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.