Tuesday, June 29, 2010

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.

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://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."
Overall, worldwide survival of infants born with diaphragmatic hernia has increased from about 50 percent to 68 percent in the last 20 years.”
"In CDH, most (85%) lesions are left sided, 13% are right-sided, and 2% bilateral."
"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."
“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."
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...

Sunday, June 27, 2010

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.

Moore Car Show

Ryan and Colby and KarLee and I headed off for some relaxing family time!
We went to a car show in Moore, Idaho (which is were my mother live growing up!)
And we got to go on a Poker Run.
Ryan got to drive my dad's Mustang Saleen, and YES he enjoyed driving it!!
We didn't win but had fun!!
We all got to check out all the cool cars and eat some food and soaked up the sun(my shoulders are hurting a little today... we all got some SUN!)

After the car show we headed back to Mackay, to see Grandma Karen
and Grandma and Grandpa McKelvey.
It was a wonderful and much needed day!
Loved visited with all!!!

Wednesday, June 23, 2010

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.


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!

Friday, June 18, 2010

Yesterday I got very sad news, 2 of my best friends' fathers passed away.

I have know "Papa Tom" since, well since I was born. He was friends with my dad Daisy. So of course his daughter and I would have get in trouble together too, just at as much as are fathers did! Shani always liked to get me in trouble rather it was at church or Lava.
One of the best memories is when we were doing a benefit BBQ and my dad Daisy and Shani's dad Tom and April's dad Kenny and Michelle's dad Lindon were all together laughing and cooking for us girls, and someone was amazed to realize that all of our dads were friends and no wonder were too!!
I am very proud to have known TOM. I will miss his voice (full of BS) and will always be there for his family!

Thomas Edward Bartausky, 60

Thomas Edward Bartausky, 60, of Blackfoot passed away Tuesday, June 15, 2010, at his home. A memorial service will be held at 1 p.m. on Monday, June 21, 2010, at Hawker Funeral Home, 132 South Shilling Avenue in Blackfoot. Family will meet with friends and relatives for one hour prior to services at the funeral home. Condolences may be sent to the family at condolences@hawkerfuneralhome.com

I still remember when the Aikens moved to Blackfoot. My mother drove school bus and told us we need to be friends with the "new girl", (months later would regret that she ever wanted us to be friends Shelley and my sister and I have been friends ever since that day, oh and did we get in some trouble! I think I was a freshman in high school, my sister and Shelley were sophomores at the time.
Shelley's dad loved his girls very much and only ever wanted the best for them. He was a proud dad and grandpa!! Jordon is one of his grandson's who is also my son Colby's best friend, ( I have to say they don't get in trouble together, they keep each other out of trouble, thank goodness for Shelley and I). Bob will be missed by all.

Robert W. Aiken, 57

Robert W. Aiken, 57, of Blackfoot passed away Wednesday, June 16, 2010, at Eastern Idaho Regional Medical Center in Idaho Falls. He was born Nov. 26, 1952, in New Bedford, Mass., the son of Warren V. and Dorothy Fell Aiken. Robert attended schools in Fairhaven, Mass., through the 12th grade. He served in the Navy for four years. On Feb. 25, 1973, he married Gloria Ann Pulley in San Diego, Calif. He volunteered for the Red Cross and enjoyed fishing, bird hunting, woodworking, golfing, gardening and swimming with his dog. Robert worked for National Steel in shipbuilding, 19 years at Basic American and had also driven truck as a delivery man for United Liquors. He is survived by his wife, Gloria of Blackfoot; children, Shelley (James) Parris of Blackfoot, Rebecca (David) Park of Butte, Mont.; four grandchildren, Jordan and Austin Parris of Blackfoot, Natashia and Nathaniel Park of Butte, Mont., and sister, Sue Ellen Aiken of Mattapoisett, Mass. He was preceded in death by his parents. A memorial service will be held at 11 a.m. Tuesday, June 22, 2010, at Hawker Funeral Home, 132 S. Shilling Ave. Condolences may be sent to condolences@hawkerfuneralhome.com

Thursday, June 17, 2010

Just wanted to share this with you all, because of the families who have wrote about there journeys, we have been able to understand a little more about CDH. I just want to say thank you to for all the support from CHERUBS and these parents, all of you, THANK YOU.

