Teeny Tiny Truman

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

Thursday, November 30, 2006

Discharge Prediction!!!

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

Wednesday, November 29, 2006

Day 114

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

Tuesday, November 28, 2006

Day 113

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

Monday, November 27, 2006

Finally Extubated and Eating

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

Thursday, November 23, 2006

Continuing to Recover

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

Tuesday, November 21, 2006

All Put Back Together

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

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

Monday, November 20, 2006

Still growing!

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

Friday, November 17, 2006

Surgery Has Been Set

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

Thursday, November 16, 2006

Day 101

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

Wednesday, November 15, 2006

Day 100

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

Tuesday, November 14, 2006

Update: Tuesday, Nov. 14

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.

Monday, November 13, 2006

Update: Monday, Nov. 13

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

Friday, November 10, 2006

Time for Toys

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

Thursday, November 09, 2006

No more feeding tubes!

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

Wednesday, November 08, 2006

Three Months Old!

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

Tuesday, November 07, 2006

Weight Loss

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

Monday, November 06, 2006

Four Pounds!

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

Thursday, November 02, 2006

Moving Day!

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

Wednesday, November 01, 2006

Update: Wednesday, Nov. 1

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