Road Trip to Notre Dame

Last week I (Ryan) left early Wednesday (August 21) morning to begin a road trip to Notre Dame. For all of you who don't know, I'll be attending Notre Dame in a PhD program for Developmental Psychology. We plan on being in Notre Dame for five years. But we had to get out here first to begin our adventure.

Bright and early Wednesday morning my Mom, Dad, brother and I hopped into a Penske moving truck and our Versa. We excitedly began our journey by getting a little breakfast and topping off our vehicles.

We expected Day One to be pretty long. We were hoping to get to Lincoln, NE; a little more than half the distance to South Bend, IN. We expected about a 14-hour day. 14 hours on I-80... Once we bounced onto I-80 in Utah, we did not deviate that course the whole way to Lincoln (and eventually the whole way to South Bend).

If you've ever driven on I-80 through Wyoming and Nebraska you probably know what I'm going to say next. The drive was extremely boring. Wyoming was brown and mostly flat and Nebraska was flat and flat. Mark and I drove the Versa so we entertained each other by stopping on most of the state lines along the way. We had also gone grocery shopping to stock up on road trip goodies. We got plenty of sunflower seeds, beef jerky, and some sugar snap peas (one of Mark's favorite snacks). We also jammed to our music. At times we tried to play a game we affectionately called, "No Skippies!" Basically the game means that you turn your iPod on "all music" and you are not allowed to skip any song. Yikes. We reminisced with some classics, and we suffered through some instrumental music not made for driving. We decided instrumental music could be skipped for our sakes. We realized that we didn't have enough music, even if we played "No Skippies!" the whole time. We ended up just picking and choosing albums to rock to. One of our surprising favorites was Eiffel 65, Europop. Good memories.

Mark catching up on some Zzzz

Somewhere in the middle of Nebraska Mark and I did some exploring off the side of the road.

Our favorite drink! Limon Pepino (cucumber lime Gatorade)

By the end of Day One, and when I say the end, I mean, about 11pm, we finally get into our nice hotel room. Thankfully we all made it through the first day.

Day Two consisted of some better scenery through the rest of Nebraska, Iowa, Illinois and finally Indiana to South Bend. Day Two had considerably less driving, but we had to unpack everything when we got to our apartment.

We made a quick lunch stop at Gramma's Kitchen off I-80 somewhere in Iowa near the World's Largest Truck Stop! And off we went! We blew through Illinois without stopping, but Mark and I had some difficulties trying to get onto the toll road to take us to South Bend. After making a U-turn at the next exit three miles ahead, we cruised to South Bend.

We were really excited when we starting seeing Notre Dame Football billboards. I knew we were in ND Nation!

We finally made it to our new apartment around 7pm on Thursday. Our two days of driving felt like two weeks of driving. We drove 1500 miles from South Jordan to South Bend in two days. Another miracle.

Once we got there and I checked in, we started unpacking. Thankfully a number of my neighbors swarmed the moving truck and made quick work of our boxes. We enjoyed chatting a little bit afterward and found out that there are 14 LDS families in our complex and all the couples in the complex have kids. It's a very homogenous group.

We were able to move enough boxes around to make sleeping areas and we hit the sack.

Friday morning I had an orientation for the Psychology program. I jumped in the shower only to realize we hadn't unpacked the shower curtain. But that didn't matter because I couldn't find the mechanism to turn the shower on. A bath it was. I quickly got ready and drove to campus, got lost, asked a campus ministry priest how to get where I was going, sped walked to Haggar Hall, and arrived late to my orientation.

