Friday, November 16, 2007

Fashion Show Speech

My pregnancy seemed to be a pretty normal one. John and I had been married for 6 years, and were elated at the idea of adding a baby to our family. We planned the pregnancy, and put a great deal of thought and research into the type of birth we wanted to have. I received prenatal care from a well-respected midwifery practice, had regular check-ups, ate all the right things, avoided caffeine and alcohol and second-hand smoke, and basked in the glow of my pregnancy. I loved my growing belly, and felt overwhelming joy every time I felt the baby move.

It wasn’t until almost 24 weeks into the pregnancy that my world came crashing down. I began feeling poorly, and started to wonder if the pain I was feeling could possibly be contractions. Just after arriving to the hospital, with absolutely no idea of what was to come, I received two of the biggest shocks of my life. First, I found out I was having TWINS! Second, I was in labor and already dilated to 4cm.

Holland and Eden were born four days later on July 31st, 2004, 16 weeks too soon. At birth they weighed 1 pound 3 ounces, and 1 pound 5 ounces, and were just under 12 inches long. They were perfectly formed, and to me, already beautiful. There was no infection, no abnormalities, and never an explanation for why they came so early.

We were told prior to their birth that the chance they would both survive was slim, and that IF they did survive, it would likely be with some degree of disability. Looking back now, I don’t think that this information ever really sank in. We knew from the beginning that we desperately wanted them, and that we would love them whatever the outcome would be.

Prematurity is not something you can plan for. It is something that you gloss over when you are reading “What to Expect when you are Expecting.” You think that it won’t happen to you, that it CAN’T happen to you. When it does, it is just pure luck that lands you in such a place as the NICU at St. Joe’s. Our girls spent the first 110 days of their lives in the NICU. During that time we certainly had some very long and very sad days. Both girls were transferred out for PDA ligation surgery on their hearts. They both underwent laser surgery on their eyes for retinopathy of prematurity. We lived through more than one infection, one which Holland almost didn’t survive. Both had some degree of bleeding in the brain. Both needed a lot of coaxing to learn to eat and grow. Many people refer to the NICU course of a 24-weeker as a roller coaster. I don’t like that analogy because we choose to go on roller-coasters and we enjoy the thrill. There are no thrills in the lows of the NICU… just grief and devastation.

But our time in the NICU was also filled with small moments of happiness, and even times of great joy, many of which were made possible and enhanced by the staff who worked with our babies. I clearly remember the nurse who asked if I wanted to hold each baby for the first time, and how much work they would do to get us ready for kangaroo care. I remember the care with which they taught us how to touch our babies, how to change their tiny diapers, how to take their temperatures. I remember a special nurse who would take pictures of them doing cute things at night, when we weren’t able to be there, and taping them to the isolette to surprise us when we came in the next day. I remember the excitement of our rescue team who came to another hospital to pick Eden up after one of her surgeries, and how happy they were to have her back safe and sound. I remember the doctors giving hugs and high fives when Holland’s platelets finally went back up following a nasty infection. I remember, when things were slow in the NICU and our babies were doing well, doctors sitting with us to chat about good places to eat. I remember them listening to our endless questions, and sitting down with us to draw diagrams to help us understand complicated medical issues, never annoyed by our incessant attention to detail. I remember the nurse who helped us give their first baths, and dressed them in real clothes for the first time. I remember the support and encouragement they gave me in pumping and attempting to breastfeed, and how they kept me motivated by always oohing and aawing over the calorie content of my milk. I remember them crying with me over the loss of another NICU baby that we had befriended, and how I realized then that these babies are so much more than a job to this NICU staff. They really and truly care about each baby and family, and they make each tough medical decision just as they would if it were their own baby. I remember that I felt loved…and I don’t think you can feel like that in the NICU of every hospital.

Holland and Eden are three-year-olds now. They are vibrant, loving, and smart, and they are the joy of my life. Our struggles did not end when we left the NICU. We went home on oxygen, and monitors, and with countless doctor appointments for the first 6 months. Holland has had ongoing issues with her lungs and her vision. She has had surgery on her eyes, and has been hospitalized several times with pneumonia and respiratory illnesses. She has been diagnosed with mild cerebral palsy, and did not start walking until after she was two.

