The Thing No One Tells You About Having a Preemie

13 Jul

I didn’t know how lucky I was to have a normal first pregnancy.

When I found out I was pregnant with my second child, I just assumed it would go well. I made sure I ate my fruits and vegetables, eliminated caffeine and took my vitamins. But for some reason, something was always just “off” about my second pregnancy. I felt less energetic, overall unwell and more anxious.

When my blood pressure went up around 20 weeks, I didn’t really think a lot about it. The doctor put me on some medicine and followed me more closely. But something had already started in my body that no one could stop. Once the protein started showing up in my urine, the swelling set in, my platelets started to crash and my blood pressure wouldn’t come down. I was hospitalized at 24 weeks with severe preeclampsia and six very traumatic, stressful days later, my second child was forced silently into the world. Way too soon.

Everett and I found ourselves back at CHKD. We knew all about oncology, but we didn’t know a thing about preemies. We were shocked at how tiny everything was, especially the precious fingers and toes on our red, transparent…baby? That was our baby?

Abby was a few days old here.

Abby was a few days old here.

I speak often on the kid’s issues and rarely talk about mine. No one told me how I would feel. That having a child four months early would send me into mourning for the loss of the pregnancy itself. In the hospital, every time I heard the music signal a new baby was born, it sounded more like the scary nursery music in a horror movie. I was recovering from a c-section with a baby fighting for her one-pound life in the NICU and hearing other moms give birth to healthy babies. Those stupid, lucky other mothers.

I felt like a failure. I’d had two children; the first got cancer and now the second one was probably going to die because I couldn’t hold up my end of the bargain. I’d forced our whole family back into the world of sickness and worry. The guilt was all-encompassing.

Sadness is normal; of course you’re going to be sad you left the hospital with an empty carseat. I could try to hide sadness by crying in the shower or in the car on the way to and from visiting Abby.

The other emotion I didn’t foresee was the jealousy. Seeing other pregnant women was incredibly difficult. It made me angry that they could have healthy pregnancies but I couldn’t. I had to bite my tongue when I heard women complain about being tired, swollen or couldn’t sleep well at night anymore. I would’ve given anything to be in their shoes instead of my own.  Seeing my friends announce their pregnancies on Facebook with cute pictures was torture. The absolute worst was encountering a mother smoking in her car with her perfectly healthy kids in the back seat. My baby was on a ventilator and would probably have asthma, my other child got cancer at the age of one. Here she was freely exposing her kids to secondhand smoke and cancer. Oh man, I flashed red; I wanted to remove my earrings, walk over and ask her to step outside.

Whew, got myself all worked up on that one again.

In all honestly, what helps the most is time. It gives you perspective and compassion. Time allows for gradual healing of very raw wounds. The intensity of the emotions wears off, but the feelings take a long time to go away. In fact, I’ll let you know when I know. Until then, if you know someone who’s have a premature baby recently, here’s some advice I can pass along.

  • Give them space to mourn.
  • Let them talk about their feelings, whatever they are.
  • Don’t try to force the bright side of things, like remarking on how the baby weight comes off quicker at 24 weeks vs. 40 weeks.
  • Never suggest they pack up their maternity clothes until they suggest it themselves. Then you can help.
  • Make sure to congratulate them on the birth of their baby, because even though it’s early, it still happened!
  • Understand when they RSVP “no”, especially baby showers or events that will have pregnant women or lots of babies.
  • Don’t compare your full-term baby around the same age to their baby. It’s not the same.

Since no one told me, I hope it helps that I’m telling you.

4 thoughts on “The Thing No One Tells You About Having a Preemie

  1. Hi Cousin, love your posts. I have enjoyed Abby because my John was 7 weeks early. I was not leaving him in the hospital and the Dr. Knew it ! He was large, 5lbs.4 oz. granny called him “the little miracle,” I think she would pass the title on to Aby now. Not only is she a miracle, but she is such a joy.

    John just turned 32 yesterday. We took him home and kept him isolated. The best advice my Dr. Gave me was “he can catch everything at church, except religion!” The older children were good about stimulating him. He did not go to the grocery store until he was six months old. That was an eye opener for me. The look of awe on his face when he looked up and saw banners, etc., made me realize what a child really saw. I learned quickly not to take anything for granted. I have a lot of stories to tell, but I won’t.

    John is my largest child, 6’3 and also the smartest (please don’t tell his siblings). So, they can’t tell you a lot because they really don’t know. Seize the moment and enjoy life! You guys deserve it!

  2. “Make sure to congratulate them on the birth of their baby, because even though it’s early, it still happened!”

    Be sensitive and play this by ear, I would suggest. Personally, congratulations were not good for me, though I knew people meant well by them.

    Because the way I saw it, my children’s birth was, as a thing that happened, a bad thing. I didn’t want to be happy about it. I would have undone it if I could. I wanted to argue with the congratulator: do you not realize being out of the womb is risking their health and their lives?

    I didn’t argue, of course, and I tried to take the spirit that people intended. Sometimes I knew part of what they meant was “do treasure this day of meeting your children, even not knowing whether it tears your heart out in the end.” But some other people did feel like they were congratulating with a “look on the bright side, at least they’re here” message, or with no particular intent at all, congratulation is just what you do at a birth, and those made me grind my teeth.

    • That’s an excellent point. For me, no one congratulated me at all and it made me sad because it felt like they were confirming they thought she wasn’t going to make it. I don’t mean the usual balloons and flowers type of congrats, but more of a heartfelt acknowledgement of the birth to give hope. Thanks for the different perspective. I hope your little one is doing well!

      • They are great kids, thank you. There have been rough spots but I’m very thankful for how it’s all turned out.

        Thinking about it… a congratulation at a birth is an expression of sympathy with the emotions of a birth, generally positive (but the congratulator is wise to leave room for mixed emotions to exist). At a high-risk birth, if someone communicates sympathy with *all* of the feelings around the birth, that is a very good thing. The same basic impulse of human sympathy that’s for congratulation, being applied with emotional awareness. I think anyone who’s being emotionally ‘there’ in what they’re saying will do okay, it’s when people don’t engage they they’ll say nothing meaningful or something canned and inappropriate.

        If nobody said anything at all that would have made me feel terribly dismissed, like it’s over, it’s done with, get on with things. I’m sorry you had that from people.

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