Kelly is at the NICU while I am at home. I am still trying to get over this chest cold, and don't want to expose anyone to anything else up there. They decided to move up the head ultrasound to today instead of Dec 9. I am not sure why, but feel like they are probably trying to see what the blood is doing in Kyle's head as of now. I think they are trying to figure out why he is having seizures. I am praying so hard that this is just a side affect of the level 3 bleeds we already knew about and that is it... just some residual affects of a past problem. I am praying that this is NOT what they call PVL or anything new. Please pray this way with us. Pray that these seizures aren't further indication of something worse. I am somewhat glad that they are doing this now, but also it makes us nervous to see what is going on. It is double hard because Kelly is up there and I am here. At least Shauna is up there with her, which is good. When we went through the scary stuff with Jack's pregnancy, Shauna was with Kelly then too. Something about when those two get together and pray is powerful... so I will be encouraging them to take the opportunity to pray powerful and bold, expecting prayers today over Kyle. Would you join us too?
Pray for peace for Kelly and for good reports. Pray this medication works for his seizures and that Kyle's brain will overcome all of this! Thanks for praying with us!
Kyle's NICU Story in Pictures
Friday, November 30, 2007
Thursday, November 29, 2007
Back to the unknown...
Here we are back at square one again... not knowing what this means, but we just got a phone call from Dr. Lopez. Never good to pick up the phone and see your NICU doctor's number on it around 10 ish pm, no matter how much you like her, you would rather she call you after life in the NICU, you know... a social chat or something, but tonight was a little different.
It was one of those I wish you wouldn't have said that phone calls.
After the EEG today, I really felt like the last thing we would be thinking about would be seizures, especially since we already crossed this bridge once, and found nothing, when he really looked like he was having them.
But, never the less, we have found out tonight that Kyle is indeed having seizures.
They have immediately began a medication for this. We will know nothing really about this until tomorrow.
Please pray for Kyle tonight, and pray for us. It gets hard to pray sometimes. It gets difficult sometimes to continue
to keep the faith up,... but, we will wait and have to believe God is in this somewhere.
We know He is. Just hard to see it sometimes.
Thanks for praying. We will blog tomorrow when we get more info.
It was one of those I wish you wouldn't have said that phone calls.
After the EEG today, I really felt like the last thing we would be thinking about would be seizures, especially since we already crossed this bridge once, and found nothing, when he really looked like he was having them.
But, never the less, we have found out tonight that Kyle is indeed having seizures.
They have immediately began a medication for this. We will know nothing really about this until tomorrow.
Please pray for Kyle tonight, and pray for us. It gets hard to pray sometimes. It gets difficult sometimes to continue
to keep the faith up,... but, we will wait and have to believe God is in this somewhere.
We know He is. Just hard to see it sometimes.
Thanks for praying. We will blog tomorrow when we get more info.
Pray today... Thursday
Pray today... I just got home from the hospital. Shouldn't have gone, but hey,... I didn't go in the pod except for doctor's rounds and didn't stick around long or get too close to anyone. They have decided to do an EEG on Kyle early to see what is going on neurologically. They are trying to rule out seizures. I am praying and believing that he is not fighting seizures, because that would lead us to ask bigger questions,... what is the blood in his brain doing, is there damage, etc????
Anyway, this all began because during some desaturations, Kyle would let the vent work to bring him back where he needed to be instead of working himself to breathe back up to normal oxygenation. He would get all lazy on us and let his vent do all the work. There could be many reasons for this,... but they have exhausted everything from giving him caffeine to try and perk him up to work harder, to a complete CBC to check for any new infections that would lead to his seemingly lethargic state in comparison to how he usually is. I am praying this is all just because they have been weaning him at such a rapid rate and upping his feedings (12cc's now!) so dramatically, that he is just tired and can't do it all at once...!!! Pray that with us! Pray that his EEG comes back great and normal, and that Kyle is doing as well as they think he is clinically. He had another beautiful blood gas today, so they may have even decreased his vent again by now to 35 breaths per minute. We'll see. But, like I said 12 cc's! My man is eating! Other than this "ruling out" testing, Dr. Lopez says he is doing really well... so, we pray she is correct and that this EEG rules out seizures. We love Dr. Lopez. It is going to be hard to let her rotate out in December. Pray we get another great Doc in Dec that we trust as much as her! Thanks for praying! More later. I am home trying to get well. Kelly is up at the hospital, and rumor has it according to the nurse today, she is about to kangaroo care again! She gets to hold him again real soon, ... right after she finishes her favorite thing in the entire world,... pumping... (that was sarcastic). But, she gladly does the stuff she doesn't like to she can do the things she loves,... like hold Kyle and give him what he needs to get well and big faster!
more news later tonight.
Anyway, this all began because during some desaturations, Kyle would let the vent work to bring him back where he needed to be instead of working himself to breathe back up to normal oxygenation. He would get all lazy on us and let his vent do all the work. There could be many reasons for this,... but they have exhausted everything from giving him caffeine to try and perk him up to work harder, to a complete CBC to check for any new infections that would lead to his seemingly lethargic state in comparison to how he usually is. I am praying this is all just because they have been weaning him at such a rapid rate and upping his feedings (12cc's now!) so dramatically, that he is just tired and can't do it all at once...!!! Pray that with us! Pray that his EEG comes back great and normal, and that Kyle is doing as well as they think he is clinically. He had another beautiful blood gas today, so they may have even decreased his vent again by now to 35 breaths per minute. We'll see. But, like I said 12 cc's! My man is eating! Other than this "ruling out" testing, Dr. Lopez says he is doing really well... so, we pray she is correct and that this EEG rules out seizures. We love Dr. Lopez. It is going to be hard to let her rotate out in December. Pray we get another great Doc in Dec that we trust as much as her! Thanks for praying! More later. I am home trying to get well. Kelly is up at the hospital, and rumor has it according to the nurse today, she is about to kangaroo care again! She gets to hold him again real soon, ... right after she finishes her favorite thing in the entire world,... pumping... (that was sarcastic). But, she gladly does the stuff she doesn't like to she can do the things she loves,... like hold Kyle and give him what he needs to get well and big faster!
more news later tonight.
Wednesday, November 28, 2007
Wednesday Night -- Nov 28 -- John
Our new normal hit a snag...
Not Kyle,...! He is doing well. We are so excited to be able to say,... HE WEIGHS 2 LBS NOW!!! we can say plural for the word pound! It is now POUNDS! YAY! While that is amazing, he is still not big enough to be able to handle the next size tube for his vent, but,... he is getting there quickly! So for now, he still has to fight the leak, the de-saturations, etc... but other good news is they have increased his feeds to 9 cc's and he seems to be digesting that well - so far. He has developed a potential small hernia that they have been talking to us about today, but, aren't going to be worrying about it until around the time he would go home. As for his respiration, right now, he is somewhere between the 20's and 50's in his oxygenation. His breaths per minute is around 40, and if his blood gases continue to go well through tomorrow morning, they could lower that and wean it more down to 35. That is great news! It doesn't mean that it still couldn't vary if needed, but it is just a really great thing right now that he is handling the pressure they are putting on him to work. He is working hard! He truly is a little lion... a real fighter! ... his nurses have said "feisty" from the beginning. I love that. Some people would not like their kids to be independent or strong headed,... strong willed,... I welcome it. I would rather them display those character traits so that it could be harnessed into a leader role and not just a follower. I may not LOVE it during those teenage years, but... I love that at least for now, all three of my kids display the ability to think for themselves. Kyle has seemingly displayed that ability with flying colors. The last 5 weeks of his life have been truly a gift from God, and Kyle continues to work hard at beating the odds against him. We have another echo on friday I think to check out his pda and heart clot again. Both show to be small. This means, they continue the FFP, (fresh frozen plasma) So for all of you who have donated blood out there in Kyle's name... thanks... he is getting things he needs to help him overcome this heart clot, and sometimes low blood counts. I heard the date Dec 9 for another head scan to see what the blood in his head is doing. Please keep praying that this blood is reabsorbing well and not constricting any spinal fluid flow/blood flow! This is so very important to Kyle's development.
SO... you may ask, what do you mean by the new normal hits a snag??? Well,... the holidays were good. They brought their challenges,.. one of which was me on saturday (the day of my family thanksgiving) I came down with a touch of a virus. This led to constant feeling of throwing up (never did, PRAISE HIM... (I hate that more than roaches,... ok,.. well, maybe not... but I do hate it more than feet.) Instead, I just FELT like I would puke at any given moment, and had a pounding headache. I knew I had some pretty wicked fever one night too, so that meant no hospital for me... just sleep. I felt so bad for my family, because my mom and sister slaved for 2 days to cook a thanksgiving meal for my whole family so to try and still have some sort of normal holiday for us..( I am so thankful to them for that) and, I thanked them by barely being able to eat it and having to go to bed by 8 pm. I felt so LAME for that one... then, on sunday, was back in bed by like 2 pm and slept till 6 ish. I don't think I have slept so much in, well, I don't know... FOREVER. So, to be on the safe side, monday, I went to the doctor and still hung out on tues. 3 days away from Kyle! I did get to hang out with Jadon and Jack some, so that was good, but not too much, because I didn't want them to get what I had. I took Kelly to the hospital today, and peeked in on Kyle, but still didn't feel good about spending time in his pod because today, I woke up feeling a little bit on the sinus infection side. GREAT... from one thing to another. Awesome. Perfect. SO,... tonight, I lay here, feeling sorry for myself somewhat, frustrated, because I still feel like crud warmed over, knowing that as long as I feel like this, I can't be in Kyle's pod. Poor Kelly. She has to bear the brunt of all the hospital stuff on her own right now. So, the verdict is out on whether or not I will be able to hang out with Kyle for a little bit, BUT,... at least he is doing good and is nearly 6 whole weeks old! I am so thankful for that. He really is looking bigger to me now. I can't wait because Shauna just got back from Germany for a while, and she is going to take some new pics of Kyle for you all to see this weekend! SO,... soon and very soon, new photos of the boy! YAY... and I am sure, we will see some more new candids of Jadon and Jack too... she can't help it. She sees them at play and has to click a few here and there, so maybe soon, we will have some good pics again!
Please continue to pray for Kyle. I know you are all busy. Pray for strong lungs,.. pray that his need for the vent will decrease more and more and he will come off that soon,.. pray his PDA to close. Pray his brain to be healthy and good! Pray God's glory! Pray for the fullness of the Holy Spirit to move in Kyle's little life! Thank you to all of you who are still praying and writing emails and comments on the blogs... I can't tell you how much that blesses us at night when we read them. Thanks for the voicemails and texts... I KNOW we haven't answered much,... sorry, but know you are appreciated. Thanks for everything you guys are doing in loving and caring for our family in this time! Please know you are so appreciated as we are overwhelmed by how God is using all of this for our good, the advancement of His kingdom, all our faith's being reshaped, and mostly -- His glory. We believe that.
Not Kyle,...! He is doing well. We are so excited to be able to say,... HE WEIGHS 2 LBS NOW!!! we can say plural for the word pound! It is now POUNDS! YAY! While that is amazing, he is still not big enough to be able to handle the next size tube for his vent, but,... he is getting there quickly! So for now, he still has to fight the leak, the de-saturations, etc... but other good news is they have increased his feeds to 9 cc's and he seems to be digesting that well - so far. He has developed a potential small hernia that they have been talking to us about today, but, aren't going to be worrying about it until around the time he would go home. As for his respiration, right now, he is somewhere between the 20's and 50's in his oxygenation. His breaths per minute is around 40, and if his blood gases continue to go well through tomorrow morning, they could lower that and wean it more down to 35. That is great news! It doesn't mean that it still couldn't vary if needed, but it is just a really great thing right now that he is handling the pressure they are putting on him to work. He is working hard! He truly is a little lion... a real fighter! ... his nurses have said "feisty" from the beginning. I love that. Some people would not like their kids to be independent or strong headed,... strong willed,... I welcome it. I would rather them display those character traits so that it could be harnessed into a leader role and not just a follower. I may not LOVE it during those teenage years, but... I love that at least for now, all three of my kids display the ability to think for themselves. Kyle has seemingly displayed that ability with flying colors. The last 5 weeks of his life have been truly a gift from God, and Kyle continues to work hard at beating the odds against him. We have another echo on friday I think to check out his pda and heart clot again. Both show to be small. This means, they continue the FFP, (fresh frozen plasma) So for all of you who have donated blood out there in Kyle's name... thanks... he is getting things he needs to help him overcome this heart clot, and sometimes low blood counts. I heard the date Dec 9 for another head scan to see what the blood in his head is doing. Please keep praying that this blood is reabsorbing well and not constricting any spinal fluid flow/blood flow! This is so very important to Kyle's development.
SO... you may ask, what do you mean by the new normal hits a snag??? Well,... the holidays were good. They brought their challenges,.. one of which was me on saturday (the day of my family thanksgiving) I came down with a touch of a virus. This led to constant feeling of throwing up (never did, PRAISE HIM... (I hate that more than roaches,... ok,.. well, maybe not... but I do hate it more than feet.) Instead, I just FELT like I would puke at any given moment, and had a pounding headache. I knew I had some pretty wicked fever one night too, so that meant no hospital for me... just sleep. I felt so bad for my family, because my mom and sister slaved for 2 days to cook a thanksgiving meal for my whole family so to try and still have some sort of normal holiday for us..( I am so thankful to them for that) and, I thanked them by barely being able to eat it and having to go to bed by 8 pm. I felt so LAME for that one... then, on sunday, was back in bed by like 2 pm and slept till 6 ish. I don't think I have slept so much in, well, I don't know... FOREVER. So, to be on the safe side, monday, I went to the doctor and still hung out on tues. 3 days away from Kyle! I did get to hang out with Jadon and Jack some, so that was good, but not too much, because I didn't want them to get what I had. I took Kelly to the hospital today, and peeked in on Kyle, but still didn't feel good about spending time in his pod because today, I woke up feeling a little bit on the sinus infection side. GREAT... from one thing to another. Awesome. Perfect. SO,... tonight, I lay here, feeling sorry for myself somewhat, frustrated, because I still feel like crud warmed over, knowing that as long as I feel like this, I can't be in Kyle's pod. Poor Kelly. She has to bear the brunt of all the hospital stuff on her own right now. So, the verdict is out on whether or not I will be able to hang out with Kyle for a little bit, BUT,... at least he is doing good and is nearly 6 whole weeks old! I am so thankful for that. He really is looking bigger to me now. I can't wait because Shauna just got back from Germany for a while, and she is going to take some new pics of Kyle for you all to see this weekend! SO,... soon and very soon, new photos of the boy! YAY... and I am sure, we will see some more new candids of Jadon and Jack too... she can't help it. She sees them at play and has to click a few here and there, so maybe soon, we will have some good pics again!
Please continue to pray for Kyle. I know you are all busy. Pray for strong lungs,.. pray that his need for the vent will decrease more and more and he will come off that soon,.. pray his PDA to close. Pray his brain to be healthy and good! Pray God's glory! Pray for the fullness of the Holy Spirit to move in Kyle's little life! Thank you to all of you who are still praying and writing emails and comments on the blogs... I can't tell you how much that blesses us at night when we read them. Thanks for the voicemails and texts... I KNOW we haven't answered much,... sorry, but know you are appreciated. Thanks for everything you guys are doing in loving and caring for our family in this time! Please know you are so appreciated as we are overwhelmed by how God is using all of this for our good, the advancement of His kingdom, all our faith's being reshaped, and mostly -- His glory. We believe that.
Monday, November 26, 2007
Asleep in 30 Seconds - Kelly
Kyle was good today - got another smile from the doctors! They went down on his breaths per minute. They did the echo today but no results until tomorrow. The NICU was really busy today - but in the afternoon the traffic slowed down and I got to hold Kyle AGAIN! We had a great time! He did great while I was holding him. I don't think unless you have done kangaroo care with a 1 pound and now 14 OUNCE (just a little bragging there!) preemie you can imagine how scary it is to unhook this little guy from his vent and watch a nurse carry him and literally about 50 cords over to you then get him hooked back up and hold him and his vents and today two pumps that give him meds and food just right while you love on him, pray for him, sing to him and just chat a little too! Don't get me wrong - none of this is complaining - it is AMAZING but scary at the same time. I must admit I feel like I might be getting good at it! I am blessed and changed each time I touch is little lion body and smell his little lion smell! I love him to pieces! Please keep praying for Kyle - also he is having trouble with his oxygenation - lots of desats - please pray for this to stabalize - this can be a symptom of the pda (the hole in a heart) or of chronic lung disease. Also please pray for his nurses - they are amazing. Please ask the Lord to bless them in their lives and to be insightful, attentive and full of wisdom as they watch over kyle.
oh ... back to the subject above - Tonight I came home from the hospital early to spend some time with Jadon and Jack. We had a great time playing cars, reading stories and decorating for christmas with Dad! I really think this is the highlight of Jadon's year. I let them both stay up late selfishly just to spend a few more minutes with them! It is so hard to be away from them this much but I am feeling it is even harder for them. Tonight as john was tucking jadon in to bed Jadon became so overwhelmed with that just truly sad cry. Big tears that seemed to come from nowhere but I know came from a building of little boy stress. He said that he did not feel special. My heart sank to hear that coming from the other room and to hear that great big cry again. Talk about a tough family moment! It was just one of those cries that needed to come out. So john spent the next 30 minutes reassuring jadon of how special he is and that God made him "b/c he wanted to". and reminding him of the fact that he was given to us as a gift and oh how we treasure him! Jadon (being incredibly verbal) told us that he was having some "not so nice memories" and those made him sad. We talked through all that and then after lots of hugs I laid down with him. We planned out the week and organized what time I would spend with him and he let me know he can't wait till kyle gets home so we can be a family that lives in one house. We prayed, I sang his song, and then laid down with him - as I was telling him one more time how special he was and how much I loved him I began to hear the faintest little snoring. He fell asleep in about 30 seconds.
