Thursday, February 10, 2011

Strength.

This was something I searched long and hard for yesterday. I had this image in my head that yesterday's echo was somehow going to be easier than the previous one. I knew there would be tears, there always are, but I figured I had heard all of this information before and nothing could really surprise me. The appointment was made easier by one presence though. My sis-in-law who volunteered to come with so I wouldn't have to be alone. She had worked the evening before (she's a nurse) and weathered the blistering cold just to come and give me support and some much needed hugs. So, thank you Mandi. I love you. And thank you to everyone who volunteered to come with me too. 

The echo itself was pretty much the same as the last. I had a different ultrasound tech during the first part of the appointment than I have had previously, but she was great. She was a young gal who told me all about her two boys. Mandi, the tech, and I all shared some nice smiles and laughs while she did a quick growth scan to make sure Lukas was still growing well. Thank goodness he is growing beautifully and all of his other major organs look beautiful. Phew. She handed me a picture she had printed out of his little face with his hands nearby and I laughed with Mandi as I told her that he looked like a little grumpy old man. But that picture was wonderful and I just looked at it and imagined my sweet boy growing inside.


My little grumpy man

Dr. Dungy-Poythress (Tony Dungy's sister! how awesome is that?) came in and hummed as she showed me each of the organs. She then said everything looked great. She even complimented the cross necklace I wore around my neck. Sweet, huh? She stated Dr. Darragh was running a little behind, but would be in to see me in just a few minutes. While we waited Mandi and laughed. We made fun of our husbands and talked about Riley and Hayden. Then Dr. Darragh came in the room and apologized for running behind. He had a family practice resident with him this go round and he got down to business.

Dr. Darragh went to the heart and was discussing with the resident what he saw as he tried to focus since Lukas was bouncing all over the place. Dr. Darragh told me he was still confident in his original diagnosis of truncus arteriosus type I. Then he answered some of my questions. He explained each of the different forms of truncus and said that while it would not be easy, type I is the easiest of the three types to repair. He then told me about the different valves they used, which was a little interesting. I just assumed it was a mechanical valve that would be placed, but that assumption proved to be incorrect. Each type carries its own set of pros and cons, but both are viable options.

Then we discussed a little more about Lukas' delivery. He said it would be a little scary looking because there will be a lot more people in the delivery room than I have ever been used to. He said there will be a neonatology team to check Lukas out, as well as a cardiologist or two in additional to the perinatology team who will actually perform the delivery. Barring everything looks good and he appears not to be in distress, the plan is to hopefully have him spend a couple of hours with us before he is transferred to the NICU at Riley for monitoring. We even discussed how nursing would work, since I knew he would probably would not be as strong as either of the boys.

Then we moved into the valve replacement operation. He said this generally happens at 5 to 6 years of age, but could happen sooner or later than that depending on how he grows and when the needs of his developing heart change. It could be as soon as 3 years old or it could be later than 5 to 6 too. Unfortunately, they can't make that prediction until little Lukas is actually here and we see how the first operation goes. He explained there would be slightly less risk involved in the second operation just simply because Lukas would be older and his heart would be a little stronger by that time. 

Then I asked the question I had thought about a million times. And deep down I knew the answer, but it was rough to hear. I asked Dr. Darragh if the second surgery would be open heart as well, to which he replied it would be. Each and every operation Lukas will require will be open heart, as they simply cannot do it another way at this point in time. At that moment I felt the Earth disappear beneath me. The only thing that was running through my mind is that we wouldn't just have to go through this once. And by the time the second operation comes around he is going to know what is happening and I can only imagine how scared he is going to be. He also told us to basically look for the symptoms of congestive heart failure, because these are the symptoms I will notice if something is wrong. I used to work in a hospice unit some time ago. I had many patients who were in congestive heart failure, but they had each lived these beautiful, rich, robust lives. Our Lukas? Well, he is going to be fighting to live this rich, robust life from the word go. And that thought drained me. But, like a mama bear, I am ready to fight for my cub. I will not give up on him.

