Thursday, March 31, 2011


Ten weeks.  Phew.

In our wildest dreams, Katie and I never considered having to experience such a rollercoaster of emotions that we have had over the past 70 days or so.  A close friend summed up parenthood with the following:  "The 'highs' are much higher and the 'lows' are much lower" - meaning that when things are going well, the level of joy and happiness one can experience is incomparable; and conversely, when things bounce the wrong way, the depths of emotion are much deeper.  How right he was.

Overall, Katie and I would not trade for anything in the world to be where we are today.  Edward has made such tremendous progress and continues to amaze us everyday.  In fact, I think we have inadvertently forgot to post some of his major steps forward over the past few weeks.  For example, he has moved....a couple times.  The UVA NICU is a 45-bed unit, broken into 7 pods: A through G.  Pods A, B and C constitute the intensive care unit (ICU) part of the NICU, whereas Pods D, E, F and G serve as the transitional care unit - a place where the 'less sick' babies go to grow, eat and breathe.  At birth, Edward started in A-pod and spent the first 7 weeks or so there.  Fortunately, as he grew older and stronger, Edward was able to make the switch to the transitional care unit a few weeks ago!  We actually first we moved to G-pod, but then slid over to D-pod (there is no difference between D, E, F or G....just made the move for administrative purposes).  Obviously, the move to the transitional care unit represents a huge step forward.  In fact, Katie's mom asked one of the nurses what's after D-pod and the nurse replied 'Home!'.

Furthermore, Edward is out of the incubator! (You may have noticed this from previously posted pictures). At birth, Edward's body was too immature to maintain his own temperature and was thus placed in an incubator (also called an isolette) which helped him maintain a normal body temperature.  Over time, as he grew older and bigger (read fatter), his body developed the ability to regulate his internal temperature.  The NICU team slowly weaned Edward from the Isolette's warm confines and moved him to an open crib.  He seems like such a big boy in the open crib and not surprisingly, but somewhat embarassingly, we call it his 'big boy bed'. 

But not all is perfect.  As previously described, Edward has developed retinopathy of prematurity (ROP) and unfortunately it has progressed since his last eye check.  A quick recap on ROP (though hopefully no one reading this is an ophthalmalogist because my understanding is a bit fuzzy at best): the retina is essentially a thin rim of light-sensitive tissue on the back of the eye that 'receives' everything that we see and translates it into our brain.  Like all tissues within our body, the retina is supplied by blood vessels.  Typically, the development of these blood vessels occurs within the womb and thus for premature babies, their blood vessels still have some work to do.  Fortunately, the blood vessels start their development in the center of the eye where the most critical parts of eyesight are located.  The blood vessels then migrate out to the periphery of the retina to complete the development of our full line of vision.  But in premature infants, the development of these blood vessels from the center, most crucial aspects of sight, to the rest of the retina can proceed in an irregular, disorganized fashion.

When these blood vessels develop abnormally, the worst case scenario can lead to retinal detachment which can lead to blindness or severely impaired sight even if re-attached.  Fortunately, modern medicine has developed a preventive treatment for this.  Edward has progressed to Stage 3 ROP in his right eye; his left eye is largely unchanged from previous exams.  However, if he continues on his current trajectory, he will likely need laser therapy to both of his eyes sometime next week to help prevent further progression of this retinopathy.  This will entail sedating him with medications and then using a laser to 'burn' the blood vessels to halt their abnormal progression.  Fortunately, this procedure is extremely effective and is successful 90% of the time.  Unfortunately, one of the unavoidable and permanent side effects is loss of approximately 10-15% of Edward's peripheral vision.  There is also a reasonable chance Edward will need glasses as he grows up after the laser surgery as it can cause near-sightedness - but as a 'wearer' of glasses myself, I feel that glasses only add to one's overall intelligence and wit.

Edward will have one more eye exam this upcoming Tuesday to see if surgery will be in fact necessary.  There is a small chance he can avoid the surgery and we are praying fervently for this.  But at the same time, we realize that the more likely scenario will necessitate moving forward with the laser procedure.  

Edward continues to grow every day - he is now over 5 lbs!  5 lbs 6 oz to be exact.  He has officially tripled in size since birth!  Keep all the prayers coming - we are infinitely grateful for everyone's love and support so far.

