Boston is having a good day -- his labs came back with good levels. His protein to creatinine ratio in his urine is 3.69 to 1. Congenital nephrosis is considered to be anything above 3 to 1. Yesterday it was 7 to 1 and the day before it was 5 to 1. The doctors told us to not get too excited because the ratio can fluctuate from day to day and we are looking for trends, not snapshots. But for today, his ratio is good. Let's pray that tomorrow it will be good as well.
He had lots of good wet diapers during the night and so we no longer need to supplement him with a bottle after he is done eating.
He gained weight since yesterday -- just about 40 grams, but that is moving in the right direction. He had been down about 8% from his birth weight.
His protein in his blood is still normal. It is 3.5, which is the bottom of normal. It was 3.4 then 3.8 then 3.6 and now 3.5 -- still in the good range. If his blood protein gets too low then he will start to swell which will cause problems. Even if he has protein in his urine, if he still has a normal level of protein in his blood then he will not have the complicated side effects.
His immune system levels were good -- normal white blood cell count, etc.
The only number we are still watching is his bilirubin level. This is the number that tells us if he is still jaundiced. His number went up from yesterday and so he will be on the blanket with the light for at least another day, maybe two. His number is not awful, just high, and so they don't have to take any more drastic measures than that. It is a blessing that he is sleeping lots and doesn't mind being on the bed. We are so lucky that he is a sweet, content baby. He sleeps for three hours, eats and smiles at me, and then goes back to sleep to repeat the cycle.
It's been quiet today because I've asked people not to visit. Boston is doing great and I wouldn't mind visitors, but the Intensive Care Nursery is not a very visitor friendly place. This morning there were two emergencies with two other babies near Boston and it was like watching drama tv -- when it was all over the other members of the staff were telling baby's nurse how she had saved his life. She was visibly shaken by the ordeal. It was amazing to see how wonderful the staff is and how they are able to handle everything in a crisis situation.
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Boston Ethan Preston
Boston was born on Feb. 3, 2009. He is growing like a champ and is doing well. After a week in Children's Mercy, his testing for congenital nephrosis is ongoing as we await the results of the second round of genetic tests. Until then, his diagnosis is merely that he has protein in his urine. For info on how you can help see the Feb. 17 entry.
For more information on congenital nephrosis and Pierson Syndrome, see the September 8 and October 5 entries.
For more information on congenital nephrosis and Pierson Syndrome, see the September 8 and October 5 entries.
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2009
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February
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- More Pictures
- Update to Volunteering/How Can You Help?
- Changed Diagnosis
- On our way to Michelin Baby #2
- Clark and Boston: Brotherly Love
- Home!
- Blessed Be the Name of the Lord
- He must be laughing at the item of turning into t...
- Stable on Day 5
- Boston on 2-7
- A Few of My Favorite Things...
- A Good Day
- Day 3 - Friday
- Taken on 2-6Taken on 2-5
- More Pictures
- The testing begins...
- Baby Boston Ethan Preston was born at 11:15 pm on ...
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February
(17)
Prayers and Accompanying Bible Verses
Here are the prayers we have listed and an accompanying bible verse to guide you in praying:
Prayer: That Sarah and Brian will have God's peace that passes all understanding as they love and care for Clark and Boston.
Verse: Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Philippians 4:6-7)
Prayer: That we will be able to teach Boston how much God loves him and raise him to know Jesus as his Lord and Savior.
Verse: For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life. (John 3:16)
Prayer: That we will focus on the joys of each day and be reassured that “Today Boston is GREAT” and not borrow the unknown sorrows of the future.
Verse: Do not worry about your life, but seek first God’s kingdom and his righteousness, and all these things will be given to you as well. So do not worry about tomorrow, for tomorrow will take care of itself. (Matthew 6:25, 33-34a)
Prayer: That Boston will only have one broken gene, not two, and that he be born normal and healthy with the correct production of laminin.
Verse: The Lord delights in every detail of our lives. (Psalm 37:23b )
Prayer: That this experience will strengthen our relationship with God and be an opportunity for us to share our faith with others.
