change of plans.

June 30, 2016

So, in my last post (or maybe the one before?) I wrote about how Lavender and I were going to be in Missouri for three months, with Mr. Mostafa coming in mid-June in order to spend our last three weeks with us before we all returned to Riyadh together on the 10th of July.

Yeah, well…change of plans.

In my last post, I did write all about what’s been going on with my pregnancy, and how difficult it’s been. Well, after I wrote that, it didn’t get any better. In fact, it got worse. And worse.

When I left Riyadh, the pain in my lower back was pretty intense when untreated, but it was completely resolved if I took a few Panadol (Tylenol, for folks in the States–in other words, acetaminophen). At the time, I was still in that admirable but ultimately untenable “no medication at all unless absolutely necessary” mindset that I steadfastly maintained throughout my pregnancy with Lavender, so I despised the idea of actually relying on the acetaminophen.

But once I got to the States, I couldn’t deny that the pain was steadily ramping up, to the point that Tylenol did almost nothing to address it. My mom and I desperately tried to get me an appointment with an OB/GYN in Missouri; we had no clue how difficult this would prove to be. Originally, when everyone involved had planned on a reasonably healthy, uneventful pregnancy, we figured I would go to a couple prenatal checkups with an OB/GYN in the Ozarks, and have a couple ultrasounds done to monitor the baby and the fibroid, as my OB/GYN in Riyadh had recommended when she gave me clearance to travel. No big deal, we thought. And Lavender and I have health insurance that pays at least part of our medical expenses during international travel (more about this a bit later), but how that works is, we pay up front for services rendered, and then we submit a claim to the insurance company in Saudi Arabia, who then reimburses us for the amount they determine appropriate. So, essentially, when I was in the States this time, I was a self-pay patient. (We’re looking into other insurance options in case of emergencies for future summers in the States, but suffice it to say, I won’t be traveling internationally long-term during future pregnancies, if there are any.)

Turns out doctors–or at least, OB/GYNs–in the States are pretty choosy about what patients they will work with. Despite having, you know, grown up in the States, I had never encountered this before. But some doctors wouldn’t see me because they didn’t accept self-pay patients. Others refused to see me because I wasn’t planning on establishing care for the whole pregnancy with them. I even had a referral to an affiliated OB/GYN practice from the MD who was my general practitioner years ago, before I moved to Riyadh; it didn’t help me. One doctor informed me that in order to receive treatment in his office, I would need to pay $900 up front for my initial appointment, and then collaborate with a financial advisor in his office to establish and commit to a payment plan to cover the entirety of the pregnancy and birth, even though I made it clear that I wasn’t planning to give birth in the States at all.

It was a nightmare. And eventually it got to be too much.

As I mentioned in my last post, ten days after my arrival in Missouri, I ended up in the emergency room due to the pain. I didn’t have any other choice. Although I had no bleeding or anything else that indicated I might be having a miscarriage, I wasn’t sure how it was possible for me to be in so very much pain and not be in labor. I was terrified for the safety of my baby. So into the emergency room I went, clutching my medical file from my hospital in Riyadh. The doctor who saw me did a quick bedside ultrasound and showed me that my little one was safe. He guessed that the cause of the pain was the fibroid degenerating and predicted that it would go away on its own. Then he sent me on my way. (With a cool $1,000 bill to follow a few weeks later.)

But the pain didn’t go away. Again, it just got worse. I could eat less and less. I could sleep less and less. I visited a prenatal chiropractor. I got prenatal massages. My mom became an essential oils guru overnight, slathering tingly, herbally scented concoctions all over my lower back and diffusing relaxing oils into the air around me. I researched home remedies to reduce inflammation–I ate whole cloves of garlic, you guys. Nothing helped. My brother’s wife told me point blank that I looked horrible, and that maybe what I needed was to be sipping on a nice cup of blood, like pregnant Bella in the Twilight books/movies (choose your poison). “You sure that’s not a vampire baby you’ve got there?” she joked. (The garlic cloves probably weren’t appreciated if that were the case.)

Eventually, my mom was able to find a local doctor who would agree to see me even though I was self-pay and wasn’t planning on staying in the States for my whole pregnancy–he was an MD who happened to also provide prenatal care, not an actual OB/GYN, but I didn’t care. I was just happy to have a doctor to talk to.

He was nice, and he was understanding of my situation (i.e., he wasn’t going to refuse me care because I was self-pay or because I was a temporary patient), and he was supportive. But he was also clearly mostly accustomed to dealing with normal, healthy pregnancies. He wanted to help me, but as I described my symptoms, I think he was largely stumped…or chalked them up to just a particularly rough pregnancy, difficult but nothing to be alarmed about. In an attempt to get the pain under control, the doctor prescribed Flexeril (a muscle relaxer) and Tramadol (an opioid). Neither provided any sort of relief (truth be told, I was kinda grateful that the Tramadol was useless, as I wasn’t thrilled about the idea of taking an opioid at all, let alone throughout my pregnancy). Nothing. Helped. I was despondent as I rocked back and forth on all fours throughout the night, just trying to manage the pain. I didn’t understand why this was happening. My parents were just as scared. So was Saleh.

