This is Baby Bella.

She is 4.5lbs and 16 inches long and was born yesterday.

has trisomy 18 and CDH, the same as Addison had.

Bella's parents are gearing up for a fight to get Bella the best care. It seems as though the hospital is using her T-18 as an excuse to not give Bella top of the line care. Her parents, Jinny and Tom are standing guard by Bella. The Dr is trying to coax them to turn off life support. Due to the hernia she needs a vent to breathe.
The whole family needs all our support and prayers.

http://www.heartstringssupport.org/quotes/

Reflection, Contemplation, Hope
Heartstrings
By Judi Walker

A mother's love knows no bounds,
No stronger bond can be found,
Mother and child are connected from the start,
There is a string from heart to heart.

Nothing can break this heartstring,
No matter what the future may bring,
A mother loves her child forever,
The heartstrings hold them together.

It is a love of the sweetest kind,
There is nothing more beautiful you will ever find,
And even death cannot break this bond,
It knows no earthly ties, it is here and beyond.

We are connected to our children forever by this love,
Even when God calls them to this home above,
Nothing can change this love, not time, nor words or even
Death bitter sting,
We are connected forever by the "HEARTSTRINGS"

I have been working on this post for a while now....

Addison Kathelene Reynolds " Our Special Daughter"

On June 2nd, 2010 the doctor told us our baby had CDH. That next Tuesday, June 8th we traveled to Utah and and had a ultra sound that confirmed the CDH. We were told we needed to have a Amino and a MRI done. We were hopeful nothing else would be wrong. Some babies have surgery and survive the surgery.




With every morning, brought the realness of our baby's condition, we were consumed with it and the fact there was nothing we could do except wait.


We researched the Internet and found out everything that we could about CDH. We learned the severeness of these birth defect but also that it could be treated and our baby could survive to live a long, happy and full life.



On the 25th of June we arrived at St Mark's in Salt Lake for our appointment. First the doctor did the amino then we went for the MRI. As soon as the needle went in for the amino, Addison knew it and wasn't happy. Then we were taken to do the MRI, needless to say Addison was still very upset and did not quit moving and so after a hour and half, the tech came and told us it was one of the worst she had to do, since Addison wouldn't hold still. So we left not feeling so great with what had taken place and went home feeling anxious, but we still were hopeful.

We worried about anything and everything, and yes even worried about Downs Syndrome, but we are very blessed that God already has given my family, my sweet little cousin LUKE, and I knew my Aunt Kandy would be there to help with every question and worry that we would have. Ryan and I are very blessed with our families and friends, so our baby no matter what, would have (AND ALREADY DOES) have tons of love, and we could handle anything GOD was to present to us and we would together deal with it as best as we could. But hard to believe that I was just wishing "if only your child could have had a less serious chromosome disorder such as Trisomy 21, it would not be described as “lethal Trisomy”.

But we never expected to get this call......

Wednesday, June 30th, I got a call (I was at work) from a different Utah doctor (the boss of the doctor I had been seeing who was out of the office)He explained the results were conclusive and our baby had Trisomy 18 (Edwards’s syndrome). He then asked if I knew what that was, I said yes and after that I don't remember what all he said, I just know he just keep talking. Then he stop and said he was so sorry to have to be giving me this news and asked if I was ok. I said, I don't know. Honestly I didn't, all I knew was I needed my husband, and that was what I said was I need to talk to my husband. He said he would set up a meeting with the team of doctors, when would I like too? I said I had to talk to my husband.....

I had read about the associations with 2 vessel umbilical cord, and trisomy 18 was one I had read about. So I knew that it was not "Compatible with Life", that's how they put it.


I just sat there, not knowing what to do. Ryan was working in Swan Valley, and I didn't want to call him and have him have to drive home with this news.... I cried. I was all alone at work, thank goodness and just sat there and cried. Then I decided I had to leave. I did call Ryan.


Everything was really a blur from there.



I do thank God that each time we got "bad new" that my children were gone and that Ryan and I had time to breath, talk, and cry.

That night I googled Triosmy 18 and CDH and found a story about a little boy with both CDH and Trisomy 18. I read it. But for some reason I just didn't think a lot about it, this wasn't us, the doctors would never say anything like this????......

The next day I would be reminded of my ignorance. And that I didn't even tell Ryan about reading the story, not until the next day.

I got a call saying that we could just have the consult done at EIRMC so we didn't have to travel to Utah.


So I went and met with our new Idaho Falls Doctor, Dr. Leavitt, and told him about the consult and that the Utah doctors said he didn't need to come, but he said he would anyway. He told me that what ever they told me was just a commendation and We only needed to do what we waned, I really didn't understand what he meant, but I would soon....



