I’ve been pretty tight-lipped about what’s been going on with baby girl Pickles lately, but I’m ready to dive in and share what’s been going on. Long story short: everything is fine with both of us, it just took several stressful weeks, lots of phone calls, many unanswered questions, and two trips to an Italian doctor to find that everything is a-okay.
The reason for being so hush-hush was purely selfish and basically to keep me sane; I didn’t even tell a lot of people in real life. I know people would’ve had their best interest at heart, but I didn’t want to hear unsolicited advice or opinions.
This is a pretty long tale (and only part one), but since I’ve shared whats going on in my life for the past seven years on here, I wanted to include it. There are no pictures, and like I said, it’s pretty long, but here’s what happened:
Wednesday, October 24. Around 4:30 pm
Casey was visiting me at the time and we just settled in to have a Matt Bomer White Collar marathon when my phone rang. It was a blocked number, which means it was either my husband calling or someone from base. I quickly looked at the time, did the math, and realized my husband was at work, so either something was wrong or it was someone calling from base. I answered the phone and it was my doctor on the other line. Not a nurse practitioner, but the actual doctor. Nerves started to set in.
She started telling me that the results from my quad screen marker test came back. Apparently, one of my hormones, AFP (alpha feta protein) was elevated and that elevation could mean an increased risk in a spinal defect, such as Spina Bifeda or another type of neural tube defect. Spinal defect? I stopped breathing. Then she went on to say that there was another concern: the anatomy scan I had the week before showed that the baby had a cyst (choroid plexus cyst) in her brain. My baby has a cyst in her little brain. Breathe, Jessica. Breathe.
Then my doctor started to reassure me, saying that the quad screen usually results in a false positive and the cyst almost always disappears by the time the baby is born. She also said that on the anatomy scan she didn’t see anything alarming around the spine. However, since there were two questionable things going on, she wanted me to see a high-risk (Italian) doctor in a town about an hour away. Possible spinal defect. Cyst in her brain. High-risk doctor. Breathe. Just. Breathe.
She was very patient and when I asked her if she could email me all the technical terms so I could tell my husband. She said she couldn’t email it, but could call back and tell my husband when he gets home. And that’s where I lost it. That’s where it all started to set in. “My husband is deployed,” I told her through a gigantic lump in my throat. Still extremely patient, she waited while I found paper and a pen and then proceeded to tell me all the technical terms.
Then she told me all the other info, mostly that Tricare would be calling me—by Monday at the latest—with an appointment day and time. She asked if I had any questions, but at that point my head was spinning and not thinking about any coherent questions to ask. Before she hung up she reassured me again that it was going to be okay.
Possible spinal defect. Cyst in her brain. High-risk doctor. My husband is deployed. No family around. I live in a freaking different country. I miss America. Dear God, please let everything be okay. Just. Keep. Breathing.
After I hung up, Casey could obviously tell something was going on. I can’t remember if I told her what was happening or if I just showed her all the notes I just jotted down, but she gave me a hug and gave me space to do what I needed to do. My husband was at work, so I immediately sent him an email asking him to call me as soon as possible. Without hesitating, I texted my mom and asked her to call me, which she did about one minute later.
That’s where I lost it. I had the ugly cry over the phone while I tried explaining what the doctor just told me. What should’ve taken only a few seconds to explain took a good couple minutes. I don’t remember most of our conversation, but I do remember she said she’ll come out here to be with me. Ah, momentary relief. I refused her offer, of course, but she insisted and wanted me to let her know as soon as I found out when my appointment would be. Cue more ugly tears.
My husband called a few hours later while we were getting pizza next door—it turns out it was his day off and he was sleeping in—so I left Casey to fend for herself and ran back home to fill him in. I gave him all the technical terms and he immediately started using Dr. Google to find out more. Telling him was such a relief.
By the time Casey came back with our pizza I was just about finished talking to my husband. We came up with a list of questions to ask my doctor and he told me everything would be okay. I prayed it would.
This was the first time in awhile that the reality of where I was became apparent. I’m pregnant with my first child, in a foreign country, my husband is deployed, my family is literally thousands of miles away, and now I had possible complications. It was a lot to handle. Sleep surprisingly came easy that night, thank goodness.
Thursday, October 25.
That Thursday morning I called and left a message for my doctor to get my questions answered. When we talked the day before my world became hazy and I couldn’t think about anything coherent, so asking questions were the last thing on my mind. That morning I had a whole list of questions for her. When I called, though, the nurse said she wasn’t available and had 72 hours call me back. That seemed a little excessive to me, especially with the weekend coming up and since I had a laundry list of questions unanswered, I said okay and hung up.
I should mention here that I didn’t—and still haven’t—looked up a single thing on Dr. Google that my doctor mentioned. Me, the girl who’s online 25 hours a day didn’t look anything up. I’m still shocked at my willpower to stay away, but I think it helped me SO much in the long-run from freaking out. I didn’t want to research or find forums and read things that could happen—good or bad. My husband and mom, however, didn’t take that route and looked up everything.
