Tuesday, July 29, 2008

Hi all! As always thank you so much for your prayers! I went to the doctor last week and they have decided on inducing. It was so nice to see a doctor without hearing anything new. The scheduled day for delivery is Aug 15th at 7am!

I am excited to not be pregnant any more but at the same time I am scared. I know she is safe and sound in my tummy so part of me would like to keep her there. We have her nursery done and almost have everything we need. We are still lacking a car seat. The boys seat is no longer up to current codes and it has expired. So that is the main thing we are working on.



Tuesday, July 15, 2008

Appointment Update 7-15-2008

Today i had an appointment with the Cardiologist. He spent some time looking things over and has decided that she will need surgery after birth. At this point he is not sure which surgery he is looking at, because there are some details that he will not be able to see until she is born. He is leaning toward her only needing her great arteries corrected. Otherwise she will need a double switch. We are not going to know until she is born which one she is going to need. He is not in total agreement with my other Dr that told me she may have Downs. He said he has never seen this heart condition with a downs baby. So he thinks i have a lower risk then what the other doctor says. So all that said we really do not know much more than before and will not know until she is here.

I took a tour of PICU at primary children's today and it was very hard to see. There was another baby there that just had heart surgery and I was able to see her with all the tubes and machines she was connected to. It was so hard to see. I had a very hard time stepping into the room. All I could do is cry at first. They gave me some time to take it in so i could then ask questions. It was informative but so hard. I am glad that I did go. I really needed a reality check as to what we are going to be faced with. I really have been in denial that my baby is going to need anything done. But that is not the reality of things and I need to prepare my heart to be there for Nevaeh and her special heart.

Thank you all for your prayers and support. It really does mean so much to me that you are there for us as a family. Many of you have been asking what you can do to help us. As of right now I am only needing friends to talk to and occasional help with the boys while i go to the doctor. Many of you have been there helping with that already and i thank you. After we find out what surgery she is going to need that will tell us how long she will be in the hospital for. We are expected to be there anywhere from 2-8 weeks. Aaron will be home with the boys for two weeks but after that is going to have to return to work. We are going to need to find childcare for the boys during that time. So in the mean time please just pray pray pray! Thank you all!

Tuesday, July 1, 2008

Our Appointment 7/1/2008

We had another ultrasound today with the doctor that is going to deliver Nevaeh. He has noticed that she is not growing on the growth curve and her legs are looking twisted. This combination plus her heart condition is leading the doctor to believe that She may have Down syndrome. The Doctor is giving us a 1 in 10 odds that she will. So please pray for sweet Nevaeh.

My Heart.

The diagnosis for Nevaeh is she has Dextocardia, Ventricular inversion, and Transposition of the great Arteries. The combination of Ventricular inversion and Transposition of the Great Arteries is called Congenital Corrected Transposition (cctga). What this means is the Right Ventricle usually feeds the blood to the lungs. So it does not need to produce much pressure to get the blood to the Lungs. But in Nevaeh’s case this ventricle is feeding the blood to her body. This requires the right ventricle to work much harder than it is made to do. The surgery to correct this is very complex so we are waiting and watching her after she is born to see if the right ventricle will be able to handle this extra work. In many cases this is can and does happen. But it is a case by case basis and there is no way to know ahead of time if it is going to be able to pick up the slack. She can still be a normal active little girl as long as the right ventricle does the extra work. So we are praying that God gives her heart the strength it needs to perform properly. In addition to all this there is also a possibility of the Aorta has a narrowing. This means that there is not enough room for all the blood to flow to the body. So I will be delivering at The U right next to Primary Children’s in order to have Nevaeh’s heart looked at right after birth. They will then be able to see if the Aorta has narrowed. If it has then they will perform a minor surgery to fix this problem. We will not know for sure if this is needed until after she is born. So we thank you all for your prayers and ask that you all continue to pray for Nevaeh. You are all more than welcome to tell anyone that would also join us in prayer. The more prayer the better.

Thank you all for your prayers.

The Jones family

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