Thursday, December 31, 2009

Pictures and Updates

There really is not much to report. Travis is doing so good with no real issues. He is still eating really well and we are starting to get into some routines. I think we got the medicines down pretty good and he does a really good job of taking them. Nicole and I share the nighttime routine and that is going relatively smooth. It is going to be really hard for me to go back to work and leave Nicole and Travis for the entire day. It has been really nice to have this winter break to get accustomed to having a son. I am going to miss my little bugger.
Take care and HAPPY NEW YEAR!!!
Carol and Mark Kuhn (Our Pastor who married us) taking care of Travis/
The DiCarlo Family 2009
A Travis Sandwich Kiss.
Travis showing off how strong he is getting. Check out those Neck muscles.
Check out Travis' Mohawk.
What's Up World!!!
Check out this cute outfit, especially the bear feet.

Monday, December 28, 2009

Looking Good

We ventured out today to drop off some food to some friends at the Ronald McDonald house and brought Travis to another cardiology check up. The nurse weighed him and he is up MORE (he's gained 5.6 oz since Friday). Now he weighs 8lbs 14.6oz. I told Roger I want to have a "ten-pound party" when he hits that milestone. Weight gain is great for him right now because he needs to get bigger and stronger before his next surgery. Travis' oxygen saturation levels and pulses are also looking really good. Dr. Levy said he can hear the sano shunt working well with the stethoscope. We were really pleased with Travis' appointment. The Dr. didn't even really say he needed to see him prior to his heart cath (see below) but we said we'd like to see him again just to check up. So, we go back to him on the 8th.

Travis' next scary hurdle is a procedure called a Heart Catheterization which is scheduled for January 13th. They will take a catheter and thread it through passageways of the heart looking for thinning or narrowing. If need be, they may need to place a balloon to open up any partially blocked paths. The findings in this procedure will tell the doctors about when he will need his second surgery (between 4-6 months of age) and if any of his medications need adjustment. We will be in the hospital just one night. We are not looking forward to this but we understand it is an important evaluative tool for the doctors to gauge the effectiveness of the shunt put in during his Norwood operation.

We also have an appointment with the High Risk Infant Doctor on Jan 12th. She will be the one to assess Travis and his developmental progress. If need be she can order occupational or physical therapy treatments to help him along with his milestones. Sometimes heart babies are slower to hit milestones due to everything they go through. Although Travis seems great to us we really have no idea as he is our first child. So, we are thankful they will start tracking him and his development early on.

That's it for now....Happy New Year!

Saturday, December 26, 2009

Chargers game on Christmas

Travis is truly spoiled. All he knows is that the Chargers win every week that he has been alive. The Chargers win streak started the weekend of his birth. Now the chargers are on a 10 game winning streak. Can't wait until next week. GO CHARGERS...
Travis was ready to go for win number 10.

Travis was only concerned a little bit during the game.
Travis was super happy after the Chargers whooped up on the Titans.

Travis' First Christmas

Auntie Tina, Nicole and Travis on Christmas Eve
Daddy and Travis on Christmas Eve
Nana Sue and Travis sharing a Christmas Moment.
Nana Sue, Nicole and Travis on Christmas Eve.
Mommy and Travis' First Christmas together
Travis got to meet his Great Grandma Jane.
Christmas at Grandpa DiCarlo's House (Nicole took picture)

Happy Birthday Travis and Jesus!

Travis Gary is now 2 months old! Happy Birthday little Bug!

HOMELIFE: It's been hard to get enough time for a proper update these days with little Bug being home and trying to get everything done around the house after being gone so long. We are slowly getting the hang of having our little boy home. For the most part...he is pretty easy. He generally sleeps well and calms down quickly when he gets fussy. He usually is just fussy when he is hungry or wants his pacifier. He's addicted to his orange pacifiers! We have a bassinet next to our bed in the room and he sleeps there (as he will until he is probably 18 :). We have not yet gotten into a "routine" yet but when we were sent home from the hospital we were on a 3 hour feeding schedule that we have been sticking with until recently. Because Travis is so small we have to feed him a lot. We can not let him sleep through the night...even if he wanted to. The hard part about getting into an official routine is that we are uncomfortable leaving him alone AND we have to hook him up to the, when we put him to bed we have to go upstairs too. So, we generally let him sleep downstairs with us until around midnight then we go up to sleep. The monitor has proved to be a comfort and a pain in the ass all at the same time. If you don't get it in the exact right spot on his hand it will randomly start beeping in the middle of the night. It will read his heartrate or SAT level incorrectly and show it really low and then bounce back up to the normal rate. As you can imagine, being woken up by this is unnerving to say the least. We plan to talk to the doctor on Monday about the accuracy of it because it seems really off. We finally have his medications down pat. We got a ton of syringes at the pharmacy and a plastic box with drawers. Now, once a week I will draw up the doses of meds in advance and put the in the box. Having the meds pre dosed out makes the days a lot easier! We also found a vitamin that is not as horrendous as the last one. Travis likes it much better. He still HATES the prilosec but it is working so we are sticking with it!

