The Picture That Changed Everything

I look at this picture and am flooded with emotions and reactions. This picture was taken 3 years ago today. It was Justin's first time holding Liam and our first family photo. Justin and Lanie had just arrived. They traveled 4 hours from home to come visit Liam and I. I was so happy happy they were there. I was so happy we got to take this picture, a pic I'll always cherish.

But when I look at it I realize how much is reay going on. Yes Justin is thrilled and looks it. However I fought hard for that smile you see. 

I couldn't muster a bigger smile. I didn't have the energy. Truth be told I was beyond tired. I was beyond exhausted. The only bed I had was in a room with 8 other mothers and not all of them respected the rules of being quiet. I hardly slept any. I wouldn't retire to bed until midnight or later and I would be up at 5am to be back at Liam's side. Most nights I would go back to NICU just to watch his peacefulness and forego sleep altogether. 

I was lucky to get 2 or 3 hours a night. Usually only 1 hour. I only ate because I had too and I ate very little. I ate alone. Talking to no one, looking at no one, just starring into space trying to see a future but couldn't get past today. 

I clinged to the weekend visits from Justin and Lanie. Took what happiness and energy I could grasp and used that to get me through the lonely weeks. I slept like a rock cuddles up to justin and Lanie those nights. They were the only time I truely slept. The only time I could take a midday nap because they had a hotel room. I had my reprieve from the loneliness those weekends. 

I had never felt so alone surrounded by so many people. It was all taking a toll on me and I was sure how much longer I would last without breaking down. Just a few days after this pic was taken I received a note from the social worker saying CCS had finally picked us up and I no longer had to stay at the hospital. I cried in joy because this meant Justin and Lanie could come stay until this journey ended. Not two days later I get a call from the Ronald McDonald house that they had an open room for us. Even better. 

This picture was the start of a new beginning. And as exhausted I was I grasped onto that and rode the wave in hopes that we would be together finally and I no longer had to deal with everything without a shoulder to lean on. 

Liam was my strength to carry on. 

Lanie was my rock because I had to stay strong for her. 

Justin was my shoulder to cry on when I needed to let it all out. 

First Cuddles 7/28/11

3 years ago today was the first time I ever held Liam in my arms. I had waited so long and felt it would never be possible. But it was possible and exactly what I needed that night more than anything in the entire world. And once I held him I didn't want to put him back. But as exciting as it was to hold my dear sweet little 5 lb 18 day old baby the memory will forever be marred and tattooed on my brain forever. If you look at the top view of him you can see why but for those you don't see I'll elaborate. Liam wasn't ready to fly. They had just taken the feeding tube out and put him on cpap. He wasn't ready. And even though after a mere 5 min cuddling my son we had no choice put to put him back in his beg and call for respiratory. Liam wasn't getting adequate oxygen and was turning blue, slowly suffocating. A nightmare I still get to this day. They tried a different setting but before 24 hours on cpap he had to go back to the breathing tube. He just wasn't ready. A few shaky breathes later and I resigned myself to be ok with that. To accept it because there was not else I could do and I'd rather have him here with me than not. I realized then that fear can be just as strong as love. And just like love it can over take you completely even over ride love if your not careful. My love meant more than my fear. I let my love for him shine through every minute of everyday hoping that he would feel it and fight harder. I thank God everyday. 3 Yeats ago today and I still cherish every hug, kiss and cuddle as if it was the first. #cdh #cdhsucks #ihatecdh #survivor #love 

7/27/14 Selfie OP and a new Loose tooth

I was just laying here minding my own business with a pillow on my lap when Liam decided to climb up on the bed and settle himself between. My legs with his head on said pillow I say that's a selfie opportunity. 

Liam is doing very well after his mediport removal surgery. Today we've just been hanging around the house. Liam's playing with his cars, trains, books and playing his games. 

On an exciting note Lanie has her first loose tooth! Last night she was thrilled she had her first loose tooth. Today however she's singing in a whole new tone. 

Today she says her tooth is really sore and that it hurts. She's sticking to soft foods and chewing on the side of her mouth. She can't wait until it comes out so she won't hurt anymore. 

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. 

