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Monday, December 17, 2012
Monday, December 3, 2012
Service Information
Ryder's service will be Thursday, December 6, 2012.
First Lutheran Church
6400 State Line Rd.
Mission Hills, KS
12:00 Visitation
1:00 Service
Reception Following
In lieu of flowers, donations can be made in Ryder's name to Little Hearts: https://www.littlehearts.org/Content/Donations.asp
Sunday, December 2, 2012
The Yellow Butterfly
Back when Ryder was still in room 9 (in real world time that was last Spring) there was a particular misty day that I haven't thought about for a while, but I imagine now I will come back to frequently for a long time. Ryder was still on the ventilator from his Norwood surgery; he was still on a lot of drips, he was tiny. Very fragile. But he was stable that day. We had our room set up with the recliner in the back corner next to the ICU toilet which we used as a table, then on the other side of the toilet was another chair. We would alternate seats. We didn't have much in the room yet, just a basket of snacks from the hospitalists, a hospital blanket (for the person sleeping in the recliner) and our computers. This was back when I was still opposed to having much in the room, because that was a sign you were staying put and I was determined Ryder was leaving that ICU any minute and I didn't want to have to pack up a ridiculous amount of baby stuff. His room was waiting with his stuff at home.
To get from room 9 to the waiting room you had to walk around the main nursing station down the hall and then turn right to go through the double doors. That day a little girl was dying in a room on the left just before you turned the corner for the door. She was maybe 4 or so, and I don't know why she was sick, but I knew she was dying because a butterfly was pinned on her door. A yellow one. I've seen blue ones and green and red I think, and she got a yellow one.
Anyone who's been in the ICU for a few weeks knows what the butterfly means and it gives you the same flurry of thoughts every time - What happened? Why this baby? How is the family doing in there? I hope that child isn't hurting anymore. And you hold your breath when you walk by. And your heart breaks a little. Sometimes you don't realize it but you are crying when you pass the room. And you are so thankful that it isn't your room. And then you feel bad for thinking that.
I don't know why I had my good camera there that day. I didn't even taken any pictures of Ryder. And I don't know why I was looking out the window onto the courtyard from the waiting room...it was before they even started working on the garden that months later Ryder took his first breath outside in. But I did. And I saw it fluttering around, a big beautiful yellow butterfly.
I think my heart stopped. I know I forgot to breathe. I watched it for a few minutes, flittering and floating, sometimes coming close to the window so I could see it, sometimes flying up high between the windows so I thought it had left. I looked around a few times to see if anyone else was in the waiting room and had seen this sight. No. Watching TV. Then I was alone again. I went back to Ryder's room and got my camera. I waited. After a few minutes the butterfly dipped back down so I could see it again. And then I spent the next 20 or 30 minutes trying to take a picture of it...I was there at that window so long I can't imagine how many people walked by thinking I was insane, darting around trying to take a picture of something that I am certain only I could see. It actually made me smile, that butterfly - darting around so quickly trying to avoid getting captured. As soon as I would put my camera down and look again it would be there, right up against the glass and then dart away again just as I tried to focus on it. Despite all that effort, I only ended up with three very poor pictures of that butterfly.
Please trust me, it isn't dust or a moth you can see that speck of - it is a big beautiful yellow butterfly. I spent the next several hours staring down the hall at the butterfly pinned on the door. I can't tell you how much I longed to knock, to tell that family their butterfly was just outside the window, she was fluttering around and so beautiful. How could I tell them? Could I ask the nurse to tell them? It wasn't any of my business. Or was it? What if I was the one that was supposed to tell them? Should I show them my pictures? I just couldn't do it. I regretted that for a long time...and that night the room was empty and the yellow butterfly was gone.
On Friday afternoon, there was a yellow butterfly on Ryder's door. He should have gotten a blue one I think but it was yellow instead. I don't know what happened, it seemed fast, it's a blur. I remember lots of people, masks, machines, beeping. I keep seeing the rhythm on the monitor. I closed my eyes and I was holding him again, swaddled in a blanket. He was just as perfect as the day he was born. He has been perfect all along.
I realized yesterday that I didn't need to tell anyone about the yellow butterfly - she was there for me. She came to tell me to keep drinking in every moment. To make every moment special. To stay thankful and full of hope. To try to keep smiling because although my Ryder would always be a warrior, he was fragile and he would be looking to us for strength and protection. He lived his life in a glass world created just for him and it would only be through us, his parents, his sister, his family and friends, his nurses, his respiratory, physical and occupational therapists, and his doctors that would see happiness. And I think he saw that every day. There is a lot more to say but not now. I just wanted to tell you that when you look at that butterfly up close, she is more than a butterfly, she is an angel. And now, so is our Ryder.
To get from room 9 to the waiting room you had to walk around the main nursing station down the hall and then turn right to go through the double doors. That day a little girl was dying in a room on the left just before you turned the corner for the door. She was maybe 4 or so, and I don't know why she was sick, but I knew she was dying because a butterfly was pinned on her door. A yellow one. I've seen blue ones and green and red I think, and she got a yellow one.
Anyone who's been in the ICU for a few weeks knows what the butterfly means and it gives you the same flurry of thoughts every time - What happened? Why this baby? How is the family doing in there? I hope that child isn't hurting anymore. And you hold your breath when you walk by. And your heart breaks a little. Sometimes you don't realize it but you are crying when you pass the room. And you are so thankful that it isn't your room. And then you feel bad for thinking that.
I don't know why I had my good camera there that day. I didn't even taken any pictures of Ryder. And I don't know why I was looking out the window onto the courtyard from the waiting room...it was before they even started working on the garden that months later Ryder took his first breath outside in. But I did. And I saw it fluttering around, a big beautiful yellow butterfly.
