was still a ham...

The boys enjoyed the whirlpool.

DAY 9

On the last full day of our trip, Lukas started things off with some more posing.

Onto Dumbo, Miles and Daddy were ready to fly.

So were Grandma and Lukas!

The kids tried to pose for another picture after.  I, apparently, decided to lounge like I was at the pool.

On the Tomorrowland Transit Authority, Lukas was loving Grandma and Grandpa.  

Miles, meanwhile, had perfected his camera smile

Take a look at the level of focus in our teacup.  No, that's not focus.  That's me just staring at the wheel so I don't throw up from how fast we're spinning. :)

Miles, on his favorite ride, as the vacation starts to come to a close

And the final scene as we walked out.  Disney World was decked out for Halloween.  We slowly walked out and said goodbye to a fantastic vacation.

And that does it.  12 blogs.  10 Days.  3 photoblogs.  Should I write one more for old times' sake?  I did clearly miss some good stories...fans, Illuminations Cruise, pin trading horror stories.  Hmmm...maybe.