Cardiology in Chicago

This week I went to Chicago for a cardiologist appointment. It was my first time driving there and I did it all by myself. Ryan will be missing a lot of school when we go to Disneyland in November and he already fell behind on my sick day (he caught back up) so he really can't miss any more school. I felt confident I could handle it on my own and I did. My visiting teaching companion offered to go with me but since I knew I'd spend most of the day sitting around the hospital I thanked her but declined her offer. Especially since she has an adorable 2 year old daughter. 

Since it is a 1.5 hour drive but we gain an hour with the time change I planned on leaving my apartment at noon. That put me arriving in Chicago around 12:30pm so I'd have a half hour of leeway. Everything was planned perfectly I had to move my pump schedule around a bit and everything was set to go and then Lincoln decided to have a melt down. He was livid and it was not fun trying to get him in the carseat to go. I felt bad since we were on a tight schedule but as soon as we hit the road he was asleep. He slept the whole drive.

 I had to take a quick picture of this place. "Gary Indiana Gary Indiana Gary" The drive was so nice. I love how you feel like you're in the middle of nowhere since there are so much thick foliage. 

I knew the minute I got into Chicago traffic. I had less then 10 miles to go and it took me the whole extra half hour I allowed myself. I got to the hospital just fine only a few minutes late. It was easy to find. It was in the heart of a busy tourist section of town. People were everywhere.

The hospital staff were so wonderful and nice. They even let me pump when I needed to and they held off with his echo for those 30 minutes. 

His echo was painful. Little Man did not want to be out of my arms. Whenever I put him down he screamed until I picked him back up. The echo tech figured out a way for me to hold him on the table and she just worked around my arms. Linc fell asleep for a little bit and I watched Winnie The Pooh while the tech did her thing. Whenever she had to move to a new section of his chest he would fuss and complain. It took forever but we got it done. 

I felt bad that he was so upset but another part of me was loving the small fact that I was the only one who seemed to give him comfort. His cries made me tear up a couple times but knowing that I was such a security to him was a wonderful feeling. My favorite part of the whole day was the fact that I got to hold my baby for hours on end with no dishes or laundry to pull me away. 

He was not very happy to be poked and prodded all day long. Little Man wanted nothing more then to be left alone so he could sleep. 

As we waited for the doctor I decided to try to calm him down by breastfeeding him. It was time for me to pump and he was upset so I thought why not try to feed him and take care of both problems. He did amazing. It was perfect....until the doctor came back in and told me (rather bluntly) that breastfeeding him could do a lot of damage so no more.

I'm most upset over his feeding situation right now because if we would have stayed in Utah we'd be moving forward on a clear path. Here in Indiana no one knows his treatment plan or how well he's doing so they order tests. The tests though are scheduled weeks in advance so we're stuck in limbo waiting for another swallow study. I know Lincoln is ready to move on to the next step to removing his tube we just have to wait and wait and wait. ARGH.

Our cardiologist is amazing. I love her. She is good friends with our cardiologist in Utah so they chatted back and forth about Linc before we got there. She'll continue to keep our Utah cardiologist updated since we plan on returning to Utah after Ryan's schooling is all done. 

The whole time I was so confident that everything would be fine from here on out. We were told we'd be seeing cardiologists Linc's whole life just to check up on his heart's growth but nothing was anticipated to change. Our doctor informed me that she found something wrong in his heart and it would result in another intrusive surgery down the road. All my cheer went out the door rather quickly. I was shocked! Linc's already been through so much; he deserves to have a normal happy life with nothing else wrong. Looks like he'll be having another open heart surgery when he's in elementary school. 

Lets see if I can explain what is wrong. (Like I said, Ryan didn't come, so my explanation won't be as jargony.)

Here is a diagram so you can look at what you're reading about. We're looking at the aortic valve.

