So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
I’ve only ever lurked on Band Back Together, but I feel like I need to tell my daughter’s story.
The pregnancy itself wasn’t bad, just the normal aches, pains, and nausea. Emotionally it was tough – there were issues found on ultrasounds, and my OB felt like it was her duty to present the worst-case scenario every time we spoke. I decided that if we had to hear bad news, I wanted it to be delivered by someone who was kind and knowledgeable, so we switched doctors and started seeing a maternal-fetal specialist.
He told us that there would be kidney issues when she was born, but nothing emergent.
My water broke 2 days before my due date. I had a good, quick labor. There was meconium in the amniotic fluid, but otherwise it went well. She was born just after midnight, with good Apgar scores. She weighed nearly nine pounds! She had no interest in nursing, and she wasn’t into the formula they offered, either. A couple hours later, her blood sugar started to drop, and then she stopped breathing. They took her to the NICU for observation. I’d worked a full day before my water broke, so by the time they took her away I had been awake for almost 24 hours. I was sent to a recovery room without my baby.
That day and the next are a blur. This was my first child, and I had no idea what to expect from a normal birth or a brand new baby. I only knew that this was not what I expected. I alternated between recovering in my room and sitting with my daughter in the NICU. She would barely take any food and kept even less down. There were multiple doctors coming in and out and multiple tests being done – blood draws, x-rays, upper and lower GI, etc.
Finally they determined that she had intestinal malrotation. That means her intestines were jumbled and twisted and not anchored in any way. If untreated or undiscovered, it quickly damages the bowels and then leads to death, essentially by starvation. Surgery was set for Friday night, the same time that I was to be released. I had no choice but to hand over my 3-day old baby to be intubated and placed under general anesthesia so that a surgeon could cut open and rearrange her guts.
My husband, my mom, my mother-in-law, and a close friend were with me during the surgery. Around midnight, the surgery was finally complete. They would only allow 2 people in the room with her at a time, so I stayed there while everyone else took turns coming in to see her. I can’t even describe how it felt to see the 3-inch incision across her tiny little belly. She had wires and tubes everywhere, and we were not allowed to hold her. I could tell she was in pain – when on a ventilator, the vocal cords don’t make noise, but I could see her screaming.
My mom and dear friend knew what kind of comfort I needed – they just held me and murmured words of consolation while I tried in vain to keep it together. My mother-in-law was not so in tune with what I needed – she wanted to touch her, and exclaim over her, and it was all just too much for me. I was completely helpless and broken. I had my husband make everyone leave, and then I left, too. I left my silently screaming baby in the care of total strangers, Band. At that moment, I was certain that the nurses could do more for her than I could. Now, when I look back, I am unable to forgive myself for leaving her.
That night turned out to be the beginning of a long journey. She had 2 more surgeries and lots more testing; we found out that she has a genetic anomaly that seemed to be the cause of her birth defects. She was 9 weeks old when we were finally allowed to take her home – just a few days after my first Mother’s Day.
My daughter is now almost 3 years old. She has very low muscle tone and is still quite delayed, and she is a beautiful, happy, easygoing little girl. She wears her battle scars with no complaint, and despite my failings, she loves me completely.
We haven’t been “together” since I was three months pregnant with his daughter. That was when he decided to back me into a corner and scream in my face over something silly. That was after he broke my phone in half. My two older kids were asleep in the other room, and he refused to leave MY house. The next day, I took my kids to my aunt’s house with me. He got pissed and started screaming at me again.
I called my aunt behind his back and he tried to slap me, with my terrified children at my feet. I moved out in three hours, after he went to work one Saturday, with the help of some amazing friends.
I missed grabbing some things in the shuffle and he refused to give them back. After I told the landlord I’d moved, he finally moved out; then he moved in with a mutual friend. The friend called me one day so I could get my things from his room while he was gone.
You should have heard that fight: What right did I have going into his house and taking his things? He never did understand that it was NOT his house, and I was invited by the homeowners AND didn’t touch his stuff. I only took mine.
Shortly after that, he amazingly made up with one of his “mortal enemies” and moved in with them. The best part? The house was three houses away from my grandma’s – where I’d moved with my children. He’d call every time I left the house or returned home – every time there was a car in the driveway. Sometimes, he’d call over 10 times in one minute.
One night, I called the police. The next day I got: “I don’t know which of your boyfriends you had call me, but I know you’re a liar and that was not a cop. A cop wouldn’t have restricted their number.” That is the level of stupid I deal with.
Our daughter – who is now four – was born and things are just as bad. If he even THINKS I am seeing someone he says, “We need to talk.” One time, after he found out I was dating someone, he refused to give my daughter back after a scheduled visitation.
I called the police.
They showed up and he said, “Oh I’m sorry officer. I never told her she couldn’t take the baby. I was just going to get her when she called.”
