Pictures of my Faith

iVillage Member
Registered: 08-20-2004
Pictures of my Faith
3
Tue, 09-12-2006 - 3:43pm

I've posted here off and on for the last year or so and thought that I would share a couple of links with some photos as well as Faith's story! Photo links are at the bottom!
Thanks for reading/looking!!
Luanne

Living Faith

In August of 2004 I found out that I was 5 weeks pregnant. My doctor wanted to send me to a perinatologist to assist in my care during my pregnancy because of my diabetes. When I was 11 weeks along I drove out to Pensacola for my first visit with the peri. After the ultrasound the doctor came in and told us that he was seeing an encephalocele on the baby. He explained to us that this was a Neural Tube Defect and meant that the skull had not closed and part of the baby's brain was growing outside of the skull. He said that he wanted to bring me back in 2 weeks for another ultrasound to see if there would be any changes. He said that if there weren't any changes we would have some very difficult decisions to make because this baby would not be compatible with life and he walked out of the room. Two weeks went by and we returned to the office and we were seen by a different doctor. After the ultrasound he took my hand and said "I'm so sorry, but we've confirned the diagnosis." They took us into a consultation room where they offered me my "choices". I could termnate or continue but if I chose to continue I needed to realize that if the baby made it to term and through the birth it would not live long after. It wasn't a choice for me, the only option was to continue and give God a chance to do His will. We didn't buy anything for the baby realizing that we would never bring her home with us. I was determined to enjoy whatever time God gave us with this baby. The months were long and difficult. We went to MANY appointments and watched as the baby grew and became more and more active.

The day after Thanksgiving we found out that we were having a girl. I knew then that her name HAD to be Faith because that was the ONLY thing getting me through the pregnancy. At 8 months we met a pediatric neurosurgeon who told us that she had treated many babies with encephaloceles and not to give up hope. Treatment was possible but would depend on Faith and the severity of her condition. We did decided that a c-section would be best and set the date for April 1st. We had not bought anything for the baby and were told that that was a wise decision because we could not know what would happen. As my father said, we enjoyed playing with her in the womb because we didn't think we'd get any other time with her. They told us all of the things that could be wrong with her such as deafness, blindness, paralysis, heart trouble, deformed limbs or organs, chromosonal problems, or even a state of vegitation. It was all in God's hands and we were trusting Him. A date for the c-section was set and we waited for April 1st.

After a very long and difficult pregnancy, Faith was born by c-section in the middle of a stormy April Fool's day. She came out breathing on her own and doing better than anyone imagined. She had brain surgery at 3 days old that lasted 4 hours. The encephalocele was reduced from 28cm to 12cm during the surgery. The remainder was left becase she has functioning brain and a main artery in it. Her chromosone tests came back normal!! She isn't paralized or deaf and none of her limbs are deformed. Her heart is in perfect condition as are the rest of her organs. She does have oral delays and difficulties and cannot take anything orally because she does not suck. Therefore, she also had surgery to have a G-tube put in so that we could feed her. They have told us that she is blind but that's not a problem for us. We are just thankful that we have her to hold and love at home with us. She is growing everyday and learning to pick up that head of hers. "A little Faith can bring BIG miracles!" Continue to pray for her!!
http://pg.photos.yahoo.com/ph/miraclefaith_2005/album?.dir=5620re2&.src=ph&store=&prodid=&.done=http%3a//photos.yahoo.com/ph//my_photos

http://pg.photos.yahoo.com/ph/miraclefaith_2005/album?.dir=e4f9re2&.src=ph&store=&prodid=&.done=http%3a//pg.photos.yahoo.com/ph/miraclefaith_2005/my_photos

Photobucket

iVillage Member
Registered: 10-23-2003
Wed, 09-13-2006 - 9:10pm
Hi there yes I remember reading about Faith's story.How have you both been doing?Thanks for coming back and retelling your story about your special little girl.She is growing up so fast.Oh my her 2nd b-day will be here before ya know it.Did I read a little while back I have a terrible memory that she was going to be having surgery soon?Like I said I have a bad memory.Welcome back
Lilypie 6th to 18th Ticker Lilypie 6th to 18th Ticker
iVillage Member
Registered: 08-20-2004
Thu, 09-14-2006 - 9:27am
They are starting the studying process to map a plan out for a cranial reconstruction. They are looking to expand her skull enough to put what little brain is outside the skull back into the skull. In the process they'll have to use portions of her ribs to graft and close the hole in the skull. It will be a while before we get to the surgery point but I'm anxious and nervous none the less!

Photobucket

iVillage Member
Registered: 06-06-2006
Sun, 09-17-2006 - 1:29pm

What a wonderful and inspiring story! She is an angel! All that gorgeous hair!! I feel that we parents of Special kids are blessed and exceptional!

Saara mom of Naim 7, Ahsan 6, Ilyaas 16 mo(CP,G-tube, CVI,HI), EDD 1/30/07