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

A Day in the Life

What is a typical day like in the life of a preemie mom? I was just thinking that it would be interesting to share our different experiences. Let’s start with a day during our preemie’s NICU stay. I’ll take a day out of my own experience, about 2 months into my daughter’s NICU stay, during the Christmas season. At this time my preemie was between 36-37 weeks gestational age.

Situation: I’m living with my Dad and Step-Mom who live only a few minutes from my baby’s NICU. They’re older (in their 60s) and on various diets; socializing is rare and food is hard to come by. I helped them move into this home just days before I joined them and only necessities were moved in so the home is mostly bare. However, I do have a comfortable room with a TV, lots of privacy, a washer & dryer to use, and my Dad who is willing to drive me to the hospital and back whenever I ask him to.  I am very grateful.  My husband is four hours away (in a different state) going to school, and he drives up every weekend to see me and the baby for a few hours.  I miss him terribly and have an emotional breakdown every Sunday when I have to say goodbye to him again and face the coming week alone.

MY TYPICAL DAY

5:00am Wake up to pump (I keep my portable pump, cleaned bottles, and storage bags by my bed so I can pretty much stay in bed). While I pump I flip on the TV and watch early morning reruns of “Saved by the Bell”.  Since I loved “Saved by the Bell” as a kid, I feel lucky that there’s something entertaining to watch to pass the time during my early morning pumping session.  I pump between 12-16 ounces, put it all into freezer storage bags, label them with date and time, and jump back into bed for 1 1/2 to 2 more hours.

7:15am Wake up, shower quickly, pack my bag for spending the day at the NICU (my NICU parent binder, journal, crocheting project, book, cell phone & charger, pen, camera, water bottle, some cash, and whatever food I can scrounge up for my lunch cooler), eat breakfast if I can find something or if I have time, and rush to the hospital with my Dad (I’m always running behind).

8:00am I rush to make it to my baby’s 8:00 rounds (the doctors gather around my baby and discuss her medical situation) and cares (diaper change, temperature and blood pressure check, and feeding).  I hope the nurse doesn’t gavage my baby because I want to try breastfeeding if my preemie has enough energy.  If she doesn’t have the energy then I’ll rush off to pump after cares (a little late and I’ll be about bursting!).

8:45am Hold my baby and talk to her if she’s awake, or just snuggle her for awhile.  When she falls asleep and my arms are tired I’ll write the day’s stats in my journal:  nurses name, baby’s weight, how big her feedings are and if I was able to breastfeed or not, and any changes in oxygen levels (most likely noting whether she’s in the oxygen tent, head box oxygen, or just the nasal cannula).  I might also record my feelings during the day and who visits – if anyone.  If I didn’t have breakfast I’ll either go to the hospital cafeteria for some french toast and yogurt or I’ll head to the hospital Starbucks for a muffin.  Otherwise, the next couple of hours are spent at my baby’s bedside writing, reading, crocheting, or holding the baby.

11:00am Take over my baby’s cares and try breastfeeding again if she has the energy.  If not I’ll try bottle feeding.  If she’s too tired for even that then she’ll be gavaged (having the energy to eat was the biggest problem we faced during our entire last month in the NICU – congestion made it hard for her to breathe so that made it even more difficult for her to feed orally).  I’ll leave to pump and then come back to be with my baby if she’s awake, or head to the cafeteria for lunch unless I was able to scrounge up enough food at my dad’s for a sack lunch.  If I go to the cafeteria I’ll sit by a big window so I can see a glimpse of the outside world that I haven’t seen in almost two months.  I can’t believe how fast the seasons changed and that Christmas is almost here.  If I have a sack lunch then I will go to the parent’s lounge in the NICU where there’s a small table, a sink, some plastic and paperware, a small fridge, a microwave, and a TV.  I’ll charge up my cell phone and call my husband to update him on our baby’s progress and then I’ll watch whatever I can find on cable.  This is a much needed break from the stressful environment of the NICU.

12:30pm Return to my baby’s bedside and stay with her, hold her if she’s awake, or read, crochet, or chat a bit with the nurses (rare because I was usually the only parent in the room and I was too stressed and emotional and tired to want to be the center of attention).  

2:00pm Do my baby’s cares and once again hope to breastfeed.  If I do breastfeed I have to find the breastfeeding scale, weigh my baby and record it, then nurse her for as long as I can keep her awake, then weigh her again to see how much she ate.  If she ate most or all of her feeding then it’s cause to celebrate!  If she didn’t eat enough they they gavage her for the rest of her feeding and I leave to pump what’s left in me.

