Teeny Tiny Truman

This page is all about Truman, born Aug. 8, 2006 to Kara and Ben.

Monday, December 17, 2007

The final post as promised



CHRONOLOGICAL AGE: 12.25 MONTHS
ADJUSTED AGE: 16.25 MONTHS


I know many of you have been looking for the final post. Sorry for the delay, but I've been traveling some with work, trying to finish up shopping, Christmas cards, and keeping Truman from completely destroying the Christmas tree.

Truman's journey began at 4:38 a.m. on August 8, 2006 when he was thrust into this world 17 weeks before he was due. He arrived suddenly, without crying or taking a breath, weighing 1 lb, 4 ounces and measuring just under 12 inches.
Just before I pushed, we were told that babies born at 23 weeks had about a 50% chance at survival at our hospital (much less in many hospitals) and asked whether we wanted to attempt to resuscitate him. Without even being told, we knew that even with survival, the long-term prognosis was not good. Still, we made the choice prior to his birth to attempt to resuscitate. Although I think we were only given 10 or 15 seconds to decide, it seemed like an agonizingly long time to consider what choice we would make. We later learned that at our hospital, parents are given the choice between 23 and 25 weeks whether to attempt to save the child. We have since learned that our hospital will not make any attempts to revive a child born before 23 weeks. Truman had only "turned" 23 weeks at midnight. Looking back, although we didn't recognize it at the time, I had gone into labor the day before when Truman was only 22 weeks and 6 days. That 4 hours and 38 minutes made the difference as to whether he was given a shot at life.
When he was about 1.5 hours old, we were taken to see him. The first time we saw our son, he was purple and bruised, his eyes were fused shut, and his foot was the length of a single knuckle. He looked horrible. Because his outlook was so unclear, we were allowed to touch him despite its being against protocol. It would be days before we were allowed to touch him again.
During those four months-- 120 days --in NICU, Truman underwent heart surgery at 6 days of age, bowel surgery at 3 weeks and again at 3.5 months, and spent approximately two months on a ventilator and much longer on other less-intensive forms of respiratory support. At three weeks, we were told that he had suffered three severe brain hemorrhages and that he might never walk, talk, or live any semblance of a normal life. We mourned the loss of a "normal" life for our child and for ourselves.
We watched him struggle to live for weeks. When he was two months old, not long after we were finally able to relax a little and believe that he would survive, he was stricken with an infection that remains a mystery to this day that threatened to take his life. I will never forget the call from the hospital telling me his heart had stopped and he was given CPR or the look on Ben's face when I told him. We later learned that his heart did not stop completely and that CPR is given to infants whose heart rate goes to low and threatens to stop.

He was three weeks old before the first time I saw his eyes, a month old before I held him for the first time, a month old before the first time I heard him make a sound, 2.5 months old before the first time I nursed him, and four months the first time he was in our home.

Then finally, on a Thursday evening, we were asked how Tuesday, December 5--his original due date--sounded for a homecoming. I quickly wrapped up at work to prepare for a three-month maternity leave. We scrambled to finish getting everything we needed at home and to finish Christmas shopping and decorating in time to have our own miracle baby home for Christmas.

In the year since Truman has been home, he has surpassed everybody's expectations. He still faces many struggles and will for many years, if not his entire life, but we are working through them and helping to accomplish as much as his will can allow. Indeed, as I've written before, they appear to be just that--issues--that can be worked on, alleviated, and lessened.

In this year, we have spent hours of occupational therapy at Our Children's House and at home working through muscle tone issues with palsy and have moved from a child who struggled to bend his legs to one who is a speedy and expert crawler. It took months, but he finally sat up and now pulls up on and climbs everything in our home. He is slowly starting to cruise. We have moved from a child who grunted (as preemies often do) to one who babbles and has recently learned to squeal. We've moved from a child who was slow to make a fist to one who grabs and can hang onto with a death grip (or intentionally drop) anything he wants.

Even with all of his accomplishments, there are big challenges to face. Just recently, I noticed that, as his pediatrician suspected, he does appear to have a slight lag on one side when he crawled. That means that the palsy and muscle tone issues that gave him such trouble learning to sit may rear their ugly head again when he's learning to walk. He still struggles on a lot of fine motor skills that are the current focus of therapy.

Eating and growth continue to be major obstacles. At a year, most children eat table food and can have entire meals of finger food. Truman will only eat food that is completely pureed or crunchy. He vomits up most everything else. Indeed, vomiting at mealtimes has been a big problem at our house. And, his liquid volume has been alarmingly small in recent weeks. At one year adjusted, his weight is 15 lbs, 12 ounces. The only place he has made it onto the growth chart for his adjusted age is in head circumference. He still wears 3-6 month clothing. His struggles to grow are very stressful for all of us.

