15 Month Update

My little preemie turned 15 months old this past Wednesday, so considering I have only written one other blog post in 2019, I think it's time I give a Nick update.

At 13 months adjusted, Nick can only walk 3-5 steps at a time, and can't stand up independently (without holding on to something, like a chair) and only babbles "ba ba" (no words yet.)


After a loooong winter and spring in which we basically moved into our pediatrician's office, Nick had tubes put in his ears last Friday. Nick had so many ear infections since Christmas that he was placed on Amoxicillin indefinitely until his ENT consult, in which the doctor described his ear drum as being "as stiff as a board" and explained that there was so much fluid in his ear that Nick was essentially hearing like he was under water. He explained that kids learn to communicate by imitating what they hear. So, if Nick was only hearing muffled sounds, it makes sense that he wouldn't be able to say words or babble much. The doctor also asked how Nick walks, and I explained that he could take between 3-5 steps, but then seems to lose his balance and falls over. The doctor explained that this could also be explained away by fluid build up in his ear, which could possibly be throwing off his inner ear balance. So, we went into the procedure hoping that the tubes would be a magic cure all to Nick's possible developmental delays, and he would immediately start talking, walking, and feeling better. 8 days later and the tubes haven't made a difference (yet.)

I know Nick is only 13 months adjusted, so it isn't fair to compare him to his fellow February 2018 babies, or to other one year olds who weren't, say, separated from their families for the first two months of their life. I have had so many preemie moms tell me their NICU grads were delayed but eventually caught up to their peers, as well as other mom friends who had full term babies who went on to experience some type of delay that required physical therapy or some other type of intervention. So, I know it isn't abnormal for a former 30 weeker to lag a bit behind his peers, and I know all babies develop on their own schedules and I don't do Nick any favors by obsessing over why he doesn't do things like point to toys he wants or react when I call his name.

But still.

The thing I always circle back to when I worry about Nick is how little is known about placental abruptions, and how no one can explain why it happened to us. Nick was evaluated for brain damage after he was born and obviously nothing major was detected, but the placenta-which controls oxygen flow-started detaching at 11 weeks, and detached again at 17, 21, 29, and 30 weeks. Another way of saying that would be that Nick's supply of nutrients and oxygen wasn't fully functioning since he was 11 week old fetus, and for 19 weeks-from the 11th week of pregnancy until he was delivered at 30 weeks-his oxygen flow was in one way or another disrupted. I'm sure major damage would have been detected in one of the gazillion ultrasounds we had, but what if it wasn't something major? What if the drasn't fast enough during my C-section and didn't deliver him in time to be totally in the clear? What we do know for sure is that Nick didn't have a normal birth experience. He wasn't immediately placed into my arms after birth, he didn't spend the first hours of his life cuddled next to his mother, and for the majority of the first 53 days of his life, he was all alone in intensive care. There is so much literature on how important immediate skin to skin contact and touch is on newborns immediately after birth-how could babies who are separated for weeks from there families and who are instead exposed to bright lights and medical testing and loud beeping NOT grow up to be different?

this month when I was picking Nick up from daycare, his teacher handed me hispacifier and commented on how the other kids (he's the only one in his class not walking) would walk by and take it out of his mouth, and he wouldn't be able to get it back from them. Also, this week when I was dropping him off, his fellow 12-24 month olds were sitting in a circle and pointing to their nose, ear, etc, on command. Nick doesn't point, wave, play with toys, imitate me, play games, or shake his head-all things he should be doing by 13 months. He definitely knowsI'm mama, recognizes his family and is so darn sweet, but when it comes to communicating, he seems miles behind his peers. And all of this is exactly why I'm so passionate/crazy about prematurity. Because what if something happened to Nick during my pregnancy, during his delivery, or while he was in the NICU that is going to stay with him forever? What if he won't be able to just "catch up" like everyone says he eventually will? Nick has already been the NICU baby who slept by himself every night in the hospital, and now he's the runt of his daycare class who gets his toys taken away from him by bigger kids.

Pregnancies After the NICU

Nick is almost 13 months old already, he has eight teeth, he loves to feed himself finger foods, and is so close to taking his first steps. Over the weekend, I packed away his nine and 12 month outfits to pass down to my nephew, as Nick's pudgy thighs and belly are almost ready for 18 month clothing. I know the baby stage is coming to a close for us…which makes me want to do it all over again.

While I was on bed rest, I vowed I would never be pregnant again. I even told my husband that at some point, I would start begging him for another baby and he would have to resist, because I could never go through another pregnancy like I had with Nick. At my yearly appointment, when I asked the NP hypothetically what another pregnancy would look like, she said that because of everything that happened with Nick, even if I had a totally routine pregnancy, it would still be considered high risk. She cautioned me that before we did anything, I should have a consult with maternal fetal medicine to discuss the likelihood of having another abruption, and the pregnancy would likely be closely monitored and require extra ultrasounds, extra appointments, etc. I remember how sick I was from the beginning with Nick, how I threw up almost daily and was exhausted trying to balance Annabelle and Graham, my job, and my pregnancy. But still.

I'm not stupid. I know I'm so lucky to have three healthy children, and I'm exceptionally fortunate that Nick is alive and thriving. I know our complications were out of the blue and rare, but I know that my history gives me a higher risk for having a repeat abruption. But still.

The thing that would bother me the most if Nick were to remain our youngest is that my pregnancies had to end with an emergency c-section and the NICU. As fortunate as I was to experience a "normal" birth twice before Nick came along, I missed out on so much with him. In addition to the trauma of an emergency c-section and the devastation of having to leave Nick three days later and spend the following 50 days apart, I missed out on so many little things that I enjoyed with his siblings and looked forward to when I learned I was pregnant with Nick. All the small things new moms are so fortunate to experience-having their baby sleep in the same room with them on the first night of their life, getting to introduce the baby to his siblings within hours of their delivery, hanging out as a family in the postpartum room-are all part of what makes the NICU such a loss.

After having a high risk pregnancy, it amazes me that anyone can get pregnant, carry a baby to term, and have a drama free delivery. I feel so jealous when I see pregnant women who are clearly close to term and are still up and moving, and it frustrates me in hindsight that my body couldn't do that with Nick. I know we will likely never have another biological baby, but I still wish my childbirth experiences could have ended on a happier note.

One Year Later

One year ago yesterday,I fell asleep putting my then-four-year-old to bed and woke up a few hours later, still in her bed. As I moved to get up, I noticed my pants felt heavy and knew immediately that I had had another bleed (like before, the bleeding had either been one big gush or several smaller ones when I was sleeping, and I wasn't currently bleeding by the time I woke up.) I repeated the pattern I set in November and cleaned myself off, got dressed, woke my husband up to tell him I was going to the hospital because I had started to bleed again, and drove myself to Labor and Delivery. Knowing now what I do about placental abruptions, I know this was ridiculously foolish because the bleeding could have started again while I was driving, but at that point I didn't want to bother waking up my parents in the middle of the night to come to our house to stay with Annabelle and Graham, and I figured I would just wait to call them once I found out if I would be admitted again or not.

When I got to Labor and Delivery, the doctor on call decided to admit me right away so that I could see the maternal fetal medicine doctor the following day, and he would decide how to proceed. The nurses confirmed Nick had a heartbeat, and I was taken back to my room in antepartum.

