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.

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

A Trip Down Memory Lane Aug 23 2011

4 years ago today we got word that it was official our son would be headed home for the very first time. Everyone was shocked. The doctors stood their staring at him, literally scratching their heads then told us they didn't know how he'd done it but he was ready to go home!! Hubby and I laughed at them saying "ha ha very funny" as if they were just joking with us, which we thought they were. Turned out they were dead seriously. They just couldn't understand how he went from not expecting to live to flying through NICU and surviving. We told them it was because he prayed. We had people all over the world praying for him. We believed God would give him the strength he needed to fight. And I knew he had plenty of fight in him to win. I told him so everyday. I thank God everyday for him and for everyone who prayed and continue to pray for Liam. ❤️❤️❤️ #cdhawareness #nicugrad #likeaboss #nevergiveup

My NICU PTSD Experience

PTSD doesn't just effect those who've been to war or in the military. We learned the hard way that it effects families of those whose children are born sick and spend time in the NICU watching their baby struggle and almost loose the battle. When I was first told by a NICU nurse that she thought I had PTSD I was confused and asked why she thought that. After talking to her extensively about it, it became painfully true. And even more painfully true as my doctor back home diagnosed me with it as well. It was hell. Reliving the heartbreaking tragic moments over and over again. Flash backs and nightmares. The crying and freak outs. I never knew when I would have an "episode". I am thankful that 3 1/2 years after Liam was born that I haven't had an "episode" in a while and the last few nightmares I had I was able to get through and not let the feelings linger. In a way I feel blessed to have gone through this journey because it has only made me and my family stronger and now we get to concentrate on the present and making up for lost time. We try to enjoy each day for what it is. God gave us a little boy that can overcome anything and a little girl who has learned to overcome anything in her path and loves with all her heart. We could have walked away from this sad and miserable but we choose not too because life is too short. We choose not to let the bad take away the good. The first year was the hardest. The second came real close. His third year has been a complete different experience and for that we have to be thankful. If you aren't thankful for what you have then you don't deserve to have it. I won't say that I'm 100% PTSD free. I don't think I will ever be. But it's manageable and will get better with time. Maybe it's Gods way of reminding me that sometimes you have to have nothing to have everything. When I was on my knees (well stuck in bed after an csection) I ran to God. I prayed, begged and pleaded for Liam to survive. I confided in him and told him that I truely didn't think I was strong enough to go on without my baby boy. It was the weakest I've ever felt in my entire life. Everything about NICU seemed like my own personal hell. The first week was difficult to say the least. I couldn't take anything good from the experience. All I saw was hell. All I did was pray. The beeping of the machines. The alarms going off telling us something was wrong. The tubes, wires, all overwhelmed my tiny little boy laying on the bed. On many occasions I was pushed out of the way so that they could help him. I didn't mind being pushed. I got out of their way as fast as I could knowing that his life was in their hands, and Gods. Day in and day out, I sat there alone listening to the beeping. When the day came for his repair surgery, I sat there alone, not knowing if he would make it through the procedure or the critical days to follow. I can't say I processed things properly. I don't even think there's a proper way to process it but I did the best I could. I'm happy and blessed to be in a much better place mentally now than I was then. I reach out to other parents who've gone through this or are going through this and help them in any way I can. It's my way of overcoming and making sure no one goes through this alone like I did. It's a rough road and you come out with scars but you can survive. 

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.

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.

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. 

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

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.

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