Christmas 2010

DiCarlo Family Christmas 2o10

Travis playing with his new car toy.

Nana with both of the kids.

Nicole showing Travis his new toy.

Travis wants nana to get out of the way, so he can ride.

Travis checking out the scene.

Travis showing off his new Xmas shirt. (Daddy doesn't approve, he's a Oklahoma fan)

I love Christmas.

Hey mommy!!! Is there more?

I need to make a phone call.

Weeee!

This thing is really cool.

Mommy and Travis reading his new book.

Travis got some stylin Yo Gabba Gabba shoes.

Travis showing off his new wheels.

Travis playing some hoops with his buddy.

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Tornado Travis

I am totally changing Travis' name to Tornado DiCarlo.

Today, I had both kids home and I was alone in caring for them. In the span between 8:30-11:00am he managed the following:

*to empty the entire contents of the kitchen drawer that holds all of our dish towels
*to empty the entire contents of the cupboard that houses our tupperware
*to remove all of the magnets from the refrigerator and scatter them around the floor
*to take the magnetic notepad off of the fridge and rip every sheet off and then rip several sheets into pieces
*to splash water from the dogs dish all over the floor and his pajamas
*to remove every last hair clip/accessory from the drawer in the bathroom and scatter them all over the floor
and finally,
*to purposely let his bottle splash all over our bed (and I just washed the comforter yesterday)

As you can see, life with Travis these days is a whirlwind! I love him so much that it totally makes up for his shenanigans! He is so full of life these days. My favorite recent thing is that when you catch his eye and then smile at him he will return it with the most loving and gorgeous smile I have ever seen!! He is SUCH a momma's boy lately. Since Addie has joined the family, he wants me ALL.THE.TIME. At night, he will not go to sleep with daddy's help. He likes me to lay with him and he literally crawls up onto my belly and lays down on top of me to snuggle. It is the cutest thing! Maybe he sees Addie doing that and that is why he has picked up this new habit. Then, after he falls asleep, I will move him onto the mattress and he will want to sleep with his head on my shoulder and his body snuggled in the space between my arm and side. He will grab my arm an hug me. I love this!

Travis is adjusting well to having Addie around. I think he realizes that she is here to stay. Even though we are all in the same room at night, he is now sleeping better and a couple of times he actually slept through the night, WHOOOHOOO! I hope that continues. Roger and I alternate getting up with Addie. I forgot how LONG the feeding routine of a newborn takes (45 mins-1hr). However, our rocking chair faces the street and I really LOVE rocking her and looking out the window at the Christmas lights. It is such a peaceful time!

We had took Travis to his bi-annual pacemaker clinic yesterday. It went well. The doctors downloaded the info from his pacemaker and reported that he is only using it 2% of the time. I think that is about the same as last time. That is good news. His cardiologist examined him and noted that everything looked really good. On of the cardiologist from Children's was also there (the same one that was on duty when he had the horrible reaction to the cath last month). Anyway, he was pleased to see how well he looked. He also made some jokes about me going into labor that day. I told him it was his fault. :) Anyway, the next step for Travis is an echo on January 4th. Then, he will have another heart cath mid-February. During that cath they will try to open up his aorta. Dr. Levy (his cardiologist) is trying to get together with Dr. Lamberti (his surgeon) to make a tentative "plan" for his next surgery. Hopefully, they will be in touch soon.

Adjustments in Progress

My, it really is hard to find time to post these days with a new little muffin in the house. The newest member of Team Travis is fairly easy to handle to date. The tough part has been trying to juggle Travis lately. He is such a little toddler now. He is into EVERYTHING! He loves to throw things and is quite destructive. We are trying to teach him to be "gentle" with his new baby sister. He is very good at giving her kisses but then he wants to touch her. Instead of touching nicely the little guy palms/claws her face. Poor little girl is getting beat up daily. Oh, we will have some therapy bills in our future. Another tough thing has been the sleeping arrangements. Yes, Travis STILL sleeps with us. We just can't figure out how to get him into his own room in a non-traumatic fashion. Anyway, because of this Addison and I (Nicole) slept downstairs for the first week or so to see how she slept. We finally moved upstairs and she sleeps in the bassinet right next to us and Travis is in between us. It is quite cozy but the rough part is that when either is hungry their cries wake the other who then wants to eat. Travis has never slept through the night so nighttime wakings isn't new to us but his waking frequency has definitely increased since Addie's arrival. She, on the other hand, seems to be a pretty good sleeper and I am hopeful she will sleep through the night sometime before she is 20. ;)

