Processing

(Imagine is of Liam holding a brand new toy. His first Ugliest Pet Shop toy, taken Fall 2015)

          Liam's passing was hard on everyone. It was hard on us as parents. Hard on his sister and other family members. It was hard for our church and our friends. One group of people I've not really written on is the preschool kids and families. Yes it was hard for them.

          Liam started out the 2015-2016 school year with his class and gained a class of friends. He got to know them and they got to know him. Everyone was his friend. The parents also got to know Liam because we were all required to volunteer at least once per month. They got to see his smile and his crazy antics. Liam loved to make people laugh just as much as he loved to laugh. They got to see him grow and develop and change before their eyes.

          Then one day we threw them for their first curve ball when Liam showed up on oxygen for the first time. All the parents looked at me questioningly and confused. All they saw was this little boy, seemingly normal but smaller than the rest of his classmates. They had no idea he wasn't normal, or that he wasn't healthy. A few parents even had the courage to ask me why he needed oxygen. It was then, on that day, that I stood in front of a room full of Liam's classmates and parents and revealed the truth that Liam was special.

          I was scared to death as I drove him to school that morning. I was worried that the other kids would look at him like he was a freak. I was scared they would make fun of him and shun him. I was frightened to my bones that Liam would become self conscious. I had worked so hard to make Liam proud of his scars and his "button" (feeding tube), and comfortable with wearing oxygen. We just began to not have to tape the nasal cannula on. I didn't want all that work and progress to be ruined.

          I stood in front of this large group of kids and parents and explained that Liam's lungs didn't work as well as our lungs did. I explained that the big canister following Liam around held oxygen that we need to breathe. I explained how the tubing from the canister to his nose allowed the oxygen to travel from the canister, into his nose and into his lungs. I explained that Liam's lungs just got so tired sometimes that he needed a little help breathing. Then I stood there and waited for the questions.

          I stood there as the children stared at me, processing what they heard. I stood there as the parents held their breath and waiting for their reaction. Then tiny little hands flew up in the air.

"So he needs that to breathe?"

-Yes

"Does it hurt him?"

-Not at all. It just helps him.

"So he has to wear that thing on his face and stay with that thing?"

-Yes

"So that makes him like an astronaut!!"

I just stared at them letting that sink in.

"That's so cool. Liam's an astronaut! He's so cool!!!"

          I could have cried right there on the spot. I wasn't expecting that reaction. I looked up at the parents and a few smiled back at me. I didn't know what to say. I just smiled at them. I realized something in that moment. Little kids are so accepting of things that are different. They want the facts because their curios. Some stare because they're just trying to figure it out. Not one kid in that room said a negative thing about Liam being on oxygen.

          When it came time to go for outside play, I worried again. There was no way he could run around. I wanted to keep him inside but his teacher easily came up with another alternative. She took building blocks outside and sat Liam at a table. He happily build whatever his mind could think of. All  the kids took turns hanging out at the table with him because they didn't want him to be alone. Each took turn sitting right next to him. He was the happiest boy in the world at that moment.

          Liam going to school on oxygen the first time was nerve wrecking for another reason. I didn't know how his teachers would navigate moving him from one station to the next with the tank. I stayed in case they needed my help. Like the amazing people they are, they quickly figured out how to move him effectively as well as check the flow setting on his tank to make sure neither he no the other kids changed it. They knew the moment he got pale to either grab me if I was there, or call me. They knew the moment he was quiet that something was wrong. Because of their willingness to learn Liam's needs and work with him, he was able to attend school and effectively learn.

          Liam went from seemingly "healthy" to sick and needing oxygen quickly, but no one ever expected the phone call I would one day have to make. The phone call to inform them of Liam's sudden passing. That morning I had called to explain how I was keeping him home to take him to the doctors. They wished him well and asked me to keep them updated. The next day I had to tell them that he was gone. Class was in session already. I know it wasn't something they wanted to hear let alone get the news while trying to teach 27 other littles. I know it was hard for them to tell the kids what happened and to tell the parents.

          I know the parents held their babies tighter and did their best to explain what had happened. I know because so many times I've read about the passing of a fellow CDHer and held my son tighter as I fought the tears unsuccessfully. It's a pain that sticks with you but hides away until something triggers the memory. Seeing me, or hearing his name probably triggers their pain all over again.

          Since Liam's passing, I have become Facebook friends with several of the parents of his preschool friends. I've watched as they've changed so much over the last year. I attended their preschool graduation, where I watched every one of Liam's friends walk across that stage for their metal and diploma. I clapped proudly for them, even as I broke more inside because Liam wasn't with them. I saw pictures from their first day at Kindergarten as their parents dropped them off at school. Those proud faces smiling back at me through the computer screen. I've watched as they've grown taller and their personalities become more developed. I see them every day I pick up my daughter from school and they smile and wave at me. "Hi Ms Aubin!" they greet me as they walk past.

