Not Alone

I stole this from another moms blog, but loved it, so I dont feel too bad.


A Different Journey: Reactions to a Premature Birth
Mara Tesler Stein, Psy.D.


So many times when I talk to parents, I hear a deep sense of bewilderment in their voices, in the questions that they ask. Their puzzlement at first seems to be a reflection of their attempts to find their way around in their new circumstances. After all, when you have a preemie, you are suddenly thrust into this confusing and overwhelming world -- you are disoriented. You are flooded with feelings and drowning in information. As you feel your way about in this unfamiliar and frightening place, your confusion begins to diminish. And yet, if you are still left with a vague (and sometimes, not so vague!) feeling of unease, of something being different about you, you are not alone.


Parents may worry after a year, two years, ten years or twenty, that they have not "gotten over" the traumas and losses of having a premature baby. They may concede that they are more vigilant now. They sometimes find themselves very afraid that something awful will happen to their child. Memories pop up in the most unexpected places. Tears well up without warning. They secretly wonder if they have PTSD or are not moving through the "stages" of grief in the "right" way. They imagine that the premature birth irreparably damaged something in them. In short, they fear that something is terribly wrong with them.


Our appreciation (as a society) for the monumental changes that occur during pregnancy and after childbirth has grown in recent years. Now, instead of primarily encouraging parents to learn about the biological changes that they are going through, we are also talking about the emotional and social transformation that any parent experiences after the birth of a new baby.


Parents who have uncomplicated pregnancies and full-term deliveries have a community of people that they join when they have their babies. More and more, they find the changes that they feel acknowledged and validated. Parents of full-term babies say with a chuckle, "I'll never be the same again" and most other parents know just what they mean.


None of us will ever be the same again -- but a lot of the time, we're not so sure that anybody knows what we mean. Our journey was distinct. Our transformation took a startling path -- perhaps a longer road or one with more twists and turns. We are different now. And the unease we feel, I believe, comes in part from our struggle to figure out who we are now, how we fit in to the world we used to inhabit, and how we want to move forward.


So many times, parents talk about how their babies amaze them. This is regardless of whether your preemie survived -- whether you felt your baby move inside you strongly but then didn't have that chance after delivery; whether you saw your baby struggle with all they had, only to have organs fail; or whether your baby survived to come home and grow up.

"They are so strong," parents say. "They are such survivors, such fighters."


I'll bet that each and every one of you made it through something that would have been unimaginable to you before you survived it. Total bedrest? Magnesium Sulfate? Juggling the needs of older children and unborn ones? Splitting time between competing demands of work, school, home, spouse, and helpless baby in the NICU? Knowing and loving your tiny babies; wishing you could take their place; making unfathomable decisions; truly wishing and hoping while living with not knowing.


Have you given yourself the chance to look back at that time and the time that has passed since then and marvel at yourself? Can you remember who you were before this pregnancy, this child? Take a minute to think about the things that you have learned about yourself. Reflect for a moment on the things that you know now, the things that transformed who you were into the person you are today. I'm certain all of you can detail the steps, small and large, that your preemies took in their own development -- have you given yourself the chance to really appreciate your own metamorphosis?


Some of us feel like walking wounded much of the time. Ever vigilant, we wait for the next shoe to drop, and then the next one and the next one. Others may feel more robust now, but still different than before. It's not just because of being parents to this new baby -- but because of how you got there. You have seen something profoundly different. You know things that you didn't know before, and that many parents out there still don't know.


It's because we love as deeply as we do that we struggle so much. We want our children to sail through. We want to spare them any suffering. We want them to have every possible chance to thrive. And as parents, we are faced with the reality that we can't always shield our children. We cannot take over, take all control and make everything all right. It's terrifying. And infuriating. And so terribly sad. Most parents gain this in practical experience over the course of a lifetime of parenting. Parents of preemies are in the unique position of facing this reality much, much sooner.


And so we have to figure out how to move forward -- bearing these awesome losses and carrying this monumental knowledge. It's the sort of thing that can paralyze you -- and often does, at first. And then we slowly start to think again, to move again, and to trust again. It's not that you start to believe that the world is always fair or perfect or that "everything will be okay." But you start to remember the ways in which things are okay, and trust in your own ability to not merely survive, but also to make some sense out of all of this. Maybe you come to some acceptance of the limitations you or your child face. Maybe you search for ways to help other people in your shoes. Maybe you start to actually find value in this journey.


