Unexpected, Unwelcome News

The hospital called this morning to schedule a time for us to sit down and talk with the doctors about Truman's case. We thought the conference was going to be about how to address Truman's intestinal issues. It was instead about a follow-up brain sonogram that was performed yesterday.

Sometime during the last week, Truman suffered an intraventricular hemorrhage, or brain bleed. His prior results had indicated that he suffered only a grade I bleed on the left side of his brain and no bleed on the right. Now, the right ventricle is larger, or "more prominent" in medical speak. Although they cannot see any blood on the right, the size of the ventricle indicates a grade III bleed or at least pressure on his brain to that degree. The news on the left ventricle is worse still. Blood was detected in the actual brain tissue. Although it appears to be a relatively small bleed, it is classified as a grade IV. Because it is in the tissue of the brain, we know that some brain damage has occurred. What cannot be detected with the sonograms is how deep the bleed is.

We have no idea what to expect long-term. As our previous posts have indicated, brain bleeds classified as grade III or IV are considered severe. The doctor told us that because it was a small bleed, there is a chance that it could result in relatively little impact on his life. However, grade III and IV bleeds can also mean serious brain damage. We do not know what to expect at this point. We simply have to wait to know the extent of what happened to Truman's brain, perhaps years. A follow-up brain sonogram will be performed in a week. At some point after that, a MRI will be performed to see if they can determine how deep the bleeding in his brain is and therefore offer more information about what to expect in terms of his future.

As for the intestinal issues, it's been determined that Truman has sepsis, a type of blood infection. The doctors are not sure if that is part of the cause of his inability to pass meconium or perhaps a symptom. Today's bowel xrays also show that the distention in his intestine has move downward somewhat, which means that the "blockage" appears to be moving. Perhaps it is not a complete blockage after all. Right now, due to the infection and the movement in his bowel, they are holding off on any bowel surgery. The current plan is daily xrays for the next five days to monitor any additional movement of the obstruction and to make sure the infection has completely cleared before doing anything that could introduce further infection. This also means that it will be at least another 6 days before he starts receiving milk, possibly longer.

A little more than two weeks ago, we felt extreme joy when we learned that Truman's brain bleed was very minor, the kind that would resolve itself. We had been told that about 90 percent of brain bleeds occur in the first three days of life. We thought we were completely out of the woods, and were not concerned about the remaining 10 percent chance. As often as Truman has overcome the odds to this point, it now appears that the odds have caught up to him. It is very hard to be hopeful at this point.

--Ben & Kara

Update: Midday Wednesday, August 30

I just spoke with Truman's nurse. He's having a very stable morning. He's off of the blood pressure medication and the ventilator settings have been weaned some. He also is back to being very fiesty, which means that he's feeling a lot better today. A different type of xray indicates that he does NOT have a bowel perforation.

Because he's stable, we anticipate surgery could be soon before he destabilizes again. I will keep you posted to the extent I have time today. (I'm in the middle of a big client meeting today).

--Kara

Progress Report: Wednesday, August 30

Truman had a very bad day yesterday. He's back on a pretty high dosage of the blood pressure medication and his ventilator settings have had to go up quite a lot. He has also developed an infection. There is also a red spot on his abdomen that appeared tender at one point, but no longer does. There is a possibility that the red spot indicates a perforation in his bowel. Although he still does not appear to have a major bowel infection or NEC, it can no longer be completely ruled out.

The surgeon tried the dilation procedure yesterday with no success. Truman is also pale and clearly doesn't feel well. Although he was fidgety as usual on Monday night, he was non-responsive to touch at mid-day on Tuesday. Our little boy is clearly very sick.

We've been told that as soon as he is stable, surgery will likely be performed to correct the blockage in his intestine as it seems to be impacting his other body systems now. The surgery is likely to require removal of a portion of his bowel and a colostomy bag for a couple of months until he gets bigger and the bowel can be re-connected. At this point, we are just waiting for the call on when surgery will be. We expect that it could happen as early as tonight, but we just don't know. Truman has to re-stabilize before he can have another surgery.

Although this complication of a meconium plug is not that uncommon in preemies born latger in gestation than Truman, it is very uncommon for micropreemies. It's clear that the nursing staff is worried about him.

In some good news, his lungs continue to get stronger. X-rays show that more alveoli have opened, and he does a good job of breathing spontaneously when the ventilator is turned off for a few seconds to listen to his heart or abdomen.

He also has learned to open his eyes more with his eyelids rather than wrinkling his entire forehead, so he opens them larger and for longer periods now. Also, he's begun developing the classic newborn hair that sticks up off the top of his head, and he has gained a little weight and is now up to 1 lb, 8.5 ounces.

Thanks for the continued prayers,
Kara & Ben

Truman is trying

Truman apparently heard everyone talking about surgery, and responded, "Not Yet!"

After a very scary night on Saturday, Truman re-stabilized Sunday. His ventilator settings are still high, but he got his 02 levels and blood pressure under control. He's back off the blood pressure medication again. Some of the distention in his stomach appears to have lessened (His abdomen is 1 cm smaller), and he appears to be less uncomfortable than he was.

He is also making some progress in slowly but surely getting the meconium out. He had a stool with the help of an enema, one on his own, and one with the help of the surgeon. It was the first time he passed anything more than a "smear." The doctors and nurses think he's still pretty plugged up, but he appears to be making small steps.

The surgeon had his consult just after 6 p.m. yesterday. He ruled out all the scary things -- like NEC (colitis) and any "mechanical" difficulties such as a large intestine that gets smaller in a spot rather than progressively larger (and would therefore continually create blockages until surgically corrected) -- and tried a more invasive, deeper enema than the nurses have that enabled Truman to pass some more meconium. Dr. Roden (the surgeon) said it was very sticky, which means it's probably too sticky for his sluggish little bowel to pass. Dr. Roden said he's going to come daily and give this more invasive enema for the time being and said no surgery is needed at this point.

