It’s baby day.

So I had written a really heartfelt blog post about how I’ll be delivering Baby Millie in almost exactly 12 hours, but WordPress dumped the whole thing once I finished it and I can’t seem to recover it. Now I need to go get some sleep. Hopefully I’ll remember what I wrote so I can recreate it later.

Baby Girl passed her very first test yesterday.

So a lot has been going on since my last post. But I don’t have the time or energy to recap all of that today. I will eventually, just not today. Instead, we’ll start with yesterday and backtrack later.

Yesterday we went in for the first of what will be weekly ultrasounds of Baby Girl to make sure she’s doing okay as our due date quickly approaches. These are shorter than the monthly level 2 ultrasounds we’ve been doing. They are called biophysical profile (BPP) ultrasounds, which are intended to measure Baby Girl’s health. They measure a number of things, like practice breathing, body movement, muscle tone and amniotic fluid volume (I guess that’s more me than her) and give her points for each. A score of eight points means she’s healthy, a score of six to eight points means we might need to be retested in the next 24 hours and a score of 4 or less may mean the baby is having problems.

Well, I’m happy to say Baby Girl scored eight points yesterday. She did really well. So well that what could have been a 30 minute ultrasound only lasted 5-10 minutes. Yay!

Of course, we all know that Baby Girl is in fact not healthy and that we are facing lots of really tough challenges in the days ahead. But for right now, in this moment, I’m choosing to take comfort in the fact that she’s doing really well in that not-so-little protective bubble in my belly that she’s living in.

The more we discover, the less we know.

These days are exhausting. I wish I could adequately explain what it’s like to lay first in the ultrasound room and then in the echocardiogram room while a team of people analyze and discuss a bunch of abstract pictures on some computer screens. It’s stressful and uncomfortable and frustrating. When they hover over one area for too long or kind of mumble to themselves about this view or that view I get worried. I told Glenn today that I almost wish I could be asleep during these appointments. Either that or I wish I could record them so I can google all the terms and abbreviations later and figure out what was actually being discussed.

Today it was more than two hours of mental torture between the two appointments. The ultrasound wasn’t so bad. Baby Girl was breech this morning with her backside facing front and the little stinker didn’t want to move much to allow better views of her heart and organs. The abdominal situs inversus diagnosis was confirmed again. But she’s growing really well and at 2 lbs. 3 oz. is right where she should be at 26 weeks. Her heart rate was 126 bpm, which is also perfectly normal. And all her other measurements are right where they should be. All good news. Also, she’s pretty cute and looks a lot like baby Tucker.

The echocardiogram was a bit more stressful. We started with someone who is apparently a student radiologist and were later joined by the more experienced radiologist we had last time. This combined with Baby Girl choosing to be in a difficult position for viewing several angles of her heart meant it was a longer appointment and we got to listen to a lot of teaching moments about “what do you think this means” and “why might we be concerned about that” and “tell me what we’re looking at here.” And then the cardiologist joined the party. By the end I had one person pressing the probe uncomfortably into my big old pregnant belly, another one running the computer and taking the pictures, and all three of them discussing and questioning what we were looking at. So exhausting – mentally and physically.

From what we could tell, it sounds like they may be seeing some of the veins they thought were missing but they weren’t able to see where they connect to the heart. It also sounds like the may have been able to see the atrial septum this time. The right side of her heart still appears larger. But, in the end, the cardiologist has decided that she is no longer comfortable diagnosing the heart defect we are looking at. She still has one, but the cardiologist isn’t ready to give it a name yet.

So the total anomalous pulmonary venous return diagnosis we had is off the table for now and we’ll go back in four weeks for another ultrasound and echocardiogram. And even then, the cardiologist seems to think we likely won’t know what we’re looking at until Baby Girl is born. The good news is that her heart has four chambers, so the heart defect isn’t considered severe so she’ll do fine in-utero, will probably be nice and pink when she’s born, and I might even get a minute or two to bond with her before she’s whisked away for tests. It’s a very small consolation, but it’s something.