So on Friday July 2nd we went to EIRMC .



We were not at all ready for the news we were about to receive.

Never in a million years would any parent believe what we were told next.


A different Utah doctor told us that there was nothing that could be done or would be done for our baby Addison, that she would die.



****Trisomy 18, is a condition which is caused by a chromosomal defect, its were the baby receives 3 - of the 18 chromosome. It occurs in about 1 out of every 3000 live births. With Trisomy 18 the extra chromosome occurs in every cell in the baby's body. And is lethal. And even if she was born alive that she would die soon afterwards as it is in every cell. There is risk she could arrive early and or be stillborn as many babies with T18 are. most of what I remember is that with Triosmy 18 its just not compatible with life, its lethal.




Then the doctor said we could deliver her now, if we wanted to.

What?

Why did he say that?

What?

We were so shocked, I really could not speak or breathe. I can't start to tell you very emotion that was consuming my body, heart and soul. I was mad, hurt,

destroyed, crushed.


Then I heard Ryan ask if we wanted to go full term if they would help with the surgery for the CDH, and then the doctor said no. What? We both were not believing what we were hearing.

We went home devastated and so confused.

How was this happening? How could doctors say these things?



So many questions:

So would we now just be delivering at our local hospital, with our OB?

What now?

Where do we go from here?

Who if anyone will help us?

One of the hardest things to know that doctor would write off your unborn child.


Questions after questions ran through our heads.

Deliver now?

What?

Why?

Is this necessary?

Is there a threat to my health?


I was so glad that Ryan asked all the right questions, I was just there. Numb, maybe? In total shock, yes I was.

Brokenhearted. Crushed in spirit.

Yes that was the best way to describe the state of my, OUR souls.

I know I have wondered if I will feel good, NORMAL, again.

My husband amazes me, he is my rock. We left and he drove us home safe.

We talked. We cried. We prayed. We talked more and cried so much more. Than I showed Ryan the story about the little boy.


The one thing that I read that we thought was really important was to we needed time to think and talk.
So we left town.
We drove and talked and drove and talked.
It was good. Good for us and our souls.
We did decided that we would be carrying full term, unless God had a different plan for us.
We scheduled a appointment with our "new" doctor, to see if he would still be our OB and if he would be help us to carry Addison to full term.


Wednesday July 7th was a "good day" for us. Dr. Leavitt was totally on board and schedule an appointment with the a Idaho Falls Neonatologist for the next day.

The compassion that we have received from our doctor and the neonatologist, gave us hope back. They will help us, they will help her. Addison may not live long but atleast now we might have a chance to met and love on our daughter.


It is this hope we needed to help us to get through each day. We also know with all the support and prayers of others, will help us, our family get through this.
***********************************************************************************
I knew my baby’s life would never be like my other children. Now instead of planning baby showers and her homecoming, we were deciding where we wanted to bury our baby daughter.

And I would soon feel pressure to make such awful decisions in-case she arrived early as predicted.

Never before had it even occurred to me that anyone would have to ever carried their unborn child for months with such a heavy burden.

I even knew family members who had lost babies and still it had not registered with me that anyone could know so far in advance and go through months of anxious waiting and hoping.

I struggled so much that no-one could help. And we had to talk about that it would only cause her unnecessary suffering to artificially prolong her life by attaching her to machines.

Days went by and we started to just go through the motions.
Trying our best to act as normally as we could.
But we still wondered what is normal?
It was like everyone in the world was pregnant. But I was the only one whose baby was going to die. I wondered what I had done to upset God so much. We both did. We know that we didn't do anything.

I know that it is not a lot of fun to be with someone who is sad.

We have our good days and we have our bad days.

Right now there just has been a whole hell of alot of bad days.

Just going grocery shopping became difficult for me.

EXAMPLE:

Right when my day seems NORMAL, the check out girl, or a person I haven't seen for ever, or the neighbor person, come up and start with the questions, just normal pregnant questions, but when you are not having a normal pregnancies, It JUST SUCKS to be asked all those happy normal questions.

Or when someone says "Oh your SO LUCKY to be having a girl! (I wont even try to explain how damn hard that WAS to hear and then to top that off I couldn't get away fast enough and lost my car keys......That day, I wont forget.) Please stop, I know she didn't mean any harm, I KNOW. But please realize it hurt, it hurt bad.

Lets face it leaving my damn house became hard on me. My sister tries to go with me, if Ryan can't. I don't think you can even begin to realize how hard it is. Just to leave our house and go into public, unless you have been in our shoes, my shoes.

