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!


MaKeene said...

It's wonderful to have this kind of technology. God, does some wonderous things. One being the gift he gives to the doctors and the people of his/her staff. God, has given Lori the beggest gift of all. The ability to get through it. Hang in ther Aaron and Lori, you have been touched by an angel and her name is Naveah. Love to you always. Great Aunt Vickie!

carolyn q said...

Please know you don't have to walk this path alone. . .we will do whatever we can to help support you.
Heart Hugs,

The Smiths said...

praying for you! this is Joy--mommateapot from cafemom. It was good that you got to see the PICU. That helped me alot before my daughter had her heart surgery. You and the family will be in our prayers, especially Nevaeh. God has something special for her.

Anonymous said...

My daughter had the same surgery May 14, 2007 when she was just 6 days old! She is doing great now and has not had any heart complications, though she was in the hospital for 11 weeks out of her first 4 months with what we later found out to be bowel malrotation that was surgically corrected and she has been fine ever since!! We are now working on catching up on her milestones since she is behind due to all the hospital time!! We also have 2 boys that were at home during the hospital stuff and it was hard trying to stay with Emmy and be home for the boys at the same time! You just want to clone yourself so you can be in both places at the same time!!! We will be praying for you and your family! I can't wait to hear how great she is doing and see lots of pictures! I have lots from the hospital, if you want to see some so you can know what to expect, LMK, though I don't think anything can quite compare to seeing your own baby in that situation! For me, the hardest part was carrying her down to the OR holding area and handing her to the surgeon... I still cry when I think of having to do that!!!!
~Lisa Scholl, from Cafemom

Vaeh's Blog said...

Glad that you were able to tour the unit where she'll be after surgery. Yes, it is very hard, but you are one step ahead & will kind of know what to expect. We weren't afforded that luxury, as we found out about our Nevaeh's defect after her birth.

Know that you have so many people praying for you & supporting you, whether in person or in "blogger-land." Feel free to email me to chat any time (gabnvaeh@yahoo.com).

Always praying...
Tina & Vaeh:0) (Jon & Gabby, too!)

Little Loveys Mom said...

hi there..i'm in your HB on CM...just wanted to say I have your family and little Nevaeh in my prayers...thanks for the updates...

Likes Chocolate said...

I remeber as if it was yesterday being in your position. I also did not have the test done to make sure there were no other condition beside the heart defect and it was hard waiting. However, I like to think of the scripture that says be still and fear not. You just have to put it all in his hands and he will walk besides you. He really does, but it is hard waiting. We will say a prayer for your family

Wendy said...

Hi Lori,

I, too, am a member of IHH, but hardly ever post. I do read the messages, though, and wanted you to know that I'll be praying for you as you travel this scary road!

My husband and I also knew before Emma's birth that she would have heart defects....and a good possibility of a genetic condition. We worried ourselves sick, scouring the internet, wondering what it could be. Down Syndrome was mentioned and so was Di George. It turned out to be a rare chromosome 6 deletion...something the geneticist had never seen.

Since then, we've found an online support group and met many other families with a similar deletion. I've only found 2 with the same heart defect as Emma.

She's the light of our lives....happy and sweet, in spite of her challenges. I know that Nevaeh will be the same for your family as well. I remember the worries and the fears...and the tears. Stay strong, and know that you have so many already praying for you and your family.

Heart Hugs from Syracuse, UT!

Wendy (& Emma, too!) ~ 2 1/2 years old, 6q25.3-qter deletion, TOF


Gourley Family said...

We are excited to meet your sweet angel. My niece continues to hold her own, but for the most part has been a sick little girl. You just never know. I just pray that Naveah (sorry if that is spelled wrong) is strong and I know that she is guarded and attended to by some of the best angels around! Prayers to your family!
Emily and Mike
(Proud parents to Lilly and Ryker!)

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