A breath of fresh air

This post is a little bit late. Sorry for keeping any of you in suspense. Truman was able to get off the respirator yesterday... Finally! It was a major "hurry up and wait" task. I was up at the hospital at 10 am and kept getting told that it would happen at any time. Well, it finally did at 5pm. It was a very long day, but well worth the wait. I was a little dissapointed that I didn't hear him cry after, not that he wasn't trying, but his throat was a bit sore and he will be quite hoarse for a few days. Even though it is progress, it does take a toll on his little body. Luckily for us we were finally able to hold him again which is good medicine for all of us.

~Kaiti

There's always tomorrow

Once again we got the word from the doc's that Truman may be able to come off the respirator tomorrow. We are really hoping that this one takes. Truman is doing well today, however, despite his parent's angst. He was wide awake this afternoon, squirming around and giving us his patented scowl. We love it when he does that. You can tell that he is tired of the breathing tube, but he is being very patient and showing the doctors and nurses that he can do a good job breathing on his own. Truman passed his spontaneous trial today, which is a test to see how well he will do when the respirator is turned off completely. He did fine. They are planning on doing another test tonight and tomorrow morning and if all goes well there shouldn't be any reason why he can't get that darn tube out. It will be so nice to see his little smile again.
Truman has also progressed to his feeding goal of 16 cc's per hour (about 1/2 ounce per hour). And he is pooping and peeing fantastically. He really has come along way since his surgery one week ago. Man, it feels like it's been months. I really do think this place ages you. I am so appreciative of the care he is getting here, but I will not miss this place one bit.

Thanks to everyone again for the love and prayers!

Nurses in Training

Truman is now 3 weeks old. Time goes by in a blurr. No really it is pretty much a blurr - the days blend together, you can't really see straight sometimes due to lack of sleep or tears in your eyes, but time waits for no one.

We were a little disappointed that they couldn't take the breathing tube out yesterday, but they are lowering the settings to help Truman remember to breathe on his own. It is a fine balance because the pain medication he is on suppresses the drive to breathe. He did come off one of his blood pressure medications because his blood pressure dropped too low, we will see if he has to go back on it. 

He really is remarkable how well he puts up with everything and the nurses all love him. they were explaining to us that he may be on some medications when we get to take him home and they will show us how to give those if he needs them. We were kind of overwhelmed by all the things they said we may or may not have to do when he gets home. As far as when he gets to come home they still haven't given us a time frame. It is more just when he gets off some of the stuff he needs right now and passes some tests. A few of the things they said we will need to know are - Child CPR and Choking Rescues, administering oral medication, possibly - administering injection medication (like an insulin type shot), possibly putting in a feeding tube. Hopefully we won't have to be trained on all those things. When they tell you all this stuff at once it is daunting to say the least, but when you think about it they will train you on it over days - hopefully not all at once.

So he is just recovering well. Day by day his swelling goes down and he looks more like himself and he is up to 9 cc's of milk an hour. Hopefully today they can take out his last chest drain and get him off the respirator.

Totally Tubular Dude!

Truman continues to progress on the road to recovery. When we visited him to day he was awake the whole time. We kept telling him to go to sleep, but like most kids his age he wouldn't listen. The doctors were able to take two of his drainage tubes out of his chest today. The ones that sat on each side of his lungs. So that is two less tubes to worry about. They also removed his catheter and he is going through diapers like a mad man. Hopefully tomorrow they will be able to remove that pesky ventilator. Truman looks like he is fed up with it. He is moving around well, which they like to see and is starting to rely less on the ventilator to breathe.

If you ever wondered if you could cry while on a ventilator you can. You just don't make any sound. It is really not easy to watch him cry while he has that down his throat, but we are very hopeful he won't have to deal with the breathing tube much longer.

He just watched us a lot and I think he was glad to see us. Thanks for everyone's thoughts, prayers and comments. We love to read the comments.

Once he gets that ventilator off, we should be able to put up some more pictures.

Case Closed, Got Milk?

What day is it now? This whole thing is really starting to blur together.