He was recently diagnosed by his therapists with sensory integration disorder. As I've written in other posts, it's a catch-all term for a number of issues related to an inability to properly process the environmental inputs one receives and an inability to respond to one's environment. This could cause learning challenges for many years, if not Truman's entire life.

He is delayed in speech. His only word is "Dada," and he doesn't seem to attach much meaning to it. He also doesn't seem to understand as much speech as he should at his age.
But, these challenges are nothing compared to the ones he was predicted to face. Statistically, a third of surviving children born at his gestational age have severe disabilities. A scant percentage escape unscathed. The remainder have mild to moderate disability. We are comfortably in the the latter category and feel so fortunate to be there. Every milestone he accomplishes is something we were unsure he would.

Even with his challenges, Truman is such a happy child and such a joy in our lives. Truman's path is not one we would have chosen for him and one we were unprepared to face. Yet, it is the only path we know as parents. His inauspicious beginning has shaped who we are as a family, as parents, and as a couple. I think we have emerged stronger and better than where we started.
Truman smiles all the time and is curious about his environment. He is mischievous and good at figuring out alternative ways to get to the things he wants -- particularly if they are contraband. He is quite a problem solver, and he appears to be pretty smart. He has a very strong will, but a loving demeanor.
He loves to play and is very attached to the both of us and his pet kitties. Although he's a squirmer all day, he still loves to snuggle and nurse at bedtime and would prefer to sleep next to one of his parents rather than in his own bed most nights. He's got a full-speed ahead personality like his mother and has only two speeds -- full throttle or crash. And, he is super-cute and just makes me melt when he smiles at me or squeals in delight when we play.

We didn't know the full capacity parents have to love, and it still amazes us how someone so small can mean so much. And, I wonder if the parents of children who have struggled to live don't have a little extra understanding and appreciation for the gift they've been given. We truly believe Truman is destined to do something important. If he had been born four hours and 38 minutes earlier .... If I had not turned on the light at just after 4 a.m. that night and seen the blood .... If we hadn't made it to the hospital moments before his birth .... There are so many things that fell into place for this child to survive.
The new blog for family and friends is now up at http://www.trumanborden.blogspot.com/. I will try to remember to invite those family and friends who have requested to be a part, but I am sure I will forget some of you, so please go to the site where you can send me an e-mail and request to be added.

Thanks for all of the support, prayers, and kind thoughts for our little miracle and for our family.


--Kara

19 Comments:

Anonymous Anonymous said...

Dear Truman,

We've been cheering you on and will miss the updates about you, but suspect your parents are right - we'll all hear more of you one day!

Best wishes from London,

Jack, and his mom and dad.

(We think of Truman whenever we read If by Rudyard Kipling to Jack -

"If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on!"
(...)
"If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son")

1:00 PM  
Blogger Michelle said...

Kara,
I am neither family nor friend, but would love to get to visit Truman's world in the future. I have a Truman, too.

kmichelleross@yahoo.com

1:45 PM  
Anonymous sarah said...

Kara,

I have been following truman since the beginning and he has given so much hope and inspiration to me and my husband. We have micropreemie twins who were born at 25 weeks. When I am hysterical and crying, I read about Truman and we do not feel as alone in the world. You also show me the path that I feel will help my little girls. If you could add me to your blog, we would be so grateful... sh4430@aol.com

Thanks again and I am so incredibly proud of Truman - you are right - he is destined fro many great things.... Love, Sarah

5:49 PM  
Blogger Crystal said...

I am going to miss reading your post. Thank you for the last post, I agree that parents who have a child that fights for his life "understand", I hope Truman continues to do well and grow for you. Good Luck!!
I hope that you don't need them, but if you ever need prayers please e-mail me, you don't have to say what for just that you need them,
Crys82g@aol.com

5:55 PM  
Anonymous Heather, Alan & Jack said...

Dear Truman,
Happy Birthday! Our Jack cannot wait to be playmates this summer. And don't worry about size, he was born on his due date and is 2 weeks older than Truman's adjusted age and still wears 3-6 month coats and sweaters. :)
We love you,
Heather, Alan & Jack

6:49 PM  
Blogger Kathryn and Tim said...

Kara,
Wow-What a year! I first heard of your blog on the BBC Dec. 2006 babies board and have followed Truman's progress ever since. My son was born on Truman's due date, December 5. Thank you for sharing your incredible journey with us. Your great strength is an inspiration. I will miss hearing updates on Truman's progress as will many others. He has overcome so many odds! May God continue to bless you and your family. If you do include those who are not close family and friends into your blog, please include us as well, tfdinero@gmail.com.
Kathryn

8:42 PM  
Anonymous Anonymous said...

Just another total stranger who found Truman's story in cyberspace. He's come a long way. Thanks for sharing. Best wishes to all of you.
Cindy

9:07 PM  
Anonymous Stephanie said...

