I just talked to Shelly and here is the latest...
The doctors said Sky is stable and decided to reduce his morphine dose! YEAH!!
Keller is also stable and is getting caffeine to prepare for switching over to the CPAP machine possibly as early as tomorrow. He's really responsive opening his eyes every time Shelly talks to him! YEAH!!
Micah and Shelly have power again! YEAH!!
So, it's sunny and blue skies and the news today is reflecting that! But as we mentioned before...this roller coaster of a ride is still not over, so the continued prayers are appreciated!
XOXO -
Auntie Kylah
"The Lord is good, A stronghold in the day of trouble; And He knows those who trust in Him" (Nahum 1:7).
Monday, January 23, 2012
Saturday, January 21, 2012
Roller Coaster are NOT my thing
Update from Shelly...
I've never liked roller coasters or any sort of carnival ride. I don't like the extreme highs where you know at any moment your stomach is going to be in your throat. I can't even scream on the way down like a normal person, I just make this sad (ok a little funny) noise that is the equivalent to a large man screaming like a little girl...both equally embarrassing. Here we are on the NICU rollercoaster, riding away with no carnie in sight to let us off this wild ride.
We started off the day climbing up the track, both the boys managed to be stable all night and were actually having a good morning. Micah and I were elated. Ahhh...it's going to be a good day. Hey maybe we will get cell service and if I really want to dream big....the power back on! So Micah didn't really care for the later, his inner cowboy was out and the sick man was actually enjoying the outage. He loved getting the generator all hooked up and the fun that came with roughing it. I DID NOT. I was starting to get angry about A. having to get Micah up a couple of times a night to start the generator so I could pump and then B. having to start up the BBQ so I could boil water to clean all the pump parts afterwards. I usually take these outages in stride knowing that it's part of living where we live but it was just another dip in this not so fun ride that I didn't want to be on. God could see that I was starting to crack so He sent a little message to our good friends the Spears. Mitch and Autumn had arranged for us to stay at the Fairmont in Seattle for the night. They along with our other good friends the Hawkins were staying there and would be willing to watch the boys while we visited the twins. Gray, Ash, and I all jumped at the chance to get out and stay at a hotel but I could see Micah was torn. I think knowing that I was on the brink of my own state of emergency made him leave his saddle behind and head west to the big city.
As Micah and I were walking hand-in-hand down University to Starbucks, we were both giddy having just left two happy boys at the hotel pool with our fabulous friends. It was a gorgeous day in Seattle and had we not been fueling up with caffeine to head into the NICU it would have been a really fun mini date.
As we walked into Skyler and Keller's room, Keller's nurse immediately left to get the neonatologist so he could update us...never a good sign...down we go. Stomachs firmly lodged in our throats we braced ourselves to see how low this dip was going to go....
Literally, seconds after talking to us on the phone this afternoon Sky's nurse did a feed suck (not quite a medical term but after each feeding they suction our the boys tummies to measure how much is being digested) and discovered blood in his tummy. Stomach bleeding is not considered normal so they quickly did a white blood cell & platelet count as well as an x-ray all of which came back with good results. This has been puzzling to the team and they are working hard to try to figure out why he's bleeding. They have decided to give him some antibiotics to see if it helps. The doctors do not like giving babies antibiotics because they want babies to use their own immunities and they don't want any bacteria or infections to come back stronger but at this point giving antibiotics is the best option. Back at the bottom of the ride listening to how sick our little boy is.
We did get a little high with Keller who not only had a good night but kept going through out the day. He is awaiting the blood for his transfusion which should be arriving any minute. He's going to be temporarily fasting during his transfusion but they are expecting for him to get right back on to his feeds with no problem. Kell loves his food and has been doing really great with all of this feedings. We are so blessed that he is doing well right now.
So as we continue on our ride as terrified as I am, I know that God has his hand on all of us and will guide us through. Thanks to everyone that is praying for our sweet boys here in the NICU and the ones at home with us.
