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.

Baptism & Trip to West Texas

Weight: 13.25 lbs (completely an estimate)
Actual Age: 11 months
Adjusted Age: 7 months

NEW MILESTONES: TEETH, SCOOTING, AND HIS FIRST CONSONANT SOUND

In the last month, Truman has enjoyed his first overnight visits to both grandparents and his first road trip. The 6-hour trip there was fine, but the trip back was another story. Let's just say that just about the time Mama and Daddy were going to give up and get a hotel room, Truman finally went to sleep. He's also had his first babysitting experience just this past weekend.

We enjoyed getting to show him off to all of his West Texas family and to our Church back in Lubbock for his baptism. He was a real trooper through all of the excitement and new people. I don't think he napped more than two hours in four days, so he was due for a meltdown on the ride home.

Here he is pulling Granmpa's hair with his Great Aunt Becky's help. Truman was a big hit in West Texas.

Here he is giving a big smile to his West Texas great-grandmothers. He's the first great-grandbaby for his Grammy, but one of many for his Great-Grandmom.

Here he is checking out the baptismal font with his grandpa following his baptism. Because Grandpa is a Presbyterian minister, he was able to perform the baptism in the same church where he performed our wedding.

We also let Truman have his first up-close interactions with other children while he was in Lubbock. He rolled right on top of the first baby girl we let him near and drooled on her head. I hope that isn't a sign of what's to come.

He continues to gain mobility through rolling and now scooting and inching around. You can put a toy a few feet from him, and he will ultimately get to it. He is also starting to pull his knees up some, but isn't making any true crawling motions. He also still isn't sitting on his own or making any real moves that directions. He does seem to be getting better at sitting while held, but I really think he will crawl before he sits. His OT is pleased about his scooting in circles. He continues to arch his back and try to move by that method. We try to stop it per the therapists' instructions, but he's one headstrong kid and has learned how to make this very bad developmental motion effective.

We had to hold off on solids for a couple of weeks after an allergic reaction -- we think to bananas. But we started again last week with oatmeal, which he didn't care for and showed by gagging over and over. This week we're trying English peas, which he hasn't made up his mind about yet. Next up is carrots.

He hit two other milestones in the oral department -- as of last week, he has two teeth on the bottom. (He had also gotten to where he only only got up once, if at all, over night. That has gone completely out the window with teething.) Also in the oral department, he said "ba" last week, which is the first consonant sound we've heard from him.

Just to round up the last few things, his hair is starting to thicken and he has learned to squeal in a very-highed voice whenever things are taken away from him or he gets put down when he doesn't want to be. This doesn't bode well for the toddler years, but if can't spoil your baby, who can you spoil?

--Kara

Medical Furlough

CURRENT WEIGHT: 12 LBS, 10.6 OUNCES
CURRENT LENGTH: 24 INCHES
ACTUAL AGE: 10.5 MONTHS
ADJUSTED AGE: 6.5 MONTHS

After his doctor's appointment last week, Truman was given the go-ahead to wait until after his first birthday to return. At that point, he will have all the one-year shots, blood work, etc., and a full developmental work up. The pediatrician did a quick developmental work-up at the last appointment and pronounced Truman anywhere from 5 months to 7 months in various developmental areas. He seems to be a little ahead on gross motor skills, but behind in speech and fine motor skills. The doctor is pleased with his cognitive development as well, which is the part we are clearly most concerned about.

He didn't use the term cerebral palsy, but I am kind of expecting that term to be applied after the more extensive one-year workup since the doctor and occupational therapists keep referring to the stiffness and extension in the limbs Truman has. I believe the phrase the pediatrician used was "issues" stemming from the brain hemorrhages Truman suffered in his first weeks. The good news is that everyone seems to think all such "issues" are correctable with therapy. So, it's not really a matter of whether he will achieve most milestones, it's when. Of course, learning challenges are still likely for most preemies, particularly those who suffered brain hemorrhages, but remain to be seen for many, many years.

