Jeremy @ 20 weeks

Jeremy @ 20 weeks
At 20 weeks we found out about CDH on April 19 2011

Thursday, November 3, 2011

Recieved the autopsy report a few weeks ago

So its been a while sense I last posted. So this is what is new I called to find out about Jeremy's autopsy report and the doctors mailed it to me. I read it as soon as it came into the mail. It made me so sad and cry as I was reading it. It said in the report that he  had brown eyes also he had a hole in his heart and his liver was very big. It also had both birth defects CDH & AE/TEF. I had a friend who is a nurse read it to me so I could understand all of the medical terms.  We have gone and visited his grave. It at times feels not real. I am signing back up for school in the fall. Trying to get back in the swing of things. I miss you Jeremy. 

Wednesday, September 7, 2011

Took Isaic to see Jeremy's grave

About a month after Jeremy was born September 6. I took Isaic to see where he was laid to rest. It was hard because all the flowers were gone and there was just dirt. Isaic talked to him and said he misses him. Our family really needs to get a grave stone a.s.a.p

We got married!

We would of loved to have you there Jeremy. We decided on August 24 to go get our marriage license. Then on August 27 2011 around 9:20am we got married at the court house. Just your brothers and our parents your grandparents. It was very simple. We just wanted something good to happen in August. We had you and lost you. Which we thought we would of had more time with you. We were so happy to have you but we had to say good bye. Which was the hardest thing we both have ever had to do. We talked about getting married in October or Feburary. So now your mom and dad are married pumkin!
We love and miss you so much!

Thursday, August 18, 2011

Information on Jeremy's other birth defect EA/TEF

What is TEF/EA?
The trachea is the windpipe and goes to the lungs. The esophagus is the "food pipe" and goes to the stomach. They run side-by-side through the neck and upper chest. Normally the trachea and the esophagus are not connected in any way. Very early in the development of a fetus a single tube will divide to form the esophagus and the trachea. For an unknown reason, sometimes the wall does not form properly and a tracheal esophageal fistula and/or esophageal atresia may be the result.

A fistula is an abnormal connection and atresia means a blockage. An esophageal atresia is a blockage in the esophagus, which can occur with or without a fistula. There are a variety of ways the esophagus and trachea can be connected with a fistula.
There are five different variations of a TEF. The one that Jeremy had I think it was this one. Esophageal Atresia with Tracheoesophageal Fistula.
 An absence of a portion of the esophagus with fistula connections to the trachea from both the upper and lower portions of the esophagus; this accounts for 1 percent of cases.
* information from this website

Today I stopped by to see Jeremy's grave

I was in the car and heard this song called If I Die Young by The Band Perry. It made me think of you Jeremy, so I went to your grave site. It has not been that long sense we said our good byes. It made me sad and cry because I miss you so much. The ground was covered with all the flowers you received from the funeral. I will be back and visit you soon.


Tuesday, August 16, 2011

Another day down!

I just wish this was a bad dream and I could wake up and have my sweet baby! I feel so lost and sad. I am trying to go back to normal. I am okay but at moments it is just so hard and I start to cry. I hope this gets easier. 

Sunday, August 14, 2011

Yesterday we laid our angel to rest!

Babies are angels that fly to earth, their wings disappear at the time of their birth. One look in their eyes and were never the same, it's a little one we created and gave a name. Little eyes open, an everlasting bond, as we hold him while he slips onto the beyond. A bond we now have that will never sever, as our baby is now an Angel that we will love forever.

On August 13 2011 on saturday from 8:45 a.m. to 10 a.m. we had the funeral for Jeremy. He was laid to rest around 10:45 a.m.  I woke up and just couldn't believe that today I had to say good bye to my sweet angel. I just wish I had more time with him. To hold him and tell him I will always love him and will miss him. I always hoped and prayed the doctors could of been wrong and he would be here now. That it didn't have to happen this way. The service was nice a lot of friends and family came.  Jeremy looked really cute like a little angel. He was in all white and looked like he was sleeping. We had him put in the children's garden because we don't have any plots for ourselves. I pray he is with god now and is in no pain and one day I will see him again. I really wish he could come to me in my dreams.  I feel like I need to do something in his honor. I want to do a charity to find a cure or anything. At the moment I am not sure what but I will do something!

