preemie babies: they are… and they aren’t.

May 9, 2008

illness, NICU nights

I felt myself holding back tears at dinner. We went out tonight with a couple whose child is in the NICU. I wanted to show them how much we understood without making it about us and what we’d been through. I wanted them to know we wouldn’t say the dumb things people tend to say when you have a child in the NICU, horror stories by well-meaning parents. It didn’t matter that we’d gone through it ourselves and understood the pity with which people greet you. Because it wasn’t happening to us. And I wanted them to know that I knew that. That I wasn’t the kind of mother to go on and on about what we’d gone through. I wanted to ease their minds, to let them know they weren’t alone, that it gets easier. And that it gets harder… the way it does for any parent.

As we listened to their story, celebrating the fact that their baby finished an entire bottle without d-stat’ing or having any A’s or B’s, I remembered it all so well. All those moments other people never understood, checking charts, and celebrating double chins, and lower doses of oxygen. I remembered the pumping room at the hospital, the conversations I overheard through the curtains. All the mothers pumped at around the same time, when the nurses were changing shifts, and due to hippa, all parents had to leave, so we didn’t overhear one nurse filling in the next nurse about someone else’s kid. So I read the same magazine as I had for weeks, there in the room, in the spot where the curtain wasn’t falling down, and I listened to all the details I wasn’t supposed to hear anyway, through a curtain in the pump room. A mother bragging that her preemie child had been spoiled by her. That the nurses said she was holding her child too much because when she had to leave, the child was inconsolable. It made her feel like a mother. She didn’t say as much to the person on the other end of her cell phone. She didn’t have to. I knew that feeling well.

It doesn’t go away. I remember all the time, our time there. I remember the names of all the nurses. I remember "firing" one nurse. Or rather, voicing our concern and putting in a request for Lori, a nurse we loved. We speak with her still. I told the parents tonight this, that they’ll make wonderful connections during all they’re going through. It’s hard not to. I hope they consider us as people they can turn to. I just want to ease their minds, to let them know, as alone as they feel in those half-hour drives home from the NICU each night, they are… and they aren’t.

26 Responses to “preemie babies: they are… and they aren’t.”

  1. heidi Says:

    Great advice. I am still friends with the NICU mom's I met while my preemie was there. It seems like it was just a minute ago… then you turn around & 4 years have passed. *sigh*

    Reply

  2. Andria and Co. Says:

    Since I've decided to stay home with Blake, the one thing I miss are the connections I made in the NICU. Although, when going through all the infertility stuff, seeing the babies made it hard.
    Oh, and it's desaturations… not sure where the "stat" came in. ;)

    Reply

  3. anna lee Says:

    I'm glad you could share your story to ease some other parent's minds. :-)

    Reply

  4. dulce Says:

    you are such a wonderful friend

    Reply

  5. mommy2 Says:

    Interesting topic. It is always interesting to hear the parents perspective. I am a NICU nurse and took care of your beans a few times, though we never met or spoke. I remember telling Phil about little Lucas finishing his bottle in just 15 minutes (which I am guessing by his reaction was a first) and hearing the pride in his voice as he celebrated that milestone. I always mention to parents that it is a good thing to talk with other parents going through it currently and encourage the Parent University classes we have especially when we have graduate parents in. No one can understand what you go through, even when they have gone through it before, but they are miles ahead of someone who has never been there.

    I am always thrilled to see pictures and read updates on the kiddos, because I like to think I had a hand in how well they are doing. People often ask how I can work in such a "depressing" place, but honestly, I find it to be one of the most joyous places. While, unfortunately we are unable to save every baby, we do get to see most of them go home. To see a parent, whom you have watched shed so many tears and voice so many concerns, take that baby home, that is the greatest joy.

    In the interest of keeping things accurate, it is desat'ing, as in desaturating, not d-stat'ing, though every parent makes that mistake. I am sure it is our fault for using medical jargon. Glad to hear you are supporting new NICU parents in their journey. Continued blessings to you and your family.

    Reply

  6. Sarah Says:

    Not that it really matters in this context but it's HIPAA: Health Insurance Portability and Accountability Act

    Reply

  7. Aimee Says:

    i read your prior post to where your book events are going to be at. My husband and I are hoping to be at one of your Chicago events as that is the closest location to us. I saw you're also speaking at the Westin St. Francis in San Francisco. Because I know you're a huge foodie – hopefully you're husband will joing you on a nice romantic meal at Michael Mina's restaurant in the hotel. It's my favorite place to eat in San Fran, and I'm sure you'll enjoy it if you've never been.

    As for the information on the babies I'm glad your beans are healthy and happy as our hearts were with you as they were born and spending nights and days in the NICU. As a soon to be mother, I can't imagine the thoughts that you had, but appreciate the way you have opened up your life and experiences and feelings as they have helped me prepare for my new journey in life. Thank you is all I can say for what you have offered us in the blog world.

    FROM STEPHANIE- Thank you for such a sweet note! Funny you mention Michael Mina as when we went to Vegas on our ONLY vacation together as a couple(can you believe?) Phil's friend introduced us to the most gracious and nice man at Bellagio's Michael Mina. He is the Sommolier. We sampled everything with wine pairings and drooled at the lobster pot pie ordered by the couple next to us.