Eden was diagnosed with profound bilateral hearing loss at 6 months of age, and underwent a cochlear implant surgery when she was 14 months old. She has more severe cerebral palsy, and will likely never walk independently. Both girls have had ongoing issues with eating and growing, and feeding them has always been a source of worry and stress.

While I feel like it is important for the general public to be aware of the ongoing issues that extremely premature infants face, I really hate listing their disabilities or medical issues when describing them. Terms like “chronic lung disease,” or “profound hearing loss,” or “cerebral palsy” do not give you any insight into the little people that they are becoming. Those things are such a very small part of who they are. I’d rather tell you about how Eden’s smile lights up a room. About how they both say “I love you Mommy” and give the absolute BEST hugs and kisses. About how their excitement over the simplest things is completely contagious. About how they love to play ring around the rosie, feed our dog way too many milkbones, and each hold one of my hands while we walk around the living room pretending were going on an adventure. They love to dig in the sand, run full speed through the sprinklers at the water park, sing along to their Elmo videos, and think we are the absolute best parents ever for taking them to meet Clifford the Big Red Dog.

I am not a person who believes that everything happens for a reason. Sometimes bad things just happen. What I DO believe, is that when bad things happen, we can become better people because of them. We can learn and grow from them. We can take the negativity and turn it into something positive. I am a better person because of my kids and what have gone through following their traumatic birth. I do not take life for granted. I don’t sweat the small stuff. I have learned to appreciate every step of progress they make, no matter how small it may seem. I am better able to support people who are going through similar circumstances. I am more compassionate, and a better advocate for my children’s needs than I may have been otherwise.

I addition to all of that, I have had the opportunity to meet so many incredible people that I would never have known otherwise, and my life is richer because of them. Thank you so much to the NICU staff of Saint Joseph Mercy Hospital. For the dedication and compassion you show to the babies and families you care for. And for giving us so much to be thankful for.

43 comments:

Sarah Furlough said...

What a beautiful speech, Billie. I got choked up while I was reading it. I know you are so grateful to St. Joe's for everything they have done for H & E, as well as you and John.

What a great job, I knew your speech would be great!

Jennifer said...

Billie,

I learn more about prematurity and parenting a preemie from your blog than any other.

I seriously hope that some day I can be the mom you are.

Congratulations on all your/your daughter's accomplishments - you are all an amazing family!

Tertia said...

You just made me cry in the coffee shop. Thanks buddy.

This is one of the most beautiful things I have ever read. I am so proud to 'know' you.

xxx

Michelle said...

Such a beautiful speech! Your daughters are lucky to have such caring parents (and you're lucky to have such beautiful, loving daughters!)

Anonymous said...

Billie,
What a wonderfully beautiful speech. It brought tears to my eyes. I am sorry that I was unable to attend; I missed an amazing night.
Hope to see you and the family soon.
Dawn

23wktwins'mommy said...

Excellent speech! Of course it made me teary :)

The Walsh's said...

Gorgeous speech. I was about to make it through without a tear and then James Taylor started singing on Ellen and the background song while reading the last paragraph brought on the flood.

You're so wonderful with words, and even better with your kids.

Stacey said...

Bravo! Very well written.

Jacolyn said...

Beautiful!!!

Monique in TX said...

Hugs to you and your whole family!

Anonymous said...

I have to admit, I got teary-eyed, too. That is a great speech, but of course we all knew it would be fabulous. Wow!

Amy

Pam said...

What amazing insight, and an excellent speech... I'm sure you brought down the house (or raised the roof, or insert whatever colloquialism you think best). In any case, I'm sure there wasn't a dry eye in the place!

I am in such awe that you can write so wonderfully and positively about your experience of "being loved" within the NICU, knowing how much love you have given to your daughters. And you are absolutely right that not all NICU's are able to have that profound or supportive of an effect! (Man, I wish I had known to check out the NICU's when shopping for a birthing hospital!)

pattyo said...

What a beautiful, touching speech. I have tears in my eyes.

You're an amazing advocate ... but an even more amazing mom.

Antonia said...

I don't think it is possible to read that without crying, if I could, I'd give you a hug...that is so beautiful because you can tell it's from the heart. I have already talked to my mom about it, and we wondered is there a way to donate money to this hospital? To keep it alive? You are a remarkable parent, I can only hope and pray that when i have children I am close to what and who you are thank you for being a light for all of us!! Yes, you really are, an amazing family

Laura Gilmour said...