The doctors were able to close Truman's chest yesterday which made us feel so much better. He now just has a small dressing on the front of his chest. Since then he has just been doing great. I am sure he is donig better than we are most of the time. It is really hard to see the little guy with so many IV's and the ventilator doing the breathing. Truman is still pretty puffy in the face and abodomen so he doesn't quite look like himself again yet, but he is still cute. I think I counted the other day that he had 11 IV machines giving him various drugs and nutrition. One of them now is Milk. YAY! They have started his feeding and they always start out really slow just to make sure everything is working the way it should and you don't get any pluggage. This is all done through a feeding tube that goes through his stomach and right into his small intestine. This prevents any spit up which you wouldn't want to do while on a ventilator. He started at 1cc an hour which is a drop, but has now gone up to 2 cc. Mmmm, milk.

He opens his eyes everynow and then, but mostly just rolls them around. His pain medication I am sure has him very far on the loopy side. If it were up to Kaiti and me, he would just sleep until he was all better. We certainly don't want him to be uncomfortable or have any pain. I have no idea how the nurses know if he is in pain or not. I guess they can tell some by the heart rate and blood pressure. Another nurse said their pupils tell you some too. It just wrenches your heart to think about it so we really try not too.

The doctors are all very positive about his recovery and so are we. We are so excited when anything can come off because he is doing better. So get going ventilator.

these pictures are Pre-Surgery

After much anticipation Truman's surgery day came. They kept giving us general information like "it will be sometime between Thursday and Tuesday" then it became maybe Tuesday or Wednesday. After that they told us ... well it looks like it will probably be Thursday. Then all the sudden Kaiti went up to visit Truman on Tuesday and there were lots of Doctors and medical staff around Truman's bed. Finally a concrete answer. His surgery is going to be Wednesday. The Surgeon - Dr. Burch came and talked with us and gave us the low down on what exactly was going to need to happen. It is a lot of details and if anyone wants the full story just ask Marc. And that was Tuesday.

Then Wednesday came bright and early. We headed up to the hospital with a lot of anxiety and excitement because we knew that this was the step to allow Truman to get better. (and be able to eat sometime) They wheeled Truman downstairs at about 7:45 and the anesthesiologist came
and talked with us. We saw Truman off to the OR and went and waited. And waited. ..... And waited. They were kind enough to give us updates about every hour - like ... Everything is going good, the surgery just started. ... you will probably be able to see him in about 2 hours. Lots of little blips of info.

The Surgery:

So after the surgery Dr. Burch came and told us how it went. He said his numbers were great and the surgery went well, but not as perfectly as he would have liked. Since they had to go into the front they fixed both of Truman's defects at the same time. The reconstruct of the Aorta went great. His Aorta is a litte bit small for his size, but it should be just great. The problem they ran into was when they were fixing the hole between his two lower chambers. The Doctor had felt that there was enough tissue in there to close the hole using that because it is faster and Truman wouldn't need to be on the By-Pass machine as long (which makes them puff up from gaining liquids. The By-pass machine basically works as artificial lungs and heart and takes about a liter to prime. Babies have about 0.4 liters of fluid in their whole body. So they tend to absorb a bunch of fluid from the machine, but it does make the surgery possible.) as if they had to use a patch. Well after they checked the fix to see if it leaked, it did leak more than they wanted. So they put little Truman back on the By-pass and went in and added a patch. the patch is about the size of a teardrop shaped pea. Truman's little heart is about the size of a good size strawberry, so the hole wasn't a teeny pin prick. So the second time on the By-Pass machine puffed Truman up some more and the doctors didn't feel safe closing up his chest just yet. The surgery was a success.

So Truman is recovering in the PICU - It is a lot bigger, brighter and more busy than the NICU. His chest currently has a patch sewen across it so that there isn't any extra pressure on the heart. The nurse said it was clear and you could actually see his little heart beat inside of it, but there are lots of sterile dressings on top of it to keep is safe. about 4" worth. They said today that he is doing great! His blood pressure and heart rate are great, they turned down the respirator 1 setting and it looks like they will be able to close his chest tomorrow, which was originally going to be Saturday. It is still a long road ahead, but it is progressing and we can't wait to see all the tubes come off as He gets better.

We are so greatful for the love and caring of friends and family. We can feel your prayers and hope that they continue. As Danny said on friendnew.net "GO TRUMAN!"

