A healthy heart and a growing mass

A little muscle-flexing action from our little warrior :)

This week was our first set of appointments since our CCAM diagnosis. We first met with a cardiologist on Monday and had an echo cardiogram done. This was to look at the actual functioning of the heart in greater detail than was done at our other ultrasounds.

At our first ultrasound, our doctor hinted that there might be a ventricular septal defect (or VSD) which basically amounts to a hole in the septum of the lower chambers of the heart. Immediately my brain went "Eeeee!", but he assured us it wasn't certain, nor did it mean anything horrible. Our cardiologist told us she couldn't find it, and didn't think it existed. Huuuuge relief. Furthermore, she told us everything was structurally sound, and the heart was functioning just as it should (aside from being pushed over to the other side of the body). It was still oriented correctly, the arteries leading to and from it were in working order, and she went as far to say that there shouldn't be any complications in terms of the heart after birth. Again... huuuuge relief! This meant that aside from this CCAM, baby looks healthy. Once the mass is removed/shrinks/whatever, we won't have any heart issues to deal with.

Our second ultrasound at Froedtert was today. Again, we were told that there was no evidence of a VSD (yay!). We were also told that the mass had grown since our last appointment two weeks ago. I wish I could remember the exact measurements, but they escape me at the moment.

There was a moment at our first ultrasound that the doctor asked the technician if she could get some ratios for him, and she replied right back that she already computed them. It was pretty funny, and although I remembered what she said, I couldn't catch what it meant. 

Basically, this ratio is used to predict how likely hydrops is to occur.  Hydrops is when fluid collects around various parts of the body due to heart failure. The ratio, or CVR, is computed by taking the size of the mass and dividing it by the circumference of the head. Our ratio at our first appointment was 1.2. Today it was 1.3.  Although it went up, our doctor told us that 1.6 is the red zone. So, we're still ok. Our cardiologist told us that there was an "insignificant" amount of fluid around the heart currently. So, while this sounds pretty scary, we're still good.

We were told, and I read, that growth is likely, so we shouldn't be alarmed or worried when we are told at every appointment that the mass has grown yet again. This is to be expected. I'm kind of at the place where "high alert" is the new norm.

We're still scheduled every two weeks for an ultrasound, and in a month we'll be meeting with a pediatric surgeon to discuss potential outcomes for the baby. If things start looking a little more stable, we might cancel future appointments, but again, there is no way to predict what will happen (definitely the most used phrase in the past month).

We also discussed (briefly) things like steroids to help shrink the mass, the fact that I might be induced or undergo a c-section, and the fact that I might give birth at Froedtert in case baby needs help after birth. While I wouldn't mind delivering at a different hospital, being induced or getting a c-section freaks me out. My body labors so well (contractions for a little while, 4-5 pushes, and BOOM, baby) that I really hope we can go that route again. Obviously, this would mean baby is doing ok, but the selfish part of me wants this to happen per usual just for my own sanity. I know, totally selfish.

But again, no way to know right now.

Maybe it's my typical post-clinic mood, but I think I'm accepting of the fact that this isn't good, but it isn't bad either. The unknown is ok. We have a long way to go, so as long as nothing devastating happens, we can dig in and get through the next couple of months. I feel super confident in the staff, doctors, and our family.

Yup, I think it's probably just my post-clinic mood. Give it a week or so and we'll see ;)

The Waiting is the Hardest Part - Waiting for More News

Firstly, I want to thank everyone who sent me love after my last post. It means so much to know we have so many people in our corner! This post is kind of more like a diary entry, and I'm not trying to give the impression that your wishes have been in vain. They have given me a lot of peace of mind in some of the harder moments so far. Thank-you so much again!

Part of me really hates writing these crappy introspective posts about anything negative, because - well sometimes it feels like a bunch of emo bullshit and opens the doors for all sorts of nonsense. But, I'm also a girl, and I think there are a lot of us who appreciate transparency displayed by other girls - and moms are no exception.

If I had tried to write this last week it definitely would have come off as some sort of hectic inner conversation of a person on the verge. I won't go as far as saying I'm not crazy (I should never really say that, to be honest, haha), but I don't want to pretend like I'm all sunshine and positive energy either.

After we got the news two weeks ago that baby had a CCAM and needed to be monitored more closely, I've been on a roller coaster - more of a roller coaster than is normal with pregnancy. I felt definite relief and hope after our level two ultrasound. Baby looked okay, other than this giant mass pushing its heart to the side.There was hope and lots of possibility for a good outcome, but a lot of time and unknown in the meantime.

The time and unknown have become my enemies.

You get pregnant, and you don't think about anything else but this baby growing inside of you. You know him or her, you love him or her, and he or she is like a little magnet attracting all of your thoughts. This isn't always the case, but it's always been the case for me. This time was not an exception. The problem was there were so, so, SO many more things to think about when it came to baby, and time slowed down to a freaking standstill. Worse than the last days of pregnancy, and we all know how mind-numbingly slow that time passes.

I was speaking with a friend, and the concept of "what are the odds" came up. If you've ever had something bad, something improbable happen to you, you know that the odds don't mean shit. You know that it can give your mind some relief to know that things aren't likely, but you still know that any possibility is possibility enough.

It's been a relief to hear so many instances of parents having situations similar to ours, and the good outcomes associated. But there is also the irritating small details, like the fact that we're still on high alert about this mass, and that we have little room to work with (literally). It's gotten better to handle, but I still can't shake the fact that this could have a very unhappy outcome.

It's almost pathetic when I type it, but it's true, so I'm going to just go ahead and leave it there. I know that we're in amazing hands, and I know that we have so many people who care about us. And that means all the world. But I'd be lying if I came out and said I'm always thinking good thoughts and have complete faith.