An interesting note is that Truman's head seems to be outpacing the rest of his growth quite a bit. In fact, I think he may even be on the growth charts for his head. While this is most likely good news because it would mean that his brain is growing, it does raise a slight red flag with his history because it could mean that there's more blood buildup on his brain. At one point, it was suggested that Truman get an MRI shortly after his first birthday for long-term diagnostic purposes regarding the brain hemorrhages. Considering how well he is doing developmentally, I would be surprised if it's done because it's my understanding that it requires anesthesia. However, it will likely depend on the head growth and whether it concerns the medical personnel that it's too divergent from the rest of his body.

He is continuing to lag on his growth rate, but the pediatrician said that most babies slow down some in the second half of their first year, and he is 6.5 months adjusted, so we were told not to change things, but just to push as much Neosure into his breastmilk and solid foods as we can. Speaking of solids, Truman has now tried rice cereal, which he didn't seem to like; sweet potatoes, which were a big hit; and bananas, which were also a hit, but seem to be causing some allergic symptoms, so will be discontinued. Next on the list is carrots. After three weeks, he seems to be getting the hang of not pushing the food back out and opening his mouth for a bite. We still only give 1 TBSP or so a day and try to mix Neosure in with it. We've also given him a sippy cup to try with just an ounce or so of water. He's not sure what to think about that yet.

We are still working on sitting in physical therapy and have made little progress. The stiffness and extension I referenced earlier really seems to be getting in the way. However, his rolling has definitely taken off, and he's discovered he can use it to travel around the room. He's also scooting a little, but fortunately doing less of the scooting on the head behavior. The rolling has also really increased his tolerance for tummy time, which he now is doing on his own.

He's starting to reach out to show that he wants something and has learned to squeal in protest when something is taken away or when he doesn't want to do something, like sit. Swim lessons aren't going quite as well now that we are making him submerge. He knows when he gets perched on the side that he will be going under and gets scared, but he recovers after a short period of clinginess. I feel bad at times about it, but I know with a pool in the backyard that getting him able to hold his breath and not panic in the water is imperative. No matter what kind of safety fencing you get and precautions you take, you can never be too safe with a pool.

He has discovered his tongue and has lots of fun sticking it out and using it to lick the pages of his board books. It's quite hard to read a book to a child who is licking it, by the way. Paper is one of Truman's new favorite toys. We've learned that the pages of the Preston Hollow Presbyterian newsletter are perfect because they are slick enough not to get too soggy and too slick to tear into bits that he can actually eat. Truman had fun leaving his mark the envelope to his grandfather's birthday card this way, too.

Another wonderful development is that he now plays by himself for a few minutes when he wakes up. We leave a small stuffed cow and a flexible loop toy in the corners of his bed now. When he wakes in the morning, he often finds these toys or talks to his mobile for a while, which gives me an opportunity to lounge a little bit in waking and listening to him play. This morning, he played for a half hour before getting up to nurse. It was really nice and fun to peek over and watch.

--Kara

Eek! Mobility Begins!

CURRENT WEIGHT: 12 LBS, 2.8 OUNCES
CURRENT LENGTH: 23 3/4 INCHES

CHRONOLOGICAL AGE: 10 MONTHS
ADJUSTED AGE: 6 MONTHS

In the last few days, Truman has figured out how to move. Eek! Time to think about babyproofing. On May 31, he started rolling both directions. He had been rolling from tummy to back since about 2 weeks adjusted -- way in advance -- but had not yet rolled from back to tummy -- behind the curve. Now, he can go both ways and thus move a few feet across the room. We're not sure if he's aware that he can really get around that way.

However, he definitely has figured out another way to be mobile in the last week or so, and this is one that his occupational therapist says we must break him of. He has figured out how to arch is back and use his feet to push himself backwards on his head. So, he leans his head back and looks behind him and just starts scooting. Imagine a mobile backbend or the little girl going backwards down the stairs in the remastered Exorcist. It's quite odd. Although I'm impressed at his ingenuity, arching the back is a problem developmentally because it causes muscles to develop strengths in a way that will inhibit crawling. That, and he tends to get himself stuck in corners and will make himself bald soon. And, like most of us, if he can figure out how to move in some other way, why learn to do the hard way of crawling. We did sort of laugh when the therapist said we needed to stop him when he starts doing it. "How," we asked? "Haven't you met our headstrong--and preternaturally strong--child?"