So, Truman has bought himself some time and is making a little progress.

Thanks for all the prayers,
Kara

Wake up call from the hospital

We were awakened this morning by a call from the neonatologist, Dr. Redfield. Truman began destabilizing overnight. He's had to go back on blood pressure medication and up on his ventilator. Although xrays show that his bowel distention, or "loopiness," is a little better today, they have called in the surgeon for a consult on his bowel obstruction. Dr. Redfield said there is not anything else that can be done treatment-wise, short of surgery. They were willing to give him a little more time until he showed signs that he couldn't wait. He appears to have done that overnight.

We don't know if the surgeon will be by today or tomorrow for the consult, but we expect a procedure in the next few days. That procedure could involve either inserting some of dilation tool through the anus to widen the intestines to allow the blockage to pass or an incision in the abdomen and surgical removal of the blockage. Clearly we're hoping for the dilation procedure.

The scariest part about this complication is that it was not expected. It is not nearly so routine as the heart surgery or having blood pressure troubles, and the risk of infection setting in after an abdominal surgery (should he need one) is probably greater than anything he's faced previously.

--Ben & Kara

Tummy Troubles Beginning to Look Serious

Evidently I got a little too excited about what I saw on Friday. Apparently, the meconium I saw Truman pass was the last that he passed, and it wasn't much. Also, the earlier stool I saw wasn't consistent with breast milk, it was just diluted from an enema. This means that he has yet to actually eat any food and pass it through his system.

It looks like the blockage is higher up, and is totally blocked. His bowel is also getting distended from all the air building up behind the blockage. He is getting "loopy," which means that there is enough air in his intestines to make the "loops" of intestine visible through his skin. We talked to Dr. Redfield about it today. They are going to continue giving him daily glycerin enemas for another few days in the hopes that they can prompt him to pass it on his own. If not, they may have to call in a surgeon to take a look and try to come up with options. Who would have thought with all the major complications that could have occurred with Truman that what we originally thought of as such a minor thing would be causing so much trouble. The meconium blockage is an issue that is becoming increasingly important every day.

Fortunately, he's not showing any signs of NEC (a type of very serious colitis) or any other sickness or infection that could have a serious, long-term impact. However, he is clearly uncomfortable from the distention and has been requiring more sedation these last couple of days. We've also had to begin limiting the amount of external stimulation that we can give him (once again) because of his continual discomfort. If we mess with him too much, his oxygen saturation and blood pressure can be impacted negatively.

Overall, he continues to do really well with blood pressure, O2 levels, and blood gases, but because of the inability to move his bowels, breast milk feedings have once again been stopped, and we're starting to lose the sense of joy we've had from his victories thus far, and are really beginning to worry about this next obstacle.

We'll keep you posted.

--Kara

Update: Friday, August 25

Truman tolerated his first two feeds yesterday, but didn't take the third one very well, so he is back off breastmilk at the moment. I talked to Nurse Lisa (our favorite) and his nutritionist today who said that they are going to hold until he gets his digestive tract on track. He had a small stool early this morning and then one when I changed his diaper at noon, but both were consistent with processing breast milk, meaning the meconium still hasn't passed.

But then, (I attribute all the rest of the post to my motherly pep talk), about 12:30 or so as we got to an exciting part of "The Lion, the Witch, and the Wardrobe," Truman got very angry and cried as hard as I have ever seen him. We're talking an actual quivering lower lip. He even pushed his boundaries completely out of the way with such force to unwrap even the side of them and arched his back -- his sign of being unhappy over a wet diaper. So, I checked his diaper and what did I see -- some very unfortunate, black sludge. He was passing the meconium right before my eyes! For the next hour, he continued to have intermittent periods of comfort (he was going to town on his pacifier) and periods of extreme agitation with lots of kicking and back-arching. I have faith that digestive success is at hand this afternoon. Keep your fingers crossed!

In other news, he still weighs 1 lb, 7 ounces and his O2 levels and blood gases are looking good.

--Kara

Eating & Gaining Weight

Truman has been a very good boy today. He passed another small stool this morning, so breast milk was started again at noon. They are trying a new feeding protocol to try to keep him moving (they think he still hasn't passed everything). Instead of 1CC every four hours, they are going to feed him 2CCs every six hours. The thought is that maybe a greater volume of food with more time to digest might help. We'll find out at 6 p.m. how he did.

He also has now been off his blood pressure medication (Dopamine) for more than 24 hours and is keeping his pressure up quite well. He was also on room air or within five percent or so during my whole mid-day visit.

Nurse Bev said he's developed quite a repuation in NICU for being a feisty baby and for being one who does not like a wet diaper. His kidneys work so well that they moved up to a bigger, more absorbent diaper even though it's huge on him. She said that's a really good sign that he's showing some personality at this stage.

Bev also said he has filled out some since she saw him a week ago. I've been thinking that the last couple of days, but I thought I must be crazy and just getting more used to seeing such a tiny baby. She assured me he's not quite so skinny as he was at birth. It could be because he gained an ounce and a half yesterday!! He's now up to 1 pound, 7 ounces. Hopefully, he can stay on the feeds this time and accelerate that growth.

--Kara

Progress Report: Wednesday, August 23rd

Weight: 1lb, 5.5 ounces

It's been a rough couple of days visiting Truman. He continues to be stable, his blood gasses continue to look good, and he continues to be able to stay on only about 30% oxygen. But, his blood pressure and oxygen seem to require constant tweaking now, so there are a lot more monitors going off when we are with them. Also, now that his umbilical stump has fallen off (he now has a belly button), the replacement lines in both arms and one leg mean that he has three limbs that are immobilized. He has little splints on his arms, and the line in his leg, although not splinted, seems to keep him from moving it much. It's not that these lines are a bad thing for him, it's just hard to see him where he can't move as much because we've discovered that it's his nature to do a lot of wiggling. And, with both of us back at work now, we're more tired for that last evening visit, which makes it harder as well.

