Monday update 11/30/2009

I thought I'd change it up a little bit for tonight's update.

Pros:

• He got his Trans Thoracic Line Off. This means we can hold him more.
• He got his stitches from his drainage tubes off.
• He is off all drips except for 1 maintenance drip for his PICC line.
• We had a coupon for Babies R'us that expired today and bought him some cute clothes.
• He is eating 10-12 ml of milk during his feeds through the bottle. (See Cons)
• His vocal chords sound fine, ask anyone in a 20 yard range.
• His diaphram also looks good, but they are keeping an eye on it.

Cons:

• He is getting 28-30 ml of milk through his NG tube.
• He had some puking today, so he got a new medicine. (Prilosac)
• He has a little liquid around his lungs. Keeping an eye on this.
• Every patient comes back from heart surgery with a Pacemaker attached. Some babies are dependent and some are not. Travis' wasn't even on until Saturday. We found out today that they turned it on in the event that his heart rate dropped too low. When Travis sleeps, coughs, and sneezes there are tiny moments when his heart rate drops below 100. They turned on the pacemaker because of this. They do not seem too concerned, they think it may just be his normal resting heart rate. The idea of it scares us.

Pictures 11/30/2009

Travis just relaxing
Travis sleeping under his tent.
Travis loves to look at his mobile.

Sticking his tongue out at his daddy.

Battle Wounds.

Sunday Night Update and Pictures

The news of the day is that Travis is steadily re-learning how to eat. He had a o.k. day with it. It is a slow and steady progress as his body has gone through such major changes. They started him on 5 cc yesterday and continued to increase it every other feed. He was up to 25 cc tonight when we left him after the 9 pm feed. He only eats what he can and then they put the rest down his NG tube.

Trvis has had some girgling noises in his chest. The doctors say it could be some fluid going down into his lungs or some congestion from the respirator. They want to keep an eye on it. Nicole and I are asking for prayers that this issue is minor and goes away fast.

Nicole and I both got to hold him again today. He has so many wires that it is scary. Well lets pray for a good night and a good Monday.
The Lucky Charm is still rolling. Travis has been around for 6 games and 6 Charger victories.

Enough Said!!!
Travis ready from head to toe for the Chargers game.

Look at all the wires that Travis still has...

I got to hold him tonight...Yeah!!!

Videos from 11/28/2009

Travis this morning after getting respirator off and his final chest tube.

Travis having some good dreams after and exciting day.

Pictures 11/28/2009 - Hooray for Today!!!

No respirator this morning.....Hooray!!!

No Chest tubes today....Hooray!!!

Travis comfy after eating 4 cc of milk.....Hooray!!!

Travis just chilling after a great day.

Travis hiding in his bed...can you see him?

Rainy Day=Progress

Today is a rainy day here in San Diego. I love rainy days! Especially ones that come with great news! As you can see on the previous post Travis made some great progress yesterday. Last night they weren't really doing much with him (in terms of his settings). We were a little frustrated because his gas numbers were all looking good. When we went to bed they were kind of sitting on the settings and we prayed that morning would bring changes. Well, this morning the action began! Travis got his ventilator off at around 9 this morning. He also got to get the third (and last) chest tube removed. The chest tube being out will likely make him much more comfortable because he really hated those. Now, you can see his little face again! They replaced the ventilator with a little nasal cannula that gives him extra oxygen. He'll wear that for a while now. And, Roger just called from the NICU and said that our nurse is going to try to give Travis a little bit off milk! Wish him luck. The easier he can adjust back to eating by mouth the closer we are to going home. The doctors say that coordinating sucking, swallowing, and breathing for heart babies is like running a marathon for us. So, pray that he'll be able to take the small amount and that we can increase it ever so slightly over the next week or so.

Pictures are forthcoming...

Today is a Good Day!!!

Yesterday was pretty uneventful again and they did not do much with Travis. They just wanted him to stay stable and sleep and relax. They did remove some of his drip medicine and a couple of sensor machines. He had a pretty good day and great night. He doesn't like it when they have to clear out his chest tubes. He gets beet red and his blood pressure goes through the roof. It is hard to see him in that much pain.

