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Seth was comfy and doing well (for Seth) when I called tonight, on 54% oxygen. He doesn't have another assessment until the morning, so he can get a good rest tonight. Thanks for praying!
Friday, October 5, 2012
Two more pix of Gracie
She's so tiny! Please keep praying she gains weight. (Recognize the onesie, Christine?)
Seth was comfy and doing well (for Seth) when I called tonight, on 54% oxygen. He doesn't have another assessment until the morning, so he can get a good rest tonight. Thanks for praying!
Seth was comfy and doing well (for Seth) when I called tonight, on 54% oxygen. He doesn't have another assessment until the morning, so he can get a good rest tonight. Thanks for praying!
Volunteers needed!
As you might imagine, in the coming weeks there will be a huge need for volunteers to help with the baby(ies) at home while the other babies are still in the NICU. Another important need will be for help overnight as it is critical that they get as much sleep/rest as possible.
Many of you have already let me know that you would like to help. I sent an e-mail on Tuesday, October 2 with detailed information regarding the volunteers. If you could please respond and let me know which shift you are able to sign up for so that I can begin a schedule of volunteers. If you are unable to commit to a specific time slot, that is fine - there will be shifts you can sign up for on Lotsa Helping Hands (once you confirm the other information to me that I sent in the email).
If you did not receive that email, please let me know and I will send it to you.
Thank you,
Stacey Walter
jonesquints@yahoo.com
Many of you have already let me know that you would like to help. I sent an e-mail on Tuesday, October 2 with detailed information regarding the volunteers. If you could please respond and let me know which shift you are able to sign up for so that I can begin a schedule of volunteers. If you are unable to commit to a specific time slot, that is fine - there will be shifts you can sign up for on Lotsa Helping Hands (once you confirm the other information to me that I sent in the email).
If you did not receive that email, please let me know and I will send it to you.
Thank you,
Stacey Walter
jonesquints@yahoo.com
Update/Pictures Friday Oct 5th
Hi again,
Seth handled his transfer to Children's very well, praise God, and appears to like it there. :) He is in his own room with the top off his isolette, so it's more of a bassinet set-up. We took in pictures, blankets, hats, preemie shirts, etc. so he could have a more personalized space, see our smiling faces when we can't be there, and look extra cute. (Thanks Sarah, Shauna, Doris, Sandy, Aunt Joanne, Manns, Joan, Limbo Links ladies, Arlene, Carly, and others I know I am forgetting! He's so big he's already outgrown the hats from some of you!) We also have the recording of my singing, talking and praying to leave there for his listening pleasure. He could only tolerate about 10 minutes of time with us today, but he really LOVED the time initially as evidenced by his oxygen saturation going up to 100% without the nurse touching any settings on his oscillator. After the 10 minutes he started de-saturating and went to sleep, so he was politely ushering us out. :) He looks great, so that was encouraging to us.
The comprehensive echocardiogram reveals a real answer to prayer: his pulmonary hypertension is being effectively treated without at all enlarging his PDA (which is just classified as "trivial"). The blood flow around his heart and lungs is not being affected by either issue currently, as I understand it. Oh, I hope and pray God heals him! The doctors are going to start weaning his nitric oxide (the treatment for pulmonary hypertension) very gradually and see how he does using repeat echocardiogram investigations.
His lungs are still very sick, of course, necessitating the heavy dependence on the oscillator, but we're grateful they've been able to wean the settings some. He still requires a lot of pressure to keep his lung tissue open, likely due to the surfactant gene mutation as well as the scarring that's already occurred due to oxygen and machine use. So the focus is to treat the lungs and wait and hope he can grow faster than this mutation and injury can hold him back. He's now 5 lbs 1.5 oz!
The other kids are doing well. Will had to be put back on cannula because he wasn't able to keep his oxygen saturations in the 90%s without a small amount of oxygen, and now that he's such a big boy he needs more oxygen for his growing body! He's 6 pounds 4 ounces. Gracie is 3 lb 12 oz, David is 4 lb 10 oz, Marcie is 4 lb 9 oz.
Gracie and Marcie are still having periods during which they forget to breath and drop their heart rate. We pray they outgrow that soon. Both are still on high-flow cannula and a bit of oxygen, Gracie more than Marcie. David is the only baby not on any breathing assistance at all. He's also the best eater, although the past few days he's not been the best nurser, despite starting out so eager. Will wins the nursing prize, hands-down! David loves his bottle too much, but honestly it might be nice to have babies that prefer the bottle. It would be hard if all were clamoring for my attention. :} Will hears my voice and starts rooting around. So cute!
