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

Sleep Awareness Week & Preemie Sleep Challenges

The National Sleep Foundation is celebrating its annual Sleep Awareness Week March 6th through March 13th, to raise awareness for the health benefits of sleep and its importance to safety and productivity. If there’s one thing new parents (and parents of preemies) have in common it is lack of sleep. A 2014 study showed that new moms were still sleep deprived after eighteen weeks of giving birth. There are hoards of articles with sleep tips for parents and recommendations for how many hours of sleep babies and toddlers need, but what if they don’t help?

preemie sleep, sleep habits, sleep awareness week, national sleep foundation, sleep challenges

Having a preemie in the NICU is challenging. If you’re lucky, you’re able to sleep in a recliner or couch near your baby’s isolette, or stay in a parent room. And while it’s comforting to sleep near your baby, hospital sleep is far from restful. I know this because my former 27-weeker, Theo, spent 200 days in the hospital, and I spent most of that time sleeping by his side.

Sleep challenges aren’t left at the hospital, either. Preemie babies have different sleep patterns than full-term infants, and often they have special needs that prohibit them from sleeping through the night, which in turn means the parents don’t sleep through the night either.

Theo came home on a feeding tube and I had to reprogram the machine every four hours with fresh breast milk in addition to pumping. Theo is now two years old, and he still has not slept through the night. He has sleep anxiety which makes bedtime difficult. Because he is underweight and diagnosed as failure to thrive, sleep training was out, as excessive crying leads him to vomit and he needs to keep that nutrition to grow. Our bedtime battles often last hours. Iron deficiency often leads to sleep issues, but even once we corrected his deficiency, there was no change. Our pediatrician prescribed a low dose of melatonin, but that didn’t work either. To add insult to injury, the less he sleeps, the more frequently he has night terrors.

Finally we saw a sleep specialist.

Because Theo spent so much time in the NICU and hospital as we waited for his lungs to grow, he adapted to a sleep schedule that followed his scheduled medicine and vital checks. His current preferred bedtime of 9:30 or 10 p.m. is reflective of when he would fall asleep in the hospital after he received his nightly medicine and care. Our sleep specialist’s solution was to give Theo a later bedtime with the goal of gradually moving it earlier. We also scheduled a sleep study for late spring to make sure there aren’t any other sleep issues. So far the later bedtime has helped him sleep, but it still leaves me exhausted.

The best advice I got while pregnant was to sleep when my baby sleeps. I’m still following that advice years later. On the rare occasion Theo naps (and we’re home), I nap, too. I know that good sleep makes me a better parent.

You can take part in the National Sleep Foundation’s Sleep Awareness Week Challenge and make the pledge for seven days of better sleep using their tips each night. You can also share your sleep strategies in the comments below.

Danielle Dreger About Danielle Dreger

Danielle Dreger (WA) is an ex-30 week preemie and the mom of a
micro-preemie boy born at 27 weeks after she developed HELLP. Theo
weighed 1 lb, 13oz and was 13 inches long and spent over 200 days in
the NICU/hospital with severe lung damage from complications from a
PDA ligation, a superbug, pneumonia and prematurity. Now Theo is a
happy and vocal toddler who loves “organizing,” reading, and chasing
his dogs. When not working as a teen librarian or working on her YA
novel, Danielle is chasing Theo, traveling with family, and trying to
squeeze in a nap.


  1. Sleep deprivation is so harmful to everyone involved. It is great to bring this up and hopefully help parents get the sleep that they need to stay strong. Thanks for sharing!

  2. My daughter is turning 3 in a few weeks and is still having trouble sleeping. We just had a sleep study done and are waiting for the results. I feel like she never really learned proper sleeping patterns – much like Theo. She and her twin, born 28 weeks, were first in the NICU, then at home having to be woken up to eat, then suddenly were expected to sleep through the night like regular babies. I really worked hard to sleep train them (don’t ask me what I did because I was so exhausted in those days that I wouldn’t be able to recall what exactly happened) by pushing off their feeding a little bit more each night and slowly bringing up their bedtimes…or something like that….:). My son figured it out eventually and is a good (if not an especially deep) sleeper. My daughter, though, never really got it. At 1 1/2 years old, I told the doctor that I felt like I had a newborn and we should check out sleeping problems. He brushed me off, saying it was ‘behavioral’ and that I shouldn’t go into her room when she wakes up. Do you think I didn’t do that? I never went into her room, and if I did, I didn’t stay there, because it would just prolong the misery. Now, at almost 3, the ENT sent us for a sleep study because her tonsils are enlarged and she may have developed apnea. I feel that if we do remove her tonsils, we will not really be treating the sleep issue that she’s had all these years without enlarged tonsils. The fact that she is still able to take 4-hr naps at this age (which I don’t let), gets very tired and falls asleep easily and very deeply during the day (again, which I don’t let), and yet can be so restless during the night, to me shows a clear sign that something is up. At this point I am at a loss and just so tired from everything! If anyone has insights I will be glad to hear them.

    • Lee,

      I hope you get some answers soon and you and your daughter get better sleep!I’ve seen a change since Theo had his tonsils removed last month. While he doesn’t sleep more than 8-9 hours at night, he isn’t waking up constantly and seems to be sleeping deeper and harder. His behavior has improved slightly. He still needs at least a 2 hour nap midday, but I’m finding that with this new sleep schedule, he is happier and so are we. I doubt we’ll ever get him to fall asleep before 9:30 or 10, but I’ll take short, good sleep, over bad sleep.


  1. […] brought my son, Theo, home from his seven-month stay in the NICU and children’s hospital in late spring nearly two […]

  2. […] Month, which is fitting because this August is the one-year anniversary of my ex-27 week preemie, Theo, getting his […]

Speak Your Mind