Something that I found terrifying happened the Monday after my D&E. David had to go back to work. I knew he couldn't stay out forever, but still, I was so terrified of being alone with the kids. It seemed like those were the times that I couldn't think about anything but Katie.
The first day he went back went surprisingly smooth. He was going to get off early to go to an appointment at the eye doctor and we were going to meet him there, just to have something to do. As odd as it was, I looked forward to that. Things just felt better when we were together as a family.
The next day, however, sucked. I woke up, got dressed, went to the kitchen, and cried for probably an hour while the kids played in the den. I knew it wasn't good for them, but I literally felt powerless to stop it. I'd get them whatever they needed in terms of food and things like that, then go back to crying. I was just going through motions. I didn't even attempt to do any school with Joseph. It was a bad day. David called to check on me and when he saw how poorly I was doing, he came home a little early to be with me. We talked, I cried, and we took the kids to a park to give them a diversion. The next morning, I woke up, he went to work, I got dressed, went to the kitchen, and cried for another hour. Same story, different day. I knew the kids couldn't possibly understand all of this and, as much as I shouldn't be expected to hide my grief (no loss mom should be expected to), I also knew I had to do a better job of at least functioning for Joseph and Elisabeth. I was scheduled later that morning to go to my doctor's office to have my blood work done to check me for infections that may have killed Katie. I wasn't supposed to see my doctor while there, my post-op appointment wasn't scheduled until about 2 weeks later. I was just to see the lab ladies. Somehow I got myself and the kids together and went to the appointment. The longer I sat in the waiting room the more I struggled to keep it together. The more pregnant women I saw, the worse things got. By the time nurse Gay opened the door to get me, I had started crying. When she hugged me, I really lost it. "Let's just get you to see him for a minute while you're here today." ("Him" being Dr. Lowe) she said. I told her no, that I knew he had other patients and he needed to focus on them. And she just kept saying "No, he'll want to see you."
I guess maybe someone went to get him, because we walked down the hallway immediately and, when I turned the corner, he was standing there waiting on me. Jojo and Lizzie were right behind me. Joseph asked him right away "Dr. Lowe, is Katie really gone?" Dr. Lowe just looked straight ahead at him and said "Lisa, what are we saying about this?" I just said "Joseph knows the whole story, you can say whatever you want." He took us to his office and closed the door. He asked how I was eating. Not well. He asked how I was sleeping. Nope, not well, either. I told him I was standing in the kitchen each morning and crying and basically just barely taking care of my family's basic needs. He told me these were all symptoms of PTSD, which is super common after miscarriage (also common after infertility), particularly a later miscarriage like we had with Katie. I told him I felt like I was barely functioning and he said he wouldn't expect me to be doing any better than I was. I told him it was a less than a week before Christmas and I didn't know how I'd be able to do holiday stuff. So we started talking about antidepressants. Those who know me know I don't like taking meds I don't need. But honestly, in the spirit of vulnerability, I needed something. I knew I did. If nothing else, for Joseph and Lizzie. Since I was (and still am) nursing Lizzie it needed to be something safe for breastfeeding and also something safe for pregnancy should we get pregnant again. I told him right then that we wanted to try again and he totally agreed. He was so encouraging about it. He wrote me a prescription for the lowest dose of Zoloft. He told me if the lowest dose wasn't effective to call him and we'd do more. And he told me to stay on it as long as I needed. So I went straight from the office to CVS and picked it up, and started on it that night. And I don't regret it, looking back, even one little bit.
For several days I noticed no difference, which was discouraging. I was still crying a lot, still felt like I was just barely going through the motions. Then, two days before Christmas, I decided to start taking it in the morning, instead of at night, as I had been. And the difference was amazing. Did it magically make everything okay? Well of course not, nor was I looking for that. But, for the first time in almost 2 weeks, I was able to get some perspective. Did the whole thing still totally suck? Yes. But did I feel like there may still be hope for the future? Yes! I started to gain perspective that God DID still have a wonderful plan for us after all. On Christmas eve, as I ran around the house cooking and cleaning for our guests that were coming the next day, I told David "For the first time since she died, I feel hopeful!" I even found myself singing a Christmas song while I was cleaning, less than two weeks out from the darkest day of my life. I was amazed.
