A's & Beep's

Edward is now past 30 weeks gestationally and will mark 31 weeks this upcoming Wednesday.  He is also now a pudgy 1250 grams, or 2 lbs 12 ounces, which is exactly 1 lb over his birth weight!  He is still receiving 23 milliliters of milk through an orogastric tube every three hours which adds up to a little over 180 milliliters / day.  He remains on CPAP with intermittent nasal cannula trials twice a day.  We hope we can wean him from the CPAP over the next 10-14 days.

Our care in the NICU at UVA has been phenomenal and we could not be more pleased with Edward's progress thus far.  But like any NICU, there is a lot of.....'beeping'.  Unless one has spent meaningful time in an intensive care unit setting, this beeping can be a little bit unnerving.  Throw in the fact that your 25 week old premature baby generates much of this beeping and you might go a little crazy.  Edward, like any premature infant, makes many things alarm throughout the day.

Edward is hooked up to several monitors - three miniature EKG leads arranged across his chest monitor his heart rate.  A foil heart with a sticky underside affixes a temperature probe to his skin.  A pulse-oximeter envelopes his tiny foot and measures his oxygen saturation level and his respiratory rate.  There is some built in redundancy to this system - for example, his pulse-oximeter also measures his heart rate - just in case Edward dislodges one of these probes.  And man do these things beep.  I am pretty familiar with all these different types of beeps and it was pretty entertaining to teach Katie how to discern which beeps are 'good' and 'bad.'  The unfortunate truth is that none of them are totally good or totally bad, but must be taken in the context of the patient.

There is one aspect of Edward's prematurity that causes the most beeping and is probably the most unnerving: apneas and bradycardias, or A's and B's.  They call it apnea of prematurity and it breaks down like this: your newborn, premature child will stop breathing....but only for a few moments.  This will be associated with a precipitous drop in your child's oxygenation level and an accompanied drop in your baby's heart rate.  Your baby will also  turn from a lovely shade of salmon pink to dusky grayish-blue.  Oh and it will happen a few times a day, even when you are holding him.  And things will beep like crazy.  I have a vague memory of A's and B's from medical school, but have to admit I was not completely ready for these episodes.  And Katie......well, she hates them.....with a passion.  Fortunately, these episodes last only seconds and the nurses quickly come running to 'remind' Edward to breathe through gentle stimulation (rubbing his back or chest).   Nonetheless, it is still a challenge to see your child endure such things.  And like many things, Edward will simply outgrow these episodes.  We cannot wait for that. 

Beep.

Let the indoctrination begin.

 This the inside of Edward's Isolette (incubator).  He sees this everyday. 

Here's a video of Edward over the past 3 weeks.  The clips are roughly chronological and kind of shows his progression through the various respiratory stages: ventilator to CPAP and then to nasal cannula.  Edward has had another good couple of days - breathing well and tolerating his feeds.  He is now 1100 grams or 2 lbs 7 ounces!  He also had his first bath today during which he promptly had a bowel movement in the bath water!





I had to switch from youtube to a different video hosting website due to copyright issues with the song.....hopefully this will still work, but I do not think it will.  In the event that the blog will not properly embed the video, trying clicking this link.

One Month Old!

Edward turned one month old today!  The past 31 days have seemed to have lasted both a lifetime and split-second.  But overall, Edward's first month has gone wonderfully and we feel so blessed to have come so far.  Here is a picture of Edward raising his hands in celebration of his birthday!

In addition to turning 1 month old, Edward has hit a few other milestones over the past few days.  He is now officially over 1 kilogram!  He was born at 800 grams and dropped to a nadir of 680 grams following birth (an expected, normal drop).  With IV nutrition in the beginning and breast milk over the past 2 weeks, Edward has 'ballooned' to a whopping 1060 grams (1.06 kg or 2 lb 5 ounces).  He continues to get around 150 milliliters of breast milk every day which is actually fortified to 27 kilocalories per 'serving' via nutritional additives.

Edward has also opened both his eyes!  Depending on their gestational age, many premature babies are born with their eyes 'fused'.  Katie and I patiently waited day after day until he began to slowly open each one.  Both eyes are now wide open and actually have been so for almost two weeks.  I have been waiting to post this news because I have been trying to snap a good picture of the eyes open to accompany the post but have been unsuccessful - despite his many advances, Edward does not listen to everything I say quite yet. 

