Thursday, January 27, 2011

One Thousand.

That's the number of times I have started to write this post only to highlight every word on the page and hit delete. Yesterday morning was the most defining moment of our lives. The words of that cardiologist have lingered in my mind and my heart. It was the hardest day of our lives and this journey has only just begun. Here's a little breakdown of what happened for those of you wanting to know.

Yesterday morning Jonathan and I met with a pediatric cardiologist from Riley Hospital. His name was Dr. Robert Darragh and he was a tall, kind man with a Butler Bulldogs tie on. He walked in the room, introduced himself and started the echo of Lukas' heart. We laughed a little about how little Lukas was moving all about whenever he thought he was getting a good picture and was about to tell us what he saw. When little Lukas finally started cooperating, Dr. Darragh changed our lives forever when he told us what he saw. Very beautifully he explained that there appeared to be what he called a "sizeable" gap in the septum of the lower ventricles of Lukas' heart. He explained to us that when that septum forms it should be a continuous, uninterrupted line of tissue. There should be no gaps, holes, or missing pieces. In Lukas' heart that hole exists. He then went to Lukas' aorta and showed us how it wrapped around and how the aorta forms and functions. He did the same for the pulmonary artery. He told us from what he could see, Lukas appeared to have a defect called truncus arteriosus. Essentially, his aorta and pulmonary artery did not form correctly during those early stages of development. His pulmonary artery and aorta are basically one large connection instead of separate ones. Rather than being on opposing sides of his heart with separate valves like you would find in a healthy heart, these two arteries share the same "trunk" and the same valve. He went on a little further to explain exactly what truncus entails and the repairs that are generally required.

Comparison of a normal heart vs. a truncus heart (images courtesy of the American Heart Association)

When he was done, he asked us if we had any questions. I had a million, but my head was swimming and at that moment I couldn't muster a single one. Jonathan chimed in asking about limitations and Dr. Darragh explained that physical limitations really depended on the successful nature of his repair. Of course, heavy contact sports are out of the question. Being the hockey loving gal that I am, I immediately said "well there goes hockey" which was met by some smiles and laughter as Dr. Darragh said something along the lines of "no, definitely no hockey in this little guy's future."

Then, Jonathan asked the question that I knew was on both of our minds. He asked about what the repair would entail. Our world crumbled into a million pieces as Dr. Darragh explained that this would be a major operation. It would require open heart surgery when Lukas is around 3-4 weeks of age. During this operation, they will have to stop his heart and place him on a bypass machine. They will sew a patch over the septal defect (the hole), which will close and separate the left and right ventricles. From there, they will separate the aorta and pulmonary artery. An artificial pathway will have to be created using conduit and an artificial valve connecting the right ventricle with the upper portion of the pulmonary artery. This will create a new, complete pulmonary artery. Then what was once the single artery or the "trunk" will be reconstructed to form a new, complete aorta.

(image courtesy of the American Heart Association)

Dr. Darragh stated that of course they would want Lukas at Riley for monitoring before, during and after the operation and that he would not be the one performing the surgery. He stated it took a great deal of knowledge and skill to be able to complete an operation of this magnitude.

I was then told that my prenatal care would be transferred to Indiana University Hospital in downtown Indianapolis, where I would now deliver and that the remainder of my prenatal care would transfer to a perinatologist. Dr. Darragh stated that because I have had normal deliveries in the past, there should be no reason this delivery would be any different. They simply want me under the watchful eye of a perinatologist and pediatric cardiologist and they wanted to know that should something come up during the course of delivery or afterward that Riley would be right there and Lukas would not have be transported via ambulance or other means. Dr. Darragh went on to tell us that they will likely keep Lukas at Riley to monitor him for at least 7 days after the delivery, depending on how things look. From there, he will simply come home with us until it is time for his first operation.

Jonathan then asked about what after the operation would like look. How long he would be hospitalized and what kind of after care we would be looking at. Dr. Darragh stated that the minimum time he would be in the hospital after this operation would be 10-14 days. Following the operation, Lukas will be on a ventilator for at least 1-2 days and he will be in the ICU during this time. Depending on how soon they can take him off the ventilator and how long it takes him to begin feeding well, etc. would determine the length of time he would remain grounded at Riley. Dr. Darragh then went on to tell us that during the first year, Lukas would visit the cardiologist quite often and that after the first year we would be receiving the majority of our care through our regular pediatrician, only seeing the cardiologist once or twice per year unless something came up in the meantime. He then told us when Lukas is 5-6 years of age, he would have to undergo another operation to replace the valve in the "new" pulmonary artery. The valve initially placed in the first operation will be a valve to cover the needs of a young, developing heart. At 5 to 6 years of age, those needs change and a larger, adult size valve will be placed. This valve generally only lasts 10-15 years before it will need to be replaced again, but this varies from person to person.