On the good note, today was great so far. He was weaned down to 16 breathes per minute. He was at 24 bpm last night and they typically remove ventilator at 10bpm. They will be removing 2 of the 3 chest tubes at some point as well. They also plan to remove his nitrous, so he will be breathing room air. He is doing a lot of breathing on his own and that is a good sign. He was wide awake for most of the morning. I got to the NICU at 9:00am and he stayed awake until 10:45 and then slept for 45 minutes and woke up at 11:30 until I left him at 12:45. He is just hanging out getting stronger.

More Post Operation Surgeries

WARNING!

The post-surgery pictures may be difficult to look at. If you do not have a tolerance for graphic post-surgery images, you may only want to look at the pictures leading up to Travis' surgery and the forthcoming recovery pictures which will be less graphic.

Click the link below to see the album of the post-surgery pictures.


http://picasaweb.google.com/rogerd56/PostNorwoodSurgery?feat=directlink

Eyes Open, Chest Open Video

Warning!!!!

I took some more video of Travis right before he had his chest closed. This video is very graphic and should be seen if you think you can handle it. It can be very difficult to look at, but it is amazing to see him move around and look around with his chest open.

http://www.youtube.com/watch?v=W3_N2oGRhzE

http://www.youtube.com/watch?v=F7eb5fwqTUg

Thankful

Today, we are thankful for our lil' Bug's strength. Today he was scheduled to have his chest closed by the surgeons. Prior to the surgery, he opened his eyes and was moving his arms and legs while looking at us. It is truly amazing that he was able to do that with his chest open. He is a little miracle!! At 4:30, they kicked us out so they could close his chest (they do the procedure right there in the NICU). It only took about an hour and a half. Dr. L came out after to let us know that he was closed up. Dr. Lamberti thinks he is looking good but we are by no means "out of the woods" yet. He still has a couple of weeks left of recovery. Dr. L apologized to me for always using sports analogies with Roger and he said he just "doesn't know anything about Spongebob" (in reference to the fact that I teach little ones). That made us giggle. He is a funny guy. So, at shift change (6:30) Travis was still out cold from the anesthesia they gave him for the closure. They put a beautiful new blanket that a volunteer made under him and he looked a little bit "normal". The nurse tried to spiff him up a bit for us. So, for tonight and the next few days we are asking that you pray for his numbers to remain stable and for him to start getting some of his tubes/medlines removed.

Happy Thanksgiving everyone! We all have a lot to be thankful for...especially Roger and I!!

Pictures 11/25/2009

Travis and his mommy sharing some face time.

Nicole was spending some quality time with Travis

Check out all of his electronics

Looking at mom right before chest closure.

This was Travis minutes before they closed his chest. He was wide awake.

This is him right after they closed him up. Big step today.

Wednesday Evening Update - Chest Closure Take 2

Travis had a great night and great day so far. He has stayed stable for the entire time.

Nicole and I just spent 45 minutes hanging out with the boy. He was wide awake looking around. He amazes me that he can do that while his chest is wide open. He was also moving his arms and legs around like it was no big deal. His blood pressure started to rise toward the end of the time, so they decided to settle him down with a little medicine. I have seen strength before, but nothing like that.

They are doing another chest exploration and possible closure. It is a routine procedure, so pray it goes smooth.

A little humor to get us through the day

Top Ten things that we hear at the NICU that we never want to hear again when we get out of here.

10. Did you call the bedside?
9. Got to change the lines, it will be 5 minutes (In reality it takes 30 min)
8. Your last 3 numbers please?
7. Wristbands Please. (When we enter the hospital they ask for them everytime)
6. Scrub up and come on in. (You are asked to scrub in prior to entering NICU)
5. I'm the resource nurse today/tonight, do you need anything?
4. Every drop counts?(Talking about Breastmilk)
3. Are you pumping every 2-3 hours? along with, are you taking Fenugreek?
2. We are giving him lasix to increase fluid output. We are taking him off lasix because he is losing Potassium. (We have heard this several times)
1. How's the Blood Gas look?

Tuesday Evening Update

Today was an uneventful day. They really did not change much with Travis today. They want to keep him stable and waiting to see how everything looks. They did a ton of tests last night to figure out if there is an infection. So far, all of the culture tests have come back looking good. Nicole and I got to spend alot more time by the bedside today. He opened his eyes a couple of times for a second. We are just playing the waiting game and seeing what the next step will be.