The other babies are such a blessing to hold and cuddle at a time when I can't hold and cuddle Seth much at all. That doesn't take away our sadness about Seth, of course, since we only have one Seth and love him as dearly as we do his siblings, but at least there is lots of outlet for my maternal cuddle instinct and Gavin's desire to hold his kiddos. He's a great dad! He's pretty nuts about the babies. :) He's also incredibly involved with Isaac, playing with, reading to, and parenting him, all of this in addition to working parttime at the Center near us. He loves having the chance to labor with his hands and get projects done for various departments there. I am very proud of him and grateful for him!
Our oldest son won Student of the Month last night at exactly the same time as our "youngest" son was being transferred to Children's Medical Center for more intensive evaluation. What a strange mixed day of sadness and joy. We are SO proud of Isaac, and he is so proud of being the big brother . . . times 5! Thanks for the awesome shirt, Lynn! He wanted to wear it again today. :)
I'd better end this very long post. Thanks for caring, reading and praying. We'll keep you posted as able!
Love in Christ,
Carrie
Seth handled his transfer to Children's very well, praise God, and appears to like it there. :) He is in his own room with the top off his isolette, so it's more of a bassinet set-up. We took in pictures, blankets, hats, preemie shirts, etc. so he could have a more personalized space, see our smiling faces when we can't be there, and look extra cute. (Thanks Sarah, Shauna, Doris, Sandy, Aunt Joanne, Manns, Joan, Limbo Links ladies, Arlene, Carly, and others I know I am forgetting! He's so big he's already outgrown the hats from some of you!) We also have the recording of my singing, talking and praying to leave there for his listening pleasure. He could only tolerate about 10 minutes of time with us today, but he really LOVED the time initially as evidenced by his oxygen saturation going up to 100% without the nurse touching any settings on his oscillator. After the 10 minutes he started de-saturating and went to sleep, so he was politely ushering us out. :) He looks great, so that was encouraging to us.
The comprehensive echocardiogram reveals a real answer to prayer: his pulmonary hypertension is being effectively treated without at all enlarging his PDA (which is just classified as "trivial"). The blood flow around his heart and lungs is not being affected by either issue currently, as I understand it. Oh, I hope and pray God heals him! The doctors are going to start weaning his nitric oxide (the treatment for pulmonary hypertension) very gradually and see how he does using repeat echocardiogram investigations.
His lungs are still very sick, of course, necessitating the heavy dependence on the oscillator, but we're grateful they've been able to wean the settings some. He still requires a lot of pressure to keep his lung tissue open, likely due to the surfactant gene mutation as well as the scarring that's already occurred due to oxygen and machine use. So the focus is to treat the lungs and wait and hope he can grow faster than this mutation and injury can hold him back. He's now 5 lbs 1.5 oz!
The other kids are doing well. Will had to be put back on cannula because he wasn't able to keep his oxygen saturations in the 90%s without a small amount of oxygen, and now that he's such a big boy he needs more oxygen for his growing body! He's 6 pounds 4 ounces. Gracie is 3 lb 12 oz, David is 4 lb 10 oz, Marcie is 4 lb 9 oz.
Gracie and Marcie are still having periods during which they forget to breath and drop their heart rate. We pray they outgrow that soon. Both are still on high-flow cannula and a bit of oxygen, Gracie more than Marcie. David is the only baby not on any breathing assistance at all. He's also the best eater, although the past few days he's not been the best nurser, despite starting out so eager. Will wins the nursing prize, hands-down! David loves his bottle too much, but honestly it might be nice to have babies that prefer the bottle. It would be hard if all were clamoring for my attention. :} Will hears my voice and starts rooting around. So cute!
The other babies are such a blessing to hold and cuddle at a time when I can't hold and cuddle Seth much at all. That doesn't take away our sadness about Seth, of course, since we only have one Seth and love him as dearly as we do his siblings, but at least there is lots of outlet for my maternal cuddle instinct and Gavin's desire to hold his kiddos. He's a great dad! He's pretty nuts about the babies. :) He's also incredibly involved with Isaac, playing with, reading to, and parenting him, all of this in addition to working parttime at the Center near us. He loves having the chance to labor with his hands and get projects done for various departments there. I am very proud of him and grateful for him!
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| David in his adorable hat from Shauna |
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| Marcie smiling for the camera |
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| Will is done eating and supposed to go to sleep now |
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| Precious Seth |
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| Gracie-kins |
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| Isaac LOVES his teacher! |
I'd better end this very long post. Thanks for caring, reading and praying. We'll keep you posted as able!