Let me tell you a little something about Notre Dame campus, first, it is beautiful. Old buildings, tradition, sacrifice, and dedication exude throughout the campus. Second, all the buildings look the same with very little identification, besides the golden dome and the basilica, I have no idea which building is which. I have now been lost enough that I know my way around, at least to the places I need to get to. Third, because of the age of buildings and the fact they are all halls, not buildings (e.g., Haggar Hall, McGinis Hall, Flanner Hall, etc.) I imagine I'm at Hogwarts. This perception solidified Sunday evening when my family and I walked around campus. All the undergraduates gathered for some sort of [wizard] games. They chanted the names of their halls, calling out to other halls in some sort of brouhaha. I am no longer an undergrad, so I am above those silly things....hahaha. That reminds me, I don't know what it's like at other universities, but anytime the graduate students talk about the undergrads they make the undergrads seem like an inferior species. I think it's funny.

Over the weekend, I mentioned we enjoyed some time on campus, we also raided the Bookstore, went golfing, and explored some of the surrounding area. On Sunday, we found the stake center by following other BYU grads from our complex to the building.

On Monday morning, my family had a plane to catch. Before I dropped them off at the South Bend regional airport we went to Perkins for breakfast. Thankfully, we had a nice waitress who rushed our food out. We then followed Siri to the South Bend airport...except she thought we were an incoming plane that could land on the runway. We were totally lost. Time kept running out as we frantically tried to reroute Siri and find airport signs. Finally, we found the entrance and my family had a slight miracle in reminding the Frontier front desk person of his job so they could get on the plane. Thankfully they safely made it home. All in all it was a nice trip that felt like two weeks.

Blogging is harder now

I have spent the better part of the morning trying to get those two blog posts up. Man I never understood how hard it was to take care of a newborn and do all the regular things (shower, pump, comb your hair etc)
As hard as it is to blog I have a goal of blogging once a week. I can't wait to turn this blog into a book at the end of the year and see what we've been through. Lets hope I can met this goal. It is so important to write down what is happening while it is still fresh.

Blessing Day

Since Ryan needed to get to Notre Dame by August 23rd for orientation we decided to bless Lincoln at home the night before the moving caravan rolled out. 

Thus Lincoln was blessed August 21st at my Dad's house. It was a very busy day for us getting the last minute packing done, house cleaned and everything else ready but we did it. When it came time for the blessing everything was perfect. 

 We kept it simple with treats after the blessing. It was my first time making the tissue paper pom poms and I loved how they turned out.

 Lincoln with his Great-Great-Grandma June

The men that stood in the circle.

The Woodbury/Maxfield family

 Ryan's 4 Generation shot

My Grandparents Heywood. They drove all the way up from Arizona for this one night for us. I am truly going to miss them this next year.

The Davidson/Heywood family

We are such goof balls. 

I know this craddle is probably making most of you cringe for all the safety violations and such but I'll have you know my Great Grandpa Ralph slept in this crib along with my Grandpa Davidson, my dad, (most of his siblings) myself, my sister and most of my cousins. It truly is a family heirloom. 

I treasure the fact that my little man will get to sleep in it for a couple weeks before we head out to South Bend. 

I was impressed with how good Linc did through the whole night. I worried he would fuss or ruin his adorable outfit but he was a perfect angel. 

Wednesday morning came too early for us. We said goodbye to Ryan around 5:30am. Then he and his crew (Melanie, Clayne, and Mark) drove into the sunrise on their way to South Bend. He kept me informed the whole drive which was nice with text messages and pictures. They are currently safely in South Bend setting up house for me and Lincoln. We will be joining them in 2 weeks if all goes well.

Lincoln @ 1 month

 Lincoln is one month old. As I was thinking about what to write I was kind of overwhelmed. In just one month of life he has gone through more then most grown adults have had to deal with. He is a trooper. Instead of focusing on all that he has been through I'll let you reread our blog.

Here is what I know about Lincoln after spending a month with the little tyke.

 He loves his Wubbanub binkies. He has two and they have to go everywhere with us. I'll be honest maybe I love them more then he does. They are the only binkie that we can keep in his mouth for longer then 30 seconds. He looks so cute when he "grabs" hold of his little friends. 

