Change of View

Image from Blackbird Ink Photography

I’ll be honest. It’s been a rough couple of weeks for me. I’m not sure why, but I’ve been in a funk. A “my-poor-baby-deals-with-so-much” kinda funk. It could have been the J-tube change. It could have been the ileus. It could have been the writing for the March of Dimes.

Image from Blackbirg Ink Photography

Most likely, it’s the Physical Therapy student who has been attending our PT sessions. Don’t get me wrong, I (as the wife of a former medical student) completely support students being involved in appointments. I think it is incredibly important for students to get their hands “dirty” while still being observed. I think they need to really see what it is they will be doing– I think it is vital for their education. But at the same time, I should probably not attend these sessions. Our PT is wonderful– absolutely wonderful. She’s kind and empathetic and loves the children with whom she works. And yet, she has to teach her student, so she spends the hour pointing out Charlotte’s weaknesses, her trouble spots, the way she compensates incorrectly, the ways she fails to keep up with others. Our PT does this with as much grace and tact as possible, but it’s still difficult to hear.

Image from Blackbird Ink Photography

And so, for the past two weeks, I’ve been in a funk.

Until two days ago, when I spoke with a family who just welcomed a 24 weeker into their family. The following day, they had to make arrangements for his funeral. This family, who only held their baby for a moment–their child who weighed barely over a pound, was picking out a casket.

I also talked to a mom whose baby spent a year–365 days–in the hospital before he died. He came home for two weeks, a lovely two weeks of hospice. This one year old never slept in the crib his parents purchased for him. Never used the diapers they had been given, never played with the toys purchased as shower gifts. She talked about how she spends her day, dreaming that he is still apart of their lives. It’s too painful to look outside, and see the bench she was sitting on when he died in her arms. Instead, she spends her day thinking of him laughing as he goes down the slide, or giggling as his sister chases him around the yard. It’s what she has to see to grieve.

image from Blackbird Ink Photography

Suddenly, my gripes about Physical Therapy didn’t seem so important.

My frustrations about the pain and suffering I go through as I deal with Charlotte’s special needs seemed a little misplaced.

My pity party seemed ugly, and my whining, even to myself, was getting old.

In the grand scheme of things, we have it more than just pretty good.

We have it really good.

Really. Really. Good.

Dear Charlotte

Baby Girl,

I’ve been working on a project for the March of Dimes for the past few weeks. We’re going to go to a big dinner and ask people to please, please, give money to help fund the research of prematurity. We’re going to show pictures and tell stories and tug on their heart strings a little.

But you know what I really want to tell them?

I’d take away prematurity in a minute if I could. I’d rewind the past 19 months and give an arm or a leg or a vital organ if it meant you didn’t have to suffer. If it meant that you could be transfusion free, surgery free, and therapy free. If it meant that you didn’t have to endure painful procedures, I would take it away. I’d take it away if it meant that your body would work the way you want it to. The way your beautiful smile indicates you want it to.

I’d take it away.

I’d gladly walk away in ignorance, becoming one of *those* moms who complains about being 9 months pregnant. I’d give away all the character I’ve developed, all the compassion I’ve received and all the knowledge I’ve gained.

In an instant.

I’d go around to those grieving mothers who have placed their children in graveyards and I’d allow them the chance to hold their babies. To love them, to raise them, to get to know them. I’d offer them a full term, plump little child and I would put neonatalogists out of business.

If I could.

I would wipe the memories of parents; wipe them of those awful terrifying months in the NICU. I’d allow them to walk out of the hospital with balloons and a baby only days old. I’d take away the moments of fear, the decisions of life or death, the lonely hours sitting by an isolette. I’d grant families a life free of Occupational Therapy, Feeding Therapy, Speech Therapy, and Physical Therapy.

I’d give them more.

I’d give them the chance to sleep peacefully at night. To not cringe anytime someone sneezes, or worry anytime a child gets a cold. I’d give them the chance to be silly first time parents, to worry over things like the perfect kind of sunscreen, or the detergent with which they wash their clothing.

