Saturday, August 22, 2009

You don't have to understand everything to believe in something.

"As Jesus went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus. "but this happened so that the work of God might be displayed in his life." John 9:1-3"

Thursday, August 20, 2009

Heart of Grace Website

This is another link to a website that a family made for their baby Grace. They have a very good picture section that shares their entire journey through the surgeries. Be aware that some of the pictures are very graphic and scary. The reality of our situation is that Travis will be going through many of these same steps as Baby Grace. We need to prepare ourselves as much as possible for the journey ahead. Even if it means looking at pictures that might not be the easiest for us to view at this time.


Tuesday, August 18, 2009

Notes from Doctors Appointment

Information that we were able to gather from Dr. Tim Degner, Chief of the Pediatrics Department for Kaiser Permanente, Los Angeles Medical Center.

· Should go to full term at all possible and should deliver naturally. No advantage to delivering c-section.
· We want the baby to be as big as possible.
· Come out when baby wants to naturally on his schedule.
· It is improved success rate with the baby being diagnosed in utero.
· Main advantage of delivering in L.A. is having the entire family in L.A. Medical Center
· The outcome of the baby makes no impact on where he is delivered.
· The baby will be going to children’s hospital for the heart surgery (via ambulance)
· Surgery will be done by a heart surgeon. Will be able to meet them a day prior to the surgery to answer any questions.
· The choice of surgeon depends on the exact diagnosis of who will be performing the surgery. It could be a Kaiser doctor or a Children’s doctor.
· Don’t know the success rate for surgery, because we do not know what surgery he will need.
· Overall success rate for babies with a singular ventricle is 50-75% chance to making it through all the stages and getting to age 5.
· Some of the babies don’t make it through surgery, some don’t make it through an illness, because they are to weak to make it through one of these things.
· The older the child gets the better the odds get. So if the child can get through the first year of life and can stay pretty healthy he could have a 80-90% success rate.
· Can’t tell if it is a more positive prognosis or negative prognosis until baby is born and to see his progress.
· The whole process is staged. Things are not happening like an emergency. Not rushing around and doing things in the middle of the night.
· The baby will be born and then they will do an ultrasound to get a better understanding of his diagnosis.
· The things they do to make the baby safe are very stereotypical of the diagnosis.
· The surgery will most likely not be scheduled on a medical need. It is scheduled on what is open or available.
· The process is much more elective process than an emergency process.
· Could have limited time to hold the baby
· Probably not going to be able to put baby to chest like a normal baby.
· Definitely can pump the breast milk and store it.
· Not sure how the feeding will go until we have a better diagnosis of the baby.
· Cord Blood: Does not have much benefit to baby with congenital heart defect.
· Blood Donation: No real benefit of donation of blood. The newborn babies need special blood.
· We can be in touch with the NICU Social worker to get more questions answered about Housing arrangements. (i.e. McDonalds House)
· The baby will have surgery at CHLA and stay at CVICU (Cardio Vascular Intensive Care Unit) until he is stable. Then he will be transferred back to Kaiser NICU once he no longer needs that care.
· CVICU is just for the immediate post surgery care.
· The reason we go back to Kaiser is they will be doing all of the rest of the medical care on the baby for his life.
· General Timeframe for being transferred to Kaiser is 10 days post-operative.
· Most babies that have open-heart surgery in the newborn period will be able to go home 21 days after surgery.
· Home Care: Babies will have to be given medication by mouth and usually nothing more than that. Occasionally the babies will need some other things depending on his progress.
· 1 on 1 care or Day Care? Day Care depends on facility.
· The care at home will be very similar to that of any baby. With the exception of having a lot more doctor visits. Doctor visit do not need to be in L.A. , can be with any Pediatric Cardiologist. The doctor will be checking oxygen levels and weight gain.
· Feeding Tubes sometimes are placed, but try not to use them. Never send anyone home with a nasal feeding tube. They will really try to get the baby to feed orally. The stomach feeding tube would only be placed in after a month if baby is not doing well.
· Dr. Starnes does all of their HLHS Surgeries.
· In a given year at Kaiser, they could send as few as five, and as many as 10. It is different every year.
· Not a 100% that baby Travis has HLHS, but it looks like it.
· Norwood has about a 10-12% mortality rate.
· If it is a different first stage surgery then the mortality rate could be 3-5%
· Circumcision: Because of the aspirin that the baby is on, they typically discourage getting the procedure done. It can be done though if we push for it. Usually have to pay for it if done past 30 days of life. If baby is doing well than we probably can get it done. If baby is not, then they will talk us out of it. There is no medical benefit to having it done.
· Don’t need to see a pediatric cardiologist until baby is out. Not much for them to do.
· Just need to see OB to check for normal baby growth. Same indexes for normal baby is for baby with defect.
· OB Gyn will be the one who will determine if it is C-Section.
· Elective C-Sections can lead to big mistakes, like misdiagnosis of size, dates can be wrong.
· Less respiratory problems if born naturally.
· C-section is not a stress on babies heart.
· CHECK WITH OB about Herrington Rods
· Cannot sleep or stay at surgical unit at Children’s . Can visit 24/7 for short periods of time. Much more restrictive at CHLA.
· Cannot sleep at bedside, can visit most of the time. Need to step out when doctors are doing rounds.
· Not going to have the same doctor during all of the stages of the surgery. It could be several different surgeons. All will be qualified to do the procedure.
· No heart unit at Kaiser. It is a regular NICU.
· Nursing care will be determined by his needs.
· Can bring music or noises. More of those things can be done when he gets better. Blankets, toys, clothes can be brought when he is closer to discharge. (Less tubes) Early phases not allowed. It will become obvious when the time is right.
· Brain Function won’t be able to be determined for weeks or months.
· Heart transplants aren’t really done anymore. Very few will need to have the need for a heart transplant. Maybe 10%.
· He will need a specific medication at birth to keep ductus arteriosis open.
· Pets our not a big risk.
· Since we our Teachers we should wash hands more and maybe change clothing. Washing hands take care of 99% of the germs.
· Subsequent children have 4% chance of having a heart defect.
· Can do some tests to check chromosomal disorder. Can check gene deletion.
· Should be a normal baby delivery.
· We need to get a tour of CHLA and LA Medical Center.
· Dr. Kallin and Dr. Starnes are the main surgeons.
· Have to hope for the best. Got to take it a step at a time. Can’t script it out how the baby is going to do.
· Once the baby is out we can get a better diagnosis and then figure out what the next step is.

