Mental Health In a High Risk Pregnancy

I think about my pregnancy with Nick, how close we came to loosing him, the NICU, and our doctors and nurses every single day, to the point that I worry that it's unhealthy. On Wednesday, I sat down to write an article about the major lessons I've learned from having a child in the NICU, but it turned into an analysis of the long term side effects of a high risk pregnancy. Namely, the psychological toll a traumatic pregnancy can have on a mother, and why it is so difficult to get over it. It is set to be published on The Mighty sometime next week, but I wanted to go into more detail on my blog tonight.

As I was writing my article, I was able to put a finger on something that has been bothering me since Nick was born, but it was a feeling I haven't been able to articulate yet. Throughout my pregnancy, I had at least 15 ultrasounds that I can remember, and at least 6 were done vaginally (meaning the wand was inserted in order to give the doctor a better view of the cervix.) Each of the five times I was hospitalized, the doctor on call did a manual examination of my cervix. I received four steroid shots to help speed up the development of Nick's lungs, in addition to IV'S and blood work every time I was admitted. Whenever I started bleeding in the hospital, I had to call for a nurse and show her the pad, so that she could report to the doctor how much I was bleeding. She would then usually change my sheets and help me clean up by helping me wipe the blood off of my legs. Every time I went to go the restroom, I would have to use a pan so that the nurses and doctors could see how much blood I was loosing. The root of all of my problems-vaginal bleeding-was a topic that is normally so personal, was discussed by all eight of the OB/GYNs who practice at my hospital, four of whom are males. My normal OB and my MFM doctor are both men, and even though I adore them and would recommend them to anyone, I think talking about something like vaginal bleeding to someone who hasn’t actually experienced it takes away a little bit more of my privacy.

All of the interventions Nick and I received were absolutely necessary to save his life, and I am so thankful for the care we received, but the invasiveness of my pregnancy made it feel like an out of body experience. Even my c-section, which was necessary because my body had become so dangerous to my child that a doctor had to cut into my abdomen and take my baby out, was another example of how my body wasn’t my own anymore and required the intervention of a doctor.

The 30 weeks of my pregnancy took a great physical and emotional toll on me, and all of this happened before I met the NICU. From November-February, I either saw a doctor or hand an ultrasound every week. Throughout all these appointments and all of my time in the hospital and all my weeks on bedrest, my mental health was never once mentioned. I have started to see more articles about the need for better maternal mental health care, and I think it is absolutely essential in women experiencing a high risk pregnancy. I was told to relax and take it easy, but wasn’t given a concrete way to do so. Equally as important, I think doctors need to understand that a high risk pregnancy-even one that ends with a healthy baby-has the potential to be deeply traumatic. My body physically went through so much, and on top of all the poking and prodding, I was also balancing the logistical difficulties of bed rest; the fear that I would go into labor at any minute, and the fact that I had to leave my job. I think if we understand the psychological problems a high-risk pregnancy can cause, it will go along way to helping women recover from these experiences

How I Lost My Job Because of My High Risk Pregnancy

I go to Target at least twice a week, partially because I am always in need of formula and diapers, and partially because it has a Starbucks where I can get my iced coffee fix, and it also has those jumbo carts that can hold all three of my kids. When I was teaching, Target was my go-to place for everything I needed for school: Flair pens (if you don't have any, BUY SOME NOW!), bright colored reams of paper, glitter folders, binders that make me happy, and even more practical must-have items, like the multiplication flash cards and book bins that I found in the dollar section last summer and used all year. By mid-July, Target has all of their back-to-school gear out in the aisles, and since I don't have a classroom to decorate this year, I started thinking about the circumstances that led to me essentially loosing my job this past December.

