Hi everyone,
Today was a really great day for us. They took Natalie off of the strongest diuretic (Bumex), and it has worked wonders. She is eating much better, actually meeting the goals they set for her, and is much happier. She actually laughed today, which is something she hasn't done since before we went to Boston in December.
Now, it's just a matter of monitoring her and seeing if her heart pressures will stay down without the Bumex. When we tried this before in Bismarck, her pressures went up and they had to put her back on the drug. Then, the drug caused her appetite to go away, and she declined physically and mentally.
Here, they have more options available, and are able to watch more closely. They'll try different medications if her pressures rise, and hopefully we can get something to work. She is a much happier and hungrier baby without that drug, so we are praying for this to work. This could even eliminate the need for the feeding tube. Time will tell.
That's about all we have for today, it will be a slow day or two as we monitor Natalie. I have to head back to Bismarck tomorrow to go to work on Monday. Heidi and Natalie will hang out here in MN, and I'll look forward to rejoining them on Friday.
Thank all of you for the prayers, please keep them coming.
Saturday, March 16, 2013
Friday, March 15, 2013
Friday update
Hi everyone,
Well, we had a pretty long, stressful day today. Natalie had her catheter surgery, and we got the results back. Her pressures are quite high, and her ventricle hasn't grown. However, this could very well be because she hasn't grown either. She has actually lost weight since we got home from Boston in January.
Initially, the surgeon's thoughts were that we should think about abandoning the heart repair. This would mean that we either reverse all the work that's been done on her heart and go with the single ventricle pathway, or we move to a heart transplant. Yeah, we were devastated. The single ventricle pathway carries with it a 70% chance that Natalie will survive to adulthood, and she would probably need a transplant in 10-20 years. We spent about two hours thinking that this was what the future held for Natalie. It was not a fun two hours for Heidi and I.
Then, we spoke with the attending cardiologist, and she had a much better outlook. They had met as a team, and they were in agreement that it's way too early to give up on her heart as it is. She is so very close to having a fully functioning heart, and they want to give it a chance to develop. They are adjusting medications so that she can eat better. This will cause growth both in her, and in her heart. If she isn't able to increase her food intake over the next several days, then they will proceed with giving her a feeding tube. That way, we can be sure that she will get enough food in order to help her grow and develop.
We pray that this works, and that she can have a bright future with a normal heart. Only time will tell. We'll know a lot more in another 2-4 months, so until then, we'll make sure that she eats plenty.
We want to thank everyone for the prayers and support as we've gone through this latest ordeal. We'll be sure to keep you updated as we move forward.
Well, we had a pretty long, stressful day today. Natalie had her catheter surgery, and we got the results back. Her pressures are quite high, and her ventricle hasn't grown. However, this could very well be because she hasn't grown either. She has actually lost weight since we got home from Boston in January.
Initially, the surgeon's thoughts were that we should think about abandoning the heart repair. This would mean that we either reverse all the work that's been done on her heart and go with the single ventricle pathway, or we move to a heart transplant. Yeah, we were devastated. The single ventricle pathway carries with it a 70% chance that Natalie will survive to adulthood, and she would probably need a transplant in 10-20 years. We spent about two hours thinking that this was what the future held for Natalie. It was not a fun two hours for Heidi and I.
Then, we spoke with the attending cardiologist, and she had a much better outlook. They had met as a team, and they were in agreement that it's way too early to give up on her heart as it is. She is so very close to having a fully functioning heart, and they want to give it a chance to develop. They are adjusting medications so that she can eat better. This will cause growth both in her, and in her heart. If she isn't able to increase her food intake over the next several days, then they will proceed with giving her a feeding tube. That way, we can be sure that she will get enough food in order to help her grow and develop.
We pray that this works, and that she can have a bright future with a normal heart. Only time will tell. We'll know a lot more in another 2-4 months, so until then, we'll make sure that she eats plenty.
We want to thank everyone for the prayers and support as we've gone through this latest ordeal. We'll be sure to keep you updated as we move forward.
Thursday, March 14, 2013
Another trip
Almost 3 months to the date we are back in the hospital again, and always on these surprise adventures. We have enjoyed being home with nothing real exciting to post about. Brad has been back at work and I have been back in the saddle as well. Life was pretty quiet except our weekly visits for Natalie to have her echos and check ups.
Over the past month we have been closely monitoring Natalie's weight gain or lack thereof. Her heart function appeared to be stable, but she has not been able to put on any weight. When we left for Boston, Natalie weighed about 14 and a half pounds. A very happy and chubby baby. When we left Boston on January 14th, she weighed about 12 lbs. 8 ounces. We expected the weight loss following the surgery and anticipated that she would gain it back once we were home and back in our normal routine. Tuesday Natalie weighed in at 12 lbs. 1 ounce. She had lost considerable amount of weight over the week and has not been eating well. We know that the diuretics that she is on reduces her appetite, but at this point we are not able to reduce the diuretics and improve her eating.
So Tuesday upon seeing the scale read 5.49 Kilos, Dr. Fernandez sent us immediately, to Minneapolis. We had out appointment at 1pm, and by 5:30 we were on the road. We arrived at Amplatz at 1:30 am and began the process of getting Natalie a feeding tube placed to help with her feedings. It's not that Natalie doesn't eat, she just doesn't take in the volume to get the calories that she needs. She only takes in about 15 ounces a day and should be taking in about 32, plus her baby foods.