Lots of Love,
Shelly
I've never liked roller coasters or any sort of carnival ride. I don't like the extreme highs where you know at any moment your stomach is going to be in your throat. I can't even scream on the way down like a normal person, I just make this sad (ok a little funny) noise that is the equivalent to a large man screaming like a little girl...both equally embarrassing. Here we are on the NICU rollercoaster, riding away with no carnie in sight to let us off this wild ride.
We started off the day climbing up the track, both the boys managed to be stable all night and were actually having a good morning. Micah and I were elated. Ahhh...it's going to be a good day. Hey maybe we will get cell service and if I really want to dream big....the power back on! So Micah didn't really care for the later, his inner cowboy was out and the sick man was actually enjoying the outage. He loved getting the generator all hooked up and the fun that came with roughing it. I DID NOT. I was starting to get angry about A. having to get Micah up a couple of times a night to start the generator so I could pump and then B. having to start up the BBQ so I could boil water to clean all the pump parts afterwards. I usually take these outages in stride knowing that it's part of living where we live but it was just another dip in this not so fun ride that I didn't want to be on. God could see that I was starting to crack so He sent a little message to our good friends the Spears. Mitch and Autumn had arranged for us to stay at the Fairmont in Seattle for the night. They along with our other good friends the Hawkins were staying there and would be willing to watch the boys while we visited the twins. Gray, Ash, and I all jumped at the chance to get out and stay at a hotel but I could see Micah was torn. I think knowing that I was on the brink of my own state of emergency made him leave his saddle behind and head west to the big city.
As Micah and I were walking hand-in-hand down University to Starbucks, we were both giddy having just left two happy boys at the hotel pool with our fabulous friends. It was a gorgeous day in Seattle and had we not been fueling up with caffeine to head into the NICU it would have been a really fun mini date.
As we walked into Skyler and Keller's room, Keller's nurse immediately left to get the neonatologist so he could update us...never a good sign...down we go. Stomachs firmly lodged in our throats we braced ourselves to see how low this dip was going to go....
Literally, seconds after talking to us on the phone this afternoon Sky's nurse did a feed suck (not quite a medical term but after each feeding they suction our the boys tummies to measure how much is being digested) and discovered blood in his tummy. Stomach bleeding is not considered normal so they quickly did a white blood cell & platelet count as well as an x-ray all of which came back with good results. This has been puzzling to the team and they are working hard to try to figure out why he's bleeding. They have decided to give him some antibiotics to see if it helps. The doctors do not like giving babies antibiotics because they want babies to use their own immunities and they don't want any bacteria or infections to come back stronger but at this point giving antibiotics is the best option. Back at the bottom of the ride listening to how sick our little boy is.
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| Sky |
We did get a little high with Keller who not only had a good night but kept going through out the day. He is awaiting the blood for his transfusion which should be arriving any minute. He's going to be temporarily fasting during his transfusion but they are expecting for him to get right back on to his feeds with no problem. Kell loves his food and has been doing really great with all of this feedings. We are so blessed that he is doing well right now.
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| Keller |
So as we continue on our ride as terrified as I am, I know that God has his hand on all of us and will guide us through. Thanks to everyone that is praying for our sweet boys here in the NICU and the ones at home with us.
Lots of Love,
Shelly
Thursday, January 19, 2012
Snowmagedon in our way...
I just talked to Shelly and this is what she told me:
Keller's PDA treatment went well and his murmer is a lot quieter, which is good! He is back on half his feeding and by tomorrow should be on full feedings. He opened his eyes for the first time today while Shelly was talking to him so that was special. They also took the top off of his bed so Shelly got to be really close to him, touch him, and give him kisses! Here is a video my mom took of their interaction with Keller! It's hard to hear, but Shelly is singing "I get so emotional" by Whitney Houston...then she did get emotional and the nurse handed her a tissue. Precious moment!
Sky is still heavily sedated, but has been stable today. They need to keep him still so he doesn't use too much energy moving around so the medicine can do it's work. Keep the prayers coming for him.
