A small, tentative sigh of relief...

Today was the first time I didn't accompany Kris to our ultrasound because I was scheduled on a session. It was hard waiting here at work for the phone to ring with our latest exciting Thursday update, but I have to admit I didn't miss being in the darkened sonography room staring at that screen filled with fluid squiggles. Each ultrasound we've taken so far has produced a startling or concerning revelation; the mere sight of that black and white screen evokes a Pavlovian sense of panic in me.

But Kris just called to tell me that today's session has actually revealed our first bit of good news in many weeks. The mass in Mr A's chest is the same size as it was last week, while Mr. A himself has grown! If you remember, this stage of gestation is when the cursed CCAM tends to grow exponentially, plateauing (in general) around week 28. The doctors say that if the mass is the same size three weeks in a row, they consider it to have stabilized. We are at week 23!

This means that our baby's all important CVR (the ratio of the size of the mass to his cranium) is still below that risk threshold of 1.6, and dropping. There is still no sign of hydrops or heart failure, and if in fact the mass stays the same size, that risk will continue to decrease.

What this means is that if the mass is the same size next week, they will consider the mass to have stabilized and we can resume a normal course of monitoring for this pregnancy. No more weekly trips to CHOP, just normal visits to Kris' OB/GYN. We can most likely deliver at our hospital instead of CHOP. Mr. A will definitely require surgery to resect the lobe with the mass in it after he is born, but if this holds steady, they'll do it when he is about a month old and he'll only be in the hospital for about three days. Effing medicine!

We're not out of this yet, friends, but this day just got a whole lot sunnier for the Kennedys. I can say that I believe with all my heart that all your love, thoughts, prayers, vibes (whatever you want to call it) have played a major part in getting Mr. A, Kris and I through this. I want to hug all of you and buy you a tasty soda.

The Next 6 Thursdays

Quick update. We will be following this up every Thursday with a quick ultrasound to measure the growth of the mass in Mr. A's chest. As you may expect, I now dread Thursdays. Today's weather was beautiful, and it precedes a four-day weekend, but I'm still a nervous wreck.

Well, the mass has grown a bit, but they say they expected that. Its "volume ratio" has increased as well, but it still sits below the number that would cause concern. We are now locked in a race not so much against time as a race with time. These lesions tend to stabilize and stop growing around week 28, so growth is ok just as long as it isn't too much growth. In that case we'll need to take other steps to manage the mass.

Well, I'm going to go sit in the backyard and drink an Anchor Steam and try to shake off the anxiety of another Thursday. See you all tomorrow night you know where.

Not out of the woods, just slightly less scary woods

Everybody's good vibes via text and Facebook and other magical internets were felt, heard, and appreciated today. They certainly helped my anxiety from completely overtaking my brains and making me run through a wall. Poor Kris: a one hour MRI and two 2-hour ultrasounds. Whoa. Here's what's up.

Basically, the way we are approaching this isn't much different from before. We just just have a better idea of exactly what is going on. The CCAM (see earlier post) is a hybrid lesion, meaning it is made up of a mass that has its own blood supply and other, smaller cystic lesions. This doesn't really impact the management of it. Yet.

Right now, the mass is large, but not large enough to cause immediate concern (i.e., heart failure). He will be measured every week; they say the mass should plateau and stabilize around 28-30 weeks. Then it should stay the same size as the baby grows and will be dealt with after he's born. They assure us the "vast majority" of cases behave this way and are successfully treated after birth.

(Side note: when I was a medical copy-editor, the phrase "vast majority" used to drive me nuts because it's either a majority or it's not, amiright. The "Vast" in "Vast Majority" used to get a violent slash from the red pen. I hereby retire my grudge against "vast majority" because I'm liking the odds on "vast" right about now.)

Of course, the lesion could not behave like the vast majority and cause some problems down the road. Additoinally, the fact that we have identicals with one placenta could cause problems. But right now, tonight, we can relax a little bit.

Also, CHOP is sick. I have complete confidence in these doctors, nurses, technicians, and technology. Although we have carved out the tiniest sliver of odds by pulling down monochorionic identical twin boys with one presenting hybrid congenital cystic adenomatoid malformation/bronchopulmonary sequestration...at least we live in the right town for it.

Tonight, I dream in ultrasound.

Thanks for your love and good thoughts. Check these dudes out.