Christmas Day was really lovely. I still couldn't believe what had happened, but dare I say, I felt some happiness. I had two beautiful living children, an amazing husband, and a house full of people there to celebrate the birth of Christ and overfill on delicious food. It was a good day. It felt like Christmas, more than I thought it would. We had also decided the next day to go to Myrtle Beach for 4 days. That is not our typical post-Christmas tradition, but we decided a few days away as a nuclear family may help start the healing process. So there was that to look forward to. We ate ,visited with family, opened gifts, and my eyes were opened to the thought that 2018 may be a year of hope for our family, despite the past.
|Christmas Day 2017|
|Christmas Day 2017|
The next morning we got up and headed out for North Myrtle Beach, just the four of us. Going into it I truthfully didn't have high expectations for this trip. How could I be happy at the beach just weeks after what had happened? And to make matters worse, the weather forecast wasn't looking good. It was going to be unseasonably cold, even ICY, at the beach. We were not sure how much would be opened in the off season. We didn't even know if we'd find anything to do, aside from enjoying the indoor pool and hot tub in the same hotel we always stay in in the summer. But off we went. And it ended up being amazing. The day after we got there we woke up and took the kids to Ripley's Aquarium. While we were walking around I remember thinking "Wow, I actually feel kind of happy!" It was such a sweet family time. We talked about Katie, but we also talked about many other things. Her death was not all-consuming while we were there. I also ate - a lot. And began the process of gaining back all that weight I'd lost (although I'm still not certain if that's a good thing or not, lol). We ate out every.single.meal - breakfast, lunch, and dinner - for 5 days. And any other time I'd probably be horrified by that, but I have to say in this case it was amazing. It was ridiculously cold, even for the winter, at Myrtle Beach. It was 19 degrees one morning, and the bushes outside our hotel had ice on them. Several of the places we wanted to go while there were closed for the off-season. But we made the best of it all. It ended up being a very healing few days.
|We were right around this area in the aquarium when I saw how much fun the kids were having and I realized that I, myself, was starting to be able to feel something other than sadness. <3 nbsp="" td="">3>|
|Cold weather, but we were not discouraged|
|Even Joseph enjoyed the hot tub, which he called a "warm tub" because "It's not THAT hot."|
|WonderWorks at Broadway at the Beach|
We returned on December 30th. The next night, things hit me hard again on New Year's Eve. I went to bed right after midnight, after watching the ball drop, realizing that 2018 was supposed to be the year we brought home a new baby, and we wouldn't be doing that. I cried myself to sleep. Then I got up the next morning, determined to make 2018 "our year" one way or another.
On January 4th I had my post-op appointment with Dr. Lowe. I came loaded with questions. A LOT of questions. I had always written off all of our losses as unfortunate coincidences, but I just couldn't do that anymore. I felt like there must be some issue we were missing. Dr. Lowe probably sat with me 45 minutes while we discussed ideas, things we could test for. Finally, he told me he was going to call a well-known reproductive endocrinologist in town, a man known for his ability to figure out recurrent pregnancy loss, and get his thoughts as to a comprehensive list of things to test for. He also told me the wanted me to wait 2 cycles to start trying again, to give my body time to totally heal.
48 hours later, a nurse called me and told me I could come pick up my testing orders and take them to LabCorp to have my blood work done (since David works for LabCorp we get all lab testing free, thus we try to always use them when possible). I made an appointment the next day at the LabCorp patient service center and went to have blood drawn. And draw blood, they did! 13 tubes of it! It was so much that the phlebotomist left the room to confirm my lab orders and make sure that was correct. She was shocked at how much she was going to be drawing (although it's still less than I give at the Red Cross, so I didn't think it was a big deal). I felt good about the fact that this testing was going to be extensive.
In the meantime I also got my results from my prior blood work and from Katie's chromosomal analysis. I had no infection, and Katie was chromosomally normal. She, and I, appeared to be perfectly healthy, until something happened. So that was it, this extensive blood work would be our last opportunity to figure out why things kept going wrong. I was absolutely terrified of it all coming back normal, and of there being no answers at all.
