Wednesday, July 25, 2012

MISSING

MISSING:

Blue Patchwork puppy named "Baba"

 

 

Baba has been with Liam for 6 months of hospital stays, surgeries and was even life flighted with Liam to UCSF.

Baba the patchwork puppy went OFFICIALLY missing today.

Last time we saw him, he was put into the laundry basket for washing.

Baba was the first and only toy Liam has named.

We've tried to substitude other toys in hopes that they will take but...

 


There's no substitution for a boy and his puppy.

If anyone has seen Baba, or knows where I can buy another one here in town or online, please let me know.

There is a reward for the return of Baba, or info on purchasing a new one..

One small boy's happiness and smiles.

Oh and it'll help make mommies life a little easier.

If you have any info on the missing puppy please contact Liam's mommy  :)

 



Sunday, July 22, 2012

Looking Back 7/22/11

A year ago today my little lamb was 1 day post-op from repair surgery. He survived the repair and began healing.


Liam was slowly being weined from the paralytic and finnaly was allowed to wake up and open his eyes for us. I remember sitting there stairing at him when the nurse said he was being allowed to wake up. Admittedly, I cried when I saw his beautiful eyes.



Liam threw his first fit.

So Lanie sang to him "Go to sleep little liam"

And he calmed right down.





Fast forward: 7/22/12











Saturday, July 21, 2012

Miracles

A year ago today I was sitting in NICU when our primary Sue got the call that that the surgical staff was on their way up. It was time, liam was getting repair surgery that would safe his life and put him on the road to recouvery. I was all alone, Justin was on the road on his way to us. We had all hoped hed make it before surgery. Unfortunately he didnt so I spent a very long 45min in the parents kitchen waiting before the surgeon came in. Justin didnt make it untill 3 hours later. Liams repair surgery being done on my birthday was the best gift I have ever or wilk ever recieve.
Now a year later I am reliving the anxiety, the pain and the elation.
A year ago today we were blessed to meet little Lulani and her parents. Happy Birthday miss Lulu. We pray you have a special day.

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Friday, July 20, 2012

Life with A 1 & 4 year old

Raising a 4 year old and a 1 year old isnt easy. Especially when the 1 year old has so many special needs that take up most of my time and the 4 year old begs for attention by constantly doing things that require me to stop what Im doing to "pay attention". And moving in the midst of Liam turning into a 1 year old and trying to squeeze in time for tea parties and lalloopsy hasn't been easy by far. Tempers have flaired, full fledged 4 year old fits have been thrown, and plenty of crying has occured. Ive had my 4 year old yell at me, stomp her feet, break down crying over being told "no" and tell me I was mean. She's lost her TV many occasions, had too many time outs than I can keep track off, and at least 1 cuddle time a day. I know its been hard on her with the year we've had then throwing in moving and getting rid of alot of her stuff, Im shocked she hasnt acted out more. We've done the best to make moving fun for her. We let her choose her own room and promised to paint it purple for her. Made sure her toys were easy to access at all times as well as her cartoons. Throughout all of this, Liam's handled it the best. He's been toted around, stuck in a carseat, bouncer, crib, jumper, or playpen at all times. His environment completly changed on him. Most babies would feel the stress, Lanie did when we moved when she was 1. Liam has been perfect. I think its due to all the hospital stays and environmental changes. Working on a house, packing, moving and unpacking is alot of work and very stressfull. Its taking more time to unpack and put away than it would if Liam didnt have so many medical needs. Basically our life is crazy. Its so easy to be angry about Liam's condition. Its finding that white light, or good in the situation thats hard. Ive been working very hard on looking at the bright side. Because of Liams condition we have met so many wonderful people. People that have changed our lives, our hearts. Because of Liam's CDH we are telling everyone Liams story and doing what we can to spread awareness. If it wasnt for Liam being born with CDH we would have never known anything about it, would have never known how hard it strikes and how much it hurts. Im not saying Im ok with it or that I would have chossen it if I had the choice because God knows I wouldnt. But I want to take my families experience and do what I can to make a difference. Imagine having a 4 year old and a normal 1 year old then taking on such a big task, then add in special medical needs for the 1 year old. Some call me crazy but Im determined. Besides listening to a 4 year old say "Congenital Diaphragmatic Hernia" is pretty darn cute. Liam has become more of a 1 year old now than the sweet baby he was. He's more interested in playing now than ever. He more interested in sitting up and playing with toys then rolling around. He uses his voice to try and tell us what he wants and he copies just about everything we say. He's come a long way from the NICU and we couldnt expect more from him.










Monday, July 16, 2012

We made it

WE MADE IT!
We made it through NICU,
We made it through Liam's first year,
We made it through the emotional first birthday party.

The Birthday Boy! 

Cousin Caleb

David and Kim

Liam enjoying his gift from Uncle and Tia

Uncle Cliff's first time holding Liam

"He's gotten so big"

First time meeting cousin Christina

First time meeting cousin Shannon

Loves his Tia

Cousins Stephanie and Chuck

"Mom im tired"

And two minutes later he's out

Everyone watching Liams 23 minutes video


Liam's first cupcake!
He didn't eat it but he did a great job making a mess so mommy could get some cute pictures.
Our balloon release.
It was very emotional making the speach to let everyone know the significance of the release and the one pink balloon.
The pink balloon was released in memory of Maddie Spence.
When we couldn't be there for the first few days of Liams life at UCSF, the Spence's were there. They prayed over Liam and watched over him even though they didn't know him or us. They were a gift from God and a huge reason why I survived the NICU.

