Bringing Bbay Home...A Year Ago Today

Most parents get to take their bundles of joy home within 3 days of birth. Most families give birth to happy, healthy babies. Most families don’t have to experience walking out of the hospital empty handed. We’re not most families. A day and a half after Liam was born I walked out of the hospital empty handed. I didn’t know if Liam would survive being born with CDH. As the nurse wheeled me down to the car, I fought back the tears. I tried to build a wall to block out my pain, my anger, my confusion. After a 4 hour drive to UCSF and 43 days in NICU, we finnaly got to bring Liam home. We know how very blessed we are. 50% of babies born with CDH don’t survive. 50% of parents of CDHers walk out of the hospital empty handed to never see or hold their babies again. Praise the Lord that we didn’t have to experience that pain. Even though my heart is healing, there will always be scar tissue that is unrepairable.

A year ago today we said "goodbye" to one of our primaries, Cindy, and the awesome NICU staff and doctors.

 

 

Liam was placed in a car seat for the first time.

 

We traded in his name bracelet for a pair of shoes

 

 

Bundled him up for the SF weather

 

 

And after waiting so patiently,

Big sister finnaly got to hold her baby brother

 

 

Tia finnaly got her arms on her nephew

 

 

Cousin Kayla finnaly met her little bean,

and balled like a "baby"

 

 

Cousin Chase got to hold his cousin and see him healthy and without wires or tubes for the first time

 

 

Grandma and Papa got to hang out with little lamb,

hold him and love on him.

 

Today we rejoyced in Liams homecomming anniversary.

The day didnt start out perfect. It started out with Liam having a fever from teething, but it ended very well.

 

After the teeth pain and fever were gone Liam was in an excelent mood

 

Kayla got to hang out with her bean.

 

 

We played pass the baby

 

 

 

 

 

Nicole let Liam wear her glasses

 

 

Then she made me laugh

 

 

Then he decided to take pictures of himself :)

 

Other good news is that Liam is now maxed out on ML's and calories again in his Gtube feeds. Its the first time his stomach has handled feeds since about 5 months. If I can get him to handle 48mls for 20 hours we will be exactly what we were at on his GJ feeds. Praying he can. He only retched in the early mornings now, which is his usual. I have to check in with the GI tomarrow so Im praying he decides that we can put off the GJtube surgery for awhile longer and give Liam a chance to thrive with the Gtube. Things happen for a reason.



Disaster Friday

It seemed like everytime we turned around yesterday something disasterous struck. From the time we woke up, or got woke up, the day was bad. It started with the 6:30am phone call informing us of Justin's Grandpa's passing. We knew it would eventually happen but still it was shocking. We spend most of the morning trying to rise out of the fog we were in. We decided to stick with our plans for the day since there was nothing we could do to change the mornings events. We took the kids to the Tulare Outlet and did alittle shopping.  After 3 hours of shopping and walking, Liam vommited formula. I knew it wasnt a good sign. I took him to the car to change him while Justin went into another store. I unbutton his outfit and see the balloon that keeps in Liams GJtube. I freaked. I called Justin and he came running. The only part still in his stomach was the very tip of the Jtube. We have no idea when it happened. Liam never cried or made a peep. After I called his ped and his GI the conclusion was to take him into his GI's office so his nurse could put in a Gtube. From Tulare we rushed to Exeter and praise the Lord, they had no issues putting in a Gtube. This event just put us further into our fog. Justin thinks it might have been his fault. He thinks his Gtube extension got stuck when he was putting him in his carseat earlier that day. I however am not sure if that was if but its the only thing we can think of. Unless little man grabbed it through his clothes and pulled really hard when we werent looking. And considering Liam didnt need a diaper change, or a clothes change we had no idea this had happened until I went to change him. Liam is now schedueled for surgery on thursday to place another GJtube. Because of Liams feeding issues, weve had to drastically slow down his feeds from 48mls per hr x 20 hrs to now 20mls per hr x24 hrs. We started at 15mls and worked our way up. We are increasing as tollerated. Unfortunately this means Liam is loosing weight every hour that passes and his breathing is already on a slow decline. He has required additional breathing treatments. We are praying that we can continue increasing his feeds to capacity. After we got home from the GI there was a not on the door that UPS tried to deliver a package. The package was Liams meds from Valley Childrens. One of the meds has to be refridgerated. Because they couldnt deliver it friday that will be trying to redeliver it monday but the icepacks arent going to hold out that long. After we left GI with the ok to continue our "normal" lives, we went home then decided we would continue as planned. We did the only thing that did not turn disasterous for us and went to a birthday party. We needed the reprieve. We've all been a little more nervous about handleing Liam, afraid that one of us might accidentally pull his tube out or that Liam will vommit on us. We are praying today will be better. We are also praying Liams lungs dont decline and cause issues for his surgery and that the surgery isnt on the same day as Grandpa's funeral.