I think my heart stopped. I know I forgot to breathe. I watched it for a few minutes, flittering and floating, sometimes coming close to the window so I could see it, sometimes flying up high between the windows so I thought it had left. I looked around a few times to see if anyone else was in the waiting room and had seen this sight. No. Watching TV. Then I was alone again. I went back to Ryder's room and got my camera. I waited. After a few minutes the butterfly dipped back down so I could see it again. And then I spent the next 20 or 30 minutes trying to take a picture of it...I was there at that window so long I can't imagine how many people walked by thinking I was insane, darting around trying to take a picture of something that I am certain only I could see. It actually made me smile, that butterfly - darting around so quickly trying to avoid getting captured. As soon as I would put my camera down and look again it would be there, right up against the glass and then dart away again just as I tried to focus on it. Despite all that effort, I only ended up with three very poor pictures of that butterfly.
On Friday afternoon, there was a yellow butterfly on Ryder's door. He should have gotten a blue one I think but it was yellow instead. I don't know what happened, it seemed fast, it's a blur. I remember lots of people, masks, machines, beeping. I keep seeing the rhythm on the monitor. I closed my eyes and I was holding him again, swaddled in a blanket. He was just as perfect as the day he was born. He has been perfect all along.
I realized yesterday that I didn't need to tell anyone about the yellow butterfly - she was there for me. She came to tell me to keep drinking in every moment. To make every moment special. To stay thankful and full of hope. To try to keep smiling because although my Ryder would always be a warrior, he was fragile and he would be looking to us for strength and protection. He lived his life in a glass world created just for him and it would only be through us, his parents, his sister, his family and friends, his nurses, his respiratory, physical and occupational therapists, and his doctors that would see happiness. And I think he saw that every day. There is a lot more to say but not now. I just wanted to tell you that when you look at that butterfly up close, she is more than a butterfly, she is an angel. And now, so is our Ryder.
Saturday, November 17, 2012
One year. Wow.
A year ago today we woke up in Boston. I checked in at "The Brigham" and was admitted to the OB floor where I had a spinal and went to the OR...
There, Baby Ryder floated around blissfully until he had fentanyl and a paralytic medicine injected into his very small in utero bottom via an amniocentesis needle. Then for several hours a team including Dr. Tworetzky, 2 other cardiologists, an OB, an obstetric radiologist, 2 anesthesiologists and a pediatric anesthesiologist as well as a nursing team worked on Ryder's heart. They went in via an amniocentesis-like procedure entering his chest wall and then his heart...on attempt 1 a small hole was made in the atrial septum but the stent couldn't be deployed...on attempt two the stent was deployed but flipped out into the right atrium where it bounced around and lodged in Ryder's tricuspid valve. Then with some quick thinking before it tore up his valve it was literally poked into the right ventricle with a cardiac cath wire. There it hung out. Then a debate ensued about whether to abort the procedure as Ryder's hemopericardium (blood around the heart) was drained out and his heart rate slowed dangerously low.... The very loud and [thankfully] confident interventialist went for round 3 as he said "Come on! Let's give this baby a chance!" There was probably a few choice words thrown around but I was laying very still (mostly because I was paralyzed) and quietly breathing, waiting to hear for Ryder's heart rate to pick up...and it did...and they poked another big hole in his atrial wall...and he lived.
I wrote on this blog November 17, 2011 "As with many things in life the procedure didn't go exactly as planned." Ha! I had no idea the ride Ryder would take us on for the next year...
Well our little miracle is getting his much needed ventilator rest this weekend...hoping to start cutting back on the support next week so we can see our smiling little guy again soon. As always, we appreciate all the prayers for our warrior. Remember...home. for. Christmas.
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| Photo courtesy of Wayne Tworetzky, MD, director, Fetal Imaging and associate in Cardiology, Boston Children's Hospital (professionally texted to Ross via iphone, of course) |
There, Baby Ryder floated around blissfully until he had fentanyl and a paralytic medicine injected into his very small in utero bottom via an amniocentesis needle. Then for several hours a team including Dr. Tworetzky, 2 other cardiologists, an OB, an obstetric radiologist, 2 anesthesiologists and a pediatric anesthesiologist as well as a nursing team worked on Ryder's heart. They went in via an amniocentesis-like procedure entering his chest wall and then his heart...on attempt 1 a small hole was made in the atrial septum but the stent couldn't be deployed...on attempt two the stent was deployed but flipped out into the right atrium where it bounced around and lodged in Ryder's tricuspid valve. Then with some quick thinking before it tore up his valve it was literally poked into the right ventricle with a cardiac cath wire. There it hung out. Then a debate ensued about whether to abort the procedure as Ryder's hemopericardium (blood around the heart) was drained out and his heart rate slowed dangerously low.... The very loud and [thankfully] confident interventialist went for round 3 as he said "Come on! Let's give this baby a chance!" There was probably a few choice words thrown around but I was laying very still (mostly because I was paralyzed) and quietly breathing, waiting to hear for Ryder's heart rate to pick up...and it did...and they poked another big hole in his atrial wall...and he lived.
I wrote on this blog November 17, 2011 "As with many things in life the procedure didn't go exactly as planned." Ha! I had no idea the ride Ryder would take us on for the next year...
Well our little miracle is getting his much needed ventilator rest this weekend...hoping to start cutting back on the support next week so we can see our smiling little guy again soon. As always, we appreciate all the prayers for our warrior. Remember...home. for. Christmas.
Thursday, November 15, 2012
Sphygmomanometers
Just thought I'd throw a medical word out there for kicks...not as fun to say as epistaxis (nose bleed) but still, why not say blood pressure machine if you are referring to a blood pressure machine. But I digress...
Ryder is stable today. That doesn't sound exciting I know, but it is a very good thing. Last night was not as rough as the night before, but I fell asleep and woke up to the lights on - never good. Not as bad as when you wake up and realize you missed some text messages, the last of which ends "Aren't you getting my texts?" but still...my reflex is to look first at the monitor and not Ryder...blood pressure 40s/20s. That is looowww. He got 2 boluses of albumin and they popped back up; then an hour later same thing. But, after that he sailed through the rest of his night without any big issues. He needed a little more oxygen this am but this was transient and now he is barely on any; just still needing the actual breathing work done by the ventilator. His blood cultures are still negative so it appears that the continued fevers are likely all viral so hopefully all things will continue to improve with time. He even woke up a little today, though still pretty sedated. But those pesky blood pressures...he has a normal one now but is on dopamine and a small amount of epinephrine (both keep blood pressure higher). I think a lot of it is because of his sedation but still, the tower of green lights on his IV pump pole is always scary.