 Lincoln is a very calm baby. He only fusses when he has something wrong, usually a stinky bum, gas, or is very tired. When he does fuss 9 times out of 10 if you put him on your chest and start patting his back he will calm right down. This is his favorite way to sleep when he is over tired.

 

Apparently its Ryan's favorite way to sleep too. 

 So far we have been to his pediatrician three times. They were worried about his weight but that seems to be improving since we've taken him off Lasix (the medicine that kept his body "dry" so his heart wouldn't have to work too hard).

He is one long baby. This teddy bear was given to me when I was a newborn by my Aunt Jana. I thought it would be fun to take a picture of him next to it. This bear brings back so many memories from my childhood. No one had a bear this big. He was the best! 

Another thing we've learned about Linc is he loves his left side. If we aren't careful he will have to wear a helmet in a couple months to even out his head shape. 

Linc loves his sleep. Since bringing him home from the hospital he has proved a good night sleeper. We'll put him down around 10pm and he has to be woken up around 9am. If we don't wake him up he will keep sleeping straight through lunch. Now before you start freaking out about how wonderfully amazing he is to be sleeping through the night before 6 weeks you need to remember he is on a feeding tube. Little Man never gets hungry. He is on a constant feed which means he gets food 24/7. Thus there is no need to wake up at night. 

This has made it hard to get him on a schedule. All the baby books I've read about scheduling your baby never mention what to do if he doesn't need to feed every couple hours. O-well sleeping through the night is a fair trade off.

 Lincoln at 1 month:

weight: 8 lbs. 4 oz

height: 22 inches

Swallow Study Take 2

 Today was a very long, busy, long day. We went up to Primary's for Linc's cardio follow-up and his second swallow study. 

They set up the appointments and decided they needed to be at 10am and then 1:30pm. Thus we had a long day at the hospital, it was our longest outing with Lincoln. (He went to church last week for the first two hours.) Lincoln did surprisingly well at the hospital. 

All hooked up to check his heart. His heart is looking perfect! The cardiologist said I could fly out at the end of the month, no worries. 

During the 2 hour break between appointments I got to visit my favorite pumping room and then we chilled as a family in the cafeteria. It was like visiting an old friend. We knew our way around from spending so much time there before we felt like experts. I think the thing that made it fun today was the fact that we knew we would be leaving all together at the end of it. 

After our long lunch we had our second swallow study. I was way more nervous this time then last, I think I realized this time how hard swallowing can be. Anyways I still think Lincoln looks so grown up in the x-ray chair (even if he is in the 9th percentile for his weight...not good). Lincoln was pretty grumpy and hungry because we had stopped his continuous feeding two hours prior so he would be ready to drink the weird x-ray juice.

Well bad news, Lincoln still can't swallow liquid. It goes right into his lungs. His brain and his swallow muscles still aren't working together. He has improved since last time, but not to the point were we are anywhere close to losing the NG tube. Looks like we'll have it for another month. We have a third swallow study set up for the end of August. Also we have to decide if I should stay behind so Linc can get continuous treatment from Primary's Speech Therapists or try finding someone in South Bend. Our insurance goes till Sept. 21st so it wouldn't hurt us to stay here a little bit longer. 

We got home around 2:30pm (we left the house at 9am) and Ryan had just enough time to help me get Lincoln settled before heading off to work. Lincoln was overly tired, cranky and had tons of issues with the liquid and nectar they had given him for the swallow study. The only time he stopped crying was when I had him on my chest. That made getting anything done today hard, especially pumping.

I needed a little miracle and was given it. The only time Lincoln was not screaming to high heaven was the 15 minutes I pumped. He laid in his bed and just looked around kicking his legs and loving life. Another blessing was my neighbor brought me dinner. I understand why bringing dinners is just a blessing now. Eating tonight was hard due to Lincoln needing to be held, cooking would have been out of the question.