All of you on the wall tonight, please pray for Jadon. His name means God has heard.
I am so deeply thankful to whoever you are that is reading this right now. Thank you for doing life with me.
oh ... back to the subject above - Tonight I came home from the hospital early to spend some time with Jadon and Jack. We had a great time playing cars, reading stories and decorating for christmas with Dad! I really think this is the highlight of Jadon's year. I let them both stay up late selfishly just to spend a few more minutes with them! It is so hard to be away from them this much but I am feeling it is even harder for them. Tonight as john was tucking jadon in to bed Jadon became so overwhelmed with that just truly sad cry. Big tears that seemed to come from nowhere but I know came from a building of little boy stress. He said that he did not feel special. My heart sank to hear that coming from the other room and to hear that great big cry again. Talk about a tough family moment! It was just one of those cries that needed to come out. So john spent the next 30 minutes reassuring jadon of how special he is and that God made him "b/c he wanted to". and reminding him of the fact that he was given to us as a gift and oh how we treasure him! Jadon (being incredibly verbal) told us that he was having some "not so nice memories" and those made him sad. We talked through all that and then after lots of hugs I laid down with him. We planned out the week and organized what time I would spend with him and he let me know he can't wait till kyle gets home so we can be a family that lives in one house. We prayed, I sang his song, and then laid down with him - as I was telling him one more time how special he was and how much I loved him I began to hear the faintest little snoring. He fell asleep in about 30 seconds.
All of you on the wall tonight, please pray for Jadon. His name means God has heard.
I am so deeply thankful to whoever you are that is reading this right now. Thank you for doing life with me.
Sunday, November 25, 2007
Sunday Evening - Kelly
Well - today has been a good day - I will even say a great day. My holiday started out pretty rough. I just had a hard time accepting that .. well john said it best... that this is normal. This is our life - the one God spoke of in Jeremiah 29:11. I trust him in that. I really do.
but my weekend ended wonderfully. The fam has been with us all weekend helping us to create that NORMAL chaos that the sherrill clan likes to call a "holiday!" We have a blast but frequently just look around and laugh b/c at any given moment you will find the adults gathered around a table eating and chatting - the sherrill's call this cross talking! (this holiday most family was doing our laundry and cleaning our house for us!) the two older boys were playing baseball in the living room (soft bat and ball - and it was raining outside!) and jack is trying to unload the dishwasher or digging for snacks in the pantry and Britton - well there is not much telling what he is up too but I think the cutest was when he was sorting and lining up the 4 little pairs of shoes that sat by the couch. Now there is a reason in itself to have loads of kids - just to see the shoes in their different sizes all lined in a row. one of my favorite sites. We spent our time one evening talking about what a mess we will be in when Kyle join the ranks at home! Then to end a wonderful weekend I went with my sister (John's really) to go see kyle today. I got to HOLD HIM AGAIN! and he did great with it. I can't tell you the joy that OVERFLOWS in me when Misty looks at me and says "do you want to hold him?". I got to hold Kyle for 2 hours tonight. at one time she had him up on my chest and his little hand was holding onto my chin. We had a wonderful night together of songs and conversation, prayers and just some quiet time. lots of loving. I just find myself so excited tonight - so hopeful.
You know I was thinking tonght about how many times I have said to others "the one of the greatest gifts God could give to us is to increase our faith". Wow - didn't know I would live that one so deeply. God is increasing my faith. my ability to forsake all that I can see, hear and feel and trust Him.
I am thankful tonight. Kyle is up to 4 cc on his feeding. Please pray protection and maturity for his digestive system. Kyle has an echo tomorrow a.m. please ask the Lord to heal the clot in his heart (get rid of it). Ask the Lord to close his PDA - that kyle would not have to endure surgery. Please pray and ask the Jehovah Rapha to absorb the blood from Kyle's brain bleed back into his body and allow all fluid in his brain to flow just as God designed it to - to restore his brain to FULLNESS! Please pray for the Lord to grow new and healthy lung tissue for kyle speedily!
Please pray for John. His is sick - it is not easy to be away from our little one - please pray for peace of mind and quick healing for his body.
Please pray protection for the rest of our family.
THANK YOU to all of you who day after day allow us to invade your lives and beg these prayers from you. I will never be able to thank you enough but may the Lord richly bless you and increase your faith as you give of your self and see Him move mightily!
but my weekend ended wonderfully. The fam has been with us all weekend helping us to create that NORMAL chaos that the sherrill clan likes to call a "holiday!" We have a blast but frequently just look around and laugh b/c at any given moment you will find the adults gathered around a table eating and chatting - the sherrill's call this cross talking! (this holiday most family was doing our laundry and cleaning our house for us!) the two older boys were playing baseball in the living room (soft bat and ball - and it was raining outside!) and jack is trying to unload the dishwasher or digging for snacks in the pantry and Britton - well there is not much telling what he is up too but I think the cutest was when he was sorting and lining up the 4 little pairs of shoes that sat by the couch. Now there is a reason in itself to have loads of kids - just to see the shoes in their different sizes all lined in a row. one of my favorite sites. We spent our time one evening talking about what a mess we will be in when Kyle join the ranks at home! Then to end a wonderful weekend I went with my sister (John's really) to go see kyle today. I got to HOLD HIM AGAIN! and he did great with it. I can't tell you the joy that OVERFLOWS in me when Misty looks at me and says "do you want to hold him?". I got to hold Kyle for 2 hours tonight. at one time she had him up on my chest and his little hand was holding onto my chin. We had a wonderful night together of songs and conversation, prayers and just some quiet time. lots of loving. I just find myself so excited tonight - so hopeful.
You know I was thinking tonght about how many times I have said to others "the one of the greatest gifts God could give to us is to increase our faith". Wow - didn't know I would live that one so deeply. God is increasing my faith. my ability to forsake all that I can see, hear and feel and trust Him.
I am thankful tonight. Kyle is up to 4 cc on his feeding. Please pray protection and maturity for his digestive system. Kyle has an echo tomorrow a.m. please ask the Lord to heal the clot in his heart (get rid of it). Ask the Lord to close his PDA - that kyle would not have to endure surgery. Please pray and ask the Jehovah Rapha to absorb the blood from Kyle's brain bleed back into his body and allow all fluid in his brain to flow just as God designed it to - to restore his brain to FULLNESS! Please pray for the Lord to grow new and healthy lung tissue for kyle speedily!
Please pray for John. His is sick - it is not easy to be away from our little one - please pray for peace of mind and quick healing for his body.
Please pray protection for the rest of our family.
THANK YOU to all of you who day after day allow us to invade your lives and beg these prayers from you. I will never be able to thank you enough but may the Lord richly bless you and increase your faith as you give of your self and see Him move mightily!
Friday, November 23, 2007
The New Normal... -John
I hate the new normal. Don’t get me wrong… I would rather live this right now than not,… but I absolutely don’t love the new normal that our life has become. Kelly and I were having a pity party for two on the way home from the hospital today. We were discussing how today, we should have been shopping and decorating for Christmas and doing all the things that we usually do. We aren’t very “traditional” people, but there are a few things that we have grown to love as a couple and family,… some of those being do the thanksgiving thing with family, then the shop till you drop (even if you don’t purchase anything) day after thanksgiving extravaganza. Now, the other part of me didn’t totally mind missing out on all of that, but,… just the normalcy of the holiday was sorely missed. We spent the day at the hospital. We met some new friends in the nurses,… Kari and Sara were great today. They sort of tagged teamed because poor Kari was on charge nurse duty today, which meant that not only was she Kyle’s nurse, but she was over all other 50 something babies nurses in level 3 NICU. WOW! So, needless to say,… she needed an extra set of hands/eyes etc… enter Sara. They both did such a great job taking care of Kyle. Great people. Kyle did well today considering… when I say that, I mean considering the vent leak that can be either 0-100% at any given moment,.. the pda valve that continues to give him fits, etc… These two things alone are enough to give a parent a heart attack due to how these things present themselves. Together, it just isn’t fun at all. Kyle’s Breathes per minute and Oxygen needs were high today. That was a little hard to take, but we have also been told that he is doing very well considering all he has to overcome, … his doctors and nurses are encouraged by what they see, knowing we still have some hurdles to overcome, but never the less,… encouraged.
That is a good word… encouraged. Poor Jack doesn’t feel well tonight, we can tell. It is difficult to see and know that your kids aren’t feeling well or coping well to change… (the new normal isn’t too much fun for them either… however, we are encouraged.
We have a new 23 week little guy that came into our pod yesterday. It was hard to look at his incubator and parents knowing that they were living in their day one… it flooded back too many memories from just a month ago… but, even still, I am so thankful for that month. I am thankful for the new normal even though it isn’t what I would choose, what I would want… but here we are… I think about that matt redman song a lot,… Oh no, you never let go through the calm and through the storm, oh no,… you never let go every high and every low oh no… you never let go, Lord… You never let go of me…
Great words. Great song. I can see a light, that is coming for the heart that holds on and there will be an end to the troubles but until that day comes… still I will praise You, … still I will praise You…
So even though I am not in love with the new normal… still I will praise Him.
God is good. Times are hard. But, God is good.
I want to say thanks to all of you who are caring for us, about us… text messages, comments on the blog, emails… these things are so encouraging to Kelly and me.
The meals, the gift cards,… these things have been such a blessing to us…. The anonymous people who sent us the card in the mail with the gift,… thank you so much. We received it today. Know from the bottom of our hearts that we are so thankful to all of you, and for all of you… our friends, our family, our community. God is using you to be our encouragement, and to help take care of needs for our family in this time…
And we are thankful for that. We are grateful for that. We have so much to be thankful for… even though this holiday isn’t exactly how we designed it,… it means more to us this year than it has in a long time. The new normal may not be fun sometimes,… but it sure is assuring of God’s care and His glory.
That is a good word… encouraged. Poor Jack doesn’t feel well tonight, we can tell. It is difficult to see and know that your kids aren’t feeling well or coping well to change… (the new normal isn’t too much fun for them either… however, we are encouraged.
We have a new 23 week little guy that came into our pod yesterday. It was hard to look at his incubator and parents knowing that they were living in their day one… it flooded back too many memories from just a month ago… but, even still, I am so thankful for that month. I am thankful for the new normal even though it isn’t what I would choose, what I would want… but here we are… I think about that matt redman song a lot,… Oh no, you never let go through the calm and through the storm, oh no,… you never let go every high and every low oh no… you never let go, Lord… You never let go of me…
Great words. Great song. I can see a light, that is coming for the heart that holds on and there will be an end to the troubles but until that day comes… still I will praise You, … still I will praise You…
So even though I am not in love with the new normal… still I will praise Him.
God is good. Times are hard. But, God is good.
I want to say thanks to all of you who are caring for us, about us… text messages, comments on the blog, emails… these things are so encouraging to Kelly and me.
The meals, the gift cards,… these things have been such a blessing to us…. The anonymous people who sent us the card in the mail with the gift,… thank you so much. We received it today. Know from the bottom of our hearts that we are so thankful to all of you, and for all of you… our friends, our family, our community. God is using you to be our encouragement, and to help take care of needs for our family in this time…
And we are thankful for that. We are grateful for that. We have so much to be thankful for… even though this holiday isn’t exactly how we designed it,… it means more to us this year than it has in a long time. The new normal may not be fun sometimes,… but it sure is assuring of God’s care and His glory.
Wednesday, November 21, 2007
The Roar of a Lion - Kelly
Well - as most of you read I got to Kangaroo care the other day and I have been so exhausted at night I have not blogged about this yet but I really wanted to - so here it goes!
Holding Kyle is amazing - just exactly like when they handed me Jadon and Jack for the first time and I was able to look them over and notice all the amazing details in the way God knit them together. I can't exactly look kyle over - he has zero percent body fat right now and so he has to stay under blankets and against my chest - but I can hold him, smell him, feel him and for now - THAT IS AMAZING.
This last time he did really great - not big desaturations and we were able to hang out there for about one and a half hours. It was wonderful. John is supposed to get his turn soon!
John and I refer to Kyle as our little lion - The affection comes from the hope given to me just after he was born. It begins with my best friend (inseparable since we were 12). I had been talking with her on the way to my doctors appointment - If I am honest I was complaining about how I might not be able to go work out that day if I was having back pain! (dumb!) so after I spoke to my doctor I called her back and told her i would have to deliver at 23 weeks getstation - I was terrified and she blurted out instantly "Kelly, he is going to be okay - he will make it". She didn't know it but spoke hope into my soul. Next I spoke to another friend - My soul friend; my sister. After I told her that our baby was going to be born too soon - 4 months too soon she could not contain her emotions - and as she pleaded with God to show her what was going on - the Lord gave her a picture of a caged little lion trying to get out - he just could not wait. I went into this time in my life with that picture. As she crossed the ocean to get here she asked the Lord to explain the picutre and He gave her Psalm 34. In vs 10 the passage says that even a young lion might go hungry BUT the hope comes in as those who trust in the Lord will lack no good thing. There are SO many promises in this text - I would REALLY encourage you to go and read it. fast forward to the night when my dear friend took a break from my sleeping children to come and pray with me. All 3 of us were having a time of intercession for Kyle. When she prayed she spoke of Kyle as having the spirit of a King. When we were done praying the other friend opened her journal to show us a piece of a song that she wrote on her flight over here that spoke of Kyle having the spirit of a King. The confirmations from the God of the whole world, through my very own friends pierced my heart and buried hope in a place that would soon fight desperation, fear, lonliness, and sorrow. So out of hope comes the affection - our little lion.
so back to kangaroo care - you have heard us speak of a leak in kyle's vent. This forces air to rush past his vocal chords and makes a squeeking sound. and if you have ever heard a little lion learning to roar (or have ever watched The Loin King) - they make this sort of sqeeking sound.
So as I held him there listening to that rythmic squeeking I couldn't help but to be reminded of how one day this little lion is going to stand up and ROAR! and all at once I was flooded with what so many of you (Brandon) had been exclaiming - who exactly I was praying to - this is the God that sent food from the sky, made a blind man see, a lame man walk, parted a sea for his people to walk across, rose a man from the dead, calmed an entire raging see. He has promised to restore us. He is the healer, He is the creator, He is my father!
We will shout from the mountain tops of the goodness of our GOD!!!!
Thanksgiving Day was tough - but then again giving thanks sometimes is. However we are thankful for Kyle and for his progress. We are thankful for our Jadon and Jack. We are thankful for all of you as you read, PRAY, and support Kyle and our family.
Please continue to fervently ask God to heal Kyle's brain - to cause the blood to reabsorb into his body perfectly and for the spinal fluid to be able to flow perfectly. Pray for Kyle's lungs to get bigger and stronger and healthier. Ask God to continue protecting his belly and whole gut - keeping it healthy and accepting food. We ask God to grow him and mature him. We ask that God would supernaturally close his PDA - the heart valve. Medicine has not worked. Pray for God to heal Kyle from the infections he has and for constant protection from others.
and one more thing - please continue to give God all the glory for Kyle's life! Share his story and let others know that our God is our savior and healer!
Holding Kyle is amazing - just exactly like when they handed me Jadon and Jack for the first time and I was able to look them over and notice all the amazing details in the way God knit them together. I can't exactly look kyle over - he has zero percent body fat right now and so he has to stay under blankets and against my chest - but I can hold him, smell him, feel him and for now - THAT IS AMAZING.
This last time he did really great - not big desaturations and we were able to hang out there for about one and a half hours. It was wonderful. John is supposed to get his turn soon!
John and I refer to Kyle as our little lion - The affection comes from the hope given to me just after he was born. It begins with my best friend (inseparable since we were 12). I had been talking with her on the way to my doctors appointment - If I am honest I was complaining about how I might not be able to go work out that day if I was having back pain! (dumb!) so after I spoke to my doctor I called her back and told her i would have to deliver at 23 weeks getstation - I was terrified and she blurted out instantly "Kelly, he is going to be okay - he will make it". She didn't know it but spoke hope into my soul. Next I spoke to another friend - My soul friend; my sister. After I told her that our baby was going to be born too soon - 4 months too soon she could not contain her emotions - and as she pleaded with God to show her what was going on - the Lord gave her a picture of a caged little lion trying to get out - he just could not wait. I went into this time in my life with that picture. As she crossed the ocean to get here she asked the Lord to explain the picutre and He gave her Psalm 34. In vs 10 the passage says that even a young lion might go hungry BUT the hope comes in as those who trust in the Lord will lack no good thing. There are SO many promises in this text - I would REALLY encourage you to go and read it. fast forward to the night when my dear friend took a break from my sleeping children to come and pray with me. All 3 of us were having a time of intercession for Kyle. When she prayed she spoke of Kyle as having the spirit of a King. When we were done praying the other friend opened her journal to show us a piece of a song that she wrote on her flight over here that spoke of Kyle having the spirit of a King. The confirmations from the God of the whole world, through my very own friends pierced my heart and buried hope in a place that would soon fight desperation, fear, lonliness, and sorrow. So out of hope comes the affection - our little lion.
so back to kangaroo care - you have heard us speak of a leak in kyle's vent. This forces air to rush past his vocal chords and makes a squeeking sound. and if you have ever heard a little lion learning to roar (or have ever watched The Loin King) - they make this sort of sqeeking sound.