I am a friend of Mary Beth and Brian's and have followed Truman's story from the beginning. What an amazing child you have!! If you are comfortable, I would love to continue to follow his journey.

steph92504@gmail.com

9:27 PM  
Anonymous Anonymous said...

Thank you so much for allowing me to read about and pray for Truman to this point. I have enjoyed checking for updates as I have a son who's close to Truman's adjusted age. Truman is a beautiful, beautiful blessing, as you well know.

10:33 PM  
Blogger Hunnybee said...

I just want to thank you for sharing Truman's first year with me. Though my two children were early (not as early as yours) this blog gave me great hope to what obstacles could be overcome for my youngest. I'm sadden a bit by no longer learning more about Truman but I completely understand your reasons and I wish your family the best in the many many years to come.

8:18 AM  
Blogger mtomecko said...

Thank you so much for your blog of Truman. I gave birth to twins @ 23 weeks exactly...unfortunately, I lost one after 2 days, but my other son is growing and getting big. Your family has been an inspiration to my husband and myself. When we think all hope is lost, we think, if Truman and his parents did it, so can we. Thank you for sharing your life with us.
My e-mail is mtomecko@yahoo.com if you feel comfortable having us. If not, totally understandable.
God bless & Merry Christmas!
Michele

11:01 AM  
Anonymous Anonymous said...

we were together on the dec exp board you were 5 days due b4 me and since the day truman was born i have followed his life thru this amazing blog it will be sad to see him go but i wish you all nothing but the very very best thank you so very very much for sharing trumans path with us all i hope one day i will ctch up with you all again and see how truman is doing!!! merry christmas to you all kylie (kainesmum dec 06)

jorjabryant@xtra.co.nz

5:27 PM  
Blogger Jen said...

Kara & Ben,
A friend directed me to your blog more than a year ago, and I can't believe it's already been a year since Truman came home! I have read your posts in amazement and with such admiration for the strength the two of you have shown in the face of such adversity. Truman's story is so powerful, and I have cried and celebrated along with you, though we've never met and in all likelihood never will. Truman is a beautiful, blessed little boy...particularly to have the two of you as his parents. I wish the three of you all the best as you continue on your journey... Merry, Merry Christmas!
~ Jennifer in Brockton, MA

10:49 PM  
Blogger Jen said...

Merry 2nd Christmas Truman!!! I appreciate you allowing me to read about your true little miracle and would love to continue if you would allow.

jenluna6@gmail.com

thanks and happiest of holidays!

11:26 AM  
Blogger Ana Melissa said...

Truman, I will miss you and your most wonderful parents. I am sure that we will hear great things from you. I hope your mom comes by this blog once in a while to keep your fans all over updated on your amazing journey! Hugs and blessings!
Ana Melissa

4:58 PM  
Blogger Aidan's mom said...

I have followed Truman's story as well and wanted to wish you all the luck in the world. I will hold all of the preemies and their parents in a special place in my heart as I watch my own preemie grow and learn. Best wishes!

2:41 PM  
Blogger Michelle said...

Kara,

There are many children who are born with a death sentence...Moses was one of them. Yet, the power of God saw him through it all to accomplish GREAT things! In reading your comments and knowing the power of faith, Truman is already showing signs of greatness and defying the standards for children like him. I am so proud of you and Ben for sharing your experiences with such positivity and courage. I will definitely pray for your family; although, you are already being blessed. Take Care! M.Kiner

5:58 PM  
Blogger Kya said...

It's been a long time since I was here but maybe you'll remember me. I am far away, in Portugal (Europe), and I knew about Truman from my Dec2006 board on Baby Center. My son was due the same day as Truman, so I was shocked to hear a baby so small could have been born already. We do not know each other, but I did suffer for you all, cried when I saw the pictures of when Truman was held for the first time, prayed for you. My daughter would ask me everyday about the "baby in the box" I had shown her on the Internet. We followed your life as we could. Of course, then our little one arrived, on November 24th 2006, and time hasn't helped us to keep coming in to check on Truman so often. Still, I remember him and I keep praying for him.
Truman, I am sure you were meant to be here. You may not believe me but you have made a difference in my life and in my childs'. For that, I just know you will be ok and will grow up to be a fighter (you already are). I wish you many years of life filled with joy, love and health. Mom and dad, I look up to you for holding on so well in such a tough situation. All of the best. Kya, mom to Gil & Ana (kya2005@gmail.com)

9:16 AM  
Blogger *Peach* said...

I just found your blog from Kayleigh's blog and it is bringing back such memories. My son, Andrew, was born in '05 weighing 1.4 pounds also. He is now 4 years old and doing well. He has sensory issues and speech delays, but is doing good. I am so thankful for him. Your little guy is adorable!

9:28 PM  

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