In addition to rolling both directions, Truman has also started playing with his feet in recent days and even tried to get one in his mouth during occupational therapy yesterday. We thought he would never do that. If we can encourage that, hopefully, that will help build some the muscles he needs for crawling and counteract all the back arching. He still doesn't sit or really show any interest in it. He is, however, getting a little more willing to be held in a sitting position or spend time in the bumbo seat. That's our currently OT goal -- sitting.

Also, Truman has had a chuckle up to this point, rather than a full-blown laugh. In recent days, however, he's starting to show signs of a more true laugh. We are so excited!

Truman did pick up the pace some on growth over the past three weeks, but he's not back to his usual pace. The pediatrician suggested that if he continues to slow, he will advise that I stop nursing and exclusively pump so that we can add fortifier to more feedings. I might be willing to drop some of the evening pumps, but I am not willing to stop breastfeeding overnight and first thing in the morning. I think there are far too many psychological and bonding benefits that I am not willing to give up.

Truman's pedi and his nutritionist did convince us that it's time to at least recreationally start solids. I've been resistant because breast milk has more calories than any solids, and I don't want to cause a slowdown on his growth. However, we agreed to try 1 TBSP of rice cereal a day mixed with 30-cal formula/breastmilk. We're going to start on Saturday so that I will have plenty of time to be around and take pictures since his best time of day is in the morning. He also has his first water baby swim lesson on Saturday and is going to a picnic with several babies under 1 on Sunday. Quite a Tru-riffic weekend.

Truman had his first out-of-town trip last week. He didn't seem to mind the hotel or the pack-and-play, but the car trip was another story. Needless to say, we have some better trip planning to figure out before his trip to West Texas next month. He was so upset at one point in the car because he was hungry and tired (but refused to do either if we stopped) that the only thing we could do was sing "Row, Row Your Boat" over and over and over. For some reason, it works.

--Kara

New Photos!

CURRENT WEIGHT: 11 LBS, 6 OUNCES
CHRONOLOGICAL AGE: 9.5 MONTHS
ADJUSTED AGE: 5.5 MONTHS

Truman is over his cold and headed to his first baseball game tonight.

Truman's new favorite trick is standing. He pushes up and gets very excited about it! Of course, he can't balance on his own, but he really can support his own weight.

Truman loves interlocking loops. Here, he's grinning about getting a handful. And, of course, there's drool.

Truman doesn't like to sit down much, but when we can get him in our laps without him standing, we take the opportunity to read to him.

Truman wasn't a big fan of his first adventure in the swimming pool, but he was awfully stylish. He will start swim lessons next month in a heated pool, so we hope that goes better.

He finally found his toes (with a little help, of course).

Truman's First Post-NICU Illness

CURRENT WEIGHT: 11 LBS, 6 OUNCES
ADJUSTED AGE: 5.5 MONTHS
CHRONOLOGICAL AGE: 9.5 MONTHS

Three weeks out of isolation, and Truman got his first cold. It was mild one, and he is on the mend, but it definitely scared us when he woke up with a productive cough. Our first thought was his lungs, but the doctor assured us that it did not get down into his lungs. So, our first illness turned out to be pretty minor. I guess it was bound to happen sometime.

Of greater concern for me than the illness was the dramatic slowdown in growth. Instead of his usually 20 grams or so a day, Truman slowed down to a little less than 5 grams a day. Let's hope he picks it up over the next couple of weeks before his next appointment, or I think there will be some adjustment in his feeding regimen.

Out of Isolation

CURRENT WEIGHT: 11 LBS, 1.7 OUNCES (Last weighed: April 24)
CHRONOLOGICAL AGE: 9 MONTHS, 1 WEEK
ADJUSTED AGE: 5 MONTHS, 1 WEEK