A Video About Travis' Surgeon

Monday, August 17, 2009

Heart Poem

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."

Blogs that have good information.

Some of the Blogs that I have read and try to follow... Very interesting to see other peoples journey through this trying time.

Sunday, August 16, 2009

Walking Blind in Faith

I've NEVER been good at walking blind in faith. My mind is too analytical to accept faith on most days. When it comes to religion, I try hard to believe. It's hard for me to accept things that I have not seen with my eyes, held in my hands, or experienced first hand. So, it's difficult believing when things get tough. I have always admired those that are full of faith. They seem so at peace...putting everything on God's shoulders. What I wouldn't give for that ability these days! I'm working on developing my faith and today's message at church hit home...

God's plan was likened to a game of chess. Average players see one to two moves ahead when playing chess. Genius players see the game (8 plays) in advance. The pastor said that God is the genius player...even though it might not feel like it, God has a plan and he is looking ahead at the future. We are the average players...we just have to take things step by step and have faith in God's plan. Often, in chess, players have to give up a move to get the win. The same with God's plan...sometimes we have to sacrifice.

Tomorrow is our appointment with the specialist team. I am trying to have faith that baby T will be fine. It's difficult but we're playing our chess move at a time.

Wednesday, August 12, 2009

Gratitude & Latitude


I am thankful for the strength to get through each day.
I am greatful to have access to some of the best medical care in the country.
I am thankful I have adequate insurance to cover Travis' medical bills.
I am happy to be surrounded by close friends and family who do anything for me
I am thankful for the sports theme in my baby's room that makes me smile
I am greatful for the motherly intuition that keeps me fighting and hopeful.
I love baby kicks.
I love songs that give me hope.
I love my dogs and how they do silly things to cheer me up.
I am greatful for my husband and his strength.

