Teeny Tiny Truman

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

2010-03-25T20:40:00.003-05:00

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

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

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

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

Access to New Blog

2007-12-17T15:30:00.001-06:00

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

2007-12-17T11:05:00.001-06:00

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

2007-12-17T09:39:00.000-06:00

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

2007-12-05T09:14:00.000-06:00

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

2007-11-20T16:14:00.000-06:00

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!

2007-11-16T11:51:00.001-06:00

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

2007-11-08T13:54:00.001-06:00

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

2007-10-24T10:24:00.001-05:00

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 ...

2007-10-15T14:50:00.000-05:00

"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

2007-10-13T21:54:00.001-05:00

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

2007-10-12T09:11:00.000-05:00

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 ...

2007-09-25T19:37:00.000-05:00

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

2007-09-14T09:04:00.001-05:00

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

2007-08-29T20:09:00.000-05:00

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!

2007-08-16T09:29:00.000-05:00

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

2007-08-13T11:18:00.000-05:00

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!

2007-08-09T21:04:00.000-05:00

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

2007-08-07T16:58:00.000-05:00

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

2007-08-06T08:23:00.000-05:00

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

2007-08-01T11:13:00.000-05:00

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

2007-07-18T10:09:00.000-05:00

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

2007-06-28T11:54:00.000-05:00

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!

2007-06-08T10:40:00.000-05:00

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!

2007-05-25T17:26:00.000-05:00

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

2007-05-20T17:08:00.001-05:00

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

2007-05-14T22:53:00.000-05:00

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

2007-04-03T14:48:00.000-05:00

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!

2007-03-07T17:29:00.000-06:00

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!

2007-03-07T13:23:00.000-06:00

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

2007-02-28T22:59:00.000-06:00

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

2007-02-19T09:11:00.000-06:00

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

2007-02-08T18:43:00.000-06:00

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

2007-01-31T21:23:00.000-06:00

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

Smiling

2007-01-27T12:21:00.000-06:00

CURRENT WEIGHT: 7 LBS, 5.1 OUNCES
ADJUSTED AGE: 7.5 WEEKS

Truman had his first very clear smile at me yesterday. It was great! He smiles a lot out of contentment, but this was the first clearly directed at someone. We can't wait for more.

--Kara

Update: January 25, 2007

2007-01-25T14:42:00.000-06:00

CURRENT WEIGHT: 7 LBS, 5.1 OUNCES
ADJUSTED AGE: 7.5 WEEKS

Truman had another pediatrician appointment yesterday. The pediatrician is happy overall with his health and developmental progress, but is concerned about the fact that we have seem to have increasing eating issues. That prompted the doctor to refer us to a feeding clinic for weekly sessions.

In recent weeks, Truman has returned to his earlier ways of screaming through bottle feedings and trying to refuse bottles altogether. And, he has become a lazy breastfeeder. Although he is always eager to breastfeed, he seems only to get satisfied overnight and early in the day when the supply is greater and nursing is easier. So, trying to keep him happy and full has become quite a struggle. I was so glad to hear that there may be special help to ease these issues, particularly considering that I am returning to work full time in about five weeks because we won't be able to cut bad bottle sessions short and offer breastfeeding as an alternative while I am at work.

Developmentally, Truman hit another milestone this week. He began tracking moving objects with his eyes and head. We noticed it on Sunday. He was very obviously following Ben's hands with his eyes and whole head. I've noticed in the last couple of days that when I put him down in his bouncy seat, he watches me walk away from him.

--Kara

Getting longer!

2007-01-12T16:56:00.000-06:00

CURRENT WEIGHT: 6LBS, 9.6 OUNCES
CURRENT LENTH: 19.25 INCHES
ADJUSTED AGE: 5.5 WEEKS

Truman had another good doctor visit on Wednesday. They did a full check-up with more assessments than usual. His pediatrician was happy with his muscle tone and overall physical health. He's still very small, but growing at an average of 2/3 of an ounce a day. He is really starting to look bigger and is outgrowing his clothes. He is still in preemie clothes, but he's wearing the larger brands now. His ECI case worker came to visit last week, and I think we are really going to like her. His developmental assessment with the occupational therapist will be next week.

His nasty diaper rash is almost completely gone. I think the greatest factor has been a maturing GI tract. Instead of having small stools 20-30 times per day, he is now having about two large ones each day instead.

Truman is getting better about sleeping at night -- at least the first part of the night. He still wakes every two to three hours to eat, but will go back down after eating, that is until about 4:30 or 5 a.m. He is currently shaping up to be a super early riser! For any of you who know his dad, yikes! The only thing that will get him back to sleep after that is cuddling with Mom.

He appears to have made it through his first minor illness at home with flying colors. Yesterday, he was acting lethargic and clearly having more gas pain than usual, as it was causing him to squeal in pain. He also had a little diarrhea and was spitting up what little he was eating. A phone call to the nurse practitioner diagnosed it most likely as a GI bug of some kind. We pumped him full of Pedialyte and he was fine by this morning. We are still holding off on the fortified milk for another day or so and giving him straight breast milk, which he is handling just fine today.

We are still doing okay with the isolation. Truman has had a couple of healthy visitors and we get out about once a week for a doctor's appointment of some kind. We also try to go out in the stroller or into the yard some on nice days. And, I try to run errands on the weekends to get out some when Ben is home. The hardest part has been the logistics of it all. For example, there are no drive-through pharmacies in Dallas that will compound the liquid Prilosec that Truman needs, so I had to find the one in town that compounds and is open after hours so that one of us can go and stand in line while the other parent can be home with Truman. And, even the weekend errands have to be well-coordinated to make sure they all get done because making it out on a weeknight is virtually impossible by the time Ben gets home from work and we've had dinner and such. Also, errands have to fit in around pumping. And pumping while caring for a very demanding baby (he doesn't like to ever be put down) is a whole other story for its own day. Even with the hard work and early mornings, we wouldn't trade him for a million other babies.

--Kara

Update: January 3, 2007

2007-01-03T16:07:00.000-06:00

ADJUSTED AGE: 4 WEEKS, 1 DAY

Truman's diaper rash finally appears to be getting better. Perhaps the paste we mixed of Calmoseptine (calomine and zinc oxide) and stoma adhesive powder created enough of a waterproof barrier to do the trick or it could be the blowdrying of his little bum after all diaper cleanings. Blowdryers aren't usually a changing table accessory, but it seems to work, and he seems to really like it.

He had another appointment with the pediatric opthamologist on Monday. He eyes still appear to be progressing even though the Retinopathy of Prematurity (ROP) is still present at this point. There is a ridge on his left eye where the vessels will have trouble growing past, but the opthamologist thinks that his vessels will ultimately grow past the ridge and that he will likely have normal vision. ROP is something almost all preemies, particularly micropreemies, suffer from because the retina does not develop until later in gestation. Basically, the blood vessels of the eye grow out from the center and must reach the edges of the eye to ensure full peripheral vision. It just takes longer for a preemie because the vessels do not grow well exposed to light, oxygen, and other external factors. Truman goes back in a month for another exam.

On the feeding front, it turns out that the special formula that was prescribed is available only to hospitals as of this past October. Even the pediatric clinic can't order it other than as samples. So, Truman's nutritionist team (he has three nutritionists) has recommended adding Human Milk Fortifier to his breast milk bottles. So, it turns out that he will be exclusively on breastmilk after all. We are just going a different route to beef it up to make sure it has all the ingredients he needs.

In addition to rolling over, Truman has started actually hitting some of the things he swings at on his playmat. His case worker from Early Childhood Intervention is making her first visit on Friday. Once that evaluation process begins, we will have a better idea of where Truman is developmentally and where he will need additional help.

--Kara

Update: December 28, 2006

2006-12-28T17:14:00.000-06:00

CURRENT WEIGHT: 5LBS, 15.2 OUNCES
CURRENT LENGTH: 18 INCHES

Truman had another pediatric appointment today. He continues to gain weight, not quite as fast as last week, but the 20 grams a day he put on this last week was still good.

However, Truman has a diaper rash (presumably caused by the high-calorie breast milk) that has gone from bad to worse to horrible. During his last appointment, a cream was prescribed. That made it worse and it even started bleeding, so we discontinued that a few days back. We had tried leaving Truman open to the air, but that did not go well for him as he really likes his boundaries and managed to stick his arms through his cradle, turn completely sideways, and many other contortions and screams while uncovered. So this week, we were sent home with a tank of oxygen and canula tubes and instructed to put a diaper on him loosely and run the tube into the diaper for an hour three times per day. The doctor joked that the oxygen is for the wrong end of what you would expect for a preemie. They also came up with a concoction of a type of over-the-counter cream mixed with stoma adhesive powder that we are to mix and apply to his bum as well.

It also turns out that Truman's labs from last week show that he is deficient in calcium, vitamin D, and phosphorus, none of which bodes well for bone growth. So, we are being prescribed a special formula for Truman to take. We will have to mix it 50/50 with expressed breast milk for his bottles. So my goal of my little one being an exclusively breast-fed baby for at least a year will not be met, but we will do what we need to for him. They are recommending that we continue with the nursing sessions. (I currently nurse Truman for half of his feedings and bottle feed the remaining four). I've also been instructed to drink more milk, which for any of you who no me personally is like prescribing me to drink battery acid. Ah, the sacrifices we make for our children.

--Kara

Christmas at Home!

2006-12-26T10:06:00.000-06:00

CURRENT WEIGHT: 5 LBS, 9.6 OUNCES (LAST CHECKED ON 12-20)
ADJUSTED AGE: 21 DAYS

For a kid who can't play with much yet, Truman was quite the popular gift recipient this Christmas. I guess he was a very good boy this year.

Truman did beautifully with weight gain his second week home -- gaining almost an ounce a day. His pediatrician said just to keep on with what we were doing. We don't know whether it was the Prilosec for reflux or the doctor's advice not to stress over minimum volumes or how many bottles and just to give him what he would take, but something worked.

Truman finally appears to be learning to sleep at night. Some nights are still struggles, and he is sometimes hard to get back down after a feeding, but we are definitely making progress. It looks like the trick may be to keep him up and very entertained during the early evening hours to wear him out for a long night.

He's also advancing developmentally. He has learned to roll over from his tummy to his back and tries to do so almost every time he is placed on his tummy. Sometimes it takes a lot of rocking before he can make it, but with enough effort he can usually make it over. He also is really enjoying looking at things on his play mat and is clearly swiping (and sometimes hitting) the toys dangling above him on the mat. As best we can tell from the baby books, he is on track for his adjusted age. There are a few things he doesn't do that typical newborns would and some things that he can do that typical newborns can't do yet.

Truman gets some supervised tummy time on his play mat for the first time.

Truman meets Flora.

Gramma helps give Truman a bath.

Truman gets a little exercise.

Merry Christmas from Truman to you all!