Since being released from isolation at his April 24 doctor's appointment, Truman has been to the grocery store twice (not a great idea); to my office briefly; to our Sunday School class; the NICU reunion; and to his grandparents' house 80 miles away. His first road trip went well, and he got a chance to meet some cousins he has never met and see family who haven't seen him since his NICU days. Now that people are finally getting to meet him, I think people are surprised to see how healthy he looks. It's also funny to take him places and have people ask how old he is. We usually give the adjusted age, and we still get the "He's so tiny" comments. If they only knew .... And, of course, we make everyone "Purel" up to touch him, but it sure is hard to keep strangers from reaching out to touch.
His latest trick is that he likes to stand -- all the time. He pushes, not pulls, up, and is even able to support himself by holding onto his play gym, our fingers, or the couch. While it's an impressive skill at his size and adjusted age, Truman's OT wants us to discourage it because he doesn't show any desire to sit up. In fact, he doesn't like to bend his knees much. He can; he just won't. So, we are practicing sitting and pushing his knees up under him while he's on his belly--therapy exercises which he does not like at all. We are also trying to get him interested in his toes to encourage to sit, but as of yet, he doesn't appear to have realized they are attached to him. We are also increasing occupational therapy to every week because he's finally big enough and strong enough to make some real progress.
He's drooling all the time now and likes to put everything in his mouth, so teeth may be coming soon. That, or it's just an impressive social skill he's added to his repretoire. Exposure to new people has made it clear that he is very, very attached to his parents. He seems to need us within his sight to be happy with anyone else holding him other than his grandparents who has seen enough now to be familiar with.
Truman is also learning just what he needs to do to get picked up and how to fuss or squeal in just the right way to make Mama pick him up. This is different than the crying he did when was younger -- it seems he's figured out a way to pull Mama's strings. People may say we spoil him, but when are you going to baby your children if not when they are babies?
He had his first adventure in the pool this weekend. We even found a tiny cloth swim diaper for him and a floatie with a canopy to protect him super-fair skin from the sun. He wasn't a fan, but we'll keep trying every weekend until we get him more accustomed to it so that we can start swim lessons. With a pool in the backyard, I think you can't start too early on being comfortable and safe in the water.
The most glorious announcement of all is that we are the fourth night in a row of him sleeping about an 8-hour stretch. I feel more rested that I have since he was born. And, the colic appears to finally be ended. He has about 1 bad evening in four now rather than every evening, which is a very welcome relief.
--Kara

Early April Update

CURRENT WEIGHT: 9 LBS, 11.5 OUNCES (Last measured 2 weeks ago)
ADJUSTED AGE: 4 MONTHS
CHRONOLOGICAL AGE: 8 MONTHS

Truman smiling for his Mama

Practicing his baby stare

A little bit of tummy time

An afternoon at the arboretum - Truman's first ever outing

Observing the flowers with Granpa

As of this afternoon, Truman has spent more time at home than he did at the hospital. He spent 17 weeks to the day in NICU and has been for 17 weeks today.

Truman had another great pediatrician appointment last month. His most recent growth rate was 19 grams (2/3 of an ounce) a day. Since he's doing so well developmentally, is finished with RSV shots for the season, and is otherwise healthy, the doctor said he doesn't have to come back for a month. So, Truman's next medical appointment is with his occupational therapist on April 20. That means he'll have gone a full month without a medical appointment. He'll have a pediatrician appointment the week after that, and hopefully we will get the OK to come out of isolation. We have now officially retired all of the preemie clothes and (although they are a bit bulky on him) have moved to 0 to 3 month clothes.

He had his first non-medical outing about three weeks ago. We took him to the Dallas Arboretum while his Lubbock grandparents were visiting. Although it is a public place, it is completely outdoors, so we felt OK about the exposure. He lasted four hours before he decided it was time to go home. You can see a couple of shots from that above.

Developmentally, his latest trick is that rolls up onto his side a lot during play and while sleeping and rolled all the way onto his tummy while sleeping one night. He is also tolerating more tummy time and will now occasionally coo and reach and grab toys while on his tummy and is doing a better job of holding his head all the way up while on his tummy, as you can see above. He still is not a big fan of the exercise, but he is getting stronger and often now just rolls over when he gets tired of his tummy rather than crying about it and waiting for us to help him roll. We also think the tummy time is also strengthening his stomach muscles and helping to lessen his umbilical hernia. We've been told by his pediatrician that the hernia will simply heal itself over time as he develops muscle tone. His OT is also happy with his increased strength and better toleration of tummy time.

