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.

 

Game Day

This week has been nice and relaxing. Well as relaxing as it can be with a cute little baby. 

On Tuesday he developed quite the deep cough. We had been sleeping with the window open and the weather got colder. Linc was plenty bundled up but the weather change still affected him. I took him to an instacare since we couldn't get into our pediatrician until this coming week. I was just worried since he hasn't had any shots yet and his cough sounded so painful. The doctor gave me a hard time about not having a pediatrician. O-well Linc is just fine he just needed a humidifier. 

Lincoln continues to smile. Its still hard to catch. When he smiles Ryan and I turn into crazy embarrassing parents trying to get more smiles from him. We'll do anything for a smile. 

Marie is somewhat obsessed with Captain America so when we found this onesie we had to get it. Marie of course will be paying us back since we know she'll want the credit for this one. His hair is coming back in. 

Yesterday Notre Dame played Michigan State. It was my first home game so Ryan was excited to show me everything. He had gone to a previous game with his dad while I was still in Utah. 

Game day is no joking matter here. People come from far and wide. 80% of the Catholic wealth in America is in the stadium on game day. Ryan learned that while he was interviewing. 

The day actually starts at midnight with a drum circle at the dome. We'll do that one of these days when Lincoln isn't so little. We started the day off with the marching band's parade. 

They start at the dome and march into the stadium. The fans all line up and then join the parade as it marches by. Ryan wanted us to get prime spots so we got to our spot about 30 minutes before it was set to start. We got a great preshow with the cheerleaders right in front of us. 

About 1 minute before the band started some excited freshmen came and pushed us out of the way. When they noticed what they had done they made room for me to get a good view. Ryan held back with the stroller. He didn't want to be jostled. It was fun to see but I wish Ryan had been by my side instead I was next to this young freshman boy whose Bud Light sprayed me when it was opened. He was kind enough to offer me some. 

Ryan and Linc under the dome. This is after the band had passed. Most people joined in the march but you can still see how crowded it was.

Our first family photo by Touchdown Jesus.

Right across from Touchdown Jesus is the stadium. The stadium is right on campus. I can't wait to watch a game from inside. We have tickets to the BYU Notre Dame game this November but we'll see if we can find something to do with Linc. Otherwise I'll be selling my ticket. 

Me sporting my Irish Green. "Go Irish" 

After the festivities on campus we went to our stake country fair. It was a ton of fun and very different from anything I've done in Utah. The wards here are so tight knit. The stake is the same way. They had a ton of games for the kids and dinner for everyone. In our ward we have 2 sets of Elders and the stake has about 6 or 8 sets of missionaries. I've never seen so many missionaries wandering around. 

 If the weather wasn't so chilly we probably would have stayed longer but since it was chilly and I had to pump we just went home after chatting with some friends.

My milk supply took a dive this week. I blame the humidifier for making our room so nice and toasty it was so comfortable I slept through all my alarms several nights in a row. I read on pinerest about this power oatmeal from Starbucks to eat if your supply ever suffered. So I went out to get some. Little did I know I'd be gone for more then an  hour. I realized quickly that the game had just ended and traffic was a beast but since Starbucks was less then 3 minutes away I thought I could easily get there and back. Not the case. They shut down everything going into campus. I drove around for an hour trying to find a way back in. It was very frustrating since I needed to get back to pump and Ryan was stuck with an angry baby at home. I finally got back home and now have vowed never to go out during game time traffic again. 

PS the oatmeal worked wonders! 

I got home, pumped and Linc and I went straight to bed. Ryan found a way to watch the BYU UofU game online so he stayed up watching that. I really miss watching football. We've yet to find a way to watch the Notre Dame games online. We're stuck with the boring updates. Next year I'm hoping we'll  I'll be able to go to more games with Ryan. This year I doubt it will happen. 

Linc was somewhat upset when he heard that BYU lost to the Utah Utes. But then we reminded him that we're Irish fans now. Utah Utes? Whose that? 

This next week will be an exciting one. We'll go to our new pediatrician on Tuesday and then visit our cardiologist in Chicago on Thursday. I also have two Relief Society activities and we'll be feeding 4 Elders.

I'm hoping by the end of this week we'll have more information on his swallowing. We've taken him off bananas and now just feed him breastmilk in a bottle. I've even put him on the breast a couple times a day after I've pumped most of the milk out. He's doing great with both. Ryan and I are both more then ready to say goodbye to this feeding tube. 