Glenn is feeling optimistic. I’m still wary and feeling like we don’t know much of anything at all. And it looks like we’ll be playing this little waiting game every four weeks from now until June.

Riding the roller coaster.

Four weeks ago, on February 5, we had our second level 2 ultrasound and our first fetal echocardiogram. I had intended to write a blog post about the results, but was too emotional right after to manage it. Then life got in the way and I became overwhelmed. (So much stress, so little time.) But tonight, on the eve of our next ultrasound and fetal echocardiogram, it might be good for my frazzled nerves to get what we know so far out there.

You may remember that during our first level 2 ultrasound we were told that the baby’s heart may be positioned on the right side of Baby Girl’s chest, instead of the left where it is supposed to be. They were also concerned that we may be facing some sort of chromosome disorder. Unfortunately, we would have to wait four weeks before the next ultrasound and our first echocardiogram to learn more about her heart condition. So in the meantime, I decided to do a blood test called Verify that would provide us with more information about the potential chromosome disorders. Thankfully, the blood test came back negative – a huge relief.

The day of the ultrasound and echocardiogram turned out to be another VERY long and stressful day. During the ultrasound we were told that, in fact, Baby Girl’s heart was not on the wrong side of her chest but instead all of her abdominal organs were flip-flopped. How they got this so wrong the first time is beyond me. Regardless, assuming they have it right now, this means she has a condition called abdominal situs inverses, which in and of itself creates some complications but as long as the connections to her heart allowed for proper blood flow it is not necessarily a huge problem. We were also told that her heart looked fine.

Feeling an enormous sense of relief, Glenn asked if we even needed to go to the echocardiogram. We did. So we headed back to the waiting room to wait for our turn with the cardiac team that would do the echo. There had been a big snow storm that morning so they were understaffed and we had to wait longer than expected. As we waited we allowed the relief to turn into hope that everything was going to be fine and the complications we were facing were minor. That was a huge mistake.

The echocardiogram was attended by a pediatric cardiologist who informed us that the left side of her heart appeared slightly less developed than her right and they were having difficulty viewing blood flow in the left atrium. They also weren’t able to visualize the atrial septum (the wall separating the right and left atriums) very well. Long story short, the cardiologist suspects Baby Girl has a congenital heart defect referred to as total anomalous pulmonary venous return (TAPVR). It’s a serious heart defect, but one that can hopefully be repaired with surgery either immediately or shortly after birth.

It was devastating news. Once again we were on an emotional roller coaster. In the span of just over an hour we had gone from fear to relief and hope to terror. The good news is that if she does have TAPVR, we caught it early and the hospital will be prepared to help her as soon as she’s born. This also means there is no longer any question about method of delivery. In order to be absolutely certain the NICU and pediatric cardiac team are ready and waiting, I will have a repeat c-section tentatively scheduled for June 3.

Because the first echocardiogram was considered technically difficult and Baby Girl’s potential issues were not well-visualized they scheduled us for a follow-up in four weeks. So tomorrow we get to ride the roller coaster all over again. Whereas last time she was only 22 weeks developed (the very earliest they are able to do a fetal echocardiogram), this time she’ll be four weeks older and her organs may be easier to visualize. With any luck, she’ll cooperate by moving when they need her to move and resting when they need her to hold still.

Life has become a moving target. Each time we have another test we get new information and sometimes it’s the exact opposite of what we were told at the last appointment. I’m having trouble knowing who to trust and which results are reliable. Even when I’m given information that is positive, I’m wary to allow myself even the smallest amount of hope. But all things considered, we’re managing pretty well. There are good days and bad, but for the most part we’re all still functioning day-to-day and that has to count for something.

That being said, I’m extremely anxious about tomorrow. I have no idea whether the news will get better, worse or stay the same. And the sad, frustrating reality is we may be doing this every four weeks moving forward and still may not have any answers until she’s born. All we can do is wait and pray and try to prepare as best we can. It’s hard to believe we’re only three months away now.