Love in Christ,
Carrie
Thursday, October 4, 2012
Seth: surfactant deficiency mutation
Hi everyone,
It's taken several hours to process enough to be able to sit down and write this. We know many of you will pray and all of you care, so we want to let you know that Seth has a heterozygous [on one chromosome only, not both] genetic mutation (ABCA3) likely affecting his lungs' ability to properly manufacture surfactant. Surfactant is critical for breathing as it allows the lungs to continue inflating properly. How much of the lung disease is due to surfactant deficiency and how much is due to his prematurity and resulting need for machines and oxygen, we don't know, but it's likely that the genetic mutation is at least exacerbating his condition. An ABCA3 mutation on both chromosomes (homozygous; from mom and dad) is often fatal. However, given that Seth's mutation is only on one chromosome (heterozygous), we don't know where he falls in the spectrum of disease. Is he one of those who will do better and grow lung tissue fast enough to compensate for both the machine/oxygen damage and genetic mutation? Obviously he is producing SOME surfactant, or he would not have survived at all. (As one doc said a couple weeks ago, he would bet Seth did not have a surfactant deficiency mutation because he wasn't sick enough.) Or is he one of the babies who will ultimately lose the battle, despite all the support and treatment the hospital can give him? We have no way of knowing. We do know Who wrote the book of Seth's life before one of his days came to be, though. (Psalm 139) That doesn't mean this isn't very difficult and sad, especially the thought of how long he could be in the NICU and how painful it will be if there comes a time when we turn off the machines and say goodbye.
Needless to say, I cried a fair amount during the meeting with the neonatologists, neonatal nurse practitioner, and nurses today. My crying can't help Seth, though, and could hurt him (and the other precious babes) because it wears me out! I need to be in "top form" to provide the nourishment and love he and his siblings need, as well as continue to mother Isaac here at home. We will be busier than ever now that we will have a child at Children's Medical Center, others at St. Paul's for a few more weeks, still others coming home soon (Lord willing), plus Isaac. So this is a plea for any additional volunteers, especially those who can commit longterm and those who have experience with nursing. Volunteers, including those who can help keep home from falling down around our ears, will enable us to be with Seth as he grows increasingly aware of his surroundings and needs increasing amounts of interaction with his parents, grandparents and environment and/or as he grows increasingly sick. We're in a wait and see period right now.
Seth still has a PDA and the pulmonary hypertension, but the blood flow through the PDA is the reverse of what they would expect given his pulmonary hypertension, so that's perplexing. He will undergo very extensive imaging tonight or tomorrow morning. They may decide to ligate the PDA despite how risky the surgery would be given his current poor lung condition. They may add another drug to the nitric oxide to ramp up treatment of the pulmonary hypertension. It's the tightrope walk again. We continue to pray for wisdom for the medical staff.
To sum up, in the specialist's words, Seth is very sick and there is a significant possibility that he could die. Not that we didn't already know that, but I guess the possibility is higher than I expected. I like what my mom says: "Either way, Seth wins. He gets to live here, loved and cared for, or he gets to go be with Jesus." (And we will join him one day!) My biggest goal is to make sure he is LOVED and cared for tenderly. He's been getting regular sedative medication, pain medication (although they've been able to wean that down a bit and he's been more alert and tolerating it well), plus "Sweet Ease" sugar solution on his tongue during needle sticks to trick his pain sensors - he loves it!
Thank you for praying. We've never appreciated it more.
To God be the Glory,
Carrie for Gavin, too
It's taken several hours to process enough to be able to sit down and write this. We know many of you will pray and all of you care, so we want to let you know that Seth has a heterozygous [on one chromosome only, not both] genetic mutation (ABCA3) likely affecting his lungs' ability to properly manufacture surfactant. Surfactant is critical for breathing as it allows the lungs to continue inflating properly. How much of the lung disease is due to surfactant deficiency and how much is due to his prematurity and resulting need for machines and oxygen, we don't know, but it's likely that the genetic mutation is at least exacerbating his condition. An ABCA3 mutation on both chromosomes (homozygous; from mom and dad) is often fatal. However, given that Seth's mutation is only on one chromosome (heterozygous), we don't know where he falls in the spectrum of disease. Is he one of those who will do better and grow lung tissue fast enough to compensate for both the machine/oxygen damage and genetic mutation? Obviously he is producing SOME surfactant, or he would not have survived at all. (As one doc said a couple weeks ago, he would bet Seth did not have a surfactant deficiency mutation because he wasn't sick enough.) Or is he one of the babies who will ultimately lose the battle, despite all the support and treatment the hospital can give him? We have no way of knowing. We do know Who wrote the book of Seth's life before one of his days came to be, though. (Psalm 139) That doesn't mean this isn't very difficult and sad, especially the thought of how long he could be in the NICU and how painful it will be if there comes a time when we turn off the machines and say goodbye.