Later that day, I had my appointment with our high risk doctor. Since everything that was happening seemed to be a repeat of the last time I was admitted in November, I assumed I would have the ultrasound, and then just be sent home for another round of bed rest. This time, the ultrasound must have been much worse than it was a month earlier, because I was given a 50% chance of making it to 32 weeks, and was told that at some point I would start bleeding again, and that would cause me to be hospitalized until I delivered (the doctor said it was a "matter of when, not if," I would face long term hospitalization in 2018.) My doctor explained that, at 21 weeks gestation, there was nothing he could do to help Nick or I, because Nick was not yet viable. In order to give me the best shot of staying pregnant another two weeks, I would need to go on bed rest until I delivered, and then in two weeks, I would come back to the hospital to receive my first round of steroid injections to help speed up Nick's lung development.

I definitely didn't grasp the seriousness of everything the doctor was saying during the appointment. Looking back on it, I can see that he was more or less guaranteeing Nick would be born prematurely, but at the time I didn't know that "see if we can get you to 23 weeks" meant "we'll see if Nick will survive or not." I remember him telling us "there are worse things than losing a child," meaning IF I made it another two weeks, Nick had a high chance of being born disabled or seriously sick. But, I was clueless about the significance of 23 weeks then and was stuck on the fact that I wouldn't be able to teach anymore, so the seriousness of the situation went over my head. It seemed strange at the time that he said it was okay for me to go home after the appointment, but I think that's because there was nothing he or any of the other doctors could do to save Nick if I went into labor. So, I was discharged later that day, and I remember calling my principal on the way home from the hospital to repeat everything my doctor had said, and she agreed that teaching was no longer a safe option for me. I remember feeling sad and deflated about having to leave my students more than the prognosis I had just been given.

A few hours later, I started to bleed again. I was more irritated than anything at this point, and drove back to the hospital. The doctor on call did a cervical exam to confirm I hadn't started to dilate, then basically shrugged and said it was more bleeding and there was nothing she could do, so I headed back home.

I fell asleep on the couch, and bled heavily and consistently throughout the night. When I woke around 6:00 the next morning, I discovered the heating pad I had fallen asleep on on my back was completely soaked in blood. As I climbed the stairs to get to my bedroom, I felt a huge WOOSH of blood and pressure. When I pulled down my pants to change, a blood clot the size of my fist fell out and onto the ground. I remember just staring at it and thinking, "holy shit, what the hell is that?" I didn't know if I should put it in a bag and take it back to the hospital with me so I could show the nurses just how big it was, but I thought that might be weird, so I took a picture of it instead (I was worried they wouldn't believe me or grasp how big it was, so I wanted proof.) I finished my lesson plans for the day (which, again, is insane given I had just passed a monster clot less than 24 hours after I got done hearing from a doctor how risky the future of my pregnancy was,)and headed back to the hospital. I showed the nurse who admitted me a picture of the clot, and was admitted again.

I spent the rest of the week on antepartum. I was told I would need to go at least 24 hours without any bleeding before I could get discharged, but I kept bleeding every night. The on call OB would touch base with me every morning during rounds, but I didn't have any further appointments or ultrasounds, and was basically there until the bleeding stopped. I had sleeves put around my legs that constricted and released every few minutes to prevent blood clots, but otherwise I was left alone. During the week, I found out that, since it was my first year teaching in the school district and I was working at a private school, I didn't qualify for FMLA (long term disability leave,) so I would have to completely leave my job instead of just going on extended leave. That also meant I would loose my paycheck, which wasn't a big deal for us, but was a blow to my self esteem. My biggest fear was that I would be stuck in the hospital over Christmas and wouldn't be home to spend it with my family, but I had worked out a deal with one of the doctors that if I was still there over Christmas, I could basically get a 24 hour pass to go home for the day. That made things a little bit better, so I spent the rest of the week doing online Christmas shopping and watching Christmas movies.

When I saw my high risk doctor again the day before Nick was born, he told us that he had expected me to deliver Nick this week. It's a miracle that Nick survived. The fact that I bled for six days and passed a giant clot but still managed to stay pregnant, and stay pregnant for another nine weeks at that, is a miracle. I have been dreading this week for awhile, and I thought it would be really emotional to relive all of these memories, but instead it just makes me so grateful for the doctors and nurses who cared for us that week, even if they were basically holding their breath too. I don't take his life or his health for granted for a second, especially on weeks like this.

Bleeds Two and Three

One year ago, on Saturday, November 11th, I spent the day running errands and cleaning my house: my older son, Graham, was scheduled to be baptized the following day (which turned out to be good luck, because my in-laws were staying at our home and were able to watch our kids while Cory and I went to the hospital.) I fell asleep early that night, and woke up a few hours later to discover that I had bled through my pajama pants and onto the sheets (like the first time, it had been either one big gush or a series of small gushes that happened while I was sleeping, instead of a continuous flow.) I woke Cory up, told my in-laws what was going on, and drove to the ER in the middle of the night. This time, because I was 17 weeks pregnant and in the second trimester, and aid came with a wheel chair and took my over to the labor and delivery wing of the hospital instead of staying in the ER.

Once I got to labor and delivery, I changed out of my clothes and into a hospital gown, and the nurse checked to confirm that Nick's heart was beating. After they determined that Nick didn't appear to be in any distress, the doctor ordered an ultrasound to assess the cause of the bleeding. After awhile, an ultrasound tech performed the ultrasound, and I remember asking her if she could tell us the sex of the baby. At this point, I was assuming the night would go like my first trip to the ER: I would have a quick ultrasound,which would show that Nick was fine and it had been another random bout of bleeding, and I would be sent home in time for Graham's baptism. When the doctor came into our room to share the results of the ultrasound, she told us that I had experienced something called a placental abruption, which meant part of my placenta had started detaching from my uterus. Even though it didn't appear to be affecting Nick, I remember the doctor saying that we would do "whatever we could to make it to 23 weeks," and that she would go ahead and admit me until I was able to see the maternal-fetal medicine (high risk pregnancy) doctor on Monday.

I think I would have been more stunned if I was able to process any of what the doctor told me. I had never heard of a placental abruption, and, since I knew nothing about prematurity at that point, I didn't understand what the doctor meant by saying we would try to make it to 23 weeks. More than anything, I was upset that we would have to postpone Nick's baptism after I had ordered a cake and invited our relatives (see all my previous posts about not processing this whole experience while it was happening.)

I spent the rest of Sunday in the hospital, and, on Monday, had my first appointment with the high risk doctor. As my pregnancy continued to get more serious, these appointments became a major source of anxiety for me, especially because the ultrasounds took so long (they lasted around 45 minutes, which always convinced me they had found something terrible.) At this point, though, I didn't grasp what was happening, and was actually excited for this appointment because I knew they would be able to determine the sex. We found out we were expecting a boy (which I sensed all along,) and the doctor cleared me to be discharged. The ultrasound did show that I had a partial placental abruption, and that my subchorionic hematoma had gotten worse, which had caused an "enormous" blood clot, which was likely the source of the bleeding. But, since I hadn't had any other bleeding episodes in over 24 hours and Nick appeared healthy, I was cleared to go home and spend the rest of the week on bed rest.

For the next three days, I got my first taste of bed rest. I spent at least 1/3 of the time googling placental abruptions and subchorionic hematomas, watching Christmas movies, and catching up on lesson plans and grading. Because I was still hoping to return to school the following week, I had plenty to keep me busy, and this round of bed rest was tolerable.

