First Halloween!

Let's start with yesterday. "Yesterday was plain awful, you can say that again, yesterday was plain awful, but thats not now that's then" Lincoln had a hard time napping yesterday even though he was dog tired. I finally gave up around 4 and just took him on a walk even though it was threating rain. While we walked I played with my DSLR camera. I haven't really had anytime to play with it since we got it but I'm determined to have the manual mode down before Disneyland next week. 

I have to say I'm proud of myself for my first time really keeping it on manual. This is my favorite walk path. I dream of taking tons of family pictures among these beautiful trees. 

Notre Dame's Basilica door. 

Last night the Village had a pumpkin carving contest. They even supplied the pumpkins and heated tent. It was so much fun to chat while Ryan did all the dirty work. 

 If you can't tell its a Frankenstein pumpkin.

Now on to today. Halloween. 

Lincoln's first Halloween started off rough but then got better and better. 

Yesterday this little guy refused to nap and today it was the same story. He was exhausted yet would not sleep. I let him lay in his crib and scream so I could take a quick shower since I didn't get one yesterday. Around 1:00 I gave up trying to get him to sleep, we had been working on it since 10. The only place he didn't scream was in my arms and pretty soon he fell asleep in my arms. Whenever I tried to move him to his bed he would wake up screaming thus I spent 2 hours holding my sleeping baby. 

At first I was frustrated. My house was a mess, I barely got a shower and ate lunch, I had stuff to do. But then I realized that all that stuff could wait. Lincoln isn't going to be little forever and so if he wants to sleep in my arms for one afternoon I'll just enjoy it. I settled in with a good book and just savored holding my little angel. 

Ryan got home from school around 4 just as the tricker-treaters started coming around. The Village has it all set up. 4-5:30 is Trick-or-Treating, 5:30-6:30 is dinner and then 6:30 on is activities. I really love living here. They make such an amazing effort to get everyone involved and together.

Our little family of super heros. 

 The pumpkins from last night's pumpkin carving. 

This is the petting zoo. Pretty fun for the little kids.

They had a hayride that went around the block. Pretty fun.

I'm so excited for next year's party when Lincoln will be a little more interested in everything. Today he mostly just looked around confused but at least he had a full tummy. 

A Normal Baby

This week has been rather fun. It was Fall Recess for Notre Dame so Ryan had the whole week off. having two parents home really makes life easy. I got a nap everyday with Ryan around....pure bliss.

We did a lot of cleaning and organizing. We are now officially moved in. Well there is still one box left but its mostly junk. I also had a short interview at a children's store. They will let me know next week if I get the job or not...hopefully I will and hopefully they won't mind that I'll be in Disneyland for the first week of work. I'm really nervous about that. I really would love this job.

Ryan didn't get to spend every minute with us during his break. He went up to Canada for a psychology conference Thursday-Saturday. It was my first time being left alone here and lucky for me I know all my neighbors and felt completely safe.

Friday I went to Chicago with Linc-the-Stink for a neurology visit. Since he spent so much time in the ICU and had such bad Apgar scores, he qualifies for this program in Illinois where we get special help to make sure he is developing on track and making sure his brain is doing great things.

When I grow up I've decided I want to be a child's P.T. (Physical Therapist). That lady, Mary Kay, did wonders with him. She got him to do tummy time without crying and he even supported his head and played a bit. She got him to stand up and do a lot of other fun things even when he was past due for his noontime feed. I'm feeling so lucky to have this support. Everything is on track and he's doing great. His weight is still a slight concern, he's only in the 3rd percentile, but we're watching that. Oh it was so good to hear he is a normal baby. I love having a normal baby.

After his appointment we wandered around town for a bit. I love visiting Chicago, the buildings are so beautiful and the energy there is amazing. I doubt I'd ever want to live in a big city though. Visiting is wonderful.

We got home just in time to Skype with Ryan and then head to our Ward Halloween Party. The party was kinda lame since they decided to do it indoors due to bad weather. They didn't have much planned for the kids but they entertained themselves running around in their costumes. Shout out to Aunt Jana for providing Lincoln with his costume this year...any takers for next year? ;)

Saturday Ryan got home and we watched the Notre Dame game, relaxed, and were happy to be together again.

Lincoln fell asleep mid-cheer for Notre Dame. His arms were totally suspended in the air when we found him like this in his crib. Silly goof.

 Lincoln truly is a Normal baby now. Everything is good with his heart and his development. 

My neighbor and good friend asked me to tell her Lincoln's story since she had only heard bits and pieces. I told her the whole sha-bang and realized mid-telling that I dread telling his story. I am ready to stop dwelling on it and move on.