Verse: (Jesus said) “My grace is sufficient for you, for my power is made perfect in weakness." So I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12.9-10)
Prayer: That every day we will “Live, Love, Forgive, and Never Give Up.”
We live; we love;We forgive and never give up‘Cuz the days we are given are gifts from aboveand today we remember to live and to love.“We Live” lyrics by Superchick
Prayer: That Brian or Sarah would be a match for the transplant.
Verse: Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Proverbs 3:5-6)
Prayer: That Sarah will be strengthened with all of God's glorious power so she will have all of the endurance and patience she needs to finish the pregnancy with a cheerful spirit.
Answered: Within a day after posting this request, Sarah felt uplifted and strengthened by God’s power. She was able to faithfully wait out the rest of the pregnancy. Sarah had an easy labor and delivery and recovered quickly.
Prayer: That Boston would be completely healed and that he will be born healthy with no complications; That Boston be healed completely; That he has a mild form of disease that does not affect his functionality.
Answered: In God’s wisdom, Boston was born with a body that compensates for an extra loss of protein in such a way that he has no other complications. Because of this, he is currently not classified as having any form of nephrotic syndrome. This is an impossible miracle that we could not have understood nor prayed for, but we are exceptionally grateful for God’s understand of the complex workings of our bodies.
Prayer: That Boston’s kidneys will continue to improve and show no sign of “texture” or “brightness” on the ultrasound.
Answered: Boston’s kidneys improved and the ultrasound after Boston was born showed no abnormalities: the kidneys were formed and function correctly, although they do not filter as expected.
Prayer: That he will grow quickly and gain weight well in order to reach transplant size.
Answered: This prayer has been answered in abundance. Boston made it to almost 39 weeks and weighed in at 8 pounds, 3 ounces. At one month he weighs 11 pounds, 7 ounces. The normal weight gain range for a breastfed baby is 5 to 8 ounces per week, so he had a target weight gain of 20 to 32 ounces. He gained 52 ounces! This weight gain is his protection against any future problems and brings him closer to a transplant weight, should he ever need one.
Prayer: That Sarah and Brian will be able to prepare for the worst without losing perspective on the big picture.
Answered: We found this to be much harder than we anticipated, especially in the first few days of Boston’s life when we were told that he was losing protein and to expect him to get sick. We know, however, that this preparation would have been impossible without the knowledge of God and our relationship with Jesus.
Prayer: That the doctors will find a cause for his ridiculously high AFP and be able to treat it accordingly.
Answered: The cause of Boston’s high AFP was the protein that he is passing into his urine. Miraculously, however, it requires no treatment at this time.
Prayer: That the level of his amniotic fluid will stay normal in order to allow his lungs to develop and to reassure us that he does not have complications.
Answered: this was answered in abundance: Boston’s amniotic fluid stayed normal until the final weeks of his gestation, allowing his lungs to fully develop.
Prayer: That he will have use of his eyes and not be blind.
Answered: Boston’s eyes are normal at this time and he is meeting all of the development markers for focus and tracking.
Prayer: That his muscles will be strong and his brain alert.
Answered: Boston has a strong vice grip in his hands. His head and neck strength are increasing every day and he is ahead of the curve on being able to support his head on his own. He is also advancing in his head and shoulder strength during his tummy time.
Prayer: That Sarah will be able to learn and understand about the disease and treatments.
Answered: Through the support and encouragement of the medical team, Sarah was able to gain all the information necessary to converse with the doctors in a knowledgeable manner about Boston’s condition. It was a compliment to her to be regarded as an “expert” on Boston’s condition.
Prayer: That Sarah and Brian will have God's peace that passes all understanding as they love and care for Clark and Boston.
Verse: Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Philippians 4:6-7)
Prayer: That we will be able to teach Boston how much God loves him and raise him to know Jesus as his Lord and Savior.
Verse: For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life. (John 3:16)
Prayer: That we will focus on the joys of each day and be reassured that “Today Boston is GREAT” and not borrow the unknown sorrows of the future.
