Hand to Hold's Official Blog: Written by Parents for Parents

Preserving Memories in the NICU

There’s an old cliché that says, “Hindsight is 20/20.”  Never is that more true than a long NICU stay with a micropreemie!  Most of my regrets revolve around my memory-keeping techniques—and here’s the way I wish I had done things:

  • I would have taken pictures of Adeline every day.  I would have put her next to a stuffed animal, my wedding ring, my husband’s hand, or some other object to demonstrate her miraculous growth.  I would have taken more artistic shots of her teeny-tiny body parts.  I would have compiled all those pictures into a wordless coffee-table photobook while those memories were still fresh.
  • http://www.preemiebabies101.com/wp-content/uploads/2010/06/notebook-and-pen1-449x281.pngI would have bought one notebook and kept all of my notes in one place.  I would have kept my personal journal, Addie’s measurements, and a record of the day’s events all in one place.  I have a three-ring binder filled with scraps of paper, two calendars, a folder, and a scrapbook, and a blog—and I can never find the information that I’m looking for.  I’ll say it again—one notebook!
  • I would have taken the time to write down my emotions every day.  The mom at the bedside next to me did—she was constantly writing in her journal—and I’m sure that’s a treasured keepsake now that her son is nearly two and doing really well.
  • I would have hired a professional photographer to do pregnancy pictures and “newborn” shots once we came home from the hospital.  Not a Portrait Innovations-type place; just a photographer and her camera in our home, capturing those precious moments in time!

All right—your turn!  What do you wish you had done differently in preserving your NICU memories?  Or, if you’re one of the lucky ones, what are you glad you did?


  1. OMG, I wish I would of been better about preserving all of the memories and Ty’s days in the NICU! Reflecting back now I didn’t do a very good job at it. Ty was in the NICU, for almost 4 months so could of had a lot of cherished momentos! I do have tons of pictures and videos that I took on my cell phone at the time and they are still sitting there on it. I don’t even use that phone anymore and have been saying for the past 5 years that I need to get them transfered off.

    I do have the precious pictures and little keepsakes that the NICU nurses would put together for my husband and I. I actually have a whole box of stuff that I need to get into a scrapbook…let’s see from day 1 and keep hoping to find the time to do it someday.

    I think I was so caught up in the fact that my son was born early and in the NICU that I couldn’t even focus on anything else at the time. I did share my cell phone pictures and videos with everyone while Ty was in the hospital because I couldn’t show him off. Then once I got him home he was on oxygen for almost two years and at doctors appointments almost once or twice a week. So I guess I accomplished what I could at the time and that was simply being his Momma and taking care of him.

    I have since started my own business Busy Breathers LLC and that occupies quite a bit of my time now. Because of our experience having Ty on oxygen I ended up designing and now selling a backpack that carries it. I also have other medical products for children and adults on oxgyen on my website http://www.busybreathersllc.com

    So I guess all in all I may eventually get to my scrapbooking goal at least I hope so. Maybe I should hire someone to do it for me? 🙂 I do however have a great keepsake that I will be able to cherish for years to come and that is our son’s story being in the book that Dr Jen Gunter wrote The Preemie Primer which will be out this month. Oh and the most important keepsake my 27 weeker little miracle Ty.

  2. Samantha says:

    I tried to write in a journal every day. I wasn’t very good at that. I have maybe a month for Roxy to read and that’s it.

    I did keep a blog on caringbridge.org because we have so many family and friends that were constantly asking, this allowed me to not have to repeat myself quite as many times or answer nearly as many phone calls every day. I kept it from when she was roughly 2 weeks old until right after she came home. I had it made into a bound book for Roxy to have. Because I posted her weight every day and her height every Sunday, I can reference pretty quickly any information I need. Plus, it has the guest book where her praises and uplifting comments were made printed in the back so she can see how many people were pulling and praying for her.

    I, too, wish I had taken more photographs that truly showed how small Roxy was and I wish I had gotten someone to do pictures at home earlier. We didn’t do her first real photos until she was 4 months old! I am trying to make a coffee table book of her first 9 months now and I don’t seem to have enough pictures!

  3. I kept a blog, and lots of pieces of papers marking his accomplishments. I took pictures pretty much every day. We have a chart where the NICU tracked his height/weight, and a piece of paper I wrote down milestones on. I just need some sort of place to keep all the little keepsakes together.

    I like the idea of a photobook. I took photos of my son nearly all of the 53 days we were there and I think it would be nice to have all the photos together, and add my commentary, too.

