The Worst Thanksgiving Ever

Picture it, Thanksgiving 2016. Two NICUs, a burnt brunch, and McDonald’s for dinner. By far the worst Thanksgiving I had personally experienced.

Thursday, Nov. 24, 2016, was our first Thanksgiving as a family of six. Our youngest two children — twins — were 6 weeks old. The day started like many other years, I was in the kitchen preparing food. And we watched the Macy’s Thanksgiving Day Parade on TV.

However, this year there would be no large meal. Our normal large family dinner was pushed  few days back to accommodate schedules and in-laws. My husband, our then 7- and 3-year-olds, and I had traditional side dishes for brunch. It was our small attempt at providing normalcy in an abnormal year. It was a poor attempt at that, it was burned. I burned because I was cooking and pumping, but had not mastered the ability to pump milk unplugged and hands free. It was more like cook, go sit near a plug for 20 to 30 minutes, and repeat. We ate burnt stuffing and grean bean casserole, (were there sweet potatoes?). Honestly, I don’t remember too much of what was on the menu. I remember the stuffing because it is my all-time favorite side, but mostly I remember it was all burnt and there was a general sense of disappointment from everyone. 

We ate a charred brunch with no main course because our twins were in the NICU. Actually at this point they were in two separate NICUs about 30 minutes apart. We wanted to spend as much time together as we could for the holiday. NICU number two had set visiting hours for siblings, it was a 2-hour block of time in the middle of the day. So we built our day around that fixed point.

After eating what we could of the sad brunch, we packed up two children, a lunch box of milk, and drove an hour north to NICU number 1 to see our youngest daughter. We had laminated visitor passes that allowed us to bypass the normal visitor pass process. We walked to the NICU, we scrubbed our hands, disinfected our phones, scrubbed the big kids’ hands, and then we scrubbed our hands again. We walked back to her hallway and her room. I deposited labeled milk in her refrigerator. We talked with doctors and nurses to get updates on how she was doing. We stayed a short while. Kids get very restless in the NICU and on this day, we had a schedule to keep.

We left our daughter and headed 30 minutes west to NICU number two to see our youngest son. We parked in the garage and we walked into the hospital. We paused to note the familiar art that decorates the children’s hospital. We stopped to get our visitor passes and we headed up to the NICU. We waited in the family lounge until sibling visitation began. Once it started, we all scrubbed in and then walked to our son’s hallway and down to his room. We said hello to his neighbors, who turned into wonderful friends. Toward the end of the sibling hours, a grandmother met us in the family lounge and took the big kids to her house for a sleepover.

After the big kids were off, we visited our youngest son a little while longer. Then we made a return visit to our youngest daughter to spend more time with her.

At the end of the day, we drove an hour home, exhausted and hungry. We pulled into a McDonald’s drive thru and got dinner. Until that day, I had never understood why places like McDonald’s stay open on major holidays. I no longer wonder, but I remain grateful  businesses like that stay open.

To date, Thanksgiving 2016 is the worst I’ve ever had. No other bad Thanksgiving has ever been as hard as that year was.

The 2020 holiday season may cause a lot of disappointment and frustration. I share my worst to first inspire you to look back for your worst holiday. Will 2020 be your new worst? Secondly, I share my worst because the title of worst is a little liberating. Maybe liberating isn’t the right term. But having lived through a “worst” experience, you will always have a benchmark for other disappointments. Bathroom floods; at least it wasn’t reliving that really heinous year when [fill in the blank].

Even if 2020 will be your worst Thanksgiving, you know the next time your celebration has a disruption, you’ll be able to remind yourself of your own personal worst and be thankful not to repeat it.

In our worst years, I hope you find at least one reason to be thankful, even if it’s just that McDonald’s drive thru was open so you could eat something that wasn’t burnt. Happy Thanksgiving.

The Irrational Fears of a Mom with Medically Complex Kids

There are a lot of posts out there about mom guilt and worries that go along with parenting. Am I spending enough quality time with my children? Am I setting a good example? Is my child kind? Does my kid have friends? Am I enough for my children? The list goes on and on. I’m positive every mom has these fears and worries. It just seems to go with the parenting territory.

