Hi everyone,
Well, as the title suggests, we'll be on our way back to Boston. Our surgeon in Minneapolis is leaving to begin a transplant program at the Children's Hospital in Kansas City. Once he leaves, there will be no one in Minneapolis who can handle a transplant as complex as Natalie's. So, since they are already familiar with Natalie at Boston Children's, that is where we'll go to have wait for a heart and have a transplant once one comes available.
Obviously, this isn't what we had wanted. We like being in Minneapolis where we are closer to home, have family in town, and I can drive to Minneapolis on the weekend or take a 1 hour flight. However, this is what is best for Natalie.
The original plan was for Heidi and Natalie to leave via air ambulance tomorrow (Thursday), but Natalie spiked a fever this morning, and they are suspending those plans until Monday. That could change, but that's the tentative plan.
Natalie has been doing well, other than coming down with a couple of infections. At this point, she's been sedated and on a ventilator so long, that infections are inevitable. We're praying that she can recover and get to Boston, and hopefully they can move forward and get her off the ventilator so she's able to move and be stronger. She wants to be held and go for walks, and God knows we miss holding her and taking her for walks.
That's the update we have for now. We will update further when we have more details and a better idea of what to expect going forward. Thank you all again for the prayers, texts, and phone calls. We appreciate them very much.
Wednesday, September 17, 2014
Tuesday, September 9, 2014
Goodbye to our little friend
We're posting this one to ask for prayers for a very nice family that we've gotten to know, the Scapanski family. Their little girl, Mylee, passed away last Saturday, August 30.
While you're making your second home (temporary first home for Heidi and Natalie), you get to know others who are in the hospital. You get closer to some of them, and Mylee was definitely one of them. She was the happiest kid I've ever met, even though she had spent her entire life in ICU. That's not hyperbole, she was ALWAYS smiling and happy. If you needed to get a shot of happiness, you just walked by her room and looked in. She would be playing, laughing, or jumping around in her little crib. She was just learning to walk, and was full of life, energy and joy. She was special to all who got to know her, and everyone in the ICU loved her.
Mylee had a Berlin heart, which is basically an artificial heart that does the work of your heart when your heart can't do the work it's supposed to do. She had this device longer than any other child has had one in America (there was one child in Germany who had one longer). A cannula had slowly deteriorated, and last Saturday, it failed. There was nothing they could do to save Mylee. Even though the nurses, doctors, and surgeons see tragedies like this far too often, you can tell that this one is different. Everyone had come to love Mylee, and losing her has been especially hard.
We ask that you pray for the Scapanski family as they go through this horrible time in their lives. Also, pray for the nurses, doctors, and everyone else who has watched Mylee grow up. She was a very special little girl.
While you're making your second home (temporary first home for Heidi and Natalie), you get to know others who are in the hospital. You get closer to some of them, and Mylee was definitely one of them. She was the happiest kid I've ever met, even though she had spent her entire life in ICU. That's not hyperbole, she was ALWAYS smiling and happy. If you needed to get a shot of happiness, you just walked by her room and looked in. She would be playing, laughing, or jumping around in her little crib. She was just learning to walk, and was full of life, energy and joy. She was special to all who got to know her, and everyone in the ICU loved her.
Mylee had a Berlin heart, which is basically an artificial heart that does the work of your heart when your heart can't do the work it's supposed to do. She had this device longer than any other child has had one in America (there was one child in Germany who had one longer). A cannula had slowly deteriorated, and last Saturday, it failed. There was nothing they could do to save Mylee. Even though the nurses, doctors, and surgeons see tragedies like this far too often, you can tell that this one is different. Everyone had come to love Mylee, and losing her has been especially hard.
We ask that you pray for the Scapanski family as they go through this horrible time in their lives. Also, pray for the nurses, doctors, and everyone else who has watched Mylee grow up. She was a very special little girl.
Saturday, August 16, 2014
Finally re-listed
Hi everyone,
We got some very good news this morning. As we've shared, we had thought that we may have to go to Boston for Natalie's transplant. The reason for this was because the surgeon in Minneapolis, Dr. St. Louis, is leaving in October to develop a transplant program at the children's hospital in Kansas City. If he leaves, there is nobody here who could do a transplant as complex as Natalie's.
