Dr. Northrop also wanted to do a hysteroscopy to look at my uterus, but we had to wait at least 3 normal cycles to pass before we could do the surgery. The surgery was scheduled for November, and I was told that my uterus was "beautiful", haha. So, that didn't give me any additional information as to why we lost two precious babies.
We were told that we could try for another baby, so that's what we did for the next few months. By May, we hadn't been able to get pregnant, so I scheduled an appointment with the same fertility clinic that helped us in the one cycle it took to get Brooke. (Previous cycles had been done in Florida, but were unsuccessful.) The doctor I had worked with (Christine Mansfield) was no longer with the practice, so I scheduled an appointment with Dr. Anna Nackley.
Kevin and I went to the initial consultation together, and it was very informative. I brought a lot of information from the past few years, and basically she said that normally with these "unexplained miscarriages" they see aneuploidies (abnormal number of chromosomes), but again, this wasn't the case with our loses. Pathology reports for both our baby girl and boy came back normal. Again, no answers. Dr. Nackley wanted to redo some of the fertility tests I had done 7 years ago since it had been a long time and we wanted to see what we were really working with. My AMH (ovarian reserve) had dropped from 2.4 to 0.99, but I am obviously older so that number naturally goes down. It was explained to me that my AMH number now placed me in the 25th percentile for my age, which isn't great odds.
The resident with Dr. Nackley also brought up a virus test that can be done to test for HHV-6. It is a virus that is gaining attention as a potential risk factor for infertility. I guess it can't be detected through a blood test, so an endometrial biopsy is done followed by careful examination of the tissue. They gave me a phone number to call to get pricing information, and the test was going to be almost $600. Everything fertility related (or medical related for that matter) is SO expensive!! The Coppe Laboratories representative was able to answer a lot of questions for me, and I guess their lab is the only US lab using the "gold standard immunohistochemistry (IHC) test that can accurately determine whether you have active HHV-6". If they do detect it, your doctor can manage your fertility treatments to suppress the virus, thus increasing your likelihood of a successful pregnancy. In a pamphlet they sent me, it further explained: "In the case of repeat failure to implant and multiple miscarriages, it appears that HHV-6 disrupts the uterine environment, making it inhospitable for implantation and fetal development." The whole study is still in the experimental stages, but we figured it was worth a shot because it seemed like a possible explanation for what happened with our last two pregnancies.
The day of the virus testing, one of the nurses used tools similar to those used for a Pap smear to get the tissue sample. It was slightly uncomfortable, but not terrible bad. I did have spotting that day, which I was told was perfectly normal. A week or so later, I received a phone call that the tissue sample came back negative for the HHV-6 virus. We also scheduled an HSG that checks for flow in the fallopian tubes. They basically place an iodine-based dye through the cervix and inject it into the body while taking x-rays to evaluate the shape of the uterus and whether the fallopian tubes are blocked. This test was perfectly normal. I was grateful that I didn't have the HHV-6 virus, and that my tubes were functioning properly, but it wasn't giving us any answers, haha!
So, after months of testing, the only thing of concern was my AMH number. With all these results, Dr. Nackley recommend that we just continue to try on our own. She asked how I felt about that. I was relieved that nothing was wrong, but I also didn't want it to take another year to get pregnant like it had with the last pregnancy, so I asked if we could at least do the Clomid, the sonogram monitoring, and the Ovidrel shots for ovulation. I felt like with a little bit of help, we would be able to get pregnant.
Well, I was wrong in my assumption :/ The first month of being on Clomid was going well, but the follicles weren't progressing as quickly as they thought. I had already gone in to the office on cycle day one, day 10, and then day 14. Since they weren't at peak size yet, I had to go in on day 16 and 18. By day 18, they decided to trigger me with the Ovidrel shot and then we were to try on our own. It was such an emotional month, especially since the office doesn't allow children and I was asking friends to watch Colby over and over. Rachel and Joanna were the friends helping me out, and although I know they were happy to help, it was hard to keep asking. I like to just handle things on my own, but when the office has a policy like that, what can you do?
