Pictures 10/31/2009

Halloween Costume 2009
Looking at Mommy

Beautiful Baby Boy Travis

DiCarlo Family - Halloween Night 2009

Video 10/30/2009

Difficulties

When we started this journey I tried to convince myself that Travis would be one of the "easy" cases and that he would have little setbacks or complications. I knew this is rare with HLHS babies but I prayed and prayed about it. Although he is still strong for as sick as he is, it turns out he does have an infection. Cultures from his respiratory tube came back with some yeast growing on them. The started him on general antibiodics until they can pin point the exact bacteria. The difficult part in all this is that his big surgery will be postponed another couple weeks. They said he could probably have it in one week but Dr. Lamberti will be in Hawaii for Heart Week. So, if we want HIM to do the surgery it will be two weeks. In that two weeks, they hope that Travis can be moved to the less fragile side of NICU and begin to learn to eat and be fed, be held, and grow stronger for the Norwood procedure. Although I know that this is what HE needs, it hurts my heart to think we will all be stuck here for another 5 weeks at the minimum. I'll tell you the truth...my emotions are not good. I yearn to hold Travis every second. I feel like someone ripped my heart out and wired it down to that NICU bed. I don't know how to control what I am feeling. I don't want to talk to other people here and hear any more stories good or bad. I just want to be home with my lil man, my hubby, and my dogs. Some days I'll feel strong emotionally and have a lot of hope and then we'll walk into the NICU and hear something that was unexpected. I try not to cry when I am there but seeing him react to my voice just hurts more. He needs his mom and dad. Yet he needs these medical interventions. So, we are stuck. Stuck in a place no one ever dreams they'll be. The days all run together and I am constantly panicked that things will go wrong. I have been praying for peace and for Travis constantly everyday. I can just hope God is listening.

Not a good night....

This evenings update is the Travis MAY have and infection. This is definitely not good. This would put the surgery that he needs off for several days, maybe weeks. The doctors were concerned with 2 things today. They were concerned with a culture test that they took this afternoon showing a possible bacterial growth (Which means infection). The other concern is the redness around his chest opening. You can see a little bit of it in the pictures below. They think it is just from the tape that is covering it, so they redressed the opening. Hopefully we can get some of these questions answered tomorrow. In the meantime, we are more stressed.

Other unfortunate news:

Both Nicole and I are heartbroken for a family we met here at the McDonald house. We spoke with a guy in the elevator one day because he looked like he needed a friend. He told us about his son who has cancer...everywhere. We've been following up with him when we see him. Today he shared that he has to let his 9 year old go, pull the plug. Nothing else to be done. Say a little prayer for Xavier Hernandez as he joins the other angels.

For a place that has so many miracles happen every day, it is hard to see past the sad stories and upset faces. Very draining emotionally for both Nicole and I. Especially because we are both teachers and are invested in the lives of so many children.

Makes you realize you need to treasure every second that you have with your family.

Good Night

Pictures 10/30/2009

Sleep is good

He's on a lot of medicine.

No news is good news

We haven't really got any bad or good news. They are trying to ween Travis off of the ventilator, but want to take precautions in his pain relief. They are not rushing into anything and that is okay. The Doctors are waiting to get his culture tests back and that can determine if he still sick. He looks relatively good and has been stable the couple of times we saw him. Nicole and I whisper when we are around him because we do not want him to wake up and get excited. We also are limiting amount of time that we touch him, because of the same reason.

We are trying to stay on the mantra of they are doing what it best for Travis.

As said many times to us in the past week. Travis is the Boss. We as new parents are finding that out really early.

Take Care

Roger & Nicole

TEAM TRAVIS

Travis has so many people thinking about him and supporting him. Our TEAM goes way beyond just family. Our team consists of a community of people from colleagues, parents, friends and so many more to name.

All of the love and support we have got from so many people are part of the TEAM. This little boy has inspired me so much already in just 6 days. I can't wait to see what his next feat is.

GO TEAM TRAVIS GO

Pulmonary Artery Band Surgery

Temporary Fix:

Pulmonary Artery Band

Doctors place a band around the Pulmonary Artery to restrict the blood flow going to the lungs called a Pulmonary Artery Band.

This limits the amount of blood sent to the lungs making it less congested. However, as your child grows he will need more blood sent to the lungs which is limited by this Pulmonary Artery Band.

Norwood Operation

First-Stage Operation:

Norwood Operation

The first stage operation to fix the Hypoplastic Left Heart Syndrome defect consists of transection of the distal main Pulmonary Artery and transection of the Aorta, then this is attached to an incision in the Aorta.