After speaking with Dr. St. Louis this morning, he has agreed to continue to see Natalie through and perform her transplant, even if that means traveling from Kansas City to come back to Minneapolis to do it. So, that means we can remain in Minneapolis closer to home, and where we have family. We are very grateful to Dr. St. Louis for agreeing to this, and to God for getting Natalie to this point. It is nothing short of miraculous that she is doing as well as she is, compared to where she was a week and a half ago, when they weren't sure if she'd make it through that evening. Thank you to all of you who have been praying for her, and continue to do so.
Heidi and I are going to take a much needed break this evening and go see the Vikings final home pre-season game. We'll post some pictures and give a report sometime soon.
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We got some very good news this morning. As we've shared, we had thought that we may have to go to Boston for Natalie's transplant. The reason for this was because the surgeon in Minneapolis, Dr. St. Louis, is leaving in October to develop a transplant program at the children's hospital in Kansas City. If he leaves, there is nobody here who could do a transplant as complex as Natalie's.
After speaking with Dr. St. Louis this morning, he has agreed to continue to see Natalie through and perform her transplant, even if that means traveling from Kansas City to come back to Minneapolis to do it. So, that means we can remain in Minneapolis closer to home, and where we have family. We are very grateful to Dr. St. Louis for agreeing to this, and to God for getting Natalie to this point. It is nothing short of miraculous that she is doing as well as she is, compared to where she was a week and a half ago, when they weren't sure if she'd make it through that evening. Thank you to all of you who have been praying for her, and continue to do so.
Heidi and I are going to take a much needed break this evening and go see the Vikings final home pre-season game. We'll post some pictures and give a report sometime soon.
Here's a pic of Natalie with her present from last week's game.
Friday, August 15, 2014
Overdue update
Hi everyone,
It's been quite a while, so I thought I'd get on & do an update. Many of you follow us in that crazy Facebook land, but some steer clear of there, so here we go.
Natalie is finally stable after quite a scary bout with pneumonia & a lung infection. She is still heavily sedated and on a paralytic, but she's much better than she was. She's finally doing well enough that I felt comfortable coming back home and getting back to work. (A huge thank you to MDU, by the way, for all of their support and understanding through all of this). I'll head back tonight to spend the weekend.
We're meeting with the doctors tomorrow to discuss when we can get Natalie back on the transplant list. The surgeon in Minneapolis doesn't seem to think he should perform the surgery unless she's off of the breathing tube, and we need to find out why. They've spoken with Boston (the doctors there, not the entire city, that would take a while), and they would be fine with doing the transplant there. We certainly would prefer to stay in Minneapolis, but we'll obviously go to Boston if need be. We're concerned with waiting to re-list her, as she may miss an opportunity for the right heart, and there is always the chance she could get sick again, and that chance goes up the longer we wait. So, we'll have a lot to think about and pray about this weekend.
We also need to say a huge thank you to Barb, Heidi's mom, for staying out in Minneapolis. She's been out there for quite a while now, and has put her home life on hold as well to be with us. It's reassuring for me to know that Heidi isn't alone while all of this is going on, as I have to try to balance work & being out there.
On a lighter note, Heidi's dad and I were able to attend the Vikings game last Friday. I'll put a couple pics below. Also, Heidi and I will be catching the other Vikings home pre-season game tomorrow night. It's nice to be able to watch the next Super Bowl champs play in person in their new temporary home. Outdoor football is awesome. Cassel, Jennings, and Patterson looked really good, as did the defense. Bridgewater made some rookie mistakes, but he still looked solid. Ponder looked like, well, Ponder...unfortunately.
It's been quite a while, so I thought I'd get on & do an update. Many of you follow us in that crazy Facebook land, but some steer clear of there, so here we go.
Natalie is finally stable after quite a scary bout with pneumonia & a lung infection. She is still heavily sedated and on a paralytic, but she's much better than she was. She's finally doing well enough that I felt comfortable coming back home and getting back to work. (A huge thank you to MDU, by the way, for all of their support and understanding through all of this). I'll head back tonight to spend the weekend.
