I don’t know about other parents of preemie babies, and I’m not even sure I can speak for my husband, but when my son was born so early, I believe I went through the five stages of grief.
I realize that things could have been worse for me and my family. I could have lost my son, and possibly lost my life. I understand that, and while it may seem selfish of me, knowing “it could be worse” or seeing that other parents in the NICU had it worse actually made me feel worse, not more grateful.
I felt guilty for feeling sad. I felt like an awful person for being sad that my son was alive and actually doing very well compared to other babies. I felt ungrateful every time my heart ached and I cried, because my son got extubated relatively quickly, he didn’t have a tracheotomy, he didn’t have a brain bleed, he didn’t have any cardiovascular problems. Relatively/comparatively speaking, he was fine.
Yet still, I grieved, and mourned things lost to us as a family, and to me as a mother. I grieved, and now looking back, I think it would have been odd if I hadn’t.
Now, I am incredibly thankful for my son’s health and for how wonderfully he did while in the NICU (excluding one scare). At the time though, how on earth could I possibly be expected to be happy that my son was in the hospital, requiring 24/7 attention from medical professionals to stay alive?
So yes, I grieved.
I think when I went in to labor, part of me knew that I was in active labor, having contractions and not just cramps. I was in denial. When my doctor told me I was in labor and had to have an emergency c-section, I was in denial. I was in shock. I felt like I was dreaming. I couldn’t be in labor, I had just reached the third trimester, I had finally taken a picture of my big belly where I looked pregnant and not just like I’d eaten one too many bowls of fettuccine alfredo. I was supposed to be pregnant for another 11 weeks, there was no way I was in labor.
Even after my son was born, I woke up feeling like it had all been a dream (probably mostly because of the drugs, if I’m being honest). When the transportation team brought Kaden to my room so I could see him and say goodbye before they took him to another hospital, I couldn’t wrap my head around the fact that the tiny human under all the cords and wires and monitors had been in that big belly of mine just an hour prior. When they took him away, I shed a few tears, but I truthfully didn’t feel anything. I was numb, I was in shock, I was in denial.
This wasn’t real, of that I was sure.
Since my husband and I only live 7 minutes from the hospital, and we have a puppy that had been home alone all day, I made him go home the night after our son was born so he could sleep. There was no need for him to stay with me on the uncomfortable hospital couch/cot/”bed” when we had a perfectly comfortable bed right down the street.
He went home as I asked, and around 4 o’clock in the morning, my veil of denial wavered as the weight of what had happened sunk down on me. The nurses had given me a paper tape measure with Kaden’s length marked so I could see how long he was, since he wasn’t with me. I knew he was 15.35 inches long, but that was the first time I picked up the tape measure and unfolded it to actually see how long he was.
I don’t know what it was about seeing the tape measure with his length and weight written down, but I lost it. I cried to the point were you’re sobbing so hard you can’t catch your breath and your chest aches. I wanted the denial, the numbness, the nothing back. I can’t say how long I cried like that, but somehow I shoved all of my pain back down and pulled my veil of “it’s not real” back over my eyes, because denial was so much easier than the truth.
I struggled a lot with being angry, jealous, and bitter after Kaden was born. I felt like I had been robbed of something that should have been so special, and instead it was turning in to a nightmare. It wasn’t supposed to happen the way it did, and it wasn’t fair.
My sister and I were both pregnant at the same time. In fact, our due dates were only four days apart, so we were experiencing all the things associated with pregnancy at pretty much the exact same time. It was wonderful, and I loved being able to share that with my sister, especially because we live in different states. We weren’t physically together, but we were going through our pregnancies together, regardless.
When my son came early, that all was taken away from me.
I had planned on taking maternity pictures and birth pictures. I didn’t get to. My sister-in-law was planning a baby shower for me, that I didn’t get to have.
When my sister complained about being uncomfortable because of her pregnancy, and just wanting to have her baby already, I was so mad at her. I can remember one time specifically that I snapped at her and told her that she in fact did not want to have her baby already, because I had, and it sucked.
