Our SanFransisco

          When you think of SanFrancisco you think the Golden Gate Bridge. The iconic red trolleys. Walking down Haight and Ashbury streets. Or maybe you think of Alcatraz where Al Capone, George "machine gun" Kelly and many other natorius criminals were improssoned. Maybe Fishermans Warf comes to mind where you can get fresh seafood and visit the wax museum. 

          I can tell you what the Golden Gate Bridge looks like from a distance but can better tell you what the Bay Bridge is like to cross during a heavy rain storm that all but flooded the bridge, while worrying and rushing to get to my son who had been flown to UCSF. 

          I walked Haighy and Ashbury streets a million times but it wasn't to sight see. The first time I went down them was to find the Goodwill to buy jeans that fit after weeks in NICU, 4 hours away from home and my own clothes after giving birth to my son. I walked them a million times after that to get from the Ronald McDonald house across town to the hospital every weekend to be at my sons side. 

          I can give you historic facts about Alcatraz I learnt in school or on the Internet. I can also tell you how we made plans to visit after Liams escape from NICU but never got the chance. 

          I can tell you that you can't visit SanFransisco without exploring Fishermans Warf but I can't tell you how it smells to walk along the shops and restraunts or how long it takes to explore the wax museum. 

          But I can tell you how the hospital smelled of soap and dissinfectant. I can tell you that at 7am there's a long wait for the elevators and an even longer ride up to the NICU on the 15th floor. How I stood in silence every day, squashed into a corner in the elevator trying not to let my claustrophobia get a grip on me just so I could be at my sons side. How I had to go down to the 7th floor at 11am everyday to reserve a bed in the mothers sleep room so I could get a few measley hours of broken sleep. 

          When I think of SanFransisco I think of the 6 blocks I had to walk with luggage in tow every week to the laundry mat to wash my clothes. How in the 48 days there, I never had a few moments of privacy to cry it out. And when I held Liam for the first time how nervous and scared I was and how he turned blue on me. How years later I still have problems holding someone's baby because I flash back. 

          SanFransisco was a tough city for us. The worst of times with Liam and CDH were there at UCSF. But it wasn't all bad. When I finally got to hold Liam a second time and he didn't turn blue on me but held my finger and looked up into my eyes until he fell asleep. And how my husband called from home as I was holding our son and I cried telling him how wonderful it was to finally have our little miracle in my arms and how I never wanted to let him go. 

          The first time we took a nap together was there in NICU. Once you got used to holding a baby attached to hundreds of tubes and wires it was easy to get comfortable and fall asleep. The first time I got to change his diaper I was so excited. Finally I got to do something all moms do with their kids. I didn't care that it was diaper duty. I grinned from ear to ear and had anyone nearby snap a picture for me. 

          Our first family picture was taken in NICU by one of Liam's nurses. That picture is still framed in our living room. And when Liam finally started needing clothes and toys, how happy I was to be able to run out and get whatever he needed that second it was requested. And when we were told he was going home and how happy and shocked everyone was. 

          That's my SanFransisco. All our good memories wouldn't even be possible without the amazing NICU staff. Our two primary nurses who didn't just look after Liam, but me too. Having our little boy survive what he went through is hugely due to their hard work, dedication and their love for our little boy. 

          And since its NICU nurse appreciation day, I want to thank these two lovely ladies, Cindy and Sue because without them we wouldn't have our sweet boy. Without then we wouldn't have been prepared or equipped to deal with his needs when we got home. Without them I wouldn't have survived NICU unshattered. 

          That's my SanFransisco. Full of misery and wonder and miracles. We owe it to ourselves to go back and take it by storm. To enjoy the sights and the tourist traps. And to thank our beautiful NICU team for saving Liams life. 

Nurse "Doctor" Sue (as Lanie called her)

Nurse Cindy

NICU Nurse Appriciation

Today I want to take a few minutes (or a few lines) to say thank you to the NICU staff at UCSF for caring for my little Liam.

Mostly I want to say thank you to do particular nurses:

Nurse "Dr. Sue" as Lanie calls her:

Sue,

Wonderfully Brass Sue. Your "touch love" got me through so many hard times. You recognized when I couldn't emotionally handle a kind word. You seemed to know just by looking in my eyes whether or not you could be kind or go straight to the facts. You prepped me from the first day. Made sure I would be ready when time came to take Liam home. With your teachings I became confident that when the time came I would be ready. You offered me a tissue and a pat on the back when I needed. You let me cry when I couldn't hold it in any longer. You fought the doctors for Liam when you thought they were wrong. You were strong when I was weak. You were the mother figure I craved for when I was alone and scared. Because of your teachings and the knowledge of what to expect, I was able to stay strong for my son. When Liam was finally able to cry you used to tell him "there's no crying in baseball" and he used to hush for you immediately. We still laugh about it, as well at the times his sedation wore off and he would mess with you by opening his eyes to look around, yet just when you would turn around to see he would close his eyes. He loved you. He bonded with you. You made us both strong. I can never thank you enough for what you did for us. Your care for Liam has forever changed our lives and we are so thankful and feel so blessed to of had you.

