HI everyone,
Micah continues to progress. Yesterday they took him off of CPAP and now he has just a nasal canula with 1 Liter of flow. The only things on his face is the little tube for his oxygen, and his NJ tube, both of which are through his nose. He is such a cute little guy, and it is so fun to be able to see him without any major obstructions. Today they removed his Picc line because he is up to full feeds, so he no longer has any IV's attached to him.
He has been having a few low level A's and B's, (Apnea-stops breathing, Bradycardia-heart rate drops) but they consider that normal, so although it is scary when it happens, it isn't something I need to be overly concerned about.
All in all, things are going good.
Wednesday, April 25, 2007
Sunday, April 22, 2007
Head update
Hi all,
I forgot to update everyone on the head situation. For the past week at least Micah's head seems to have stopped growing beyond what is normal. Hopefully that will stay the case and no further action will be needed. Also, because of his size, and because the Cpap gives him and little more flexibility and because they are trying to ween him from Ativan (a sedative) so they swaddle him instead of giving him the medicine, Micah is now in an open crib instead of an incubator. He is still has his Picc line, and he is still receiving breathing treatment, but I guess they decided that an open crib would be better. Hurray! No more looking through plastic to see my little guy.
That's all, I think!
I forgot to update everyone on the head situation. For the past week at least Micah's head seems to have stopped growing beyond what is normal. Hopefully that will stay the case and no further action will be needed. Also, because of his size, and because the Cpap gives him and little more flexibility and because they are trying to ween him from Ativan (a sedative) so they swaddle him instead of giving him the medicine, Micah is now in an open crib instead of an incubator. He is still has his Picc line, and he is still receiving breathing treatment, but I guess they decided that an open crib would be better. Hurray! No more looking through plastic to see my little guy.
That's all, I think!
Saturday, April 21, 2007
Happy 2 weeks!
Much has happened since we last wrote. Much of it has been happy! Micah is now completely off any heart support, no nitric, no Flolan, no seldonafel. He is completely weened from his pain medication (fentinal). In one week he went from the jet (helps him breath in and out) to the ocillator (helps him breathe in), to the Cpap, which means he is extubated! Hurray, no icky tubes down his throat any more. Well, he still has his feeding tube in, but that's nothing compared to his vent tubes. He has been on the Cpap for a week now, and his oxygen has been down below 30 for most of the week. There were times when he was at 100% for weeks at a time and reaching 30 seemed like a miracle...and guess what! We got our miracle! Since last Saturday he has gone down on his Cpap support from an 8 to a 7. Cpap is the last support before breathing on his own. We are so close!
I was talking to my dad today and my comment was "As soon as he can breath and eat things will be great!". Yeah, breathing and eating are pretty important things.
He is continuing to improve on his breathing, and it feels like he is digressing on his feeds. They are trying something new this week, and hopefully he will start digesting the breast milk he is getting so that we can get rid of his Picc line (semi-permanent IV).
Now, here is the greatest happy part. I get to hold my baby for the first time! Yeah! The OT (Occupational Therapist) is my new best friend. Because Micah has been stable with the Cpap she cleared it for me to hold him. As in, sit in a rocking chair, take him out of the incubator and hold him. The first time was a trial run. He was a happy camper and because he remained stable for it, I now get to hold him EVERY DAY! Hurray! Seth is looking forward to his turn tomorrow. It has been hard for him to be up here in Logan and only get to see Micah on the weekends (mostly just on Sunday). What a trooper! Sacrificing so that we can keep our house, food on the table, and key factor here-our insurance through his job!
Thanks again everyone for your prayers, love, and support. Miracles are happening, and it's because of you!
I was talking to my dad today and my comment was "As soon as he can breath and eat things will be great!". Yeah, breathing and eating are pretty important things.
He is continuing to improve on his breathing, and it feels like he is digressing on his feeds. They are trying something new this week, and hopefully he will start digesting the breast milk he is getting so that we can get rid of his Picc line (semi-permanent IV).