One thing is for certain. You will never be quite the same, again. But I would like to suggest that this journey leaves us altogether wiser, stronger, more tender and more human. And it is the lessons that we learn that we pass to our children.


I can remember in the weeks of my long hospitalization and during the early weeks after my girls were born -- struggling with the fact that in the course of one hour, I had gone from being professor/supervisor/therapist, to being helpless; hooked up to an IV and a fetal monitor, and completely disoriented. Above and beyond the shock, my identity, who I was, was hooked into my profession, my confidence in my ability to understand, to tolerate ambiguity (yes, I thought that I was very good at tolerating ambiguity!), and to cope. And there I lay, in a hospital bed -- more afraid than I had ever been in my entire life.


I remember being angry that the doctors weren't treating me like a peer. I remember being frustrated that they wouldn't (or more likely, couldn't) answer my never-ending questions. I remember having a terrible time figuring out where to put "Dr. Stein" when Mara was laying in a hospital bed, terrified of losing her babies.


But an interesting thing started to happen. My mixed feelings about actually having these babies started to disappear. My worries about whether I would be a good mom, whether I could put myself aside for them (all typical first-time parent worries, I know, but intense nonetheless) stopped being such concerns. One awful night, as I prayed that the reason I was having trouble breathing was because of a pulmonary embolism (They could treat me, right? I was resilient) rather than a feared uterine infection (that would mean delivering the twins immediately, who knew what they could survive), I realized that I would do anything that I could to protect these children. It was like a new part of me was born -- myself as "mother."



Once the twins were born, their first weeks were a total blur. That previously competent, confident "Dr. Stein" was really nowhere to be found. The sobbing woman standing over those warming beds, wishing she could breathe for her babies was unfamiliar. The gradual slipping away of my old self during the hospitalization seemed complete. It was hard to even imagine being the way I had been before. And then something surprising began to happen. I started to "wake up." But the person I woke up to was not the one who had gone to sleep. Two experiences (one with each of my new daughters) opened the door to the blending of my old self -- not quite as it was, and my new self -- not yet formed.


The first real sign of it happened on a day when the twins were about ten days old. Layla had an umbilical line that prevented us from holding her. As the days passed, and she stabilized, I started to become concerned (as a child psychologist, I told myself) that she had never been held. The nurses dissuaded me, said that every time she was touched, she desaturated. But I persisted -- most of their touching was intrusive (by necessity) and disturbing to her. She needed her mommy to hold her. Was I her mommy? I felt so detached, but part of me pressed on. Finally, they pulled the line, and sat me down in a rocker, placing Layla in my arms. Both of us took a deep breath. She curled up against me, and I watched her oxygen saturation climb. It was hard not to be smug.


The next sign happened when they were three weeks old. Stable on a small amount of oxygen, Gavriella began to desaturate slightly, but regularly. I became increasingly anxious. I felt a knot in the pit of my stomach. I wanted to know what was wrong, I wanted the doctors to take some action towards determining why this was happening. Everyone seemed quite nonchalant. "It's just a preemie thing." they said. It just wasn't good enough. So for the first time, I pushed. I asked to have our primary attending paged. After some confusion, the attending present agreed to do a chest x-ray. I left the unit for change of shift and when I returned, I was informed that Gavi had some pulmonary edema. "I know." I said.


Our resident, a new mom herself, came up to me and said, "You're a mom, you know these things." But I rejected that idea, initially. "I'm a clinician!" I said. "I know how to go about making a diagnosis -- I just don't have all the medical information to make a diagnosis here!" At the time, I couldn't accept that there was a part of me that knew, that felt, and was accurate -- and that this part was not purely my professional self. I couldn't believe that there was a competent mom inside of me. And I also couldn't really believe that the agonizing knot in my stomach that I felt when watching Gavriella's monitor had anything to do with being competent -- with being relevant. What I realize now, looking back, is that these were the first small steps towards integrating who I used to be, and who I am now.