On December 11th of last year, when I was 21 weeks pregnant, I was driving home from the hospital after my third admittance to Labor and Delivery. Earlier that afternoon, I had an ultrasound and appointment with my maternal-fetal medicine doctor. At this appointment, my doctor had given my a 50% chance of making it to 32 weeks gestation, had told my husband and I that it "was a matter of when, not if" I would go on hospital bed rest, that we should "plan on long term hospitalization in 2018," and that I needed to go on bed rest until I delivered (which was potentially four months away since I wasn't due until the end of April.)My doctor later told us that he expected me to deliver that week, and since I was only 21 weeks pregnant at the time, he essentially admitted that he didn't think Nick was going to make it. My bleeding had stopped temporarily (though I would pass a massive blood clot later that night and be readmitted in the morning,)so I was allowed to go home. While leaving the hospital, I called my principal. After being told my pregnancy and the life of my child were in serious danger, and that there was nothing anyone could do to help us, calling my principal was a crazy thing to do. At that point in the year, I had missed nine days of school because of my hospitalizations in November and the two weeks of bed rest that followed. I had already used all of my sick days and most of my vacation days, and as I repeated to my principal everything my doctor had just told me, she suggested we "circle the wagons," and that I should go on disability until me son was born. Everything seemed to be working out okay until the following day, when I was back in the hospital, when she emailed me to let me know that, in order to receive FLMA coverage, you have to teach in the school district for a full year. Since it was my first year teaching in this district, I didn't qualify for FMLA. So, since I couldn't physically be in my classroom to teach and I didn't have the option of going on disability until my son was born, and my principal needed a teacher, I had no other choice but to leave my job. Another way of phrasing that would be to say I lost my job because of my high risk pregnancy.

In fairness to her, my principal was wonderful. She is one of those compassionate leaders who is a principal for the right reasons, and always acts with the best interests of her staff and students in mind. She was so supportive of me and my family, and I knew she was genuinely worried about Nick and I. I had unintentionally put her in a bad position, and her hands were tied. I don't know if she would have given me my same position back, and I was already leaning towards staying home with my kids the following year anyways. There was nothing stopping me from applying at a different school this school year, even though it would have been such a pain to switch grade levels and learn the ins and outs of a new school again. I felt so much guilt that I had missed so many days with my students, and I knew they needed a teacher who could consistently be present and totally focused on their education. But still. It was hard to accept that this was for the best, and that my complicated pregnancy was having a detrimental impact on my students. It was a good reminder how replaceable we all are, but I am positive that not being on my feet all day and not having to deal with the stress of teaching was one of the main reasons that I stayed pregnant as along as I did.

Loosing my job also meant loosing my insurance coverage, and my paycheck. Thankfully, my husband has a great job with good insurance, so loosing my income wasn't too big of a deal. But, as we continue to receive bills from my hospitalization and the NICU, it's incredible to think of the position we could have been in. If I was a single mom, or if my husband was unemployed, we could have been in a position where I had no income and no insurance. From November to February, I had either an (expensive) appointment with one of my doctors, or a (super expensive) high risk ultrasound every week. If you factor in all my time spent in the hospital and Nick's 53 days in the NICU, we could have been-literally- hundreds and thousands of dollars in debt. Even with my husband's good health care coverage, we still paid a significant amount of money in hospital co-pays. This issue doesn't even begin to take into account maternity leave coverage. Nick was in the hospital for eight weeks, but I was only entitled to six (!!!) weeks maternity leave. I suppose other moms in this situation could have just filed for disability or taken a leave of absence until their baby left the NICU, but, again, I didn't have that option because it was my first year in the district. I cannot imagine-literally cannot imagine-having to do lesson plans, teach meaningful lessons, do recess duty, or physically be in my classroom while Nick was in the NICU. I think this attitude and these policies stem from the fact that most do not understand how traumatic a high risk pregnancy and the NICU can be (more to come on this issue!) It is simply not the same as having a full term baby, or having a difficult delivery, or having to drop a six week old baby off at daycare. But that is a blog post for another day.

I do encourage any of you with similar stories of poor maternity leave policies or health care coverage to share them with your state representatives if you feel comfortable doing so. If you go to your senator's or your district representative's websites, they will have either an email address or a phone number of how you can get ahold of them (if you call them, ask for the email or phone number of their health legislative staffer.) Even if nothing comes of it, you are at least sharing your story and making one person aware of some of the long term consequences of a high risk pregnancy or the NICU.