What I keep looking at, though, is this blue balloon...
the child life department brought it in tied to a rattle for Ryder last Thursday when they heard he was transferring to the floor. It's mostly deflated now, tied to the back of his crib. I am thankful it doesn't say anything like good luck or congratulations...but there it is, still afloat, twirling around above the NIRS monitor. It was tied to the front of his crib until they moved it to intubate him again -I remember it was the first thing I saw walking into his room Tuesday afternoon. I so wanted to pop it and thow it away...stupid reminder that this wasn't how it was supposed to go this time. Stupid out-of-place balloon, floating around all day in complete denial that it no longer had anything to celebrate. But I didn't. That balloon is Ryder's, and every time he takes another breath there is reason to celebrate. That balloon isn't perfect, but I'm sure he doesn't care...nothing in this world is perfect. Although our little warrior IS perfectly amazing. He will come home, I know it. Home for Christmas. So..sphygmomanometer, keep those good blood pressures a comin!
Ryder is stable today. That doesn't sound exciting I know, but it is a very good thing. Last night was not as rough as the night before, but I fell asleep and woke up to the lights on - never good. Not as bad as when you wake up and realize you missed some text messages, the last of which ends "Aren't you getting my texts?" but still...my reflex is to look first at the monitor and not Ryder...blood pressure 40s/20s. That is looowww. He got 2 boluses of albumin and they popped back up; then an hour later same thing. But, after that he sailed through the rest of his night without any big issues. He needed a little more oxygen this am but this was transient and now he is barely on any; just still needing the actual breathing work done by the ventilator. His blood cultures are still negative so it appears that the continued fevers are likely all viral so hopefully all things will continue to improve with time. He even woke up a little today, though still pretty sedated. But those pesky blood pressures...he has a normal one now but is on dopamine and a small amount of epinephrine (both keep blood pressure higher). I think a lot of it is because of his sedation but still, the tower of green lights on his IV pump pole is always scary.
What I keep looking at, though, is this blue balloon...
the child life department brought it in tied to a rattle for Ryder last Thursday when they heard he was transferring to the floor. It's mostly deflated now, tied to the back of his crib. I am thankful it doesn't say anything like good luck or congratulations...but there it is, still afloat, twirling around above the NIRS monitor. It was tied to the front of his crib until they moved it to intubate him again -I remember it was the first thing I saw walking into his room Tuesday afternoon. I so wanted to pop it and thow it away...stupid reminder that this wasn't how it was supposed to go this time. Stupid out-of-place balloon, floating around all day in complete denial that it no longer had anything to celebrate. But I didn't. That balloon is Ryder's, and every time he takes another breath there is reason to celebrate. That balloon isn't perfect, but I'm sure he doesn't care...nothing in this world is perfect. Although our little warrior IS perfectly amazing. He will come home, I know it. Home for Christmas. So..sphygmomanometer, keep those good blood pressures a comin!
Tuesday, November 13, 2012
The Common Cold
We were all set for Ryder to move up to the 4th floor on Thursday. How exciting, and terrifying!!
Just waiting to get a bed...then the oxygen sats were lower...and then lower...and back on the nasal canula. It was such a bummer. It had been 2 + weeks without oxygen. So Ryder stayed in the ICU that night, he had a low grade temp, and then the coughing started. He had an ok day Friday but was a little more cranky Saturday. We thought it was from his vaccinations which he had just gotten. He did get to eat some sweet potatoes and green beans (and then tried to eat anything else he could get anywhere near his mouth) which was fun -he has clearly been working on those fine motor skills and can do his own oral care with a mouth swab. In fact, I have no doubts he could brush his own teeth already if he had any. Grandma GG gave him some bananas which he loved on Saturday night but his cough got worse and he had to get put back on a lot more oxygen. The last 2 nights he has been miserable, waking up every hr coughing, feeling yucky, congested and getting puffy. His viral PCR came back positive for rhinovirus and enterovirus. And today our little warrior was intubated for...a cold.
Despite our scrupulous hand-washing and the every-other-night alcohol-wiping down of his room he couldn't avoid the worst infection risk...US. It can always be worse I know, he could have something irreversible, could have had respiratory failure after he was transferred out of the ICU or at home, but nothing breaks your heart like watching your sweet little angel suffer and get tubed after you couldn't stop loving on him and gave him a cold. Because I live in a state of perpetual denial I just came to terms about an hour ago that he wasn't coming home for Thanksgiving. I really believed it was going to happen this time. But there is still 42 days until Christmas...so if you have the time for a prayer tonight and/or a letter to Santa, all we want for Christmas is our baby boy under the Christmas tree. Wouldn't that just be perfect? It wouldn't be the first miracle for sure. And to my Ryder, I am so sorry peanut. I am sorry beyond words.
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| Seriously, how handsome is this little butterball?!? |
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| Ryder, fighting the mean viruses |
Wednesday, November 7, 2012
Lellow
What an amazing week it has been so far...and our little warrior may just be moving to the floor tomorrow! Ryder had a good visit w/grandma and grandpa this weekend and I took Christmas pictures of he and Addy on Sunday - not going to lie, can't stop looking at them. He is wearing a little Santa hat and looks like a chubby elf. I could just eat him up.
