Wednesday, November 17, 2010

Awareness

Today is November 17. November 17 is National Prematurity Awereness Day. The March of Dimes has asked bloggers to blog for our preemies in honor of this day.

Last year I spoke about what it really means to be a preemie; that a preemie isn't just a small baby, but an unfinished one. All of his systems are underdeveloped leaving him at risk of infection, disease, and overstimulation. But it doesn't just stop when those systems finish developing.

The damage done to a baby born early is not easily overcome. For a baby like Robbie- not "just" a preemie, but a micropreemie- it can often take years before he will be able to catch up from the damage done to him. For Robbie, it means that almost every accomplishment he makes comes with an asterisk. Even when it goes unspoken, the implication is there.

When someone says how big he is, they mean in comparison to the pound and a half he was born at. He still hovers at the bottom edge of the growth charts. He is significantly smaller than children even more than a year younger than him in his daycare class.

When they comment on how well he's eating, they mean compared to 6 months or a year ago when 100% of his nutrition had to be pumped directly into his stomach, not to other children his age. He still has an extra hole in his stomach by which we keep him hydrated enough to live.

When we talk about how active he is, we marvel that he's doing so well now considering a year ago he wasn't even rolling over. Two and a half years later, we still struggle to overcome the damage his body sustained in being born 14 weeks early. He still gets daily medicine to treat his hypersensitive stomach.

We still fight the damage done to his lungs by being born before they were done developing, from the pressure put on them from the ventilator that kept him alive until he could breathe on his own. He takes a breathing treatment of steroids every night all winter because even a slight sniffle goes straight to his lungs causing him to gasp and wheeze. When he gets that sniffle, we double that dose and add another drug to dilate the passages in his lungs so that he can breathe.

He's come a very, very long way. We've gone from seventeen sessions of therapy a month to just 9. We only see one specialist every 4 months instead of the sometimes weekly treks we made during our darkest times. He no longer receives calories or nutrition through his G-tube, just hydration. He's going through a language explosion, beginning to communicate with us with more than just whines or grunts or the occasional sign. But he isn't done yet.

As his mother, I'm not sure I'll ever overcome the anxiety that prematurity brought to our lives. Even if he woke up tomorrow completely caught up, I would still over analyze small things, wondering if it's another symptom of his early birth. When he squints one eye to point at something, his therapists write notes about checking his vision- the effects of the oxygen on his eyes could show up at any time. When he resists a textured ball, it's called a sensory problem attributed to his nervous system experiences too much too soon. As his mother, I know in my head that these are just cute quirks that are part of Robbie, but the fact that they come into question is just another gift that prematurity has given us. I watch closely, balancing a fine line of vigilance and security.

Of course, being a mother to a preemie brings a lot of unique pleasures. Tonight, Robbie sat on my lap letting me feed him bites of steak & carrots while I fought tears of joy. I'm not sure I'll ever stop marveling at the pleasure of seeing him thrive. It's something that parents of children born knowing how to eat take for granted.

Robbie's birth also brought a lot of amazing people into my life. From parents of babies in the NICU with Robbie to other parents I've met online, I'm blessed to be surrounded by parents who also marvel in the small things (and I don't just mean the size of our babies!)

The experience of parenting a child who was born early or spent a long time in the NICU is unique enough that early this year I founded a message board for parents of these babies born too soon. These other parents have been a huge resource for us. While we all lean on and appreciate each other, the one thing we all agree on is that it's a club we wish we never needed to join. We are a sorority whose initiation is worse than any hazing the Greek system could imagine. We all dream of a day when we can close our membership.

Currently one in 8 babies born in the U.S. is born too soon. Each day nearly 1500 families give birth to a baby who will come with extra scrutiny and worry; a baby who comes with asterisks with even a question as simple as "how old is he?" It's a club that's way too large.

So on this day, I ask that you think of our babies. Right now at a hospital near you, a mother is wringing her hands, staring at a monitor instead of her baby's eyes. She's praying they can all make it through the night. She's wondering about today, tomorrow and next year. She's feeling guilty, wondering if she could have done something different. She's looking into the faces of the strangers caring for her not-yet-supposed-to-be-newborn, hoping they know how important that tiny bundle hooked up to all the wires really is.

