Monday, January 31, 2011

A Gift for Healing.

This weekend, my mom bought me a book called "The Twelve Gifts for Healing," by Charlene Costanzo.  In the book, the first gift for healing says: "may you allow fear to soften and melt away." This gift is sticking with me now as I think about that next step down this unfamiliar path.

Book from my mama along with my FAVORITE book in the world...."A Million Miles in a Thousand Years" by Donald Miller

This week has been filled with its ups and downs. Yesterday I went and watched my niece (who turns 12 today - happy birthday Paige!) play volleyball and it was the first time I have left our house since we got the news Wednesday. And it actually felt good. I got to spend a day with my sister, my niece, my mom, my grandma, and my little nephew Trenton (or T-Boss as he is known to many). Starr introduced me to some of the other volleyball moms whom she had told about our situation and who were adding Lukas' name to prayer lists and forwarding on our blog asking for thoughts and prayers. It was just the right dose of medicine for this fearful, aching heart. To be around people who love and support me, even if it was my first time meeting them, was awesome. 

I know this situation is scary and bad, but I know it could be worse in a number of ways. Sometimes I get stuck in the heat of the moment and it is difficult for me to imagine anything being worse than this, but it could be. I know I am lucky in a number of ways and that's what I need to focus on in those heated emotional moments. I am lucky that I am familiar with the hospital where I will be delivering and where our Lukas will eventually receive his operation and care. These hospitals are connected to one another and are less than 30 minutes from our house. Not to mention I have been there a number of times, although for very different reasons. I know what University Hospital and Riley Hospital are all about and I know the brilliant, capable minds who work there. I am lucky to know my baby boy will be in the best hands possible. I am also lucky that the majority of our family lives 5-10 minutes from where we are and that they will be right here in our time of need, and those who aren't will be if duty calls. 

I called my mom earlier because I just needed to get some fears, tears, and feelings out. I told her that I cry more now than I ever have in my life and I told her that I am just such deep griever, which is why this hurts so much. This has rocked my world and sent my life into a tailspin. I know there are hard times ahead and I know what I feel right now is only a fraction of the fear, sadness, and guilt I will feel in the months to come. I know I need to take it day by day. I know that I will adjust and I know that I will learn as I go. Right now, I am still working those steps of the grieving process. I am still taking time for myself to cry, to scream, to bargain, and to pray. I know I need these things and this time to come to terms with the inevitable. To come to terms with my new story. I told my mom that I believe we all have defining moments in life; those things we face which either make us or break us. I just never thought this would be my defining moment. I never thought something like this would be that situation that would make or break me. But I am determined to fight the hard fight and I determined to let the positive win. I am determined that things will work out for the better and that this time in my life will make me, not break me. 

This is what keeps me strong and gives me hope (yes, even Riley's hat head)

While I know it will come in time, I am slowly allowing that fear to soften and melt away. I know it will never fully disappear though. I wouldn't be human if it did. I am scared, but I am also hopeful and everyday I grow a little stronger. I know many more tears will be shed and I know there will be days ahead where I am so scared I can barely move, but I just need to take it in stride and I need to remember that our little Lukas is here for a reason. He is part of my plan and he is making our story all the more majestic. And when the dark starts to creep in and take over I need to remember what brightness and beauty the future also holds. In a few months I am going to meet my son. I am finally going to see his beautiful face, feel the warmth of his skin, see his ten perfect fingers and toes, and I will finally be able to kiss him and cuddle him the way a mama should. I refuse to let fear or negativity ruin that magical first moment when I lay eyes on my third son; my own little slice of Heaven on Earth. My life is about to be (and has already been) enriched in ways I never even dreamed possible. And that is something truly wonderful this uncertain future holds.

Well, off to spend time with my other Heavenly slices now. 

He got a new toy in his Happy Meal today and he was SUPER excited to show it off

Happy Monday to everyone and please continue thinking of and praying for our boy.

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Saturday, January 29, 2011


That's how many weeks we are now as of yesterday.

How are we doing? This is a question we have been asked a lot in the past few days. The truth is, not so good but we are hanging in there. Only a few days have passed since that fateful appointment and already this has been like the worst rollercoaster ride you could ever imagine.  I wouldn't wish it on a single soul. Our emotions pretty much change from one moment to the next. One minute I think I am coming to terms with it only to realize I'm not. Not even close. I try to remind myself that is probably the normal human reaction to this type of thing. I think I am still in a state of disbelief; like I am hanging in a delicate balance between "Please let this be a bad dream" and "Dude, wake up. This is reality." There is not a single second that has passed since we got our diagnosis that I haven't wished for and longed to be able to trade places with Lukas. The idea of him having to go through such immense hardships so early in his life is heart wrenching. Every little kick, flutter, and tumble I feel is a reminder of that and it brings that tide of emotions towards the shore once again. But those little kicks, flutters, and tumbles are pure magic and I love every one.  

