Don’t touch me

“Don’t touch me” was my initial thought towards my husband as we prepared to pack up and leave the hospital with our first child. He was relieved we were being discharged from the NICU, I feared one small hug from my husband would result in a loss of control of all of the emotions I was trying to hold in. 

Mothers with birth trauma stories spread widely in a spectrum. While I never had a long NICU stay, emergency C-Section trauma, or loss of a child I certainly had my very own PTSD birth trauma story. And, to me it was a confusing one.

When we become advocates to a cause there is typically a reason, a story. Sometimes just a moment, or single experience or even events in our whole life.

At the time, I was a Child and Family Therapist in Private Practice. I was excited to be a mom, less excited about the birth process. I felt fully confident in the Obstetrician I chose and most importantly the hospital I was to deliver at. I love to be in control, most people with Anxiety do, as it keeps our anxiety at a manageable level. Did you know that Perinatal Anxiety and Obsessive Compulsive Disorder is more common (and undiagnosed) than Postpartum Depression? In pregnancy 10.6% of women experience some sort of severe anxiety, meaning 1 in 10 women will experience some sort of anxiety (Adewuya, Ola, Aloba & Mapayi, 2006).

During all of my prenatal visits I had no issues or causes for concern. I was 9 days overdue, and emotionally done with all the text messages and the “you have the baby yet?” questions. I turned my phone off for almost 24 hours to give myself a break. This was the first grandchild on both sides so everyone was so excited. 9 days overdue, my parents were preparing to fly out and land late that night.

Once labor started everything was going well and I was surprised how “normal” the contractions felt. My water hadn’t broke yet but my contractions were right where they should be when we arrived at the hospital.

Most of my labor experience was pretty fuzzy to me. I remember feeling like this was a big deal but the nurses didn’t totally act this way (because to them, it is another day at the office and I wasn’t high risk). I remember loving my first nurse who was so kind, supportive and nurturing and being so mad that her shift was ending (1 hour before I had my son…which we didn’t know at the time). I was seen by the hospital OB and my offices OB. It was a busy night and there were 3 other women that were in transition or pushing at the time. (They thought since I was a first time mom I would have gone much longer than I did.)

They were not pushy about intervention, while I did chose for a “light” epidural. (Meaning they didn’t do the dose they normally would have but I could still push the button. It took the edge off but I could feel everything.) They waited as long as they could to break my water to let me continue with the “pillow” of the amniotic fluid to help things out. The hospital OB (who was male and seemed like he really didn’t like his job) came in and quickly said it was time to break my water. He really didn’t say much to me, which annoyed me. After he broke my water he walked over to my nurse and talked to her and left. A moment later my nurse came over and said that my son pooped and probably a while ago. This was not meconium in amniotic fluid, this was straight meconium no clear fluid what so ever. She kindly explained that his vitals are totally fine and that neonatal would be present for his birth and that MY office OB would deliver him. (I think this is where I turned into myself emotionally and thus began my journey as a of robot self).

My husband and I really didn’t know what to expect after this. I told my nurse only 15 minutes after they broke my water that I felt like I needed to push. You could tell she kind of doubted me but checked me anyways and well… I was right!

One thing that surprised me was that when you start pushing, your nurse is helping and your OB isn’t called in until the last minute. I understand now why (as it could take a while) and a nurse is completely capable of this and really becomes a rock to rely on in this moment. I was so thankful for her. As we worked on pushing she then told me to stop. She joked that she would get in trouble if she delivered a baby and she called my OB. Thats when we found out she was in her car going back home (she thought I had much longer) and quickly turned around. They prepped the room (what a perfectly orchestrated event). The extra nurses came in, tables came out, half of my bed came off, sterile bowls and tools… WOW! Neonatal shows up with all their gear. Still no OB!

I was at the point of no return, I couldn’t NOT push. She runs in in all her winter gear (hat, gloves, puffy jacket, snow boots) and the nurse rips off her gloves and puts the gown on her (over the rest of her winter gear! hahaha!). MOMENTS after she sat down he was born! When he came out she kept him upside down and didn’t move him much and they immediately brought him to the neonatal team. No seeing my baby, just being told he’s “beautiful!” (would they ever say… thats an ugly baby? He was also covered in green slime so … not so beautiful).

My husband wasn’t sure what to do at this point… stay with me or go to him? My nurse was great and told him to go there and she would stay with me. She started to explain what they were doing to him. They had to suck out all the meconium and then observe his breathing.

This “big” guy was 8lbs 8oz BUT over 21.75 in long! He was SO long and had the biggest feet!!

We didn’t get the “on moms chest” or even “getting weighed” photo. About 25 min after he was born and they liked his breathing rate they gave him to my husband. We were so relieved! Neonatal left!

Things quieted down while still in the labor and delivery room. I was exhausted and relieved that he was just relaxing on my chest. Every once in a while the nurse would come check us both and then go back to paperwork and things. Maybe an hour or so after everyone left she called neonatal back for a consult because he was breathing quickly. Picture panting dog. She was cool, calm and collected. When they showed up she stayed by my side while they took him over to evaluate him. They determined that since this was his only issue they would come to Recovery on a timed schedule to check on him and NICU admission wasn’t warranted. Again, SO relieved but still sad he needed to be observed.