Merry Christmas Everyone,
--Kara & Ben

Settling In

2006-12-14T18:58:00.000-06:00

CURRENT WEIGHT: 5LBS, 3 OUNCES
CURRENT LENGTH: 18 INCHES
ADJUSTED AGE: 11 DAYS

The three of us are settling in at home and loving it despite the sleep deprivation.

Truman has his days and nights mixed up and doesn't like to sleep at night unless he's being held, so that is proving very draining for us, but we are finally starting to achieve some cradle time at night in the last couple of days. Ben takes the first shift until about 2 or 3 a.m. with Truman and then I take the rest of the night and sleep in 30 minute spurts. It's exhausting!

Feeding Truman is still a struggle. He has not gained as much weight as his pediatrician would like (we are going to a special clinic for low birth weight babies), so we are tinkering with ways to make him grow. The primary issue is that Truman greatly prefers breastfeeding and often screams at or fights the bottle, which means it can take too long to feed him and that (as well as the fighting the bottle) wastes energy. So, the latest solution is that we give him three or four bottles a day of expressed breast milk mixed with Neosure preemie formula to make it higher calorie and give as much as he will take in half an hour without fighting. For all other feedings, I breastfeed hind milk, which means that I have to pump for 5 to 10 minutes before breastfeeding him. In the middle of the night, it is no fun to pump while trying to hold a crying baby at the same time, but you do what you have to do. The pediatrician also prescribed an anti-reflux medication to see if that would help.

He is spending several hours awake each day and having longer periods of alertness. In the last couple of days, he has taken to entertaining himself with his mobile or crib mirror for a while in the late afternoon. He seems to enjoy some time free of blankets and arms to kick and swing his arms about. He is also getting good at lifting his head and turning it and holding his head up for a few seconds on his tummy. He's also starting to sway his arms toward objects, so we think he'll start grabbing things soon. He is also getting good at rolling from his back to his side (usually to escape a diaper change). He loves to be held and talked to for very long periods.

--Kara

Home for the Holidays

2006-12-06T18:41:00.000-06:00

Well, we made it.

Early yesterday afternoon, Truman Borden was finally discharged from the Baylor University Medical Center Neonatal Intensive Care Unit into the care of his parents. Amazingly, he came home on the due date originally predicted by Kara's ObGyn: December 5th. At the time of Truman's discharge, Truman was 3 months, 27 days (120 days) old. His adjusted age (the age his is developmentally, measured from his date of conception) was one day. His weight was 4 lbs, 13.8 oz.

The day of discharge was one of great excitement and anticipation, and one of a little nostalgia. Don't get me wrong, we certainly didn't want to be at the hospital any longer than absolutely necessary, but we had taken a great deal of solace and comfort in knowing that Truman was under the care of an amazing and caring medical staff 24 hours a day, seven days a week. We were also essentially bringing an end to a number of relationships that we had built at the hospital over the last four months, including his primary nurses, who for all practical purposes had acted as foster parents on Truman's behalf. To them we owe our unending gratitude and thanks, because without their help, we would not be taking our baby home.

We officially received Truman's approval for discharge around 11:45am, but we had to wait another hour or so before heading out because we were waiting on Truman to get his RSV shot. We finally started rolling Truman down to Discharge and Pick-up at about 12:45. By 1:00pm we were in the car and ready to head home as a family for the first time.

It was very exciting to walk Truman in through the front door and give him a quick tour of his home, but we couldn't dally around too long because he was due for a meal by 2:00pm.

As the day went along, we were introduced to that state of exhaustion that all new parents come to learn, but it was very nice to be a part of something that is normal for a change.

Truman's walk through life will now, at last, begin in earnest. With work, luck, love, and patience, hopefully it will be a long and successful one.

Thank you everyone for your interest and support through this chapter in our lives. This blog has been somewhat theraputic as well as a great way to keep everyone informed without having the telephone ringing off the wall. It has also been nice to come home nightly and be able to read all of the comments posted by family, friends, college buddies, colleagues, and even those of you whom we have never even known in person. Your kind words and prayers have meant a great deal to us over the last several months.

This blog will not be ended just yet. There are too many friends and family who are interested in how Truman progresses. But from here forward, the updates will be coming along a little less often. One reason for this is that Truman's quest to grow and graduate from the NICU has now ended. The other reason is that now, as parents of a newborn and as working professionals, time is a little scarce. I'm sure that many of you can relate.

Thank you, everyone. And Happy Holidays!

--Ben & Kara

Rooming In Today!

2006-12-04T19:46:00.000-06:00

Just a quick note to everyone: As of 3 pm today, Truman is completely disconnected from all tubes, wires, monitors, etc. We're staying in the hospital tonight and we have Truman in our room and in our hands. It's just wonderful!

While there is a small chance that we may have to room in an additional day, it appears far more likely that Truman will be discharged from the NICU tomorrow afternoon and will come home for the very first time.

More details to come later, but for now I have to get back to the hospital. There are more important things than blogging to do at the moment!

Rooming in. No wires, tubes, or monitors. Just Truman and us.

Yes, the room is something of a mess, but that's because we're packing it up! We're expecting news of our discharge approval at any time.

Truman enjoys what is going to be his fianl nap at Baylor University Medical Center.

--Ben

Update: Sunday, Dec. 3

2006-12-03T17:25:00.000-06:00

CURRENT WEIGHT: 4 LBS, 14.4 OUNCES

Even though Truman is eating marvelously (and large amounts), he lost weight on Friday and held to that weight yesterday. The hospital is still indicating that he is likely to go home on Tuesday, but he really needs to gain at tonight's weight check and again tomorrow to hold on to a due date departure. They have upped the fortifiers on his breastmilk to bring it to 26 calories to help this process along.

He is doing great. Now that he eats how much he wants when he wants, he appears to be evening out to a four-hour schedule and taking about 2.3 ounces at a time, give or take a little.

We also got results back from his MRI. The blood is still in his brain, although resolved to some degree. However, we were very pleased to hear that at this point, no damage has been done to the white or gray matter of his brain, so it is about the best result we could hope for. He'll have another MRI in three months.

A couple of matters that could push him later into the week are an eye exam and a Synagis (RSV) shot scheduled for tomorrow. Sometimes the eye exams in particular really wear the babies out. However, for now, we are scheduled to room in with him at the hospital tomorrow.

--Kara

Five Pounds (For Real)

2006-12-01T10:56:00.000-06:00

CURRENT WEIGHT: 5 LBS, 0.08 OUNCES

Truman gained 25 grams yesterday, which makes him 5 lbs for real, rather than just holding onto swelling from surgery. That also means he is done dropping water weight after surgery and on back on the path of real weight gain!

--Kara

Discharge Prediction!!!

2006-11-30T13:48:00.000-06:00

CURRENT WEIGHT: 4 LBS, 15.2 OUNCES

As of this morning, Truman is set to come home on Tuesday or Wednesday!!!!! All he has to do now is eat all by himself for 48 hours and gain weight over the same course of time. He probably still has a little bit of extra fluid from surgery to lose (he was 4lbs, 9.8 ounces the day before surgery) and then we just need him to gain weight, no particular amount, just two days in a row of gain. We will be rooming in with him on Monday or Tuesday night. Tuesday would have been his due date. He will be 17 weeks old chronologically with an adjusted age of newborn or 1 day.

He is still doing well off of his canula and continuing to eat well all by bottle or breast and is taking between 1.2 and 1.3 ounces per each bottle feed. Although NICU has his on a 3-hour feeding schedule, he would prefer a 2.5-hour schedule, so between nursing and pumping to keep up supply (my body thinks I have a four-month old with a much bigger appetite), that's going to be very grueling, but we are looking forward to it. He still gags a little with the bottle unless we have a very-slow flow nipple, so we'll be experimenting to find some commercially available options that he likes.

This morning was the first time I have seen him without anything on his face -- no feeding tube, no canula, no sticky tabs for breathing equipment -- just his sweet face. It is beautiful!

He passed his car seat test and hearing screen this morning. All babies who have had any type of breathing support have to spend an hour strapped into their car seats without desatting before they can go home in them. He also had an MRI so that we can have a better baseline and understanding of what is going on with his brain bleed and potential future development issues related to that as we go forward. All that's left is an RSV shot and our CPR and discharge classes. He's moving back to South Hall (feeder grower) from Level III this afternoon.

Truman with tousled hair and a smile. Makes you wonder if he knows that the doctors will be giving him an expected discharge date the next morning...

Truman is already hamming it up for the camera. Will we have a joker on our hands as he grows up?

Truman may look peaceful now, but you should see him 30 minutes after this photograph was taken, when he decided that he was hungry again (only about 90 minutes after he finished his previous meal).

Soon, this family will be living at home instead of the hospital!

--Kara & Ben

Day 114

2006-11-29T11:35:00.000-06:00

CURRENT WEIGHT: 5 LBS, 3.4 OUNCES

Truman's canula is being turned off today, so he's going to have another run breathing all by himself.

Truman has surprised everyone, including the medical staff, on how well he is eating. Since he started eating again, he has taken every feed by bottle or breast with the exception of one (and that was because of craziness at the time in NICU rather than refusal/inability to eat). It has been discovered that he bottle feeds best while lying on his side, probably because it's more like breastfeeding, which he is a champ at.

His IV came out overnight, and they did not replace it, so he is off of his post-op TPN completely. He continues to be voraciously hungry. As a result, his feedings are now "ad lib" with a minimum of 35 CCs each time, and the milk has been fortified to have more calories. That means he has to take 35 CCs (or 1.2 ounces) by bottle or the rest will be gavaged, but he is allowed to eat as much as he wants beyond 35 CCs. When he breastfeeds, he is not supplemented. Although NICU has a "30-minute rule" on eating because it's believe that taking longer than that to eat by bottle or breast costs more calories than it gains, if Truman continues to scream with hunger after half an hour of breastfeeding, I let him continue. I talked with his practitioner and the thought is that he's wasting just as many calories screaming as he is with prolonged nursing.

He also has finally started losing some of the extra fluid he retained following surgery. He lost four ounces yesterday. Hopefully, he will drop the rest of the extra fluid in the next day or two so that we can know what his "real" weight is to monitor gain.

We talked with the practitioner last night about what he needs to accomplish to come home. One step was getting off the canula, so we are hoping he succeeds this time off of it. The other is that he needs to be able to take all of his feeds by bottle or breast and gain weight consistently for several days.

--Kara

Day 113

2006-11-28T11:48:00.000-06:00

CURRENT WEIGHT: 5 LBS, 7.4 OUNCES

Truman continues to recover from surgery and to get stronger. He made it successfully through four breastfeeding sessions yesterday, so when his overnight feedings came around and he only got 1/3 of an ounce (10CCs), he was not a happy boy. His caretakers were listening (how could they not listen to those pipes) and increased his gavage feedings to 20CCs today. Mom is also going to try to fit in three breastfeeding sessions today, which will definitely please the little one.

