The Jackhammer

 I don't think I truly comprehended how difficult year one as a mom was until now.

Rowland turns one on Saturday and I am looking forward to celebrating his first year of life, but his first birthday is also an opportunity to reflect on my first year of being a mom and truthfully it has been challenging. What I enjoy about blogging is that one can provide more context than a photo. I like being able to communicate the complexities of what I am feeling as well as being able to share the details of situations we have experienced as a family.  

I remember being pregnant. I remember how nervous I was about being pregnant. I was worried something would go wrong so when my ObGyn told me I have a "classic textbook pregnancy" at eight weeks pregnant, I felt so relieved. She was right. I was lucky to have had a relatively easy pregnancy up until the end. Shockingly, contractions were tolerable for me and when I went into labor on June 17th, I didn't realize I was in labor at first. I was admitted to the hospital at 6cm, dilated to 10cm within 2 hours and ready to push. That is where the 'easy' ended. I pushed for four hours and it was discovered Rowland was "sunny side up" a position where it is still possible to have a vaginal birth but much more difficult. At four hours we contemplated a c-section and when Rowland's heart rate started to dip and wouldn't recover, a decision for an emergency c-section was made. I remember being rolled into the operating room on a stretcher as the doctors and nurses prepared me for surgery. I remember hearing Rowland's heart rate and it was so slow. I remember asking the nurse what his heart rate was and she wouldn't respond. I remember vomiting. Suddenly I felt someone touching my tummy and then Rowland was here. When I heard him cry I cried with relief. When I saw his 8lb 2oz little body wiggling with such feistiness, he looked like an angry little lion, I felt a rush of love and joy that I have never experienced in my life. I knew this feisty little baby was my baby. Rowland was born the morning of June 18.

I wish it weren't the case, but if I had to describe my experience at the hospital, I would describe it as traumatic. After my surgery, all of the postpartum rooms were full so I was put back in a labor & delivery room where someone was doing construction above our room. We had to listen to a very loud jack hammer for four hours post recovery, including during "golden hour" which is supposed to be a peaceful moment for mom to have uninterrupted skin to skin time with her baby. Sometimes I feel silly for feeling so resentful for something like that. I feel thankful that we had access to care through labor and delivery, however I also feel like those first post birth moments were taken from me because of the jack hammer. We couldn't even hear each other speak. Maybe this is the theatre kid in me thinking of this as a metaphor, but the jack hammer above the hospital room feels like the metaphor to this year. I often find myself thinking about that stupid jack hammer. A jack hammer is loud and obnoxious. We found ourselves really focusing and concentrating on enjoying those first post birth moments to try and drown out the repetitive sounds of the jack hammer. Without the jack hammer, we wouldn't have had to concentrate on having joy in those moments, they would have just occurred naturally. 

At Rowland's one month wellness check, my pediatrician indicated Rowland was in the 40% percentile for weight. She asked if I was breastfeeding, and I said yes. She looked impressed and said "Wow! That's amazing. A lot of moms have trouble breastfeeding at first. Whatever you're doing keep it up as he is gaining great." I thought, "Well great. Even though I had a difficult delivery at least breast feeding is going really well." At month two, I noticed Rowland wouldn't breast feed for very long until he would start screaming in pain. I worried that his weight gain was slowing. I worried. And I worried. I would ask friends if they have had that experience? None had. I asked my Facebook friends as well. While many many moms had encouraging words of support to share through social media and similar experiences of their own, I couldn't shake off the feeling that Rowland's situation seemed a bit different. Many people around me shared their experience of slow weight gain with their baby and everything turned out fine. I tried to shake off my feeling that something was wrong. Rowland was still gaining weight just a bit slower. He's fine. Everything's fine, and yet I worried. It's that jack hammer again-- except this time it came in the form of worry and rumination, constant rumination. Again, we found ourselves concentrating on enjoying our time with our two month old, attempting camping (and it failing), attempting outings, and yet the repetitive sound of that jack hammer, my thoughts, day in and day out as I worried something could be wrong.

This continued as the interventions that were put in place by our gastroenterologist weren't working as well as she hoped. I stopped breastfeeding and began pumping so we could add extra calories of formula into my pumped breast milk. We started giving him omeprazole to prevent pain from what we believed was acid reflux occurring. We began poop tests, and blood work, and waited for the insurance to approve the sweat test that was ordered to rule out Cystic Fibrosis. By this point, Rowland was almost six months. I was weaning off pumping, and starting to get a hold of this mom thing and I felt like there was a light at the end of the "lack of sleep, don't feel like myself" tunnel. I was feeling like 'me' again. And yet, I would have moments of resentment wondering why we had to go through this. Why were we burdened with extra tests? extra doctor's visits? I had been enjoying outdoor outings I was taking with Rowland but there was still this underlying worry that something was wrong. I could feel it in my gut, and like that jack hammer, "something was wrong" would replay repetitively in my mind.