We're meeting with the doctors tomorrow to discuss when we can get Natalie back on the transplant list. The surgeon in Minneapolis doesn't seem to think he should perform the surgery unless she's off of the breathing tube, and we need to find out why. They've spoken with Boston (the doctors there, not the entire city, that would take a while), and they would be fine with doing the transplant there. We certainly would prefer to stay in Minneapolis, but we'll obviously go to Boston if need be. We're concerned with waiting to re-list her, as she may miss an opportunity for the right heart, and there is always the chance she could get sick again, and that chance goes up the longer we wait. So, we'll have a lot to think about and pray about this weekend.
We also need to say a huge thank you to Barb, Heidi's mom, for staying out in Minneapolis. She's been out there for quite a while now, and has put her home life on hold as well to be with us. It's reassuring for me to know that Heidi isn't alone while all of this is going on, as I have to try to balance work & being out there.
On a lighter note, Heidi's dad and I were able to attend the Vikings game last Friday. I'll put a couple pics below. Also, Heidi and I will be catching the other Vikings home pre-season game tomorrow night. It's nice to be able to watch the next Super Bowl champs play in person in their new temporary home. Outdoor football is awesome. Cassel, Jennings, and Patterson looked really good, as did the defense. Bridgewater made some rookie mistakes, but he still looked solid. Ponder looked like, well, Ponder...unfortunately.
We had really good seats. This pic was taken right from our seat.
Tuesday, August 5, 2014
Days turn to Weeks here
Hello everyone,
As hard days have turned into hard weeks, we continue to ask you to pray for Natalie. She has been intubated and on the ventilator now for almost three weeks. During this time we have struggled to keep her fluid balance stable where she can have decreased fluid and in turn a decreased workload for her heart and lungs. It's been a very trying time for all of us. Brad has been here most of the time as well as my mom and dad. We sure miss our little girls big blue eyes and all her pretty teeth when she smiles.
I am not sure what all to say here today, but please continue to pray for her. She needs God healing right now.
As hard days have turned into hard weeks, we continue to ask you to pray for Natalie. She has been intubated and on the ventilator now for almost three weeks. During this time we have struggled to keep her fluid balance stable where she can have decreased fluid and in turn a decreased workload for her heart and lungs. It's been a very trying time for all of us. Brad has been here most of the time as well as my mom and dad. We sure miss our little girls big blue eyes and all her pretty teeth when she smiles.
I am not sure what all to say here today, but please continue to pray for her. She needs God healing right now.
Saturday, July 19, 2014
Our hardest day yet
Sorry it's been so long since we've updated, but there hasn't been much to report.
Yesterday was a difficult day, no, it sucked. Well, the first half of the day did, the second half of the day was decompression followed by coma/sleep.
Things happened very quickly. Natalie was happy on Sunday, eating corn on the cob and hanging out at the pool with friends. She started getting sick that night, and progressively got worse throughout the evening. Heidi brought Natalie to the hospital on Monday because she wasn't feeling well at all. She hasn't been sleeping (maybe 2-3 hours a day total, naps included), and has been uncomfortable and miserable. They first admitted her to the recovery floor, but later moved her to ICU. After many tests & observation, they concluded that her heart function is decreasing more rapidly than they expected. After further testing, they found that the heart was not doing enough to keep her liver and kidneys healthy, and they were starting to experience the beginnings of failure. Her heart was working so hard to make her lungs work that it didn't have enough left to give her liver and kidneys what they need to function. You could see it by looking at Natalie, she was extremely puffy from fluid and was extremely uncomfortable. She gained almost four pounds in 36 hours, which was all fluid.
The solution they thought was best was to intubate (put in a breathing tube) so that her heart wouldn't have to work to make her lungs work, then it would be able to give her liver and kidneys what they need to function properly. Dr. Amedori had talked about this on Wednesday, and they began discussing it as a team. I flew out on Thursday.
They discussed it with us on Friday morning, and we could tell that there was some apprehension among her surgical team. We've been through some major surgeries and decisions, but we knew this one was different. The intubation carried with it some very major risks because of her lowered heart function. They weren't sure that her heart would be able to tolerate the sedation. If it didn't, the only option was to put her on the heart/lung bypass machine (ECMO), but the chances of her surviving that would have been slim. They had the surgical team for the bypass machine waiting outside the room in case they were needed.