On Thursday morning, I was feeling achy and sore, and had mild cramping and pain in my uterus. I called my OB, who instructed me to come to the office for an ultrasound and to make sure I hadn't started dilating. The ultrasound came back normal, and the nurse practitioner I saw explained that sometimes blood can irritate the uterus and cause cramping, but everything else was fine.

The following afternoon, on Friday the 17th, I was making spaghetti sauce (which might have been violating my bed rest rules, but it's difficult to totally do nothing when you have kids to feed!) when I suddenly had an intense, horrible pain in my lower left side, near where my ovaries are. It came out of nowhere, and had me doubled over in pain. I took Tylenol and tried a heating pad, but I couldn't shake the pain, so we called my mom to watch our kids so we could go to the hospital. I threw up from the pain as we went to get in the car, was sweating and shaking, and started to bleed again on the way to the hospital. By the time we reached labor and delivery, I was a physical mess and convinced I was in labor. Once again, I changed into a hospital gown, and the doctor was called right away. He preformed the ultrasound himself, but determined that there was nothing seriously wrong, and, like always, Nick was totally fine. This time, I was shocked Nick was okay. I was so sure the pain I was experiencing was contractions, and, at 17 weeks, Nick was weeks away from being able to survive had I gone into labor. I threw up again from the pain, but was given a pain killer and admitted for monitoring overnight. Thankfully, the pain never returned until three days before Nick was born, and I was released the following day to spend another week on strict bed rest (the nurse told me I needed to be "as lazy as a man on Thanksgiving.")

I spent the week of Thanksgiving home from work on bed rest again, which was bad timing because we were hosting my husband's side, so Cory literally cleaned our house, did 100% of the parenting, and cooked a Thanksgiving meal for our extended family himself. The Saturday after Thanksgiving, I passed a decent amount of dark brown blood, which I was told wasn't a terrible sign, because it wasn't "new" blood. I went to labor and delivery anyways, had another exam to check for dilation, and the doctor agreed that it was just old blood passing through and nothing to worry about, so I went home as soon as my exam was completed.

I went back to work the Monday after Thanksgiving, and, aside from having light spotting every day, things were normal for the next two weeks, until the second Scariest Week of My Life happened in December. In the weeks to come, I would worry that the pain I felt that Friday would return, but, probably because my doctors were still optimistic that things would work out okay, I didn't dwell on what was happening much. I had lessons to plan, presents to buy, and Christmas traditions to carry out, and, since the baby we had now named Nicholas seemed to be totally fine, I assumed everything would work out okay in the end.

Eight Month Update!

It has been awhile since I did a monthly update for Nick, so here is a quick summary of how my little guy is doing at eight months old (six months adjusted), along with an update on some advocacy work I've been doing:

Weight:
At the doctor this week, Nick weighed just over 19 pounds. Between his chubby cheeks and all the rolls in his thighs, he reminds me a lot of the Michelin man these days :) He wears size three diapers and 9 month clothing.

Eating:
As hard as it is to believe given how chunky he is, Nick is struggling a bit with eating solid food. I probably introduced solids too early, since he is only now six months old based on his adjusted age, but he has been eating solids for about two months now and still struggles with eating from a spoon. When I place the spoon in his mouth, he will push the spoon out with his tongue, and then suck the food from the spoon like it's his bottle. I remember my other children doing the same thing with their tongue the first two or three times they ate from a spoon when I fed them solids, but Nick is still having a hard time getting used to the spoon two months later. I know Nick is getting all the nutrients he needs from his formula, so I'm not pressing solids too hard. He drinks 6 ounces of his formula every three hours or so, and I give him one serving of pureed fruit and vegetables a day.

Milestones:
Nick's first tooth came in this month! He has gotten good at rolling both ways, and likes to roll across the room and find things to chew on. I am getting better at accepting that Nick will reach his milestones when he is ready, and, even though it's hard not to compare him to my older children, who always hit their developmental milestones ahead of schedule, I am doing a better job of remembering that Nick will start sitting up and crawling with time. It does worry me that he doesn't babble at all (and by that I mean no "mamas" or "dadas,") and it's hard to imagine him ever doing so. But, I remember a few months ago when I couldn't imagine him smiling, and he smiles whenever he sees me now, so I know it will come with time.

Coming Up:
I am so excited to celebrate Nick's first Halloween and take him to the pumpkin patch and trick-or-treating…especially because all of his candy goes to me :) Between now and Christmas, we will have a lot of "anniversaries" to relive, which will be emotional, but I also have the opportunity to do a lot of advocacy work over the next few weeks.

Advocacy Work:
Through my fellowship with the March of Dimes, I had the chance to help launch of the Blanket Change campaign this past week to draw attention to the maternal mortality crisis in the US. Also, November is Prematurity Awareness Month, and I have the opportunity to participate in my state's Signature Chef Auction and dinner. Even though a lot of my work just involves sharing information on social media, it's empowering to do so and I become more and more passionate about maternal and child health every day.

High Risk Hope Indianapolis:
As I have shared on my blog and Instagram account before, for months now, I have been trying to find a way to support women in my community with a child in the NICU. Over the summer, I discovered the amazing nonprofit, High Risk Hope, which is based in Tampa but is active in hospital across the country. High Risk Hope provides Bed Rest Baskets for women on hospital bed rest that include different self-care items that a mom stuck in the hospital might need, like chapstick and a pedicure set, and NICU Napsacks for new moms with a baby in the NICU. The napsacks include a story book, milestone cards for pictures, etc. The point of HRH is simple: brighten a mom's day and let her know she isn't alone when going through a difficult and lonely time. I am so excited to be starting a branch of HRH in my hospital in Indianapolis. I plan to find different and more exciting ways to fundraise, but on Friday I started a Facebook fundraising page to introduce HRH Indianapolis to my friends and family, and we already raised $500. I am so excited and happy to bring this amazing program to my hospital, and to help women from my hometown going through something similar to me.

One Year Later

One year ago today, on Friday, October 6th, I experienced my first big bleed and the start of all my pregnancy complications. I was 11 weeks +5 days pregnant with Mr. Nick, and was having nasty first trimester side effects (lots of fatigue, LOTS of nausea, and a horrible aversion to coffee that would make me throw up on the spot if I smelled it brewing.)It had been an extra long week at school: I had parent/teacher conferences Wednesday and Thursday night after a full days of teaching, and it was also the week before fall break, so my third graders were extra rambunctious. By Friday night, I was ready to sit on the couch, in my yoga pants, with my feet up, and spend the following week resting and hopefully starting to feel a bit better.

I was doing just that-sitting on the couch in my yoga pants-and talking to my mom on the phone when I felt a pop-pop-pop in my lower left side, near where my ovaries are. It wasn't painful, like it would be in the future, and I didn't think anything of it until I felt a big WOOSH of blood. It was enough to bleed through my pants and onto my couch (though it stopped right away, and was more like a big gush than a continuous bleed.)

This was the first time I think my brain seemed to sense that something terrible might be happening, and I immediately went into survival mode. I calmly went upstairs to my room, changed pants, cleaned myself off, and called the after hours hotline at my OB's office. I remember explaining to the nurse that I suddenly lost a lot of blood, and she said it "could be nothing, but it also could be something," and that I needed to come to the Emergency Room right away.

While all this was going on, Cory was putting our then four-year-old and one-year-old to bed. I remember telling him that we needed to go to the hospital because I was having a miscarriage, so we called my parents to come to our house so we could drive to the ER together. As we drove to the hospital, I remember being so sure I was losing Nick. What else would cause so much bleeding? It still gives me chills to think about how I prayed that God would spare my baby anyways, and I remember thinking to myself how I would explain a miscarriage to Annabelle. Even though I was only 11 weeks pregnant, Nick was very real to Annabelle and already very much a part of our family.

