The Road to Recovery is Paved with Successes, Setbacks and Perspective.

Shep's recovery has taken a bit longer than we and his doctors originally anticipated. The good news is that Shep is now driving straight on Recovery Road, but over the past few weeks he took a couple of detours down Collapsed Lung Lane (I will explain this highway system below).
When Shep was first admitted to the hospital Vicki and I were informed that he would likely be home in just over a week. We have now been in the hospital for 17 days and we still have a few more days ahead of us. These last two weeks have been incredibly challenging, but Shepherd has been amazing throughout this entire process and continues to impress and inspire his parents.
First and most importantly, Shep's surgery was a success! After two weeks of constantly monitoring Shep's vital signs and performing an echocardiogram to monitor the flow of blood through his heart, Shep's doctors are very pleased with the results of his surgery. There is still a little residual leakage around the patch in Shep's heart, but this condition is common in these types of procedures and the doctors are confident that these little holes will close or get smaller as Shep's heart grows. So with Shep's heart in good shape you may be asking yourself, "why have they been in the hospital so long?" The answer to that question is - Shep's lungs.
During the surgery and in the days following, Shepherd was on a ventilator to help him breathe. About four days after the surgery Shep's doctors tried to take him off the ventilator. Initially, Shep did well, keeping his vitals within acceptable levels and breathing regularly. However, after about 12 hours of breathing on his own, Shep's vitals began to deteriorate and his breathing became labored. The doctors ordered a chest x-ray to get a better look at Shep's lungs and quickly realized that his right lung had collapsed. In his weakened state Shep was unable to reinflate the lung on his own and he had to be placed back on the ventilator. We are not exactly sure why Shep's lung collapsed, but it is not uncommon for babies to have trouble coming off of a ventilator. After his initial attempt, Shep's lung collapsed two more times before he was finally able to reinflate his lung himself and breathe on his own. Hence, his detour down Collapsed Lung Lane.
And so here we are. Shep reinflated his lung and has been off the ventilator for four days! Since Shep has been doing so well he was moved out of the CICU and onto the regular hospital floor. His vitals and breathing continue to improve and we were able to begin bottle feeding. Of course, feeding is all about coordination and right now Shep's suck / swallow / breath is about as coordinated as Charles Barkley's golf swing (if you don't get this reference YouTube it and your welcome). But we are working on getting Shep's swing back. Just like in the NICU, we are back to focusing on feeding and growth. Once we get Shep back to the levels he was at before being admitted to the hospital we can go home. So there are 99 bottles of formula on the wall and we are taking one down and passing it to Shep.

Before I go, I wanted to touch briefly on the perspective we have gained over these past few weeks. There is no doubt that Shepherd's road has been rockier than most. But with that being said, time in a children's hospital offers a parent a unique opportunity to put things into perspective. During Shep's stay in the hospital we have met some wonderful people and heard some amazing stories. It is easy to get discouraged when your 15 week old child has spent more than 10 weeks of their life in a hospital, but when you meet a two year old who is on her sixth hospitalization or a newborn who is undergoing his second major surgical procedure you are reminded that their are roads far rockier than your own. It also helps to have wonderfully supportive people around you. From the amazing grandmothers who have put their lives on hold to come up and take care of Jack, to the other families in the CICU and the incredible doctors, nurses and staff at Children's, the level of support and compassion we have received is difficult to put into words. Vicki and I are so proud of our son and forever grateful to those around us.

Driving straight and fast on the road,

-The Brittons

Surgical Success!! Bring on the tubes, wires and lines.

Remember that scene in the Matrix where Keanu Reeves takes the "red pill" and wakes up in the real world. After waking up, he finds himself in a little pod connected to all kinds of tubes and wires. That scene basically begins to paint the picture of Shepherd's current state; however, Shep has way (or as Keanu would say waaaaaay) more tubes, wires and lines attached to him. But please don't worry about our little guy. All the tubes and lines are standard procedure for someone recovering from heart surgery.