Travis also had a rough week or so around Thanksgiving. He is SUPEr cranky and we couldn't figure out why since everything seemed ok.....normal SATs, eating well, etc. Turns out he was getting a tooth and a cold. That, combined with some jealousy of Addie, made for a real rough couple of weeks. Currently, he is still fighting off his cold. His spirits are high and besides a super runny nose you couldn't tell he was feeling bad.

It is definitely hard adjusting to having two babies in the house. When you have one baby you can get a little "break" by handing them of to your spouse. With two babies this isn't often possible as generally they both need something at the same time. I have only spent a little bit of time alone with both of them and I still need to learn to juggle their needs. It is still a little surreal that we have two. Honestly, our life feels like a crazy dream some days :)

Travis is really enjoying all the holiday decorations. He loves to look at the lights around the neighborhood and he really enjoyed the little parade we went to this past weekend. We are looking forward to taking him to the Del Mar Racetracks Light Parade. I am sure he will love it. We are also so looking forward to this holiday season. Last year was a blur as we had just been released from the hospital and we were so full of fear with our new medically fragile newborn. This year we have so much to be thankful for. Although life can often seem so daunting, I want to make sure that we never forget the wonderful blessing that we have in Travis (and Addison too). Travis is a miracle and never ceases to amaze us! I thank God for this holiday season with him and we continue to pray for many more!

We are still waiting to hear on the exact timing of the next cath procedure. We will let everyone know when we get the news. Until then his cardiologist is monitoring him closely.

Oreo face

Travis LOVES his oreos!

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Some new pics of Travis

Travis smiling big for the camera.

Travis Christmas Pic 2010

Travis was super helpful with putting up the Xmas lights.

Travis and his heart buddies. All of these little miracles have half a heart.

Travis meets Santa

Travis got to meet Santa for the first time and was not too happy. Below is the picture of his terror toward jolly ol' saint nic.

Travis gets to meet his new Sister.

Travis checking out his new baby sister.

Thanks to Auntie Jen for this adorable Big Bro Shirt.

The DiCarlo Family

Travis being nice to his little sister.

Addison Sue

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Addison Sue DiCarlo

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Sibling Rivalry

So baby girl must have been jealous of all the attention Travis has been getting so she decided to break my bag of waters and arrive tonight!

We were just getting ready to go and I stood up to get Travis and felt a leak. It wasn't much so I honestly thought I wet my pants. I wasn't even going to go get checked out. Roger dropped me at the hospital and took Trav home. My friend Jen came over" just in case". Anyway, they tested the fuid and sure enough....it was baby time. A lot of our family is sick and can not be around Trav so we had no choice but to have my mom stay with Trav. I wanted her here but was happy to have good care for Trav. Csection was at 9. Addison was born at 942. She is small like her brother....she weighed 6lbs 10oz and is20 inches long. She looks like Travis. Our cardiologist just happened to be on duty tonight so he was in the room to do the check and apgar scores. She score a 10. Shortly after he did an echo and her heart looks healthy. Praise God!

All day yesterday the docs and! Nurses were joking and worrying about me going into labor with the stress and I was egging them on. Lol. I had to call Nurse Megan and let her know that her prediction was right! We seriouslu couldn't write this stuff up....our life is crazy. God is hilarious!

We are exhausted but happy. I feel great post surgery just real hot and itchy. Can't wait to see my family and Travis tomorrow. It is going to be amazing to watch him interact with her. We are blessed!

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Travis is out of the hospital and Nicole is in one

The short story. Travis got discharged about four this evening and as we were signing the papers to release him, Nicole's water broke. Baby number 2 will be in our crazy world shortly.