When we got to the ER, I remember whispering to the lady at the front desk that I was 11 weeks pregnant and had started bleeding (because I was still in the first trimester, I would stay at the ER, while in the future I would be sent to Labor and Delivery.) I was taken back to ER, and all my vital signs and health information was taken. Next, a nurse came with a portable ultrasound machine. She explained that she was an ER nurse-not a labor and delivery nurse-and the point of the ultrasound was just to confirm a heartbeat. I remember bracing myself as the ultrasound began, and was stunned when it revealed a perfectly healthy 11-week-old fetus. Nick was totally fine. A second nurse then did a cervical exam to check for dilation (which would have been another sign of a miscarriage,)but that too was normal. An OB then came to talk with us, who explained that sometimes during pregnancy, especially in the first trimester, women will have bleeding, but it doesn't necessarily mean anything. I remember thinking there was no way she was right, and that there had to be a reason I had suddenly bled so much. I was allowed to leave the hospital, and was told to call my physician on Monday to see if he would want to see me. When I called the following Monday, the receptionist said my OB didn't need to see me unless the bleeding continued, or if I experienced any cramping. Since the big gush of blood Friday night, I hadn't had any other bleeding, so everyone assumed it was a one time thing.

About a week later, I passed a blood clot that was about the size of a grape. After this, I had a more thorough ultrasound and a consultation with my primary obstetrician. This ultrasound revealed the pesky Subchorionic Hematoma that would cause so many problems throughout the next four months. At this time, my doctor didn't think anything of it. He explained that SCH's are relatively normal (according to my Google research, it is the most common cause of bleeding in the first trimester,) and they normally heal on their own, and are gone by the 20 week ultrasound. Usually. But, since SCH's do slightly increase the risk of miscarriage, my doctor recommended pelvic rest (no exercise, no heavy lifting, no sex, etc) until the 20 week ultrasound.

I still don't fully understand the link between the SCH and the placental abruption that would cause Nick's premature birth (which is so weird since it's had such a huge impact on my life,) but, over the course of the next four months, I would be admitted to the hospital five times, spend 11 weeks on bed rest, have 15 total ultrasounds, and make eight more separate trips to the hospital. It's hard to believe it has been a year since all of this started, and it's even harder to accept how different our lives could be if I had bled just a little bit more. It's definitely an emotional day, and I think I will spend some extra time cuddling my lucky little boy today.

Moving On, Part Two

I have been really frustrated lately about how hard it has been for me to move on with my life. Every morning when I wake up, I tell myself that I'm not going to think about the NICU today, that I'll concentrate on whatever is going on that day and force myself to push all the obsessive thinking out of my head. But still, no matter what I do, memories come creeping back into my thought patterns, and I can't help but dwell on the same.things.over.and.over.

The hardest part for me to accept is what an literal miracle it was that 1.Nick is alive, and 2. That I stayed pregnant long enough to give Nick an easy stay in the NICU and avoid the major complications of prematurity. I keep thinking to myself how easily Nick could have died so many different times, and maybe it sounds selfish or self centered, but I think coming so close to losing your child is a burden to carry in it's own right. I just don't know how I'm supposed to have gone through an experience like the NICU and then go back to teaching, or running errands, or going out with friends like I used to do. I'm worried the NICU changed me to the point where I can never go back to being my who I was one year ago.

But then, a large part of me feels called to work in the field of prematurity and high-risk pregnancies. I have applied to social work programs with the goal of becoming a perinatal social worker, and I am in the process of trying to starting a branch of the amazing nonprofit, High Risk Hope, at my hospital. Just yesterday, a girl I grew up with shared on Facebook how she delivered her baby eight weeks early do to complications of preeclampsia. I messaged her to tell her I had an idea of what she was going through, that I would be praying for her, and gave her my phone number in case she ever needed to talk. She thanked me for reaching out, and then asked me how I got through it. I remember so clearly that devastation and fear that comes when you first realize what it means to have a child in the NICU, and I hope that I made her feel a little more comforted. My point in sharing this is because I feel like a lot of good has come from my experience, and I can pay it forward in a way that benefits other preemie moms in my community. Then again, my husband thinks it's unhealthy to be doing so much related to the NICU (like writing this blog,) and maybe that's why I feel so stuck. I just don't know how to get back to normal and move past to everything that has happened this year.

Moving On

Today, I had a moment where I felt like I just couldn't do the NICU anymore. I think it's because today is NICU Nurse's Day, so my normal social media news feed was full of preemie baby pictures and (much deserved!) notes of gratitude for Nick's nurses that I am friends with. One of the reasons why I started an Instagram account to coincide with my blog was so that I could keep my NICU related accounts/activities separate from my "normal" social media, so I think seeing so much preemie talk on my personal Facebook made today a little more emotionally tiring (even if it was for the best cause!)

It's funny how our minds work. One of the things I am working on in therapy is the fact that I literally never stop thinking about my pregnancy and the NICU. I replay images, conversations, sensations, etc, on repeat all day in my head. It's like listening to the same song over and over again, except instead of a song, it's the same thoughts and memories over and over and over…and then the more I dwell on certain memories, the more anxious I become, and before long I'm totally wrapped up in my own head. Staying home with my kids this year makes it especially challenging, because on most days I have little to no adult interaction (besides my husband,) and, since I'm around Nick 24/7, it's so hard to stop myself from thinking about his birth.

I also know I'm not helping myself by choosing to write this blog and run this account, because I'm willingly bringing myself back to the NICU every day. I could just delete this account, erase my blog, stop writing, and totally block out everything that reminds me of our time in the hospital. On some days I think this would help-to make a clean break and just acknowledge that I had a difficult pregnancy, and that Nick was born 10 weeks prematurely and spent eight weeks in the NICU, and leave it at that. It was just something that happened to us, and there's no reason to keep dwelling and dwelling and talking and writing about it. I have to eventually get over it, and it's tempting just to make up my mind that the NICU is in the past and close the emotional door on it completely. Thousands of babies around the world get admitted to the NICU every year, and we certainly aren't unique. And yet.

There's memories that pop into my head, like the one I was thinking of today: On the day after Nick was born, I remember asking one of his nurses when I would be able to take him home. She responded that he was at least five weeks away from being able to eat on his own, so it would be a minimum of five weeks until he could leave, but I should plan on Nick staying until his due date, ten weeks away. I remember not being able to breathe and thinking that was the worst thing anyone has ever said to me. It's memories like that, that are still so fresh and still make me cry, that I feel like I need to talk about. I've also always been a big believer in the idea that everything we experience in life is for a reason. I've thought about doing this-writing and advocating for NICU families-for a living, and am in the process of applying to some graduate programs in social work to potentially pursue a career as a perinatal social worker. Starting a brand new career would be a good explanation as to why I had a pregnancy complication that only 1% of all pregnant women experience. It's a lot easier to try and read meaning into a totally random, out of the blue health complication than to accept that the NICU was just something that happened and move on with my life. But still, it's me willingly inserting myself back into the NICU world, and I don't know if I could handle living the NICU day in and day out for the rest of my professional career.

I'm sorry this post is rambling, but that's how I feel my mind is these days. I keep telling my husband that I'm having an almost-30-year-old life crisis, but it's true. I went through this incredible, life changing experience less than a year ago, and I don't know how to just put it all in my pocket and move on.