I could write about these thoughts and worries too. I have them. I promise, I’m a regular mom with regular problems. But I won’t, at least not today. These fears already have voices. Moms talk about them pretty regularly. Basically, we moms are already normalizing these feelings and thoughts.

The thing is, I’m not just a regular mom. I’m also a mom whose kids have colorful and eventful health histories. I’m the mom of kids who battled cancer. I’m the mom of a kid with a pretty prominent disability. I’m the mom of kids who were born too early. I’m the mom of kids have logged more nights in hospitals than there are days in a year. So in addition to all the regular mom fears and second guesses, I also have another list other irrational fears related to not being “normal.”

Just How Crazy is She?

I worry someone who knows nothing about my family will overhear something about my children’s health and will have me investigated for munchausen syndrome by proxy. I’m 80 percent sure this will never happen. I know the medical issues my children have faced, and continue to face are all real. I know they are not related to anything I did or didn’t do. I know I didn’t cause them. I know the medical professionals who see us on a regular basis know we are legitimately affected by these issues. I know our friends and family know we just have really bad luck when it comes to health. I know all of this, but it doesn’t matter. It’s always in the back of my mind. And if I’m being brutally honest, I worry that admitting I have this fear will make someone all the more convinced that I do indeed have it.

Less crazily, I also assume most people will think I am making all of this up. They wonder why I would make all this up, and then roll their eyes behind my back. I get it. The amount of stuff my family, particularly the children, have experienced does seem far fetched—too far fetched even for the plot of a soap opera, unless it was for the town as a whole and not just one character. Either way, I would not blame anyone who hears (or reads) my stories and questions the validity of them. I promise not to even be offended.

Her Advice is Crap

As I talk to other moms and exchange tips and tricks, I fear that my contributions to the converstions will be dismissed or labeled as what not to do.

  • She said she didn’t think it was important to have all organic baby soaps and lotions, and two of her kids got cancer.
  • She said she drank coffee and ate lunch meat while she was pregnant and she delivered three months early.
  • She said her children are allowed to drink juice and cows’ milk, and she lets them eat processed foods. Her kids are not straight A students.

I am 60 percent sure this is not what is happening. I am 90 percent sure this is my own mom guilt finding a new outlet to make me doubt everything about myself. I still carry around a lot of unfounded guilt when it comes to my kids. Maybe if I had taken my pregnancy more seriously and rested more, I would have carried the twins to term. Maybe I consumed too many artificial food products while pregnant and that’s why my daughters had cancer. Maybe I should have spent more money to buy hormone-free animal products and organic everything to protect my children from, well, everything. Basically I am victim blaming myself.

Wait is She Excited about this?

I worry I come across too eager when I learn someone else has an experience similar to mine. Was my facial expression too cheerful when that mom said she was looking for a wheel chair? Did I actually look disappointed when I found out she needed a wheel chair for her 90-year-old grandfather? Am I too eager to connect with the mom whose child was recently diagnosed with cancer? Was it too aggressive to send my number and email to the mom at church who also welcomed twins into the world too early?

I’m sure at one point or another all moms over analyze how they have approached another mom at the PTA, little league, the playground, storytime, etc. But I don’t think I worry about those every day interactions as much. I’m a card-carrying member of our PTA and I volunteer for nothing. I don’t go to meetings. I won’t work the book fair. I don’t even care if my lack of participation is one the PTA officers’ radar. I’ve got time, and there could be a whole new leadership team next school year. It doesn’t bother me if every mom at T-ball thinks I’m a horrible person.

However when it comes to moms who have kids who have issues like my kids’ issues. Well, it’s a small pool. When you find someone who knows what you deal with, knows at least a piece of your reality, you don’t want to scare her away. You really want her to like you so you can have one more person who gets how you feel. Someone who you can really talk to about things. Someone who can help you prepare for a sleep study, a night in the PICU, travel after NICU, or recovery after a major surgery. You need someone who can tell you which medical equipment vendors are the most reliable.

She is Failing Her Children

I worry people will think I am prioritizing one child’s health over another’s. I worry people will think I’m not providing enough physical therapy at home. That I’m not spending enough time helping my children become great readers, and I’m not helping them commit math facts to memory.