          I watched as each one turned 5 and parents posted pictures celebrating. And now I watch all over again as they each turn 6 years old. It's bittersweet. I'm happy for their parents that they don't have to know the pain of losing a child, but I'm broken for myself as my son will forever be 4 years, 5 months and 1 day old. I see some of their sad smiles when they look at me. Most choose to "ignore" me until I'm within a certain distance. I know it's hard for them to see me and that they fight their own demons each day. It's hard for me too. Some days I pretend I didn't see them. I don't want them to go through it all over again. Other days, I just stay in my car and hide so they don't have to see it. The few that do say hello in passing or actually attempt to talk to me, I make a huge attempt to put a smile on my face and pretend that I'm happy even when I'm not.

          I hear the emotions in their voice. I hear when their voice cracks. I see the tears build in their eyes and the look that they want to say more, but aren't sure it would be ok. They struggle with the mentioning of their children, like they aren't sure they should. The conversations always start out awkward and most end awkwardly, though I try to ease their fears.

          I struggle every day with the loss of my son. I want people to remember him. I want people to be able to talk about him with me. I want those preschool parents to not be afraid to mention their children to me. Yes I went through hell, but I can also celebrate the living. Sure the celebration or joy is much more muted than it was before I lost Liam, but you can't expect me not to be changed. I struggle every holiday not to sent treats to every kindergarten class that has one of Liam's preschool friends. I don't do it because it seems so weird. I don't send treats to the new crop of preschool kids for that same reason.

          I know that I'm probably already labeled that weird mom, you know the one who lost her son. After Liam passed, it seemed that news spread very quickly through the school and to the parents, Whether they knew Liam or not, they all seemed to know. When staff members started wearing CDH awareness shirts with Liam's name on the back, I'm sure lots of parents asked why. They still wear the shirts every Thursday so show their support and their love. To this day, parents all look at me weird. Before, I was just another mom at pickup. Now I'm that mom who lost her kid but still has to come pick up her other kid. Many times I've even heard hushed whispers. They weren't quiet enough for me not to hear them. One mom even tried hard to get me to rejoin PTA. Three days she asked me and tried coaxing me. When I laughed and said I'd never rejoin PTA again, she stopped trying. She never said a word to me again or even waved hello. That probably solidified my status as the weird mom but I don't care.

          Losing a child changes you. Things you once thought were important, you begin to see as a waste of time. Your time becomes more precious and you refuse to waste any because you know just how short life can really be. I understand why people avoid me. They just don't understand why I avoid them. Some days seeing Liam's friends causes so much pain that I can't handle it. Watching them celebrate birthday's seems to be the hardest. Some days I watch them walk in their little straight lines at the end of the day and just think how Liam should be right there with them. Some days the tears fall, some day's I can keep it all in. I don't expect anyone to understand what I'm going  through. It's safe to say that I only expect them to hug their children a little tighter each night like I wish I could do to my son.

          

Sue and Liam

5 years ago today, we traveled back to UCSF for follow up appointments. A clinic for kids born with CDH ran by the specialist that treated our babies in their NICU. I went in praying for good news, but knowing in my heart that we would receive bad news. One day I will learn to trust my heart (or gut) because the news they gave us brought me to tears.

5 years ago today, I sat in a room with 3 CDH specialist and listened to them tell me that my son was failure to thrive. They told me he wasn't gaining weight properly, and that he needed a feeding tube. Despite exhausting myself in an attempt to get Liam to eat and gain weight, I had failed. I felt that I hit rock bottom. I had failed as his mother. The specialist tried to tell me it wasn't my fault and that they could tell by the detailed records I kept of his feeds and meds that I had done more than any normal mother. I had, at some point, stopped being his mother and became his nurse. It was how I coped with my PTSD and anxiety, After it was set that we would once again travel to UCSF for a feeding tube, we left. I felt broken. Broken and hurt.

There was something we couldn't leave SF without doing.  We couldn't not stop and see our favorite NICU nurse and primary Sue. We had to take Liam to see Sue. Sue became like family to us while we were in the NICU. Liam and Sue had a special bond. Liam loved to fake being asleep (under the paralytic) but when Sue would turn her back to him, he would open his eyes to try and see her and he would smile. Before she turned back around, his eyes would close and he would be back to pretending. I tried to tell her but she said he couldn't be awake because they had him under the paralytic. She'd turn her back and his eyes would fly open again. I could swear he was laughing at her. Finally she believed me and sat there staring at him for so long, he couldn't help but open his eyes. We all had a great laugh. Of course after that they had no choice but to increase his paralytic.

When Liam would cry, she would place her hand on her hip, shake her finger at him and say "hey! there's no crying in baseball!". Liam would stop crying and smile at her. She knew that when he didn't stop crying that things were serious. In the picture above, Liam is snuggled into Sue's arms, happy as can be. Shes softly talking to him, telling him what a good boy he is. He of course, smiled at her. 

As Liam grew, I would tell him about his NICU nurses Sue and Cindy. I'd show him pictures of himself as a baby and he'd say "awe cute baby". When he found out it was him he'd say "What!? No! I no baby" and I'd laugh. I would tell him how amazing his nurses and doctors at UCSF were and how they "fixed" him. He was always so proud of his scars. 

Thanks again Elizabeth Nelson and Nayeli Faith Foundation for helping us make this trip and this memory possible. The Nayeli Faith Foundation helps families with kids at Ucsf born with CDH. They help with parking passes, food cards, hotel rooms, gas cards and more. If your looking for a foundation to donate too, this is a good one. Check out their Facebook page for more of the good work they do.

