Standing Tall

(Taken September 9th, 2012)

Yea I know he's crying but I took a moment to capture this moment in a picture. What appears to be nothing out of the normal to you, was something huge in our world. The aftermath of CDH was tremendous. Sure he flew through NICU at a "mere" 48 days when he wasn't expected to make it but we lived with the devastation of CDH every day from the moment he was born. 

So here is my son, 14 months old at the time. Just a few months prior to this, right before his 1st birthday, he learnt how to sit on his own. He was still wobbly and fell over more often than not, but it was a huge feat for him. Then at 14 months old, he graced us with another trick and pulled himself into a standing position all on his own. 

We were in the hospital and I had "mistakenly" taken a moment to use the restroom. Because of this he had to be put back into the crib. He was fine until I got out of sight for longer than 30 seconds. When I didn't show my face after his grace time, he started crying. Now remember, Liam still did not talk. I rushed out to find he pulled himself into a standing position. I then started crying. 

I snapped the picture then ran to his side. I hugged him, but left him standing because I couldn't get enough of this wonderful sight. The nurse walked in to find us both blubbering away. I started laughing through my tears and Liam followed suit. Soon the tears were gone and it was all laughter. I explained to our nurse what had just happened. She excitedly told Liam what a good boy he was then explained how we forever more, would have to not only keep the bars all the way up at all times, but put a hood on the crib to prevent climbing. I laughed. Liam's great feat resulted in a full on cage to keep my monkey boy in. 

Some of the after effects of CDH were low muscle tone, delayed development, poor fine motor skills and more. Being in the hospital as much as he was, also affected his development. Liam spent more than half his life stuck in a hospital. If you were to adjust for that, he would only be around 2 years old. Because of hard work and determination, he began catching up. It took daily activities at home but we made it fun. By the time he started preschool in 2015, he appeared "normal"*. He was running and jumping with the other kids. He couldn't keep up, but he tried with all his might. 

*The term "normal" here is a realative term. I know that normal isn't really a thing so when I use this, I'm referring to health wise. You have the "normal" kids who are healthy. Then you have the other kids who aren't healthy, like Liam. When I say things like "we wish we had a normal life" to referring to the fact that we wish for healthy. And now that we've lost Liam, our lives are just even farther from normal as you can get. 

CDH Awareness Shirts

CDH awareness is an important part of our daily lives since Liam was born with it. 

Before he was born with CDH we had never even heard of it and we learned that that's the case in most scenerios. We are really hoping to make a difference and change that. 

When Liam was born he was put on ECMO as a last ditch effort to save him but the doctors didn't think he would survive. Babies born with CDH have a 50% survival rate. Those who have to be put on ECMO have less of a chance. Those who have to be transfered from one hospital to another have their odds cut drastically. In Liam's case the hospital he was born at didn't know he had CDH at first and tried to bag him in an effort to open up his lungs. That's one of the biggests No's you can do and the reason he was so sickly. Because of all this Liam wasn't expected to survive. 

We want to spread awareness and help other families effected by CDH. We donate items to our local Children's hospital to help kids admitted find some comfort. Hats, blankets, toys, books and CDH awareness info. 

I also create awareness graphics and tshirts. 

Our current fundraiser to help us continue to spread awareness is a black shirt with a logo I created. 

There is only 11 days left to get this shirt. Know that every penny we get from this fundraiser will go to spreading CDH awareness and donating to our local children's hospital. 

http://www.booster.com/s4lcdhawareness

Diaphragm Paralysis

I remember when I first heard that Liam's left diaphragm was paralyzed due to CDH and/or Repair. I was freaked out. I didn't know what to expect. The specialist would skate over the issue and just say that he would be ok but they'd keep an eye on him. When we found out that Liam also had a defect in his right diaphragm, therefor he was rediagnosed as bi-lateral CDH, they said they wouldn't touch it unless they absolutely had to because of his left diaphragm already being paralyzed. When you get the news sometimes the info goes in and right back out. So I researched it so that I could refresh my memory:

* Diaphragmatic paralysis, whether it occurs in one or both sides of the diaphragm, is uncommon.

*Whether the paralysis occurs in one (unilateral) or both (bilateral) sides of the diaphragm, all patients will experience some amount of reduction in lung capacity, particularly noticeable when lying down.
Liam's left diaphragm is paralyzed and due to that and pulmonary hypoplasia his left lung hardly functions. He requires daily breathing treatments to keep the lungs open. One treatment is a steroid.

There are many reasons Diaphragmatic Paralysis occurs but for CDHers its usually because:
*The phrenic nerve didn't fully develop or develop properly
*incurred surgical trauma

Patients with diaphragmatic paralysis may experience shortness of breath, headaches, blue lips and fingers, fatigue, insomnia and overall breathing difficulty.  Also:

• Unilateral diaphragmatic paralysis may go undiagnosed. Often patients compensate for the discomfort of reduced lung capacity by sleeping in a semi-upright position or reducing physical activity when there is shortness of breath.
• Bilateral diaphragmatic paralysis presents more severe symptoms, which leads patients to seek medical attention. The shortness of breath is more severe, even with mild exertion.