Highs and Lows

Tough day! The day started off with seeing Travis and finding out his Fio2 number (oxygen) had to be double over the night. We were really concerned about this number because everything else looked good. They said any number of things could be the reason. As such, they put him back on nitrous. Dr. Lamberti did the chest exploration (opened up the wound to see if everything looked okay and to see if it was ready to be closed up). He decided not to close up his chest and just to give his heart and lungs a little more time to recover. He did take the packing out. He mentioned to us that he was surprise they had taken Travis of the nitrous to begin with. Anyway, as the day progressed Travis continued to be stable but they messed with his numbers (settings on the machines) all day. Tonight, his blood pressure and heart rate went high. His heart rate was 197 at one point. They also found out he had a fever. They are thinking that this MAY be some sort of infection. So, they took cultures and send them to the lab. They also started him on two general antibiodics, just in case. After starting the antibiodics and giving him a little pain meds his heart rate and fever came down. As we left right now, he was resting comfortably and his numbers were all looking good. He opened his eyes for us a couple of times today...trying to reassure us that he is a fighter.

Roger and I are having a rough night emotionally. It is so hard to look at our baby lying there. We go in optimistic and all these little things really start to wear on you. The nurses and doctors never seem too concerned over numbers, etc. Every time we see a change we panic...it's our baby. It hit us in the face tonight that this panic is NEVER going to go away. We know normal parenthood has constant worries but in our case we will forever be worried about oxygen levels, heart beats, and infections...essentially, life and death. That is a heavy burden to carry. It seems so unfair and unreal. We still have periods (like tonight) where we are so angry! Angry that we have to endure this and angry that our little baby has to go through all of this. We get by day to day but the fear and anxiety never go away...it feels like they are getting worse.

We need to focus on the good things...like lil Bug. He is beautiful and he is a fighter and he will be such an amazing little guy. I dream of the day we can introduce Vinny and Zee to their baby brother. Time...we just need to hurry through these rough times and trust in God.

Post Surgery Video

Warning!!!!

Warning!!!! I took some video of Travis today with his chest exposed. This video is very graphic and should be seen if you think you can handle it. It is very difficult to look at, but it is a necessary step for Travis' recovery.


http://www.youtube.com/watch?v=MnNzeyIkAx8

Monday Afternoon Update

Travis is stable and is still on course for recovery. They did a exploration of his chest today to see what it looked like and see if it was ready to be closed. Dr. Lamberti thought that things looked good, but wanted to hold off on allow more time for the swelling to go down. He did remove some of the packing in his chest as an intermediate step. Dr. Lamberti is known to be very cautious and does not like to rush things. He also is known for his quotes and sports annodotes. His quote for today was "It doesn't matter if the baby steps take 1 or 2 days, it is the end goal that we are worried about." His final comment as he was walking away was that Travis looks good.

They will continue to monitor basically everything, but specifically his oxygen levels. They will revisit the chest closure tomorrow.

As for now, we are just letting each step take its course. We are not in a rush at all., All we want is him to get better in his own time.

Monday Morning Update

Travis had an o.k. night. They stopped weaning him off of stuff. They then had to raise some of the levels of the respirator. They also had to put him back on nitrous after taking him off of it. They are doing a chest exploration right now to see how everything looks inside of him. Dr. Lamberti will also see if his chest is ready to be closed. His decision will be based on how well the exploration goes.

Will keep everybody updated.

This is a good reminder that we are not out of the woods yet. We were told there would be some ups and downs. We felt that everything was going so well that we thought it Travis would be the exception.

Another Sunday at the NICU

We sat in the waiting room for most of the day checking in on Travis every hour for our 5 minute visit. Travis is doing really well. Blood gases continue to look good. They will not wean him anymore tonight from the ventilator because they plan to close his chest tomorrow at 11. Travis is so strong! He is moving a lot & they don't want him to. We are really trying not to talk to him or touch him much. Imagine moving around with your chest wide open. He amazes us! And God amazes us!

Now for some fun with Pictures. It is a needed distraction for me to work on the computer with this blog and use the computer. It occupies the time in my mind, so please don't make too much fun of me.

Travis definitely had his Charger Mojo going again.