His canula was weaned from .5 liters of flow to .2. His lipids will be turned off today (they are part of the IV nutrition), and his IV fluids have been reduced. He also got his last dose of preventive antibiotics this morning. He lost 10 grams yesterday, which although it is isn't much, at least he's not continuing to pack on more swelling.

Although one side of his tummy wound looks pretty red and although he continues to be very swollen, he is showing no signs of pain and wants to be held in his favorite position again -- with his tummy on our chests. He appears not to have lost any strength as a result of surgery. During several burping sessions, rather than laying his head on my shoulder, he held his head up and watched me, rooting for more food the whole time. He is definitely acting like our Truman again.

--Kara

Finally Extubated and Eating

2006-11-27T11:26:00.000-06:00

CURRENT WEIGHT: 5 LBS, 7.7 OUNCES (2500 GRAMS)
CURRENT LENGTH: ALMOST 17 INCHES

After five post-op days on the ventilator, Truman was finally extubated. Although he was "a little puny" (meaning that he didn't want to work at doing his own breathing) at first, he was put on a high-flow canula and now seems to be doing well. This was a frustrating time because we'd been told to expect him off of the ventilator after 2 or 3 days. The reason he stayed on longer was because of his pain medication; so long as he was receiving it he couldn't be taken off of the ventilator because of the risk that he would not breathe on his own.

Despite having not eaten anything since the morning of Tuesday, November 21st, Truman has gained 14 ounces of weight. Virtually all of this new weight is fluid retention resulting from his surgery and pain medication, which means that Truman is swelled up like a little balloon right now. He has been urinating well, but he hasn't been able to pass everything he needs to yet. Hopefully Truman will lose most of this extra fluid over the next few days and we'll be able to start getting real measures of his weight gain again.

The surgical wound itself is healing very well. It's not pretty to look at, but we're confident that in a couple of years it will be barely noticeable, especially if he heals up like he did after his heart surgery many weeks ago. That scar is now so well healed that it can be hard to see it even when looking for it.

We were also able to begin holding him again, which was much needed for Mom and Dad's psyche. As of this morning, he's back in a newborn bassinet and wearing clothes again.

Yesterday, Truman started having bowel movements and this morning was finally given the go-ahead to eat. His first food after six days without eating was a breastfeeding session with Mom. He did great and was given permission to breastfeed as I often as I can make it over today. So far, that's been twice, and he did great both times.

--Kara

Continuing to Recover

2006-11-23T13:18:00.000-06:00

CURRENT WEIGHT: 4LBS, 15 OUNCES

Truman continues to recover from surgery. He remains on the conventional ventilator because he is still indicating a lot of pain, which requires medication that could cause him not to remember to breathe. He is also still mostly out of it because of the pain medication, but he does wake up and acknowledge our presence. In fact, he seems to be bothered by my presence, as it reminds him of food. When he hears my voice or senses my presence (presumably by smelling me) he tends to start sucking vigorously on his breathing tube and crying (without sound, of course). As a result, I am trying to confine my visits to very brief stints until he's ready to be held and comforted, even if he still can't eat.

He is making some bowel sounds, so they may attempt to feed him tomorrow. Also, he gained about 4.5 ounces yesterday, so he is clearly retaining some fluid since the surgery. He also looks puffy throughout his trunk.

--Kara

All Put Back Together

2006-11-21T23:33:00.000-06:00

Truman's surgery went well this evening, and there were no complications other than a delay in the start time of the operation. Our anesthesiologist was called away on an emergency procedure for another patient which pushed our start time from 4:30 to 5:00, to 7:00, and eventually to 8:00pm. While it was frustrating to wait, it helped us to think that this time Truman wasn't the critical patient, and that he was healthy enough to wait for a while. That's progress.

Once the operation began around 8:00pm, it took about 90 minutes, of which about 60 minutes were actual surgery and the remainder was prep and clean-up. So now, Truman is no longer attached to an ostomy bag and there is no longer a large hernia in his abdomen, so he looks much better. Truman was intubated at the start of the operation because while he was under anesthesia he needed to have breathing support. He will likely be on the ventilator at least through tomorrow, and possibly for two or three days.

Shockingly, by the time we got to his bedside Truman was already waking up, even though the anesthesiologist expected him to be sleeping through the night. By the time we left his bedside, Truman was quite awake, opening his eyes completely, responding to our voices, wriggling his legs and torso, and squeezing our fingers if we offered them to him. He cannot make any sounds right now because the breathing tube keeps his vocal cords immobilized. Kara also thinks that he looks considerably larger than he ever has before. While this probably simply related to the fact that half of his abdomen isn't covered up with wax and ostomy bags anymore (as it had been for the past 11 weeks), it's still nice to see. Because of this, Kara was able to look at Truman tonight for the first time as her newborn, and not as her preemie.

The nurses seemed encouraged by his level of alertness and think that it might mean that he'll be ready to come off of the ventilator tomorrow. We'll just have to wait and see. Also, sometime in the last day Truman's tear ducts have started to work, and his eyes formed several tears while we were at his bedside after the operation. We wiped them away gently, but we were assured by the nurses that it was doubtful that the tears were a sign of pain because he did not have any of the other corresponding pain indicators like elevated blood pressure or excessive wriggling. In all likelihood the tears were simply a reaction to the heated air coming out of his new bed.

We've been told a variety of things regarding the time frame for expecting Truman to resume his feedings. The lowest estimate we've heard was from one of the nurses who said it might be 3 to 4 days, but the surgeon told us to expect 5 to 7 days. It's going to be a really unpleasant week if Truman has to go hungry for nearly 7 days, but we have to do what will allow his gut to heal in the best possible way. In the meantime, Truman will receive fluids through an IV and nutrition through a TPN line. We've also been moved back to the Level 3 critical care hall of the NICU, but we're still surrounded by many nurses and doctors we've come to know over the past 15 weeks, and this is much more of a leap forward than it is a step back.

Assuming there are no more complications (such as picking up another infection or something), Truman's challenges will now consist of healing up and recovering from this surgery, building up his energy reserve, and being able to take all of his feeds by breast or bottle. Once all of these criteria are met, he'll be homeward bound.

It seems that there is light at the end of the tunnel, and it's beginning to come into view.

--Ben

Surgery today

2006-11-21T10:14:00.000-06:00

CURRENT WEIGHT: 4 LBS, 9.8 OUNCES (2100 GRAMS)

Truman is getting ready for surgery today, which has been pushed back to 5 p.m. He had his last meal for a few days at 8 a.m. He breastfed like a champ -- even choking himself from being such a little piggy. Maybe he knew it was his last shot for a while. He'll be fed by IV nutrition for a few days before slowly starting food again. He will not be happy about this. He also got an IV this morning to begin preventive antibiotics and get blood before surgery.

--Kara

Still growing!

2006-11-20T10:26:00.000-06:00

CURRENT WEIGHT: 4 LBS, 9.4 OUNCES (2090 GRAMS)
CURRENT LENGTH: 16.2 INCHES

Truman had a very good weekend. He grew in all measurements (head, chest, etc.) on his weekly measurements. He is also about to outgrow his 3- to 5-pound clothes. It looks like regular preemie wear is coming soon. His feet are so fat that he needs newborn socks now.

Truman has developed a pretty significant flat spot on the right side of his head, so we now are placing him on his left and encouraging him to turn his head to the left when he's being held to try to stretch out the neck muscles and get the flat spot to even out.

He has discovered that he likes his bouncy seat and seems to enjoy hanging out in it and looking out the window when Mom and Dad aren't there. If Mom and Dad are there, he pretty much demands to be held. And if he's hungry and he hears Mom's voice, there's no consoling him until he gets fed.

His feeds have been upped to 40 CCs, or 1.3 ounces per feed. He continues to be restricted to only two breastfeeding sessions and no bottles until after his surgery tomorrow. He is such a hungry little boy that we are very worried about how upset he's going to be after the surgery when he is fed by IV for a few days because that will not satisfy hunger pains. Hunger seems to be the only thing that gets Truman really worked up other than being poked and prodded.

--Kara

Surgery Has Been Set

2006-11-17T09:58:00.000-06:00

CURRENT WEIGHT: 4 LBS, 5.4 OUNCES (1977 GRAMS)

Truman had only .8 ounces to go to reach the 2000 grams target this morning. However, we found out sometime in the last few days that the target is very arbitrary and is usually adjusted for each individual child. Because the neonatologists felt that Truman was ready a couple of days ago, the call to schedule the surgery was placed in advance of Truman actually hitting the 2000 grams mark. So, there is no longer a "magic number" that Truman has to achieve, and from here forward we can just worry about growing for the sake of growth, and don't have to be overly concerned that it will create an obstacle to surgery.

Initial results on the barium enema from yesterday look good as no strictures or other mechanical issues were found. The enema also managed to help Truman pass some lingering meconium a few hours later. We still don't know if they plan on doing another one before his surgery.

Speaking of the surgery, the time and date have finally been set: Tuesday, November 21st at 4:30pm. It's a tremendous relief to have it scheduled for many reasons, including the fact that Truman's abdominal hernia has continued to worsen over the last few weeks, and is now very pronounced. During the surgery to put his bowel back together again the surgeon will also repair the hernia. Also, living with an incomplete bowel and an ostomy bag have been hinderances to working up to full nippling and weaning off the nasal canula entirely. Once he has recovered (which could take a week or two) we've been told to expect faster progress.

Truman will have to be intubated and placed back on the ventilator again for this procedure, and it's likely that he'll remain on ventilation for at least a couple of days afterwards. There's also a good chance he'll lose some weight afterwards since he will be unable to take food in the same volume that he has been recently (remember, Truman has not used the lower third of his small intestine or any of his large intestine for the last 11 weeks, so they will have to be given time to adjust to resuming their normal function), which is part of the reason to fatten Truman up as much as possible prior to next Tuesday. In the interim he'll be put back onto a TPN drip, which provides needed proteins and amino acids, and is what Truman lived off of before he was able to start taking milk.

This certainly means that there will be no travelling for us over the Thanksgiving holiday, but we really don't care about that because this surgery is one of the last major hurdles Truman has to cross before being discharged and finally coming home.

--Ben

Day 101

2006-11-16T09:58:00.000-06:00

CURRENT WEIGHT: 4LBS, 4.6 OUNCES (1954 GRAMS)

We have not heard back from Truman's surgeon, but his neonatologist called the surgeon again today requesting surgery be scheduled for either Monday or Tuesday. Truman will have a barium enema down in radiology today, which is one of the preparatory steps for surgery.

His feeds were upped to 39CCs per feeding, which is 10.4 ounces per day or 1.3 ounces per feeding. He also cut Truman back to two breast feeding sessions per day so that he burns as few of calories as possible, but still keeps that skill and bond with Mom.

--Kara

Day 100

2006-11-15T12:05:00.000-06:00

CURRENT WEIGHT: 4LBS, 4.5 OUNCES (1951 GRAMS)

The call has officially been made! Truman's neonatologist called the surgeon this morning and left a message that Truman is ready for surgery.

