Saturday, January 28, 2012

Welcome to Holland


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, January 26, 2012

Heart Mugs

Our wonderful sister Toni has graciously decided to start a fundraiser for Will's medical costs.  For those who don't know, she is a very talented artist with a career in ceramics.  She is most kindly using her own time and talents to make special mugs to sell for Will's benefit.  We cannot possibly thank her enough!


Aren't they pretty?

If you are interested in ordering a heart mug, e-mail Toni at <> for information.
We love the mugs, and are so excited about them.


Sunday, January 22, 2012

Some pictures :)

21 Weeks
Cool Mohawk hat that Kristina made for William!

 Look!  He is smiling!

Friday, January 20, 2012

First appointment with the cardiologists.

        The cardiologists confirmed Will's diagnosis today after our echocardiogram. While I was very much hoping for them to tell me it was a mistake, we were fully prepared for this situation.
        All things considered, most of the things I heard today were good. First, she explained what exactly was wrong with William's heart. In layman's terms, his left ventricle is almost nonexistent, and his aorta was very small.
        However, the rest of his heart looks very strong and everything else looks normal. His right ventricle in particular was beating very well, and looked perfectly developed, which is a VERY positive sign. She pointed out a hole that leads into the right ventricle, which was very big. She said this is really great, because often the hole can be small or closed, but his looked to be the perfect size.
        Fortunately, because of this, he is a good candidate for the reconstructive surgeries (this is excellent news.. I won't even go into the other options.) They said they are confident the Norwood will be a success, as he has no additional risk factors. There was no hesitation there, and this was a big relief to me. One of the doctors estimated an 85% success rate (the highest we have heard so far), and said they do an average of 2 Norwood procedures a month.
       They gave a lot of details about the procedures, and what will happen right after he is born. Also, a timeline of the procedures was reviewed. We knew a lot of this information already from the research we had done, and all of it matched up.
       Otherwise, Will is measuring at 15 oz, right in the 50% percentile. So he is growing very well, and everything else is looking healthy. He was much sleepier (and therefore more cooperative) this time. But he did give us a cute wave, and a few good kicks.
      On a personal note, the doctors relieved a lot of my worries. For one thing, they saw no reason why I wouldn't be able to hold him (after he is hooked up to his IVs and other things), before he was transported to Children's.
      They also said that while he is at Children's, he will have a private room in the NICU, and Jared and I will be able to stay with him 24/7... sans the surgery. They have pull out couches for us to sleep on. He will also be allowed to have visitors (pack your bags!) at any time. These were two of my biggest concerns.
       Another bit of good news for us, is that I will be able to remain in Nashville much longer than anticipated. I will even get to go back to Dr. Felix for basic check-ups, as long as I am in contact with the high-risk OBs in Cincinnati.
       At the end of the appointment, the doctor said she was sorry to have given us bad news. I told her that we already had received the bad news. She actually had given mostly good news. It is so amazing at how our perspectives have changed in these past few weeks. Who knew that I could consider a heart surgery good news... or a private room for a month in the NICU. It is what it is, though, and I do consider all of the things I heard today very comforting.
       We want to thank everyone for the continued thoughts and prayers. I realize in times like these it can be difficult for all parties, because nobody know what to say (that includes us). Just knowing that Will has so many supporters means a lot to us. I have saved every card he has received, and I can't wait to show him some day how important he is to the world, and how many people care so much about him. I hope that you all know how important you are to us, as well. Thank you.

Monday, January 9, 2012

An Important Phone Call

         After a rough weekend, we had a very good start to our week. This morning, we got a personal phone call from the best pediatric cardiologist at Cincinnati Children's hospital. This really helped to ease our minds.
         First, he told me he was very sorry for our recent diagnosis. I gave him a quick background, as far as where Will was diagnosed, my age, and a few other things.
         He told me briefly what the schedule would be like. Will's first surgery will be performed within 3-4 days of his birth. Strangely, this was a relief to me, knowing that he would have a few days to adjust and just for me to be with him and see him as much as possible. I didn't ask about details as far as being with him, because I do not yet feel prepared to handle it when/if they tell me I won't be with him. After his surgery, his recovery is expected to be about a month in the hospital.
         Doctor Hirsch also mentioned the importance of family support. Despite the fact that Vanderbilt would provide us with excellent care for Will, it will be invaluable to be near our family during this time. We already knew this, but it was good to hear it from him as well.
         My dad mentioned that they would move to Nashville right now if we needed to be at Vanderbilt, but we all agree that Children's is the place to be. They are in the top 10 rated in pediatric cardiology in the country. Vanderbilt is a great hospital with a wonderful reputation, but they were not on the list at all. I think not only being closer to my parents, but also our parents in Coshocton, and almost all of our extended family and close friends.
        The doctor then gave me his phone number, and told me his office will be calling to set up an appointment to do another echocardiogram, as well as setting up counseling for Jared and me. We will schedule the echo as soon as possible, and I will fly to Cincinnati to have it performed.
        I feel this phone call has already changed a lot. While we are still scared and upset, we feel reassured to know that we are getting absolutely the best care possible. It was such a surprise and a blessing to hear almost immediately from the doctor himself.
        Please continue to pray for Will, and send him all of the positive thoughts you can. If we all pray together now, we can pray for a miracle at our next echo... a happy, healthy baby, with a strong, healthy heart.