Dear Jeremy
I love you so much and this is the hardest thing to ever go threw. To have you inside me for 8 months and now to have you gone. To only be with you for a few hours and then your are gone. I feel like a part of me died when you did. I just hope you felt our love and that I really tried to get the best medical attention to help you!
Love Mom
missing you so much!

Tuesday, August 9, 2011

I am home!

I have been home for a few hours and its hard because Jeremy is missing from me! Before I left the hospital  I wanted one last good bye. So they brought him down and I was able to hold him and tell him I loved him and will see him in a few days and then he can rest. I also figured out where the funeral was going to be. It will be in the town we live in. The director was really nice and worked out a good price for us. Which is sad you have to put a price on your loved one. It will be in a few days on Saturday. I have a feeling this will be the hardest thing I ever have to go threw.

Dear Jeremy I we will always love you and I hope you felt our love for the short time we had with you!
love mom and dad

Trying to find a resting place for Jeremy!

Yesterday I called one funeral home and it was the hardest thing I have every had to do. The guy on the phone was like yes you want information on a burial plot for your deceased son. To hear those words it was so hard. For someone to just be able to say it like it wasn't anything hurt. The expense is a lot more than I thought it would be. The funeral home was trying to get me to do a cremation which was around 1,000 and a burial with no funeral was 2,000. So I asked what it would be for a funeral and burial he said around 3,000.  I really want to be able to say my last good bye to Jeremy and see him. Not just have them put him into a casket and put him into the ground and never see him! I should of looked into this before I was just hoping I would of never had too. After that phone call I wasn't feeling good and was sick which wasn't easy with just having a c-section. I rested the rest of the day. I also received today all of Jeremy's belongings which was hard! The nurses made a plaster imprint of his hand and feet. Later I looked in the memory box they had for him with Bobby and there was his comb they used and one of his blood pressure straps.  Then we found a baby ring and also a snip of is hair. Which I wasn't expecting and it made me so sad. I miss him so much and just wish we had more time with him!  So today I have to make some calls and find something quick. The hospital told me that babies only have a few days. I have a few friends that are going to help me look and to see if any charities could help too.

Jeremy was born on August 5 2011 and passed on August 7 2011

This is what happened over the past few days. On thursday August 4 all  day I was having bad pains in my sides. Almost like someone was stabbing me. Called the doctor and they said to come in. Around 11pm we were at Lutheran General.  They checked me and I was dilated to 3 cm, but I wasn't having contractions. They decided to keep me overnight.

On friday the pain medicine they gave me helped then later in the day it didn't. The doctors were going to do an ultrasound of my stomach. Well I felt a little wetness come out. They check and it was water. With all the doctor's I see some say c-section and others say vaginal birth. They decided to break some of the water and try for a vaginal birth.  They took me to the operating room to break the water. I had so much that it sound like someone turned on a hose from outside. After that we went back to my room.  They checked me and I was bleeding a lot. They say I was hemorrhaging and that my placenta was tearing.  So they had to take me back to the operating room for an emergancy c-section. Before they broke my water they gave me an epidural. Which I didn't think it was working. When I was laying down for the c-section they were checking to see if I could feel anything.  Which I could feel every time they pocked me or touched me. They decided to put me under. Which I was scared to have a c-section and then be put under. I wasn't ready for all this!