I knew you'd come up with a wonderful speech. You always do such great blog entries. I'm proud of you and your girls.

Amy said...

Of course I cried when I read your speech. You've always had a way with words. It was a blessing you had such a supportive, caring staff looking after your little sweethearts. Obviously, they must think very highly of you, too, since you were asked to be the "face" of NICU parents from their hospital. Well done.

Mel said...

What a beautiful and touching speech! You've done a great job:)

Laura: Preemie Lily's Mom said...

Wow, Billie.

My micro-preemie was born at 25 weeks (though the doctor estimate a little earlier, probably 24 and a few days, because her development at her birth). We also delivered at a hospital named St Josephs, and truly had wonderful NICU people. We also cried at lost babies in the NICU, and cried happily when people got to take their little ones home.

I'm glad you can say the things so well which we Micro-Preemie parents want to say.

Anonymous said...

Billie, that was such a wonderful speech. Your children are so darn lucky to have you as their mommy.

You are a true inspiration!

SusanR

Sarah Erdmann said...

I was lucky enough to see the fashion show and hear the speech first hand. It is a beautiful speech and spoke for so many micro-preemie parents. The room was hanging on every word.

Your girls were beautiful in the show!

Anonymous said...

I am pregnant and stumbled onto your site months ago. I have never commented, but was so moved by your speech. It is so admirable how strong you are and wish you all the best.

e in Canada

kristin said...

Your speech had the same effect on me the second time I read it. Geez!
I am in awe of your map in the bottom right hand corner. I can't believe your so internationally famous. Your meant for the job of blogging to the masses.

kellarsmommy said...

Great speach and like everyone else has commented definitely a tear jerker..

Anonymous said...

Beautiful! Absolutely beautiful, Billie! Also, the pics of the girls and the list of 10 things was great! They are so adorable and always smiling. Cuties!

Hope the speech goes well and things are well at your house!

Think of you often.

Shari
Florence, Oregon

Brandie said...

Hi Billie,

I've been following your blog for several months now. My friend Nicole (nicole-lifeinholland) has you as a link on her blog. Her son was born early at 26 weeks. Just wanted you to know that I am a regular reader now. Before I became a stay at home mom, I worked in downtown Phoenix. My job was in child welfare (I worked with Child Protective Services). God laid it on my heart to pursue a volunteer position with St. Joes Hospital in the NICU during my lunch hour (which ended up being hours instead) several times a week. I had many babies on my case load that were born early due to drug exposure. Just so happened that the hospital needed volunteers in that area. The nurses were all so wonderful. They taught me a tremendous amount about the care of those special babies. At first, my job was just to hold babies them, as the nurses got to know me they began teaching me how to do things to help them. I vividly remember the first time I changed the diaper of a baby in an isolette that weighted less than 2 pounds). I helped with feedings and even completed hearing tests. Never could I imagine that I would meet someone (Nicole) who's son would be in the NICU just a few years later. After getting pregnant with my daughter (almost a solid year later), I resigned from volunteering. It certainly was a life changing time in my life.

You girls are so beautiful, such a blessing to me and you inspire me to be a better mom everyday. I am certainly keeping you all in my prayers.

daisysmum said...

Lovely post. I think even though you specifically write about your own expriences with very prem babies, your words are true for any parent who has taken a child through critical and frightening times;
Bringing my baby through chemo and a transplant were the most horrible days - but each of those long days were blown away by moments smiles or bright eyes, by the glory of life and the gift of children.
Thank you.

Tracey said...

Lovely speech. So glad the girls are doing so remarkably! 24 weeks is incredibly early.. my friend had twin girls at 25 weeks... it is a long road, but you're right: she became an INCREDIBLE person because of it.

Shannon said...

I am so glad that you posted this for everyone to share. You did beautifully on Thursday! My sister is kicking herself for forgetting tissues but felt so privileged to hear your story. All of our buds that came had wonderful things to say about your bravery and strength. To hear your story and see the joy that is your family all in one night touched the hearts of so many (over 430 last I heard!). AND you all looked beautiful! I'm so lucky to have shared the night with such an amazing group of people!

abby said...

