21 May 2012

First time NICU Parents

I wrote this for a friend who's sister in law just had a micro preemie (25-28 weekers) and was asking us for advice on the process.  I thought I'd share this on to anyone who might google preemie help or NICU information.  A little back history, my wife delivered our twin girls at 28wks. Baby A registered as a 25 weeker (550g) and Baby B registered as a 28 weeker (640g).  Baby B had a 2.5 month NICU stay at Le Bonheur Children's Hospital and Baby A had a 9.5 month stay, leaving with a G-tube and a trach + vent support. Both babies have been home since Oct. 12, 2011 and we are currently still on vent and MIC-KEY but in active trach trial procedures.

Here's a blog on NICU parental advice:


1) Don't be afraid to ask questions and have doctors explain what something means. If they aren't willing to explain things, find another nurse or doctor who will. You are your child's best advocate and you should try your best to understand what things are happening to your baby.

2) Don't google everything they say. Most of the things that might come up in some of the growth and development of the baby will be generic terms or broad diagnosis and when you start to google things that are that broad you get lots of general explanations and or really gruesome pictures that don't apply to your baby.

3) Do google things like medicines and specific diagnosis. You will gain a better understanding of why and how certain things work and affect your child.

4) Get to know your health care professionals and build a relationship with them. They WILL become life long friends. You WILL see them a lot. Be attentive to those that work well with you and those that don't and figure out why to both.

5) Be available as much as you can when it comes to being interactive with your child. Use compression care as often as possible whenever they are doing ANYTHING in the Giraffe Beds. Ask to help with changing linens, fixing minor things in the bed, and asking to Kangaroo Care as soon as possible. The more interactions you get with your child in this fragile state not only helps your child grow and get to know you but it also helps you keep sane, mentally, emotionally and connectively with your child.

6) Get to know some of the other parents around you. Strength in numbers. Everyone in the NICU has a sick baby, learn what other parents are doing to help their babies grow.

7) If the hospital allows, bring comforting things from home for the baby to know you. Sleep with lovies, blankets, swaddling, bedding. Keep them in ziplock bags until the day they allow you to use it in their Giraffe Beds. Your scent is an extreme comfort to them. Also, if it's family centered care rooms, bring speakers and soft comforting music to play every now and then. No AC/DC yet  Mozart for babies is a GREAT start.

 Do spend some YOU time outside of the hospital, especially if it's family centered care rooms. We lived in the hospital, almost a month before going to see a movie together. The nurses had to kick us out bec. we hardly left the room. It's important for your mental stability to do things for you as well because your baby needs you to be healthy. Your baby is surrounded by the best team that can be taking care of them and they will notify you if you need to be there.

9) Leave a disposable film camera / old digital camera in the room just in case something funny happens while you are out on said date. Our nurses would dress the girls up in cute outfits or pose with the babies when a big accomplishment was made like finishing a whole 2 cc's of milk for the first time. (it's a big deal... i promise.) Those little moments are fun to have.

10) Blog/Journal/Keep a Diary of this journey. (you can read ours at http://iamknittogether.blogspot.com/ - start around 12.13.10 for the hospital journey or 10.28.10 for the whole journey) because it is therapy. We have over a year's worth of writing that we are now turning in to a book to give to our daughters when they get old enough to understand it to show them the amazing miracles that they are. It's also an easy way to keep your family and friends informed about what's going on bec. a lot of them won't be able to see them at this phase of life. Also keep a notepad and pen in the room for when therapists, doctors and specialists stop by and work with your baby while you are out. Have them leave a note, their pager numbers or contact info so you can contact them about anything they might have done.