Verse: Do not worry about your life, but seek first God’s kingdom and his righteousness, and all these things will be given to you as well. So do not worry about tomorrow, for tomorrow will take care of itself. (Matthew 6:25, 33-34a)
Prayer: That Boston will only have one broken gene, not two, and that he be born normal and healthy with the correct production of laminin.
Verse: The Lord delights in every detail of our lives. (Psalm 37:23b )
Prayer: That this experience will strengthen our relationship with God and be an opportunity for us to share our faith with others.
Verse: (Jesus said) “My grace is sufficient for you, for my power is made perfect in weakness." So I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12.9-10)
Prayer: That every day we will “Live, Love, Forgive, and Never Give Up.”
We live; we love;We forgive and never give up‘Cuz the days we are given are gifts from aboveand today we remember to live and to love.“We Live” lyrics by Superchick
Prayer: That Brian or Sarah would be a match for the transplant.
Verse: Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Proverbs 3:5-6)
Prayer: That Sarah will be strengthened with all of God's glorious power so she will have all of the endurance and patience she needs to finish the pregnancy with a cheerful spirit.
Answered: Within a day after posting this request, Sarah felt uplifted and strengthened by God’s power. She was able to faithfully wait out the rest of the pregnancy. Sarah had an easy labor and delivery and recovered quickly.
Prayer: That Boston would be completely healed and that he will be born healthy with no complications; That Boston be healed completely; That he has a mild form of disease that does not affect his functionality.
Answered: In God’s wisdom, Boston was born with a body that compensates for an extra loss of protein in such a way that he has no other complications. Because of this, he is currently not classified as having any form of nephrotic syndrome. This is an impossible miracle that we could not have understood nor prayed for, but we are exceptionally grateful for God’s understand of the complex workings of our bodies.
Prayer: That Boston’s kidneys will continue to improve and show no sign of “texture” or “brightness” on the ultrasound.
Answered: Boston’s kidneys improved and the ultrasound after Boston was born showed no abnormalities: the kidneys were formed and function correctly, although they do not filter as expected.
Prayer: That he will grow quickly and gain weight well in order to reach transplant size.
Answered: This prayer has been answered in abundance. Boston made it to almost 39 weeks and weighed in at 8 pounds, 3 ounces. At one month he weighs 11 pounds, 7 ounces. The normal weight gain range for a breastfed baby is 5 to 8 ounces per week, so he had a target weight gain of 20 to 32 ounces. He gained 52 ounces! This weight gain is his protection against any future problems and brings him closer to a transplant weight, should he ever need one.
Prayer: That Sarah and Brian will be able to prepare for the worst without losing perspective on the big picture.
Answered: We found this to be much harder than we anticipated, especially in the first few days of Boston’s life when we were told that he was losing protein and to expect him to get sick. We know, however, that this preparation would have been impossible without the knowledge of God and our relationship with Jesus.
Prayer: That the doctors will find a cause for his ridiculously high AFP and be able to treat it accordingly.
Answered: The cause of Boston’s high AFP was the protein that he is passing into his urine. Miraculously, however, it requires no treatment at this time.
Prayer: That the level of his amniotic fluid will stay normal in order to allow his lungs to develop and to reassure us that he does not have complications.
Answered: this was answered in abundance: Boston’s amniotic fluid stayed normal until the final weeks of his gestation, allowing his lungs to fully develop.
Prayer: That he will have use of his eyes and not be blind.
Answered: Boston’s eyes are normal at this time and he is meeting all of the development markers for focus and tracking.
Prayer: That his muscles will be strong and his brain alert.
Answered: Boston has a strong vice grip in his hands. His head and neck strength are increasing every day and he is ahead of the curve on being able to support his head on his own. He is also advancing in his head and shoulder strength during his tummy time.
Prayer: That Sarah will be able to learn and understand about the disease and treatments.
Answered: Through the support and encouragement of the medical team, Sarah was able to gain all the information necessary to converse with the doctors in a knowledgeable manner about Boston’s condition. It was a compliment to her to be regarded as an “expert” on Boston’s condition.
1 comment:
What beautiful pictures...I'll bet Boston looks adorable in his mini-sunglasses under his bili-light. :) Our prayers are with you daily...keep the updates coming!
Lindsey Carlson
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