Surgery Tomorrow

Tomorrow is the day. Liam must be at Children's tomorrow no later than 7am for his scope and possible relocation of his gtube. We have to leave at 5:30a to make sure we get there on time. I'm nervous that Liam is going under and nervous that he's most likely going to have to have another hole cut into him. We need to do whatever we have to to stop the pain he's having now though. We also need to be able to use the feeding pump again at night. It's that moment of complete and utter "my hands are tied and there's nothing I can do" kind of situation. To top it off his allergies are bonkers again causing his asthma to act up. Please pray for Liam and pray that the doctors make the right decisions. Thank you ❤️❤️❤️ #cdh #cdhsucks #surgery #gtube #tubie #spoonie #feedingtubeawareness 

Taken last night when Liam woke up crying in pain saying "my belly button hurts". Breaks my heart 

Go Away Tubie Go Away

(Pictured in Liam with his first post NICU feeding tube featuring tagaderm cut into the shape of a heart by me because this was the first NGtube I ever put in)

Tube feeding.

Not the hardest thing I've ever had to go through with Liam.

But I still cried when they said Liam was failure to thrive (FTT) and needed a tube.

3 years and 3 months later and it isn't getting any easier.

Liam ditched the NG just about a month after receiving it and "upgraded" to a Gtube.

He then went from a Gtube to a GJtube and back to the Gtube.

Last week Liam started crying over Gtube pain.

I rushed him to the GI because I thought it was infected.

I was told it didn't look too bad so we just did antibiotic creams.

That was last Wed.

Thursday I changed his tube out for a new one.

That badly irritated it and caused bleeding and worse pain.

Liam hasn't made it through a whole 3 hours of school because of the pain.

He doesn't go an hour and a half without crying in pain.

Today I called GI back and explained the situation.

She (Brittney) said that we need to try oral antibiotics.

She called our main GI and he said that if the antibiotics don't help within the next 3-4 days that the next course and to try a different type of tube.

I explained that that wasn't possible because the AMT mini one balloon-less button has been the ONLY button that worked for him.

She asked why the mickey didn't work and I explained that the balloon hits his pilorex muscle causing him to vomit.

This concerned her immensely.

She said that means the position of the tube is too low and that it needs to be moved higher.

So the conclusion is that if the antibiotics don't work that Liam will need to go into surgery to have his stoma closed and a new hole made for the tube.

I don't want this.

I don't want him to have to have surgery.

Yes I think he needs it.

I think this is the right move for him and it will help.

I just don't want to have my sweet boy have to go through surgery again.

As a mom I want to protect my little boy.

I want to keep him from pain and to keep him happy.

I'm scared for him.

Click Click Click

Those are the sounds of Liam's little tongue.

Sounds that we worked hard to get him to make.

Sounds we weren't sure if he'd ever figure out.

But now,

At 3 years old as he sits besides me,

smiling bigger with every click of his tongue.

I of course smile back because,

duh I'm happy.

Every little noise,

every new word learned,

every jump,

every breathe,

means we won.

We won and CDH lost.

Every day we are tackling those hurdles,

and finding a way over,

through,

or around them.

Every day is an opportunity to overcome.

Every day is an opportunity to smile,

and laugh,

and live.

The CDH community has been faced with so much loss lately.

It hurts.

I may not know these people,

the children,

these babies,

personally,

but it still breaks my heart to see the loss.

To see their pain.

Their journey in finding a way to make this work for them.

It's a continued reminder of what we could have lost.

What we still can loose.

That things change at the drop of a hat,

the change in the wind,

from one breath to the next.

I would love to be secure in the fact that my son is 3,

a survivor,

and will always be a survivor.

But that doesn't make him untouchable.

There are a million things in life that can go wrong.

All I can be confident in is that I have this day,

this moment,

this breath.

That's all any of us can be confident in really.

Don't take for granted the little moments that make life worth living,

because one day you won't have those moments,

and you'll wish you enjoyed them while you could.

(Image is a pic of Liam receiving a flower from his cousin Chass, reminding us to take the time to stop and smell the "roses")

Want more of Liam? Checkout his facebook page

Daily Struggles

While getting ready for school Liam seemed excited to go. On the way to school I tried to have a conversation with him. I asked if he was excited for school today. He said "no". 

I was confused. He's never said no to school. I asked him why not. He mumbled something that sounded so very close to 'I don't wanna talk about it'. 

I turned the radio off after that so I could hear him better. I asked him again why he wasn't excited for school. He responded "I don't like it". 

Huh?! What?! Since when?! 

I left it alone and finished the drive to school. 

Once at school he was super excited about being there. SMH so confusing. All I can gather is that he just didn't want to talk. He was probably still tired. 

Liam's speech is getting better but I'm unsure if the words he says are what he means. At times it seems there is a wire crossed in my brain. Things come out that just don't make sense. 

Other times Liam's words and the meanings are clear as day. Like when he really wants something and I'm hesitant to give him it he says "pretty pretty please I have ______?" It's pretty clear what he's saying and what he wants. 

Liam is like a puzzle or sometimes a brain teaser (a really hard puzzle meant to exersize your brain). You have to have a decoder ring to understand what he's saying and what he really wants. 