2:45 – 5:00pm Often I will take a nap in the afternoon, because I’m so tired (lack of sleep and producing a ton of milk – it’s hard work!) but it largely depends on if I can find an empty parent room.  Usually I can.  There’s a TV in there, a couch, a couple chairs, a table, and even a pull-down bed, but I usually lay down on the couch and am asleep in seconds.  If I don’t take a nap I’ll probably take a break anyway and wander the halls of the hospital, browse the gift shop, sit in the chapel for awhile, read in the NICU waiting room, or find a computer to send out an email update to family.

5:00pm If I wake up in time I’ll do my baby’s cares, but if I’m late then I’ll pump first and then go spend time with my baby until I’m so hungry I can’t wait any longer and I’ll head to the cafeteria for a slice of pizza, some pasta, soup, or a sandwich.   I have a cafeteria card so I get every 10th meal free (or something like that).  Nurses shift change is either 6:45 or 7:45 (I can’t remember) so I make it back so I can be with my baby for a few minutes before I’m kicked out or I take my time getting back to the NICU so I’m there right after shift change. 

8:00pm I’ll do my baby’s cares and nurse or bottle feed one more time, then I’ll leave to pump again.  If my baby is awake I’ll stay with her for as long as my energy lasts because it is SO hard to leave her – especially when she’s awake.  I also hate leaving now because more parents start to arrive for evening visits with their babies and I very much need someone to talk to and wish I could get to know them.  However, I am usually so worn out mentally, emotionally, and physically by this time that I force myself to call my Dad to come and pick me up.  I give my baby hugs and kisses and say “goodbye” and “I love you” about a hundred times before I take a deep breath and walk out the door.  I grab all of my stuff from my parent locker (I have my favorite locker that I try to get every day – kind of like a church pew, how it’s not really yours but you’re a little miffed when you arrive and someone has taken your spot) and walk out of the hospital into the dark winter night and breathe in the cold fresh air for as long as I can. When I get home my stepmom is usually in bed so I might scrounge up some food, watch TV with my Dad or chat with him for awhile, then I’ll head to my room and call my husband to give the final update of the day and talk with him for as long as I can.  I usually cry for awhile after hanging up.

11:00pm Pump one last time for the night while I watch whatever I can find on Nick-at-Nite, then pass out in bed.  I allow myself a full 6-hr block of sleep without getting up to pump because it’s one luxury I can award myself at this point.  I’ll be up at 5:00am to do it all again!

Wow, that was a lot longer than I originally intended, but as I put myself back into my NICU mom shoes the feelings and memories just came flooding back.

Will you share with us a glimpse of what your days were like when your preemie was in the NICU?  And no, it doesn’t have to be as long or detailed!  I can’t wait to read your experiences.

Afton Mower About Afton Mower

After Mower (UT) lost her firstborn son at 21 weeks.  Her daughter was born a year and a half later at 27 weeks.  The NICU was overwhelming and isolating and it was through those two experiences she was led to found this social hub for parents to find the support they needed. Afton also gave birth to another daughter, born two days overdue after four months of strict bedrest. She believes it is a tender experience to hold a special baby in your arms when his spirit returns to his heavenly home, a miracle to watch tiny babies survive the risks of prematurity and a blessing to hold a healthy full-term baby after months of difficulty and sacrifices.

Comments

  1. Phew! Yeah, those were crazy, crazy days!

  2. Thanks for sharing this. My days were similar (pumping, making it to rounds, jumping at the chance to do my baby’s cares, cafeteria food) except that my father-in-law paid for me to stay at the Med Inn connected to the hospital. My husband …& other 5 children were 2 hours away going on with life but came down every weekend. I had many cell calls ending in tears because I missed them so much. I remember feeling absolutely exhausted everyday & I sometimes questioned if I should have been at my baby’s bedside more often – I’d feel guilty for taking a nap or wandering the aisles of Target for 1/2 an hour. I can see through a different lense now, though. I know that I needed those breaks to just refresh. Most of the other parents could only stop by once a day & some not even every day because of the distance they lived or they had to work. I feel incredibly blessed to have been able to live right there. Life in the NICU can feel so lonely and isolated. My days were consumed with Hayden but everyone else was occupied with day to day living – school, work…. So thankful to be home! NiCU seems so long ago, a different lifetime!

    • I always thought I should be at my baby’s bedside more, whether she was awake or sleeping. I felt guilty every time I left her room, and guilty for taking naps. So rough! But you’re right, taking some time for yourself is immensely important.

