Update and request to support Team Truman in the March for Babies

I know it's been more than two years since we've updated this blog. I come to offer an update on Truman and an appeal to support Team Truman in our fundraising efforts for the March of Dimes March for Babies.

First, an update. Truman is doing amazingly well. He still faces a number of challenges and will for a long time, but he has far surpassed everyone's expectations for him. He is a beautiful, happy, and healthy little boy who is learning and discovering new things every day. He began walking just before his second birthday and starting talking around his third birthday. After almost no speech for the first 34 months of his life, his speech progress is now exploding. He still has a long way to go to catch up to the speech of his peers, but is making progress on a daily basis. We have worked through major feeding disorder issues over the last two years, but Truman made huge strides during an intense feeding program last fall.

He is now 3.5 years old, weighs a little more than 26.5 pounds, and is 35 inches tall. He loves trains, dinosaurs, and cars. He is in constant motion and is very affectionate. He likes to count everything and name their colors. He has become a brunette and still has his gorgeous smile. He calls himself "Tru" and has a penchant for filling his pockets with small toys, much to the dismay of his preschool teachers.

Now, for the second reason for our post, please help support Team Truman in the March for Babies coming up in about three weeks http://www.marchforbabies.org/kaltenbaumer

Access to New Blog

I have just realized that you cannot submit a request at the new blog to be added. Please respond to this thread or e-mail me via this blog to my hotmail account and ask to be added if I have forgotten to invite you.

Sorry for the confusion.

Edited to Add: We've had several requests from loyal blog followers and friends of friends to be added to the new blog reader list. However, we really are restricting it to friends and family whom we know. I do apologize, but it's what we think is best for our family.

Final Photo Post

Before we say goodbye to this blog, we thought we should update the last couple of months worth of photos for you all:

Checking out his new walker toy at Gramma and Daddy Davis's house.

Mischief in the bathroom.

Happy about cheese crunchies.

Inspecting the leaves in the front yard.

Checking out the Christmas ornaments. Notice the pile of ornaments on top of the box.

Truman was a Holstein calf for Halloween.

Checking out the candy for the trick-or-treaters.

Showing us it's time to babyproof.

With Mama at the Arboretum.

With Daddy at the Arboretum.

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

Homecoming Anniversary

Chronological Age: 16 months
Adjusted Age: 1 year exactly

Today marks the anniversary of Truman's homecoming and his due date. It's an odd day emotionally, but feels far more celebratory than his birthday did.

I know many of you are looking for a final post today, but I'm a busy mama and plan to make the final post this weekend recapping Truman's journey and put a link to the new password-protected blog for friends and family.

--Kara

Pedi Appointment

CHRONOLOGICAL AGE: 15.75 MONTHS
ADJUSTED AGE: 11.75 MONTHS
WEIGHT: 15 LBS, 12 OUNCES
LENGTH: 26.75 INCHES

Finally, good news on weight! Truman picked up the pace this time to reach a respectable 12 grams a day in weight gain. Still by no means a bruiser, but he gained the same amount in the last four weeks that he gained in the six weeks before that, so a very nice improvement. He also grew half an inch in the last four weeks. And, drumroll please ... Truman's head is officially on the charts for his adjusted age. I can't say the same for length and weight, but he continues on his curve, and we'll take the growth victories where we can get them.

Interestly, Dr. Suterwala noticed that Truman's temples are puffy, which he said are fat deposits from the high-fat diet he's on. So, I guess the fat is doing something -- not quite where you want to see weight gain, but notable nonetheless. We were given a pass to January for the next weight check. Yippee!

In less pleasant news, we had noticed over the last few weeks that Truman appeared to be developing a new hernia along the scar line from his bowel re-section surgery. Dr. Suterwala confirmed that it was a hernia and would likely require surgery someday to reinforce the stomach wall. For now, we'll just keep an eye on it and watch for changes, but I can't bear to think he'll have to go back into a hospital and on a ventilator again for any period of time. I'd like to avoid that as long as possible.

Dr. Suterwala is concerned about Truman's developmental progress in the communication area, in particular, so we'll be having a separate OT eval for his purposes -- a formal "Bailey's" exam. He is also concerned about the texture issues with eating, but not as much so. He also really wants to pay attention to Truman's right side (his grade IV brain bleed was on the left) to look out for any weakness and tone issues that we need to address.