The other fun part of our week was Addy's very first parent-teacher conference for preschool. She is such a big girl! Of course Addy has been "a delight" in school - she is so funny I don't know how it would be possible to not be entertained by her. She spends most of her day with "practical life" montessori activities - i.e. washing windows, polishing metals, sorting things. No surprise there. She is apparently very "busy". Maybe that is why she can't sleep at night...still thinking of all she has to do. She writes "lists" at home, an activity she of course picked up from me (and with help from the Frog and Toad story - if you haven't read it it's a good one - Toad starts his list after waking up with "wake up" just so he can cross it out). The lists are great, since she obviously can't write, but she makes perfect little squiggles on each line of a notepad. I can't even keep track of all the funny thinks she says. The other day she was talking about Ross -she still is processing the fact that he works at Children's and Ryder lives here but one has nothing to do with the other. She said I am going to see daddy in Ryder's room, but he won't be at work there because he doesn't do work. Funny.
It is so easy to look at our Ryder and see how far he has come; to see how much he has overcome, developed and grown. If you don't believe in miracles, then you probably haven't see any of my photos. Though no photo could compare to remembering how he looked after his first surgery or worse, how he looked when he had to be pulled of ECMO post-op day 3. Frail, blue, cold, battered. On full life support, surrounded by IV poles with so many pumps we lost count. So sad I couldn't even take his picture yet. Compare that to now. He is so perfect.
What I sometimes lose sight of is how much Addy has grown since Ryder has been here. Almost 9 months for a 2 (now three) year-old is an eternity. In the last 8 1/2 months she became a big sister. She moved daycare rooms and then stayed at home with our nanny (who we were hoping would be at home with Ryder), and she is now in preschool. She started dance class. She LISTENS in dance class. She has a new BFF neighbor who she actually will shrare toys with. She has learned all her letters, can [sort of] write her name and is doing great with numbers. She stopped wearing pullups for naps. She is awesome. We are so lucky to have her - can you believe a toddler who has been carted back and forth to a hosptial a million times, missed time with mommy and/or daddy, is forced to try and figure out why other kids have baby brothers or sisters at home and hers is still at the hospital and she never complains. She only cries about it when she can't come visit him. She is such a good big sister. She is getting soooo big. Sometimes, I forget that. And then the other day she said yellow. Not lellow. I asked her again what color her sun was - "yellow". Seriously?!? My baby girl can make a "Y" sound? What are we going to do. Wait until she says Ryder instead of Wyder. I will be a mess.
The other fun part of our week was Addy's very first parent-teacher conference for preschool. She is such a big girl! Of course Addy has been "a delight" in school - she is so funny I don't know how it would be possible to not be entertained by her. She spends most of her day with "practical life" montessori activities - i.e. washing windows, polishing metals, sorting things. No surprise there. She is apparently very "busy". Maybe that is why she can't sleep at night...still thinking of all she has to do. She writes "lists" at home, an activity she of course picked up from me (and with help from the Frog and Toad story - if you haven't read it it's a good one - Toad starts his list after waking up with "wake up" just so he can cross it out). The lists are great, since she obviously can't write, but she makes perfect little squiggles on each line of a notepad. I can't even keep track of all the funny thinks she says. The other day she was talking about Ross -she still is processing the fact that he works at Children's and Ryder lives here but one has nothing to do with the other. She said I am going to see daddy in Ryder's room, but he won't be at work there because he doesn't do work. Funny.
It is so easy to look at our Ryder and see how far he has come; to see how much he has overcome, developed and grown. If you don't believe in miracles, then you probably haven't see any of my photos. Though no photo could compare to remembering how he looked after his first surgery or worse, how he looked when he had to be pulled of ECMO post-op day 3. Frail, blue, cold, battered. On full life support, surrounded by IV poles with so many pumps we lost count. So sad I couldn't even take his picture yet. Compare that to now. He is so perfect.
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| Addy, big sis tattoo! |
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| Addy, taking being a big sis seriously!! |
Friday, November 2, 2012
Giving thanks...
Since November is a good month for giving thanks, a good place to start is to be so thankful for how great our little warrier is doing!! Late on Sunday (after I managed to stretch Ryder's monitor wires/IV pole etc. over to the couch so we could see a little daylight) Ryder was told he might get to go to the FLOOR on Wednesday. Yep, out of the ICU. Of course he must have heard this so he spent a good 36 hours after that throwing up, screaming, low oxygen, etc. which effectively pushed that transfer back with fear something horrible was wrong. As it turns out, so far nothing bad, he just needed a little slower increase on his feeds and some ativan. Ativan, in case you didn't know is good stuff. Ryder now has the stitches out of his Gtube so it seems to not bother him much, he is back off the oxygen again and doing great and so we just have some work to do with getting his diuretics IV to oral, and his feeds up to goal calories...
Ryder had a great 1st Halloween. He was a giraffe in the morning, but he apparently was not fond of that costume since he pooped all over it. Next he was Dr. Ryder with custom scrubs and his own real stethescope, courtesy of the PICU. He even went on trick-or-treating rounds. Addy was a very excited purple fairy princess and has decided her favorite candy is "all the candy that I got".
And so I am holding my breath, very hopeful for a little more progress, and then...H.O.M.E. Yes...I think this really may happen...we might bring a baby home with us. I don't even know what to think...so what do you think? Will we get our Butterball home in time for Thanksgiving? That is my hope!
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| Dr. Ryder, ready for rounds!! |
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| Purple fairy princess Addy and her friend Taryn, practicing being graceful fairies! |
Sunday, October 28, 2012
Friday, October 26, 2012
One step closer!
Our warrior did great! Ryder left for the OR @730 and was back just after 9 with a brand new mic-key button...this will get that tube out of his nose and allow us to give his meds easily and supplement what he will hopefully soon be able to try from a bottle. He was extubated easily and just taken off oxygen altogether to give it a go. What a big boy! He is my superhero...thank you all for the prayers- we are so full of hope tonight!!
Wednesday, October 24, 2012
Mic-key
It's been a busy week...we are tired...except Addy, who hates to sleep. Ryder is doing wonderful. Just amazing. So it is with great excitement, anxiety, sadness, etc. etc. that we are sending him back to the OR again Fri am for a Mickey button (feeding tube). There is a ridiculous amount of emotion tied up in that little piece of plastic...but it's the next step, sometimes you just have to take it! Just along for the ride...