Saturday, March 26, 2011

Guest Post (forgive the philly accent)

Michael has been so kind to allow me (his wife and mother of his child) to have one "Guest Post."  I know, I know.... Michael is such a good writer... blah, blah, blah...can his head get any bigger?  As I write this, he is sitting over my shoulder laughing at my typos and making snide remarks (I just asked him how to spell snide... snyde?  Teachers are not the best spellers actually). 

I have taken my computer to the hospital for six days in a row now, but have yet to take it out of the bag.  I was hoping to respond to emails from over three weeks ago, but still I am behind on replying to all of your wonderful messages!  During the day, I just hold Edward all of the time (or as much as possible in between his cares).    He is doing well, gaining weight like a champ (4 lbs 12 oz!)

He had an interesting week, full of ups and downs as the NICU saga continues. On Tuesday, he was really struggling, working too hard to breathe and they ended up giving him blood because his hematocrit was low.  I walked into the NICU to find a bunch of doctors and nurses around his crib, which is usually not a good sign and not the best thing to walk into first thing in the morning.  The nurses tried to get an IV in him four times but couldn't with him wriggling around, so he was crying and crying.  Finally, success!  He was tanked up blood (and turned a hilarious shade of pink!).  An hour later, he had his eye exam, which is quite gruesome to watch (his eyelids are clamped open with these metal clips---- it is so awful to see, and then his eyes remain swollen for the rest of the day!) and not the best news either.  Both of his eyes are still at the stage 2 retinopathy, but his right eye has progressed a little further now.  He was crying and crying again.  As a result, I was a sight to see!  Tears, snot, and many tissues later, I managed to calm down.   Then, Wednesday he was due for his two month vaccinations!  TERIBBLE!  He received three needles in his legs that were combinations of six/seven? different vaccinnations.  They totally wiped him out! He had a temperature and was crying and crying. The doctors try not to give tylenol as there is some evidence to suggest that it might affect the body's immune response to the vaccines (Michael just helped me edit this sentence, can you tell?).  Therefore, he had to tough it out!  Because of this, Wednesday night was a rough night!  He had five to seven apnea/bradacardia episodes. They had to bump him back up to 4 liters of oxygen, which is what we started with three weeks ago..... Therefore, again, I was a sobbing lunatic.  Finally, things seem to calm down for Edward and he is back to his normal self!  And they have weaned his oxygen back down to 2 liters (and today they weaned him even further to 1 liter so cross your fingers!).

Well, I have really enjoyed this opportunity to communicate with everyone.  I might even start my OWN blog....haha.   Say some prayers for his eyes and his lungs :)  NEED MORE PRAYERS!

Monday, March 21, 2011

Sunday, March 20, 2011

...of Prematurity

Premature infants face many obstacles in their first weeks of life.  For example, due to the immaturity of their brains, premature babies often 'forget' to breathe.  They call this apnea of prematurity.  During these respiratory pauses, heart rates often drop concomitantly.  They call this bradycardia of prematurity (brady = slow; cardia = heart).  Due to the immaturity of their bone marrow, many pre-term infants develop anemia (low red blood cell counts).  They call got it....anemia of prematurity.  Edward has suffered from all three of these things. 

He has gotten a few blood transfusions along the way.  The neonatalogists must walk a delicate balance of ensuring that he has enough red blood cells to deliver enough oxygen to all of his organs as they develop while not suppressing his own internal drive to make more red blood cells.  If they simply pumped him full with blood transfusions, his own bone marrow would not be stimulated to make his own red blood cells.  This past week, they checked his hemoglobin and hematocrit (laboratory measures of his red blood cells) and they were slightly low.  But not quite low enough to trigger a transfusion. As he grows, we hope that his bone marrow will continue to develop along with him and his anemia will resolve.

Since his birth, Edward has also struggled with neutropenia.  White blood cells are the cells of the body's immune system which help protect from infection.  Neutrophils are a specific type of white blood cell that are particularly important in fighting off acute bacterial infections.  When there are not enough of these types of white blood cells, this is called neutropenia.  For example, chemotherapy often temporarily wipes out these types of cells (sometimes all the way to essentially zero), which is why cancer patients receiving chemo are so susceptible to infections  Since the beginning, Edward's neutrophil count has been slightly low.  Not dangerously low thankfully, but less than the lower limit of normal.  Not terribly surprising given his prematurity, but similar to his anemia, we hope that he simply grows out of this.

