We're home!

Corey had an elevated temperature during recovery but it subsided and we were able to bring him home around 5pm. He was acting completely like himself tonight so we're very happy about how things are progressing. Now we prepare for the Fontan open-heart surgery scheduled for a week from today...

Still recovering from a successful cath

We have moved down to the recovery floor, and Corey is doing great! He looks like he's about to nod off and nap, so I'm trying to ignore him and let him drift off.

We spoke with Dr. Coulson again after the cath was complete, and he said everything went well. Corey's pressures are as they should be, making him a good candidate for the Fontan (excellent news). Also, the pulmonary stenosis was not enough of an issue to require a stent, and no intervention is always a good thing. We have to wait for a couple more hours, but then we can go home.

As we started to speak with Dr. Coulson following the cath, he hedged a bit and said that he doesn't like to commit to "no complications" until the patient wakes up. Corey was still out at that point, and my anxiety level went right back up. Until Corey woke up. And went right back to being his usual wonderful ornery self. I'm going to let you guess what he said when he woke up - here are your options:

1. Where's Mommy?
2. Where's Daddy?
3. Where's my chalk?!

We also spoke with the nurse practitioner who coordinates all pre-surgical necessities, such as blood work, chest X-rays, etc., as well as restrictions before surgery, time of arrival and all of that. Luckily she was able to arrange for a bedside chest x-ray, so we don't have to do that in Columbia - wa hoo! When the x-ray tech came by, she said to Corey, "Say cheese!", and he shouted "Oscillating fan!" So yeah - he's right back to being Corey, I'd say.

We learned that Corey will require weekly blood draws following the Fontan to assess his Coumadin (a blood thinner) levels for up to six months. Oh joy. That was really the only new information.

We are happy to be finished with one (difficult and scary) step toward a successful Fontan. Thanks for all your prayers and love and support.

Corey's cath is done

The cath is complete, it was diagnostic only. No stent was placed, and we will go home today! They still need to remove the lines and wake him up, but we can head up and see him soon. All signs are pointing to success! Thank God!

Cath update

The OR nurse just called to inform us that Corey is completely asleep, everything went fine, all the lines have been run, and Dr. Coulson is about to begin. Prayers please!

Beginning of the cardiac cath

Corey's cardiac catheterization is underway. We woke up this morning at 5:00 AM, readied ourselves, and woke Corey for the ride to Johns Hopkins. (Mason is staying with his Nanny & Papa.) Corey was all smiles, in good humor, as we left for the hospital. I concentrated on not puking. He chose a toy from his toy jar (sidewalk chalk), and commented on the fact that we were leaving the house in the dark, which we usually don't do. That's my observant little man!

We arrived, checked in at reception, enjoyed the fish tank, and waited to be taken back to a room. The room proved to be his favorite place, as there was a mechanical bed, which he quickly learned to work. We then spoke with Dr. Coulson, the cardiologist who will perform the cath, and then we spoke with the nurses and anesthesiologists.

Essentially the cath will assess Corey's pressures (necessary for the Fontan), and if there is any narrowing of the pulmonary arteries, a stent will be placed. The process will take approximately 3 hours. The nurse will call us with updates as the procedure continues, and I will update as soon as we know more.

We then walked, with Corey in Damian's arms, to the OR. Everything happened very fast when we arrived. Corey was on the table in a matter of seconds (after observing the piping and that air would be pumped through it, of course - Corey is all about pipes). The anesthesiologists asked us each to hold one of Corey's hands, and then the mask went on his face, which he hated. Even though we tried practicing last night. He did not cry, but he did struggle to take the mask off. We kissed him on the head, told him we loved him, and left.

So we've started. It was really difficult to watch my little one struggle that way, but I'm trying to remember that we brought him here for a reason - we trust this team of doctors. I'm hanging on to that.

Corey's cath on Tuesday

Corey is scheduled for his cardiac catheterization on Tuesday at Johns Hopkins. We'll be arriving at 6:30 AM for check in. I am doing my best to think calming thoughts. It does help that I've had a cath myself - it makes it less frightening. Mostly I'm afraid of the Fontan. I'm trying to stay calm, but it is difficult.

Spending time with Corey is always helpful, though. And Mason, of course. Mason's big kisses have great healing properties. We'll update as soon as we have more information - hopefully during Corey's cath.

And I'll close a sweet Corey quote:

Holding out two bright pennies to his Gaga, "Gaga, take these shiny pennies to work and give them to people who don't have any money."

A trip to VA for our 5th wedding anniversary

My wonderful, fabulous, terrific in-laws gave us the gift of a weekend away, including not only child care, but a paid room in Charlottesville, VA, for our 5th wedding anniversary. Ooooh, ahhhhh.