This is about the little boy I had talked about, IAN. His mother is a mother who has been real help. Thank you Tracy.

I am a mom of a LCDH survivor! Ian was born (4 weeks early) on 4/3/04 and is now one happy, happy little boy. Ian's CDH was not diagnosed until birth and he was life flighted to Primary Children's Medical Center in Salt Lake City, Utah, where he spent 53 1/2 days in the NICU, 7 days on ECMO, and 29 days on a vent (23 days were an oscillating vent), and 546 days on oxygen. He endured feeding difficulties, acid reflux, developmental delays, and pulmonary hypertension. He has now outgrown these symptoms and now has heart related issues due to being on ECMO. Ian also had surgery to fix his left and right inguinal hernias and a undescended left testicle during his NICU stay. I am the Wyoming State Rep. for CHERUBS and I also help co-rep. Colorado and Utah (The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support), www. cdhsupport.org. You can also see Ian's journey in pictures at: http://www.onetruemedia.com/shared?p=7d4ff7c5ae6b604f781db4&skin_id=601&utm_source=otm&utm_medium=text_url

Take time to clink on the link. And the other blogs on my page and read about some CDH babies.

Wednesday, June 16, 2010


Colby will be riding (saddle bronc) tonight at 7pm and tomorrow at 9:30 am at Pocatello!
Come watch!!

He had his cutting Monday. He didn't do as well as he would have liked too!
I am proud of him. He works hard and gave it his best.... Next Year!

I will post pictures soon!
Just to keep an update on things:

June 2nd/23 wks 4 days
Found out baby girl (Addison Kathelene) had CDH, Congenital Diaphragmatic Hernia.
June 8th/ 24 wks 3 days
Ryan and I went to Ogden for a ultrasound and met with Dr. Herbst.
June 25th/ 26 wks 6 days
We will be going back to Utah, this time to Salt Lake to St Mark's and will have a amino and a MRI and met Dr. Belfort.

Some days are overwhelming.

Organs that are in the chest cavity (that we know of) are intestines and her liver is partially up. Having the liver down is better, her is only half, and we pray that God keeps her liver where it is. The doctor said that her heart looked good and it has been strong right from the beginning. Her heart is moved to the right, so both lungs are smaller than they should be.

JUNE 15th/25 wks 2 days
Met and spoke with my Doctor here in Blackfoot, about making the decision to find a doctor in Idaho Falls. The doctor (who has been my doctor for at least 14 years) agreed that in case of emergency and I have to go to Idaho Falls that I DO need an Idaho Falls Doctor who will now my case and that they need to get me to Salt Lake, ASAP, and it would save 20 minutes, and that is ALOT.
Ryan and I have met 1, we will be meeting with 2 more doctors and go from there.
I love my OB. And thank him for helping me and saying this is about the baby first.
Then he had to listen to her!! And she was wonderful, good heart beat!! Moving like crazy!!
I have a great doctor and love his nurse, I grew up with her as my next door neighbor.
Having to change is hard, bu the right choice for Addison!
We will be praying that God guides us to the right doctor in Idaho Falls, just in case.

I am so thankful for my husband. And for everyone's prayers.
I have my moments. Ryan has his moments. We have each other. We are functioning.
God is good. And with God we will get through this.

I have met parents who have been in our shoes. I have been able to email and facebook with these mothers.
1 mother's son is 5 months old and still in the hospital. 3 mothers are expecting, all due before me. And 1 mothers (who's son was life flighted to Primary's) graduated from kindergarten this year! I have read alot of blogs written by these mothers, and fathers. They are now listed on my blog. Read them. They all have stories. Information. Shawn is Kamryn's father and he has tons of info.
I am so very thankful for the blogs, emails and for facebook!