Needless to say, I cried a fair amount during the meeting with the neonatologists, neonatal nurse practitioner, and nurses today. My crying can't help Seth, though, and could hurt him (and the other precious babes) because it wears me out! I need to be in "top form" to provide the nourishment and love he and his siblings need, as well as continue to mother Isaac here at home. We will be busier than ever now that we will have a child at Children's Medical Center, others at St. Paul's for a few more weeks, still others coming home soon (Lord willing), plus Isaac. So this is a plea for any additional volunteers, especially those who can commit longterm and those who have experience with nursing. Volunteers, including those who can help keep home from falling down around our ears, will enable us to be with Seth as he grows increasingly aware of his surroundings and needs increasing amounts of interaction with his parents, grandparents and environment and/or as he grows increasingly sick. We're in a wait and see period right now.
Seth still has a PDA and the pulmonary hypertension, but the blood flow through the PDA is the reverse of what they would expect given his pulmonary hypertension, so that's perplexing. He will undergo very extensive imaging tonight or tomorrow morning. They may decide to ligate the PDA despite how risky the surgery would be given his current poor lung condition. They may add another drug to the nitric oxide to ramp up treatment of the pulmonary hypertension. It's the tightrope walk again. We continue to pray for wisdom for the medical staff.
To sum up, in the specialist's words, Seth is very sick and there is a significant possibility that he could die. Not that we didn't already know that, but I guess the possibility is higher than I expected. I like what my mom says: "Either way, Seth wins. He gets to live here, loved and cared for, or he gets to go be with Jesus." (And we will join him one day!) My biggest goal is to make sure he is LOVED and cared for tenderly. He's been getting regular sedative medication, pain medication (although they've been able to wean that down a bit and he's been more alert and tolerating it well), plus "Sweet Ease" sugar solution on his tongue during needle sticks to trick his pain sensors - he loves it!
Thank you for praying. We've never appreciated it more.
To God be the Glory,
Carrie for Gavin, too
Wednesday, October 3, 2012
Not much news, but our babies are cute!
We had a good time with the babies today. We are especially thankful for our pastors and elders coming to pray over Seth specifically this afternoon. Thank you also to everyone who joined in with us from afar! During that time and for quite a while afterward, we were able to spend time touching and supporting (not quite holding) Seth. He handled it very well-- seemed to love it. He was very alert and observant the whole time.
His situation has not changed, so please keep praying for him. Please also pray that David and Grace will gain weight. Grace is just tiny still and David hasn't gained for the past three days. He's doing great, though. They actually took him off his pulse oxygen monitor since he's had no troubles oxygenating for days. One less wire to be attached to.
Bedtime. Love to all.
Gavin
His situation has not changed, so please keep praying for him. Please also pray that David and Grace will gain weight. Grace is just tiny still and David hasn't gained for the past three days. He's doing great, though. They actually took him off his pulse oxygen monitor since he's had no troubles oxygenating for days. One less wire to be attached to.
Bedtime. Love to all.
Gavin
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| Isaac goofing off |
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| a long, wonderful time with Seth |
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| Seth staring right into Mommy's eyes |
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| Grace enjoying her cannula without a mask |
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| Grandma, Grandpa, Mom, and Dad with hands on Seth |
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| Will's profile- he's getting chubby |
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| David and Will hanging out |
Prayer time for Seth today
Some of the pastors and elders from our church are coming to the NICU to pray over Seth at 1:30 (Central Time) if any of you would like to join us from afar! There is no discernible explanation for why he isn't getting any better (and in some ways worse). Thanks!!
Monday, October 1, 2012
pulmonary hypertension, PDA, infection and eye exams
Hi everyone,
How's that for a subject line?! It's been an interesting day. Also a lovely one, as we got to hold all our babies but Seth, and I got to be with Seth during his echocardiogram and for a long while afterward, stroking his temple and singing to him. He seemed really comfy and happy. He looked at me for a while, then went to sleep, and his oxygen saturation stayed good the entire time. Thank God he wasn't so "touchy" today and handled his exam so well! He is SUCH a precious little boy. It satisfies me deeply to be able to touch and kiss him and smile into his sweet eyes.