Jeremy Robert Nolan was born August 5 2011 at 10:24pm.  He weighed 7lbs and 1oz.  They had problems getting him on oxygen and clean his lungs out.  He has the CDH and he also has tracheal Esophageal Fistula (TEF). The TEF says it happens at 4 weeks of being pregnant. They didn't find this out till he was born. The way the doctor explained it was his esophagus stopped and didn't go to stomach and that air was being pushed to his lungs and then in his stomach and intestines. To get him ready for ecmo they needed all the air out of his body and to be able to put tubes down his esophagus. So he wasn't a candidate for ecmo. They told us after he was born that with all the medical conditions there wasn't much they could do.  After we saw him for an hour they made me go back to the room, because I lost so much blood. We went to sleep and in the morning we had a meeting with the doctors and nurses. They said medically they did everything they can. We decided to go back a little later because they made me go rest. After resting we were going to see Jeremy. Then this  surgical doctor said she needed to talk to us. She was telling us he was doing so good and that maybe sunday morning they could do a surgery to fix the TFE. Bobby and I were so confused hours earlier they said they couldn't do anything and now this. We were just getting ready to say good bye.  We went down and he was doing good, he was really pink and his oxygen levels were good and heart rate was good.  So we deiced to see how he was in the morning.

I really was hoping I would have to never have to type these words. At 2am we received a call from the doctor's in the NICU that he wasn't doing good at all.  So we hurried down and he looked purple and his heart rate and oxygen levels were really bad. His poor little tummy was full of air and was so hard.  They gave us a choice to do CPR or let him go on his own. So we felt with all the air in his stomach and intestines that it would be so painful to have more air pushed in. He could only take so much. The nurses took him off the machines and we were able to hold him for the first time. Jeremy's heart rate kept dropping 90's, 60's and when we held him it was in the 30's. Also his oxygen to his brain was in the 30's which a good range is (60 to 80's). He was just a cute little baby. We will miss him so much. I just wished we had more time with him. That I could of went down to see him more. I was hoping and praying that his wouldn't happen.

Dear Jeremy
 we love you so much and you will be forever missed. I can't wait to hold and see you again.
Love Mommy, Daddy
& Isaic , Aiden

Will try and post a few pictures soon. I have been in the hospital sense thursday and should go home on tuesday.

Monday, August 1, 2011

Doctor's appointment today! I am 35 weeks today!

Jeremy is doing good! During the ultrasound he was practice breathing, which some CDH babies don't do. Jeremy did this 3 different times! The doctor said he wants to do a c-section august 23! ugh 3 more weeks! my belly measures from pelvis to my diaphragm 49cm (which should be like 35cm) and I have 46.5cm of fluid (which 8 to 25cm is the norm). I have another appointment next tuesday hopefully this doctor will let me go a little earlier!

Dear Jeremy we love you and can't wait to see your sweet face!
Love Mom and Dad
and the boys!

Wednesday, July 27, 2011

Update from the past few days!

On saturday morning at 5 am I was getting pain in my leg so called the doctor and he said to come in. The reason is it could be a blood clot. So we went to the hospital and was there from 9 a.m. to 3 p.m. they did an ultrasound of my leg. It turned out not to be a blood clot so I was able to go home.

Then on tuesday I went to the doctors for a check up. It was for a stress test. Which Jeremy kept moving around so they had to do an ultrasound and also check the fluids.  In the doctor's office that I go to there are 7 different doctors. I have seen 2 in the office and 2 in the hospital. The way it works if you go into labor you get whoever is on call and if you have a c-section you can pick your doctor!  So when I went in the doctor I had was one of the ones I saw in the hospital. This doctor was really nice and seemed to care and that he will do whatever they can do for Jeremy. The last doctor I met with said I will have a vaginal birth and this doctor said I should have a c-section because of all the extra fluid.  He was also concerned that the doctors have not had a meeting with me about the delivery. Which I have been trying to get as much stuff planned out as I could. I have another appointment on monday with a different doctor and this new doctor will be gone on vacation for a week. So I hope and pray that I can hold out a few more weeks.

Dear Jeremy,
Please stay in my belly a few more weeks. I am 34 weeks and I need you to stay in till 36 weeks or longer! We love you and are praying for you everyday!

Friday, July 22, 2011

Just a little note!