Truman is getting his immunizations today, so he will likely be an angry boy this afternoon. However, this is one of those activities that will prepare him for discharge, so bring it on.

--Kara

Update: Tuesday, Nov. 14

2006-11-14T14:06:00.000-06:00

CURRENT WEIGHT: 4LBS, 3.8 OUNCES (1932 GRAMS)

Truman continues to gain weight. He seems to be responding well to fewer breast and bottle feeding sessions. Dr. Sudawahla said he would like to schedule the surgery for Monday. He plans to call the surgeon tomorrow. Let's hope he cooperates and gets Truman on his schedule.

Update: Monday, Nov. 13

2006-11-13T10:00:00.000-06:00

CURRENT WEIGHT: 4 lbs, 3.2 ounces (1913 GRAMS)
CURRENT LENGTH: 15.75 INCHES

Truman had a pretty good weekend. It became clear, however, that taking all feeds by bottle or breast is wearing him out. So, now the order is to attempt every other feed by bottle or breast. The calories for his milk have also been upped to 28 calories. They will also no longer wake him for feeds or diaper changes and assessment times. He can be gavaged without waking, and assessments and diaper changes will occur when he is awake. Currently, he is waked every three hours, assessed (listening to lungs, temperature, etc.), has his diaper changed, and is fed. Now, Truman will dictate such things rather than a schedule. Feeds will still be somewhat on a schedule.

Dr. Sudawahla told me this morning that he would like to schedule Truman's re-section surgery for the first part of next week. That is such an exciting prospect for us because it means that (assuming everything goes well and if Truman has a quick post-op recovery) we might be able to have this little boy home late this month!! He also said that his only goal for this week is get Truman to the 2000 grams he needs to be for surgery and worry about pushing him on feeds and getting off of oxygen altogether after the surgery.

--Kara

Time for Toys

2006-11-10T13:15:00.000-06:00

CURRENT WEIGHT: 4 LBS, 1.6 OUNCES (1869 GRAMS)

Truman is struggling a bit on the all breast and bottle feeds. At his 8 p.m. feeding yesterday, we spent about 15 minutes (unsuccessfully) trying to get him to wake up enough to nurse. After about 15 minutes of sleepy nursing, Mom offered a half bottle, and Truman proceeded to have two big Desat/Brady spells during the bottle portion. He required the oxygen mask to recover. We didn't even attempt to finish the whole half bottle. When Dad fed him at 11 p.m., Truman didn't have any trouble with desats or Bradys, but let half of the milk flow down his chin. Apparently, the 2 a.m. feeding wasn't much better, so the 5 a.m. feeding was gavaged. However, he nursed like a champ for half an hour at 8 a.m. and took his entire bottle in 15 minutes from the occupational therapists at 11 a.m. I talked to Nurse Mary this morning, and she suggested we give him another day and watch his weight (he only gained 3 grams yesterday) to assess whether he is using too much energy for feeding and needs to go back to the two out of three nipple feeds. She also thought Mom and Dad may need a little practice on bottle feeding Truman. We would hate to slow down his growth at this crucial point.

Nurse Mary thinks Truman needs more stimulation because he has such long alert periods now. So, she asked us to bring up his bouncy seat tonight and his mirror toy for his crib. He was staring at a picture of Mom and Dad taped to the side of his bed during this conversation. He also really loves staring at the lights on the ceiling of his room.

--Kara

No more feeding tubes!

2006-11-09T11:26:00.000-06:00

CURRENT WEIGHT: 4 LBS, 1.5 OUNCES (1866 GRAMS)

Truman has been the quite the champ at breastfeeding for some time now and appears to have officially gotten the hang of bottle feeding, although sometimes he tries to go too fast and gets his mouth too full. As a result, he no longer will receive any tube feeding. He will be getting everything from breast or bottle.

His feeds have increased to 35 ccs, which is about 1.2 ounces per feed or about 9.3 ounces per day, which doesn't seem to be enough to satisfy his hunger. However, because of his size and ostomy, they can't really increase food dramatically. It must be done incrementally so that he doesn't stool out too much. He hasn't shown any reflux symptoms in a couple of days.

Truman officially joined a South Hall (feeder grower) only team of doctors yesterday.

His microflow canula has been weaned to .02, and there is talk that it will be turned off tomorrow. His caffiene, which was given to help prevent brady spells, has been discontinued.

Truman's hernia is getting visibly worse. The bulge is now quite prominent even when he is not crying (initially it only showed when he strained). The nurses assure us that hernias are routine, particularly in baby boys, but it looks scary and painful nonetheless. Some of you have asked what a hernia is. When part of an organ or tissue in the body (In Truman's case, a loop of intestine) pushes through an opening or weak spot in a muscle wall, it can protrude into a space where it does not belong. This protrusion is called a hernia, and they look like a bulge or lump. Truman's is a large bulge just above his ostomy bag.

The increasing size of the hernia may be an impetus to push his surgeon (known for best both the best, but also for being a serious procrastinator) to do the reconnection surgery sooner. That means Truman needs some "Grow, Baby, Grow" vibes for that last 5 ounces.

--Kara

Three Months Old!

2006-11-08T10:20:00.000-06:00

CURRENT WEIGHT: 4 LBS, 0.9 OUNCES (1839 GRAMS)

After what appeared to be a massive weight loss the day before and a massive weight gain yesterday, we think Truman must have had a bad weigh on Monday night. So, we are not nearly so sad now that it appears he is still going on the right direction even with a couple of slow days or minor losses over the past week. It was just the major loss that we were particularly worried about.

Today, Truman took another full bottle from his occupational therapist. As a result, the order has been given for Truman to get two out of every three feeds from either the bottle or the breast (or a combination). The next step is full nippling, which is required for going home. His feeding tube has been moved from his mouth to his nose, which appears to be helping him achieve a better seal on the bottle nipple and more successful feeds.

Truman also graduated to a micro-flow canula today. It is set at .05 liters on flow, which is barely any flow at all and at 100 % oxygen. I asked if the increase in oxygen is a setback. Nurse Rebecca explained that it is a step forward because although it is 100 % on oxygen, the flow is barely there. What is particularly significant is that if a baby goes home on oxygen, this is the type they go home on. She explained that Truman is at a point where the hospital is beginning to test things out for what support (if any) he will need upon discharge.

Although Truman still has his bowel re-section surgery looming before he can go home, we've been told that putting a bowel back together is a simpler process than taking it apart. He's only 5.5 ounces from the target weight to be evaluated for surgery. It's such a huge step to finally be talking about discharge rather than it being simply some hazy target to far in the future to contemplate.

And finally, here are a few more photos. These are of Truman meeting his paternal grandparents up close for the first time, taken six days ago:

Gramma gets to hold Truman for the first time.

Truman has found a grip on Gramma's hands.

Meeting Truman up close.

Grampa gets to hold Truman for the first time.

Truman and Grampa.

--Kara & Ben

Weight Loss

2006-11-07T10:02:00.000-06:00

CURRENT WEIGHT: 3 LBS, 13.9 OUNCES (1763 OUNCES)

Truman lost about two ounces yesterday, which was a pretty sad blow to Mom and Dad considering how close we are to the "magic" 2000 grams needed to begin evaulating him for his bowel re-section. When you consider the gains and losses over the last few days, Truman has effectively not gained weight since last Thursday. To be this close to the big number and be losing or not gaining weight is very hard for us.

In some good news, Truman appears to be catching on to bottle feeding. He took an entire bottle yesterday from Nurse Lisa and took most of a bottle from Dad last night. This morning after breastfeeding like a champ, Mom topped him off with a half bottle (a little more than half an ounce) that he gulped down in about five minutes. He also took a full bottle from the occupational therapist this afternoon.

He has been increased to four "nipplings" a day -- either breast or bottle. He is still not very good at pacing himself with bottle feeding and therefore sometimes lets a whole mouthful run down his chin rather than swallowing it, but at least he has learned not to Brady during feeding. If he has trouble, he just lets the milk flow out while bottle feeding or pushes away during breastfeeding. I guess that's progress. However, the work involved in bottle and breastfeeding may be contributing to the weight loss.

As always, Truman is very cute and gets more alert and responsive every day. In particular, he seems to respond to our voices when we walk in the room. Truman also seems to be a pretty easy baby. Although he has a fierce temper when he is hungry or being messed with (like diaper changes, temperature checks, etc.), he loves being held and doesn't seem to cry just to cry. However, he does fuss when he is put back into his bed after holding until he is tightly swaddled and has a few minutes to calm down. (The pacifier works wonders for this). Nurse Stephanie commented today that although he gets so mad about being hungry, he is very awake and alert and very contentedly alert afterwards.

--Kara

Four Pounds!

2006-11-06T07:08:00.000-06:00

CURRENT WEIGHT: 4 LBS (1818 GRAMS)
CURRENT LENGTH: 15.5 INCHES

Truman reached four pounds on Thursday,had a day of no gain, lost half an ounce, and then regained to 4 pounds yesterday. I attribute the weight loss to a very stuffy nose that made breathing a lot of work for Truman on Friday evening and Saturday morning. After some deep suctioning and some anti-inflammatory nose drops, things appeared to have cleared up mostly. They think he was congested not from illness, but from the swelling and irritation that still remains in his upper nose from his time with the C-PAP prongs and all the fighting he did against them. The constant air flow from the canula also causes his nose to dry out and his body to respond to that dryness by making lots of snot. The flow on the canula has been weaned to .3.

The occupational therapists have not visited Truman since Thursday, so he has not tried bottle feeding since then. Mom and Dad will be raising that point today and reminding the hospital staff to get on the ball about his learning to bottle feed. Although bottle feeding is still slow going, breastfeeding is going very well, and we are up to three times per day -- quite the grueling schedule for Mom with a full-time job.

Truman continues to show signs of reflux issues. His bed has been permanently elevated for now, and the pump over which his gavage feedings go has been increased to 1.5 hours each time.

--Kara

Moving Day!

2006-11-02T11:45:00.000-06:00

CURRENT WEIGHT: 3LBS, 14.4 OUNCES (1776 GRAMS)

Truman has now moved to the Feeder Grower Nursery, or the South Hall, as it is called at Baylor. His primary nurses will travel with him.

Truman had a really great day yesterday. He has had no Brady or Apnea spells since his big one on Tuesday night. The consensus is that he was just worn out from all the activity of the early part of his week and is not getting sick. Nurse Lisa thinks the eye exam, in particular, tends to wear out the little ones.

Truman had two great breastfeeding sessions yesterday and another one this morning, including at least a little practice without the shield. The order was given today to move to breastfeeding three times a day, to the extent that Mom can accomplish that and still work full time. I guess the sleep deprivation will be good practice for when he comes home.