1 day post op: medi port removal

To catch up: yesterday Liam had his mediport taken out!! He did amazing and the surgery went beautifully. No complications what so ever. He came out of anesthesia a acting normal. The nurses commented on how he behaved like he never had surgery and that it was amazing as well as a breath of fresh air for then to witness. My son is a fighter and a miracle and he always amazes me as well.  The best surprise of all was that they did NOT have to use a breathing tube for him while under!!! That's a first ever for our miracle!! 

Today:

Liam had a great night last night. Slept all night long and slept in until 9am. That's unusually for him but he needed the sleep. He's playing and laughing and acting normal this morning. Again as if he never had surgery. I admire his resilience and his strength tremendously. I am basking in my sons laughter and happiness today knowing that this is what I waited so long to hear after he was born, knowing that this is how it's supposed to be. To the eye he is just a normal little boy who loves to play and laugh and have fun. His Gtube and scars are the only reminders he isn't a normal boy. But who needs normal and what is normal anyway? Normal is just over-rated. Why be like everyone else when you can be you? I love the little boy he's turned out to be. I live that I can breathe easier knowing they mediport is gone and that I no longer and to retrain him, pole a needle into him and flush it every month. I love that a fever is just a fever now. That his ailments are just simple ailments. So what if he has some GI and lung issues. He's overcoming them everyday. So what if he's small. He will get there when he's ready. That's the one thing about Liam, he does things on his own timeline. So to my little boy, you've grown, you've overcame. Don't ever be afraid to be who you are. Don't ever feel embarrassed or ashamed of your scars for they tell a story of your strength and your will to fight and survive. Your earned this life so make the best of it and enjoy every minute!! 

Pics from yesterday:

Liam's monkey toes picking up my necklace yesterday before surgery just laughing away. 

Seriously my favorite pre-op pic!! He's just simply sitting there, happily playing a Thomas the train learning game on his Mickey Mouse innotab. 

Another lovely pre-op pic. Liam decided he wanted to walk into OR and he would do so holding the hands of not one but two beautiful nurses and flirt with everyone he saw along the way. These two nurses where amazed and flattered. Aparently they don't see too many willing and happily walking themselves to the OR. Everyone stopped to get a look and commented on how adorable and sweet he is. Yes ladies I know you love him but he's my baby forever and always. I know he was in great hands. 

Post OP cuddles. Liam tried to hide his beautiful smile from the camera. He was still tired here as this was very soon after waking up. 

At home just 2 hours later he's munching on French fries and playing a game. Liam was extremely active yesterday and wanted to eat the whole house up. He was treated with French fries because well because because. He simply just had to ask and I would jump yesterday. No naps for this little guy at all yesterday. He powered through it and enjoyed the day for everything it offered. 

He did however go to bed at 8pm, fell asleep around 9pm and slept until 9am this morning. And again he's having a great day acting as if yesterday never happened. 

Two peas in a pod

It's a phenomenon that won't happen often. In fact this is the first and only time it will ever happen. When Liam is exactly half the age of Lanie.

Lanie is 6 years old. 

Liam is 3 years old. 

I was sitting here watching the two of them play together, watch cartoons together and sing together. It amazes how well they get along. Of course they fight and bug each other but no matter what they always love each other. 

Lanie being the big sister always wants to keep him safe, bug him, irritate him, and boss him. The normal big sister stuff. But if anyone else is mean to him she's the first to stick up for him. 

Liam being the little brother wants to follow his sister everywhere. He wants do to what she does. Okay what she plays. He wants to take her stuff and run away laughing when she chases him. Liam stands up for himself telling her no but he also gives her almost anything she wants. He loves and admires his sister. Looks up to her. 

These two can be mean to each other one minute and sweet and living the next. Lanie being the big sister feels it's her job to teach Liam new things. She tries to teach him new words or how to play games and how to count. He's learned a lot from here. 

When it comes down to it these two would be lost without each other. 

God blessed me with two beautiful babies. 

3 Days Till 3

In just 3 days my little lamb will be 3 years old!

For almost 3 years he has defied the odds.

Survived and overcame all that was thrown his way.

He is our miracle.

Today we took Liam's 3 year old pictures.

His outfit was carefully chosen.

The backdrop was perfect.

But since life isn't perfect and neither are we,

Liam choose not to smile for his 3 year old pictures.

He seemed confused over the ordeal.

The pictures came out cute none the less.

