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!

Wednesday, April 20, 2011

Great Success!

Edward had his surgery yesterday and everything went fantastic!  Katie and I arrived at the NICU around 6am to hold and kiss him one more time before he was taken down to the OR as he was posted for first case.  We were able to accompany him down with his nurse to the pre-op holding area where we met one last time with the surgical and anesthesia attendings.   Edward was lying happily in his incubator, sleeping peacefully and seemingly without a care in the world - in stark contrast to his parents standing above him, both anxiously wringing their hands and holding back the occasional nervous tear.  Finally, they wheeled him away, out of our watchful stare.

About two hours later, we got a call from the surgery attending reporting how great Edward had done and that the surgery went very well.  They found to large inguinal hernias and were able to repair both without incident.  Edward had the fortune of then undergoing his circumcision while under general anesthesia - most little boys aren't so lucky.  He was than taken to the PACU (post-anesthesia care unit) for recovery and hopefully for extubation.  Fortunately, Edward's lungs also performed wonderfully and he was able to be extubated almost immediately.  In fact, he returned to the NICU without any oxgyen at all!   He then spent most of yesterday recovering, but was already breastfeeding by mid-afternoon.

In fact, he has done so well recently that they are actually mentioning that magic word: discharge.  So well, that a few nurses who have taken care of him over the past 3 months, but who aren't working for the next few days are starting to say know...just in case.  So well, that they actually asked us to sleep over in the hospital with him tonight as a 'practice run for home!'  So consider this as a sort of live-blogging post, kind of like they do for major sporting events.

So, here we all sit in a small room off the side of the NICU....Katie, Edward and myself.  Spending the night together as family for the first time.  We are full of many emotions, but mostly joy and profound happiness (mixed in with a healthy dose of anxiety to be perfectly honest).  We are not home yet, but are close.  We likely have a handful of days ahead us, but not too many.  Certainly not 90 more.

We want to express our deepest thanks to all of our friends and family.  The outpouring of love and support has been non-stop and we could not have gotten this far without each of you, especially our parents.  We also want to thank you for all of your prayers as God certainly has been answering them and we have been so blessed to get to this far.  I also want to thank all the people who are friends of friends, mom's or dad's of friends, whom we have never met, but who nonetheless having been praying for us throughout this whole ordeal.  It has been so meaningful to hear that so many good people have been keeping us in their thoughts.  Don't worry, the blog is not ending quite yet.  We still have more work to do.  We just know that we cannot thank you all enough for all that you have already done.

Wish us luck tonight!

Monday, April 18, 2011

Ninety Days Down

You know you that have been in the NICU way too long when you hand the nighttime parking attendant your validation and he says 'Good luck with the surgery tomorrow....I'll be praying for you guys!"

Edward is in fact due for his inguinal hernia surgery tomorrow.  We are both excited and nervous.  We are excited because this is considered one of the final steps before coming home and nervous for simple fact of surgery.  I know many are praying daily for the little man, but if anyone has an extra prayer to spare tomorrow, we could use it!

Fortunately, he is scheduled for first case in the OR which means he should be done relatively early in the day.  Katie and I plan to be there around 6am to see him off into the careful hands of the anesthesiologist.  He will be given general anesthesia and intubated.  We are hopeful that he will only have to be intubated for a short time peri-operatively tomorrow.  But given the fact that he has chronic lung disease from his prior time on the vent, he is always at a small risk of requiring intubation for longer than expected.

We will post an update tomorrow!

Saturday, April 16, 2011

Room Air

Edward is officially on room air for the first time!!!  Yesterday morning, his nasal cannula was removed and he has been breathing on his own since! He still has small desaturations every now and then, but overall, he is handling it beautifully and we are hopeful he can remain off the oxygen forever!  Obviously, this is a tremendous step forward and we could not be more pleased.

Furthermore, the following statements have been made recently by Edward's team of doctors, NP's and nurses.