I struggle the most with this category, because this is where I’m not sure those accusations are entirely wrong.

  • I spend too much time with whichever child is in the hospital and not enough time with the kids who are home.
  • I don’t read enough with and to my children.
  • I haven’t prioritized my children’s emotional and mental health the way I have prioritized their physical health.
  • My disabled child could go to therapy more often and we could and should spend more time on excersises at home.
  • I’m slowly causing my children to resent me because we don’t go to school fun nights because I think it’s too overwhelming to take everyone and didn’t bother to arrange for a sitter.
  • They hate me because they don’t always get to play sports or participate in clubs because we don’t have the extra money, all because I stopped working to stay home and provide care for the younger children.
  • I rely too much on my mother-in-law to help us when there is a hospital admission; when a doctor’s appointment conflicts with school pickup; or simply when I can’t figure out how to be in two places at once.
  • I worry my children will grow up resenting each other instead of growing into compassionate adults because they were short changed or felt neglected in those early formative years.
  • I worry that I don’t worry enough. I should not be able to sleep at night with all that is going on in my life. I’m all too comfortable in hospitals. I should be suffering from PTSD or PPD/PPA. But I actually sleep just fine. I don’t have trouble shutting off my brain or switching gears. I don’t cry when we get a new diagnosis or go into surgery. And I worry that means I don’t care enough.

So?

Seems as though this mom is a mixed bag of crazy. I’ve got mainstream mom issues. I’ve got fill-in-the-blank mom issues. I’m pretty sure my issues are only in my head. I recognize them as irrational (hello, title of this post). Maybe I’m crazy. Maybe I’m normal. Whatever it is, if you find yourself having the same irrational fears and doubts, you are not alone. And if it turns out I am alone, well, I’ll just own my crazy.

Premature Infants: Elephants in the Delivery Room

Every year, Nov. 17, is World Prematurity Day. The goal of this day is to bring awareness to preterm birth and the affects on families. So let’s talk about what it is like to deliver too soon. I won’t begin to speak for all parents of infants born too early. There are too many variables. I am just one mother. This is just my perspective.

When I gave birth to my twins at 24 weeks and 6 days, I was not prepared for the life I was about to live. Before my twins, I had given birth twice to beautiful full-term infants who tipped the scales at just under 9 pounds each—a daughter in 2009 who weighed 8 pounds, 14 ounces, and a son in 2013 who weighed 8 pounds, 15 ounces. It had never occurred to me that my third and fourth babies would be born too soon. I was cocky even when I was in preterm labor, because my previous pregnancies had gone so smoothly. Clearly, I WAS WRONG!

One of the first things I learned after my twins were born is how much everything hurts when your babies are born traumatically and whisked off to the neonatal intensive care unit (NICU). I’m not talking about physical pain that could accompany any delivery. I’m talking about the raw emotional pain I was in then, and continue to be in more than three years later.
Labor and Delivery isn’t Set Up for Parents of Preemies
The staff working in labor and delivery aren’t prepared for micropreemie infants. That’s what my twins were. Born at 24+6 weeks, weighing 1 pound, 11 ounces and 1 pound, 15 ounces, they were emotionally hard on the staff who attended my delivery. The thing is, it was emotionally hard on me too. I’ll even go far enough to argue it was harder on me than it was on them.

There are two things I vividly remember immediately following my twins’ birth. The first was the way the labor and delivery nurses comforted the pregnant resident who delivered my twins. I had just delivered baby B. Not a sound from him could be heard. The NICU nurses who attended the delivery were focused on him and the labor and delivery nurses were focused on the resident who began crying. My babies were so small, so early, so fragile that the resident in charge of the delivery was crying. Since she was visibly pregnant, it was hard for her to witness. The nurses consoled her. They told her it would be OK. Her baby would be fine. She should take a few moments to react to the trauma she just witnessed and process the situation.

Do you want to know what didn’t happen? No one talked to me. I had just delivered not one, but two babies more than 15 weeks before my due date. I had spent the last 12 hours in labor trying to keep those babies inside my body a little longer. I had just reached the point where we thought my labor was successfully stalled when my water broke and I was rushed into a delivery suite without time for any medications. I had just been told not to deliver the placentas and had an OB-GYN elbow-deep in my uterus to retrieve said placentas so they could be sent to the lab for further examination. Did I mention there was no time for pain medication?