We also had a brief scare on Tuesday because the first line that went in his leg didn't really work adequately to get him the nutrition that he needed, so Dr. Redfield said he would need a surgically implanted line into his chest. The surgery was supposed to be last night or this morning. But, they tried one more time in the other leg to get a regular line in. They were successful, so no more surgery for now.

Truman has also been stuck in a catch-22 with regard to feedings. In order to get off his blood pressure medication, he needs to get bigger. In order to get bigger, he needs to eat. In order to eat, it would be very helpful to be off the blood pressure medication which constricts his blood vessels (see the catch-22). A feeding was attempted on Monday, but he didn't process any of it, so they discontinued them again. Another problem he's having is that he has not stooled since birth, so they think he's a bit plugged up with some the meconium that formed in utero plus the first three days of successful feeding. However, he made some progress in that arena yesterday, but the nurses think there is still more that needs to pass. He's getting daily enemas until he can get everything moved out. At that point, he'll start feeds again. The goal for micro-preemies is to be back at their birth weight by two weeks. You may notice the weight gain above, but at least some of the weight gain is due to the splints on his arms. Dr. Redfield is concerned about his nutrition issues, so let's keep our fingers crossed that our little boy can start back on breast milk soon and start growing.

For some happy news, another miletone -- Truman has opened his eyes. Of course the next question is, "What color are they?" He's not able to open them very wide or very long, so all we can really see is that they are dark. However, considering that he is an Anglo baby with two blue-eyed parents, I'm putting my money that those baby blues are going to lighten as time goes on. His eyelashes are white-blond like his hair.

He does respond to sounds and voices by looking toward them now. Last night whenever Ben would talk to him, he would turn his eyes toward Ben. He also gets more active when Ben talks to him. When I talk to him, he tends to close his eyes and fall asleep. I guess we know which parent he finds more interesting and which one he finds more soothing.

Truman is also finished with his light therapy for jaundice. Not only is that a second milestone down this week, it means he doesn't have to wear his eye shades anymore, so he's much more interesting to look at and more interactive.

More soon,
Kara

Weekend Update: Sunday, August 20th

We just got back from the hospital and we're bringing Truman's second weekend to a conclusion. While the weekend wan't one of great progress, neither was it marked by any serious regression.

Truman now weighs only 1 lb, 3.5 oz, which is just under his birth weight of 1 lb, 4 oz. We've been told by both the doctors and nurses that Truman's weight will continue to fluctuate slightly around his original birth weight until he is able to start eating breast milk regularly. As you may know, Truman had his first feedings of breast milk last week, but those had to be discontinued Friday morning because his system wasn't quite ready to start processing that kind of food constantly. After all, our stomachs aren't really supposed to be used until we're born at 9 months, so because he came early we're having to train his tummy to accept and process food. They call this "Priming the gut." We've been told to expect numerous starts and stops of the feedings before he is able to eat all the time. In the meantime, Truman is still being sustained through the nutrient drip line running into his belly button.

Speaking of his belly button, the arterial line which monitors blood pressure and and the other line which is used to introduce fluids and nutrients have both started to have some problems. Because of this, it has been difficult to get accurate blood pressure readings for the last two days. They have little, tiny blood pressure cuffs which can be used, but from what we saw, they were extremely inaccurate on a child of Truman's size. To correct this issue, the nurse practitioner put a new arterial line into his left arm this evening. They gave him a little sedation and morphine for the pain, but when they stuck his arm, he turned purple and rigid, and his mouth froze in a grimace of pain. If his vocal cords had not been immobilized from the breathing and feeding tubes running down his throat, he'd definitely have been letting the entire floor know how he felt about the procedure. After they got the new line in place, a small splint was built over his left arm from the elbow to the first knuckle of his fingers to make sure that he could not interfere with its proper operation. Finally, once the splint was in place, the nurse slowly removed the old, malfunctioning arterial line from his belly button. The fluids/nutrients line to his belly button is still working for now, but it will probably have to be removed in the next couple of days because his belly button stump is going to come out soon, and they will probably move the line to one of his legs at that time.

The entire process of removing and replacing his arterial line probably took about 12 to 15 minutes, but Truman was only upset with about the first 7 or 8 minutes of that. After the process was complete we were able to talk to him softly and place our hands on him to calm him down, and he fell asleep for a little while shortly thereafter.

Each of the last two nights have been marked by us being able to visit Truman without the lid on his isolette for an extended period of time. This really allows us to feel more connected to him as we are not separated by plexiglass and allows him to hear our voices more easily. The reason that it's possible for us to do this now is because he is regulating his temperature so well that he doesn't need as much assistance from the heater in the isolette. We've also been invited to do a little more in his day-to-day routine, such as helping to change his bed linens. Tonight Kara got her first chance to pick Truman up while the nurse and I changed out the linens in his isolette. She did this by sliding her hands beneath his little bed and lifting the entire thing, so it's not the same kind of holding that you normally think of a mother doing with her child. However, it was still nice for her to get an idea of how much he weighs. We placed Truman's name-embroidered blue baby blanket from his Aunt Amy among his linens tonight, now that we can start bringing a few of the receiving blankets that we have for him to the NICU. It's really quite cute.

Something else we've enjoyed over the last two nights is not having to hunch over to speak through the arm holes in the isolette in order to let Truman hear our voices. Since speaking to him is a lot less work now, we've been reading to him for more than an hour each night. Last night it was Dr. Suess readers, fairy tales and some sung mother goose rhymes, and tonight it was a few chapters from The Lion, the Witch, and the Wardrobe. Truman seems to respond well to our voices, either by becoming active and interested, or by calming down to the point of falling asleep. The sung nursery rhymes really seem to put him to sleep well at this point.

