Hello everyone. We have a slight change to the schedule for services for Natalie. The funeral schedule was correct, and will still take place at Century Baptist Church in Bismarck at 10:30 am on Thursday, October 9.
However, the schedule for the visitation will be changed. It will be at Parkway Funeral Home, at 2330 Tyler Parkway in Bismarck. It's over in the Lowe's area, tucked in behind the fire station. Click here for a link to a map. Hours for family to visit is from 4:00 - 5:00, and hours for everyone else is from 5:00 - 7:00 (although we expect to keep it open a little longer).
Everyone is invited to both the visitation and funeral service. We know Natalie touched many lives, even those of people whom we haven't met yet.
Thank you all for your continued prayers, phone calls, texts, visits, support, and encouragement. We truly appreciate it, and will continue to need it through these next days, weeks, and years without Natalie. Mostly, we want to thank God. We know that He used Natalie's life in order to draw people to Him, and we draw comfort from the promise that He makes that we will all be together again.
Sunday, October 5, 2014
Saturday, October 4, 2014
Services for Natalie
Hi everyone. The service to celebrate Natalie's life will be on Thursday October 9, at 10:30 am. It will take place at Century Baptist Church, located at 205 Colt Avenue in Bismarck ND. Click here for a link to the church on Google maps.
Everyone who was touched by Natalie's journey is invited to attend. If you'd like to attend, please do so.
We are still working on the details of the exact time, but there will be a viewing on Wednesday evening at Eastgate Funeral Home, located at 2302 East Divide Avenue in Bismarck. We will update tomorrow after we figure out the exact time.
Also, some people have asked for our address. It's 507 Munich Drive, Bismarck ND 58504. Thank you all for your continued prayers, calls, texts, and words of encouragement. We are very thankful for the wonderful people God has put in our lives.
Everyone who was touched by Natalie's journey is invited to attend. If you'd like to attend, please do so.
We are still working on the details of the exact time, but there will be a viewing on Wednesday evening at Eastgate Funeral Home, located at 2302 East Divide Avenue in Bismarck. We will update tomorrow after we figure out the exact time.
Also, some people have asked for our address. It's 507 Munich Drive, Bismarck ND 58504. Thank you all for your continued prayers, calls, texts, and words of encouragement. We are very thankful for the wonderful people God has put in our lives.
Thursday, October 2, 2014
Natalie Jean Henke 06/07/2012 - 10/02/2014
Natalie went to be with God today. She went peacefully and without pain, surrounded by love in our arms. We are thankful for the past two days as we've been able to hold her close and have some last moments together with lots of hugs and kisses. She gave us two very special days. She even had a talk with the new baby. We have a huge empty spot in our lives and in our hearts. It is made tolerable only because we know where she now is, and it is a better place than any of us can imagine. We pray that God will continue to fill us up with his grace and the memories of Natalie's love.
She now has a perfect body, and is with her Creator in heaven. No more pain, no more discomfort, no more IV's, and no more surgeries. She can drink all the water she wants, and can run and play like she was never able to do on earth.
Natalie touched everyone she came into contact with. She exemplified God's love as she was here on earth, and we know that she will be remembered by so many. It was amazing that the hospital staff who see thousands of kids a year all remember Natalie. They all seemed to have a special place in their hearts for our little girl. We thank God that He gave Natalie to us to care for. We wish we could have kept her longer, but we will always cherish the past 28 months for as long as we live. Our memories of her are happy, and they will not diminish for as long as we live.
Thank you all for your prayers, and for the prayers we know will continue. We have been blessed beyond belief by the people that God has put in our lives. We will update again with information about the service and other things that we will be putting together to remember this precious gift from God.
God promises blessings in our lifetime. We just never know how long they will stay with us. We love you Natalie Jean. Our joy lies in knowing that we will see you again someday soon!
She now has a perfect body, and is with her Creator in heaven. No more pain, no more discomfort, no more IV's, and no more surgeries. She can drink all the water she wants, and can run and play like she was never able to do on earth.
Natalie touched everyone she came into contact with. She exemplified God's love as she was here on earth, and we know that she will be remembered by so many. It was amazing that the hospital staff who see thousands of kids a year all remember Natalie. They all seemed to have a special place in their hearts for our little girl. We thank God that He gave Natalie to us to care for. We wish we could have kept her longer, but we will always cherish the past 28 months for as long as we live. Our memories of her are happy, and they will not diminish for as long as we live.
Thank you all for your prayers, and for the prayers we know will continue. We have been blessed beyond belief by the people that God has put in our lives. We will update again with information about the service and other things that we will be putting together to remember this precious gift from God.
God promises blessings in our lifetime. We just never know how long they will stay with us. We love you Natalie Jean. Our joy lies in knowing that we will see you again someday soon!
From today
When she was 3 months old, cheered on dad
Beautiful smile
The dog really loved her, too
Beautiful smile again. She wore it a lot, even though her body was always hurting a little.
Go Vikings!!!