After getting Shep to the hospital at 6:00 am and getting him all checked in, the anesthesiologists took Shep into pre-op around 7:45 am yesterday morning. What's interesting about surgery in the digital age is that when Vicki and I checked Shep into the hospital we were issued a pager that would receive surgical text updates to help keep us informed. Now, I know what you are thinking, how helpful can "OMG, Shep is like totally cute and doing so good :-)" or "LMAO, Shep just farted" be to a parent. Fortunately, the texts we received were far more no-nonsense and medically oriented. Vicki and I received messages letting us know when the first incision was made (8:55), when he was placed on the heart and lung bypass machine (9:35) and when he was taken off of it (approx 11:15). Despite their lack of sugarcoating, I am a big fan of the text message system. One thing I have come to realize over the past few months is that when your child is having any type of medical exam or procedure performed on them, silence is excruciating. Though the messages are brief and delivered via pager, the texts help break up the four plus hours of deafening silence. However, if the hospital asks us for feedback, I will be sure to tell them that a "ur kid is 2 cute," thrown in every once and a while couldn't hurt.

Once we received the final message letting us know that Shep was off the bypass machine, we were taken to a room to meet with Dr. Jonas. This meeting actually takes place before Shep is out of surgery as other members of the surgical team are tasked with finishing the basic maintenance and closing the chest. During our meeting Dr. Jonas informed us that Shep's cardiac anatomy was more complex than he originally anticipated. Even though Shepherd had multiple echocardiograms, there is really no substitute for seeing the heart in person. Shep's complex anatomy forced Dr. Jonas to alter his surgical plan and make adjustments in the OR. However, in the end, it appears the surgery was completed successfully (we will know for sure in a day or two when we can do a follow up echo). Dr. Jonas was able to patch the hole, correctly route the blood and shave off the excess muscle. The complexity of his cardiac anatomy, which made for a technically difficult surgery, has served to reinforce our decision to switch to Dr. Jonas. Though it is possible Shep would have been fine no matter who did the surgery, there is a chance that a less experienced surgeon wouldn't have been able to perform the correction given Shep's unique anatomy.

Now, with the surgery behind us, our attention turns to recovery. Vicki and I were finally able to see Shep around 3:00pm yesterday. Our little guy is in a cardiac intensive care unit, which is a specialized unit of the hospital with just 13 beds. The level of attention patients receive in this area of the hospital is nothing short of amazing. Shep is followed by a team of CICU doctors, the cardiothoracic surgery team, his own cardiologist, and his own nurse 24/7. At first glance, this level of care may seem like overkill, but Shep's condition changes by the minute. At this critical stage Shepherd requires constant attention, his breathing, blood and chemical levels are being checked around the clock and his medications are adjusted continuously throughout the day. This attention to detail and level of care is all done in an attempt to strike a delicate balance in his heartbeat, blood pressure and respiratory rate. And as of right now, that balance is being struck. Shep's blood pressure remains strong, his heart rate continues to fall and with each passing hour he breathes more on his own.

Like any surgery, the first 24 hours are the most critical and we are now past the 24 hour mark. Shep is a rockstar and he improves with each passing minute. We will have more news to report after the next echocardiogram, but in the meantime, he is doing wonderfully. Thank you to all for your thoughts, prayers, positive vibes, good feelings, positive energies, loving sentiments and Zen. Shep thanks you too!

PS Since this isn't a terribly happy subject matter I am including a slideshow of the boys Christmas portraits to help brighten everyone's day. The Title is Christmas is Exhausting...Enjoy!

Love,

-The Brittons

Shep's Surgery is Scheduled for Monday, 1/11/10

The day is finally upon us. When Vicki and I first found out about Shep's heart condition we were told that his surgery would not take place until he was four to six months of age. However, on Monday, Shep will be just shy of three months old. Let me explain the reasons why we pushed up the date of his surgery. First, and most importantly, we did not push up the date for medical reasons. Shep continues to do well and could have easily waited the four to six months that was originally approximated. We made the decision because of a unique opportunity that arose.

Vicki and I were lucky enough to get on the schedule of one of the best pediatric cardiothorasic surgeons in the country. Dr. Richard Jonas, is the gentleman who will be fixing Shep on Monday. As a result of this change in surgical teams, Shepherd will no longer have his surgery performed at Fairfax Hospital where he was born, but instead will have it performed at Children's Hospital in D.C. As I have stated before, the care we have received at Fairfax has been amazing and the surgical team had a great reputation. However, Dr. Jonas is the best and we would be remiss if we did not utilize his expertise.