Five Months Old!

Nick is five months old today (three months adjusted age.) He has changed my life so much, it's hard to believe he was only born five months ago. Here is his monthly update:

Weight

Nick weighs a little over 13 pounds, so he's about a pound heavier than he was last month. He's wearing 3-6 month clothing and size two diapers :)

Eating


Nick has always been a great eater, and usually always finishes his bottle. He takes six ounces of his Similac Spit Up formula every 3 hours or so, and is still on his Polyvisol Vitamin every other day. He is an amazing sleeper, and goes for 8-10 hours at night (!!!) without waking up for a bottle. I began introducing solid foods, like avocados and bananas, to Annabelle and Graham when they were five months old, and, when they were Nick's age, they had already been eating rice cereal for a week or so. I will introduce solids to Nick based on his adjusted age, so I will wait a minimum of another month before I consider starting him on rice cereal, but likely longer. I know he still has a ways to go when it comes to head control and sitting up before he is physically ready to swallow solids, but, with his actual age being five months, it makes me worry that he isn't going to be satisfied with only being on formula. I will definitely consult his pediatrician and physical therapists before I start down that road.

Milestones


I am still waiting for his First Steps physical therapists to reach out to me to schedule his initial appointment (and hopefully they will this week), where they will do their own evaluation of him and come up with a treatment plan to help him with the milestones he is behind on. Every time I change Nick's diaper, I do the stretches with him that his PT and OT showed me at his NICU follow up clinic, and I think they are already making a difference. He seems to be doing much better at turning his head to the left instead of favoring the right so much, and he is smiling! He is consistently smiling when he sees me and even coos every once in awhile, which is so great and adorable. I know Nick will get there, and that he will develop at his own pace when he is ready, but it is so hard not to label him as behind. I think adjusted ages are a blessing, because it acknowledges that preemies are different and need to be given space to grow at their own pace, but they can be a curse at the same time. I am very goal orientated, and it's hard not to think that Nick is falling short, especially because he is a bit behind his adjusted age as well. But, I know the most important thing is that Nick IS developing and he IS growing, which I know is the most important thing.


Coming Up

I am excited for Nick to begin his physical therapy this month, and to see how he grows with the help of First Steps. He has been using an inhaler twice a day since Wednesday (which he hates, and it seems to make him almost hold his breath when I try to give it to him.) He is still wheezing consistently, but his doctor wants him to use his inhaler for two weeks before scheduling a follow up appointment. Hopefully his doctor is right and he does just have a respiratory infection that he hasn't totally gotten over, so hopefully this issue will resolve itself by August. Thanks for reading, and for rooting for my little man! :)