She loved her iPad
Wednesday, October 1, 2014
Yesterday, we got news that we'd known was possible all along, but were hoping would never come. We met with the entire team, and they are at a point where there is nothing else they can do for Natalie. Her kidneys and lungs are not going to recover to a point where they can support her body.
From the time all of this started, every decision we've made has been with Natalie's best interest at the forefront. We would both do or give anything in order to give her the best chance at a full life. Now, we have to make decisions that will help her live out her remaining days in the most peace and comfort that is possible. Please pray for comfort for Natalie, we want this more than anything.
We draw comfort knowing that she will be in the arms of her Creator in heaven. She will finally know what it feels like to be comfortable and have a healthy, heavenly, body. She can walk, run, and play and do whatever she wants to do, without the limits she had on earth. I pray they have an endless supply of water for her to drink, and someone to pull her in her wagon.
She brought joy to our lives that we could have never imagined, and to the lives of everyone she came in contact with. It seems that everyone remembers her, even though some of the hospital staff see thousands of children. They remember her piggy tales and her constant need to be on the go. She traveled miles in these hospital hall ways and every one would want to stop and talk to Natalie. She is so loved., and she loved so much!
We are spending time snuggling her and loving her. Singing Itsy Bitsy Spider and If You're Happy and You Know It. She loves those songs.
We will try to update again, right now we're pretty emotionally drained.
Thank you all for your prayers throughout these past couple years. Thank you also to those who have helped. Friends and family for being here with us, and for watching our dog and our house for us when we're gone. Everyone who has prayed, called, and texted; these words of encouragement help more than you can imagine. I would name everyone, but it would take a long time, and I'm afraid I'd forget someone. So, we'll just say thank you everyone for now.
From the time all of this started, every decision we've made has been with Natalie's best interest at the forefront. We would both do or give anything in order to give her the best chance at a full life. Now, we have to make decisions that will help her live out her remaining days in the most peace and comfort that is possible. Please pray for comfort for Natalie, we want this more than anything.
We draw comfort knowing that she will be in the arms of her Creator in heaven. She will finally know what it feels like to be comfortable and have a healthy, heavenly, body. She can walk, run, and play and do whatever she wants to do, without the limits she had on earth. I pray they have an endless supply of water for her to drink, and someone to pull her in her wagon.
She brought joy to our lives that we could have never imagined, and to the lives of everyone she came in contact with. It seems that everyone remembers her, even though some of the hospital staff see thousands of children. They remember her piggy tales and her constant need to be on the go. She traveled miles in these hospital hall ways and every one would want to stop and talk to Natalie. She is so loved., and she loved so much!
We are spending time snuggling her and loving her. Singing Itsy Bitsy Spider and If You're Happy and You Know It. She loves those songs.
We will try to update again, right now we're pretty emotionally drained.
Thank you all for your prayers throughout these past couple years. Thank you also to those who have helped. Friends and family for being here with us, and for watching our dog and our house for us when we're gone. Everyone who has prayed, called, and texted; these words of encouragement help more than you can imagine. I would name everyone, but it would take a long time, and I'm afraid I'd forget someone. So, we'll just say thank you everyone for now.
Thursday, September 25, 2014
Update from Boston
It has been a very long day and a half in Boston. Natalie got here on Tuesday, and was taken to her new temporary home in room 19, ICU at Boston Children's Hospital. She was doing well, all things considered. That same evening, out of nowhere, she spiked a fever of 107, and her blood pressure dropped. They're still not sure what the cause was.
I flew out as soon as I could, and finally got here yesterday just after lunch. Natalie was hardly recognizable with all the fluid that had built up within her body. Her fever subsided, but her body was unable to shed fluid. After several discussions with the surgical team, we decided to put Natalie on a heart & lung bypass machine called ECMO. This seems to have helped, as she is starting to look better, her blood pressure is back within normal range. The machine is helping her heart do its job, and the hope is that she can recover to the point where they can take her off the machine at some point. The time you can stay on the machine is limited, so we're praying that her body will recover so that she can wait for her heart.
There is still a lot of uncertainty, and the outlook is very uncertain. But, at least we're moving in the right direction, and we're in a MUCH better spot than we were 24 hours ago. We really appreciate all the prayers, and they're needed now more than ever. The next days will be very important, as she continues to shed fluid, and we find out if her kidneys are going to recover. We'll do our best to keep you all updated.
I flew out as soon as I could, and finally got here yesterday just after lunch. Natalie was hardly recognizable with all the fluid that had built up within her body. Her fever subsided, but her body was unable to shed fluid. After several discussions with the surgical team, we decided to put Natalie on a heart & lung bypass machine called ECMO. This seems to have helped, as she is starting to look better, her blood pressure is back within normal range. The machine is helping her heart do its job, and the hope is that she can recover to the point where they can take her off the machine at some point. The time you can stay on the machine is limited, so we're praying that her body will recover so that she can wait for her heart.
There is still a lot of uncertainty, and the outlook is very uncertain. But, at least we're moving in the right direction, and we're in a MUCH better spot than we were 24 hours ago. We really appreciate all the prayers, and they're needed now more than ever. The next days will be very important, as she continues to shed fluid, and we find out if her kidneys are going to recover. We'll do our best to keep you all updated.