He couldn't wear his Charger hat or bib today, but be sure he had them near him.These are the pictures that are connected to Travis' bed in the NICU.

Although Rivers, Tomlinson and Gates played great today Travis is showing them how to fight beyond all expectations. I love my baby boy.

Videos Pre-Surgery 11/22/2009

These videos were taken minutes before he went into surgery. He was just hanging out looking around.

Sunday Morning Update

Travis had a great night. His blood gas levels have been looking good and they continue to wean him from his vent settings. The surgeon even considered closing up his chest today. He is so strong he is trying to move his head already. They don't want him doing this yet so they gave him some extra sedation. He is sensitive to light and sound right now, so they are still asking us to just visit him for 5 minutes every hour.

So Nicole and I are just sitting in the waiting room shopping online for Christmas presents. Current score Travis 4 - Others 0. Nicole drew the line when I asked to buy "HIM" the Wii Gaming console. Thought I could get away with that one.

Will keep everybody posted.

Oh by the way, Travis has his hat and bib ready to go for the game today. He says, "GO CHARGERS!!!"

Post Surgery Pictures

WARNING! The post-surgery pictures may be difficult to look at. If you do not have a tolerance for graphic post-surgery images, you may only want to look at the pictures leading up to Travis' surgery and the forthcoming recovery pictures which will be less graphic.

Click the link below to see the album of the post-surgery pictures.

http://picasaweb.google.com/rogerd56/PostNorwoodSurgery?feat=directlink

We feel the need to share with everybody the whole Travis' journey and that includes the tough pictures that we have to endure. This is a necessary step for Travis to get healthy and even though it is extremely tough to see our baby boy like this, we understand the need for this step. A lot of people have been following Travis the past couple of months and have a vested interest in his health. Thanks again for all of the support.

Travis Update.

We got to see Travis finally. It was like a dream to see him in the state that he is in. His chest is open and I can see his heart beat. I have prepared myself for that moment many times by looking at other babies that were post operation. It helped. For those parent that posted those pictures thank you.

They are monitoring a ton of things, but are really looking at his blood gas level. We can only see him 5 minutes every hour. We will go see him again at 8:00.

Thanks for all the prayers....

Update from Dr. Lamberti

Quote from Dr. Lamberti about Travis' Status after Surgery:

"We don't have a 20 point lead, but we are ahead and were playing well, but the game is not in the bag."

NOTES: From Dr. Lamberti - Post Operation

Things went smoothly. The operation went fine, there were no surprises. Travis has an unusual aorta, but the repair looks good. The post surgery echo looked good.

The amount of oxygenation in his blood isn't as high as he would like, but it has gotten steadily better as he has gotten out of surgery. His chest was left open to allow for the swelling or any other procedure that may be needed.

He said that basically he looks pretty good. This is a major surgery in a newborn and his status could change minute to minute. From his point of view, he is very happy with the repair.

He is a little worried about the blood gases, the amount of oxygen in the blood, he wishes it were higher, but its not so low that he needs to do something right away. He would be more relaxed if it were a little higher.

The procedure took a lot longer than expected, because they had no place to put the i.v.'s. They didn't make the first incision until about 10 o'clock. At the end, they had some troublesome bleeding which is typical for babies like Travis. These babies blood doesn't clot after such a long operation.

If the blood gases don't rise there is a ton of things that can be done. If his blood gases were not good and his heart muscle was too weak they could put him on ECMO. He doesn't expect his heart to be weak. ECMO would be a first fix, if the problem is ongoing they can go back to surgery and put a bigger tube in to increase blood oxygenation.

His heart started right back up. Travis' heart did not give them any trouble.

We have not seen Travis yet, but hope to see him soon.

Please pray that his blood oxygenation levels rise and all of his blood gas test come back good.

No update yet...we are in the waiting room awaiting some news...

Nurse Update - 2:00pm

Our nurse just called to let us know that everything is still going well. The Cardiovascular technician told her that everything is smooth.

We feel really blessed to have nurse Julie with Travis today and tomorrow. She is great with Travis and Nicole. Our pastor once said that the right people, right place and right time will show up when you need them most.

I feel like he is right.

Pictures 11/21/2009 - Pre-Norwood

DiCarlo Family 11/21/2009

Mommy giving Travis a pep talk.