Truman remains on the high-speed oscillating ventilator at this point, but the nurses have been gradually turning down the pressure that the machine uses to push in the air. This is a good thing because the lower the pressure, the more gentle the machine is and the less risk of damage to his lung tissue (some of which will probably happen regardless). Despite the fact that his blood pressure readings and blood oxygenation monitor have been bouncing around erratically for half the weekend, Truman's blood gases continue to look good. We expect that some of the erratic behavior of his blood pressure will now be corrected with the replacement of his arterial line. Truman also remains under the bili light treatment. He doesn't like the constant spotlight, but it is still needed to help him break down a compound resulting from his jaundice because his liver can't yet do the job by itself. However, his skin is showing good progress and is beginning to look a lot better. The Aquaphor ointment treatment that he has been receiving over most of the last couple of weeks has been discontinued, and they'll be moving to a simple vitamin-E cream before long. He's not eating breast milk at the moment, but we hope to see him give it another try in the next couple of days.

Overall, Truman is remaining fairly steady right now. There's still a long way to go, but given enough time I'm confident he'll make good progress. For now, we're playing a waiting game until he is ready to start working on the next big hurdles is his future: eating and processing food regularly and lung development.

As always, thank you everyone for your encouragement, prayers, and support. We'll keep you all posted.

--Ben

Progress Report: Friday, August 18

Truman was much more stable today with his oxygen and blood pressure. He had some residual breast milk in his tummy today so feeds were stopped for Friday to give him a break and time to pass through everything that was already in his system. Feeds were supposed to start again on Saturday morning. We don't have any results yet on Thursday's blood cultures.

He was sleeping on his tummy for part of today. Although it was hard to get him into that position, he seemed to really like it once he was there. (He likes to squirm, particularly when being repositioned.) I got a chance to see more of his hair. It looks like it's probably a bit wavy with the classic Altenbaumer cowlick on the front. Although I think his hair is blond, Ben thinks it might be strawberry blond. I guess we'll have to wait and see when he's not so pink.

At one point today while I had my hand on his back, he breathed nice, shallow breaths for probably a minute. So, he's learning! He also had his first pacifier today. He likes to suck on his tubes, but Nurse Lisa said he needs to learn to suck without thrusting his tongue. So, she held a little pacifier in place for five or ten minutes. He tried to suck for a while and seemed to like it, but kept pushing it out.

Friday was also the first day that we read to him. He went through several story books. Ben thinks he responds physically to my voice now.


--Kara

Progress Report: Thursday, Aug. 17

Weight: 1 lb, 5 oz

It was a fairly uneventful day. Truman is having more trouble maintaining his oxygen levels and blood pressure. Lots of adjustments had to be made to his ventilator, and he had to go back on blood pressure medication.

The minimal stimulation order is off. So, we can touch Truman more and are starting to record stories for him on the little tape player were given. That way he will hear more of our voices and get to know them better.

He also contimues to tolerate feedings well. They have been increased from one CC every six hours to one every four hours. One feeding was skipped when there was some residual milk left in his stomach, but otherwise he has tolerated them well.

A follow-up neural ultrasound was performed because another radiologist thought he saw something. We had a few tense hours waiting on that, but the second ultrasound confirmed the first one -- a grade I bleed. Another scan is scheduled for Monday.

There were a couple of spots on his skin that had some pus in them that were drained on Thursday. They were sent to the lab for cultures, and he was given antibiotics as a precautionary measure in case they were a skin infection.

Aunt Amy came to visit Truman. She was surprised to see he had a full set of fingernails and toenails.

Progress Report: Wednesday, Aug. 16

Truman had another good day. He hit a milestone today -- his first breastmilk. He was given 1 CC (about a fifth of a teaspoon) at noon. When they suctioned his stomach at 5 p.m., it was all gone, which meant his stomach was able to process it all. So, he got another CC at 5 p.m. They will continue to give him the milk in these small increments as long as he will tolerate it. This is a big step because he can't really grow until he can process breast milk.

He also did something very cute today that I was lucky enough to witness. He sucked his thumb. I'm not quite sure whether he got the whole thing in there or was just sucking on his knuckle, but he was quite vigorous about whichever portion he got.

His oxygen levels were pretty erratic today. His night nurse tonight said that becomes more common as the preemies get older and suffer a little more injury from the ventilator. Although their levels bounce around a lot, they can generally get themselves back on track in a few minutes without adjustments to their ventilators. I asked his doctor today about the long-term impact on his lungs from being born so early. He said that Truman could go home with some sort of oxygen or monitor, but that the most likely long-term effect is a higher risk of asthma.

Ben went back to work today. He said it was hard to concentrate, but it's time to return to some semblance of a normal life or at least our new definition of a normal life. He was able to alter his work schedule to 9 a.m. to 5:30 so that it's easier to make it home for dinner and an evening visit with Truman.

I plan to return to work on Monday and spend a couple of hours mid-day at the hospital as well as the evening visit with Ben. I know it will be hard not to spend more time with Truman, but like Ben, I also have to get back to a normal life until Truman comes home and he can be with Mom or Dad all the time.

As always, we appreciate your continued support and prayers,
Kara

Progress Report: Tuesday, August 15th

Here are a few pictures of Truman for all of you who have been asking.


Truman really likes to stick his arms and legs out all over the place. He doesn't seem to gravitate to a completely fetal positiion most of the time like you might expect him to. Much of the time when we are with him he is fairly active, moving about as best he can.


Here you can see me (Ben) changing Truman's diaper. Anything which stimulates him (including physical contact) is still supposed to be very minimal, but some things are necessary, and Kara and I like to be there to do what we can. As you can see from the size of my hands in comparison to him, he is still very tiny.


Most of the time Truman is laying down inside his warm incubator. We can reach him through covered openings in the side. The NICU nurses do their best to keep things cheerful, and you can see the name sign they made for Truman and taped onto his bed.


