These past two and a half months have been a total cluster of chaos for me, just as they have for pretty much everyone else as we try to navigate our new normal amid Covid. Since my husband was working on the Covid unit, I had to relocate so that me and Baby P would be distanced from the potential of getting the virus from his exposure. Being immunosuppressed and being pregnant have made it even more important to quarantine. Even as the world eases back into normal, Matt and I started with baby steps and finally after six weeks apart were able to move back in together last week. There is still a long road to true normalcy, but being back with my husband and pups under one roof is all I can ask for.
It had been a really rough six weeks that we were apart. We Facetimed and talked all day. We knew this is a sacrifice we had to make for my health and for Matt to be able to keep helping our community the way he did. That was all fine. What really had gotten to me is the fact that he was missing out on our pregnancy. He wasn't there to watch my tummy grow or feel the kicks of his son as he got stronger each week. He wasn't here to talk to him or play him music. It broke my heart that he was missing out on these moments with his first born baby and selfishly I wished he was there to share it with me too. I spent countless nights crying myself to sleep over our situation. I know that we could have it way worse, I am totally, completely, 100% aware of that and I am thankful for what we have. But that doesn't change the fact that I mourned this time we missed as a family. Now that we are back together we are catching up on all of those things we missed. He tries to feel the baby kick everyday and has been taking in all of the little moments. This health crisis is so up and down, we aren't sure if there could be another spike that would force us apart again, so we are appreciating each day.
Of course there are other things that won't be "normal" about this pregnancy during Covid. Doctors visits alone, no traditional baby shower, less time with extended family to share this experience with. This list will continue to grow I'm sure, but the biggest hit to my heart will always be Matt missing out on these moments. Even now that we are reunited, he still asks hopefully before every doctor's appointment if he can come. As a healthcare professional he knows fully well that the answer is no, but it is sweet he still has a glimmer of hope.
As a natural planner and control freak, I was STRUGGLING with the uncertainty of when we would be back together, when I would be back home, and just the chaos of bouncing from living situation to living situation.... all while pregnant. Now that I am back home, my mind has filled with other anxious thoughts... What if we are separated again? What if one of us gets sick? What if the baby gets sick? The way I dealt with this was by taking the time to acknowledge what has changed and what we will "lose" because of this situation, but then moving past it. How I have been moving past it, is by focusing on all of the GREAT things about being pregnant at this time.
I wanted to share these with you all to hopefully provide a positive perspective when so much of what we are seeing day to day is quite the opposite. No matter your situation, I challenge you to come up with your positives for where you are in life right now.
More "me" time and time to appreciate baby
Since I have been quarantined, I have had a lot more "me" time. A lot more quiet time, nights alone in bed, time to think, time to reflect. This has actually been a welcome shift from the constant stimulation my life usually throws at me. During these times, I have been able to really be present with myself and my pregnancy. I am able to actually take time to appreciate every little movement my baby makes and every change that is happening to my body. I am also able to be more present in my faith and reflect on how lucky I am to have a healthy baby who is growing his way into this world. I've had time to appreciate what a gift and responsibility this is, and make sure I am feeling confident
More time with close family
One perks of having to bounce from living situation to living situation was getting to spend more quality time with the family members I was staying with. Especially being pregnant, it was nice to have them there to get to see and experience it with me. Usually this would have been an experience mostly shared with my husband but instead I've gotten to share the anticipation and exciting little moments with my parents as well. I am thankful for this time where they got to be with me while their grand baby was growing!
Comfort and ease of working from home
Not being able to leave my house has allowed me to work in sweatpants from the comfiest seat in my house for almost my entire pregnancy so far. I am able to sit in weird positions to save my aching back without coworkers looking at me like I'm nuts. I am able to let my pregnant belly hang out of my too small t-shirts because I just didn't feel like buying maternity ones. I am able to stop and meditate for 10 minutes when I am feeling too overwhelmed. I am in the most comfortable work environment possible for being pregnant.