I was still hopeful that I would get pregnant, so when the pregnancy blood work came back negative, I was crushed. It had been such a long month emotionally and physically, and I felt defeated. Kevin was super supportive, but he didn't completely understand what I was going through. After talking a lot, we decided that we would try again. When my next period started, I headed back in for the baseline sonogram. I was given the clear to start the Clomid, and this cycle went a little more smoothly than the last. At my day 14 sonogram, I had two mature follicles, and I remember driving away thinking, "Maybe I am going to have twins which is why it didn't work the first time! " I felt peace knowing that the Lord had a bigger plan for our family. Immediately following that feeling, I had a distinct impression that if it didn't work again this month, I needed to remember that there was a bigger plan and I needed to be patient. Well, the morning I was supposed to drive up to Girl's Camp, I was going to the office for the pregnancy blood work. We also had a death in our ward that week of a 10 year old boy, so following the blood work, I went straight to the funeral. As I walked out of the funeral, I had the voicemail from Dr. Nackley's office and I went in a classroom to listen. It was some vague message about needing to call them back, so I called and waited for the bad news that again, it was negative.
I was, of course, disappointed, but I had to just drive to camp and continue on with my day since I was driving my counselor Sandee in my car. I shared the news with her and we were able to chat a bit about it, which was helpful. I was able to keep my composure, and then being at Girl's Camp was such a terrific testimony builder. Hearing each ward sing their chosen songs was beautiful, and the lyrics to our song spoke to my soul.
Strong
You are an overcomer
Born with a lion heart
You can pass through the wind and the fire
But it will help you to shine even brighter
Like the jewel you are
There may be disappointments
Sometimes you'll make mistakes
But when it feels like you've lost all your chances,
There you are rising up through the ashes
Come what may
Come what may
You are strong
Strong enough to make it through whatever comes
You'll be amazed what you can do
You're a force you're a fighter
A precious daughter of God
And He made you strong
And He made you strong
You're like a mighty ocean
Trapped in a hurricane
Though the winds may be blowing around you
There is nothing that could ever drown you
Come what may
Come what may
You are strong
Strong enough to make it through whatever comes
You'll be amazed what you can do
You're a force you're a fighter
A precious daughter of God
And He made you strong
He made you strong
I didn't get home from camp until super late, but I felt such peace when Kevin held me tight. I had a good cry, but I felt like I was given the spiritual strength and boost I needed. Well, the next day I was struggling. I just felt empty inside, and although I was trying to keep my faith that we would be able to have another baby, I just felt nothing.
I started my period a few days later, and it was painful and uncomfortable. When I went for the baseline sonogram (yes, we decided to try AGAIN), I had a cyst in one of my ovaries and a pocket of unknown fluid behind my uterus. Dr. Nackley was the one doing the sonogram, and she said that because of the cyst and the fluid, we wouldn't be able to do Clomid that month. I guess the hormones would cause the cyst to grow. We were given clearance to try on our own, but just wouldn't be doing any of the monitoring. I had hope that maybe this is what we needed. A break from the constant appointments and stress of it all. So, we continued to try on our own and track ovulation with an at-home ovulation kit. I detected a surge, so all seemed to be going well. As the end of my cycle approached, I started feeling cramps so I kind of knew that I was not pregnant. I tried to remain positive, but I was also keeping a dose of reality so I wouldn't be as crushed with the results.
I was right, because I started my period a few days later. Again, it was a rough one, but I survived and we decided to do the actual Intrauterine Insemination (IUI) this cycle to hopefully increase the chance of a successful pregnancy. That was a whole other experience, but we made it happen and the day of the IUI, Bev met me at my appointment and took Colby home with her so that I could go home and rest for the remainder of the day. This time, I really felt positive that it was going to work. Everything seemed to be going according to plan...but again, it was a negative pregnancy test. I was just an emotional time bomb. I started doubting whether or not we were meant to grow our family.
Kevin and I had both felt good about it, and of course we have prayed about it throughout the cycles, but neither one of us has received some life-shattering confirmation that what we are doing is going to end in a pregnancy. I don't think we ever will, but I guess until we feel like stopping, we will continue to attempt to grow our family.