"There is light at the end of the tunnel."
"Do you have the nursery totally ready?"
"You should start buying diapers."
"You might be home by Easter."


Clearly, we are on the downslope of our time in the NICU and not a moment too soon.  Though we have had superb care here at UVA , Katie and I cannot wait to bring our little boy home.  In fact, especially now that the weather has started to turn nice, we often half-jokingly talk about stealing him for the afternoon, just to walk him in his stroller.  The poor guy has not had the opportunity to feel a single ray of sunshine in his first three months of life.

There are a couple more obstacles to bringing him home.  As Katie mentioned in her last post, he is still working on the breathing/sucking/swallowing coordination in relation to feeding.  He has made a fair amount of progress over the past few days in regards to this, but the goal is to have him take all of his nutrition by mouth (either bottle- or breastfeeding), nothing through the NG tube and be gaining weight.  We are not quite there yet.

He also has to have hernia surgery next week.  Inguinal hernias are quite common in premature boys and he definitely has one of the left and we think he has one on the right.  So next Tuesday, he will be taken down to the operating room for a bilateral inguinal hernia repair.  Fortunately, this is a relatively minor surgery and recovery should only be a day or two.  He will have to be intubated again, but they anticipate that he will only be intubated for a few hours post-operatively.

We are tantalizingly close.  Of course, once we are home, we will be faced with a new baby and I know this will have its own challenges.  But at least we will be at home!  Almost there.

Wednesday, April 13, 2011

Groundhog Day

February 2nd has come and gone, but our lives right now are starting to feel like we are stuck in the movie Groundhog Day (This is Katie, by the way!).  Sometimes we feel like we are going crazy! This past weekend, we wanted nothing more than to kidnap Edward from the hospital, just for the afternoon, to watch the Masters.  Michael wanted so badly to have Edward sitting on his lap, perhaps a beer in hand (Michael’s that is) watching golf! Instead we drove to the hospital and had this conversation:

Me: (Looking out the window) What do you think I would have to do to get readmitted to the hospital?
Mike:  (With a puzzled look) I don’t know, what do you mean?
Me: (Smiling) Like, if I cut my finger, do you think I could get readmitted to the hospital?
Mike: No, you would probably have to cut your finger OFF to get readmitted.
Me:  (Intrigued) Oh, really?  And how long do you think I would be in the hospital if I need reattachedment surgery?
Mike:  Probably a couple days….
Me:  (Disappointed) Oh, darn…. That’s all?  I guess that’s not really worth it, is it?
Mike:  (Rolling his eyes at me) You are thinking of cutting off your finger?
Me:  (Laughing) It would just be nice to be back in the hospital to be closer to Edward.
Mike: (In a matter of fact way) You are crazy….
Me:  (In an equally matter of fact way) We already knew this.

Yesterday, Edward had his first eye exam since the surgery. The ophthalmologist checked his eyes thoroughly and said that his eyes are already looking better!  The twisted and disorganized blood vessels are starting to smooth out. He will check again next Tuesday but that is great news for Edward!

Up next on the docket, eating!  We are anxiously waiting for Edward to gain full control of the suck, swallow and breathe process.  This, they say, will come with both time and practice. He is trying both breastfeeding and bottle feeding.  During some attempts he performs beautifully, and other attempts poorly.  He often forgets to breathe when he is swallowing, which results in an oxygen desaturation or an A/B episode.  He also deals with reflux on a regular basis, which sometimes makes him not enjoy eating! The speech therapist is working with Edward, giving him a bottle every morning. They say it is a lightbulb effect and suddenly things will start to click.  We are very hopeful and are awaiting that moment!

