A Tiny Heart

This is the story so far. Today is 6/23/2012.

SUA

I don't remember exactly which ultrasound it was, but at some point the sonographer said "Oh, you have a 2 vessel cord." Ok? No idea what that means. She said that it means I have a single umbilical artery (SUA); that my baby's umbilical cord only has one artery instead of the normal 2. Ok. So what does that mean? She said that I shouldn't worry, that it affects about 1 in 100 pregnancies, all it will probably mean is that I'll be getting more ultrasounds to check the baby's growth. Of course me being a compulsive worrier and what-if-er, I wondered what else could be wrong with the baby. In the back of my mind though, I thought, like most people probably do, "I'm sure everything will be fine."

First Echo

In April they sent us to a high-risk OB office to get a more in-depth ultrasound and an Echocardiogram of the baby's heart. I guess having a SUA means that there could be an increased risk of heart abnormalities so they automatically do these tests just to rule anything out. Everything looked pretty good at this point except they couldn't see the baby's Atrial Septum (between the top two chambers of the heart) clearly enough to be confident. They said we would need to have another one in a few weeks once I was a little further along, so the baby would be bigger and they could more easily see for sure. There was a possibility that he could have an Atrial Septal Defect (ASD). Ok, getting pretty worried but still thinking "I'm sure everything will be fine."

The Bomb Drops

In May we had our follow-up echo. I don't know why but I just knew, I had this feeling that everything was not right. You can tell on the sonographer's face that they just aren't seeing what they hoped they'd see. This appointment was torture. I think it was over an hour that they were poking and prodding at my belly trying to see every detail of the baby's heart. I tried to keep my composure as two sonographers and the dr. loomed over me, and Steve held my hand next to me. I can't tell exactly what's going on with the technical terms that they are using to talk to each other through the test. I just know that there is something definitely wrong. After a while everything turned into a blur and their voices turned into mush and I just waited for it to be over.


The doctor sat us down in a room across a desk from him, and began to tell us about the several structural abnormalities that they found in the baby's heart. That he would need open heart surgery right after birth. It was a lot of information, and a lot to take. I don't think I could even fully comprehend things at this time because I was of course completely in shock and crying and shaking . . . I just couldn't believe this was happening. We had to go home and call our family and tell them. For all the worrying and what-if-ing that I did, I never seriously thought there would really be something wrong. Everything was not fine after all.

Cardiologist

5/14/2012, a few days after having this huge bomb dropped on us, we had to go to a pediatric cardiologist so they could do their own echo and make their own assessment, etc. I had this thought that maybe since they were the heart experts, that they would see something the other's didn't, and everything might be fine after all. Once they were done we again sat down in a room and the doctor began explaining their findings. She began by saying that they did not see any structural abnormalities like the other doctor did. I had this wave of relief wash over me. But it only lasted a minute. She then began to describe how the baby's heart function was the issue. That his heart was enlarged, had thickened walls, and was not pumping as hard as it should be. It's a very rare condition called dilated cardiomyopathy, and his is pretty severe.  And there is no cure. The only chance of survival is a heart transplant right after being born, and he would have to be on life support (called Ecmo) while waiting. He might not even survive to be born. All I kept thinking was that I couldn't believe it was actually worse news. I didn't think it was even possible that it could get any worse.


I'm not even going to try and describe how it feels, because I can't. It was so overwhelming, so incredibly overwhelming. Information overload. Emotional overload. Devastation. Our appointment was the last of the day so by this point it's like 6pm and the drive home is over an hour (we had to go to a different location than we would normally go to, due to getting squeezed into the appt. at the last minute). When we finally get home we have to once again call our family and tell them the news. At this point I'm not even able to grasp the full breadth of implications this will have on our lives. That part kind of evolves over time.


The high-risk OB and pediatric cardiologist will now assume responsibility of my prenatal care and a bunch more appointments and tests are scheduled. I'll now be going to the cardiologist every other week to check the baby's heart, and I'll also have OB appointments every week. Oh and labs. Lots of labs. Did I mention I hate having blood drawn? Well I'm going to get used to it.