The people I told kept repeating that the things going on (the hormone, especially) produced a lot of false positives and that the cyst almost always disappears. While hearing that was comforting to know, I couldn’t help but think that out of alllll of those false positives, someone’s baby has to actually have a positive, and someone’s baby’s cyst may not go away. While it’s fantastic to think positive about everything, I just didn’t want to have to hear that over and over and over again, so not talking or researching everything just helped keep me sane. I’m beyond thankful that my friends and family respected my request to not talk about it; I received messages of concern and that they were thinking and praying for us, but that’s it, which was a huge weight off my shoulders.
Also, having Casey around was such a blessing. She distracted me more than she’ll ever know. We had plans to see more of Italy, so that’s exactly what we did. Instead of staying home, where I would do nothing but run my mind wild thinking about all the possibilities, we went shopping!
Friday, October 26.
I headed to base to talk to Tricare since I didn’t hear from anyone the day before. My doctor said I should hear from someone on Monday, but I figured I’d stop by to check the status, just in case they had info on when my appointment would be—my mom wanted to fly in, so the more time she had to plan, the better. I also, at this point still had NO idea what tests were going to be done since my doctor hadn’t called back.
I went to Tricare and they said that since the referral went through, they were just waiting for it to be authorized, but the authorization could take a (business) week, which means I’d be looking at hearing something by the following Friday. I wasn’t expecting to hear that at all. I thought I’d hear something by Monday and wasn’t sure I could wait a whole other week without answers—that’s a long time when you don’t know ANYTHING about what’s going on with your baby.
Monday, October 29.
I made it through the weekend and was excited because today I would hear from my doctor and get my questions answered, and maybe, hopefully, hear from Tricare. However, by the time the afternoon rolled around and my phone never rang, it was apparent the doctor would not be calling.
I went to the medical clinic that afternoon since it was well over the 72 hours at this point. I had questions we needed answered. I was told that the doctor “had a busy week last week” (um…yeah...so did I) and that she was was already up at labor and delivery, so she wouldn’t be able to talk to me that day. The receptionist did say that my doctor had administration hours the next morning, so I should hear something from her then.
Not satisfied with that answer, I left and went to Tricare. I’ve heard from friends that you need to be your own advocate and bug the heck out of Tricare to make sure your case is actually moving along and not just sitting in a pile somewhere, and since their office is about 10 feet from the OB, I went over to check on the status of the authorization. But there was no change. They were still waiting on the authorization.
We were now on day five with no answers and no appointment. The only thing that gave me relief—besides praying—was feeling Pickles move around. I would literally cry when I felt her wiggle or kick. It was such a comforting feeling.
Tuesday, October 30. (Day six)
I woke up at 7 am, knowing that the clinic opened at 7:30, in case the doctor called me first thing. I mean, she had to at this point since it’s been 100+ hours since I made my original request for a freaking call back, right? Wrong.
I had lunch with some friends in the squadron, and I kept my phone glued to my side in case the doctor or Tricare called. It never made a peep. I told two of my friends—who also happen to be key spouses—what was going on a few days earlier just to keep them in the loop. After lunch they asked me how things were going. They were beyond upset that I didn’t have a single thing to tell them. The fact that I hadn’t heard back from my doctor was very unsettling, and they were extremely mad that I was told Tricare would have an appointment for me the day before, but then was told another date later. They asked if I’d mind if my husband’s squadron got involved.
I was hesitant to involve his squadron, especially because my husband wasn’t even here with me, but also because I really didn’t want to make a huge fuss. At the same time, it’s my baby and I was starting to feel like we were we were being pushed around and ignored. I was advocating for myself, but it wasn’t getting me anywhere. I told them it was okay if they got involved and they said I should hear from the First Shirt or commander later that day.
After lunch ended, around 2 pm, I called my doctor’s office again, but once again had no luck talking talking to my doctor. ALL I wanted at that point was to get my questions answered! I had also given up on hearing from Tricare and figured they’d call me when they were good and ready. Sigh.
I got home that day around 4 pm and within seconds of walking in the door, my phone rang—it was Tricare! The woman on the other line said she tried calling me twice with no answer (LIES! I’ve had my phone glued to my side) and that she heard from my husband’s commander earlier and they had an appointment time and date for me. Holy cow, they work fast! My appointment was set for a week from Thursday on November 8.
The commander called me a little bit later to see if I heard from Tricare. He was so unbelievably supportive and nice. He said that he and the rest of the command at the squadron were here if I needed ANYTHING from them and that he was sorry I kept getting pulled around in different directions. He said that if I didn’t get them involved I could’ve been waiting around another week to hear from them. It’s ridiculous that it took telling someone higher up than me or my husband to get the ball rolling, but I’m thankful thankful they were here looking out for the spouses while our husbands are away.