Yesterday, another NICU mom burst into tears and said, “I can’t believe I have been in the NICU with my baby for 2 weeks!”  I tried to console her while trying to not claw her eyes out like an enraged squirrel (did I just say that?).  She blinked and wiped away her sweet tears and asked me, “How long have you been here?”  I don’t know if she felt amazed or scared when I replied with a smile, “85 days, but who's counting?”  It feels like a blur, and it all seems to be the same day over and over again.  But when Edward looks around with his beautiful eyes and sweet smile, it just melts my heart.  Michael and I will get through 85 more NICU days if we have to, because we are just so grateful to have our baby Edward in the first place.  When I am feeling particularly crazy (like amputating my own finger) I have to calm myself by thinking that he has come a long, long way.  Our 6 lb 6 oz boy amazes us every day. All I can do is try to be patient.  In the meantime, I will try not to scare the other NICU moms!

Wednesday, April 6, 2011

Katie and I arrived at the hospital at 7:30 this morning as Edward was due for his eye surgery at 8:30am.  We were able to hold him and give him a kiss before they whisked him away to the procedure room.  They actually gave him a dose of fentanyl (pain killer/sedative) before they took him to make sure he was comfortable.  Again, as previously described, one of the side effects of the medicines that they give him for conscious sedation is respiratory depression.  So after one baby dose of fentanyl, Edward promptly had an apnea event.  It was only 10-15 seconds and resolved quickly.  However, Katie and I quickly became worried that as they had to add versed and more fentanyl, Edward would certainly have more A's + B's and subsequently have to be intubated.

So we waited and waited.  After about an hour, Edward's nurse (one of our favorites) stepped out into the waiting room and we could almost hear the words intubation as she stepped closer.  Instead, she reported how wonderfully he had done so far and they were over halfway done!  We were thrilled.  A short 45 minutes later and they were completely done!  Edward had done great.  The ophthalmologist was great as was the rest of the staff and we could not have been more pleased.

At the same time, Edward was completely wiped out from the procedure.  He had several A's + B's throughout the afternoon necessitating an increase in his oxygen flow and percent of oxygen inspired.  This was not terribly surprising and a happy concession to avoid intubation.  Hopefully, over the next 24 hours, he will make a full recovery and keep making progress!  Until then, enjoy his latest video.  I apologize to all my Georgia brethren for the Phillies t-shirt featured in the video - I really need to get him some Atlanta Braves gear!


Edward had his eye exam yesterday and unfortunately it showed progression of his retinopathy in both eyes.  The eye doctors consider the back of the eye like a face of a clock.  The center of the clock from which the hour and second hands emanate is the central part of the eye that executes the business end of our sight.  The actual hour and second hands are the blood vessels (except their are 4 major vessels instead of two).  Edward has about 'nine clock hours' of retinopathy in his right eye and 'three clock hours' in his left - indicative of Stage 3 disease.  Thus, we are planned for laser ablation this morning.  Though we hoped to avoid surgery totally, we are grateful that such a procedure exists.

The success rate of the laser surgery is approximately 90%.  Unfortunately, we will not know if the surgery is successful right away.  We have to wait for the next two eye exams to see if the laser halted the progression of the abnormal blood vessel growth.  The biggest complication of the procedure is permanent loss of approximately 10-15% of Edward's peripheral vision.  'Permanent vision loss' sounds pretty bad, but it turns out that we don't use that peripheral vision all that much.  The second biggest complication is near-sightedness which will lead to glasses at a fairly young age.  This occurs in about 50-60% of children similar to Edward who have to undergo this procedure. 

The procedure is done under conscious sedation, meaning they will give Edward two medicines (fentanyl (a pain killer) and versed (a 'relaxing' agent) to make him sleepy and comfortable so he can tolerate the procedure.  An unfortunate side effect of both of these medications is respiratory depression which can lead to apneas and bradycardias.  Should he begin to experience periods of apnea during the surgery, Edward will have to be intubated.  This happens approximately 10-20% of the time and we are hopeful that he can avoid the breathing tube!

So we could certainly use some extra thoughts and prayers today...We will let you know how the surgery goes!

PS: Laser is actually an acronym for 'Light Amplification by Stimulated Emission of Radiation' - I actually did learn something in college physics