In other therapy news, it seems that things are finally sorted out with insurance, and Truman will begin his second weekly session of OT next week and will also have his PT evaluation next week to get the ball rolling on that. The speech therapists are all booked for evaluations until the end of the year.

In news from home, we got Truman a push toy over the weekend, and he seems to be doing pretty well walking along behind it for a few steps until he runs it into something.


--Kara

No!

CHRONOLOGICAL AGE: 15.5 MONTHS
ADJUSTED AGE: 11.5 MONTHS

A glorious day in parenting -- he understands the word "no" and actually acts accordingly. So, now we can say "Truman, no!" and he will stop the intentional gagging and will pause a foot from the cords. We're still working on him not returning to the same activity 10 seconds later, but hey, at least we get a pause to rescue him from the danger and we're making progress. Considering his penchant for unplugging any cords he can find and then chewing on them, this is a very welcome step!!

Truman also hit another milestone yesterday -- he cruised. It was just a few steps, but he did it!

In the last week, he has also learned to pull up on the toilet lid and toilet paper holders, play with toilet paper, and flush the toilet. No, we're not starting early potting training, he's just discovered all sorts of fun things in the bathroom while Mom and Dad get dressed. That also means that our toilet brushes and bathroom trashcans now live on top of the toilet. And in other bathroom fun, Truman was standing holding onto the side of my tub watching it fill one morning while I was at the sink putting on my contacts. When I went to get in the tub, I found a water-logged stuffed pumpkin in my tub. Gee, how did that get there, Truman?

--Kara

More Teeth

Chronological Age: 15 months
Adjusted Age: 11 months

Truman is currently working on three more teeth on the top. What's weird is that both lateral incisors have broken through, but only one central incisor has broken through. There is no sign at all of the other one. Hopefully it's in there, but lots of preemies have teeth issues and many are missing baby teeth altogether. Fortunately, except for an increased need for braces due to intubation changing the shape of the plalate, most preemies only have trouble with their baby teeth.

In the meantime, I guess he'll have a gap-toothed smile. As a result of the teething, he has definitely racheted up the drooling and tries to bite everything, including us. (Luckily, he hasn't taken to biting while nursing). In a cute teeth anecdote, Truman really likes having his teeth brushed and has started opening his mouth really wide when he sees the toothbrush. We hope he keeps this great habit for his entire life.

He continues to babble "Dada" all day long. Occassionally, we hear a "ca." It seems to be more prevalent around the cats, and Truman's hopeful Mom and Dad think it could be his effort to repeat "cat" which we tell him a lot. I'm fairly certain that's wishful thinking. Unfortunately, "Mama" appears nowhere in sight. In fact, when I say "Mama" to him, he usually responds with "Dada." I really hope the cats don't get a name before I do.

The sleeping through the night pattern appears to have been short-lived. We're back to getting up multiple times a night. Perhaps someday ... a mom can hope, can't she?

We're getting a little more concerned in the eating department. Truman is still refusing most table food and has starting gagging himself to the point of vomiting when we try anything that besides baby crackers, Puffs, hard bread, or similar items, including lumpy pureed foods. There even seems to be some regression in this department, such as mashed potatoes, for example. He's also started coughing to the point of gagging and vomiting a lot more. Besides just the issue of lost calories, we are worried that some oral and sensory issues are starting to manifest in the eating department.

In addition, he just seems to be eating less. Initially, when we introduced solids, he seemed to decrease his milk intake ounce-for-ounce with the solids. Now, for every ounce of solids, he seems to be decreasing his milk intake by more than an ounce. His nutritionist is really pushing three "meals" of solids a day for developmental purposes, and we tried it, but with the increased vomiting and the decrease in overall food volume, we've made the decision to cut back to twice a day and are considering moving back to once a day. We have to pick priorities, and we really thinking packing on the pounds in more important right now than developmental progress in the eating department.

By the way, Truman was a cow for Halloween. I promise to post some photos, but work has been very hectic, and I haven't had a chance to sit down at the computer in our home office and upload any photos. I promise to soon.

I should also let you know that we've made a decision that upon Truman's homecoming anniversary on December 5, we will discontinue posting on this blog and moving to a private blog. We realize there are many anonymous followers of Truman's, but we've decided it's time to let Truman return to the private life of most babies. This blog will remain up as a resource to other parents because we truly appreciated the blogs of other been-there-done-that parents when Truman was in crisis, but we will no longer post here. If you are a friend or family member, please e-mail me or comment on the blog with your e-mail and we will add you to the invite list when the new blog is opened.