Digoxin

After a couple of weeks we have another echo with the cardiologist. The baby's heart function has gotten a little worse since the last time. The doctors had prepared us for this so, it's what we were expecting. They decide to put me on a medication called digoxin to help the baby's heart pump harder. They have to give me a higher dose than if I was taking it for my own heart, so that way enough of the medicine will make it's way to the baby. The amount of the medication in my blood has to be very closely monitored because it's very easy to develop toxicity. So that means I'll be going to the lab often. 


The good news is that my OB appointments show that the baby is growing and thriving just fine so far! I can feel him moving around all the time, his heart rate is always good, and from the looks of it everything else about him is normal. His little heart just doesn't pump very hard. Due to the structure of the fetal heart and circulatory system, he somehow has been able to still get enough blood and nutrients around to the rest of his body, and he's doing ok being attached to me! It's when he comes out that he will face the real challenge of having to do it all on his own.

A Tough Decision

On 6/11/2012 we met with the heart transplant team for a consultation, to find out everything that would be involved. Throughout this process I have made it a point to ask a million questions, keep myself as well-informed as possible about everything that is going on, what are our options, what could happen, etc. I didn't realize until we had this consult, the true gravity of the situation, of what it would take to (maybe) save our baby. I won't go into it all but just know that it is a lot, in every way imaginable. 


Ultimately, Steve and I made the decision that a heart transplant was not the right path for us to take. The decision was made easier only by the fact that we are 100% in agreement and on the same page about this. So, what does this mean for the baby? Well, it means that we are going to lose him. 


Our goal now is just to keep him inside for as long as we can, so that he can grow and develop as much as possible before he comes out. There is still the possibility that he could die inside me, and that would of course be the most terrible outcome. Our hope is that he can be born and we can spend as much time as possible with him before he passes. "Comfort Care" will be provided in the hospital to make him and us as comfortable as possible. They will give him medicine and likely a breathing tube, but we don't want any severe interventions. When he is ready to go, we will let him. The doctors have made it clear that we really have no way of knowing how long that will be, it could be hours, days, maybe weeks. We still don't know how his diminished heart function will progress throughout the rest of the pregnancy. So it's just a matter of continual monitoring and seeing how it goes. 

Hospital

6/12/2012 - I've been on the digoxin for less than 2 weeks and a few blood tests have shown that my levels are right where they need to be, but I haven't been feeling right, and in the last few days it's gotten worse and worse. I'm extremely weak and tired, short of breath, my vision is blurry, it's hard to focus on things, I'm having palpitations and fluttery feelings in my chest, feeling a bit nauseous, having hot flashes - I just know something is not right. All day at work I keep going back and forth between thinking I'll just wait it out and thinking maybe I should go to OB triage. Finally I decide ok this is enough let's go to triage. 


They end up taking my blood and what do you know, it comes back that my levels are high. It's supposed to be between 1 and 2 and I'm at a 3.3. They don't know how it got so high but I guess just everyone processes the medication differently. I'm feeling relieved that at least I know the reason why I've been feeling so bad. I figure they'll just adjust my dosage but then I hear the doctor say they're admitting me! They have to keep me for observation until my levels come down because digoxin toxicity can cause heart arrhythmias that could be serious. I'm scared and really upset because all I want is to go home and now I have to spend the night in the hospital, and I might have hurt myself with this medication.  
  
It's pretty late in the evening by the time I get settled in my room, I'm hooked up to a heart monitor and given an IV line in case they need to administer anything. Steve had gone home to get me some clothes and a few other things, but now he's back and he brought me dinner. My mom came to visit after work. Steve went home for the night - I didn't want him to stay and have to leave our poor doggie in her crate all night :( My friend Sara's husband West is a nurse at the hospital, and Steve had run into him, so he stopped by to visit as well. Later around 10:30 I wasn't asleep yet so Sara came to visit, I was hungry so her and West got me some food from the cafeteria and hung out with me on his lunch break. Sara ended up spending the night in my room with me so that was nice knowing that someone was there. I still couldn't sleep all night though. 