I started my period a few days later, after SIX days of cramping before I actually started my cycle. The periods were getting way worse, and I was physically struggling. Day two had me in bed because it hurt to even walk around my house. I was having such severe abdominal cramping that I couldn't function. I barely made it to school to drop Brooke off, and then Colby and I camped out in my bed. I let him watch far too many shows on Netflix, and then when I felt guilty, I had him bring me a huge stack of books for us to read together. I then called my mom because I literally didn't know what to do. She wished she could be here with me, but she did the next best thing and read books to Colby on FaceTime for a solid 45 minutes so that I could just lay still in my bed and try to manage the pain. I had taken some old pain meds Dr. Northrop had given me after one of my miscarriages, but they didn't do much until they'd ben in my system for almost 3 hours. But at least I was able to get out of bed and get myself to the school to pick Brooke up!
The next day, I had a consult with Dr. Nackley about "the next step" as the nurse called it. I was nervous that she was going to tell us it was a lost cause, or that we needed to jump straight to IVF. Then I started wondering if maybe it was a simple thing, like increase the dosage of Clomid to increase the number of mature follicles. As soon as I walked into her office, she started talking about all sorts of clinical things. About how, on paper, everything was perfect for the IUI to be successful. The follicle was the right size, I ovulated on my own, the sperm sample was great, so why was it not working?? She started talking about blastocytes and something else I can't recall at this time. I remember feeling like I was going to burst into tears as she talked. I do remember her wanting to repeat the AMH blood work to see if that number had changed at all. That seemed a little weird since they had just done that test like 4 months prior, but I guess if it was declining, we would have a bigger indicator of the time table we were looking at. If it was declining, she would recommend being more aggressive in our treatment approach. In my mind, that basically meant IVF. I guess there's something called an injection cycle, where you are injecting meds everyday of the cycle, but you run the risk of over-stimulating.
When she asked how I felt about all that, I just began crying. When I was composed enough to speak, I explained that I was a bit of a mess because I had been physically hurting for 8 days. The 6 days of cramping prior to the cycle, and then the previous day that I couldn't get out of bed for hours. When I said all this, she explained that she felt we needed to do a laparoscopy to figure out what was going on. I didn't even know what that was, so I had to ask. It's a surgical procedure where they insert a camera into the abdominal wall to view the organs in that area, including the uterus, tubes, and ovaries. She explained that she would be looking for possible endometriosis or adhesions that would be causing this intense pain. If she found any of that, they would make several other small incisions to insert the tools required to remove any endometrial tissue (fulguration of endometriosis) or adhesions (lysis of adhesions). At the same time, they would also do a chromotubation to flush out my tubes, as well as another hysteroscopy.
It all sounded like a lot, but this was really the only way they could figure out what was going on with me. The recovery for the surgery was 3-5 days, so Dr. Nackley recommended doing it on Thursday or Friday so Kevin could help me over the weekend. I was instructed to call the surgery coordinator to discuss any further questions. It was a good visit, but also overwhelming. Before I left, they redid the AMH, and a few days later they called to let me know that it had gone from 0.99 to 0.71, so "basically the same" is what the nurse told me. I don't think that is the same at all, especially since it had been a 0.9 almost a year ago. So in 4-5 months it had dropped 0.2 which seemed significant when we were trying to conceive.
Kevin and I talked and he was supportive of me doing the surgery, but I just wondered about the cost and if maybe it was all so awful because of these fertility treatments. Maybe if we stopped for a few months, things would improve. I called the next morning, and although it was a covered procedure, after deductible and all that, it was going to be $4,000. That just seemed like a lot, especially since we were spending $1000 each cycle for the monitoring, etc. and that doesn't take into account the money spent on all the other testing. I think Kevin could tell that I was worried about it, so he finally said, "Katie, you don't need to be feeling this way for one week out of every month. That's a quarter of your life!"
He was right, and deep down, I worried that they were going to find something really wrong. Like cancer or something devastating. So, I scheduled the surgery and had about a week and a half to worry about it, haha. I made arrangements with Bev that she would come take care of Colby while Kevin took me to the appointment and stayed with me during the procedure.
