Faith's Story
(written March 2006 )
Faith is our ‘perfectly’ planned baby; we dated for 3yrs, married in 2001, finished school, found jobs, then BABY!
My pregnancy went well…typical symptoms, but well. It did become somewhat emotionally trying after we found out that both Morgan & I were carriers for the Cystic Fibrosis (CF) gene & that our baby had a 25% chance of having it. I would go in for routine ultrasounds so they could monitor the baby, which although was for a scary reason, was awesome to see her growing & find out how big she was. They did see echogenic (white) bowels, which can be a sign of CF, however they kept telling us it could also be ‘normal.’
At the time, we couldn’t agree on a name. The first sermon of the year at church was about renewed hope, & how God is forever Faithful. Romans 5 was noted, “Rejoice when you suffer because through that you will gain perseverance; & through perseverance, character; & character, hope.” That’s when it occurred to me that the name Faith was well suited for our baby. As I was struggling emotionally, it gave me peace to have some renewed hope & realize that if she had CF, then that was God’s plan & we would be ok; we have Faith in this. She is our gift.
She was born Friday 03/04/05 (easy day to remember), 8lbs 8oz, 20 1/2 inches long. You wouldn’t believe it based on her size, but she was 3 weeks early (definitely ready to see & be seen by the world). Almost immediately she was taken to NICU, due to breathing complications & a few other ‘preemie’ reasons. After a few hours, we named her Faith Marie D. Daily she improved greatly & was slowly weaned from the machines. We had tons of support & many visitors in the hospital, making the stay go by quickly. The staff could not possibly have been better either. Faith was in NICU from Friday until Tuesday when we were able to make a final break out of there. Although it wasn’t that long a time in comparison to others, I had a hard time with it and wasn’t able to go home until she came with us. At home, we were finally able to begin our joy of staring at her for hours.
Unfortunately, our fears were met when Faith was officially diagnosed with Cystic Fibrosis at 2 weeks old after the DNA test results came in. Fortunately, the diagnosis was at a very early age. She battled through pneumonia at 3 months of age, a few colds during the winter, & finished a round of antibiotics/extra breathing treatments for congestion in February, she’s doing well in terms of lung function & now much better in weight gain. We just got the news April 21st that she cultured Pseudomonas. Yikes! We'll now be doing inhaled treatments of TOBI in hopes of erradicating it. She’s a whopping 21lbs at 1 year! She sees a pulmonary specialist, gastrointestinal specialist & a CF team made up of a nurse, respiratory therapist, social worker & nutritionist; each every 3 months & we try to keep a rotating schedule so that she’s checked often.
On a normal day, without being sick, Faith has 7 medications. By looking at her, you’d never know she was any ‘different,’ or I’ll say, more special. Now & until there’s a cure for CF, every time she eats anything, she must take a little capsule filled with enzymes, to help her body absorb & digest milk & food, as she is pancreatic insufficient. She used to have extra special calories added to what she ate. We do chest physiotherapy, vigorously clapping on her back, chest & sides twice daily. She gets a breathing treatment via nebulizer machine twice daily, one is a long term anti-inflammatory & the other thins out the mucus. She takes an acid reflux medicine twice daily for reflux & to aid in absorption. She also takes a droplet of highly concentrated vitamins once daily so that her body gets what it needs to continue to grow. And this is all on the ‘good’ days...if she's sick, most of these are increased to what may seem an extreme. Yes, it is time consuming & difficult at times, but she is most definitely worth it!!!!!!!!
We joke that Faith is “advanced.” She’s been able to roll over to her back from only 5 ½ weeks old & sleeping through the night from 2.5 months! From a tiny infant it was obvious she was already SUCH a lover of life. When I would get her out of bed in the morning, she would be just SO excited & happy that she almost couldn’t contain herself. She loves to smile & wave at any stranger walking by & is the most spirited baby! Now she’s one year old & can sign for milk, eat with a baby fork, put a block in it’s correct size hole, play patty cake with the rolling & throwing in the pan, & if you ask “How old are you?” she’ll reply with her big pointer finger sticking up that she’s one. Or if you ask “How big is Faith?” you’ll get a huge smile & both arms way up in the air to proclaim that she’s ‘soooo big.’