I really dislike how people seem to always ask, "how did you deal with that" or they say "i could never go through that." I'm truly no one special. Everyone in life has hard things they have to get through and they do. Theres really not an option. You have to go through hard things. You do get to decide how you go through them. You can be positive or negative but its not going to change what you have to handle. I choose to be positive mostly thanks to my knowledge of my Savior. I have witnessed many miracles throughout Lincoln's small lifetime and those miracles strengthen me. I truly believe that with God on your team you can handle anything with a positive attitude.

The other thing that bothers me about telling Lincoln's story is how scary it is. I don't want to scare anyone. I remember talking with my good friend Annie while we were both pregnant. We both had the same ideas about birth so it was fun to share ideas with her. Anyways we were shocked at how women are so excited and eager to frighten others. "you were in labor for 10 hours well I was in labor for 20 and my epidural wore off" "you had a c-section well I...." Seriously why are we so eager to top each others stories and the scarier the better? I remember when I was pregnant and women would start talking like that I would tune them out. I didn't need those types of negative stories, especially around something as marvelous as bringing a child into this world. I don't get why we love to complain about childbirth. Childbirth is the most amazing thing. Amazing things take hard work but we don't need to brag about it. I hate how my true birth story is a scary one so I don't like telling it. I don't want to scare others because really my story is 1 in 5000. It's not the norm. I want others to be excited about giving birth not scared silly.

The last thing that bothers me about having Lincoln labeled Miracle Baby is to me all babies are miracles. My Grandma Nelda has such an understanding of this. I love talking to her about Lincoln because she agrees we saw many miracles to get him here and she is happy to just marvel in the fact that babies in general are miraculous. They really are. When you stop to think about it 9 months before they are born they physically don't exist. Procreation is the power of God yet we are allowed to have that power. We literally created life. When people make a big deal about calling Lincoln a miracle it makes other babies seem less miraculous.

Anyways the short story of this blog post is lets just call Lincoln Lincoln and put an end to calling him Miracle Baby and bragging about his miracles. His heart is healed and working amazing. His feeding tube is out and he's nursing like a pro. Lincoln is Lincoln.

Throwback Thursday. I found this picture of me and my Grandpa. I'm so glad everything went well with his heart surgery. I'm so excited for Lake Powell next year. We'll have the whole family together again. 

Lincoln @ 3 Months

The biggest difference between 2 months and 3 months is Lincoln is officially off his feeding tube for good. This has been a big adjustment.

When he was on the feeding tube he never needed to nap. If he got tired he would sleep but he was never cranky about it that has been a big change. Now he needs his naps and he doesn't always like it. Since getting him on a schedule it has gotten easier to figure out what he's trying to tell us. 

Lincoln eats every 3 hours and usually once during the middle of the night. We'll put him to bed around 10pm, wake up once around 2-4am, wake up at 6 and then sleep until 9am where he'll eat again then get up. 

Lincoln is all smiles now. He's also discovered his hands and apparently they're the greatest thing since sliced bread. He loves sucking on them as well as his arms. 

A couple things he loves are: baths, bouncing in Daddy's arms, eating, and being the center of attention. If we're distracted he'll coo and grunt until we look at him.

Linc loves to swing in front of the window and admire the lovely fall colored leaves outside. 

A couple things he doesn't love: cuddling, the camera, dirty diapers, having his hands swaddled and being tired or hungry. 

The cuddling thing has really saddened me. When we hold him up to our chest he will make his back rigid and stay away from our body. I'm hoping he's just working his belly and neck muscles and it will pass. I miss my cuddly newborn. 

He also hates taking time to burp during feeding. 

We love our little Lincoln. 

This little man is all ready for the Notre Dame vs BYU game. 

Linc loves the water. I can't wait to take him swimming. Notre Dame offers a swim class starting at 6 months and I think I'll try it out.

Grandma Nelda got us this carseat cover. She knew how cold winters would be here. 

Sometimes we don't let Dad study as much as we should. 

Lincoln loves his Daddy.

Linc at 3 months:

Weight: 11 lb 11oz

Height: 24 3/4 inches 

A Perfect Day

Happy 3 months Stinky Linky! As a gift to us Lincoln gave us the perfect day. Oh it was glorious. I have to brag about it now so when other days are horrible I can look back at this and remember that it can be done.

Since his tube has been out Lincoln has turned into a typical infant. He cries when he's hungry, he cries when he's tired, he won't go down for a nap and then he cries some more. He cries a lot these days. This has been a harsh reality check for us, me. With the tube in he only fussed when he had a dirty diaper and he would take naps as he pleased but I never felt like he needed them since he never fussed. Oh boy was I in heaven there. Welcome to the real world.