I don't want this to come off like I'm sitting here thinking myself into a deep, dark hole, but I don't want to give people the impression that being strong means ignoring the bad moments. It has helped me to hear that others have been in those moments of "What the hell?" and come out ok. Because I have a good feeling there are going to be a lot of those moments in the upcoming months.

Right now we're basically getting a new prognosis every time we go in for an ultrasound. We're looking for one of two things, and our next steps are always unknown until we know more. That has probably been the hardest thing to handle.

We have an echo cardiogram tomorrow and then another ultrasound on Wednesday. I'm already more nervous than I can describe. I go between hope of getting good news and trying to steady myself in case that doesn't happen. It will definitely be another long couple of weeks either way.

Again, I want to thank everyone for their positive thoughts, and I hope this hasn't given the impression that they were all for nothing, because they have meant a lot.

Time and the unknown - two things I've never been good at managing, but I guess it's about time to start learning!

Lots of love to you all!

Not what you want to hear after an ultrasound...

I'm writing this story mostly because it helps me to. I started blogging as creative outlet just to get the mumble jumble out of my head and onto paper... er, screen.

I'm sharing this story mostly because I want to get a lot of the questions that I'm sure are to arise out of the way. I love my friends, I love my family, but telling this story the handful of times I've had to has already exhausted me. If you're not on our shortlist of people we contact, you can find any updates here. I mean absolutely no offense by that -  I'm just trying to maintain a little bit of sanity ;)

I'm also sharing this because I was the mom sitting on her computer after the numbness of a phone call wore off. I was researching to cope. I found stories other moms had shared that were full of hope. If any mom happens to be doing any searching and stumbles across my blog in search of hope, I'm glad to offer it.

We had our 20 week ultrasound for baby on the first of March. A couple hours after we left, my doctor called saying that something looked wrong with baby. It appeared that there was a cyst in the chest cavity, and it was pushing baby's heart to one side. I needed to get in for a level 2 ultrasound in Milwaukee the following week. I called the clinic to arrange an appointment, but they weren't able to schedule me right then. They promised to get a hold of my regular clinic on that following Monday to schedule. It was the longest weekend of my life.

The Hubster spent the weekend trying to remind me that baby would be born into a loving family - one ready to take on anything. I knew his words were true, but I couldn't help shake the insta-depression that sank in once I realized that something was wrong with baby.

I spent the weekend online, researching with the tiny amount of information that I had. The way I saw it, the spectrum ranged from fetal death to something that could resolve itself before birth. In a very condensed form, Trisomy 18 was on the top of the list (basically comes down to a chromosomal disorder incompatible with life), and CCAM, which is something that is scary, but manageable and can go away on its own. I was crossing my fingers and toes for a CCAM  diagnosis. Although it was terrifying, and would be terrifying for many weeks, it was the best option of everything that could be wrong.

Monday came, and the nurse (who is amazing, btw) from my clinic called and told me she had arranged my ultrasound in Milwaukee for the next day. I thanked her and spent an anxious night knowing we would soon have more to go on.

Our ultrasound was at Froedtert in Milwaukee. Seeing the massive campus, driving by the Children's Hospital, calmed my nerves. I knew we were in the best hands, and very close to home.

After getting weighed, being asked a handful of questions, and getting my belly all lubed up, the ultrasound started. Our technician was very factual and kind, and told us that indeed there was something pushing baby's heart to the side, but it wasn't a cyst - it was a mass. A cyst is fluid-filled, and a mass is more solid. This made my heart drop, but she didn't seem too worried, so I listened to her as she moved on.

This was the part I was dreading - after reading everything I could on Trisomy 18, I was looking for any indicators. Searching the baby's feet, the hands, the brain. I smiled as we looked at baby's brain - it looked fabulous (then again, I'm partial to brains). She moved down the list, and told us everything else looked normal. I breathed a huge sigh of relief knowing that, so far, this was looking pretty bright considering what we could be facing.

The doctor came in and told us this was a pretty-straight forward CCAM. So, what is a CCAM? In a nutshell, it occurs when the lungs are forming, and for an unknown reason, some tissue goes a little haywire. Tissue forms a cyst (fluid-filled) or a mass (solid) and can grow. If it grows large enough, it can begin to move things around. This is what was happening to baby. The mass was large enough to move his/her heart to the other side of his/her body. 

Sounds terrifying, right? Well, occasionally, these cysts/masses stop growing, and some even go away on their own. Like, POOF! Gone. No problems. That's almost too much to hope for, but we were told it is very possible, and there is a lot of hope for such a great outcome.

On the other hand, it could keep growing and cause heart failure. If we were to reach such a stage, we do have some options as well. Right now we're not looking at heart failure, which is awesome. But the mass is enough to be moving the heart - so we're on alert for sure.

Week 28 seems to be the magic week when the growing halts, and things start to normalize. We are obviously hoping that this is the case. I'll be going in for many ultrasounds in the meantime to monitor everything. There is another possibility that baby will need surgery sometime after birth, but they do it right there, and have done it many times.

This is obviously a pretty scary time in which nobody knows what's going to happen. I do know that we loved this baby since we first found out it existed. It has a place in our family. The road is going to be rough, but we're ready to endure it. We have what we need, and like the nurse told us repeatedly, there is a lot of room for hope.

I want to thank my family and friends who have already offered many prayers, thoughts, and advice for me in just the few days we have been dealing with this. It makes all the difference when you're not even sure where you are. I'll try to keep this updated for anyone who wants to know how things are going, but don't be surprised if I get all introspective occasionally. ;) For now, keeping baby in your thoughts, prayers, or making side deals with gypsies for his/her health would be greatly appreciated.