--Kara

Slightly better on growth

CHRONOLOGICAL AGE: 14.5 MONTHS
ADJUSTED AGE: 10.5 MONTHS
CURRENT WEIGHT: 14 LBS, 15.9 OUNCES
CURRENT LENGTH: 26.25 INCHES

The weather finally turned in Dallas which means two things: cooler temperatures and changing leaves (which we love) and RSV season isolation (which we don't like at all). Truman continues to be everywhere all at the same time with crawling and pulling up. He has learned, however, how to get down from pulling up without falling, which is a huge relief for us -- a lot fewer bumps on his head and fewer boo-boos to console. We've also finally installed baby gates to the stairs and the area with the cat box and cat bowls, so that makes him a lot easier to keep up with, too.

He continues to "talk" more and more, and although he is focusing on the same syllables, "da" and "ga," he seems to be using them more every day. Ben says he talks a lot more when I'm around than when it's just the two of them. Hmm ... wonder where he gets that from? With only one word and only two syllables, along with the failure to drink from a cup, hold a bottle, or eat any non-crunchy finger foods, we've been given an Rx to start weekly speech therapy.


Truman is currently working on four teeth across the top. It took some Tylenol and three tries over the course of an hour to get him down to sleep to stay Tuesday night, so I think they are definitely bothering him. However, in the sleep world, he seems to have hit a milestone. He has gone more than a week now without his middle of the night nursing session. Yippee!!


Truman had his annual therapy re-evaluation on Monday. We will get a full report later, but initially Beth said that he has sensory integration disorder / issues. Basically that means that he can't organize all the sensory inputs coming into his brain and thus has trouble paying attention to anything without getting overwhelmed or tries to engage multiple senses at once since he can't figure out how to process one at a time. She is recommending moving therapy to twice a week to work on this (and whatever else the final report shows) to make sure that the sensory issues don't interfere with learning. In the world of micro-preemies, I don't think I even know any who don't have sensory integration disorder. Particularly with micropreemies, when your brain is forced to interact with the world before it's ready, it tends to go a little haywire in the process (thus, the brain bleeds way back in week 1). Although we would love to get a clean report on Truman, we know that's not going to happen, and I am reminded over and over as to how many bullets we have dodged and how fortunate we are to have great resources available, the means (i.e. good insurance) to afford them, and a pediatrician who supports a proactive response. Fortunately, Truman's new insurance will cover unlimited therapy.

Truman had a check-up yesterday, and he has improved to 8 grams of weight gain a day -- slightly better, but not good. We spent some time discussing what could be done to help him grow more, and we concluded that we are really doing all we can and that Truman may continue to struggle for a long time -- or perhaps always -- with growth. It just seems that he has a max volume of food that he takes in, whether in liquid or solid form, and that we all we can do is pack it as full of calories as possible.

Dr. Suterwala was not surprised at all about the sensory integration disorder evaluation by the therapists and gave us a 2007 study out of the UK on 23-25 weekers who are now 6 and they are doing now that they have started school. It talked about some of the sensory-related issues along with other cognitive and motor issues. It's not the most encouraging of studies, but we want to be informed because now we are entering into uncharted areas beyond just whether milestones are being hit, but how they are being hit and behaviors, habits, delays that are not visible to or seem normal to the untrained eye. Because of the evaluation from Truman's therapists and our discussions, Dr. Suterwala has written orders for two occupational therapy sessions a week, one physical therapy session per week, and one speech therapy session a week.

And the first word is ...

"Dada."

We've heard "ga" and "da" and "de" for several days now. But yesterday, after hearing many, many intentional strings of "dada," we decided he has officially said his first word.

A visit to the Pumpkin Patch

Ben went out of town, so Truman and I took advantage of some special one-on-one time for a trip to the Dallas Arboretum for Fall Blooms. By the time we left, he was filthy and is certain to have eaten a few mouthfuls of grass, hay, and marigolds, but he was a trooper for a good two hours. And, today we discovered another sharp edge of tooth coming in on the top. I also think I see another two that about to break through the gums.
"I like pumpkins!"
"Orange is a great color. Did you see how it matches the writing on my Halloween onesie?"
"Ok, Mama. I'm getting bored with the same shot."
"Enough already!"
"Can I eat this? It's really pretty."