Dealing With Intrusive Thoughts

The most frustrating part of recovering from my high-risk pregnancy and our experience in the NICU has been that I can't stop thinking about it. Literally. When I wake up in the morning, I tell myself that I'm not going to think about the NICU today, that I will catch myself when my brain starts to wander and change my thinking to focus on something more productive, and I will take measures to help myself move past the NICU (such as exercise, cleaning, new projects, etc.) But, it's hard. During the day when I am minding my own business, I will suddenly start thinking about the moments before my c-section. I hate that my mind has been doing this, because 1.I am so tired of thinking the same thoughts again and again, 2. It gives me anxiety to relive all these traumatic events, and 3. I know I need and want to move on with my life

I replay the same thing over and over in my mind-ultrasounds, appointments when we found out bad news, waking up and finding out I had had another bleed, the c-section, etc, and it's exhausting and frustrating and harder to stop thinking about than it might seem. At first, I didn't realize how obsessed with my pregnancy I had become, and it wasn't until recently (see my post about Christmas!) that thinking about these thoughts started giving me anxiety. Now that it is getting closer to the anniversary of my first bleed, I know the anxiety around these days it only going to increase. I have started training for a half marathon, doing yoga when I can, I applied to grad school, have started volunteering at my daughter's school, and am considering finding a maternity leave position for after Christmas,all in part because they are activities that will keep my brain occupied. I'm one of those people that has an obsessive need to stay busy and I like having a full schedule, and it's almost a relief to have something to focus on because it gives my brain a break from thinking about my pregnancy.

I have written a lot about guilt on my blog, and experiencing these obsessive and intrusive thoughts is one more thing for me to feel guilty about, which brings about it's own set of negative feelings. I know it is a legitimate miracle that Nick survived my pregnancy, and that I was able to hang in there until 30 weeks, when he was no longer at risk for the serious consequences of prematurity. I know we are unbelievably lucky that his stay in the NICU was so smooth, that he is healthy and thriving, and that whenever it seems like we are encountering a setback (like his gastro problems or temporary developmental delays,) he has always been able to overcome it. I am almost 30, and the older I get, the more aware I am of women who have lost a child, either through stillbirth or miscarriage, women who have been trying for years to conceive on their own, and women who have babies born weeks earlier than Nick. Compared to what so many women go through, I feel embarrassed to be having such a hard time emotionally recovering from my pregnancy. As crazy and horrible as my pregnancy was with Nick, it ultimately ended in a healthy baby, so what do I really have to complain about?

I am a big believer in the idea that things happen for a reason. I believe the hardships we encounter in life are all part of a greater plan, and I absolutely believe everything that has happened throughout the past year was meant to happen, for whatever the reason. I started this blog originally to share updates with my family when Nick was still in the hospital, but it morphed into a platform to share my writing with a large audience, which led to four of my articles being published. I became active in the March of Dimes because I wanted to help other moms like me, and led to me having the opportunity to advocate for preemie families on Capitol Hill. All of these "successes" have made me even more confident that my pregnancy happened for a reason, but now I'm worried that everything that has come from my pregnancy is a product of my obsession/preoccupation/PTSD, which makes everything I am doing unhealthy in a way. I am trying to take a step back from the NICU emotionally, but it is a challenge that I am trying to find a way to work through. Any tips or advice is appreciated!

My Weekend in the NICU

I feel embarrassed and kind of silly to share how difficult my weekend was, because I know how lucky Nick and I are, and I know that so many other good people have been through much more traumatic pregnancies/NICU experiences than I and don't have these symptoms. I'm not sharing this for pity or because I feel sorry for myself, but because I think it's important to draw attention to the possible long term consequences of high risk pregnancies.

As I shared on an Instagram post, my sister was induced Thursday night after a totally normal, complication free pregnancy at the same hospital Nick and I were in. Her contractions started in earnest Friday morning, so that afternoon I brought my brother-in-law lunch. At our hospital, the maternal-fetal medicine office is on the main floor, followed by labor and delivery on the second, postpartum on third, and the NICU on the fourth floor. So, all my memories of my time with Nick are in one place. When I pulled off the main road and into the parking lot like I have done so many times before, it felt like all the air went out in my car and I was suddenly breathing through a straw. I had planned on going to the second floor to bring my BIL his food so I could see my sister too, but I chickened out and asked him to meet me in the lobby. It was embarrassing to say I wasn't ready to go into the actual hospital yet, but the anxiety came on so quickly that I didn't know what would happen and didn't want to risk making a scene.

That night, my sister was still in labor (she ended up being in labor for 30+ hours!) so I decided to suck it up and go to labor and delivery to wait with my family. Going to the second floor wasn't as difficult as I was expecting it to be, even though my chest started hurting when I saw our high risk doctor's office. Seeing my sister was kind of an out of body experience, especially when I saw the robe and yellow socks folded in the corner of the room. As soon as I would get admitted to the hospital, I would change out of my clothes and into the robe and socks, and it was what I was wearing during my c-section. It was a strong memory, but it wasn't overwhelming or even that upsetting.

My nephew was born early Saturday morning, and, unfortunately, had some minor breathing problems at birth. He was admitted to the NICU on CPAP, and is still there tonight (though he is off CPAP and doing great.)When I found out that he was in the NICU, I started panicking. I kept thinking about my sister having to leave the hospital without her baby like I did, and the thought made me so sad that I started crying, and soon my chest started burning (it felt like when you go running or workout when it's so cold outside that it makes your lungs hurt.) I had a panic attack, and it is embarrassing for me to admit that I lost control after something that isn't too big of a deal, especially since we all knew my nephew was basically fine and would only need to be in the NICU for monitoring for a short time.

I thought I wouldn't be able to handle seeing preemies again and going back to the NICU, so I decided just to go to the hospital to see my sister, but not actually go inside the NICU. When I got to the hospital, I met up with one of our favorite NICU nurses. It was so good to see her again, and it made me remember how blessed Nick and I were to meet such wonderful people and receive such excellent care. Talking to our nurse helped me relax, so I decided to actually go and see my nephew (he ended up being in the same room Nick was in for the second half of his stay.) On Saturday, it wasn't too hard to be in the NICU, in part because my sister and brother in law were so ecstatic about their new baby, and in part because my nephew is over 8 pounds, and, other than the CPAP, looks like a normal, healthy newborn and not an itty bitty preemie.

Since yesterday went so well, I decided to go back to the NICU today to spend more time with my sister and nephew. Today was much harder, because the curtains were open in the rooms leading to my nephews', and seeing the teeny tiny preemies made my heart hurt for their parents. Seeing other babies as tiny as Nick was upsetting, and I hate the thought that their moms are currently going through everything I did. It brought back so many memories of passing these rooms on my way to see Nick, rocking him in (literally) the same chair my sister was sitting in, and hearing alarms and the beep of feeding tubes. It was a lot to relive, and when I left the hospital I spent some time crying in my car.

When I was driving home, I had a surreal, out of body experience: I was driving down the same road to my house like I always do, but instead of it being in the middle of a sunny day, it was dark like the middle of the night. I was seeing the road in the darkness like I had so many times when I would drive to the hospital in the early morning and late at night.It was the same road, but I was driving at night. I don't know how else to explain it, and I know my description doesn't make any sense, but it was really weird and scary, and it made my head hurt afterwards.