    I wish I had started a baby book right away, but at the same time, it’s kind of hard to chart in a baby book for a preemie because they don’t have special preemie milestones like “first time wearing clothes,” “first time nursing” or “first time taking a bottle.” Oh well, I’ll figure it out.

  4. Julianne says:

    I too wish I would have kept a notebook or journel with me. It would have given me something to do while I sat in the pump room or when he was sleeping. Definitely great advice to give to anyone who has a preemie in the NICU. Remembering it all later is like remembering a dream, it comes in pieces and blurs or out of order.

    We took lots of photos and video. We just used the camera and took little short videos….so glad we did that. We saved his blood pressure cuff and his first diapers.

    I also kept updating people on facebook and wished I had thought to print it all out. I went back recently to do so and have printed out a lot of it but it’s hard to go back that far.

  5. I wish I had taken more pictures too. I also wish I kept a journal. I thought about it every day but I was afraid to. After 5 miscarriages I was afraid I was going to lose my baby girl too. Maybe if one person told me that she was going to be okay and more than likely that she was going to grow and live a normal life I would have. My daughter was 26 weeks and 1lb 13ozs. One nurse told me that she would never look the same as normal babies, will never look me in the eye, and never act like a normal baby. well she all of the above is not true. I wish I would have wrote my feelings, and took more pictures.

  6. I kept a journal and kept everything– even took a small diaper

  7. I took daily and weekly photos, posted on Facebook and made a Picaboo online scrapbook.

  8. I wish I kept a journal.. I took pics daily, kept his preemie diaper, bp cuff and some other momentous, still wish I kept a journal

  9. I kept a caring bridge website the entire time. I kept it updated twice daily while she was in the nicu and even after coming home, still update periodically. I plan on updating once more when she turns one year old on the 10th of this month then ordering the book from the site. It compiles all of your journal entries and picture into a keepsake book. I also kept all of her blood pressure cuff each time she grew into a new size.

  10. although I took pictures everyday for 10 weeks, and kept things like her first cap, preemie diaper, etc., I have yet to start the scrapbook I had planned. Because of this, I started putting together a book on shutterfly that will have all of the pics, as well as dates and short descriptions of the events going on at that time

  11. After the first week, we started taking daily photos and video. We also have a few mementos……tiny diaper, binky, blood pressure cuff (size of a small bandaid), and some of the micro-preemie outfits we had, etc.

  12. as my mom (above) said we took pics and video, amd kept certain things wich i still have stored away in a box for the girls when they get older so they can see and understand what they have gone through

  13. We took pictures daily, but the one thing I did not remember to do was to video my son. I really wish I would have remembered to do that on a regular basis. The NNP in the NICu also took fun pictures all the time for us. We have saved so many NICU things in a box for Michael. The best part was the NNP’s always gave my older daughter the … See Moremementos from Michael in addition to ours. She felt so great to have the tiny diapers, bottles, binkys, ostomy bags, etc. We did not get birth announcements done either, but I figure better late than never at all. I was really preoccuppied in the NICU with my son and forgot a lot of little things to do to remember that experience.

  14. what we did and still do is get her foot printed every month (she was born at 23 weeks so she was tiny) i love looking at the difference. she is now 6.5months old and i still do her foot print often. i also took video, i didnt take it very often and now wish i took some more often but i look back at them all the time. i also kept all the name tags… See More, leads, beanie, dummy, tiny nappies, (i asked for extra tiny nappies to send to family that where far away, photos just dont show her size) cpap bits that they throw away, i even have a pair of sizzors (i know silly, but hay, you know). what i also done and still do daily is write in a diary, that has also helped me look back on info that i needed when she transfered hospitals, because they dont send a detailed medical record. i could look back and let her new doctors know what medically she had been doing at what point, oxygen levels, when she went off ventilation, off cpap, etc…

  15. Take lots of photos 🙂

  16. Take a lot of pictures. The NICU that my twins were in provided a disposable camera for each of them w/ their names on it. That way they could take pictures of them in we were not able to make it in to visit them one day— That way we didn’t miss a thing! Also we stayed in the Ronald McDonald House on the Hospital campus while my son was born so we were able to visit him everyday and we didn’t have to commute long distances to visit him.

  17. Victoria says:

    lots and lots of pictures, preemie diaper,journal and a stuffed animal..rabbit..{1 of the things we gave him for Easter while he was there}

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