Kayleigh's Journey

From Hannah, Kayleigh's mom:

When I was 20 weeks pregnant I found out I was having a lil girl. I was super happy because it was the first girl for me. The next appt 4 weeks later they found some things that didn't look right in the ultrasound. The Dr came in and had informed me and my mom that she had a birth defect. Dr said she is surprised we could tell so early in my pregnancy, most the time we can't tell till towards the end of the pregnancy or after the baby is born. I was in shock devastated and hysterical. I was referred to a Dr in Wichita. Me and my mom went and they looked at ultrasounds and my records only to inform me they couldn't help that my best option would be going to Kansas City to children's Mercy. We got a appt and more ultrasounds. Me and my family were just happy we found Dr who could help save my daughter.

We made up a birthing plan so that closer to the end of my pregnancy I could deliver in KC at children's Mercy. Drs informed me that if I delivered in Salina ks where I live that her chances would be low. Her due date was 05-08-15. She was born 03-19-15. That is 50 days early, 7 weeks 1 day early. I thought I was just in pain for getting my house ready and lifting and moving heavy stuff but 2 hours passed the pain progressed. I went to the hospital to find out I was in labor. I freaked crying scared u name it I was a wreck. Dr promised they would make sure my lil girl got the best treatment. An hour passed Dr came back in to inform me she moved and is breach and I needed emergency c section. Again I freaked. 7 hours in labor and finally Kayleigh Mae Jenette Grawberg was born they immediately took her to intibate her to make sure no air got in her lungs. We were waiting for the flight team to show up from KC. They showed up got her ready to be life flighted to KC. I was a nervous wreck. I couldn't go with her due to having c section and having to stay in the hospital. 1 1/2 days they let me go early due to circumstances. When her dad and I got to children's Mercy they informed me she was stable doing good on the ventilator but couldn't do surgery till she got a lil bigger only cuz if she needed the ecmo machine and they did surgery right then it could kill her so they waited 2 weeks and was able to do surgery.

When they got in there more was in chest then thought they put things back where they needed to be and patched the hole. Surgery lasted 3 hours. She was a trooper she never had to be put on the ecmo machine and did very well. She did have to have 2 blood transfusions. Other then that she did very well. 4 weeks later we got told she could come home we were happy scared nervous. Both me and her dad had to spend the night due to them needing to tell us everything we needed to know and show us what to do in bad situations. She had to come home on oxygen and a pulseoximeter machine. We got her home and we're very happy. She did very well she went thru all her milestones later then a normal child but just worked hard to accomplish them. She turned 1 and I was so happy we made it that far she had only been hospitalized one time due to rsv in that year. When she was 14 months we were at a check up in Salina and had to have x-ray and it showed that her patch had come undone so she had to be taking back to KC. When we got there she had a xray and they gave me the best news that it had not come undone that not every one knows what to look for or how it should look when one comes undone. We got to go home. Dec 30 2016 she got sick with rsv again and pnemonia. She was hospitalized for a week, got better came home and is doing everything a normal child would do. She is now 2 and I can't be happier. She is the highlight of my life. She makes things interesting and fun. She very out going and is our baby. I know we are not out of the woods and probably never will be but we go day by day and make every day count with our lil girl.

You can follow Kayleigh's Journey on her Facebook page:

https://www.facebook.com/kayleighsjourney15/

Long Term CDH Complications

Not all CDH babies are the same. Each one handles treatment differently. There are many factors to consider for treatment. Babies who had a more severe diaphragmatic hernia may face challenges which can include learning problems, breathing issues, hearing loss and growth problems. Some CDHers have long term or even life long complication.

Some of these complications can include:

*CDH Recurrence- when the diaphragmatic hernia opens up again and needs to be repaired.
*Respiratory Issues- Often times CDHers lungs are underdeveloped due to the abdominal organs being in the chest cavity not giving the lung space to grow. This is called lung hypoplasia. Some children require oxygen. Some children fatigue easily with exercise or have respiratory problems such as asthma that improve with breathing medications.

*RSV- a common cold virus that infects many people. Children born with CDH don't have normal lung development and are very susceptible to RSV. Many end up in the hospital and on oxygen when they contract RSV.

*Pulmonary Hypertension- constricted blood flow to the lungs. It's common in babies with CDH and can persist beyond a few weeks to many months after birth.

*Gastrointestinal issues

*Nutrition and oral aversion- because it takes so much for CDHers to breathe and they tire easily, it is difficult for them to take in everything they need by mouth. In those cases, a feeding tube would be placed.

*GERD- It is common for CDHers to suffer from GERD where their stomach contents reflux into the esophagus. This is treated with acid reflux meds. In severe cases they undergo a fundoplication surgery to stop the reflux.

*Abdominal pain and appendicitis- CDHers don't have the typical intestine flow because their intestines are up in the chest cavity or jumbled up. Surgeons can only place them back into the abdomen and let them work themselves out. It's important to know this in the event your child develops abdominal pain and a appendicitis is suspected. It's important to  know where the appendix is located because it might be in a different spot than is typical.