Micah and Shelly made it to the hospital today, but are heading home. They have no power, phone, or cell service. I have been instructed that if anything happens to Sky the hospital is going to call me. I'm trying to keep the updating coming as fast as I get them as I know everyone is on their toes.
Thanks again for all the prayers...they are needed and much appreciated!!!
Love to all,
-Auntie Kylah
Keller's PDA treatment went well and his murmer is a lot quieter, which is good! He is back on half his feeding and by tomorrow should be on full feedings. He opened his eyes for the first time today while Shelly was talking to him so that was special. They also took the top off of his bed so Shelly got to be really close to him, touch him, and give him kisses! Here is a video my mom took of their interaction with Keller! It's hard to hear, but Shelly is singing "I get so emotional" by Whitney Houston...then she did get emotional and the nurse handed her a tissue. Precious moment!
Sky is still heavily sedated, but has been stable today. They need to keep him still so he doesn't use too much energy moving around so the medicine can do it's work. Keep the prayers coming for him.
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| Mom & Dad looking in on Sky |
Micah and Shelly made it to the hospital today, but are heading home. They have no power, phone, or cell service. I have been instructed that if anything happens to Sky the hospital is going to call me. I'm trying to keep the updating coming as fast as I get them as I know everyone is on their toes.
Thanks again for all the prayers...they are needed and much appreciated!!!
Love to all,
-Auntie Kylah
Wednesday, January 18, 2012
Skyler in need
Auntie Kylah reporting here. I just got an update from Shelly. She's trying to handle this the best she can and asked that I post an update as soon as I could. So here we go.
Shelly talked to the Dr. today and Sky is still struggling. The Dr. said he's the sickest baby they've had in a long time. They are doing their best to keep him stable, but they are stopping his feedings for now as they are concerned about his ability to handle them due to all the drugs they are having to use to keep him stable. We're hoping he has an OK night.
Keller is taking the PDA treatment well and overall is still doing good.
My heart aches for these boys and Shelly as due to the snow she hasn't been able to be with them. I know God is watching and has things under control, but this is an emotional journey. Your continued prayers are amazing and I can't believe all the love and support we are getting! Thanks again and please keep it up.
Love,
Auntie Kylah
Shelly talked to the Dr. today and Sky is still struggling. The Dr. said he's the sickest baby they've had in a long time. They are doing their best to keep him stable, but they are stopping his feedings for now as they are concerned about his ability to handle them due to all the drugs they are having to use to keep him stable. We're hoping he has an OK night.
Keller is taking the PDA treatment well and overall is still doing good.
My heart aches for these boys and Shelly as due to the snow she hasn't been able to be with them. I know God is watching and has things under control, but this is an emotional journey. Your continued prayers are amazing and I can't believe all the love and support we are getting! Thanks again and please keep it up.
Love,
Auntie Kylah
More Prayers for our boys
Update from Shelly....
Yesterday the boys were 27 weeks gestationally...sorry no pictures....it wasn't a picture taking sort of day. The big boys had a snow day and they spent the day playing outside until they couldn't take the cold any longer, coming in to defrost, and then going out again.
Around 2:30 I got a call from the neonatologist saying that Skyler was really sick. They had him up on a high level of oxygen and it wasn't helping. His little lungs were working really hard and were now inflamed. So they were going to take him off of the ventilator that he was on and put him on the highest level ventilator that they have. He also wanted permission to give Sky steroids to help his lungs grow. He warned that there are possible brain development side effects, however, he felt like it was worth the chance because Sky wasn't going to be able to make it without the steroids. So of course, I said go ahead. Not a fun choice to have to make but a necessary one.
Keller was continuing to do well, but his PDA was getting really loud and since he was doing so well with his feedings the doctor thought it was time to take him off his feedings to prepare for the PDA treatment which will happen today.