Logically, I knew she didn’t actually mean that she wished she went in to labor early like I did, and she was just complaining because that’s what pregnant women do when they’re in the homestretch of their pregnancies, but I was furious at her for even saying such a thing. Would I have been making the same complaints if I was carrying a 5 pound baby directly on my bladder, and having my insides being used as a punching bag? Of course I would have. But grief isn’t logical, and so instead, I was angry.
I was angry when people told me to take advantage of Kaden being in the NICU by sleeping and getting the house ready for him to come home. I was resentful of any obligation that took me away from the hospital, because how dare these people think I wanted to do anything other than stare at my baby in his isolate bed and wait for it to be time to change his diaper? Didn’t they know they were robbing me of a chance to touch my kid? DIdn’t they care? How dare they!?
When the nurses wouldn’t let me hold my baby, I sulked in my recliner, counting down the minutes until 12, 3, 6, or 9 when I could reach in and take his temperature. At 6:45 when I was kicked out of the NICU for shift change, I walked out bitterly and hovered at the NICU doors until 7:30, when I was allowed back inside.
I was angry at my body for betraying me. I was mad at my doctors and at myself for not knowing that I have a bit of a heart shape to my uterus, because what if that’s why I went in to labor early? I was angry that there was no answer as to why Kaden came early, and that there never would be one. Medicine is supposed to be so advanced and wonderful, so why couldn’t we figure out what was wrong with me?
I was angry for a long time, because this wasn’t how things were supposed to happen. I was never supposed to be a preemie mommy. I was never supposed to have my son stay in the NICU. This was never supposed to happen, and it wasn’t fair that it had.
In the midst of all of the anger, I often wondered “What if…?”. Everyone told me not to wonder, because it wasn’t worth the agony I was putting myself through, but I couldn’t help but think about where it all had gone wrong, and what I could have or should have done differently to prevent it.
What if I found out that I have a bicornuate uterus sooner? What if I had gone to the doctor the day before, when I first started feeling the
cramps contractions? What could I have done differently? What should I have changed? How could I have stopped this from happening?
I lived in the land of “What if…?” on and off for the entire duration of Kaden’s NICU stay. Even today, I still sometimes find myself getting pulled back, but I try to make it constructive and think “What can I do in the future, if I have another baby?”
I haven’t talked about it much with my family and friends, but depression and I have actually been well acquainted with one another for a while now. I would say the two of us have a functionally dysfunctional relationship, so to speak.
I’ve suspected I had at least mild depression several years back, and two or three years ago, my doctor agreed with me. I wasn’t taking any medication because it wasn’t that bad, and I didn’t want to start a medicine that I would have to stop when my husband and I started trying for a baby.
When Kaden was born, my depression reared its ugly head, and it came in full force. No more of this mild nonsense, this was debilitating.
I was never suicidal, and rather than staying in my own bed I wanted to be in Kaden’s room with him all the time. I know that the depression of grief is not the same as the mental illness, but it didn’t mean that this trauma induced grief-depression was any less real and painful.
I cried all the time. I wasn’t excited about anything. I withdrew into myself and I mourned.
I can’t say that I woke up one day and had reached the acceptance stage of my grieving process, it seemed to happen gradually. I was still sad about my situation, but I knew that I had to make the best out of what I had, because this was my new normal.
I went to support group meetings at my hospital, and joined their Facebook page. My husband and I went to counseling with a therapist. I started looking forward to things that we could do once my son was discharged, and looked forward to the milestones we would hit while in the NICU.
My son’s birth didn’t happen the way I wanted, but it happened, and I could either make the most of it, or I could dwell on it for the rest of my life.
I decided to be more active in the support group (though I haven’t been able to go to several of the meetings recently) and to start this blog to help other parents of preemie babies, or babies that were born sick and sent to the NICU know that what they’re feeling is okay.
The NICU has its own kind of “normal” which is that it’s totally not “normal”. We celebrate different milestones, and that’s okay. Our babies are small but mighty. We’re the parents of NICU Warriors, and while it’s painful in the moment, it’s actually quite a beautiful thing.