I would miss somethings.

I would miss the incredible people I have met along the way. But I bet they would trade my friendship for a healthy child in an instant, too. No hard feelings. I would miss the joy I have from seeing an accomplishment or a milestone met. But I know that you would still be the wonderful, happy girl that you are.

Because that’s who you are. Prematurity is something that happened to you. It does not define you. It does not make you who you are.

So yes. I would take it all away. Every last single bit of it. But since I can’t, I’ll take you just the way you are.

And I’m at peace with that.

Momma

Why Preemie Parents Go a Bit Crazy This Time of Year

Last week I wrote about our experience last fall when Charlotte went into septic shock.

Here’s the nitty gritty of what you should take from that post. What brought Charlotte into the hospital was not a rare or mysterious disease. Enterovirus made her ill initially– something that millions of people catch each year. It was most likely brought home by Caleb, or Peter, or me, or any of the nurses. (But probably Caleb. That’s how germs roll. They like preschoolers) Most people who get it, get sick, want to lay on the couch all day, but somehow pull themselves together and just complain about it on Facebook.

But with preemies, especially those who have an oxygen requirement and are in their first two winters, small illnesses can ravage their bodies and wreck their immune system. Regular, average illnesses can weaken their bodies so much that they simply don’t have any strength to fight back. Their bodies are working so hard to function at a basic level, merely breathing and keeping their heart pumping can use all the calories they consume in a day. Really. That’s why most preemies need a high caloric formula to meet developmental goals. They can’t waste energy rolling over, when they need it just to breathe.

Because Charlotte was so depleted from the Enterovirus, she was much more susceptible to illnesses that our bodies would normally easily defend. The reason it took so long for them to identify the bacteria causing her sepsis (a secondary infection to her enterovirus illness) is because that bacteria rarely infects people. Our bodies are usually very, very good at defending themselves from serious illnesses. Sure, we get sick all winter long, but rarely do we end up with blood infections. Because our bodies are capable of fighting off those illnesses.

But preemies are not. So when we beg you to get your flu shot, or we decline a visit from October to May, or when we ask you to take off your shoes and use the hand sanatizer before we even say hello, it’s because we know what “could” happen. We might strip our full term children down and make them bathe as soon as they enter the house after school, and we might see your kid with a runny nose and ask you to leave. We don’t want to. Believe you me. We want to play hard all winter long.

But we can’t. We know people who have lost their children to the flu, or to enterovirus, or to pneumonia, or to RSV. We know people who have watched as doctors turned off ventilators keeping their children alive. We know children who’s lives have been cut too short by tiny, microscope germs invading their bodies.

Please don’t dismiss us. Please don’t ignore our requests. Please try to think like we do for one day. You’ll see how exhausting it can be. You can think we’re crazy, because, let’s face it, we’re a bit crazy. But anyone who has seen what we have seen– anyone who has watched their child shocked back to life over and over again has earned the right to be just the tiniest bit crazy.

Anyone who has received that phone call, the your-child-has-been-placed-back-on-the-vent call or the I-wanted-to-let-you-know-that-so-and-so’s-baby-didn’t-make-it call has the right to demand that you protect their child.

 

If you don’t want to play with those rules, that’s fine.

Have a nice RSV/influenza season.

We’ll see you again in May, thank you very much.

Holiday

In less than 100 days, families across the country will celebrate some type of winter holiday. In less than 85 days, (fortunate) families in America will celebrate with a Thanksgiving feast, hopefully surrounded by family and friends.

But in 58 days, our family will celebrate something of our own holiday. We’ll join with the March of Dimes and celebrate the first ever World Prematurity Day on November 17. 2011.

In San Diego, California alone, 10.8% of all births are preterm, meaning close to 5500 births a year never reach term (50,623 births per year). Approximately 3,500 babies in San Diego each year are born at a low birth weight and over 9,200 pregnant women receive late or no prenatal care during pregnancy. Even more devastating? Over 250 families in San Diego bury their children each year before they reach their first birthday.