Leaving Labor and Delivery felt like such a big accomplishment. I felt like I left some of my worries in that room. My nurse walked us over in the weary hours of the morning. My recovery nurse was waiting for me. We put the baby in the bassinet and she escorted me to the bathroom for the ceremonial “we just met let me watch you pee in to this plastic bowl”. My delivery nurse filled her in on the baby and told her neonatal approved for him to stay with me. THEY believed it would be the best fit to stay with mom for skin to skin, etc.

Moments after I finally settled into my bed my recovery nurse comes in reporting she is no longer comfortable with a “fragile” baby staying here. She unlocks the wheels on his bassinet and asks if the dad wants to follow. My husband (up nearly 24hrs) bewildered followed as I get out of bed to watch him and my son leaving me. From my husbands report she went into the NICU with him insisting he be admitted and she refused to let him stay in recovery. He isn’t sure why they agreed completely.

When my recovery nurse came back I was back in bed in a pure state of disbelief. I again turned inward emotionally and really felt like a shell. She only says to me “why don’t you get some rest, you’ve had a long night”. My husband then returned just as confused saying he was admitted and they told him to also get some rest. Okay? I nodded off for maybe 1-2 hours until I couldn’t just lay there anymore. By the time I woke back up a new nurse was now on shift and was kinder. I told her I wanted to see my baby and she got me a wheel chair and my husband and I left. Thus begins the most overwhelming, upsetting and confusing 3 days of my life!

I remember entering his NICU room. (They had private suites because they were rebuilding the NICU so they had normal size hospital rooms for every baby… it became a life saver). It was terrifying. All of the leads, the IV etc. I was so sad. He looked so sad and weak. It was painful. I remember thinking that all of “this” happening to him, when he was alone.

When we came in he was screaming. He had a pacifier and the “sugar water” open next to him. I remember not knowing if I was allowed to touch him. WAS he really sick? I thought he wasn’t?! How much time has passed since he was taken? I was so disoriented. I don’t think I could remember at this point. Is he dying?

That first day was such a blur. My parents arrived to our house the night before and knew he was born but he didn’t have the heart to tell anyone anything more. We didn’t know anything at this point. Once they found out they had so many questions and all I wanted to do was turn my phone off.

The day nurse was my only saving grace. We had the SAME day nurse everyday. Thank goodness. While I had no ability to ask her questions that I really had (because was afraid of the answers) it was such a comfort to me to see her daily. I looked forward to shift change.

Now, for anyone who has had a child or baby in the NICU will know, there are a lot of leads and BEEPS. He was constantly pulling them off or kicking them off causing alarms. No matter if it were the first or the 8th of the day your stomach and heart sinks. Is this because he is REALLY sick or because he’s moving so much? My brain couldn’t decide, I just couldn’t process.

Because he had a private room it came with a rocking chair and the sleep away bed. Once I entered his NICU room I only left once. That one time was to be discharged that evening from recovery because I refused to go back. Some sense in me was there on a basic level that I was not leaving. I slept and lived in the rocking chair. I still remember the first time I was allowed to hold him. It was terrifying. I was afraid I would loose him, but too afraid to ask such a question.

I remember the first time lactation came in. It was terrible. You could tell I was just another person on her list. She came in, asked if I tried to breastfeed or pump yet. I said no, but wanted to say “no, because I have barely held him, don’t know how he is doing, and I’m completely terrified of this day”. She promptly calls the nurse in, they do a heel prick on the baby (which makes him scream bloody murder) and then she picks him up and tries to get him to breastfeed on me. This was my first breastfeeding experience. My baby wouldn’t stop screaming the whole time and shook his head the whole time trying to latch. I will always remember this cry. It was the same every. single. time. Tears running down his face, lactation consultant forcing him on me. None of this felt or normal or natural. They were unfazed, I was digging deeper into myself, hiding.

 We went through phases where they didn’t like tests that came back and ordered more to him. Then they would say he was doing just fine and all levels were normal.

We had chest X-Rays, lots of blood draws, and respiratory sessions.

Once, I remember they talked about how if his numbers didn’t come up they next step is a spinal tap. Terrifying. I wasn’t aware that with newborns they don’t mess around, they go immediately to a spinal tap because a newborns condition can change quickly. I was just thinking about how if an adult gets a spinal tap its BAD and they have run out of options. Further into myself I went. I had no ability to ask WHY a possible spinal tap, I was too afraid.

When I slept I either dreamed of the alarm from leads, my son crying or they were actually happening. I would wake up in a panic every time. I was living in my own nightmare. Then, that night too I heard a gag and a cough. I wake my husband up and his intuition kicked in and he rushed over and rolled him onto his side. He spit up a massive amount a dark fluid he surely would have choked on if we were there.

I remember when my parents came to see us there, it was so bittersweet. We were all sad but wouldn’t talk about it. I remember my mom holding him but it wasn’t this joyous moment. We were all so confused.