Baby Girl

It’s been a long time since I’ve given this blog any attention. Life gets in the way. There’s work and parenting and housework and family and friends and volunteering and just no time to gather my thoughts for this blog. But now I need to make time. So much is going on, I need to get some of it out of my head.

Exactly six years ago today I wrote this  post on my old blog. It was an awful story to have to write, but it had to be shared. I had to get it out of my head. Yesterday, after a particularly scary doctor’s appointment, I felt all of those old feelings and fears resurfacing.

You see, Glenn and I are expecting again. A baby girl. She’s due June 10, 2014. We’re ecstatic. Especially me. It took me about a year (probably more) to get over the miscarriage, but ever since then I’ve been desperate to have another baby. Unfortunately, not long after I was ready to move on, I learned that I had a condition called PCOS, which was going to make getting pregnant again difficult.

For years I took the approach of just hoping that things would work themselves out and I’d get pregnant. No such luck. Finally, about a year ago, I heard my biological clock mercilessly ticking louder and louder, so I took matters into my own hands and found a new doc that could help move things along. I was poked and prodded, underwent uncomfortable tests, took several rounds of Chlomid (an ovulation inducing fertility drug), got a shot of hormones in my butt, and peed on countless ovulation and pregnancy tests all with the same ultimate result: negative. I was ovulating but not getting pregnant.

So… maybe I wasn’t the entire problem. It was Glenn’s turn to undergo the uncomfortable testing. Turns out, he’s not the picture of perfect reproductive health either. Now we were fighting a battle on two fronts. But we were proactive. We worked with the experts and came up with a plan that everyone had high hopes would work. And then Glenn lost his job at the end of July so we could no longer justify spending money we didn’t have on more tests and doctor’s visits.

Then, somehow, miraculously, I discovered I was pregnant in October. Amazing. We were shocked and overjoyed. But I’m older this time around and the pregnancy isn’t going as smoothly as we had hoped.

My first trimester (and then some) was pretty awful. I had terrible morning sickness around the clock and endured a couple of truly mortifying episodes of public vomiting at the worst possible times. I caught a cold, which turned into six weeks of bronchitis. I had a kidney stone. The exhaustion was ridiculous. But I was happy to endure it all if it meant we were finally going to add another little one to our family.

We waited until I had undergone two positive ultrasounds (one at 7 weeks to check for viability and the usual one at 12 weeks) before we shared our news. Our family and friends are all so excited. They know how long we’ve been waiting for this.

Tucker was thrilled to learn he was going to be a big brother. He told us he never thought it would happen. And despite the nearly nine year age difference, we think he’s going to be awesome at it. His little sister will be lucky to have him.

Everything was going wonderfully until we went in for our level 2 ultrasound last week at 19 weeks. I went into the appointment nervous but hopeful and excited to find out whether we were having a boy or a girl. (I suspected a girl.) But while the ultrasound tech was working I could tell something wasn’t right. She kept going back to try and get a better look at the heart over and over again. She told us we were having a girl and finished up, but then came back in and asked if she could have one of her colleagues take a look.

Our Baby Girl at 19 weeks.

Yep. Something was not looking right with the baby’s heart. I was devastated. We met with the fetal medicine doc and genetic counselor to go over the results. All the doc kept saying was that they were seeing some asymmetry in the heart and “see what I’m sayin’.” He was not remotely helpful. The genetic counselor was more helpful and explained that they get concerned that with any structural abnormality there is a chance the cause is a chromosome disorder like Down Syndrome or worse (Trisomy 13 or 18, which are often fatal).

The next step was to schedule another ultrasound and a fetal echocardiogram at 22 weeks (3 weeks away), when we would meet with a fetal cardiologist and get a better idea of what we might be dealing with. In order to get some answers between now and the next ultrasound,  I also opted for a blood test (Verify) that could tell us with relative certainty whether or not our baby has any of the aforementioned chromosome disorders.