      If I had to go through the NICU Experience again I would make myself take a walk outside every single day to get some sunshine and fresh air. I would also record my voice reading stories and singing lullaby’s for my baby at nights, because I think that is the most brilliant and wonderful idea ever (shared by one of our readers in a previous post somewhere… I can’t remember).

  3. I always felt lucky since the NICU @ St. John’s Mercy in St. Louis, MO was awesome. My baby had his own room equipped with a couch that could be pulled out and made into a comfy bed, a comfy recliner, wireless and a locker, the nurses provided any amount of blankets and pillows. There was also a pump and a curtain that could be pulled for privacy while pumping. The family room was always stocked with chocolate milk/juices, puddings and crackers. I lived close to the hospital so I had the luxury of running home….but I know there were parents who stayed there for weeks. Also, if there was a nurse on duty that I did not trust, it made it easier for me to spend the night with my baby. I was always thankful for having access to such an awesome NICU.

    Reading some of the comments it got me thinking if there are any mum’s who had to go through the NICU experience all over again and what that was like? I mean I know there are certain things I would change if I had to go through it again….but the thing is no one really knows for sure till it happens.

    • I went through the NICU experience twice. My first preemie was a 32wkr and feeding and gaining were her biggest challenges. We lived close, within 10mins, and it was a small NICU, Level 2EQ, I think max capacity was 16 beds and they weren’t supposed to take babies earlier than 28wks planned deliveries. I had a 17mo old at home and a husband who worked full time and was a full time student. I was only able to go twice a day for a 2ish hours each time unless I chose to go very late at night because I had to find a sitter for my little girl each time I went. I was horrible at writing down everything. I took a lot of pictures and talked to the nurses a lot, I was emotionally spent a lot of the time.
      When I had our 2nd preemie about 21mo later I now how 2 kids at home. Fortunately had help from my mother in law a couple days a week so I could spend longer blocks of time with my new baby and the other days I was there only once a day and left the girls with a sitter until Melany could handle more attention, her cares were only every 6 hrs for a while. It was different when Melany was so little and so frail than with Ashtyn. I was able to kangaroo with her occasionally and held her once a day after the first week (she was in a humidified incubator for the 1st week.) It was hard because I was familiar with the experience but it was also very different because she was 5 weeks earlier than her older sister and faced a lot more challenges. I was still awful about writing things down, I took a lot of pictures and made things for Melany to make me feel like I was doing something for her (I made her a NICU friendly dress and matching flower for her to wear once they turned off the humidity)
      I learned one thing.. that I was Melany’s advocate that had a different insight than the medical professionals and I needed to push for what I felt was important. When Melany was recovering from a very scary staph infection I hadn’t been able to hold her for a week. I rushed to make it to her cares after dropping the other girls off only to be told by a nurse that I couldn’t hold her yet. I broke down in tears. I knew that even tho she was not as steady as they would like with her breathing that I could help her. I told her nurse that I thought it would help her and me… she called the Nurse practitioner and told her how I felt and the situation with Melany’s breathing. They said we could try. IT HELPED. It was what we both needed and I felt so strongly about it, her saturation was at 100% the whole time I held her. I am glad I knew my voice as her mommy could be heard. That was just the first of many situations where I had to advocate and speak up because there is so much more to caring for these preemies than what is on paper. More than anything I am glad I was heard with our second preemie. I am sure it helped that they all knew me and knew that I had done so well with Ashtyn.
      There are still things i would do differently if it happened again, but I am praying that our next child will wait much longer to arrive.

  4. Luci Kemper says:

    Reading your responses makes me a little jealous. And I feel bad for how little time I spend there. I’m almost positive things will be different once I start breastfeeding, but for now, all I can do is hold her for as long as she will let me. And because she is so weak, the nurses are usually hesitant to let me hold her more than once. Which is another thing, I know it’s for her own good, but it feels so strange to have to ask to hold my one month old baby.

    • Don’t feel bad… seriously. The first time I was permitted to hold my baby was when she was 4 weeks and 1 day old. It killed me to sit and watch her day after day and not be able to hold her. After I finally could hold her the nurses would only let me hold her once a day for just a few minutes, and on a bad day they wouldn’t let me hold her at all. It wasn’t until she was moved from her incubator to an open crib (at 6 1/2 weeks old) that I was able to hold her pretty much whenever I wanted to. What a glorious milestone that was!

      Every different stage has its challenges. I hated being told I couldn’t hold my baby – I wanted to yell at the nurses that she was “MY BABY!”, but I never did. It’s so hard.

      Hang in there. Things will get better with time and your baby’s growth. Your time will come!

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