We just got word (9:35a) that Silje is on the heart pump machine. They told us before all this that she wouldn't have enough blood in her little body to prime the machine herself, so they would have to do it for her. I guess she's truly in their hands now!
I have to say that hers is not the only heart that could use some help right now!
Monday, May 16, 2011
Started,... or should I say Launched?
The word came to the waiting room from the surgeon's nurse that the procedure started about ten minutes ago at 9:05. Should take in the neighborhood of three hours.
Jeni's folks are here now and we're sitting in the waiting room together.
The shuttle just launched about the same time as Silje's surgery started. Off we all go.... Hold on tight!
Jeni's folks are here now and we're sitting in the waiting room together.
The shuttle just launched about the same time as Silje's surgery started. Off we all go.... Hold on tight!
The Big Morning
They came and wheeled Silje away on her bed about a half hour ago. She had a good night. We visited her a couple of times in the middle of the night. A nurse, a respiratory therapist and one other person came and got her around 8:00.
We got to give her lots of hugs and kisses before she left.
If things are on schedule, she's in the O.R. right now.
I'll try to keep things up to date as things progress.
We're waiting for Pam and Don to arrive--they're about 20 minutes away right now.
Then we wait....
We got to give her lots of hugs and kisses before she left.
If things are on schedule, she's in the O.R. right now.
I'll try to keep things up to date as things progress.
We're waiting for Pam and Don to arrive--they're about 20 minutes away right now.
Then we wait....
Sunday, May 15, 2011
Field Trip
One of the staff in the NICU commented on Silje's upcoming "field trip." That made me laugh. Not too many laughs in the last few days. A couple, here and there--we try--but it's difficult when things are coming at you so fast. ...and strange to think that things are coming at you so fast when there are hours of sitting around. We're not doing nothing, we're sitting with our girl. But time has taken on a different feel these last few days.
Some things to update on:
The person performing the surgery, Dr. Abraham, stopped by to discuss with us. He gave us some new information and confirmed a bunch of what we've already heard. One thing of note that he said is that the success rate in this type of surgery is 95%, not 80% as we'd previously understood. So, that sounded good..., well better!
The pediatric cardiologist, Dr. Abarbenell (I think that's the spelling!) also clued us in on some of the things we had questions about. You can see the doctors in this photo--Abraham on the left, Abarbenell on the right.
Surgery is scheduled for 8:00a tomorrow (Monday). It should last about three hours. Recovery from surgery will take about a week in the PICU and then move over to the NICU after that where Silje will learn to nurse and all the other things she should be learning right now.
Now, I need to mention something remarkable that happened today. We got to the hospital a little later this morning after getting ready, pumping, getting breakfast, checking out of the hotel, packing up, etc. When we arrived, I helped Jeni inside and then went out to the car to bring in a couple of bags. I was outside for two minutes max! When I got back inside, Jeni and some random woman I'd never seen before were standing there crying over a bag laying on the floor. What in the world?!
When Stian was born, Jeni met a bunch of women (a dozen or so) in an online forum and they got along so well they have kept in touch these three and a half years. (They all had kids around that time.) Well, they all got together and put together a care package and this person, Jess, brought it over from Columbus, OH--about a three and half hour drive in the mist. And when I say a care package, it is one of those big shopping bags from IKEA packed full of food, toys, feel-goods and gift cards. Jeni had never met Jess in person before and didn't recognize her at first from her online photos. And here she was, bringing the well wishes of the dozen or so from the group, and a number more.
And this evening, Jeni's mother relayed to me this:
"Don’s brother has started a prayer chain for [Silje], my cousin Carol has her whole church praying for her and has even given her name to a Christian radio station so people all over Kansas are praying for her. Brian and Enid have added her to their church prayer chain – who knows how many others. I’ve received notes of support and love from so many people. Lyle even sent a note telling us that you just have to remember the most important thing is love. I just think there is a so much love out there for you guys that you should be able to feel it."
Well, we do. We are absolutely stunned by the outpouring from all corners.
I will close off with a note about the transport team. Two of the members that transported Silje from Lafayette to Indianapolis were on the transport team that transported her this afternoon from the NICU to the PICU. A much shorter ride this time--a few blocks as opposed to 60 miles. These people are really great. And in the midst of all the wires and tubes and electronic gizmos and gadgets that need to be disconnected and reconnected on a mobile cart, they had time for kind soothing words to a little girl who hardly knows they are there.
Everyone here has been nothing but caring and kind and compassionate.
Some things to update on:
The person performing the surgery, Dr. Abraham, stopped by to discuss with us. He gave us some new information and confirmed a bunch of what we've already heard. One thing of note that he said is that the success rate in this type of surgery is 95%, not 80% as we'd previously understood. So, that sounded good..., well better!