My work has tried to help everyday. The check on me when I don't make it to work. They always try and make me laugh and bring my spirit up. Work for the most part is easy to go to, once I make it there.

The one thing that is hard to hear over and over again from people (Yes I also know that they are just trying to be helpful...) is:

Everything happens for a reason.

God has a plan.

It will all work out in the end.

Maybe it was for the better.

And please don't throw a bible verse at me.

(If you know me, really know me, you know.........)

And we do know that no one knows what to say.

We know that its hard, for everyone, not just us.

But please remember it is happening to US.

Just be there for us. Call and check on us. Just let us know that you are there if we need anything. You don't always have to say anything.

We do hurt, alot. It hurts me to watch my family hurt. My husband and both of my kids.

Life is hard. My life has been hard. I do know that in time, we will, all of us, will heal. We will, someday be ok.

WE DO want you ALL to know it is because of you, that we will all make it. Each and everyone that has came and helped in anyway. Called just to see how we are. All the food made for us. For those who have just listen. That loves on us. FOR ALL THE LOVE AND PRAYERS. We know God does love the brokenhearted. He is walking with us in this journey. He is the hope and the healing. No one know what the future will bring.

So embrace LIFE, now. Today. Tomorrow. Everyday.

And God gave us Addison because Ryan and I are strong and together we would get through this.

Last few months as we approached the birth of this our special daughter, have been very hard on us all. But at the same time such a blessing. As long as Addison was in me she was safe. I didn’t want her to be born, atleast not yet. Every day I carried Addison was a blessing. Every move and kick was a wonderful. So many people helped us through this journey. To us our baby girl was special and we all already loved her so much.

LIFE IS full of so many unexpected, life changing events.

Now all I am left with is wondering what will happen when she is born.

How long would we have with our baby girl.

I know this in God's hands.

So I will continue to pray and I know you all will too.

Friday Ryan and I traveled to Salt Lake UT, to St. Mark's Hospital for a Amino and then for a MRI.
It didn't go so great.
The Amino was first. As soon as the doctor stuck the needle in, little Miss Addison got MAD, and I mean MAD.
It is done with use of an ultra sound so we could see everything. She started kicking and didn't stop.
As soon as we were done with the Amino we went start in for the MRI. Not a good thing. Addison was already worked up and would not stop moving, kicking, doing flips. So for an 1 1/2 they tried to take pictures but only got 70 in that time. They said it was one of the worse ultra sounds that they had "tried" to do. So some time this week we may have to go back?.
Results will take up to 10 days, who knows with the 4 of July happening when we will hear?

Just want to say thank you for all the prays!

And phone calls.

We love everyone.

Wanted to share this with all of you. We are participating in this research to help found out what causes CDH. Julia Wynn has also been very helpful with questions. You can clink on the links to read more.

http://globalcdh.org/Genetics_Research.html
In the News: DHREAMS

Global CDH has partnered with the Columbia University Medical Center and their CDH Genetic Research Analyses Team in NYC. (More)

Global CDH has partnered with the Clinical Genetics Department at Columbia University Medical Center to assist in the DHREAMS initiative.
DHREAMS is a national NIH funded study of CDH centered at Columbia University Medical Center.
The scientific goal of the DHREAMS study at Columbia University Medical Center is to develop a better understanding of the causes of CDH. This National Institute of Health (NIH)-funded research team is composed of health care providers and researchers across the country, coordinated at Columbia University Medical Center.
DHREAMS is designed to identify specific alterations in genes that contribute to CDH through genetic analysis of biological samples from children with CDH and their family members. The investigators hope that the information gained through our study will lead to a better understanding of the cause of CDH which will in turn lead to significant advances in the diagnosis, prognosis, prevention, and treatment of this disease.
Multiple medical centers across the country are enrolling individuals. Please contact our research coordinator, Julia Wynn at jw2500@columbia.edu or (212) 305-6987 for more information about the study and how to participate. When doing so, please mention Global CDH in the e-mail.

To visit the DHREAMS official website please visit www.cdhgenetics.com

From High Mortality to High Survival
by: Charles J.H. Stolar, MD,
Chief, Division of Pediatric Surgery
Morgan Stanley Children's Hospital

Paired with the clinical program is a research program aimed at understanding the causes of CDH. With new, higher resolution genomic technology now available, Wendy Chung, MD, PhD, Director of Clinical Genetics, Columbia University College of Physicians and Surgeons, is investigating the genetic mutations involved in this condition. Using the highly advanced methods that help predict prognoses in cancer patients, Dr. Chung is working to detect abnormalities in chromosomes, or even parts of chromosomes, that may be responsible for CDH.
"By determining the genetic abnormalities associated with CDH, we hope to be able to give better answers to the questions patients ask, such as which children will have problems in addition to the CDH, and will this ever happen again in our family?" Dr. Chung says. The ability to detect wayward bits of chromosomes is still in the research phase, and may become clinically available in two to three years, according to Dr. Chung. "By developing the data to make this technology useful, the potential is there to use it for prenatal testing as well as after birth."
http://cdhgenetics.com/

http://globalcdh.org/CDH_Blogs.html Here are some blogs of CDH babies.