Now, here is the greatest happy part. I get to hold my baby for the first time! Yeah! The OT (Occupational Therapist) is my new best friend. Because Micah has been stable with the Cpap she cleared it for me to hold him. As in, sit in a rocking chair, take him out of the incubator and hold him. The first time was a trial run. He was a happy camper and because he remained stable for it, I now get to hold him EVERY DAY! Hurray! Seth is looking forward to his turn tomorrow. It has been hard for him to be up here in Logan and only get to see Micah on the weekends (mostly just on Sunday). What a trooper! Sacrificing so that we can keep our house, food on the table, and key factor here-our insurance through his job!
Thanks again everyone for your prayers, love, and support. Miracles are happening, and it's because of you!
Monday, April 9, 2007
Micah update... and Spencer's funeral
Hi all. It's been a while since we've updated the blog, no? We've been a little off-kilter over the past few weeks, for obvious reasons. But we've also enjoyed a positive outpouring of love and support. We'd be ungrateful if we didn't do our best to keep everyone up to date on the State of Things. Thanks for all of your thoughts and prayers: they've helped us tremendously.
I'm up against the same quandary I face on the three or four occasions each year when I take time to write in my journal, namely, that so much has happened since I last wrote that I'm torn between (1) trying to make a bullet-point list of everything and risk not saying enough about anything to interest anyone and (2) giving all but the most recent past events a miss-in-balk on the grounds that more about something is better than less about everything. In this case, I'm going with Option B, I think. Melissa might well come along and fill in the blanks later.
But before recounting Micah's status as of the moment, I ought to mention Spencer's funeral briefly. We laid our little fellow to rest on Saturday, March 17th. The day was beautiful, and we were buoyed throughout by helping hands from friends and relatives. I'd hate to even start tallying the miles and hours folks spent traveling to be there. I won't describe the services just now, but suffice it to say that they were uplifting. We buried Spencer in the "Babyland" section of the Logan Cemetery.
The cemetery is situated on the grounds of Utah State University, where Melissa and I attended college. We used to take walks through the cemetery on Sunday afternoons. I remember that we'd pause in Babyland every now and then and wonder how parents who had to leave their children there made it through the ordeal. We know now: with lots of help from caring people and a firm faith in our Father's plan of salvation.
Thanks again for your collective support. It's made all of the difference in the world to us.
Micah is--well--hanging in there. He's still got plenty of fight in him, and we're encouraged by the progress he's made over the last few weeks. We're allowing ourselves to be cautiously optimistic about his prospects, I think. Today's big battery o' tests turned out as follows:
CHEST X-RAY
In general, he's doing about as he's been doing for several weeks. Which is to say, his little lungs are pretty sick. But they've not gotten worse lately, and that's good! The doctors are telling us that he's likely to have chronic lung trouble for several years. It's the sort of thing he stands a fair chance of growing out of (in time), but it's going to be an issue for him. He'll probably tire easily when he's active. He'll be more than usually susceptible to colds, RSV, etc. and may suffer from asthma-like symptoms. On the whole, though, he's taking up oxygen into his bloodstream more efficiently and more independently than ever before (which isn't saying much, frankly). He's on a "jet" ventilator, which holds his lungs open with quick pulses of air (200+ per minute), and a standard ventilator, too. He no longer needs the nitric therapy he'd been receiving since Day 2 of his little life, though, and he's been weaned from his Flolan (a breathing / oxygenating-related drug).
HEAD ULTRASOUND
Micah's head has been growing more quickly than the doctors would like to see. Given that they know he has suffered a Grade 4 brain bleed in both hemispheres, they're worried that clotting may block the natural drainage of fluid from the brain down through the spinal corridor, causing swelling. Today's head ultrasound indicated that some fluid is accumulating (his ventricles are expanding in an unhealthy way), but conditions at the moment don't warrant drastic action (e.g. a transfer to Primary Children's Medical Center, next door, and the installation of a drainage shunt).
EYES
Micah's eyes look OK. It seems likely that at least one will work: the docs who looked at them today indicated that one eye has developed appropriately and that the other, while a little behind the first, is on track to reach functioning maturity. Here's hoping!