I'm nervous for Thursday's visit as well as excited. Ryan really can't miss class, (When I was sick and he has to stay home all day he had a hard time catching up with work...and he didn't even miss class that day) so I'll be going into Chicago on my own. I've decided to make a day of it though since I have to pay so much for parking. After the cardiologist I plan on walking over to the Magnificent Mile, the shopping district and exploring. I am so excited to go to the American Girl Doll Store. Ryan says he doesn't mind if I take Lincoln as long as he's young enough to not remember it. ;)

Silver Beach

We're slowly getting settled in. When I say 'we' I mean me. I go through bursts of energy. We have all the big things unpacked and now its all the little things that I don't know what to do with. Its harder to find the motivation to unpack them. Since we'll be feeding the missionaries this coming Monday I better find it by then. 

Last weekend Ryan and I really wanted to get out and explore this new area. Unfortunately I woke up sick. Last Wednesday I was very very sick, like don't-have-the-strength-to-pick-up-Lincoln sick. It was awful. I don't get sick very often so when I do I'm a miserable patient. Luckily Ryan only has one class on Wednesday so he stayed home for the majority of the day and took care of Linc while I slept. During his class Linc was a perfect baby and slept the whole time for me. Anyways I was getting better but Saturday morning I woke up not feeling so hot. I still wanted to get out and explore before it gets too cold so we went ahead and drove up to Silver Beach.

We heard about Silver Beach from my new friend Andrea Despain. They had us over to dinner the first Sunday here. They raved about how beautiful this beach is so we decided thats where we wanted to go first. Plus it was completely free. Not even a toll for the drive. It was a beautiful 45 minute drive up to Lake Michigan. I successfully pumped on the drive up. 

It was a perfect day except for a chilly breeze every so often. The beach was amazing. Better then an ocean beach I've ever been too. 

Since we had Lincoln in the stroller along with his feeding tube and other stuff we just picked a bench on the boardwalk to hang out on. Ryan walked down the the water and took some pictures. I still was feeling rather weak so I was happy to just sit by Linc and people watch. 

I'm so glad we found this place now so when the weather starts warming up this coming spring we'll know exactly where to go. 

I am really loving Indiana. It is so lush and beautiful. I love walking on campus and try to do that several times a week. I love being with my little guy all day long. I never get tired of looking at him.

I love cuddling with him. Whenever I start to feel guilty for my dirty unpacked house I remind myself how fast this year will go. I have all the time in the world to unpack, my baby cuddle time is limited. 

Lincoln @ 2 months

I can't believe how much this little one grows each time I look at him. He is 2 months old. The newborn outfits no longer fit. He is currently wearing 3 month clothes, they are still rather roomy on him. 

We've got a couple smiles here and there as well as a few coos. They are still very quick to come so we have yet to catch them on camera. 

Linc's developed a cough that had us worried but its most likely due to the weather change. It is getting cold here at night. We are using a humidifier and it has made a big difference. 

He is still a good sleeper at night. We'll put him down around 9pm and get him out of bed around 8am.  We have yet to have a regular daytime schedule due to the feeding tube. The good news is his swallowing is getting better. We aren't doing any more bananas mixed with breastmilk. He is drinking straight milk from a bottle 3 times a day. I've also started putting him on the breast after I've pumped most of the milk out. (He is still on his feeding tube, we took it out for the pictures)

I'm still pumping every 3 hours. It seems to be getting harder and harder to get up at night. One more month like this then I can drop the middle of the night feedings. I can do it!

His hair is starting to come back in so he doesn't look like an old man as much. 

We've also been cloth diapering 24/7 and loving it. We've even had several diaper changes out of the house and its not too bad. You do have more stuff to lug around but thanks to wet bags you don't have any stink. I am so glad we chose to cloth diaper. 

Look how cute they are. 

Linc at 2 months:

Height: 22 3/8 in

Weight: 9 lbs 6 oz

A New Life

I've been at Notre Dame for a week now and honestly I feel like I haven't got anything done. This blog will get done though!

Here is a quick recap of life at South Bend.
-went to 2 BBQs.

One was with a bunch of psychology grad students who didn't know how to handle a baby in their company. We really are the minority here, being a married couple with a child all by our own choice. The second BBQ was hosted by our ward. There were plenty of children there and lots of fun.