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To: Cindy:

Sue,

I don't even know where to begin. You were the emotional one. The one who would hug us when we were down. The one who always knew Liam was upset before his monitors would even show it. You fought for Liam and what was right. You also taught us how to care for Liam once we got him home. You knew this journey would be emotionally hard on us even after NICU and tried to give us the tools to get through it. You recognized the signs of PTSD in us and because of that I went to the doctor when I got home and got meds. If you hadn't of recognized the signs, if you hadn't of said anything I wouldn't of gotten help, and I wouldn't of been able to handle everything I went through at Liams side. For you Liam would always smile. I knew he would throw fits until you would pick him up and love on him if that's what it took. But no, you loved him with all your heart so he only had to look at you with those big brown eyes and you'd cave. He'd win and you'd get to hold him. Many times I remember walking in to see Liam and there you'd be holding him, rocking him or just talking to him. It was a sight that always pulled at my heart strings. I knew when he was with you I had nothing to fear. I will never be able to thank you enough for loving him and fighting for him. Thank you Cindy.

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Thank you the wonderful NICU staff Liam survived what should have killed him.

And now he is a happy, mostly healthy little 3 year old boy.

Thank you, Thank you, Thank you.

A Year Ago Today...

A year ago today, we were sitting in NICU getting ready for another try at excubating Liam. Liam has failed being excubated several times prior to this but we kept faith. We knew that there was a chance he still wouldn't fly but we were prepaired. This was the process, the journey, full of ups and downs.

And today....

Liam spends his days surrounded by those who love him. We never get enough of having him here with us. Even when all the breathing treatments and meds and other needs make me feel exhausted, I look at him and his smile fills my heart with satisfaction and content. His big sister wakes up every morning, goes into his room and tells him 'good morning'. She loves trying to teach him new things and "showing him how to play with his toys".

I also have super GREAT news to announce. Its been exactly..................

  9 WEEKS SINCE LIAMS LAST HOSPITAL STAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is the longest stent we've ever had him home!!!! Next weeks it'll be 2 1/2 months!!!!! THANK YOU JESUS!!! And thank you everyone who has been praying for our little lamb. We hope that you will continue to keep him in your prayers.

Liam still has his cold but he's doing really good. Our next little journey will be with physical therapy, feeding therapy and OT. He needs alot of prayers and help in these areas.

 

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

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. Sent from Yahoo! Mail on Android

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

Praying For Strength

I'm needing comfort, strength and prayer.

The LORD is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him.
Psalm 28:7


I am having a hard day, a hard week really. Everyday something new and not so good happens. I am tired. I refuse to be weak.

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."
Joshua 1:9

Wait for the LORD; be strong and take heart and wait for the LORD.Psalm 27:14

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.Isaiah 41:10


The LORD is a refuge for the oppressed, a stronghold in times of troublePsalm 9:9


Liam is doing better today. I text his pediatrician as he directed me to do today if he was still techypneac. I got a responce not long ago saying that he wanted to contact the CDH team at UCSF and if I had their direct number. I game him the 24hour line. I had a million question running through my mind. Things like:
What are you looking for?
What are you worried about?
Do you think it could be re-hernation that the xray didn't catch?
Could it be pulmanary hypertention?
Instead of baggering him with a million questions that would at all help me, I asked one simple question. Do I have anything to be worried about at this point? It seemed to be the question that mattered the most. The only one that really mattered. He told me that I shouldn't worry at this point, he just wanted to contact them and find out if there was anything he needed to do specifically. If there was a specific area he needed to investigate. Something that would yeild results as the xray did not. I refuse to let myself start a down hill spiral into worry. I refuse to be weak, I refuse to cry. I find myself in a position yet again where I need to turn off the switch to my emotions and let the analytical part of my brain rule. This way I can study the facts. Think logically, not irrationally. Liam has been through so much and overcome more than anyone thought he would. He is strong, he is a fighter. He needs me to be strong, Lanie needs me to be strong. I am leaving this in God's hands. The Lord will watch over him, protect him. He will take my worry and because of him I will find strength and courage where I would be weak.


The LORD is my shepherd,
I shall not be in want.
He makes me lie down in green pastures,
he leads me beside quiet waters,
He restores my soul.
He guides me in paths of righteousness
for his name's sake.
Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.Psalms 23