Truman had a good session with his occupational therapist yesterday afternoon and took 20 CCs by bottle -- the highest amount to date. According to Nurse Kim, he had no desats during the feeding and only needed an oxygen boost to about 40 percent. Truman, like many preemies, sometimes needs a little more oxygen while bottle or breastfeeding, but has managed to have the last three breastfeeding sessions without additional oxygen.

He lost nine grams yesterday, but that is probably due to the fact that Tuesday's large weight gain was probably a bit false due to the transfusion he had.

--Kara

Update: Wednesday, Nov. 1

2006-11-01T11:04:00.000-06:00

CURRENT WEIGHT: 3 LBS, 14.7 OUNCES (1785 GRAMS)

Truman gave us a bit of a scare last night. We had been informed of a major Brady during the prior night while sleeping (the Brady that prompted yesterday's blood transfusion). He had a small one while we were attempting to breastfeed yesterday morning and then last night while breastfeeding, he had a whopper of a Brady / desat spell. Couple that with some congestion he's been having, and he scared Mom and Dad quite a bit. We were very worried that he was on the verge of another illness. So, after the big Brady, they ordered a chest ray (which was clear) and an RSV culture (which came back negative). I think they did it mostly to make us feel better. He did great during the rest of our visit and all through the night. Also, he didn't act like he felt bad.

This morning, he was doing fine and had one of his best breastfeeding sessions ever. He hasn't been needing additional oxygen or more support on the canula. So, we're chalking everything up to exhaustion or perhaps reflux. Between an eye exam, a rough ostomy bag change, OT visits for nippling, two breastfeeding sessions a day, an IV placement (which has already been removed this morning), we think he was just really tired. But, they are keeping a close eye on him nonetheless.

He is up to 33 CCs (8.8 ounces per day or 1.1 ounce at a time) on feeds and has another OT visit scheduled this afternoon to work on bottle feeding.

--Kara

Halloween

2006-10-31T10:32:00.000-06:00

Our family's first Halloween together.

Mama's little Pumpkin.

Playing dress-up makes Truman tired.

Halloween orange doesn't really seem to be Truman's color, does it?

Truman managed to push off his stem. Whoops! Where'd that thing go?

CURRENT WEIGHT: 3 LBS, 12.7 OUNCES (1727 GRAMS)

Truman has now officially tripled his birth weight. He has slowed down the growth pace a little over the last week, but it's still above the goal most days. He must have been going through a growth spurt last week. His feeds were increased to 32CCs today, which is a little more than 8.5 ounces per day.

Truman had a couple of Bradys last night and another one after a relatively mediocre breastfeeding session this morning. It seems that he couldn't get a burp out. I think he was too tired to do much breastfeeding, which were reflected in his 02 levels while trying. I decided not to push him this morning. He's also still giving us signs that he's having some reflux issues.

Because of the Bradys and the hovering 02 levels, they decided to give Truman a blood transfusion today. He has an IV in his pretty little scalp again. We were told last night that Truman was next on the list to be transferred to the South Hall, or the feeder-grower unit. At that point, he was the most stable baby in the critical care nursery, but after last night's Brady episodes, he's no longer on the list for a move across the hall.

His ostomy bag had to be changed while I was there this morning. I got a look at the hernia that has developed above his stoma. It does not look good, but Sue assured me that it was pretty typical. It has caused additional intestine to be herniated out, so the stoma is growing in size, but it looks healthy, which is the thing to watch for. The hernia will be repaired when he has his bowel re-section before he comes home.

--Kara & Ben

Update: Monday, Oct. 30

2006-10-30T10:52:00.000-06:00

CURRENT WEIGHT: 3 LBS, 11.7 OUNCES (1700 GRAMS)
CURRENT LENGTH: 15.75 INCHES

Truman had a good weekend. He tried bottle feeding another couple of times. He only took 1 CC with Ben's efforts on Saturday. He took 15 CCs with Nurse Lisa's efforts on Sunday (and with a slow flow nipple), but it tired him out so much that he was zonked most of the day and was too tired to even attempt breastfeeding last night. Although we thought over the weekend that bottle feeding was going to be stopped for the time being, the occupational therapist came in this morning and worked with Truman on nippling and got him to take 6 CCs. The plan is for the OTs to work with him once a day. It's been decided that we will increase breastfeeding to twice a day. We're getting better at breastfeeding all the time, enough so that when he has a good session, we half his gavage feeding afterwards. His feeds are up to 31 CCs.

Truman has another eye exam this morning. His canula was weaned to .3, but he hovered a bit low, so it was bumped back to .5 liters of flow. He still remains mostly on room air.

For the first time, he decided to be awake and alert when his Papa Perry and Grandmommy visited and show his personality off a little. It made us proud!

Truman gets a chance to check out his Dad.

Truman is a little too tired to be very alert for pictures.

Daddy's MVP.

--Kara

Goodbye to the Isolette!

2006-10-27T10:43:00.000-05:00

CURRENT WEIGHT: 3LBS, 9.9 OUNCES (1649 GRAMS)

Truman graduated to a big boy bed yesterday! He is now sleeping swaddled in an open plastic bassinet -- the kind you see newborns in in a hospital nursery.

We learned yesterday that Truman will not have an ultrasound today because they have decided to forego future head ultrasounds in favor of an MRI closer to discharge. Because the last two ultrasounds showed decreases in swelling and bleeding, the hospital is confident that there is little to no chance of further bleeding or swelling. They will continue to monitor him by physical exam of the head and head measurements.

Truman will try bottle feeding again today or tomorrow with the assistance of an occupational therapist. Being able to bottle feed is an essential skill as "nippling" issues are often what cause a long-term stay for babies otherwise ready to go home, so keep your fingers crossed that he does well with it. The wee thumbie has now been banished and sent home with us because Truman is too big to be using it. He must try more challenging pacifiers like the Wee Soothie or the Newborn Soothie (notice no "wee" involved) that showed up yesterday. I guess it was probably the first of many times we will be scolded for babying our little miracle.

--Kara

P.S. Don't forget to scroll down and see the bath day pictures added to yesterday's post.

Bath Day!

2006-10-26T15:11:00.000-05:00

CURRENT WEIGHT: 3 LBS, 8 OUNCES

Truman enjoyed his first bath by Mom and Dad very much and only fussed at the end once the water got a little cold. Trying to dry off a tiny squirming baby was a challenge, but we loved it.

Here, Truman has been wrapped up in a heated hat and blankets before being put into the tub with a couple of centimeters of warm water in the bottom.

Truman in the midst of his first bath from Mom and Dad.

Kara gets practice at trying to dry Truman off.

Truman is almost dry...

Truman in his freshly cleaned birthday suit.

Truman had some desats overnight, so they put him back on the canula. Nurse Gayla assured us this is not a setback, but more of a break so that he doesn't tire himself out and use too many calories and slow his growth. The canula is set at .5 liters, but he's clearly proven that he can breathe on his own. They also ordered a round of blood tests to make sure that it is just fatigue rather than illness causing the desats. The initial results look fine.

We also learned that Truman had another eye exam that we didn't know about on October 16. Things still are progressing normally, and there are still no signs of plus disease -- the eye disease caused by oxygen exposure.

His feeds were increased to 30ccs today. That's a full ounce per feed or 8 ounces per day.

Some of you have asked when Truman will come home and whether there is a requisite weight he much reach. The short answer is that we don't know when he will come home, and there is no requisite weight. The goal for all preemies is their due date, which was December 5 for Truman. The average at Baylor is at 36 weeks gestation. Truman is 34 weeks now and clearly will not meet this average, due to his particular challenges. There are some milestones any preemies must cross and some particular factors in Truman's case.

Now for the long answer to the question: when Truman had the bowel surgery done, we were told that once Truman hit 2000 grams, or about 4 lbs, 6.5 ounces, he would be big enough for the re-sectioning of his intestine. Based on his current growth and the goals they have for his growth, he is projected to cross that magic number anywhere from the second week of November to just before Thanksgiving. Of course, he could go through another period of slow to no growth and stall that process, but we're hoping he continues at a reasonable pace. Once he reaches 2000 grams, he will have to be evaluated to see if he's ready for surgery, and of course, the surgery would have to be scheduled and performed. We've been told to expect about a week post-op recovery, which will include not only typical post-op recovery that any surgery requires, but also a new round of "gut priming" of the lower intestine. Remember, it hasn't really been used. Truman will have to work back up to full feeds after the surgery. He will also be intubated for the surgery and work back off of that.

In addition to his surgery, like all preemies, Truman needs to outgrow the desats and Bradys and be eating and growing at a good pace. That does not mean that he needs to be fully off of the canula to come home. Many preemies go home with a canula and apnea monitor. Although we hope he can leave the canula at the hospital, and we have confidence that he can, we do kind of hope he has an apnea monitor for our own peace of mind.

--Kara

Update: Wednesday, Oct. 25

2006-10-25T11:00:00.000-05:00

CURRENT WEIGHT: 3 LBS, 7.3 OUNCES (1573 GRAMS)

It's been exactly 24 hours without respiration support of any kind, and Truman is still doing beautifully. He had one Brady around 4 a.m., but no other "episodes" since being set free.

The brain sonogram that was originally scheduled for today has been moved back to Friday, so we won't have results by tomorrow, but by Saturday.

Truman had his single biggest weight gain ever yesterday - he went up 65 grams. That's about 2 full ounces!

Truman tried his first bottle feed today after Mom's breastfeeding session. It looks like he's not quite ready. He got through about 3 CCs before deciding it was just too much for him. Between that, a very snotty nose, and a feeding tube that turned out to not be all the way down to his tummy, he had a very rough 2 p.m. feeding with lots of desats. The whole process -- breastfeeding, bottle feeding, and tube (or gavage) feeding, took about two hours with all the starts and stops. However, Nurse Camille said the 5 p.m. feeding went smoothly.

Tonight, Mom and Dad are also scheduled to give the little guy a tub bath for the first time ever. Of course, that assumes, he's not too pooped from the stressful 2 p.m. feeding.

--Kara & Ben

Turning Canula Off!

2006-10-24T10:32:00.000-05:00

CURRENT WEIGHT: 3 LBS, 5.5 OUNCES (1508 grams)

Truman's canula was turned off at 11 a.m., and he's done wonderfully breathing all by himself since then (it's been 5 1/2 hours). He's even made it through a breastfeeding session and two feeds with only minor desats!

His feeds were also increased today to 28 ccs, or about 7.5 ounces a day. Just two more CCs, and he'll be at one ounce per feed.

There's talk that South Hall (the feeder/grower) wing is in the very near future!!!

Post edited at 4:30 p.m.

Still growing!

2006-10-23T11:38:00.000-05:00

CURRENT WEIGHT: 3 LBS, 4 OUNCES (1473 GRAMS)
CURRENT LENGTH: 15.5 INCHES
HEAD MEASUREMENT: 11 INCHES

Truman has really hit a groove with growth. This last week, he had an above average daily weight gain!! Finally, little man. Breastfeeding is continuing to go well, and his tube feeds are at 27 ccs, or 6.75 ounces a day.