Elva and I have been friends since JR High


My family from Bakersfield

The Bryant's


Wednesday, July 11, 2012

Rewind

With only two days left until Liam's first birthday, Im feeling a huge amount of anxiety and an overload of emotions. In a way I can't believe he's already going to be a year, yet it feels like its been years in our CDH journey. I remember the day Liam was born like it was yesterday. I had gone to the hospital in labor for what seemed like the hundreth time and when the doctor came in and told me they were going to preform a c-section within the hour and our little man would be in my arms. I cried for many reasons. I was so happy that I would be able to hold my bundle of joy in my arms and in disbelieve that it was really over. The end of my pregnancy had been so painful and no one had known why. I cried because I was so happy that the pain was finnaly going to stop.
    Week 35 Day 5 (last pregnancy post)

Why the pain? Well when the surgeon opened me up he saw my uteros was already torn open and that had caused me to go into labor and be in so much pain. That pain didnt compare to the emotional pain I felt when we were told about Liam's condition.

 We were very blessed when it came to Liam's condition. Once he was off ECMO and had his repair surgery, he flew through the stages just progressing rapidly and healing. After 6 weeks in NICU Liam was discharged and we brought him home for the first time. For a baby with CDH 6 weeks is a short time to be in NICU. Most are there for 3 months or even years in some cases. We had prepaired ourselves for the long haul so when they approached us just a few days before and told us he was going home, we were utterly shocked. They asked us if we felt he was ready. We responded:
     "Do YOU think he's ready?"

Ofcourse WE were ready to take our handsome Monchichi home but we werent in a hurry. And we absolutely in no way going to rush the doctors. They felt he was ready so that was enough for us. It was a suprise to everyone. The doctors hadnt even expected it, they didnt even have time to discuss it really. Liam was just making such a miraculous recouvery. If it wasn't for our primaries Sue Dehaun and Cindy Silva spending every shift teaching us and readying us, we wouldnt have been ready. Thats the difference between nurses and amazing,smart, talented nurses who not only think ahead but care for their patients. We will never be able to thank them enough for their support and their part in taking care of Liam.

Sue (affectionately dubbed Dr Sue by Lanie)
Everyday was a new lesson on Sue's shifts.
From day one she started going through the discharge learning
protocol. When she would do anything with Liam she would explain everything. Sue volunteered to be Liam's primary and Im not sure if its because she fell in love with him, or because shes a mom and saw a young girl struggling to deal with her new born sons condition. Maybe alittle of both Im not sure. She had a way of putting my mind at easy as well as keeping my mind busy concentrating on things. She kept egging my on until I took up a few classes UCSF offered for parents. She knew when I needed a break and made sure I took one and made sure I ate. Sue was great with Liam. She would always talk to him, even when he was paralyed and sleeping. She could tell by his STATS his moods and if he was in pain. Liam loved messing with her. He learned quick what would make the machines go off and do it. She's walk up to him and say "Now now Mr. You better stop that" or "Theres no crying in baseball" (always my favorite saying). When his paralytic would start to wear off, he would peak his eyes open and look toward her voice and as soon as I said something he would shut his eyes before she had a chance to see. After the 5th time she would just stand there and staire. Then he would open his eyes to peek out, She'd tell him how naughty he was being and he would smile at her. Ofcourse then he'd get another dose of paralytic because he wasnt supposed to be awake. She wasnt just great with Liam, she was great with Lanie. She would put lanie to work making her help get supplies from the supply closet and what not. She spend alot of time answering Lanies questions and explaining things enough for a 3 year old to understand. I think the most important lesson I got from just watching Sue was that just because Liam had CDH didnt mean he had to be babied. Sure he needed special care but putting him in a bubble wasnt what he needed. Thank you Sue. We love you and miss you!



Cindy is such an awesome person and nurse.
She had this bond with Liam that most nurses or doctors wouldnt bother to get. Cindy was alot like Sue, always teaching us and giving advice. We spent alot of time laughing over the little things Liam would do. She would share stories of her kids. Cindy had a special bond with Liam. Liam reacted to people the way they would react to him. She would talk to him in a gentle voice and tell him everything was going to be fine. When he was finnaly able to be held, she would hold him as much as she could. I would come in from break and she would look at me and smile big and say he had been throwing a fit and just wanted to be held. Liam was always content in her arms. Even after we left NICU we kept in touch. Every now and then we'd get an email or Id send an email. Cindy is just awesome. We thank you for taking care of our little man and youll always be part of the family!!

We couldnt have asked for better nurses or better care.
I try not to go down memory lane because of the emotions and the PTSD but when I do I like to concentrate on the possitives because it makes it easier to deal with.
God has truely blessed our lives.

When Liam turned One Month we were estatic. Still we didnt really know if he would make it to be a year old. Everything seemed to be going great but we knew Liam. He would go forward then suddenly go a few steps back. Liam survivng CDH and turning One is overwhelming, joyous, and just a blessing. He is our miracle.

"And he went a little farther, and fell on his face, and prayed, saying, O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt."
Matthew 26:39


Tuesday, July 10, 2012

Liams One Year Pictures

Our handsome is turning one on saturday!!!

And the birthday boy needed his picture taken.

Ofcourse Mommy was all too happy to oblige.

Even if Liam wasn't.

Our lottle line backer in training.

And ofcourse Liam laughed at me when I asked him to smile.

Then he's just stare at me.

So I tickled him.

Until all I had to do was look at him and he'd laugh.

Its ok because mommy loves him smiles.


We hope you have a great birthday little man!
You are our miracle.
You've changed our lives.
And we love you from your nose,
to your little toes.