Truman is also cooing a lot more and and in a lot more situations and has learned to make some coo-like sounds other than crying to indicate displeasure as well as happiness. We have been practicing sitting up, and he is getting stronger every day. He has sort of a chuckle sound as well that we hope develops into a full-blown laugh soon. He loves to hold to a set of plastic links we have and puts them in his mouth, changes hand with them, and generally likes to play with them. He has also taken to holding onto burp cloths and fabric "lovey" toys and pulling them over his face and chewing on them.

Truman continues to have colic just about every night for an hour or two, and while we had hoped that the nightly screaming had peaked a couple of weeks ago (we even had to resort to driving him around in his car seat to get him to sleep at one point - as nothing else would calm him down), unfortunately it now seems that it plans to stick around for a while yet. Yet as hard as the screaming is on us, our hearts just ache for Truman because it's bound be be even harder for him.

I want to send a personal thank you to all of you who have donated at Truman's March of Dimes Walk America page. We are going to be walking on a team with his nurses and some other NICU families.

--Kara

Nine Pounds Plus!

ADJUSTED AGE: 3 MONTHS
CURRENT WEIGHT: 9 LBS, 2.2 OUNCES
CURRENT LENGTH: 21.1 INCHES

Truman has learned to grab the objects on his play mat. Here you can see he's got a grip on his favorite object, a blue monkey, and is cooing at it.

Truman has finally discovered that his hands are fun to play with, but he hasn't figured out that they are fun to watch just yet.

Truman has fun with all the silly faces his Grampa made for him on a recent visit. He can't wait until both his Lubbock grandparents come for a longer stay next week.

Truman has learned that he can make the objects on his playmat swing around and that they are quite fun to watch and talk to. He seems to add new noises to his repretoire every day, and his sounds have changed from grunts to vowel sounds.

We haven't heard any squeals or giggles yet, but he definitely wriggles when he gets excited and looks like he's on the verge of laughing.

WELL-BABY CHECK-UP

Truman had his six-month check-up today (even though he's three months adjusted and 7 months chronological age). The well-baby check-ups seem to be scheduled based on getting his shots close to the chronogical age.

DEVELOPMENT:

Dr. Suterwala is quite pleased with Truman developmentally. He even tried to see if Truman is starting to move toward sitting up. Truman did try to reach out and actually lasted a couple of seconds. We were shocked and had never even thought to see if he's getting close.

We had been concerned that Truman doesn't seem to turn to our voices when we talk, but Dr. Suterwala tested him with a bell and he followed the sound every direction, so he passed the test. Also, Truman has yet to make eye contact, but since he tracks objects well and studies our faces when we talk to him, Dr. Suterwala thinks it's just his personality. Truman also did a good job showing off his tummy skills for the pediatrician, including a nice roll over for him. It seems that Truman does best at tummy time for others, so we think maybe we need to get some sort of mat similar to the ones at the therapy clinic or the doctor's office.

GROWTH:

Truman picked back up the pace this week on growth and gained an average of 23 grams a day or about 2/3 of an ounce. It looks like the bump in calories in his bottles is doing the trick. We are very happy about that because Truman has "slept through the night" twice in the past week and has therefore skipped his first middle-of-the-night feeding. One night, he slept for six hours. Last night, although he woke up to play for a while and had trouble going back down, he went seven hours between meals.

Truman is in the 5th percentile in both height and weight on the Very Low Birth Weight Growth chart (for babies born below 3 lbs, 5 ounces). Since we keep away from all other children due to the RSV risk and don't see what other babies look like, we forget that even for a preemie, he is still very small. His head circumference, however, is in the 25% percentile, which is a great sign developmentally. Truman does not measure on the standard growth chart for his adjusted age.

Photos as Promised!

All of these shots were taken in early February. We've got more late February and early March photos still on the camera that we will upload soon.