Edward has also made great strides from a respiratory standpoint.  He has been extubated for over 10 days now and remains on CPAP - a snug mask that fits over his nose and provides both a high concentration of inspired oxygen and extra pressure to keep his lungs 'inflated'.  But yesterday, Edward completed his first nasal cannula trial!  The CPAP mask was taken off and in its place two prongs were inserted in his nose.  The nasal cannula provides higher amounts of oxygen just like CPAP, but does not provide the extra amount of pressure.   Edward completed an entire hour of nasal cannula yesterday without any problems and completed another two hour trial today.  They will continue with these nasal cannula trials, incrementally lengthening them, as long as he tolerates.  The ultimate goal will be to transition to only nasal cannula and then eventually to room air!

Enjoy a few more pictures of the 'old man.'
 

The Plight of Ignaz Semmelweiss

In the middle of the 19th century, a Hungarian obstetrical resident named Ignaz Semmelweiss made the bold prediction that washing one's hands is good for patient care.  In a story well-known to modern medical students and residents (and recently recapped in one of Atul Gawande's book, Better), Semmelweiss ran a maternity clinic with a horrifyingly high maternal death rate due to what was known then as puerperal or childbed fever - especially when compared to the midwife clinic.  In his effort to improve survival, Semmelwiess realized that it was the doctors and medical students themselves who were transmitting the infections back and forth from the autopsy laboratory to the maternity clinic.  Through implementing hand washing, he was able to essentially reduce the maternal death rate to near zero.  Of course, as he was way ahead of his time, his ideas were rejected by the medical community and he was dismissed from his job.

Fast forward 150 years - Katie and I wash our hands.  A lot.  In fact, the act of seeing Edward requires a series of steps and routines to which (for both fortunate and unfortunate reasons), Katie and I have become quite accustomed.  First, gather supplies.  Camera.  Water bottle.  Breast pumping kit.  Snacks.  Camera.  Book to read.  This list goes on and on.  Then, drive to the hospital.  Luckily we live a short 10-15 minutes from the hospital.  Most parents in the NICU do not live in Charlottesville and in fact live 1-2 hours away - making visiting their children almost impossibly hard without staying locally.  Katie and I remind each other how lucky we are to live so close to such high quality care.

Then, park the car, but don't forget to get a parking pass.  Then go get the parking pass validated.  Then take the elevator to 7th floor.  Then pick up a phone stationed outside the NICU.  This phone automatically rings the NICU front desk.  From there, Katie and I identify ourselves and request permission to enter the unit.  The secretary, or hospital-unit coordinator as they are called at UVA (affectionately called HUCs) then calls the nurse on his or her unit cell phone to see if it is a good time to visit.  Occasionally, we are asked to wait 10-15 minutes if there is sterile procedure going on within the unit or if the nurse needs a few more minutes with Edward, but most of the time we get buzzed right in.

Then we wash our hands.  Quite thoroughly.  We remove all outer clothing, bracelets and watches.  They do allow for one single wedding band.  Katie often just leaves both rings at home as taking off one and leaving another does not seem like the best idea.  We approach the motion-sensored sinks, wet our hands and then slather on a heaping dose of chlorhexidine gluconate, a popular and potent antiseptic used within hospitals.  We then scrub and scrub and scrub.  Rinse.  Pat dry with paper towel.  Nearly done.

We then push the 'doorbell' of the NICU which allows the HUC to view us on a video monitor and buzz us in through a locked door.  We sign in at the HUC's desk and then finally we make our way to Edward's Isolette.  It's crazy how foreign this routine was to Katie and I just four weeks ago and how commonplace and 'routine' it has become for both of us.  The best part is, though, seeing that little guy at the end of all those steps.  Though still small, he brings us so much joy and he is worth every second of this process.

Furthermore, Edward is still doing relatively well.  He has now been extubated for over a week and is tolerating his CPAP well.  He also is still tolerating his feeds and is taking in almost 150 milliters of breast milk every day.  He seems to grow before our very eyes.  He is now 2 lb 2.5 ounces (980 grams).  He will soon be over 1 kilogram!  He has had some setbacks with some on and off signs of infection, but for now is doing well off antibiotics.  The basic plan moving forward is grow, breathe and avoid infection.  So far so good!