APPOINTMENTS: We went to see Travis' cardiologist in our first outpatient appointment on the 18th. He checked Travis out and wieghed him. Things looked good and Travis had gained 3oz since he was discharged on the 14th! We also had an appointment with his regular pediatrician for his two month checkup on Christmas Eve. We were hoping that this pediatrician would be knowledgeable and up to date on Travis' condition. We had not yet met him because all of his care was immediately transferred to Children's hospital the day of his birth. Now that he is out of the hospital, day to day care goes back to Kaiser. The pediatrician was up-to-date and he seemed great. The best news was Travis has gained another 3 oz making his weight 8lbs 9oz. Although he is gaining at a good rate for him he is still only in the 2nd percentile for his weight. Our little man! However, because the weight gain is going well the pediatrician said we can go 4 hours at night between feedings. His length is now 21 inches. Travis also got his 2 month series of shots at our visit...which probably was not a good idea as he was MISERABLE and fussy Christmas Eve night and all day on Christmas :( We have another appointment with the cardiologist on Monday.

CHRISTMAS: We really did things simple this Christmas as we had neither the money nor the time to properly shop for the family. Also, because Travis can't be around a lot of people we toned down our celebrations as well. Christmas Eve was spent with Nana Sue, Auntie Tina and Auntie Deb at our house. We made a lasagna and exchanged a few little gifts. Travis of course was spoiled silly and is set with toys for awhile. Unfortunately, Mr. Grumpy Pants (Travis) slept through the gift giving because he was so miserable from the shots earlier in the day we had to give him Tylenol. Good thing we had family to help calm him and snuggle him all evening. After the family went home Roger and I tried to go to bed but Travis was super fussy all night and was up every hour and a half. Poor little guy! Poor us! Christmas day was spent with the DiCarlo family. We had a nice lunch and visited with Travis Great Grandma. Travis got some nice gifts from that side of the family too. He was not as fussy as the day before but he still was not himself. We decided to head to Vista to watch the Charger game with Nana but realized we were out of one of the meds so instead Roger had to take a trip to the pharmacy in Riverside. Travis and I cuddled and relaxed on the couch. Thankfully, Travis slept better last night too!

We got an update from one of the other families we met at the RMH and they were told they could go back to Hawaii on Christmas eve only to be told that they couldn't a few days later because their baby needs to get a Gtube put in first to help him eat. Please add baby Jaziah to your prayers. They have been through so much!! So, although we were super sleep deprived for our holiday, we had to remember we have SO much to be thankful for. Our little baby is safe at home and thriving! Happy holidays to you all and we pray your new year will be a fabulous one!

Tuesday, December 22, 2009

Pictures from the Last 2 days....

Travis doing a GQ modeling shoot.
Travis just chilling on his blanket.

Daddy, why are you shooting so many pictures?
What's that over there?
Okay, this boy is super cute.
Mr. T. DiCarlo is a serious eater.

Sunday, December 20, 2009

Chargers Lucky Charm still rolling

Travis and me watching the Chargers game for the first time at home.
Travis slept through most of the game, but still had his charm going.

Saturday, December 19, 2009

Pictures from the 12/18/2009 and 12/19/2009

Our first family outing was to church. They have a crying room in the back that we felt safe to take Travis too. The room was empty and we just sat in there and enjoyed the service. Travis was just looking at mommy for most of the night.
Mommy and Travis praying together.
Travis at home in his play palace.
Parenting lesson #1. Wait for baby to finish pooping prior to changing diaper. Who knew that poop is projectile.
Travis' chest after his first 2 surgeries.