These past couple days have been rough. I'm so grateful for a loving husband who is willing to come home from working all day at school to take over for me so I can get a break and get something done. The apartment has really been a disaster and I barely showered. Ryan is amazing.

I'm also so grateful for this community where we live. One of my neighbors does a weekly girls night. We get together after the kids are in bed, most of the girls have their baby monitors in hand, and just talk and be women, not moms. Oh its glorious. The women here are very close. They've all reached out to me from the beginning and I've never once felt like an outsider.

Anyways with all this real life we've had to get Lincoln on a schedule so we can better understand his cries. (With the tube he really never fussed, never) I've discovered how important it is to stick to the schedule as closely as we can. If the morning doesn't go great the rest of the day suffers. If the evening doesn't go great bedtime is a nightmare.

Our schedule is pretty easy and its been working on and off but today, today was the best day ever. It went perfect. No hitches. I even got my visiting teaching done and dinner cooked. I love schedules.

Nap time came easy. He'd get a bit fussy, rub his eyes, tug his ear and I'd hurry and put him down. He'd fuss for a few minutes until he realized he wanted to sleep and then he'd be out. Lincoln even slept for an hour each time. Up until today he'd only take an hour nap maybe once a day.

Feedings went the same. Lincoln got hungry when we expected him to and he would eat the whole time. We've had issues with him falling asleep mid-feed and then getting mad for waking up and being hungry.

Today was a perfect day...and to end this perfect day we did his 3 month photo shoot and he was a happy baby. Oh what a day.

A Big Day

Yesterday wasn't a planned big day it just kind of happened. I was getting Linc ready to go to Craft Day at our community center around 11am yesterday when his pump started beeping and showing "no flow" meaning it was clogged somewhere. I pulled him out of his carseat and started the normal check. The pump wasn't clogged, the extender wasn't clogged that meant his actual feeding tube was clogged. I tried unclogging it a couple times but it looked like it needed to be replaced. So I got all my materials together and went about replacing it.

I've replaced his NG tube more times then I can count so it is a normal no big deal thing to me now. Anyways I get the new tube in, the one we got from our Home Health Company here, and I go to check placement (making sure its in his stomach and not somewhere else) and none of the syringes that we have fit into the opening. So I frantically run to his bedroom to get his box of medical supplies, his tube is in his nose but not taped down anywhere so he's mad. I go through all the syringes we have and none of them fit. I then decide to check if it will even fit on the pump, no go. So I pull it out and comfort my very upset baby. I call the H.H. Company and they inform me they can't do anything about it until they get an order from his doctor. If anyone has worked with the health care providers you know everything takes a long time. I informed them how important this is since its the only way he's been getting nutrients and they promise to rush it. This means that it will be done by the next day but no sooner.

I decide to make the best of it and since I missed craft day I went to a local breastfeeding support group to get some of my questions answered.

BACK UP. .. Monday of this week we had a swallow study at our hospital here in South Bend. I was super nervous and yet excited for this study since I knew he had improved a ton since the last one. This swallow study was great. He passed with flying colors. The technicians told me I could go ahead and start nursing him once or twice a day until we talked with his doctor and came up with a solid plan.

At the support group Linc's doctor called and asked me what I wanted to do with his swallow study report. I kind of get the feeling that she doesn't do a lot with feeding tubes. I told her I wanted to nurse him and not do any more bottles. I then explained the tube debacle that happened and she told me that she would call them and get my supplies rushed over but I could try nursing him through the weekend and then on Monday I would go to an appointment with her and discuss what to do from there.

I totally started crying at the support group. I was thrilled. She had just told me to keep the tube out and nurse him. This is what I've been praying for since he came home from the hospital. The support group has two Registered Nurses who answered all my questions and helped me get him eating correctly.

Yesterday was a grand day of nursing. He and I did great. I was terrified for the night though. He was eating every 2 hours during the afternoon and I was nervous that would continue. We put him to bed around 10 like always and he went right to sleep. Around 11:30 the fire alarm started blaring. Everyone in our building had to go outside and wait for the fire department to come shut it off and check the building. Lincoln slept through the whole thing! In fact Linc slept through the whole night. I woke him up at 4am to feed him since I needed to pump. He woke up just enough to eat a meal and went right back to sleep til 7. It was bliss! Lets hope it continues.

Long story short: Linc is off his NG tube for the time being. Woot Woot Linc!

The Time Has Come

The time has come to take this blog private. I have always been hesitate to post certain things online and I want to be able to talk about everything without fearing about who will be reading it. Thus if you want to keep reading you'll need to email me for permission. I'm open to all who want to read I just want to know who's reading.

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.