To keep the blood flowing to the lungs a shunt is constructed from the newly formed Aorta to the main Pulmonary Arteries.

Great Website on Heart Defects and fixes:

http://www.childrensheartinstitute.org/educate/defects/hypo2.htm

WARNING

WARNING! The post-surgery pictures and videos 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 recovery pictures which are less graphic.

We understand that he needs this surgery to survive. It may not be easy to look at, but we feel that if your reading this blog that you might want to see this very important step in his journey.

Thanks for the love.


Click on the link below to skip the pictures
http://dicarlofamilyupdates.blogspot.com/2009/10/out-of-surgery.html
































http://www.teamtravis.info/

Post Operation Video - 10/29/2009

Pre and Post Operation Pictures

This is Travis prior to his P.A. Band Open Heart Surgery

Pastor Mark Kuhn who married us came this morning for prayer and support.
We are so thankful that he came and gave blessing to our baby boy, surgeons, nurses, and

mom and dad.

Post Operation with a few more tubes.
Travis is actually really comfortable and doing well.

Out of Surgery

We got the call that Travis was out of surgery and rushed over to the NICU waiting room to talk to the surgeon. The surgery took only a couple of hours and were anticipating good news. Dr. Lamberti said that everything went well and according to the revised plan. Travis is recovering in the NICU. We only get to see him 5 minutes at a time every hour. He has alot more tubes, wires, and machine attached to him, but he looks peaceful. Hopefully in the next few days they will be able to determine why he failed the gas tests. Then the Norwood Surgery will be scheduled according to his strength. Dr. Lamberti said that the Norwood would go much easier if he can recover well from this.

This just puts our timeline for baby Travis to come home back further than we had hoped.

Thank you to all of you who took a second in thinking about our precious little boy Travis. We definitely feel the love and support from all over.

Roger & Nicole

Illustrations of what HLHS is and surgeries. Thanks to the Dunn's and Grace
http://www.heartofgrace.net/WhatIsHLHS.html

Setbacks

We weren't sure how we were going to handle todays surgery. Nicole and I decided to spend the night alternating trips to NICU spending time with Travis. Nicole got to hold him again in a chair this time and it was a good night. I was on the last shift which was from 1:30-4:00am. Travis was doing pretty well all night and when I left him at 4:00 he looked good and ready for the big day. Nicole and I got up at 5:30 to go meet with our pastor Mark Kuhn and went to pray with Travis. We were there with him for about an hour and half. We then saw Dr. Lamberti trailed by his cardiac team of 12 or so (too many to count). He then came and told us some news that Travis' labs at 4:00am showed that he was in some distress and possibly sick. He discussed how that would effect the Norwood surgery that was scheduled. He said he wanted to err on the side of caution and he wanted to perform a surgery called Pulmonary Artery Banding and schedule the Norwood for a further date. The want to be able to determine why his gas test became irregular at 4:00 am. We can't help think that his poor gast test correlates with us leaving his bedside. Travis has been doing so well up to that point and it is hard to imagine that we did something wrong in leaving him alone and stressing him out.

We decided to take Dr. Lamberti's advice an have him perform the P.A. band procedure today. He did mention that if all goes well that the Norwood Surgery would become a lot easier for him to perform and less stress on baby Travis. He actually said that he would prefer to perform the P.A. bands on all HLHS babies, but would rather not put the babies under another open heart surgery.

So we are waiting in our room waiting for the pager to go off. The surgery will only be 3-4 hours in lenght.

This has been an emotional morning for both Nicole and I and will continue to need your support and prayers.

Here is a link to the Hybrid Procedure which Travis is going through right now.
http://www.nationwidechildrens.org/gd/applications/controller.cfm?&page=4772

Videos of 10/28/009

Pictures 10/28/2009 - An Amazing Day before the Storm

Nicole got to hold baby Travis for the first time ever. It was special.

Nicole just mesmerized by her work.

EMOTION

Daddy got some much needed time too.
I can't believe how amazing it feels to feel him in my hands. Indescribable!!!

Travis got some new socks. I chose 25 because we want him healthy enough to come home in 25 days.

LOOK!!! No breathing tube. Travis is breathing all on his own prior to surgery.

We say Travis this morning put into a new position. On his belly. Pretty Cute.

Deja Vu - Ryan DiCarlo

This is me 25 years ago with my younger brother Ryan He went through open heart surgery with Dr. Lamberti to fix a A.S.D. and some other issues. Dr. Lamberti will be the same surgeon that will perform Travis' surgery on Thursday. Ryan is thriving now and full of energy. Lets pray that Dr. Lamberti and his team can perform another miracle.Me and my Brother at the same place my son will be on Thursday.
This is Ryan post operation.

