Monday, December 26, 2011

Merry Christmas

On Christmas Eve we went to the NICU to pay a visit to some of our favorite nurses.  We were able to pass out Christmas cards and say hello, knowing that some people are working over the holidays and are taking care of precious little babies.  They loved seeing the little guy in his Santa hat.  We went home, put out cookies and milk for Santa and gave Edward a bath.  He was all decked out in his Christmas pajamas. 

Our first Christmas morning together was wonderful.  I have to say though, Christmas with a little one is exhausting!  It literally took us all day to open presents from Santa!  Edward loves to take his time opening presents, ripping the wrapping paper to shreds, rolling around in it, etc.   I opened the last few presents for him.  Edward must have been a good boy this year, because our house is now filled with toys and books!  Thank you Santa!

Edward was able to go to church for the first time yesterday.  We never brought him to mass because of germs, blah, blah, blah, and Michael and I have spent the last several months taking turns watching him, while one of us goes to church.  We decided that he HAS to go to Christmas mass.  We were so excited to show off our little one in church like most normal parents do.  He wore khaki pants, a white button down shirt with a red vest.  Unfortunately there are no pictures of this outfit because he peed all over himself before we took a picture!  However, he was as cute as can be, blowing bubbles the whole time and grabbing and playing with my necklace.  In fact he was so loud that Michael had to take him outside for majority of the mass.  I sat in the pew by myself. Haha.  So much for a family experience!  But, in any case, we felt......dare I say it..... normal?   And we are grateful for that experience. 

I asked Santa to bring Edward his two front teeth for Christmas, because this teething business is for the birds!  He has been crazy and fussy with swollen gums and he has been unable to sleep/nap soundly.  Finally this week, two bottom teeth appeared, and they are sharp!  He is much happier and so are we :)  Can you believe that Santa brought Edward a toothbrush?   He is so smart and thoughtful!

 Visiting Santa at the NICU.  Yes, Santa does visit the little babies too.....  typical Edward face....
 Ugh, I don't know about this guy..........
 Help me, help me, help me! I am scared..... get me off of his lap!
 About to go to bed on Christmas eve..... leaving out cookies and milk for the big guy.....
Wait.... chocolate chip?  GIVE ME THOSE COOKIES!

Monday, December 19, 2011

Ours goes to eleven....

Eleven months ago today, Katie and I welcomed all 28 ounces of little Edward Michael.  Today, two hundred and twenty eight ounces later, he tips the scales at exactly 16 pounds.  And he is a hot mess....but for all the right reasons.  He loves bath time and splashes the water all around, shoving his soapy hand into his mouth.  He blows bubbles of saliva in our face all day long.  He has (as Katie likes to say) 'stinky farts.'  Today, he threw his first legitimate temper tantrum - crying, arching his back, snot, tears - the whole nine yards (which of course resolved within 11 seconds of picking him up).  He pulls at hair, necklaces, eyeglasses and earrings with no abandon.  Today, as an 11-month birthday present to us, he peed all over his play mat.  These 'joys' of parenthood are, in fact, true joys.  We certainly lose perspective at times and forget how lucky we are, but Edward has continued to bring us such happiness - temper tantrums and all.

Overall, Edward is doing fantastic.  He has had some ups and downs here and there, but his past few months have been marked with a significant amount of progress.  For example, he still fights his bottles a few times a week, but he loves to eat food!  For example, over the past two months, he has tried butternut squash, peas, carrots, zucchini, avocado, green beans, apples, pears, bananas, blueberries, sweet potatoes, cheese, mashed potatoes, yogurt....the list goes on.  He is not too fond of green beans and pears (a little too sweet), but he will devour his yogurt, cheese + avocado.  He has also started to develop his pincer grasp and is now able to pick up a piece of cheese or a puff and get it relatively close to his mouth before losing control and dropping it on the floor for Winston to clean up.   He also loves to sit in his booster seat and 'bang' his toys all around.  He then glances at one of us, only to drop said toy right on the ground, waiting for us to pick it up.  This cycles repeats itself ad infinitum much to his enjoyment. 

Physically, he has also continued to make strides.  He continues to receive physical therapy every two weeks.  The physical therapist comes to our house and spends an hour with Katie + Edward, first assessing Edward's recent progress and current strengths.  She then develops a new set of exercises to teach Katie as well as goals to achieve over the upcoming two weeks.  With of all of this, Edward is now able to easily roll over front-to-back and back-to-front.  He is also able to get up on 'all fours' and rock a little bit.  He has yet to crawl, but he is starting to lurch forward to try to grab a toy.  He is also sitting up quite well.  He still loses his balance and 'face-plants' (very gently, of course) onto his play mat.  But to be honest, he is plenty tough - he takes the bumps and bruises of physical development while hardly shedding a tear.  I think the tubes, IVs, and poking + prodding in the NICU toughened him up.  Certainly, for 11 months, he is behind from a physical development perspective, but if you adjust for his age, he is pretty much spot on.  We are hopeful that the next month or two will lead to crawling and that maybe by 16-18 months, we will be walking!

Thank you all for your continued thoughts and prayers.  We are sorry for not updating the blog more often.  Katie continues to nag, ahem, remind me to update it more often, but it turns out parenthood is pretty time consuming.   Furthermore, when Edward was in the hospital, due to the nature of my job, I actually had a small amount of insight into his care, felt comfortable navigating the hospital setting and subsequently was able to translate that into frequent posts.  In contrast, with fatherhood, I am pretty much clueless and insight is one of the last words I would use to describe my current faculties.  But at the end of the day, it has been pretty fun and very rewarding figuring all of this out with Katie on the fly, with advice from our parents, brothers + sisters, family and friends along the way.  As many before us have asked, what did we do before we had a baby?  .....I honestly don't remember.....

