>I’m weird. I remember things. Lots of things. When it comes to remembering events and dates, I’m your girl.
In January, I posted that it was the 1-year anniversary of getting my first and only positive pregnancy test in 14 cycles. While that may be no big deal to some, for anyone who has had to “try” very long, that’s a huge deal.
One year and one day ago, on April 17, 2007, I got the call.
The call that started with, “Your blood work didn’t come back right.”
Back then, I flowered over things and probably sugar-coated things for both the sake of others and myself. While I did go over the major things the doctors were telling us, I left so much out. So. Much. I think that now we are on this side of it, maybe I can open up a little more about what we were really going through.
It was a Tuesday morning. The phone rang at my office. I answered and the person on the other end of the line asked for me. “This is she,” I responded. I knew the voice. It was Kim, my doctor’s nurse, and I had been expecting her call. I had been expecting her to call and say, “We got your blood work back and everything is ok.” Instead, I heard:
“Hi, Aimee. This is Kim. Dr. S. wants to talk with you about your blood work.”
Immediately, all together and all at once, I felt my cheeks flush, my stomach begin to churn, nausea begin and a lump swelled in my throat. Tears began filling my eyes while I waited for my call to be transferred and my doctor pick up. I knew it was bad. He never spoke with patients about test results unless the results were bad.
While I was waiting, a co-worker came out to my desk, saw me trying to keep it together and asked, “What’s wrong?” I think I freaked her out because she got the other admins and I think I whispered “Just a minute” or something along those lines… it’s all pretty fuzzy because my mind was racing a million miles a second.
“Aimee? This is Dr. S. Your blood work came back and your AFP levels were elevated.”
“Ok.” For the remainder of our conversation, I tried to limit my responses to “Uh-hu” or “Ok” because I was afraid that if I had to speak actual words, I would break down and be a puddle of emotions. The tests were what is normally done during pregnancy, called a “Triple Screen” that tests for things such as Downs Syndrome, neural tube defects (such as Spina Bifida, Gastroschisis, etc.) and so on.
“Elevated AFP levels can indicate a neural tube defect. I want you to come in tomorrow for an ultrasound so we can see what’s going on.”
“This doesn’t necessarily mean that something is wrong, but it’s enough to cause concern, so we want to do the ultrasound to take a look at the baby. Can you be here tomorrow?”
“All right. I’m going to give you back to Kim and she’ll schedule you to come in.”
“Ok. Thanks, Dr. S.”
Once the ultrasound was scheduled, I put the phone on the hook and finally blinked, releasing tears that had been held back for as long as I could hold them, because I knew if I let one go, they would all come, en force, unstoppable.
By this time, I think almost everyone in the office is standing there, staring at me, waiting for explanation. I tried to tell them, while at the same time, absorb, what was going on, its enormity and what it all meant. I immediately called my husband and the sound he made was that of someone who has had the wind knocked completely out of them.
We were stunned. Breathless. Overwhelmed.
I immediately thought of my friend, Ashley, from high school. Ashley had spina bifida. She was one heck of a fighter who had endured several back surgeries. By knowing her, I knew what it meant if my baby had spina bifida. She was all I could think about for the next 24 hours.
On Wednesday, April 18th, I went to my doctor’s office for the ultrasound (u/s). I couldn’t believe how much had changed in the four years since I was pregnant with my oldest. The practice had purchased a new ultrasound machine and there was now a flat screen monitor that allowed better viewing by the parents-to-be.
The u/s tech was quiet and all business. She kept checking around, but it didn’t take as long as I thought. She left the room.
“This isn’t a good sign,” I told Paul.
“What do you mean?” he asked.
“I think she went to go get the doctor. If she did, that’s a bad sign.”
“Ah, I bet she just had to go to the bathroom or something.”
The tech came back with Dr. D., my doctor’s partner in the practice and the person who delivered my first baby. My heart sank and tears welled in my eyes.
Dr. D. took the ultrasound probe and began looking around. Then she started explaining things. My heart sank when I saw what they had been looking at. You could clearly see something going on in there. I’ve never been good at reading u/s images, but it was clear that something was going on that shouldn’t be.
She explained that she thought it was a gastroschisis. It could be an omphalocele, that they would look at the images and call me with their final diagnosis. But, she said, trying to assure us that everything was ok, this is manageable. A gastroschisis is pretty much the easiest thing to deal with, she said. If you’re going to have a defect or problem, that’s the one to have, she said. Omphaloceles tend to be associated with chromosomal abnormalities, but she really didn’t think it was that… she was pretty sure it was a gastroschisis.
I drew a deep, long breath.
“Ok,” I said, “This is manageable.”
“Yes! It is. This is very manageable.” She chirped.
While I know she was trying to be optimistic and helpful, it still hurt. “Manageable” wasn’t what I had prayed and asked God for. “Healthy” is what I asked of Him. At this point, I began crying but she was really wonderful about it. A lot of “It’s ok“‘s and a few offerings of tissues.
We asked if they could yet tell if our baby was a boy or girl.
“We’d like some good news,” Hubby said. I’ll never forget how sad his voice was. It really didn’t matter if our baby was a boy or girl, we just wanted to know, to celebrate. The tech said, “It looks like a girl.” We asked if there was any way she was wrong and she looked around some more. This was definitely a girl.