This was beautiful, eloquent and memorable. I am glad that you posted it, both for us to read, and also for Holland and Eden to read when they are old enough to do so. They will be proud of how well spoken their mommy is, and what a wonderful advocate she is for them, and for all of us.

So, in a word, Billie: Bravo!

Tammi said...

Well done! Beautifully written and an incredible insight into the struggles and joys of life with your little ones.

Emily said...

Wow. Billie, your speech was so beautifully written, it brought tears to my eyes. You have given me so much inspiration over the last three years...I can't wait to become a neonatal nurse practitioner.

You, John and the girls all looked great in the fashion show. I had a great time; your girls are so fun!

Hope to see you all soon,
Emily

Anonymous said...

Well done - what an amazing speech!!!

You sound like an amazing person who is a wonderful Mom to your beautiful girls.

Amy said...

Great speech :) Congratulations to you for saying it all so eloquently, honestly and with heart.

Your daughters are incredibly spunky little beings. You should be proud of them and all of the time you spend ensuring they are challenged and stimulated. You and your husband (and family) so obviously love and cherish the girl. Very lucky little girls and no doubt equally proud parents :)

They are beautiful children and I have so enjoyed reading of their triumphs. They have SPUNK!

JaneW said...

What a wonderful speech and so heart felt too. I love your attitude, of taking what happens and trying to make the best of it, and allowing it to make you a better person.

My first baby was a baby girl born after unexplained pre-term labour at 25 weeks. She was not treated, and was left with me to die (viability her was 28 weeks at the time). It was heartbreaking, but I have tried to adopt that same attitude, and to learn and grow from tat expereince as much as I can, and to be the best me I can be.

I now have 2 boys(6&8) for whom I am very grateful.

Jennic said...

Hi Billie,

I came here via Tertia's blog.

People always tell me they are amazed at my strength and courage (7 years ago, I had cancer at age 24, just 10 weeks after our wedding, had chemo, radiation and all that jazz) and then miscarriage few years later.

But you, my friend, is what amazing is. Your bio is a lot like me, honest and open, shy in groups etc. I'm so glad for your outlook. It's taken me a long time to learn this, we can't change things that aren't in our control, but we can control how we react to them. And that, makes a big difference. Your heart & soul are golden and beautiful.

xoxo
Jennic
sweetisu.com
KangarooBoo.com

Laura said...

Hi Billie!
Wonderful speech! I really love how you accented how they are more than their disabilities.

I have been reading for a while and never commented. I have a cousin with CP, and various stuff myself. :P You are an awesome writer, and have two beautiful girls!

Recently there was a story in our local paper about a girl with CP who is a cheerleader, and I thought you might like to see it. I can't find the story, but the video is here:
http://siouxcityjournal.videos.vmixcore.com/p/video?id=1562349

Anonymous said...

hi bill!

i haven't written in a while, but i have been reading :-) this one (along with "cute boy") could not be left without comment. I am so proud of you. what a wonderful speech. such honesty and insight. i can't wait to see you all at christmas...xx oo
love you all,
lisa

Kiki said...

I was privileged enough to stumble on this post while linking from blog to blog. I'm a nursing student and I'm planning to work in the NICU when I graduate. It is so wonderful to hear how compassionate and gracious your nurses were for your family. I am planning to keep your story in my mind as I pursue my career - I want to give other families the same care you and your daughters received.
Your daughters are absolutely precious and they are blessed to have you as a mom!

Allison said...

And amazing you were! What a beautiful family and amazing event!

Casey's trio said...

You must have touched and amazed the entire audience with that touching speech. Thanks for sharing it with the rest of us!

Kathryn said...

Billie - GREAT speech. I love all your points and especially of all those touching moments in the NICU- like first baths and the tiny diapers. Also, you are so right about the roller coaster analogy being a bit off. Just excellent speech - you just capture what it is like and how Holland and Eden are so much more than their disabilities so well.

Jo said...

Billie,
You are an inspiration to me, and your daughters are beautiful and blessed.

Jo

Myra said...

Wow! From the mother of boy/girl micro preemies born at 24w5d, your words made me cry because they were just the truth and well, my life. I'm glad you were given the oppourtunity to share your life and that I know it will help others too.