Wednesday, November 30, 2011

Great resources/My advice for preemie parents

Not that you are asking for advice, but, in light of the last day of prematurity awareness month, here are some things we found helpful.

One of the best things I found that helped us learn about preemies and how to raise one was the book called  "The Essential Guide for Parents of Premature Babies" by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron, MD.  It is a great source of information that deals with preventing premature births, getting ready for a premature delivery, seeing your preemie for the first time and what to expect, questions you should be asking your doctors and nurses, how to settle down at the hospital, taking your preemie home, your preemie's first year, the loss of a baby, special needs children, and much more.  I referenced this book so many times those first few months.  It is written by 3 mothers of preemies so they know what we all are going through or have been through.  I highly recommend this book to any new preemie parent!

If you are more inclined to look online, the March of Dimes website is also a great source of information. 

I also really recommend new preemie parents to invest in a good notebook or journal to take to the hospital with you every day to write things down that happen or that the doctor tells you about your baby.  Trust me, even if you try to remember all of it, you just can't.  We would write down everything the doctors would say at rounds each day, questions we had, Claire's vitals and weight, who her nurse and doctor were each shift, the plan, any events that happened that day, who came to visit, etc.  I would also write down what the nurse said every time I would call in at night or when I was not there.  We have 2 large volumes of notes.  It's also a great thing to have where you can write notes to your child while sitting there for hours on end.  It was so nice to have that book so when I would get home from a long day at the hospital, I could update the blog from the book.  If I couldn't remember what they said they were going to do the next day, I could look back and read it.  If I couldn't quite remember when they fed Claire last or when she had her last bath, I could look back and figure it out.  I could keep track of the sizes of the liver cysts, the dates that they did the ultrasounds of it, and when they drained it and how much they drained.  It was vital for us to keep these records for ourselves.  It also gave me some sense of "control" in a situation where you feel so totally out of control the whole time. 

For parents/families/friends of preemies in a NICU, you will quickly learn that you wash your hands non stop and you use antibacterial hand sanitizer or foam almost more than you blink your eyes.  Your skin will dry out and feel like it's going to fall off.  You will wonder why you never considered buying stock in Purell hand sanitizer before.  I encourage you to invest in some really good hand lotion.  The best I found was Gold Bond Ultimate Softening Skin Therapy Cream with Shea Butter.  You don't really use it while in the NICU, but when you get out or are not there, you will want something like this to put on your hands.  I promise.

You won't realize it then, but you will look back in a few months after you bring your preemie home and notice that all of the pictures you have of you and your baby for the first few months of life involves an ugly hospital gown.  ALL of the pictures.  You get so accustomed to wearing it every day while you are caught up in the adventure, you don't notice it.  But once you look back, you wonder why the hospital either doesn't invest in some "pretty" gowns or something!  I know it's all for the protection of your little one, so I am not complaining one bit.  I would wear those gowns again in a skinny minute knowing it protected Claire and all of the other babies from any germs I may be carrying on my clothes.  Just warning you! 

You will probably want to buy your preemie some clothes of his/her own.  Well, I wish you good luck if you are in the Eastern NC area!  They are few and far between.  But since I have been noticing, Walmart in New Bern has the most variety lately.  Anyways, the best kind of sleepers to get are the ones that button down and not the zipper ones.  The buttons allow all of the wires and IV tubes to come out of the clothing and still let you button that outfit up and keep your baby warm.  You can't zip up wires and tubes. 

Reach out to others who have been through this experience.  I don't know what I would have done without Super Dude's mom.  Even though he was not a preemie, he was in the NICU for longer than Claire was.  And she guided me through, offered me advice, told me the ins and outs, told me who to go to for certain things, and just gave us support and comfort knowing we were not alone.  Just knowing someone else who has been through an experience like that can go a long way.

Also reach out to other parents who have babies in the NICU at the same time as you.  They know exactly how you feel.  Every day is different and you will get used to asking how their baby is "today".  Connect with them.  You can make lasting friendships.  Your babies will have automatic BFFs.  To be honest, when you are in those small rooms during rounds you basically hear everything that is going on with each other's child.  So sometimes you are already empathizing with them before you can even ask how things are going.  Sometimes you will be asked to leave the room while the doctors or nurses perform a procedure on your child.  If you have a friend still in the room with their child, they can text you updates!  ;)  This was done a time or two.....

Ask the hard questions.  Stay on top of things.  You know your child best, so make sure you let your concerns be heard.  It's exhausting to say the least.  Make sure you have someone there with you sometimes just to sit with you and listen in your place.   Take time for yourself as hard as it may seem.  This doesn't mean go take a vacation while your child is in the NICU.   It can just mean going out of the hospital for an hour to eat.  Or going for a walk outside.  It can make a world of difference.

Trust and respect your nurses.  They care for your child just like he or she is their own child.  Build a relationship with them. Your nurses are your allies and your go-between when you have concerns.  They are there with your baby at night when you cannot be there.  They may shove you out of the room and secretly hope you don't come back for a while so they can hold and snuggle with your baby while you are gone.  Don't get me wrong - I am SURE there are a many a time the nurse rolled her eyes and sighed when she heard the front desk call back and say, "Nurse for Baby Scott?  You have a call on line 5555 from the mom" and thinking, "oh geez, didn't she just call an hour ago for an update?!?!  Do I have to tell her every single detail again?!?!"  But they do it graciously and with concern.  Yeah, you're going to get a nurse now and then that you worry about leaving at night.  But they are all trained and there are usually 2 or more nurses to a room.  So your baby will be ok.

Pray.  Pray without ceasing.  And when you just don't feel like you have the energy to pray, ask people to pray for you.  They will be happy to.

Keep a camera handy and take lots of pictures.  And videos if you think about it!  We took a bunch of pictures, but only one video the entire 99 days.  Do not ask me why.  I wish we had taken more videos.  Even though your baby is in a hospital, these are important days of their lives!  If they were home, you would be taking lots of pictures.  So do it just like you were at home.  This is YOUR baby we are talking about!  Sometimes you will feel like it's not your baby (as you are out of control of your baby most of the time), but he/she is.  So treat her that way.  Just stock up on picture albums!

Some other things to take with you to the hospital (or if you are like me, to get someone to buy you since you didn't have time to pack a bag or buy baby stuff) would be a boppy pillow to help you hold your baby hopefully for hours and a tank top to help with kangaroo care.  A water bottle is also good because they keep the air so dry in the NICU to ward off germs that you will feel so parched all the time (also helpful if you are nursing to keep hydrated). 

Hope this may help someone out there!!

The Scott Family

1 comment:

  1. My little one was a micro preemie, so the preemie clothes did not fit him. I was able to get several pieces of clothing online and many were designed to be hospital friendly for the lines and leads. He was finally able to start wearing the "normal" preemie clothes around four pounds.

    Your advice is wonderful. It was hard navigating the ICN without having anyone who had navigated it before. We tried to befriend other parents as they came to the unit and offer advice and answer questions. Even though each family's experience is unique, there are many similarities.