Wednesday, November 2, 2011

November is Prematurity Awareness Month

That's right!  This whole month I hope to bring awareness to premature births through Claire's blog.  Claire's birth at 29 weeks was one thing that we were not prepared for to say the least.  We had a little time to prepare for Claire's heart defect and to somewhat know a little about her liver cyst (well, we knew it was there but had no idea what it was and what it would end up doing).  But having a preemie was the one thing I had not prepared myself for.  None of my friends had ever had a preemie.  I had never experienced anything like it.

According to the March of Dimes, every year there are 13 million babies born prematurely worldwide.  Claire was one in 13 million (ha ha, she beats the old saying "one in a million"!).  They created a map of the US grading each state on premature births.  NC got a grade of D.  Wow - that's pretty bad.  I'm not really sure why NC is so bad???  Maybe as part of my awareness stuff this month, I will try to research that. 

Anyways, premature birth is not something most people expect or prepare for.  It's tough.  When you have grown up your entire life knowing that your parents had 4 healthy children (I weighed 8 lbs, 8 oz, my sisters both weighed over 10 lbs, and my brother was almost 13 pounds), I never expected for our baby to weigh only 3 pounds 2 oz and be only 16 1/4" long.  And prematurity doesn't just stop at the small size.  Claire battled apnea, bradycardia, jaundice, blood transfusions, tube feedings, etc. due to her prematurity.  We were not allowed to hold Claire until probably almost 48 hours after she was born, and then only got to hold her for 15 minutes a day. 

Premature babies are still developing and need lots of quiet time so their brain can continue to grow.  They don't like to be rubbed like full term babies because their skin is so thin and underdeveloped, it bothers them.  To comfort preemies, you just place your hand on their head or on their body and hold it there.  For preemies, kangaroo care is important.  We got to put Claire skin to skin on our chests when we held her to let her feel comforted.  When Claire was first born, she was so small, I could put her down the front of my shirt for kangaroo care with her legs and butt tucked in the front of my bra or tank top and her head would rest on my breast bone.  That's how small she was. 

Preemies like Claire have lots of IVs in them at all times.  Doctors need permanent access to them in case an emergency arrives.  Claire will always have little "dots" as scars from all of the IVs she had in her hands, feet, and wrists.  Most of the time a PICC line has to be inserted which is kind of like a more permanent IV line except it is fed through a main vein/artery (?) in the arm and usually goes close to the baby's heart.  This helps with not damaging the veins as much by putting so many meds in the little tiny veins. 

Preemies are not born knowing how to suck and swallow like full term babies.  This is something they have to be taught and learn while in the NICU.  Pacis help a lot with teaching these skills so preemies get pacis early on.  Until they can learn to suck and swallow without having bradycardias, they are fed through feeding tubes usually placed in their noses or mouths.  A machine pumps the milk at a certain rate per hour to them.  If they cannot have breast milk or formula, preemies are fed a yellow liquid called TPN that contains all the vitamins and nutrients they need until they can tolerate the milk/formula.

One of the biggest challenges for preemies is weight gain.  If your baby is being moved around, not resting, and constantly fidgeting, they are going to burn way more calories than they take in and lose weight.  So it's vital for your preemie to be as calm and still as possible and rest  A LOT.  Every ounce counts to a preemie. 

Preemies have muscle issues too.  If you think about it, a full term baby is balled up in the momma's belly for a while therefore he/she knows how to use those muscles to "cuddle" into a ball.  Well preemies are so small they haven't gotten to the point of being in the fetal position in the momma's belly yet before they are born.  So a lot of times when they are born, they are kind of all sprawled out.  So they stayed tucked into foam filled snugly things in their incubators that wrap all around them from head to toe and around their bodies to make them feel like they are still in the womb.  Or they are swaddled tightly in blankets all the time to help those core muscles.  That's why there are not many pictures of Claire in her first few weeks of life without something bulky wrapped all around her, so you really can't see how small she actually was. 

You might ask how you can prevent premature births.  Well, I wish I had the answer.  I know there are a lot of ways like not smoking, being healthy, resting, etc.  But in my case, there really wasn't anything I could have done differently.  Nothing.  Don't worry, I have analyzed and analyzed it to see if there was, but no.  The only thing that kept Claire from being born for a week was the fact the doctors did the amnio and reduced the amniotic fluid and the liver cyst fluid.  And this was not something they could keep doing without the risk of miscarriage or premature birth.  So not all premature births are preventable in my honest opinion. 

It's so hard to remember how small Claire really was when she was born.  I think back and remember that I thought all full term babies looked HUGE and that Claire was a "normal" size baby.   I remember seeing Ava for the first time (she was born 2 weeks after Claire full term) and thinking she was a giant! 

We have to accredit the NICU doctors and nurses at Duke for taking such good care of Claire for 99 days (and afterwards).  Their knowledge, skills, compassion, understanding, and love for each of those babies is insurmountable.  We all know that God is the Great Physician and that He is in total control of everything.  But those nurses and doctors sure know how to take God's plan and put it into action for the best care for His miracles. 

The Scott Family

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