Thursday, February 19, 2015

Feb 19, 2015 - Dear Nicholas Sparks (Guest Blog on CHERUBS)

Dear Nicholas Sparks,

I am writing to you to about one of our family's CDH stories in hopes that you and others may understand just a little what so many families go through, and why we hope you will support CHERUBS in their mission. 


Today, February 19, 2015, my daughter Alicia and I will celebrate our cherub's 5th birthday. And like so many other families we will decorate, have cupcakes, balloons, sing the Happy Birthday song, and talk about all that has happened in the last five years. Unlike many families we also have to be mindful of the rain, as the ground at the cemetery gets very mucky when it rains, and oh, don't forget, we have to get all of this done before dark as there is no lighting in that area, and when it gets dark up there, it gets VERY dark... 


We are the other side of the 50% of the CDH equation, part of the 50% that don't survive... :'(


Our story began in June of 2009. My youngest daughter had been in an on-again / off-again relationship with a boyfriend that was moving toward the off-again phase. She found out she was pregnant around the 4th of July. It was pretty easy to figure out, as she was VERY sick from very early in the pregnancy. A positive pregnancy test pretty much confirmed what we already suspected. An unplanned pregnancy can do 1 of 2 things to a shaky relationship, bring them together or push them apart. Mom and dad could not work things out and he went a different direction in his life. 


The next few months were VERY hard. Alicia already had an enlarged aorta in her heart that required extra monitoring, and she was SO sick with morning sickness that she was loosing weight and could hardly function. By 3 months along she not able to continue working. Things turned from difficult to scary at 7 weeks when she started having severe abdominal pain and we feared a miscarriage. Luckily things were ok, but we got another scare at 11 weeks when a nuchal translucency ultrasound found suspicious findings that suggested there could be a problem with the baby, and the pressure to abort was poured on hot and heavy. All Alicia ever wanted to do was be a mom and with her heart issues this might be her only chance. She was not going to give up on her child! 


They wanted her to do an amnio but she refused. She did agree to a CVS test which showed no abnormalities on the most common areas. It also showed she was carrying a boy... Alicia is half Irish from her late father, almost half Scottish from me, so her Celtic roots run deep. She wanted to give him a good strong Celtic name so she picked the name Jayden. He would need all his strength for what would come later. 


His next ultrasound on October 14th at 17 weeks would put us into a tailspin. I don't know if Alicia or I remember all the events of that day exactly, but like so many other's stories the tech took a long time... going over the same areas multiple times. We were asked to sit in the waiting area, then were taken back and were told they suspected he had CDH. They hoped the defect would be small, but any hope of that was shattered by the next ultrasound in November when they found the defect was severe. We were scared to death for what it might mean for Jayden...




They said his chance of survival was 50% if he did not need a type of heart-lung bypass machine called extra-corporeal membrane oxygenation (ECMO). Sadly because it was severe, ECMO was almost a certainty. Since OHSU did not have ECMO available (it finally became available at OHSU last year) she would have to deliver at a Legacy Emanuel.

The good news was that his heart was ok although squished a bit, and the liver was not in the chest, just his stomach and some intestines. Heart problems or liver involvement would have reduced his survival chances further. He also had cysts in his kidneys which they did not seem to think would be a big concern. Under normal conditions they may not have been, but circumstances were far from normal...


The next few months were a total rollercoaster. Alicia threw a blood clot in her lung the day after Christmas which almost cost her and Jayden's their lives, and as a result had to have injections of blood thinners twice a day for the rest of the way through the pregnancy. Have you ever tried to give your very pregnant adult child a Lovonox shot in the abdomen while trying to avoid monster size stretch marks and try not make it hurt? A mom wants to make her child feel better, not cause pain. :-(

Premature labor was a constant battle, gestational diabetes, migraines, worrying about her heart condition, pain in her back and chest from her spine and skeletal problems, and the never ending morning sickness that was relentless all the way through. I am so proud at how hard she fought to get him as close to 40 weeks as she could, to give Jayden every chance for a good start to life. 


At 36 weeks on February 18, 2010, Alicia woke to what seemed like just a little leak. Us women don't like to talk about it but when you are pregnant a baby sitting on a bladder is not your bladder's best friend. She thought that's all it was. It wasn't until our last childbirth class that evening when our very astute teacher recognized the signs of early labor and made us promised to go get it checked out. And we did. Her water was leaking and likely had been all day. We had made it far enough into the pregnancy to have ECMO available if needed. It was not optimal but it would have to do.