I used to be a professional. I still am, but now I'm a mom. I'm not just any kind of mom, I'm a mom who went on this journey and is still surviving, most days!


Take some time and think about the way things used to be -- the way you used to be. Think some more about what this experience has given you. The journey is ongoing. The road you are on will never be the same one that you thought you were entering when you imagined parenting this baby. The parent you imagined that you would be is probably somewhat different than how you developed. But this difference does not mean that you are damaged. It does not mean that you have not "recovered" from the premature birth. What it means is that you are transformed. And that's exactly as it should be

I did not understand

In the last year my life has changed dramatically. I used to be consumed with being a wife and working full time. I got married in July last year, and then in November found out I was pregnant. We went in to our first prenatal visit and since I was not sure how far along I was, they scheduled an early ultrasound. We went in for our ultrasound, and found out I was just past 5 weeks along, and that I was pregnant with TWINS. This was a shock to all involved, and I could not believe that I was going to be a mommy of twins. My pregnancy was pretty run of the mill up until I was about 28 weeks along. This is when I really started to feel the terribleness of having two babies in a place where really only one should be. Then the problems started. At first my cervix was short, so my doc told me to start to take it easier, perhaps start cutting my work days in half. So I did, then they did an ultrasound, and the babies were smaller than they should be. So they set me up with an appointment with a specialist. We went to this appointment and found out that the babies were small, but that they were still in the 25thish percentile, so they were not too worried. However, while doing this ultrasound they found out that my cervix had shortened to half of what it was, and at that point, they put me on bedrest. I do not know how many have been on bedrest, but it really is not cool. It is horrible not being able to do anything. Honestly at this point there was so much I really could not do anyway. Many would tell me that I looked great, and they could not even tell that I was pregnant with twins, but regardless of how I looked, I FELT pregnant with twins. At my 35 week appointment, they found protein in my urine, and I had elevated blood pressure, so the doc I saw which was not my normal OB told me to take some tests, and go to the hospital on Saturday to do a Non Stress Test. So I showed up, lo and behold that evening due to intrauterine growth restriction due to preeclampsia they scheduled an emergency c-section. This is all in my birth story,
Now everything really has changed. Everyone told us that it would, but you do not really understand until you are there. My life is now consumed with love, tons of poopy/wet diapers, breastfeeding twins at the same time at night, pumping during the day along with bottle feeding them, and thoroughly enjoying the feeling of not being pregnant with twins anymore.
So many people told me it would be crazy. And it is.
I was told about sleepless nights. Indeed they are.
I have heard I will have my hands full. Yep, one baby for each hand. My hands and my heart are overfull.
I was told my life would never be the same, because it would never again be just about me. But that it would not matter, because it would be worth it. This was something I really did struggle to believe. This is because I am one of those people who really did not care to be around other people’s kids/infants. My whole life I have been nervous about having my own kids because I have never been one who connected with kids; especially babies. I always hoped that it would be different when they were my own.
Then I was blessed with the gift of these little angels, and the power to love beyond anything I could have imagined. I am holding on tightly to these moments. I love these little ones. Their cries, their little breaths against my skin, their personalities. My heart is full of gratitude.
I may no longer have time to shower everyday and I can't remember if I had time to brush my teeth today.
I do know one thing, however, I got to snuggle two beautiful newborns all day...and then again all night.
I go back to work on Monday, and I hope that I can somehow figure out how to have a work/life balance. I will miss my girls more than anything. I already know this. I have not felt it yet, so I do not know how deeply it will affect me,
I know it will affect me though, because I have never wanted to be somewhere so badly as I do now. I want to be by these little girls sides watching them grow, and experience life. I want to see their first little laughs, their first grin, the first time they roll over during tummy time; I want to see all their firsts and seconds and thirds. And when I go back to work fulltime I am going to miss so many of these things.
Ben is going to be staying home with the girls for a while, and I know that he would rather be out providing for the family, and have a good stable job, but I am so jealous of him. Jealous that he is going to be able to see the girls all day every day, and he will be the one to witness the firsts in their lives, and I will be at work dealing with things and people who don’t really matter while missing out on the milestones of the two little girls that I love more than I can stand.