I honestly don't know if I am strong enough to do this; to watch my baby go through this. But I believe that things happen for a reason, even if I don't wholly understand that reason right now. And just maybe we aren't meant to understand. I was raised with the belief that no one is handed more than they can handle, but boy are those limits being tested now. At the end of the day, I lean on my faith. I lean on hope. I lean on my family and friends who have been there for me every second since this began. I lean on what I have to in order to make that next step forward. On that note, my beautiful sister sent out an e-mail to her friends as well as a mass e-mail to her coworkers at Wishard asking for their thoughts and prayers for our boy. It moved me hard and deep. I still can't read that e-mail without crying. So to big my sister I want to say: Starr, I love you with everything inside of me and thank you for being the best sister I could ever ask for.  I don't know what I did to deserve you, but I am so honored to call you my sister.

Starr and I at Richard and Mandi's wedding in September

The outpouring of love and support we have received has been amazing. There is no other word to describe it. I know it may sound corny or even cliché to say that I draw strength from your kind words, but its true. To know people are out there thinking of us and praying for our Lukas, oh man, its making me stronger day by day for the battle that lies ahead. Words like these are truly helping to making my heart whole again.

Just a few of the beautiful comments we have received - thank you all from the bottom of my heart

These next weeks and months are going to be filled with uncertainty. I have no idea what lies before us and I can't tell you how uneasy that makes me. Right now I don't even know who my prenatal care is being transferred to. I don't know the exact time frame when that change will happen, and I don't know anything about delivering at University Hospital or being a part of the Riley Hospital family. 

For now, I am spending as much time with these beautiful little souls as I can, because I know there will be a time in the not so distant future where I won't be right here with them everyday. That fact alone ravages my heart.

Riley has a thing for Christmas pajamas =)
A little game Riley and Hayden like to play

Their sweet Aunt Mandi has already said she will spoil them rotten during that time and give them as much chocolate as they want. Oh Mandi, we love you so. Forget the "in-law" part, you are my sister and I love you. Oh and to give my wonderful big brother a little love too: Richard, there is some Journey in the playlist. Just to honor you. Love you bro.

Yes, she is gorgeous and we love her (and mama-in-law Cheri too).

So, what comes next? Well, our little Hayden has surgery on the 8th, I have another fetal echo on the 9th, and then what will likely be my last "normal" OB appointment before our transfer of care takes place on the 15th. 

As always, please continue praying for our sweet boy.

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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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Tuesday, January 25, 2011

From the Top.

I should probably begin by telling you why I'm here sharing this journey with you guys. Here's a (not so brief) run down. Jonathan and I have two little boys, Riley and Hayden. In October 2010 our lives changed when we found out we were expecting our third child. Of course those typical first trimester fears sink in and you worry about the possibility of miscarriage, checking your toilet paper every time you go to the restroom and panicking at every slight pain and cramp. From the beginning, I have been very fearful this whole pregnancy. At about 5 weeks along Jonathan and I discovered after calling my doctor for some bleeding I had been experiencing that I had a subchrionic hemorrhage and would need weekly ultrasounds to ensure its size was not increasing and it was not jeopardizing the baby in any way. The fear kicked in high gear at that time, but the bleed resolved itself a few short weeks later. Still deep down I felt something was off. It just felt different this time around in a way that I could not wholly describe to anyone else. 

Fast forward to last Tuesday, January 18th. We had the ultrasound. You know, the one every pregnant woman waits impatiently for. We were going to be finding out the gender of our little Peanut. We found out that day that we were expecting our third little boy. When I saw his tiny fingers, toes, and his little facial features I fell hard. My pregnant body could muster nothing but pure, true love at that moment. I noticed during the ultrasound that the tech appeared to be lingering for quite some time on his heart. She said he was simply moving around a lot and she was having difficulty getting the shots she needed due to this incessant movement. In my heart I knew that wasn't true, but I also knew she would never be allowed to say differently for legal reasons. When the ultrasound was finally over, I sat in the waiting room and watched the ultrasound tech walk briskly behind the closed doors leading to the exam rooms. When my name was called my doctor and this ultrasound tech were looking very intently at a computer screen and my heart dropped. I knew it was for me and I knew exactly why. At that moment a feeling of pure fear and uncertainty came over me. The doctor walked in and explained that everything on the ultrasound looked great and then I heard that word no one wants to here. She then said but, the tech had trouble viewing a few of the outflow tracks to his heart that we like to identify. She tried to tell me that she was not overly worried about it because everything else appeared so wonderful on the ultrasound, but she was going to have Katie (the OB nurse for the practice) make an appointment upstairs with the Maternal Fetal Medicine office just for a closer look since their ultrasound machines are far more detailed.