After I got off the phone with the doctor I made a tearful call to Micah to have him come home and take me to see the boys. Mike (Micah's dad) met us on the way to take Ash & Gray back to our house so we could go alone and be there for Sky. When we arrived to Sky & Kell's room I broke down looking at little Sky as we waited for the neonatologist to come in and explain to us what was happening. Apparently, Sky had been very feisty, looking around, grabbing his tubes and wires, and not cooperating with the nurses or doctor at all. He was so focused on moving around that he wasn't able to pay attention to his breathing. They had to give him a paralytic to paralyze him so they could help him. As soon as they paralyzed him they were able to turn the oxygen way down and he stabilized. The doctor was actually really surprised at how well he did. He was expecting more drama throughout the evening. When we arrived Sky was still paralyzed and they were waiting for it to wear off. As soon as it wore off he began moving his arms, and kicking his legs. He had his eye open just a little slit and while he looked at me we had a little chat about being a good boy and letting the nurses and doctors do their job. They gave him a sedative to keep him calm and make him a little sleepy. As soon as he was relaxed again, Micah and I both feel asleep. I think we both were worn out from all the drama. Thankfully, the nurse on duty last night is very familiar with our boys and will take excellent care of Sky. Pray, pray, pray that it was a good night for both of them.
~Shelly
Monday, January 16, 2012
A busy weekend!
The weekend update from Shelly!
The Big Boys: Micah and his dad took the boys up to the mountains on Friday for their lessons. Both of the boys had a great time and were exhausted when they got home. Asher informed me that if you don't listen at ski lessons the teachers make you clean toilets and he does NOT want to do that. He's seen me clean toilets and it doesn't look like fun. Sounds like his teachers are having a little fun messing with the kids. With the boys on the mountain a few of my girlfriends came over for a girl's night. It was really nice to chat it up with some good friends. On Saturday night, Micah, Asher, & Gray went to Monster Jams (for those that aren't familiar with Monster Jams it's the monster truck show and I'm sure the people watching was AMAZING). Asher had the time of his life! He's already such a little gear head and Micah couldn't be prouder. While the boys were geeking out over the huge air the Grave Digger was getting off the jumps, a really good friend came over to hang out with me so it was another fabulous evening for me as well. On Sunday, the boys played out in the snow (Gray stayed out even after it had gotten dark.) as soon as we got home from visiting the twins. They are loving the snow and want more. I'm hoping that we're not going to get too much more. It makes it more of a challenge to get in to see the twins and I would hate to go a day without seeing them.
And now for the baby update...
Both of the boys seem to dislike the nights. They seem to be at their worst over the night and do much better during the day. Hopefully, they'll turn that around and have good days and nights.
Skyler: had his PDA treatment and while the Dr. didn't think it was really working at first we got news yesterday that the treatment actually worked really well and the opening is smaller. They will monitor it to see if it will continue closing or if he will need another treatment. Overall, Sky is having a harder time right now. He isn't wanting to be touched or moved and is on small doses of morphine to try to keep him calm and comfortable. It's hard to see him so agitated. On Sunday during our visit I was talking to him and he opened his eye. (He was on his side so I couldn't see his other eye to see if both opened or not.) It was SO awesome!!! I got really excited and continued to talk to him and he looked at me again. The nurses said it was the first time he opened his eye and I feel so honored that he chose me for that special moment. Poor Micah was out of the room with the big boys and missed the whole thing.
Keller: is our big eater! He's now up to 16 cc every 3 hours. This is quite a jump and we couldn't be more thrilled! He's feeling a lot better and is moving around a lot more. He's giving the nurses a run for their money by pulling on wires and tubes. They are so happy that he is feeling better they don't mind the constant bells and buzzers. Kell is really working his eye brows and seems to want to open his eyes. I can't wait to see his little eyes, too! On Saturday, I got to change Keller's diaper for the first time. He was very cooperative and again I was thrilled to have to chance to do it. Remind me of that when I'm up to my ears in diaper changes when both boys are home.They are talking about removing his PICC line because he is doing so well right now and so it is not being used. Apparently, it is better to take it out and have to replace it later than leave it in. Leaving it in increases the chances for infection.