Thursday, October 11, 2012
We can do hard things
Life is not supposed to be easy. We all know this, we just get caught up in the details and have trouble remembering sometimes. Our little warrior has also had to learn this important lesson early.
Ryder is working on his feeds this week. He is not swallowing yet (vocal cords are moving but not coming together enough for taking bottles yet). It also seems that digesting has been a little tough this week with lots of spitting up. He doesn't seem to mind too much - usually back to smiles fairly quickly. He is still on a fair amount of oxygen but is now on sildenafil (yes, it is MORE than just viagra) to help with this and still getting regular breathing treatments (IPPV). He also is having trouble sleeping without being medicated. He likes to have a little ativan at bedtime which will buy him a few hours. Though I am pretty sure this is in no way related to his heart condition, given that his big sister also hates sleep.
So, overall it's been a really good week. It doesn't have to be easy to be good, and we can all stand to work on being thankful even if things don't exactly go our way. We can do hard things too, and a lot of the times these "hard" things give and teach us the most. That being said, it never hurts to have a little reminder...or maybe a big wooden reminder nailed up on the kitchen wall...
Ryder is working on his feeds this week. He is not swallowing yet (vocal cords are moving but not coming together enough for taking bottles yet). It also seems that digesting has been a little tough this week with lots of spitting up. He doesn't seem to mind too much - usually back to smiles fairly quickly. He is still on a fair amount of oxygen but is now on sildenafil (yes, it is MORE than just viagra) to help with this and still getting regular breathing treatments (IPPV). He also is having trouble sleeping without being medicated. He likes to have a little ativan at bedtime which will buy him a few hours. Though I am pretty sure this is in no way related to his heart condition, given that his big sister also hates sleep.
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| Ryder, 3 am party |
So what else is new? Addy is still loving school...we had to go to parent night yesterday and Ms. Connell demonstrated a math lesson. Wow. Montessori school is tough. In July Addy was tossing baby dolls around her "class" and now she has to polish silver and do math. She still says she plays all day though, so guess she is not perceiving this as "work". She is doing great in dance class and makes a wonderful big sister, loving visits with her brother!! Ross is of course still loving his job here and will be doing some serious prospective resident interviewing soon. I survived Infectious Diseases boards today...hopefully with a passing score...
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| Watching Mosters, Inc. |
Thanks to Aunt Judy for the Halloween care package!
Thanks to our "First" family for the yummy dinners!
And of course, Happy Birthday #60 Dad! Wish we could come to you to celebrate with you :)
Tuesday, October 2, 2012
News at 11...
There's a Channel 5 Van outside the hospital tonight...I'm not sure why, but I'd like to believe it's coverage of THIS news: Ryder, at age 7 months, 4 days took his breath outside today - see for yourself!!
What a great little Tuesday. Can you believe how much time we spend getting caught up in our own plans when it may just be that the best things of the day, week, month, or year were never part of those plans? Hoping for another great day for this little warrior tomorrow, and trusting that good things can come to those who wait with patience...or also those who stash a getaway car out front.
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| Bored. Waiting for security to open the garden door... |
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| Yeah! That sad story about it being my first trip outside worked!! Or maybe it was because I am just that handsome?? |
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| Whoa. |
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| Seriously awesome second walk. And next time, we are not turning back... |
Thursday, September 27, 2012
Look who's smiling again!!
For Ryder's fan club, sorry for the delay in updates! Even considering all of the [relatively] small hurdles recently, overall Ryder has has a great week. Since our last post, Ryder was on a diuretic drip for a week, and this had great results - a normal little peanut head. He weaned down on his drips again and back up and back down, etc. He is very sensitive to his sedatives and has had some withdrawal issues. But he seems to be back at a happy level of happy drugs today, and that's all that matters! He had another line infection and was restarted on antibiotics. But now he has a clean, new picc line. He has been off the ventilator again for a few days and so far, so good. He is on a little enteral (gut) feeds, going very slow, and he is back to working with physical and occupational therapy. It is actually really amazing to see how well he is doing holding his head up given all this time back in bed! But, of course he always has been an amazing little warrior.
And tomorrow, September 28th, will mark this little man's 7 month birthday. Can you believe that?? Just incredible. The big question - when oh when will this little man come home? I asked last week if I could plan to buy him a halloween costume for trick-or-treating at HOME...the reply was that I certainly could get him a costume, but he would probably be wearing it here.
The lesson of the day: Many are the plans in a [mommy's] heart, but it is the Lord's purpose that prevails. - Proverbs 19:21. At least I still get to pick out a costume for him...hmmm...it is going to be a tough choice.
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| Mommy finally jumped on the iphone bandwagon, hence the instagram pic flurry... |
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| Cuddling with mommy |
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| Sleepy face. |
The lesson of the day: Many are the plans in a [mommy's] heart, but it is the Lord's purpose that prevails. - Proverbs 19:21. At least I still get to pick out a costume for him...hmmm...it is going to be a tough choice.
Sunday, September 16, 2012
And what happened then?
Friday 9/14: "And what happened then? Well, in Whoville they say that Ryder's small head grew three sizes that day."
Yes, three sizes. Friday was a long day...Ryder's Glenn surgery requires that the blood from his head and arms flow through the new "Glenn" surgery site then through his lungs to get back to his heart now instead of going through the heart to get pumped out to the lungs first (like in a normal circulation). So, when the pressure is high in the lungs, or there is another BIG problem, it doesn't drain...and thus when I got here at 630 Friday I burst into tears. He looked AWFUL. His head was soooooo big and swollen he couldn't open his eyes and he literally looked like he got stung by a thousand bees.