“What can I do to help?” you ask…
I’m VERY open to answering questions, sharing or just talking about CF. I don’t know everything, nobody does yet, but I learn almost daily. Sure makes me glad I always enjoyed science, biology, anatomy & took so many courses of it in college!!!
Faith is my whole world. She is more to me than I could have ever imagined. I would give up my life without hesitation if it would give Faith a happy & healthy life. The good thing about all this is that she will grow up with a whole different view & perspective than you or I did. She will not take all the little things for granted, already she has taught me that. At such a young age, she already has such a spirit & zest for life. I know Faith WILL survive!
As my mother-in-law has told us “I do not know what the future holds, but I trust the one who holds the future. Now He is teaching us all trust such as we have never known before.”
Respectfully,
Stephanie
(proud mommy to Faith, loving wife to Morgan)
March 2006
Faith is our ‘perfectly’ planned baby; we dated for 3yrs, married in 2001, finished school, found jobs, then BABY!
My pregnancy went well…typical symptoms, but well. It did become somewhat emotionally trying after we found out that both Morgan & I were carriers for the Cystic Fibrosis (CF) gene & that our baby had a 25% chance of having it. I would go in for routine ultrasounds so they could monitor the baby, which although was for a scary reason, was awesome to see her growing & find out how big she was. They did see echogenic (white) bowels, which can be a sign of CF, however they kept telling us it could also be ‘normal.’
At the time, we couldn’t agree on a name. The first sermon of the year at church was about renewed hope, & how God is forever Faithful. Romans 5 was noted, “Rejoice when you suffer because through that you will gain perseverance; & through perseverance, character; & character, hope.” That’s when it occurred to me that the name Faith was well suited for our baby. As I was struggling emotionally, it gave me peace to have some renewed hope & realize that if she had CF, then that was God’s plan & we would be ok; we have Faith in this. She is our gift.
She was born Friday 03/04/05 (easy day to remember), 8lbs 8oz, 20 1/2 inches long. You wouldn’t believe it based on her size, but she was 3 weeks early (definitely ready to see & be seen by the world). Almost immediately she was taken to NICU, due to breathing complications & a few other ‘preemie’ reasons. After a few hours, we named her Faith Marie D. Daily she improved greatly & was slowly weaned from the machines. We had tons of support & many visitors in the hospital, making the stay go by quickly. The staff could not possibly have been better either. Faith was in NICU from Friday until Tuesday when we were able to make a final break out of there. Although it wasn’t that long a time in comparison to others, I had a hard time with it and wasn’t able to go home until she came with us. At home, we were finally able to begin our joy of staring at her for hours.
Unfortunately, our fears were met when Faith was officially diagnosed with Cystic Fibrosis at 2 weeks old after the DNA test results came in. Fortunately, the diagnosis was at a very early age. She battled through pneumonia at 3 months of age, a few colds during the winter, & finished a round of antibiotics/extra breathing treatments for congestion in February, she’s doing well in terms of lung function & now much better in weight gain. We just got the news April 21st that she cultured Pseudomonas. Yikes! We'll now be doing inhaled treatments of TOBI in hopes of erradicating it. She’s a whopping 21lbs at 1 year! She sees a pulmonary specialist, gastrointestinal specialist & a CF team made up of a nurse, respiratory therapist, social worker & nutritionist; each every 3 months & we try to keep a rotating schedule so that she’s checked often.