Finally, one night, nearly two months into my visit to the States, I was on a tearful middle-of-the-night FaceTime call with Saleh back in Riyadh when he implored me, “Honey, please just go to the emergency room. Go to the hospital. This isn’t normal. Tell them to figure out what the hell is going on. We have savings. We can pay. And the insurance will pay part of it.” But over the course of this American medical melee, we had learned that in international applications, our Saudi health insurance would only reimburse us for the cost of the equivalent procedure in an in-network Saudi hospital. So let’s say an American hospital gives me an asthma inhaler and charges me $50 for it; if I could get the same inhaler in a Saudi hospital for the equivalent of $4, then the insurance company would only reimburse us that $4. And that example is basically the cost spread for everything in comparison between American healthcare costs and Saudi healthcare costs. Nearly everything healthcare-related is obscenely, absurdly, unethically expensive in America. That’s just the truth.

“No, I can’t,” I said. “If I go into the emergency room and they admit me, even with our insurance, not only will our savings be wiped out within a few days, but I could end up leaving the hospital in debt equal to ten times what our savings was.”

“Fine, then I’m coming to get you,” he said. And he did. He arrived twenty days earlier than planned, and he switched our flights so that we would all go back to Riyadh a few days later, about a month earlier than our originally scheduled departure.

For the first few days after Saleh arrived, I felt better. One thing that I love about him–and a thing that makes him such a good match for me–is that when I’m scared and/or panicked, he doesn’t panic with me. He knows one of us has to stay steady. He swoops in and takes charge in a way that makes me feel like somehow, everything is going to be okay.

He promptly took over full Lavender duty so that I could sleep whenever my body felt like it could. Since the only place I could manage to sleep was sitting up in my trusty La-Z-Boy recliner (laying flat in a bed, whether on my side or on my back, was impossible), he dismantled Lavender’s little twin bed, set the pieces aside, and moved my recliner into her bedroom. “Now, whenever you need to sleep, you just come in here and close the door and put on this eye mask and sleep in the dark and quiet,” he ordered. He rubbed my back and my feet to help me relax. He held me when I cried and he told me that I was the best mother, that I was strong, that he was proud of me. Somehow, he kept me going.

And in a few days, we were back in Riyadh. By the time we left, the slight bump in my condition, which I’ll call the Saleh Effect, had worn off, and I was back to feeling just as bad as before. The journey was long and brutal and I couldn’t have done it without him (as I had when flying into the States), but we made it. And on the following morning, we went straight to my doctor, who admitted me to the hospital immediately and began a full course of treatment to get the pain managed and to get me back to baseline healthy after a couple months of steady deterioration in the States.

The medications came fast and furious, with me anxiously inquiring as to the level of safety for the baby and receiving assurances that they would not do anything to hurt the baby. There were painkillers, fluids, vitamin shots, antibiotics, blood transfusions, anti-nausea meds.

Within a few days, I absolutely felt better–I could eat and sleep more than I had in months. The dark circles under my eyes began to fade. I felt stronger. But the pain was merely masked, not treated. My doctors had hoped that the pain was the result of the fibroid slowly degenerating, just as the emergency room doctor in the States had suggested. But by the time I completed two weeks in the hospital with no change in the level of pain when it was undermedicated, it became very clear that there had to be other factors at play.

The thing that scares me deeply about this pain is that when totally unmedicated, it feels like continuous, uncontracting labor. It radiates from my lower back into the front of my pelvis. I mean, I gave birth to Lavender without a lick of pain medication–and I say that not to prove that I’m somehow tougher (obviously, I’m not tough at all or I’d be handling all of this much better than I am) or a better mother than a woman who gave birth any other way, but just to point out that I have that pain experience to compare this pain experience to. It’s not like, transition, a contraction away from pushing labor pain, but it’s definitely similar to the panic-inducing pain that prompts a mom who has been laboring at home for as long as possible to insist that it’s hospital time, because even though she knows it’s not quite time for the baby to actually come out, the fear that she’s going to end up having the baby alone on the bathroom floor (yes, I know some moms are that hardcore, and no, I’m not one of them) is suddenly very real. And when effectively medicated, it feels like pain that makes a mom think, “Holy shit, this is it. I’m in labor. LABOR.” It never goes away. It doesn’t come and go, like contractions do. It’s always there. And the stress of being terrified that it’s going to kickstart actual labor and end up causing me to end up giving birth to my child very prematurely is continuous. Not to mention the omnipresent fear that I’m somehow causing irreversible harm to my baby as a result of the medication I’m taking, or the inadequate nutrition I was able to keep down for the last few months, or the warm-verging-on-hot baths that provided just enough relief that I could grab 45 minutes or an hour of sleep, or the overall life-draining lack of sleep, or the heating pads that were a constant fixture on my lower back until they started leaving alarming, potentially permanent burn marks, a lovely little side effect colloquially known as “toasted skin syndrome,” and suddenly I was horrified that I might be literally cooking my child (not to mention myself).