So as I held him there listening to that rythmic squeeking I couldn't help but to be reminded of how one day this little lion is going to stand up and ROAR! and all at once I was flooded with what so many of you (Brandon) had been exclaiming - who exactly I was praying to - this is the God that sent food from the sky, made a blind man see, a lame man walk, parted a sea for his people to walk across, rose a man from the dead, calmed an entire raging see. He has promised to restore us. He is the healer, He is the creator, He is my father!
We will shout from the mountain tops of the goodness of our GOD!!!!
Thanksgiving Day was tough - but then again giving thanks sometimes is. However we are thankful for Kyle and for his progress. We are thankful for our Jadon and Jack. We are thankful for all of you as you read, PRAY, and support Kyle and our family.
Please continue to fervently ask God to heal Kyle's brain - to cause the blood to reabsorb into his body perfectly and for the spinal fluid to be able to flow perfectly. Pray for Kyle's lungs to get bigger and stronger and healthier. Ask God to continue protecting his belly and whole gut - keeping it healthy and accepting food. We ask God to grow him and mature him. We ask that God would supernaturally close his PDA - the heart valve. Medicine has not worked. Pray for God to heal Kyle from the infections he has and for constant protection from others.
and one more thing - please continue to give God all the glory for Kyle's life! Share his story and let others know that our God is our savior and healer!
Happy Thanksgiving! - Kelly
Happy Thanksgiving Everyone! Wow - do I have so much to be thankful for this year. It's funny but I am realizing how much perspective plays a part in our lives. Sometimes people are shocked when they come to the hospital and see that we are smiling. We even had one couple say "so... you don't just walk around in devastation all the time? " and the answer is "perspective".
Well - perspecitve mixed with the truth of God. what I mean is - perspecitve is easy when the truth of God is realized. The problem is how rarely the truth of God is realized in our world by God's people today. Don't get me wrong - I'm not all the sudden assuming that b/c I had a baby too early I have arrived and understand - but just that I am learning. I just get to share my learning with all of you! The truth of God says - He is right, He is in control, He has planned our days, He is faithful to complete, He is a healer, a teacher, He loves us, He will work all things for the good of those who are called.
Psalm 34, Psalm 40 - the truth of God. and right now this changes my perspective. So to the questions "how are you guys doing?, How is Kyle today?" I choose to answer from this perspective - from the truth of God burried deep with in me rather than from fear and despair that Satan tries to sew into my life. When I proclaim a good day with a smile on my face - it is b/c the truth of God drives my perspective. That is what I can cling to. So that is just food for thought that I have been thinking on.
We have so much to be thankful for just today with Kyle's update! Our doctors were actually smiling at us today as they gave kyle's report. They feel like he is doing some good things. His oxygen requirements are down, His saturation is up, His lung xray looked better today than it ever has! I mean these are all reasons to shout for JOY from the mountain tops! So please take time tomorrow (or today if you want) and thank God for the healing he is doing in Kyle! Thank him for the doctors and nurses that are being used in Kyle's life - they are AMAZING! Kyle had a good day!
So to our Father in Heaven THANK YOU! ALL GLORY AND HONOR FOREVER TO YOU GOD! and... to all of you Happy Thanksgiving!
Well - perspecitve mixed with the truth of God. what I mean is - perspecitve is easy when the truth of God is realized. The problem is how rarely the truth of God is realized in our world by God's people today. Don't get me wrong - I'm not all the sudden assuming that b/c I had a baby too early I have arrived and understand - but just that I am learning. I just get to share my learning with all of you! The truth of God says - He is right, He is in control, He has planned our days, He is faithful to complete, He is a healer, a teacher, He loves us, He will work all things for the good of those who are called.
Psalm 34, Psalm 40 - the truth of God. and right now this changes my perspective. So to the questions "how are you guys doing?, How is Kyle today?" I choose to answer from this perspective - from the truth of God burried deep with in me rather than from fear and despair that Satan tries to sew into my life. When I proclaim a good day with a smile on my face - it is b/c the truth of God drives my perspective. That is what I can cling to. So that is just food for thought that I have been thinking on.
We have so much to be thankful for just today with Kyle's update! Our doctors were actually smiling at us today as they gave kyle's report. They feel like he is doing some good things. His oxygen requirements are down, His saturation is up, His lung xray looked better today than it ever has! I mean these are all reasons to shout for JOY from the mountain tops! So please take time tomorrow (or today if you want) and thank God for the healing he is doing in Kyle! Thank him for the doctors and nurses that are being used in Kyle's life - they are AMAZING! Kyle had a good day!
So to our Father in Heaven THANK YOU! ALL GLORY AND HONOR FOREVER TO YOU GOD! and... to all of you Happy Thanksgiving!
Tuesday, November 20, 2007
End of day Tuesday... - John
Sorry we didn't write last night. Kyle has had some pretty big days. We did get the word that he had four cultures come back negative in a row! This is great news. This meant that the were going to be able to put back in the new central line (pick line) --- and yes, I totally butchered the real way to spell that --- They did put that in during the wee hours of the morning... Laura (NOT KRISTIN.... see? i told you i would get it right eventually! haha) Laura did a great job with Angie assisting. Thanks to the transport team nurses who have to do these procedures. They must have nerves of steel... I couldn't do that. I would straight up pass out.
Anyway,... this is a great thing to have this line back in. It decreases the number of times they have to stick Kyle with needles, and lowers the risk of infections. He has had some great blood gases until today. BUT, with a few tweaks of the vent, Kyle was back to good before we left. He is tired, though,... you can tell. He had some pretty big cultures taken today. Lots of activity, so hopefully, he will get good rest tonight. Though things seems to be going well, we still have to be in prayer for our little buddy. Though the cultures came back negative, Kyle is still fighting infections. He is on some pretty intense antibiotics right now. They have been able to restart the FFP drip which is for the clot in his heart. They are treating the clot in his heart as if it is infected right now, and will continue to do so for at least 2 weeks, possibly 6. We are still concerned about the blood resolving off his brain well, not obstructing any spinal fluid or blood flow. Kyle still has his clot, we pray it resolves quickly. Good news is they have restarted feeds, so we pray that those increase so that we can fatten him up quickly! Though he has a wicked bad vent leak,... he is actually doing pretty well with his vent today. His oxygen needs were pretty low today, so that is great news! Please continue to pray for him. Be encouraged with us as God is sustaining Kyle and bringing health to his little body,... but please remain diligent with us in prayer. Kyle gets to switch out beds soon,... he will still be in his lexus of a bed, just in a new one! Can you believe this??? The bed Kyle lives in (his fort we call in with Jadon and Jack)... This bed is amazing ridiculous. Children's Miracle Network enabled Children's Memorial to have this bed, so if you ever doubted where the money goes they raise,... here is a worth while effort. This bed can do so much stuff.... regulate temperature, humidity, weight, etc... so so much more... that lexus bed (as our nurses call it) costs the hospital something like $34,000! YIKES! Seems that my little man has expensive tastes.
I know you loved the pics of Jadon meeting Kyle, so I am going to try and post some more of those for you if our blog will cooperate. This is actually my second try at this post,... so... we will see if I can make it work. Thanks for praying with us, for us,... for Kyle. It blesses my heart to know how many people love my little guy through intercession!
Blessings to you ---
john
OK ... tried to post the photos,... didn't want to work... I will try again tomorrow.
sorry.
Monday, November 19, 2007
Technical Difficulties
Hello Folks!
I have heard through the grapevine that there are some people experiencing a little difficulty ordering Tshirts and Cards... I AM SO SORRY!
DON'T GIVE UP! i don't want you to get frustrated and give up, i promise it will be worth it in the end... just stick with me!
first, try the link again... if you are still having problems, quit your browser and start over. If you are still having problems, email me! shaunamaness@gmail.com i will be happy to help you in any way that i can!
i have gotten a ton of orders, so i know it is working, there may be a couple of glitches (it is a computer program with a mind of it's own!) i am doing the best i can, i promise, just please be patient!!
thanks for your time, if you haven't ordered, do so now... so you can have your shirts before Christmas!!
Family & Friends at home & around the Sherrill's: ORDER YOUR SHIRTS NOW... when i see you guys i don't want you to be sad that you don't have your shirt and mad at me!! :) so, do your homework! (you know who you are :))
love to you all!
I have heard through the grapevine that there are some people experiencing a little difficulty ordering Tshirts and Cards... I AM SO SORRY!
DON'T GIVE UP! i don't want you to get frustrated and give up, i promise it will be worth it in the end... just stick with me!
first, try the link again... if you are still having problems, quit your browser and start over. If you are still having problems, email me! shaunamaness@gmail.com i will be happy to help you in any way that i can!
i have gotten a ton of orders, so i know it is working, there may be a couple of glitches (it is a computer program with a mind of it's own!) i am doing the best i can, i promise, just please be patient!!
thanks for your time, if you haven't ordered, do so now... so you can have your shirts before Christmas!!
Family & Friends at home & around the Sherrill's: ORDER YOUR SHIRTS NOW... when i see you guys i don't want you to be sad that you don't have your shirt and mad at me!! :) so, do your homework! (you know who you are :))
love to you all!
Sunday, November 18, 2007
A very big day indeed...
We are on the eve of Kyle being officially a month old! Tomorrow at 10:01 am, Kyle has been here for 1 month!
I am amazed by him. He has grown!... ok, not much, but he has grown. I can tell he is growing a little more each day.
Today was a very big day, indeed.
Today, Jadon and Jack got to come see the hospital where mom and dad spend a lot of time.
We wanted the day to be perfect, so we started it in usual very hectic fashion, trying to get Jadon and Jack ready amongst Kelly and me trying to do the same. For some reason, getting ready for the day at the sherrill house is no real easy thing to accomplish,... but, we finally made it. At that point, it was off for some much needed family fun. We headed toward the cinema to take jadon and jack to see the new "bee movie"... That was a lot of fun. Then, it was off to toys r us to hang out and do a little advance christmas looking,... Jadon managed to thoughtfully contemplate all the things that he saw, some ranging from, "I want this right now, to I want you to get this for me for christmas, to maybe my next birthday I can have this; to... this just cost too much money." He is so funny sometimes the things he comes up with. He did talk me into a Go Diego Go toy that he has been bugging me about for some time, ... I figured that he deserved a little splurge on him, so I caved....... I know right,...? What great parenting the month before christmas.... Then, it was off to the house so jack could nap before the big meeting. Kelly and I headed downtown to get to the hospital in advance and make sure all was well. Kyle was having a great day. One of his new favorite people, Valerie was his nurse this afternoon. His saturation was looking a little better today. There have been no big changes to speak of in his condition for the last few days. He has had two cultures come back negative for infection, so we are praying for one more, maybe two more... this would allow for them to put the central line back in. That would be a good thing. It wasn't long until Brandi and Steven showed up. Brandi is Kyle's primary - primary nurse. Steven is her husband. They are some cool peeps to go see the Texans win the game, and then get up to the hospital as quick as possible to meet Kyle's big brothers! Jadon and Jack showed up soon after. Jack got to hang out and play a little wiht Carol, Nonna, Aunt Stacy, Zack, Sarah, and Jacob. Nonna and Stacy had bought them some cars,... so they had a pre-christmas today... haha... Jadon, Kelly and I headed into a play time session with Child Life. Child LIfe is a group of people who help younger siblings understand what is going on with new brothers/sisters. They brought out a doll that was about Kyle's size. Jadon assured them that he didn't play with dolls, but never the less, when they started breaking out tubes and such, Jadon was all over wanting to learn about what all hardware Kyle had going on. They introduced Jadon to all the tubes and wires and instruments Kyle had helping him before taking him in to see kyle for the first time. It was very touching to watch Jadon throughout this process, as well as the first time he saw Kyle in person. He was so happy to finally, after nearly a month, come see his little brother. Something must have immediately snapped with in him, because almost like instinct took over, Jadon went into big brother mode. He didn't really want to leave, and wanted to know if Kyle
was coming home soon, and because he wasn't coming home today, would he still be in our family?!??!! He was very emphatic about this! We assured him that Kyle was very much a part of our family, and that he would hopefully come home very soon.
We took some pics,... video,... hung out a little, then prayed over baby brother Kyle together. It was an amazing time. Poor Jack couldn't go in... he is too young, but remember, he got some great play time in the lobby. Jack loves to play. I am sure all of Children's Memorial Hermann loved that... haha... (jack knows one speed, and one volume... fast and loud)... : )
We then all headed down to the cafeteria to allow Jadon and Jack to experience the wonder known as hospital food. Yay for us. We had a great time though hanging out and talking and eating dinner together. After that, it was time for Jadon and Jack to be taken home for bed. Miss Carol and Zack took them home, ... and we went back upstairs to check on Kyle and talk with Misty (his primary primary night nurse)... she is too much fun, along with all in Giraffe A pod... HEY AMY, AMANDA and ERICA! (Amy is also one of Kyle's primary nurses, and we are working on Amanda for when she goes to days. : )
Misty quickly asked Kelly if she wanted to Kangaroo care tonight (hold kyle)! Ofcourse, what mommy would say no to that?? So, our quick trip back up turned into a couple more great hours of hanging out with Kyle ( and the fun team from giraffe pod!) Misty is threatening me that next friday night is my night to hold Kyle. We'll see about that. : )
What a great day.... a really great day... and a very big day, indeed.
Please continue to pray for Kyle. I know we say it a lot,.... but we mean it a lot too!
Pray for all these nurses and doctors. They are being the eyes and hands of Jesus to our little guy!
Pray for Kyle's complete healing and wholeness. God has a plan. We are part of it. So are you!
I am amazed by him. He has grown!... ok, not much, but he has grown. I can tell he is growing a little more each day.
Today was a very big day, indeed.
Today, Jadon and Jack got to come see the hospital where mom and dad spend a lot of time.
We wanted the day to be perfect, so we started it in usual very hectic fashion, trying to get Jadon and Jack ready amongst Kelly and me trying to do the same. For some reason, getting ready for the day at the sherrill house is no real easy thing to accomplish,... but, we finally made it. At that point, it was off for some much needed family fun. We headed toward the cinema to take jadon and jack to see the new "bee movie"... That was a lot of fun. Then, it was off to toys r us to hang out and do a little advance christmas looking,... Jadon managed to thoughtfully contemplate all the things that he saw, some ranging from, "I want this right now, to I want you to get this for me for christmas, to maybe my next birthday I can have this; to... this just cost too much money." He is so funny sometimes the things he comes up with. He did talk me into a Go Diego Go toy that he has been bugging me about for some time, ... I figured that he deserved a little splurge on him, so I caved....... I know right,...? What great parenting the month before christmas.... Then, it was off to the house so jack could nap before the big meeting. Kelly and I headed downtown to get to the hospital in advance and make sure all was well. Kyle was having a great day. One of his new favorite people, Valerie was his nurse this afternoon. His saturation was looking a little better today. There have been no big changes to speak of in his condition for the last few days. He has had two cultures come back negative for infection, so we are praying for one more, maybe two more... this would allow for them to put the central line back in. That would be a good thing. It wasn't long until Brandi and Steven showed up. Brandi is Kyle's primary - primary nurse. Steven is her husband. They are some cool peeps to go see the Texans win the game, and then get up to the hospital as quick as possible to meet Kyle's big brothers! Jadon and Jack showed up soon after. Jack got to hang out and play a little wiht Carol, Nonna, Aunt Stacy, Zack, Sarah, and Jacob. Nonna and Stacy had bought them some cars,... so they had a pre-christmas today... haha... Jadon, Kelly and I headed into a play time session with Child Life. Child LIfe is a group of people who help younger siblings understand what is going on with new brothers/sisters. They brought out a doll that was about Kyle's size. Jadon assured them that he didn't play with dolls, but never the less, when they started breaking out tubes and such, Jadon was all over wanting to learn about what all hardware Kyle had going on. They introduced Jadon to all the tubes and wires and instruments Kyle had helping him before taking him in to see kyle for the first time. It was very touching to watch Jadon throughout this process, as well as the first time he saw Kyle in person. He was so happy to finally, after nearly a month, come see his little brother. Something must have immediately snapped with in him, because almost like instinct took over, Jadon went into big brother mode. He didn't really want to leave, and wanted to know if Kyle
was coming home soon, and because he wasn't coming home today, would he still be in our family?!??!! He was very emphatic about this! We assured him that Kyle was very much a part of our family, and that he would hopefully come home very soon.
We took some pics,... video,... hung out a little, then prayed over baby brother Kyle together. It was an amazing time. Poor Jack couldn't go in... he is too young, but remember, he got some great play time in the lobby. Jack loves to play. I am sure all of Children's Memorial Hermann loved that... haha... (jack knows one speed, and one volume... fast and loud)... : )
We then all headed down to the cafeteria to allow Jadon and Jack to experience the wonder known as hospital food. Yay for us. We had a great time though hanging out and talking and eating dinner together. After that, it was time for Jadon and Jack to be taken home for bed. Miss Carol and Zack took them home, ... and we went back upstairs to check on Kyle and talk with Misty (his primary primary night nurse)... she is too much fun, along with all in Giraffe A pod... HEY AMY, AMANDA and ERICA! (Amy is also one of Kyle's primary nurses, and we are working on Amanda for when she goes to days. : )
Misty quickly asked Kelly if she wanted to Kangaroo care tonight (hold kyle)! Ofcourse, what mommy would say no to that?? So, our quick trip back up turned into a couple more great hours of hanging out with Kyle ( and the fun team from giraffe pod!) Misty is threatening me that next friday night is my night to hold Kyle. We'll see about that. : )
What a great day.... a really great day... and a very big day, indeed.
Please continue to pray for Kyle. I know we say it a lot,.... but we mean it a lot too!
Pray for all these nurses and doctors. They are being the eyes and hands of Jesus to our little guy!
Pray for Kyle's complete healing and wholeness. God has a plan. We are part of it. So are you!