Our Little Trooper

Truman continues to show us how strong and resilient he is. After having a hard day yesterday, he is back to his old self. Truman is having a much better day today. I was lucky enough to get up to the hospital in the early afternoon and when I walked in he was wide awake and calm as can be. His nurse said he slept all night long and was just being cute all morning, looking around and sucking on his binkie. His nurse today said that she has never personally taken care of him until today, but she has watched him since he first came up to Primary's. She said that she is drawn to him because he is so pleasant, sweet, and cute. He is doing so well and taking this all in stride. I have to say that he is handling this alot better than I am.
More on the surgery game.... I was present when the doctors did their rounds today. Nothing much has changed as far as Truman's care on the NICU. He is stable and doing very well. The doctor did tell me that he heard the surgery may be as late as Thursday, though they will try to get him in sooner. So, we continue to be in the middle of a scheduling nightmare. The biggest concern is that Truman be off of his IV antibiotics before surgery, which will happen tomorrow. He is good to go anytime after that. We will continue to have the schedule checked everyday in hopes that his name will be on it before Thursday. If not, as long as he can be kept calm and comfortable he will be fine until Thursday.

A Hunger Strike to Rival Ghandi

We got to spend most of the weekend with Truman up at the hospital. He is doing great he is just really annoyed that he can't have anything to eat. It has got to be uncomfortable not having anything in your tummy for almost 2 weeks now. He is getting the nutrients he needs through an IV, but there is something about actually eating that is comforting. So he has let the nurses know it by fussing and crying. They are keeping him comfortable with some calming medication. We watched him sleep for most of the evening. He is still as cute as can be. I (Marc) changed his diaper a couple of times over the weekend and took his temperature. 

The big news we are waiting for (when they will be doing his surgery) still has not come. We know that it is not Monday, we are hoping for Tuesday, but more likely it will be Wednesday. It is really just a waiting game and nobody has exact info. The list for surgery the next day comes out after 4:00 pm the night before, so we wait and hope to see Truman's name on it.

It is really hard to see him want food and not be able to have any. Let's get this surgery thing rolling, huh?

Just Sleeping

Family night

Tonight, Truman got to hang out with his Grandma Nancy and Aunt Lori. Marc, bless his heart, has been burning the candle at both ends for the entire week and has probably only gotten about ten hours of sleep in the past four days. So, he stayed home tonight and I got a ride with my awesome family. Truman had another good day. He slept for most of the day, but was wide awake when we got in to see him. His nurse had just finished weighing him and he lost a little weight, which she said was good because it was mostly fluid that he is urinating out. They like to see this because it lets them know that his internal parts are doing what they are supposed to. He also passed some gas. How exciting! Oh how parenthood changes your outlook on life. The little things mean so much.

Truman wasn't awake for long. I rocked him to sleep in no time. He loves to be held and rocked, which is a good thing because I love to hold and rock him.
He is such a sweet baby. We love to study his every move and get so excited when he gives us a little scowl or grimace. He is pretty much the cutest baby in the world if you ask me.

Rubber Ducky and the Quacks

Last night we were able to give Truman a little sponge bath. He wasn't too thrilled about it, in fact he cried most of the time, but it was good to here him make some noise. They measured him, weighed him and took all his vitals and he is doing great. He is up to 7 and a half pounds now and that's without eating anything. He has been bugging the nurses because he wants some real food, but the doctors aren't going to give him anything until after the surgery. He has figured out that the binkie doesn't produce and is too smart for that trick.

The cardiologists had their meeting, but we haven't heard from them specifically. So no surgery date yet. The nurses say it is the surgery game and they can sometimes spring it on you, or they can schedule it and then have it delayed by hours. The Nurse was able to look up the notes from the Cardiologists and could tell us a couple of things. 

The surgery is not today.

They want to make sure that the antibiotics have done there thing and that Truman is done with them.

They were going to approach the heart from the side to do the surgery, but after looking at 

it closer they decided they have to go at it from the front and since they are going to do that they will most likely repair the valve defect at the same time. 

So we wait, but it looks like it will be early next week.