Update: Twelve Weeks Adjusted

CURRENT WEIGHT: 8 LBS, 12.5 OUNCES
CURRENT LENGTH: 20.8 INCHES
ADJUSTED AGE: 12 WEEKS

FEEDING CLINIC SESSION:
On Friday, Truman met with a speech therapist to assess feeding issues. Up until the last couple of weeks, Truman had struggled with many of his bottle feedings, causing concern for his doctor and stress for us. The therapist felt like Truman had bad case of reflux and that he was at risk for failure to thrive. However, the more we thought about the assessment, the more we realized it wasn't really accurate for Truman. First, many of Truman's eating issues have improved in recent weeks as we have re-adjusted his nursing and bottle schedule to make sure he always nurses during his colicky evening hours. We also switched to a faster-flow nipple and have been able to have 90% of his bottles come from Ben rather than me. When he was initially referred more than a month ago to the therapist, none of these changes had been made. Also, despite our protests that Truman only likes to bottle feed while lying on his side (like breastfeeding), the therapist insisted on feeding him upright. Anyway, we did implement her recommendation to keep him upright for 15 to 20 minutes after each feeding and that seems to have cut down on the spit-ups a lot. We discussed the rest with Truman's pediatrician and nutritionist at his regular appointment today and decided that since he has improved so much over the last couple of weeks, we don't need to seek any help with his feeding at this point.

PEDI APPOINTMENT TODAY:

GROWTH AND DIET: Truman has slowed down his growth over the last three weeks back to half an ounce a day (a typical full-term baby would be gaining about an ounce a day at this age). Because of that and because he is getting close to cutting out a feeding by sleeping longer, the pediatrician, nutritionist, and we made the decision to increase the additive in his milk to bump it to 30 calories. As a result, we will have to keep an eye on him over the next week or so to see how his digestive system reacts.

FLAT SPOT: The doctor feels like the flat spot is just about gone. He suggested a gel pillow if Truman starts favoring one side again, but since he does not, no treatment or particular placement or exercises are called for at this point. At one point, Truman had a very pronounced flat spot on the right side of his head and would only turn that direction. The OTs caught it early, back in the hospital, and the NICU began being vigilant about making sure he slept on the opposite side and doing neck exercises. We have continued to make similar efforts. Everything seems to have done the trick.

IVH FOLLOW-UP: When Truman underwent an MRI just before discharge, it showed that there was still blood in his brain, but that damage had not occurred to the brain matter itself. It was suggested that he get a follow-up MRI at three months. Dr. Suterwala said today that he is so pleased with Truman's developmental progress that he doesn't want to do one. It would require sedating him in order to do the procedure and no developmental problems are indicated at this time. At one year of age, an MRI and complete developmental work-up will be as a prognostication tool.

DEVELOPMENTAL PROGRESS:

Truman has come so far since we last posted. He coos much more and has added the occasional higher-pitched sound to her repertoire. He still mostly coos while playing, particularly in response to toys dangling from anything -- a mobile, playmat, bouncy seat, etc. However, he now coos some at me even when not playing as well, particularly when I kiss him. In the last week or so, about 75% of the time, he has begun lighting up with a very big smile when I kiss him on the face or the palms of his hands.

Over the last several weeks, he has developed a very good aim when swinging at the objects on his playmat and hits them most of the time. In the last couple of days, he has started grabbing the objects, and today, he grabbed one and pulled it to his mouth. In just the last week or so, he has finally started sucking on his hands regularly, which means he is finally learning to soothe himself some. The last two mornings, I was awakened by the sound of his sucking on his hands to indicate hunger rather than cries. It was a welcome change.

Although he initially began rolling from his stomach to his back when he was two weeks adjusted, we had not seen him do it in a while and were concerned that he had forgotten how. However, last week at his feeding assessment, he was also evaluated by an occupational therapist and rolled over repeatedly for her. (Maybe he has learned that if he cries, we will rescue him from the dreaded tummy time, and he doesn't have to do the hard work of rescuing himself). Based on his history, she is going to start meeting with him once a month to monitor his progress and make sure he stays on track. In addition to rolling from his tummy to his back, he has begun rolling onto his side and even made it all the way over from his back to his tummy once, although it was clearly unintentional. We've been scolded again to make sure he gets more tummy time despite his protests.

In general, he is tolerating and starting to request more frequent and longer play sessions on the floor or in his cradle. It's so fun to participate and watch. Based on his reaction to other family members, medical personnel, and the occasional visitor, it also seems that in the last couple of weeks that he has become more attached to the two of us and more aware of us as a special role apart from others. It finally seems that we have unique powers to soothe him, which feels so nice.