R.I.P. Grandpa Beames

Stranger Danger

What happened to the "Good Old Days" when children yelled "stranger danger" and ran away from "danger"? I guess its time to install that into my daughter. We've been having some behavorial issues with her that have increasingly got worse. At first we were leiniant because we figured it was due to the birth of her brother and the upset CDH had on our lives. Today was a prime example of why we can no longer go easy on her.

So Justin took Lanie to the park today and she went where he could see her several times, he had  to search for her. She talked to strangers, thank God they were just 2 teenage girls, then talk to more strangers, a couple, not good, and even devulged personal info (name, age, where her daddy worked). When he got onto her and made her sit in timeout on the basketball courts with him she talked back and said she was telling mommy, she was going to through grass at him and made faces at him. So he brought her home where she is now in her bed after a talk about what she did wrong and how dangerous what she did was and talked back to me as well. Shes lost her snacks and her cartoons and on the verge of loosing all her toys for a week as well. We've done everything but clear out her roon of toys. Its so frustrating.

The reason I am posting this is because there are just some things that parents dont think of. We though telling Lanie to stay where we can see her and explaining to her not to talk to strangers back when would be enough. We never thought that this would happen. She had been well behaved untill this last year. This situation has made me open my eyes and realize "What else do I need to talk to my daughter about?"

So I did some googling:
The National Crime Prevention Council has a website that can help with some of those talks where you just dont know what to say.
What To Teach Your Kids About Strangers   

They have a ton of articles on topics like...
Bullying
Cyberbullying
Drug Abuse
Halloween Safety
School Safety
Even Senior Safety

So even if you think your kids know the basics in safety, its always good to gather more info and to have another talk with them. Lanie will be getting some day to day "training" in safety from now on.


 

Tubie Friends Forever

While Liam was off in dreamland this afternoon, he recieved a special package in the mail. Why so special? Because it contained his very special tubie friend!  Liam woke up to meet his new found friend and has seemed to declare that they will be "tubie friends forver".

 

 

 

 

Visit tubie friends

 

 

tubie friends is such an amazing group of people who volunteer their time to make these animals for children with feeding tubes.

All ready Liam has laid off his own tube and is now playing with his tubie friends instead. YAY!!

We also started singing a song we made up:

 

tubie friends

tubie friends

tubie friends forever

tubie friends

tubie friends

tubie friends stick together

 

Thank you tubie friends! And thank you to our tubie friends surgeon Brandis and her assistant Kaida. Liam absoltely loves his new best friend. Liams tubie friend also helped big sister get a good look at what Liams feeding tube looks like and has helped her understand and be more comfortable seeing her baby brothers tubie.

 

 

 

 

 

 

 

Words That Mean So Much

Today Liam and Lanie had a doctors appointment. Lanie always gets a clean bill of health, so it wasnt supprising that shes healthy. She weighed in at alittle over 40 pounds and 40 inches tall. She's ready for a booster seat :)

Liam had a pretty good visit himself. He now weighs 19 pounds and is still 27 inches long. This morning his button started bleeding alot. I told our ped and as it turns out, it was just new granulation tissue. Our ped was very happy with how well Liam is doing. We got news that Liam is now ready to be in a front facing carseat and that we're going to go 6 weeks without seeing the ped again.

