This is the reality of prematurity

Although you will hear me be all sunshine and rainbows about my son (how I love him and I wouldn't change anything about him for the world, which I still wouldn't) here is the reality of prematurity.  I feel amazingly blessed to have a "normal" full term pregnancy before my preterm pregnancy.  However, having that wonderful nearly uneventful pregnancy also made me painfully aware of everything that I missed and was robbed of during my preterm pregnancy. 

The photo you see above was the last picture taken of my pregnant with Gunner.  I was 28 weeks along.  28 weeks, that is 12 weeks before my due date.  This was the morning of the day that my water broke.  Later that afternoon I was admitted to the hospital, not to be discharged until I had a baby, which at that point, they thought was imminent.  One of the things I missed was taking a weekly picture of my belly to see how it grew or having professional pictures taken, like I did with Greyson. Yes, I know, in comparison to my son breathing, this is very very petty.

 This picture again, we are all smiles.  It was Mother's Day 2009.  A day we should be celebrating, especially with an upcoming birth (that was supposed to be 2 months away) The reality of this is, I was stuck in a hospital bed over an hour from my home with infrequent visitors and a lot of solitude.  Solitude and worry that drove a person who is generally positive and optimistic to be worried, unsettled, and depressed.  Depressed to the point that at the 4 week mark, my mental health state required medication and monitoring.

I love my baby boy.  He was a giant considering the other babies he was near in the NICU.  A giant at 4 lbs.  My full term baby was described to me by many as "the smallest baby I have ever seen" well, now I had one upped that, with an even smaller baby.  I have very few pictures of Gunner with all of his wires and tubes, simply because I didn't want to remember it.  But the reality is, if I don't remember it, no one else will either.  If I don't remember and share this experience, there will be even more babies like Gunner.  Babies born too soon because the general perception of a preemie is a "small baby" who will be "fine" after awhile.  While that is generally true, it certianly doesn't reflect the reality of the day in and day out life of a preemie parent .

As I said, I was blessed with a relatively uncomplicated pregnancy before Gunner's birth.  I was blessed to have a baby that could room in with me, nurse for hours on end, to change a diaper without assistance, to have my only worry be if and when I may get some sleep again.  As you can see above, the parenting of a preemie is very different.  You are a visitor instead of a parent.  There is no 24-hour responsibility, because you just can't be there the whole time.  Especially if you are balancing the care of a 2 year old with that.

You have to wash for 30 seconds just to go in (with soap that if I smell now still takes me back)  You have to take a temperature every care session.  That is the only time you feed or diaper the baby, or you might overstimulate them to the point that they have spells where their heart rate drops or they forget to breathe.  You can't just nurse them, you have to see what they can handle at that moment.  You see progress and then the next time you are there you see regression.  You feel that the only thing you can do to really help them is to be up at all hours of the day and night pumping.  Wow.  That was verbal diarreah.  But the reality comes through; the parenting of a premature child is not an easy road.  This is parenting with a child who was able to breathe on his own.  I cannot imagine having a baby born so soon he couldn't breathe or touch as his skin is so sensitive it may rub off with a gentle touch.

All of that being said, I am reminded of my committment to the March of Dimes.  I am so firmly committed because this organization works tirelessly to help raise the funds necessary to research all of the things that can help end prematurity and help the babies born too soon.  So today, remember all of the babies born too soon, like Gunner.  But also remember and cherish your own children as well, because chances are they are all March of Dimes babies. 

What, you didn't have a preemie, so the MOD didn't have anything to do with your pregnancy or child?  If you refrained from drinking (1970's) or smoking (1970's) or took a prenatal vitamin daily (1990's) your child is a March of Dimes baby.  The years in ()'s are the years in which the March of Dimes' funded research told us not to drink, smoke, and to get daily folic acid in our diet.  So I have two March of Dimes babies.  A full-termer and a preemie.

Prematurity Awareness Day

Last year, I celebrated prematurity awareness for the first time, by posting Gunner's birth story.   A story that I took days to write, months to come to term with, and an event to share.  You may ask, why I say celebrated?  I think it is because although I wish I had a full term, uneventful pregnancy, I have to say I know why I didn't.