A few of my favorite things

CHRONOLOGICAL AGE: 14 MONTHS
ADJUSTED AGE: 10 MONTHS

My Favorite things:

10. Getting my two teeth brushed. (I like to help).

9. Trying to sneak up the stairs. (I got halfway up the other day before they caught me. I keep overhearing plans to block access, but there's an issue with the construction of our stairs and baby gates. I'm hoping they don't figure out how to solve it).

8. Banging things and banging on things, especially my parents' faces. (Daddy; my therapist, Beth; and I worked a lot on this one, and I'm starting to get better at playing with things rather just eating them).

7. Those cool flower-shaped Air Fresheners from Bath & Body Works (or at least they were until my parents took them out of the outlets).

6. The basket of magazines beside my mama's bathtub. (I like to rip the covers off and eat them).

5. Gerber Puffs and Organic crunching blocks. (I would live on them if they let me).

4. Seeing my mama right when she comes into my room when I'm hungry at night. (I really give her a big smile like I haven't seen her in a week).

3. Electrical Cords (particularly the big tangle under the computer desk).

2. Saying "Da." (Yes, I finally have a regular consonant sounds. Sometimes I say "ga" as well).**

And ...
1. Chasing my kitty, Flora (particularly when my mama shuts all three of us in the master bedroom hall where Flora can't hide).


** My hearing evaluation went OK. I failed in one ear, by my Daddy says that doctors think it was because I had a cold, and I like to squirm. We'll be scheduling the speech evaluation soon, but mama has a new job and new insurance, and that's slowing things down some.

My Least Favorite things:

1. Green Beans (You've seen the evidence).

2. Having to be still for diaper changes. (My parents actually use that cruel strap on the changing table).

3. The nose sucker when I'm sick. (I actually like it and think it tickles otherwise).

4. Having to sit still for my pre-bed book. (I would rather eat it and crawl away with it).

5. My car seat. (How would like having your whole body strapped down to something with the backseat of the car as your only view?)

6. Having to finish a bottle if I'm eating when my mama gets home from work. (Who wants to eat when you can play with someone you haven't seen in hours?)

7. Being quiet in church. (I haven't succeeded at this one yet. There's just too much to talk about in church, and everyone has paper).

That's it. I'm a pretty happy baby, so my list of un-favorites is shorter. I wanted to put a lot more on my list of favorites, but my mama made me pick just 10.

Love,
Truman

P.S. Mornings are another one of my favorites, but my Daddy wouldn't let me put in on the list. He's working on me to move that one to my least favorite list.

Never Turn Your Back ...

CHRONOLOGICAL AGE: 13.5 MONTHS
ADJUSTED AGE: 9.5 MONTHS

... or this might happen. I really didn't think his arms were long enough to reach a bowl on the edge of his high chair. Clearly, even if his arms aren't long enough, his will is strong enough. I call this The Great Green Bean Disaster of 2007. I guess he showed me once and for all how he feels about green beans and that I can't really make a quick run to the bathroom while he's strapped in. By the way, what you can't see are the green beans in the hair.

Mama and Daddy aren't the only ones who need to watch out. Flora has now become Truman's favorite toy, moving object, living thing -- you name it, if he sees her, he stops what he is doing, and if possible, takes off, abandoning parents, toys, food in pursuit of Flora. He tries to do the same with our other cat, Pickles, but Pickles is old and mean and does his best to avoid Truman. When Truman does get close, Pickles hisses, which can send Truman into fits of laughter. He thinks Pickles's bluster is quite funny. Truman has gotten a few grabs in on Pickles, nearly causing a heart attack for the cat.

And, of course, the stairs are the one of the big temptations of the house. I really think he could climb the whole flight if he didn't get daunted and more interested in the people spotting him below.

That closes this chapter of adventures in Trumanland.

Struggling to Grow

CHRONOLOGICAL AGE: 13 MONTHS
ADJUSTED AGE: 9 MONTHS
CURRENT WEIGHT: 14 LBS, 3.8 OUNCES

In the last month, Truman gained five ounces, which is very low. At this rate, he will be just shy of 18 pounds at the age of 2. There is this misperception out there that all preemies "catch up" to their peers in all ways by the age of 2. It is just simply not true in the case of micropreemies, a statement which I find myself saying to people all the time.