We had a wonderful weekend. (Lots of food talk here, you might need a snack before proceeding.) We left on Friday afternoon, arrived in Charlottesville around 5 PM, and checked in to our enormous suite at the Courtyard Marriott. The bedroom and living space were separate, in true suite fashion, and the bedroom was massive, with a huge king-sized bed and loads of space. We immediately opened a bottle of wine we'd brought, had a glass and toasted to our freedom. Then it was off to Outback, where we started with crab-stuffed shrimp, followed by a loaded baked potato, filet, and blue cheese wedge salad. All very good. And we split a bottle of Greg Norman wine. Mmmmm.

The next morning we slept in - a rare luxury with two small children - then we opted for breakfast right in the hotel. Veggie omelets, bacon, fruit and coffee, and then a short stroll back to our room to relax. Next it was off to Barboursville Vineyards (http://barboursvillewine.net/b/), where we did a $4 wine tasting which included an enormous list of wine. We're talking literally 18 wines to taste, 1 ounce per pour, after which a rendition of the Hallelujah Chorus suddenly seemed like a good idea.

We were in dire need of food after that, so we hopped over to the winery's Italian restaurant for a two-course, 2-hour lunch with a wine pairing. They poured us some champagne to start, and I had a shrimp scampi dish served with a savignon blanc followed by a vegetable wellington, served with a red Sangiovese reserve (all from the Barboursville winery). Yum yum. After that, we toured the winery, and then it was back to the hotel for a nap.

And then the real meal began. What's that? How could we possibly eat or drink any more at this point, you ask? I have dress-up cookie pants, that's how. We had a reservation for the chef's tasting menu with wine pairing at a French restaurant called La Fleurie (http://www.fleurierestaurant.com/), and that started at 7:15. Before I detail the 9 courses we worked our way through (yes I did say 9), let me just tell you, it was fabulous - FABULOUS! - and the longest meal of my life. We didn't leave until 11 PM. I started wondering if they were waiting for us to wave a white flag in defeat by the end. We did not. We ate it all.

So here's how it went. The restaurant was very small and quaint, with lots of candle-light, exposed brick, and pillaresque beams. Just lovely. We had a wonderful quiet table in the corner. The first course was a rose champagne, served with a tiny little cup of artichoke soup that was heavenly. Second they brought us the richest fois gras pate I've ever tasted, served with a perfect sweet dessert wine. The sweetness cut perfectly through the velvety richness of the fois gras.

Third it was a single scallop in a giant bowl, served with some greens and a stock of some sort, served with a pinot grigio. Delicious. Fourth was my favorite - a gnocci served with a creamy truffle sauce and a sharp biting chardonnay. OOOOOOHHHHHH. I scraped the bowl and briefly considered licking it. Next we were on to giant chunks of lobster in a buttery brown sauce, served with champagne. How can you beat lobster and champagne? The sixth course was the most buttery salmon I've ever tasted, served over lemon grass, and paired with a red wine that I am fuzzy on the details of. At this point the waiter asked if we planned to drive home. I said, "No way!"

And then he proceeded to move on to the seventh course, a tender lamb served with a deep bordeaux. Just when I thought I might have to consider camping under the table for the night, dessert arrived. It was a rectangular tray, complete with three little morsels. The first was a home-made almond ice cream - hands down the best ice cream ever made. Next to it was a small puffed pastry, rolled in cinnamon. Finally a tiny espresso cup of hot cocoa with whipped cream, and this was served with a delicious orange-colored dessert wine. And, as if this were not enough, petite four made their way to our table as well.

I cleaned every plate except the dessert tray. I ate a couple of bites of each, and had I not been so full from the rest of the day's drunken debauchery, it would have been harder to stop there, as every bite was velvety perfection. Finally the chef came over, and we thanked him profusely for a wonderful evening. He said he enjoyed cooking for such an adventurous couple, and we said we were glad to oblige. Then we huffed it out to our cab, arrived back at the hotel and passed out from sheer overfed exhaustion.

The next morning we grabbed bagels and headed out the door. When we came home, we had to do a lot of work to prepare for the painters, then we headed off to my mom's for a few days. But now we are home! And the house looks great. Now if we can just sell it......

Pics of the Kids

Here are some shots from Corey's birthday party, as well as some shots from around the house. Mason is uber cute in his chef's outfit.

http://www.damianandjenn.com/photos/index.php?album=030909

http://www.damianandjenn.com/photos/index.php?album=022209

Fear

If you love Corey and you don't want your day ruined, you should stop reading this right now. But I have to write it. I'm scared out of my mind about the Fontan, and I have to get it out, and this is where I've chosen to do that. Don't tell me that there's reason to hope. Don't tell me it's all going to be ok. Don't tell me there's no point in freaking out. I know all that. Most of the time, I use all of that logic to propel myself through these days leading up to the Fontan. To make them as normal and happy as I possibly can for Corey.

