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Well I'm glad you asked! (Thank you self!) ;)
Faith was not the name we had orginally planned on. We had many other top contenders, however after MANY problems with our pregnancy (and many docotrs telling us we were going to miscarrry) we decided our little miracle needed a name that meant something, so Faith it was.
As far as the middle name goes we did not have a middle name picked out by the time Faith came. We thought we'd have a few extra months to decide! A few days after she was born a representative from the hospital came up and wanted us to fill out the paper work for Faith's birth certificate. She was going to come back in one hour. This was also the day of Faith's PDA ligation (heart surgery) and we were a mess. In the first few days of Faith's life Brian was super daddy- heading back and forth from the NICU to my room. I was so proud of him so I gave him the responsibility of picking Faith's middle name. ;) I had wanted to name her Faith Elizabeth or Faith Noel, but Brian decided on Edona, and I am glad he did.
Edona is an Albanian name. Before Faith was born for the past three summers Brian and I traveled to Kosovo to aid in war relief.We worked primarily with Albanian widows and their children. There were several "Edonas" there- the name is very common there (much like a name like Sarah is here). The pronunciation is "A-DOH-NA" and it means "loving" we didn't know this at the time, but it fit her well. When our friends in Kosovo found out our first born had an Albanian name in it they were very honored. We cannot wait to take Faith there someday!
Saturday, July 19, 2008
Thursday, May 29, 2008
Questions about Nutrition
Q: Does Faith eat by mouth yet? What does she eat?
A: Despite our best efforts and hours upon hours of speech and occupational therapy sessions focused on getting Faith to take her feeds orally, she has stood her ground in saying 'ENOUGH!!!!!" The odd thing is instead of getting better she has gotten worse. During speech therapy we'd put Faith in her high chair and let her play with baby food (whcih she never liked..the texture of the food was too much for her...) After a while we put a little dab on our finger and put it on her lips. This puts Faith in distress and she starts gagging. It's even gotten to the point where Faith freaks out when she is put in her high chair because she associates it with feeding. After several bronchs it's been determined that her problem isn't all oral aversion related. (She has developed an oral aversion to food b/c of all of the negative stimulation she has had in her life...) her airway is still really swollen, which makes it difficult for her to swallow. We have been advised to hold off on the feeding thing until she is medically ready. This does not mean we've given up on the eating thing, we are getting her ready in other ways like showing her positive stimulation around her mouth.
So Faith takes her nutrition through a gastronomy tube placed in her stomach. It's really kinda cool. For those of you veterans that have been following this blog since the beginning you may remember us freaking out at the thought of our child receiving her nutrition from a tube in her belly. The g-tube is one of the best things ever to happen to Faith. It put so much stress off of her and us. If we knew then what we knew now it wouldn't have been such a delima in deciding to do it (hind sight is 20/20 w/everything huh?)
The g-tube has become such a part of her and us that we don't even think about how it's not the norm. Whenever I see a baby her age eating by mouth it all seems very strange to me (you mean they can eat ice cream?! Really?!)
To be honest the fact that Faith doesn't eat doesn't bother us either. It seems to really get other people though- whenever people ask about her it's often the top concern. We know Faith will eventually eat ( and if not...so what..) like everything she will do it in HER timing and on HER terms (such the woman, huh?)
Oh yeah and to answer the second half of the question Faith receives 180ML of a formula called complete. The formula is a mix of chicken, cranberries, etc. She gets feed over 45 minutes every 4 hours. At night she gets one 2am feed (and as you know sometimes the crib receives a feeding too!) ;)
A: Despite our best efforts and hours upon hours of speech and occupational therapy sessions focused on getting Faith to take her feeds orally, she has stood her ground in saying 'ENOUGH!!!!!" The odd thing is instead of getting better she has gotten worse. During speech therapy we'd put Faith in her high chair and let her play with baby food (whcih she never liked..the texture of the food was too much for her...) After a while we put a little dab on our finger and put it on her lips. This puts Faith in distress and she starts gagging. It's even gotten to the point where Faith freaks out when she is put in her high chair because she associates it with feeding. After several bronchs it's been determined that her problem isn't all oral aversion related. (She has developed an oral aversion to food b/c of all of the negative stimulation she has had in her life...) her airway is still really swollen, which makes it difficult for her to swallow. We have been advised to hold off on the feeding thing until she is medically ready. This does not mean we've given up on the eating thing, we are getting her ready in other ways like showing her positive stimulation around her mouth.
So Faith takes her nutrition through a gastronomy tube placed in her stomach. It's really kinda cool. For those of you veterans that have been following this blog since the beginning you may remember us freaking out at the thought of our child receiving her nutrition from a tube in her belly. The g-tube is one of the best things ever to happen to Faith. It put so much stress off of her and us. If we knew then what we knew now it wouldn't have been such a delima in deciding to do it (hind sight is 20/20 w/everything huh?)
The g-tube has become such a part of her and us that we don't even think about how it's not the norm. Whenever I see a baby her age eating by mouth it all seems very strange to me (you mean they can eat ice cream?! Really?!)
To be honest the fact that Faith doesn't eat doesn't bother us either. It seems to really get other people though- whenever people ask about her it's often the top concern. We know Faith will eventually eat ( and if not...so what..) like everything she will do it in HER timing and on HER terms (such the woman, huh?)
Oh yeah and to answer the second half of the question Faith receives 180ML of a formula called complete. The formula is a mix of chicken, cranberries, etc. She gets feed over 45 minutes every 4 hours. At night she gets one 2am feed (and as you know sometimes the crib receives a feeding too!) ;)
Wednesday, May 28, 2008
We were recently at a party with Faith. This was the first time we had gone anywhere in a social setting. What surprised me wasn't the reactions we got from people, or the curious glares, it was how inquisitive the children who saw Faith were. It's like they were drawn to her. They gathered around her asking great questions while the adults in the room uncomfortably shuffled around us. When you have a child with as much equipments as Faith has it's only natural to look and wonder. I remember the first time I saw a person with a trach I was about 10 years old. I remember being very scared when a man with a funny voice and a hole in his neck handed me our order at KFC. I had lots of questions, but unlike the children we encountered on Saturday at the party I was afraid to ask.
We love it when people ask questions about Faith. As a parent whenever anyone shows interest in your child you take it as a compliment. Because we've become immersed in the medical world this past year sometimes we assume that everyone else around us is as well.
We know this is not the case so that's why we started this section in the blog. If there's every something you wanted to know about Faith, our family, or our world just ask away! No question is too taboo for us (believe me...the 9 year olds covered them all!!!)
We love it when people ask questions about Faith. As a parent whenever anyone shows interest in your child you take it as a compliment. Because we've become immersed in the medical world this past year sometimes we assume that everyone else around us is as well.
We know this is not the case so that's why we started this section in the blog. If there's every something you wanted to know about Faith, our family, or our world just ask away! No question is too taboo for us (believe me...the 9 year olds covered them all!!!)
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