Another blessing was the Moby wrap. I bought this before Linc was born with the hopes that he would love it enough to chill in it during the flight to make our lives easier. Turns out Lincoln loves it and was finally able to fall asleep for a little bit and bonus, I could get a couple things done.  

All in all today was a hard but reassuring day. His heart is healing perfectly, his swallowing has improved and we got some major cuddle time in. I am hoping that tomorrow little man is feeling better.

Can you tell it was a tough day on us? 

What ifs...

We've been home from the hospital for a week and a half now. Since being home I've had more time to process what happened to us. Lots of time I was shocked when people told me that they read the blog and cried. I didn't cry when I wrote it (well just that one weepy day when I was crying over everything from frysauce to surgery). Or they'd tell us how strong we're being. These comments aways baffled me. I didn't write these blogs with the thought "I MUST be strong and make people cry." No I just wrote what was happening so everyone would be aware and we wouldn't have to keep telling the story over and over...although honestly I love telling his story. Now that I'm home and able to sit and ponder on what we've been through I'm beginning to understand. It hits me at odd times how close we were to losing Lincoln and all the other what ifs that could have happened.
What if...I had gone into labor at my house.
What if..my water broke somewhere other then the hospital.
What if..the doctors hadn't known about Lincoln's heart defect.
What if..the bypass didn't work.
What if..his surgery didn't go as planned.
What if...
What if..
What if..

But then I catch myself looking at Lincoln and marveling at all he's been through. Looking at him today you'd never know he has a scar down most of his chest or that he went though open heart surgery and was put on bypass at the tender age of 8 days old. You'd never guess his little body has already had 13 minutes of CPR while most people live their lives never going through that. You'd never guess anything was wrong with him...other then having a feeding tube he looks perfect. He truly is a miracle.

I was looking at my friends blogs and wondering what I should do for his monthly updates. I caught myself thinking I should be paying more attention to his preferences so I could do a monthly update of all the milestones he has met. I'm ashamed to say it but I was starting to worry since his 1 month mark is coming up quick I didn't have anything noteworthy to say about him. Then I remembered all he'd been through his first few weeks of life and realized that he's a miracle and I have a ton to say about it.

His one month post will be coming shortly. Today is just a ramble post. Now for what everyone has been waiting for...pictures.

We couldn't take him to get professional newborns taken so we did our own. 

Hope you enjoy our first try (of many) at imitation photography. 

In this picture you can see his scar and the two little scars from the chest drains. Also his umbilical cord had just fallen off so don't mind that gross bandaid on there. 

We took these photos on Saturday when his NG tube had fallen off placement. We had to replace it so we thought we'd sneak some pictures in before the tube came back. 

The next big thing for us now is a swallow study tomorrow as well as his cardio follow up. Looks like we'll be spending the day at Primary's again. I have to admit I am super nervous for this swallow study. I took swallowing for granted the first time around. We've been working with Linc twice a day since his last study, hopefully he's ready. I know I am more then ready to start working to lose the NG tube.

Home Life

Now that we are home I expect blogging to take more of a backseat. Our first night home was wonderful! This feeding tube thing isn't so bad. We put 6 hours worth of food in it and thus we got 6 hours of sleep...well I had to still get up to pump but still. Lincoln woke up around 5am for his grump time. He is usually fussy around 5-6am but after that he goes back to sleep.

Being home is so wonderful and tons less stress. I love getting up in the morning when I want to not because doctors are coming in and I don't want them to catch me in my pajamas. I also love how lazy it all is. Lincoln basically sleeps all day either in his Pack-n-Play or in the sweet bouncer my aunt Sheree is letting us borrow. I still feel like I can't get a lot done in between taking care of diapers and pumping but I do have time to do a little clean up at a time. Its crazy how much stuff piled up at home and then add that to all the stuff we got from the hospital. It was a lot of clean up. 

