Welcome, Mamma Crew, to another chaotic, exciting, but always beautiful day of an older mom like you!
Today, Pudgie is joining us again! You get to hear her little snorts. She’s joining us for this episode. She just went to the groomer, and she’s just looking good! Look at that face!
So, today we’re going to talk about the isolation that moms of preemies often feel.
So, the girls were born, and everybody was so excited! And then we get the terrible news that Andy is struggling. And, of course, I knew that we were in the best NICU hospital in the area. I knew my babies were getting good care, but I was terrified. I was terrified out of my mind! But people still wanted to treat me like nothing was wrong. Nothing was going on. I should be happy the babies were born and enjoy being a mom. But both of my babies were in the NICU, and one of them was struggling.
When I finally took them home, I thought the situation would improve. But it actually got harder because people couldn’t understand that there were challenges ahead. They keep saying things to me like, “Well, they’re home. They’re finally home. You should be happy! Why aren’t you happy?”
I was happy. I was just also exhausted and had a lot of conflicting emotions. So, one of the biggest challenges for me as a mom of preemies was people wanted me to pretend that everything was “normal,” whatever that means. When I was facing many challenges, I found being the mom of preemies to be very isolating.
First, I was really angry with myself. I felt betrayed by my body. I was not a drinker. I drank on social occasions, maybe five times a year. And if you combine how much I had during those five times a year that I did drink, I’m going to say maybe I have three or four glasses of white wine.
When I was a teenager, I smoked for a whole five days. And when I was in France, I tried smoking because they kept giving me free flavored cigarettes. But I just couldn’t get into it. So, I’m going to say, combined, maybe seven days of smoking in my entire life. I never did hard drugs. I never got addicted to painkillers, although many women with endometriosis face that challenge because we live in constant pain. And my doctor kept saying I was very healthy, but my cervix was incompetent. It was extremely upsetting! And I blamed myself because if I had really been a good mom, I would have been able to hold on to my babies inside my body longer.
But of course, things didn’t work out that way, and the girls were born at thirty-two weeks. The whole time, I kept thinking it was my fault. If my body was healthier, if my body had cooperated, if my body, etc., etc., etc.… I had nothing positive to say about my body. I was also physically devastated.
You’ve heard the stories—gestational diabetes, gallbladder problems, went from 170 to I can’t remember anymore. Still, it was like in the low hundreds. And in low hundreds, I mean like 110, 105, 115. I had been on bed rest for so long, my muscles were just a mess. I had a problem standing up very long. I had no energy whatsoever. I was pumping breast milk every three hours, twenty-four hours, seven days a week. I was so exhausted! Always exhausted! I was always stressed out because, in addition to that, I was waiting for news to find out how Andy was doing.
It was a nightmare. I’m sure I wasn’t the only mom going through this, but it felt like I was. I constantly called the NICU to see how Andy was doing because she had to stay longer than Emmi. When they were both at the NICU, I was constantly calling. Still, Andy was my biggest concern because Andy had developed pneumonia while Emmi learned to breathe, suck, and swallow. Andy had a large PDA, a hole in her heart. And we didn’t know whether or not she was going to have surgery, if the medication was going to close it. Were they going to transfer her to a children’s hospital in the middle of the night? We just had no way of knowing. And as it is, I suffer from anxiety because I come from an abusive background, so this was just overwhelming!
Every time we got a good piece of news with Andy, it was one step forward, two steps back. It felt like we were moving forward so very slowly. It felt like any day, we were going to get that call saying that we have lost our baby. It was the longest weeks of my life when the girls were in the NICU.
I have no chance to recover physically. And frankly, my mind was on the babies 24/7. I couldn’t stop thinking about them. I would dream about them. I would wake up in the middle of the night thinking about them. And if I woke up in the middle of the night thinking about them, I wondered if something had gone wrong, if it was a premonition. I would leap out of bed and call the NICU to make sure that they were doing okay.
Additionally, I was never able to connect with the other mothers in the NICU hospital. The other mothers never talked about what they were going through, and they were facing different challenges. I remember one of the moms had a micro-preemie. I believe she’d been born at twenty-three weeks. They had lost the twin, but this baby seemed to be making it through. And every time I went into the NICU and I saw these moms, what I saw was my fear reflected in their faces. We feared that our babies were not going to come home. Our fears that if our babies came home, they might be facing some very serious challenges.
I want to cry. I don’t know why… It’s so long ago, and my girls are doing so well. But, I remember just walking in there every day, and these moms, they made such a great show of denial. In retrospect, I realize it’s the only way they could get through that situation because it was an incredibly difficult situation. I guess, even back then, I could understand it. I just couldn’t do it. I didn’t have the energy to pretend that things were going to be okay.