A couple of new videos of Travis

This was Travis' last night in the hospital

Travis' first stroller ride out.

Travis likes his play palace toy. Lots of colors to look at.

Thursday, December 17, 2009

Feature Family for Ronald McDonald House

The DiCarlo Family and the Chargers lucky charm

It’s a game plan this burly football coach never expected to pull out of his play book: “coaching” his tiny newborn son in the most important plays of his life. That’s what San Marcos physical education teacher Roger DiCarlo and his wife Nicole are doing in their daily visits to the hospital. Their son Travis was born with the left side of his heart severely underdeveloped, and at two months old, he’s had his first open heart surgery. The family is looking forward to the day they can take Travis home for the first time.

Since Travis’ birth in late October, the DiCarlo's have called the Ronald McDonald House of San Diego their “home away from home.” They can sleep just a hundred feet away from where Travis is at Rady Children’s Hospital, rather than spend hours driving back and forth to their home in Temecula. Nicole DiCarlo, a first grade teacher, can keep in touch with family and colleagues through our Wi-Fi access while Travis is napping in the hospital. She’s just steps away from Travis’ side if she needs to get there quickly.

The DiCarlos are big Chargers fans, and the team’s winning streak started just after Travis’ birth. Every Sunday, Roger puts new Chargers garb on his son. Little Travis may not know it yet, but he’s got the Ronald McDonald House cheering for him—with staff and volunteers doing all they can to take care of the basics for Nicole and Roger so they can care for Travis. He’s even got the San Diego Chargers punting and kicking for him and for other Ronald McDonald House families through our fundraiser,! See page 10 for more info.

Roger says, “We really feel so lucky to have a place like the Ronald McDonald House. The staff and volunteers have made us feel so comfortable as we go through the most difficult time of our lives.” The DiCarlo's have a blog you can follow for updates: We’re rooting for you, Travis!

“It is so nice to be able to focus on our son’s care and not worry about a place to sleep or getting a warm meal.” –the DiCarlo's

Link to the Newsletter

Home Pictures and Albums

Our life is starting to become a new type of normal. We have given Travis a bath, went for a walk, and tomorrow we are going to take our first trip out. (Doctor's appt.) We are starting to get organized with his medications, feedings and his night care. Nicole is so organized with everything she does. She made up a medication schedule that makes giving his 7 medicines much easier. She also made a worksheet for us to keep track of his feeding, sat levels, poops, and temperature. The doctors did not ask for that information, but we feel like it is a valuable tool for us to keep Travis on track.
Have a great day and thanks for following our special boy.
Pictures from the last couple of days at home.
Travis all ready for his first stroller ride with the dogs.
The DiCarlo Family (Roger, Nicole, Travis, Vinny, Zee)
Mommy in control.
Daddy got his turn to take the lead.
Travis got his first real bath at home last night.
Travis checking himself out in the mirror.
Mommy and Travis after a successful first bath.
Travis enjoying his new swing after another great day at home.
I decided to put some more photos on a photo album, just in case you can't get enough of our little man.

Wednesday, December 16, 2009

Home Sweet Home!

Those words have never meant more to us!

Travis is home. He was released from the hospital on Monday around 2:30pm. We knew we were probably headed home that day since around Friday but we did not want to tell anyone for fear we would jinks ourselves. Anyway, that morning we were waiting for final word from the doctor. 8 rolled around...nothing. 9 rolled around....nothing. At 10, I finally went out and found the doctor and said "so, what's the word?" He said that from their end we were good to go. We just had to wait for Kaiser to get the medications ordered and we had to wait for the delivery of the pulse oximeter (a machine that is attached to T's wrist and measures his heart rate and oxygen in his blood when he sleeps). The pulseox came around noon. Then we had to go over medication instructions and discharge info with the nurse. At 2, the nurse said "you're free to go". Roger and I almost cried....tears of joy and anxiety all at the same time! Roger took off Travis' heart leads and we loaded him into his car seat (see pics below). We had to drive over to Kaiser to pick up the meds on the way home. Travis did not like the car ride at first....he was hungry. So, I fed him a bottle ad lib while we were cruising to kaiser.