We both held Truman last night after his bath, he just slept the whole time. It is always great to hold and see him.

Sweet sleepy baby

Truman had a busy day today. The medical team had to put in a new pic line through a vein in his neck because the other line had to be closed off due to two clogged ports. He also had another Echocardiogram today as well as a cardiac MRI. Needless to say, he was exhausted by the time Marc and I were able to see him tonight. Tonight I changed his diaper and rocked him back to sleep. Marc was in awe. I don't think he has ever changed a diaper before. We will have to practice on some stuffed animals. Truman likes to be rocked and feels comforted by the ticking of the glider back and forth. I know this, because when I stopped he gave me a little squeal as if to say " oh, mom... don't do that".
We found out tonight that he has gained a little weight. He is now 7.3 lbs. Way to go Truman!

We are anxiously awaiting the outcome of the cardiac department meeting tomorrow as we will know when they plan to do his heart surgery. We are hoping for sooner rather than later. The faster we are able to get him to recover, the better we will feel. He is getting excellent care at Primary Childrens, but we want him home of course.

We will keep you posted on any more news regarding his surgery

Welcome to the Gun show

Both Kaiti and I got to hold Truman last night. He was awake and alert the whole time looking around at everything and pulling funny faces. His usual scowl, lifting his eye brows up as if to say "really", and occasionally staring at the tip of his nose. Kaiti held him for about an hour or so, but I got him to fall asleep while I was holding him. He loves to have his arms up. Whether it is out to the side, or above his head. He even showed us his guns and flexed them at one point. It was his left arm that has a birthmark right where you would get a tattoo on your shoulder. The nurses have fallen in love with him and wish that he could stay because he is such a cutie, but he after his surgery it will be more likely he will go to the PICU. 

The doctors will be discussing when his surgery will be tomorrow, but it could be as early as Thursday or next week most likely by Tuesday. It will be hard to see all the healthy steps he has made be taken back as he recovers from surgery, but i has to be done so that he can recover fully. They have removed all his tubes from his face and he is totally on room air. He is doing great. The only thing that has come up is that his central IV has plugged - it is such a small tube it is hard to keep open, so they will have to replace his PIC line so he can be easily given any medication he needs.

Kaiti has been a natural holding him as you can see by the picture. She will be a great mother too him and she can't wait until she feels well enough to be up at the hospital with him all the time. Just seeing and holding him recharges are batteries and makes us feel so much better. I hope that is true with all parents and their kids, they just get a boost when they see them and hold them. Hopefully it won't be long after the surgery that we get to hold Truman again.

A couple of Pics

Holding on and hanging out

Today was a very good day. I got to hold my little Truman for the first time. It was a very special experience for me. Marc was able to hold him yesterday. I was too sick to go to the hospital with him, but today I'm feeling much better. Truman is five days old today but it seems like ages since I haven't been able to touch him very much. He is such a good boy and is looking more and more like his Dad everyday. He absolutely loves his binkie. He really goes to town on it. He also likes to grab onto your finger and hold on tight. He has such a sweetness about him and just makes you smile even when he is giving you a little scowl, which he likes to do as well.

Truman has improved so much while he has been here. Every day it seems like they are discontinuing a medication that he no longer needs or removing some type of assistive device. He is looking more and more like a healthy baby. The last time I heard from the nurse his stats were:

Weight: 6.5 lbs
Height: 20.5 inches

We continue to look forward to the surgery so that we are closer to bringing our little boy home. We will keep you all posted on what's happening with Truman. Thanks for everyone's support and encouragement. We love you very much!

Just some general information

Truman was born by emergency C-section and had a bit of a rough start. He needed some help to get his little engine running. After a bit of looking around at the nurses like they were crazy Truman settled in to his little bed in the NICU. The doctors noticed a heart murmur and wanted to find out more about it. With further investigation it was noticed that Truman had Coartation of the Aorta. (google or wiki it for a better explanation) Basically it is a narrowing of the Aorta as it turns to carry oxiginated blood to your lower body and left arm. This is something that will need to be fixed by surgery. The only thing was he couldn't go straight to surgery because he has to get over an infection first. With the help of modern medicine Truman is working hard to bust that infection right out of town so he can get his heart fixed.