Wordless{ish} Wednesday

Caught in the act...

Rockstar status

As I prepare to take care of a newborn again, I'm too excited to miss sleep. No I'm not knocked up, Liam is just waking to eat at night again.

Last night he woke up at 3am, I fed him a bottle and put him back down, at 330 he was awake crying again. Super dad attempted to work his magic and soothe Liam back to sleep but nothing was working. Brian asked me to get him a bottle, I argued Liam had already taken a bottle( don't mess with me while I'm sleeping!), but since nothing else was working we decided to try again. During that hour my little rockstar finished 6oz, he has never had more than 4oz at a time! He followed that up with finishing 22oz of milk today. WINNER!

Be a rockstart yourself and click "follow"!

Pray for this family

As parents we often wish we could trade places with our children when they are going through something. Everyday I have wished I could take on this fight for Liam. Reading this article I see the grass is not greener on the other side. This article will make you cry, but please read it and pray for this family who needs a miracle.

Brooklyn Parents

"you're like his pacifier"

We have been home for 6 terrific days now. They have all had their ups and downs. Ups- Liam is so happy, enjoying his own toys, and food. Down- attachment issues. Way down-work.

Liam is attached... to me... all the time. He is getting better little by little, but after this last hospital visit Liam has developed an anxiety toward people. All people, not just strangers.

Yesterday dad was busy working on the house all day so he wanted to put Liam to bed (BONUS) but Liam wanted nothing to do with him, screamed and reached for mommy. But dad persevered. My grandma is here visiting now, but Liam doesn't even want her talking to him. We just have to take a breath and reassure Liam no one is going to hurt him, easier said than done with a 12 month old,

Why was dad so busy all day long? Because when it rains it pours! In January our outside doors broke, broke off the hing and fell into the house. This along with an unusable bathroom, hole in the ceiling and squirrels in the attic. When we bought his house we knew we wanted a house it fix up. We had done well with 1 job a year, but never planned on so much going wrong at once, and while I am out of work on top of everything else. The sky is falling.

Tomorrow Liam begins his 5th cycle of chemo. We pray this is the beginning to the end of this story.

Home

We came home today after 16 days in the hospital. Liam is doing very well. As we readjust to life at home I leave you with this video. If you don't laugh there is something wrong with you (just kidding, but I find it hilarious).

Precious Moments

While nothing can top the feeling of holding your baby for the first time, there are other times when holding your child is just as precious.

After Liam's surgery it was 3 days until the doctors let me hold him. Holding him that day meant the world to me but it was extremely uncomfortable for him.

It has been 10 days since Liam's surgery and I have only held Liam a handful of times. While we're at the hospital Liam sleeps in the bed with me, I hold his hand and that has been enough for him. Tonight Liam was holding his arms out for me so I tried to lay closer and hug him. This only made him mad, pushing me away. I went back to my "side" of the bed and tried to pat him. Liam rolled over, crawled to me, climbed up and fell asleep.

It's going to be a long night, impossible for me to sleep like this, but I have my baby back!

Adjusting steps

When it is obvious goals cannot be reached, do not adjust the goals, adjust the action steps
~Confucius

I'm taking a step back from writing about Liam today. Tune in tomorrow, we've got stories to tell...

Today is like my new years, I'm going at it with goals. My goal for a while has been to get in shape and get back to running. Whenever I start, I get derailed. I am writing about this today because sharing it with you equal accountability. Don't let me slack on this!

Why has running been so hard for me? I don't want to leave Liam. Yes, Brian is a very capable father. I just don't want to leave him. Also I am on a medical leave from work to take care of my son. I feel guilty if my time is not all about taking care of Liam, like I am cheating my medical leave, even if it's 7pm and I wouldn't be working anyway.

Brian and my mom, among others all tell me I need to get out. In order to take care of Liam, I have to be healthy; physically, mentally, emotionally. Running does that for me.