Mind you, he pushed me out of his way because I was just going to go in the house and take her. My other kids again, right there, saw it all.
If I make plans, he wants to know with whom, where, and when. And if he can watch the kids, which he doesn’t seem to understand will NEVER happen.
The one time I allowed him to watch all the kids, he decided to take a bath with my daughter – my daughter from a previous marriage. During this (naked) bath, he talked to her about his flaccid penis floating in the water. The detectives couldn’t prove anything, other than suspicions that he was “grooming” her, so everything was dropped.
This is the ONE thing I said would never happen to my kids, and I just handed it to him. Let the courts handle it instead of letting every single person I know kick his ass. And in the end, I should have just let them. Maybe then he’d understand.
The controlling goes on and on. I’ve told him to leave me alone. He always threatens custody, which, okay, I know I can’t afford that fight. He can because his mom always backs him up. no. matter. what. So, I stay quiet.
He makes sure our daughter has what she needs and I’m grateful for that.
But part of me wonders if it’s another way to control me – every time I refuse to tell him what I’m doing, he asks our daughter about me. Every time. Never fails.
He will buy me underwear or swimsuits, and he won’t take “no” for an answer. When we drop off or pick up our daughter, he backs me into a corner and kisses my neck. He makes inappropriate comments. I absolutely know this tactic. But I’m so tired of fighting – I simply don’t say anything.
Pervert is sometimes easier to deal with than asshole. In doing this, I know I’m letting him win. My depression will never get better with his behavior – I simply don’t know how to stop it.
He’s been blowing up my phone for two days because I didn’t tell him good morning or answer a rhetorical text he sent.
I love my daughter to pieces – don’t get me wrong…but sometimes…nope, can’t even write it. I love her too much.
I just want to take my children and run far, far away.
I don’t know what to do, The Band, and I don’t know how much longer I can keep doing this.
We voted and decided we deserve some extra Happy this week. This, The Band, is some pure joy, just for us, just because:
I’ve always loved music, especially singing. It has always been a huge part of my life.
One of my earliest music-related memories (aside from the memories of the first songs I ever remember hearing, which include Led Zeppelin’s “Stairway to Heaven” and Iron Butterfly’s “In-A-Gadda-Da-Vida”) is the song I sang in the auditions for the 2nd grade (or so) talent show.
From Hee Haw:
“Where, oh where, are you tonight? Why did you leave me here all alone? I searched the world over, and I thought I’d found true love, You met another, and PFFT! You was gone!”
I wore overalls, a flannel shirt, cowboy boots, and a straw hat – with a piece of hay hanging out of my mouth.
This will always be one of my favorite childhood and musical memories. And? Thinking of it never fails to make my heart smile.
By the time my first baby was born, I had been in therapy for about a year and a half. When I started therapy, I had reached a point where I knew I needed help, and the risk of reaching out for help was outweighed by the burden of sitting alone with the darkness I felt any longer. Therapy helped me a ton and I was in a much better spot when I became pregnant. My husband and I had been married for two years, and though the pregnancy was unplanned, I desperately wanted a baby.
Pregnancy was a roller coaster of emotions, with lots of vomiting. The last couple of months were good, and I felt strong and ready for childbirth, but still unsure of motherhood. My labor was not typical and there were a stressful three days and 20ish hours of active labor that led up to the birth of my daughter. By the time she was born, I was exhausted. The first thought I remember having when my husband placed my baby on my chest was “I don’t know how to do this,” followed by apologizing that she was crying and that I had been too loud during labor. I felt ashamed, like I somehow didn’t do it right. Then I felt doubly ashamed for commenting about the baby crying, because obviously babies are supposed to cry. And what kind of mother would think there is something wrong with her baby crying right after she’s born? No one was putting this on me or making me feel this way. There was also joy and a deep cozy feeling when cuddling my new babe but, mostly, I was scared, tired, and feeling completely unqualified.
The nurse let me “rest” for a few hours after the birth, during which my husband and baby took a nap, and I ate and took a shower. Then the nurse came back in to give me a bunch of instructions on baby care before sending me home with an hours-old extremely delicate creature who completely depended on me for survival. I told the nurse that I was too tired to remember anything and I wasn’t sure I was qualified to care for a newborn. She told me that newborns were made for new parents (which was oddly reassuring) and to set an alarm to go off every two hours all night long, so that I could wake up to feed the baby. She emphasized how important it was that I feed the baby every two hours and wake her up to feed if she was sleeping.
The first night was hard. I remember my husband waking me up because I didn’t hear the alarm going off under my pillow. I don’t remember if the baby was awake, too, in the cosleeper beside our bed, but I do remember that every time I tried to nurse her, she would fall right back to sleep. The next day, I called the nursing support line and they told me she was a “sleepy nurser,” and gave me some tips on how to wake her up to nurse. My mom stayed with us for about three days to help out and my grandparents came to meet the new baby. After about five days, my husband went back to work and I was very much alone at home.