Give me latitude because I'm not always as positive about the future as I could be.
Give me latitude because I often fear the challenges ahead of me.
Give me latitude because sometimes 81 more days is a long wait.
Give me latitude because sometimes I'm angry I don't have answers.
Give me latitude because I'm angry this is happening to us.
Give me latitude because I don't understand how people who don't want perfectly healthy beautiful babies receive them anyways.
Give me latitude because I have no patience for others who are complaining about things that just don't seem important anymore.

Sunday, August 9, 2009

Appointment with Surgeon Team at Children's is set

We have our next appointment set for Aug 17th at 2:30pm. We are nervous and anxious to get our questions answered. Since finding out Travis has HLHS we have met/spoke with several people who have had a child/family member/friend with HLHS. I met one little miracle last night at a friends shower. She is almost 2 and is very vivacious. These stories have been giving us hope to get through this very scary stressful period. I can only pray that Travis has as much luck and strength as these little miracles!!! 70% of the time I am hopeful....30% I am scared to death.

Online stories have also been giving us some strength. We have been finding many pictures and videos of the actual surgery and aftermath (very graphic) online. Although they are ridiculously scary (to think that our baby will be put through this), I think it will help us in the long run be prepared to see our Travis in this condition after surgery.

Our major concerns right now are: financial means, if I can breastfeed, lodging in LA for the 3 month hospital stay (one mom said one parent can stay 24/7 in the room), and if we will have to take extended absences from our jobs (adding to the financial stress). Currently, I plan on being out on my original leave until Feb 1. Travis will need care after his release from the hospital so we need to look into the cost of a nurse/nanny vs. one of us staying home. I get overwhelmed easily by all this so I have been trying to keep myself busy. Roger has been very good at getting info off the internet (I still find it challenging to weed out all the sites). Here are a couple more that we like...

Please continue your prayers....


This is hard to share but we want everyone to know. Unfortunately we got the bad news that we had been praying against. We went on a week and a half ago for the Fetal EKG. The doctors took a long look at his heart and then shared the bad news. Travis has what is called Hypoplastic Left Heart Syndrome with a common atrium. His Left Ventricle never fully developed properly and will not be able to function without intervention. Additionally, his atriums are not separate into two is one by itself. This syndrome happens spontaneously in 1 out of ever 10,000 births. Years ago, it was a death sentence. Fortunately, there is now a well defined surgical approach to his is a series of three complex open heart surgeries spread out over the first year of his life. The first surgery would need to be immediately performed after birth. The surgeries (in essence) will jerry rig his two chamber heart to function as a regular four chamber heart. Since these procedures (called Norwood/Fontan) have only been around for 20 years or so they only know the possible life expectancy of 20 yrs. However, the 20 yr patient is still doing well. We will not know the severity of Travis' heart until later. They are planning to do a full study on August 18th and then we will need to meet with the surgeons at Children's Hospital in LA to discuss delivery (probably will be via a scheduled c-section) and what will happen afterwards. Travis will likely be in the NICU for the first few months of his life and he will need one on one care for the first year of his life. We have so much to figure out. Our heads and our hearts feel so heavy. As you can imagine we are beyond scared and full of grief.

What is supposed to be the happiest time in our life is now so uncertain. It hurts that God has picked Travis to have to go through all this. We just keep thinking how unfair it all is. We are trying to keep ourselves busy. We know you will all be concerned...and thank you. This is really going to be a trying journey. PLEASE keep Travis in your prayers!!!

Here is some more info on HLHS:

Nicole & Roger

To Keep You Informed

I thought we might start a blog so that we could keep everyone updated on appointments and everything related to our family and Travis' fight. Hopefully, during his surgeries and subsequent hospital stays we will be able to update this site frequently. Thanks for reading and continuing your prayers for Travis!!!