Please continue to pray for our little guys...we still have many weeks ahead of us.
Lots of Love,
Shelly
The Big Boys: Micah and his dad took the boys up to the mountains on Friday for their lessons. Both of the boys had a great time and were exhausted when they got home. Asher informed me that if you don't listen at ski lessons the teachers make you clean toilets and he does NOT want to do that. He's seen me clean toilets and it doesn't look like fun. Sounds like his teachers are having a little fun messing with the kids. With the boys on the mountain a few of my girlfriends came over for a girl's night. It was really nice to chat it up with some good friends. On Saturday night, Micah, Asher, & Gray went to Monster Jams (for those that aren't familiar with Monster Jams it's the monster truck show and I'm sure the people watching was AMAZING). Asher had the time of his life! He's already such a little gear head and Micah couldn't be prouder. While the boys were geeking out over the huge air the Grave Digger was getting off the jumps, a really good friend came over to hang out with me so it was another fabulous evening for me as well. On Sunday, the boys played out in the snow (Gray stayed out even after it had gotten dark.) as soon as we got home from visiting the twins. They are loving the snow and want more. I'm hoping that we're not going to get too much more. It makes it more of a challenge to get in to see the twins and I would hate to go a day without seeing them.
And now for the baby update...
Both of the boys seem to dislike the nights. They seem to be at their worst over the night and do much better during the day. Hopefully, they'll turn that around and have good days and nights.
Skyler: had his PDA treatment and while the Dr. didn't think it was really working at first we got news yesterday that the treatment actually worked really well and the opening is smaller. They will monitor it to see if it will continue closing or if he will need another treatment. Overall, Sky is having a harder time right now. He isn't wanting to be touched or moved and is on small doses of morphine to try to keep him calm and comfortable. It's hard to see him so agitated. On Sunday during our visit I was talking to him and he opened his eye. (He was on his side so I couldn't see his other eye to see if both opened or not.) It was SO awesome!!! I got really excited and continued to talk to him and he looked at me again. The nurses said it was the first time he opened his eye and I feel so honored that he chose me for that special moment. Poor Micah was out of the room with the big boys and missed the whole thing.
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| Sky |
Keller: is our big eater! He's now up to 16 cc every 3 hours. This is quite a jump and we couldn't be more thrilled! He's feeling a lot better and is moving around a lot more. He's giving the nurses a run for their money by pulling on wires and tubes. They are so happy that he is feeling better they don't mind the constant bells and buzzers. Kell is really working his eye brows and seems to want to open his eyes. I can't wait to see his little eyes, too! On Saturday, I got to change Keller's diaper for the first time. He was very cooperative and again I was thrilled to have to chance to do it. Remind me of that when I'm up to my ears in diaper changes when both boys are home.They are talking about removing his PICC line because he is doing so well right now and so it is not being used. Apparently, it is better to take it out and have to replace it later than leave it in. Leaving it in increases the chances for infection.
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Please continue to pray for our little guys...we still have many weeks ahead of us.
Lots of Love,
Shelly
Friday, January 13, 2012
Starbucks for babies?
Another update from Shelly!
We had our first "team meeting" yesterday morning with everyone who works with Skyler and Keller. These meetings give us a chance to hear what everyone has to say about the twins progress and thankfully we will have a team meeting every Thursday. We feel so blessed that we get to sit down with everyone weekly and have our questions answered. So here is the break down from yesterday:
Sky: had a blood transfusion. He has only 2 oz. of blood in his entire body so every time they do a blood draw on him it's a big deal. The doctor said it's neither good or bad it's just part of being so little and Keller will probably need one too at some point. They decided to start treating his PDA as well. Apparently, he's ready to handle the treatment side effects. They have stopped his feedings for yesterday and today for his transfusion and PDA treatment so I'm preparing his favorite dishes for Saturday!