    Reply

  8. Lori Says:

    I enjoyed so much taking care of Lucas and Abigail and chatting with you guys and getting to know you while you were here, those kiddos are gorgeous :)

    Reply

  9. Mari Says:

    I think parents going through such a difficult time appreciate whatever wisdom and empathy you have to share with them. It really does help to hear that from others who can relate to what you're going through.

    Also, what a sweet message from mommy2. Nurses have my utmost respect.

    Reply

  10. Jocelyn Says:

    I love this post for its honesty. I love it for the fact that you so clearly showed the experience of the NICU. My niece was born 3 and half months premature (she is now 5 and wonderful!) and I experienced all of this with my sister. Enjoy your little beans…and keep those pictures coming!

    Can't wait to read Moose!

    best wishes,
    Jocelyn

    Reply

  11. Jessica Says:

    I was an infertility patient and I remember sitting in the waiting room while all these folks walked in to show the Doctors their new babies. It was heartbreaking for me and all the other women who wanted nothing more than to know the feeling of having their own child in their arms,looking up at them with a love that knows no bounds. I applaud you for keeping it about them. Sometimes it is hard to do when we are taken back to moments in our lives that are so painful it seems sometimes like no time has passed.

    Reply

  12. ATX Says:

    Thank you for this. I read this as my sweet potato sits in my lap and is trying to make a B noise now and spitting and laughing while looking up at me for approval. Precious. I already appreciate him to no end but this is good to read to remind myself what I have.

    What was wrong with the nurse you 'fired'? It's a good thing you were able to be heard regarding the request and got someone who you liked and trusted. We were at Seton and had such a wonderful experience there. Our 'Lori' was named 'Flor' (but was not NICU). She was truly amazing.

    Reply

  13. Cat Says:

    We were lucky enough to have our baby declared full-term even though he arrived early. He checked out OK and was breathing on his own (which was the main concern).

    I cannot fathom going through what parents of real preemies must endure.

    You & Phil are motivating and encourage me to be a better parent.

    Reply

  14. Andrea Says:

    This is such a touching post. I hope your friends read it and know that they are lucky to have you and Phil in their corner. It's so wonderful to hear about how well Lucas and Abigail are doing, and as you said, I'm sure you remember all the time what you all went through, but it must be so amazing to see how far they've come.

    Reply

  15. azizeh Says:

    Did you see Martha Stewart today? She was honoring nurses, and there was a story of twins born at 26 weeks. The couple showed up to honor the NICU nurses. Very sweet.

    Reply

  16. Cynda Says:

    That was a beautiful post Stephanie. I'm sure they will know. You have a way of putting your thoughts and emotions into words, that they'll understand. :)

    Reply

  17. nicole Says:

    gosh, i remember it all too well also. it's hard not to go there. to that place that you remember and just spill everything you were feeling. you want to reach out and hug them and say you know what every single minute is like in that nicu. but know this– they now know they have you and they can always call you. if they need that, they will tell you. bravo to you.

    Reply

  18. Robin Says:

    I am one of the clerks in the NICU where Lucas and Abigal stayed. I love seeing pictures of the "beans" and watching them grow. They are beautiful. You've done a wonderful job with them.

    Reply

  19. enc Says:

    I won't pretend to know anything about the pain you all must have felt, but I will say I'm sorry. It takes a lot of strength to be a parent.

    Reply

  20. MandyC Says:

    Ahhhh the NICU. We were there for 103 days with my daughter, Chloe. It is a bitter-sweet place. I made the best friend there….

    Reply

  21. finance girl Says:

    I visited your site this last week, and looked at your photos. Unfortunately, your photos added themselves to my Windows Vista sidebar.

    I thus had to go to the menu to remove them; you should consider changing the properties of your photo page so they don't add themselves to your readers Vista sidebar.

    Creepy.

    FROM SK: How the heck do I go about doing that? Creepy is right.

    Reply

  22. HelenSparkles Says:

    Please change it back or to something else, nerdiness aside, I can't cope with the ugliness!

    Reply

  23. fshnyc Says:

    Great post…my son was born on Valentine's Day with a congenital heart defect and had open heart surgery when he was 5 days old. We were in the NICU for about 10 days (I know, NOT long compared to preemies)- I will never forget the lactation room, getting excited and just being SO thrilled over milestones like o2 sats in the 90's, when he was extubated, when he got down to just a PICC line, the first time he finished 60ccs. Those NICU nurses are saints and though I was so scared beforehand (we knew from the time I was 20 weeks)- in the end I would say that I look back on it as very positive experience. I too feel a weird kinship and the urge to help when I find I have friends or meet new people who have a little one in the NICU. You should absolutely share your experiences- reading (and re-reading) about what you went through when they were born (and w/Lucas later) helped me alot when I was going through my own journey with Colin. Sometimes, when you're in the midst of a crisis like that it just helps to know someone else has been through it and came out of it ok.

    Reply

  24. Stephanie Says:

    Happy Mother's Day, Stephanie!

    Reply

  25. Sandi Says:

    My son was in the NICU for 8 days. Nothing compared to other's experiences, but we honestly did not know if he would live or die. My husband's sister told him, "Oh, I hear about that happening all the time. It's not big deal." My husband yelled at her that it isn't her Goddamned child in there. Would it be a big deal then?

    Did I mention my sister-in-law is an ignorant clod?

    Reply

  26. Charles Says:

    Indeed we are lucky to know you.
    Thank you for you.

    Reply

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