-went to church and pumped!

As we were about to pack Linc into his carseat his pump starting going off "No Flow" that means there was a block that we needed to find. Thus we had to replace his tube, clear it out and then tape it all back on. We arrived at church just in time for the last 10 minutes of sacrament. I spent those minutes plus a couple more in the mother's room pumping. It was an interesting experience but a good one. The mother's room is the social room of the ward. When I went in there were already 2 women nursing. We had a nice chat and they finished up and left. As they left another young mom came in with her baby. After a very high stress morning to spend those 20 minutes in a quite room chatting with the ward members really helped calm me down. I have a feeling that I am going to make a lot of good friends in this ward.
That night a family invited us over for dinner. He is doing his residency at the local hospital and she is a former teacher. They have two very rambunctious boys and a cute chubby baby. They were very helpful and friendly. The boys were very excited to show me all their spiders and bugs they had found. It made me realize that I might not be ready to have my own little mancub. I'm glad I get a year or three to prepare for that aspect of motherhood.

-tried to unpack the apartment

This I feel is a never ending process. As soon as I empty one box there are 20 more to go. The other downside is our little apartment has little room for storage so we've had to purchase a few items to help us organize our stuff.

-Linc has started smiling

He still hasn't figured it out completely but he is definitely working on it. Sometimes I get a great big smile sometimes its only one side of his cute mouth but he is smiling in response to the silly things Ryan and I are doing to coax them out of him. I've tried several times to get them on film but it hasn't happened yet. We'll keep working on it.

-Linc is focusing more

I will catch this little man just staring me down from across the room. He also is starting to just look around and be content on his playmat.



-started cloth diapering

I am in love with cloth diapers. The only stinky part is emptying the bag into the washing machine. The rest of it really isn't stinky at all. I love how I don't feel like I'm wasting diapers when he decides to dirty one right after a diaper change. They are also freaking adorable on his little bum. Ryan has become a pro at it as well. I think I'll start being one of those annoying people who always advocates for cloth. Its worth the mess and the stinky for me if I don't have to spend the money down the road.

-got in my first cardio workout

Our complex has a ton of little amenities. Nothing fancy but it all works. They have a room with a couple treadmills, an elliptical and some other work out gear.  I have been dying to get on the weight loss bandwagon since I hit my highest weight during pregnancy. So after dinner one night Ryan watched Linc while I did a low impact 30 minute workout. I'm still scared to put on a sports bra or any other tight restrictive article so I just did a very quick paced walk. It felt so good to put my muscles to work.

-had my first sick day

Yesterday I was sicker then a dog. I woke up for my midnight pump barely able to walk to the front room where I pump. I went back to sleep only to be woken up by a pounding headache. I spent the whole day going from burning up to freezing cold with a headache and lots of other achy parts. I could barely function. Lucky for me Ryan only had one class so he stayed home and took care of Linc while I slept. He went to his class and Linc and I both slept the whole time. After drinking plenty of fluids and taking my share of advil I am feeling a lot better today. Not 100% but I can take care of my own.

-Linc went to his first doctors appointment here

Yesterday Ryan and Linc went to the local hospital for Linc's first assessment here in South Bend. We originally had an appointment with our pediatrician on campus in a couple weeks but they don't deal with feeding tubes so they sent us to the hospital. This caused some major chaos in our insurance but the doctors and office staff were very helpful. Wish we could say the same for the Notre Dame end of it. Ryan was not a very happy man yesterday. He still bristles when anyone brings up insurance. Insurance is and has always been a nightmare. Hopefully we can get it all figured out soon and then never deal with it again.

All in all I guess I have got a lot done. It just hasn't been visual until it was in writing.

Lincoln all bundled up ready for take off. We scored on the flight out there. It was fairly empty, most everyone got any empty seat next to them. Lincoln was great during the flight. The girls behind us not so much. ;) 

I love waking up to this little face. He is getting so big! 

vlogging

So I am completely overwhelmed by how much stuff we have in our tiny apartment and how little built in storage there is (aka NONE!), but I still wanted to do my weekly blog so I thought I would just upload the video I did at the condo for Marie.

When I have more time and when I'm feeling a bit more relaxed I'll do an actual blog on the move, my last weekend at the condo, south bend, the apartment etc. but for now you'll just have to settle with this video.

Enjoy these for the day. Maybe I'll blog tomorrow....probably not.