Friday, December 2, 2011

November News

Just wanted to write a quick update.  We had a great Thanksgiving with a few friends in Charlottesville.  Edward ate up some mashed potatoes and turkey baby food (smells disgusting, but he liked it!)  He managed to spill a beer by knocking it out of my hand.... twice!  He is now getting into EVERYTHING!  Whatever we have in our hands, he is grabbing at or trying to take it. A glass of water, our cell phones, food, anything! When he is playing with his toys while sitting, he practically launches himself forward trying to get something out of reach.  He is doing a great job sitting up and playing.  We are very close to letting him sit alone, I think. And he is rolling back and forth all day and starting to shimmy all about on his play mat. The last time we weighed him he was 15 lbs 4 ounces.  We are very blessed that he is gaining, growing, and enjoying eating, as we know that eating is a huge obstacle for many preemies.  We are praying and hoping this progress continues.

Basically, the month of November can be summed up by three words: leaves, bubbles, and baths!  While taking a walk one day, Michael and I were talking (kind of ignoring the baby) when Edward erupted into a full out belly jiggling laugh. Mike and I stopped walking to enjoy what we heard, but he stopped laughing.  We began walking again when he started giggling again!  We realized that he loved hearing the crunching of the leaves under our feet.  He thought it was so funny, so we tried to talk a walk everyday.  The day we tried to capture it on video, he didn't laugh as much! Of course!  Next, Edward is blowing bubbles like a crazy fool!  All day everyday, and even at night!  We hear him on the monitor talking to himself and blowing bubbles in the middle of the night.  Sometimes when we are feeding him a bottle, he will stop just to blow bubbles and dribble milk all down his face.  The drool is nonstop.  Lastly, Edward loves his bath.  I know I have said this before, but I think he would like to stay in the tub for hours!  He kicks, splashes, and squeals like a maniac!  I tried to capture everything on video, but it doesn't do it justice.  Enjoy a few clips from our daily lives!

Tuesday, November 8, 2011

RSV and Why We Are Staying Away From Everybody......

 I just wanted to write a little bit about RSV to explain why we are going to hibernate with Eddie for the next few months.  I feel like I already have cabin fever and I might go a little crazy this winter, but we feel like we have to be extra careful with him.  I found some information on the NIH's website for everyone to read.  Michael and I both had preemie nieces before Eddie was born, and we still didn't totally understand what RSV was, so we are just providing some information in case you think we are crazy parents!  Well, we ARE crazy parents regardless, haha, but..... just read it!!!  I highlighted some important points about RSV and preemie babies.  His pediatrician's office just called and his RSV synagis shots are finally here and he is scheduled to receive his 1st shot Monday, the 14th!  Woohoo!  Luckily, our insurance will cover 5 shots, and so he will receive one shot every month through March. Without insurance, the synagis shot costs about $1,500-2,000 per shot, so we are incredibly grateful that we are not paying out of pocket!  I also just want to say, please, please, PLEASE don't be offended if we do not invite you over to see him.  Please, please, PLEASE, do not be mad at us if we ask you to NOT bring your own little ones around him. And please, please, PLEASE do not think we are brushing you off and do not want to hang out with you anymore.... we do, I mean we REALLY do!  We would love to hang out with everyone, show him off, let him crawl around with other babies, drool on each other, etc.  AND believe ME, Michael and I (especially me) would love some more adult interaction!  We just know that this is temporary, and we have to keep him as healthy as possible during this flu season.  Next year, we will be throwing him in the mud......

Love Always,

Katie, Michael, and our little banana!

Respiratory syncytial virus (RSV)

RSV; Palivizumab; Respiratory syncytial virus immune globulin
Last reviewed: January 24, 2011.
Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups.

Causes, incidence, and risk factors

RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections most often begin in the fall and run into the spring.
The infection can occur in people of all ages. The virus spreads through tiny droplets that go into the air when a sick person blows their nose, coughs, or sneezes.
You can catch RSV if:
  • A person with RSV sneezes, coughs, or blows their nose near you
  • You touch, kiss, or shake hands with someone who is infected by the virus
  • You touch your nose, eyes, or mouth after you have touched something contamined by the virus, such as a toy or doorknob.
RSV often spreads very rapidly in crowded households and day care centers. The virus can live for a half an hour or more on hands. The virus can also live for up to 5 hours on countertops and for several hours on used tissues.
The following increase the risk for RSV:
  • Attending day care
  • Being near tobacco smoke
  • Having school-aged brothers or sisters
  • Living in crowded conditions


Symptoms vary and differ with age. They usually appear 4 - 6 days after coming in contact with the virus.
Older children usually have only mild, cold-like symptoms, such as cough, stuffy nose, or low-grade fever.
Infants under age 1 may have more severe symptoms and often have the most trouble breathing.
In general, RSV symptoms include:

Signs and tests

Many hospitals and clinics can rapidly test for RSV using a sample of fluid taken from the nose with a cotton swab.


Antibiotics do not treat RSV.
Mild infections go away without treatment.
Infants and children with a severe RSV infection may be admitted to the hospital . Treatment will include:
  • Oxygen
  • Moist (humidified) air
  • Fluids through a vein (by IV)
A breathing machine (ventilator) may be needed.

Expectations (prognosis)

Rarely, RSV infection can cause death in infants. However, this is unlikely if the child is seen by a health care provider in the early stages of the disease .
More severe RSV disease may occur in the following infants:
  • Premature infants
  • Infants with chronic lung disease
  • Infants whose immune system does not work well
  • Infants with certain forms of heart disease


In young children, RSV can cause:
Children who have had RSV bronchiolitis may be more likely to develop asthma.