--Kara

Changing of the Parental Guard

ADJUSTED AGE: 11 WEEKS

As of today, I return to work, and Ben becomes a stay-at-home dad. Ben finished work a week ago, so we've spent the last week at home together transitioning from a somewhat day-time nursing schedule to an evening and early morning nursing schedule and adjusting my pumping schedule to accommodate the change. I will work about half days for the next two weeks before returning full time at the beginning of March.

Although I've confirmed over the past 11 weeks that I would not be very good at being a stay-at-home mom indefinitely, it's still sad for our special one-on-one Mom and Truman time to be coming to an end.

Truman has become a much easier baby over the last couple of weeks or so, primarily he has gotten easier to get to sleep and has started wanting several short periods of playtime on his play mat or in his cradle every day, giving Mom and Dad's arms a much-needed break. He has also really picked up the pace in "talking" and smiling while playing. He has learned how to actually hit the toys he swings at on his play mat, and we have discovered that he is ticklish.

Truman has started eating greater volumes (3+ ounces at a time) and is therefore taking longer breaks between meals. He still, however, screams at many of his bottles and still struggles with bottle feeding. We have our assessment at the feeding clinic on Friday to try to work on that before he loses his sucking reflex and greater problems begin.

--Kara

Six Months & Eight Pounds

CURRENT WEIGHT: 8.0 LBS
ADJUSETED AGE: 2 MONTHS

Truman is six months old today and weighs 8 lbs. He picked up his growth rate over the last two weeks from about 2/3 of an ounce a day to 5/6 of an ounce per day. His most recent blood tests are looking a lot better as well, so we have been instructed to discontinue adding Human Milk Fortifier to Truman's bottles and to add only the Neosure powder instead. That's very good news as he seems to really dislike the taste of the HMF. The pediatrician seems very pleased with Truman's progress and has set the next appointment for three weeks this time -- the longest time ever without seeing the pediatrician.

Developmentally, Truman continues to "talk" more and more to us and to his playmat and mobile. He is also beginning to smile at the toys on the playmat as well. Yesterday, he mimicked me sticking out my tongue at him for a few minutes. He just seems to keep discovering more of his world everyday.

It's hard to believe that it's been six months since that very scary morning when Truman entered our lives and changed them dramatically forever. It's not exactly how we envisioned our lives as parents to begin, and we definitely had no expectations that terrible morning that we would be where we are today -- with a healthy, beautiful, baby boy in our home. He may still be quite small, but he's spectacular. Despite everything our little boy went through in his four months in the hospital, we definitely have a lot to be thankful for.

--Kara

Early Childhood Assessment

ADJUSTED AGE: 8 WEEKS

Truman had his first developmental assessment by Early Childhood Intervention on Monday and was pronounced as being on track for his adjusted age. It was determined that he was right on track regarding motor skills and that his verbal and social skills were evolving toward where they needed to be. At this time, he will not be receiving any therapies from ECI to help catch him up. Because his pediatrician and therapists through Baylor are working on his feeding and nutrition issues, those were not assessed. His ECI case worker will continue to check in on him every month to make sure he remains on track.

We felt going into the assessment that Truman is just about where he needs to be for a two-month-old baby. However, we wanted confirmation of that and to make sure that he continues to be tracked due to the intraventricular hemorrhages he suffered in his early weeks. Although no brain damage appears to have ocurred at this point, the blood is still there and could cause damage in the future. He is still at elevated risks for such complications as cerebral palsy, so it's important that developmental specialists keep an eye on him.

Truman had a follow-up opthamologist appointment yesterday as well. The retinas of his eyes have moved into zone III (the final zone of development) and appear to be progressing. The ridge remains on his left eye, but it has moved out, allowing the vessels to move into zone III. So, another good report.

Developmentally, we heard what sounded like Truman's first official "coo" on Monday morning. It was a very cute squeal. I also noticed yesterday that in addition to tracking, he has started to move his gaze between objects. There is a stationary mobile on his changing table, and he was looking from one bear to another and back again.

Again, we have so much to be thankful for that considering the horrible start our little had in life, things are really going quite well for him.

--Kara