As time gets closer I am getting a little scared and nervous! To have no answers till Jeremy is here is so hard! Wish I could see in the future and find out what will happen to Jeremy! I am truly thankful! To be taught such a wonderful lesson from a sweet baby! That life is never guaranteed and that I need to not take anything for granted. I pray and hope Jeremy can live a long life with his family!

Jeremy we love you so much and I hope you can feel our love!

Wednesday, July 20, 2011

I get to go home today!

This morning the doctor on call said I could go home! I am a little worried about going home.  I have had a wonderful nursing staff take care of me for days so it will be weird to be on my own. So very thankful for meeting all the nurses and talking with them! They also helped me too! I can get through this! I have made it this far! I just have to remember one day at a time! On thursday Bobby wont be working so he can help! Which makes me feel better that he will be home! I met with a few people today about planning for when Jeremy comes! That way we have everything planned out like who will be at the delivery, pictures, and also so someone keeps us informed when he is born so we are in the loop. So there will be a written document that states all of our wishes for Jeremy and they will make sure they follow it!  I also had an ultrasound today Jeremy looked so cute he was sucking on his thumb! They checked to see how dilated I am which I haven't changed at all! So that is good! I have to keep taking medicine and my next appointment with the doctor is on tuesday!

Jeremy thank you for staying in mommy's belly! We love you so much!

Tuesday, July 19, 2011

Day 4 of the hospital stay!

 The doctor came in and said maybe wednesday I can go home! The problem is I am 33 weeks and I keep having small contractions so they want to watch me & Jeremy! They are trying to get me to 35 weeks! The main reason is due to the massive amount of fluid called polyhydramnios. I should find out more on wednesday! I will also be meeting with more specialists on wednesday! I am glade that I am here to make sure Jeremy is safe and to be taken care of by the wonderful nurse's and the rest of the staff at Lutheran General! At times I do get bored but it is for the best interest of Jeremy to be safe in my belly and to not come early!

We love you Jeremy!

Monday, July 18, 2011

Still in the hospital!

They doctor just came in and said they are going to start me on a different medicine, because the first one to stop labor is only to be taken for 72 hours.  The contractions come and go, he said because I have so much fluid in my belly thats going to happen. So he said they are going to try and get me home but it might be few more days! The new medicine I could take at home. Tuesday might find out more! He also said when I go home that will need bed rest.

Dear Jeremy stay in my belly for a long as you can! So when you do come out, you have a fighting chance to beat the CDH!
We all love you!

Sunday, July 17, 2011

Now maybe tuesday!

The doctor checked me and said maybe tuesday now! Will find out more on monday!

The past few days have been in the hospital!

Late friday night I was having pains in my lower stomach. So I called the doctor  he said to come in and get checked out. At first they thought that maybe it was just growing pains. Well it turned out to be pre-term labor. They did one test to see if I was in labor and that came out positive. Then they checked my cervix it was 1 cm, then an hour later it was 2 cm. The doctors gave me some meds to stop the contractions and the pre-term labor, a steroid shot for Jeremy's lungs. So if he was to be born early that it could give his lung a little boost. On saturday they checked me and the meds are working no contractions. They want me to stay till monday. I should find out more later today. One of the nurses told me I have as much fluid in my belly as that of someone with triplets lol! Also there has been some talk of maybe bed rest after I leave the hospital. Please pray for Jeremy to stay in as long as possible. The doctors have told me that if he needs ecmo he needs to be at least 34 weeks. I am 33 weeks today! Jeremy we love you and hope and pray you stay in longer and keep growing!

Thursday, July 14, 2011

Today I met with the neonatologist!