And so the waiting began. I left the clinic terrified and in tears, I had a hard time even getting excited about the news we were having a girl.

Glenn was optimistic (as always) that everything would be fine and all of this would end up being a big scare for nothing and so were our friends and family. So I started to calm down (a little bit) and did my best to be hopeful too.

Then Sunday night I fell down the stairs into the basement, really hard and really fast. Fortunately, I bounced the whole way down on my butt and never rolled onto my stomach. But it was terrifying. Stupidly, I didn’t call the emergency OB line right away and waited until morning. They told me to come into the clinic for monitoring, which I did. But the nurse at the clinic wasn’t having much luck monitoring the baby’s heartbeat, so they sent me to the hospital. Again, I was terrified. I spent about four hours at the hospital with a lovely nurse who monitored the baby’s heartbeat and my uterus to see if I was having contractions. The baby was doing fine and my blood work came back normal, so after a stern warning by the on-call OB to call right away next time no matter what, I was sent home.

Which brings us to yesterday, the six year anniversary of my miscarriage. Generally, it’s not a great day for me anyway, but yesterday was much worse than usual. I went to my regularly scheduled prenatal appointment, where my OB went over the notes from last week’s level two ultrasound with me in more detail. She was very concerned both about the description of the baby’s possible heart abnormalities and another abnormality that the “so you see what I’m sayin'” doc and friends had failed to discuss with us.

This second abnormality is called micrognathia, which is basically a chin that is underdeveloped. It’s a marker for the trisomy 13 and 18 chromosome disorders. So that combined with the heart abnormalities made my doc very concerned that we were looking at a real possibility of one of the trisomy disorders. She explained that either of these would mean that the baby might not survive the pregnancy, or would not survive long after birth. I cannot begin to describe how awful it was to hear these words out loud. She discussed with me that if either of these turned out to be the case, I’d have to decide whether to continue the pregnancy or deliver early (which means our baby woudn’t survive).

I asked if, based on what she saw on the ultrasound and pending the blood test results, there was any chance that our baby wouldn’t have these problems and would be healthy. She said in her opinion, there was very little chance that we weren’t at the very least facing a serious congenital heart defect. I was devastated. The rest of the appointment felt like she was just going through the motions of listening to the baby’s heartbeat and measuring my uterus, as if there was no point to any of that.

Again, I left the clinic terrified and in tears. When I finally made it to my car in the parking ramp, I sat there sobbing for God only knows how long. I couldn’t go back to work in that state, so I drove myself home sobbing uncontrollably all the way. I was such a mess I couldn’t even tell Glenn what was going on for quite some time. After reliving it all again for him, he calmed me down as best he could while waiting to see if the blood test results would come back.

Of course, I hadn’t been out of the clinic for more than a couple of hours and the results of my blood work came back. My doctor called me right away to let me know that my results were normal, which means it is very unlikely (not impossible, but unlikely) that Baby Girl has Down Syndrome or either of the terrifying trisome chromosome disorders. The genetic counselor called a short time later to confirm the results and answer any questions I had.

I can’t adequately explain what a huge relief this is after all of the scary information I was given at the doctor’s appointment earlier in the day. For the several hours between what I had thought would be a run of the mill prenatal appointment and the results of that blood work, I was already grieving for the loss of our Baby Girl. (Exactly six years to the day I was  experiencing all over again what feels like “The Worst Thing”.)  Thankfully, the results of the blood test means all of that fear and panic was largely unnecessary – though very, very real while it was happening.

And now the waiting continues. I’m so relieved to virtually cross the chromosome disorder worry off my list, but the fact remains we still don’t know what’s going on with Baby Girl’s heart. There is a very real likelihood that we’re facing a complex congenital heart defect, but we won’t know until that appointment on February 5.

For now all we can do is hope and pray that everything will turn out fine. In the meantime, I’ll be grateful for every little kick I feel and do my best to make our Baby Girl as strong as she can be.

(Wow. That was hard to write. I think I’m done now for a while.)