We also decided that since we were taking pictures,

we should take really good family photos.

Review: Broadway Nails Real Life Brush-On Gel

I was out looking for nail polish to do Fourth of July nails when I came across the Broadway Nails Real Life Brush-On Gel nail kit at CVS. I decided for $9.99 it was worth trying. 

This kit is fairly simple to apply and turned out looking beautiful. I was happy with how easy everything applied and how understandable the instruction were.  

There were a few things the box advertised that weren't true though and that was disappointing. 

1. The box says that the formula dries in under 5 minutes. I've been sitting here for 20 minutes and they're still tacky. Like when you use UV gel polish and have to clean them with alcohol after. 

2. The box also says that there is no odor. That is far from the truth. Each of the three chemicals had a harsh odor to them do much so that my eyes felt like they were burning. 

The nails turned out very thin but seem very durable. Time will tell if they last like the box advertises. 

*my review is based on personal experience with the product and was not solicitated by the companies or stores mentioned. 

13 Days Till 3

       

With just 13 days until Liam's 3rd birthday I find myself reflecting on the past 4 years. When I found myself pregnant with Liam I was shocked. It was unexpected. We didn't want to even try for a second child until the following year. After the shock wore off I was excited of course. Even more over joyed to find out that our little bundle of joy was a boy. The entire pregnancy we were expecting a healthy little boy. His birth date would have fallen perfectly with my time off between tax seasons (at the time I was a tax professional). I would have have enough time off for him to be a few months old before going back for training followed by tax season. This was going to be a career for me. Plans changed when Liam was born with Congenital Diaphragmatic Hernia and our lives were turned upside down.
          Born with CDH".

I had started this blog at the end of my pregnancy with Liam. I figured things would get crazy with two kids, one newborn and one 3 year old. Little did I know how crazy things would truly get. The first time I blogged about Liam's birth he was 13 days old (July 28th 2011), already off ECMO, already gone through repair surgery. I recapped his first 13 days in a rush. I didn't exactly know what to say. I was excited because I was able to change his diaper for the first time. I had a lot of fears and questions. You can read the very first blog post "

         A Step Back".

The first time I got to hold Liam (July 28th 2011) was a tornado of mixed emotions. I was excited, elated, scared and more. It was also a freighting moment because Liam had just been excubated and had turned blue on me because he wasn't getting enough oxygen. Our first cuddle lasted about two minutes, five max. Read all about this experience in blog post "

          Then there was the time we started seeing his true personality. He would try to pull out his breathing and feeding tube when his favorite nurse wasn't looking. He would also open his eyes and look around when he was supposed to be sedated. For a few days she didn't believe me because every time she's watch him he would close his eyes and play nice, but as soon as she turned away those sweet eyes would open up again. Read all about Liam's NICU mischief in blog post "Good News".

         Critical Mistake".

The nurses and doctors worked smoothly in Liam's care. He was very well taken care of by them. There was one mistake made the entire time which almost set Liam back drastically. His left lung ended up colapsed because of this mistake (at the time I had wrote that his left lung was his good lung. I had been wrong. The left lung is his bad lung). Such a simple thing that was overlooked. One of the nurses (a male nurse) had pinched off his oxygen tubing with the side of the NICU bed. Liam oxygen saturation was extremely low. You can read about it in blog post "

          I can't talk about Liam without talking about the CDHer we shared a NICU room with. On Sunday August 7th 2011 Maddie lost her battle against CDH. Every family in NICU including us were devastated. We had grown close to the Spence family. They had prayed for our little one and looked after him when he arrived in NICU without us. The minute they did that, they became family. Maddie's loss was tragic and still hurts to this day. I cannot begin to imagine what it felt like for her parents, her brother and their loved ones to have to say goodbye to such a precious baby girl. They will forever be in our hearts and our prayers. Maddie's birthday is approaching and we will be praying for her family. "Tragic Loss"

        Eventful Day".

  August 12 2011 was an eventful day. One of the best joys of that day was the fact that we were finally able to dress Liam in full outfits. We had gotten the green light to bring in outfits for him. He was also moved into a crib and Nurse Sue suggested we get him some things to stimulate his brain. She suggested a mobile. That weekend we ended up buying him a mobile, crib mirror and a bunch of little toys that clipped onto the crib. He LOVED looking at himself in the mirror. This was the begining of "normal". Read all about it in post "

          When Liam turned one month old I cried. My miracle baby had survived so many odds already. I was so excited and proud of him. Read all about it "One Month".