Approaching Tomorrow

I'm not expecting to get a lot of sleep tonight, as tomorrow is the day we take this whole show on over to Children's Hospital for an extended day of tests and waiting. Throughout the course of this pregnancy, we've yet to have an ultrasound that didn't reveal a startling surprise ("you're having twins but they're fraternal and each has their own placenta. Congrats!"; "You're having twins but they're identical and they share a placenta! Good luck!"; "We're concerned about Baby A...he has CCAM. Um. Sorry.")

So you'll forgive me for approaching tomorrow with a touch of trepidation. We'll be enjoying an MRI, a fetal EKG, genetic counseling, in-depth ultrasounds, and finally a diagnosis and consultation with our new team of specialists. I'm taking comfort in the fact that we'll be in the best possible hands for our situation. Of course, I am hoping for some kind of good news; if not "we think it's going to clear up on its own" then at least "we are confident that this can be treated and the baby will be fine."

Tonight I'll just try to have a clear head and not twist my mind into a spiral of worry. Like the man said: tomorrow never knows.

Refocus

It's strange how quickly the focus of your life can change. Prior to last week's news, my main concern was worrying about how I was going to pull off being a parent. Oh my god, will I be a good dad? Everything's going to change! I suppose, in retrospect, I was really just being selfish. What I really was worrying about was whether I would be willing to do what was necessary to be a good parent. Wondering if I would be sad, confused, possibly even resentful about the changes to the structure of my life that would need to be made. And I realize now how self-centered my thinking was, because today, on this Monday after a beautiful and anxious weekend, all I want in the whole world is for these two mystery men growing in my wife's belly to be born healthy and safe. If our hopes are realized and that happens, I know now that there is no change or sacrifice I wouldn't make to my life for these guys. So, if there is one bright kernel of positivity than can be extracted from this whole situation, it is this: I now realize just how very much I want to be a father, and I know that I will be a good one. Now let's do this.

The way Kris and I relate to our pregnancy in the context of this new medical diagnosis has completely changed. What was once giddy and exciting is now tinged with anxiety and fear. Things we were looking forward to are now dauntingly scary to us, such as the idea of preparing the nursery. What should be a loving and hopeful act now comes loaded with the specter of heartbreak and instead of just being able to enjoy creating this room for our children, we must consider the possibility that there will be no one to inhabit it. It's a crushing thing, and I know we just have to put it out of our heads. Flip side: imagine the joy we will feel if we are able to bring home two healthy, happy whippersnappers. Egads, it's enough to make me wish I believed in something to pray to.

I hate it when a doctor says the word "concerned"

Well, first the good news: two identical twin boys! Inasmuch as two identical Kennedy boys are good news to anyone. If what they say is true, and babies behave the way they do in the womb, then we have two future terrors on our hands. In the ultrasound they were literally boxing each other. Well, kicking and jabbing at least.

Here is the hard news. One of the babies (we affectionately call him "Baby A") was diagnosed with what they call Congenital Cystic Adenomatoid Malformation (CCAM). Basically, there are lesions or cyst-like growths in the lower lobe of one of his lungs. No one knows the cause, but it is very rare (we are really hitting all the long odds with this pregnancy: .4% chance of identical twin boys, 1 in 35,000 chance of CCAM. Powerball, here we come).

What this means is that he and mom will have to be very closely monitored. There are several different treatment options depending on the type of growth he has. They say most babies are able to be delivered normally. After about a month they will go back into the hospital and have the lesion surgically removed. Because babies are made of magic, the lobe they remove will grow back and baby has to potential to be the next Michael Phelps or Placido Domingo because that lung will be good as new. Don't quote me on that though, I'm not a doctor just an optimist.

The problem arises when the lesion grows too big or fills with too much fluid. This takes up space where the normal lung or heart should be. This is no good. It could result in all kinds of problems for mom, and could lead to heart failure in the baby. They have several unbelievable options for treating this outcome: surgery on the fetus to remove the lesion before birth, shunting the lesion to drain it, or using a needle to drain it. Is this the future?

Of course, because his brother and boxing partner is also in there with him, this all becomes much more high risk for the four of us. Luckily for us however: even though this condition is very rare, there is a center dedicated to its treatment, and it is here in Philly at CHOP. So if anyone ever hears me complaining about living in Philly again, give me a slap. These guys are the best in the world. We go for a full day of tests on Thursday, and should have a clearer idea about what our course of treatment will be.

I want to thank everyone for all the good vibes and kind words. This is going to be a scary couple of months for us, so bear with us. Your love and kindness will get us through. Special thanks to CL, an old friend and pediatrician who buried a very old hatchet I bestowed on her a decade and a half ago and took a late night call from me to calmly explain all of this and talk me off the ledge.

I'm still going to plug the Audible show on the 22nd! BE THERE.