At times it can be very hard. There are days when he talks it's so jumbled and unclear I have no understanding what he wants. It's frustrating what he wants. On those days I get eye level with him and ask him to say it again. Even then, many times that tactic doesn't work. He ends up mad and angry and frustrated. I end up mad, angry and frustrated. We will both be in tears over it. I have to ask him to grab or point at what he wants so I can understand. But there are days that doesn't work. 

Some days it seems that not only is gibberish is all that comes out of him mouth but his brain has issues processing what I'm saying. If it's over something in the kitchen we will end up going through every cabinet, the fridge and snacks just in hopes to find what he's asking for. 

Some days everything is "no". No matter what it's no. He will ask for something (say fruit snacks) and when I had them to him it's "no" he doesn't want them. 

Liam is the hardest puzzle I've ever tried to put together. I know him better than anyone and I still get stumped. Some days he's just so hungry that he can't decide what he wants or he can't think clearly or have the energy to clearly say what he wants. It took me a long time to figure this out. On these days where nothing makes sense, he gets an extra bolus. 

He then gets angry at me that I'm bolusing his feed instead of getting him something to eat. But after we try 10 different foods it's time to throw my hands up and admit defeat. After the feed he feels better and has more energy and his spec his even clearer. This isn't always the case but sometimes. 

I thought that nothing could get more confusing than when he couldn't speak but I was wrong. These days we are both frustrated beyond belief. This frustration opens up the blood gates. All my anger with CDH pours out like a chink in a damn. Once cracked it fails to hold in the water. 

There've  been days when Liam and I hold each other tight  and cry out our frustration and anger. Some days it just needs an outlet. We both feel better after a good cry. 

I curse and cuss CDH for what it's done to my son, to our  family. For the struggles we go through on a daily basis. 

All we want is a little happiness. A chance to forget about how shitty CDH is. We didn't ask for CDH to strike our family. We didn't ask for the pain and misery it brought us. We're just trying to find a way to make it work. Because that's what we do, we survive. 

Potty Dance

I never thought that at the age of 3 my son would still be in diapers. 

My daughter started potty training at the age of 1 1/2 and was fully potty trained by age 2. 

Obviously we couldn't start potty training Liam at the age of 1 1/2 because, for starters, he didn't walk until right before his 2nd birthday. He hasn't been able to communicate with us verbally until recently. We tried once before, this last spring, to potty train but Liam didn't understand it. 

Now it's clicked in his head what the potty is and what your supposed to do with it. 

Yesterday I happened to be in the bathroom using the potty (TMI) when Liam walked in. He asked me what I was doing so I told him. I saw this look in his eyes like something clicking together and so I asked him if he would like to use the potty. 

Liam got so excited. He clapped his hands and said "yay potty". And sure enough he used the potty! 

This was yesterday evening, right before his shower. After his shower I asked him if he'd like to use the potty again. And again he was excited. He had used the potty successfully twice before bedtime. 

Today I've kept asking him if he had to use the potty. He successfully used the potty 5 times before 1:30pm. One of those times he even went #2. (Again I know TMI)

Liam was rewarded with plenty of cheers and high fives. This last time he didn't want to stop playing but did without a fight and was rewarded with a sticker. Boy does he love his stickers. 

Today hasn't been accident free, and I didn't expect it to be. I also don't expect any of the days to follow to be accident free. In fact, he's still wearing diapers because he isn't going 100% in the toilet. In fact we've still had several full diapers. 

I feel like starting potty training and immediately changing him into undies would be too big of a change that he just can't handle or process right now. The last time I tried to potty train Liam I immediately put him in undies and that resulted in both of us being frustrated. Today hasn't been frustrating in the least. 

We've been celebrating his accomplishments in using the potty and I think that's going to be our key to success. Just letting him do it on his own time, but reminding him to go. I'm very proud of him and how well he's been doing so far. I don't expect this to be smooth sailing. What I do expect is many accidents and weeks of failing until he gets it down. My expectations aren't high, they're reasonable and reachable. 

Surviving through the horrible threes

We've all heard of the terrible two's. Most of us are even warned of just how terrible a child the age of two can be. But were you aware of the horrible three's?

I never heard of this until my son was 2 1/2 years old. My daughter went through terrible two's and we both managed to get through it unscathed. Things were fine until she was about to turn 6 years old. Now she acts more like a 16 year old  during THAT time of the month!! But that's another story. 

No one warned me of just how bad a three year old could be. Not until it was too late. My sweet loving little boy? Really? I doubt he could turn into a monster. Not the same boy who even at age two acted as if he was a one year old. He hadn't even gone through terrible twos how could it get worse? 

Well right around his third birthday so many things changed. His attitude was a major one. My sweet little boy turned into a monster over night. I say that figuratively although in the midst of a three year old fit I have my doubts. I am shocked every time he has one. 

If he doesn't get that toy (or 100) he wanted in the store he throws a earth shattering scream at the top of his lungs people looking at me like I hit him kind of fit. My jaw will instantly drop to the ground in utter shock. Could this really be happening? Yes yes it is. 