At the end of the appointment, Dr. Skannal said that she would get in touch with Dr. Bemenderfer (my current OB) to discuss the transfer of my care to IU. She asked if we had any questions and whether we needed a few minutes alone. We said we would appreciate that and she escorted us to a conference room. She stated that when we were done, she would make an appointment in two weeks for another echo of Lukas' heart. Jonathan and I walked into this room and when the door closed behind us, we wept and held each other. The only words we could muster in those few moments amongst tears and Kleenex wiped noses was how scary this is and how frightening open heart surgery is. We composed ourselves enough to walk outside and make our second echo for February 9th. Then, Dr. Skannal told us we would be in her prayers and we walked through the doors I had prayed we would never have to enter in the first place.

It is tough to put these Earth shattering emotions into words. Nothing in this world could ever even begin explain what we are feeling right now. I used to send Jonathan these blog entries, articles or stories that I had seen from various folks and tell him there was simply no way I could imagine being in those shoes and how terrible that situation must be. Now we are the ones in those shoes living those stories that no one hopes they ever will. This is our reality now. Yesterday gave life a new meaning. We realize that those mundane things we found ourselves complaining about or longing for no longer matter. What matters is fighting for the life of our little boy and praying that we will see him into adulthood. For now, we have to live in the present and take each day a step at a time. Right now we just need to concentrate on putting one foot in front of the other. So this is where our new story officially begins. Its not that we are rewriting the past, but rather forging a new future. Its going to be a long, hard road, but we will get there and we will be better and stronger for it.

Lukas' face and hands - he was waving at us
Lukas' tiny little feet

And to our family and friends, you will never know what your love and support has meant during this time. You had complete strangers praying for our boy and your words are helping to mend this broken heart. It is you all that are carrying Jonathan and I through this and it is you who will bring us out the other side. Please continue praying and thinking of our little Lukas.
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19 comments:

  1. I could not imagine going thru this. Reading this brought an ocean of tears to my eyes.
    I will continue to pray for your family. And if you guys need anything at all please let Brandon and I know. I have faith that Lucas will be a fighter.
    -all our love, Ashley and Brandon

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  2. Christie, I know how scary this is right now. I can tell you from first person experience finding out you/someone you love has a serious health condition makes your world stop spinning. But I promise, this will make you stronger. The best part is that we will all be with you every step of the way. I love you and your family christie. Remember I am always here any time day or night if you need to talk.

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  3. Hey sweetie, it's Liz, aka Lizluvstww. First, I'm sorry this has become your reality. Like you said.....these are the blogs I can't imagine living out what you're going through. It sounds like you have a great team of dr.'s on your side. You'll also have so many of us praying for healing! In the meantime, you're teaching each of us to not take anything for granted!

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  4. I'm so sorry, Christie :( I'm sending up many prayers for you & your family throughout this difficult time. Lukas is a fighter and I have a feeling he's going to lead a very healthy life after all these hurdles are crossed. Much love sweetie (((hugs)))
    -Angie

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  5. Christie-
    I am thinking of you and your family. Little Lukas is a fighter and you all can do this!
    Katie (dec 08)

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  6. Lisa Lugar, Christie's mommyJanuary 28, 2011 at 1:41 PM

    To my wonderful little girl, it's your mama bear and Lukas's granny. First I must say this site is beautiful and I don't think I have cried this much since saying good-bye to the best man I have ever known, my dad and your pappy. Little one, please know Pap and God are keeping their healing hands on you and Lukas. Please hold little Lukas in your palms and pray with him. God and Pappy will hear those prayers and heal little Lukas. He is going to be perfect and someday we all will watch him graduate from high school, college, and someday we all will watch as he takes a bride into his life. Christie, your mommy loves you and all your beautiful little boys. I love your big boy too, Jonathan, he is a wonderful daddy as you are a wonderful mommy. Lukas is so lucky to have you as his mommy, Jonathan as his daddy, and Riley and Hayden as his two older brothers. Life is beautiful and every second is precious. I promise God gives his word to us that everything will be "just fine". Believe in God, believe in your self, and believe in Lukas. He will become a great leader we all will follow. His game will be as powerful as hockey. His game is called life. We all know the powerful gifts life has to offer. Pappy will watch over the two of you, he always loved his sugar doll. I love you Christie and I will always be on your side forever. I love you! Love always and 4 ever. Mama Bear.