So, we had to make the decision of whether to proceed with the intubation or not. If not, we would have had to just hope that they could make her heart function with medication long enough for a heart to come so she could have a transplant, which was highly unlikely to be successful. At this point, her liver was too sick to accept a heart until it healed. It was the hardest decision we've made yet, and in the end, we decided to go ahead with the intubation.
After all the stress, tears, praying, and worrying; the intubation took about 10 minutes and she pulled through like a champ. We could tell that even many on the surgical team were amazed that it went as well as it did. Praise God.
Her liver function numbers were looking better last night already, and they're looking even better this morning. We hope they continue to fall, as they still aren't low enough for them to perform her transplant, but they're trending in the right direction. We're hoping that those liver function numbers improve so that she'll be able to have her transplant when a heart comes available. We're not out of the woods yet, but we're in a much better spot than we were 24 hours ago.
We want to make sure to say a special thanks to family that spent the day with us yesterday. We owe more than we could ever repay to Paul, Barb, Steve, and Nancy. It was more helpful than any of them could know to have them here to pray with us and help us through this decsion. Steve and Nancy have allowed Heidi & Natalie to stay with them while we're in Minneapolis (and me when I come out on the weekends), and Nancy spent most of the day with us here yesterday and Steve came by as well. Paul and Barb drove all night from Billings, and into the lovely rush hour Minneapolis traffic to be here with us yesterday and be with us through this. Thank you also to Nadine for being here throughout this trip, and also to Mark & Micki. We have more friends and family on the way today. We're very thankful to have family and friends to help us through all of this. It's a little more than we can endure on our own. Mostly, we thank God for being with us and with Natalie. Without our faith, there is no way we'd be able to do it. He has given us comfort, strength, and everything we need to endure this storm. We pray it is over soon and that Natalie can have a happy childhood and life.
Yesterday was a difficult day, no, it sucked. Well, the first half of the day did, the second half of the day was decompression followed by coma/sleep.
Things happened very quickly. Natalie was happy on Sunday, eating corn on the cob and hanging out at the pool with friends. She started getting sick that night, and progressively got worse throughout the evening. Heidi brought Natalie to the hospital on Monday because she wasn't feeling well at all. She hasn't been sleeping (maybe 2-3 hours a day total, naps included), and has been uncomfortable and miserable. They first admitted her to the recovery floor, but later moved her to ICU. After many tests & observation, they concluded that her heart function is decreasing more rapidly than they expected. After further testing, they found that the heart was not doing enough to keep her liver and kidneys healthy, and they were starting to experience the beginnings of failure. Her heart was working so hard to make her lungs work that it didn't have enough left to give her liver and kidneys what they need to function. You could see it by looking at Natalie, she was extremely puffy from fluid and was extremely uncomfortable. She gained almost four pounds in 36 hours, which was all fluid.
The solution they thought was best was to intubate (put in a breathing tube) so that her heart wouldn't have to work to make her lungs work, then it would be able to give her liver and kidneys what they need to function properly. Dr. Amedori had talked about this on Wednesday, and they began discussing it as a team. I flew out on Thursday.
They discussed it with us on Friday morning, and we could tell that there was some apprehension among her surgical team. We've been through some major surgeries and decisions, but we knew this one was different. The intubation carried with it some very major risks because of her lowered heart function. They weren't sure that her heart would be able to tolerate the sedation. If it didn't, the only option was to put her on the heart/lung bypass machine (ECMO), but the chances of her surviving that would have been slim. They had the surgical team for the bypass machine waiting outside the room in case they were needed.
So, we had to make the decision of whether to proceed with the intubation or not. If not, we would have had to just hope that they could make her heart function with medication long enough for a heart to come so she could have a transplant, which was highly unlikely to be successful. At this point, her liver was too sick to accept a heart until it healed. It was the hardest decision we've made yet, and in the end, we decided to go ahead with the intubation.
After all the stress, tears, praying, and worrying; the intubation took about 10 minutes and she pulled through like a champ. We could tell that even many on the surgical team were amazed that it went as well as it did. Praise God.
Her liver function numbers were looking better last night already, and they're looking even better this morning. We hope they continue to fall, as they still aren't low enough for them to perform her transplant, but they're trending in the right direction. We're hoping that those liver function numbers improve so that she'll be able to have her transplant when a heart comes available. We're not out of the woods yet, but we're in a much better spot than we were 24 hours ago.