Two Pounds!!

In Edward's mouth sits a 6.5 French orogastric tube (in addition to a nationality, French is also a unit of measurement commonly used in medicine: 1 French = 0.33 mm).  This tube courses down his throat into his esophagus and terminates in his stomach and provides access to his gastrointestinal system as he is far too young to safely coordinate swallowing.

At birth, Edward received his nutrition intravenously mostly in the form of dextrose and lipids (aka sugar and fat).  About ten days ago, he was started on almost microscopic amounts of breast milk - 2.6 milliliters every 3 hours through this orogastric tube (for reference, a can of Coca-Cola is about 355 milliliters).  When these feeds began, we waited with bated breath to see how he would tolerate them.  The seemingly simple goal of feeding and gaining weight is amongst the most important and complex of Edward's care.   To our great satisfaction, Edward has tolerated the feeds beautifully.  He is now receiving nearly 11 mLs every 2 hours which works out to about 4 ounces/day.

Every night Edward is weighed.  Katie and I patiently await this number every day, secretly guessing what the number will be in our heads and hoping it will be higher than the last.  As with all things in the NICU, Edward's weight is a rollercoaster.  He started at 800 grams, or 1 lb 12 ounces.  Immediately following delivery, as expected, he lost a little over a 100 grams and dropped to 1 lb 8 ounces.  But since, he has started to slowly regain the weight he initially lost.  He would gain 30 grams and then lose 10.  Then he would gain 40 grams and lose 20.  Up and down, up and down.  But since Katie made the 'Hungry Caterpillar' Sign (see below post), Edward has in fact been a hungry caterpillar.  Our son now weighs in at 930 grams!!  More importantly, this works out to a gargantuan 2 lbs (and 0.7 ounces.....who am I to take anything away from him).  Though a small milestone within a marathon, Katie and I were thrilled to meet this goal.

Otherwise, Edward continues to do relatively well.  He is still extubated and is doing pretty well on CPAP.  He is still on antibiotics for an infection associated with one of his IV lines (which has subsequently been removed) and they are due to end tomorrow.  We hope he continues to do well without any further need for antibiotics.  For now, enjoy some pictures of the 'two-pounder.' 

Quick Update

Before we get to Edward's update, let me first tell you a little about Katie.  Katie is fantastic and wonderful mother - a true natural.  She has already made Eddie a 'Hungry Caterpillar' sign (one of my favorite childhood books) to encourage him to grow!

But I would be remiss if I didn't share this with you all.   Every four hours in our NICU, 'cares' are performed by the nurses.  This includes taking his temperature, changing his diaper, repositioning him and feeding him amongst many other things.  As Edward grows, the nursing staff is excellent at allowing us to be involved with his 'cares'.  It always seems that Dad gets the 'poopy' diapers and Mom gets the 'non-poopy' diapers.

Tonight was Katie's turn.  Changing a diaper in Edward's Isolette (incubator) is not exactly a breeze.  One has to navigate a temperature probe, three EKG leads, a peripheral IV, a feeding tube and a BiPAP mask which is carefully crafted around his nose to ensure adequate oxygen delivery.  Nerve-racking to say the least.  Due to the nature of my job, I am somewhat more comfortable with the medical paraphernalia.  But Katie has risen to the occasion beautifully and can change a diaper like the best of them.

But back to tonight....Katie calmly reached her hands through the ports of the Isolette, deftly manuevered around the various lines and tubes and unhooked velcro of the Pampers (size: absurdly small).  Alas, it was a 'poopy' diaper for her.  No sweat - Katie didn't even looked fazed.  Like a seasoned veteran, she calmly got the second diaper and placed it underneath the first prior to removal.....you know, just in case.  She then turned her attention back to the main attraction when suddenly Edward told us (rather abruptly and somewhat explosively) that he was not done with that first diaper.

From across the Isolette as I held Edward's hands down, I see Katie's hands quickly exit the both ports.  'Ah....she must be reaching for some extra wipes, of course' I think to myself.  But they don't reappear and I look up across the incubator expecting to see her right there.  However, Katie had jumped ship.   She was several feet away with a look comprised of surprise, fear and laughter.  Edward, meanwhile, promptly took his left heel and drove it directly into the pile of his 'creation'.  The nurse and I began laughing, barely able to finish the job until Katie was able to regain her composure to polish off the last few steps.