March of Dimes Gretchen Carlson Advocacy Fellowship Meetup

It's hard to put into words how incredible the past few days have been. I met and began working with the strongest, most accomplished women, whose passion for women's health and premature babies almost always stemmed from their own amazing personal stories and experiences. I shook hands and told my Senator and a staffer from my congressman about Nicholas, my hospital, and the doctors who saved his life, and advocated for the PREEMIE Reauthorization Act, which will fund research into the causes of prematurity and maternal mortality rates. Here is a quick summary of each day: Sunday After landing in DC, I checked into my hotel early and took advantage of being child free by walking around the shops at Union Station, drinking a latte in peace while it was still warm, and getting a manicure. The only scheduled activity of the night was a meet-and-greet/cocktail hour so that the fellows could meet and get to know one another. Prior to Nick being born, I knew nothing about the NICU, and only distantly knew of families who had a NICU baby. This was the first time I talked to a mom who had been in some version of my shoes, and talking about our shared experiences was powerful and healing. Stacy Stewart, the president of the March of Dimes, told us the following morning that we become advocates the moment we tell our story, and I think something as simple as telling another mom about what it was like to hear healthy babies crying through the walls of the postpartum wing of the hospital and knowing they are being comforted by their mothers, while your child is alone, on a different floor, on the first night of their life, and knowing that they really know and understand what you felt, and what I will never be able to fully articulate, was a very powerful and moving experience. I felt such a bond with the other ladies immediately. Monday After breakfast Monday morning, we heard from Gretchen Carlson, who started our fellowship, and Stacy Stewart. They discussed how often topics labeled as "women's issues" have a negative connotation, as if they only concern women and aren't a man's problem. The most powerful take away from this session is when Stacy began discussing how so many women are hesitant to talk about their premature baby, because they feel such guilt and shame because they perceive their child's prematurity to be their fault. She articulated what I struggled with in the days after Nick's birth so well that it made me cry (she actually stopped the talk to ask if I was okay), and still makes me tear up as I write this. After Stacy and Gretchen spoke, we heard from a social media expert about how to best get our message out and connect with likeminded men and women on Twitter,Instagram, etc. During this session, I brought up how I struggle with lumping myself in on social media in the same category as mothers of micro preemies, or women who have lost a child to prematurity. Another fellow responded that, though our stories are different, the NICU is a trauma that affects every mother, no matter how long or short her child's stay in the NICU was. Your NICU story is your story, and no one should discredit it. It was definitely the perfect response to my question, and gave me so much more confidence to continue to shout from the rooftops about what happened to Nick and I. Next, we heard from Mary Bono, a former representative, who shared advice about how to advocate and connect with members of Congress and their staffers. After lunch, a panel of lobbyists taught us more of what to expect on Tuesday when we go to the Hill, and taught us more about what makes politicians and staffers tick and how to best get our message across. Our day concluded with a presentation on the PREEMIE Reauthorization Act and the Maternal Health Accountability Act, the two bills we would be advocating for (see my pictures for more info on these bills!) After a short break, we headed to a casual dinner to end the day. I think dinner was actually the most powerful part of the week, because I was able to really talk and get to know more about the other fellow's backstories and reasons for wanting to be involved with the March of Dimes. Several of the fellows have lost a child, or had a baby in the NICU. Hearing about how they live with their grief and honor the memory of their child, or how they endured the ups and downs of the NICU and live with the consequences of prematurity and cope with the anxiety and guilt that lingers after bringing their baby home, was without a doubt one of the most profound and moving experiences of my life. On a more pragmatic level, it was really interesting the hear how different NICU's operate, and gave me so many ideas of programs I can start and ways I can improve my own hospital. I went to bed that night feeling emotionally and physically exhausted, but so full of passion for the advocacy work I would do the following morning. Tuesday Today, I was off to take on Capitol Hill. My first meeting was with Senator Todd Young,and, though we weren't able to schedule a face-to-face meeting with him or a staffer, we went to the Hoosier Huddle, which is a chance for constituents to have coffee with the Senator and share their concerns. It was another amazing experience, because I was able to shake the Senator's hand and thank him on behalf of my son for his leadership and work to improve maternal and child health in Indiana. Senator Young seemed genuine and thanked me for sharing my story with him. Next, I met with one of the staffers of my congressional representative, Andre Carson. This was particularly neat because I was able to talk about my hospital, which is also in his district, and share exactly how excellent they were for us, but also how there is such a potential for growth and improvement when it comes to improving the care for mothers on bed rest, in the NICU, and after they bring their babies home. I was nervous to meet with my representatives and definitely should have brought along deodorant in my purse, but it was powerful to not only share the statistics of prematurity and maternal mortality in the US, but to let these politicians and staffers know what it feels like to be a mother of a prematurity statistic, and the lasting toll it takes on your mental health to see your child lying in an isolette. I tried my best to stress how important it is the fund research into the causes of things like placental abruptions, and not just for the sake of science, but because it kills babies every day and so easily could have killed my son. I like to think my story resonated with them, and it really was a privilege to speak on behalf of women like me who don't have the resources or ability to go to Capitol Hill themselves. It really was a life changing weekend. I truly believe working with NICU moms is my calling in life, and to look back on everything that has happened over the past few months and believe that it was all leading me to this work gives me chills. I am so full of ideas that I want to take back to my state about ways to improve, and am so excited to get started.