I always thought it was just anxiety, and I used to think mommy instincts were bullshit, but my gut, my instinct, was right. There was something wrong. It wasn't just a weight gain issue, or acid reflux, but a sign of something much bigger, Cystic Fibrosis. Fast forward to today, and I am now at a point where I don't always think about CF anymore. Currently, we have our routine, with an occasional hiccup (like our ER visit that was probably not related to CF but who knows?) and we have happy baby almost toddler Rowland who loves to walk and chase everyone and most of the time the joy I experience when I see Rowland play with other kids (outdoors) has overshadowed any worry I have about him getting sick/ being exposed to germs. It makes me happy seeing Rowland so happy. Sometimes though, I have some rough nights where I wake up in tears just wishing Rowland didn't have CF. I worry about the burden of treatments that will be placed on him throughout his life. I worry that he will feel different at school. I worry we won't get access to a modulator. I worry he will be hospitalized for lung issues. I wish Rowland wouldn't have to experience this in his future, but I know since he will, he will have resiliency and an appreciation of life I have never known. Sometimes I think about that jack hammer, and I think what if there was no jack hammer? What if my delivery wasn't difficult? What if Rowland remained at 40% percentile? What if I could have continued to breastfeed? What if Rowland didn't have CF? As if, perhaps if there was no jack hammer, there would be no CF. Of course, that would not be the case. 

I think I was triggered by a research article that just came out. It's a case study of a seven year old boy who is homozygous (two mutations) that are H609R (Rowland has one H609R). (Message me if you want to read it). It shows that the modulator Kalydeco has improved the situation in the case study which is really amazing news. What also was in that article was that he was hospitalized eleven times. Eleven. I felt sick reading it. He was born full term like Rowland. He is pancreatic sufficient, like Rowland. Eleven times. Every situation is different, every person even with similar mutations presents different. There are many different factors at play, but as a mom you can't help but wonder and worry. How have we avoided (excluding the ER visit) hospitalization? Is it coming? Thankfully, the case study shared he hasn't been in the hospital since being put on Kalydeco. 

I wish Rowland didn't have CF, but having CF adds a flavor of uniqueness to all of our lives that we didn't know we needed. What I mean by this is we have access to a supportive global community of individuals with different life experiences that come together for one purpose, to advocate for and find a cure. We have access to and understand the need for advocacy within the CF community that I didn't even know existed. I am now a part of a committee called the "Newborn Screening Steering Committee" whose mission is to improve equity, sensitivity, and timeliness in diagnosing babies with CF through the Newborn Screen because there is room for improvement. They care. They care that Rowland's newborn screen missed his diagnosis. They aren't willing to settle for 90% accuracy (and it is lower for those that are hispanic or black). It is so refreshing to see large organizations working together and effectively for the common good.

I needed to reflect this morning and I think it's because I'm not sure I have truly owned my unique experience of being a mom. It was as if I was avoiding admitting that I wish things had turned out differently, but (and for those who have a similar faith) I don't think that's what God want us to do, avoid our thoughts and feelings. He wants us to bring our thoughts, feelings, and anxiety to Him. By putting words to my experience, I feel peace with my experience as a mom, realizing that the intricacies of our joys and sorrows that we feel is what makes this life so unique and beautiful. 

And to end this blog post on a semi corny note (but for me it's therapeutic), one of my favorite musicals is called Next to Normal (yes, I still miss theatre so much). It is about a family's daily struggles experiencing their mother's bipolar diagnosis. At the end of the musical there is a song called, "Light" and the lyric that stand out to me most is, "Day after day, give me clouds and rain and gray. Give me pain if that's what's real. It's the price we pay to feel." It's true, to feel is to be human and while I wish things turned out differently, I am also learning to appreciate all the things that make us human-- Rowland's smiles, the brand new building where CF clinic appts our held, Rowland's walking, my emotions, taking Rowland to the beach and the park, bike riding, our home, friends and strangers helping us find Nutramigen, new friends, conversations with other CF moms, and so much more. It takes time to adapt to change and there was a lot of it this year.