All through the night and into the next day she labored, and that afternoon Jayden was born. He wasn't supposed to make any noise as they planned to intubate him right away to prevent him from swallowing air, but he gave us 3 squeaks just because he was going to do things his way. I was supposed to follow him into resuscitation, but for some reason I felt I needed to stay with Alicia. I'm not sure if was divine protection or just a mother's instinct to protect her child, but it kept me from seeing what we later found out was Jayden coding, and them having a hard time getting him back. I have a medical background and have even done CPR on a baby myself before, but could I have stood there and seen my own grandchild coding? I don't know...





He did poorly that first night, and a few hours later what we feared came to pass as ECMO became his only hope for survival. 





Alicia had run into another complication from the epidural with a headache that literally lasted for a week. She missed so much of that first week, unable to stand for more than a few minutes at a time. I tried to juggle caring for Alicia, being at the NICU and work (we were too short staffed for me to use much leave). Exhaustion was a constant companion but it was so worth it as we saw Jayden improve. First his lung inflated and he kept his numbers rock solid for days, enough that he was able to come off ECMO that Friday at a week old! Now to get him to surgery...







He looked SO good that weekend! They started talking surgery by Monday but by that Sunday evening the pulmonary hypertension monster that takes so many of our warriors had reared it's ugly head. Alicia and I watched and waited as he fought so hard. He was off and then back on the oscillating ventilator. It's a type of ventilation that can help these babies, but they can't do surgery on it. Another week went by and the hope to getting surgery seemed smaller and smaller as he started to swell up. Pulmonary hypertension was pushing those strained kidneys to the breaking point. He swelled even more than he did on ECMO. For every 1 step forward he took 2 back, and by day 19 the decision had to be made to go to kidney dialysis or let him go. His awesome surgeon Dr. Bliss still had faith and so did we. On dialysis he went as the clocked ticked down...










One of the hardest things about being a parent is seeing your child hurting. Sometimes I wish I could go back to when my kids were little and all they needed was a kiss and a hug to make things better. One of those times hit me when I was walking up to the NICU and a Charlie Chaplin song popped into my head..."Smile, though your heart is aching, Smile, even though it's breaking..."

Family and friends came. We hugged. We cried. We prayed. Two days into dialysis, day 21, the nurses asked if she wanted to hold him. We knew it was risky but she hoped he would feel her there and rally. And if it was to be too much, at least her would pass in her loving arms. She decided to get him baptized, just in case. I swore I was going to be strong and brave. Yea. I was bawling all the way through...

He did GREAT through the hold! The next day had had some wet on his diaper. Most parents pray for dry diapers. We prayed they weren't dry. How weird is that, to pray for wet diapers? I know a bunch of CDH parents that have done that... 

There are connections a parent has with their child that defy explanation. No words have to be spoken, they just know. That morning Alicia woke up and could see something had changed and it was not good. She called me to come up and I could tell from her voice it was not good. He was fading and she knew it was time for him to join his grandfather in Heaven. We were so blessed to have some time to take pictures, get footprints and shower him with love. 




On March 14, 2010, Jayden grew his wings. 

He was 23 days old. :'(





The story may have ended here with Alicia left to mourn and the rest of us left to close this chapter and move on but for one thing, CHERUBS. We found CHERUBS just before Jayden was born and they were our rock, our cheerleaders, our support in ways no one else, even family, could be. When Jayden passed they mourned with us. They lifted us in the days after his passing. They understood what we had gone though. We knew we could not let Jayden's story end here. We joined CHERUBS in the battle against CDH and five years later we continue to fight, so hopefully someday soon the answers will be found to stop CDH, once and for all. We owe that to our cherubs survivors, to the memory of the lost, and to all the cherubs yet to come. 





We have held parades, made videos, worked on fundraising contests, met with families, medical staff, staff for our local senators and talked to the media, yet we would gladly have exchanged it all just to be spending this 5th birthday chasing a hyper birthday boy around Chuck E. Cheese. We need to find the answers to stop this from happening. Please help us, help all of our warriors win this battle once and for all!

Shelly Moore
CHERUBS Oregon Co-Rep

CHERUBS Parental Advisory Board (CPAB) volunteer
Grandma to CDH angel Jayden Gilbert
02/19/2010 - 03/14/2010

Saturday, February 22, 2014

Feb 19, 2014 - The Journey Home....

From Mommy & Grandma Pinwheel

Feb 19, 2014 - The Journey Home.... 
(Late entry written Feb 22, 2014)

For those who missed the first part of this story you can catch up here: Jan 24, 2014 - WOW!!!! Just WOW!!!

Going to get the balloon.

Jan 26th dawned bright and beautiful, quite a contrast to the miserable weather we had been enduring for most of January. 
Mommy & Grandma talked excitedly on the drive from Portland to Newberg where we arranged for the hand off. This was SO EXCITING! 