Wednesday, September 17, 2014
Back to Boston....eventually
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.
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.
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.
Monday, April 7, 2014
Ruby Slippers
Close your eyes and click your heels together three times and then say there's no place like home! Little did I know that when I used to watch the Wizard of Oz, this phrase would mean what is does to me today. This stay in Boston has turned into way more than I ever would have imagined
January 25th was a long time ago and so much has happened. Brad has kept you updated as much as he can, and I am so thankful for that. So through it all, the surgery, the flu, the pneumonia, the UTI, broken broviak, the PICC line placement, the recurring fevers, fluid restrictions, not sleeping for 8 days and getting 6 teeth; Natalie has been a champ. Of course she is not smiling and playing like she used to but she is doing the best that she can. She has a great fan club here in Boston. Nurses and doctors love her despite her hesitance to let them get to close (she has a large personal bubble). She does let them listen to her 10 times a day, but she has her limits.
Definitely the game all changed when Dr. del Nido said, "if an organ came available tomorrow, I would take it." He has been the most optimistic this whole time for wanting to take every opportunity to keep her own heart. Dr. Marshall has also been a big supporter of intervention versus transplant, but we see now that is not an option for Natalie. Once we heard that news, we quickly started putting things in place to get transferred back to Minneapolis where we have more support & family, to prepare for a heart transplant. I have been here now for one month by myself and it is so hard. Finding time to sleep is like finding gold in a mountain stream. You just can't find it. There is no privacy and no boundaries for visitors some days for either Natalie or me. I never thought of myself as "private", as those of you who know me know that I tend to over-share often and inappropriately, but I need privacy too. I am just ready to come home, or at least get closer to home where we can feel more comfort.
We are now just waiting on the arrangements and for some insurance issue to resolve before we get to transfer. We hope that is soon, but we are realistic in knowing that sometimes these things take time. Each day right now feels like a week when you want something so bad. It's hard to stay optimistic but we are doing our best. When we get to Minneapolis we will be so happy and actually feel like we are moving forward for Natalie. We will at least have a chance to see friends and family and we look forward to having visitors from home. We are most excited to see Brad more often. We have only been able to see him two days in the last month and that is just not enough.
Sorry that there isn't a lot of information to share, but we wanted to share a little bit today when I had the time and energy.
A few prayer requests. We pray that Natalie's health stays well as we wait for transplant and transport. We pray that news of transfer and insurance coverage resolves quickly, so we can get moving and get sleep for Natalie and for myself. We also pray that Brad is able to rest knowing that we are well so far away. God, please lighten our load and calm our fears. Keep us safe and focused on the goal. Keep showing us your love and grace. Sometimes we need the reminders that you are there and keeping everything moving towards your plan for our lives.
We look forward to seeing everyone, and thank you for all the support through text and email. We can't wait to share better news with you all.
January 25th was a long time ago and so much has happened. Brad has kept you updated as much as he can, and I am so thankful for that. So through it all, the surgery, the flu, the pneumonia, the UTI, broken broviak, the PICC line placement, the recurring fevers, fluid restrictions, not sleeping for 8 days and getting 6 teeth; Natalie has been a champ. Of course she is not smiling and playing like she used to but she is doing the best that she can. She has a great fan club here in Boston. Nurses and doctors love her despite her hesitance to let them get to close (she has a large personal bubble). She does let them listen to her 10 times a day, but she has her limits.
Definitely the game all changed when Dr. del Nido said, "if an organ came available tomorrow, I would take it." He has been the most optimistic this whole time for wanting to take every opportunity to keep her own heart. Dr. Marshall has also been a big supporter of intervention versus transplant, but we see now that is not an option for Natalie. Once we heard that news, we quickly started putting things in place to get transferred back to Minneapolis where we have more support & family, to prepare for a heart transplant. I have been here now for one month by myself and it is so hard. Finding time to sleep is like finding gold in a mountain stream. You just can't find it. There is no privacy and no boundaries for visitors some days for either Natalie or me. I never thought of myself as "private", as those of you who know me know that I tend to over-share often and inappropriately, but I need privacy too. I am just ready to come home, or at least get closer to home where we can feel more comfort.
We are now just waiting on the arrangements and for some insurance issue to resolve before we get to transfer. We hope that is soon, but we are realistic in knowing that sometimes these things take time. Each day right now feels like a week when you want something so bad. It's hard to stay optimistic but we are doing our best. When we get to Minneapolis we will be so happy and actually feel like we are moving forward for Natalie. We will at least have a chance to see friends and family and we look forward to having visitors from home. We are most excited to see Brad more often. We have only been able to see him two days in the last month and that is just not enough.
Sorry that there isn't a lot of information to share, but we wanted to share a little bit today when I had the time and energy.