He was weaned to .1 liters of oxygen on the canula this morning. Nurse Allison said it's possible to switch to a microflow, but it's likely that the canula will be taken off and Truman will be able to try breathing all by himself later this week.

Although he still struggles some with Brady/Apnea spells while eating and some desats when he gets really comfortable, he didn't have any overnight and hasn't had any so far today.

--Kara

Three Pounds and Then Some!

2006-10-20T18:40:00.000-05:00

CURRENT WEIGHT: 3 LBS, 1.5 OUNCES

Truman had his biggest weight gain ever yesterday -- 53 grams. That's almost two ounces. Way to go, little man, for the big push past three pounds. His nutritionist came by today and said that his average weight gain is now 19 grams per day. The goal is 15 to 20, so he's doing great now. His first set of onesies are almost too small. I feel so fortunate to get to complain that he only wore them for a week before starting to outgrow them. He can outgrow his clothes everyday, and it would be OK by us.

The flow on his canula was weaned back again today to .5 liters. He remains on room air to 30 percent most of the time.

His feeds were increased to 27 ccs per feed, or 6.75 ounces a day. Truman and Mom had another great breastfeeding session today with the consultant. He's doing great with suck-swallow-breathe coordination and can even be heard gulping. He breastfed for about 20 minutes or so. It's been really special to feel like a real Mom. We're still having a little trouble with the burping afterwards. I'm not sure if the problem is Mom or Truman, but we'll keep working. He had a pretty big Brady about 15 minutes after his breastfeeding session. Nurse Glynnis thought it might be that he was trying to burp, so we decided to cuddle him more upright after feeds. The lactation consultant said he was doing really well with other developmental signs during breastfeeding like opening and closing his fists, reaching out and touching Mom and his own face during feeding. He also seems to really enjoy it and respond to the cues to drink more from Mom.

--Kara

Breastfeeding Success!

2006-10-19T15:34:00.000-05:00

Truman and Mommy had a date with the lactation consultant this afternoon. Truman did beautifully and our LC said he was doing some great nutritive sucking. We had about a 20 minute session and even burped afterwards -- a very tiny, cute burp.

Afterwards, about halfway through his regular tube feed, he decided to have a couple of big desats. Mommy has a suspicion, as do some of the nurses, that his tummy was just full.

Almost 3 Pounds!

2006-10-19T11:31:00.000-05:00

Current Weight: 2LBS, 15.6 OUNCES

Truman is 10 grams shy of 3 pounds! He gained a whopping 31 grams yesterday (an ounce is about 30 grams). We're hoping he makes the big leap today.

Truman and Mom had a big milestone -- our first attempt at breastfeeding. Up to this point, Truman has been fed with a tube running down his throat into his tummy. Yesterday was the first time he had any liquid in his mouth. It's easier for these little ones to learn to eat orally at the breast rather than by bottle, so his first little try was last night. The session went OK. He seemed to realize that there was something that he liked the taste of and got latched on a few times and got a little milk. He tried for about five minutes before he decided to have a Brady/Apnea spell. I guess he doesn't quite have the "breathe" part of suck-swallow-breathe down. Overall, I think the session was successful because he got a latch and got a little milk without choking or getting fussy. We'll try again today with a lactation consultant. The breastfeeding sessions won't replace any of his scheduled feeds until much later when he gets the hang of things, but we're still enjoying trying.

He was weaned this morning from 1 liter of air flow on his canula to .8 so his respiration improves every day. He's still primarily on room air. He has some desat spells, but he usually self corrects and most are related to feeding.

--Kara

Update: Tuesday, October 17

2006-10-17T10:15:00.000-05:00

CURRENT WEIGHT: 2 LBS, 14.8 OUNCES

Truman is still doing well on canula. He has had a few episodes in which his blood oxygen saturation gets a little low, but none of them have been severe yet. His caffeine dosage was increased to 8 milligrams to help keep him stimulated to breathe. Truman also seems a lot happier without the nose prongs, and doesn't fight and strain nearly to the same degree that he did before. While the canula is more work for him than the CPAP (he now has to open and close his lungs entirely rather than having them always partially inflated), he is without a doubt more comfortable now. He is doing better on the canula this time around, having already gone more than 40 hours (and on lower settings) than he did on his first try.

He is up to 26CCs on feeds and has gained 45 grams (about 1.5 oz) over the past two days. Woohoo! They also added 2 more calories of fortifier to his milk. And yes, we caved to the pressure and added a few pictures below for all of you to see.

Here you see Truman finally getting the chance to wear some clothes (courtesy of chickenlittlepreemie.com - thank you!). Pretty much anything you've ever seen in the newborn clothing section of a store is still far too big for him, but wearing clothes of any size is still good progress! What you see here is a specially tailored micropreemie outfit, and it does the job nicely. This photo was taken a few days ago, before Truman moved to the nasal canula.

Here, Truman finally gets the chance to meet his Grandmommy up close. Truman is now big enough to let his grandparents hold him if he's been swaddled up.

Truman and his mom during one of his kangaroo care sessions after he was moved to nasal canula. We try to do a couple hours of kangaroo care every night.

Here Truman is getting the chance to try out his "Wee Soothie" pacifier. Yes, it looks huge as it covers up half of his face, but it's still smaller than most pacifiers (although it's a little bigger than the "Wee Thumbie" that he's used a lot by now). This "Wee Soothie" still requires us to hold it in place for Truman most of the time, because it's a little too big for him to keep it there by himself. This pacifier is still smaller than the smallest bottle nipples used when bottle feeding.

--Ben & Kara

Back on Canula!

2006-10-16T13:14:00.000-05:00

CURRENT WEIGHT: 2 LBS, 12.9 OUNCES
CURRENT LENGTH: 14.75 INCHES

As of 6 a.m. this morning, Truman is back on nasal canula! He's had one Apnea/Brady episode since he was upgraded, but there is discussion this time about upping his caffeine dosage to aid with the canula. Although we're not quite sure he's big enough for canula, he definitely is tired of the nose prongs. In recent days, he has spent an increasing amount of time fighting them, pulling them out, and being generally agitated. Let's hope the graduation up to canula lasts longer this time!

Truman is handling the work of maintaining his own temperature quite well, although being dressed and undressed is no easy feat. NICU-designed clothing makes it a lot easier, i.e. nothing gets pulled over his head and everything opens up flat for ease of access, but he still does a lot of wriggling during the process. Thanks again to the folks at places like Chicken Little Preemie who actually make clothes for babies this small.

We continue to be frustrated with the pace of his growth. He is up to 2lbs, 13 ounces (almost). But, we looked back at our journal and realized that he has only grown 12 ounces this month. He also grew 12 ounces during his first month of life, but most of that growth was compressed into a couple of weeks because he didn't grow during his gut issues. The idea of a Thanksgiving homecoming is no longer viable unless he gets some miracle growth spurt. Now, we are hoping for Christmas, which is actually three weeks after his due date.

We discovered this weekend that Truman is not a born Longhorn as Mom would hope. On Sunday afternoon, we brought up the new Halloween receiving blanket that Grandmomy made for the top of his isolette. When we removed the blue one and replaced it with orange, Truman looked around at it for a few seconds and took it all in before beginning to scream. So, we put a white blanket under it to temper the orange and that seemed to please him. Maybe he was just telling us that it needs to be burnt orange (rather than bright, Halloween orange) to be his true color.

He's Wearing Clothes!

2006-10-13T18:31:00.000-05:00

CURRENT WEIGHT: 2 LBS, 11.5 OUNCES

TEMPERATURE: Truman has always had a pretty easy time maintaining his body temperature. As of today, he is on air control, which means that the isolette no longer reacts to his body temperature and adjusts the air temperature to suit him. Instead, the air is set at a certain temperature, and he is clothed and swaddled and expected to keep his own temperature in check. He is so cute in his micropreemie (up to 3 lbs) onesie.

RESPIRATION: Truman was weaned to straight C-PAP (no back-up breaths) today and is doing very well. He is still very annoyed by the prongs. He is still on track to move back to canula next week. If he has trouble with straight C-PAP or canula, the plan is to increase his caffeine dosage (which is currently minimal, something like 2 out of a possible 10) before increasing respiration support.

FEEDINGS: Increased to 24 CCs per feed. That's 6 ounces per day. He still tolerates all his feeds quite well and knows his feeding schedule and lets the room know when he is hungry.

NEURAL SCAN: The swelling in the ventricles remained stable and showed no change. The bleed in the basal ganglia area has decreased slightly.

MEDS: Truman is off of the phenobarbitol for his liver because his bilirubin level is quite low. He has been off of thyroid medication for a few days. The orders for morphine and atavain were stopped today, so it's up to Truman to remain calm and collected without any medication support. However, he hasn't been sedated with either one in quite some time because they were both IV only, and the IVs have been out for several days now.

OTHER UPDATES: He has graduated to a bigger baby isolette rather than the giraffe isolette for tiny babies. He had his first tub bath yesterday. He smells a lot better and his hair is lighter now that he's had a good scrub. Tub baths are not normally given to babies on C-PAP. Well, Truman wanted one really bad because yesterday, he had a colossal fit and pulled out his C-PAP prongs, strap, and even the sticky velcro tabs from his face. He also pulled out his feeding tube and managed to get his temperature probe wound around his neck during this fit. So, since he was all free anyway, Nurse Lisa gave him a bath. She said he did very well, was very alert and responsive during the bath, and did well without any respiration support for an hour during the bath.

He had another big fit today, so Lisa got him out and held him and rocked him a bit to soothe him. He really loves being held.

Update: Thursday, Oct. 12

2006-10-12T13:58:00.000-05:00

CURRENT WEIGHT: 2 LBS, 11 OUNCES

Truman gained a full ounce yesterday -- exactly the kind of progress Mom and Dad like to hear.

He was weaned back to 5 back-up breaths on the C-PAP today. I think he's trying to convince the doctors to take him back to nasal canula sooner. Last night when we got to the hospital, he had one prong completely out and sticking up near his eye and the other almost out. He's a very crafty little boy! Maybe reading him adventure stories isn't the best motivation right now. Currently, Mom is reading "The Hobbit" to him, and Dad is reading him "Prince Caspian" from the Chronicles of Narnia series.

He had another brain sonogram yesterday, but we haven't heard results yet.

--Kara

Update: Wednesday, October 11, 2006

2006-10-11T15:07:00.000-05:00

Truman gained a half ounce yesterday, bringing him to 2 lbs, 10 ounces. Another CC was added to his feeds to make them 23 CCs per feeding, or 5.75 ounces a day.

He's still doing well on C-PAP, although he hates the nose prongs tremendously and spends much of his awake time trying to come up with new ways to try to get them out of his nose.