Calling your health care provider

Call your health care provider if breathing difficulties or other symptoms of this disorder appear. Any breathing difficulties in an infant are an emergency. Seek medical attention right away.


A simple way to help prevent RSV infection is to wash your hands often, especially before touching your baby. It is important to make certain that other people, especially caregivers, take steps to avoid giving RSV to your baby.
The following simple steps can help protect your baby from getting sick:
  • Insist that others wash their hands with warm water and soap before touching your baby.
  • Have others avoid contact with the baby if they have a cold or fever. If necessary, have them wear a mask.
  • Be aware that kissing the baby can spread RSV infection.
  • Try to keep young children away from your baby. RSV is very common among young children and easily spreads from child to child.
  • Do not smoke inside your house, car, or anywhere near your baby. Exposure to tobacco smoke increases the risk of RSV illness.
Parents of high-risk young infants should avoid crowds during outbreaks of RSV. Moderate-to-large outbreaks are often reported in the local news and newspapers to provide parents with an opportunity to avoid exposure.
The drug Synagis (palivizumab) is approved for the prevention of RSV disease in children younger than 24 months who are at high risk for serious RSV disease. Ask your doctor if your child should receive this medicine.


  1. Committee on Infectious Diseases. Modified recommendations for use of palivizumab for prevention of respiratory syncytial virus infections. Pediatrics. 2009;124:1694-1701. [PubMed: 19736258]
  2. Respiratory Syncytial Virus. In: Mandell GL, Bennett JE, Dolin R, eds. Principles and Practice of Infectious Diseases. 7th ed. Philadelphia, Pa: Elsevier Churchill Livingstone; 2009:chap158.
  3. Cincinnati Children's Hospital Medical Center. Evidence based clinical practice guideline for medical management of bronchiolitis in infants less than 1 year of age presenting with a first time episode. Cincinnati (OH): Cincinnati Children's Hospital Medical Center; 2006 May. 13 p.
  4. Mcintosh K. Respiratory syncytial virus. In: Kliegman RM, Behrman RE, Jenson HB, Stanton BF. Nelson Textbook of Pediatrics. 18th ed. Philadelphia, Pa: Saunders Elsevier;2007:chap 257.

Review Date: 1/24/2011.
Reviewed by: Neil K. Kaneshiro, MD, MHA, Clinical Assistant Professor of Pediatrics, University of Washington School of Medicine. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
A.D.A.M., Disclaimer

Friday, October 7, 2011

Go Phillies!

Michael was not involved in this photo shoot.  It is unfortunate that he is a loyal Braves fan.  He is unaware that I am posting these pictures!  I think later in the day I might have some explaining to do.  Go Phillies!

Monday, October 3, 2011


Soooooooo while I was shopping two months ago I saw this little giraffe sitting on a shelf in Babies"R"Us.  It struck me that I have seen this silly little toy in millions of pictures with little babies on Facebook, yes Facebook.  No one (including me) is shy when it comes to publishing adorable baby pictures online, especially when you think EVERY picture of your little one is the cutest!  I realized that I have seen "Sophie" the famous giraffe in many baby pictures this year.  I thought, why not?  Edward needs to have Sophie the giraffe too!  When the cashier scanned Sophie, I learned that she was $22!  For this silly little rubber giraffe?  Are you kidding me?  Well, okay then.....  I'll take it!  As I drove home I thought, Edward, you better LOVE Sophie!

To my dismay, Edward barely looked at Sophie the first month.  I tried to put Sophie in his hands and he would simply drop her.  I would stand Sophie up right in front of him, and he would look away and reach for another toy.  I was pretty disappointed, until about three weeks ago he started to bite her foot.  Hooray, I thought!  FINALLY!  And he still has not put her down!  Sophie can keep Edward occupied for hours!  And she helps us distract him when we have to give him his awful tasting medicines.  And she is helping his little gums feel better because he is teething!  Sophie, you were expensive, but we love you!

Monday, September 26, 2011

A VERY Hungry Caterpillar

September has been another great month for Edward.  We just returned home from the pediatrician's office for his 8th month visit and this was the first time I wasn't nervous about the weight check.  I just knew he had gained weight because he is eating food like it is going out of style and draining 5 oz bottles like we have never fed him before.  So far he has tried cereal, bananas, apples, squash, sweet potato, avocado, and carrots.  I think tomorrow we will try green beans!  I love, love, love making Edward's food using the Baby Breeza steamer/blender.  It actually is easier than I thought it would be.  I only chop the fruits and vegetables and hit a few buttons, and like magic, I have food for Edward for the week.  Today he weighed 13 lbs 5 oz and was 24 inches long. 

He does have his 1st cold, which has made me a little more worried about germs, since cold and flu season is around the corner.  He woke up Friday coughing and sneezing with a running nose.  We are hopeful this cold will just leave this house as soon as possible, as Michael and I were both sneezing and feeling a little under the weather too.  We are using the salt drops making Edward do a lot of tummy time to drain the excess junk out of his nose.  The doctor checked his lungs and his lungs sound clear.  He does have some upper airway congestion, and we were told to just keep doing what we are doing.  He did receive his first of two flu shots today, and we are anxiously awaiting the arrival of his RSV vaccine.  The shots should become available in November and he definitely qualifies to receive the shot because of his birth weight and gestational age.  The shot won't prevent him from getting RSV but it will help lessen the severity of the symptoms.... hopefully.

In other news, Edward slept through the night! Woooohoooo! And then the very next night he woke up twice, and drank two bottles.  Little stinker!  We definitely do not mind waking up to feed him, because he promptly falls right back to sleep after the bottle, so we can't complain. And he was sleeping in his big boy crib in his own room, until, that is, he starting sneezing and coughing from this cold.  He is back in the bassinet next to us for a little while longer :) or until he turns five.....