You see, I forewarned Mandi about how my post-appointment breakdowns usually worked. I told her my telltale signs that I was fighting off tears, like the fact I twitch my nose a lot. When Dr. Darragh went over all of this information again and answered each of my questions, I am sure she saw that nose a-twitchin' many, many times.  I also told her that I usually managed to hold myself together while in the office, but as soon as those doors closed behind me it is like someone unleashes the flood gates. And she described that whole feeling perfectly later in the day. She told me she understood why because when you are in the office it is like you are in this different world, but as soon as you walk out those doors you are back in reality. And she is so right. Its like a big, hard slap in the face as soon as those doors close behind you.

With that information in mind, our appointment wrapped up. Dr. Dungy-Poythress came back in and told us since we were transferring to IU and the same cardiology team would see us there that there was not a reason for me to have a follow up appointment with them, as Dr. Darragh wanted another check up with him in about four weeks either at that office or IU. She walked us outside and wished me the best of luck with everything. And when those doors closed and Mandi and I waited on the elevators, the tears came strong and hard. I tried to fight them off, but I couldn't. And Mandi just hugged me and told me she was sorry and she knew how hard this was on me. On the way down to the ground floor Mandi told me what a wonderful mother I was and how she knew we would get through this as she just rubbed my back. When we got down to the lobby, Mandi told me to please call her if I needed anything at all and asked if I was okay to drive. She's a doll and I am so very thankful she came with me so I wouldn't be alone.

The appointment was harder than I thought and it literally drained every ounce of strength I had. I know this is how things will be. I know everytime I have an appointment that the fear of the unknown is going to return. More than anything, I just cry for my boy. I wouldn't trade him for anything in this world, but my heart just aches for him.  It aches for the hardships my baby will have to endure. I know I am not the first person to embark on this journey, and I know I will not be the last. And my heart aches for that simple fact as well.

Oh, just so you all know Hayden is pretty much back to himself today =) Isn't it amazing how resilient kids are?

Brother time on the couch with their Pillow Pets and Hayden's favorite blanket

Thank you again for all your prayers, positive thoughts, and well wishes for our little Lukas. We appreciate them so deeply and please continue to keep him in your prayers guys.

P.S. - I think we know now who is going to be doing Lukas' operations. His name is Dr. Turrentine and from what I understand he is pure magic in the operating room. He had been recommended to me by a new heart friend, my sister, and my mama-in-law.  Dr. Darragh absolutely recommended him also and said we would do everything possible to ensure we secured him. That made this aching heart smile =) And sorry about the lack of pictures today. I promise more next time!
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6 comments:

  1. It's amazing how kids can bounce back so quickly after surgery. :) Hayden looks he is doing good.
    Wish I could be there to give you a big hug and I'm so glad you didn't have to go to your appointment alone. Your sister in law was a blessing to accompany you.
    Praying that you secure this wonderful doctor to perform the surgery on Lukas.

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  2. I just met with Dr. Turrentine's partner today. You are in excellent hands at Riley. Sending you lots and lots of love. xo

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  3. It was so nice of your sister in law to go with you. It really is a little easier when someone else is with you. I decided to limit the number of echos I had during my pregnancy because I got overly emotional and it drained me for days.

    I can offer a little something that helps me...look at how far doctors have come with treating heart defects in the last 20 years...I know they will find new ways in the next few years and I pray all the time the find easier ways to perform surgery on our little ones. I know it is not a definite, but there is always HOPE they will find less invasive procedures or ways to fix our little ones completely.

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  4. You have a wonderful sister in law! I'm so glad you have such a supportive family surrounding you as you walk down this road of being a "heart Momma." My prayers are with you, Lukas and your family.

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  5. Lisa Lugar, Christie's mommyFebruary 12, 2011 at 1:05 PM

    Hey sugar doll, I love the newest picture of Lukas. He is incredible just like his mommy and his brothers. I know everything will be just fine. I see him playing with his brothers and loving on his mommy and daddy. Lukas is beautiful just like you, Riley, Hayden, and his daddy Jonathan. I cannot wait to hold him and feel his soft skin when I give him a little kiss on his forehead. Believe in God, believe in yourself, and believe in Lukas. Honey, I know he is your little cub and you will always fight for him, but you are my little cub and I will always stand by your side and fight right along side you forever and ever. I will always be there for you and your three beautiful boys. I love you baby girl more than any words can ever say. I love all of you forever and ever.
    You will always have my love,
    Mama bear

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  6. Let kailee watch them, I'm tired of her talking my ear off about your boys. Its really sweet.

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