We actually got there early, so we killed a few minutes in the local grocery before going over to the restaurant meeting spot. We watched every truck that came in the parking lot in anticipation and it seemed like forever, but finally they arrived. Such big smiles, hugs, and pictures! 

Just after Brent gave Jayden's balloon back to Mommy!

Brent, Grandma & Mommy visiting. 
(Mommy is hugging the balloon so TIGHT!)

A stranger in the parking lot was kind 
enough to take all our picture together. :-)

The balloon before it's 9 month adventure...

And 9 months later...
Faded & well traveled, but all 
in all, 
not in too bad of shape!

Mommy brought thank you gifts & a card, and we gave them some info about CDH & Cherubs as well as pins & bracelets to hand out. 

Remember all the WOW's from the beginning of this story? One of Sandi's pastor friends KNOWS the family of CDH baby cherub Addie's who just went home from Randall a few days ago, and we got to meet Addie's mom & brother a few days before she was born, weeks before this balloon was found! Getting the shivers again yet? #SmallWorld

We didn't talk long as they had to head out to their son's house and were on a tight schedule, but those few moments were magical. I'm sure Jayden was very happy to see this! Good job Jayden for making sure Brent could see the balloon, thank you again to Brent for taking the time to check it out & bring it home, and thank you to Sandi & her friend Tami for working so hard to find out where it belonged. We hope to meet you too soon Tami!


The Balloon Comes Back to Portland

On the drive back the plan was to take the balloon to the cemetery to see Jayden, then head to Randall to complete the story of the balloon returning it's journey where it began and to maybe try & visit with baby Addie's family and another CDH cherub who we recently connected with, a baby boy named Ezrah who is still there even now & is having a tough way to go. :-(

We headed up to the cemetery, told Jayden about the meeting & showed him the balloon. I'm sure he liked it as we had a hard time getting pictures because he kept wanting to spin his pinwheels!




















Mommy takes the balloon to see Jayden!

Regrettably we did not make it to Randall as Mommy spiked a fever on the way back from Newberg and was feeling really sick. Don't let the smile in the picture fool you. She was very happy but feeling pretty miserable as well. We had to postpone the trip to Randall. CDH babies are exceptional fragile (especially their lungs) and there was no way were going to chance getting anyone sick. We headed home. It was a good thing we did. Whatever it was, it was bad, and she was down for several days. :-(

The Balloon Finally Completes it's Journey

It was a few days before Mommy could shake the bug, then schedules kept getting in the way and before we knew it Jayden's 4th birthday was here. 

Grandma took the day off work so she could observe the day with Mommy. We went up to see Jayden first. 

















Jayden was not the LEAST bit spoiled for his birthday!

After Mommy read her traditional letter to Jayden we did a single balloon release (no writing or logos, just plain blue), then sang "Happy Birthday" and spent some time tending to his & the other spots we normally help with that were pretty messy from the storm a couple days earlier. After that we headed to Randall to complete the balloon's journey.

Baby Addie had gone home earlier in the week (YEA!!) but baby 
Ezrah was still there. He had taken a worrisome turn a day or so before so although we really wanted to catch up with them, we totally understood when they were not up for visitors. PLEASE keep praying for him!

We did have some stuff to drop off for him and the security guard was kind enough to promise to get it up to them. After leaving the gifts, we took the balloon out to the front of the hospital, to where it all began... After the 175 mile journey, the balloon had returned!




















The journey home is now complete. :-)

(Post Script) 
The 3rd Annual Parade of Cherubs is being planned for April 19, 2014. We know it is Easter weekend but we still think it has the potential to be the biggest ever! 

To learn more about the 2014 International Day of CDH Awareness in Portland and around the world, check out all the news over the next few weeks at: www.cdhawarenessday.org/ 

Friday, January 24, 2014

Jan 24, 2014 - WOW!!!! Just WOW!!!

(Mommy Alicia & Grandma Shelly)

Sometimes things happen we can't explain. And sometimes they happen at just the right time. We think today is one of those days....

It is coming up on 4 years since Jayden was born & passed into Heaven not long after that. Having just come through the holidays (which are always emotional), we approach Valentine's Day (another emotional point) and immediately after that his birth date & angelversary. 

After 4 years the pain is still deep. Perhaps it always will be. We busy ourselves with activities, responsibilities and distractions, but when it's quiet and it's just ourselves, the pain is still there. This last couple of weeks have seemed to reinforce that pain. It comes in waves, and lately those waves have seemed particularly high, so it seems just the time Alicia's "Lil' Man" would pull something that we feel is nothing other than miraculous!