Truman continues to make good progress in the Baylor NICU. A day after his heart surgery, he is recovering well. His blood pressure has come up to a number which the doctors are more comfortable with, and his blood gasses have been very good for several days now. He has a scar under his left arm that runs from his chest around to his back, but it is healing well and should barely be noticeable by the time he is a toddler. His chest x-rays are improved and show less fluid in his developing lungs, and his blood should now be circulating down through his lungs and stomach (as well as several other organs, I'm sure) much more efficiently.

We are hoping that Truman will be able to start eating mother's milk in the next 5 to 7 days now that his bloodflow has been corrected. As it is now, Truman is being sustained through a nutrient drip line which supplies him amino acids and proteins, but by themselves those are not enough to really help him grow and get better. The day that he is able to start getting real food will be a big day for all of us.

The minimum-stimulation order is still in effect right now, which means that we have to limit how much we touch and talk to Truman. The reason for this is because his brain is still trying to learn how to govern his autonomic functions, such as how to regulate his blood pressure and blood gasses, and how to tell his kidneys what they need to be filtering and what he needs to be keeping. Anything which interferes with that development could be a hindrance, so in the interest of him making progress, we are lmiting ourselves to how much we interact with him. This order has been in effect since he was born, and is re-evaluated once every 96 hours (4 days). I suspect that Truman may continue under this order for another week or so.

Speaking of his kidneys, they appear to be functioning pretty well from my point of view. I have already had the pleasure of having my hands peed all over; the first of many such pleasures, I'm sure. Kara and I also watched him fight the hiccups for about 12 minutes this evening.

Truman is still on the high-speed oscillating ventilator, and his doctor would like to keep him on it as long as possible because it is the most gentle option available, and thus the least likely to damage his gradually maturing lung tissues. In all likelihood, he will continue to be on some form of ventilation for the next three months. This is going to be a long road.

Overall, Truman is continuing to surpass everyone's expectations, and we hope that he continues that trend until it is finally time to go home, which could be up to three weeks either side of December 5th.

--Ben

Wonderful News!

Just before leaving the hospital late this afternoon, the nurse practitioner came in with the results from Truman's neural scan this morning. He has a Grade 1 bleed in the left ventricle, which is small enough that it should have little to no ramifications and should resolve itself over time. The right ventricle does not have any bleed at all!

This is the best news that we could have possibly hoped for. Now, Truman should have a chance to be a normal little boy someday (assuming that his parents don't screw him up too much).

Every stage of this NICU process will be bringing its own challenges, but today Truman managed to clear a couple of really big hurdles. Today has been a very good day.

Thank you, everyone, for your continued support.

--Ben

More on Truman's Surgery

We are finally awake after trying to nap a little this afternoon. We had to be at the hospital very, very early to sign consent forms, meet with Truman's surgeon, and wait during the surgery. He was sleeping very peacefully when we left late this morning and was expected to be very asleep most of the day due to the anesthesthia from the surgery. So, we did what people recommended and slept when our baby slept.

The surgery went very well. Apparently, the ductus was quite large, so they expect the procedure to make a big difference in Truman's health. In fact, within an hour of surgery, his chest x-rays looked better and his blood pressure had risen. They had given him some doses of hydrocortizone just before the surgery just in case he had trouble keeping his blood pressure up. But he did so well afterward that the nurse already decided to hold the remaining doses scheduled for today.

The formal neural sonogram was also performed this morning while we were there, but we have not heard results. We do not expect results until tonight or early tomorrow. This will probably be our biggest challenge so far -- even bigger than the surgery depending on the results.

We are headed back to the hospital soon to see if Truman has waked from the anesthestia and returned to our usual very feisty, fidgety boy.

On a funny note, because yesterday was so tough, the nurses wanted to lighten things up a bit. While we were gone for a rest yesterday afternoon, they switched out his eye mask and drew one with little longhorns over his eyes and the phrase "Hook' em" on it. They also did his footprints while we were there. It turns out he has one foot from his mom -- flatfooted as can be -- and one very arched foot from his dad. His footprint is about the size of the first two knuckles of my first finger. Despite being only a foot tall, he has very large hands and feet and long fingers and toes.


--Kara

Truman is Out of Surgery

Truman's surgery is over, and it went very well.

The full brain sonogram will likely be performed this morning while he is still sedated.

Kara and Ben will write later with more information.

--Amy

Update on Truman's Surgery

Truman's heart surgery will be performed at 6 a.m. on Monday, August 14. The entire procedure, including set-up, takes about an hour. We've been told to expect a couple of rough days after the surgery as Truman will likely go back on blood pressure medication and will be a very sick little boy for a while.

This morning (Sunday) while a follow-up echo was being performed on Truman's heart, his neonatologist asked to see a sonogram of his head as well. We received preliminary results this afternoon. It appears that Truman has suffered a brain bleed that is somewhere between grade II or grade III. Sometimes these bleeds resolve themselves and result in little to no long-term effects. Others result in long-term cognitive delays ranging from simple learning disabilities to mental retardation. Cerebral palsy is also a possibility. A full sonogram of his brain will be performed tomorrow. The official medical term for the condition is intraventricular hemorrhage, or IVH. Fortunately, despite the bleed, he has shown no signs of severe brain trauma.

We also learned today that Truman had a high white blood count in today's blood labs, which could be a sign of a infection beginning. A course of antibiotics was started to help him get over any infection.

Needless to say, today has been a very rough day. We were told to expect some bad days and some setbacks over these first few weeks, but it hasn't made it any easier to deal with.

But not all news today was bad news. We learned that he gained two ounces yesterday and that his blood gases and blood pressure continue to look good. He also remains very stable and physically alert and active.

Thank you all for your continued support, meals, kind words, and prayers. We appreciate them all.