Edward also gets his eyes checked on a regular basis.  He had his first check about 3 weeks ago.  What the pediatric ophthalmologist  is looking for is retinopathy of prematurity.  In a regular full term infant, the retina matures while the baby is in the womb and at birth is fully vascularized (ie all the blood vessels it needs have been formed).  In contrast, pre-term infants must complete this process of retinal vascularization outside the womb.  For reasons that are still unknown, this maturation of these blood vessels can proceed abnormally in a disorganized fashion.  This is called retinopathy.  Best case scenario, this retinopathy can totally resolve on its own.  Worse case scenario, it can lead to blindness from retinal detachment.  Fortunately, modern medicine has made the worst case scenario extremely rare. 

On his first check, Edward did not have any retinopathy at all and obviously we were thrilled.  Unfortunately, on his second exam, he had developed Stage 2 (of 5) retinopathy.  The meaning of this remains unclear because these findings can either resolve spontaneously on their own without any long term consequence or they may progress to further stages requiring treatment such as laser ablation.  For now, the ophthalmogist will come by on a more frequent basis to monitor his progression.  We are hopeful that Stage 2 will be as high as he goes!

In slightly better news, Edward is now 2 months old and he is 4 lbs 4 ounces!  He also enjoyed his first St. Patrick's Day.  I am having some technical difficulties at the moment and cannot post any recents pictures!  I will try to add some later this afternoon....sorry!

Monday, March 14, 2011

Edward has had another great week!  He continues to mark milestones and gain a few grams every day.  For example, he now is wearing clothes!  During the first four weeks or so, Edward was dressed solely in an almost laughably small pair of pampers.  A temperature probe was permanently affixed to his skin and subsequently directed the incubator to adjust its own internal temperature to keep Edward's body temp within a set range.  Over the past few weeks, he has begun to develop the ability to regulate his own body temperature and thus they have switched to a different incubator 'mode'.   This mode does not adjust itself based on Edward's temperature but instead is set at a steady temperature.  With this mode switch, Edward now gets to wear clothes to help maintain his body temperature.  In fact, Katie just did her first load of 'baby-clothes' laundry!

Edward now has a nasogastric tube in place of an orogastric tube to deliver his feeds.  A nasogastric tube courses through one of his nares, down his throat and into his stomach.  In contrast, the orogastric tube goes through the mouth, then throat and then stomach.  Since birth, Edward has had some sort of tube in his mouth, starting with the ventilator and then the orogastric tube.  But finally, his mouth has been liberated from all foreign objects (except for the occasional pacifier) and he can actually close his mouth.

Edward's main goals remain profoundly simple and complex: grow and breathe.  From a respiratory standpoint, he has graduated completely from CPAP and only receives oxygen via nasal cannula.  He has not had to use CPAP for a week (since the last post).  They are slowly titrating down the amount of oxygen delivered and we are hopeful that Edward will not have be to discharged with any oxygen at home.  From a growing perspective, Edward is, to be perfectly frank, fat - and we love every ounce of it.  He is now 1770 grams or 3 lbs 14 ounces.  Some of this weight is related to 'fluid overload' - his extremities are a little puffy and they are considering giving him a small dose of diuretic to help his body mobilize some of this fluid.  Regardless, he is growing like a weed and we could not be more pleased.  Soon, he will be transitioned to breast feeding and we will lose the crutch of the feeding tube.  Nevertheless, we will take every gram that we can get. 

Here are some recent photos.

Monday, March 7, 2011


First off, let me apologize for the dearth of posts as of late.  I finally had to return to 'real work' this past week and have been slightly busier than hoped.  Regardless, Edward continues to make tremendous progress and we are so proud of him.

He is now over three pounds!  Yesterday evening, he weighed in at 1430 grams or 3 lbs 2 ounces.  His lowest weight after birth was 680 grams, so he is now literally twice as big as he was just 6 weeks ago.  Edward is also trying nasal cannula 24 hours a day, which means he no longer needs to wear the CPAP!  Today is his first day trying this and it is likely that he will need a few hours of CPAP every now and then to take the burden off his lungs.  But still, this is a great step forward.

And most importantly, Edward is now out of the actual intensive care unit section of the NICU and has made the jump to the 'step down' unit.  He will still have the same excellent doctors, nurse practitioners, nurses and respiratory therapists, but it is a huge step in the right direction.  The step down unit is just a stone's throw from the higher acuity unit where we started, but Edward has made light-years of progress to make it this far.  All of sudden, bringing him home seems very tangible and concrete to Katie and me - an intimidating, yet wonderful thought!

Here is an updated video.  It includes a few clips from his first few days to show how far he has come.  Enjoy!