So today when Brian got back from work I went out to run. I went 2.5 miles. Now I won't share with you how embarrassingly slow those 2 miles were, but I plan to go again tomorrow. Small goal: run 3 times/ week. I hope my exercising improves as Liam's health improves.

Liam you are my inspiration.

Happy St. Patrick's Day

Liam's not feeling well today. Has had fevers on and off. We were hoping to go home tomorrow, but it looks like we won't get out before Monday. The doctors want us to stay and give the ng tube a chance to stimulate the appetite, hopefully he won't have to go home with it. We already had an audiology appointment at the hospital on Monday he needs to be sedated for, so I guess it all works that we stay until then.

More Bang ups and Hang ups

You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.
~Maya Angelou

I made it through the past week without a breakdown. I earned it. Today I felt defeated. I have held it together, put on my big girl panties and helped Liam fight his battle. I knew after surgery the battle wouldn't be over, but I felt he was getting better.

Today I cried. I cried all afternoon while Liam slept. We all know how Liam has been stuggling with food for the past 6 months. Yesterday the oncologist recommended a feeding tube to get Liam nutrients and hopefully stimulate his appetite. This morning the surgeon came in recommending the same thing. I told him I didn't want that for Liam, but all the doctors agreed it was what was best for him. I had to do what was best for him so I allowed the feeding tube.

It was very traumatic. It was traumatic for Liam, who had to be held down while a tube was put in his nose. Who needed the tube readjusted twice. It was traumatic for Mom, who had to leave the room while Liam wafs x-rayed 3 different times to check the position of the tube. Who had to listen to her baby scream and cry. So as Liam slept away the afternoon, I cried.

I cannot bring myself to take a picture of him yet, so no pictures today.

A day of success

Today is your day! Your mountain is waiting. So... get on your way

~Dr. Seuss

Today was a great day. Liam was transitioned to oral pain medication. This is one step closer to him going him. I definately prefer him on this medication. When he would get the IV morphine he would just space out and stare. With the oral medication it takes away his pain without effecting his mood. We played a little today. And he ATE!

I call his eating a huge success. Liam going home is dependent on 2 things; pain control and eating. And we all know the food roller coaster we have been on the past few months. Yesterday was the first day we could give him food; he had 1 cheerio and 1 cracker. Today he had 15 cheerios, 12 wheat crackers and 10 goldfish crackers. The surgeon and nutrionist didn't think that was a lot, but I call it a HUGE success!

Also today the physical therapist came to evaluate Liam. Before I get bombarded with phone calls and messages, there is no concerns. I requested Liam begin receiving early intervention services. He has met all his developmental milestones, but with his fequent hospitalizations I want to make sure he stays on track. That is what this Mama calls knowing the system, bring proactive and advocating for your child's needs (which I guest blogged about here)

Oh how I have missed your smile

Parenting 101

I had a strong opinion on many things about parenting. And although I still have strong opinions, they have adapted.

For me one of those strong opinions involved television. I do not want my child watching television. I do not pass judgement on parents who let their children watch television, as long as it's not their babysitter, I just never wanted it for mine.

This is one opinion I had to adapt. Liam has not interest in the television when it is on at home, lucky for me.

Right now Liam can just lay there, no toys, no stimulation. So Yes, I gave Liam some cartoons to watch.

What is a parenting opinion you have had to change?

PICU day 4

Day 1: all the machines Liam was hooked up to following surgery. Fentanyl for pain, Versed for sedation, antibiotics to prevent post- surgical infection, plasma and platlets to replace what he lost in surgery.
Day 1: Has a breathing tube, NG tube, cental line, artital line, IV, accessed port, jp drains. (lines and tubes all over)Day 4: All that is left is an accessed port, jp drains and nasal canula for oxygen

Liam is doing well. In pain, obviously. The top bandage on his chest is just covering the needle in his port. The bottom bandage is over his incision, this was a major surgery, it could not be done laparoscopically. When he sees us he wants to be held, which is how he got twisted in his crib. He was reaching and rolling trying to get to mama. We haven't been able to hold him yet, surgeons want him to lay flat still.