Why I Go - Carol
People often tell me how much they appreciate the fact that I am part of the Nannying Team that cares for Jack and Jadon. While I smile and say thank you, I really think to myself, it's only because I COULDN'T do the Hospital Support Team very well. It is really out of selfish protection that I choose Jadon and Jack's care over John, Kelly and Kyle's.
But once a week I go to the hospital. If I am honest with you, I hate going. The days that I go drain me emotionally and make me physically ache, physically. I don't truthfully know how parents in the NICU ride the roller coaster. In one day I watched Kyle struggle for breath more times than I could count. I watched his nurses have to make decisions about how much oxygen to give him, understanding that if they give him too much for too long, he could be blinded because of it, but also understanding that if they don't give him enough, he can suffer brain damage because of it. Multiple times throughout EVERY day, they are making these kinds of decisions. And John and Kelly watch.
But I go. Even though I had to stop and throw up on the way home because of how physically the visit affected me last time. I go. I go because I need to be reminded that all of this is real. It is about a real baby, in a real struggle for life. It isn't just a blog or a story to follow. It is REAL. When I pray over him directly,in real time, it changes the way I pray.
And I go. I go because each week I see his progress and it reminds me of the joy of the Lord. The creator God. Kyle's skin is the prettiest little pink color now. His hair has grown and is a gorgeous brown. His eyes are opened. And each time I go, so are mine.
So I go. If you are reading this today, I am not asking you to go to the hospital. Kyle can't have that many visitors anyway. What I am asking you to do is to REMEMBER, this is a story about a real baby, a real set of parents, two real little boys at home, a real family. And PRAY like it is real!
But once a week I go to the hospital. If I am honest with you, I hate going. The days that I go drain me emotionally and make me physically ache, physically. I don't truthfully know how parents in the NICU ride the roller coaster. In one day I watched Kyle struggle for breath more times than I could count. I watched his nurses have to make decisions about how much oxygen to give him, understanding that if they give him too much for too long, he could be blinded because of it, but also understanding that if they don't give him enough, he can suffer brain damage because of it. Multiple times throughout EVERY day, they are making these kinds of decisions. And John and Kelly watch.
But I go. Even though I had to stop and throw up on the way home because of how physically the visit affected me last time. I go. I go because I need to be reminded that all of this is real. It is about a real baby, in a real struggle for life. It isn't just a blog or a story to follow. It is REAL. When I pray over him directly,in real time, it changes the way I pray.
And I go. I go because each week I see his progress and it reminds me of the joy of the Lord. The creator God. Kyle's skin is the prettiest little pink color now. His hair has grown and is a gorgeous brown. His eyes are opened. And each time I go, so are mine.
So I go. If you are reading this today, I am not asking you to go to the hospital. Kyle can't have that many visitors anyway. What I am asking you to do is to REMEMBER, this is a story about a real baby, a real set of parents, two real little boys at home, a real family. And PRAY like it is real!
Saturday, November 17, 2007
Saturday PM/Sunday 1 am
Today was a good day, a hard day, a frustrating day, an angry day, a happy day, a sad day,...
all in one... It is such a paradox of emotions sometimes -- at any given moment...
emotions, thoughts, and things change.
This is life now.
The new normal.
Wake up,... feel like you just went to bed.
Try your best to maximize any time at all getting things done
that have to be done,... life things,.. banking, chores, blah blah blah...
Try and spend time with the boys that is both quality and quantity...
as much as quantity will allow...
Feel the frustration of them as you begin the process of getting ready
to leave for the hospital...
That one is particularly hard on us...
leave.
arrive about 50 minutes later to the hospital...
live in the perpetual NICU roller coaster up close and personal
for not only yourselves, but also for the community of those like you.
happiness. sadness. anger. unbelief. faith. fear.
Kyle today.
Vitals pretty good. Blood gases, pretty good...
PDA valve - still open... murmer (spelling?) strong...
this is good, so far... means pda is small, but still - present
and making itself known.
Infections -- yes, I said infectionS... plural.
We are now taking 3 antibiotics...
This means there will always be a 3 day setback until we get 3 solid
days of negative blood cultures, we can't get his pik line (it is like a central line)
back in. They had to pull that because it was infected.
So, for now,.. Kyle gets stuck a lot with needles.
This really stinks for him.
Respiration: still desaturating alot. This leak is a real problem.
Despite of the fact that he has the best nurses ever, the leak is still
giving them all fits. He can go from 0% leak to 100% leak in any given day.
This, combined with the PDA makes oxygenation very difficult.
However, so far,... Kyle picks himself back up quickly.
On the positive note:
Kyle has many new girlfriends. He is already a little flirt.
He loves his nurses and so do we!
We share him with Brandi and MIsty for sure! They seem to be
very much smitten with him... Then again, so do so many others...
It is always so comforting to us to see so many of his nurses come around to
just look in on him and check to see how he is doing!
Dr. Lopez seems very hopeful for Kyle... she is so great, and His nurse practitioners
are amazing as well. We do not look forward to the rotation change. We really like
his team.
Kelly got to bathe him again tonight,... and help change his linens.
She got to change diapers today. We watched them carefully change his
tape on his tubes. Mostly, Kyle's vitals and all his numbers have been decent
from all the testing they do...
So, we continue to pray for Kyle's brain... for healing. We pray for protection
for his brain and for protection against further bleeding or PVL.
We pray for Kyle's lungs... That his respiration will get better, and he will stop
the desaturations. We pray for the RDS (respiratory distress syndrome) and BPD
(bronchial pulmonary displaysia) (I think that is what it is called)... to get better.
We pray for good growth and fast development.
We pray for his stomach that they can re-start feeds soon
and that he will digest well. We pray that God will protect Kyle from NEC.
We pray for the PDA to close itself,
and for the blood on his brain to re absorb cleanly, so not to obstruct
any spinal fluid/blood flow.
We pray that God will clear up infections and keep Kyle's cultures coming
back negative from infection so we can restart that line asap!
Thanks for praying. Thanks for encouragement.
Your comments and emails, etc are so encouraging to us.
We get home every night and read your emails, texts, and comments on the blogs.
That has become a lifeline for us over these past 3 weeks.
We can not say thank you enough.
Please pray for Kelly. She is in real need of God's assurance and peace.
blessings on you and yours --
J
all in one... It is such a paradox of emotions sometimes -- at any given moment...
emotions, thoughts, and things change.
This is life now.
The new normal.
Wake up,... feel like you just went to bed.
Try your best to maximize any time at all getting things done
that have to be done,... life things,.. banking, chores, blah blah blah...
Try and spend time with the boys that is both quality and quantity...
as much as quantity will allow...
Feel the frustration of them as you begin the process of getting ready
to leave for the hospital...
That one is particularly hard on us...
leave.
arrive about 50 minutes later to the hospital...
live in the perpetual NICU roller coaster up close and personal
for not only yourselves, but also for the community of those like you.
happiness. sadness. anger. unbelief. faith. fear.
Kyle today.
Vitals pretty good. Blood gases, pretty good...
PDA valve - still open... murmer (spelling?) strong...
this is good, so far... means pda is small, but still - present
and making itself known.
Infections -- yes, I said infectionS... plural.
We are now taking 3 antibiotics...
This means there will always be a 3 day setback until we get 3 solid
days of negative blood cultures, we can't get his pik line (it is like a central line)
back in. They had to pull that because it was infected.
So, for now,.. Kyle gets stuck a lot with needles.
This really stinks for him.
Respiration: still desaturating alot. This leak is a real problem.
Despite of the fact that he has the best nurses ever, the leak is still
giving them all fits. He can go from 0% leak to 100% leak in any given day.
This, combined with the PDA makes oxygenation very difficult.
However, so far,... Kyle picks himself back up quickly.
On the positive note:
Kyle has many new girlfriends. He is already a little flirt.
He loves his nurses and so do we!
We share him with Brandi and MIsty for sure! They seem to be
very much smitten with him... Then again, so do so many others...
It is always so comforting to us to see so many of his nurses come around to
just look in on him and check to see how he is doing!
Dr. Lopez seems very hopeful for Kyle... she is so great, and His nurse practitioners
are amazing as well. We do not look forward to the rotation change. We really like
his team.
Kelly got to bathe him again tonight,... and help change his linens.
She got to change diapers today. We watched them carefully change his
tape on his tubes. Mostly, Kyle's vitals and all his numbers have been decent
from all the testing they do...
So, we continue to pray for Kyle's brain... for healing. We pray for protection
for his brain and for protection against further bleeding or PVL.
We pray for Kyle's lungs... That his respiration will get better, and he will stop
the desaturations. We pray for the RDS (respiratory distress syndrome) and BPD
(bronchial pulmonary displaysia) (I think that is what it is called)... to get better.
We pray for good growth and fast development.
We pray for his stomach that they can re-start feeds soon
and that he will digest well. We pray that God will protect Kyle from NEC.
We pray for the PDA to close itself,
and for the blood on his brain to re absorb cleanly, so not to obstruct
any spinal fluid/blood flow.
We pray that God will clear up infections and keep Kyle's cultures coming
back negative from infection so we can restart that line asap!
Thanks for praying. Thanks for encouragement.
Your comments and emails, etc are so encouraging to us.
We get home every night and read your emails, texts, and comments on the blogs.
That has become a lifeline for us over these past 3 weeks.
We can not say thank you enough.
Please pray for Kelly. She is in real need of God's assurance and peace.
blessings on you and yours --
J
Pray with me - Kelly
Father,
I believe; I have seen miracles with my own eyes; I believe. Oh God - would You, healer and restorer, heal our son? Would You restore him? I have this picture and I believe you gave it to me - I can see him running around in the backyard with is brothers. Shouting and playing - God I beg you - would you not delay? Father protect him. Be his good. Be near to him. Would you minister to Kyle's needs - touch him. That one day he would smell a scent or hear a sound or see a sight that would remind him of You. Would you be so close to him that one day he will actually remember the breath of God!?
a friend sent me a song tonight - manna fell from heavens high - just b/c you told the sky! Science will crush underneath all the weight of what is unseen! Oh God - help me believe. I beg you father - do not delay - hear our cries!
a prayer from the day Kyle was born - shauna
In your name Jesus i ask for the mightiest of heaven's angels to come with the force of all the earths winds... to rage upon kelly and to defend her as she lays there... to take this jeremiah... this warrior child and give him lungs that breathe deep the breath of God... a heart that beats like a lion, and give him eyes that see into the ocean's depths... jesus give this child the determination to live like no child has lived. put fight into his soul, increase his strength and sharpen his mind even as he is moving now... i see a wrest-less lion longing to be free... a man that will change the world. that will be fierce and fearless. Jesus i see a warrior. among his brothers and among the nations.
I believe; I have seen miracles with my own eyes; I believe. Oh God - would You, healer and restorer, heal our son? Would You restore him? I have this picture and I believe you gave it to me - I can see him running around in the backyard with is brothers. Shouting and playing - God I beg you - would you not delay? Father protect him. Be his good. Be near to him. Would you minister to Kyle's needs - touch him. That one day he would smell a scent or hear a sound or see a sight that would remind him of You. Would you be so close to him that one day he will actually remember the breath of God!?
a friend sent me a song tonight - manna fell from heavens high - just b/c you told the sky! Science will crush underneath all the weight of what is unseen! Oh God - help me believe. I beg you father - do not delay - hear our cries!
a prayer from the day Kyle was born - shauna
In your name Jesus i ask for the mightiest of heaven's angels to come with the force of all the earths winds... to rage upon kelly and to defend her as she lays there... to take this jeremiah... this warrior child and give him lungs that breathe deep the breath of God... a heart that beats like a lion, and give him eyes that see into the ocean's depths... jesus give this child the determination to live like no child has lived. put fight into his soul, increase his strength and sharpen his mind even as he is moving now... i see a wrest-less lion longing to be free... a man that will change the world. that will be fierce and fearless. Jesus i see a warrior. among his brothers and among the nations.
Friday, November 16, 2007
Day of Life 25 - Kelly
this is how the rounds start each morning... makes it easy to keep track of the days I guess. you know - yesterday was such a good day. Today was so rough. Kyle is having some struggles - and Kyle is doing well! I know that seems like a contradiction but not in the NICU ... not really! He can be doing good in some areas and rough in others.
Please keep praying! Even thought today was rough, he has his favorite nurses these days and they really make all the difference in the world. They are the reason we can go home at night, or eat lunch during the day! They are kind and gentle and unbelievably brilliant. Even more they are gifted by God (each one of them - it is amazing!). all of this includes his team of NPs and doctors too. It really amazes and humbles me that not only they are so gifted but yet they give every ounce of that to MY son. They use all of their experience, effort and energy to save MY son. It stirs a new measure of gratefulness in me.
Today was tough for me - realizing some fears and facing some deep guilt and regret. I know in my head these are from the enemy and I know in my head these are not truth. and one thing I have learned this past year is that when we begin acting in reality on lies from the enemy we get disaster. So one more day - I survive "but by the grace of God". My husband is my rock, my stability, the Holy Spirit is ministering to me through him. He pours out love and comfort, hope and strength. Strange thing is I have to let him - I have to cling to the grace of God so that I can be ministered to. who ministers to him? Please keep praying for our family, for sweet jadon and jack, for me and for john... and for kyle - for complete restoration.
Thank you again! & for those of you that are with us - thank you for understanding our good days and bad, our hurt and our joy. tonight was just a hurt for me but the Lord promises that joy comes in the morning!
until then goodnight.
Please keep praying! Even thought today was rough, he has his favorite nurses these days and they really make all the difference in the world. They are the reason we can go home at night, or eat lunch during the day! They are kind and gentle and unbelievably brilliant. Even more they are gifted by God (each one of them - it is amazing!). all of this includes his team of NPs and doctors too. It really amazes and humbles me that not only they are so gifted but yet they give every ounce of that to MY son. They use all of their experience, effort and energy to save MY son. It stirs a new measure of gratefulness in me.
Today was tough for me - realizing some fears and facing some deep guilt and regret. I know in my head these are from the enemy and I know in my head these are not truth. and one thing I have learned this past year is that when we begin acting in reality on lies from the enemy we get disaster. So one more day - I survive "but by the grace of God". My husband is my rock, my stability, the Holy Spirit is ministering to me through him. He pours out love and comfort, hope and strength. Strange thing is I have to let him - I have to cling to the grace of God so that I can be ministered to. who ministers to him? Please keep praying for our family, for sweet jadon and jack, for me and for john... and for kyle - for complete restoration.
Thank you again! & for those of you that are with us - thank you for understanding our good days and bad, our hurt and our joy. tonight was just a hurt for me but the Lord promises that joy comes in the morning!
until then goodnight.
Nights - The Nanny Chronicle
While John and Kelly have been speaking of the dark night of the soul, there is a certain element of that which is true for Jadon and Jack as well. Even though they are only 5 and 2, they are living through all of this too. They may not have the same emotions that John and Kelly have, but they have very real moments when they understand that their lives are different.
Nights seem to be the hardest. Especially for Jadon. Once he has been kissed goodnight, and the story has been read. Once his prayers have been said, he begins to ask questions. And sometimes they are hard ones. Tonight he cried and said he missed his mommy and daddy really bad. He asked why he had to have little brothers. He wasn't saying he didn't want little brothers. He was saying with as much emotion as he could muster, that he missed his mom and dad, and he just wanted them. I think for him, it is his dark night. On top of that, his teddy bear was lost and he was sleeping with a substitute bear.
Then at just the right moment (he must have a special "rescue" gene or something), Zack arrived. The last time Jadon had a tough night, Zack showed up. Maybe it's a super hero power (Jadon's are goo and shrink, in case you wondered.) Anyway, Zack found the missing bear. Jadon curled up into a little ball, hugging his bear, smiled and said, "Good night." As I left the room he said, "Miss Carol? Will you ask my mom to wake me up when she gets home so I can tell her what I got out of the treasure box at school?" I assured him I would. He smiled and drifted off to sleep.
Don't forget to pray for Jadon and Jack. Don't forget that this is hard for them too. Jack doesn't know how to put it into words, but I am sure he misses his mom and dad as much as Jadon does. Pray for peace in their little hearts and minds. Pray for unexpected moments of delight and unexpected time with John and Kelly.
Carol
Nights seem to be the hardest. Especially for Jadon. Once he has been kissed goodnight, and the story has been read. Once his prayers have been said, he begins to ask questions. And sometimes they are hard ones. Tonight he cried and said he missed his mommy and daddy really bad. He asked why he had to have little brothers. He wasn't saying he didn't want little brothers. He was saying with as much emotion as he could muster, that he missed his mom and dad, and he just wanted them. I think for him, it is his dark night. On top of that, his teddy bear was lost and he was sleeping with a substitute bear.
Then at just the right moment (he must have a special "rescue" gene or something), Zack arrived. The last time Jadon had a tough night, Zack showed up. Maybe it's a super hero power (Jadon's are goo and shrink, in case you wondered.) Anyway, Zack found the missing bear. Jadon curled up into a little ball, hugging his bear, smiled and said, "Good night." As I left the room he said, "Miss Carol? Will you ask my mom to wake me up when she gets home so I can tell her what I got out of the treasure box at school?" I assured him I would. He smiled and drifted off to sleep.
Don't forget to pray for Jadon and Jack. Don't forget that this is hard for them too. Jack doesn't know how to put it into words, but I am sure he misses his mom and dad as much as Jadon does. Pray for peace in their little hearts and minds. Pray for unexpected moments of delight and unexpected time with John and Kelly.