Our pediatrician told us that a recent study out of the UK shows that micropreemies tend to make it onto the growth chart at around 30 months. Mind you, that's not "catching up," that's just making it onto the playing field. This is a scary study considering that we've also been told all along that one of the biggest predictors of long-term developmental success in a preemie is early weight gain. I guess we can take comfort in the fact that Truman's head (and presumably the brain inside) is outpacing all the rest of his growth.

I know many preemie moms out there, and this seems to be one of their biggest struggles as well -- just trying everything to get these children to gain weight. All of the infant and childrens' nutrition books talk about starting early eating habits promoting vegetables and other healthy eating habits. Instead, we find ourselves shoveling butter, oil, carbs, starches -- anything that makes other children overweight -- into our kids. Hopefully, we aren't creating horrible dietary habits for them later in life.

It's not that Truman doesn't consume as many (or more) calories than other children when you consider the fortification to his breast milk and the butter and Neosure / Duocal added to his solid foods. It's just that he seems to need amazing amounts of calories just to maintain his weight. Hopefully he will appreciate this when he's 35.

Truman went to his first football game this month. It was important to Daddy, but it's not an outing we'll try again anytime soon. He lasted about a quarter.

Here's our little family out at the family farm during a trip to East Texas.



It's a rare moment when Truman is willing to snuggle, but he made a little time for his Papa Perry.

Truman and Daddy read his favorite book. Notice Truman is holding the pages open for himself.

In other Truman news, we learned that the white spots on his hands and feet that the pediatrician thought might be fat deposits are simply something called miliums, which is just clogged skin cells, perhaps due to old NICU needle prick sites getting clogged. They will go away on their own. In fact, one fell off this week.

Truman's latest milestones include pulling up all the time and climbing stairs. He can make it up two or three steps on his own. I'm not sure what I think about that -- time to put up the baby gate on the stairs. He is still not babbling yet, but he is making more and more noises everyday and seems to really be exploring what sounds he can make. He has a hearing evaluation next week, which is a preliminary step before his upcoming speech evaluation to address the speech delays. He has also started having separation anxiety with regard to both of us. It really makes it hard to leave for work in the mornings.

He has had a mild cold this week. It hasn't seemed to bother him other than a runny nose.

--Kara

Play weekend

CHRONOLOGICAL AGE: 12.75 MONTHS
ADJUSTED AGE: 8.75 MONTHS


We think it is finally safe to declare that Truman is a crawler. He's not very fast yet, and he still often straightens out his legs, but he gets better at it every day.

Truman had a weekend visit from his friend, Ethan, from Lubbock. They enjoyed playing together. Above, they are sharing a tupperware lid, and below, they are taking a break from checking out each other's pajamas.

Although Ethan is only 7.5 months, he weighs twice as much as Truman and is a few inches longer as well. More than the size, though, is the difference in how they look. Without the typical baby fat, Truman looks a lot older than Ethan, even though Ethan is less than a month younger than Truman's adjusted age.

Above, Truman catches a ride on Ethan as Ethan commando crawls around the living room. Below, Truman shows how has learned to self feed Gerber puffs. And yes, that is a Darth Vader plate and a placemat.


Truman really has taken an interest in Flora. Flora is a very sweet kitty and is very patient with him. We couldn't ask for a better cat for a baby.

Truman has a big noggin!

CHRONOLOGICAL AGE: 12.25 MONTHS
ADJUSTED AGE: 8.25 MONTHS
CURRENT WEIGHT: 13 LBS, 13.7 OUNCES
CURRENT LENGTH: 25.5 INCHES
HEAD: 17.33 INCHES

Truman had his one-year evaluation yesterday. All in all, he got a positive review. His weight is still lagging, and in fact is moving farther below the growth chart for his adjusted peers (He would need to be 17 pounds to make it onto the standard chart). However, his length is showing a steeper curve and getting closer to the chart. (He would need to be 26 inches long to make it onto the standard chart). His head, on the other hand, is actually almost on the chart. So, the bottom line -- Truman has a big noggin. Clearly, his pedi and nutritionist want him to do a better job gaining weight, but they weren't too concerned about the most recent stats because he is improving in length and doing so well on head growth, which is the most important growth statistic of all. Dr. Suterwala also talked about the weight issue in that with a 23-weeker, he really can't even be compared to his adjusted-age peers or even a 25-weeker for that matter. His only reliable measure of comparison is himself and whether he's growing, which he is.

