We are HOME! Actually, we got home on Wednesday evening. Since then, we’ve been getting caught up on sleep and Sean is nursing all the time.

We found out the day of surgery that he has the double gene of a blood clotting disorder called Factor V Leiden. For now, he is getting injections of a blood thinner called Lovenox every 12 hours. I’ve also been changing the dressing on his incision twice a day, and he will be taking Lasix daily for about six months.

Bethany is enjoying some time with grandparents in Kansas as we continue to transition Sean home. We miss her terribly, but it does help to have both Brad and me able to focus on Sean’s recovery for a few days.

We have many doctor’s appointments coming. The first is with Sean’s cardiologist in Springfield on Monday. They’ll most likely repeat his echocardiogram and EKG, as well as focus a great deal upon his weight. He has lost just a little since surgery, but we were assured that all is OK as long as he doesn’t continue to lose.

We are entering yet another time of a “new normal,” because the life-changing event of Sean’s surgery is over and done, but we have some ongoing care issues. We’re continuing to adapt and attempting to normalize cleaning a 5-inch incision and giving shots into our son’s legs. But we are always mindful of how amazingly lucky we are, and we are grateful to be finished with the parental terror that is open heart surgery.

Sean’s surgery went very well. (breathing a huge sigh of relief) I’ll write more details later, but right now I’m waiting in a special room at the entrance of the Cardiac ICU. We’ve been told we can see him in about 15-20 minutes. My husband  is waiting to see him in a little while, but I’ll go in with my parents soon. I’m sure it will be bittersweet to see him, because we know he is on the mend but will be wired and tubed and breathing on a ventilator.

More soon.

Wow, what a day.

Sean’s open heart surgery for TOF repair is tomorrow. Here was his agenda today at St. Louis Children’s Hospital:

• I nursed him.
• EKG.
• Consulted with (surgeon) Dr. Huddleston’s nurse practitioner.
• Echocardiogram (nursed him during the test because he started screaming).
• Blood drawn.
• Urine collection bag attached to get specimen.
• Chest x-ray.
• Met with a physician’s assistant that took vitals.
• Nursed.
• Spoke with Dr. Huddleston.
• Waited 1.5 hours to meet with anesthesiologist that was unavailable.

That all took from 9:45am to 3:30pm, and there was so little “down time” that my husband and I didn’t get to eat lunch until we were all finished.

Unlike what I had been told last week, breastmilk is not considered a “clear liquid” (grr) so Sean can’t nurse anytime after 2am (central time). If you happen to be up sometime shortly after that, you might lift up a prayer for us because it will be very, very difficult to comfort him without being able to feed him.

We are to report to the hospital at 5:45am. I’m not exactly sure when they will have us hand him over for the operation. I’ll tell you, we are both dreading that moment. Our anxiety and fear are mounting, but we know that we will be able to deal with it somehow.

Sean’s grandpa just compared that moment for us to what Abraham must have felt when he was tying up Isaac to sacrifice him as God had commanded him to do. Here he was, finally a father to a much-loved son, and God told him to do something unthinkable. In that moment, Abraham didn’t know that there would be an animal in the thicket, but he obeyed anyway. And from that moment of sorrow, God worked unmeasurable good.

I’m not sure if anyone can feel totally ready for their infant to have a major surgery like this, but I can tell you that we feel your love and prayers. And we know that, with your help, we will get through this.

Sean has Tetralogy of Fallot. We are traveling to St. Louis for pre-surgery testing on Thursday, and his complete repair (open heart surgery) will be on Friday.

We have just two days before we head to the city (leaving Wednesday). I know from past experience that I become frazzled when faced with a big event like this, so I’ve been making a Packing List for about a week now. My husband and I are having a tough time getting things together for the trip, because packing makes it Real. Our son is having a major surgery on one of the body’s most vital organs, and all before he’s four months old.

As irrational as it is, I wish I could scoop him up and run away from anyone that would hurt him. Even though I know the surgery will help him in the long run, I don’t want to hand him over to be put in pain. And there is that small voice that wonders if something terrible will happen and I’ll never get to see his smile or hear him coo at me again.