I didn't have a perfect pregnancy because:

The experiencing of prematurity inspired me to do my first March for Babies.  Our amazing team raised over $3000 to help fund research to fight prematurity and support families like mine.

The loss and helplessness I felt when visiting my son in the NICU has pushed me to support other families in that situation.  I have celebrated special nurses (nurse's day), special moms (gift bags to mommies with babies in the NICU) and a special hospital.  We did the Bronson's Children Hospital walk and facilitated a lovie drive, where we made over 50 tag blankets for children who need comfort in emergency situations.

I was able to help other preemie babies at our NICU and their moms by donating over 16 gallons of breast milk, including 300 oz of preterm milk.  This means less NEC, more weight gain, and anitbodies you just can't get in formula.

Due to the emotions and stress of prematurity, I have reached out to an amazing support network of moms who have walked a month or three in my NICU shoes.  They are amazing and though I have not met but one in real life, I consider them my friends and support network.

So I know, that even though I did everything right and this wasn't supposed to happen because of that, it did because it was meant to be.  I was meant to make a difference.

I'm a statistic

Did you know that between 1997 and 2007, the rate of infants born preterm in Michigan increased nearly 11%. Two thoughts, wow, that is scary and oh boy, I am a statistic!  That is 1 in 8 babies or over 12% of all of the live births in Michigan.  As a state, we get a D in the status of premature birth.  Of course that resonates with me, because I am an educator.  I wouldn't want a nurse who got a D in a class or a teacher who got a D in class teaching my children.  But that is where we, as a state, fall.

In An Average Week in Michigan

• 301 babies are born preterm  (this would be Gunner)
• 52 babies are born very preterm
• 202 babies are born low birthweight (this would be Gunner and borderline Greyson)
• 40 babies are born very low birthweight

Despite the fact that the March of Dimes is doing research, moms are seeking prenatal care (most of them) and following the advice of their OB's (again most of them) prematurity is still effecting our state and possibly babies you know and love.  It is way to scary to be a preemie parent and though I wouldn't change it for the world, I also wouldn't wish the experience on my worst enemy.

I am a perfect example of doing everything right and still having a preemie.  I teach human development; I know what you are supposed to do, I did what you are supposed to do.   (No smoking, drinking, take vita mins, get good prenatal care) I still had a full term baby who was lower birthweigth (5lbs 12 oz, down to 5lbs 4oz before leaving hospital) and a preterm baby.  I am one of the types of statistics the March of Dimes funds research for.

All stats are from the MOD website

It's November....so you know what that means

In November my blog goes from being just about my boys to honoring an raising awareness of prematurity...because of one of my boys!  Stay tuned for many rambling posts about what I know about and how we can try to prevent prematurity.

I do this because 1 in 8 babies are born prematurely, including my son.  Did you know that The Empire State Building will light purple on Wednesday, November 17, in recognition of the March of Dimes 8th Annual Prematurity Awareness Day?   During November, Prematurity Awareness Month, March of Dimes focuses the nation’s attention on the serious crisis of premature birth (birth before 37 completed weeks of pregnancy). A special Web site – www.marchofdimes.com/fight – includes the 2010 state-by-state and national Premature Birth Report Cards, information on the importance of the last weeks of pregnancy, and ways you can help premature babies.
The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies®, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, www.marchofdimes.com or www.nacersano.org. Find us on Facebook and follow us on Twitter.

"Mom"

Mom is a role, a job, and an honorary title. Mother (egg carrier) does not equal mom. I honestly do not think one grasps what Mom means until they are one. Once that happens, your world changes; you are now the protector supreme of someone more important than you. You live, breathe, and would do anything to support or provide for that child. I believe, this position in life transcends all others. I know that regardless of wherever my children are or however old they are or how strained my relationship may be with them I will always feel this way. I will always be there if they should need me. Forever their Mommy I will be.

Last summer I was in a position that was the most helpless and frightening that I have ever experienced in my entire adult life. I was in a place where my role as mom may have changed or even been taken from me. Spending six weeks unsure and unaware of what would happen to my child, confined to a hospital room, alone most days for 23 plus hours, taught me who was there to support me when I needed it most.

