Road trip to ST. LOUIS!

We are leaving tonight for St. Louis with miss Kasey and the boys! Will be back in few days! Wish me luck that they can help Jeremy! We should be back thursday! Wednesday  will have the MRI and thursday will have the ultrasound and meet with the specialists! I need to start packing, hope the boys will be good and we are going to try and go to the zoo, the Missouri Botanical Garden if we have time. So they have something to do thats fun!

I missed a call today at 8am from St. Louis!

I just called them back and they went over all my medical reports and would like to have me come down this week. If I can they want me to come down tonight and have an appointment in the morning. I can't believe this is really happening I am kinda in a little shock. Will find out when they call me back when they could see me. I really hope and pray this helps Jeremy! So when I go to st. louis I would have an MRI, fetal echo, ultrasound, gentic counsling.  Then I will meet with the other doctors and also Dr. Yang. So now I need to see if someone will drive with me I don't want to drive alone!

So happy Jeremy has 1 follower!

Thanks Dad it means a lot for you to be the first follower of Jeremy's Blog. I started this blog a few days ago and am so thankful for all the views of it from everyone thank you! 

What might happen to baby Jeremy!

Experimental surgery expected to save lives

For many babies with CDH there is little chance of survival when they are born. … A similar CDHprocedure carried out in Europe places a balloon in the fetus' trachea, which obstruct … The CDH was discovered when a mother, a northwest St. Louis resident, came in for a routine ultrasou …

http://www.cardinalglennon.com/News/Pages/Experimentalsurgeryexpectedtosavelives.aspx - 50KB - Lubus, Lauren - 12/21/2009

So I am going to be a pain and call can't wait any longer!

      I just got done calling SSM Cardinal Glennon Children's Medical Center. They have all my medical information and are going over it. The receptionist said they might get back to me today or tuesday. I hope it is later today so I can get this all planned out. I am not a patient person, so the waiting will bug me. I have to do what I have to do.
After going through all this it is the hardest thing I have ever had to go through. I am trying to be as positive as I can and pray and hope for best.  I also have the worse case senerio in my mind. Well good bye for now and will write more when I find out when I have an appointment.

Isaiah 41:10 NIV

So do not fear for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand

I Can't wait till Friday

      So to update a little. In the past 5 weeks I have been on youtube,baby-center, blogs, the internet, researching CDH as much as I can.  I was messaging a women on baby-center, who was telling me about a doctor in St. Louis.  Which at the time wasn't sure if I was able to go to St. Louis. A few weeks later I received an email from that doctor. His name is Dr. Yang at SSM Cardinal Glennon Children's Medical Center.  I emailed him a little about what it is going on with Jeremy. I needed to get a referral to go to St. Louis. Which by now I have seen my original obgyn then another doctor, then my care was transfered to a few more doctors. I just want someone who cares and wants to help. The doctors I have seen are very medical and I feel like I am just a number to them. 

On monday I had another ultra sound this doctor was very caring and he said that not much can be done until he is born. The doctor said he would call Dr. Yang to talk with him.  

Today I talked to the doctor and he said he would put my referral in and send all my medical information over.  The main problem is because all of his organs are in his chest the lungs can't form.  I read that Dr. Yang can do a procedure to help this. It is a Tracheal Occlusion. So hopefully friday they call so I can go to St. Louis to get another look and more options for baby Jeremy.

The day that changed my life forever!

On April 19 2011 at 20 weeks we went to get an ultra sound done. The ultra sound tech said the babies heart was on the wrong side. We didn't think much about it until the doctor came in and said the words Congenital Diaphragmatic Hernia. We had never heard of this birth defect.  The doctor said most people terminate when their cases are so serve.  I did whatever we could that day. I had the amniocentesis done.  I cried all the way home worrying about how this sweet baby boy could have such a life threatening birth defect.

I have been having a feeling I want to share my unborn son's story of Congenital Diaphragmatic Hernia! I have looked at other blogs and I just want more people to be aware of  this birth defect.  I am currently 25 weeks pregnant with my second child, who we are going to name Jeremy (which means GOD WILL UPLIFT).  
  My son has the Bochdalek.  Jeremy's case is very severe the doctors give him a 20-30% of survival, his heart is pushed to the right side of his body and his stomach is below the heart, the liver and intestines are in the cavity.  The opening of the hernia is very big.  Which they can do surgery when he is born. The main concern is that the lungs won't form because of all the other organs in the chest cavity taking up the space needed for the lungs.  At 20 weeks his lung to head ratio was .67 which isn't good.

    Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the US each year).  The cause of CDH is not yet known. Roughly 50% of babies born with CDH do not survive.   Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems.  A few of the survivors suffer from severe long term medical conditions. 

    So a little about this birth defect what happens is in the 8 to 10 week the diaphragm is formed with these babies there is a hole or not much of the diaphragm. Which then causes other organs to go in the chest cavity like the stomach, liver, intestines, and it pushes the heart on the wrong side. There are 2 different kinds of this hernia Bochdalek, Morgagni. 

Bochdalek hernia - A Bochdalek hernia involves an opening on the left side of the diaphragm. The stomach and intestines usually move up into the chest cavity.

• Morgagni hernia - A Morgagni hernia involves an opening on the right side of the diaphragm. The liver and intestines usually move up into the chest cavity.
• Neonatal intensive care - A diaphragmatic hernia is a life-threatening illness and requires care in a neonatal intensive care unit (NICU). Babies with diaphragmatic hernia are often unable to breathe effectively on their own because their lungs are underdeveloped. Most babies will need to be placed on a breathing machine called a mechanical ventilator to help their breathing. 

ECMO - Some infants may need to be placed on a temporary heart/lung bypass machine called ECMO if they have severe problems. ECMO does the job that the heart and lungs would be doing: putting oxygen in the bloodstream and pumping blood to the body. ECMO may be used temporarily while a baby's condition stabilizes and improves. 

Surgery - When the baby's condition has improved, the diaphragmatic hernia will be repaired with an operation. The stomach, intestine and other abdominal organs are moved from the chest cavity back to the abdominal cavity. The hole in the diaphragm is repaired.

Betamethosone Steroids - Steroid treatments that encourage lung growth.   Given to mothers while pregnant, these steroids are commonly given to those who are expected to go into preterm labor and deliver babies with small lungs. 

Tracheal Occlusion - A procedure during which a plug (or gel) is placed into the baby's trachea while he/she is still in utero.  The pressure forces the lungs to expand.   Those who use a plug must have a second surgery before birth to remove the plug from the trachea.  

Perflubron Induced Lung Growth - Filling the lungs with Perflubron (a special liquid) and placing this liquid under constant pressure to stimulate the lungs to grow.

*  information from a few different medical websites*
www.cdhsupport.org   &  http://www.chw.org