The change of surgeons leads us to our second reason for being able to push up the date -Shep's progress. Shepherd has done an amazing job both in the NICU and here at home. Since he has grown so quickly and is eating well, there is really no reason to wait. Dr. Jonas operates on babies far smaller than Shep and by operating now we can begin the recovery process that much sooner. Often it is the recovery, rather than the surgery that proves to be most difficult. The good news is that because Shep has been able to do so much on his own (eat, poop, regulate sleep, maintain a strong immune system) he will likely recover at a faster pace.

The changes to Shep's plan all came about during the Christmas holiday and we have spent the last few days getting ready for the week ahead. Last Thursday, Vicki and I sat down with Dr. Jonas and went over the procedure. Then on Friday, Vicki took Shep to the hospital for all the preliminary testing (all of which came back normal). So now we wait for Monday.

We have to get Shep to the hospital on Monday morning around 6:00 Am. Shepherd will go into surgery around 7:30 and the procedure will take approximately four hours. The surgery will be performed just like an open-heart procedure in an adult. I mentioned in one of my first updates that Shep has a VSD and subpulmonic stenosis. He also has something that is called double outlet right ventricle (DORV) (check out the picture below to get an idea of what Shep's heart looks like). During the surgery the doctor will go in and sew a patch over the VSD and close off the double outlet, so the aorta only gets oxygenated blood and the pulmonary artery only gets deoxygenated. Finally, the doctor will shave off the excess muscle around the pulmonary valve, allowing more blood to flow to the lungs. Vicki and I will get updates throughout and when Shep is finished he will be moved to a special cardiac intensive care unit. Shep will likely spend the week after his surgery recovering in the hospital. It also is worth mentioning that children tend to recover much faster than adults. Because Shep's bones are still forming he will have far less discomfort and will be moving around much more quickly than the typical adult patient.

So that is where we are at. Everyone is very optomistic and Shep is expected to make a full recovery. Remember, he has been training and preparing for this day his whole life. When I go into the boys' room Shep has the theme song from Rocky playing and he is doing cardio, lifting weights and drinking milk all at the same time. Our little guy is going to kick ass on Monday and Vicki and I will be oh so happy to put this behind us. As always, I thank you all for your positive energy and good thoughts. I will send updates as soon as we know that Shep is out of surgery and is doing well.

-The Brittons

Everyone gains weight during the holidays.

I apologize to everyone for not updating the blog for a few weeks. I will do a couple of updates in short succession to bring everyone up-to-speed and of course share the newest pictures.

To begin, the boys first holiday season was a huge success. Like everyone, Shep and Jack packed on the pounds between Thanksgiving and New Year's. When the little guys were born they weighed 3 lbs 5 oz and 3 lbs 4 oz. Today, they each weight 8 lbs 3 oz. Weight gain has been a constant theme in these updates because it has been the major theme in our lives. From making special breast milk / formula cocktails for Shep to keeping a log that lists the exact time, amount, and medications in each feed, a large part of our day is dedicated to helping the boys beef-up. In fact, since they left the hospital the boys have been to the pediatrician's office four times and have had a home health nurse visit once a week, all in an effort to closely monitor their growth. Therefore, Vicki and I were super excited when we found out the boys were 8-3!

In addition to eating, Shepherd and Jackson spent the better part of December spending time with both sets of Grandparents, their Aunt Jo, Uncle Bruce, Great Grandma Debby and of course Aunt Heather. It was great having the families in town and the boys were of course spoiled rotten and loved every minute of it. Shep and Jack also experienced their first snow storm, as the Mid-Atlantic was blanketed in over a foot of snow the week before Christmas.

It was an amazing holiday season and the Britton boys were definitely full of Christmas cheer. Over the past month, Shep and Jack assembled a very impressive holiday wardrobe. The ugliest Christmas sweaters have nothing on these boys. From Santa themed sleep slacks, to all green onesies, it seemed liked everyday brought a new and more festive outfit (you can checkout their wardrobe by looking at the pictures below). Shep and Jack are already planning next year's winter wardrobe.

I recognize that 2009 was a difficult year for many people, whether for economic reasons, health issues, or you were Tiger Woods. However, the birth of Shepherd and Jackson coupled with the copious amounts of love and support from our friends and family helped make 2009 our best year yet. Shep, Jack, Vicki and I are looking forward to a 2010 filled with happiness, lots of good HEALTH, and more great times with friends and family. We are wishing you and yours the very best in this new year and as always thanking you for your love and support.

Kodak Slideshow of Shep and Jack's Holiday Spectacular

-Shep, Jack, Vicki, Ryan