That said, weight gain is still important and to be pushed as much as we can. So, the nutritionist raised the possibility of a product called Duocal, which is a fat and carbohydrate powder which can be added to liquid or solids to increase calories and fat. However, there were out Tiny Tots, so we'll think about it in a month at his next weight check. In the meantime, he was prescribed butter. In addition to the Neosure we put in all his solids foods (and bottles of expressed breast milk), we are to melt butter and mix it into his solids. His nutritionist joked that we should just give him a stick of butter to gnaw on, and I don't think she was entirely joking. She also suggested we encourage fattier and starchier solids like avocados, sweet potatoes, squash, and peas. We're really building some great food habits long-term -- teaching Truman to want carbs, butter, and fat.

Dr. Suterwala is very pleased with Truman's progress on gross motor skills and improvements in muscle tone and reduction in extension tone issues. He stated that he does not think Truman will have cerebral palsy issues with regard to muscle tone. He encouraged us to continue pushing Truman with therapy because he, too, believes that it is really making a difference. He agreed with the OT's recommendation to step up to two sessions of occupational therapy or physical therapy every week. We are currently working through the insurance issues with regard to that, so Truman should be adding more sessions within the next couple of weeks once all that is worked out.

Truman's speech development delays, on the other hand, do concern Dr. Suterwala, who thinks they could be related to his brain bleeds. He agreed that an evaluation by a speech therapist is called for. He also referred Truman to Callier Center for Communication Disorders for a hearing screening just to rule out the possibility that his speech delays could be related to hearing issues. That is scheduled for September 21. Remember, we had concerns in the past that Truman was late to turn towards sounds, but he passed his hearing screening upon NICU discharge and passed the informal hearing test Dr. Suterwala gave him a couple of months ago. So, there's not a concern that he can't hear at all, but there could be some deficit there, even though I really doubt it. Either way, it needs to be ruled out before beginning speech therapy.

At this point, Truman is quite vocal, but he does not babble. He basically just coos, and even then, he only uses two vowels for the most part. However, the dexterity he has achieved with the letter "e" is impressive. We've heard a total of four consonant sounds ever -- and none of those were in succession. An 8-month old should be babbling quite a bit, and many have said their first word. So, it is an issue, but hopefully, he'll surprise us soon like he did with gross motor skills or will respond well to speech therapy.

His occupational therapist also continued to express concern at today's session that he has some of oral fixation issues because of the excessive drool and because he rarely interacts with toys in any matter other than putting them in his mouth. For example, he does not bang toys together. If there are oral fixation issues, a speech therapist would also be the appropriate person to deal with that. In the meantime, we are trying to offer toys that can't be put in the mouth and trying to teach him to bang things, pet things, etc. By the way, that backfired with the cat last night when he tried to put her tail in his mouth and take a bit bite of her side. Flora was not pleased, but just politely ran away.

Dr. Suterwala disagreed about the diagnosis of the white bumps on Truman's hand and foot as sebaceous cysts. He thinks they could be deposits of fat, which could show he's not processing all the fat we are pouring into him. Or, they could be "swimmer's warts." Either way, we need to figure out what they are, so he gave us a referral to the dermatology clinic at Children Medical Center. However, when I tried to make the appointment today, I got the runaround that if I wanted to see a dermatologist for my child's pimples, I had to wait until December. Tiny Tots is now trying to help rectify the situation, but isn't making much progress either.

All in all, he was pronounced to be doing fabulously for a 23-weeker at one year of age.

In his Own Room

Truman has slept the last two nights in his own room. And, that only involved Mama sleeping in the full bed in his room for about two hours last night. He actually seems to sleep more soundly in the nursery. Maybe it's the firmer mattress than the Pack-and-Play in our room. Maybe it's the air vent that blows cool air very near his bed (he is very hot-natured kid). But whatever it is, I expected this transition to be a lot harder on all of us. Even though I was sad to go to sleep without him in our room, I was surprised at how well I slept relying on just the monitor to hear him. And, I was surprised that he has only waked up to eat, and he didn't even do that the first night.

This weekend, we let go of Truman underwater for the first time in swim lessons and he continued to swim towards us just fine. So, he's not just kicking underwater, he's actually swimming. He's also up to five seconds of holding his breath underwater. We wonder whether the big strides he has made in swim lessons over the last two weeks and the huge developmental strides he has made are more than just a coincidence.