Carol
Thursday, November 15, 2007
Light in a dark night - Kelly
in the post below (if you have not read it you should!) john talked about the darkest nights of our soul. Strangely enough I have wondered before about the days and nights of our soul. I knew they would not be like the ups and downs of our everyday and I wondered ... wait hang on... - well let me first say this - I love life! those of you that know me, know that. I have the most amazing husband, the most beautiful children, the greatest friends, the closest confidantes, the greatest job (that's you GAIL!), the coolest YMCA, the most fun back yard, volunteer work with 220 that anyone would love to do... and the list goes on - every day life as kelly sherrill is just GREAT! and so back to wondering.... I wondered, could I ever live with a dark night?
and now ... hear I am. and as much as I want to just open up and spill out the horror and sorrow, anger and hurt, lonliness and fear... I would have to say just as much about hope and joy and faith and learning and loving.
so I guess my point is that days are not all bright and nights are not all dark. "God with us" is not just a phrase. He really is. Thank you to all of you that are showing God's love to us. Last night some friends of ours came up to have dinner with us. It was great - she was the second person to comment that we seemed in good spirits. ALL of that to say, but by the grace of God - there is hope and even joy somewhere inside a dark night.
I got to give Kyle his first bath ever tonight. (gauze and very warm water). after you wipe down each part you have to dry it so that he doesn't get to cold and of course he was in his little fort the whole time! but after his bath.... are you ready? ... I got to hold Kyle again - the second time. talk about joy and hope. He even has his own smell. (I will put up pics tomorrow!)
I am exhausted - we will update you all after rounds tomorrow.
Please keep praying for the blood in kyle's brain to resolve appropriately that no spinal fluid flow will be obstructed. We are asking and BELIEVING God for complete restoration and healing in this! Please join us.
I know so many of you are still praying! and will never be able to express the hope that each of your cards, letters, comments, texts, emails, and all the ways many of you are serving our family and our children - how that brings hope to my soul - you all are lights in a dark night of my soul. Thank you.
and now ... hear I am. and as much as I want to just open up and spill out the horror and sorrow, anger and hurt, lonliness and fear... I would have to say just as much about hope and joy and faith and learning and loving.
so I guess my point is that days are not all bright and nights are not all dark. "God with us" is not just a phrase. He really is. Thank you to all of you that are showing God's love to us. Last night some friends of ours came up to have dinner with us. It was great - she was the second person to comment that we seemed in good spirits. ALL of that to say, but by the grace of God - there is hope and even joy somewhere inside a dark night.
I got to give Kyle his first bath ever tonight. (gauze and very warm water). after you wipe down each part you have to dry it so that he doesn't get to cold and of course he was in his little fort the whole time! but after his bath.... are you ready? ... I got to hold Kyle again - the second time. talk about joy and hope. He even has his own smell. (I will put up pics tomorrow!)
I am exhausted - we will update you all after rounds tomorrow.
Please keep praying for the blood in kyle's brain to resolve appropriately that no spinal fluid flow will be obstructed. We are asking and BELIEVING God for complete restoration and healing in this! Please join us.
I know so many of you are still praying! and will never be able to express the hope that each of your cards, letters, comments, texts, emails, and all the ways many of you are serving our family and our children - how that brings hope to my soul - you all are lights in a dark night of my soul. Thank you.
Faith... Sight... Glory of God - John
19 times in the book of Genesis that I can tell, the word sight is found...
Most of these findings are dealing with favor in the sight of the Lord.
Praying Favor,... desiring favor,... asking favor...
At the beginning of Exodus,...
sight is used as showing God's power displayed for the visibility of
men. A burning bush, not being consumed,... favor in the eyes
of men so to have provision, lack of favor in the sight of men,
God's power displayed in the river turning to blood from the
obedience of God's word in action,.. more favor in the sight of
the egyptians, God's power displayed by giving drinking water
(again through obedience in action based on God's command)
The Glory of the Lord showing Himself, back to the favor of God
being desired... Moses asking for the favor of God, to see God...
Common things I am seeing here...
Favor comes through Faith.
God told Moses to do some things. Strike a rock,...
Go in the cleft,... etc... obedience = faith.
Faith = Favor. Favor = Sight.
Abraham and Isaac. Climb the mountain,... worship there...
sacrifice....
Faith displayed through obedience,... even to the point of killing
his own son. God provided a way to save Isaac.
Obedience = Faith. Faith = Favor. Favor = Sight.
Lazuras. Dead. Gone. Jesus told them not to worry
at the beginning of the passage. He went so far to say out loud -
THIS WILL NOT END IN DEATH, then spoke of God's glory...
Sure enough,... circumstances started looking grim.
I think of Abraham having to climb the mountain, not knowing
if God was really going to ask him to go through with it... to really
sacrifice his son... circumstances looked bad. REAL bad.
Still... with each step, he climbed (worked) obedient.
Each step of was a step of faith. I am sure as he got closer
and closer, the journey began being harder and harder.
Can you imagine the conversation he must have been having with God
in his heart? Or even, the thoughts that raced through his head as
his heart pounded in uncertainty... climbing the cliff to the place
where he may be asked to sacrifice the one thing that meant the most
to him?
With each step of faith,... it had to take more obedience to
continue the journey. It had to be harder to trust the one who
called him to the journey. Faithful is He who calls us,... and He will bring it
to pass... Abraham HAD to know God HAD a plan.
Each faith step took more obedience... with more obedience displayed,
more favor was poured out...
Back to Lazarus. So, Jesus calls Lazarus forth.... wakes the dead.
People see the glory of God revealed,... this time, not so much
after obedience displayed, but more so as a teaching,... more so
because Jesus SAID that it would NOT end in death.
Then, Jesus says something that captured my attention.
He said, "Did I not say that if you believed, you would see the Glory
of God?" I have written about this a little in a previous blog,...
Here is what I am convinced of. Sometimes, life just doesn't seem to
work the way we think it should. Sometimes, it may SEEM to us that God
is this mean God calling us into the wilderness of bad circumstances,
seemingly. We tend, in our selfish american way, to get frustrated/angry at God,
before believing that He really does have the best, purest intentions for our
lives,... knowing the provision He has for us, and believing that if we wait
upon the Lord,... take faith steps,... believe,... obey...
we WILL have the favor of the Lord. We Will see the glory of God.
Does this mean that we will always see the results that WE want?
I hate the be the bearer of this news... but no. Sometimes, we won't
receive the answers that we want to see --- immediately.
God always answers. God always has a plan. God will always work things
together for the good. His nearness IS our good.
His nearness comes from our faith, our obedience, our desire -
our brokenness, our hurting, our victory, our defeat, our asking... our seeking.
God has not answered all questions/petitions the way we wanted
WHEN we wanted concerning Kyle.
But, God has answered our prayers... and God IS answering our
prayers. God IS answering your prayers.
Believe.
You have things you are dealing with in your lives, just as we
are dealing with things in ours. We are walking through some of the
darkest nights of our soul. However,... God is good.
No matter what you are asking God for,...even begging God for...
Believe. Walk... journey with God. Trust... have Faith... step,...
one foot in front of the other,... one faith step at a time...obey.
His favor will carry us all. His plan is good.
let me leave you with this.
Seeing God move is usually followed by the showing of our faith first.
Look at this:
Mar 10:52 And Jesus said to him, "Go your way; your faith has made you well."
And immediately he recovered his sight and followed him on the way.
Luk 18:42 And Jesus said to him, "Recover your sight; your faith has made you well."
God's miracle came after the faith was shown... After Belief,... then the workings
of that belief displayed through faith -- then sight.
Today, we seek the face of God, not JUST the hand of God.
We walk by faith. We Believe.
2Cr 5:7 for we walk by faith, not by sight.
By the way,.. Kyle is having a pretty good day. They have stopped feeds for now
because of the infection. Sometimes, when we are sick, we don't feel like a big
meal either,.. so, they are letting his little stomach rest a bit,...
His respiration is still somewhat fluctuating, but holding pretty steady.
He desaturates every now and then a little, which could be his PDA acting up,
but, they aren't too concerned just yet.
They ARE taking out his main line today, which is infected,... so hopefully,
they will get this thing all cleared up in a few days and we can re insert a new
main line. We don't want to stick him over and over with needles if we can avoid it.
We are still praying hard for the blood in his brain. We are believing and asking God
to allow that blood to reabsorb without causing any spinal fluid or blood to be
obstructed in flowing during the process. We need that fluid and blood to be
able to flow freely the way it should so to minimize any damage.
We are praying and believing God to close Kyle's PDA and to help his lungs grow new
and good/unscarred tissue. Pray for his ventilation leak to get better and his O2 needs to
be low. Pray asking God to allow Kyle to blow off enough Carbon Dioxide and to
allow his levels (electrolytes) and his blood sugar/vitals to be good!
Believe with us. Pray,... walk in faith... and let's watch God reveal Himself as He
pours His favor on Kyle and the rest of us.... for His Glory!
Most of these findings are dealing with favor in the sight of the Lord.
Praying Favor,... desiring favor,... asking favor...
At the beginning of Exodus,...
sight is used as showing God's power displayed for the visibility of
men. A burning bush, not being consumed,... favor in the eyes
of men so to have provision, lack of favor in the sight of men,
God's power displayed in the river turning to blood from the
obedience of God's word in action,.. more favor in the sight of
the egyptians, God's power displayed by giving drinking water
(again through obedience in action based on God's command)
The Glory of the Lord showing Himself, back to the favor of God
being desired... Moses asking for the favor of God, to see God...
Common things I am seeing here...
Favor comes through Faith.
God told Moses to do some things. Strike a rock,...
Go in the cleft,... etc... obedience = faith.
Faith = Favor. Favor = Sight.
Abraham and Isaac. Climb the mountain,... worship there...
sacrifice....
Faith displayed through obedience,... even to the point of killing
his own son. God provided a way to save Isaac.
Obedience = Faith. Faith = Favor. Favor = Sight.
Lazuras. Dead. Gone. Jesus told them not to worry
at the beginning of the passage. He went so far to say out loud -
THIS WILL NOT END IN DEATH, then spoke of God's glory...
Sure enough,... circumstances started looking grim.
I think of Abraham having to climb the mountain, not knowing
if God was really going to ask him to go through with it... to really
sacrifice his son... circumstances looked bad. REAL bad.
Still... with each step, he climbed (worked) obedient.
Each step of was a step of faith. I am sure as he got closer
and closer, the journey began being harder and harder.
Can you imagine the conversation he must have been having with God
in his heart? Or even, the thoughts that raced through his head as
his heart pounded in uncertainty... climbing the cliff to the place
where he may be asked to sacrifice the one thing that meant the most
to him?
With each step of faith,... it had to take more obedience to
continue the journey. It had to be harder to trust the one who
called him to the journey. Faithful is He who calls us,... and He will bring it
to pass... Abraham HAD to know God HAD a plan.
Each faith step took more obedience... with more obedience displayed,
more favor was poured out...
Back to Lazarus. So, Jesus calls Lazarus forth.... wakes the dead.
People see the glory of God revealed,... this time, not so much
after obedience displayed, but more so as a teaching,... more so
because Jesus SAID that it would NOT end in death.
Then, Jesus says something that captured my attention.
He said, "Did I not say that if you believed, you would see the Glory
of God?" I have written about this a little in a previous blog,...
Here is what I am convinced of. Sometimes, life just doesn't seem to
work the way we think it should. Sometimes, it may SEEM to us that God
is this mean God calling us into the wilderness of bad circumstances,
seemingly. We tend, in our selfish american way, to get frustrated/angry at God,
before believing that He really does have the best, purest intentions for our
lives,... knowing the provision He has for us, and believing that if we wait
upon the Lord,... take faith steps,... believe,... obey...
we WILL have the favor of the Lord. We Will see the glory of God.
Does this mean that we will always see the results that WE want?
I hate the be the bearer of this news... but no. Sometimes, we won't
receive the answers that we want to see --- immediately.
God always answers. God always has a plan. God will always work things
together for the good. His nearness IS our good.
His nearness comes from our faith, our obedience, our desire -
our brokenness, our hurting, our victory, our defeat, our asking... our seeking.
God has not answered all questions/petitions the way we wanted
WHEN we wanted concerning Kyle.
But, God has answered our prayers... and God IS answering our
prayers. God IS answering your prayers.
Believe.
You have things you are dealing with in your lives, just as we
are dealing with things in ours. We are walking through some of the
darkest nights of our soul. However,... God is good.
No matter what you are asking God for,...even begging God for...
Believe. Walk... journey with God. Trust... have Faith... step,...
one foot in front of the other,... one faith step at a time...obey.
His favor will carry us all. His plan is good.
let me leave you with this.
Seeing God move is usually followed by the showing of our faith first.
Look at this:
Mar 10:52 And Jesus said to him, "Go your way; your faith has made you well."
And immediately he recovered his sight and followed him on the way.
Luk 18:42 And Jesus said to him, "Recover your sight; your faith has made you well."
God's miracle came after the faith was shown... After Belief,... then the workings
of that belief displayed through faith -- then sight.
Today, we seek the face of God, not JUST the hand of God.
We walk by faith. We Believe.
2Cr 5:7 for we walk by faith, not by sight.
By the way,.. Kyle is having a pretty good day. They have stopped feeds for now
because of the infection. Sometimes, when we are sick, we don't feel like a big
meal either,.. so, they are letting his little stomach rest a bit,...
His respiration is still somewhat fluctuating, but holding pretty steady.
He desaturates every now and then a little, which could be his PDA acting up,
but, they aren't too concerned just yet.
They ARE taking out his main line today, which is infected,... so hopefully,
they will get this thing all cleared up in a few days and we can re insert a new
main line. We don't want to stick him over and over with needles if we can avoid it.
We are still praying hard for the blood in his brain. We are believing and asking God
to allow that blood to reabsorb without causing any spinal fluid or blood to be
obstructed in flowing during the process. We need that fluid and blood to be
able to flow freely the way it should so to minimize any damage.
We are praying and believing God to close Kyle's PDA and to help his lungs grow new
and good/unscarred tissue. Pray for his ventilation leak to get better and his O2 needs to
be low. Pray asking God to allow Kyle to blow off enough Carbon Dioxide and to
allow his levels (electrolytes) and his blood sugar/vitals to be good!
Believe with us. Pray,... walk in faith... and let's watch God reveal Himself as He
pours His favor on Kyle and the rest of us.... for His Glory!
Tuesday, November 13, 2007
End of Day Tuesday... - John
End of Tuesday Report – John
We started the day with hanging out with the boys and some cartoons.
There’s nothing like a little Curious George in the morning with Jadon.
I would say Jack too, but well, Jack’s attention span can’t even handle more
than 15 minutes of the wiggles (which HE LOVES)… so, what makes me think he will dig Curious George for 30 minutes?
None the less, it was great to just try to recapture of few minutes of what normal use to look like before Oct. 22. Don’t get me wrong… I wouldn’t change anything for the world, unless I could help Kyle stay in his womb,… but I couldn’t, so I will take where I am today over the alternative of not having Kyle in our family.
Jadon loved hanging out and sitting together watching a cartoon, but not as much as I did.
We then headed off to the mall for haircuts and carousel rides. I learned a little something about me,… this is new,… different… I have never experienced this before,
Until today, which is further cause to realize I am getting, well,… OLD.
CAROUSEL RIDES just about make me want to throw up.
Yep, it is true. (I use to be able to do the looping starship at astroworld, for those of you who remember the looping starship, let alone, astroworld.) …
See? OLD. I think it was the round and round and round and ROUND… ugh,…
I was so glad for that to be over. We then headed off to our favorite family restaurant Kobe Japanese Steakhouse for lunch. One must go there for lunch because it is like 1/3 of the price of dinner for the same food. It absolutely rocks the free world and is one of the best restaurants of all time. I highly recommend it. It will change your life, your family, everything…
Haha…
Anyway,… I want to take a few minutes to say thanks to all of you who are caring and praying and giving. So many of you are doing so much from keeping up with our writings daily, to praying, to organizing prayer chains and prayer events,… to spreading the word about Kyle… You are using your giftedness to give, and that makes us feel so loved and embraced in a time that we would have never fathomed a few short days ago.
When we feel like our world has nearly caved in, you have stepped in and helped and have given, and you continue to give… From taking care of our kids, to playing with our kids, to dropping off secret presents for the boys,… that is amazing. From grocery shopping to making meals,… visits, phone calls, text messages, voicemails… comments on our blog, comments of encouragement and prayer on our caringbridge site,… all this means so much to Kelly and me. Organizing fund raisers and benefits like the Tshirts and cards and from what I am hearing pray for kyle bracelets… as reminders and fundraisers to help our family in this time… we are so blessed by you all and amazed at how God is using you to “hold up our arms” right now… You are praying, caring, loving, giving, sharing, helping … I can not say thank you enough, and I am barely scratching the surface of all the things we have been hearing about going on behind the scenes.
Thank you from our family,… Thank you so so so much. It again, overwhelms me, and makes me so humbly grateful at true community in Christ. Thanks for the visits, the meals at the hospital, the gift cards!!! The meals being prepared and brought to our house for us late at night, and for the boys... thank you all so much!
Ok,… ok… I know. You want to know about Kyle.
Kyle had a hard day today with his respiration. Please pray specifically for Kyle’s lungs. Pray for him to be healed from RDS (respiratory distress syndrome) And from BPD
(Bronchial pulmonary disease – *I think it is called this)…
Pray for new lung tissue to be developed quickly, supernaturally…
Pray God’s favor over Kyle’s lungs and his breathing. Pray for Kyle’s PDA to close for good.
We are close to finding the source of this infection. It could either be one of two things:
1. An infection in his main line. This line feeds Kyle a lot of stuff… TPN (his nutrition), medication, etc… so, we need this to clear up asap!
2. Could be infection in the clot in Kyle’s heart that is causing the problem.
Neither one of these options are great, but both are treatable.