A little over a week later, results were back. I saw them on the LabCorp patient portal first, but I didn't know what to make of some of them. But Dr. Lowe called me that morning. Two things were revealed...
1) I am heterozygous for MTHFR c667t, which is a relatively common genetic mutation. Normal people carry no "bad" copy of this gene, then for those that do there is the possibility of carrying one copy or two. Obviously, two is worse, and I only carry one, so that's one small piece of positive news. But ideally you don't want to carry any bad copies of this. Now, how this plays into pregnancy loss gets tricky. Basically, the medical evidence over the role that the c667t mutation plays in pregnancy loss is quite conflicting. Some studies have shown significance (as in it does tend to lead to additional blood clotting, causes an inability for those affected to properly process folic acid, and also an inability to rid the body of toxins properly) , yet others have shown no real link. Thus, most mainstream medical providers do not believe it to be significant in the occurrence of recurrent pregnancy loss. My doctor is included in this and, although he and I disagree on this point, it doesn't worry me because MTHFR is something that I can manage by myself through proper diet and by limiting my exposure to toxins as much as possible (we have moved from eating organic fruits and vegetables to an entirely organic diet and have also become extremely picky about what products we allow in our home in general in terms of toiletries, cleaning products, etc etc). So, while I personally do feel like MTHFR has played a role, it's something I can manage on my own. My OB does want to keep a check on my homocysteine levels (which often run outside of normal range in MTHFR) for my own health, so that's also a good thing. So, MTHFR, while an important finding in terms of my overall health and potentially in terms of our pregnancy history, is the less important of the two things discovered in this blood work.
2) I was found to be homozygous for the PAI-1 4G/4G polymorphism. Never heard of it? No worries, you and 99.99999999999999% of people in the world have not heard of it. Very few physicians I'm finding are even familiar with it, outside of hematologists, cardiologists, and OB/GYN who have experience with testing for and treating recurrent pregnancy loss. I'm tend to be a researcher and have spent hours doing research on this factor and the information that exists on it is pretty limited, worldwide. From my understanding, this polymorphism was not even discovered until some time in the 1990s. PAI-1 stands for Plasminogen Activator Inhibitor-1. Normal individuals are PAI-1 5G/5G. Then there is a somewhat common variant of the trait called PAI-1 4G/5G. Then there is the 4G/4G version, which is quite rare and the most severe form. What this means is, when a normal (5G/5G) person's body produces a blood clot, their body has a mechanism that keeps the clot at a healthy level and helps dissolve it if it starts becoming problematic. In individuals that are 4G/5G, their body does a less successful job at breaking down clots. And in a 4G/4G individual, like myself, the body does a really, really, really crappy job at breaking down clots. It is quite heavily linked with infertility (and of course my endometriosis and MTHFR is linked to that as well) and recurrent pregnancy loss. If my body produces any clotting in the placenta or umbilical cord during pregnancy, my body lacks the mechanism to easily dissolve that, thus cutting off circulation to the baby. It is also linked to IVF implantation failures (hence, the loss of our four adopted embryos), and some anecdotal evidence has even linked it to 3rd trimester losses and cases of fetal distress. So, part of me now wonders if marginal cord insertion was really the cause of Joseph's sudden distress at 37 weeks, or if it could have been this. Or both. I have no idea, really. Whether or not this was the sure cause of death of Katie or any of our babies, we can never prove. But it does seem to be the linking factor in most of it. This mutation can also have a very high impact on my own health. It is linked to a substantially increased risk of deep vein thrombosis, heart attack, and other cardiovascular events. There are also pretty conclusive links being explored between this polymorphism and diabetes, morbid obesity (needless to say I've started watching what I eat even more), increased susceptibility to viral infections, and poorer outcomes after health problems, among other things.