--Kara

Back on C-PAP

2006-10-10T14:23:00.000-05:00

WEIGHT: 2 LBS, 9.5 OUNCES(ALMOST)

Truman performed beautifully for about 29 hours on nasal canula before he just tuckered out and had to go back to C-PAP. He has a back-up support of 10 just like before he went to canula. The doctors think that they might try again in another week after he has had a chance to grow more. His sats are good, and his oxygen pretty well stays at room air, so the C-PAP works well for him. However, Truman really hates the nose prongs on the C-PAP. As a result, he can't really sleep on his tummy anymore because he has figured out how to lift his upper body and stretch his head back to try to pull the prongs out. He's amazingly strong and willful for such a little one.

Truman is still having trouble gaining weight. He only gained 5 grams yesterday. They added protein powders and vitamins to his feeds today to try to help him grow. They can still add a few calories, but they don't want to give him more calories than his gut can handle just to have him stool it all out. So, it looks like it will be a process of small tweaks for small gains for the time being. But, it's time to grow, baby, grow, or he will be in NICU for a lot longer.

--Kara

A Huge Step: On the canula!

2006-10-09T11:22:00.000-05:00

WEIGHT: 2 LBS, 9 OUNCES
LENGTH: 14.5 INCHES

Truman made a very big step on his two-month birthday yesterday -- he graduated from the C-PAP machine to a nasal canula. A nasal canula is simply an oxygen tank like what you see people on oxygen carry around with them. The oxygen setting is at room air, and the air flow on his canula is set at a pressure of 1.5 out of a maximum of about 2.0. They considered weaning the flow some during the morning rounds today, but since he is so new on canula, they decided to wait a little longer. He's doing wonderfully on the canula, often high-satting. He's had a few de-sats, but only very small ones that he recovers from without adjustment on his oxygen levels. He also seems to be much happier without the huge prongs in his nose, and we're happy that his face is no longer obscured by velcro straps or tape, just clear little tubes over his ears. The canula is the last step before coming off all respiration assistance, but it generally takes a long time to move completely off. Some babies go home with a canula.

He did not grow yesterday, but he didn't gain either. He grew a quarter inch last week. We are really hoping he hits a growth spurt or at least picks up the pace soon or we are going to be in for a very long haul in NICU. However, there were hints last night that he's getting close to moving to the South Hall (the feeder grower nursery).

Truman had his first baby shower yesterday and received many generous and wonderful gifts. We really appreciate the love and support from all those from our home church in Lubbock who threw the shower for him. As I said many times during the shower (yes, it was my first time away from him), after all the sadness and mourning that accompanies a premature birth, it was time to celebrate the birth of our beautiful little boy.

--Kara

Gaining Weight Again

2006-10-07T08:48:00.000-05:00

CURRENT WEIGHT: 2 LBS, 9 OUNCES

After two consecutive days of weight loss this week, Truman has now had two days of weight gain. The medical staff would like to see a faster weight gain, so the doctors and nutritionists are working on ways to tweak his feeds to get just the right amount of calories at just the right volume -- so that he gets enough extra calories to grow, but not too much for his still very small tummy to process.

As of today, his feeds have increased to 22 CCs per feed, which is 5.5 ounces of 24-calorie milk per day. Breast milk is about 20 calories per kilo (kilo of what I don't know). They have added four calories of human milk fortifier and two calories of oil (yes, clear oil) to his feeds to reach a total 26 calories. Dr. Nama has discussed adding another four calories of fortifier and some protein powders and vitamins if necessary.

Respiration is still going well. He stays on room air almost all of the time and has a back-up rate on the C-PAP of 10 breaths per minute. He still has some slight desats into the 70-percent oxygen range, but he recovers on his own generally. And, the de-sats are almost always prompted by anger or fidgeting, rather than lung issues.

To explain what a de-sat is, taking air into the lungs is not what breathing is about. It's about taking that air and then transferring the oxygen from the air into the bloodstream to have proper oxygenation of the body. Truman has a monitor that measures the oxygen exchange in his blood. The goal is to have anywhere from 82 percent to 95 percent oxygenation. Less, the body is not getting enough oxygen throughout. More (unless he is set on room air), he is getting too much oxygen through the machine, which can have negative side effects to the eyes and brain. When we say that he "high sats," it means that he was set to receive room air and still managed to have oxygenation above the 95 percent mark. If he is on room air, high-satting is a good thing.

In fun non-medical Truman talk, he is developing quite the temper and quite the scream. He doesn't fuss too much about being taken out of his isolette for holding, but he can get VERY anger upon being put back. He really loves touch. He soothes fairly well with a pacifier or having his hair lightly stroked, but sometimes he just needs to scream a little. He also starts to wake and get a bit fidgety and fussy about an hour before feeding time and can get downright angry about 10 or 15 minutes before.

He also likes to put his fingers, knuckles, hand -- whatever he can fit and aim -- into his mouth. Sometimes he only gets close enough to lick, but he tries anyway. He also like to puts his hands on the side of his head or up near his face and can really do some serious sucking with his pacifier or feeding tube. In fact, when the breast milk starts hitting his tummy from the feeding tube, it often prompts him to suck on the tube (or whatever is available). One of his nutritionists said these are all good signs for when he starts learning to bottle feed in a week or so because they are signs that he will not have some of the oral aversion issues that preemies have from being intubated so long.

--Kara

Progress Slowing a Bit

2006-10-04T13:50:00.000-05:00

Truman lost a little weight yesterday. He is down to just under 2 lbs, 8 ounces. His back-up support on the C-PAP had also been lowered to 5 breaths per minutes, but due to some de-satting, it's been raised back to 10 breaths per minute. The fortifier for his breast milk was raised by 2 more calories to help address the weight loss. His nutritionist also said that protein powders might be added to help as well.

All in all, he's doing quite well, but we don't like to see him lose weight. He needs to gain and gain steadily to get big enough to come home someday.

--Kara

Double his birth weight!

2006-10-03T09:55:00.000-05:00

Truman now weighs 2 lbs, 8.5 ounces, officially doubling (and then some) his birth weight of 1 lb, 4 ounces.

He was having a little trouble with the increased milk volume and was having some Brady/Apnea episodes during feeds, so the the time on the pump that delivers his breast milk was increased to an hour. That seems to have mostly done the trick. They think his tummy was getting too full too fast and squashing his lungs a little.

In case you were wondering exactly how food is delivered, there is a little plastic tube that he swallows (you can see it in all face pictures). Initially, the milk was simply injected into the tube and went straight to his tummy. Now, the syringe full of milk is set on a pump, while injects it into the tube slowly over the course of an hour. The pump is not attached to his body, and the tube is simply swallowed. Lately, he has learned to gag if the feeding tube is removed and a new one inserted.

In two to three weeks, we will begin teaching him to bottle feed. Once he gets the hang of that, we will begin learning to breast feed.

--Kara

Off TPN!

2006-09-30T12:12:00.000-05:00

WEIGHT: 2LBS, 7 OUNCES
LENGTH: 14.25 INCHES

As of Saturday, Truman is sustained by breast milk alone!! He's up to 21 CCs per feed or 5.25 ounces per day. He's off the TPN, and the PLL (the line that was used for IV-nutrition) is gone. That means he has no IVs, lines, or anything needle-like in him, and all his limbs are free to wriggle and grab.

He still has some leads on monitoring his vital signs and the prongs in his nose for the C-PAP machine. He is doing very well with respiration. The C-PAP is on a back-up support of 10 breaths per minute, and he has been on mostly room air for several days now.

He slowed down some on growth this week and even lost weight a couple of days, but he's regained what he lost. He did not grow in length this week. We're hoping he picks back up to his prior pace of an ounce or so a day or we are in for a very long stay in NICU.

Truman had his first eye exam this weekend. Both eyes are on track and developing normally. One is even a little ahead. And, he does not have the eye disease caused by oxygen exposure! The next eye exam is in two weeks.

He has his voice back completely now. He likes to grunt a lot when wriggling, and he can definitely cry when he's mad. Last night, he decided to get mad when we put him back in after holding, and he let us know. But all it took to calm him down was a pacifier and some touch from Mom and Dad. His nurse said we were good with him. That was really nice to hear.

We are doing a lot more with him these days. Last night, we both took him out and put him back for the holding. I also aspirated his nose (or at least I tried). I guess we realize he's not so fragile anymore, and we've got to start learning sometime. Becoming comfortable in NICU is definitely a mixed blessing.

--Kara

Update: Friday, Sept. 29

2006-09-29T14:43:00.000-05:00

CURRENT WEIGHT: 2 lbs, 7 ounces

Truman gave me a present when I got the hospital today. He let me hold him all swaddled up like a regular baby. It was the first time I've held him and been able to see his face at the same time. I know I'm biased, but he's the cutest baby there ever was all wrapped up like that.

We talked and read for more than an hour. He was quite cozy and his oxygen levels were beautiful (that is after we got all the snot cleaned out of his nose from the sneezing he did just before I held him). Nurse Bev said that he had been alert a lot today and she just thought he needed extra attention. I also got to lift him back into the isolette when we were done. It reminded of just how little he still is.

He is up to 14 CCs (3.5 ounces a day) on his feeds and is tolerating them wonderfully. Nurse Bev said his PLL line (the central line that the IV nutrition goes in) is near the end of its life. There's talk that when it has to be pulled in the next few days that it might not be replaced. We've just got to get enough milk volume to take its place before then.

--Kara

Free of the ventilator again!!

2006-09-28T13:44:00.000-05:00

CURRENT WEIGHT: 2 LBS, 6.5 OUNCES

Truman is very happily free of the tube down his throat this afternoon. He has returned to C-PAP. Within just a few minutes of the change, he was back down to room air, sneezing about the prongs in his nose, and trying to squeak out some noise. I'm sure within a couple of days, he'll be able to scream as loud as ever when he wants attention (or food). And boy does he start grousing about being hungry when it gets close to meal time.

Speaking of food, Truman is up to 13 CCs (3.25 ounces per day) and is tolerating feeds quite well. Human milk fortifier has been added to give him additional calories.

His arterial line is coming out today. Although it was still in, they allowed us to resume kangaroo care on Tuesday night figuring that if the line came out, it would be a mess, but he'd be fine without it. His IV was removed yesterday. Once the arterial line is out, Truman will be down to one line only. And once he gets up to full feeds and TPN can be stopped, his PLL will be removed and he'll be line free.

We got preliminary results of his Wednesday morning neural scan last night. The swelling in both ventricles has decreased, and the bleed has decreased as well. We don't yet have details as to how much improvement there was, but it was improvement nonetheless!

In fun details, Truman is growing more hair. It's getting thicker and a little darker. It's still very blonde, though. It's also getting long and is growing down onto his neck and over the tops of his ears. I think he'll need a haircut before he comes home.

--Kara

Truman Update: Tuesday, Sept. 26

2006-09-26T08:32:00.000-05:00

CURRENT WEIGHT: 2 LBS, 4.5 OUNCES
CURRENT LENGTH: 14.25 INCHES

It appears that Truman is all better. He looks good, his vital signs are good, and the infection appears to be gone. His ventilator settings have been turned down to pressure support only, and there's a rumor he'll be extubated straight to C-PAP today.

