Teeny Tiny Truman

This page is all about Truman, born Aug. 8, 2006 to Kara and Ben.

Tuesday, October 31, 2006


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?


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

Monday, October 30, 2006

Update: Monday, Oct. 30


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.


Friday, October 27, 2006

Goodbye to the Isolette!


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.


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

Thursday, October 26, 2006

Bath Day!


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.


Wednesday, October 25, 2006

Update: Wednesday, Oct. 25


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

Tuesday, October 24, 2006

Turning Canula Off!

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.

Monday, October 23, 2006

Still growing!


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.


Friday, October 20, 2006

Three Pounds and Then Some!


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.


Thursday, October 19, 2006

Breastfeeding Success!

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!

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.


Tuesday, October 17, 2006

Update: Tuesday, October 17


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

Monday, October 16, 2006

Back on Canula!


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.

Friday, October 13, 2006

He's Wearing Clothes!


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.

Thursday, October 12, 2006

Update: Thursday, Oct. 12


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.


Wednesday, October 11, 2006

Update: Wednesday, October 11, 2006

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.


Tuesday, October 10, 2006

Back on C-PAP


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.


Monday, October 09, 2006

A Huge Step: On the canula!


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.


Saturday, October 07, 2006

Gaining Weight Again


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.


Wednesday, October 04, 2006

Progress Slowing a Bit

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.


Tuesday, October 03, 2006

Double his birth weight!

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.