SO, where do we got with all of this? Well, lots of places. Like I said, I am managing MTHFR on my own. I've never been more conscientious about what I'm putting in and around my body. I've switched to a prenatal vitamin with folate instead of folic acid, which is the form generally absorbed by those with MTHFR. I've also switched my other supplements to methylated brands which are easier for MTHFR individuals to process. In terms of PAI-1, my OB will have me starting twice-daily Heparin shots the moment we get pregnant again. As I stated in yesterday's post, we actually got pregnant this past month (apparently I do have some fertility in me after all!) but were not able to get Heparin started quickly enough and, within 48 hours of the original positive test, I was already in the process of miscarriage. Thus, my OB has now called Heparin in for me to keep here at home, so that I can start it immediately next time and we can hopefully get ahead of this issue. Heparin is a blood thinner that will keep my clotting in check during pregnancy. Since PAI-1 can also affect my overall health, I've taken a very intense focus now on cardiovascular health especially. And I'm heavily concentrating my efforts on detoxing my body and lowering my underlying inflammation, which is also a factor in all of this. I'm learning more every day, and I feel more empowered than ever to take healthy steps for myself and for future babies.
Last but so far from least, I have to spend some time talking about the things our friends did for us during this challenging time. I can't even being to outline it all. People brought us dinners. People sent us flowers. The amazing mommies from our play group made me an incredible gift basket, filled with items not only to help us to remember Katie but also just to bring comfort to myself, David, and the kids. Another friend had a memory box made for Katie for me to keep all of these treasures in. I just can't express how loved we felt. I could go on and on, but it would never be enough to say thank you. It makes me feel like we weren't the only ones that loved Katie. So many people have been instruments of God's love for us during all of this.
|My dear friend Jessica had this Christmas ornament made for Katie, along with this sweet note. I treasure both.|
So, where are we now? I can say that I'm constantly surprised by God's grace. His mercies really are new every morning. Some days I float through the day easily, occasionally reflecting on the life of Katie and of all of the babies we've lost, but also praising Him for the two living children He's given us in between all of the challenges of growing our family. Other days I still feel discouraged...how could I have a 20% success rate at taking a baby from embryo to healthy newborn and possibly think that we'd be able to do it again? How can I reconcile that we were allowed so many weeks with Katie and so much time to love her, only to have her taken suddenly? How will I possibly survive the anxiety I'll feel if we're able to get pregnant again? What if we can't get pregnant again? I even have days when I fear the adoption process awaiting us one day. What if that process is not straightforward, either? It always feel like building our family is a struggle. Yet, whenever I have these thoughts, somehow He always allows me to wake up the next morning with a hope for the future, and an anticipation of things to come. One of my biggest fears was that this experience would always taint my view of Christmas. I think I remember mumbling something to David in Dr. Lowe's office that horrible day, something along the lines of "How could this happen two weeks before Christmas?! Now my view of Christmas is ruined forever!" But it hasn't been the case. If anything, it has deepened my thoughts on Christmas. Because that's why Jesus came...so that this world wouldn't be all there was. So that one day, as much as my arms feel empty of 8 babies gone too soon, I'll be able to hug them and love them for eternity. One day.
For now, we continue trying to get pregnant, seeing what each month brings. We have set firm parameters around how long we'll try to have another child through pregnancy. I'll be 37 in May, and we can't go on forever. But I've shared those parameters with only a very few people. It's been a personal decision between David and myself, and I think we both feel good about it. But right now I'll just say, there's still time. And maybe it won't ever happen, and that will be our answer. But maybe it will. And either way, we feel so much excitement about the adoption journey ahead of us in the future. I've been off of the Zoloft now for an entire month, and I feel like it did it's job...it helped me gain some perspective, and now I no longer need it. Joseph seems to have processed Katie's death well...he still talks about her and asks about her, but he sees that mommy and daddy are okay, so he can be okay, too. Lizzie is blissfully ignorant of it all right now, but we'll always make all her siblings a real part of her life and of our conversations, just like we've always done with Joseph. Our family is healing. God is so, so good.
If you are a woman walking through infertility. Or your first loss. Or your 10th. PLEASE, I beg of you, don't be afraid to grieve. Don't be afraid to talk about it. Don't be afraid to do what you need to do for yourself - be that reaching out to a friend, avoiding a baby shower, taking an antidepressant. You are not alone. I see you. None of this is your fault. This is why Jesus died for us, so that there would be something more. You are so brave, and you are an amazing mom, whether your children live or not. <3 br="" nbsp="">3>
Thanks for reading Katie's story.