Those kids that's come through my line when I was younger and didn't know better, the ones that cried and screamed because their parent refuses to spend a few dollars or even less on something they wanted. I couldn't understand why they didn't just buy them what they wanted to avoid that outburst. I mean really what's $1 gonna do? It'd give you peace and quiet. 

Oh how naive I was back then. I mean seriously I thought those were one time incidents so I figured why not just spend the $1. I saw no harm in it. I told myself that my child would never behave that way and that I'd spent the $1 for peace sake. 

Boy was I dumb! Young and dumb. Younger me was so naive. My kid has been that crying kid in a store because I refused to purchase a dollar toy. I fact it just happened 3 days ago in a dollar store. I refused to buy Liam a cheap train with tack because it looked like it would break before ever getting it out of it's package. I felt it a huge waste of money so i offered him match box cars instead. 

What happened? Screaming at the top of his lungs. I was shocked even though it has happened before. Instead of handing him the train and buying it I walked away from the toys and checked out. Nope I was sticking to my guns. Why? Because he does this every time we say no. 

I finally realized why those parents would tell their kids no and it would lead to melt downs. This was the reality. All kids throw fits. All parents either stand their ground till the child learns or they give in and this behavior continues. Seeing as how I want the behavior to end, I refuse to buy anything when the fits start. When I say no it's no. Not throw a fit and I give in. 

I finally understand that this isn't being mean. It's called being a parent trying to teach their child how to become a thriving well adjusted human being. How would I look at age 31 throwing a fit in the store because I couldn't have that Barbie doll? Ridiculous and crazy right?! Well that's what we want to avoid.

Granted he's still my sweet, loving, oh so adorable son. He just throws fits. Now to clear the air, this doesn't happen every time we go into a store. In fact I was able to take Liam shopping with me the other day and we just so happened to walk down the toys. I thought I'd test his restraint. Mean right? Not really. He needs to learn and I was walking down those aisles with purpose that did not include a new toy for Liam but a present for someone else. He kept saying things like "Oooh cool" and "look mom look cars". I would very gently tell him "No Liam we aren't buying that today" and was blessed with a drawn out "okay mommie". His voice was a little sad but he understood that today was not the day.

After walking down every toy aisle without one fit whatsoever I felt relieved and so so proud. I even wanted to reward him for his restraint so ended up buying him 2 .97cent hotwheels cars. I should of had more restraint but he had been so good I thought he earned it. These are the behaviors we want to reinforce right? So whats the harm in rewarding him for being good? I can't tell you if the reward helped or not because me being me reverted back to my old ways of giving him what he wants while in the store then discretely asked the cashier to hide them from him sight because we didn't want them.

I think the biggest lesson here is that our behaviors can and will cause our children to behave a certain way. As parent's we should stick to our guns and not buy our children everything they want but reward them when they do good. This is a hard lesson to learn, and the habit of spoiling our children is hard to break. That being said I spoil the heck out of my kids. Why? I thought that was what parents who love their children do. That's simply not true. You can love your kids and not spoil them to the point of disaster.

I guess now that Lanie is 6 and Liam is 3 I'm finally catching on to this disastrous behavior. With the recent developments in Lanie refusing to clean her room, Liam telling me no, and me having to clean up after them I'm realized I did it all wrong. Birthday and Christmas presents have always been 10x bigger than they really needed. The random buying of toys just because hasn't helped. In fact it's done my bank account some damage. Why am I broke all the time? Because any bit of pay that doesn't go to bills tends to go to toys, new clothes, new movies and books. Whatever they want.

I'm not saying laying on doing them stuff for one month will make a big difference because it won't. But when you look at the long term effect of these habits it's just shocking how much money is basically wasted. I am highly guilty of spoiling my kids and going without to get them whatever they want not just need. The light bulb went off in my head yesterday and I realized that I've been doing wrong all  these years. Sure my kids love it but where has it got me?

Broke and having to deal with huge fits being thrown when I say "No" to buying something for Liam or Lanie (but mostly Liam). Starting now I'm going to try to change these habits and see where it gets me. The money I would have spend on something they wanted is going into a jar and we will see how much I can save up. Hopefully I can re-teach my kids and fix the issue of the colossal fits. 

Beauty In The Past

          I was on Facebook just looking at post as normal when I saw a beautiful post by the page Neonatal Intensive Care Awareness Month about Kangaroo Care. They posted a picture of a mom holding her baby with as much skin to skin contact she could without being completely topless. In the comments a few other moms whose babies where in NICU commented with pictures of their babies when in NICU using the same Kangaroo Care technique of skin to skin contact. One of the pictures was a baby born at only 24 weeks. The baby was so tiny it (the gender wasn't posted) fit in the plam of her hand. The baby had to of weighed less than a pound.
          I found this picture (as well as the others) to be very endearing. To me it spoke of courage and strength for both the baby and it's mother. I showed my husband and he had a complete different reaction. He asked me why I keep reading depressing stuff like that article. I explained how I didn't see this as depressing. Yes at one point I would have but I've long ago lost my anger for our NICU experience. I explained how I felt this picture was beautiful and that it told the story of survival and the will to fight. It told the story of a miracle that a baby so tiny could survive being born at only 24 weeks.
          He said again that it was depressing and that I needed to stop looking and reading things like that. He felt that it was only a reminder of what our son went through and how he's not "normal". My jaw hit the floor. I don't need a reminder from other peoples pictures and stories that my son isn't "normal", how could I forget? But what I see when I look at him is the miracle that he is. Every breath he takes is a miracle for the baby that wasn't expected to live. Every smile and every laugh is a reminder. After years of struggling with this, I've finally reached a point where I can see the beauty in the struggle. I can see past the tubes and wires. I can see the blessings in the midst of the struggle. And that I feel is the key to moving on.
          Just because you move on doesn't mean you can't visit the past. It doesn't mean you have to forget what you've been through. Every trial we face molds us as are we are today. It just means you can look at it differently than you did back then.