If he continues to do well we will be moved to a room later today or tomorrow. Surgeon has not rounded yet today, but I am hoping to hold him later, but thats me being selfish, we will do what is best for Liam.

PICU day 2

Liam is doing well. He will remain sedated for pain management for a few days. The doctor is planning to remove the breathing tube this afternoon.

It will take a few weeks to get the pathology results back, but from initial results it looks like the surgeon got a clear margin. This means a "rim" of healthy tissue was removed with the tumor. In the places where this "rim" was smaller was near dead tumor from the chemo, all live tumor cells appeared to be a good distance from the healthy tissue.

Liam lost about 60% of his liver. He also lost a lot of blood, during the surgery he was transfused his entire volume of blood. This was expected, the liver is a very vascular organ. He has been getting a steady stream of plasma because when he lost his blood he lost his clotting factors, those were not replenished with the transfusions.

He is resting comfortably right now. Sorry I do not know how to upload pics from the iPad. I'll add some from home later.

Show your support for Liam and click "follow". WINNER!

One Year

Dear Liam

Today you are one year. As we were preparing for your birth last year there was no way to tell the joy and love you would bring into our lives.

You have grown from a helpless infant into a fearless toddler. One year ago your favorite place was in mama's arms; it still is. Between our cuddles we often find you digging through drawers or pulling things off shelves. You also love to play with your cars.

With all the road bumps you have had in your short life, this past month has been full of wonder and adventure. You have began to crawl and continuously chasing the dog and cat around the house. You climb the stairs and love to practice walking. Such a sweet baby boy you are always willing to offer up hugs and kisses, and no one can resist your smile as you wave hello.

You haven't had the first year we wished for you and surgery was not the way I wanted you to celebrate your first birthday but to be cancer free is the best gift we could give you. You are a special boy in so many people's thoughts and prayers I know year 2 will be all we could wish for you.

I love you
Love,
Mommy

Strength

To hold it together when most people would understand if you fell apart, that is true strength

This is the quote I am trying to live by for the next few days, not because I have to, I know it's okay to cry, but because I have no idea how I am holding myself together right now.

We are checked into our luxury suite for the night, they just took Liam for blood work. He will be getting a blood transfusion and antibiotics tonight so he is as strong as possible for surgery tomorrow.

Doctors will come get him around 7am. The surgery will last 4-6 hours. I will try to keep everyone updated via facebook (if we're not friends click the facebook LCF Threadz button at the side, like and keep your eyes peeled for updates). We will post updates here, they just won't be as frequent. Thank you everyone for your thoughts and prayers.

Balloons for Liam

Yesterday Liam's playgroup had a celebration for his birthday. We released 365 balloons. Tied to each balloon was an info card about Liam. We have already received one email from someone who found a balloon. Thank you Karen for organizing this event.

U-haul donated a voucher for the truck to get the balloons to the park.

Emmett trying to escape

Without mystery life would be very dull

Preparing for Liam's birthday celebration tonight. Thank you for the donations from Helium and Balloons Across America, Bitsy Creations and U-Haul that made this possible. Stay tuned for pictures.

Anxiety is mounting

Liam's surgery is in less than a week now. And although the resection is an answer to our prayers, this mama is definately feeling the anxiety now.

Before Liam's first surgery there was no time to stress, the first surgery was during the hospital stay right after his diagnosis. Liam struggled coming out of the anesthesia, he was on oxygen and slept for the next 24 hours. The doctors think this time will be easier, his tumor is much smaller, his liver will process the anesthetic better. Doesn't make this any easier. We will be in the hospital anywhere between 5 days and 3 weeks. Liam will recover in the PICU for a few days after his surgery.

Please keep Liam in your prayers next week.

Liam waking up after his first surgery