Oh, parenthood.

But more importantly, Edward had a pretty good day.  He remains extubated and has been tolerating the BiPAP beautifully for over 48 hours now.   He is also tolerating his feeds very well and is now on what they call 'full feeds' - which is 150 ml / kg over a 24 hour period.  This translates into roughly 10 ml every 2 hours.  And he gained some weight!  He is now 870 grams which is 1 lb 15 ounces (3 ounces over his birth weight).  This news is somewhat tempered by the fact that they found evidence of a bacterial infection from his PICC (peripherally inserted central catheter) line - a long term IV that was giving him intravenous nutrition.  Fortunately, he has been on antibiotics for several days now as they caught the subtle signs of infection early and removed the PICC line as he no longer needs it.  Clinically, Edward looks great and I think we should be able to beat the infection without much fanfare.  As they say, the NICU is a rollercoaster.  But overall, a good day for sure.  Again, thank you all for your thoughts and prayers.  Not only are they much appreciated, but they are working.

On Naming

Blur.  Delirium.  Insanity.  Life.  Many words could be used to describe those first days.  None seem sufficient, yet all seem accurate.

Perhaps Dickens was right - it truly was the best of times and the worst of times.  We were parents!....of a 25 week old.  We have a son!...who will spend his first three months in the hospital.  I am a Mother/Father!....of a child that I can neither hold nor adequately care for.  Furthermore, Katie herself was still recovering from the c-section - itself a significant surgery with its own inherent recovery time. (Let me say that Katie and I have a new found respect for all you mothers (and accompanying fathers) who have had a c-section and actually took your baby home post-operatively.  We barely got by without a newborn at home and with lots of help.  Props.)

I will defer describing the events leading up to the c-section for now as they likely deserve their own post, but will instead start with Edward's first few minutes.  Katie was supine on the operating table, cloaked in sterile drapes and slightly loopy from the conscious sedation administered.  I was stationed at the head of the operating table outfitted in a hilariously oversized blue surgical jumpsuit complete with booties, a hat and a mask with tears streaming down and thick yellow snot leaking around said mask.  Though I could not see over the surgical screen, from my obstetric days in medical school, I was able to maintain a fairly good idea of the progression of the surgery from the sharp, focused comments of the attending and resident physicians.  As I held Katie's hand, we traded both intimate and inane comments that only a completely overwhelming situation (and anesthetics in Katie's case) can produce.  Then suddenly, Edward was out.  

But it wasn't Edward yet.  We hadn't told anyone his name.  In fact, we had only just decided that day.  So more accurately, the baby was out.  He was calmly transferred from the obstetricians' hands into those of the neonatalogist's (and about 12 other people).  Within about 3 minutes of life, he was intubated and had a peripheral IV.  I could see next to nothing from my vantage point, but distinctly remember hearing the neonatalogist saying (twice!) "...and that's a cry.....and that's another cry...".  I strained so hard to hear our little son cry but could not hear anything over the operating room din.  Then they started to whisk him away to the NICU, which was located one floor below the Labor & Delivery operating suite in which we were.  The attending neonatalogist came to the head of the bed (they were still operating on Katie) to give us an update.  Truthfully, I do not remember a word he said, but remember nodding a lot and then thanking him.  He started to walk away when I stood up suddenly and yelled "Do you need to know his name?"

"Well, yes...absolutely" he replied, when in all actuality he did not need to know it at all.

"Edward Michael" I said. "Edward Michael."

I then looked at Katie.  I had originally wanted him to name him Michael Edward and call him Edward.  Katie, as a fifth grade teacher, was against calling him by his middle name as this can be a 'source confusion in grade school' (her words, not mine).  I had only acquiesced a few hours before this moment.  She smiled and said "I was worried you were going to say it the other way!"  Luckily, I had gotten it right.

And so he was.  Edward Michael.