There beauty in the fight. He may be laying here sedated but he's fighting for every second. The fact that he has the will and strength to fight is just plain beautiful.+

One of the first times Liam was allowed to be fully alert and awake. Staring into his eyes and having this moment meant the world to me. It was beautiful.

Big sister Lanie meeting her little brother for first time. This picture speaks volumes. It tells a story of a girl who has been waiting a long time to meet her baby brother and to love him. It a story of acceptance and un-ending love.

This picture tells a story of a mother who waited what felt like eternity to hold her child. She sat by his side day in and day out, supporting him just for a chance at this moment right here. The way she looks at her son with such love and devotion. The way her hand it placed tells how gentle shes being so not to hurt him as well as how much she can't believe this moment has finally arrived.

These pictures tell a story of strength and survival, of never ending love and devotion.

Now tell me these pictures aren't beautiful.

I love my son for who is and what he went through only helped him develop into the gentle, caring, life loving kid he is today. Our story is beautiful. Plain and simple.

TBT July 24 2011

#tbt #timehop wow 3 years ago Liam was in the NICU and I was so excited that I got to change his diaper for the first time on my own. It was also the mark of when I healed enough from the csection that I could put on jeans and wear real clothes. I was 4 1/2 hours from home in a city I knew little to nothing about. It was a Saturday when justin, Lanie and my mother in law came to visit. We took off walking in hopes of finding a store with reasonable prices clothes since all I had were sweat pants that started falling off me. We walked down Haight street just looking. We were about to give up when we ran right into the GoodWill, only it didn't look like any GoodWill we'd ever seen but a nice shop. That day I scored a few pairs of jeans and some tops and sweatshirt. We also scored a few books for me to read to Liam.

So why is this relevant to our CDH Journey?

From the very minute I found out I was pregnant with Liam I had to overcome situations, fears. When Liam was born sick so many things were thrown at me. I had to overcome my fear that he wouldn't make it and have absolute faith that he would. Yes there were moments when I had my doubts but I'd push those aside and think of the good. I had to overcome my fear of being alone in a city I knew little to nothing about to survive. I had to break through my shy quietness and stand up for my rights and my sons rights. 

If I was going to survive on my own I had to figure out how. If I was going live this new life and make the most of it I had to learn. I had to walk a mile alone on hills to wash my clothes. If stuff the dirty clothes on bags then into my backpack with soap and walk to the laundry mat. Then I'd have to sit there alone surrounded by strangers and wait while my clothes went through the process of washing and drying. Then is have to fold them and place them in my backpack and walk back to the hospital where I slept in a sleep room with 8 other mothers whom I didn't know and put away the clean clothes in my suitcase. There was no privacy. Something I ALWAYS had to have. 

I had to get over it and realize that this was it. This was my new life, our life. At some point I resigned myself to thinking that this was what our life would be from now on. I clung onto the simple things like routine. The doctors and nurses had a routine for Liam and I had a routine along with them that flowed perfectly. 

At one point even that changed as we were finally approved to live at the Ronald McDonald house and justin and Lanie could come and stay permenetly. Again I had to improve and chane the routine until we got one that worked. It was easier to accept that this was it. Our family was together and complete. 

Anyhow. Today three years ago marked the day things started to get better. The day our story started changing from one of tragety to one of success and inspiration.  Just 3 days after his repair surgery and the beginning of great things happening. 

Throw Back Thursday 5/22

Throwback Thursday where we go back and visit memories. 

1 year ago yesterday:

Liam's first time trying a churro. He lived the cinnamon but not the bread. Presently he loves bread. 

2 years ago last Tuesday:

Liam was hospitalized at Children's and was on oxygen 100% of the time. 

Thank you TimeHop for taking us down memory lane! 

Amazed

Today is one of those days were I'm just reflecting on the miracle Liam is. He's come so far. Liam was never expected to live yet here he is breathing, walking, talking. Why he survived when others didn't ill never understand but will forever be greatfull. 

NICU 2011 post ECMO, post repair surgery. 

Playing his puzzle games 

Morning breathing treatment 

All smiles

Getting ready to pick up sister from school

Breathing treatment this afternoon 

He fell asleep during his treatment. 

(All pics but NICU were taken today)

Liam doesn't let chronic lung disease or tube feeds slow him down. He is a fighter. He loves life. Everything amazes and excites him. It's amazing to see the world through his eyes. 