FEEDINGS
Micah is receiving breast milk through a feeding tube. Over the past few weeks, he's had trouble digesting this from time to time. The docs put him on a half-and-half (half milk, half water) diet a couple of days ago, though, and everything's been hunky-dorey in the digestion division since then. They've asked Melissa to quit dairy cold turkey and will see if Micah can tolerate 100% breastmilk if it's not dairy-enhanced. Our other boys all had tummy trouble when mom indulged in dairy, so why not Micah? Poor Melissa. :-)
GROWTH
Micah's put on a couple of pounds and grown an inch or so since birth. He now weighs in at a whopping five pounds or so and measures 16.5" in length. As soon as he's off of his remaining IVs and his ventilator, in fact, he'll be eligible to move out of the isolet and into a crib. And we'll get to hold him, too, which will be nice.
Thanks again, everyone, for all that you're doing for us. We appreciate it. I'll try to write at least a little every day from here on out, but I'll probably come up short of the mark. Bear with us... :-)
I'm up against the same quandary I face on the three or four occasions each year when I take time to write in my journal, namely, that so much has happened since I last wrote that I'm torn between (1) trying to make a bullet-point list of everything and risk not saying enough about anything to interest anyone and (2) giving all but the most recent past events a miss-in-balk on the grounds that more about something is better than less about everything. In this case, I'm going with Option B, I think. Melissa might well come along and fill in the blanks later.
But before recounting Micah's status as of the moment, I ought to mention Spencer's funeral briefly. We laid our little fellow to rest on Saturday, March 17th. The day was beautiful, and we were buoyed throughout by helping hands from friends and relatives. I'd hate to even start tallying the miles and hours folks spent traveling to be there. I won't describe the services just now, but suffice it to say that they were uplifting. We buried Spencer in the "Babyland" section of the Logan Cemetery.
The cemetery is situated on the grounds of Utah State University, where Melissa and I attended college. We used to take walks through the cemetery on Sunday afternoons. I remember that we'd pause in Babyland every now and then and wonder how parents who had to leave their children there made it through the ordeal. We know now: with lots of help from caring people and a firm faith in our Father's plan of salvation.
Thanks again for your collective support. It's made all of the difference in the world to us.
Micah is--well--hanging in there. He's still got plenty of fight in him, and we're encouraged by the progress he's made over the last few weeks. We're allowing ourselves to be cautiously optimistic about his prospects, I think. Today's big battery o' tests turned out as follows:
CHEST X-RAY
In general, he's doing about as he's been doing for several weeks. Which is to say, his little lungs are pretty sick. But they've not gotten worse lately, and that's good! The doctors are telling us that he's likely to have chronic lung trouble for several years. It's the sort of thing he stands a fair chance of growing out of (in time), but it's going to be an issue for him. He'll probably tire easily when he's active. He'll be more than usually susceptible to colds, RSV, etc. and may suffer from asthma-like symptoms. On the whole, though, he's taking up oxygen into his bloodstream more efficiently and more independently than ever before (which isn't saying much, frankly). He's on a "jet" ventilator, which holds his lungs open with quick pulses of air (200+ per minute), and a standard ventilator, too. He no longer needs the nitric therapy he'd been receiving since Day 2 of his little life, though, and he's been weaned from his Flolan (a breathing / oxygenating-related drug).
HEAD ULTRASOUND
Micah's head has been growing more quickly than the doctors would like to see. Given that they know he has suffered a Grade 4 brain bleed in both hemispheres, they're worried that clotting may block the natural drainage of fluid from the brain down through the spinal corridor, causing swelling. Today's head ultrasound indicated that some fluid is accumulating (his ventricles are expanding in an unhealthy way), but conditions at the moment don't warrant drastic action (e.g. a transfer to Primary Children's Medical Center, next door, and the installation of a drainage shunt).
EYES
Micah's eyes look OK. It seems likely that at least one will work: the docs who looked at them today indicated that one eye has developed appropriately and that the other, while a little behind the first, is on track to reach functioning maturity. Here's hoping!
