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.