Eyes Wide Open Video

Videos of 10/27/2009

Daddy took his blanket off so he could get a video. Dang Paparazzi!!!

Pictures 10/27/2009

Travis is not so sure about this crazy place.

He had an EKG earlier in the day. It looks scary, but its just tape and wires.

Guess whats missing? Yep, your right my respirator is off.
Travis got extubated today and was breathing on his own for the majority of the night.
This is a sign that he is strong. He will need that strength to get through the surgery and
post operative care.

Eyes wide Open...

He had his eyes wide open for 30 minutes looking around. First time since his Birth Day.

Videos of the last 3 days

10/24/09

10/25/09

10/26/09

Visitors and the Latest

A lot of people are asking the questions: do you want visitors and what can we do? So, I thought I'd answer those. We would LOVE to have visitors all the time. Unfortunately, you can not even enter Children's Hospital unless you have a green armband stating you are the parent of a patient. Therefore, we are only able to see visitors when we leave the NICU. They kick us out every night from 6:30-8 for change of shift. This is usually when we go eat. If you wanted to visit us, it would have to be during this time frame and be arranged in advance so we can plan for it. Also, because Travis' immune system is very compromised, we can not have visits from our little friends (any kids) or anyone who may be at all sick. To answer the second question...what can you do? Well, Roger and I have thought of one great thing we could use...refrigerated meals to reheat for lunch and dinner. We do have a little fridge here at the McDonald house to store food.

Today was a tough one emotionally for me. I think all the things that happened in the last week and the reality that our little one is having open heart surgery on Thursday hit me really hard. He is such a perfect little angel, it breaks my heart to think that his little heart is imperfect. He looks like I could just grab him and run out of there with him and he'd be fine. Even though I was a mess, Travis actually had a really good day. He tried to open his eyes to see us this morning when we got there but he is so swollen that he only got one eye open. He knows our voices and responds with tiny little movements. He looks so peaceful sleeping all day. He loves to sleep with his arms up by his face (like mommy!). His lungs are working so well that they are thinking of taking his respirator out for a few days (until surgery). He keeps trying to breath over it. That is a really good thing! We read him a few stories today and held hands quite a bit. I love holding his little toes. Daddy likes to hold his hand. He has a little half mohawk now because of the PIC line IV they had to put in his head (they tried to get it into a arm or leg but no luck). It looks really bad but Travis doesn't seem to mind. Daddy got the honor of changing a diaper today (no poopy ones though!). We tried hard to get a little family picture but the lighting is really bad in there and half the time you can't see Travis in the pictures. We'll try again. And one last thing...he has MY ears. Yay, proof that he is part mine!

Heading to bed now...we have a meeting with the surgeon and doctors tomorrow to review the plan for Thursday.

The DiCarlo Family

FAMILY

Pictures from 10/26/2009

Holding hands with our little miracle.

I felt like a Daddy. I got to change his diaper today. It's the little things these days.
Travis and his little bear
Our little man with his half mohawk thanks to the P.I.C. line.

This is the Life with a Cardiac Baby

The good news today is that Travis is doing pretty well. We were under the assumption from the conversation I had with the cardiologist that Travis would need an immediate surgery Monday morning. This was based on his condition at birth and all of the studies done in the first day of life. This morning the cardiac team of doctors (10 or so that I saw) had a meeting to discuss the plan for Travis. They now think that he is stable and can have surgery on Thursday like originally scheduled. This is good news, because Nicole and I can bond with him a little more before the big day. But as told to us several times in the past 3 days these plans can change any minute for several different reasons. Including Travis' condition, babies that need immediate surgery, and the funny one is Dr. Lamberti's whim. Dr. Lamberti is one of the best doctors in the world and he does stuff based on his years of knowledge.

Today was also special because Nicole got to spend time with Travis. She got discharged from the hospital and rushed over to Childrens to see him. We spent most of the day with him and his Nurse Denise. It was special to see Travis and Nicole bond again. He was the most active I have seen him in his 2 days at Childrens. He tried to open his eyes to check us out, but his poor little eyes are swollen from all of the medication that he is on. He definitely could recognize her voice and showed a lot different movement that he has not shown before.

We had another long day and look forward to what tomorrow brings...

Big Day with Mommy

Nicole reuniting with our baby boy

Nicole loves his peach fuzz on his back...reminds her of Daddy.
We are not allowed to hold him because of all of the I.V.'s, but the Nurse had Nicole help her fix the bed and she got to lift him up.

Nicole changed Travis' diaper for the first time...many more to come.