In my defense, no one was expecting my nephew to be in the NICU, and, even though I was trying my best to be prepared to return to labor and delivery, I wasn't expecting to go back to the NICU. I have been trying to stop myself when I start to obsess about my experience and refocus my thoughts like my therapist suggested, but I feel like going back to the hospital was a huge setback in terms of trying to stop reliving my pregnancy complications. On the other hand, I feel like being back in the same room and hallways brought the issues I'm struggling with to the surface and reminded me how important it is that I take the time to work through this baggage.

I feel like it would have been a normal reaction to my pregnancy complications if I was having panic attacks and flashbacks last winter when my pregnancy looked bleak, but instead, I think I shut down emotionally, and that explains why everything caught up to me this weekend. I'm just now starting to process everything, six months later. It's easy to convince myself that I don't have any reason to ever go back to the NICU, so I don't need to worry about reliving everything like I did this weekend, but I know I need to face these issues head on to truly recover.

My First Therapy Appointment

Nick is halfway to his first birthday today! It's hard to believe he is six months old already, but at the same time, he has changed my life so much that it's surprising he has only been here six months. I feel as though both of us turned a corner this month; for Nick, it was catching up to his fellow February babies in height and weight, and testing out of physical therapy. For me, it was acknowledging the toll my pregnancy has taken on me emotionally, which led to me starting therapy.

I think about my pregnancy with Nick constantly. It's like my brain is on a loop and replays three particular scenes on repeat: the times I would wake up to discover I had started bleeding, the scary appointment with my MFM doctor the day before Nick was born that still gives me chills, and then the hours leading up to my c-section. I think about our doctors and nurses literally every day, but at first, I didn't really see this as a bad thing. A lot of good has come from my obsession with my pregnancy and the NICU: I have been able to write and publish four articles that have (hopefully) had a positive impact on other readers, I was selected to participate in a fellowship through the March of Dimes that gave me the opportunity to advocate on Capitol Hill, and, recently, I have started mentoring other new NICU moms through a program called Hand to Hold. I didn't see my constant thinking about my pregnancy as a problem (or even consciously realize I was doing it,) until replaying these memories began to give me anxiety.

As I mentioned briefly in an earlier Instagram post, I went to Hobby Lobby last week to pick up some supplies for a project I was working on. Hobby Lobby had all of their fall, Halloween, Thanksgiving, and even Christmas decorations displayed in the aisles already. Usually, I love when pumpkins and Christmas trees start appearing in stores, but seeing Christmas ornaments and ceramic Thanksgiving turkeys made my chest start to feel tight (and still does as I write this.) It was around this time of year last year that we learned we were expecting Nick, and it seemed every complication I had corresponded with a season: we announced our pregnancy on social media with a picture of pumpkins that said we were "adding another pumpkin to our patch." I had my first bleed the night Fall Break started for me when I was still teaching, and I was hospitalized the week before Thanksgiving and two weeks before Christmas, and Nick was born on Valentine's Day. I'm worried that these holidays will now always bring back bad memories of my pregnancy with Nick, especially Christmas: my mother-in-law sent me a tiny Christmas tree that stood on the bedside table next to my hospital bed in December, and I remember lying in the hospital listening to Christmas music to try and cheer myself up. I preferred to spend my time on bed rest in our living room so I could look at the lights on our Christmas tree, and I would keep myself busy by watching Christmas movies and shopping for presents on my laptop. Christmas is over four months away, but just writing this makes me feel so sad and makes my stomach hurt. Even something as simple as smelling the coffee I used to drink on my way to the NICU, or hearing a song that came out around the time Nick was born, makes me anxious. Halloween-Christmas is my absolute favorite time of year, so, since I don't want to be reliving and feeling the anxiety of the 2017 holiday season all this year, I decided to find a therapist. (I had an eating disorder all throughout high school and would occasionally relapse during college, so I understand how powerful and worthwhile it is to work with a therapist. I lost a lot because of my eating disorder, so I take my mental health seriously and don't hesitate to reach out if I feel it is needed.)

I have only met with my therapist once so far, and my first appointment was mostly giving him the rundown on what my pregnancy and the NICU was like (which made him remark that Nick is "quite the miracle.") It was honestly nice just to talk to someone other than my husband, and my therapist is (thankfully) very empathetic and a good listener. I felt kind of silly going to a therapist because Nick 1. Survived, and 2. Is doing so well now, so it was so nice to hear him acknowledge that my pregnancy was traumatic, and that it is not something anyone would be able to get over quickly. He explained that often when people are exposed to high levels of stress (like the high probability of losing a baby,) people's brains can "shut down," and one can go in to survival mode. I think that explains why I was never as scared as I should have been with Nick. I always thought it was because I had sub plans to work on and child care to coordinate, and I was too busy to really dwell on how bad my situation was. If I were to get pregnant again and have the same complications, I would be terrified, but I think my considerably laid back approach to bed rest and my hospitalizations was actually my brain in denial. My therapist said that after going through all of that, it is no wonder that I am having trouble "moving on," and it is important that I am able to stop myself from thinking the repetitive thoughts when they pop into my brain, and that I find productive ways to stay busy.

Since I saw him, I have been working hard to keep my mind busy, but it is hard to do so since I'm not working this year and I am literally with Nick 24/7, 7 days a week…and whenever I hold Nick I think about how lucky we are, which makes me think about how many moms like me don't have a baby to hold, which makes me feel guilty, which makes me think about the NICU, and then my c-section, and then the abruption, and then all the scary bleeds and ultrasounds that led up to the big bleed. So, I have started trying to read more to give myself something to think about, and I applied to a grad school program as well. I am proud of myself for taking steps to help myself heal, and I am excited to continue my appointments and truly recover from the past year.

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.

Follow Up Appointment and Developmental Delays

Yesterday, my sweet baby and I went back to the NICU for our two month follow up appointment. At the appointment, Nick was assessed by a physical therapist and occupational therapist to get a true sense of how he is fairing when it comes to his development (also, all the tests they ran were based on his adjusted age of two months.) His PT and OT unfortunately weren't the same ones who worked with him in the NICU (I'm realizing now that I have never given his therapy team the credit they deserve. They were experts on every single detail of his development, and they will always have a special place in my heart as the ones who taught me how to feed my baby.) When we first got to the appointment, I shared my concerns about Nick's emotional development. I explained that he never coos, never reacts to noise, hardly ever smiles, and seems indifferent to me (they asked if he ever curls up to snuggle me when I hold him. I hadn't realized it until they asked but he never has.) I could tell immediately that Nick wasn't doing well on any of the tests they were running. They had a variety of noise making toys that they used to try and get Nick to turn his head to the left, follow with his eyes, etc, but Nick just laid there, indifferent to everything they were doing. The PT was surprised that Nick can roll over from front to back, and that he does such a good job pushing up on his forearms during tummy time. But that was the extent of the good news. The therapists evaluated Nick in four different categories, and explained that he is eating and sleeping like a three month old (so a month better than he should be doing,)but, with everything else, he is, developmentally, a one month old. His social/emotional category was his lowest (big shocker there), and his development is only that of a two week old. The therapists think that the root of his problems stem from the fact that he favors his right side so much. It's obvious that he prefers to look to the right,but I thought that wasn't too big of a deal compared to his emotional problems. They explained that since he is always looking to the right, he is basically cut off from half of the world, so it's natural that he would be slower to track objects with his eyes or react to noise. So, we were referred to the First Steps program, which is when a team of physical therapists will come to our house to work one on one with Nick. Sometime soon, a PT from First Steps will do their own assessment of Nick and develop a therapy plan, which will likely consist of either weekly or every other week physical therapy appointments. I was taught how to do stretches with Nick that I will do every time I change his diaper. They are hoping that once he stops favoring his right side so much, the emotional aspect of his development will improve as well. We also ran into his primary neonatologist who I adore, who said that his problems are probably related to him being breach, or from the positioning of the placenta (again with the damn placenta!) Honestly, I wasn't expecting the therapists to find anything wrong with Nick. Maybe he was a little bit behind where he needed to be, but I was expecting that they would tell me that Nick will just develop a little differently than his peers, but that there was nothing to really worry about. In the NICU, every time it seemed like Nick was potentially facing a setback (like when they initially thought he would need surgery to fix his hydrocele, or all the gastro problems he had after leaving the hospital,) the issue always resolved itself. The therapists told me that sometimes, simply doing the neck stretches after I change him is enough to get some babies back on track, and that many times, when babies go back to the NICU for their six month follow up appointment, all their issues have disappeared and you would never guess that they were once delayed. But still. It makes me so sad for him. He's such a sweet little boy, and it breaks my heart a little to think that I never know if he's content or happy. He literally just exists, and I think that if I were to leave him in his basinette all day he would be fine with it. It makes me so worried that there is something going on that is more serious than a developmental delay. I have already heard great reviews of First Steps, but once again, we are in the position of having to depend completely on strangers to take care of our baby. Also, thank you all so much for your sweet words from my post yesterday. I am so thankful for our village.