Most people have an aortic valve with three flaps (it looks like a peace sign) Lincoln has a bicuspid aortic valve, only two flaps. (Most likely Ryan or I have a bicuspid valve as well so we have to be screened for that.) A bicuspid valve isn't a big deal when you're young but it will cause your heart to age faster resulting in problems later in life. On Lincoln's aortic valve we have another complication. The veins that feed the heart blood, so the heart can function as a muscle aren't in the right spots. One of them (The one coming off the right side) is in a bad spot, its rubbing on the pulmonary valve. Right now its uncertain how badly placed it is but they do say we'll most likely have to have it surgically corrected. When Lincoln starts to become more active it can be fatal and can lead to cardiac arrest. 

When the body starts working out the heart beats faster and faster. When Linc's heart starts beating faster and faster the movement of each heart beat will cause the misplaced vein (feeding the heart muscle blood) to get swished by the pulmonary valve. If the heart can't pump because it isn't getting enough blood as a muscle it will stop causing cardiac arrest. We all know what cardiac arrest means and we don't want that to happen to Lincoln again.

The cardiologist assured me that its not a problem now while his heart is still small. She also defended our cardiologist in Utah saying it was too small to see then and even if they saw it they would have left it alone. We'll talk more about when he'll have surgery for this as he grows. She's thinking around 8-10 years old is when we'll operate. 

After a long day at the hospital Linc and I wandered around the "Magnificent Mile" Chicago's shopping district since it was only a block away from the hospital. I really wanted to get home but it was 6pm and I would rather walk around then sit in traffic. 

I did get to check an item off my bucket list. I went to the American Girl Doll Store. This has been a life long dream of mine. Life long since the store opened when I was little. I'm a huge fan of these beautiful dolls and spent most of elementary school saving money to buy them. I wandered around that store and then got some Chicago Pizza before heading home. 

It was as big as my face!....and so delicious.

I really wasn't feeling so happy so I'm looking forward to revisiting this area with higher spirits. 

The drive home was tough. I was alone in a dark car (pumping ;) ) which just makes it easier to process and then over process the bad news. I had my break down where I just cried and talked to God and cried some more. I kept asking God to give me strength to stay positive through this. I felt like I had used all my strength up during the first 2 weeks of Linc's life, I don't know if I have any more. 

After my break down I just wanted to talk to someone about it and stop over processing it. I didn't want to talk to Ryan on the phone since I knew I would break down again and I'd rather do it in his arms then on the Indiana Toll Road. So I called my Dad. 

I'm so grateful for my dad's strength and his experiences with dealing with medical issues as a caregiver. He knows how to stay positive and get the doctors moving if they're not doing what we think is best. I'm so grateful for the technology we have that allows me to talk to him at anytime, anywhere. Thanks Dad! I love you! 

I got home and told Ryan the news. Then we just sat and held Lincoln for awhile. It boggles my mind that my perfect baby has something wrong. He looks like the poster child for a healthy 2 month old. If he didn't have a tube coming out of his nose no one would even suspect the rough lot he's been given. 

 It seems so unfair. He hasn't done anything wrong and yet he's been cursed with this from before he was even born. 

Those are the thoughts that keep trying to invade my head and heart. Those thoughts are the type to ruin a person though. I have to find the positives or else I won't be able to handle this situation. Life is unfair we knew that coming into it so theres no reason to dwell on that fact. 

Some positives I've already found are:

-Dr. Young is amazing and someone I feel like I can really talk to directly about my concerns

-technology allows us to see it now rather then find out about it the hard way

-he's already had one successful heart surgery so whats one more?

-we got into a neurological study since Lincoln spent time in the ICU due to lack of oxygen. This means more doctor appointments to watch his development. -Ryan and I went through hell the first time but we touched heaven multiple times 

-I have never been stronger spiritually

-Lincoln is a healthy, strong, growing baby boy who brings me more joy then I've ever known, I go through anything for him. 

After having a few days to process this news Ryan and I both feel loads better. Once again we can't worry too much about it now so we focus on the positives. Our baby boy is a joy and a miracle. We wouldn't change that for anything. 

Heres a quick video I made for Marie since she's in the Philippines.

Enjoy.