The next morning Steve came back really early and brought me breakfast, and we were wheeled to our appointment that we already had with the cardiologist (luckily his office is on the same campus as the hospital). Once again the baby's heart had gotten a little worse. Back in the hospital they gave me a steroid shot to help the baby's lungs develop faster since the dr. thinks we might end up having to deliver him early. The neonatologist meets with us in our room to touch base and begin discussing our preferences for when we deliver. We sit around the room all day while people come in and out to do one thing or another to me. Finally they come back and say that my digoxin level is back to an acceptable range and my heart is doing ok so they can discharge me. I will now start taking it only twice a day instead of 3 times. I finally get to go home at like 5pm.

Appointment$, Appointment$, Appointment$

One aspect of this that is really frustrating is how many appointments I have. Sometimes I feel like I'm at one appointment or another every day - sometimes that's actually the case! (The week of the hospital I actually went to one appt. or another 7 business days in a row - oh and did I mention we went to the hospital for childbirth preparation classes on Saturdays?) I'm at the OB twice a week, the cardio every other week but that will go to every week I'm sure. I have to leave work for most of my appointments, which Steve cannot always do so I'm going alone. It's just so overwhelming to keep track of everything. And the cost - a specialist co-pay every time.  Which doesn't count towards our deductible or out-of-pocket max. Did you know it apparently costs $375 (that we had to pay) to administer a damn steroid shot? I don't even want to talk about the cost of staying one day in the hospital. I mean, at least we already knew we were going to hit our out-of-pocket max so, I guess it doesn't really matter. 

No More Digoxin

After being back on the digoxin for a few days at a lowered dose, I began to feel bad again. A blood test showed that my level was ok, but I just wasn't feeling right. I couldn't sleep all night one night because I was having such bad palpitations. I'm just laying there and my pulse is over 100 and all I can feel is my heart just pounding and pounding. I can't even walk up the stairs once - slowly - without feeling so out of breath that I need to sit down and I can't even really talk. All of my doctors consulted and came to the conclusion that we really don't even know if it's helping the baby at all, and it's certainly not making me feel good, so it was best to just stop taking it. I am afraid of this causing the baby to get worse faster than he might have otherwise, but I just felt that ultimately my health is more important and I didn't want to cause any further risks to my own heart. I've been off it for like 5 days now and I'm feeling so much better already.

How Am I Doing?

Surprisingly, I've been doing better than I would have expected. I've been going to work every day, and it's been helping me to just get through each day as normal as possible. I think mostly I'm playing the avoidance game. Or maybe I'm just in a numb/shock state still. Survival mode. I try not to get myself started because then it's hard to stop. So I just block it out. I've been taking xanax now and then, the dr. said it was ok and even encouraged me to feel free to take it if needed. It's important to keep me healthy and sane. It's getting harder and harder though. I cry at least a little every day, even if it's just getting welled up a bit and letting a few tears fall. I sit in my cube at work and cry and hope no one comes by until I can pull myself together. 


Social situations are hard because not everyone knows what is going on, and people naturally want to ask questions and get excited about the baby - just like I would do if I was them! It's not like I can just lay it on everyone who asks, not that I even want to talk about it most of the time, and I also don't want to like, lie or be dishonest in any way, but I don't know what to do. Now that I'm pretty far along people want to ask about a baby shower, and have we gotten the baby's room all ready yet, etc. It's just hard. I try to avoid it. Eventually everyone will know, when we don't have a baby around. I guess that's one reason why I'm writing this. If you're reading this, now you know. Now it makes sense if you thought I've been acting weird :)


Ultimately, we are getting through it. The outpouring of support has been tremendous and touching. I have a hard time reaching out for help but I'm getting better, and I know I'll need it. Because this is only going to get worse in the months to come.