Grandma had a particularly bad day yesterday (Thursday) and Alicia has been having a rough week with her ongoing medical issues, so by last night we were pretty wiped out, physically & emotionally. Grandma checked her email one more time before bed and found an email that changed everything. Back to that in a minute....

Last year we helped plan the CHERUBS 2nd annual Parade of Cherubs in Portland, Oregon at Legacy Emanuel / Randall Children's Hospital. During that time we met with other CDH families, held an Information Fair, and gathered with our Cherub survivors and fellow angel families, paraded around the hospital grounds to raise CDH awareness.

Here is the video of the event:

2nd Annual "Parade of Cherubs" in Portland, Oregon 
April 19, 2013




If you watch in the last few frames, we "sent" balloons to our Cherubs who were lost to CDH. Each angel family like ours got their own balloon to label and the rest went to survivors to write on (although we can't remember if a couple of the survivors had to share putting their names on a balloon or two). 

Here is a picture of the one Alicia did for Jayden...
























Remember, this was April 19th, 2013... :-)

>>> Fast forward to last night (Thursday)...

The email that turned our frown into smiles, & kept it there all day today...

Grandma was very tired, but went to check her email 1 more time before bed. In her inbox was the usual, except for 1 item, a comment notification from YouTube on Jayden's memorial video from 3 years ago. 














Shock, disbelief, amazement! Immediately grandma went to show it to Alicia & they were in shock together! WOW! Just WOW!!! Of COURSE Mommy would like it back!

Grandma couldn't reply on mobile & had to wait until morning, and as soon as were able to get online we replied, and were amazed again!

We'd pretty much figured out by then it had to be the balloon from the parade, but how far had it gone??? Neither had ever heard of Post, Oregon, so we had to look it up on the map... 174 miles (give or take) from Portland! There was a steady wind that day, so it likely hit an updraft pretty quickly & sailed on an upper air current. 



When we finally started talking to Sandy we found out her husband was in the middle of nowhere hunting, in a place where normally no one would go, so for it to be there & cross Brent's path... well apparently powers beyond us decided it was time for it to be found! She said it is also in remarkably good shape. It was her & her friend Tami who searched the web in hopes of finding who it belonged too. THANK YOU to all 3 of them!!

But the story doesn't end here. All this is transpiring on Jayden's great-grandpa's birthday. When we called to wish him Happy Birthday & told them the story they were amazed too!

And even more! Brent, Sandy's husband SHARES the same birth date as Jayden...and one of Sandy's children was born in the same hospital one of Alicia's siblings were in Billings, MT, many years before... Getting the shivers yet?!? 

#TwilghtZoneMusicPlays


We have set up a time & will bring the balloon home this weekend, and if all goes well, hopefully get to visit this weekend with 2 families at Randall who's babies are fighting the same battle Jayden fought so bravely almost 4 years ago... <3

Jayden, in a sense, is coming home to Mommy... :-)

Looking forward to the rest of the weekend!

(P.S.) If you are an Oregon or SW Washington CDH family and have suggestions for this year's CDH Awareness events for April, please let us know as we are meeting on Sunday with our fellow planners to firm things up. 

If you are a CDH family in other areas & want to see what is going on in your area (and this is worldwide) keep checking back with CHERUBS!

CHERUBS Main page: http://www.cdhsupport.org

CHERUBS Facebook Page: http://www.facebook.com/cdhsupport




Tuesday, August 13, 2013

Aug 13, 2013 - August 19th is coming up... Project Heal - Day of Hope

(From Grandma Pinwheel)

August 19th holds a very important significance to Alicia & I, as it has been a milestone day for us. 

On August 19, 2010, Jayden would have been exactly 6 months old... 

In 2011, 1-1/2 years, in 2012, 2-1/2 years.

And on August 19th, 2013, he would have been 3-1/2...  :'(

Alicia lost her son. I lost a grandson. It is the reality we must live with for the rest of our days.

The pain is less sharp as time goes on, but we will always carry it with us. Jayden is no longer here. Nothing we can do will change that.

We have found that reaching out to other grieving families lets us know we are not alone, and lets them know they are not alone. 

We can understand each other in ways others who have not been down this road can. 

We have reached out to others, and they have responded. We have paid his love forward & gotten so much in return. It will never fill the empty hole left in our hearts by his absence, but hopefully his spirit will live on through us & through them and in doing so, let others just starting this journey know, there is hope.

There are times that memories and emotions surface, bringing the experience back, but the experience is shaping us and giving us and those who walk this painful journey hope that we can find some sort of healing. And that is what the "Carly Marie - Project Heal" is all about. This will be our 3rd year participating. Every year the emotions are different, some tough and some comforting... and we are grateful for all of them. 