A few prayer requests. We pray that Natalie's health stays well as we wait for transplant and transport. We pray that news of transfer and insurance coverage resolves quickly, so we can get moving and get sleep for Natalie and for myself. We also pray that Brad is able to rest knowing that we are well so far away. God, please lighten our load and calm our fears. Keep us safe and focused on the goal. Keep showing us your love and grace. Sometimes we need the reminders that you are there and keeping everything moving towards your plan for our lives.
We look forward to seeing everyone, and thank you for all the support through text and email. We can't wait to share better news with you all.
Monday, March 31, 2014
Latest update, March 31
Hi everyone,
Sorry it's been so long since we've updated, but we didn't have many answers to share yet.
Over the past couple months, Natalie has recovered from her surgery, tried to wean off the medications, and battled the flu and pneumonia. There have been some successes, but also some setbacks.
Natalie was in a tough spot in January. She was in a position where her current heart anatomy wasn't going to be able to support her. Unfortunately, her lung pressures were such that she wasn't a candidate for transplant, either. She was at such high risk that they would not have been able to perform the surgery. Basically, we were without options.
Dr. delNido looked at the case, and came up with a surgery that he could perform. The surgery that he came up with and performed in January was a transitional surgery to get Natalie to a better spot. They were hopeful that her heart would recover and be able to function properly, and also that her lung pressures would go down. Over the past month, it has become apparent that her heart is not going to be able to support her. Fortunately, the surgery did reduce the lung pressures to where she is eligible for transplant and would be considered "low risk."
So, it looks like we're going to list Natalie for a heart transplant. This is obviously not the scenario we were hoping and praying for, but it's better than what we were looking at in January. We will be able to have the transplant done in Minneapolis, so we'll be closer to home. For now, they'll be working on getting Natalie and Heidi out of Boston and over to Minneapolis.
Natalie hasn't been sleeping well (or at all) since weaning off the Adavan, and she spiked a fever a couple of times. So, they transferred her back to ICU on Sunday. She just started sleeping today, so we think she's finally over the wean.
The goal for right now is to get Natalie in a better spot so they can transfer her to Minneapolis. We think that if they can get her medications figured out, then hopefully they can transfer to Minneapolis by the end of this week or possibly next week.
Going forward, once they're in Minneapolis, they will do some testing to make sure she's ready for transplant. They'll also work on getting her stabilized enough to be able to come back home while we wait for a heart to come available. Then, we'll hopefully all be home together.
So, we wish we had better news to share, but this is where we are right now. Thank you all again for all the prayers and support throughout all of this, we are very thankful to have the family and friends we have. Heidi said to make sure to mention thank you for all the texts and messages she gets, it really helps a lot as they're living away from home.
Heidi will give a more detailed update sometime later in the week. Thanks again, and God bless.
Sorry it's been so long since we've updated, but we didn't have many answers to share yet.
Over the past couple months, Natalie has recovered from her surgery, tried to wean off the medications, and battled the flu and pneumonia. There have been some successes, but also some setbacks.
Natalie was in a tough spot in January. She was in a position where her current heart anatomy wasn't going to be able to support her. Unfortunately, her lung pressures were such that she wasn't a candidate for transplant, either. She was at such high risk that they would not have been able to perform the surgery. Basically, we were without options.
Dr. delNido looked at the case, and came up with a surgery that he could perform. The surgery that he came up with and performed in January was a transitional surgery to get Natalie to a better spot. They were hopeful that her heart would recover and be able to function properly, and also that her lung pressures would go down. Over the past month, it has become apparent that her heart is not going to be able to support her. Fortunately, the surgery did reduce the lung pressures to where she is eligible for transplant and would be considered "low risk."
So, it looks like we're going to list Natalie for a heart transplant. This is obviously not the scenario we were hoping and praying for, but it's better than what we were looking at in January. We will be able to have the transplant done in Minneapolis, so we'll be closer to home. For now, they'll be working on getting Natalie and Heidi out of Boston and over to Minneapolis.
Natalie hasn't been sleeping well (or at all) since weaning off the Adavan, and she spiked a fever a couple of times. So, they transferred her back to ICU on Sunday. She just started sleeping today, so we think she's finally over the wean.
The goal for right now is to get Natalie in a better spot so they can transfer her to Minneapolis. We think that if they can get her medications figured out, then hopefully they can transfer to Minneapolis by the end of this week or possibly next week.
Going forward, once they're in Minneapolis, they will do some testing to make sure she's ready for transplant. They'll also work on getting her stabilized enough to be able to come back home while we wait for a heart to come available. Then, we'll hopefully all be home together.
So, we wish we had better news to share, but this is where we are right now. Thank you all again for all the prayers and support throughout all of this, we are very thankful to have the family and friends we have. Heidi said to make sure to mention thank you for all the texts and messages she gets, it really helps a lot as they're living away from home.
Heidi will give a more detailed update sometime later in the week. Thanks again, and God bless.
Thursday, February 27, 2014
Overdue update
Hi everyone,
Sorry we haven't updated for a while, life has been a little crazy. Heidi has done quite a bit on Facebook, but we thought we'd update here as well.