I had several friends who have been SO supportive during this whole process, and one friend, Megan, brought over a whole basket of things the night before my surgery. She had this procedure a few years ago, so she knew what I was experiencing and what I WOULD be experiencing. The basket included a beautiful faux fur blanket, a water bottle, snacks, a good book, and a scar lotion for those lovely incisions.
Kevin and I drove to the appointment about 11:30, and I was called back to pre-op about noon. They didn't have Kevin come back with me, which I thought was a little strange, but I didn't ask a lot of questions. The nurse was just starting my IV when the anesthesiologist came in to talk to me. I had given them the strange family history thing about my Grandma dying at the dentist from anesthesia, and he wanted to know more about that. (The day before, my mom had asked if I told them about what drug NOT to use. I had no idea what she was talking about. She was sure we had previously had this conversation, but I was certain we had not, haha. I always knew about my Grandma's story, but never than another family member on that side had a similar paralysis after a gallbladder surgery, and the doctor thought it was possibly related.) Well, Dr. Wood spent a lot of time explaining to me that it was possibly a condition called Malignant Hyperthermia and he asked me several questions about symptoms I might have experienced. I had none of them, but when I added the part about the other family member having paralysis after surgery, he said that it was more likely due to a lack of the enzyme pseudo cholintene rather than an adverse reaction to the drug Succinylcholine.
After she left, the nurse was taking care of the last few things, then brought Kevin back to sit with me. When Dr. Wood saw him from behind the glass door, he came back in and reexplained things to Kevin. I appreciated that he took the time to do that. Then it was time to kiss Kevin goodbye and head back to the room. I entered a room full of equipment and positioned myself on the large table. Maybe it's just me, but it's such an eerie feeling being awake in an operating room. I knew that soon I would be out cold on the table, but at that moment, I answered a few questions and then must have drifted out of consciousness.
Kevin helped me use the restroom and then I was cleared to go. I felt like a total train wreck, and I barely made it to the car. Because it was early evening, the traffic was horrendous and it took us 90 minutes to get home! At least it gave us ample time to talk about all the things! Oh, I didn't even talk about results. Dr. Nackley found stage 4 endometriosis, which was attaching my uterus to my intestines. This was creating that "pocket" of accumulating fluid we had seen two cycles prior. She also found a cyst on my left ovary, which she thinks was contributing to the drop in AMH. She explained to Kevin that although there were only 3 small incisions, she did A LOT of work in there, so I would be sore for several days. She also said that this explains why the Clomid wasn't working. I'm confused about this comment because the Clomid was working to get a mature follicle each cycle, but maybe that meant it wasn't working for the egg to implant due to all the endometriosis? This is something I will talk to her more about during my post-op visit in a week.
I felt validated getting these results because I knew I wasn't a wuss and that something more severe was going on! I don't know how much of a factor the hormones were playing on the growth of the endometriosis...but this might explain symptoms I've had since my first miscarriage in 2017!
When we arrived home, we pulled into the garage and the kids ran out to greet me. Kevin helped me get out of the car, and I was instantly in pain. Then seeing the kids made me more emotional, and I was basically a hot mess. I was trying not to panic, and Kevin helped me through it. I was able to get into the house and I really just wanted to lay down. As Kevin helped me to the bed, with the kids at my side, I attempted to lay down. I had such intense pain that I was literally moaning and began freaking out again. Kevin tried to get me upright again, but the pain at my diaphragm was unbearable, and then it was in both shoulders and I was dying. I knew it was freaking the kids out, but I couldn't get myself under control. Kevin held me, rubbed my back, and tried to remind me to breath and that I was going to be okay.
That it basically the story of the next two days. Kevin at my side, the kids trying to help me, and me suffering in pain. I'm not trying to be dramatic, but I was not expecting this at all. I was taking a narcotic the first two days, but ran out by Sunday morning. Even with the pain meds, I was just so uncomfortable. I slept sitting up or slightly reclining on the couch because laying down hurt so badly. If I sat for a while I would feel okay, but as soon as I tried to move, those air bubbles would wreak havoc.