Edward loves working with the physical therapist.  Jen has taught us so many exercises to strengthen his neck muscles.  He has made so much progress in only a month's time.  He has started rolling over from his tummy to back!  He used to hate tummy time, but now that he has learned to roll over, he knows how to get out of doing it.  He is smart, just like his.......... (I will let you fill in the blank!)
 We have learned that Edward needs/wants to be held from 5:00 p.m. - 6:00p.m.- his fussy time, so we decided to put him to work.  He likes to make dinner with us!
 The almost finished product about to go into the oven- no he has not tried pizza yet!
 Cutest outfit for the fall....... of course, anything with a matching hat just makes my heart melt!
 He is getting chunky legs!
 Sitting up in his bumbo chair. 
 Gooooooooooooooooo Irish!  No turnovers........ please?
 In his beach tent during our vacation earlier this month in Kiawah, SC.
 Hanging out on the back porch, enjoying all of the new things to see.
 With Dad, on our evening walk!
Poolside! Picking up the ladies already :)

Monday, September 12, 2011

Funny Faces

                                              Wondering why I put him down to sit by himself......
                                             A little scared........
                                          Saying to himself, "This is stupid........."
                                            Blowing bubbles.............

Edward is really starting to develop his own little personality.  He is starting to squeal louder and louder when we play and he is now interacting with us more each day.  He can melt our hearts with his funny faces!  He is now 12 lbs 9 ounces!  We can't believe how big he is getting.  He tries to hold his bottle during feeding times and recently started drinking 5 ounces at a time.  Tonight he is going to sleep in his crib...... in HIS room...... NOT in the bassinet next to our bed..... any guesses on how many times I will get up tonight and walk into his room to check him? 

Sunday, August 28, 2011

Singing Out Of Tune!

August has been a wonderful month for the Johnsons!  Edward has been growing like a weed!  Last week at his 7 month visit at the pediatrician, he weighed 11lbs 14 oz!  He has been drinking 4 ounces consistently and is enjoying his oatmeal cereal each day.  We received the green light from the pediatrician to go ahead and try other foods and today he tried bananas.  I cut a banana in half and mashed it until my arm hurt, and finally it looked similar to store bought baby food.  I am not sure if he liked it, or if he was just smiling because I kept singing, "It's bananas! B-A-N-A-N-A-S!" This is Katie by the way, although Mike does his fair share of singing weird things to the baby.  Michael called home from the hospital one day and said, " I have that stupid Raffi song stuck in my head!"  Yes the singing in this house has reached new levels.

Michael, Edward and I were able to meet up with two of Eddie's NICU friends.  Eddie didn't even know he had these friends, but I became close with two other NICU moms during our hospital stay, and we vowed to have lunch one day and hang out OUTSIDE of the NICU.  And so Eddie was able to meet Sam, a former 26 weeker, and Gretchen, a former 23 weeker.  They enjoyed each other's company and I think Eddie and Sam will one day fight over who will date the adorable Gretchen.  We talked about what crazy baby music we all used at home.  Laura said that Sam really likes AC/DC.  We said we wished Edward liked other artists but he is really hooked on Raffi!  We talked and laughed until all three babies were crying and ready to leave.  It was a great experience all around for our three families as we shared stories as crazy new parents, and reminisced over our NICU memories.  We all decided that we definitely do not miss the NICU, but we did miss our NICU friends.

Edward starts physical therapy tomorrow but is making great progress already.  He is sitting nicely in his high chair and is working on sitting up in his Bumpo chair.   He is getting awfully close to rolling over and loves kicking and squealing during playtime on his jungle mat!  Most of all though, he LOVES his bath! 

Here is a video of a few of our favorite moments from the past few weeks.  It is of course accompanied by the critically acclaimed Raffi.  I don't think Raffi was nominated for any video music awards this year, but there is always next year, right?


P.S. Eddie survived his first earthquake and his first hurricane!  What a week!

Monday, August 8, 2011

A Month of Firsts

After a somewhat tumultuous June, we finally entered the month of July.  Simply put, it was a month of firsts.  As you might recall, Edward was having significant difficulty with feeding and subsequently weight gain.  We had tried various combinations of medicines, bottles, nipples, formula, positions, etc, to no avail.  Several pediatrician visits, a barium swallow, a change in our medications and a pediatric gastroenterologist appointment later, I think we might have finally made some progress.  Gone is the constant fussing and fighting with every bottle and in its place is a happy, calm baby taking a solid 4 ounces with every feed, five times a day.  Don't get me wrong, he still fusses and cries during feeds, but nothing when compared to the previous extent.  His weight gain has been steady as well.  In fact, he is nearly eleven pounds (10 lbs, 13 ounces to be exact)!

So on to Edward's firsts.....

We started out the month venturing out of the state of Virginia for the first time.  We visited my family down in Augusta!  Edward had a great time meeting his great-grandmother, aunts and uncles and cousins.

                                                          Edward with his Papa Johnson

                                                      Edward with Mom and his Granga

Edward also now sits quietly for our regular book readings.

                                                        10 Minutes till Bedtime!!

Edward is also finally nearly as big as his hungry caterpillar!

                                              As you can see, he has come a long way.

Edward also received his first Notre Dame onesie!

                                                                         Go Irish!

Edward also visited Katie's family in Ocean City, New Jersey and got to meet even more aunts, uncles and cousins!  He even made it to the beach!

Even this past week, he got to ride on his Daddy's shoulders for the first time.

                                                  Katie was barely able to breathe for this

Edward even got to try rice cereal for this first time.  He liked....having it on his face.