As you probably know, Natalie was recovering from her open heart procedure and she wound up catching the flu (H1N1). This set her recovery back quite a bit. Just when it seemed she was getting better, she had a really bad day last Wednesday and they found out she had contracted pneumonia. So, it took her quite a bit of time to recover enough from that so they could do the cath procedure. They finally were able to do that yesterday.
The cath showed that the numbers were where they expected. Dr. delNido is deciding whether or not he needs to tighten the bands on her pulmonary arteries a little more or not. If so, he would have to open the chest cavity again. It would be a minor procedure compared to the others she has been through, and it shouldn't take long for Natalie to recover. Or, he may decide that he doesn't need to do anything; we should know more later today.
Natalie is doing well. Her numbers improve every day, and we're hoping that they'll allow her to wake up slowly over the next day or two. Maybe they'll be able to extubate by this weekend. We pray that she can recover from all she's been through and finally begin to get well and return to her normal self. It seems like an eternity since we've had Natalie with us.
I'm back in Bismarck this week working. Heidi's parents have been out there, which has helped immensely. Heidi's dad left this morning to go back home, and her mom will be there until next week. I'll fly out next Friday to spend the weekend, and hopefully, a discharge date will be close by then.
Thank all of you again for all the prayers and support as Natalie goes through all of this, we really appreciate it. We will try to update more often, and we hope to all be together at home again soon.
Sorry we haven't updated for a while, life has been a little crazy. Heidi has done quite a bit on Facebook, but we thought we'd update here as well.
As you probably know, Natalie was recovering from her open heart procedure and she wound up catching the flu (H1N1). This set her recovery back quite a bit. Just when it seemed she was getting better, she had a really bad day last Wednesday and they found out she had contracted pneumonia. So, it took her quite a bit of time to recover enough from that so they could do the cath procedure. They finally were able to do that yesterday.
The cath showed that the numbers were where they expected. Dr. delNido is deciding whether or not he needs to tighten the bands on her pulmonary arteries a little more or not. If so, he would have to open the chest cavity again. It would be a minor procedure compared to the others she has been through, and it shouldn't take long for Natalie to recover. Or, he may decide that he doesn't need to do anything; we should know more later today.
Natalie is doing well. Her numbers improve every day, and we're hoping that they'll allow her to wake up slowly over the next day or two. Maybe they'll be able to extubate by this weekend. We pray that she can recover from all she's been through and finally begin to get well and return to her normal self. It seems like an eternity since we've had Natalie with us.
I'm back in Bismarck this week working. Heidi's parents have been out there, which has helped immensely. Heidi's dad left this morning to go back home, and her mom will be there until next week. I'll fly out next Friday to spend the weekend, and hopefully, a discharge date will be close by then.
Thank all of you again for all the prayers and support as Natalie goes through all of this, we really appreciate it. We will try to update more often, and we hope to all be together at home again soon.
Monday, February 10, 2014
Slowly moving along
Hi everyone,
It has been a while since we've updated, and Natalie has made a lot of progress. She came off of the ventilator on Wednesday evening (thankfully, she hated that tube in her throat), and was moved out of the ICU today. She's now in recovery and being weaned off of the different sedatives and pain drugs they have her on.
It is a trying time for us. I had to fly back yesterday, and it is really hard to be away from the two gals. But, I also have to work, so we made the decision to have me fly back. Fortunately, Heidi's mom, Barb, was able to fly out to be with Natalie and Heidi while I'm gone. We're very grateful that she was willing to do that, I'll have to quit telling all those mother-in-law jokes. I'll fly back out on Friday (like there wasn't enough reason to look forward to the weekend), and hopefully by the time I fly back home next Monday, the gals will be close to coming home.
There really isn't a whole lot else to update. Natalie gets stronger every day, and we continue to be amazed at how strong she's been through all of this. We're thankful for the continued prayers, and hopefully we'll all be home together soon.
It has been a while since we've updated, and Natalie has made a lot of progress. She came off of the ventilator on Wednesday evening (thankfully, she hated that tube in her throat), and was moved out of the ICU today. She's now in recovery and being weaned off of the different sedatives and pain drugs they have her on.
It is a trying time for us. I had to fly back yesterday, and it is really hard to be away from the two gals. But, I also have to work, so we made the decision to have me fly back. Fortunately, Heidi's mom, Barb, was able to fly out to be with Natalie and Heidi while I'm gone. We're very grateful that she was willing to do that, I'll have to quit telling all those mother-in-law jokes. I'll fly back out on Friday (like there wasn't enough reason to look forward to the weekend), and hopefully by the time I fly back home next Monday, the gals will be close to coming home.
There really isn't a whole lot else to update. Natalie gets stronger every day, and we continue to be amazed at how strong she's been through all of this. We're thankful for the continued prayers, and hopefully we'll all be home together soon.
Monday, February 3, 2014
Waiting, waiting and more waiting!!!