That’s 250 mothers and fathers, at least 500 grandparents, and untold numbers of siblings who never see a child take their first steps or say their first words. Who never get to pick out a backpack for the first day of school, or watch that child in an elementary school play. That’s 250 classmates, friends, and teammates who are not impacting your own child’s life.

Now let’s expand that. What about in Los Angeles? Las Vegas? Salt Lake City? Phoenix? Denver? Dallas? St. Louis? Chicago? Milwaukee? Philadelphia? Washington DC? Tampa? Boston? Seattle?

What about in Paris? London? Dublin? Moscow? Berlin? Hong Kong? Johannesburg? What about in villages you have never heard spoken of before? Or cities with which you are intimately familiar?

What about in your town?

What are we going to do about it?

It’s not just some unknown threat. Prematurity is the number one killer of infants. Studies released this week show that premature children have a higher risk of dying in childhood up to age 5. From ages 6-17, that risk evens out with full term children. But here’s something that’s a bit frightening: in young adulthood, ages 18-36, prematurity comes back as a factor that greatly increases one’s risk of death. You never outgrow prematurity. One can adjust, one can learn to compensate, but you never outgrow it.

We’re not just talking about something that might happen. Prematurity does happen. It happens to everyone. To those who receive prenatal care, and to those who do not. To those who use drugs, and to those who do not. To those who have had full term children and to those who have not. To those who read every.single.parenting.book and to those who do not.

It happened to me. I lost nearly half of my pregnancy to prematurity.

It happened to my daughter. Born at almost 24 weeks, she spent 26 weeks in the NICU before her first discharge home. More weeks inside of an intensive care unit than in the womb.

Prematurity affects my son, my husband, my parents, my in-laws, my aunts, my uncles, my grandparents, my siblings. They have not only watched us experience this world of prematurity, they themselves have had to experience watching their granddaughter, or niece or cousin or friend go through the experience of prematurity.

Prematurity affects you.

So what are you going to do about it?

Join with us in celebrating World Prematurity Day.

Visit you local NICU, take the nurses some food and give them hug from me. Tell them how much they mean to the families who are affected by prematurity.

Support the March of Dimes. Research from the MOD provides insights that are invaluable to helping preemies survive.

But survival is not just for preemies, parents need help surviving as well. Support other foundations such as Graham’s Foundation, and Friends of Maddie, both of which support families by giving care packages to parents of preemies.

Make a donation to Miracle Babies, which helps provide financial aid to parents of children in the NICU. I know times are tough, but $20 really can change a parent’s life. Knowing that someone out there knows of their struggle can be the light that gets them through the day.

Donate a $15 gas card to your local NICU and have them give it to a family who drives a great distance to see their children. Ask your friends, family and co-workers to do the same.

But more than that, let’s start talking about this. Let’s make it a national and worldwide discussion. Let’s start fighting prematurity the same way we fight heart disease and breast cancer.

Sign up for Bloggers Unite, and on November 17, write a blog post on prematurity. If you have a premature child, share your experience. If you don’t, write about what it is like to watch someone else go through it. Every view point is valid. Write if you are angry, if you feel blessed, if you are confused and if you feel confident your child will be fine. Write if you have lost a child, and if your child has survived. Write if you work with preemies or if you have never even met one. Just write. Share the word. Spread the message.

In the amount of time it has taken you to read this, at least four children have been born prematurely. Four parents have watched their child taken away to be evaluated by a neonatologist. Some of those parents will hear that their child is perfectly fine, that all is well. Some may watch their children rushed to the NICU. Even still, some may hear that there is nothing else that can be done.

But there is something that can be done. We can unite. We can reach out, we can touch others and help them to know that they are not alone, not forgotten.

Don’t just read this and move on. This is your responsibility. This is your fight.

We have to be the ones to fight–because babies shouldn’t have to.