And yesterday, he walked!!!  Haha, just kidding, he can't even roll over yet.....  Overall, July was much more enjoyable than June and we can't wait to see what August will bring us. 

Sunday, July 17, 2011

Quick Update

As Katie mentioned in the last post, Edward had a barium swallow study completed on Thursday.  Fortunately, the swallow study was completely normal.  At the same time, a normal study did not do much to shed light on our current feeding issues.  Edward continues to gain weight, just at a rate slower than he should.  He is still fighting most of his bottles, so we are set to see a pediatric gastroenterologist on Thursday.  He has finished his course of empiric antibiotics and remains on prevacid and zantac (two medications to help treat reflux).  Hopefully, the appointment later this week will bring some answers!  Here are some recent pictures of the little man.

As you can see, he hardly has anything with which to play.

Wednesday, July 6, 2011

Formula for...Success?

Happy 4th of…..

Wait a minute…. It’s July? Oh. My. Word. Where has the time gone? We have been riding to roller coaster of Edward ‘s home life, which we decided is just like our ride in the NICU, up down, up down…..and now hopefully up? The month of June consisted of at least 7 trips to the pediatrician, 5 different prescriptions, 3 different formulas, and a partridge in a pear tree. Well at this rate, it will be Christmas before we know it and I will still be in my pajamas. Edward started out the month of June eating like hungry caterpillar. As time went on, his weight gain dwindled until he actually stopped gaining weight, and at one point, lost weight. This loss, though, was no surprise to us because every single bottle we tried to give him became an all out war at home. He would be so hungry take few sucks, drink an ounce and then scream, cry, arch his back, swing his arms in protest and try to wiggle himself out of our arms. Our sweet happy boy turned into a little maniac every time we tried to feed him. He actually whacked himself in the face one day when he was flailing his arms, and then after that cry fest, he refused to drink anything at all.

Well, upon first exam, Edward had thrush. Thrush is a fungal infection of the mouth. It is a common infection in the very very young (babies), the very very old, and those with weakened immune systems. Everyone has a small amount of this fungus in their mouths and your body keeps it in check. When your immune system can not keep the organism in check, it takes over and grows out of control, resulting in a white tongue, and sores on the roof and gums in the mouth. Many babies do not require medication, unless it causes the baby to resist eating – which would be the case for Edward. We were given a 10-day course of Nystatin. Great, sticky, yellow, gross stuff to squirt into his mouth – 3 times a day! That was fun. The first few days Edward perked up and started drinking again. High fives all around, we have our little guy back! He started drinking 3 oz again without a problem, and he even started drinking more than that sometimes. With only a day left of the Nystatin we noticed Edward started fighting us again. Slowly he was turning back into the little angry maniac. Was this a fluke? He still had the white tongue. Was the thrush not going away? The recommendation had been to boil all of the bottles, nipples, pacifiers he used each day to kill the thrush. We went a step further by throwing everything out and buying brand new stuff. We were going to Babies-R-Us more than we were going to the grocery store. Still it didn’t work… back to the doctor! We were given a second medication to treat the thrush, a stronger mediation. After a few days of Flucanozole (only to be given 1x a day- whew), Edward perked up again! Hello 3 oz bottles! He was drinking like a champ, and we were rejoicing again! Wouldn’t you know it, just as we were finishing up the last of 10 days of Flucanozole he started to fight us again. We couldn’t believe it. Back to the doctors! It must be reflux now because the thrush is gone, start the Prevacid. Oh, and this medication is a fun one to give to a newborn. Take a solutab and dissolve it in 3-4 ml of water, draw it up in a syringe, and shoot it into his mouth making sure he doesn’t spit out the nasty granules. Oh, and do it 30 minutes before giving a bottle which subsequently leads to him not actually wanting to take the stupid bottle. After five days on the Prevacid with no improvement we were forced to go back to the doctor. This time, another pediatrician thought, wow, something is really bothering him. She watched Mike try to feed him and saw him push Mike away, cry, arch his back (Thank you Edward for actually doing that, because if you got stage fright and didn’t fight the bottle, we would have been known as the craziest parents in the office). She also thought that besides the reflux, his breathing was terrible. His lungs sounded clear but he sounded junky. He always was a heavy breather, but his wheezing had gotten out of control. Could he have sinusitis? Who knows? So now Edward is on Prevacid (1x a day) and Zantac (2x a day) for reflux and amoxicillin (2x a day) for a possible sinus infection. So out of the 7 feedings he gets a day, Edward has to take medicine before 5 of them…. Awesome. The pediatrician also ordered a swallow study to be done at the radiology department at UVA hospital. She wants to make sure everything is anatomically in place for him to be swallowing and eating. No, she said, his fighting us, is just not normal.

We apologize for not keeping up with the blog, but you can tell why. Not being able to feed to the little guy has been frustrating and heavy on our hearts. The worst part would be that as soon as we would stop trying to feed him, he would turn back into his happy self, smiling and playing with us. Edward, do you still love us? No wonder he didn’t want to eat…. his tongue was hurting from the thrush, the reflux was causing burning in his tummy and throat, and the sinus infection was making it hard for him to breath. Duh! If only he could talk and tell us what is wrong! Hopefully the swallow study will show that everything is working correctly and the triple threat of medicine will start to kick in. Goodbye June, I hate you.

Friday, June 10, 2011

Edward at Home

Here's the latest video of the little man - he is 8 lbs 10 ounces!