Stay tuned.

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A Rough Recovery

So, scary is the word of the night. I don't think I have been this scared in quite awhile. Shortly after they moved us to the Intermediate Care Unit where we would be spending the night, things went south, quickly. I noticed that Travis was really red from his chest up on the walk over and mentioned it to the nurses but they dismissed it as part of the mild fever he was having. They fever never went away, even with Tylenol. Travis was SUPER irritable and just could not get comfortable. He was so sleepy but was thrashing around. His oxygen saturations kept fluctuating from the 50's to the 70s. They tried to put an oxygen cannula in his nose and he was irate about that. We COULD NOT keep it in. Not to mention he was screaming and WOULD.NOT.STOP. His heart rate was close to 200bpm. They called the cardiac team in. They did a quick echo and xray.....heart function looked good. They suspected that possibly it was a reaction to anesthesia so they gave him IV benedryl which calmed him a little but only as long as mommy held him and rocked him standing up. I tried to sit down several times and the screaming continued. To make matters worse the air in the room was not working so I felt as though I was going to pass out!

It was horrible when he is acting so out of sorts and the nurses kind of expect you to be able to figure out the problem. I was so frustrated today, I was in tears....nothing I was doing was helping!!! They kept leaving us in the room alone while he was screaming and flailing about. It really was terrifying when he was acting like that and his heart rate was so high!! I didn't know what to do.

Eventually, he calmed down enough to fall asleep on me. I managed to sit down with him. The doctors decided that they were not too worried with the crazy oxygen saturation since all of his other numbers looked good and he was looking calmer and more peaceful. After meeting, they came to the conclusion that this is probably an allergic reaction to the anesthesia and/or a horrible headache caused by the new pressures in his heart due to the stent opening. The plan is to let the anesthesia wear off (24 hours) and do another detailed echo in the morning just to make sure all is still good. His oxygen sats are still worrying me but the fellow keeps coming in and he seems calm about it. They have some oxygen blowing by Travis' head just to help a bit.

He did wake up from that earlier nap a little more happy. We put on Sesame Street videos on the computer and he was even dancing a bit to them. He definitely is fighting sleep still...he'll get so tired that he is sitting up with his eyes closed but then they will pop open and he will try to move around/dance/play. Right now, he is sleeping in the crib (first time all day I've managed to get him to lay in there and sleep). I am exhausted......Roger and I are splitting the night shift so my turn to rest is coming soon. I am hopeful that the morning will bring normal SATs and a back to normal Travis. I miss my happy guy....I HATE seeing him in discomfort/pain.

Pray for our little dude! Thank you.

Sleepy Head

Here is Travis in the recovery room. We just now got in to see him. He has woken up enough to chug 4oz of water. Poor dude is thirsty, hungry, and exhausted. We are headed to a regular room soon.

Out of the Cath

So, overall the cath went well. The crazy thing is the machine broke....right after they were finished with the major portion but before they were finished. So, here is the long and short of it all.

Travis' heart had good function and good pressures. Unfortunately, they saw narrowing in three places: the aortic arch, the pulmonary artery, and the sano shunt. The most extensive was in the shunt. They were able to balloon and stent that open. As for the the pulmonary artery...they plan to wait on that as it is not extensive. For the aortic narrowing, they wanted to attempt to stent it open but the machine broke. So, the plan is that we will need to come back for another heart cath procedure in 3 months. Since his heart function is good, they are comfortable waiting until then to try to open the stent. The Dr. said she was probably going to need to have him come back in 3 months anyway to close off some collaterals that have opened up by his pulmonary arteries.

In three months, they will attempt to open the aorta. Sometimes, they can do this in the cath lab and sometimes it requires reconstruction in the O.R. If they are unsuccessful in the cath lab, Travis' surgeon will need to decide if he wants to move up the Glenn/Fontan procedure and include the arch reconstruction OR do the reconstruction as a separate surgery (I presume that he would choose the ladder since the Glenn/Fontan combo is a big deal already). Again, the goal with Travis is to keep his heart function and Oxygen saturations stable until he gets to an age/weight that would be optimal for the Glenn.Fontan together (originally, we were told that would be 17-20 months old, so June-ish).

