Long Term NICU Stay

No one plans to be in the NICU for weeks or months.  When King Diaper was in the hospital, I used to watch families leave the NICU after a few days or anything shy of a month and cry.  Not because I wanted them to stay longer, I wanted to be them.  I wanted to go home with our baby and have a normal life.

Having a 25 week preemie, generally means a long stay.  And there is no rule on the time and it varies from baby to baby.  But, if this happens to be you or a loved one, plan wisely and try to wrap your mind around the reality of it.

I wish that I could have just embraced the length of stay rather than fight it but I didn't.  I look back and realize how hard it made things by fighting reality.  I was frustrated daily with the fact that our lives felt like they wouldn't ever be normal again.  And for a while they weren't.

Surviving the NICU can be hard, but there are things that you can do to be actively part of your baby's early life in even the smallest ways.  Below is a list of items that can really be helpful during long NICU stays.

Before, you read this, do remember that every hospital has rules for sanitation and everything on this list may not be permitted.  Please check with the hospital before charging forward with what to buy.
  1. Mobile or Baby Einstein - Having something musical and visual is good stimulation for the baby.  It is calming and good for the baby once he or she gets older.  During the time in the isolette, these things aren't really necessary.  We didn't have a mobile for several months.  But, he loved it when he did get old enough.
  2. Lullavibe - This is like a vibrating ping pong paddle that is padded.  It is calming and soothing to the baby and is great gift for people even not in the NICU.  This was something that was helpful after King Diaper was a bigger baby in the NICU and off the ventilator.  It helps to calm him when he was unhappy.  
  3. Wipe Warmer - We looked for anything that could make our baby more comfortable.  This was one thing that we could do even from itty bitty times when we first starting changing diapers.  We took it with him to the PICU for his heart surgery and recovery.  I felt like if nothing else he could have warm wipes on his toosh if nothing else.    
  4. Crib Sheets - Once King Diaper was in a big crib, having sheets were so nice and made it feel more like our little space.  It was something that we could do for him and was very important for us.  The NICU makes a mother long for having her baby at home in their own bed.  Well, the 'bed' to your baby with colorful fun sheets.  
  5. Comfy onsies or sleep sacks - Tiny preemies sometimes cannot wear clothes.  King Diaper didn't wear clothes until he was 3 1/2 months old.  But if you can put your baby in clothes, consider wires and everything connected to your baby for monitoring.  So simple onsies and sleep sacks are the best.  Skip the zippered sleepers.  These are just too much trouble to have on preemies.
  6. Boppy - A boppy is great for positioning.  We kept one at the hospital and our baby enjoyed the change in position.
  7. Bouncy Seat - The bouncy seat was another way to reposition the baby.  We were in the hospital for over six months.  Being in the bed for so long is limiting.  But, this is a good way to change the view for the baby.
  8. Crib Toys - This is a good way to stimulate your baby and give them something to look at.  Again, check with sanitation and be aware that this is not needed until the baby is a bit bigger.
  9. Good lotion for your hands - This is for parents and/or grandparents.  You will start to feel like you are washing the skin right off your hands after a while.  Burts Bees makes a great lotion that is really thick and helpful!
  10. Music on an ipod or mp3 player that can easily be played - Our little guy loved music.  We made all kinds of play lists on our iPod for him to listen to at the hospital.  It was just another way to do something when you feel helpless and can't do anything.  I would put a small speaker with my iPod into a ziploc bag into the isolette with him to play music when he was tiny.  I continued to do this for him for most of his stay.  
And if you know someone who is in the NICU for a while, what can you do for them?  For starters, cards and visits even for a few minutes are so nice.  We had people that sent cards that we put on the bedside for our baby throughout our stay.

Also, offer to help with pets or laundry or housework for the family with a child in the NICU or hospital.  These are things that are very helpful and must be done no matter what.  

No one plans to be at the NICU for months.  It is a harsh reality for a mom that was anticipating the delivery of a healthy baby followed by coming home to the warm comforts of your new nursery.  Try to create a space at your baby's bedside that has some comforts of home and can soothe your baby.  These are things that you can do for your baby.  Finally participate in your baby's care.  If nothing else, change diapers if you are able, talk to your baby or hold their little hand.  The smallest things will make you feel bonded to your baby and help you as you struggle with your new role as a mother.