Here it goes .
At our first midwife appointment we couldn't hear a heartbeat. I expected that outcome because of my tilted uterus and it was only 11 weeks. Midwife thought I seemed smaller than 11 weeks and ordered an ultrasound to confirm dates. First ultrasound showed us about a week ahead and showed some nuchal translucency. Temporary panic ensued, but DH and I agreed we didn't want to do any screening or genetic testing. The radiologist updated later that day that he didn't think it was nuchal translucency, so things calmed down.
Fast-forward to the 20th week anatomy scan. It was a very short scan. They told me to plan for an hour, and about 20 minutes into it the u/s tech declared us done. When we met with the midwife, she had nothing to say except that the scan was not good and that she thinks we should do an amniocentesis so they can decide where to refer me, but that best-case scenario it would be Down's Syndrome. She said the nuchal translucency they saw (and then said they didn't see but apparently did see) at the earlier u/s had increased and they observed a heart defect, which often means chromosome trisomy. Since I am terrified of needles, and under the "threat" that none of the specialists would see us without the amnio results, we had an OB do the amnio right then.
A week and a half later we finally heard back that the preliminary result showed normal, but the OB had no advice for what would be next. I was rather confused, and frankly quite angry that there had been such a commotion and then because our baby wasn't chromosomally abnormal, that everything was back to a-ok without any explanation.
3 weeks later I got a call to confirm my appointment with the perinatologist (surprising since no one told me what was going to happen, much less that they had scheduled an appointment for me 3 hours away). Of course I went, though! The following week I was in the perinatologist's office for a 2-hour long ultrasound and fetal echo-cardiogram. I could tell there was a problem just listening to the cardiologist and the u/s tech try to navigate baby's heart.
To the point:
In the end, they diagnosed
* enlarged right atrium and ventricle,
* leaking tricuspid valve (most likely a side-effect of the enlarged right heart),
* abnormally small PDA (possibly the cause of the enlarged right heart),
* ventricular septal defect (a hole, not too uncommon),
* fetal hydrops (edema/fluid accumulations around the organs and under the skin),
* and they were unable to see any fluid in baby's stomach, so he might not be drinking the amniotic fluid which would mean too much could accumulate and that lung development may be delayed. Or he was in a bad position and they just couldn't find the stomach? They did take pictures of it at 20 weeks so I don't know what's up with that.
The whole time they explained this all, I felt like I should be having more of an emotional response, but I just absorbed the information like they were talking about someone else. It was very strange. I'm pretty sure I even smiled at them as they dropped these bombs.
The heart stuff is all most likely treatable by drugs and/or self-correcting. In the event it's not, they likely wouldn't need to do any surgeries immediately upon birth. So really, it doesn't scare me too much. It sounds survivable. It sounds like a baby who will grow up getting to do all the "normal" kid things without restrictions.
The hydrops, though, is a sign of heart failure. I don't know how I didn't break down into a puddle of tears when the doctor told us this.
Then they proceeded to tell us that the edema seems worse than "just a heart problem" but since the typical causes (Rh incompatibility, chromosome trisomies) obviously aren't a factor, they don't know what it is and can't give any estimates of what may or may not happen. So they didn't tell me numbers, except to say that if baby is premature at all, he has little or no chance of survival. They seemed optimistic about what will happen if baby is full term. I Googled (always a mistake!) and it seems like 50% of babies diagnosed with fetal hydrops don't survive to birth. Why oh why did I Google??!
So I go back in 2 weeks for follow-up to see if the edema is increasing or holding steady. I go to my “regular” clinic (though I have to see the high-risk OB instead of my midwife now) for weekly ultrasounds to monitor baby’s edema, the amniotic fluid levels, and my overall health since fetal hydrops is associated with complications for mom. The perinatologist described concerns about developing maternal swelling and high blood pressure (or what sounds somewhat like preeclampsia).
If there’s an amniotic fluid over-accumulation (I have no idea what this would be called) they could have to do another amnio to drain the excess. In that case, they would have specimen to test. In the mean time, they don’t want to do another amnio just to be able to do more tests because of the risk to baby. Thank heavens!!
Though there are good doctors available in town (two major hospitals) most of the perinatal specialists are here on a rotating basis (i.e. once a week or every-other week), so I have to transfer care down to the remote hospital 3 hours away once we get closer to birth.
It’s not too bad, since my parents live about 15 minutes from the hospital I will transfer to so I can stay with them for the wait. Most likely my employer will let me work remotely, and if they don’t I will just start burning through sick leave since I must have 4 or 5 months of it accumulated by now. At the follow-up appointment in 2 weeks I’ll get to find out what kind of timing they expect for the transfer, but I assume it wouldn’t be until after 35-36 weeks (if baby comes sooner, they will airlift baby or us both, depending if he is literally born first or not, to the remote hospital).
Emotional blabbley blah:
As much as I want this baby to stay in as long as he possibly can, it will be a long, long 2-5 weeks without DH in April and it makes me rather sad to think about. I especially feel bad for him, since he would be home alone whereas I would at least have my parents. Heck, I could even get to reconnect with friends I haven’t spent much time with since I moved these 3 hours away!
I also wonder about DH being there for the birth. I assume my chances for a C-section are increased with all these fun complications, and if it ends up to be by emergency and he can’t drive down in time, I don’t want to think about how scared I’m going to be in that darned OR. And even if it's a "regular" birth, as normal as one could hope for given the circumstances, his not being there with me until 3-4 hours into it is ... interesting to think about, at least.
Mostly right now I’m counting every single day. I don’t get out of bed until I feel baby move some. I don’t go back to sleep until I feel him move at night. He doesn’t move as much as he did a month ago, and it really, really, scares me. It scares me to the point I don’t want to buy any baby supplies at all. I have unsubscribed from most things that email me about anything baby-related because I’m afraid of having to see them if something goes really wrong. I’m trying so hard not to think about this baby not making it to April because I know it doesn’t help him at all, but it’s very difficult. I hope it’s just a phase, his reduced dancing. I kindof feel bad poking at him to make sure he still responds, like maybe I’m asking too much of him.
DH is somewhere between refusing to talk about it and insisting the doctors are overreacting and overmedicating the problem. He could be somewhat right--weekly ultrasounds do sound ridiculous.
But I know I’m not the first to go through this kind of scare. I'm trying to be brave, for me and for baby.
Hope hope hope hope tranquil, unstressful, happy thoughts .
Oh, and a medal (or flowers, there are no medals to be had on MDC emoticons I guess) to you for making it this far.