And so I cried, and begged for a diuretic drip, and for somebody to do something, anything - to the resident, then to the fellow, then to the attending and then I went to work still crying. And then I got called back to consent for Ryder to go to the cath lab because Ross was dropping Addy off at preschool. When the cardiology team got a look at his poor giant noggin they immediately feared his surgical site had become narrowed and he was whisked away with not even enough time to get the blood thinners out of his system. Thankfully the Glenn was still open but both of his pulmonary arteries got stents doubling their diameters to help the drainage and he came back with [so far] no bleeding problems. My very awesome division skipped giving me any new consults on Friday - a HUGE blessing because I would never have gotten out of the hospital by the time Friday turned to Saturday.
Within 24 hrs Ryder's head went down at least a size and a half and yesterday he could open his eyes again. He smiled - probably because his headache finally felt a little better and because he is just, well, amazing. Addy came up to visit and held his hand and talked to him for a while - it is always hard to decide if it's amusing or just sad that she is completely unitimidated by all the monitors, tubes and wires but either way, it's a good thing for now. Today, I am finally getting that diuretic drip I was begging for so hopefully by tomorrow our little peanut will look like a little handsome peanut again instead of a cartoon character. He was playing with his toys all afternoon and now is fast asleep...will be praying for a LOT of wet diapers to celebrate hospital day 201, which more importantly marks two hundred and one days with our Ryder...
Yes, three sizes. Friday was a long day...Ryder's Glenn surgery requires that the blood from his head and arms flow through the new "Glenn" surgery site then through his lungs to get back to his heart now instead of going through the heart to get pumped out to the lungs first (like in a normal circulation). So, when the pressure is high in the lungs, or there is another BIG problem, it doesn't drain...and thus when I got here at 630 Friday I burst into tears. He looked AWFUL. His head was soooooo big and swollen he couldn't open his eyes and he literally looked like he got stung by a thousand bees.
And so I cried, and begged for a diuretic drip, and for somebody to do something, anything - to the resident, then to the fellow, then to the attending and then I went to work still crying. And then I got called back to consent for Ryder to go to the cath lab because Ross was dropping Addy off at preschool. When the cardiology team got a look at his poor giant noggin they immediately feared his surgical site had become narrowed and he was whisked away with not even enough time to get the blood thinners out of his system. Thankfully the Glenn was still open but both of his pulmonary arteries got stents doubling their diameters to help the drainage and he came back with [so far] no bleeding problems. My very awesome division skipped giving me any new consults on Friday - a HUGE blessing because I would never have gotten out of the hospital by the time Friday turned to Saturday.
Within 24 hrs Ryder's head went down at least a size and a half and yesterday he could open his eyes again. He smiled - probably because his headache finally felt a little better and because he is just, well, amazing. Addy came up to visit and held his hand and talked to him for a while - it is always hard to decide if it's amusing or just sad that she is completely unitimidated by all the monitors, tubes and wires but either way, it's a good thing for now. Today, I am finally getting that diuretic drip I was begging for so hopefully by tomorrow our little peanut will look like a little handsome peanut again instead of a cartoon character. He was playing with his toys all afternoon and now is fast asleep...will be praying for a LOT of wet diapers to celebrate hospital day 201, which more importantly marks two hundred and one days with our Ryder...
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| Big sister. |
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| Pee, little warrior, pee!! |
Thursday, September 6, 2012
More. Coffee. Please.
Well, if you have been following Ryder, you already knew that there was no way surgery would be THAT easy...so the little man was cruising along - until his chest tubes got pulled. MAD as a hatter. So he spent the labor day weekend fussy, crying, a mess. Stopped his feeds again, various trials of benzos, pain medications, sedatives, then benadryl (maybe itchy from pain medicine?). There was no sleep [for any of us] for a few days. Then it turned out Ryder's drain sites were a little too open and a piece of abdominal lining snuck out. Poor guy. So back to the OR on the ventilator to fix him up. He did well but then his breathing tube was too small and the air leaked around it, so he didn't do really well on the ventilator that night so the breathing tube was taken out. He did worse with that and no sleep again on the bipap mask. Then the tube went back in. NOW my lovie is sleeping peacefully since yesterday morning off and on. Starting the whole ventilator weaning thing again. But he is still cute as a button, and loves to hold hands and pet his musical giraffe! We will otherwise be busy with work, preschool and a first dance class in the next week but we do get Grandma Linda for a few days and owe a huge thanks to the Bidnes for organizing some special dinner deliveries for us!!
Friday, August 31, 2012
Post-op day 3
Well, I never thought I would say this 3 days after surgery #2 but so far Ryder looks AMAZING! Seriously incredible!! We couldn't be more thankful!!! I really don't know how the last 3 days could have been any better for this little warrior (unless of course he never needed surgery, that would be better obviously). Yesterday he started waking up more, was off his dopamine, and got rid of a LOT of water weight from surgery...we were so happy to see he already remembered how to stick his canula back in his mouth to gum it and make his dracula face...
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| Ryder trying to scare his nurse away from stripping his chest tubes |
Today foley out, back on feeds, oxygen even better, swelling practically gone and had a really good cuddle with mommy for the first time in a few weeks - what a big boy he is becoming - yeah almost 3rd percentile!! He is trying to get in some rest between visits from his fan club, because of course he has a pretty big following here in the PICU - I mean really, how much cuter could a guy look covered in tubes and betadine?
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| Guys, you would NOT believe what they did to me this week! |
Tuesday, August 28, 2012
Back from the OR!
Ryder is back and settled in the PICU and is doing great!!! He went to the OR this am around 8, had his old BT shunt removed, some clot cleared out and his "Glenn" connection made. Then his pulmonary arteries were enlarged with a patch. He was on bypass for about 2 hours and aside from a little arrhythmia early in the case he has been doing well since he came back to his room at 2ish, only on a little dopamine and milrinone (blood pressure/heart support). Tonight he will be resting on the ventilator and tomorrow if all is well, the ICU team will try to wake him up a little and see if we can't get him off the vent!!