We left the doctor’s office, still overwhelmed and wondering what all this meant for our baby, our family, us.
We agreed to not tell anyone about the baby being a girl just yet.
On Thursday, Dr. S. called me again. He said that he didn’t feel comfortable making a diagnosis of omphalocele or gastroschisis based on the images they had taken. He wanted to refer me to a Maternal-Fetal specialist who was wonderful, very good, very knowledgeable.
About a week later, we saw Dr. C. He looked and within a few minutes said definitely and unquestionably, it was an omphalocele. And that we were going to do an amniocentesis.
“When?” I asked.
“Right now,” he responded.
“I didn’t plan on having an amniocentesis today. Are you sure we have to do it today? What about the risks of miscarriage?”
“You’re not getting it. You have to have this done. Today.”
I completely freaked out inside. Long had I heard how having an amniocentesis was very risky, how high your chances of having a miscarriage are following an amnio… lots of things like that.
I had watched “Babies: Special Delivery” (a show about high risk pregnancies and births) and countless other shows that showed an amnio being performed before. I knew what to expect and was scared, to put it very lightly.
I laid flat on my back. The doctor and u/s tech started scrubbing my growing belly with a clear cleanser and then iodine. All the time, I’m taking huge, deep breaths. I always do that when I’m really nervous or upset. Usually, it works because it helps slow down my pulse and, well, it’s just my coping method. All people are different.
Before he started, he told me that I would have to take shallow breaths. What did I do? Hold my breath. Stupid. I was too afraid that any breath I drew wouldn’t be shallow and that would be trouble.
“Wanna watch?” he asked as he began.
“No, I’m a chicken. I’d watch it on other people, but not on myself.”
So it began. It hurt, but just a bit. I think it probably wouldn’t have hurt as much as it did had I relaxed. I cramped. That was scary, but he said it’s to be expected. I laid there for a minute, but then the doctor wanted me to sit up. He thought I was going to pass out.
Dr.: “Are you ok?”
“It hurts a little.”
“You know, you’re supposed to milk it a little. That’s worth at least dinner at Logan’s tonight.”
At this point, Hubby chimed in, “Waita sec. She had Olive Garden at lunch today.” [The office does lunch out for employee birthdays and we celebrated one that day.]
Dr.: “You weren’t the one taking that needle, buddy.” [The moment I was convinced this was the perfect perinatologist for me.]
I went home and my husband was wonderful about making me rest (not that he had to make me! All I wanted to do was curl up on the couch or in bed. I felt awful.)
One of my dearest friends, a friend since we were in junior high together and who is now a doctor, called that evening to see how it went. Can I just say that Dr. K. H. is pretty much the most amazing woman and best friend ever? She reassured me that, today, the risk of miscarriage after an amnio is hardly anything and that the data out there regarding that risk is very old, outdated and is based on methods used 20 years ago. Today, amnios are much safer, she said. Whew! A huge weight was lifted off my shoulders. Then, she made me promise and swear to her that I would not get online and research anything relating to this or to amnios. I thought she was pretty much going overboard, but she’s one of my best friends, so, sure, no research. I didn’t feel like it, anyway.
My Aunt M. called and she gave me a lot of the same info regarding today’s amnios vs. the Amnio of Years Gone By. I also want to say that through this, Aunt M. has been INCREDIBLE. She’s just wonderful and I have trusted her and relied on her the same way I have our teams of doctors (both mine and Abbie’s).
The day after the amnio, my regular doctor, Dr. S. called to ask me how I was feeling and if I had any questions. With each call, with each display of compassion, I just grew to love him as part of our family. Though I know it wasn’t quite that kind of bond, I so appreciated that he personally called to check on me. I have tremendous respect for him and a feeling of appreciation that runs deeper than typical of a patient for a doctor. It wouldn’t be the last time he would check in on me like that.
The initial results were due on the following Monday. The initial report covered whether or not the baby had a trisomy 13, trisomy 18 or Down’s Syndrome. I hadn’t heard anything by Monday afternoon, so I called the office and was told that everything came back ok. And that our baby is a girl (they check the X and Y chromosomes, too). The ultrasound was confirmed, and we felt that at this point, we could tell people that the baby was a girl.
After getting the initial results back, I finally Googled the terms trisomy 13 and trisomy 18. I felt guilty, horribly guilty, for being relieved that our baby didn’t have either of these. A trisomy is when a baby has three, instead of two, of a chromosome. Babies who have trisomy 13 or trisomy 18 never live. Now I knew why K. had made me promise her to not do research. How thankful I was that I didn’t have to live 3 days in a mental hell, wondering if my baby would live or die. It was incredibly difficult to read their stories, see how they endured what they had. I may share a story or two at some point.
About a week later, we got the complete report and everything else came back ok, meaning, no chromosomal abnormalities, no other organs are affected besides the intestines and there are other problems. Well, that’s what we thought, anyway. I wouldn’t learn until a couple of months later that Beckwith–Wiedemann Syndrome, a chromosomal disorder, is not detected by an amnio. For a brief while, I believed that the “only” thing going on with my baby was her intestines being outside her body.
In June, I would learn so much more.