I wanted to put this on here, its from Terri (Ava's mother)

If I could tell expectant parents one thing I would say,
No matter how grim the odds get, no matter what doctors tell you, there is still Hope that your baby CAN survive.
We were given 20-30% chance of Ava surviving.
Please have Faith in God, even when it looks and feels hopeless.
I am here to remind you that Miracles do Happen.
Ava is living, breathing proof that life is precious and we must strive to help these tiny babies!
If God brings you to it, He can bring you through it!

I know that we all need to trust in GOD.

I will try to keep this blog updated on
ALL family happenings............

Friday, June 11, 2010

Addison Kathelene Reynolds, due Sept, 2010

Wednesday June 2, Ryan and I went for our baby's ultra sound. We were excited to confirm her, or to see if the doctor was wrong. This ultra sound was the "BIG" ultra sound done at the Hospital. You know the one they measure and check on development.
YES it is a GIRL!!!
Addison Kathelene Reynolds is her name!!!

She has big FEET, like her sister KarLee.

She was smiling at us.

Then the tech doing the ultra sound said she had to send the pictures and would be right back.... Then came in the radiologist, Dr. Cardinal.

We were told that our baby had a diaphragmtic hernia..... And he keep talking and we were trying to understand, hernia, well that is not to bad. And he keep talking and then we realized it wasn't about the hernia.

Here is an example.

Here is an post I found that helps sums up things right now.....

What it is like to have a baby with congenital diaphragmatic hernia?

Posted by Jessica Singletary on April 28, 2010
Imagine that you and your partner are expecting a baby. The thrill of the whole thought – another little being. The whole thing is a bit overwhelming and exciting. About the time many are diagnosed, is the 20 week ultrasound.
We were 23 weeks and 4 days.
Most couples go to the doctor excited to perhaps find out the sex of the baby and/or just to get a glimpse of this little one before they are born. Whose mouth and nose does this little one have? No one expects to be told their child has something wrong.
You are in a darkened room in order to see the ultrasound monitor and the tech is actually measuring the size of the head, bones and checking to see the organs. Then they see that something isn’t right. It is hard to not disclose this to the couple who is excited to see their baby, the hands the feet the nose. In that darkened room or perhaps after you are led to an office after the ultrasound, a health professional will then inform you that your unborn child has a birth defect called congenital diaphragmatic hernia.

The survival rates are approximately 50 to 60% and they must tell you that the treatments they endure to save their lives may cause lifetime issues. They also have to tell you that congenital diaphragmatic hernia itself because the child’s organs did not form correctly in development may have lifetime issues.
We were told nothing other then diaphragmatic hernia. Blackfoot only see this maybe every 5 to 10 yrs. We would need to go to Boise or Salt Lake.
So we read. We read alot. We didn't sleep those first nights. We read about options. WE PRAYED.

You are then told there are options. Fetal surgery may be an option but depending upon where you live and the availability of surgeons who specialize in this, it could not be a financially feasible one. It also depends upon the mother’s overall health and the severity of the diaphragmatic hernia, so you must qualify to have this option available to you too. Your insurance coverage may not cover such a procedure. It is highly experimental even today. One day it may not be. You are also told that you should have this infant, if you continue this pregnancy at a level 3 or higher NICU at a Medical Center that has had experience, even with the fetal surgery you would need this too. They may require ECMO, a heart lung bypass in order to save their lives. To imagine your unborn child hooked up to a heart lung bypass? It is overwhelming. This isn’t supposed to happen.

Idaho Falls is a level 3 but Primary's Children's Hospital in Salt Lake is the only hospital in this area with the ECMO.

You will also be given an option to terminate the pregnancy. You just passed the 12 week point where many couples start to breathe easier because you are past the crucial point of miscarriage in the first trimester. You are not supposed to be making life and death decisions for your child. You are supposed to be planning the nursery, picking out clothing and the only worry will be if you truly think you are up to being a mother or a father. Those worries are enough in themselves.