Had the meeting at Lutheran General with one of the neonatologist. There are 18 different doctors! He was really nice but pretty much told me how he thought it might be. Which was more bad news! I am so sick of hearing all the bad! I hope soon something good will happen! With Jeremy he has a bad case of CDH his heart is on the right side and all the organs are in the other side. Which is making the lungs not grow that much. The main concern is how little his lungs are and the hypertension. When he is born the doctor said they will put a breathing tube in him a.s.a.p!  Then they will give him medicine to relax him so he leaves the tubes and other stuff alone. Then if he can't handle that they put him on the ecmo machine. Which they should only be on for at least 4 weeks. The doctor said the bad part about ecmo is getting the baby off and breathing on his own. The lungs have years to grow but if they can't function without a machine, what kinda of life is that? After that meeting I had a stress test on the baby to do! Jeremy moved so much that they had to try and do an ultrasound. That must not have worked I have to come back monday to do it all over again.

God bless you Jeremy, mommy loves you!

Thursday, July 7, 2011

Had doctors appointment today!

Well, baby Jeremy is about 5lbs! He is growing good! I am 31 weeks only 9 more to go. I asked the doctor if I would go to 40 weeks? He said maybe 38 to 39 weeks. Also have been wondering about the delivery c-section or vaginal? With my son I had a vaginal birth! The doctor said more likely I would do the same with this one too! I just want to do whatever that will help baby Jeremy! So the doctor received all the medical reports from St. Louis and the head to lung ratio wasn't correct. The doctor said it was below 1. I pray that despite all of this baby Jeremy will live a long and healthy life! That he can prove to anyone  that there are miracles!

Tuesday, July 5, 2011

So have been thinking that I wanted to get Jeremy a gift!

So a few months ago I was buying a gift for a baby shower and one of the items I decided to buy was a stuffed elephant that makes music. I have not bought anything for Jeremy yet. So I have been kinda not sure if I should or should I wait. Well, I decided to buy the elephant a week ago and I thought he could hear it now and then when he is here! So maybe the hospital stay won't be so bad with a familiar sound! Today I was playing it for him and he kept kicking and moving all around! :) I love you Jeremy I can't wait to meet you!

Thursday, June 23, 2011

Recieved a package for baby Jeremy today, that I wasn't expecting!

So when I first found out I was expecting with a baby boy with CDH I signed up for the support group Which when I did I kept messing up. So today recieved a CHERUB tote bag for baby Jeremy! Which I was greatly supprised. Thank you Dawn M. Williamson President and founder. In the box there are iteams donated from families that have lost babies to CDH. There was a baby blanked, cute blue socks, a blue hat, awarness bracelet, awarness pins, tissues, a children's book, a baby book, wings for the baby, tote bag, a certificate for baby Jeremy that stated he is a cherub! It made me cry but also made be very thankful that there are such caring people out there! 

Thursday, June 16, 2011

Recieved a call from St. Louis Yesterday!!!!

So the review board would like me to come back and do the measurements again. Then they can see if they can do the surgery ( trachea occlusion). Which needs to be done between 26 to 28 weeks. The problem is they want me to come back like today.  Also, if they do the surgery I would have to be there for 2 weeks. When I deliver, which they want me to go to St. Louis when I am 34 weeks and then have a c-section at 38 weeks. Dr. Yang will be out of the country till the end of august. Which would be when I am do. I will be 29 weeks on sunday and I am moving next weekend. After a talk with a few friends and Bobby, I decided that I wouldn't go. Which I hope one day I will not regret. I just feel like it isn't the time now.  That I already had a chance a few weeks ago. What if I would go and something happened to me or baby Jeremy. I just feel like he has a better chance growing inside me. I want to leave it up in gods hands now! Baby Jeremy I love you so much and every time you move in my belly I am so thankful for it. I can't wait to meet you.

Thursday, June 9, 2011

Dr. Yang called from St. Louis yesterday!

To update I received a call yesterday from Dr. Yang from the Fetal Care Institute. The review board denied it because baby Jeremy's head to lung ratio was so high. They don't want to put me or the baby at risk. Also, they don't want to make things worse than they are.  To cause early labor and a preterm baby.  He said he will call in a week and see if the review board might change their decision. He offered for me to deliver in St. Louis. So I have some choices to make.  To deliver in IL or MO?  Not sure at the moment what I am going to do. I am going to try and not worry so much and take it day by day. I am very thankful I had the chance to go to St. Louis and get another look.  