I remember worrying about a lot of things and wanting to do everything right. I remember her gazing into my face as I rocked and nursed her, looking into her big dark eyes and feeling like I was falling down a very deep tunnel. Then weird thoughts would flash through my mind: “What if she can’t breathe while she is nursing, what if she knows I have no idea what I am doing, what if she is a demon? I am not emotionally stable enough to be a mother; what if someone finds out and takes her away from me?” This scared me to the point that I avoided looking into her eyes. I never wanted to hurt my child, but I was afraid of the things going through my mind.
I was especially scared of trimming her fingernails. They were so tiny and her fingers were so precious. I worried that I would snip them with the trimmers by accident. Several people suggested that it was easier to chew baby nails than to trim them, but every time I thought of this, a picture would flash into my mind of my sweet baby’s finger chewed to a bloody nub. Sometimes those flashes would come when I was trimming her nails and I started trimming them only when I was feeling well rested, for fear of having one of those thoughts and freaking out.
There were other things that I knew I weren’t right too. Anytime I saw one of those child safety tags they put on every piece of baby gear, I would visualize whatever horror they warned about happening to my baby. I would lay her in the Pack-n-Play, catch a glimpse of the warning label and have a flash of finding her suffocated. Same with the baby carrier, the stroller, and the baby bathtub. She would cry when my husband tried to put her to sleep at night and I remember worrying that my husband was sexually abusing her, and wrestling with that being a totally crazy thought, but still feeling that I needed to protect her from him. (Please note my husband has never and would never do this. I think this just came up in my mind because my mother had been sexually abused by her father when she was a kid and I was just having really bizarre thoughts). Instead of resting, I would stay awake listening to them on the baby monitor, crying and worrying until she went to sleep. Once she was asleep, I would lay awake in bed thinking about all the horrible crap that could happen, plus my to-do list, and what a fucked-up person I was.
These thoughts were scary to me, but they weren’t entirely new. During the deepest part of my depression a few years earlier, I had similar gruesome flashes any time I saw my husband’s X-Acto knife. That gruesome image was always of the knife slicing my wrists, which is why I finally went into therapy, though I never told my therapist of my concerns about the knife. I was afraid that if I told her, she would have me committed or the have the baby taken away. I was not suicidal, did not use self harm, and absolutely did not want to kill myself.
When my maternity leave ended, I went back to work. I was incredibly sleep deprived because my baby would not take a bottle while I was gone and would nurse every two hours all night long. Her weight percentage had gone down and the doctor was concerned about her getting enough milk and gaining weight. I kept up the night feedings, tried different things to get her weight up and worried about everything. The gruesome images and thoughts kept up for a while, too. I can’t remember exactly when I stopped having them, but I remember having them when some friends came to visit when my baby was about six months old.
Around that time I attempted to handle my anxiety by smoking pot or drinking after I put the baby to bed at night. This helped me numb out a little but, ultimately, it added to my anxiety. Before becoming pregnant, I drank and smoked a lot, and it was too easy to fall back on those unhealthy coping mechanisms. I stayed in therapy for another year and a half for post-partum depression, and my therapist helped me “fact check” some of my irrational fears, like that my baby was going to starve to death or that my husband couldn’t adequately care for her while I was at work. She also helped me figure out what self care was, and generally made me feel loved and supported. Even though I never disclosed everything that I was experiencing, having her support was extremely helpful. I will forever be grateful for how kind she was to me and how much she helped me during this time.
Eventually, my husband and I decided that we were both worn too thin with our work schedules, and figured out how I could leave my job and stay home. When I left my job, I also lost the mental health care coverage I had through my insurance. My therapist and I made a self care and emergency plan in case the depression came back. When I ended therapy, I decided to stop smoking pot entirely. Facing shit without an easy numb-out was harder than I thought it would, and the first three days, everything felt very intense. Even though I didn’t smoke “that much,” I knew it was important for me to quit and develop some healthier ways of being in the world. I also joined a support group, took an online self care class for moms, started exercising, and found a really cool mental health video game that taught me about different aspects of self care.
When my second baby was born two years ago, I asked for more support from my family after the birth and I had a community of moms to talk with. I kept track of my two week timeline for depression and was more aware of how that looks in my own mind. Although there were things that I worried about and struggled with, I did not have any of the scary thoughts or gruesome flashes as the first time around. I did feel overwhelmingly joyful about gazing into his newborn eyes. It was a totally different and less scary experience. Having a completely different post-partum experience the second time has shown me how much of my experience was PPD and not just typical new motherhood.
I hope that my story will encourage other moms to get the support they need if they are experiencing PPD after the birth of a baby or depression years later. It can be hard to see the symptoms when you are in the fog of it, and it is worth seeking help if you aren’t sure about what you’re experiencing. Healing is worth it. You are worth it.