Sunday, June 5, 2011


When we were discharged from the NICU, we were offered many differing opinions on how to acclimate Edward to our lives at home and how to keep him safe from….. you guessed it…. germs!  Basically, because of Edward’s prematurity he is more susceptible and less able to fight off infections.  Because Edward was born so early, so little, and required the ventilator to breathe, he has chronic lung disease.  Chronic lung disease basically means that his lungs have some scarring and damaged tissue.  His lungs should be healing a little bit every day, but it takes time for the new healthy lung tissue to outgrow the damaged lung tissue.  The doctors and nurse practitioners were very frank with us: a small, common infection could land us right back in the hospital - especially because of his chronic lung disease, upper respiratory infections can wreak havoc on his body.  At the same time, the doctors and nurses told us that we still can not prevent him from ever getting sick, and we certainly should not try to create some sort of boy in a bubble complex.

One thing that was reiterated was that Edward was coming home at the best possible time, after flu season.  They told us, get out of the house!  Go on walks with him, go to dinner and sit outside, do things with him.  Don’t keep him in the house!”  So we pressed the doctors with more questions.  We asked about people touching and holding him, we asked about family events and large parties.  Again, we heard differing opinions, but we also heard a few commonalities:  he is not a baby that should be passed around (just yet!).  He should not be held and kissed on by every person we see, every relative who wants to hold him, and every weird stranger who glances at him in the stroller.  Bummer! Because don’t you just want to kiss and pinch his chubby little cheeks?

Another thing we heard was, hand washing, hand washing, hand washing.   It will be no different than the NICU, I am afraid, but honestly hand washing is a simple thing to do in our eyes to keep him safe.  We wash our own hands all day long at our OWN house.  In fact, we have a giant bottle of Purell on our living room table, one bottle in the kitchen, and one bottle on his changing table (not to mention we have about 10 travel size bottles in the diaper bag).  I, like a new overly panicked mom, also bought a little sign for his stroller, that basically says, “Don’t touch me with your dirty hands!”  Haha, well, it doesn’t exactly say that, but, pretty close.  Michael rolled his eyes and teased me a little bit when I ordered this thing online, but it will help keep strangers from touching him.  The sign will hopefully prevent people from touching his little fingers.  I know many people do not mean it, but touching a baby’s fingers is not exactly the best thing to do, especially since Edward has found his hands, and likes to shove his hands in his mouth when he is hungry. So yes, you too can roll your eyes at me and this silly sign that will be on his stroller, but it makes me feel better! 

Still, the spectrum of recommendations continued.  “No church or grocery stores for a year,” some nurses/ doctors would say.  And other physicians stated, “That’s ridiculous.”  We heard, “Absolutely no daycare,” and then in the same breath, “Well if you have to go back to work, you have to go back to work.”  And so we listened and listened and still had to ask ourselves what to think?  What to believe? What to really consider?

In light of all of the advice, we still have to make our own decisions and feel comfortable about our choices.  Our first major decision was that I should stay home with Eddie for a while. Since it has been officially approved, I can now say that I will be taking a leave of absence from teaching next school year.  I am so grateful to be able to do this and hopefully, this will allow Edward the extra time that he needs to grow bigger and stronger.  I will have busy days ahead of feeding him, doing physical therapy with him, and taking him to many doctor appointments. We are so grateful for all of the love and support that we received from all of my coworkers at Mary Carr Greer Elementary School. Eddie might be a hungry caterpillar, but he is also a Greer Gecko!   I will definitely miss my 5th graders and my friends, but Eddie’s health and well-being is our top priority. Avoiding daycare germs during his first year seemed liked an easy decision.

Another thing that we decided is that we might have visitors over from time to time, but mostly we would rather meet people outside, like on walks, or out to dinner.  We will take advantage of the great weather and enjoy as many open-air activities as possible.  We need to get out of the house now, because the fall and winter months will bring about his first dreaded flu season.  He will be especially at risk for RSV.  He should qualify for the vaccination this fall, but I imagine we will be spending more time in the house during the fall/winter. This just means Edward will have more time to watch Notre Dame football with us!

And lastly, hand washing.  Don’t be offended if you do come to visit us, either at the house or outside somewhere, and we shove some Purell in your face.  It’s not that we think you’re a dirty person, but hey, you might be!  Just kidding.  We are just trying to minimize the chance of infection for Edward.  We know that Edward will eventually get sick, but we are going to try our best to keep him healthy this first year as he develops into a big strong boy!   We love, love, love all of the UVA doctors, nurse practitioners, and nurses who cared for Edward, but believe me, we do not want to go back to the hospital ANY time soon!

Eddie has healed from the last surgery and he is keeping down his food… thank goodness!  He is now consistently drinking 2 -3 ounces every feeding!  We will see his pediatrician for another weight check on Thursday, but his last weight was 8 lbs 8 oz!  We also saw the opthamologist this past week and both of his eyes look wonderful.  His laser eye surgery was a success and the retinopathy has totally resolved.  The eye doctor was so happy, that we don’t have to see him again until September.  At that next appointment we will determine how nearsighted Edward might be, and talk about the possibility of glasses, but we will cross that bridge when we get there.


Friday, May 27, 2011

Week Three

All babies spit up.  He is making wet diapers.  He is gaining weight.  He seems fairly happy and content.  These are some of the various statements I kept repeating to myself and to Katie as we progressed through our third week at home in an effort to make ourselves feel better.  As previously mentioned, Edward had started to spit up somewhat frequently and it seemed to be getting worse instead of better.  Still, the above statements were true.  He was gaining weight consistently and continued to make wet diapers - essentially the two goals of feeding.   But it seemed like we were fighting tooth and nail to get every milliliter of breast milk in him and to keep it in.