Tuesday, June 7, 2011

Waiting is not for me!

I couldn't wait any longer. So at 2 p.m. I called St. Louis SSM Cardinal Glennon Children's Medical Center. They transfered me to the nurse. She said that Dr. Yang would call me back because he was in the OR. Before she got off the phone I asked her is it good or bad news. The response was its not good. With all the test I had done last week when I was there. The head to lung ratio came back high, which is good but it could be off. When I was 20 weeks it was .67 and now at 26 weeks it was 1.8 and the next day it was 2. ( the head to lung ratio is where they measure the head circumference and the chest circumference and come up with a number) When they take all the medical records to the review board they have a range for each test. So sense the head to lung ratio was high we got denied. I don't understand because that test could be off. So now I guess we wait till Jeremy is here and go from there. I can't believe I was so close to having help now. I pray my little boy makes it.

Visited the NICU!

June 6 2011 I had an appointment at Lutheran General to check the fluids around the baby. After that I met with the head nurse of the NICU. I was able to see for my own eyes the echmo machine and all the breathing machines that baby Jeremy will be on. She explained very well on how each one worked and what is does. Its a little scary to think that this poor little baby will be on all these machines to help him survive. We also walked through and saw other babies that were in the NICU. Some were preemies and others had other birth defects. It made me sad to think very soon I will be here. I am 27 weeks and the time is going quickly. Jeremy moves around a lot in my belly. I hope he is ready for all this and is a fighter!  I am still waiting on St. Louis for an answer to the review board if they will be able to do something now! I really don't like waiting! God please help baby Jeremy.

Sunday, June 5, 2011

Back Home!

So tuesday we left for St. Louis we didn't leave till 6 p.m. and we got there around 1 a.m. We had to stop a few times because of the kids and of course me. The hotel Drury INN was really nice, the fetal care institute made reservations for us.
The next day wednesday I had an MRI. Then met and talked with the St. Louis Fetal Care Institute. Every one was very nice! Then when I got back to the hotel the kids and my friend we all went swimming.  Later that night Kasey's parents came down to help us out because they were thinking of having me until friday.
Thursday we went to the zoo and then I had an ultra sound and met with Dr. Yang the surgeon, Dr. Myles and the genetics.  So the bad news is it is still very bad case of CDH and baby Jeremy's liver, stomach, intestines are in his chest cavity. The kinda good news is his head to lung ratio is higher 1.8 (which they measure the chest and then the head circumference) Thats how they get the number. So Dr. Yang wanted me to come back friday to get the echo of the babies heart and another ultra sound.  So after all that we all went to dinner.
Then friday I had to be at the appointment at 8 a.m. so everyone was sleeping. The echo of babies heart looks good! They are kinda of worried about me because I have the aortic stenosis. Which they have not received my records from Rockford memorial. I had another ultra sound and this time the head to lung ratio was even higher it was 2. After hearing this news I went to the chapel inside of the hospital which helped. I am sad but I still have hope and will not give up. The St. Louis fetal care institute has to bring all the medical information about baby Jeremy and myself to a review board. To see if they can help us. The main problem is because the lung to head to lung ratio could be off, that it is so high. It could not meet the requirements they need to do anything now.
 The good news is that baby Jeremy has 2 lungs they are both small and one is a little bigger than the other.  I should find out later this week what is going to happen if they can help or not.
It is so hard to be so close and it might not work! I pray that baby Jeremy will get all the help he needs to make it. This little guy moves around so much in my belly. I have a feeling deep down that he will be a fighter.

Tuesday, May 31, 2011

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!

Saturday, May 28, 2011

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! 

Friday, May 27, 2011

What might happen to baby Jeremy!

Result of type: documentExperimental 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 …

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.

Thursday, May 26, 2011

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. 

Illustration of congenital diaphragmatic hernia
    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*   &