CDH Facts:
"Less than two decades ago, an infant born with CDH had a 50-50 chance of survival."
(1)
“Overall, worldwide survival of infants born with diaphragmatic hernia has increased from about 50 percent to 68 percent in the last 20 years.”
(2)
"In CDH, most (85%) lesions are left sided, 13% are right-sided, and 2% bilateral."
(3)
"Diaphragmatic hernia is caused by a failure of the diaphragm to close or to form, for unknown reasons, at approximately eight weeks’ gestation. Most commonly seen on the left side of the body, the defect may also occur on the right side or in the central portion of the diaphragm. The opening left in the diaphragm allows abdominal organs to herniate into the chest cavity, leading to pulmonary hyperplasia. Complications arise when the lungs fail to develop and the exchange of gases necessary for survival is restricted."
(4)
“The lungs of infants with CDH are developmentally retarded, with fewer alveoli, thickened alveolar walls, increased interstitial tissue, markedly diminished alveolar air space and gas-exchange surface area."
(5)
Combining all hernia types, CDH occurs 80-90% of the time on the left side, 10-20% on the right side, and less than 5% of the time bilaterally.
Infants with CDH often present in the neonatal period with severe respiratory distress; pulmonary hypoplasia is common.
Newborns with CDH are intubated immediately to avoid bag-mask ventilation and inflation of the bowel that has herniated into the chest.
Almost all individuals with CDH have some degree of pulmonary hypoplasia. Many infants require oxygen supplementation and diuretics following surgical correction of CDH.
The male:female ratio is reported as 1.25 ,the recurrence risk is estimated at approximately 2%, the median overall mortality rate is 58% for babies diagnosed in utero, 48% if born alive, and 33% postoperatively.
"Failure to thrive" with growth parameters less than the third centile of normal is common among infants with more significant pulmonary hypoplasia and/or a more prolonged hospitalization following surgical repair of CDH.
With the proper medical care, resources, emotional support, and the strength which these babies possess...they will overcome their struggle to stay alive and provide joy and smiles to all...

Update on James Melissa Beamon's son!

This is what she wrote:

The start of another wonderful week, Lord willing. James is doing very good. Is still on the vent but down to 23%O2 (almost room air), and the vent rate at 25. WOOHOO!!!! Keep it up my baby. You are so strong and I am so proud. Thank you Jesus. Let James continue to get better!!! I give you all the praises!


On another note:

Please keep the family of newborn cherub Brielle S. in your thoughts and prayers. After 17 days fighting CDH, Brielle earned her wings on June 25th in the loving arms of her mom.

Melissa Beamon's son name is James. Here is a little about them.

I gave birth to a baby boy...James on January 6, 2010.
He was diagnosed at 35weeks gestation with a RCDH and was born 36 weeks. He wasn't expected to live thru the night, however he is a fighter and has held on. He truly is our little miracle. He was on the ECMO machine for 12 days, had corrective surgery day 9 of life and then just had a trache 2 weeks ago. He is 5 months old and is still in the NICU.

Updates (June 22)

James had to go back on the vent lastnight. Prayers please!

Today (June 23rd) she wrote:

James is getting better. He had an infection brewing in his trache. They started antibiotics and he is now back down to 35% 02. Still on vent, but breathing A LOT easier! Thank y'all from the bottom of my heart for your thoughts and prayers. He is supposed to have surgery tomorrow to have a G-J Tube (feeding tube). Keep your prayers coming for him please.


Please keep her and her 2 sons, James and 3yr old Billy, in your prayers.

Another site to vote for on facebook is:

Please go vote for Real Hope for CDH, Olivia Reames, and The Parker Reese Foundation.
http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation?src=charity-details-wall-post-self&ref=mf

http://cdhsupport.blogspot.com/

Prayers & Quotes for June 17, 2010
Prayers & Quotes for June 17, 2010 If you have a prayer request for a cherub or a family member of a cherub, you can send it to prayers@cdhsupport.org. If you have a quote you would like to share with us, please send it to prayers@cdhsupport.org. Please keep the following in your thoughts and prayers:
Newborn cherub Isabella E. arrived 6/11. She has been put on ECMO to give her body time to rest. She has had a surgery to release some abdominal pressure, but is still very critical.
Please pray for strength for Isabella and her family.
Newborn cherub Brielle S. arrived 6/9 by the EXIT to ECMO procedure and is very critical. Please pray for continued improvement for Brielle and strength for her family during this difficult time.