The pediatric cardiologist, Dr. Abarbenell (I think that's the spelling!) also clued us in on some of the things we had questions about. You can see the doctors in this photo--Abraham on the left, Abarbenell on the right.
Surgery is scheduled for 8:00a tomorrow (Monday). It should last about three hours. Recovery from surgery will take about a week in the PICU and then move over to the NICU after that where Silje will learn to nurse and all the other things she should be learning right now.
Now, I need to mention something remarkable that happened today. We got to the hospital a little later this morning after getting ready, pumping, getting breakfast, checking out of the hotel, packing up, etc. When we arrived, I helped Jeni inside and then went out to the car to bring in a couple of bags. I was outside for two minutes max! When I got back inside, Jeni and some random woman I'd never seen before were standing there crying over a bag laying on the floor. What in the world?!
When Stian was born, Jeni met a bunch of women (a dozen or so) in an online forum and they got along so well they have kept in touch these three and a half years. (They all had kids around that time.) Well, they all got together and put together a care package and this person, Jess, brought it over from Columbus, OH--about a three and half hour drive in the mist. And when I say a care package, it is one of those big shopping bags from IKEA packed full of food, toys, feel-goods and gift cards. Jeni had never met Jess in person before and didn't recognize her at first from her online photos. And here she was, bringing the well wishes of the dozen or so from the group, and a number more.
And this evening, Jeni's mother relayed to me this:
"Don’s brother has started a prayer chain for [Silje], my cousin Carol has her whole church praying for her and has even given her name to a Christian radio station so people all over Kansas are praying for her. Brian and Enid have added her to their church prayer chain – who knows how many others. I’ve received notes of support and love from so many people. Lyle even sent a note telling us that you just have to remember the most important thing is love. I just think there is a so much love out there for you guys that you should be able to feel it."
Well, we do. We are absolutely stunned by the outpouring from all corners.
I will close off with a note about the transport team. Two of the members that transported Silje from Lafayette to Indianapolis were on the transport team that transported her this afternoon from the NICU to the PICU. A much shorter ride this time--a few blocks as opposed to 60 miles. These people are really great. And in the midst of all the wires and tubes and electronic gizmos and gadgets that need to be disconnected and reconnected on a mobile cart, they had time for kind soothing words to a little girl who hardly knows they are there.
Everyone here has been nothing but caring and kind and compassionate.
Saturday, May 14, 2011
Positive Energy and Thoughts
The idea now is hope and positive energy and thoughts. That's where we go now.
Silje has been doing great in the NICU. Yesterday she had a little fluid in one lung, and the breathing tube was not quite far enough in, but they corrected both of those things and her breathing and oxygen levels came back to where they need to be. This evening her blood gasses all looked great. They had a cloth over her forehead to shade her eyes to make things just a little more restful. Tomorrow afternoon (Sunday) they transport her over to the Children's Hospital where she will rest overnight in preparation for her surgery on Monday morning. It is currently scheduled for 8:00am. That's when she will need all the positive energy she can get--and her parents will be the most terrified.
Jeni's parents came down to Indianapolis from our home in Battle Ground this morning and brought Stian down to see us; the first time we've seen him since Wednesday afternoon. Don arrived from Wisconsin yesterday. Stian and his mommy had a rather tearful reunion, which of course brought mist to everyone else's eyes. (The emotions in all of this run so close to the surface.)
Jeni and her parents went to see Silje while Stian and I went to get a bagel. Then we drove around trying to find a car parts place so I could get a can of stuff to re-charge the A/C on my car. Some everyday mundane things still find their way in.
We all had lunch together and then Stian and I swam in the hotel swimming pool for a couple of hours. Another family was in the pool with us. The little boy from that family told Stian that his little sister needed to get bigger and put on weight (Apparently a preemie). Stian told that little boy that his little sister needed surgery. (The hotel we are in is associated with the hospital, so it's not so odd that we would run into another family with a child in the NICU.)
With tears and hugs, Grandma and Grandpa took Stian back home to Battle Ground, leaving us behind. Don later wrote to say that Stian was asleep five minutes into the ride and slept the whole way.
This evening at the hospital, Silje was still doing great. We talked with the doctor in the NICU and he told us how the surgeons at the Children's Hospital have done these surgeries many many times. He was very calming. Then three of the folks from their transport group stopped by to see if there was anything we needed to know about the transport over to the PICU (pediatric intensive care unit) from the NICU. Turns out we saw the exact procedure they will use when they transported Silje from Lafayette to Indianapolis--this time will just be a few blocks, however.
And then we got to just sit with her for a long time and hold her foot. She was practice nursing with her mouth. One thing they told us is that she might forget how to do that and need to learn it over again once the recovery process is done. We'll be happy to teach her!