Join us & others around the world next week as we stand together for the "Day of Hope". #august19thdayofhope



DayofHope





Wednesday, July 17, 2013

July 17, 2013 - Another New Angel Now Lies Near Jayden... :'(

(From Grandma's Facebook Page)

Up spending time with Jayden in the children's section, asking him to say some prayers for some fighting Cherubs, and saw he has a new playmate two rows over...  

Prayers for their family...

Tuesday, July 16, 2013

July 16, 2013 - Jayden, Please Be With a CDH Baby and her Mommy Today...

(From Grandma Pinwheel)

Every day 144 babies are born with CDH in the world, 1 baby every 10 minutes, and every 20 minutes a baby dies...

Very soon, another CDH baby will make her grand entrance.

She will fight hard, but in the end will she go home to her family, or home to eternity?

Please sweet Jayden, ask God to give her all the strength she needs to win this fight, as we know you have plenty of playmates already!

Fight little Cherub warrior! Fight!!!

Wednesday, August 17, 2011

Aug 2011 - July 16, 2013 - UNDER CONSTRUCTION!

We are slowly getting these entries added in. 

Please be patient & check back often for updates!

Thanks!
Alicia & Shelly

Thursday, August 11, 2011

August 11, 2011 - From a CDH family friend

Tagged to Grandma's Facebook page

This has been such a terrible month for CHERUBS. Babies Parker, Conley, Grace, Madelyn, Jeremy, Mattiaus, Adriel, Miles and now Hector, may you rest in peace with all the breaths you need and the wings to fly as fast as you want. Please vote...we only have a short time left and desperately need the support of our family and friends.  :'(

Sunday, July 31, 2011

July 31, 2011 - Decking Out My Car in Memory Jayden

From Mommy's Facebook Page

It's my little family on my new car.















I still want more CDH stuff on my car LOL.





















Tuesday, July 19, 2011

July 19, 2011 - 17 Months Old...

From Mommy's Facebook Page

Going to see my Jayden now. Today is his 17 month birthday. 

I can't believe it's been 17 months since we welcomed my perfect baby into this world. I don't know how I will handle next month as then he will be a year and a half old. 

OH MY JAYDEN, HOW I MISS YOU SO!
~~~~~~~~~~~~~~~~~~~~~



















HAPPY 17 Month BIRTHDAY my Lil' Man! 
MOMMY MISSES YOU SO MUCH! 


Thursday, July 14, 2011

July 14, 2011 - 16 months Since Jayden Grew His Wings...

From Mommy's Facebook Page





















Well he is a boy. 
You know what they say about boys and cars. Lol. 

Monday, July 4, 2011

July 4, 2011 - Second 4th of July for Jayden in Heaven...

From Mommy's Facebook Page

This may be my 2nd 4th without my son Jayden, but to me it is still as painful as the 1st! 

CDH took my SON & ANY chance at a 1st, let alone ANY 4th of July with HIM & ME!! I WILL NEVER FORGIVE GOD FOR TAKING THAT AND HIM AWAY FROM ME!!!! 

Sunday, June 19, 2011

June 19, 2011 - Please VOTE!

From Mommy's Facebook Page

June 19, 2011

There are moments in life when you wish you could bring someone down from heaven... and spend the day with them just one more time, kiss them goodbye or hear their voice again. 

~~~~~~~~~~~~~~~~~~~~~~

16 Months ago today I gave birth to the most BEAUTIFUL baby boy ever! And just 23 DAYS later I had to say goodbye with him in my arms! 

NO mom OR dad should have to say goodbye to their baby. 

PLEASE go VOTE and help me save other moms and dads from having to say goodbye like I had to do. (Remember this could be YOUR baby too!!!!!!!)

Please help me give my son LOTS of votes in his name and help me show him he will never be forgotten or left behind! Lets help ROCK the votes and get the grand prize so we can do the research and TRULY help these babes!









Monday, June 6, 2011

June 6, 2011 - AMAZING women!!

From Grandma's Facebook Page

AMAZING women... 

One has been in labor for 25 hours and will be having a c-section to deliver her baby who will be born with CDH. 

The other just lost her daughter to CDH 1 month after she was born. 

The amazing part to this is that through being in labor and grieving, they are pushing hard for votes for CHERUBS! 

It's people with that kind of dedication that can help win funds for CDH research!

Thursday, June 2, 2011

June 2, 2011 - Another Cherub Lost

From Grandma's Facebook Page

Changing my profile picture in memory of baby Penelope who lost her battle against CDH today. Fly high little angel! :'(