Thank you so much for the well wishes and prayers for our little warrior. We are hoping for a quiet and stable night so he can get his rest...he still has a lot of catching up to do to go home but this is a HUGE step for him to be doing so well so soon after his 2nd big surgery! Two big thumbs up for his awesome CV surgeon and ICU team!!
Thank you so much for the well wishes and prayers for our little warrior. We are hoping for a quiet and stable night so he can get his rest...he still has a lot of catching up to do to go home but this is a HUGE step for him to be doing so well so soon after his 2nd big surgery! Two big thumbs up for his awesome CV surgeon and ICU team!!
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| Look how handsome!! |
Monday, August 27, 2012
Cath today, surgery tomorrow...
Ryder had a busy morning - we found out late Friday that as a result of his afternoon ECHO, he would need another heart cath before surgery - he has had a difference in his upper and lower extremity blood pressures but the ECHO too looked like there was a gradient difference and it was thought this represented a coarctation - narrowing- of the aorta in the area of some scarring from his first surgery. So, he rested this weekend and went back to the cath lab this morning where he had this narrowing dilated with a balloon. It went well, the only disappointing news was that his right pulmonary artery barely has any blood flow to it so this will require some patching, etc. which will make his surgery tomorrow a little more complicated/risky. Ryder's surgeon is confident, though that his pulmonary pressures look great in preparation to sew his superior vena cava (big vein that brings blood from top half of body back to heart) directly to the lung via the pulmonary vessels...this is the "Glenn" surgery (picture below). It will take away half of the work his little heart has to do so if all goes well will make him much more stable overall and able to better tolerate feeds, exercise, etc. though he will still do it all with low oxygen levels.
So, tomorrow is a very big day for our little guy. I will echo (pun intended) everything I said before his first big heart surgery - in short, despite the ups and downs this little warrior has taken us on for the last, yes, SIX months he is nothing short of amazing. Absolutely amazing. In the short time he has been in our lives he has taught us countless lessons and he is the most perfect gift we could ever have received. Please pray for Ryder tomorrow morning on his 6th month birthday as we have to let go of his hand once again and have faith that the Healer of hearts will be guiding the hands of those mending this little heart...
Monday, August 20, 2012
What could be a better day for surgery?
Well, it has been a week. Ryder has been busy...he is nearly off his milrinone as it appears the ventilator took a lot of stress off of his heart, he is back on a lot of enteral (oral) medications instead of IV, he finished antibiotics (again) and he is now doing pretty well on feeds into his little gut too. He's been asleep for much of this but we have seen a few smiles and he wakes up and grabs at his toys (and his breathing tube) for a little while each day...though most of his time is spent looking a bit like this...
And so the next surgery - rescheduled for Ryder's 6 month birthday, August 28th. So now we wait, with hope...and patience (I mean after an EPIC fail on my part trying to get 14 people to give us a surgery date all day Friday , then paging the palliative care doctor Friday evening to get someone to give me a date, then complaining to anyone who would listen all weekend that we didn't know the date for sure then trying convince the surgeon today to do the surgery before next Tuesday - NOW with patience).
and doing a little bit of this...
His big sister has been busy too. Between the zoo, nature center, park(s), bike riding, book store, swimming, etc. she can hardly find time to get baby bitty down for her nap. She started preschool today and had a great morning. They have just a couple hours a day the first week and move to half day next Monday. She was very happy to announce to her teacher that she brought an extra change of clothes "just in case I potty in my pants." Very practical this girl!
Monday, August 13, 2012
Supercalifragilisticexpialidocious
So, we have been watching a lot of Mary Poppins the last few weeks. We originally kept Addy away from TV for a while (because you are supposed to) then kept her away from most toddler shows (because Yo Gabba Gabba is CREEPY). Then we finally figured out the first kid "screen time" lesson - that if your 2-3 year-old can't sit through a 90 minute movie, TRAIN them to do this. No joke. In 90 minutes you fly a few states away, clean the house (enough) or just stare blankly into space. You can even have them lay in an ICU room for a visit and stop poking the baby (as much).
Anyway, we have moved on from Backyardigans DVDs to Tangled, to Toy story 1 and 3, Lady and the Tramp and now to "momma's movie" Mary Poppins. I am not sure how I came to own it but if a 3 year-old is willing to give over possession of something in her house, I suppose you should just take it and be thankful, right? Her favorite parts are when Mary Poppins sings Jane and Michael to sleep and the penguins dancing, obviously. I'm not sure why it took me so long to figure out the extrordinary wisdom of Mary Poppins but she is just brilliant. For example:
1) A spoonful of sugar helps the medicine go down. Yes! When I want to convince Addy to do something she isn't keen on or just have nothing else to offer, I usually make cookies-- I just never realized why! Last night we made coconut oatmeal cookies with dark chocolate chips. I used real butter. They were amazing.
2) In every job that must be done, there is an element of fun. I know Addy gets this one. She can spend an hour cleaning a table as long as you give her a spray bottle of anything and her own roll of paper towels.
3) Some people can't see past the end of their own nose. That's a easy one, just profound.
4) Why do you always complicate things that are really quite simple. This is a good one as life relates to our Ryder - because if you boil it down: a) he can't stay here forever b) it won't always feel this bad and c) we don't really have any control over any of this
5) My favorite - Supercalifragilisticexpialidocious. Something to say if you have nothing to say.
Our little princess starts preschool next week - Supercalifragilisticexpialidocious...
"Oh...Ryder got intubated again, I'm sorry" Supercalifragilisticexpialidocious.
"We are planning to leave him intubated, sedated and not feed him until surgery, we don't know when that will be yet. Do you have any questions?" Supercalifragilisticexpialidocious???
"Oh, I heard...how do you feel about that?" *&$#@%^ Supercalifragilisticexpialidocious! Actually- you could say it backwards here (dociousaliexpilisticfragicalirepus) but I guess I would have to agree with Mary Poppins in her infinite wisdom - probably going a bit too far...