Flash Backs: Oxygen

Where we live you can see the Medical Hellicopter fly into the hospital and then fly away transporting whoever. It's very sad. They have a distenctive sound, unlike other copters. They fly right over our house and every time all we can  think is that there could be a baby fighting for its life on it. It's very sad for us. Our next thought was Liams last flight to UCSF how we stood there was watched them fly away with our baby boy and how long it would take us to drive to UCSF through a storm to get to him. It was a 5 hour drive through heavy traffic and heavy rain. The Bay bridge had flooded earlier that day and had been shut down for awhile. When we crossed it there was still lots of water on it as the rain beat down on the car. It was pretty scary. We didn't get to Liam until probably 9pm that night. That hospital stay lasted two weeks. Liam and I alone in a tiny portion of the room we had to share with another patient and had no privacy what so ever being right by the door. I litteraly had 2 feet of room from the sink to liams crib and the chair (pull out bed was there). Liam and I stayed cozied up cuddling all day long. It was a horrible stay. Liam had started desatting during shift change and his numbers kept getting lower and lower. He laid in my arms crying and miserable and in pain. I couldn't soothe him. I called for help 4 times then the mom of the patient next to me went to the nurses station and yelled at them to get their butts in there to help him. I will love that woman forever for that! A few minutes later a PCT (nurses assistant) came in and looked at Liam and ran outta the room. She came back with a nasal canula and hooked him up. Then she called the RT and doctors. I sat there crying because I was mad and devistated and nothing I did helped him. It took a few minutes but Liam's sats came up. They never did figure out why he needed oxygen but everytime they tried to wein they couldn't go below 1/4 litter. After two weeks of testing and unable to wein they decided it wasn't time to do his right diaphragm repair and that he just needed to stay on oxygen. Liam stayed on oxygen 24-7 from April 2012 to August 2012. It took a move back into the city to get him off daytime oxygen. Since then Liam still randomly needs oxygen. His Pulmonologist wants him on oxygen the minute his numbers hit 95 %. (Which is alot). His Puml, GI and Pedi all say its finnaly time to repair. His surgeon has the veto. Sorry about the tangent but thought I'd share more of Liam's past journey.

Baby You're Sick

I should have known better than to think that Liam would escape Cold/Flu/RSV

season unscathed. It started about a week and a half ago with his allergies. At that time I increased his benedryl from just at night to every 6 hours to help combat the symptoms. I also tried keeping him inside. Problem was every time I turned around big sister or daddy had let him outside. Still he seemed fine.

But of course he had to go to a doctors office where I am sure he must have

caught something on top of his allergies. That or he caught it when we had to run out to the store. We've tried not to take him out of the house for this very reason. I know some of you probably are thinking that you can't keep a kid sheltered and secluded inside the house for that many months. Which we usually do from late September to at least April. We've tried very hard and you're right. It is pretty darn impossible to NEVER take him out somewhere along the way but we try. And we do this for his own health.

It seems to never fail. A soon as Liam gains some weight back, he gets sick, stops

tollerating full feeds and looses all the weight it took 6 months to gain. We are very blessed that he hasn't ended up in the hospital over this yet. This time last year, a cold landed him admitted in the hospital for at least 5 days minimum. Thanks to the synagis shot protecting him from RSV, when he caught RSV in January 2013 he was able to fight it off at home. Too bad they don't have something that works that great against colds.

I'm assuming he caught a cold but with Liam when his allergies get severe enough he has the same symptoms so it's very hard to tell. I know the last two night, last night more than the night before, was pretty bad on him. Last night he was up every hour on the hour. He ran a low grade fever and coughed the whole night. He was miserable. I gave him Motrin at bedtime, then again at 3 am and that kept the low grade fever away. Milk of Magnesia helped his upset tummy but not his diaper. I had to continue to change his diaper every few hours last night because it gave him the runs. Good news is it helped him tolerate 45 mls an hour of feeds. His normal rate is 80 mls per hour so you can be sure he's loosing weight as each hour passes. If I can just get that cough to subside he would be able to tolerate more.

Unfortunately he's not the only one in the house not feeling 100%. Big sister Lanie Bug is having allergy issues of her own. She has been very hard to keep inside. It's been a fight. She hates being inside, especially when someone is outside. Daddy has been outside all weekend working on the car and she wanted to be right there playing the entire weekend. Even though she felt worse that night from it. I told her this morning there was no way she could go outside today because she had school tomarow. That if she did she would get worse and not be able to go to school. Her eyes got huge and she agreed to stay inside. She hates missing school. If only it was that easy to keep Liam wrangled lol.

On top of no going outside, all doors are staying shut today so allergens don't come inside.
Have I ever mentioned how much I hate allergies. I too have been suffering. I finally figured out why my face kept breaking out. I am allergic to the concealer I was using. It's been a few days since I've worn any and my face it clearing up now. My nose and throat are suffering from the pollen and dust in the air. It's winter yet the last few days have felt like late spring/early summer. We had some rain last week but it wasn't enough to clean out the nasty air. I swear socal is the worst place for any with allergies or asthma to live. It's time again for the air purifiers to come out.
 