In developmental news, Ben offered Truman a sweet potato puff (kind of like a dissolvable Cheerio) last night and although he used his whole hand to pick it up out of Ben's hand, he used his thumb and forefinger to take it out of his own palm and transfer hands. We also introduced Truman to the toy box concept this weekend, placing a little basket of toys on his blanket on the floor. He crawled/scooted over to it and began taking things out. He's also clearly developing a memory as he seems to remember how the mechanical toys work now and he remembers that removable vent every time he's in our bathroom floor now.

In eating news, Truman has now added butternut squash to his list of favorite foods. He ate four ounces in one setting. We are also moving up to the second foods, which are a little thicker and putting the puffs mentioned above in his mouth to get him used to more consistencies in his food.

One milestone that I'm particularly proud that wasn't mentioned in Truman's one-year post is that I have made it past a year on pumping / breastfeeding. I am now officially an extended breastfeeder. We're still going strong and have no plans of stopping either anytime soon. Breastfeeding is important for all babies, but it's super important for preemies, so I am going to keep it up as long as it makes sense for us. I hope that means two years adjusted, so 12 months down, 16 to go. Law school was hard, but I think I am almost as proud of pumping and breastfeeding this long as I was of graduating law school.

What a difference a year makes!

CHRONOLOGICAL AGE: 1 YEAR
ADJUSTED AGE: 8 MONTHS
WEIGHT: 13 LBS, 7.8 OUNCES

Truman turned one on Wednesday. I stayed home from work to spend the day with Truman and Ben. I had been feeling increasingly blue as we got closer to Truman's birthday because his birth is not exactly a memory I wanted to re-live. However, when the actual day arrived, it was easier than I expected. We took Truman to the aquarium, went swimming, and all three slept in together. All in all, it was a very nice day.

Part of what I had been feeling so blue about was Truman's lack of progress on milestones. We have several friends with babies around Truman's adjusted age or younger, and they all seemed to be passing him by. Although I expected that with regard to size, I wasn't really prepared for that with regard to milestones. Somehow, I was under the delusion that Truman would reach his milestones mostly on track for his adjusted age. He hasn't. But perhaps Truman sensed my worry and as you can see from some of the posts below, he has just had an explosion of development in the last two weeks. And this week, he adding pulling up to the milestones. He's still behind in some areas, particularly in speech, but we're working on it, and I feel a lot better about things since his developmental "spurt" this month. His OT still wants to consider adding another session each week and adding speech therapy to the mix as well to tackle oral fixation and manipulation issues, but all in all, things are really looking up developmentally lately.

It's amazing how far he has come in the past year. When he was born, he only had a 50% shot at survival and almost statistical certainty of serious problems. Now, a year later, even though he's been through a lot and still faces issues, it seems that "issues" are all that they are. Maybe the other shoe will drop some day, and there's still a chance of that as he grows and learns to read and other similar cognitive tasks that major challenges will arise as a result of his extreme prematurity and brain bleeds, but so far, he seems to have escaped many of the complications that plague many of his micropreemie peers. Even though I still struggle with feelings that it's "not fair" that my child had to suffer so much and struggle so much harder for each step than full-term babies, we have so much to be thankful for. In the last year, he has:

• Grown from 1 lb, 4 ounces to 13 lbs, 7.8 ounces.
• Grown from 11 5/8 inches to at least 24 inches (it's been a while since we measured).
• Recovered from one heart surgery and two bowel surgeries and has only scars as reminders.
• Gone from receiving IV nutrition because his bowel was blocked and couldn't process food to nursing well and taking up to 8 ounces at a time by bottle and eating stage I baby food with ease.
• Gone from being on a "no stimulation" order to being a very hands-on, high-touch baby.
• Gone from being silent due to intubation to expressing his moods verbally and making a number of happy coos and not-so-happy squeals. His favorite sound is "eee."
• Gone from still-fused eyes to beautiful, expressive blue ones.
• Recovered from a flat spot and an umbilical hernia with no medical intervention.
• Learned to sit unassisted and play at the same time.
• Learned to roll over.
• Learned to pull up.
• Learned to get up on all fours and rock.
• Learned to smile.
• Learned to laugh.
• Learned who his parents are and grown very attached to us.
• Learned to hold his breath under water.
• Learned to love bath time.
• Learned how to look at a book and the fact that pages turn.
• Learned to grab anything and everything and put them in his mouth.
• Sprouted two teeth.
• Developed a really, spunky, head-strong personality.
• Picked favorites among his toys and developed a love for paper.

