Not Quite as Planned

* A quick apology- I’m in pain and tired so I’m not proofreading this, just throwing it out there as fast as I can type it. Sorry for any mistakes.

The past couple of days did not go at all like I had planned them to go in my head. Yesterday was my 10 week check up. I was worried about the baby as usual, wondering if there would be a heartbeat on the ultrasound. The nurse decided she would try to use the doppler to find the heartbeat instead of the ultrasound, even though it’s hard to find one that way at only 10 weeks. Well, she searched and searched and could not find a heartbeat. I really tried not to freak out, but was right on the verge. She acted like it wasn’t a big deal and said they would check with an ultrasound after I met with the MFM (who was supposedly coming in just a couple of minutes.) I really wish she would have checked my chart and seen that I had had a stillbirth and that this was a VERY big deal to me. The appointment with the MFM was frustrating and long, but I could tell that she was doing her best. She realized that they had not actually sent the orders for my plasmapheresis treatments that are supposed to start at 8 am on Monday. After about 3 hours of waiting, she finally told me she got it all figured out and the treatments were approved and scheduled. Even though the wait was long and the fear was right under the surface, I was overwhelmed by an incredible peace. I truly felt like the baby was ok. Sure enough, there (s)he was healthy and kicking on the ultrasound with a heartbeat of 168. Perfect! And so cute too. I love this baby so much.

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So, even though it was a long and somewhat scary appointment, everything ended well because the baby looked healthy. I cried almost the whole hour home, thanking God for this baby’s life and begging Him to let me raise this child on earth.

This morning, I had my permacath placement scheduled for 8 am and thought I would definitely be home by 1:00 or 2:00. Instead, we had a very frustrating turn of events and didn’t get home until 5:30, emotionally and physically exhausted. For some reason I had to wait hours for the procedure to start. Right before I went into the operating room, I got a call from one of the MFMs saying that they just checked with my insurance company to get preauthorization for the plasmapheresis on Monday and the insurance company said it would NOT be covered. What!? I was shocked since I just called and asked them a couple weeks ago and they told me it would be covered. I also thought that the doctors had surely not waited until the day before the procedure to check for preauthorization, but they had. After hours of phone calls before and after my (very painful and quite traumatic) procedure, we basically learned that when I called the insurance company to make sure the treatments were covered, the treatment codes given to me by the hospital were the wrong ones. The insurance is now saying they cannot guarantee that any treatments will be covered. The doctors estimate that these treatments alone will equal at least $100,000. We cannot afford them, but we cannot risk our baby’s life because of money either. How much money is my child’s life worth? How much money would I pay and how many years would I be in debt to have Lucy back here with me ALIVE? There is no price too high. This is also a very time sensitive decision. The baby can start being affected by the antibodies at 11 weeks. I will be 11 weeks in 2 days. The treatments HAVE to start next week in order to give our baby a chance. We will have to fight the insurance company on this, so please pray that they do end up covering the treatments. We have decided to go ahead with the treatments this Monday and keep challenging the insurance if they say it’s not covered.

Even though these past couple of days have been unexpectedly long and stressful, we are so thankful that the baby is healthy and doing well at this point. That was our most urgent prayer request and God answered it with a loud YES. Our second most important request was for the permacath placement to go smoothly with no complications. Besides a lack of pain medication (that they decided was possibly too risky for the baby at the last minute) and some very intense pain during the procedure, it went well and is in place. It’s all bandaged up so you can’t see much of it, but it’s stitched into my neck/chest and ready for treatment on Monday.

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Also, the doctors and nurses in the heart and vascular center today were so incredibly kind and helpful. One nurse saw how distressed I was during the surgery, so she stopped what she was doing and came right next to me and held my hand. “Honey, you just squeeze my hand as hard as you want. You are doing this for that baby girl, just think of your baby. It’s all for her.” She knew I was hoping for a girl and was she was so loving and encouraging. And that poor lady, I squeezed her hand at least as hard as I squeezed Josh’s when I was in labor with my babies. She never complained. She was a bright spot of joy in my dreary day, as were the other doctors and nurses who took care of me. My dreary day was actually full of blessings that I am thankful for. Thank you all for praying for us and checking in on us. I will try to update after the first plasmapheresis treatment on Monday.

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6 thoughts on “Not Quite as Planned

  1. Despite the emotional and physical distress you have endured, I am so relieved to read that baby is doing well so far. Best wishes to you as you go through this trying time. I look forward to updates and following your journey.

  2. So thankful that baby is ok. Beyond thankful for the compassionate and loving nurse. So sorry that you are in pain. Praying that it subsides quickly. Also sorry and frustrated for you regarding the insurance company. Praying that they will cover everything. If they don’t, praying that God will provide every single penny. Still praying that you will get to love and raise this baby here on earth! The lengths you are willing to go to to get your family is an inspiration!

  3. That’s crazy that the insurance company won’t cover plasma-pheresis, and even more ridiculous that it would cost $100,000 for the procedure, They can use your plasma they remove for other patients which they can charge their insurance companies for & make up for their cost.
    Keep fighting the insurance, they have no right to decide the best options for your baby..

    Love & prayers..
    God is Great…

  4. Unbelievable how cavalier medical pros can be! And unprepared! It’s so not your fault that the hospital gave you the wrong codes. I’m hope everything gets straightened out.

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