These top 3 pictures are from Sunday at Mark & Micki's house. Fun times.
This is Thursday evening, you can see how puffy she is.
Right before the intubation on Friday afternoon.
Right after the intubation
We want to make sure to say a special thanks to family that spent the day with us yesterday. We owe more than we could ever repay to Paul, Barb, Steve, and Nancy. It was more helpful than any of them could know to have them here to pray with us and help us through this decsion. Steve and Nancy have allowed Heidi & Natalie to stay with them while we're in Minneapolis (and me when I come out on the weekends), and Nancy spent most of the day with us here yesterday and Steve came by as well. Paul and Barb drove all night from Billings, and into the lovely rush hour Minneapolis traffic to be here with us yesterday and be with us through this. Thank you also to Nadine for being here throughout this trip, and also to Mark & Micki. We have more friends and family on the way today. We're very thankful to have family and friends to help us through all of this. It's a little more than we can endure on our own. Mostly, we thank God for being with us and with Natalie. Without our faith, there is no way we'd be able to do it. He has given us comfort, strength, and everything we need to endure this storm. We pray it is over soon and that Natalie can have a happy childhood and life.
Friday, April 18, 2014
The next chapter has begun!
Well, as you are probably aware our lives have been a little crazy over the past few months, but we are happy to tell you that we are turning the page to a new chapter. I am not sure exactly which chapter we are on right now, but nonetheless, a new one has begun.
I have had so many people tell me to write things down, because when this is all done your could write a book. You really can't make this up if your tried. You have to live it to tell about it.
So there we sat. Finally after hashing everything out with the insurance company about flying us to Minneapolis we were on our way. We sat in the back of the ambulance, at the airport, when the medic asked to see my drivers license because there was a problem with the one he sent in. It was expired. I had just renewed it when I got married, less that three years ago, so I didn't think to renew it before going to Boston. TSA let us fly there, no problem and no questions even asked. They strip search you if you carry formula for your infant, but I guess an expired license is okay. The pilot came to the ambulance and said that they couldn't take us because my license was expired. The tears immediately began to fall. I had spent the day packing and running errands to get ready to leave Boston only to turn around and go right back where we came from. The funny thing in all this is that if I would have had a library card with my name on it, we could have flown. I guess a library is considered a government agency and they would have issued a government card. I didn't have a library card with me, are you kidding me. That's all it would have taken to get to Minneapolis that night... Moral of the story, always carry your library card with you. Never leave home without it.
Brad was able to overnight my social security card and they used that and my Sam's club card to allow me to board the plane (the medical flight plane, not commercial). Second moral of the story; thank goodness that Sam's puts a 1/4 by1/4 inch picture on the back of your membership card. You may need to use it as a photo id someday.
We did eventually make it to Minneapolis on Friday, April 11 and it felt so good. Over the weekend, we got to visit with Brad and a lot of doctors who stopped to see Natalie and joke about my drivers license. It is quite the conversation starter and like I said, you can't make this stuff up. Brad flew home on Sunday and the week began. We knew it would be a lot of test and procedures for Natalie as we went forward with the evaluation for the heart transplant.
Natalie has been such a good girl through this whole thing. She handles things much better than I do most days. Test after test and doctor after doctor! She is amazing. Grumpy sometimes, but amazing. We had a few rough days when we first got her as she had gotten extremely dehydrated and lost a full kilo, (2.2 pounds) in about a week. We are still not sure why she started to lose fluid so quickly, but we were able to give a little more fluid and decrease her diuretics to get her stable again. She looked pretty sick there for a few days. Today she looked great.
Today we sang, danced, walked and ate. All things that we had not been doing in the past 2 months. It was the first real glimpse of Natalie that I have seen and it felt so good to see her again.
After all her tests, another trip to the cath lab (I think that makes 10 now), a CT scan and another PICC line rewire, we got the good news from the team.
We have officially listed Natalie for a heart transplant!!!! I feel happy, sad, scared, mad, nervous and hopeful all at one time. Believe me this is the last thing that Brad and I thought we would be doing in our lifetime.