Hello Everyone,
It's been a long time since I have posted and I thank Brad for his dedication to posting for you all. It's sometimes so hard to focus my energy and attention to write about everything that is going on. Natalie is doing very well, considering that the changes they made during this surgery changed how her blood flows and how oxygen is delivered to her body. Her blood, red and blue, now mix as needed. It's very noticeable when she is upset or de-stats how her lips and eyes now show the blue tint that is common with heart babies. The nurses have been working very hard to keep her calm and allow her time to heal. She hates that breathing tube and you can tell how frustrated she gets with it. It's hard to watch her struggle to settle down, but we hope that it's only for a little bit longer. We all hate the breathing tube.
Today they were able to take the nitric oxide away and she was able to tolerate it. The nitric helps to keep the pulmonary veins open and the oxygen flowing. We were able to transition that all to the sildenafil that she was on at home. That was a huge step. We didn't realize how big until they told us that if she wasn't able to come off it successfully they may have had to go back in for another surgery to try and correct it. We are so relieved that she did well.
Tonight we continue to wait for her to get more fluid off. Once she gets the fluid off her lungs, she has better chance of being successfully extubated. We are not sure when that will happen, but that is one step closer. She is starting to look like herself again.
We are waiting to play catch and play on the ipad together. She has become quite the comedian, hiding the ball from Brad under the bed and she loves to play catch.
We have come a long way since last Monday night. That might have been one of the hardest and longest nights of our lives. I can't remember the last time that I cried that hard. We felt hopeless and so sad for our little girl. We were afraid that we were headed home to list her for transplant or worse, just home with out options. We were so relieved after meeting with Dr. del Nido. We were so happy that there was something that he could do. Amazing, the working hands of God in human form. He is amazing and he keeps very close tabs on Natalie. We know that she is not done with her heart journey and we are hopeful that we are now headed in the right direction.
Here are a few pictures from the week. We thank you all for your continued prayer for both Natalie and us. Your encouraging words and support help us get through it all. God has given us peace and rest. We couldn't wake each day with hope for Natalie without Gods unfailing Grace! Praise the Lord!
It's been a long time since I have posted and I thank Brad for his dedication to posting for you all. It's sometimes so hard to focus my energy and attention to write about everything that is going on. Natalie is doing very well, considering that the changes they made during this surgery changed how her blood flows and how oxygen is delivered to her body. Her blood, red and blue, now mix as needed. It's very noticeable when she is upset or de-stats how her lips and eyes now show the blue tint that is common with heart babies. The nurses have been working very hard to keep her calm and allow her time to heal. She hates that breathing tube and you can tell how frustrated she gets with it. It's hard to watch her struggle to settle down, but we hope that it's only for a little bit longer. We all hate the breathing tube.
Today they were able to take the nitric oxide away and she was able to tolerate it. The nitric helps to keep the pulmonary veins open and the oxygen flowing. We were able to transition that all to the sildenafil that she was on at home. That was a huge step. We didn't realize how big until they told us that if she wasn't able to come off it successfully they may have had to go back in for another surgery to try and correct it. We are so relieved that she did well.
Tonight we continue to wait for her to get more fluid off. Once she gets the fluid off her lungs, she has better chance of being successfully extubated. We are not sure when that will happen, but that is one step closer. She is starting to look like herself again.
We are waiting to play catch and play on the ipad together. She has become quite the comedian, hiding the ball from Brad under the bed and she loves to play catch.
We have come a long way since last Monday night. That might have been one of the hardest and longest nights of our lives. I can't remember the last time that I cried that hard. We felt hopeless and so sad for our little girl. We were afraid that we were headed home to list her for transplant or worse, just home with out options. We were so relieved after meeting with Dr. del Nido. We were so happy that there was something that he could do. Amazing, the working hands of God in human form. He is amazing and he keeps very close tabs on Natalie. We know that she is not done with her heart journey and we are hopeful that we are now headed in the right direction.
Here are a few pictures from the week. We thank you all for your continued prayer for both Natalie and us. Your encouraging words and support help us get through it all. God has given us peace and rest. We couldn't wake each day with hope for Natalie without Gods unfailing Grace! Praise the Lord!
February 3, 2014---Sleeping Beauty
Day One--Post Op
Natalie's Smiles
Sunday, February 2, 2014
Sunday update: very little change
Hello everyone,
Well, like the title suggests, there isn't a whole lot of new news to share. They're keeping Natalie asleep, and that probably won't change for another day or two.
They let her wake a few times over the last few days, and she was a little too feisty. Her oxygen stats dropped, so they had to let her go back to sleep. It's not unexpected, considering the amount of fluid she still has in her body. She looks much better today, so hopefully they'll have better luck waking her tomorrow.
We're just hanging out here with her, and getting ready to enjoy the Super Bowl on this massive 10 inch hospital TV screen (Go Broncos!). We did get out a little today to see the USS Constitution (Old Ironsides), the site of the Battle of Bunker Hill, and some of the older areas of Boston.
Hopefully, tomorrow will bring more news and some more exciting updates. Thanks again for the continued thoughts and prayers, we'll update again soon.
Well, like the title suggests, there isn't a whole lot of new news to share. They're keeping Natalie asleep, and that probably won't change for another day or two.