But I can't do that every second. It's always there, in the back of my mind. What if we lose Corey? Yes, I said it. I said what we are all thinking. Nobody says it, but it's there, like an elephant in the middle of the room. What if I lose my precious child? My wonderful, amazing, smart, beautiful, sweet, articulate, beautiful first born child? The light of my life. He represents all that is good in the world. All my hope for the future, all my joy in the present. How do I go on in a world without Corey in it?

What if I have to write his eulogy? How am I going to do that? Could I do it? I think I would have to. I'd have to honor him by doing that much for him. When I am alone with my thoughts, sometimes I start to write it in my mind. Then the horror of what I am doing sets in and I can't continue.

Flashing through my mind are words from parents who have lost their heart children. Specifically one woman's voice is playing in my head over and over again, like a broken record. She took her daughter in for the Fontan, the very surgery my beautiful child will have, and her daughter didn't make it. The woman said, "When we got to the hospital, our little girl was laughing and skipping. If we didn't do this, she'd still be here." Am I going to say those words? Am I going to look back and wish with every little fiber in my body that we had just said no?

I can't really let myself believe that we will lose Corey, though. As much as the thoughts are there, and as afraid as I am, I can't let the true meaning of his loss penetrate through me. If I let it settle down deep, into my bones, into my soul, I'd never get through another day. It's always there, but it's always at bay. If I really felt it, I'd curl up into a little ball and that would be that.

Right now, I am Corey's mommy, and it's my job to make his life the best it can be. I know this. I also know that I trust Dr. Vricella and Dr. Brenner and God. And finally, I know that Corey must have this surgery. It is apparent in his everyday life and play that he needs it. I can't deny him this help, and so I will find the strength, somewhere and somehow, to get through this.

25 Random Things (from Facebook)

I needed to do something to distract myself from obsessing over the Fontan, so I wrote the "25 Random Things about Me" note on Facebook, and I've decided to put it here as well.

1. I think that avocado is probably my favorite food. My beloved grandpa farmed them after he retired. I say "probably" because one can never really be sure about the word "favorite" used in conjunction with something that green and mushy.

2. I know all the words to noggin's "Everywhere I Go".

3. In my opinion, people who do crossword puzzles in pen are maniacs, and people who do crossword puzzles in pencil are idiots. This puts me in the idiot category. I'm comfortable there.

4. I like long walks on the beach and quiet evenings at home....oh wait - this isn't a personal ad I'm writing. I like any evening at home that doesn't end with food in my hair or water damage from the boys' bath.

5. There have been many defining moments in my life, but there is one single greatest defining moment. The moment I realized there was hope for my CHD child, and I decided to fight for him.

6. My husband is the smartest person I know.

7. Today I introduced my children to pop music (they listen to classical and/or children's songs). The song I chose was Lady Gaga's "Poker Face". This information is not going on my application for "best parent of 2009".

8. I have a small mole on my left cheek. My son Mason likes to try and scratch it off. I told him it was a beauty mark. I don't think he bought that.

9. It hurts me to spend money on socks. Oh yes. Hurts. I'll spend $100 on a pair of boots, if I am in love with them, but I will sew up the holes in the toes of my socks.

10. I sang with an a cappella group in college. I saw the audition flyer on a garbage can lid and thought, "What the hell?" I was so nervous during the audition that I briefly considered jumping out the window instead of singing. I also considered puking instead of singing. I ended up just going with the singing.

11. I liked my last fortune cookie so much that I am now carrying it around in my purse. The fortune, not the cookie. Don't ask me to see it. Because then it won't come true. Duh.

12. I spend $1 on a Mega Millions lottery ticket once every two or three months. Then I dream about what I would spend the money on before I throw yet another losing ticket in the trash. I also field taunts about the lottery being around for people who are bad at math. This is a good exercise, I think.

13. I taught my 4-year-old how to use the word "oscillate" correctly in a sentence. This information definitely will be on my application for "best parent of 2009".

14. I am reading the Twilight series, even though I am not 14 and have been out of braces for half my life span.

15. My brother has one of the world's coolest jobs - he's a professional poker player. That is what is listed on his tax returns.

16. I think the Food Network is like porn for food. I have to eat while watching it, but I do get lots of great ideas from the shows.

17. I can ride a horse.

18. Both my children were born via emergency C-section. My heart child and I have "who has the biggest, coolest scar?" contests. He wins, which he loves, and I feel sad about.

19. My two-year-old doesn't talk much, but he does use signs. We taught him how to sign "Daddy, let's play Guitar Hero!" What else does a little boy need to know, really?

20. I have a two-year-old niece who gives huge kisses and says, "Pittsburgh!" I smile whenever I think about her.

21. When I was a little girl, I had blonde, straight, shiny hair. This turned into a massive rat's nest of brown curly hair, and I take this as proof that life isn't fair.