Less pressure from the outside world
This has been a big one for me. I was insecure about my body changing (I've actually ended up loving it so far, but that wasn't necessarily going to be the case). Instead of having to be on display with my changing body and hormonal acne, I get to grow and change in privacy. Of course, I like to share things via social media/ the blog and there will be posts about all of that in the future, but that is my choice to share. I am free from unsolicited daily judgements in my own home. This doesn't just go for physical appearance. By being pretty isolated, I have also avoided unsolicited pregnancy judgements. Things like... You're really eating that? Do you think thats good for the baby? Oh well when I was pregnant.... I am in a safe environment with those closest to me who love and support me. This has lowered my stress a ton.
Something to look forward to in all of this craziness
I saved the best for last. Despite the world breaking down around us and all of the negativity circulating, we have the most positive thing happening in our lives. We have a new life we get to bring into this world in a few short months and a new little human we can't wait to get to know. As my due date inches closer, I feel like everyday is Christmas Eve and I'm anticipating the best thing right around the corner. Which we are! This has given me a lot of focus, hope, and purpose during this time. I have been able to stay strong because I am staying strong for my baby. I have been able to keep pushing forward even when I want to break down, because I know we are getting the greatest blessing.
One of the questions I have gotten the most around my pregnancy is how my struggle with Crohn's has impacted my fertility, when to try to conceive and my pregnancy in general. Since it is World IBD Day, I figured what time could be better to get into this topic.
I will start by saying that I came into trying to conceive already pretty discouraged after years of being told it was going to be difficult for me because of my health. I had gotten and read so many mixed messages about how IBD can affect pregnancy. I came to the conclusion that no one really knew for sure and we were just winging it really (kind of like a lot of other things with autoimmune diseases). The biggest takeaway I got from my doctors though, was that my body would not be able to sustain a healthy pregnancy if I was not healthy myself.
Our plan was to wait to start trying until I got my health to the best point it could be. I continued with Remicade, focused on what I was eating and tried to manage my stress. This had always been my approach though so I wasn't sure how even with an increased focus, this would change my situation. I truly think it was the mental/emotional shift that moved my health in the right direction. I realized that IBD had more of just a physical impact on me; I had to deal with the emotional impact as well. I started therapy to deal with the guilt issues and there were a lot more than I thought... Guilt around being sick, anxiety around my health, fear of being able to be a good mom. The biggest thing I had to tackle was my inability to have faith that anything could go right for me health wise since it seemed as if there was always something else wrong I had to deal with. Now looking back, I don't even know how I could go into pregnancy with this belief that I was doomed for failure. I developed tools to handle getting difficult medical news and dealing with adversity in a more manageable way. I was in therapy for about a year when I finally felt ready to try to get pregnant. During this year I also worked through stress management and developing healthier ways to cope with stress, which I think made one of the biggest impacts on my IBD. I re-prioritized my life as an effort to reduce stress and focus more on my health and I definitely saw an improvement in both my body and mood. My Crohn's was never technically in remission, but when I felt like I had done all I could, I decided we couldn't wait for perfection or we would be waiting forever. It was time to trust myself; trust that my efforts were beneficial and trust that my body would know when it was time.
Luckily, that time came. If you read my post about figuring out we were pregnant, you know that the month it happened was actually the month my doctor said to STOP trying because she was worried about a thyroid issue. Well the universe and my body wanted what it wanted because we got a big fat positive. I was terrified at first that something would go wrong with the pregnancy and that my body wasn't well enough to sustain it. I went off all of my medication to control my symptoms besides Remicade. This was an adjustment, but certainly worth it to keep baby healthy. We will get into Remicade more later.
During the first few weeks, as I not so patiently waited for our first doctor's appointment, I was very worried because of pain in my abdomen. I couldn't decipher whether the pain was from my Crohn's symptoms or something being wrong with the pregnancy. My pain is pretty consistently on my lower right side so of course, whenever I consulted Google, I was certain I had an ectopic pregnancy. I was so blessed when at our first appointment, my OBGYN said things were looking fine.