He'll have another head ultra sound next week. The doctor said the worst of the bleeding in the brain happens the first few days of life and Skyler's bleeding was low grade and they do not expect anymore to occur. So what they're watching for is how Sky's body handles the blood. And so far it looks good. Oh and I've now gone pro with changing Sky's poopy diapers. It's still thrilling and I can't wait for the days at home when I'm tired of changing all of the poo diapers these boys are destine to produce.
Keller: the doctor said that Mr. Keller is being a little lazy on the breathing and he wants to push him a bit more. They are planning on taking him off the vent next week and giving him a little caffeine to help him with his breathing. Just like his mama a little Starbucks is very motivating. Kell's PDA is a little louder but they are just keeping an eye on it while they focus on Sky's first.
So while all of this sounds a little bit crazy and overwhelming it is still all considered expected for babies so early.
The big boys are feeling so much better now that Micah and I are home every night. Asher promptly asks me for my daily NICU sticker each evening. He loves that they have a different colored dot on them each day. (Yesterday was red just incase you were wondering.) Both of the boys had their first snowboarding/ ski lesson last Friday and loved it. Gray is getting so good. It's amazing how far he has come from his first lesson last year. Ash did really well, too. Micah said he looked so cute out there in all of his gear. Although, Micah and his dad had to hide from him to keep him from ignoring his teachers while he ate snowballs. Once Daddy & Papa were out of sight he followed along with the class like he was supposed to. They are all looking forward to their guy time up on the mountain tonight.
Thanks for praying for all of our adorable, sweet, and amazing boys!
Lots of Love,
Shelly
We had our first "team meeting" yesterday morning with everyone who works with Skyler and Keller. These meetings give us a chance to hear what everyone has to say about the twins progress and thankfully we will have a team meeting every Thursday. We feel so blessed that we get to sit down with everyone weekly and have our questions answered. So here is the break down from yesterday:
Sky: had a blood transfusion. He has only 2 oz. of blood in his entire body so every time they do a blood draw on him it's a big deal. The doctor said it's neither good or bad it's just part of being so little and Keller will probably need one too at some point. They decided to start treating his PDA as well. Apparently, he's ready to handle the treatment side effects. They have stopped his feedings for yesterday and today for his transfusion and PDA treatment so I'm preparing his favorite dishes for Saturday!
He'll have another head ultra sound next week. The doctor said the worst of the bleeding in the brain happens the first few days of life and Skyler's bleeding was low grade and they do not expect anymore to occur. So what they're watching for is how Sky's body handles the blood. And so far it looks good. Oh and I've now gone pro with changing Sky's poopy diapers. It's still thrilling and I can't wait for the days at home when I'm tired of changing all of the poo diapers these boys are destine to produce.
Keller: the doctor said that Mr. Keller is being a little lazy on the breathing and he wants to push him a bit more. They are planning on taking him off the vent next week and giving him a little caffeine to help him with his breathing. Just like his mama a little Starbucks is very motivating. Kell's PDA is a little louder but they are just keeping an eye on it while they focus on Sky's first.
So while all of this sounds a little bit crazy and overwhelming it is still all considered expected for babies so early.
The big boys are feeling so much better now that Micah and I are home every night. Asher promptly asks me for my daily NICU sticker each evening. He loves that they have a different colored dot on them each day. (Yesterday was red just incase you were wondering.) Both of the boys had their first snowboarding/ ski lesson last Friday and loved it. Gray is getting so good. It's amazing how far he has come from his first lesson last year. Ash did really well, too. Micah said he looked so cute out there in all of his gear. Although, Micah and his dad had to hide from him to keep him from ignoring his teachers while he ate snowballs. Once Daddy & Papa were out of sight he followed along with the class like he was supposed to. They are all looking forward to their guy time up on the mountain tonight.
Thanks for praying for all of our adorable, sweet, and amazing boys!
Lots of Love,
Shelly
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