Moving Past the NICU

I read a very interesting article yesterday about the rate of Post Traumatic Stress Disorder in NICU parents. The article explained that(though this isn't intended to make light of these situations), unlike a car accident or rape,the NICU is a constant, continual trauma, and isn't necessarily centered on one event. When parents have a child born so sick or so prematurely that the possibility of their baby surviving is slim, every day brings more bad news, surgeries, tests, etc, and the stress and fear never completely lets up. Coupled with the alarms and noises of the NICU that the author describes as a war zone in it's own right, it is easy to see how a significant mental illness can develop. My experience was far from that extreme, and that is 100% because, once he was born, Nick's survival was never in question. Yes, it was hard to leave him behind at night, but I think complaining about how hard it is to leave a healthy, thriving preemie behind in the NICU is the preemie version of a #firstworldproblem. I do not, and never have, had anything to complain about.But still. I am finding it hard to move past the NICU. I know this is my fault, because, by writing this blog, I am, in a way, dwelling on the fact that Nick is a preemie and not a "normal" baby. By running a corresponding Instagram account, I have "met" many other preemie and micro preemie parents. Their stories about what their families have been through and everything their child has had to overcome is inspiring and unbelievable at times.Since their babies are almost always born weeks earlier than Nick, it makes me want to stop writing this blog, because I feel Nick's story is too easy and straightforward to be lumped in the same category as their child (see my post on the March for Babies for more on this feeling.)Finally-and this is probably something I should change in the interest of my mental health-my Instagram account has the has tag #placentalabruption in the little bio part of your profile. This means my newsfeed features other women sharing that same hashtag, which is often used to share a birth story in which their baby either died from the abruption, or the abruption caused their baby to be born when their sweet baby was too premature to survive. Their pain is palpable and raw, and their posts are as beautiful as they are godawful and sad. Today I cam across a post of a woman who had a normal, drama free pregnancy, only to loose her full term daughter to a placental abruption. She shared how she scattered her daughter's ashes at sea, and it was so beautiful and awful, and it's hard to believe an Instagram post could be so powerful. Posts like these always make me cry, because that was us. Nick and I were just like her, except I was in the hospital when I abrupted instead of at home, like I so easily could have been. By making the decision to keep me in the hospital until I delivered, my MFM doctor saved my baby's life. I think about our doctors and nurses and how lucky I am every.single.day. Over the past four months, helping NICU moms and women with high risk pregnancies have become a passion of mine.Two weeks ago, I was accepted into a fellowship program through the March of Dimes called the Gretchen Carlson Advocacy Fellowship.I found out about it through the March of Dimes' Facebook page, and I wanted it, badly. On Wednesday, we had our first webinar, which gave me and the 19 other fellows an overview of what to expect throughout the next year. The program will begin with a conference in Washington DC next month, where we will meet with leadership of the March of Dimes to learn about the Preemie Reauthorization Bill. The following day, we will meet with our state senators and representatives to advocate for this bill on behalf of the March of Dimes. We will be trained via webinars about how to do similar advocacy work at the state level throughout the year. It's an incredible opportunity, and I feel very fortunate to have been chosen. The women I will be working with are incredible (the two other women from Indiana include a professor with a phd who is currently conducting research on women's reproductive patterns in Italy, and the other is a pediatrician who oversees her hospital's newborn nursery. RIGHT?) The accomplishments of these women are inspiring and intimidating, but I am proud to be representing "normal" NICU moms. I believe our voice is powerful, and I hope I can adequately convey everything I have written about in my blog. A year ago, I had never heard of a placental abruption and I only distantly knew of parents who had a child in the NICU, and next month I will be on Capitol Hill speaking on behalf of the March of Dimes. I absolutely believe things happen for a reason, and I believe I have a calling to work with this cause. But still, it keeps me preoccupied with prematurity, which brings me back to obsessing about how lucky Nick and I are. As excited and motivated as I am to be working with the March of Dimes, I believe my passion and calling is to work directly with NICU moms, preferably in the hospital and NICU we were in. I have volunteered for a program called Sidelines, which provides peer support for women on longterm bed rest. I am so excited to be a part of this organization, because, despite all the nonprofits and programs out there that work with NICU families, their is hardly anything that exclusively deals with women on bed rest. I will be matched with a woman that has similar complications as I did, and I will email and call her to provide support until she delivers. I cannot wait to begin working with Sidelines, but still, I'm stuck in preemie land again. Finally, when it comes to dealing with my actual preemie, it is hard to see Nick as a "normal" baby. It is difficult to do this because of his adjusted age, which will last until he is two, but I feel he will always have an star by his name. I feel he will always be the bed rest baby, the placental abruption baby, the NICU baby. On Tuesday, we head back to the NICU for a follow up clinic to assess his milestones. Hopefully, Nick will pass everything with flying colors, and hopefully that will help me to see that he is a normal, healthy baby. But still.