Throughout my first trimester, I felt downright horrible between pregnancy nausea and constipation along with my regular Crohn's problems. I also felt very limited on what I could eat since nothing besides carbs were appealing to me and because of my IBD, I don't eat gluten. Around 8-9 weeks, I started to develop increased Crohn's symptoms which made it even more difficult to eat. I ended up losing a significant amount of weight in my first trimester which my doctor was concerned about. I was also very worried that my inability to eat would result in my baby not getting the nutrients he needed. Since all of these concerns were valid and related to my IBD, I began seeing a high risk OBGYN in addition to my OBGYN. I have and will continue to get growth scans done at that facility to track baby's growth in more detail to make sure my IBD symptoms or Remicade aren't negatively impacting him at all. In conjunction with the high risk OB, I also started to see a genetic counselor. We were already planning on seeing a genetic counselor for genetic testing, but she was able to go more in depth with us into the risks/benefits of my Crohn's medications.
Not only was it comforting to have additional medical professionals to consult with, but they also provided me with a lot of information so I feel confident making my own decisions especially around medications to stop or continue.
In addition to the trouble eating and maintaining my weight, I would say the biggest challenge has been figuring out what to do about Remicade. This is another area where the mixed messages are abundant. When I switched to Remicade about three years ago, I did so in part because I would be able to stay on it through pregnancy. From what my doctors had told me, this was the safest Crohn's treatment for me with the most studies around pregnancy. As I moved into my second trimester, I started to have more in depth conversations with my doctors about what my Remicade schedule would look like. No one really seemed to be on the same page with what to do. Mind you, at this point my symptoms were worse, but my blood work was the best it has been in five years because WHY would I expect anything with IBD to make any sense. My high risk OB told me to ask my gastro and my gastro said to ask my high risk OB. There are studies that said Remicade passes over the placenta in the third trimester which could be risky and then there are studies that say that it isn't harmful. I have spent countless hours researching Remicade since it seemed to me that I would have to be the one to make the final decision. Being neither a gastroenterologist or an OBGYN, this is terrifying. After a lot of back and forth, I decided with my OB that it would be best for me to continue on Remicade so as not to risk a Crohn's flare, especially since I was already having some issues. Basically, it is less risky to have a bit of the Remicade pass on to the baby in order to keep my body healthy and to be able to nourish him. The decision was made.
And then Covid happened. From my understanding, the risk Remicade poses to the baby is having a weakened immune system once they are born. In the old world, this wouldn't have been such a concern, but now, bringing a baby into the world with an already compromised immune system seems like one of the most terrifying things I could do. More conversations and back and forth's occurred between me and all of my medical team and there was talk about discontinuing the Remicade, with my last infusion being last Friday (21w5d). I came to terms with this decision and started on Apriso, in addition to my Remicade, so that I could have that to keep my inflammation at bay once I stopped Remicade.
As more studies come out, I am realizing that there really is no answer on what to do when you are pregnant with Crohn's and on Remicade during a global pandemic. Now we aren't sure what is best for me and the baby. Try to get one more Remicade infusion before he gets here? Stop all together just to be safe? As much as my medical team is working to provide me with the best advice, everything is uncertain now and I don't think there are any straight answers to give.
That is where I am at in my pregnancy/IBD journey at this moment. I'm trying to stay nourished, minimize my stress and figure out what my decision will be around continuing Remicade.
I am only a little more than halfway through my pregnancy so I'm sure there will be a ton more twists, turns and medical changes along the way. Right now, there is no indication that my Crohn's will prevent me from having a vaginal birth since I haven't had any surgeries to resection my intestines. As of my last appointment, the baby is growing on schedule and I have my next appointment to check on him again in just a couple of weeks. I pray everyday for our baby boy and I thank God that despite what was stacked against us, the baby and I are doing well.
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.
Welcome to my unfiltered commentary on crushing chronic illness in your 20's and everything that goes along with that.