We have gotten so much support from all corners. From folks here at the hospital, from family and friends in the Lafayette area and from family and friends in Minnesota, Washington, Kansas, Texas, Oregon, California, Norway and all over the place via Facebook and the web. We appreciate it immensely. And we feel the positive energy and thoughts from all of you.
Silje has been doing great in the NICU. Yesterday she had a little fluid in one lung, and the breathing tube was not quite far enough in, but they corrected both of those things and her breathing and oxygen levels came back to where they need to be. This evening her blood gasses all looked great. They had a cloth over her forehead to shade her eyes to make things just a little more restful. Tomorrow afternoon (Sunday) they transport her over to the Children's Hospital where she will rest overnight in preparation for her surgery on Monday morning. It is currently scheduled for 8:00am. That's when she will need all the positive energy she can get--and her parents will be the most terrified.
Jeni's parents came down to Indianapolis from our home in Battle Ground this morning and brought Stian down to see us; the first time we've seen him since Wednesday afternoon. Don arrived from Wisconsin yesterday. Stian and his mommy had a rather tearful reunion, which of course brought mist to everyone else's eyes. (The emotions in all of this run so close to the surface.)
Jeni and her parents went to see Silje while Stian and I went to get a bagel. Then we drove around trying to find a car parts place so I could get a can of stuff to re-charge the A/C on my car. Some everyday mundane things still find their way in.
We all had lunch together and then Stian and I swam in the hotel swimming pool for a couple of hours. Another family was in the pool with us. The little boy from that family told Stian that his little sister needed to get bigger and put on weight (Apparently a preemie). Stian told that little boy that his little sister needed surgery. (The hotel we are in is associated with the hospital, so it's not so odd that we would run into another family with a child in the NICU.)
With tears and hugs, Grandma and Grandpa took Stian back home to Battle Ground, leaving us behind. Don later wrote to say that Stian was asleep five minutes into the ride and slept the whole way.
This evening at the hospital, Silje was still doing great. We talked with the doctor in the NICU and he told us how the surgeons at the Children's Hospital have done these surgeries many many times. He was very calming. Then three of the folks from their transport group stopped by to see if there was anything we needed to know about the transport over to the PICU (pediatric intensive care unit) from the NICU. Turns out we saw the exact procedure they will use when they transported Silje from Lafayette to Indianapolis--this time will just be a few blocks, however.
And then we got to just sit with her for a long time and hold her foot. She was practice nursing with her mouth. One thing they told us is that she might forget how to do that and need to learn it over again once the recovery process is done. We'll be happy to teach her!
We have gotten so much support from all corners. From folks here at the hospital, from family and friends in the Lafayette area and from family and friends in Minnesota, Washington, Kansas, Texas, Oregon, California, Norway and all over the place via Facebook and the web. We appreciate it immensely. And we feel the positive energy and thoughts from all of you.
Friday, May 13, 2011
Silje Arlene Loftus-Skjervold
An update on things happening in the new world of Silje Arlene (formerly known as Pickles): We, Jeni, Silje and I are currently in Indianapolis at a place called St. Vincent's Hospital. Silje was transported here from St. Elizabeth in Lafyette by a team of medical transporters from St. V yesterday afternoon. Earlier in the day, a very astute doctor thought that things didn't seem quite right--not terrible, but just not right. And she could hear a murmur in Silje's heart. She went ahead and ordered an echo cardiogram. Normally, they would do the echo cardiogram themselves (St. E, that is) and send the results electronically to St. V for the pediatric cardiologist to take a look at. The turn-around would be a couple of hours. However, a pediatric cardiologist from St. V happened to be in the building, and he came and did the examination himself.Silje has an interrupted aortic arch. Undiscovered, she would have lasted a couple more days, gotten really sick and then needed emergency surgery to try to repair it. Discovered when it was, she still needs surgery (and this is very dangerous surgery), but at least they can schedule it, get her to a nice stable state and plan out everything carefully.
Today is Friday. Her surgery is currently scheduled for Monday, probably early in the day. The doctor who did the initial echo cardiogram told us that (1). the problem Silje has is completely repairable and (2). there is an 80% rate of success for a positive outcome. Needless to say, the remaining 20% terrifies us.
There is much more to say and there are many more questions. And probably there will be further posts as we sit and wait these next days and weeks. St. Vincent's has been amazing in finding us a place to stay right near by. They have reduced the number of things we need to worry about enormously.
Silje is doing very well, considering. She has tubes and wires and all manner of gadgets and devices hooked up to her measuring and administering all sorts of things. A hospital shot is not always the most cheery, but you can see in this photo, in spite of everything, she looks rather comfy lying there. She reacts to Jeni's and my voices and later today we will be able to touch her skin-to-skin--and that will be nice.
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