No one talked to me. Everyone comforted the pregnant resident who was upset by the ordeal I had just lived. But no one talked to me.

The second thing I remember so vividly is recovering from the delivery in unit’s post-anesthesia care unit. Still, no one talked to me. A nurse sat with her back to me charting. She would check my vitals, but she didn’t really talk to me.

The first 30 minutes of my recovery I was alone with a nurse in a cold, bright, white recovery room. I had no idea if the babies I had just delivered were alive, I only knew they had been taken to the NICU. After that first half hour another woman was wheeled into the recovery room. It was loud. She had just had a c-section. She sounded overwhelmed. The nurse with her reassured her that she had done great. Her husband walked into recovery just a few minutes later. You could feel their excitement about having just become parents. They talked loudly. There was laughter. A little while later, a nurse brought in a baby wrapped in a blanket. There were gasps and cheers for this perfect little being who had begun to cry. While a celebration of the start of a new life was taking place on the other side of a curtain, I remained alone. Still no one talked to me. I spent most of my time in recovery sure twin B had died, trying to convince myself his death was for the best because I wasn’t equipped to raise four children.

After I had stayed in the recovery room for the prescribed amount of time, I was taken to a postpartum room. I was alone. I don’t remember for how long. I do know I could hear the newborn babies in neighboring rooms crying. Eventually someone took me to the NICU so I could meet my twins. I’m almost positive it was my husband who took me to the NICU.

I don’t think labor and delivery nurses knew what to say to me. They didn’t know how to interact with someone in my shoes. Thankfully NICU nurses were well equipped to handle me. They explained the world of the NICU and everything that was happening. During the next six months, they talked to me and they comforted me.
Everything Stings
Three years later, everything still hurts. Like grief, the pain is there, but it changes over time. The things that initially stung are now dull, but new things sting.

In the beginning it stung when people didn’t acknowledge I had just given birth. It stung when my boss had no expression of concern or wishes of congratulations. I’m sure people didn’t know what to say. It stung when I was discharged from the hospital and my babies remained, fighting for their next breath. It stung to see brand new babies and their parents being discharged home together with balloons, smiles, and well wishes from nurses. It stung when I went to my postpartum check up and my OB-GYN spent the visit trying to diagnose me with postpartum depression because I wasn’t my happy normal self, instead of hearing one of my twins had just been transferred to another hospital so he could have brain surgery. It wasn’t depression, it was worry and grief.

Today, the things that sting are the casual comments made by people who have no idea I have delivered early. It stings to hear (or read) about someone who hopes doctors take this baby early because pregnancy is “miserable.” I would prefer to vomit every day for 40 weeks and be kicked in the cervix by an elephant than to sit next to a plastic box every day for months while I have to ask to hold my baby, and some days be told no. It stings to read something that is supposed to reassure new parents but is wildly insensitive to those who have delivered early, or to those who delivered a very sick baby.

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Photo source: Facebook, Mommies With Heart

It seems, at least according to something like this, there is no greater sorrow than a deafening silence after your baby is born. That feeling of panic and desperation, not knowing if things will be OK, wondering if everything you just experienced was worth it.
Bottom Line
I get that this is my issue. I don’t expect people who are uncomfortably pregnant to stop complaining. I don’t want people to stop trying to reassure others that their birthing experiences, regardless of whether it followed a desired birth plan was indeed worth it. Yes, some things still are raw for me. But I don’t think life needs to contain more trigger warnings than it already does.

Here’s what I do want. Take World Prematurity Day as an opportunity to learn something about babies who are born too soon. The March of Dimes is a great place to start. Spoiler alert: premature infants aren’t tiny versions of full term infants; they aren’t in the NICU just to get bigger. If someone you know delivers early, reach out. It’s OK to say:

I also want healthcare professionals working in labor and delivery to recognize the pain that can accompany preterm birth. Learn how to better support parents who have just delivered preterm infants. Develop a better tool to screen for postpartum depression and post-traumatic stress disorder. But most importantly, don’t ignore us just because our experiences make you uncomfortable.