          In blog post "Blessings" I talked about how overwhelmed I was being in NICU for 6 weeks and having a son so critical. We were on the verge of going home. It was the night before we were to be discharged and I was doing the overnight sleep in with Liam. One of the doctors came in to discuss his MRI results. That's when things hit me how important everything I did for him was.

      Read all about bringing our NICU graduate home in post "Bringing Baby Home A Year Ago Today" and see the wonderful pictures from that day.

          There was a moment we got a card in the mail from CHERUBS, when we supported them. It was a christmas card and Lanie had asked what it was. I told her it was a Christmas card for CDH kids. She replied "I don't want Liam to be a CDH Cherub. I just want him to be Liam Michael". It was a heartbreaking moment. I too just wanted him to be Liam Michael. Read all about it in post "I Wish I Was More Like Her".

          Liam's first Christmas was the best we could have asked for. We couldn't take him to see Santa so Santa came to see him. Read all about it and see the pics in blog post "Bryant's Special Christmas Eve".
          Christmas day was great too. "A blessed Christmas"
More Links from Liam's first Year:
We said Goodbye to 2011 with more hope for the future. "Saying Goodbye to Old"

We survived the "CDH Tornado"

 Liam's 9th hospital stay through pictures

When all else fails try new  things
         
Jump for joy at good news

Liam's One year old pictures

 Rewind on Liam's First Year

 We Made It: All about Liams first birthday

Pictures from August 15th 2011 and 2012

          Liam had a favorite stuffed puppy that he named. It was the first thing he named all by himself. The first toy he became attached too. He was devastated when it went missing. I looked everywhere but couldn't find one. I gave up and ordered one online. Liam was so happy to have his Baba back. Read all about Baba's home comming in post "A Sweet Home Coming"

The first time Liam was ever in a Pool: Pool Time

Liam first Tubie Friend

During one of Liam's many hospital stays I wrote this blog post "I wish I may, I wish I might..." where I wrote:

Star light

Star bright

I wish I may

I wish I might

Have the wish I wish tonight......

The strength to keep fighting when I feel weak and broken

The will to carry on when things look bleak and weary

The patients to endue the long lasting battle

The faith to believe that there is a light at the end of the tunnel

The ability to mend my broken heart

Liam's First Trip to the Pumpkin Patch

Post from OCT 2012 Video Overload of Mr. Liam

          After Liam learned to crawl, he quickly learned to pull himself up on things. He spent alot of time doing so. "Adventures On The Go" shows just what that monkey got into through pictures.

Liam's 2nd Christmas "Christmas Day Special Gift" and "Christmas Eve with the Bryants"

2013 brought a "New Year, New Discoveries". Liam learned he loved trains and worked on walking. He still couldn't do it alone.

When I had to flush Liam's mediport and couldn't get it I felt like such a failure

See Liam's 2nd Birthday pics in Take 1 and Liam's 2nd birthday party

When Liam started running and talking in "Say What?!"

Recap of 2013 in 2013 in review

Liam's feeding issues has put us through all kinds of ups and downs. View Liam's Tubie Journey from birth on in "Liams Tubie Journey"

          As you can see with just these post that Liam has been  through a lot. We are so proud of him. In just 13 days Liam will be 3 years old. There was so much I hoped for. I could sit here and cry about how we can't throw him a birthday party this year because he needs to be healthy for mediport removal surgery and we can't risk exposure to anything. I could complain that he has to spend his actual birthday going to pulmonology clinic and surgery clinic.
          Nope! Instead I want to rejoice on how far he's come.
                *He's walking
                *He's stepping down low steps without sitting down!!!
                *He's meeting goals we set for 6 months out in mere days and weeks.
                *He's relatively healthy and very happy.
          Why shouldn't we rejoice in the miracle that he is? Our little Liam, our little lamb will be a blessed 3 years old!!!!! 3 YEARS OLD!!!!!
            We did it little lamb! We made it! You did it!!!! You are amazing!! I hope that when you get older you can be as proud of yourself as I am in you.