Newborns and children with unilateral diaphragmatic paralysis may experience more severe respiratory distress than an adult, due to weaker muscles and a more compliant chest wall. The newborn may have a weak cry or show signs of gastrointestinal distress, with frequent vomiting.  Children with bilateral diaphragmatic paralysis require immediate medical attention and ventilator intervention because the condition can be life threatening

The tools used to diagnose diaphragmatic paralysis include:

• Pulmonary function testing while lying down and again while upright.  Lung capacity is often reduced about 10 percent when a person is lying down; patients with bilateral diaphragmatic paralysis may experience a 70 to 80 percent reduction in lung capacity while patients with unilateral diaphragmatic paralysis may experience a 50 percent reduction.
• Chest X-rays or an upright, inspiratory chest radiograph.
• A blood test to measure the amount of oxygen in the blood.
• Measuring transdiaphragmatic pressure and thickness.
• Phrenic nerve stimulation testing.
• Electromyography, a test that evaluates and records electrical activity produced by skeletal muscles.
• Computed tomography (CT) scanning of the thorax and/or abdomen.
• Magnetic resonance imaging (MRI) to determine if there is an underlying condition involving the spinal column or nerve roots.
• Ultrasound to see the activity of the diaphragm and to identify any unusual movement or lack of movement.

Treating Diaphragmatic Paralysis

Physicians take into consideration the overall health of the patient, the severity of symptoms as well as any underlying cause for the paralysis:

• Diaphragmatic plication, a surgical procedure that pulls the diaphragm down, is commonly used in patients with unilateral paralysis.  The surgery allows the diaphragm to moves so as to expand better and improve ventilation.  Patients with more severe symptoms, such as a respiratory infection, asthma or COPD (chronic obstructive pulmonary disease), can benefit from diaphragmatic plication.
• If the patient has no symptoms, or the symptoms are mild, and the patient is in otherwise good health, no treatment may be necessary.
• Breathing pacemakers may be used in patients who have functioning phrenic nerves, such as patients with ALS or spinal cord injury. The devices may result in improved respiratory function and lower infection rates.
• Thoracoscopic diaphragm plication may be an option for some patients, resulting in a shorter hospital stays than other techniques.
• In severe cases of patients on a ventilator due to bilateral diaphragmatic paralysis, the diaphragm might be plicated to help get patients off the ventilator.
• A tracheostomy, the surgical formation of an opening in the trachea, helps allow the passage of air.  This approach is commonly used for patients with a life threatening disease or a diagnosis of high quadriplegia.

Liam had been on a ventilator at birth and slowly weined to CPAP, then a nasal canula and off. He's required oxygen on and off for the last year. A common cold or flu and his lungs need the additional support of oxygen. Since a plication on his already repaired left diaphragm, we know that doing another one will not help. His right diaphragm needs a plication but in Liams case it is too dangerous to do for several reasons:
*They cannot risk his right diaphragm from becomming paralyzed because it will cause more lung issues than he already has. With him having Chronic Lung Disease his chances are lower of being able to breathe without a vent.
*Liam's body creates alot of scar tissue and because of all his surgeries his abdomen is full of scar tissue. Scar tissue if harder to heal and work with. Because of all the scar tissue they cannot do a plication laprascopically. They would have to open his chest cavity and that is a risk no surgeon wants to take.

Prognosis for Diaphragmatic Paralysis

The prognosis for unilateral paralysis is quite good, providing there is no underlying pulmonary disease.  Sometimes, patients recover without any medical intervention.The prognosis for bilateral paralysis also depends on the overall health of the patient but surgery may be the best option for patients who continue to have a poor quality of life.

(Follow the link to read the full article from Cedars Sinai http://www.cedars-sinai.edu/Patients/Health-Conditions/Paralyzed-Diaphragm-Diaphragmatic-Paralysis.aspx )

 

Brightstart/Physical Therapy Day

Today Liam had Brightstart and Physical Therapy. They were amazed at home quickly he’s learning and how every week he shocks them with new skills. Today he showed them how fast he can crawl, sho we uses his walker the wrong way to walk around the house, how he travels the furnature and more. The physical thereapist said she was very pleased that the only advice she could give was to put him in high top shoes so he wont walk on his toes. She said he was doing so great that there was nothing she could add to the mix. We just set new goals about a month ago and Liam has already surpassed them. This is what happens when Liam stays healthy and away from the hospital for a few weeks…he thrives!! He’s also had a growth spirt. Just 2 weeks ago we started putting him in size 12 month clothes (he’s 15 1/2 months old) and already he’s growing out of them. He’s getting long and chunky. His belly actually has normal baby chubby rolls! Alot of CDHer’s are skinny and up until the last 2 weeks, Liam was no exception. His body was so small his normal sized head looked too big. He is now looking more porportionate and like a normal baby boy. To this we say… WHOOP WHOOP!!