Friends brought dinner, flowers, gifts, and checked on my via texts over the next few days.
These flowers were actually from two weeks before, but they were still bringing me sunshine each day! Danielle (and Cam) had given them to me after I started my last period to give me hope for our "rainbow baby" (baby after a miscarriage).
I really hate being so helpless, but I felt so incredibly blessed by so many people. I am so grateful for Kevin and the incredible support he was to me. He took care of the kids and was constantly helping me if I needed to move, go to the restroom, etc. He slept on the other couch in the living room so that he would be able to help me during the night. There's something so humbling about having your spouse serve you, and I feel like this was a cool experience for both of us.
When Kevin and I discussed this moment later, Kevin commented that in that moment, his first reaction was that Colby needed to move before I toppled over. But he knew he needed to let him help. The more he thought about it, the more he realized that Colby was so unaware of his own inadequacy for the task, which is what made the whole thing so tender.
Kevin took the kids to their first soccer practice of the season, and right before they left, Tracy showed up. She came with the most beautiful sunflowers and a bag of gifts from Andreia. She was a great listener and even tried looking up ways to get rid of gas bubbles after a laparoscopy. She offered to help me walk around the house, so I held her arm as I shuffled around the house. It was sort of embarrassing, but also such a tender moment as this friend was helping me at my lowest point. When we sat down, she offered to rub my feet. Only if I wanted :) She explained that after her appendix surgery, having her feet rubbed helped so much with the circulation in her legs. So, I let her, and it makes me emotional just thinking about it. She sat on the floor and just rubbed me feet as we talked about all sorts of things. I became emotional as I talked to her about being released from Young Women's, and as I began to cry, the pain became intense in my diaphragm. I was just a mess, but I was so grateful for a true friend that would sit on the floor and rub my feet!
By Sunday afternoon, I was a little worried for myself about getting Brooke to school and taking care of Colby and myself during the day. We decided to ask Bev to come back down on Sunday night, so she helped get Brooke off to school on Monday, then took Colby with her to Flower Mound for her physical therapy appointment. Jerry watched Colby while she was at the appointment, and Colby LOVED their time together playing baseball, checking out Papa's mustang, and making a milkshake :)
Bev brought Colby back in time for us to go get Brooke from school, and I had changed her to "car rider" to make things a bit easier. It worked out really well to pick her up this way, and it was good practice for the rest of the week. The kids were a bit crazy that afternoon, but I think that they needed to burn off some energy! Jen Taggart brought us the most delicious dinner, and then I sent the kids outside to jump on the trampoline. Kevin arrived home as the kids were outside, so he had dinner, then gave the kids a bath so I could lay on the couch and rest. Kevin and Bev put the kids to bed, and Bev stayed the night again to take Brooke to school on Tuesday. It was SO nice not to have to wake Colby, and although I was still waking up to make lunches and help Brooke with her hair, the morning felt very low-key.
Bev had more appointments on Tuesday, but I felt confident that Colby and I would be able to manage on our own and get over to the school for pick-up. Mid-Morning, my friend Kiley texted and asked if she could pick Colby up for a playdate. The fact that she offered to pick him up was huge, and I appreciated the time to myself to nap. I have really relied on friends (and family) since surgery, and although it's humbling to do so, it has strengthened relationships in a way that only happens through accepting service. I told Kiley that I could pick Colby up before I grab Brooke from school, which was fine, but it was a bit harder than I thought to make that 15 minute drive to her house. But I did it, and that was progress :) We waited in the car line for Brooke, and that also went really well. The kids played really well together than afternoon, and we enjoyed some of our leftovers from the yummy meals people had brought the last few days. (Joanna had also dropped off two lasagnas, Brazi Bites, and a gorgeous bouquet of flowers while I was in surgery on Friday.)