Edit: Our first meeting with the pediatric cardiologist is set up for next Friday, January 20th at 2:30.  He will be having his next echo at this appointment.

Sunday, January 8, 2012

The Diagnosis

On January 6th, I was awake by 5AM. Having hardly slept that night, I should have been tired. Not that day. I was wide-awake with excitement and anticipation. We had been looking forward to this day for a long time. The last time we had seen our baby was only 7 weeks along… a wonderful experience, but not much to see. We got ready, and headed to Dr. Felix's office around 7:30.
By nature, I worry about everything. Every appointment so far had brought relief whenever they pulled up a strong heartbeat to show that baby was still in there. For some reason, this morning I was not worried. I was thrilled to finally get to see our little one and find out the sex. I had felt his movements for a few weeks at this point, and the past week I had started to feel them much more frequently. Honestly, this was the first time I felt confident that our baby was fine.
There wasn't a wait to get into the ultrasound. We were the first ones there. The second the picture came up on the screen, it was the most amazing thing. The baby was moving and kicking and I literally sighed with relief that I truly had nothing to fear. Almost immediately, baby revealed to us that he was indeed all boy. We already knew that his name would be William Jude. We were so excited. The ultrasound tech was commenting on how active he was, and he seemed so happy.
A few times, the ultrasound tech (we later found out she is actually an OB) mentioned he was moving too much to see the heart like she wanted, and that Dr. Felix would probably order another ultrasound. This actually made me more excited because we would get to see Will again! After we were done, she printed out pictures and gave us a disc with pictures to take home. We had to go out to the waiting room to wait to see Dr. Felix. Eagerly, I looked at the pictures and thought about my wonderful baby boy.
During this wait, Jared mentioned something about the baby's heart, but I brushed it off. All the u/s tech had said to us was that she was unable to get a proper view. Apparently, in my excitement I must have missed something that Jared picked up on.
A few minutes later, Dr. Felix herself poked her head out and called us back. It was normal for a nurse to come get us, but I thought nothing of this at all. She showed us to a room, and sat down and immediately the tone was quite serious.
She told us that the u/s tech had seen something with the baby’s heart that had her concerned. It may have been a bad angle, but it didn't look good. Dr. Felix told us they were getting us in immediately to have another u/s at Maternal Fetal Group, where another OB would do an u/s, with better equipment. I was scared, I cried, but deep down I still believed it was just a "Bad Angle." After all, Will had been extremely active the whole time and his heartbeat sounded perfect.
I remember right as we came out of the office, I recalled Dr. Felix telling me before that she would not sugar coat things. So I said, "You're not worried, right?" She looked right at me and said, "I am worried." She gave me a hug, and a box of tissues and took us up to get directions and set up a time to meet her afterwards.
The drive to Maternal Fetal group was only about 15 minutes, but it seemed a lot longer. I was nervously texting my mom, but again I still felt optimistic that the better equipment would reveal a healthy heart. Every time he had a strong and consistent heartbeat, even on the ultrasound we just saw.
We waited a long time for that ultrasound. I hadn't eaten anything all day, except a glass of orange juice before the appointment that morning so I was starving. When they finally called us back, the u/s tech took about a hundred pictures of Will's heart. He was very active at first, but eventually settled down. Then they moved us to another room and another u/s tech was taking pictures.
No one was saying anything, and anytime we asked if they knew what was going on, they would answer, “the doctor will be right in to answer all of your questions.”
Finally, the OB came in to take over. I saw her face as she looked at the screen. I saw her bite her lip and I remember thinking, "I hope that is just a weird habit of hers." Because most people bite their lip when they don't want to say something horrible.
I couldn't take any more silence, so I finally asked what was going on. "Let me finish the scan, and then we will talk about it," was her answer.
She finished the scan, and came and sat by us with a paper and pen. This really gave us a slap in the face, because we knew that if nothing was wrong, she would simply tell us. She began by drawing a diagram of a healthy heart. We would not need diagrams if our Will was okay. Then, she drew another heart, with one side much smaller than the other. That is Will's heart. She told us he has Hypoplastic Left Heart Syndrome. The left side of his heart is severely underdeveloped, and will be unable to support his circulatory system once he is born.
She briefly explained that this meant he would need multiple surgeries once he is born, and it will depend on what is causing the underdevelopment (if it is the artery, or the ventricle itself) to determine the effectiveness of the surgeries.
"Do you have any questions?"
"What is the possibility that you are wrong about this?"
"Very small."
"Can this correct itself before he is born?"
There it was. She was not even close to Dr. Felix in terms of compassion, not to mention we had only met her 15 minutes ago. It was harder for me hearing this from a complete stranger, let alone one who showed no emotion whatsoever.