*Constipation- It's unknown why CDHers suffer constipation frequently but it can be treated with laxatives.

*Bowel Obstruction- During repair surgery the organs have to be manually put back into the abdomen. This can cause scar tissue or adhesions within the abdomen that can kink the bowel. The kink can block the flow of liquids in the intestines called a bowel obstruction.

*Problems with skeletal development

*Scoliosis- CDHers can develop a curve in the spine as they grow. This could be related to differences in lung size on the two sides of the chest.

*Pectus chest wall deformity- CDHers  may develop a depression of the sternum.

*Hearing loss- babies who have been intubated on a ventilator with oxygen, received multiple meds, or were on ECMO are at risk for hearing loss. Regular hearing loss is advised.

*Developmental delay- children who have been ill and hoapitalized for prolonged periods are at risk for delay in normal development. It's important to identify developmental delay early.

Spread Awareness

When Liam was born with CDH, it left me devastated, scared, unsure. I questioned everything. I was so broken that I spent the first 36 hours crying, screaming and begging God not to take him. The doctors had to sedate me to keep me from bleeding out from the C-section. The specialist gave him zero chance of survival but promised they'd continue to try until there was nothing left they could do.



Liam surprised us all and flew through NICU with just a 48 day stay. Our journey didn't end there though. That was merely the beginning of the end. The struggle was difficult. Our marriage almost didn't survive it. When Liam turned 3 years old, things just changed. He started getting healthier with each passing day. When he turned 4, we all said this was his year. The year where he got to start experiencing life as a healthy boy would. He loved to play in the dirt and be outside. He loved preschool and making friends.



Then one day he got sick. He caught a cold like virus that his weak immune system just couldn't fight off. The virus entered his blood stream and caused an infection. The infection then caused a blood. Ultimately a pulmonary embolism took the life of my happy, sweet little 4 year old. All because of Congenital Diaphragmatic Hernia.



It sounds like some freak accident when you read it, like it could never happen to anyone else. Truth is, it has. Similar circumstances have happened to other children born with CDH because their immune systems are weakened.



In memory of Liam and Maddie, Sean, Isaac, Remy, Mateo, and so many others who were taken from us too soon because of CDH and for Ava, Andrew, Andrew, Patrick and so many others living with the effects of CDH, I will continue to spread CDH awareness. I will continue to tell my sons story. I hope that whoever stumbles upon this blog will too help spread awareness.



There is no known cause to CDH so therefore no way to prevent a baby being born with it. You can say "no not my baby" but you never know. You never truly understand how CDH effects your life until you have a child born with it. 2,500 babies are born with CDH every year in the US. The survival rate right off the bat if only 50%. That is if they don't have any other medical or genetic issues. If they need ECMO their survival rate drops. If they need to be transported, their survival rate drops.



Lets change that. The more awareness we spread, the more research will be done because more people will donate to hospitals currently researching CDH. We can help give future generations a better chance at survival from CDH.



CDH awareness week is March 25th-31st











http://www.facebook.com/shootingforliam

CDH Reality

The reality of CDH is that it changes the lives of everyone connected, even in a small way, to the baby born with CDH. Whether that baby survives NICU, lives a full long life, or grows wings early on, it changes you. Every year 2,500 babies are born with CDH. 50% of those won't make it. Those that survive the initial birth defect and NICU, battle illness and have life long medical problems. Not every baby that survives NICU survives the after effects. When we were in NICU the...re were 4 babies fighting to survive CDH. Before we were released, one passed away. Right after we were released, a second gained wings. We saw that 50% survival rate first hand. Only two of our babies made it out of NICU and home. My son Liam, fought hard to survive. We we're able to bring him home from NICU. Our battle didn't end there. Just because a baby with CDH is released from the hospital doesn't mean they are healthy and "fixed". Healthy becomes a relative term. Healthy just begins to mean, home. They're still sick, still fighting. CDH weakens the lungs, the intestines, the immune system and more. CDHers get sick easily because of this and they stay sick longer. A cold to you is nothing compared to what it does to someone with CDH. A cold means a hospital stay. It often times means IV's and oxygen. A healthy person can be sick for a few days, but in a CDHer's case, like my son Liam, stay sick for weeks. Every parent to a CDHer just wants their baby to be healthy. They'd do anything to help them, including becoming their home nurse. Every day parents of CDHers straddle the line between parent and nurse. Home oxygen, tube feeds, mediport flushes are just a few things so many parents have to learn to do for their children. When I talk about CDH awareness, I think of the whole picture. The babies battling in NICU. The children fighting life long medical problems. The parents who have to become nurses. The doctors and specialist trying to give these kids their best chance. CDH awareness week is March 25th-31st. Will you help raise awareness?

https://youtu.be/vALE42uY7zM

#cdhawareness #congenitialdiaphragmatichernia #s4l #shootingforliam #cdhreality #cdhturquoise #LiamMichaelBryant #littlelamb #angel #fighter

2017 Toy Drive

How you can help us give the sick kids at Valley Children's Hospital a good Christmas.