We will be staying overnight as the doctors want to make sure that the ballooning of the shunt doesn't do anything wacky. Please pray that he wakes up and is not in a lot of pain. We are waiting in the waiting room to see him.

Thanks for your prayers and good thoughts!

P.S. Have I mentioned that life with a heart hero is like riding a crazy roller coaster? It's crazy!

Travis is in the cath lab now

They said it should be 3-4 hours. Roger and I are on pins and needles waiting to hear what is going on with his little pulmonary branches. We had to sign forms saying that they could balloon or stent if need be. God, please let the narrowing be minimal and let them be able to stent it open in the cath lab!!!

The hard part about the cath lab is you walk him in and wait with him as they put a mask on with the sleeping meds. Poor guy was crying so hard! I just kept rubbing his sweet little head until he fell asleep.

I love the little guy so much! Pray for him!!

Halloween 2010

I love Halloween!!!!

Travis loved looking for the candy.

We think Sour Green Licorice is his favorite.

Yummy.

I like the Red Licorice too.

I love being a Turtle.

Nicole and Travis on Halloween.

Daddy and Travis on Halloween.

Our little sweet Turtle.

Cath is Scheduled

Children's called today and Travis is scheduled for his heart catheterization on Friday, November 12th in the early morning. Please pray that the cath procedure will show minimal narrowing and that the doctors would be able to balloon open the narrowed parts of his pulmonary artery. Thanks you.

Pumpkin Patch

We took Travis out to the local pumpkin patch a few weeks ago. Too bad it was a million degrees out there that day and that made him a cranky butt. We had a good time though and met up with some friends.

Still waiting to hear from the Children's team as to when the heart cath will be. We will be sure to update everyone when we know anything. Hopefully, it can be done before 11/24 when we are scheduled in the O.R. to deliver Travis his baby sister.

Happy 1st Birthday Travis Gary!!!

So, this post is a few days late. Sorry about that. It is difficult to find a free minute these days.

Saturday, October 23rd, our little heart hero turned 1 year old. It is hard to imagine that a whole year has gone by. I have described this past year to friends as the longest, shortest year of my life. The bad parts seemed to drag on and the good parts seemed to go by so quickly. I have to say that we are SO, SO, LUCKY to have Travis in our lives. He is such a special little guy. I have never met a baby that smiles more or has a better personality than Travis. Given all he has been through, it is amazing he has such a bubbly personality.

One year ago we were filled with terror at the unknowns. Would our boy be born a fighter? Would he make it through the Norwood? We he ever use the room we so lovingly decorated? I remember the excitement and the terror I felt during labor. I remember the pain and sadness I felt when Roger and my newborn baby left me in the recovery room on their way to Children's Hospital. Most of all, I remember how my heart felt so full of love for this little guy. I had to wait 5 long, painful days to get to hold (more like lift) Travis and the rush of emotion that day can never be described into words.

To celebrate one hell of a year, we decided to invite some close friends and family to a local park for a Yo Gabba Gabba themed party. Travis really loves that show (especially when he is fighting eating) so we thought it would be appropriate to use the Gabba creatures as our theme. Thankfully, a week full of rain cleared up just enough to enjoy a nice Saturday at the park. Here are some pictures from the party:

Travis in his birthday shirt

Birthday banner made with love and a lot of curse words. It turned out cute though!

Table decor

More decor

The cake table. I made a big Muno cake, a mini Muno cake (for Travis), and Brobee cupcakes.

Brobee cupcakes

Muno cake

"Happy Birthday to you, Happy birthday to you.....and, MANY more!!"

He wasn't so sure of it. He barely ate any!

"I don't want to eat it mommy but it is fun to play with."

Present time! Notice the Yo Gabba Gabba shirts that mommy and daddy have on. Travis would grab at the characters and smile!

He LOVED these sesame street stackers! Look at that smile!

"What's next mommy?"

Overview of the party