--Kara

An Explanation of PDA

PDA - Patent Ductus Arteriosus

While in the womb, a baby receives oxygen from his mother through the placenta. Since there is no need for the blood to travel to the lungs to pick up oxygen, the blood bypasses the lungs, following the path of a blood vessel called the ductus arteriosus (sometimes just called the ductus). In the first day after a baby's birth, the ductus closes on its own, allowing blood to flow into the lungs to pick up oxygen, then back to the heart and out to the rest of the body.

In premature infants, the ductus tends to stay open and some of the blood continues to bypass the lungs, circulating out to the body without picking up vital oxygen. This is called a patent (open) ductus arteriosus, or PDA. This is a common problem in very young preemies, occurring in about 45% of infants under 3 lbs, 14 oz, and almost 80% of infants under 2lbs, 3 oz. Truman's birth weight was only one pound, four ounces.

For the first few days, a preemie with a PDA will probably need a little more oxygen than usual (which he would probably need even without the PDA, because his lungs are immature), but the PDA doesn't affect the function of the heart and lungs significantly. However, over the next few days or weeks, this extra blood flow can put a strain on the heart and lungs. If it is allowed to continue, the heart can tire out, resulting in congestive heart failure. A PDA can also lead to pulmonary edema, in which fluid from the blood leaks into the tissues of the lungs, making it more difficult for the baby to breathe.

The severity of the problems caused by a PDA depends on how much blood is flowing through it. Small PDAs cause only minor problems and may close eventually on their own. A large PDA will probably remain open and need treatment before it causes significant problems.


How PDA is Treated

If the doctors suspect a baby has a PDA, their suspicions can be confirmed with an ultrasound of the heart, called an echocardiogram (or echo for short). This test is painless, and is usually done while the infant is resting.

Small PDAs are easily treated with an aspirin-like medication called indomethacin. This will help the ductus to close after one or more doses. The doctors might also reduce the baby's fluid intake and give him a diuretic to get rid of extra fluid. This will reduce the amount of work done by the heart and prevent heart failure.

If the indomethacin does not work, if the baby is too young to be able to be prescribed this medication, or if the medication cannot be used because of the baby's other medical problems, then the ductus may need to be closed surgically. The surgeon will tie off or clamp shut the ductus through a small incision in the baby's chest, a procedure that takes about an hour. Although surgery can be scary for parents to contemplate, be assured that the PDA surgery is routine and very safe. Once the PDA is fixed, there are no long-term effects to worry about.

(Above explanation is quoted from The Premature Baby Book of the Sears Parenting Library, by Sears, Sears, Sears, & Sears).


It has already been determined that Truman is going to need to have the surgical procedure performed on him, but we don't yet know exactly when that will be. On Sunday, August 13th he is supposed to receive a second echo to confirm the first one he had, prior to the scheduling of the surgery. We will keep you all up to date here.

--Ben

Progress Report: Saturday, August 12th

We are very encouraged by the way Truman is continuing to hold his own.

The "Honeymoon" phase ended overnight back on Wednesday, and Truman had some trouble maintaining his blood gases and blood pressure at that time. At that time they had to turn up both his oxygen mixture and the force which the respirator uses, and they had to increase his blood pressure medication as well. However, by the time Thursday midmorning had come, Truman had stabilized and he has been doing surprisingly well since then. Dr. Shoemaker, Truman's neonatologist, even confided to Kara's obstetrician that "Truman is doing spookily well."

Truman has now been completely weaned from the blood pressure medication that he was previously being given, and his blood gasses have been coming back very well for two days now. Occasionally he has to be given a slightly higher oxygen mixture, but I'd guess that he's on actual room air (about 21% oxygen) about 75% of the time now. He is still using the high frequency ventilator, which provides him with something like 200 tiny, shallow breaths per minute, and which causes his chest to appear to vibrate. However, he is doing his best to breathe "above the machine," meaning that he is sometimes able to take longer, deeper breaths on his own, which is a sign of progress.

Yesterday, Friday, August 11th, Truman was given an echocardiogram (or simply "echo") which is designed to look at his heart and valves. This was prompted by the discovery of a heart murmur earlier in the week. They were checking specifically for the presence of a PDA, which occurs in approximately 80% of preemies under a birth weight of 2 lbs, 4 oz. A PDA is a condition where a valve that causes blood to bypass the lungs in utero remains open after birth. This valve is supposed to close on its own in full-term babies, but it's a very common problem for micro-preemies to have. The PDA is going to have to be closed by a surgical procedure in the next two or three days. We don't know exactly when the surgery will be scheduled yet. They will have to make an incision along Truman's side, go in between the ribs, and insert a clamp across this valve. We have been assured that this is a standard operation for these young kids and that it has a very high success rate, but it's still a scary prospect to know that your week-old preemie is going to have to go under the knife. We'll try to post that actual time and day of the surgery on this blog once we find out when it's going to be. We've also been advised that most preemies who undergo this procedure usually become sick afterwards, but Truman wouldn't be recommended for this procedure unless he were stable enough for it.

Truman is also scheduled for a sonogram on Monday of his brain for the first time since being born. We are hoping that there is no sign of any damage, but we have been told to expect to see some bleeding. We will be hoping and praying for the best possible result.

Clearly, week two is going to be just about as difficult as week one was in its own ways. We will do our best to keep everyone informed through this blog, and we appreciate all of your offers of help, well-wishes, and prayers.

In the meantime though, Truman is still doing as well as could be hoped for for a boy of his gestational age. We just hope that he keeps on fighting and making progress.

-Ben

Truman's Name

Truman Borden


Truman - From Old English, literally "True Man," meaning faithful or honest.


Borden - Also from Old English, meaning "From the Boar's Den," which sounds a little ferocious, but the name doesn't bring up that image as much these days as much as that of a cow and/or brand of dairy products. What is really more relevant is that it is a fourth-generation name. Truman's great-granddad was Oscar Borden, his grandfather is Davis Borden, and his father is Benjamin Borden.