Of course with two "sick" kiddos, I've been on germ patrol. Lysol
everything. And in doing the sanitizing and cleaning everyday for the last week I've realized how very small our house is. With the kids getting bigger the place seems to be getting smaller. I thought as they got older it would be easier to keep the place clean and everything in its place but I was so very wrong. Instead the kids make more messes and getting them to clean up is a headache. Every little mess seems huge because this place is so small. This weekend I felt like the walls were closing in on me. I thought maybe we had too much stuff and started trying to figure out what we could get rid of. Then I realized that it's because we have no storage in this house. What I need is a professional organizer to come in and revamp everything or lots of money to do it myself lol. Our house didn't feel this small when we moved in.

Oh well, like in all things, I'll find a way to make it work.

In other news:
Liam is ready for a big  boy bed!!
Yep, you read that right.
Liam is ready for a big boy bed!!
hehehe
I love saying that.
My task today is to tackle Liam's room and organize it.We need to get it ready for a toddler bed,
and toys need to be picked up and put up.
Justin and I have to decide now if we're going to go buy him a character toddler bed from say Walmart or Target or if we just want to build a short base to put his mattress on so it's low to the ground for him and to just make it last until he is ready to be moved to a twin bed. To put a twin bed in his room would be difficult with all his medical supplies. I would have to store them somewhere else and we've already tackled the fact that this house is really small so there really is no where else to put them.

Anyhow,
I'm exhausted from lack of sleep.
Waiting for my coffee to kick in.

<3 aubin="" p="">

Joyful and Triumphant

2013 has been a

Joyful & Triumphant

year for Liam...

And the entire family.

Liam has made so much progress

and has grown so much.

God has been VERY busy

healing our Little Lamb.

We started out the year

with Liam struggling to walk.

He couldn't walk on his own,

let alone stand without assistance.

Still he was happy,

and playful.

The year started out rough.

Liam wanted to crawl everywhere,

but he was hooked to the feeding pump

20 hours per day.

Liam was approved for Physical Therapy.

His PT realized he has low muscle tone in his ankles.

She figured that was the reason he couldn't walk at age 1 1/2.

IFO's were recommended.

And thanks to a generous donation

from a prayer warrior,

Liam was able to get his IFO's.

Still is was a struggle.

We did leg strengthening exersizes daily.

He soon was able to walk holding onto things.

He climbed before he could walk.

Even learned to climb out of the walker

making is unsafe to use.

Which in turn made it very hard

to keep him from pulling out his feeding tube.

Liam wanted to walk so bad

and was so determined

that he even started spider walking. 

He'd stand on all fours,

and his head,

and "walk" across the room.

Then one day out of the blue

we were at the doctors office for a routine visit

when Liam stands up

using the wall to do so,

then starts walking down the hallway.

I sat there shocked.

Then I remembered to grab the camera.

I videoed Liam walking all the way to the back.

It was amazing!

This video was taken the day he decided

he wanted to walk.

May 28th 2013

http://www.youtube.com/watch?v=FKGn2iRiUmQ&feature=youtu.be

It's so hard to believe

that its only been 6 months.

I remember swooping him up into a big hug

right after I videoed him,

then I cried.

I cried again on the way home.

And as I sat here now watching the video,

I am teary eyed.

Its AMAZING!

The same day he had Bright Start and PT.

They were shocked as I was.

Click to review the blog post:

http://mommyconfessionalinmyshoes.blogspot.com/2013/05/unexpected-surprise.html

Liam had several hospital stays

and setbacks throughout the year.

When he finally started eating we were thrilled.

Unfortunately every time he got sick

he would stop eating

and it would take months to get him to start again.

This past year we ditched the GJ tube,

and replaced it with an AMT mini ballonless button.

Hes gone from 20 hour continuos feeds,

to 12 cont night feeds,

and 3 bolus feeds during the day.

We also added Blended diet feeds during the day.

When we started that,

he started eating more,

drinking,

and gaining weight.

He's still super tiny for his age

but growing great.

He's taller and weighs more

than I did at his age.

So this momma isnt worried

about his tiny size as long as he continues to grow.

Liquids were really hard.

For awhile he would only drink

out of a honey bear.

Then it was a baby bottle.

He finally settled on a specific sippy cup.

He's been drinking out of the same kind for about 6 months now.

He's eating now,

but small amount at a time.

He loved dorritos,

french fries,

chicken nuggets,

almost all meats,

pizza,

spagetti,

beef jerky and so on.

We're still dealing with texture issues.

Oral and environmental.

He will let you brush his teeth now,

but not with tooth paste.

He gags and vomits if you do.

We're still having issues with his feet

and he's been reffered to a specialist,

who has yet to call.

Probably because were still waiting on isurance approval.

He can walk without his IFO's now,

but his ankles are so bad they practically touch the ground.

(Theyve gotten worse since this pic)

Verbally,

Liam is improving daily as of this last month.

We were getting worried about him.

His words still arent very clear

 but we understand them.

He speaks some sentences

and copies everyone.

And we made progress in spreading CDH Awareness!!

I sent in a letter to our Mayor.

After reading she declared CDH awareness week in March every year!

Unfortunately I couldn't be present to accept the reward.

But Liam's Grandma was.

Its been an amazing year for our amazing little boy.

Hes come so far!

As you can see

it's been a triumphant and joyous year for us.

What will next year bring?