Nicole and Travis sharing a moment

Teaching Travis Football and Talking Sports

They let Travis wear his Charger bib for the big game today. The Chargers won with Travis being one of their newest fans. I also was talking to him about the San Marcos Varsity Football team on Friday night as well. I was getting updates via text while sitting by his bedside. Travis and I were excited to hear about the great win they posted in league against Westview. Nicole is worried that all I talk to him is about sports, but that is not always true. I just don't talk to him about sports, I read to him as well. I was reading him the new issue of Sports Illustrated this morning. So I read and talk to him about sports already.

Go Knights....Go Chargers

Pictures from 10/24/09

Pics from his first field trip to MRI

Lots of Medicines and Wires for our little man


Had to change the other hat. Got him a Pumpkin Hat for Halloween

Getting Ready for Chargers game on Sunday

Things went well with the MRI

Travis is doing well after the MRI. Roger said he was a trooper but really tired after it. One of the doctor's gave him a little Halloween blanket as a present. Tomorrow we have a consultation with the surgeon Dr. Lamberti. His first open heart surgery is planned for Monday. The doctor's here and going to really try to get me out of here tomorrow so I can spend time with him before Monday morning. I'll keep you posted. I'm definitely being a good patient so I can get out of here.

Baby Travis' Birth Story

As you know we were originally scheduled for an induction tomorrow, Oct. 25th. However, we went in for our weekly appointment with the perinatologist and she said my water was a little too low for her comfort level and said that "today is the day". Of course, we did not bring any of the things we needed with us because I was sure it would NOT be the day. Anyway, we were admitted at 10:30am on Wednesday (10/21) and I was given 6 doses of cervix softener (one every four hours). That process was long and boring...and only opened my cervix to a three. I was allowed to shower before they started giving me pitocin...felt so nice. Then a little later my water broke...so much for feeling clean. The pitocin was given at 8pm (10/22) and the contractions got more and more intense fairly quickly. They were able to get an epidural in around midnight and I've never been more happy...I cried tears of joy! Labor is NO JOKE. They had to try 5 times because I've had spinal surgeries and there were only a couple spots in my spine that they could get it in due to my spinal surgeries. Finally, at 6am I was 10cm and ready to push. I pushed from 8:00-11:45. His heartrate was wonderful through the whole process. However, the doc said his head was turned in the wrong direction and he was kind of stuck. So, c-section was the option. Because I had pushed for so long they had to make a longer incision and it took some work to get him "unstuck" from my pelvis and push him back up. He came out looking pink and healthy....6lbs 2oz, 18 inches long. He was born at 12:57pm on Friday, October 23rd.

They wisked him off before I could touch him or get a good look at him. He was transferred to Children's Hospital before I was released from the recovery room but they did bring him by on his way out and I was able to say hi and touch his little face. Roger is staying there with him and I am here at a different hospital for a few days. They are running tests on him with a possible surgery date of Monday.

The teams at both places have been really great. The L&D nurses were great and the doctors have been very kind. We had two real special labor nurses...Noelle, Dolores and Jan. They were so wonderful!!! I am trying to walk around a lot so I can get out of here and be there ASAP. It is so very hard to be here. Please keep the prayers coming!! Travis is headed to his MRI right now. We'll post again later.

So hard...

...it is so vey hard to be here stuck at a different hospital when your little newborn was wisked away so quickly. I barely had 5 mins with him...and I only got to touch his feet and little sweet cheek. I feel very heartbroken. I am trying to be strong and tough so I can get out of here quicker. It feels so unreal that he is even here because I haven't got to spend any time with him. Feels like a crazy dream.

Roger has been with him and talking to him a lot so he knows someone is there. I can't wait until I can talk to him because dad is just talking about sports, I'm sure. My good friend Jen printed out a bunch of pictures for me to hang in my room here and I just sit here staring at his sweet little face....he is definitely Roger's baby. If I wasn't cut open and sore from pushing, I'd question my involvement.

Roger says Travis is going for a full MRI today around 2:30pm to check how everything is working. So, pray for some positive news from that. And pray for all three of us to have the strength we need over the next few weeks. Roger needs strength to be at RCHSD making decisions for Travis, I need strength to heal and get over there soon, and of course...Travis needs strength for his surgery and to know we love him so much!!!

We will update the details of what is going on Soon

Tired, Tired, Tired.

Will update later.

Travis arrived at Children's Hospital San Diego

I got to spend some time with Travis tonight after leaving Nicole. Wanted to post some video and pictures, before going to sleep. He is real strong and will need to be to get through his first surgery. (NOTE: We did not provide the hat.....LOL)

Baby Travis during his Initial Exam Photos