We like the name because it's uncommon, easily pronouncable, somewhat distinguished, and pretty much nickname-proof. And it just seems to fit him. Lots of people say that it's a big name for such a little boy, but we expect that he'll be growing into it soon.

--Ben

Truman's Birth

Well, it has been a difficult few days, so rather than repeating this story over and over again to each of you in person, I think it will be easier to simply write the story down here. I hope this will make it easier to concentrate on the present and on Truman's progress rather than dwelling on the difficulty of his arrival.


A word of warning: You may not find this an easy read, but this is exactly what I (Ben) experienced. This was hard to write, but I feel it's accurate and honest.


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Monday, July 24th

Kara and the Baby had their week 21 sonogram, and we finally got to find out the gender: it's a boy! This is a wonderful day, and the appointment concludes with a consultation with Kara's obstetrician who is encouraged by everything that she had seen to that point. Promises could not be made of course, because there are a number of problems that are undetectable in utero, but so far as anyone could tell, we are all on our way to having a perfectly healthy and normal pregnancy.


Friday, August 4th

After an evening of home remodeling, including lots of painting and getting up and down off of the floor, Kara has her first spotting of the entire pregnancy. It happens only once and it's brown, which is an indication of older blood, and is not usually something to be concerned about. Kara checks her reference books and messageboards, which all reassure us that such spotting is often common among pregnant women, and that so long as it is not accompanied by cramping that there is nothing to really worry about.


Saturday, August 5th

Kara spots once again (only once), but it is brown and there is no cramping of any kind. We attribute it to all of the extra exertion of the last two days from working on the house.


Sunday, August 6th

Once again, Kara has a brown spot which is not accompanied by any cramping. We wonder if this can really be being caused by the extra physical exertion of the previous few days. I try to make Kara sit on the couch and watch her favorite TV shows rather than let her be her normal, high-energy, always-busy self.


Monday, August 7th

Morning - After getting up, Kara find yet another brown spot. There's still no cramping, but we're not really buying the theory that this is fairly routine for pregnant women anymore. Kara calls her obstetrician who tells us that in all likelihood, she might have picked up a yeast infection, but to come in for an evaluation on Wednesday, August 9th just in case.

10:00pm - About an hour and a half after some slightly spicy noodles from Pei Wei, Kara starts to experience gastrointestinal pain accompanied by ferocious flatulence. This pain gradually intensifies until midnight, when I run out to the nearest drugstore to pick up some Pepto-Bismol and some Gas-X. After I get back home, Kara is still in pain, and takes the medicine. After about 30 minutes, it appears that the medicine is going to have little or no effect. We're starting to get frightened. We look in her pregnancy reference books for information regarding GI pain and excessive gas, and cannot find anything other than advice to stay away from certain kinds of foods (possibly implicating the noodles from dinner), and that this kind of pain and bloating is not all that uncommon among pregnant women. Telling us to watch what she eats wasn't particularly useful at that time, I must say. Still, because of the amount of gas being constantly expelled and because of where the cramping seemed to be originating, we were led to believe that this was still some kind of gastrointestinal problem. We could not find anything in our books that indicated this could be a symptom of anything else.


Tuesday, August 8th

2:00am - Kara encourages me to go to bed, since I am going to have to go to work in the morning. She lies down next to me, but as I gradually fall asleep, the pain keeps her awake, and she eventually heads to the bathroom around 3am.

4:00am - After an hour of sitting in the dark in the bathroom feeling nauseous and incontinent, something tells Kara that she'd better switch on the light. There is red blood in the toilet; a sign of real trouble. She immediately dials the hospital which orders her to come in to the emergency room, and she wakes me up.

4:09am - The on-call obstetrician from Kara's doctors' office receives the call that we are on our way to Baylor hospital.

4:12am - Terrified, Kara and I are both dressed and we head to my car. The route we take is primarily down Skillman. After about one minute into the trip, I realize that there's no time to wait at stop lights, so I switch on the hazards and take the car up to nearly 70mph in spots, only slowing down enough at intersections to make sure that it is safe to cross.

4:15am - During the car trip, Kara's pain continues to intensify, which is exacerbated by our mental states. We know that there is a problem and that our little boy could be at grave risk. We worry about whatever may be happening, and tears start to flow.

4:20am - About 2 minutes away from arrival at the emergency room, Kara's water breaks. For the first time, we both realize that she is in labor. How can this be happening? We're only just about to enter week 23!

4:23am - We arrive at the Baylor women and children emergency room driveway (after driving past it once because we were looking for a sign that said "Labor and Delivery" which we'd been told to look for). I leave Kara in the car, sprinting inside, only to be greeted by locked doors and no one to talk to. After what is probably only 20 seconds (but seems like an eternity), a voice comes over the intercom telling me to step away from the doors. When I do, they are unlocked. I run inside and speak (as well as I can manage) to the people at the reception desk, who immediately bring out a wheelchair to the car where Kara is waiting.

4:25am - As Kara is changing clothes and being positioned onto the emergency room delivery table, I call her parents as well as my own to let them know that something has gone terribly wrong. Kara's parents, only 80 miles east, immediately get ready to head to Dallas. My parents, 400 miles to the west, are too far to come immediately, so they take to prayer.

4:30am - While waiting for the resident obstetrician to come down to the emergency room, the team of nurses already there does a sonogram on Kara's uterus, but they cannot find our boy's hearbeat. Sheer panic begins to set in on me. However, after a couple of minutes they are able to find it... in the birth canal.

4:34am - The resident obstetrician arrives and lifts up Kara's hospital gown. I see our boy's head already crowning. Despite our protests, the doctor tells us "You're having this baby now." She instructs Kara not to push because we need time for the neonatologist and his NICU nurses to arrive on the scene. I call both sets of parents again, to inform them that birth is imminent.

4:36am - The neonatologist and the NICU nurses arrive. Kara is given the instruction to push.