FEEDINGS
Micah is receiving breast milk through a feeding tube. Over the past few weeks, he's had trouble digesting this from time to time. The docs put him on a half-and-half (half milk, half water) diet a couple of days ago, though, and everything's been hunky-dorey in the digestion division since then. They've asked Melissa to quit dairy cold turkey and will see if Micah can tolerate 100% breastmilk if it's not dairy-enhanced. Our other boys all had tummy trouble when mom indulged in dairy, so why not Micah? Poor Melissa. :-)
GROWTH
Micah's put on a couple of pounds and grown an inch or so since birth. He now weighs in at a whopping five pounds or so and measures 16.5" in length. As soon as he's off of his remaining IVs and his ventilator, in fact, he'll be eligible to move out of the isolet and into a crib. And we'll get to hold him, too, which will be nice.
Thanks again, everyone, for all that you're doing for us. We appreciate it. I'll try to write at least a little every day from here on out, but I'll probably come up short of the mark. Bear with us... :-)
Saturday, March 24, 2007
Hello all,
Life since our boys were born has been a rollar coaster of visitors, activities, and emotions. The thursday following the birth of our beautiful babies the doctors and nurses called us in for a meeting. They described to us how sick the boys were (basically on death's doorstep) and then informed us that if they did survive, they would both be severely handicapped-with the possibility of them being hospitalized the rest of their lives. They then gave us the choice to let our boys go. What a devestating day! They encouraged us to make our decision within the next 24 hours. the next day, after having a different neonatologist review the head ultra-sounds, they encouraged us to wait to make a decision until after a new set of tests on Monday. The ran the tests on Monday, but results weren't ready unti the following day.
Tuesday morning, March 13, one week and one day following his birth, Spencer made the choice for us, and went to magnify his calling in the Spirit world.He was a sick little fellow and we feel priviledged that he stuck around as long as he did. We were able to give both of them a name and a blessing Sunday morning with both sets of grandparents, two uncles and one set of great-grandparents in attendance. It was a special day.
Tuesday afternoon we received the status report prepared for Micah. According to our interpretation of what the doctors said Micah was extremely close to following his brother (a few more days maybe) and they again gave us the option of sending him home to join Spencer. If I have one major peice of advice it would be -do not make any major decisions on such a day. We came close to deciding to let go of Micah as well. However, we weren't positive and Seth was wise enough to say, if we're not sure, then we shouldn't do anything. Thank goodness! The next day, upon reflection we decided that in our emotional distress we couldn't do anything but stick to our original plan, which was let things go on as they were. Basically we chose to say "Heavenly Father, you may have these little ones if that is Thy will, but we're going to keep them until you tell us you need them". He let us know that it was Spencer's time, (spencer got perforated bowl syndrome, something untreatable in his state) and so we said good-bye.
It has been over a week since we made our choice to hang on to our little Micah, and he likewise is hanging on. His lungs are still very very very sick. They started giving him a new treatment involving steroids two days ago that they reserve for only extreme cases because of possible side-effects. However, his heart is looking better, and they are weaning him off of some of the treatments they have been using for that. They did another brain ultrasound (performed every Monday, unless needed more often) and although he still has the same problems as before, things have not progressed, or gotten worse. So basically, things are about the same, Micah is not really getting better, and not really getting worse. Each day we are grateful for any good news we receive, like his oxygen support being down to 61 instead of 84, etc. We are learning a whole new set of medical data, and are becoming pretty effecient in reading what all of his monitors are telling us. We continue to pray that Micah will remain with us and are grateful for all of the prayers of faith and support in his and our behalf. We have been buoyed up during this difficult time and are eternaly grateful.
For those of you wondering about what our family is doing, The arrangments right now consist of Scotty and Seth living in Logan (school and work do happen, and are neccessary unfortunatley). Max, Simon and I are staying in Tooele with Seth's parents so that I can go to the hospital each day and visit Micah (children under 14 are not allowed in the NICU during RSV season which lasts usually until the end of May). For the past two weeks, my Mom picked me up and drove me because until yesterday I wasn't allowed to drive (results of my C-section). She however, after 6 weeks, is finally going home to California, and my dad and brothers still there. Right now, our family gets to be together on the weekends. However, as the needs of the family change, then most likely our living arrangements will change as well.
That, in brief, has been our last two weeks. Services for Spencer were held on March 17, and his little body is now a part of "Baby Land" in the Logan City cemetary.