No Need To Vent

Edward took a tremendous step forward today and was extubated!  Upon delivery, Edward was immediately intubated (placed on a breathing machine) due to the immaturity of his lungs.  He was initially on a 'conventional vent' but was quickly switched to 'the oscillator' - a type of ventilator that allows for hundreds of small breaths per minute instead of larger (and slightly more forceful) breaths at a much slower rate on the conventional vent.  In the adult medical world, the oscillator is a relatively rare form of ventilation and typically not the best prognostic indicator.  However, in the NICU the oscillator is much more common and is considered a 'gentler' form of ventilation.

For two weeks, Edward was on the oscillator, but was fortunately maintained of relatively minimal ventilatory settings.  He was actually able to make the switch back to the conventional vent last week and for the past seven to ten days, Edward's team of doctors have re-evaluated his need for ventilatory support on a daily basis.  Due to repeated concern for possible infection and the desire to advance his feeds to maximize his nutritional status, extubation was delayed day after day.

Initially, Katie was quite hesitant to have Edward extubated.   Everyone (including me) had explained to her that the ventilator was "a machine that is helping him breathe because he is too small to breathe on his own."  Now, this same group of people was talking (and excited) about removing this vital and seemingly irreplaceable part of Edward's physiology.  But after some more discussion with Edward's docs, Katie came around to the belief that 'any time off the ventilator is good time.'

Today was that day.  Finally.  Katie and I huddled around his isolette (incubator), nervously holding each others hand as Edward's nurse and respiratory therapist removed a complicated arrangement of tape, tubes and stabilizers and its in place, fitted Edward with his very own CPAP (continuous positive airway pressure) mask over his nose.  CPAP is still a mode of ventilatory support, but is much less invasive and is a big step in the right direction.  Given his young age, it is quite likely Edward will have to be intubated again, whether it be in 2 hours, 2 days or 2 weeks.  In fact, he already had to be switched to BiPAP (bilevel positive airway pressure) from CPAP this afternoon due to his arterial blood gas results which revealed he has not breathing regularly enough on his own.  Regardless of when that re-intubation occurs, Katie and I are both thrilled to have come this far with little Eddie.

Katie and I hope this blog will serve as a way to keep friends and family updated with Edward's progress without filling your inboxes or hijacking facebook as well as a way to post photos and the occasional video.  Future posts to include quick recaps of Week 1, Week 2 and Week 3 as well as smaller updates of Edward's daily progress.   We hope you enjoy following along with us and continue to ask for your prayers as they definitely seem to be working.  Though many of you have seen this, here is Edward's YouYube debut.

The Introduction

As many of you know, Katie and I were blessed with Edward Michael on January 19th, 2011 just a bit earlier than we expected at 25 weeks and weighing in at 1 lb and 12 ounces.  Since his arrival, we have been overwhelmed with the prayers and support of our family and friends and are establishing this blog to keep everyone updated with Edward's progress.

Edward, or Little Eddie, is now 2 weeks and 3 days old and has had absolutely phenomenal care so far in the Neonatal Intensive Care Unit (NICU) at the University of Virginia.  Overall, he is doing quite well but in his short two weeks, he has already experienced the rollercoaster that is the NICU with ups and downs around every corner.  We plan to use the first few posts to describe the events that brought us to this point, but first we will give a quick rundown to bring everyone up to speed. 

Brief Overview

Katie went into pre-term labor at 24 weeks and 3 days on Saturday, January 15th, 2011.  With bedrest and magnesium, we were able to delay delivery for a little over 72 hours during which Katie was able to receive crucial doses of steroids to aid in Edward's lung development.  However, Edward had made his mind up that he wanted to meet his parents early and he was delivered via emergency ceasarean section at 12:43 AM on January 19th.

The NICU team was right there with us in the operating room and promptly took charge of Edward's care the moment he was out of the womb.  He was immediately intubated and started on broad spectrum antibiotics to protect him from potentially life-threatening infections.  His first week was relatively uneventful which is exactly for what we were praying.  His second week was a little bit more 'active' with both positive steps forward and the occasional step backward.  He remains intubated on the ventilator and is finishing up is second course of antibiotics.  They started feeds about 5 days ago and so far he is tolerating them beautifully.   As we move forward, we hope that he will be able to be extubated soon and will continue to tolerate the feeds and gain weight by the day.

We also want to say thank you to all of our family and friends for their tremendous support and their many prayers so far.  We could not have gotten to this point without each of you and are truly grateful. 

Michael + Katie + Edward