On to our first "issue". I tried to drop off our prescriptions (7 of them) at Kaiser pharm. The technician told me it would take 2 hours to fill them because they are all compound mixes. We didn't want to wait for two hours with Trav in the car so we asked them to send them up to Wildomar and we could pick them up later (more on this later). So, we were off. We got home without incident. Coming into our house was very strange. We had so much stuff packed in our car from our room at the McDonald house. We took turns holding the baby and carrying in 50 million bags. When the dogs came in they were not sure what to think. To be honest they were more excited to see us. They didn't really care about Travis....they just wanted attention.

The grandmas were our first visitors. They both, of course, were very emotional. It was cool to watch our mom's hold our baby. We did not want too many visitors that first night so they did not stay long. While Roger's dad came over, I ran to get the prescriptions. Keep in mind it was 8:30pm and they were faxed over at 3:30. When I got there the pharmacist said they were having trouble with them because two of the meds they did not have in stock (the 2 HEART MEDS!!). He said they had them in the Riverside pharmacy. I had a major meltdown at that point as he needed to take one of them by 9:30pm at the latest and I was PISSED that no one had called me to tell me that they were unable to fill it. The pharmacist saw my emotion and said he would drive to Riverside to pick them up and come right back. While he drove, I contacted the cardiologist to ask if he could take it later than scheduled. The cardiologist told me to relax and that it would be fine. I, however, could not stop crying. I was just full of emotions after all we have been through. So, I finally made it home at 10:30pm. We gave Trav his medicine and headed upstairs to get ready for bed. Roger and I decided we would trade off on the feeds. We turned on the heart monitor only to find out that the company sent us a sensor for an ADULT. It could not fit on his tiny little hand. ARGH! We tried to jerryrig it to work but it kept alarming every five minutes. SO, we ending up taking it off. SCARY! So, it was a pretty sleepless night for us. Travis, however, did fantastic!

Roger is working 1/2 days this week (then has two weeks off), so my mom and his mom have been visiting and helping get laundry and stuff done. Yesterday, Roger was able to get the right sensor for an infant and last night the machine worked well! We got much more sleep last night. It was so nice to sleep with our new little family in our own bed, with clean sheets. AWESOME!

When we left the hospital, we asked if there was a reflux medicine that tasted better because Travis hated the prilosec......They switched him to Zantac and we tried it. It isn't working b/c Travis has been eating a little less and has barfed for the first time since we started the prilosec. Anyway, after a call to the doctor (and another trip to the pharmacy) we are going back to the prilosec. So pray that it helps his tummy and he gets his appetite back in full force!

As for much as we would LOVE to see everyone right away, we have to think of Travis first. Travis' immune system is compromised due to his heart condition. The time period between this surgery and his next (late Feb to late April) is his most critical time. We HAVE to keep him away from germs. Our house is now looking much like the NICU with sanitizer at every turn. Because of this, we need to limit visitors. Sorry! We want to see you but you may have to wait to meet our little Bug. His grandmas even HATE the fact that they can not kiss him on his face or hands (we can't either). Trust me, I would LOVE to show off my adorable son to anyone and everyone. I dream of it actually. But, we just need to hold off on that. We hope you understand. We will try to keep posting pictures so you all can stay a part of his life. Please continue to keep in touch. Roger or I could meet up with you all for lunch or whatever (just without the baby). :)

You can definitely tell that a baby with medical needs lives here....lots of syringes, medicines and the monitor...but, not as scary as I thought it would be. Not to mention all the baby gear that everyone bought for us at my showers. Travis is a lucky little guy. :)

More later.......Love to you all from us all!

Tuesday, December 15, 2009

Pictures from 12/14/2009 - Discharge Day.

Travis had a wagon ride to get an X-Ray prior to discharge.
Go faster mommy, go faster.
Mommy giving Travis a bath before leaving.
All Clean!!!
Daddy so excited to take Travis wires off.
Travis on his way to the car. Another fun wagon ride.
This world is kind of crazy looking.
Here is one of the greatest moments ever.
Daddy, Mommy, and Travis leaving the hospital after 52 nights.
Travis sleeping after car started moving.
Mommy walking Travis up to the front door.
Success....we made it.
Grandma's sharing a special moment at home.
Our dog Zee wasn't as excited about seeing Travis
Our other dog Vinny wasn't thrilled either
Grandpa got to see baby Travis for the first time.
Travis was wore out after a long day of getting kissed.
Its almost Bedtime....So glad to be home.