Reflux is a common problem in babies and especially in premature babies.  For reasons that are unknown (at least to me), the lower esophageal sphincter (LES) tends to intermittently relax allowing gastric contents to reflux retrograde back into the esophagus.  In other words, the feeding tube leading to the stomach (the esophagus) is separated from the stomach by ring of muscle that acts like a valve (the lower esophageal sphincter).  When you swallow, that valve opens up allowing food content to pass into the stomach.  That valve then closes and what you eat spends some time in the stomach being digested and churned about.  Then, another muscular valve at the end of the stomach (the pyloric sphincter) acts as the exit valve that allows food content to pass into the intestines.  Reflux occurs when the first valve between the stomach and esophagus inappropriately opens up.  In adults, reflux is typically caused (or at least made worse) by acid over-secretion -  which is why antacids and acid reducers are the mainstay of treatment for heartburn.  In newborns, acid over-secretion can be a contributing cause for sure, but the issue is generally more mechanical due to the floppiness of the muscular valve.  Regardless of its cause, reflux in a newborn can wreak havoc on their feeding and subsequently on their growth and development.  It can also wreak havoc on the parents as each feed seems like an interminable battle that is painful for both parties involved.  Edward seemed to be getting progressively fussier and fussier by the day.  We were afraid that we were doomed to a long struggle with reflux.

We kept the faith though, pressing on with bottle after bottle.  Then things changed.  The night before we had two follow-up appointments, one with our pediatric general surgeon who did the bilateral hernia repair in the hospital and the other with our regular pediatrician, Edward took a great bottle of nearly two ounces!  Maybe we were starting to turn a corner!....but alas, he spit up again.  But this was a little different.  It came out forcefully and had some pretty good distance to it.  Then he did it again later than night.  Hmmm......

Our first appointment was with the pediatric surgeon.  I was not able to join Katie and Edward for this appointment, but as Katie was describing Edward's symptoms, the surgeon mentioned the possibility of pyloric stenosis.  As mentioned above, the pylorus is the exit valve of the stomach, a muscular ring that can contract and relax as needed.  Pyloric stenosis is abnormal hypertrophy (enlargement) of that muscle which then does not allow food to pass into the intestines and causes back up into the stomach.  Pyloric stenosis is classically associated with two things:  projectile vomiting and an olive-sized mass in the epigastrium (just above the belly button).  Edward was starting to projectile vomit, but only intermittently; furthermore, many of his symptoms seemed like reflux.  The surgeon carefully examined Edward's abdomen for the "olive" but it was nowhere to be found.  The surgeon asked Katie if Edward had thrown up anything green or brown.  Nope.  It was all milk so far....though some pretty malodorous stuff - even his burps smelled particularly foul.  Well, the surgeon said, this could be pyloric stenosis but it is not definitive - let me know if it gets worse!

I left work early that day to join Katie for the pediatrician appointment scheduled for that afternoon.  We fed Edward one more bottle before the appointment right around noon.  Sure enough he spit up again, but this was no ordinary spit up.  This hit Katie's chest with such force that it caused back splatter onto Edward.  Furthermore, it was coffee grounds.  In the adult world, coffee ground emesis is another classical description and typically portends something fairly serious.  Vomit becomes coffee ground in quality in presence of upper gastrointestinal bleeding which allows blood to be exposed to gastric acid, leading to the oxidization of iron molecules found within the blood cells.  In Edward's case, he was likely bleeding for one of two reasons:  either he had gastritis which is irritation of the lining of the stomach or he had something called a Mallory-Weiss tear, which is a small mechanical tear in the mucosal lining at the junction of the esophagus and stomach secondary to repeated vomiting

To put it lightly, Katie was beside herself and I was pretty concerned myself.  We considered going straight to the ER, but since our doctor's appointment was in 15 minutes we decided to start with that.  Our pediatrician was also quite concerned, but again he could not feel any evidence of pyloric stenosis on exam.  Furthermore, there were many other potential causes of Edward's symptoms, some serious and some not so serious.  So, he called the surgeon who we saw that morning and they decided to send us to the main hospital for an ultrasound that afternoon.

Katie dropped me off and I took Edward to Radiology while she ran home to get some essentials in case we were in the hospital all afternoon or evening figuring all this out.  I sat in the Radiology waiting room with Edward in my arms - he was getting pretty lethargic from all the vomiting and lack of nutrition.  And even though we had not fed him anything for a few hours, he spit up again all over me.  Dark brown stuff - the poor little man! His eyes had this glazed over look and he seemed so worn out.  "He spent 3 long months in the NICU only to come home to this!" I thought to myself.  I have to admit that was one of the lowest points for me throughout all this whole process.  Finally, soon after Katie arrived, they called us back into Ultrasound.  While we were waiting, I confessed to Katie that I was actually hoping for pyloric stenosis.  There were other possibilities that were more serious (intussusception or volvulus) or less treatable (such as reflux) and I was worried the ultrasound would be totally normal.  Then we would be left with this poor baby who seemed miserable, vomiting all the time and two parents who were equally miserable and close to wits end. 

Then finally, we got the results:  Pyloric Stenosis!  As strange and as counterintuitive as it seems, I was overjoyed!  We had a diagnosis! .........So now what?

Monday, May 16, 2011

All Babies Spit Up....

After being home for almost a week, my mom innocently asked "How much is Edward spitting up?"

 "None!" I happily replied.  And it was true.   The first five to six days at home, Edward did not spit up once.  He was still learning to take bottles and was not taking large volumes, but sure enough he had not spit up a single time.  In fact, throughout his entire NICU stay, I think he only threw up 2-3 times total.

We were overjoyed with our luck!  Then lady luck looked the other way.  Edward was pretty gassy and somewhat fussy after most of his feeds, but then he started to spit up.  Not a lot at first and not with every feed, but it was fairly consistent throughout the course of a day.  We started holding him upright for over an hour after every feed in case there was any element of reflux and hopefully decrease the amount of 'spit-up'.