So even though I’m close to tears at every moment, I’m stuffing them back – packing them, if you will. I need to do my best to focus on the tasks at hand: preparing the house for our absence, packing our bags for the trip, and savoring every moment with Sean and his big sister. Those tears will inevitably come. But not yet.

Were you on Facebook at all today? If so, did you notice something unusual about the status updates of some of your female friends?

An experiment of sorts happened on the social networking website today, and its goal was to raise awareness for a cause that affects many. I’ve seen several versions of the message that explained it, but here is just one:

“In your FB status post the color of the bra you are wearing. Just the color, nothing else. Then send this message on to the girls in your life that you care about, leave the guys out of it, will be fun to keep them guessing when all they see are names of colors in our statuses! Do this for Breast Cancer Awareness and don’t forget: FEEL YOUR BOOBIES!!!!!”

It took a little while for me to get into the know, but when someone explained it to me I participated. Partly because I’m usually one to join the party, and partly because I wanted to be sassy and post mine as “Nude. ”. It was interesting to read the chatter after each “color” update, especially as the well-meaning but clueless men were trying to figure out what in the world was going on.

I think everyone would agree that breast cancer awareness is responsible for saving many lives. I’m glad there are charities that focus upon awareness and education for many different diseases. When it comes to health issues, Knowledge is LIFE. Which is why I am baffled as to why I had no idea that Congenital Heart Defects (CHD) are so common until I started reaching out for support after my son Sean was diagnosed.

I know about adult heart disease. I know about prostate health. I know about the risks associated with preterm birth. I know about AIDS prevention. I even know the common (and a couple uncommon) side effects of drugs for erectile dysfunction. So WHY did I not know that one out of every 100 babies are born with a CHD?

I have no answers or bright ideas to remedy this. To be honest, I just needed to write to get all of this out because I feel like I have to. But I for one will be putting CHD info in every status I post during CHD Awareness Week in February.

Monica, Sean’s Mama
Born 10-2-09 with Tetralogy of Fallot
Open Heart Surgery scheduled for 1-29-10

I’m new at this. I haven’t been in the CHD world very long. We had absolutely no idea that our son, Sean, had Tetralogy of Fallot (TOF) until several days after he was born October 2nd of this year.

When he was born at 37 weeks, he weighed 5 lbs 8 oz. The OB immediately noticed upon delivery that his umbilical cord was only two vessels instead of three, so that prompted the Peds Doc on call to do a few more tests. In that time, Sean’s heart murmur was first detected. By his fourth day, he had dropped down to 4 lbs 14 oz and I was convinced I was watching him wither away. It was six days in that we confirmed with an echo that he has a hole in his heart, and by two weeks from his birth we knew about the TOF.

We have been tremendously lucky. Sean’s oxygen levels have stayed at 100% and he has gained weight very well. Now at almost three months, he has doubled his birth weight. The cardiologist says that considering his diagnosis he is thriving. However, the fact that he looks healthy on the outside can deceive someone into believing he isn’t a sick baby, but I’ve heard the loud “swoosh, swoosh” where the thump of a heartbeat should be. I know better.

This past week we set the surgery date for Sean’s Open Heart Surgery (OHS) at St. Louis Children’s Hospital. His surgery will be on January 22nd. So in barely a month, I’m going to be handing over my sweet child to a medical team I’ve hardly met so they can stop his heart and crack open his chest.

I’m thankful we get to go through the holidays at home instead of being in the hospital. Our daughter celebrates her third birthday soon after Christmas, and she deserves to have a special day. But that surgery is always in the back of my mind. My heart fills with anxiety as I contemplate not only the surgery itself but the recovery. “Will he continue to be one of the ‘lucky’ ones and have no complications, or will our luck run out?” I wonder.

So I guess I’m able to provide a perspective to this site that is relatively unique, because I don’t have the benefit (or horror) of hindsight like the other authors have shared so far. I’m inviting you to join us in this journey. I pray that Sean will be one of the survivors in the battle.