Today we gave him his first bath at home and got him all dressed up for church. I am amazed at how tiny his clothes are. When we first got the newborn outfits I was thinking there is no way he'll be that small. Now that he is here and wearing them I'm amazed at how big some of them are on him.

Aftermath of his first bath. He loves being wrapped up tight.

His Sunday Best!

Also you can follow his feeding tube from his nose to the mini-backpack. That is basically it, where ever Lincoln goes mini-backpack goes as well. In fact yesterday we all went out to Smith's to grab a few items that we were needing and it wasn't bad at all. I just wore the backpack and carried the car seat while we grabbed the 3 things we needed. No biggie. 

Last night Melanie & Clayne came over to see Lincoln. 

Clayne enjoyed holding him for the first time. 

I'm Coming Home

Today was the day. It was finally time to send us home. Ryan started the morning off around 5am getting up and going to work at Glenmoor Golf Course. I started my morning off around 6am with a cranky baby. He settled down around 7am and I went back to sleep for another hour before I had to get up to pump.

Once I was up to pump at 8am my morning did not let up until about noon. We had doctors coming in and out all day trying to get everything in order to discharge us. One of the things they had to do was a car seat trial to see if Lincoln could handle being in a car seat. They sent the car seat safety specialist up to check out our rig and make sure we had everything sized and installed correctly.

Lincoln during his car seat trial. He had to sit in his car seat for 1 hour and keep his stats up high. 

Around 12:30 Deanna and her whole crew came over to visit. They had come up for a reunion in Park City and stopped by for a quick visit. It was a good thing it was quick because we were all laughing so hard I'm pretty sure the nurses were going to have to come tell us to turn down our volume. It was so much fun seeing them all, especially my cousin Riley who just got back from his mission in Brazil.

At 1:30pm our home hospital nurse, Dylan, showed up to teach us how to work our feeding pump at home. Dylan is an awesome guy who will be taking care of us until Linc is cleared to get off the NG tube. I don't even have to put in any more tubes if I don't want to. I can just call him and he or someone else will come do it for us.

Finally it was time to go home. We got Lincoln all dressed up. First time wearing clothes in his life! Ryan picked out the outfit and I must say I was impressed with how well he matched it.........

.....to himself!!!!

Family picture leaving the hospital. I felt a little left out. It guess I need to get me some Notre Dame gear soon.  

Lincoln looks so tiny in this. I can't wait to see how long it takes him to fill it up properly. 

All snug in his bed for the night. The red backpack will be in pretty much all of his pictures since that is his feeding pack. Everywhere he goes it goes. 

We are now all under the same roof and loving it. Tonight we took him upstairs and had him lay in his stroller while we all just sat outside. A couple neighbors stopped by to check out the new kid on the block. It was so wonderful to sit outside in the nice summer night air. I am loving being home. 

Just Another Day

Yesterday was a nice relaxing day, mostly because Ryan had the day off so he was up with me from sunrise to sunset.

Ryan's friend Brian Soulier came by to visit. His visit was interesting because he has done some work in ORs for his schooling and so he was very interested in all the medical things.

At 4pm our nurse came in to give us the NG (feeding tube) education. Since I will be Lincoln's primary care giver I was the one who had to learn it all and try it. It was very overwhelming but they taught me well and I believe that I can do it again when the need comes.

Our nurse Laura teaching me the ins-and-outs of  placing the NG.

Placing the NG for the first time. Lincoln was not too thrilled.

Good thing he loves his pacifier so he calmed down pretty quickly. 

Not too happy with Mom. 

After our educational class with Nurse Laura my dad, Darla, and her sister Tam stopped by. Dad was very hesitate to hold Linc but once he got him in his arms he was ecstatic. What a proud new grandpa.

Ryan and I finished the day off by finishing watching X-Men 2. I have found that pumping is more entertaining with movies. Thus Ryan went and got me my home breast pump and so now I sit in my room with a good movie on and pump.