Pray that this infection goes away, very very quickly.
Be bold. Believe with us. Pray asking and expecting God to Heal Kyle of these things.
Ask with boldness and assurance that He who began this work in Kyle will be faithful to complete it. Pray and believe with us, will you?
Other than that… Kyle’s urine output is better today! He is growing a little more each day! I think he is becoming quite the charmer as it seems he has made a few girlfriends out of many nurses there at the NICU. He is a cutie.
We are so thankful to all of you, and we are so thankful to the team behind Kyle’s care at Children’s Memorial Hermann. There are some seriously great people up there. From the doctors, to the Nurse Practitioners, to the nurses,… the Respiratory Therapists, etc etc etc etc… there is a whole TEAM of people that God is using in great ways to give Kyle the best care possible.
We are so thankful. With Thanksgiving coming upon us,… I am truly taking a step back and zooming out on our life and our family and seeing so many things that I am truly grateful for. I am sure I will be speaking more about these things in the days to come.
Grace and Peace to all of you … thank you so much. We are so blessed.
We started the day with hanging out with the boys and some cartoons.
There’s nothing like a little Curious George in the morning with Jadon.
I would say Jack too, but well, Jack’s attention span can’t even handle more
than 15 minutes of the wiggles (which HE LOVES)… so, what makes me think he will dig Curious George for 30 minutes?
None the less, it was great to just try to recapture of few minutes of what normal use to look like before Oct. 22. Don’t get me wrong… I wouldn’t change anything for the world, unless I could help Kyle stay in his womb,… but I couldn’t, so I will take where I am today over the alternative of not having Kyle in our family.
Jadon loved hanging out and sitting together watching a cartoon, but not as much as I did.
We then headed off to the mall for haircuts and carousel rides. I learned a little something about me,… this is new,… different… I have never experienced this before,
Until today, which is further cause to realize I am getting, well,… OLD.
CAROUSEL RIDES just about make me want to throw up.
Yep, it is true. (I use to be able to do the looping starship at astroworld, for those of you who remember the looping starship, let alone, astroworld.) …
See? OLD. I think it was the round and round and round and ROUND… ugh,…
I was so glad for that to be over. We then headed off to our favorite family restaurant Kobe Japanese Steakhouse for lunch. One must go there for lunch because it is like 1/3 of the price of dinner for the same food. It absolutely rocks the free world and is one of the best restaurants of all time. I highly recommend it. It will change your life, your family, everything…
Haha…
Anyway,… I want to take a few minutes to say thanks to all of you who are caring and praying and giving. So many of you are doing so much from keeping up with our writings daily, to praying, to organizing prayer chains and prayer events,… to spreading the word about Kyle… You are using your giftedness to give, and that makes us feel so loved and embraced in a time that we would have never fathomed a few short days ago.
When we feel like our world has nearly caved in, you have stepped in and helped and have given, and you continue to give… From taking care of our kids, to playing with our kids, to dropping off secret presents for the boys,… that is amazing. From grocery shopping to making meals,… visits, phone calls, text messages, voicemails… comments on our blog, comments of encouragement and prayer on our caringbridge site,… all this means so much to Kelly and me. Organizing fund raisers and benefits like the Tshirts and cards and from what I am hearing pray for kyle bracelets… as reminders and fundraisers to help our family in this time… we are so blessed by you all and amazed at how God is using you to “hold up our arms” right now… You are praying, caring, loving, giving, sharing, helping … I can not say thank you enough, and I am barely scratching the surface of all the things we have been hearing about going on behind the scenes.
Thank you from our family,… Thank you so so so much. It again, overwhelms me, and makes me so humbly grateful at true community in Christ. Thanks for the visits, the meals at the hospital, the gift cards!!! The meals being prepared and brought to our house for us late at night, and for the boys... thank you all so much!
Ok,… ok… I know. You want to know about Kyle.
Kyle had a hard day today with his respiration. Please pray specifically for Kyle’s lungs. Pray for him to be healed from RDS (respiratory distress syndrome) And from BPD
(Bronchial pulmonary disease – *I think it is called this)…
Pray for new lung tissue to be developed quickly, supernaturally…
Pray God’s favor over Kyle’s lungs and his breathing. Pray for Kyle’s PDA to close for good.
We are close to finding the source of this infection. It could either be one of two things:
1. An infection in his main line. This line feeds Kyle a lot of stuff… TPN (his nutrition), medication, etc… so, we need this to clear up asap!
2. Could be infection in the clot in Kyle’s heart that is causing the problem.
Neither one of these options are great, but both are treatable.
Pray that this infection goes away, very very quickly.
Be bold. Believe with us. Pray asking and expecting God to Heal Kyle of these things.
Ask with boldness and assurance that He who began this work in Kyle will be faithful to complete it. Pray and believe with us, will you?
Other than that… Kyle’s urine output is better today! He is growing a little more each day! I think he is becoming quite the charmer as it seems he has made a few girlfriends out of many nurses there at the NICU. He is a cutie.
We are so thankful to all of you, and we are so thankful to the team behind Kyle’s care at Children’s Memorial Hermann. There are some seriously great people up there. From the doctors, to the Nurse Practitioners, to the nurses,… the Respiratory Therapists, etc etc etc etc… there is a whole TEAM of people that God is using in great ways to give Kyle the best care possible.
We are so thankful. With Thanksgiving coming upon us,… I am truly taking a step back and zooming out on our life and our family and seeing so many things that I am truly grateful for. I am sure I will be speaking more about these things in the days to come.
Grace and Peace to all of you … thank you so much. We are so blessed.
A Good Day for Brotherhood - The Nanny Chronicles
Today Jadon was such a sweet big brother. This afternoon, he was playing baseball with Ms. Traci and Jack. Jadon was giving Traci instructions on how to stand and where to hold the bat when Jack walked by holding a ball. Jadon asked him if he wanted to help him pitch the pall. Jack said yes. So Jadon had him come stand in front of him and first Jadon threw the ball. Then he had Jack help him hold the ball and they threw it together. It was so cute! That was followed by eating popsicles, swinging around til we were so dizzy we couldn't stand (and then did it
again) and had piggy-back (horsey) rides.
Later in the evening, the boys and Ms. Carol played hide and seek. Jadon demonstrated the victory dance to Jack, who immediately copied his brother's movements. It was hysterical. Jadon later "modeled" for Jack how to answer Ms. Carol when she asked him to eat his noodles. "Why yes Ms. Carol, I WILL eat my noodles." It was highly dramatic, making it very difficult to keep a straight face. Then at bath time, Jadon pulled the stool over to the bathtub so he could help by giving Jack his bath. It was a good day for Brotherhood.
At bedtime, Jadon let me know that he hung out with his mom and dad, got his hair cut (he sang the "SnipIts" song) and he let me know he ate lunch at Kobe. (I think John told him to say that, just so I'd be bitter!) Finally we prayed. When I asked Jadon who he wanted to pray for he said, "Duh. Kyle and Jack!" It was indeed, a good day for brotherhood.
again) and had piggy-back (horsey) rides.
Later in the evening, the boys and Ms. Carol played hide and seek. Jadon demonstrated the victory dance to Jack, who immediately copied his brother's movements. It was hysterical. Jadon later "modeled" for Jack how to answer Ms. Carol when she asked him to eat his noodles. "Why yes Ms. Carol, I WILL eat my noodles." It was highly dramatic, making it very difficult to keep a straight face. Then at bath time, Jadon pulled the stool over to the bathtub so he could help by giving Jack his bath. It was a good day for Brotherhood.
At bedtime, Jadon let me know that he hung out with his mom and dad, got his hair cut (he sang the "SnipIts" song) and he let me know he ate lunch at Kobe. (I think John told him to say that, just so I'd be bitter!) Finally we prayed. When I asked Jadon who he wanted to pray for he said, "Duh. Kyle and Jack!" It was indeed, a good day for brotherhood.
T SHIRTS ARE READY TO ORDER!
The Kyle Sherrill Benefit TShirt has been designed!
Bryan did a GREAT JOB!! check out his work here!
OK all you sweet folks who emailed me about these tshirts...
ORDER AWAY!
these would be great Christmas Gifts!! Send the Kyle benefit cards as Christmas cards and Tshirts
as Christmas presents!! (it will be a little lion Christmas!)
Please remember that all monies raised will go directly into the
Bank of America Kyle Sherrill Medical Fund to help cover growing
expenses for Kyle and the Sherrill family!
The prices are suggested donation prices, but if you want to give more,
feel free to click on the donate link.
Order the shirts and cards through the order link.
Thanks for supporting this cause!
click here! to order your tshirts!!
Monday, November 12, 2007
End of Day Monday Report... 3 weeks old! - John
Monday Report
Day of life 21…
21!!! 3 weeks old officially, today!
Kyle had a good day today, in spite of developing an infection last night. Most of the day was waiting, and watching. There was an echocardiogram follow up test this morning. They were looking at Kyle’s blood clot and PDA valve.
We waited for a long time, and sometime around the 6:00 hour, Kelly (the NP)
(nurse practitioner) came in with a smile and said, “it didn’t even say marginally,… it just said SMALLER.” HUGE PRAISE! The blood clot in Kyle’s heart is smaller!
What a great thing God is doing.
All day, Brandi (his primary nurse) worked with Kyle and his vent. Kyle was doing great at about 35% oxygen. His blood gases were looking pretty good all day, and he pooped twice! YAY! There we go with that excitement over poop thing…. I feel like jr high ministry all over again… His urination also improved a little today (which is what led to suspicion of infection when he stopped going #1…
He even did the typical little boy thing … when you take off the diaper,… there he goes. He managed to mess up his bed that way, and we didn’t get a good measurement of his pee. Not very nice for poor Brandi who had to change that bed. : )
Our main concerns right now are as follows:
PDA valve still open a little – interesting dilemma here because he has had 2 rounds of the medicine that should close that valve. (it is, from what I read, the equivalent of an aspirin - in small dosage of course)… The next step would be surgery to close it.
This sounds scary, and it is, … but, they say around the NICU that it is a common procedure. Our problem is Kyle is too small for the surgery. Dr. Lopez, (who is great and we really like her care for Kyle) is not comfortable with the surgery on Kyle till he is a little bigger. If this PDA would close for good, this could help some of Kyle’s respiratory issues… speaking of that…
BPD – this is dealing with Kyle’s chronic lung disease that we know he suffers from.
This also deals with his ventilator. One problem here is we need the vent. Right now, it is really helping Kyle, but it also hurts him. It scars his lung tissue, damaging it, further irritating and causing worse BPD. (I think this stands for Bronchial Pulmonary Displaysia) don’t hold me to that long word.) The other big issue is the tube for the vent that is going down Kyle’s throat. It is leaking, causing a need sometimes for higher oxygen numbers than necessary for Kyle. The tube that is providing respiration for Kyle right now is too small for Kyle’s growing esophagus, but the tube that is the next size up is too big for his small esophagus – so we have to wait and deal with the tube size as is LEAK and all… this isn’t great… in the course of an hour, he can have as little as a 20% leak, and as high as a 90% leak… YIKES. This means higher O2 to help keep Kyle saturated (or oxygenated) appropriately. Higher O2 for long periods of time are necessary, but also damaging. It can cause a disease called ROP dealing with the Retina of his eyes. This can lead to vision problems, even blindness. The other thing we have to watch is Kyle’s saturation (oxygenation)… if he doesn’t get the oxygen he needs to his body (brain) this can be just as damaging to his development and his brain as the bleeds in his head.
Infections: This is no good for any baby, much less a baby born 17 weeks before he should have been weighing in at a beefy 1 pound… We continue to pray protection for Kyle against infections.
IVH Brain Bleeds: We think this is behind us now barring some unforeseen, unusual circumstances. We landed at a bilateral grade 3 on both sides. Could be better, could be worse. The Doctors both don’t think Kyle has developed PVL from these bleeds. (I have no idea what this acronym stands for… I just know we don’t want it.) This is a good thing that they don’t see PVL. The blood appears to have organized and is on it’s way to being re absorbed back into Kyle’s blood stream. We have to continue to pray that as it reabsorbs, that it doesn’t obstruct any spinal fluid flow. We pray that all blood and spinal fluid would have free flow to do what it is they need to do in Kyle’s body.
All in all, today was good. We are here. Kyle is 21 days older than they expected, and God is doing a great work. I meet new families everyday. My heart hurts for them and the struggles their little guys and girls are going through.
As you pray for Kyle,… please also pray for:
Tyler and Marshall.
These two little guys are in need of God’s supernatural touch as well.
Pray for Tom and Borra, and Phil and Jeanna. These are the parents of these little guys.
We keep praying for God’s healing touch on Kyle’s little body, …
His heart, his lungs, his kidneys, his stomach, his brain… his whole body.
Thank you for journeying with us. It is a marathon. I know…
It is so great to read your encouraging comments, emails, … hearing your voicemails, prayers,… and seeing you at the hospital. Thank you for all of that. It means a lot to Kelly and me.
More later.
Day of life 21…
21!!! 3 weeks old officially, today!
Kyle had a good day today, in spite of developing an infection last night. Most of the day was waiting, and watching. There was an echocardiogram follow up test this morning. They were looking at Kyle’s blood clot and PDA valve.
We waited for a long time, and sometime around the 6:00 hour, Kelly (the NP)
(nurse practitioner) came in with a smile and said, “it didn’t even say marginally,… it just said SMALLER.” HUGE PRAISE! The blood clot in Kyle’s heart is smaller!
What a great thing God is doing.
All day, Brandi (his primary nurse) worked with Kyle and his vent. Kyle was doing great at about 35% oxygen. His blood gases were looking pretty good all day, and he pooped twice! YAY! There we go with that excitement over poop thing…. I feel like jr high ministry all over again… His urination also improved a little today (which is what led to suspicion of infection when he stopped going #1…
He even did the typical little boy thing … when you take off the diaper,… there he goes. He managed to mess up his bed that way, and we didn’t get a good measurement of his pee. Not very nice for poor Brandi who had to change that bed. : )
Our main concerns right now are as follows:
PDA valve still open a little – interesting dilemma here because he has had 2 rounds of the medicine that should close that valve. (it is, from what I read, the equivalent of an aspirin - in small dosage of course)… The next step would be surgery to close it.
This sounds scary, and it is, … but, they say around the NICU that it is a common procedure. Our problem is Kyle is too small for the surgery. Dr. Lopez, (who is great and we really like her care for Kyle) is not comfortable with the surgery on Kyle till he is a little bigger. If this PDA would close for good, this could help some of Kyle’s respiratory issues… speaking of that…
BPD – this is dealing with Kyle’s chronic lung disease that we know he suffers from.
This also deals with his ventilator. One problem here is we need the vent. Right now, it is really helping Kyle, but it also hurts him. It scars his lung tissue, damaging it, further irritating and causing worse BPD. (I think this stands for Bronchial Pulmonary Displaysia) don’t hold me to that long word.) The other big issue is the tube for the vent that is going down Kyle’s throat. It is leaking, causing a need sometimes for higher oxygen numbers than necessary for Kyle. The tube that is providing respiration for Kyle right now is too small for Kyle’s growing esophagus, but the tube that is the next size up is too big for his small esophagus – so we have to wait and deal with the tube size as is LEAK and all… this isn’t great… in the course of an hour, he can have as little as a 20% leak, and as high as a 90% leak… YIKES. This means higher O2 to help keep Kyle saturated (or oxygenated) appropriately. Higher O2 for long periods of time are necessary, but also damaging. It can cause a disease called ROP dealing with the Retina of his eyes. This can lead to vision problems, even blindness. The other thing we have to watch is Kyle’s saturation (oxygenation)… if he doesn’t get the oxygen he needs to his body (brain) this can be just as damaging to his development and his brain as the bleeds in his head.
Infections: This is no good for any baby, much less a baby born 17 weeks before he should have been weighing in at a beefy 1 pound… We continue to pray protection for Kyle against infections.
IVH Brain Bleeds: We think this is behind us now barring some unforeseen, unusual circumstances. We landed at a bilateral grade 3 on both sides. Could be better, could be worse. The Doctors both don’t think Kyle has developed PVL from these bleeds. (I have no idea what this acronym stands for… I just know we don’t want it.) This is a good thing that they don’t see PVL. The blood appears to have organized and is on it’s way to being re absorbed back into Kyle’s blood stream. We have to continue to pray that as it reabsorbs, that it doesn’t obstruct any spinal fluid flow. We pray that all blood and spinal fluid would have free flow to do what it is they need to do in Kyle’s body.
All in all, today was good. We are here. Kyle is 21 days older than they expected, and God is doing a great work. I meet new families everyday. My heart hurts for them and the struggles their little guys and girls are going through.
As you pray for Kyle,… please also pray for:
Tyler and Marshall.
These two little guys are in need of God’s supernatural touch as well.
Pray for Tom and Borra, and Phil and Jeanna. These are the parents of these little guys.
We keep praying for God’s healing touch on Kyle’s little body, …
His heart, his lungs, his kidneys, his stomach, his brain… his whole body.
Thank you for journeying with us. It is a marathon. I know…
It is so great to read your encouraging comments, emails, … hearing your voicemails, prayers,… and seeing you at the hospital. Thank you for all of that. It means a lot to Kelly and me.
More later.
Sunday, November 11, 2007
Praying for healing from infection - Kelly
Thank you so much to all of you who are helping out in this time. It is actually hard to say thank you b/c in my mind, that just doesn't offer each of you enough. There is no amount of anything that could express how grateful I am to those of you that are helping me love my children, and to those of you that are loving me and john. I was telling john tonight that I think this feels so hard b/c as a mom I am made to take my child and care for him. It is my job to keep him warm and my job to feed him and my job to make sure he doesn't get sick and my job to hold him and talk to him and love him. and right now - little of that is reality for us. I just can't do those things for him. I have to leave him and trust his nurses to do all of it. and WOW - these nurses (especially his favorite ones) are COMPLETELY capable - but something in me just screams "this is my job!"
