Category: Preemie Parenting

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.

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Another COVID Comparison

Here we are, seven, maybe eight months into the COVID-19 pandemic and I think it’s time to once again put this pandemic into a different light. Time again to compare this to raising medically complex kids. I feel like this should have special theme music while you read it. I’ll have to work on that.

Timelines Are Meaningless

At the start of this pandemic, we were dealing with things in weeks. Then we moved onto dealing in months. Now you may find yourself dealing in seasons. Either way, the timeline you were originally given, or thought you had, was meaningless. It’s like delivering prematurely and seeing your due date as the end goal. Or having a clear chemo map for cancer treatment that outlines when admissions happen and when you are home. It all looks good on paper, and for some it might work out that way. But for a lot of people — and always in my house — life finds a way to make its own timeline. My preemies came home months after my due date. They aren’t ‘all caught up’ by age 2, another timeline preemie parents are given. The chemo timeline for my daughter was weeks of hospital stays with a few days at home here and there.

In reality, the timelines are meaningless, and that is OK. You want to make decisions based on what is happening and not based on where someone drew a line in the sand. It can be frustrating to have a moving target. It can be taxing when it feels like this chaos is now your life. In a way, the chaos is your life, and that is OK.  Just like it’s OK to not be OK.

My best advice is to embrace the chaos. Become familiar with the parameters of what moving on looks like and start tracking things yourself. The down side to this is you cannot live in denial. The upside is there are very few surprises in this approach. For me the decision boils down to weighing whether I would rather get my hopes up and my heart broken regularly, or would I rather live in reality and be able to see the turns coming. In case you’re wondering, I always choose reality over blind hope. The disappointment that co.es with my blind hope is crushing and it’s not good for my mental health. I need to keep it as real as possible.

Self Imposed “Experts”

I’m sure your social media timeline, much like mine, is sprinkled with new found ‘experts’ in infectious disease. These are the people who suddenly know what doctors won’t tell you. Very ominous, very poorly informed.

In the context of COVID-19, they are the ones who tell you wearing masks will make you more sick; the virus will disappear after X, Y, and Z (none of which involves social distancing, masking, or developing a vaccine); and they try to pick apart every decision you make for your family’s health safety. These people are friends and family members, strangers you randomly encounter, and close acquaintances.

People surface to take on this role during every health issue. If you have typical kids, you probably didn’t know they existed outside of COVID. There are self imposed experts in all issues around health. The woman in the waiting room who tells you not to hold your cellphone while being near your children because of the link to cancer. The acquaintance who tells you about someone who gave birth in the first trimester and the baby is fine now (really, I think they just mix up gestational weeks with how many weeks early a baby was). The person at church who insists a special diet (be it clean eating, low sugar, etc.) is the key to beating cancer. They are the ones who have very little knowledge of what you are actually dealing with, but have  potentially life changing advice for you anyway. Many times, their miracle advice directly contradicts what specialists are telling you.

These people all mean well. At least I choose to believe they really believe the advice they peddle and just want to help you. But instead of helping, they become a source of aggravation. And how you deal with that aggravation really depends on when and how this information was shared. The cellphone lady in the waiting room got a casual “thanks for the information” and a private laugh and hard eye roll later. Wrong information sources with a closer connections got a challenge to the accuracy of the information they shared (e.g., a baby cannot be born and survive at 10 weeks gestation, you must have meant 10 weeks early, which is 30 weeks gestation). My reaction always depends on my mood, and how likely it is I will encounter them again.

To Work or Stay Home

When the COVID shutdowns started everyone thought this would be a short-term issue. Businesses temporarily closed, those that could switch to operating remotely, did. It felt like things we could figure out for now. After a while, with kids learning from home, parents working from home became challenging. Kids learning from home and parents required to physically report to work became close to impossible. A lot of parents had to get creative with scheduling and childcare. Many more parents felt forced to make difficult decisions related to working and caring for their children. Do they continue to work as they traditionally did and take on a nanny? Does one of them take a step back professionally to focus more energy at home? Does it make more sense for their family for one parent to resign and stay home with the kids? These alone are difficult decisions, but then they were compounded with pandemic issues of quarantining, and who do you trust to be as cautious as you are. It is a daunting emotional task.

These are the same decisions parents of medically complex kids face. A lot of us faced them before COVID. Some of us had to revisit them because of COVID. I am one of those moms who ultimately decided to put her professional life on hold.  My decision was inspired by the attention my kids needed and later reinforced by the overwhelming amount of time I would need to take off to attend medic appointments, therapies, and be present during hospital admissions. There also were issues around who did I trust to learn and feel comfortable enough to take on oxygen management, ostomy bag replacement, tube feeds, etc. That list was short, even more so because most of the list of people who I felt comfortable with, didn’t feel confident enough to step in for me for long periods of time.