As I said, the love for a child transcends any other feeling in your life. When your child is in danger, nothing else really matters. As I spent countless of hours in the NICU after Gunner was born at 33 weeks, I witnessed traumatic things I would never wish on anyone. Things that unless you were there and see it you could never understand. Some that are painfully hard to forget include, seeing multiple failed IV attempts over the course of 1 ½ hours, which I could not even bring myself to watch. I would wander the halls, breaking down in tears in the hallway with each failed attempt and a new attempt at insertion, not caring who saw. Seeing and hearing alarms go off whenever his heart or respiration rate dipped because he was too young to remember how to breathe. Feeding him through a tube placed in his mouth or nose, as opposed to being able to nurse or bottle feed him. Calling the hospital in the middle of the night just to check on him, finding out he had spells (of breathing cessation) or had lost weight instead of gained, during a middle of the night pumping session (in which you are doing the only thing that you can to actually help your child). Loosing sleep, pumping every 2-3 hours of the day or night, sleeping no more than 5 hours each night.

Me, as an individual did not matter; all I was concerned with was my child and his well-being; again, a very vulnerable and frightening time in my life, where the health and survival of my child was in someone else’s hands.  So during this time, again, you learn who you can really count on. In retrospect, at this point, it meant nothing if someone had visited me or sent me flowers, it was all about Gunner. Just a call or email or recognition of his birth, while not full term and health uncertain, meant the world to me. Or any suport that could be offered for my family that I was leaving behind to care for this fragile child. 

If I didn’t get these, I felt I knew what that meant and that was ok, it just wasn’t a relationship that I needed to maintain, or one I could maintain with the effort the other person had exerted. So I concentrated my effort on doing what I could to bring my child home and then once home what I could do to keep him out of the hospital. Essential relationships where someone was able to reach out to me flourished, those that required me to initiate the contact extinguished, as the work of mother of a premature baby is never done. Feeding, sleeping, snuggling and holding are all different, not to mention child care arrangements, doctor type and number of appointments.  I did this all while working a full-time (graciously with PT hours) job as I provide the health insurance for the family.  So, if someone didn’t make time for me, I couldn’t find time to make for them.

Special days

October 15th and  Novemeber 17th are special days to me.  Special to the mission of the March of Dimes and to me as a parent.  October 15th is Pregnancy and Infant Loss Rememberance Day and November 17th is Prematurity Awareness Day.

These days touch my heart as I cannot imagine a greater loss than that of a child, regardless of age or gestation and I cannot imagine a struggle more bittersweet than that of parenting a baby born prematurely.  So, on Friday night I lit a single candle to remember all who have loved and lost as my private celebration of the moment.

As we approach November 17th, I will be attempting to raise awareness for the day that truly touches my heart and that of my son.  If you should want to join me, please do.  I took the following from the Blogger's Unite website, but all is true of my own situation.


Every year, 20 million babies are born too soon, too small and very sick-half a million of them in the U.S. November 17th is when we fight!

Do you know a baby who was born too soon, too small, unable to breathe or nurse on their own? With 1 in every 8 babies born prematurely, you probably do. While medical advances give some babies a chance of survival, for many babies premature birth is a life-or-death condition. Babies who survive can face serious health challenges and risk lifelong disabilities. 

If you are reading this blog, you do.  My son Gunner, born at 33 weeks.  He is the picture of health now, but 16 months ago, he too was fighting for something...his life.  He too was unable to eat on his own or able to control his temperature.  He had to be monitored 24 hours a day, just in case he forgot to breathe on his own.

The rate of premature birth has risen more than 30 percent since 1981. In half the cases, we simply don’t understand what went wrong. The March of Dimes is leading the fight for answers. And, ultimately, preventions.

This is our situation.  We have no idea why my water broke at 28 weeks.  I did everything right, I teach devlopment, I know what to do and what not to do.  But it still happened.  The March of Dimes funds research to help figure that out, so that maybe another mom won't know the undue stress that having a baby too soon brings.
November 17 is dedicated to raising awareness of the crisis. Take 3 steps to help fight premature birth:

1. Visit marchofdimes.com/fight.

2. Put a badge on your blog to help spread the word.

3. On November 17, blog for a baby you love and to help others.

We need to fight ― because babies shouldn’t have to.