At the end of Day 2 after my parents left I remember thinking that other than checking on him and making sure his levels were okay they weren’t doing any real interventions. My brain started to lift out of the fog and I began to ask the nurse more questions. While she didn’t really have any answers for me I asked about when we would be able to go home and her only real answer was that he needed to be off the IV to go home. Wait? Is that all? Is this why we are still here?

I waited for our lovely day nurse to return in the morning and we talked. Fighting back tears I put on a brave face to ask when we could go home and if there was anything we could do to make that happen.

Day 3 became an overwhelming and confusing day. During rounds I got the physician to agree to reduce his IV. Every 2 hours they would reduce it more and more and make sure he would tolerate it. They said Lactation had to come back in and give us some support. They also wanted to do one more chest X-Ray and a respiratory therapy treatment. If all those things were to happen (and all the typical newborn screening and discharge checklist) we could go home.

In some moments on Day 3 I felt like I still had some fight in me. Then at one point his oxygen started to really drop and we couldn’t figure out why. Our nurse mentioned they won’t discharge him today if this keeps happening. To want something to be better so bad but not really be able to do a damn thing about it is the worst feeling ever. We had no control in how much oxygen he was receiving.  I felt so defeated. They called in Respiratory and had him under this plastic helmet and the issue didn’t happen again for the rest of the day.

As he was being weaned from his IV, lactation came again. Unfortunately, lactation was the worst service we received. All other medical professionals handled themselves better than all 3 of the different lactation consultants I saw. I was shocked and disheartened. Again, they pricked his heel and unleashed him uncontrollably crying and flailing completely rejecting latching on and shaking his head. They recommended if we are discharged to make many appointments with them to get this under control. This was the absolute LAST thing I wanted to do (and didn’t do).

As the day went on I pumped and bottle fed him and his weight gain was fine. Towards the end of the day my nurse told me “now thats he’s coming off IV please remember he may be extra hungry tonight, his belly was constantly full and now it won’t be.” I was so MAD. Then it occurred to me. How can I try to breastfeed a baby that has no hunger? How can I have him have any true interest in latching on when it doesn’t impact his stomach at all. HOW was this not the first thing someone said to me when we tried to breastfeed or bottle feed him?! (How did I not think of it myself?) Now, more than ever I wanted to leave. I felt like I had no say or control over what was happening with a child I had just met but really had no chance of getting to know. I felt like our first couple days were robbed from us, but why?

As discharge continued to be a possible outcome my anxiety skyrocketed. I remember my heart beating in my throat. I was so scared we may have to stay. Discharge paperwork started showing up and we had him dressed. They came in and checked him in his carseat and we waited some more for the true green light. 

When she came in and said we were good to go, my husband who was so strong through this all leaned in to hug me. I stopped him by putting up a hand as a gesture of “Don’t touch me”. The only protection I had to not completely melt in emotional sobbing mess was my skin. I literally felt like a pool of emotions. One hug would cause a giant leak. THEY WILL NOT SEE ME CRY. He quickly backed away, and I felt bad but I couldn’t be touched. Not then. Not here. Walking out of the maternity / NICU wing felt wonderful. I hadn’t left these doors since I got there now 4 days before. They asked if we needed help and we said no. I honestly wanted no one following us. When we pulled away I had this panic like they were going to call us and tell us to come back. Like our nightmare wouldn’t be over. I actually turned around and looked back a couple times like someone might be coming for us. I never have ever had such a sensation.

Now, here is the real head scratcher. On my sons discharge paperwork their reason for admitting him was “cautionary and preventative”. There was NO treatment. “NO REASON why ANY of it happened.” (my words not theirs). There was NO follow up instructions, just to follow up with his pediatrician for normal well visits. Did I wish to have a sick child? No. But did I think I had one? Absolutely. 

One massive issue in my NICI experience is that my feelings and my husbands were not considered in this whole process. I don’t believe my experience was what every parent has. I had some wonderful staff and some I wish weren’t apart of our care. My biggest take away was feeling as if the mental and emotional wellbeing of the parent was not something they were trained to be attentive to. 

As for most moms, the story does not end here. I don’t just mean the corny “it was just the beginning” type of idea. It was the beginning of me processing and understanding all that happened to us and why it impacted me so greatly. I became obsessed about talked about some of my experience. Not many of my friends had the same experience as me. I was deeply jealous of their ability for their own body to have recovery (mine was considered over not even 24 hours after giving birth… my own decision). I was jealous and mad when I saw friends post their pictures in their hospital room holding their sleeping babies. I wanted my time back, my memories back. More than that I wanted answers to why I had to have this experience. I am not talking about being in the NICU as a  room or a medical service. Why did it have to be so traumatizing to moms (and dads)?

Before I ever found Maternal Mental Health / Perinatal Mental Health I knew moms and dads deserved more while having a child in the NICU. I knew moms (and dads) deserved better when going to prenatal appointments and then in labor. I knew parents deserved better bringing in their newborns and infants to pediatricians. I finally came out of hiding emotionally within and realized. 

I DESERVED BETTER.