I am sure there are more, but this is the list I came up with today.

This is where we started. This picture was taken in the first week or so of Truman's life.
This photo was taken during his birthday party on Saturday, August 4. My, what a difference. We invited family to help us celebrate his birthday and had a lovely party. As expected, Truman was mostly interested in the wrapping paper, but he tolerated the hat and the party and didn't have a meltdown. Because Truman isn't ready for the consistency of cake and is still too young on his adjusted age for the eggs in cake (and because we want to avoid sugar as long as possible), I soft froze baby yogurt into a cup cake paper and inserted a candle. It seemed to do the trick, but we had to feed it to him with a spoon since he is isn't eating with his hands yet.
Here's Truman assisting with the unwrapping of presents. The wrapping paper was one of the best parts about the party for him.
Truman shows off his sitting skills and demonstrates one of his favorites -- blocks. What the picture doesn't show is that Truman was reaching down and picking up new blocks as he dropped them and returning to the sitting position on his own. Here we are at the Dallas World Aquarium. His favorite parts were the orange birds, the leaves, and the turtles. He could take or leave the fish themselves.

Happy Birthday, Truman!

Slowdown on Weight

ACTUAL AGE: 1 DAY SHY OF 1 YEAR
ADJUSTED AGE: 8 MONTHS
WEIGHT: 13 LBS, 7.8 OUNCES

We took Truman to the doctor today to see about some little spots on his hands that had become infected. They diagnosed them as sebaceous cysts, which are basically plugged hair follicles. We've been instructed to clean them with alcohol and otherwise not worry about them.

What was worrisome was his weight at the appointment. His growth rate has slowed to a little less than 1/3 of an ounce a day. Some slowdown is to be expected for all babies as they become more active in the latter half of their first year and as they add less-calorie rich solids to their diet. Nonetheless, it was disappointing.

In good news, as of this morning, he is pulling up from a sitting position onto his knees.

Big Milestone Progress

CHRONOLOGICAL AGE: 2 DAYS SHY OF 1 YEAR
ADJUSTED AGE: 8 MONTHS


What a difference a year makes! In the last week, Truman has made huge strides developmentally. He has:

• Learned to sit. As of this weekend, he can sit for short periods all alone. He also seems to be getting the knack of adjusting his balance and shifting to avoid falling.
• Made big strides toward crawling. He is getting on all fours, rocking on all fours, and even falling forward. He has picked up an arm a few times, but hasn't figured out how to move it forward yet. He is pivoting in circles, scooting, and rolling to get to the places he wants to go.
• Learned to kick and splash in swim lessons. As of this past Saturday, he finally figured out that he should kick when he's under water and began splashing his arms as well. He also has progressed up to four seconds of holding his breath underwater.
• Taken a record bottle of 8 ounces. In other eating news, Truman has now tried: rice cereal, oatmeal, sweet potatoes, green peas, pears, avocado, and yogurt. Once we get through carrots and squash, we'll start on the stage II foods and try some of the mixed flavors.

In other just general fun, he has really started to notice the cats and tries to play with one of them. Fortunately, she is a very patient cat and lets him get a few tugs in before she runs away. And, this morning, Truman demonstrated the need to babyproof when in a matter of seconds, he pulled a vent off the wall and stuck his head inside.

An unfortunate developmental skill -- "That's mine." Here, Truman demonstrates his inability to share with his friend, 7-month-old Ethan.

Here, Truman shows off his underwater swimming skills.

Look ma, no hands! Truman sits for his grandparents.

Truman shows off his teeth in this photo.

In other developmental news, his OT last week commented that he needs to improve on visual tracking (apparently his is jerky rather than smooth) and needs a speech evaluation due to his excessive drooling. She thinks it may be a sign of some sort of oral manipulation deficiency. She says he also needs to work on his fine motor skills, specifically his pincer grasp with his thumb and forefinger. We'll discuss these things at his one-year evaluation next week.

--Kara

Thinking about crawling

ACTUAL AGE: ONE WEEK SHY OF 1 YEAR
ADJUSTED AGE: ONE WEEK SHY OF 8 MONTHS

He isn't crawling yet, but we think he may be there by his first birthday. He has made big strides in the last two days. He's figured out how to get on all fours and rock. He's also figured out to push with his feet, but he's unsure what to do with his arms. There have been a number of face plants, but he doesn't seem fazed.