A Look Back at Last October

 

This time last year we spent our time at Childrens Hospital with Liam. He was admitted for Failure To Thrive, vommiting and not tollerating feeds. He was 3 1/2 months old and had only spend a total of 2 weeks at home. We were scared. Liam ended up staying in through October into early November, a total of 6 weeks straight during this stay. He ended up needing a Nissen Fundoplication and a G-tube. We are so very happy that this year, Liam has NOT been admitted at ALL during the month of October (lets hope it stays that way) and that we are getting to spend Halloween at home, the way it was intended. It's Liam's first Halloween home and we are so very happy for that.

 

 

 

New toys

 

 

 

Liam got a “new” toy today. A lightening McQueen stuffed rocking toy I found a a used kids store, ‘Twice Upon A Time’. I wasn’t sure how well he’d do with it but turns out he isn’t scared. I put him on it, showed him out to rock and he was off. Lanie got a new hat, a cheetah print cat eared hat she picked out, a “new” outfit, and a new ,monster hight dolls. I love being able to spoil my kids now and then. <3 p="p">

And the random things they do keep me laughing. Like Liam crawling into the lid of his mega blocks container and just sitting there. The standing on his head.

S4L Christmas Toy Drive 2012

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.

 

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  :)

cherubliam@yahoo.com

 



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.

I have exciting news to report. Atleast I thinks its exciting. Its a great breakthrough.

First of all Liam has been off oral steroids for a little over 48 hrs now. He only desats occasionaly but goes back up on his own. Still its only been 48 hrs and liam has been known to wait a few days to a week before major desatting.

Pulmanology isnt going to do the bronchio scope until he starts desatting alot. Pulmanologist was trying to arrange it for us to be set up at one of the houses or a hotel and discharge liam to keep him close and have us check in everyday. But pedi surg isnt done with us yet. Miniatis plan as of yesterday was to repair the right diaphragm later this week if pulmanology didnt find anything. Pedi surg didnt come by today, i think tuesdays are big surgery days for them, so I wont know more until tomarrow.

Liams swollow study yesterday was amazing, didnt get a chance to blog it. It test showed that he has amazing oral control and perfect swollowing. Hes just alittle butt that likes to spit the good he doesnt like out at you. Also we learned that if he doesnt want the food he fakes coughing and retches. Its funny and frustrating. It means hes going to fight oral feeding immensely.

Because the swollow study went so well we got to start solids again yesterday. We fed him stage 1 sweet potatoes and stage 2 bananas. Banana was a new taste for him and he didnt know what to think about it at first but ended up eating a healthy portion. We also learned that stage 1 foods and liquids he has an aversion for because theyre too liquidy.

Today I talked to our wonderful nutritionist here Carey. She recommended doing baby foods with meats because of the callories being higher. She also recommendedwe get liam off elecare. We talked about his supposed severe food allergy and because theres were never test done we both agreed he probaby didnt have one. I told her about the soy we started using in december before all the respitory issues and she also agreed that he probably is lactose intolerant. So today liam started prosobee soy formula. Hes been doing perfectly fine. You cant even tell we switched formulas.

I was able to order liam lunch for the very first time today. It was exciting. I stuck with what Carey told me and ordered liam some foods with meat in them:
Chicken and brown rice
Beef, carrots and corn
sweet potatoes

We started with the chicken. Liam though I was crazy trying ti feed it to him and he fought me with every bite but we got in a good 8 bites.
Then we switched to the beef. Even though it was stage 2 it was thick and very grainy. Liam liked this least of all. He started his fake coughing and retching. After a few bites I finnaly got the bright idea to mix it with the sweet potatoes to thin it. The newly created mixture was better. He ate alot. I think he liked it even though he tried to spit it at me a few times. Liam ate more than he ever has.

And even though liams feeds have only been increased for a few days and we only started solids yesterday, im seeing weight gain. His little cheeks are getting so puffy and his leg rolls are getting rolls. I swear he grew a stomach over night, like an almost normal baby stomach. Its happening so fast that its almost like hes just swelling.

Liams getting so much better at sitting. Yesterday he sat all by himself for like 2 min no help at all. Today he sat on my lap and rocked himself back and forth. He also played in his bed. For liam today has been such a big day.













Although Im always asking you guys for prayers, tonight I have a request for other families. I just found out tonight that there are othef CDH families currently here. One family is here on the 6th floor with me. I have yet to meet them but would love to. Theh are here for a repair of reherniation is what a nurse said. There are also 3 babies up in ICN right now fighting for their lives, 2 of which were just born yesterday and are on ECMO. For 1 baby the out look looks grim. I remember being up in ICN and all those feelings. Please pray for these families and their sweet babies. Im casting aside my own worries tonight and concentrating my prayer o these families. I hope thag I get a change to reach out to these families. Thank you for your continued support.

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