The biggest milestone of Tuesday was that I was able to sleep in our bed for part of the night, haha. I had been sleeping well on the couch, but I figured I would sleep even better in my bed and my back was starting to hurt from the couch. I made it till about 4:30 AM, and then I had to wake Kevin up to help me to the restroom. I couldn't roll out of bed, and when he helped me out, I had that intense pain again at my diaphragm. I opted to transition to the couch, and although I told Kevin I would be fine out there on my own, he grabbed his pillows and joined me on the other couch. I know that Kevin loves me, but seeing his selflessness towards me after this surgery has really been sweet!
Wednesday was slightly better than Tuesday, and I was able to get Brooke to school on my own. Joanna had Colby over to play for a few hours that morning, and again, it allowed me a chance to sleep. After the play date, Colby and I snuggled up on the couch to watch a movie together. He has definitely watched more shows than normal since my surgery, but sometimes you just have to lower your standards, right?? It was strange to not have mutual that night due to my release as YW President on Thursday night, but it was nice to have minimal extra responsibilities. I was able to sleep the whole night in my bed on Wednesday night, and I was able to get out of bed on my own on Thursday.
I was just SO surprised that the recovery was such a slow process, but I guess I was learning patience, haha. Thursday was Joyschool for Colby, which gave me another small break. I really should have taken a nap, but Daleth called and it seemed like a good time to chat, so we talked for a while and got caught up on life. After picking Colby up at school, I let him watch another movie, and I worked on this here blog. I was trying to make good use of my down time, and I had already read the book (The Tattooist of Auschwitz) that Megan had given me. By 2 o'clock, I was so exhausted, so I laid on the couch and played "doctor" with Colby. He used his doctor kit on me, the patient, and I closed my eyes to rest. Before I knew it, we needed to go get Brooke from school. Pick-up went smoothly again, and then the kids came home and began working on friendship bracelets and all sorts of art projects.
For the first time since my surgery, I felt able to move about with minimal pain, but my stomach was still really swollen and uncomfortable. But I felt like things were getting better, which was huge after feeling so awful for 5 days! We had a simple dinner, then it was time to get ready for bed. Kevin was wanting to work on his talk for this weekend's Stake Conference, so I told him that I could put the kids to bed by myself. The night before I had assisted, but just sat next to Colby rather than laying on his bed. Since I had been doing better that day, I decided to lay down, and boy, that was a mistake. I immediately felt all those gas bubbles move and the should pain was unreal. I began moving, and Colby quickly said, "Sit up, sit up!!" He tried to help me, then made some comment about me trying to "go poopy on the potty". I reminded him that the pain was from my surgery, and when he offered to help me sit down I told him to just lay down. He refused, and said, "I can help you, Mom." As soon as I was sitting, he helped swing my legs over to the bed and then covered me with a blanket. It really melted my heart that he wanted to take care of ME.
He fell asleep quickly, then I checked on Brooke who was already asleep. Such good little ones :) I headed downstairs and rested for a bit on the couch before finally heading to bed. I was scared to lie down after what happened in Colby's room, but Kevin helped me through it and it wasn't nearly as bad as I feared.
I woke up early this morning to get ready before taking Brooke to school. I've been living in sweatpants and t-shirts and no makeup since Friday, but decided that I should put a little effort into myself before heading to my suture check at Dr. Nackley's office. I had asked my friend, Teddi Parr, to drive me to the appointment because I worried that I wouldn't feel well enough to drive, and it was definitely nice to just ride along. She came to our house at 8:15 and drove our car so that I wouldn't have to move Colby's carseat. I enjoyed my time with her and we drove to the appointment, and then she just hung out in the car with him while I was inside for 15-20 minutes. We chatted the whole way home and I was grateful for a chance to talk with a good friend.
Oh, and the suture check went well. The nurse (Nikki, who I love) said they looked perfect, and when I explained that I was still having pain, she commented that in her 13 years of doing this, she has noticed that the "thin" patients always take longer to recover. I wouldn't necessarily consider myself "thin", but I definitely felt on the slow end of recovery!
I go back next Friday for a post-op appointment with Dr. Nackley, and I'm anxious for that appointment to really discuss her impressions from the surgery and what we should do to move forward. I want to grow our family so desperately, so I hope she has some good ideas for us.
And I think that's the whole story! For now, at least.
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