4:38am - Our boy is born to the world, 17 weeks early. He does not cry, and is immediately taken by the NICU team. After about two minutes they take him from the room. He comes out completely purple and unmoving, and I am crushed with despair, thinking that he is stillborn.

4:43am - Dr. Craig Schoumaker, the neonatologist, returns to our room to let us know that our boy is alive! A bizarre sense of relief and dread sweeps over me at the same time. At this point, we have no idea what sort of condition he is in. We are told that he currently has a good, strong heartbeat and that he is breathing on the ventilator, but that is all we know, and all we will know for some time. We are told that a child born at his age stands a 50/50 chance of survival.

4:55am - The on-call obstetrician from Kara's Ob/Gyn office arrives, too late for the delivery but quickly enough to offer us advice, answer questions, and to try to console us.

5:10am - Kara has been cleaned up a bit and I've packed our things. We are getting ready to head up to the hospital room when we are invited to come see our new, tiny little boy. As we look at him for the very first time, the emotional roller coaster we had just been on contributed to a temporary, surreal sense that he wasn't really ours; this poor, tiny little boy with tubes coming out of his stomach and his mouth, eyes still fused shut, and practically small enough to fit in the palms of my hands. It is really hard seeing him like this.

5:20am - Kara and I head back down to her hospital room, where we grieve together until her parents arrive around 5:40. At this point in time, it is very difficult to find any joy in our hearts. Of course we love our son, but we want him to begin his life being able to be touched, spoken to, interacted with, and comforted. None of those things are an immediate possibility. It just seems so unfair to make him start out this way.


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Wow, that was hard to write. But trust me, it's easier than telling it over and over again.

Since the day of Truman's birth, Kara and I have both learned a lot, and despite the extreme emotional difficulty of this situation, we have come to trust the good and gifted physicians and caregivers at Baylor hospital, and we have come to expectantly hope that our son will come through this ordeal with surprising success.

In conversations over the past week with Kara's Obstetrician and the neonatologist, our view of Truman's early delivery has been changed. The doctors believe that Kara had a condition called "Incompetent Cervix," where her body was simply unable to hold the weight of the baby, placenta, and amniotic sac. Most women who have this condition lose at least one pregnancy before the condition is identified, and sometimes more.

When a woman has Incompetent Cervix, as the weight that is being carried presses down on the cervix it starts to give way, and the mother begins to dilate slightly. When this happens, the amniotic sac becomes exposed to the vagina, which can cause it to become infected. Once the amniotic sac is infected, it becomes weak, and coupled with the increasing dilation of the mother and the weight continuing to press down, things eventually give way and the water breaks, whereupon birth cannot be avoided. For that matter, once the dilation begins and a small infection begins, it is too late to do anything about it, and the birth will soon take place, unavoidably. This condition is extremely hard to detect in women with no risk factor, especially when it is their first pregnancy. Kara was doing everything in her power to give our boy the best chance possible, and was told that there was nothing else that she could have done to prevent what happened.

When most women lose their pregnancies due to Incompetent Cervix, it tends to happen before week 20. Kara and Truman made it all the way to week 23, which gave him just enough time to develop to have a real, fighting chance at survival. When you couple that with the fact the we got to the hospital just barely in time and that he is now being cared for in one of the best Neonatal Intensive Care Units in the state, you can see why we have come to feel like Truman is here for a reason.

We all continue to appreciate the help, warm-wishes, and prayers. Thank you, everyone.

Truman's First Thursday

Truman had a very good day today. He managed to get completely off of blood pressure medication. Sometimes his pressure still climbed a little high when he would get fidgety, but he was fighting low pressure before. One time while his mom was with him, his blood pressure got a little high, but the nursing staff asked Kara to hold his head and feet to soothe him. That did just the trick for our little guy. One of the good things about getting off the blood pressure medication is that he may be able to start trying out a little breast milk in a feeding tube before too long.

He spent most of the day with only room air on his ventilator, but he gradually had to have a little more oxygen by nightfall. Part of that was due to all the things that get done to him each day at 8 p.m., like being weighed, having tubes changed, and tape pulled off and reapplied. Part is due to something called a PDA, which is a problem for all preemies, particularly micropreemies like him. It means that a small valve between his heart and lungs has not closed. He will have a scan Friday morning to see how the duct looks and to decide what the treatment game plan is. If it is very small, he will most likely be able to handle it without treatment. If it is small, they will try treatment with a drug that is supposed to cause the hole to close. If it's bigger, he will have a minor surgical procedure done sometime over the next few weeks where a clamp will be inserted to close the duct. Although the PDA will probably require some treatment, it is something that all preemies (and some full term babies) face.

Truman gained weight today. He is now 1 lb, 6 oz. And, he processed a lot of flood today (he had three diaper changes in one hour), so that's probably real weight gain rather than just fluid retention.

So far, so good. More to come tomorrow.

Welcome to Truman's blog page

I'm setting this up for Kara and Ben—Amy (Kara's Sister)

Truman Borden was born Tuesday, August, 8, 2006 at 4:38 a.m. (I think that time is right.) at 23 weeks. He was due Dec. 5. He weighed 1 lb. 4 oz. For a micro-preemie, he's doing great so far. He's on a ventilator, of course, and has a catheter in his belly-button giving him food and medications, but that's about it. He doesn't have any major complications at this point other than being born almost 4 months too early. He just came off of his blood pressure medication because he's regulating well on his own. He can't be handled much at this point, but Kara and Ben are getting to spend a lot of time with him. He will have a series of tests and scans on Monday, Aug. 14, which will give a better picture of his health, but so far, so good.

Kara is okay, all things considered. She has no medical complications. She's just very tired. She's being discharged today and going home this evening some time where she hopes to get some rest.

More news and pictures will come later. Kara and Ben aren't checking their e-mail right now. Feel free to e-mail me if you have any questions. (There's a link on my name above.) I'll try to get back with you if I know the answer.