They let her wake a few times over the last few days, and she was a little too feisty. Her oxygen stats dropped, so they had to let her go back to sleep. It's not unexpected, considering the amount of fluid she still has in her body. She looks much better today, so hopefully they'll have better luck waking her tomorrow.
We're just hanging out here with her, and getting ready to enjoy the Super Bowl on this massive 10 inch hospital TV screen (Go Broncos!). We did get out a little today to see the USS Constitution (Old Ironsides), the site of the Battle of Bunker Hill, and some of the older areas of Boston.
Hopefully, tomorrow will bring more news and some more exciting updates. Thanks again for the continued thoughts and prayers, we'll update again soon.
Wednesday, January 29, 2014
Out of surgery
This will be fairly short, but we'll give a more detailed update later this evening.
Natalie has made it out of surgery, and she did really well. They made the adjustments to the pulmonary artery & aorta, tightened the PA bands, and took down the wall between the left & right atrium. They are going to keep the breastbone separated for now, just in case they need to loosen the PA bands. It will depend on how her oxygen saturation looks in the next couple of days. She is recovering now, and we'll be able to see her in an hour or so.
She is going to be taken to the ICU, and will remain there for several days. She will be kept asleep while her body adjusts, but we will at least be able to see her and sit in the room with her. I'm guessing she will be kept in a coma for at least four days.
Like I said, this is pretty short. We'll update later when we get up in the room with her. I'll have Heidi update then, she's a little more wordy than I am. Thank you everyone who has been praying and thinking about Natalie and us. We're very thankful.
Tuesday, January 28, 2014
The plan going forward
Hi everyone,
It's been an extremely long day, but we're finally back to the room. The meeting with the surgeon went well, and it looks like we have a plan for Natalie.
As we said yesterday, her pressures were up and her current anatomy isn't going to work. They have a surgery date scheduled tomorrow, and we'll take Natalie over at 7:00 am. Dr. delNido will be doing an open-heart procedure to get the atrial pressures and her lung pressures to go down. Right now, some of the pressures are so high that she isn't even a candidate for a transplant or any other procedure. They will join the pulmonary artery and aorta in order to shunt blood and lessen the lung pressures. They will also put a band on the pulmonary artery. They will keep her in a coma for several days after the surgery in order to keep all the pressures down as her body adjusts to this new anatomy.
This will be done in order to get her to a place where we will have some options. The transplant is still an option, but obviously that would be done as a last resort. We will monitor for a few months after the surgery to see how she is adjusting, and how her heart is doing. If all is well, there is a good chance that Dr. delNido could do another procedure to make the right side of her heart do a majority of the work while keeping her left side operating and helping the right side. This would be optimal since she'd be able to keep her heart and would have a much better quality of life than she would if she has a transplant.
This was just a quick overview of what they'll be doing. Heidi and I will update as we learn more, and to let everyone know how each step along the way is going. Thank you again for the prayers, we appreciate them very much.
It's been an extremely long day, but we're finally back to the room. The meeting with the surgeon went well, and it looks like we have a plan for Natalie.
As we said yesterday, her pressures were up and her current anatomy isn't going to work. They have a surgery date scheduled tomorrow, and we'll take Natalie over at 7:00 am. Dr. delNido will be doing an open-heart procedure to get the atrial pressures and her lung pressures to go down. Right now, some of the pressures are so high that she isn't even a candidate for a transplant or any other procedure. They will join the pulmonary artery and aorta in order to shunt blood and lessen the lung pressures. They will also put a band on the pulmonary artery. They will keep her in a coma for several days after the surgery in order to keep all the pressures down as her body adjusts to this new anatomy.
This will be done in order to get her to a place where we will have some options. The transplant is still an option, but obviously that would be done as a last resort. We will monitor for a few months after the surgery to see how she is adjusting, and how her heart is doing. If all is well, there is a good chance that Dr. delNido could do another procedure to make the right side of her heart do a majority of the work while keeping her left side operating and helping the right side. This would be optimal since she'd be able to keep her heart and would have a much better quality of life than she would if she has a transplant.
This was just a quick overview of what they'll be doing. Heidi and I will update as we learn more, and to let everyone know how each step along the way is going. Thank you again for the prayers, we appreciate them very much.
Monday, January 27, 2014
Mini update until tomorrow
Hi everyone,
The good news is that Natalie made it through her catheter procedure today and is doing well. She's discharged from the hospital and we're all back at the room trying to get some rest. She REALLY needs some sleep, but other than that, she is doing fine.
The bad news is that her pressures haven't gotten better, in fact they've gotten worse. This means that her current heart configuration will not work. We are meeting with her surgeon, Dr. delNido, tomorrow. We will discuss whether he thinks he can intervene surgically in order to repair her heart. If he doesn't think he can do anything further, then we will have to come home and list her for a heart transplant.
We really won't know much until after we meet with him, so we'll update with more detail tomorrow evening. We just wanted to give a quick update, as we know many of our friends and family are worried and are following the situation. We're very thankful for that, by the way.
