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