Anyway, we have moved on from Backyardigans DVDs to Tangled, to Toy story 1 and 3, Lady and the Tramp and now to "momma's movie" Mary Poppins. I am not sure how I came to own it but if a 3 year-old is willing to give over possession of something in her house, I suppose you should just take it and be thankful, right? Her favorite parts are when Mary Poppins sings Jane and Michael to sleep and the penguins dancing, obviously. I'm not sure why it took me so long to figure out the extrordinary wisdom of Mary Poppins but she is just brilliant. For example:
1) A spoonful of sugar helps the medicine go down. Yes! When I want to convince Addy to do something she isn't keen on or just have nothing else to offer, I usually make cookies-- I just never realized why! Last night we made coconut oatmeal cookies with dark chocolate chips. I used real butter. They were amazing.
2) In every job that must be done, there is an element of fun. I know Addy gets this one. She can spend an hour cleaning a table as long as you give her a spray bottle of anything and her own roll of paper towels.
3) Some people can't see past the end of their own nose. That's a easy one, just profound.
4) Why do you always complicate things that are really quite simple. This is a good one as life relates to our Ryder - because if you boil it down: a) he can't stay here forever b) it won't always feel this bad and c) we don't really have any control over any of this
5) My favorite - Supercalifragilisticexpialidocious. Something to say if you have nothing to say.
Our little princess starts preschool next week - Supercalifragilisticexpialidocious...
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| Addy's supercalifragilisticexpialidocious grin. |
"We are planning to leave him intubated, sedated and not feed him until surgery, we don't know when that will be yet. Do you have any questions?" Supercalifragilisticexpialidocious???
"Oh, I heard...how do you feel about that?" *&$#@%^ Supercalifragilisticexpialidocious! Actually- you could say it backwards here (dociousaliexpilisticfragicalirepus) but I guess I would have to agree with Mary Poppins in her infinite wisdom - probably going a bit too far...
Thursday, August 9, 2012
Now I lay me down to sleep.
Sweet baby Ryder, what, oh what has been troubling you? Ryder was a little fussy last week on and off - we were thinking maybe teething? Just normal baby cranky-pants-ness? But he has been just beside himself for the last 2 days, non-stop screaming. The only way we could get him to stop wailing and sleep for a few minutes was with some serious bouncing. You know, the kind where you're practically doing squats wondering why on earth "bouncy" chairs can't just live up to their name. Bouncing is harder when you are tethered to the wall & have to move in a 4 ft radius. It's much harder when the baby turns blue and clammy when you aren't bouncing aggressively enough. He finally started getting doses of morphine and oxygen levels started taking longer to recover. Then last night a fever. Then this morning the intubation. Again. So far we have back a normal head CT, LP, tracheal aspirate and CSF gram stain, and are waiting for some viral studies and repeat cultures. He's on vancomycin, meropenem, and fluconazole while we wait. After some adjusting his sedation, he is finally getting some rest...he looks very peaceful. I wish I could get in that crib and snuggle with him, but since sleeping anywhere but this plastic couch would surely alert the crazy police (and/or social work) his trusty sugar bear is keeping a close watch through the night. Surgery Monday has been canceled...apparently that's just not part of the plan...but that's ok - we are just along for the ride after all...
Now I lay me down to sleep
I pray the Lord my soul to keep
Intubated for the night
To rest up for my life's next fight
Tuesday, August 7, 2012
Photo Book
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Sunday, August 5, 2012
Ryder's Baptism
Saturday, August 4th - as an anonymous PICU attending put it, time for Ryder to "get all Holy"!
Saturday Ryder had a great day - he was able to temporarily disconnect from his TPN/lipids/feeds and even his milrinone (long half-life) and oxygen to take a field trip to the Community Room for his baptism. Much of his family was there (except Uncle Cody, because plane trips half-way across the country are just a little $$) as well as a couple of his favorite nurses and some of his First Lutheran family. He had a great time walking the halls, bright-eyed as always and was all smiles to see that he had an audience. He is pleased with an audience of one, but an audience of 25-ish is so much better!! He was not that happy that his adventure included what he perceived to be a cold head-washing but he quickly forgot about that when he saw that he still had everyone's attention. He apologizes to Pastor Keith for turning a little blue when he was crying but wanted him to make sure he got to experience baptismal hypoxia!
Ryder then had fun traveling back to the PICU conference room where he enjoyed meeting some new faces and eating some icing off Daddy's finger, which is even better than Sweetease as it turns out!! Yum. Addy, Blake & Kelsey liked the cake but the chocolate fountain was even more fun. Yes, Ryder has already learned that his mommy overdoes things sometimes. Anyway, he played all afternoon and evening with Grandma and Grandpa and then slept ALL NIGHT after such a big day!!
A very special thank you to Jake & Kirsten & thank you to everyone who was here in person and in spirit!
Saturday Ryder had a great day - he was able to temporarily disconnect from his TPN/lipids/feeds and even his milrinone (long half-life) and oxygen to take a field trip to the Community Room for his baptism. Much of his family was there (except Uncle Cody, because plane trips half-way across the country are just a little $$) as well as a couple of his favorite nurses and some of his First Lutheran family. He had a great time walking the halls, bright-eyed as always and was all smiles to see that he had an audience. He is pleased with an audience of one, but an audience of 25-ish is so much better!! He was not that happy that his adventure included what he perceived to be a cold head-washing but he quickly forgot about that when he saw that he still had everyone's attention. He apologizes to Pastor Keith for turning a little blue when he was crying but wanted him to make sure he got to experience baptismal hypoxia!
Ryder then had fun traveling back to the PICU conference room where he enjoyed meeting some new faces and eating some icing off Daddy's finger, which is even better than Sweetease as it turns out!! Yum. Addy, Blake & Kelsey liked the cake but the chocolate fountain was even more fun. Yes, Ryder has already learned that his mommy overdoes things sometimes. Anyway, he played all afternoon and evening with Grandma and Grandpa and then slept ALL NIGHT after such a big day!!
A very special thank you to Jake & Kirsten & thank you to everyone who was here in person and in spirit!
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