But Wait, There’s More

Whether you think about COVID or just 2020, there always is new information coming out. COVID symptoms we initially looked at were cough and fever. Now the list of possible symptoms is at least five times longer. It feels like an infomercial rattling off product features only to follow the list with, “but wait, there’s more.” Always a new piece of information. A growing list of long-term side effects. Really, now is the perfect time to say, “but wait, there’s more.”

Not all parents of medically complex kids may agree with me, but in my experience my kids’ conditions also involve a lot of, “but wait there’s more.”

  • Your twins are very early and very tiny, but wait there’s more, here is a whole list of NICU conditions you will experience before you can go home.
  • Your son has hydrocephalus, but wait there’s more, he also has CP.
  • Your daughter has liver cancer, but wait there’s more, she also needs an organ transplant.

Even now, when things in my house seem to be stable, I brace for the next, “but wait, there’s more” episode. I always expect there will be something else, not that I want it, but expecting it makes the news less devastating. It’s really a prepare for the worst and hope for the best mentality. It seems to serve me well.

Why Compare?

My point here only is that life changing events come with universal issues. Whether you experienced these issues alone or you experienced these issues with a nation of others, it all sucks. I make these comparisons to let you know some people have a lot of experience with these issues. To let you know, they are survivable. To remind you, your life and happiness are not tied to ‘normal’ life or expectations. After all, normal is only a machine setting.

Basically, it’s all going to be OK.

Happy Mothers Day, Warrior Mama!

Oh, mama! I know your life is not what you thought it would be. I know this is not how you saw yourself as a mother — running to medical appointments instead of soccer practices. But your unimaginable life has made you a mother beyond compare. No one advocates for their child the way you do. You took on the world without time to think or prepare. You stepped in. You rose up. You madam, are amazing. Even if you don’t feel amazing.

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Happy Mothers Day!

Happy Mothers Day to the mother who has seen her baby in a plastic box. The mother who had to ask a nurse when she could hold or touch her baby for the first time. The mother who knows what a baby needs to do to move out of an incubator and into an open crib.

Happy Mothers Day to the mother who has seen her child intubated and knows the sounds a ventilator makes. Do-do-do-doo-doot. The mother who knows the difference between a ventilator, CPAP, high flow, nasal cannulas, and room air.

Happy Mothers Day to the mother who has spent countless nights (and maybe a few holidays) in her child’s hospital room. The mother whose child has been in an ICU (NICU or PICU). The mother who has spent so many nights in a hospital room with her child that she has a preferred style of parent sleep couch.

Happy Mothers Day to the mother who has spent hours in an emergency department with her child. Injuries. Seizures. Illnesses. Episodes of respiratory distress. Gateways to admission. Really too many reasons to list.

Happy Mothers Day to the mother whose child has a lifelong chronic condition. The mother who knows another admission may just be a matter of time. The mother who always waits for the other shoe to drop.

Happy Mothers Day to the mother who has sent her child into surgery. The mother whose been in a surgery waiting room more times than she cares to count.

Happy Mothers Day to the mother who takes her child to countless therapy appointments. The mother who has been told what her child will never do. The mother who hopes her child will defy the odds. The mother who helps her child find as much independence as possible.

Happy Mothers Day to the mother who prepares for IEP meetings like she is going into battle. The mother who fights to give her child every chance.

Happy Mothers Day to the mother who knows more about her child than she ever thought she would need to know. The mother who knows how her child reacts to medications. The mother who knows her child’s recovery patterns. The mother who knows what type of cough precedes vomiting.

Happy Mothers Day to the mother who has ever felt like a home care nurse. The mother who gives multiple daily medicines. The mother who feeds her child through a tube. The mother who has oxygen tanks and/or oxygen concentrator in her home. The mother who watches her child’s monitor for apneas and bradys. The mother who can hook up IV fluids, IV antibiotics, and/or IV nutrition in her home.

Happy Mothers Day to the mother who didn’t think she could all do this. To the mother who thought she wasn’t capable of managing her child’s health. To the mother who was and is scared. To the mother who feels overwhelmed, but continues to push forward. To the mother who gives everything she has to her child(ren) so they can have a more typical childhood. To the mother who still blames herself. To the mother who wonders why. To the mother who feels like she isn’t doing enough. To the mother who feels lost to her child’s medical diagnoses.

Happy Mothers Day, warriors! I hope you feel seen, appreciated, and loved. I hope you are celebrated. I hope you take a moment to realize how amazing you are.

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.