Thankfully Katie called me the next morning and said that she had gotten an appointment for me that Friday, so I only had to wait a few short days. To me those days did not feel short at all. The waiting felt like an eternity. Friday morning finally arrived and I got to the Maternal Fetal Medicine office and checked in. My referral report was sitting right there on the desk and I read it while they scanned my insurance card and made the doctor aware of my arrival. The report read "abnormal axis and inability to view heart outflow tracks." This was basically what my doctor said to me too, so I tried not to worry although my heart was absolutely pounding and my stomach was in knots. I only sat in the waiting room for a few short moments before I was called back to the room where they would be performing an ultrasound. The tech was the sweetest, most kind woman and she explained to me that they always take a lot more measurements and look a lot more carefully at each structure so she did not want me to worry. As she went along, she explained every organ and we laughed about how amazing this whole process was. I asked her if everything looked ok and she very sweetly said "I'm not supposed to tell you this, but everything looks wonderful so far." Then she went to his heart and looked around. She explained that all four chambers were clearly visible, which ruled out a lot and was a good sign. Then she switched to the fetal heart view, which made everything on the screen much bigger for a closer examination. She turned on this doppler view that showed blood flow in and out of the heart and then I saw her label "left outflow track." I breathed a sigh of relief and thought "oh good, they're there." She finished up her portion of the ultrasound and uploaded it to the computer. She told me that one of the maternal fetal medicine doctors would come in and speak to me and that she would perform her own ultrasound showing me the vital organs and structures, but that it would likely be quick and not as detailed as her own. 

She left the room to get the doctor and I sat there with these big ultrasound pictures she so sweetly printed off for me on my belly. I gazed lovingly at his little profile and the pictures of his tiny feet and hands. The minutes passed and Dr. Skannal walked in and introduced herself. She asked me if we knew the gender of the baby and I told her it was a little boy. She then asked if we had a name picked out, to which I replied his name was to be Lukas Robert. Dr. Skannal stated that she liked to call the babies by name, which is why she had asked. She went through the scan and showed me his little kidneys, bladder, stomach, and each section of his brain. She printed off a few photos for me and then went to his heart. She explained each of the chambers and their corresponding valves. She looked at his aorta and showed me the structure as well. It wrapped around his heart beside his spine in the shape of a candy cane. Then I saw her focus and her facial expression change and that moment will forever haunt me. That was the moment that I knew something was wrong. She explained that while the rest of the aorta looked good, where the structure met with his heart was enlarged. Lukas was moving around a lot and was not in the best of positions, but she said it also appeared that his left ventricle may be a little enlarged as well and that she had a difficult time getting a view of his pulmonary artery.  The tears started to come, but I held them back as she stated that it would be a good idea to see the pediatric cardiologist who could give me a lot more detailed information and answers as to what was happening and why.

She took me in this consultation room and sat me down. She answered my questions to the best of her ability and then drew me a diagram of what the heart is supposed to look like and what she had found that was different on Lukas. She explained that the cardiologist would do a fetal echo, measure blood flows to and from his heart, look at his valves, etc. and that by the end of our appointment we would have definitive answers. She told me how sorry she was to give me this information and not really be able to tell me anything further than what she already had. She then explained that cardiology appointments are usually set at 22 weeks or beyond due to the fact that at this stage their heart is only a little bigger than a dime, but she was absolutely not going to make me wait that long for answers. The appointment was made and she shook my hand. Up until this point I had held myself together. When she let go of my hand she placed her hand on my shoulder and said "I will keep you and Lukas in my prayers," and I said thank you. As I turned away, the waterworks officially turned on. I began sobbing in a way I never even knew was possible and I had to run from the office. When I got into the elevator, I just put my hand on my little Lukas who was kicking away and cried like I never had. 

The weekend has been terribly difficult and it has been hard not to let my mind wander to those dark corners of "what if." My family checked on me repeatedly the whole weekend, asking what they could do to help me through. All I could say was "just pray for him." I am terrified for our appointment tomorrow. As the days have passed and the appointment draws near, these knots in my stomach grow tighter and the tears are welling up once again. The fear is becoming almost unbearable and I am grasping for ways to keep my mind off of what might happen tomorrow. Please pray for him.
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