One night, after a feed and holding him for about 90 minutes, we placed Edward in his bassinet next to our bed.  Ten minutes later, "BLEH!"  with vomitus going through the bassinet and onto the side of our bed.  It wasn't always quite that bad.  Mostly, he would take his feed, fuss for a little bit and then spit-up some white curdly stuff that wasn't very pleasant to smell.

Similar to the amount of breastmilk that he was actually taking in, these episodes of emesis were a cause of great discussion and angst.  I downplayed it at first, reminding Katie that 'all babies spit up,' which of course is true to some extent.  But despite repeatedly asking my opinion on various issues, Katie does not believe a word I say anymore....and I can't say that I blame her.  I have learned that it is impossible for me to simultaneously play father and physician.  Objectivity goes out the window when it is your own family.

Despite of all this, Edward still gained weight at our next pediatrician appointment!  In fact, he gained almost 7 ounces (nearly an ounce a day)!  Our pediatrician was thrilled and we were extremely pleased to have achieved such a significant weight gain.  But it seemed like we were killing ourselves to accomplish this.  Every feed was a battle and often ended in a change of clothes for Edward and one of us.  At the same time, the weight gain was so encouraging - clearly we were doing something right.

Then, week three happened....

Sunday, May 15, 2011

Where to begin.....

We apologize for the dearth of posts recently - having a new baby at home is slightly time consuming.  I am not sure if anyone is still following along, but figured we would send out an update just in case. many of you know, we brought the little man home 3 weekends ago.  It has been an absolute joy to have him home with us after such a long course in the NICU.  At the same time, Katie and I are first-time parents struggling with the adjustment of having a 'newborn' at home.  To put it lightly, we are a little nervous and anxious.  As many first-time parents before us have done, we scrutinize Edward's every move.  Every cough, burp, grunt, pee, poop, spit-up, feed, etc is carefully discussed and analyzed.  No stone goes unturned.  The combination of being first-time parents and starting off with nearly 100 days in the hospital has greatly skewed Katie's and my ability to determine what is "normal baby behavior" and what is pathologic.  This makes for many "interesting discussions" between the two of us.

To be honest, Edward left the NICU in phenomenal shape.  He did not require any supplemental oxgyen or any apnea monitors.  His only medication was a thoroughly disgusting multivitamin to be given only once a day.  As with many NICU babies, his biggest issue was feeding.  In the hospital, we had an attending neonatalogist, multiple nurse practitioners, ICU nurses, a nutritionist, a lactation consultant and a speech pathologist all helping us coordinate Edward's feeds.  Upon discharge, he was just developing his ability to take bottles, but enough so to be able to go home.  Once at home, his feeds were obviously up to only Katie and me.   A daunting task to say the least.  The basic tenet was for us to feed him every 3 hours or so and make sure he is making wet + dirty diapers regularly.  If we accomplish this, he should gain weight! Simple, right?  Well, Edward didn't make it quite that easy.

Week One
As previously mentioned, Katie and I spent the first week obsessing over our every decision and perseverating on the exact amount of breast milk he would take in with each feed.  We (read Katie) kept a strict log of his daily intake, recorded to milliliter.  Sometimes, he would take 30 mL, sometimes 45.  Then he would only take 20.  Then 40!  Then 15.  Then 45 again!  Back and forth, back and forth.  This variation caused great consternation.  Still, he seemed to be making wet diapers regularly, so we pressed on, keeping the faith.  Forty-eight hours after discharge, we had our first pediatrician appointment for a weight check.  Driving to the doctor's office, both Katie and I shared our trepidation of finding out if had gained weight and confessed a likely sense of failure if he had not.  

Once at the pediatricians, the nurse directed us to the intake area and had us lay Edward down to undress him on a scale ......a scale straight out of the 1890s - the type of scale with the movable weights across the top that looked about as accurate as throwing darts.  You should have seen the look on Katie's face.  In the hospital, a difference in weight as small as 5-10 grams could be detected.  Much to our relief, the actual, digital scale was nearby and the scale on which we were only functioned as a changing table!  Whew.  Then the actual weigh in occured.  I am not sure if any of you watch the Biggest Loser on TV, but as the nurse laid Edward, naked as a jaybird, on the digital scale and the numbers started calculating, I felt like we were on that show.  Seconds felt like hours, but finally the scale settled out and he had gained 15 grams (half an ounce)!  Not a huge gain, but more importantly, it was not a loss!  We were so relieved.  We continued on with our current plan and had another weight check 3 days later.  On that visit, he gained 75 grams (2.5 ounces)!  He was up to 6 lbs 13 ounces!  Again, another huge relief.  Maybe we were finally getting a hang of this whole parenting thing....then weeks 2 + 3 happened.

To be continued.....

Sunday, April 24, 2011

Hallelujah, He's Home!

After 24 hours of 'real' parenthood, Katie and I have realized that the phrase 'sleeping like a baby' is ridiculous.  If by sleeping like a baby, you mean a constant stream of grunts, coo's, cries, etc with intermittent periods of sleep, then you're right on.

I am only half-kidding.  Our two days at home have been essentially perfect and though we slept in shifts last night, we could not be happier.  Edward is extremely calm and mellow and doesn't seem to miss the hustle, bustle and beeps of the hospital.  We toyed around with the idea buying our own hospital monitor, so Edward would feel more at home (and Katie could monitor his heart rate and oxygen level - again, only half-joking).  Winston, our dog, on the other hand, is going through a period of 'adjustment'. 

Hope everyone is having a very Happy Easter as we certainly are. Here's a video of pictures from Edward's 95 days in the NICU and his first minutes at home!

Saturday, April 23, 2011

An Easter Miracle!

We are home!!!!!!!!!  Enjoy some pictures....details to follow soon!