My prayer for me and john is that God will grow our belief, our faith, our hope and our trust.
UPDATE on KYLE - He needs your prayers again - specific ones. Maybe I should say still instead of again. either way..
The doctors think that kyle has an infection. The are not sure what it is yet. He is not going tee tee and his belly is swollen. They have suspended his feedings and put him on antibiotics. They will of course be watching him all through the night and will hope to know something in 24 hours.
We really don't get much of a break for celebration before it is on to the next life threatening crisis. IT IS SO STRANGE THAT THIS IS REALITY! It is so lonely, so scary, so unfair... if I might stomp my feet and whine for a moment! But it is our reality and honestly I wouldn't trade it for the world - I LOVE my little lion. He really is filling out in his face - getting more adorable each day.
PLEASE pray for Kyle! Pray for God's healing in this infection. We have an echo tomorrow to look at the blood clot. Pray and ask the Lord to continue shrinking this and healing Kyle's heart. they will also look at the PDA - we are asking the Lord to close this supernaturally. They will not do surgery on Kyle b/c he is too small and not infection free. please ask the Lord to do this for him. Pray and ask the Lord to heal his kidneys so that Kyle will start going tee tee again and his belly will go down. He really needs to be healthy in his gut so he can eat and get bigger. This is his best friend for growing healthy lungs!
Continue to pray God's protection over his brain... for it to be resillient to these bleeds... that the blood would continue
to be reabsorbed into Kyle's body, and that in the process, his spinal fluids would flow freely and the blood will flow freely, so not to cause any damage! Pray that Kyle does not develope PVL. Pray for healing in his brain.
Pray for Kyle's lungs. We don't want to sound like a broken record here, but we are asking God to help Kyle to grow healthy
new lung tissue and that this BPD disease won't continue to bog Kyle down. Pray that Kyle can keep the fluid off his lungs, and that he can blow off the carbon dioxide better! Pray that Kyle's lungs will heal and get stronger!
Pray protection from NEC, and that Kyle's digestive system would stay strong and healthy.
Thank you again for your encouragement - your words and deeds. May God bless each of you with more of Him!
My prayer for me and john is that God will grow our belief, our faith, our hope and our trust.
UPDATE on KYLE - He needs your prayers again - specific ones. Maybe I should say still instead of again. either way..
The doctors think that kyle has an infection. The are not sure what it is yet. He is not going tee tee and his belly is swollen. They have suspended his feedings and put him on antibiotics. They will of course be watching him all through the night and will hope to know something in 24 hours.
We really don't get much of a break for celebration before it is on to the next life threatening crisis. IT IS SO STRANGE THAT THIS IS REALITY! It is so lonely, so scary, so unfair... if I might stomp my feet and whine for a moment! But it is our reality and honestly I wouldn't trade it for the world - I LOVE my little lion. He really is filling out in his face - getting more adorable each day.
PLEASE pray for Kyle! Pray for God's healing in this infection. We have an echo tomorrow to look at the blood clot. Pray and ask the Lord to continue shrinking this and healing Kyle's heart. they will also look at the PDA - we are asking the Lord to close this supernaturally. They will not do surgery on Kyle b/c he is too small and not infection free. please ask the Lord to do this for him. Pray and ask the Lord to heal his kidneys so that Kyle will start going tee tee again and his belly will go down. He really needs to be healthy in his gut so he can eat and get bigger. This is his best friend for growing healthy lungs!
Continue to pray God's protection over his brain... for it to be resillient to these bleeds... that the blood would continue
to be reabsorbed into Kyle's body, and that in the process, his spinal fluids would flow freely and the blood will flow freely, so not to cause any damage! Pray that Kyle does not develope PVL. Pray for healing in his brain.
Pray for Kyle's lungs. We don't want to sound like a broken record here, but we are asking God to help Kyle to grow healthy
new lung tissue and that this BPD disease won't continue to bog Kyle down. Pray that Kyle can keep the fluid off his lungs, and that he can blow off the carbon dioxide better! Pray that Kyle's lungs will heal and get stronger!
Pray protection from NEC, and that Kyle's digestive system would stay strong and healthy.
Thank you again for your encouragement - your words and deeds. May God bless each of you with more of Him!
So Many to Thank - The Nanny Chronicle
Tomorrow will be three weeks since Kyle was born. Three weeks! Time has gone by quickly at times, and at others, it has dragged by. Typically the days we are waiting for test results are the slow days. But what a blessing that it has been three weeks. God is so faithful. Continue to pray for all of Kyle's needs . . . his lungs, his pda, his blood clot, his digestion, his brain.
Back on the home front, an army of people have demonstrated the purest example of biblical community. Because there is no possible way to thank each of you individually, we thought we would thank you by sharing some of the many ways people have been the church, the community we are called to be.
First, through prayer. This is the most important thing you can do. Since we posted the list of practical needs last Wednesday, the number of participants in Kyle's prayer wall has DOUBLED!
Secondly, financially. People have sent gift cards, grocery cards, donated online and through Wells Fargo and Bank of America. What amazing generosity. People who don't even really know the Sherrill Family at all have given.
And then there are the meals, prepared every other day by an army of strangers. Literally people that only know "of" the Sherrills are delivering meals. There's the teacher who wants to make Jadon and Jack's lunch on school days. The offers to mow the yard. The gifts left on the porch. The organizing of benefits!
There are the friends who do the laundry, buy the groceries, clean the house, care for the boys, and run the errands. There are friends who show up at the right moment to help Jadon and Jack through a tough time by building a fort or reading a story. This weekend a friend even flew here from Colorado to help watch the boys!
There's the babysitter who used to get paid for watching Jadon and Jack, and now she does it for free, faithfully, one afternoon every week and then whenever else she is needed.
So many are doing so much. Thank you. This is a long journey that John and Kelly and Jadon and Jack and Kyle are on. It is such an encouragement for them to know they have you to support them through it. Continue to pray for all of them. Every Day. Every moment they cross your mind.
Thanks,
The Nannies
Back on the home front, an army of people have demonstrated the purest example of biblical community. Because there is no possible way to thank each of you individually, we thought we would thank you by sharing some of the many ways people have been the church, the community we are called to be.
First, through prayer. This is the most important thing you can do. Since we posted the list of practical needs last Wednesday, the number of participants in Kyle's prayer wall has DOUBLED!
Secondly, financially. People have sent gift cards, grocery cards, donated online and through Wells Fargo and Bank of America. What amazing generosity. People who don't even really know the Sherrill Family at all have given.
And then there are the meals, prepared every other day by an army of strangers. Literally people that only know "of" the Sherrills are delivering meals. There's the teacher who wants to make Jadon and Jack's lunch on school days. The offers to mow the yard. The gifts left on the porch. The organizing of benefits!
There are the friends who do the laundry, buy the groceries, clean the house, care for the boys, and run the errands. There are friends who show up at the right moment to help Jadon and Jack through a tough time by building a fort or reading a story. This weekend a friend even flew here from Colorado to help watch the boys!
There's the babysitter who used to get paid for watching Jadon and Jack, and now she does it for free, faithfully, one afternoon every week and then whenever else she is needed.
So many are doing so much. Thank you. This is a long journey that John and Kelly and Jadon and Jack and Kyle are on. It is such an encouragement for them to know they have you to support them through it. Continue to pray for all of them. Every Day. Every moment they cross your mind.
Thanks,
The Nannies
Kyle Sherrill Benefit!
Hello Kyle Sherrill supporters! I need your help! This is Shauna and I am back in Germany trying to organize a few of benefits for Kyle's Medical Fund.I need your help! I am working on Three things...
#1 T-shirts (how many of you will be interested in ordering???)
#2 really groovy stationary with the image of the Lion above (named KYLE, taken by my husband) on it.
5x7 folded cards 15 cards/envelopes $20
the idea with stationary is that the word will spread as you send your cards... so buy a ton and send away!!
#3 artist donations (as an artist you would donate your time, or your work to be purchased with the profits going to kyle's medical fund) not sure what to donate? send me an email and i will visit with you!
i really need some feedback! send me an email shaunamaness@gmail.com or leave me a comment on my blog!
i want to get these ordered ASAP so that you guys can have them before Christmas!! so let me know!!
if you have any other benefit ideas, please share them... i will make them happen if i can!!
Saturday, November 10, 2007
11/10 - Kelly
As you can imagine I have recieved much advice over the past 19 days.
Hang on.. speaking of 19 days ... each morning when we meet with the doctors over rounds, our NP is presenting Kyle to the Attending doctor and they always start out the same. "Kyle Sherrill, day of life 19" or what ever day it is. This morning that statement really hit me - It has been 19 days since he was born! He is almost 3 weeks old! On one hand I couldn't believe he was already 19 days old. I couldn't believe that 3 weeks have flown by. on the other hand - I can't believe it has only been 19 days that we are only 3 weeks into this journey. Part of me wants to wonder how I will make it, how my husband will withstand, and how Jadon and Jack will endure for so many more. I am starting to feel what john talked about when he bloged about life going on for others. Our life goes on too - it is just so different. I guess in someways I feel left behind or incomplete. maybe under construction would be a better way to describe it. but God is so good b/c ... back to the advice comment from above...
I have received much advice - little that I have taken, and heard many stories, many of which I never needed to hear! - but to each I have this response inside that i usually keep to myself (working on being PC here) ANYWAY - but tonight I spoke to my friend and she was sharing about when her husband read the blog about kyle's brain scan. She said he was just about doing cartwheels around the house. He has some advice for me and for everyone really. BELIEVE! Pray and believe. He said that all he could do from where he was ... was pray and believe. and then he said this "Even if were the only one that begged God to save Kyle and believed he will - it would be enough." He said he wished he could look at john and I and tell us that every second. so that we could know.
it was then I realized that my fear really is a spiritual battle; a robbery of my belief. another friend shared with me the story of Elijah the other day and how he poured water on his offering and called on the Lord to set it on fire. God did. In the next passage or so this same man who has experienced the AWESOME POWER of GOD is running for his life - literaly - in fear.
and what she said was that God is the same - His is constant, powerful, faithful to his own character - We are the ones that waiver, we are the ones that are not constant. I have seen the Lord to miracles. I have seen Him heal. I have seen the AWESOME POWER of GOD. and so now how can I run in fear? How is it possible that I (ME - the one who has seen God display his power) could be tormented with fear. but it is true - I battle with terror several times a day.
We are the ones that change - but I do believe. I believe that God ordains our days. That Kyle's life ... every breath... is a testimony of God's goodness. I believe that God will heal and restore our fierce little lion.
so back to my friend's husband - he said he will not rob God of the praise for His miracles! so this advice I will take! I will stand on the mountain top and shout "GOD IS HEALING MY SON".
Thank you Lord for protecting Kyle's brain, thank you Lord that you have caused the heart clot to go down in size, thank you Lord that you have given him a day of rest today for his lungs. Thank you that you are graciously answering our prayers.
enough for today we can end in thanks giving - and thanks for listening!
Hang on.. speaking of 19 days ... each morning when we meet with the doctors over rounds, our NP is presenting Kyle to the Attending doctor and they always start out the same. "Kyle Sherrill, day of life 19" or what ever day it is. This morning that statement really hit me - It has been 19 days since he was born! He is almost 3 weeks old! On one hand I couldn't believe he was already 19 days old. I couldn't believe that 3 weeks have flown by. on the other hand - I can't believe it has only been 19 days that we are only 3 weeks into this journey. Part of me wants to wonder how I will make it, how my husband will withstand, and how Jadon and Jack will endure for so many more. I am starting to feel what john talked about when he bloged about life going on for others. Our life goes on too - it is just so different. I guess in someways I feel left behind or incomplete. maybe under construction would be a better way to describe it. but God is so good b/c ... back to the advice comment from above...
I have received much advice - little that I have taken, and heard many stories, many of which I never needed to hear! - but to each I have this response inside that i usually keep to myself (working on being PC here) ANYWAY - but tonight I spoke to my friend and she was sharing about when her husband read the blog about kyle's brain scan. She said he was just about doing cartwheels around the house. He has some advice for me and for everyone really. BELIEVE! Pray and believe. He said that all he could do from where he was ... was pray and believe. and then he said this "Even if were the only one that begged God to save Kyle and believed he will - it would be enough." He said he wished he could look at john and I and tell us that every second. so that we could know.
it was then I realized that my fear really is a spiritual battle; a robbery of my belief. another friend shared with me the story of Elijah the other day and how he poured water on his offering and called on the Lord to set it on fire. God did. In the next passage or so this same man who has experienced the AWESOME POWER of GOD is running for his life - literaly - in fear.
and what she said was that God is the same - His is constant, powerful, faithful to his own character - We are the ones that waiver, we are the ones that are not constant. I have seen the Lord to miracles. I have seen Him heal. I have seen the AWESOME POWER of GOD. and so now how can I run in fear? How is it possible that I (ME - the one who has seen God display his power) could be tormented with fear. but it is true - I battle with terror several times a day.
We are the ones that change - but I do believe. I believe that God ordains our days. That Kyle's life ... every breath... is a testimony of God's goodness. I believe that God will heal and restore our fierce little lion.
so back to my friend's husband - he said he will not rob God of the praise for His miracles! so this advice I will take! I will stand on the mountain top and shout "GOD IS HEALING MY SON".
Thank you Lord for protecting Kyle's brain, thank you Lord that you have caused the heart clot to go down in size, thank you Lord that you have given him a day of rest today for his lungs. Thank you that you are graciously answering our prayers.
enough for today we can end in thanks giving - and thanks for listening!
Saturday am
SATURDAY, NOVEMBER 10, 2007 12:08 PM, CST
Pray today for Kyle's Lungs and Respiration.
Ask God for healing and development in this area.
Pray for the signs of progressive BPD to decrease.
Continue to pray for the clot in Kyle's heart to dissolve
and for the blood in Kyle's brain to dissolve and be reaborbed back into his body without blocking any spinal fluid movement. Pray God's protection and healing over Kyle's heart, lungs, and brain.
Thanks for praying!
Pray today for Kyle's Lungs and Respiration.
Ask God for healing and development in this area.
Pray for the signs of progressive BPD to decrease.
Continue to pray for the clot in Kyle's heart to dissolve
and for the blood in Kyle's brain to dissolve and be reaborbed back into his body without blocking any spinal fluid movement. Pray God's protection and healing over Kyle's heart, lungs, and brain.
Thanks for praying!
Friday, November 9, 2007
A grateful heart - Kelly
I have known the depths of love that a mother can feel. However, until these past few weeks I have not known the uncertainty, hurt and fear that can come with it. Tonight it was like I could breathe again, the joy of just being a mommy came flooding back. John prayed one night that joy would come in the morning (technically we waited until 6:30 pm the next day) BUT STILL - God was gracious and merciful and mighty. Thank you for praying with us.
Like John said, it feels a bit wierd to go from fear and begging the Lord to heal Kyle - to such thankfulness and amazement of what God is doing - then right back to focused praying and begging God to continue healing him. but that is where we are. I am so overjoyed at the news of Kyle's scan! Thank you for your prayers. Thank you so much for your prayers.
Please keep praying - john covered much of the details but Kyle is still going through some really hard things. His lungs, clot in his heart - please pray God's protection and healing over Kyle. Continue to pray for God's hand in protecting Kyle's brain from the blood that is still there, that it would organize and reabsorb without blocking any spinal fluid movement or blood flow that needs to happen.
we are grateful to God tonight and to you all for your constant encouragement and support.
Like John said, it feels a bit wierd to go from fear and begging the Lord to heal Kyle - to such thankfulness and amazement of what God is doing - then right back to focused praying and begging God to continue healing him. but that is where we are. I am so overjoyed at the news of Kyle's scan! Thank you for your prayers. Thank you so much for your prayers.
Please keep praying - john covered much of the details but Kyle is still going through some really hard things. His lungs, clot in his heart - please pray God's protection and healing over Kyle. Continue to pray for God's hand in protecting Kyle's brain from the blood that is still there, that it would organize and reabsorb without blocking any spinal fluid movement or blood flow that needs to happen.
we are grateful to God tonight and to you all for your constant encouragement and support.
Wiped out, but Thankful - John
SATURDAY, NOVEMBER 10, 2007 12:40 AM, CST
Ok,... so I KNOW I said I would outline what Dr Lopez said, but I am going to wait until we talk to Dr. Parik tomorrow
hopefully to really get an idea of what we are looking at.
kyle was resting pretty well when we left, and he is with one of his/our favorite nurses tonight...
so we know he is in good hands.
Please continue to pray for the things detailed in the journal from this afternoon.
We thank you so much for praying.
We are completely wiped out tonight, so I am going to cut it short. I PROMISE I will write tomorrow
when we get new perspective on Kyle's condition from Dr. Parik.
Pray for continued growth, health, and healing!!
Grace and Peace
John
Ok,... so I KNOW I said I would outline what Dr Lopez said, but I am going to wait until we talk to Dr. Parik tomorrow
hopefully to really get an idea of what we are looking at.
kyle was resting pretty well when we left, and he is with one of his/our favorite nurses tonight...
so we know he is in good hands.
Please continue to pray for the things detailed in the journal from this afternoon.
We thank you so much for praying.
We are completely wiped out tonight, so I am going to cut it short. I PROMISE I will write tomorrow
when we get new perspective on Kyle's condition from Dr. Parik.
Pray for continued growth, health, and healing!!