And I’ve had to struggle not to spiral into tear-soaked panic attacks while entertaining worst case scenarios in my brain. Sometimes I fail miserably at this. But Mr. Mostafa is by my side, doing his best to help me through it all. I am still in the hospital. We are still desperately searching for answers, while seeking to ensure that the little one inside me stays safe.

Please keep our baby, me, and my family in your prayers. Or your positive, healthy thoughts. Any and all appeals to divinity and/or the universe on our behalf are very much appreciated. A very sweet friend of mine here in Riyadh let me know that she had requested that her sister, who is a nun, add me to “prayer trains.” My friend was amused when her sister informed her that the phrase was “prayer chains,” not “trains.” My response? “Trains, chains, or automobiles…as long as the prayers go, I don’t care how they travel!” <3

And I’ll update when I have more to share. There are other details and stories I plan to write about in relation to this experience, but this is all I can give for now.

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  • http://www.MyBeautifulAdventures.com/ Andi Perullo de Ledesma

    You will definitely be in my thoughts! I am so sorry that you’re having to go through this. Have you had an MRI on your spine? It sounds almost like a pinched nerve at L5?

  • traveler

    I hope insha Allah you feel better!! Wow it sounds lot a lot of pain. May Allah give you an easy delivery and a healthy baby. Which hospital are you going to? I had one of kids here at Sulaiman al Habib and it was an awful experience in which they committed a medical error. Needless to say, I don’t want to go there again. I heard good things about Della. Get lots of rest!

  • Becky Patouhas

    I noticed your Facebook page was gone :( I’m thinking of you and praying for you guys. I hope you’re well.

  • DonnaRoberts

    Sadly, Nicole passed away a few days ago. Her 3 month old daughter is fine as is 3 year old Lavender. Nicole had a malignant tumor on her spine that did not respond to treatment.

    • daisy407

      I am so sorry to read this. I have been reading her blog for a long time and kept checking to see if there were any updates since she posted about Juliet’s birth. I was shocked and saddened to read that she had passed away. I find myself crying for someone who I’ve never met. But, that just shows how amazing she was. She managed to touch people’s lives whom she has never met in person. Her blog was one I looked forward to reading and one that I will deeply miss. My thoughts and prayers are with those whom she has left behind.

      • DonnaRoberts

        I feel the same. I’ve been very saddened by her death even though I only knew her via the internet. That doesn’t make the relationship less real or the loss easier.

        • daisy407

          I think, in a way, it is harder in the sense that reading her blog gave readers a more intimate look into what made her HER. It was a window into her soul and I felt privileged that she allowed us all glimpses into her life. I definitely learned that some of my own conclusions on life in KSA and of the Muslim religion were completely wrong and I appreciated her sharing her personal experiences. I find myself having become so much more open minded than before and I thank her for that. I am sad that her blog ends here and that we didn’t get a chance to say goodbye or tell her how much she meant to us anonymous readers. I hope she knew the impact she had on people, not just those she met, but many many people she never met. I hope to meet her in the next life.

      • traveler

        Allah yarhamha. I am shocked. I loved her blog and her funny kind personality came through. May Allah grant her jannat al firadous.

  • Mr. Mostafa

    My sweetheart would have been so happy to see all the messages I have received from around the world. She touched a lot of lives.Thank you.

    • JacquesKnowles

      Saleh I’m so sorry hearing about dear Nicole.May she RIP. I’m at a complete loss for words I honestly just found out that dear Nicole passed away. Since the past months I been constantly check up here & on IG hoping to see an update from her & now out of the blue I hear she passed away I’m in complete disbelief.So many questions come up as to did Nicole know about her condition previously or was it all of a sudden after the birth of Juliet. I hope you stay strong yourself & for both Lavender & Juliet going through all this which i can’t pretend to know what it feels like. I will be keeping all of you in my prayers. :'(

  • Angela Mrazek

    Inna Lil Laahi wa Inna ilayhi rajioon
    Indeed we belong to Allah and to Him we will return
    I’m an Australian revert to Islam and I found this blog just after I converted. I really benefited a lot reading blogs from other sisters and their experiences in Islam. I really started reading and following when my first daughter was born 2 years ago. It can be really lonely being a revert so the internet is a great resource.
    SubhanAllah I never commented on this blog but when I found out Nicole had passed away it was so quiet in my house like my sister had passed away. It’s hard to explain but this love Allah puts in our hearts for Muslims even though we never met is something I only experienced as a Muslim.
    Please for Nicole’s family keep this website accessible and may it be an ongoing charity for her of beneficial knowledge.
    May Allah forgive Nicole and all of us and reunite her with our family in the afterlife.
    May Allah grow up her two little girls to be righteous believers and may He accept their Duua for her.