I was so exhausted. And while I usually do a pretty decent job of keeping my emotions in check, when I’m that exhausted, I can’t do it. I felt terrible that I couldn’t be with my babies all the time. I was terrified that I would lose Andy. I was constantly crying. The only time I was happy was when I was in the NICU with the babies.
And even then, I felt pretty bad because I couldn’t reassure my babies that everything would be alright. I couldn’t do that. All I kept thinking was the doctor’s words, “The long-term prognosis is good.”
What about the short-term prognosis? Let me know what’s going on now. And I remember so many times I would ask the doctor, “What is the short-term prognosis?” His response was always the same, “The long-term prognosis is good.”
I was miserable. I was absolutely miserable! I remember the other NICU moms invited me to go crafting, and I tried. I tried to join them, but we were in the hospital. When I was in the hospital, I wanted to be with my babies. I didn’t want to be with other moms, and I didn’t want to be with other moms that could hope in a way that I couldn’t. And that had a lot to do with it. They clung to their hope, and that gave them the strength to get through it.
Whereas me, I hung on to my logic to try to get through it. Because I felt if I were prepared for what was coming, I would be better capable of handling it. Again, I’m the product of an abusive home. I like to know that things are coming or when they’re coming. But, of course, that was just not possible. I had to deal with that reality. It was completely out of control. Everything was out of my control.
One of the things that was really hard for me was that I was used to being extremely independent. I had always been very independent, and here I was, too weak to drive myself to the NICU. So, I had to depend on my husband, who was working the graveyard shift. I had to rely on my mother, who was still mad at me because I married my husband. Everyone was so busy with their own lives. I wasn’t working because I was in the Ph.D. program. My husband, as I said, was working nights. So, we didn’t have the money to hire a taxi every day. We just couldn’t do that.
So as a result, I felt like I wasn’t spending enough time with my babies. I always felt like that, and I felt tremendous guilt. When I tried to talk to some of my friends, they would look at me like, “You’ve always been able to pull yourself together. Why aren’t you pulling yourself together for this? You’ve always been so strong. Why aren’t you strong now?” The thing was, I was being strong. Because if I had not been strong, I would have been a puddle on the floor crying every minute of the day that I wasn’t with those babies.
And I suppose the other thing that made it hard for me was that, while my babies were in the NICU, my friends’ kids were getting ready to go to the sixth grade or middle school. Their children were so much older. They were past those baby years. So, I remember one of my closest friends saying things like, “I’ve forgotten that time.”
To this day, I don’t understand how that’s possible, but I’ve heard that from many moms—”I’ve forgotten the infant years. I’ve forgotten a lot about that.” My kids are fourteen. I still remember way too much (although, now that I think about it, I have a semi photographic memory, which might be part of my challenge).
It was an incredibly difficult time for me. I suppose the other thing that doesn’t help is that I have never been able to connect well with people. I remember taking a test, and my professor coming back and saying, “Well. No wonder you have difficulty connecting with others. You should be categorized as being in the spectrum. I would say you have Asperger’s.”
So, I’m sure that that was also part of the challenge. I don’t understand how other people think. So, my biggest support could have been those NICU moms, but I just couldn’t relate to them. I just couldn’t do it. It wasn’t them. It was me.
But there were some silver linings to the babies being in the NICU. They were able to overcome their challenges. Eventually, Emmi did learn to breathe, suck and swallow. It didn’t take her very long. Andy overcame her pneumonia, and that large PDA in her heart was closed almost entirely with medication. It did finally finish closing up by the time she was five.
In retrospect, I wish I would have had more confidence in myself and my husband that we would establish a visitation routine, that the NICU staff have their own routine. They were going to help us develop our family routine and help us create our family bond, which they did do. They were absolutely wonderful. Those nurses are godsent! Absolutely amazing!
I wish someone had told me to be patient with myself, patient with the hospital, patient with my husband, and patient with my family. Everyone did adjust to the realities that we had to face with our preemies. My husband and I adjusted to parenting preemies. The things that I thought were going to be so challenging, my ability to take care of my babies, was actually really easy because the nurses had taught me how to bathe a preemie, how to feed my preemies, how to do diaper changes on my preemies, how to bond with my preemies.
But if you’re new to the preemie game, what I’m going to say to you is allow others to help you, let others take care of you. Most of all, allow yourself to become part of a support group. If there was one regret about that period in my life, it was that I didn’t try hard enough to become part of the NICU mom support group. I really wish I had done that. If you have that opportunity, take advantage of it! They’re a great resource. They will help you get through it. They will help you feel better. At the very least, you’ll know there’s somebody else going through the same thing as you, and that sometimes gets us through the night.
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