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  7. As a mom to another Lukas this story just completely touched me. You'll be in my prayers.

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  8. I found your blog through Young House Love's tweet. As a mother, I can't begin to imagine what you're going through and how you must feel. I hope you find comfort in God and know that many people are praying for you, Lukas and the rest of your family.

    I will post your button on my blog in hopes that more people will read your story and send lots of love and prayers your way.

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  9. Thank you all so much for your beautiful comments. They mean so much!

    Anna and Hollie: Thank you for stopping by and for your prayers for our beautiful little boy! That means the world to me!

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  10. Hey Christie, I got your blog from your mom. I just want you to know you and your family are in my thoughts and prayers. Miracles do happen, so, just believe in the LORD and everything will work out. Please keep me informed about Lucas's condition and I will continue to pray.

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  11. Lisa Lugar, Christie's mommyJanuary 30, 2011 at 4:21 AM

    Sugar doll, I feel God's work. He is working a miracle for Lukas. He will be big, beautiful, and healthy. I love you Christie. I love you Lukas.

    Love Always and Forever

    Mama Bear/Granny

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  12. Lukas and your family are in my prayers. CHeck this out http://bowensheart.com/ to read about a similar family's journey.

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  13. Hi Christie! I am a mama of a post cardiac child! My twin boys were born at 30 weeks because my lil one was having difficulties. 4 holes were discovered post birth and he was in the hospital for 6 weeks. then when he turned 4 months exactly, he went in for his open heart surgery (s). we were told he would be in 10-15 days, and he was out in 8! from one mama to another, you can do this. trust me, it will be one of the hardest things you will ever go through, but, with lots of prayer, you will get through it. they are fighters! my son is now a healthy, silly, fun loving, smart 7 year old who loves swimming, building, climbing, reading, and snuggling! he is our miracle. know that i will be praying for your miracle baby. you will get through this and so will he.

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  14. Hi, I know you don't know me but I found your story through Centsational Girl's blog. I also had a child born with a heart defect. He had a VSD. My heart goes out to you because even though his defect was the "most common" of the defects it was very scary and very difficult to have him go through open-heart surgery. However, I can now look back and see that it brought us closer as a family and to the Savior. You will be in our prayers.

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  15. My son had a VSD repair at one year. I wish they had been able to do it sooner. This was 25 years ago(he just celebrated his 26th birthday!) and they have made such strides in this surgery. You will be amased at how quickly your son will recover and grow. It is stressful, but you will get through and be happy that you were involved and educated yourself about what will be happening to your son. Good luck, I will be praying for you all.

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  16. Just stumbled upon your blog today from someone mentioning it on twitter.

    Just wanted to say that I'm an infant open heart surgery survivor - I was born with two holes in my heart as well as many other medical problems and had two different surgeries before I was 3 months old. I spent the first year of my life on oxygen (like I said, I had many medical problems beyond just the heart issues) and today, I'm 28 years old and perfectly healthy. I have no restrictions and other than scars, you'd never know about my troubled infancy.

    Technology has came a long way since then. Lukas is going to come through this with flying colors. You guys are in my thoughts. Hang in there!!

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  17. Lisa Lugar, Christie's mommyFebruary 6, 2011 at 4:05 PM

    Lukas the world is praying for you and God and his son Jesus are working a miracle to repair your little heart. I have faith in you my precious little grandson. You are my rainbow and you will bring so much happiness into our lives. Your little smiles will shine with all the colors of that big beautiful rainbow. I love you Lukas, I love your mommy, I love your two big brothers, and I love your daddy. God is watching over you little one. Granny is praying everyday. Can you hear my prayers? I know you can. Keep smiling and waving to us. I love you!!!!
    Love Always and Forever and Ever,
    Granny

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  18. Hi, I just left a post under our babycenter post and just started reading your blog and saw the comment about not being able to play hockey well ironically enough a good friend of my aunts son has TA he is 23 and he got the number one scholarship in the country a few years back to play HOCKEY!!! He's a goalie and part of a study now that he got stents instead of more open heart surgeries so had toi put the hockey on the back burner for now. So never say never:)

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  19. Christie you are such a strong, trusting person and I know how this is and will be. I know that lukas is coming very soon and I know that it may be stressful having Hayden and Riley running around. I know that it might also ease your spirit to have them there with you but if you ever need someone to watch them call Kim, she loves to watch kids and I know kailee LOVES to watch them. She loves little kids and they really love her too. Kim is pretty much a professional, I don't know how does it, I've raised three kids and those two have passed me up by a lot. I love you and I'm praying for you, oh and P.S. the mashed bananas really aren't that bad. I think the boys would love them!

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