We appreciate the continued prayers, we really do appreciate it. If you could, pray for Natalie, but also pray for wisdom for us so that we may make the correct decision for Natalie. Again, we'll update tomorrow when we know what the final decision will be.
The good news is that Natalie made it through her catheter procedure today and is doing well. She's discharged from the hospital and we're all back at the room trying to get some rest. She REALLY needs some sleep, but other than that, she is doing fine.
The bad news is that her pressures haven't gotten better, in fact they've gotten worse. This means that her current heart configuration will not work. We are meeting with her surgeon, Dr. delNido, tomorrow. We will discuss whether he thinks he can intervene surgically in order to repair her heart. If he doesn't think he can do anything further, then we will have to come home and list her for a heart transplant.
We really won't know much until after we meet with him, so we'll update with more detail tomorrow evening. We just wanted to give a quick update, as we know many of our friends and family are worried and are following the situation. We're very thankful for that, by the way.
We appreciate the continued prayers, we really do appreciate it. If you could, pray for Natalie, but also pray for wisdom for us so that we may make the correct decision for Natalie. Again, we'll update tomorrow when we know what the final decision will be.
Thursday, January 16, 2014
Another chapter, how many is this now?
Hello everyone. We thought we'd get an update out here for those who want to know a little more about what's going on with Natalie. We update Facebook, but there's only so much you can do on there.
Heidi and Natalie are on their way back from Minneapolis after a 10 day adventure. This all started on Saturday Jan. 4, when Natalie started vomiting and couldn't keep anything down. We tried what we could, but nothing improved by Sunday. Our cardiologist told us to bring her in to the hospital, so we did that day. She stayed in the hospital in Bismarck until Thursday, and the doctor sent her via air ambulance to Minneapolis where they had more resources to get her better. They adjusted feeds, and tried several different things to get her vomiting under control, which they finally accomplished. The belief is that she probably caught some kind of virus, which was exacerbated by what she already has going on with her heart.
So, at long last, they get to come home, thankfully. It's been a long week without them here as I drove to Minneapolis over the weekend, but had to be back for work this week.
Through all of this, it was decided by the cardiologists & surgeons that it would be better for us to go to Boston sooner, rather than waiting for our existing appointment at the end of February. We're flying to Boston on January 25, and they'll be doing another cath (catheter procedure where they go through the femoral artery in Natalie's leg to go into the heart) on January 27th. What they find in the cath will dictate what happens from there. Basically, there are three possible scenarios. 1) they find that her pressures have improved and she's doing well, and they don't need to adjust anything. Then we could come home. 2) they feel her pressures are better, but they feel that they need to intervene surgically to further improve her heart functioning. 3) her pressures are worse or haven't improved, and we need to list Natalie for a heart transplant.
Obviously, we're praying for scenario 1, and we definitely don't want it to be scenario 3. If it is scenario 2, they already have a surgery scheduled for Wednesday, January 29th. We really don't know a lot until they perform the cath on January 27th. We will update here as the date gets closer, and when we have more information to pass along. Right now, it's more waiting and unknowns. We pray that Natalie doesn't need a heart transplant, but it's still a possibility.
We want to thank everyone for the continued prayers and well wishes, we're blessed to have the friends and family we have in our lives.
Heidi and Natalie are on their way back from Minneapolis after a 10 day adventure. This all started on Saturday Jan. 4, when Natalie started vomiting and couldn't keep anything down. We tried what we could, but nothing improved by Sunday. Our cardiologist told us to bring her in to the hospital, so we did that day. She stayed in the hospital in Bismarck until Thursday, and the doctor sent her via air ambulance to Minneapolis where they had more resources to get her better. They adjusted feeds, and tried several different things to get her vomiting under control, which they finally accomplished. The belief is that she probably caught some kind of virus, which was exacerbated by what she already has going on with her heart.
So, at long last, they get to come home, thankfully. It's been a long week without them here as I drove to Minneapolis over the weekend, but had to be back for work this week.
Through all of this, it was decided by the cardiologists & surgeons that it would be better for us to go to Boston sooner, rather than waiting for our existing appointment at the end of February. We're flying to Boston on January 25, and they'll be doing another cath (catheter procedure where they go through the femoral artery in Natalie's leg to go into the heart) on January 27th. What they find in the cath will dictate what happens from there. Basically, there are three possible scenarios. 1) they find that her pressures have improved and she's doing well, and they don't need to adjust anything. Then we could come home. 2) they feel her pressures are better, but they feel that they need to intervene surgically to further improve her heart functioning. 3) her pressures are worse or haven't improved, and we need to list Natalie for a heart transplant.
Obviously, we're praying for scenario 1, and we definitely don't want it to be scenario 3. If it is scenario 2, they already have a surgery scheduled for Wednesday, January 29th. We really don't know a lot until they perform the cath on January 27th. We will update here as the date gets closer, and when we have more information to pass along. Right now, it's more waiting and unknowns. We pray that Natalie doesn't need a heart transplant, but it's still a possibility.
We want to thank everyone for the continued prayers and well wishes, we're blessed to have the friends and family we have in our lives.
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