The results show that he has pulmonary hypertension again, so he is back on the full dose of nitric oxide - he had been weaned to 12 ppm; is now on 20 ppm. His PDA was tiny, thank God, but the nitric dilates all blood vessels so it's likely the PDA will also enlarge as they treat the pulmonary hypertension. It's such a tightrope walk and roller-coaster! I don't even really know how to pray except for healing. Obviously the Lord doesn't need me to pray for all the right things in order to do what's needed for Seth. Sometimes it really does seem as though our prayers are just groanings, and we depend on our Triune God's wisdom, love, intercession, power and sovereignty. Thank you for joining us in prayer; a HUGE encouragement!
A huge praise is the good eye exams on the "older" three babies (A,B,C; aka Will, David, and Marcie). No evidence of retinopathy yet. David's blood vessels have grown out to zone 3; Will's and Marcie's are still in zone 2. None of the retinas are fully developed yet, but they will continue to until the babies' actual due date in early-November and beyond.
I got to tandem nurse David and Will today! They did great - SO CUTE!! Will was really not interested at first, but when David joined him on the nursing pillow he looked at him and latched on just as David did. It was so funny, like he was actually competing! Will is 6 pounds even now! David is 4 pounds 8 oz; 2 oz less than Marcie. Come on, David, man-up!
Marcie keeps forgetting to breathe and having low heart-rate episodes. She is too old to get the caffeine early preemies receive to stimulate breathing, so she's needing higher airflow still from the cannula. We pray she'll get better at regular breathing.
Gracie is so sweet, doing well on a lower setting on her CPAP. She is still 3 pounds 8.8. oz. She is well-loved and often commented-upon because she has such big eyes and is so alert - not that you can tell from this picture! See the posts from when she was at Children's to get her PDA ligated. :)
Love and gratitude,
Carrie
How's that for a subject line?! It's been an interesting day. Also a lovely one, as we got to hold all our babies but Seth, and I got to be with Seth during his echocardiogram and for a long while afterward, stroking his temple and singing to him. He seemed really comfy and happy. He looked at me for a while, then went to sleep, and his oxygen saturation stayed good the entire time. Thank God he wasn't so "touchy" today and handled his exam so well! He is SUCH a precious little boy. It satisfies me deeply to be able to touch and kiss him and smile into his sweet eyes.
The results show that he has pulmonary hypertension again, so he is back on the full dose of nitric oxide - he had been weaned to 12 ppm; is now on 20 ppm. His PDA was tiny, thank God, but the nitric dilates all blood vessels so it's likely the PDA will also enlarge as they treat the pulmonary hypertension. It's such a tightrope walk and roller-coaster! I don't even really know how to pray except for healing. Obviously the Lord doesn't need me to pray for all the right things in order to do what's needed for Seth. Sometimes it really does seem as though our prayers are just groanings, and we depend on our Triune God's wisdom, love, intercession, power and sovereignty. Thank you for joining us in prayer; a HUGE encouragement!
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| Seth all bundled up after his echocardiogram |
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| Seth's sweet profile. He's 4 lb 13 oz tonight. |
A huge praise is the good eye exams on the "older" three babies (A,B,C; aka Will, David, and Marcie). No evidence of retinopathy yet. David's blood vessels have grown out to zone 3; Will's and Marcie's are still in zone 2. None of the retinas are fully developed yet, but they will continue to until the babies' actual due date in early-November and beyond.
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| David is Daddy's Allstar! (so are the other kids, of course!) |
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| LOVE the camo pants! And the faces. David is king of faces. |
I got to tandem nurse David and Will today! They did great - SO CUTE!! Will was really not interested at first, but when David joined him on the nursing pillow he looked at him and latched on just as David did. It was so funny, like he was actually competing! Will is 6 pounds even now! David is 4 pounds 8 oz; 2 oz less than Marcie. Come on, David, man-up!
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| Will snuggled in after his feed. I want to kiss and cuddle him NOW! As much as I want them home, though, I realize I need to enjoy the freedom I have while I have it. |
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| If David is king of faces, Marcie is the princess of poses |
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| Big yawn! Daddy is holding his little girl. |
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| "I'm perplexed . . . why did you put me down, Dad?" (So sweet: thank you for the clothes, Wanda! Too bad Gracie is so tiny still; otherwise she could match.) |
Gracie is so sweet, doing well on a lower setting on her CPAP. She is still 3 pounds 8.8. oz. She is well-loved and often commented-upon because she has such big eyes and is so alert - not that you can tell from this picture! See the posts from when she was at Children's to get her PDA ligated. :)
Love and gratitude,
Carrie
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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones
