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 www.cdhsupport.org. 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! 

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.

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.  

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.

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.