Faith's Mom's Blog

November 30 is Newborn Heart Defect Screening Awareness Day . I think it is very important to spread this awareness, especially since congenital heart defects (CHD) are the number one birth defect in babies. CHD affects 8 out of every 1,000 newborns and is responsible for more deaths in the first year of life than any other birth defect. A simple screening, which is done via pulse oximetry done within the first 24 hours of the baby's life, could prevent such deaths from happening. One such death was a five-day old baby named Cora .  I was born with a congenital heart defect and nobody knew until I was about five or six months old. My mom began noticing that the simplest act of eating from my bottle completely wore me out. And when my lips and fingernails began to have a bluish tinge to them, she knew something was very wrong. Unfortunately at that time we lived on an Indian reservation in Wolf Point, Montana so there weren't a lot of specialists in the area. The closest one

Me and my little family of three have a Thanksgiving tradition of going out for thanksgiving dinner on our own. This year, though, we invited another family of three to join as as they had done years ago after we first moved to Mandan. We had met this family at a church in Mandan and have recently reconnected with them as we all now go to New Life Church. So thankful to be reconnected with this wonderful family! So today we headed out to one of the buffets at a local hotel. I was looking so forward to eating a delicious turkey dinner and having pumpkin pie with whip cream for dessert. As we walked into the dining room, however, the first thing I noticed was that the pieces of pumpkin on the dessert tables were not topped with whip cream. I wasn't going to complain though, as I didn't want to appear to be ungrateful on Thanksgiving of all days. As we sat around the table, enjoying our delicious turkey dinner I couldn't help but notice that nobody was taking the bare

We made it to Saturday. It has been quite the challenging week.. While it started out great, it just seemed to downhill as the days went by. After having four days off from school, Faith got her haircut on Monday evening followed by a trip to the Healing Rooms where they were celebrating their 10 year anniversary. Me, Rob and Faith all went in for prayer together and Faith received the scripture, "Then shall your light break forth as the morning, and your health shall spring forth speedily: and your righteousness shall go before you; the glory of the LORD shall be your rear guard." Isaiah 58:8. They always write down the scripture verse for us on a piece of paper so we can take it with is. Faith was so excited, she grabbed the piece of paper and yelled, "I can't wait to show Lola my scripture!" Lola is one of the directors of the Healing Rooms and was sitting at the front desk that day. Faith with Bob and Lola - directors of the Healing Rooms of the No

It seems we have won the battle over Faith getting up and getting ready for school in the mornings. She is no longer protesting and wakes up in the morning excited to bring a "special guest" to school. Last week she pretended to get Clifford the Big Red dog ready for school but he couldn't fit in our van so he had to ride on top. She also talks about how when she gets to school she is going to help take care of one of her friends who is also in a wheelchair. Faith has been doing great getting up and ready for school in the mornings! A few things are helping Faith with her morning routine. One she is getting more rest and not feeling so fatigued throughout the week as she is only going half-days on Tuesdays and Thursdays. Another is that we have been feeding her Pediasure with 1.5 times more calories that what she has gotten before. This is helping with both her energy and her weight. Rob took her in to get weighed last week and she has gained almost a pound since get

For Faith's birthday this year, we decided to keep it pretty low-key. And even though we really didn't do a whole lot, Faith had a very fun-filled birthday. On Thursday, she took her favorite snack - goldfish crackers - to school to share with her classmates. Then after school she got to play her new Wheel of Fortune game on the PS3 with daddy. This is what I found when I came home from work that evening: Of course Faith wanted to play her new game with me, which I very happily did. During all of this we took a little break to talk to Faith's Grandparents from Canada who called to wish her a Happy Birthday. We opened her presents from them while both Grandmother and Grandfather were on speaker phone. Friday evening was another night of playing Wheel of Fortune then on Saturday, we finally had a chance to have birthday cake, for which Grandma came over. We also opened some cards from her aunties and their families. We've definitely had a great three days of celebr

It is so hard to believe that it is already that time of the year - time for parent-teacher conferences.  I don't know why but I always get a little emotional at these meetings. I think it might be due to the fact that as Faith gets older it becomes more apparent that Faith does not have the same skills as her classmates - and I become very aware of her disability. In fact, due to a new grading system, Faith is probably going to be graded as a first grader instead of a third grader. But at the same time I am so proud of Faith for how well she is doing. Faith at school with her dad. Those around her at school seem to be noticing a difference in her wanting to be at school rather than asking when she can go home. It seems to correspond to the time that I began staying home in the mornings to help her get ready for school.  I'm not exactly why this is because she still fights some mornings about not wanting to go to school but I'm glad to know that once she gets there

It's hard to believe that it was nine years ago today I was taken by air-ambulance from the hospital in Williston to the Mayo Clinic in Rochester Minnesota. Faith was very unexpectedly trying to make her way into the world 14 weeks early. The doctors and staff in Williston knew they did not have the expertise in dealing with a mom with a complex heart condition having a baby born so prematurely. I had been planning on having Faith in Rochester but not this soon! After all, my due date wasn't until January 6th. After getting to Rochester, I was in the hospital for five days hooked up to a baby monitor. Faith seemed to be doing well and I was no longer going into preterm labor. Although I wanted to just go back home, the doctors thought it would be wise for me to stick around Rochester, just in case. The TravelLodge became my temporary home. Faith in the NICU in Rochester, Minnesota where she was born Rob had been going back and forth between Rochester and Watford City. An