Father’s Day in the NICU

Tomorrow is Father’s Day,and I have read a lot about how it’s important to acknowledge how the nicu and a high risk pregnancy impacts a father. Even though I think it’s hard to critique how one handles the nicu because, in spite of the warnings from my doctors about the likelihood of Nick coming prematurely, I don’t think it’s really possible to be prepared for everything the nicu entails. During my time on bed rest, I know the stress of having to be both mom and dad, on top of having a job that requires frequent out of state travel, took its toll on Cory. We depended on the help of our parents to help care for our kids and run our house so that Cory would have time to work, especially when I was in the hospital. In addition to picking our kids up after school so that Cory could keep working, doing our laundry, cooking meals for us, etc, my parents would frequently pick up Annabelle and Graham for dinner so that Cory could come to the hospital to be with me (and, equally as important, bring me food from the outside. The only food I liked from the hospital was French toast, so I ate that whenever Cory couldn’t smuggle me in something a tad more edible.) With everything Cory was dealing with, and with my isolation in the hospital, this was the time when we really got to talk. Most of the time, we obsessed about when I would be able to come home (in December, it was when the bleeding would stop, and for the two days I was in the hospital in February before Nick was born, it was how long I would last until I went into labor.) We never really talked about how risky my pregnancy was, mostly because I don’t think I ever really processed how bleak it looked at times. Usually, my husband would stress about work, which I think was his way of handling the stress of balancing everything on his own and having me in the hospital. It was hard for me to help him, because there was nothing anyone could do to help my situation or predict how everything would turn out. Early in the morning the day Nick was born, I called my husband to tell him my bleeding was increasing and that I thought today would be the day Nick would be born. As soon as he dropped our kids at school, which was when I was signing the c section consent form and being told to stop eating and drinking, just in case. When the doctor decided to do the c section, I was taken back to the OR to be prepped to surgery, and Cory was kept in a different room until right before the procedure began. For the first ten minutes or so of the surgery before Nick was born, Cory and I were completely silent. I, at least, was scared to death, and it was obviously such a different birthing experience than it was for our other two. With Annabelle and Graham, Cory and I were both laughing and talking during their births and the mood was so light. After Nick was born and was being assessed by the nicu team, Cory was able to see him for the first time and take pictures of him, and I remember asking how little he was. I held Nick for the first time later that night, but, because he was busy with our kids, Cory didn’t actually hold him until the following night. One of the things that I did poorly in hindsight was to take into account how Nick’s prematurity affected Cory. In the immediate days after his birth, I had a one track mind. I was his mother, and Nick needed me. Cory tried to calm me down and convince me that I didn’t need to be with him at all times, but I was as obsessed with being near him as I was devestated that Nick wasn’t at home with me. Cory understood that, so he frequently let me go to the hospital while he stayed back with the kids. When he wasn’t traveling, I would go to see Nick in the morning, be home in time to take our kids to school, go back as often as I could during the day, and be back again after our kids went to sleep. This meant Cory would need to stay back with our kids, and, because of work and travel, he would sometimes go days without seeing Nick. It was so selfish of me to not offer to be home with our kids more so that Cory could go to the hospital. I would always offer to stay back, but Cory and I both knew it wasn’t heartfelt. Far longer than I should have, I didn’t care how badly any other family member wanted to be with Nick. I was his mother, and I had to be with him. End of story. I knew Cory wasn’t having as hard of a time with the nicu as I was, so I assumed he was ok with letting me have more time with Nick, but I didn’t ask. Usually Cory and I are very honest and open with each other, and I would have relented if he would have demanded to see Nick more, but since he knew how much I was hurting, he let it be. He missed out on a lot of early days with Nick as a newborn because of me, but, in truth he didn’t have the obsession of being there like I did. I thought that meant he was ok with it, but I should have asked.

Four Month Update!

Nicholas is four months old today, which brings his adjusted age up to two months. I know I’m too preoccupied with milestones and his adjusted age, and I need to take a step back and appreciate how far Nick has come in four months and that he really is a thriving, healthy baby. For everything other than his emotional development, Nick is basically a perfect two month old:

Weight
At his last appointment, Nick weighed just under 12 pounds. Strangers still make comments about how little he is (I always tell them his true age when they ask instead of his adjusted age), but his cheeks, thighs and arms have definitely filled out and are nice and plump now 😊. He wears 3 month clothes and size 3 diapers.

Eating
His huge weight gain he experienced last month is probably due to a growth spurt and the fact that he loves to eat. I seriously think if I kept refilling his bottle he would never stop eating. He will go about 5-6 hours at night without needing a bottle, but he is almost always ready to eat 5 ounces every 3 hours. I started adding baby cereal to Graham’s formula at four months, but Nick is a long way from having any type of solid foods introduced. Solids will be introduced based on Nick’s adjusted age, and his neck control needs to get much better before I would begin to think about solids with Nick. It’s so hard to believe Graham could sit up in a booster seat, let alone eat mashed up cereal, when he was Nick’s age. Nick is just so far away from that, but I know that’s the whole point of adjusted age. I wouldn’t dream of feeding a two month old cereal, which is just more evidence I need to stop comparing my boys and let Nick develop at his own pace.

Milestones
Rolling over from front to back was Nick’s big victory for the month! It’s surprising that he rolls over so easily because he still struggles to support the weight of his head a bit, but he does a good job at tummy time and propping himself up with his arms. If you read my last post, then you know I am still waiting on coos, smiles, increased eye contact, and for his personality to show through a bit more.

Coming Up
This month, Nick will get to celebrate his first holiday at home with us 🇺🇸 (I am on a mission to find my boys matching Fourth of July outfits 😊)He will also be heading back to the NICU for a follow up appointment with the  therapists who took care of him while he was in the hospital. At this appointment, the PT’s will do a thorough evaluation of where he stands development wise, which I’m sure will help put my mind at ease. ❤️

March for Babies

Today my family participated in our first March for Babies! I started a Facebook fundraiser a few weeks ago to raise money (all proceeds go to the March of Dimes to help fund prematurity research), but, since this was our first year participating in the event, I wasn't sure what to expect and I definitely wasn't prepared for how emotional it ended up being. 

To be honest, the March for Babies was really sad and actually really hard to be apart of. The main reason I feel this way was because it seemed like the overwhelming number of teams participating in the march were walking in honor of a child they lost do to either extreme prematurity or disease. For example, the team we walked next to the majority of the three mile walk were walking in memory of their son who lived for a day before passing away from Trisomy 18 this past November. They all had matching t-shirts that listed their relationship to the baby, such as grandparent, mother, cousin, etc. There were many other teams/families with similar stories: they had children born far earlier than Nick's 30 weeks weighing between 1-2 pounds (so half the size of Nick.) Some families shared on their signs or t-shirts why their child was born so early (such as preeclampsia or IUGR with multiples,) but most simply had matching t-shirts dedicated to the baby they lost with sayings like, "Held briefly in our arms but forever in our hearts." Along the walk route, there were signs with pictures of babies who passed away with descriptions of their short lives and messages of love from their parents. 

I guess I just wasn't expecting it to be so heavy. Since I was marching in honor of my preemie, I guess I was expecting the focus to be more on prematurity awareness and the March of Dimes' campaign to help women with high risk pregnancies. I don't mean to say it wasn't a beautiful event-I'm sure honoring the memory of their sweet baby among other families who have experienced a similar loss is very therapeutic, and an important, visible reminder as to why raising money for organizations like the March of Dimes is so important. 

I spent the majority of the day feeling extreme post-NICU guilt. I was walking with a healthy, now 11 pound baby who never suffered or experienced any serious setbacks during his time in the NICU. I didn't see any families who had babies born as "late" as Nick, or over 30 weeks at all. It gave me the feeling that I didn't belong, that I didn't have the right to lump myself in the same category as a mother whose child was born at 24 weeks and weighed barely a pound. We might have both had our baby in the NICU, but our experiences were far from the same. I can imagine a justifiable eye roll on their part if they were to read my blog and see that the only difficulties Nick experienced in his 53 days in the NICU were a swollen testicle and constipation. I have been trying to come up with a way to give back to the doctors and nurses who cared for Nick and I, and to find a  way to help moms like me, but I keep coming back to the same feelings of guilt, like I don't have the right to speak on behalf of NICU moms when a "tough" NICU day for Nick would have been a walk in the park for them. Maybe it's immaturity or selfishness on my part, and I think I will probably participate again next year because this cause has become such a passion of mine, I will just be better prepared for the sadness and hopefully my post-NICU will be a bit better by then.