Walking down the hallway towards the O.R.

Into the Operating Room.
Mommy and Daddy don't worry about me. I'll be o.k. See you soon.

Pictures 11/20/2009

LOVE

Travis was double fisting his bottles last night.

Look who is super comfy.

Daddy whats the football score. I was keeping Travis updated on the San Marcos Football score all night. Unfortunately the Knights came up short in the playoff game. Travis was disappointed.

Travis got his second EKG. It looks scarier than it is.

This is what his chest looks like prior to his Norwood surgery.

Norwood Surgery Morning

Last night, Nicole and I spent some quality time with little Travis. His last opportunity to eat some yummy milk was at midnight and boy did he take advantage of that opportunity. He ate 70 cc, which is the most he has ever had in any sitting. He actually had to get a second bottle warmed up and ready. He also stayed awake looking around and showed us how strong he is getting. I think that helped Nicole and I get some sleep and be ready for the early morning wakeup call.

This morning we headed over to the hospital at 5:30 am to see him with our Pastor Mark Kuhn. Travis was wide awake looking around for some food. After our nice prayer with Pastor Mark, we got to hold Travis for a while. Travis went back to sleep in mommy's arms for a little bit, then I got a chance to hold him and he then went into a deeper sleep. It was funny, because he was so comfortable that his respiratory rate dropped low enough to set the alarms off. He was not in any trouble, just super comfy.

Then Travis got pissed as they had to take his temperature and change his diaper. Usually this is followed by food. Travis decided to show us that he is like any newborn baby. He through a huge temper tantrum. His arms and legs were flailing around while he screamed at the top of his lungs. Let me tell you that the whole NICU could here this little boy. It was starting to make us sad that we were going to take him to surgery so upset. After some of daddy's bad singing and some swaddling Travis finally calmed down.

We then were off to the operating room. In the hallway, we got to stop for a second for him to meet his Grandmas and aunties. They all got to give him their first little kiss to wish him best of luck. SSSHHHHHH!!!! We weren't really supposed to have them their, but we snuck them in.

Nicole and I then got whisked away to the Operating Room Holding Area and got to spend some more quality time with the boy.

He looks as strong and as good as he has in his short 4 weeks of life.

Let this be an indicator of how well he will do in long run.

Take care and keep the prayers flowing.

Nurse Practicioner just paged us at 1:00 pm and let us know that they had some trouble getting the IV's and lines in so the actual surgery started a little late. She said it'll be 2 to 4 more hours. She said so far things were going smoothly. Travis is still ON the heart/lung bypass.

HLHS Poem and Prayers

I feel the need to re-post the HLHS Poem that I found on another parents HLHS Blog.

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared.

He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Norwood Operation Photos

These pictures our courtesy of another HLHS babies blog. As we prepare for the surgery tomorrow I happened to find their blog. He is a good looking little dude and is doing great. It is always positive to see good stories about HLHS Babies.

http://jacksonhardy.blogspot.com/

Travis Gary DiCarlo

Our Little Heart Warrior

Be strong and courageous.

Do not be terrified;

do not be discouraged,

for the Lord your God will be

with you wherever you go.

Joshua 1:9b

Updates and 11/19/2009 Pics

Travis surgery has been postponed to Saturday at 8 am. Our surgeon, Dr. Lamberti wants do be rested and fresh for Travis. He had previously scheduled 2 surgeries for Friday and Travis' was his second one. Dr. Lamberti just got back from working in Hawaii for a week and travelling to Florida for a conference. If he needs the extra time to do the surgery right then that is fine. We hate the additonal wait but we understand. Keep those prayers and good thoughts coming.

Here our some of the new pictures of Travis. We got to put some clothes on him today and it was exciting to see him look like a regular baby boy. DiCarlo Family - 11/19/2009

Travis was wore out after his lunch.
Travis got some swing time today. He liked it.

Travis doing his monkey impression.

Mommy and Travis.

We got to dress up Travis today in his monkey outfit.

Travis was taking advantage of the pocket in his sweater onesie.

I would say that Travis is comfy in his swing.

Check out Travis' new sweater onesie.

Travis is one serious little boy.

Travis is loving life in his swing.

Check me out.

I swear this modeling is tiring.