Newborn cherub Noah A. was born 5/25. He has had his CDH repair and continues to make small progress in the right direction. Please pray for his continued healing. Newborn cherub Micah P. is still in the NICU. Please pray for his healing and continued strength. He recently had a trach put in, but now has developed pneumonia.

Teenager cherub Logan W., has upcoming pulmonology and cardiology appointments. His physical did not go well and the ped. is concerned with his breathing(retractions) and arrhythmias.
Cherub Adam H. will be starting OT in August...please say a prayer that therapy will help him in this area. Aaron H., brother to cherub Adam H., has dealt with horrible reflux type pain since he was born. Doctors have not found the reason or a solution to the reflux. Please pray that his mom can find what is causing Aaron's pain and throwing up.

Cherub Quinn P. was born 4/9 and is now home and doing very well!

Mom to angel cherub Kasey C., gave birth to a healthy baby girl 6/9! Brooklyn weighed 8lbs.9oz. and was 19 inches long. Megan L.,

mom to cherub John L., is expecting a healthy baby boy!!

Cherub Braden H. continues to have ear infections, one after another. Please pray his upcoming ENT appointment goes well and he gets some relieve from the ear infections. Please pray the nurses at UCSF do not strike.
The hospital got a court order to stop it and it is to be reviewed 6/18.
Several CDH babies are set to arrive this month there at UCSF. Expecting parents to cherub

Addison R. will be having further tests done next week on Addison (MRI and an amino), please pray for strength for this little cherub and her family.

To all our families and friends that are fighting against the flu, colds, sickness…may you feel better soon and have no complications. Cherubs on Their Way:

Cherub Anya L., will be induced this month
Cherub Elijah V., due 7/12
Cherub Josiah B., due 7/13
Cherub Niklas E., due 7/18
Cherub Whitney M, due 7/18
Cherub Shelbi R ., due 7/30
Cherub Finley D., due 8/13
Cherub Christopher F., due 9/3
Cherub Savannah Q., due 9/4
Cherub Airynn E., due 9/12
Cherub baby boy M., due 9/25
Cherub Addison R., due 9/25
Cherub Isaac I., due 10/14
Cherub Abel B., due 10/28
Cherub Adalyn T., due 7/31
Cherub Osmund K., due 7/22
Cherub Heath F., due 9/3
Cherub Kaiya W., due 6/22
Cherub Abigail W., due 6/23
Cherub Arwyn J., due 7/7
Cherub Alice H., due 7/27
Cherub Adalyn T., due 7/31

All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead. Newly Grieving Families:
Newborn cherub Sam R. arrived 3/16 and earned his wings 3/16.
Please keep this family in your prayers during this difficult time.

Newborn cherub Kadyn B. arrived 4/27 and earned his wings 4/28. Please pray for peace and understanding for this family.

Newborn cherub Owen G. earned his wings 6/11, after a two month fight against CDH. Please pray for strength and comfort for this family.

To all families affected by CDH and the loss of your precious child, may you find peace and comfort and know you are never alone, for so many people care about you.

Today’s Quotes:
"Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams." -Ashley Smith

"The only real failure in life is the failure to try." -Author unknown

"We are all faced with a series of great opportunities brilliantly disguised as impossible situations." -Charles R. Swindoll "Learn from yesterday, live for today, hope for tomorrow." -Albert Einstein


If you haven't read this BLOG http://cdhsupport.blogspot.com/ , please take time and do and http://www.cdhsupport.org/ They have already done alot for RYAN AND I.
On my birthday I received a tote bag. It had so many WONDERFUL things, from other parents who have been in our shoes. Without CHERUBS and their websites and parents we would not have the info that we do and probably would still fill lost.

If you have a facebook, please vote for this charity CHERUBS - Congenital Diaphragmatic Hernia (CDH) at http://www.facebook.com/apxalarm?v=app_121215224555298


Thank you all for your prayers and cards and phone calls. We love each and everyone of you.
It means so much that you all keep us in your thoughts!

We got a sweet card letting us know that Ryan's little niece Brynley, has been praying ever since she was told we were having a baby. I know that all of Addison's cousins are praying and can't wait to met her! Thank you ALL!