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 http://www.chw.org

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.

Love
MOM
xoxox

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. 

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!

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.

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!