We haven't gotten to resume kangaroo care because he has an arterial line in. Once that's out, we'll be back to holding our little one. The line might be pulled today, but they may wait until after a round of lab work scheduled for tomorrow morning.

His bilirubin levels are back up a little. Dr. Nama thinks it's from use of TPN which can cause liver damage over time. So, he added an IV medication to help with that called phenobarbitol. Truman is currently on 10 CCs of breast milk, which Dr. Nama said is about half way to full feeds. Once he reaches "full" feeds, the TPN will be stopped. Dr. Nama thought that would be within the next 10 days or so.

Truman gave us a big show on Sunday night. He was wide awake for about an hour and 45 minutes while we were there. His eyes were wide open. He was looking all around, wriggling around on his bed, and waving his arms. He even smiled a few times. Yes, we know it was probably involuntary, but it was adorable none the less.

--Ben & Kara

Afternoon Update: Saturday, Sept. 23

2006-09-23T19:13:00.000-05:00

Truman graduated back to the conventional ventilator this afternoon. His blood gas a few hours after the change looked great. He is also much less swollen today and is starting to look like himself again. Below are a few pictures taken on 9/23.

Although Truman has been intubated again, he has been resting peacefully for the last couple of days. You can see his Kara's hand here, letting him know that she's there.

An afternoon visit from Truman's aunt.

Spot the Cow looks in on Truman.

--Ben & Kara

Progress Report: Saturday, Sept. 23

2006-09-23T13:09:00.000-05:00

Truman is getting better. His blood count, specifically his CRP (C-reactive protein) count appears that the antibiotics are working and lessening the infection. There is still is no word on what the infection was, and I doubt we will ever now. Dr. Khattak said that about 10 percent of bacteria simply do not grow on the cultures. His vital signs all look great, and he is more active and starting to act more like his normal, feisty self. He was very lethargic for several days, so it's good to see him opening his eyes and responding to us again.

Nurse Bev said earlier today that if his blood gases continue to look good today that he might graduate back to the conventional ventilator today. He's been on room air for a couple of days, and his settings keep getting lower on the vent.

Feeds were started back on Friday. He's back to 6 CCs at each feeding, or 1 1/2 ounces per day. He's handling those really well.

He continues to gain weight. He is at 2 lbs, 6.5 ounces. However, some of that is fluid retention. Between the extra fluid he's been given to fight the infection and the fluid retention caused by the infection and the antibiotics, he looks like the stay-puff marshmallow man right now. He has no chin. Even his ears are puffy. Dr. Khattak and Nurse Lisa said that will probably decrease over the next week or so once he's off the antibiotics. I think he finishes those on Monday.

--Kara

Thursday, Sept. 21 update and Neural Scan Results

2006-09-21T11:28:00.000-05:00

Truman's nurse said this morning that his blood count looks like the antibiotics are starting to work. Most of these antibiotics are used over a 10-day course, so we're hoping to see marked improvement by Monday, September 25th. We still don't know what he has, and the cultures are still negative, but it looks like he's making some progress toward getting better. His heart rate was lower yesterday, and his blood pressure was higher -- both positive signs. He also started stooling into his bag yesterday after several days of not doing so. Dr. Khattak said that is a positive sign that he's getting better as well.

Dr. Khattak also reported the latest head scan results, showed us the images, and talked with both of us about the results again. The swelling in the ventricles has increased. He will now be given weekly neural scans to watch for increased swelling. If it continues to increase, they will consider a shunt or a type of reservoir placed into his head to drain the fluid and relieve the pressure on his brain. While the ventricles themselves are not brain tissue, if they continue to swell they can place pressure on the surrounding brain tissue and cause damage. Because Truman's skull is still soft, he probably still has some room to go with swelling before the pressure causes serious problems. Both of his ventricles are currently classified as having Grade III bleeds.

Regarding the bleed that is in another area in Truman's brain, Dr. Khattak said it is starting to "organize," forming a pit or cyst in the area that the bleed occurred. In the scan two weeks ago, there was some resolution on the bleed, but the bleed has not decreased in size during the last two weeks. Because it is organizing, Dr. Khattak said that the radiologists and neonatologists believe that it will not resolve any further and that area will be permanently damaged. However, he stated that it is a very small area of his brain and that it is a good thing that the blood is not surrounding the ventricles. For the first time, we talked about what goes on in that portion of the brain. He said that the damaged portion of the basal ganglia controls some motor functions and thinks that the results of the size and location of Truman's brain bleed leaves him with about a 30 to 50 percent chance of cerebral palsy. He said we should be hopeful that this would not be the typical type of cerebral palsy that one generally thinks of, but more likely something like a twitch or involuntary movement of limb that won't render it unusable like most palsy does. Of course, all of this is simply an educated guess. Only time will tell the true results of Truman's brain bleed.

Truman's weight is still at 2 lbs, 5 ounces. The plan is to start feeds again tomorrow. He is still on the high-speed ventilator and will probably be there for another week or more.

--Kara & Ben

Morning Update: Wednesday, Sept. 20

2006-09-20T08:38:00.000-05:00

Truman continues to remain stable. However, his illness continues to remain a mystery.

He now weighs 2 lb, 5 ounces, but the staff believes the large gain is due to fluid given to him to fight the symptoms of his illness.

Update: September 19

2006-09-19T14:28:00.000-05:00

WEIGHT: 2 lbs, 3 ounces
LENGTH: 13 1/2 inches

Dr. Khattak said that Truman is doing better today. His heart rate is lower and his ventilator settings are lower. They were able to wean him from blood pressure medication overnight, but he was back on it by mid-day. He has also had to go up a little on his oxygen settings since the night.

All of the blood cultures are still negative, including the fungal culture. They still can't figure out what he's got, but he appears to be slowly getting better. Truman is still very sick though.

He's sedated so that he doesn't breathe over the ventilator. It will be a few more days before the breast milk feeds are started again.

Dr. Khattak estimated yesterday that Truman would be on the high-speed ventilator for another 10 days to two weeks. As long as he is on this ventilator, there will be no kangaroo care.

--Kara

Another step back

2006-09-18T13:39:00.000-05:00

As of about an hour ago, Truman is back on the high-speed oscillating ventilator. He wasn't blowing off enough CO2 on the conventional ventilator. I guess it's back to the beginning on ventilation.

We still don't have any results on the blood cultures.

--Kara

Sick and Back on the Ventilator

2006-09-18T09:08:00.000-05:00

Truman has had a tough weekend. He is clearly sick. His blood count yesterday shows that he's fighting something, so more blood cultures were ordered. On Friday, his blood count was only slightly "shifted," and those blood cultures haven't grown anything.

After doing fairly well on Sunday, he had a big Brady/Apnea episode during the early afternoon and was clearly struggling to breathe during our afternoon visit. We arrived right after the episode, and spent the whole visit rubbing his back or annoying him in other ways to make him breathe.

During the dinner break, we got one of the dreaded calls from the NICU. He had had his worst Brady yet and had to receive chest compressions to get his heart rate back up this time. His lungs were also bagged during this episode, which lasted a few minutes, to keep him breathing. Knowing that adults don't receive CPR unless their hearts have stopped altogether, I assumed this is what happened, but we later learned that preemies get chest compressions when their heart rates drop below 60. Truman got into the 30s during this episode. Thinking his heart had stopped was a very scary time. He also got a shot of epinephren during this episode, so his heart rate was very high when we arrived at the hospital soon after.

He was re-intubated during this episode. He's back on the conventional ventilator and was completely "riding the vent" (letting it do all the work) last night, which is actually a good thing because he is so exhausted from trying to fight this infection and breathe at the same time that he really needs to rest. Preemies just don't have the energy reserves that the rest of us do. During the episode his O2 saturation dropped to the 30-percent range as well, and he had been fighting low oxygen saturation and episodes of stopped breathing all day.

The docs and nurses think he just got too tired trying to fight an infection and breathe. He was awfully small to be on the C-PAP anyway, and we had been told most preemies fail the first time they are extubated. He just took a long time to do so. We still wonder whether he could have continued doing well on it if he had not gotten sick.

During the night, he's had trouble with low blood pressure, so he's back on Dopamine this morning. He also had a blood transfusion this morning. They ordered more blood cultures because they think the infection is bacterial, but neither of the first two cultures have grown anything. He's been put on three broad-spectrum antibiotics in the hopes that one will do something. They were doing some blood tests this morning to see the "peaks and troughs" on the antibiotics to tell whether they are at the right amount and whether they are doing anything for him.

Before yesterday's episode he was down to one IV, but overnight last night he had another IV put back in as well as an arterial line, so he has only one free limb now.

Breast milk feeds were also stopped yesterday while he recovers from this illness. They don't want him to start rejecting milk just because he's sick, and Dopamine makes it hard to digest things.

I guess there's a reason they call it the NICU roller coaster.

--Kara

Illness Update: September 16

2006-09-16T14:54:00.000-05:00

As of 2 p.m., Truman's blood cultures haven't grown anything yet (after about 17 hours), but they won't declare him negative for infection until 48 hours have passed. He's got a lot of yellow mucus build-up in his nose and throat, so it looks like there probably is an infection or at least he was starting to get one that may have been caught early. His chest x-ray today also shows fluid around his lungs, so they gave him a diruetic to help him urinate off the excess fluid.

He also looks a little pale. He had a big apnea/Brady episode while we were there, but after they suctioned his nose, he did a lot better and pinked up a little more. We're hoping that the 48-hour antibiotic course will be enough of a boost to fight past this infection.

His feeds are still going well. He's up to 10 CCs, which is 2 1/4 ounces a day. He actually lost about 5 grams yesterday, but still comes in at 2 lbs, 1 ounce.

--Kara

Small Setback

2006-09-15T23:34:00.000-05:00

It looks like Truman may be battling an infection. He had four big apnea spells this afternoon, and his blood count has "shifted" slightly. He also is less active and is acting like he doesn't feel well. So, they put him on two antibiotics, and put him back on nasal prong ventilation. He's getting 15 back-up breaths a minute.

We expect to get preliminary results from his blood culture in the morning.

--Kara

Progress Update: September 15

2006-09-15T08:47:00.000-05:00

Truman is now 2 lbs, 1 ounces and up to 8CCs per feeding, which is 2 ounces per day. He's continuing to get bigger every day!

Some of you have asked based on these pictures if he's back on the ventilator. Nope, he's still doing well on C-PAP. The white strap is holding the C-PAP prongs in his nose. It just looks awfully big on such a little face.

Two Pounds!

2006-09-14T10:16:00.000-05:00

Truman has reached two pounds, and he finally has two sets of cheeks -- one on top and one on bottom! Otherwise, no real updates. He continues to do really well. His primary nurse said if he continues on this pace, we might have him home by Thanksgiving.
--Kara