It hasn't been without tears, questions to God and complete breaks downs. You just wonder why these little babies must endure such hard trials at such an early age. Boston has a program called beads of the heart. There is a bead for every major event that your child has gone through, from admission to transplant. Natalie has 46 beads on her chain. That is a lot of events. Holidays in the hospital, listing for transplant and I have the bead to add when she gets her new heart. I pray each night that God will bring Natalie health and healing. I never thought that it might be through receiving a new heart.
Please continue to pray for Natalie. She has a long way to go still. Natalie has been listed as a 1A which is the highest level and the most urgent for needing a heart. She will start accruing time on the list now and we have to wait for a match in size and blood type to become available. We pray that a family is brave enough to consider donating a heart for Natalie so that she may live and play many more days.
I will try to update you as we wait here in Minneapolis. I have a computer right in our room which makes it much easier. I will have to find a way to add some photos of her. She is looking more like a toddler these days.
I have had so many people tell me to write things down, because when this is all done your could write a book. You really can't make this up if your tried. You have to live it to tell about it.
So there we sat. Finally after hashing everything out with the insurance company about flying us to Minneapolis we were on our way. We sat in the back of the ambulance, at the airport, when the medic asked to see my drivers license because there was a problem with the one he sent in. It was expired. I had just renewed it when I got married, less that three years ago, so I didn't think to renew it before going to Boston. TSA let us fly there, no problem and no questions even asked. They strip search you if you carry formula for your infant, but I guess an expired license is okay. The pilot came to the ambulance and said that they couldn't take us because my license was expired. The tears immediately began to fall. I had spent the day packing and running errands to get ready to leave Boston only to turn around and go right back where we came from. The funny thing in all this is that if I would have had a library card with my name on it, we could have flown. I guess a library is considered a government agency and they would have issued a government card. I didn't have a library card with me, are you kidding me. That's all it would have taken to get to Minneapolis that night... Moral of the story, always carry your library card with you. Never leave home without it.
Brad was able to overnight my social security card and they used that and my Sam's club card to allow me to board the plane (the medical flight plane, not commercial). Second moral of the story; thank goodness that Sam's puts a 1/4 by1/4 inch picture on the back of your membership card. You may need to use it as a photo id someday.
We did eventually make it to Minneapolis on Friday, April 11 and it felt so good. Over the weekend, we got to visit with Brad and a lot of doctors who stopped to see Natalie and joke about my drivers license. It is quite the conversation starter and like I said, you can't make this stuff up. Brad flew home on Sunday and the week began. We knew it would be a lot of test and procedures for Natalie as we went forward with the evaluation for the heart transplant.
Natalie has been such a good girl through this whole thing. She handles things much better than I do most days. Test after test and doctor after doctor! She is amazing. Grumpy sometimes, but amazing. We had a few rough days when we first got her as she had gotten extremely dehydrated and lost a full kilo, (2.2 pounds) in about a week. We are still not sure why she started to lose fluid so quickly, but we were able to give a little more fluid and decrease her diuretics to get her stable again. She looked pretty sick there for a few days. Today she looked great.
Today we sang, danced, walked and ate. All things that we had not been doing in the past 2 months. It was the first real glimpse of Natalie that I have seen and it felt so good to see her again.
After all her tests, another trip to the cath lab (I think that makes 10 now), a CT scan and another PICC line rewire, we got the good news from the team.
We have officially listed Natalie for a heart transplant!!!! I feel happy, sad, scared, mad, nervous and hopeful all at one time. Believe me this is the last thing that Brad and I thought we would be doing in our lifetime.
It hasn't been without tears, questions to God and complete breaks downs. You just wonder why these little babies must endure such hard trials at such an early age. Boston has a program called beads of the heart. There is a bead for every major event that your child has gone through, from admission to transplant. Natalie has 46 beads on her chain. That is a lot of events. Holidays in the hospital, listing for transplant and I have the bead to add when she gets her new heart. I pray each night that God will bring Natalie health and healing. I never thought that it might be through receiving a new heart.
Please continue to pray for Natalie. She has a long way to go still. Natalie has been listed as a 1A which is the highest level and the most urgent for needing a heart. She will start accruing time on the list now and we have to wait for a match in size and blood type to become available. We pray that a family is brave enough to consider donating a heart for Natalie so that she may live and play many more days.
I will try to update you as we wait here in Minneapolis. I have a computer right in our room which makes it much easier. I will have to find a way to add some photos of her. She is looking more like a toddler these days.
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