We might keep this up better in the future, and we might not. things are still in upheaval and it might take us a while, but we will try to keep people informed on how micah is doing. Hopefully, that will continue for a long, long, time!
Life since our boys were born has been a rollar coaster of visitors, activities, and emotions. The thursday following the birth of our beautiful babies the doctors and nurses called us in for a meeting. They described to us how sick the boys were (basically on death's doorstep) and then informed us that if they did survive, they would both be severely handicapped-with the possibility of them being hospitalized the rest of their lives. They then gave us the choice to let our boys go. What a devestating day! They encouraged us to make our decision within the next 24 hours. the next day, after having a different neonatologist review the head ultra-sounds, they encouraged us to wait to make a decision until after a new set of tests on Monday. The ran the tests on Monday, but results weren't ready unti the following day.
Tuesday morning, March 13, one week and one day following his birth, Spencer made the choice for us, and went to magnify his calling in the Spirit world.He was a sick little fellow and we feel priviledged that he stuck around as long as he did. We were able to give both of them a name and a blessing Sunday morning with both sets of grandparents, two uncles and one set of great-grandparents in attendance. It was a special day.
Tuesday afternoon we received the status report prepared for Micah. According to our interpretation of what the doctors said Micah was extremely close to following his brother (a few more days maybe) and they again gave us the option of sending him home to join Spencer. If I have one major peice of advice it would be -do not make any major decisions on such a day. We came close to deciding to let go of Micah as well. However, we weren't positive and Seth was wise enough to say, if we're not sure, then we shouldn't do anything. Thank goodness! The next day, upon reflection we decided that in our emotional distress we couldn't do anything but stick to our original plan, which was let things go on as they were. Basically we chose to say "Heavenly Father, you may have these little ones if that is Thy will, but we're going to keep them until you tell us you need them". He let us know that it was Spencer's time, (spencer got perforated bowl syndrome, something untreatable in his state) and so we said good-bye.
It has been over a week since we made our choice to hang on to our little Micah, and he likewise is hanging on. His lungs are still very very very sick. They started giving him a new treatment involving steroids two days ago that they reserve for only extreme cases because of possible side-effects. However, his heart is looking better, and they are weaning him off of some of the treatments they have been using for that. They did another brain ultrasound (performed every Monday, unless needed more often) and although he still has the same problems as before, things have not progressed, or gotten worse. So basically, things are about the same, Micah is not really getting better, and not really getting worse. Each day we are grateful for any good news we receive, like his oxygen support being down to 61 instead of 84, etc. We are learning a whole new set of medical data, and are becoming pretty effecient in reading what all of his monitors are telling us. We continue to pray that Micah will remain with us and are grateful for all of the prayers of faith and support in his and our behalf. We have been buoyed up during this difficult time and are eternaly grateful.
For those of you wondering about what our family is doing, The arrangments right now consist of Scotty and Seth living in Logan (school and work do happen, and are neccessary unfortunatley). Max, Simon and I are staying in Tooele with Seth's parents so that I can go to the hospital each day and visit Micah (children under 14 are not allowed in the NICU during RSV season which lasts usually until the end of May). For the past two weeks, my Mom picked me up and drove me because until yesterday I wasn't allowed to drive (results of my C-section). She however, after 6 weeks, is finally going home to California, and my dad and brothers still there. Right now, our family gets to be together on the weekends. However, as the needs of the family change, then most likely our living arrangements will change as well.
That, in brief, has been our last two weeks. Services for Spencer were held on March 17, and his little body is now a part of "Baby Land" in the Logan City cemetary.
We might keep this up better in the future, and we might not. things are still in upheaval and it might take us a while, but we will try to keep people informed on how micah is doing. Hopefully, that will continue for a long, long, time!
Tuesday, March 6, 2007
Middle names
We've chosen middle names for our kiddos:
Spencer Dee Johnson (middle-named for Melissa's maternal grandfather)
Micah Dale Johnson (middle-named for Seth's maternal grandfather)
The fact that both middle names start with "D" is a bonus.
Spencer Dee Johnson (middle-named for Melissa's maternal grandfather)
Micah Dale Johnson (middle-named for Seth's maternal grandfather)
The fact that both middle names start with "D" is a bonus.
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