Thank goodness no one has even said the word terminate to me....
Now you are given options if you were prediagnosed prior to birth. You must make these decisions that will not only affect your lives, but your whole family. You will wonder if your choice of hospitals is good and question if you should go to another. None of the choices are easy. You will also be asked to undergo an amniocentesis to rule out any other abnormality with this unborn child. Many times there are none. Sometimes there are other issues.
We are scheduled for amino for the 25 of June at St. Mark's in Salt Lake, her umbilical cord only has 2 vessels instead of 3. and we will also be having a MRI, she has a spot on her brain the doctor wants to take a closer look at.
Only other parents who have faced this understand the unexplainable feelings, the emotions that go from fear, to devastation to determination. Only other parents who have been there and done that can relate to this. Many of us were asked, "How can you?" We just do. We have truly little choice in the matter.

If you choose to interrupt this pregnancy, all the experts have told you based upon countless tests that your unborn child’s chances are less than 50%, you must endure the stigma. You wanted this baby and you chose not to have them suffer. It is not a selfish act but a selfless one. Some will state if you didn’t go full-term this child doesn’t count – so not true.
You will also change because of this experience. Your child will never know the pain and will always be in your hearts.
If you choose continue the pregnancy and hope and pray for the best you will also have doubts and wonder if you can endure seeing your small infant go through surgery, recover and endure. If you are the mother, you will have this constant reminder moving and kicking within you. If you are the father, each time you see your partner, you will have this reminder. The thoughts of what you both will have to endure for your child and what your child will endure will not be far from either of you.
Every morning when you wake, the realness hits you right in the face.
Then there are those couples who were expecting a healthy baby and their child is born and goes into repertory distress. They whisk the baby away and start intubation and assessing the condition of the infant. You may not hear anything for hours. Not knowing what is happening to your child, to this baby you have a nursery prepared for, a life planned out for and now they are taken from you. The doctors will then come to you and tell you of this birth defect which has a 50% mortality rate. Your child may be treated in the hospital you delivered or many times may have to be transported to another for treatment. You are in shock. What in the heck is a congenital diaphragmatic hernia? How did that happen? Why didn’t they see it before? When can I see my child? When can I hold them? Those that had the diagnoses prior to birth at least know of the protocols and procedures that health care institutions do to attempt to save the lives of these babies.
Both will sit by the bedside and pray, hope and wonder what is next? You face the unknown, the lack of control, the overwhelming feeling of parents just to pick their child up who is suffering and ill cannot be acted upon. This isn’t supposed to happen this way! Why your child? No one can give answers to that question. You go from watching the monitors to not watching the monitors to asking if they have had a good day or a good blood gas for the past hour. Sometimes you cling to just a good minute.If you are blessed enough to have your child endure surgery, possibly ECMO and recover from both then the next hurdles are feedings and weaning the painkilling drugs they have been on since birth. This is a slow process. It takes time and patience. Many of these children due to the organs affected may have gastrointestinal reflux and due to the tubes down their throats oral aversions. You wonder how you are going to take care of this once fragile infant at home. You are warned of their lung condition being fragile, that they may not have the immunities other children have and must be guarded against a society full of germs. Your best friend will be anti-bacterial soap and hand sanitizers. (Next to an abundant supply of burp cloths for the reflux.)
And if you are faced with letting them go, allowing them to earn their wings, either by their choice or after being told that everything that could be done has been and there is nothing left to do. That is the worst loss, but each and every parent who has had ever to let their child go in this way will tell you, "We just knew it was time". The most unselfish act in the world is to tell your loved one, "It is okay to go." They will be out of pain, not have to endure any more but that is when your pain will immeasurably increase.
It takes courage, faith, strength you never thought you could have to endure having a child with CDH. You will be the most devastated you ever have been, you will be more exhausted both physically and emotionally than you ever have been before. You will also know that no matter what life throws at you now, it is small compared to what you have endured.

Ryan and I both have wonderful families and the best friends anyone could ask for. We have a wonderful church family. We have support.

We have GOD. And Faith and Hope.

Pray for us, pray for Addison Kathelene. Pray for our family.

Thank you.
Angie & Ryan, Colby & KarLee