Words are just words unless theyre strung together to say something. Its amazing how a few simple words, said just the right way, in a certain context, that melts your heart. Makes you loose all control of your emotional restraints.

Today our ped said a few different things that meant alot to me.

"You know Aubin, I think Liam is out of the woods now"
Its something I wasnt sure Id ever hear or something I was ready to hear. I was unsure at first what he really saidand responded "You know what, Im not ready to say that. Give me a few months to awknowledge and accept that before I agree with you". Ofcourse he started laughing.

Between that news and being told he felt Liam was ready for the front facing car seat and that, being told that Liam didnt need an appoint for 3 whole months put me over the top. The only reason Liam is going back in 6 weeks is for a flu shot. 6 weeks is a long time in our world. After all these bombs were dropped, I started crying. I just couldnt help it. Me being the way I am, I apologized for making a fool out of myself. What he said, just meant so much and made the tears fall little harder.

"He's doing really great. Youve been through alot with him and have taken great care of him. Your a great mom."

Today has been such a great day. Now if only the hubby could get passed the fact that he has issues with Lanie growing up so that I can put her in preschool.

Today:

We tried a few new hair styles during bathtime...

The mohawk

The Alfalfa

Lanie and Liam talking

Liam in a very playful mood

Theres the head stand again.

"See sissy, it doesnt hurt. Its just a little prick"

Liam didn't cry for his finger prick.

He only gave them a dirty look for holding his hand.

Lanie however was balling and freaking out thinking she had to have it done.

However when Liam made a peep she was brave for him telling him

"Its ok Liam, it doesnt hurt"

And rubbed his head.

Sure sissy,

you can be brave when its someone else!!

A year ago today...

We were in SF with Liam at UCSF.

It was a weekend so we had to walk to the hospital.

It was a beautiful day so we decided to take Lanie to ride on the carosel before going to see Liam.

She choose to ride on a frog

I stood close by her incase she lost grip and fell.

Lanie needed alittle fun in her life after being stuck in the hospital from the time she woke up to dinner time.

We are so proud of our big girl for handleing it all so well.

Liam had a great day,

just like he had been having all week.

Justin and I took turns holding him,

snuggling,

and playing.

Lanie enjoyed drawing him pictures

and playing with him.

After dinner Lanie and Daddy curled up to watch a movie before bedtime.

It was a great day then, and a great day today :)

Praise the Lord for that!!

New Experiences: Pool Time

Tuesday brought us really hot weather, 109.

The water in our waiting pool was perfect,

and Liam was hot.

So we decided to put Liam in the pool to cool off.

He gave me some funny looks.

He just didnt know what to think.

It was the first time Liam ever got wet while still clothed.

So our little skipper tried to get undressed.

Hanging out watching sissy swim

Liam's first time in the pool was success. I just hope he does this good in an even bigger pool of water in September when we meet with our friend from UCSF NICU.

A Year Ago Today 8/15/11

A year ago Liam was still in NICU at UCSF.

He was still on CPAP because he couldn't breathe completly on his own.

Today..

Liam is 100% off oxygen,

about 99.9% of the time.

This time last year...

Liam got his first taste of my milk...

And his first bottle

Today...

Liam gives me this look when I try to feed him

I think the look is genetic because big sister gives me that look too.

This time last year...

Liam hated his baths

And

He weighed 6lbs 7oz

Today...

He weighs 18lbs 12oz

Thats a 12lbs 5oz gain in one year.

Pretty good for a little boy who came into this world weighing a mere 2lbs 4oz.

Liam is a miracle and we know how blessed we are to have our little lamb still with us when the survival rate is only 50%.

This time last year we were fighting along side Liam. Praying he would survive and come home with us.

Today I dedicate my time taking care of my two kids and raising awareness about CDH.

You can help by Clicking here