22. I graduated in the top 5% of my high school class. But I find that writing without a "spell checker" is similar to driving without a seat belt.

23. No matter how cute the baby, I don't find baby poop cute.

24. Wine and coffee - good. Wine fridge and coffee grinder - totally awesome.

25. I've watched my child endure two open-heart surgeries, and I've learned that there is nothing worse than watching my child suffer, and nothing I wouldn't do to make it better. "Mommy" is my favorite title.

Here we go

I've spoken with Dr. Vricella's secretary, and we have a firm date now for the Fontan. It will be on Tuesday, April 7th. This date is firm, and I'll have a written confirmation letter shortly. Preoperative work will be done on March 31st, the day of the cardiac cath.

There is a SMALL chance this date will change - if Corey has a cold, they will cancel, or if there is no bed in the PICU, they will cancel. But those are things we can't control, so if you are making travel plans, please go ahead and do it.

Corey's Cardiac Cath

I've spoken with Glenda of the Johns Hopkins cardiac catheterization lab, and Corey's cath has been scheduled. March 31st at 6:30 AM. Corey will be the first case of the day. This is great, because we will have less time to freak out that morning, and Corey we won't have to spend half the day telling Corey he can't have anything to eat or drink. If you've ever told a toddler they can't have any food or drink, you know how not fun it is.

To give you some details about how the cath will go, Corey will be put under general anesthesia, beginning with a mask (so he won't have any sticks of any kind until he's under). Then the IV lines will be run, and when he is prepped, the cardiologist (who I am assured has a great deal of experience doing caths) will enter Corey's body through his groin and his neck, using a catheter to see inside his heart from two places.

If everything looks fine with Corey's heart, Corey will be released from the hospital the day of the cath (4-6 hours after the procedure). However, he does have pulmonary artery stenosis, so if there is intervention required (a balloon to expand the artery, for example), Corey will have to spend the night at the hospital.

Additionally, there are two potential hitches, which could cause the cath to be canceled. (God forbid - I'm not sure I could take it!) If Corey gets a cold, he can't have the cath. If there is no bed for him to spend the night in the PICU, the cath will be canceled. While both scenarios are unlikely, I want all of us to be aware of them.

Finally, I've asked Dr. Brenner and Dr. Vricella for a Fontan date, and I expect to have it in the next couple of days. (deep breath) Here we go!

Visit with Dr. McKay and The Fontan

That's right, I said it. It's time to gear up for the Fontan. We will be having a cardiac catheterization this month (though the date is still TBD, and that is extremely frustrating and annoying), and we will have the Fontan soon after (most likely early in April) at Johns Hopkins in Baltimore. Our surgeon assures us that his team is ready to proceed as soon as the cath is complete.

Many people have asked what they can do to help during this very stressful time. First, let me say thank you to everyone for your love and support. Second, I'm going to give you a list of a few things that really would help, and if you have the time and the notion, you can pick something from the list.

1. This is the biggest consideration: Mason. Corey will be in the hospital from 1 to 6 weeks (we don't know how long), and he is going to need his mommy and daddy there as much as possible. This means we need child care for Mason. If you can take Mason and care for him, for any length of time, that will help us a lot, as it will give us more freedom to tend to Corey.

2. Food. Send us a something or, better yet, come for a visit and bring us something. Thinking about food is the last thing we're going to want to do, but obviously we need to take care of ourselves.

3. Visiting Corey. Come see Corey at Johns Hopkins - he loves to see people. He's always asking me "who's coming over today?", so a visit from you would surely brighten his day and make him feel loved. And that should help his recovery. If you really want to see him smile, bring a pack of stickers with you. He loves stickers.

4. Pray. We need all the help we can get.

That's it for now. I'll update with more information about the when of the Fontan as soon as I can.

On to Corey's 4-year well-child checkup. Damian took Corey to see Dr. McKay this morning, in spite of the blizzard. He felt confident about driving, and of course we didn't want Corey to miss the visit, so they went. I had a brief moment of panic as 2 of my 3 favorite guys drove off in the snow, and I nearly ran out after them, shouting, "Come back! Come back!", but then I managed to get hold of myself, and I let them go.

And it was fine, of course. Corey weighs in at 34.1 pounds, which is around the 50th percentile. Dr. McKay said he wanted 4-8 pounds, and Corey complied by giving him 4 pounds since his previous visit. Corey's height is 39 3/4 inches, which is 25-50th percentile, and better than expected. Dr. McKay wanted 2 inches, and he got 3. That's my tall, lanky boy!

Corey also had 4 shots today, which he didn't care for, but he was excited about the treats he got afterward. Shots included DTaP, IPV, MMR, and Hep A. Additionally, Dr. McKay asked Corey many questions, commenting on how articulate he is. Overall, Corey's doing very well. Always good to hear.