Grace and Peace
John
Friday,... the BIG report we were waiting on...
FRIDAY, NOVEMBER 09, 2007 07:17 PM, CST
Friday... Nov 9
I can honestly say, though there has been some nailbiting all day, I have been at peace. I know God is doing great things,... His mercies are new every morning...
So, Kyle had the big rescan of his head today. This morning, right about the time we walked in, the Sonogram guy walked in. We knew exactly what he was about to do, so we began to pray even more, one last time before he put that scanner to work.
Then, doctors came in for rounds. They told us among other things, that the report probably wouldn't be in until around 3 pm, which then jokingly turned into 4 pm, so then I added "5 pm..." I was closer. We began to wait, and wait and wait and wait
and wait some more. Finally, the report came in.
The blood was still there, however, has begun to organize to be reaborbed. In fact, the report even said, mildly resolved, which means that process has already begun! This is what we have been praying for!
They stayed at grade 3's on both sides, but there was reason and room for encouragement. There is one area that Dr Lopez will be talking about with one of her collegues who is specialized in the field of neurology, but even Dr. Lopez was encouraged and pleased with this news.
I had to take some alone time today to get alone and say thank You to God. (sadly, the only place to really do this is the bathroom. haha...)
God is good.
We begin praying now that there will be no long term damage from the bleeds, and that God will continue to work in allowing that blood to be reabsorbed very quickly.
Tonight, would you first and foremost take time
to Thank God for His goodness and His blessing
in this area.
Then, would you please pray that Kyle would not develope something called PVL from this area that Dr. Lopez is still concerned about.
Please keep praying for Kyle's lungs.
Pray for better respiration.
Pray that fluid will be drained off of Kyle quickly.
Pray Kyle rests and grows tonight and that
his feedings would continue to go well.
Pray that his clot would continue to evaporate and dissolve to nothing.
Pray that Kyle's PDA won't act up, and that God
will close it.
Kyle ins't "out of any woods" yet, but GOD IS WORKING!!!! We are tired, but so very encouraged
and so very thankful tonight.
Kyle is very irritable today. He won't tolerate any stimulation whatsoever, even taking his temp under his arm sets him off and he desaturates in his breathing very quickly... so pray that Kyle would rest well and that he would be more tolerable to the assessments they have to do, etc. We want to keep his vent settings low!
Thanks so much for your prayers and please know your encouragement means so much to Kelly and me both!
more later...
After I get home, I will try and write a new journal entry where I will try and outline all Dr Lopez said, and what she thinks all this could mean for Kyle's developement.
Friday... Nov 9
I can honestly say, though there has been some nailbiting all day, I have been at peace. I know God is doing great things,... His mercies are new every morning...
So, Kyle had the big rescan of his head today. This morning, right about the time we walked in, the Sonogram guy walked in. We knew exactly what he was about to do, so we began to pray even more, one last time before he put that scanner to work.
Then, doctors came in for rounds. They told us among other things, that the report probably wouldn't be in until around 3 pm, which then jokingly turned into 4 pm, so then I added "5 pm..." I was closer. We began to wait, and wait and wait and wait
and wait some more. Finally, the report came in.
The blood was still there, however, has begun to organize to be reaborbed. In fact, the report even said, mildly resolved, which means that process has already begun! This is what we have been praying for!
They stayed at grade 3's on both sides, but there was reason and room for encouragement. There is one area that Dr Lopez will be talking about with one of her collegues who is specialized in the field of neurology, but even Dr. Lopez was encouraged and pleased with this news.
I had to take some alone time today to get alone and say thank You to God. (sadly, the only place to really do this is the bathroom. haha...)
God is good.
We begin praying now that there will be no long term damage from the bleeds, and that God will continue to work in allowing that blood to be reabsorbed very quickly.
Tonight, would you first and foremost take time
to Thank God for His goodness and His blessing
in this area.
Then, would you please pray that Kyle would not develope something called PVL from this area that Dr. Lopez is still concerned about.
Please keep praying for Kyle's lungs.
Pray for better respiration.
Pray that fluid will be drained off of Kyle quickly.
Pray Kyle rests and grows tonight and that
his feedings would continue to go well.
Pray that his clot would continue to evaporate and dissolve to nothing.
Pray that Kyle's PDA won't act up, and that God
will close it.
Kyle ins't "out of any woods" yet, but GOD IS WORKING!!!! We are tired, but so very encouraged
and so very thankful tonight.
Kyle is very irritable today. He won't tolerate any stimulation whatsoever, even taking his temp under his arm sets him off and he desaturates in his breathing very quickly... so pray that Kyle would rest well and that he would be more tolerable to the assessments they have to do, etc. We want to keep his vent settings low!
Thanks so much for your prayers and please know your encouragement means so much to Kelly and me both!
more later...
After I get home, I will try and write a new journal entry where I will try and outline all Dr Lopez said, and what she thinks all this could mean for Kyle's developement.
Helping Hands - From Traci and Carol
So many of you have called and emailed us, asking for practical ways that you can help in all of this. We are so thankful for all of you who are wanting to help. Here are practical ways you can help:
Meals:
I (Traci Samford) am coordinating meals. My email address is traci.samford@gmail.com.
Meals are for Jadon and Jack and their evening caretaker, as well as for John and Kelly when they get home late in the evening. The boys will eat most anything, but it will be helpful if you think through what a 21 month old can feed himself. This will be a need for several months.
Groceries:
We have different folks who are picking up grocery needs for the house (food for the boys lunches, breakfast foods, household items, etc.). It would be helpful to have grocery cards to HEB or KROGER at the house, so whomever is going to pick up the groceries can just use one of those instead of using John and Kelly's debit card. The address at the house is 22 Heron Hollow Court, The Woodlands, TX 77382. Please write "Groceries" on the envelope.
Errands:
As in any household there are always errands to be run. Dry cleaning to be picked up, refrigerator filters to be picked up, etc. If you will email me (Carol) at cjones3730@gmail.com , I can get you plugged into helping out with this.
Prayer:
If you have not signed up for a time on the prayer calendar, please do this. (See Aunt LaNay's post @www.prayforkyle.com) This is really important, and not just a "cute idea."
Gas,Parking,Meals at the Hospital:
This is a very large expense for John and Kelly right now. They are spending hundreds of dollars a week on gas to and from the hospital, parking fees at the hospital and eating at the hospital. Gas cards and or Visa/MasterCard/AMEX gift cards are all helpful for these expenses and can be mailed to the house or given directly to John and Kelly at the hospital. And of course, if you are at the hospital with them at meal times, you could just pick up the tab. John will try to refuse, but beat him up if you have to. Just kidding. About the beating up part.
The Boys:
The boys are being well cared for, and don't really lack for anything other than wanting to spend time with their mom and dad. That being said, their little lives are fairly challenging right now and any little thing is a big thing. A couple of people have left little surprises on the porch for them (we don't know who, but WOW, what great days those were, so thank you!) Jadon is 5 and Jack is almost 2, so if this is something that you want to do, that's cool too.
Thank you again for your love and prayers for this family and your many offers of help,
Carol and Traci (The Nannies)
Meals:
I (Traci Samford) am coordinating meals. My email address is traci.samford@gmail.com.
Meals are for Jadon and Jack and their evening caretaker, as well as for John and Kelly when they get home late in the evening. The boys will eat most anything, but it will be helpful if you think through what a 21 month old can feed himself. This will be a need for several months.
Groceries:
We have different folks who are picking up grocery needs for the house (food for the boys lunches, breakfast foods, household items, etc.). It would be helpful to have grocery cards to HEB or KROGER at the house, so whomever is going to pick up the groceries can just use one of those instead of using John and Kelly's debit card. The address at the house is 22 Heron Hollow Court, The Woodlands, TX 77382. Please write "Groceries" on the envelope.
Errands:
As in any household there are always errands to be run. Dry cleaning to be picked up, refrigerator filters to be picked up, etc. If you will email me (Carol) at cjones3730@gmail.com , I can get you plugged into helping out with this.
Prayer:
If you have not signed up for a time on the prayer calendar, please do this. (See Aunt LaNay's post @www.prayforkyle.com) This is really important, and not just a "cute idea."
Gas,Parking,Meals at the Hospital:
This is a very large expense for John and Kelly right now. They are spending hundreds of dollars a week on gas to and from the hospital, parking fees at the hospital and eating at the hospital. Gas cards and or Visa/MasterCard/AMEX gift cards are all helpful for these expenses and can be mailed to the house or given directly to John and Kelly at the hospital. And of course, if you are at the hospital with them at meal times, you could just pick up the tab. John will try to refuse, but beat him up if you have to. Just kidding. About the beating up part.
The Boys:
The boys are being well cared for, and don't really lack for anything other than wanting to spend time with their mom and dad. That being said, their little lives are fairly challenging right now and any little thing is a big thing. A couple of people have left little surprises on the porch for them (we don't know who, but WOW, what great days those were, so thank you!) Jadon is 5 and Jack is almost 2, so if this is something that you want to do, that's cool too.
Thank you again for your love and prayers for this family and your many offers of help,
Carol and Traci (The Nannies)
Prayer for this a.m. - Carol (Nanny)
God, in the name of Jesus I am begging you on Kyle's behalf to let his little brain be okay. We have seen and heard what medicine says, and we are asking that depsite what we see and hear, that you will raise Kyle up, in confidence and assurance, that your right hand is upon him and that he has been chosen for your divine purpose in the land of the living. God heal him. Heal him. Good brain, good heart, good skin, good digestion, healed and whole God.
For his blood clot, if you can make a universe out of nothing, you can dissolve a blood clot. Would you dissolve it Lord? Would you make his blood satiny smooth, or whatever it is supposed to look like? You've done lots of miracles with blood Lord, will you do this one too?
For his brain, will you let it be unscarred, unharmed. Will you let there be a good report today God? Please. I don't know how else to ask.
And lastly, thank you for poop. For moments to celebrate. Some trust in chariots and horses, some trust in the things of the earth, like medicine and doctors and machines, but WE trust in the name of the Lord our God.
Amen.
For his blood clot, if you can make a universe out of nothing, you can dissolve a blood clot. Would you dissolve it Lord? Would you make his blood satiny smooth, or whatever it is supposed to look like? You've done lots of miracles with blood Lord, will you do this one too?
For his brain, will you let it be unscarred, unharmed. Will you let there be a good report today God? Please. I don't know how else to ask.
And lastly, thank you for poop. For moments to celebrate. Some trust in chariots and horses, some trust in the things of the earth, like medicine and doctors and machines, but WE trust in the name of the Lord our God.
Amen.
Please Pray this AM - Kelly
We are on our way to the hospital. We have Kyle's brain scan today. PLEASE PRAY FERVENTLY with us today that this scan will show no bleeding - that they previous bleeding has receeded. Pray for a perfectly healthy brain that God has healed. We are begging for complete healing in his little brain.
Thank you all for your prayers. God is Good and we believe him.
Kelly
Thank you all for your prayers. God is Good and we believe him.
Kelly
Thursday, November 8, 2007
THURSDAY, NOVEMBER 08, 2007 11:59 PM, CST
Oh Thursday… must see TV night (except when writers are on strike)
(somehow I manage to keep up with the news a little)
Our report card for the day:
KYLE POOPED!
(everyone should cheer here, somewhat feeling a little jr. high about it, but really,… this is a good thing.)
I am totally sure that one day, somewhere at the age of embarrass-ability, (get it, not accountability,… but,.. yeah, anyway,…)
I am sure one day he will be mortified that we posted about his first poopie diaper online for the masses to read about, but hey,… we are proud parents.
Somewhere late in the day, they (team) began to look at x rays of Kyle’s abdomen to see if they thought there may be something wrong with his intestinal track, etc…
They gave him a small dose of medicine to see if he would go #2 we call it in kiddieland,
And well,… boy, did he answer…
I have never seen Kelly so excited to change a diaper in my life.
So, we all breathed a sigh of relief on that one.
Other updates?
PDA- valve still open a little (confirmed through the echo cardiogram)
Cultures (blood) came back negative, which is great, because this signals to the team that there is no infection in Kyle right now! This is great news! This means we may be able to come off all antibiotics soon!
CLOT (the new development) ECHO #3 showed this to be minimally SMALLER!
THIS IS GREAT NEWS! They continue to give Kyle the fresh frozen plasma drip throughout the weekend, we believe.
They had also scanned Kyle’s abdomen to see if there were clots there,… CLEAR!
That is great news!
His CO2 is lower, but not low enough… keep praying for this to get lower!
His pH is up, which is better,…
We are still praying for his stats to level out, and for Kyle’s respiration to get better.
IVH (Head bleeds)… this is the big source of nerves right now.
We have a scan tomorrow to see if the bleeds got worse, are the same,
or got better. We are praying for better. We are praying for the blood to have been reabsorbed into Kyle’s body. We are praying for no scarring and no damage.
We ask God for total protection of Kyle’s brain and for healing!
All in all, it was a better day. We thank God for that. We needed that after such a scary day yesterday, and a potentially scary day tomorrow.
Keep the clot in your prayers. Pray for it to go away, and not be infectious.
The worry is that is could be an infection waiting to brew, so, we are praying that would not be the case, and that clot would dissolve.
Pray for tomorrow and the brain scan. Please pray God’s favor on this, and that this would be one area where we can see the power of God displayed for His glory.
Pray for Kelly and my nerves.
Pray for all to go well on our financial end. We have met with some people to see what insurance is going to do, and what else may be available. It looks like there could be some great help for us because of Kyle’s low birth weight and gestational age at birth.
Nothing is guaranteed until we get the word, … so pray that all that goes well!
Thank you again for praying and allowing me the freedom to vent sometime.
Thank you for praying for Kelly. Please continue to pray for her. She is having bad dreams of the day Kyle was born, and then some,… so pray that God protects her mind and gives her rest!
Pray for me. It seems like there are days where I am filled with peace, and then there are days where I can barely keep it together. It is so wierd... I actually thought to myself, 'this is what hormones feel like in women.'
hahaha.... ok, just kidding. but really,... it is strange to be
minding my own business, seemingly perfectly fine,... and all the sudden out of nowhere -- get teary,...
weepy almost,... (like a woman at a good shoe sale.)
Just kidding again... sorry.
Thank you all so much! We really do appreciate all your calls, messages, voicemails, etc… they are very encouraging to us. It is part of how we refill every night and prepare for the next day. You bless us greatly.
Oh Thursday… must see TV night (except when writers are on strike)
(somehow I manage to keep up with the news a little)
Our report card for the day:
KYLE POOPED!
(everyone should cheer here, somewhat feeling a little jr. high about it, but really,… this is a good thing.)
I am totally sure that one day, somewhere at the age of embarrass-ability, (get it, not accountability,… but,.. yeah, anyway,…)
I am sure one day he will be mortified that we posted about his first poopie diaper online for the masses to read about, but hey,… we are proud parents.
Somewhere late in the day, they (team) began to look at x rays of Kyle’s abdomen to see if they thought there may be something wrong with his intestinal track, etc…
They gave him a small dose of medicine to see if he would go #2 we call it in kiddieland,
And well,… boy, did he answer…
I have never seen Kelly so excited to change a diaper in my life.
So, we all breathed a sigh of relief on that one.
Other updates?
PDA- valve still open a little (confirmed through the echo cardiogram)
Cultures (blood) came back negative, which is great, because this signals to the team that there is no infection in Kyle right now! This is great news! This means we may be able to come off all antibiotics soon!
CLOT (the new development) ECHO #3 showed this to be minimally SMALLER!
THIS IS GREAT NEWS! They continue to give Kyle the fresh frozen plasma drip throughout the weekend, we believe.
They had also scanned Kyle’s abdomen to see if there were clots there,… CLEAR!
That is great news!
His CO2 is lower, but not low enough… keep praying for this to get lower!
His pH is up, which is better,…
We are still praying for his stats to level out, and for Kyle’s respiration to get better.
IVH (Head bleeds)… this is the big source of nerves right now.
We have a scan tomorrow to see if the bleeds got worse, are the same,
or got better. We are praying for better. We are praying for the blood to have been reabsorbed into Kyle’s body. We are praying for no scarring and no damage.
We ask God for total protection of Kyle’s brain and for healing!
All in all, it was a better day. We thank God for that. We needed that after such a scary day yesterday, and a potentially scary day tomorrow.
Keep the clot in your prayers. Pray for it to go away, and not be infectious.
The worry is that is could be an infection waiting to brew, so, we are praying that would not be the case, and that clot would dissolve.
Pray for tomorrow and the brain scan. Please pray God’s favor on this, and that this would be one area where we can see the power of God displayed for His glory.
Pray for Kelly and my nerves.
Pray for all to go well on our financial end. We have met with some people to see what insurance is going to do, and what else may be available. It looks like there could be some great help for us because of Kyle’s low birth weight and gestational age at birth.
Nothing is guaranteed until we get the word, … so pray that all that goes well!
Thank you again for praying and allowing me the freedom to vent sometime.
Thank you for praying for Kelly. Please continue to pray for her. She is having bad dreams of the day Kyle was born, and then some,… so pray that God protects her mind and gives her rest!
Pray for me. It seems like there are days where I am filled with peace, and then there are days where I can barely keep it together. It is so wierd... I actually thought to myself, 'this is what hormones feel like in women.'
hahaha.... ok, just kidding. but really,... it is strange to be
minding my own business, seemingly perfectly fine,... and all the sudden out of nowhere -- get teary,...
weepy almost,... (like a woman at a good shoe sale.)
Just kidding again... sorry.
Thank you all so much! We really do appreciate all your calls, messages, voicemails, etc… they are very encouraging to us. It is part of how we refill every night and prepare for the next day. You bless us greatly.
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