We had literally no time to process this, because we had to be back to see Dr. Felix right away. She said that is exactly what the OB who did our scan there was concerned about. We sat in the exam room as she explained that we would have to switch hospitals, be referred to a pediatric cardiologist, and be assigned to a team of high-risk prenatal doctors at Vanderbilt Hospital. She said we are welcome to continue routine care with her, but that it might be more of an inconvenience because of the likelihood that I would be seeing the high-risk doctors multiple times a month, maybe even a week.
She told us that his birth would be scheduled, possibly a c-section. And she would not be doing it. On top of all the heartbreak, I also lose my doctor whom I have grown to trust, besides the fact that her compassion is almost unheard of in her profession. I know this seems silly in comparison to what we were facing, but it did not help to ease my mind.
The only thing she told me that I could construe as anything positive is that while Will is still in utero, he is safe. His circulatory system is well supported by my body and it is unlikely that I will have any pregnancy complications. The real complications will come once he is born and his heart will be expected to support his body by itself. As a new mother, you want your child to need you, but it is so hard to hear that not only does he need you, but his life altogether may depend on you.
That being said, it was obvious on the ultrasound that he has no idea what is going on. Right now, he is as carefree as anyone can be. That is a feeling I would love to be able to share with him. I hope he will continue to feel that after all is said and done.
Feeling him move is different now. What was originally the source of such joy and excitement is now so bittersweet. Half of me is happy to know how content he is. The other half of me aches to know what is waiting for him out here. All of me wishes I could keep him safe and sound forever.
It was hard for us to wake up the next morning and realize it was not a dream. What should be the most fun and exciting time of our lives has turned into a nightmare. It is hard not to break down and let your mind wander to all the "what ifs." And although the doctors assured us that there is nothing we did to cause it, those thoughts still tend to creep into your head as hard as you try to keep them away.
Despite all of this, we do not believe that God is punishing us. We believe that he is trusting us. He has given us one of his most special children who needs the most love, because we have the power to provide it. And we are already doing everything we possibly can for him. If this had to happen to anyone, I have come to terms with it happening to us. I could not even bear to wish this would happen to anyone else in the world. Of course, Jared and I would trade places with Will in a second, but that is just not a reality.
On top of that, he already has such a large support system. It may not seem this way, but he is a very lucky boy. I feel amazed and blessed at all the people who have reached out to us in the short time since we have received this news. We feel confident that all the prayers and positive thoughts will continue to grow, and have all the power in the world to do anything the doctors can not do. That is called a miracle, and Will is going to be one.
My wonderful parents dropped everything on Friday and drove down to spend the weekend with us. It has helped so tremendously, and we were able to laugh a little bit today. We went and bought Will some new clothes, and even went to see a movie. We have said thank you to them many times, but I don't know if we can ever truly express what their support meant to us this weekend. They really helped to ease our minds, just knowing that they love Will as much as we do.
I know there are others who wanted to be here this weekend, too, and we are glad to know we have so many kind friends and family members. It is good for us to be able to live life as normally as possible while we can, though, so I think maybe it is for the best right now.
In the meantime we are trying to hash out details as far in advance as we can plan, but have so far had very little time to research. As of right now, we are planning on seeking care with Cincinnati Children's Hospital. They are one of the best pediatric hospitals in the country, with a higher proven success rate dealing with HLHS. It is lucky that I will be able to move in with my parents when the time comes, and continue prenatal care in Cincinnati so that we will be there when Will is born. I will have to go there in advance to meet with pediatric cardiologists. We have researched our options, but he or she will better explain them and give us more details on what to expect and how to be prepared. We will have another echocardiogram (this is the scan where they take a detailed look at Will's heart) within the next 2-3 weeks.
This will be very hard on Jared and me, because he will have to continue to work in Nashville. I am going to stay here as long as I can, but we need to do what is right for Will. Thankfully, modern technology will allow us to skype, and he will be able to come stay on weekends. It is going to take a lot of strength on his part, to be so far away from all of his family, but it is a temporary solution for the good of our little boy.
Meanwhile, we do not ask for anything more than your continued thoughts and prayers. We honestly believe in the power that all the positive vibes will have toward healing our little baby. We thank you for all that has been offered, and is continuing to be offered.
We truly believe that Will is going to live up to his name, and live his life to be a very Strong-Willed boy. That, along with all of the prayers and support, is going to make this miracle happen.
Here is a link for information about HLHS:

Please share this blog; we’ll continue to update it every step of the way to keep all of our friends and family informed.

We are open to questions and positive messages and will do our best to respond.


This is Will's cute little arm.

Will's Grandma Paulett bought these outfits for him.  The one on the right says "little drummer."