On a normal day, without being sick, Faith has 7 medications. By looking at her, you’d never know she was any ‘different,’ or I’ll say, more special. Now & until there’s a cure for CF, every time she eats anything, she must take a little capsule filled with enzymes, to help her body absorb & digest milk & food, as she is pancreatic insufficient. She used to have extra special calories added to what she ate. We do chest physiotherapy, vigorously clapping on her back, chest & sides twice daily. She gets a breathing treatment via nebulizer machine twice daily, one is a long term anti-inflammatory & the other thins out the mucus. She takes an acid reflux medicine twice daily for reflux & to aid in absorption. She also takes a droplet of highly concentrated vitamins once daily so that her body gets what it needs to continue to grow. And this is all on the ‘good’ days...if she's sick, most of these are increased to what may seem an extreme. Yes, it is time consuming & difficult at times, but she is most definitely worth it!!!!!!!!
We joke that Faith is “advanced.” She’s been able to roll over to her back from only 5 ½ weeks old & sleeping through the night from 2.5 months! From a tiny infant it was obvious she was already SUCH a lover of life. When I would get her out of bed in the morning, she would be just SO excited & happy that she almost couldn’t contain herself. She loves to smile & wave at any stranger walking by & is the most spirited baby! Now she’s one year old & can sign for milk, eat with a baby fork, put a block in it’s correct size hole, play patty cake with the rolling & throwing in the pan, & if you ask “How old are you?” she’ll reply with her big pointer finger sticking up that she’s one. Or if you ask “How big is Faith?” you’ll get a huge smile & both arms way up in the air to proclaim that she’s ‘soooo big.’
“What can I do to help?” you ask…
- DONATE: go to our home page & click on the Great Strides. You must know that research can’t be done without funding. We’d love to have you walk with us on May 6, too!
- Become an ORGAN DONOR by signing up www.donatelife.net. There are SO many CFers on the transplant list waiting for new lungs.
- PRAY: pray for Faith & others with CF to lead long, happy & healthy lives, pray that someone somewhere finds a cure for this horrible disease.
- Be thankful for what you have &
- MOST OF ALL, please don’t read through THIS far & not do something!
I’m VERY open to answering questions, sharing or just talking about CF. I don’t know everything, nobody does yet, but I learn almost daily. Sure makes me glad I always enjoyed science, biology, anatomy & took so many courses of it in college!!!
Faith is my whole world. She is more to me than I could have ever imagined. I would give up my life without hesitation if it would give Faith a happy & healthy life. The good thing about all this is that she will grow up with a whole different view & perspective than you or I did. She will not take all the little things for granted, already she has taught me that. At such a young age, she already has such a spirit & zest for life. I know Faith WILL survive!
As my mother-in-law has told us “I do not know what the future holds, but I trust the one who holds the future. Now He is teaching us all trust such as we have never known before.”
Respectfully,
Stephanie
(proud mommy to Faith, loving wife to Morgan)
March 2006
UPDATE ON FAITH: April 1, 2014
Faith is one amazing girl! She is growing up to be kind, patient, God-loving, smart and all around joyous! We are so grateful that she complies with her treatments, pills and routine. She was able to join a soccer team this year for the first time and is now in and awesome, supportive school for 3rd grade! She has a younger sister, Brooke, and a new baby brother or sister on the way! Because of the hard work by her, our family and her team, along with the latest meds and treatments, Faith has yet to be hospitalized! She's had a few illnesses that have caused it to come close, but as it nears, the meds start doing their job. We appreciate your love and support!
Faith is one amazing girl! She is growing up to be kind, patient, God-loving, smart and all around joyous! We are so grateful that she complies with her treatments, pills and routine. She was able to join a soccer team this year for the first time and is now in and awesome, supportive school for 3rd grade! She has a younger sister, Brooke, and a new baby brother or sister on the way! Because of the hard work by her, our family and her team, along with the latest meds and treatments, Faith has yet to be hospitalized! She's had a few illnesses that have caused it to come close, but as it nears, the meds start doing their job. We appreciate your love and support!