These worries are real. Many babies don't make it. Many have issues that won't be outgrown. Many will, but only with a lot of hard work and worry.

We are very blessed that Robbie's lingering issues have been manageable. He is expected to outgrow them, though no one can say when. God and medicine, and the March of Dimes, has given us the opportunity to see our miracle's smile and hear his laughter every day. Not everyone is so lucky.

--Trish

19 comments:

Erin said...

This is a great post. I think as a mom whenever there is something wrong with your child you will always analyze everything to see if it caused by something you did "wrong," but was truly not your fault. For nursing school tonight I am going to a long term skilled nursing facility for children, some of these children were born premature and didn't do well. I bet their parents wonder all the time.
I like that that a premature baby isn't just small but unfinished. I hope when I am in the NICU in the next few weeks I can offer some support to the parents.

Hunter's Mom said...

Trish, you did an amazing job with this post. I pretty much want to just cut and paste it on my own blog (but of course I won't!) I can relate to almost every single thing you said.. and that 1 in 8 new moms will also be able to relate is a sad thing. Thank you for this post.
-Karen

Christi said...

Beautifully written and articulate as always. Spoken from the heart of a preemie mom.

Anonymous said...

So, so true Trish. Great job. I know I still sit and watch my little miracle in amazement on a daily basis and just smile at her and what she's up to. I think that is one small blessing - we don't take things for granted. We relish every itty bitty tiny thing they do and even when they aren't really doing anything - we sit and just watch and smile.

Darby

chipz95 said...

Beautiful writing as always, Trish. Thinking of you guys today. Give Robbie a big hug for me!

Two Hands said...

Awesome awesome post.
I will be thinking of your sweet Robbie next week when I work in the NICU for the first time.
xoxoxoxo

gina said...

So great Trish! Thank you for speaking from your heart yet again.
Being the mom of monoamniotic twins that did not make it I often wonder what would have been. These babies are a unique group, the mothers are monitored with inpatient hospital care starting at 24 weeks. The babies are taken at any time a problem is detected and not allowed to 'cook' past 32 weeks. My sons died at 20 weeks but not a day goes by that I do not think of all the moms who have to deal with prematurity. I hope that we can continue research and development to not only bring more babies home but to keep babies 'cooking' where they belong.

The Blatchford Family said...

Great post Trish. As a mom who has never had a preemie, but has a child with special needs, a lot of what you said I can also relate to. The therapies, eating issues, questioning what the future holds, and what could have been done differently in the past...ahhh!

The thought of what a miracle Robbie is, and how far you all have come since his birth, brings tears to my eyes. Keep up the great work momma!

Trish said...

Thank you all for the kind words.

I'm glad it spoke to you. I worried it was too negative, but I felt like I needed to focus on the seriousness of prematurity.


Karen, you are welcome to copy & paste it to your blog, just credit me.

Amy said...

Beautiful post. You made me cry, again. ;)
Wearing purple for you guys today!

Searching said...

Carrots and steak!! Good job, Robbie!!

Trish, this was beautiful, true, and needs saying.

Georgy said...

As always you say what I'm feeling but 100 times better; excellent post!

Tracy said...

Thanks for sharing this with us.
::tears:::

MoDLin said...

Thanks again Trish for your wonderful post and for all the support you give to the March of Dimes.

Anonymous said...

that was a good thing fertilehope.blogspot.com

Azaera said...

Beautiful post.. The end part took me back to the NICU. Two years ago today I would have been sitting in the NICU watching Skyler sleep or squeak like a kitten because he couldn't cry yet, wondering if he'd ever make it out alive.

Tulsa Court said...

I think real is really really good. Thanks for really sharing your reality

Heather said...

Great post! All three of my children were premature. Phoebe was 4 weeks early and "the boys" were 9 weeks early. I can't even imagine some of the things you guys and Robbie go through, as we just have a touch of the issues you have to work with. The boys' therapy sessions are going down, Liam is still a picky eater and Tommy still needs reflux meds. But things are so much better than they were a year ago.

El said...

I love this post, Trish. Asterisks are the perfect way to put it. Seth was only six weeks early and he has asterisks galore. I am so glad you guys are doing so well...I think of you often!