Reherniation Signs and Symptoms

Having a child with Congenital Diaphragmatic Hernia can be scary for parents, even after the initial repair surgery and NICU stay. Truth is that when our babies graduate from the NICU, our journey isn't over. Just because they repaired the hernia, doesn't mean it can't happen again. It's better to know the signs and symptoms in advance so you can recognize them in your child.

Signs and Symptoms of reherniation may include:
*Difficulty breathing
*Fast breathing
*Fast heart rate
*Cyanosis (blue skin color)
*Feeling sick
*Throwing up frequently, including green bile
*Refusal to eat
*Lethargic
*Fever
*Black tar like stool
*Retching
*Pain

Keep in mind that each child is different and may or may not have any of the above listed symptoms. The severity of the symptoms also depends on the severity of the herniation. Always seek medical attention if your concerned your CDHer may have herniated. Contact your CDH specialist team, pediatrician or take them to ER for X-rays. Always follow up with your pediatrician.

41% of hernia's that were repaired using a patch will require surgery to replace the patch within the first 3 years. As your child grows, the patch will have to be replaced with a bigger one since it doesn't grow with your child. Your child with a patch repair may or may not have any of the symptoms listed above.

Severe Congenital Diaphragmatic Hernia

Congenital Diaphragmatic Hernia Repair

Congenital Diaphragmatic Hernia Patch Repair

It's Never Just A Cold

Imagine you pick your kid up from school one day and they complain of not feeling well. By morning their suffering from a cold. Snotty nose, cough, fever, no appetite (maybe even some vomiting, and no energy at all. It's just a cold right? They'll be fine after it runs its course. But your kid is utterly miserably and therefor so are you watching them suffer. You think "ugh it's "Johnie's" fault my baby is sick! Why couldn't his mother of just kept him home!". Each day your kid wakes up they seem worse. You finally break down and take them to the doctor or urgent care because your doctors office is too busy to see them. You carry your lethargic baby into urgent care, check in and sit to wait to be called. Then look down and see your baby is turning blue. Short version, they rush your baby to ER as you follow behind. Doctors take lung X-rays and ultrasounds of your babies heart but suddenly there's no time to wait for results because your baby starts having seizures and their heart stops. They do all they can but they can't safe your baby. Your world stops. "But it was just a cold. Just a cold" you keep saying to yourself.

You might say that story is a bit far fetched. At one point in my life I was very young and very naive and I wouldn't have believed it either. But there's nothing far fetched about the story above because that's my story. That's how I lost my son. That's how so many other families have lost their children. Why? Because people won't stay home when they're sick. They won't keep their children home when they're sick. Its never "just a cold". Each body reacts differently to viruses. A healthy immune system can fight off a cold no problem. Others end up in the hospital or in ICU and even dead. What you think is "just a cold" could easily be RSV or another virus with similar symptoms. I lost my son a year ago because someone with "just a cold" wouldn't stay home. How would you feel if it was your baby? Look at their sweet faces and tell me how you'd feel if it was them? Please stay home if your sick. Keep your kids home if their sick. Wash and sanitize your hands regularly. Take your vitamins. Tell others to do the same.

Liam Michael Bryant 7/14/11-12/15/15 taken because he caught "just a cold".

Links to help you fight the germs:

RSV Symptoms and prevention

10 Tips to prevent a cold or flu

#childlossawareness #cdhawareness #stopspreadinggerms#itsneverjustacold #liammichaelbryant

2016 Christmas Drive Success

On December 22nd we braved the fog and the hour drive to Valley Children's to deliver gifts just in time for Christmas. Thank you every who donated to our annual Christmas drive in memory of Liam Michael Bryant. We delivered the following with smiles on our faces and joy in our hearts because we know that these gifts will put smiles on the kids in the hospital:

59 complete care packages

Plus the following loose toys: 

16 bubble wands

5 tea sets

1 nerf sport toy

6 coloring books

29 stuffed animals

If you don't see the items you donated listed above, it's because they were put into a care package. Each care package included at the least:

1 toy

1 stuffed animal

1 book or coloring book

crayons, color pencils or markers to go with the coloring books

Some care packages included blankets

NICU care packages included stuffed animals, socks, hat, book, blanket and toothbrush for a parent.

I know each kid loved every toy, every blanket, every stuffed animal. Thank you for helping us help make their Christmas's a little brighter.

(Involving kids in our mission is something I strive for with each event/donation. Liam's big sister Lanie, the blonde in the middle, is always involved in every aspect of Shooting for Liam. From picking out items to donate, to putting together care packages and planning picnic's, she's right there by my side.)

We are already working on next years drive so if you didn't get a chance to donate this year, know you still help with next years. We are now accepting donations for 2017.

Thank you everyone for helping us do something great in memory of our sweet little lamb.