Once we arrived here, the doctors really wanted to more closely examine the heart to see if the pressures and heart functions are good. We know that the diuretics are causing some of the eating issues, but we can't reduce them because of the fluid build up if she doesn't have them. So, they will be doing a heart cath tomorrow to take a good look at the pressures and function of the heart before we do anything with the feeding tube.
At this point, we are starting here to see if we can tweak medications and have better squeezing from her stiff left ventricle. If we get better squeezing with an additional medication we hope that we can reduce her diuretics and increase her appetite. This process will take the better part of a week to evaluate. We have decided to continue with the feeding tube to allow us to give her additional nutrition, but hope that it is not as critical to her weight gain if her appetite returns.
If this process doesn't improve her overall health, then we go onto the next step which would be more severe interventions that we will explain if needed. Right now we just need prayer and the help of God to heal her heart and make it function well.
We will update you all with the cath results tomorrow. Thank you for the love and support; and of course the prayers for Natalie, Brad and I.
Over the past month we have been closely monitoring Natalie's weight gain or lack thereof. Her heart function appeared to be stable, but she has not been able to put on any weight. When we left for Boston, Natalie weighed about 14 and a half pounds. A very happy and chubby baby. When we left Boston on January 14th, she weighed about 12 lbs. 8 ounces. We expected the weight loss following the surgery and anticipated that she would gain it back once we were home and back in our normal routine. Tuesday Natalie weighed in at 12 lbs. 1 ounce. She had lost considerable amount of weight over the week and has not been eating well. We know that the diuretics that she is on reduces her appetite, but at this point we are not able to reduce the diuretics and improve her eating.
So Tuesday upon seeing the scale read 5.49 Kilos, Dr. Fernandez sent us immediately, to Minneapolis. We had out appointment at 1pm, and by 5:30 we were on the road. We arrived at Amplatz at 1:30 am and began the process of getting Natalie a feeding tube placed to help with her feedings. It's not that Natalie doesn't eat, she just doesn't take in the volume to get the calories that she needs. She only takes in about 15 ounces a day and should be taking in about 32, plus her baby foods.
Once we arrived here, the doctors really wanted to more closely examine the heart to see if the pressures and heart functions are good. We know that the diuretics are causing some of the eating issues, but we can't reduce them because of the fluid build up if she doesn't have them. So, they will be doing a heart cath tomorrow to take a good look at the pressures and function of the heart before we do anything with the feeding tube.
At this point, we are starting here to see if we can tweak medications and have better squeezing from her stiff left ventricle. If we get better squeezing with an additional medication we hope that we can reduce her diuretics and increase her appetite. This process will take the better part of a week to evaluate. We have decided to continue with the feeding tube to allow us to give her additional nutrition, but hope that it is not as critical to her weight gain if her appetite returns.
If this process doesn't improve her overall health, then we go onto the next step which would be more severe interventions that we will explain if needed. Right now we just need prayer and the help of God to heal her heart and make it function well.
We will update you all with the cath results tomorrow. Thank you for the love and support; and of course the prayers for Natalie, Brad and I.
Saturday, January 19, 2013
Home and Back in the Saddle Again!
Well, after a long 33days in Boston, we arrived at home on Monday night. We were finally discharged conditionally on Sunday to a hotel nearby the hospital, and Monday at 1pm we were given the final okay to go home. By 2pm we had booked our flight and checked out of the hotel. We were very excited to get home. Monday night we slept in our own beds and Boston felt a million miles away.
While in Boston we celebrated Christmas, New Years, Brads 39th birthday and Natalie's 7 month birthday. Most importantly, we celebrate Gods miracle gift. Natalie's heart is now functioning as yours and mine would. She was able to have a full 2 ventricle repair. She is doing very well and her heart seems to be adapting to its new circulation, and her left side is learning to squeeze. We are still waiting to see our little girl return to her old self. It's a long road to get her off the methadone, but we are getting closer each day.
We still laugh about the NP that was "very concerned about you going to such a rural area and concerned about Natalie's after care". That was the one of the main reasons why we unable to return home on Sunday night. The news that we were not going to be discharged on Sunday about sent me over the edge. I just cried and asked her to please let us go home. After weeks of not even thinking about home, I was ready. Natalie was past ready. We spent the last 7 days either carrying Natalie around the 8th floor or pushing her for endless hours in the stroller. Every time we would enter the room and she would see her bed she would cry. She wanted to be home too. And of course Brad was beyond ready to be home and see the animals and sleep in our own bed.
Endless games of scrabble, strolling Natalie until the wee hours of the morning and the stress of having another surgery this spring are now long gone. Okay, you are right, we had to bring the scrabble board home with us and we have even played a game since being home. We are so thankful for the miracle the God gave us and for all the wonderful people that we met while we were in Boston. So many people have touched our lives both directly and indirectly and God has been calling us to do more and be better stewards of the gifts that he has given us. We are excited for the year to come and we are starting a new year with a new prospective.
Thank you so much for all the support throughout this experience. Whether a gentle smile on the 8th floor from others who truly understand our fears or those who reached out to us and supported us in prayers, cards, snacks, and financial ways we could not have gone through this with out you ALL. Each and every one of you helped us to cope and heal. Thank you and we hope that the rest our blog is dedicated to following our baby girl and her life. Her 1st birthday will be quite the celebration.
Here are a few pictures for you all to enjoy.
Brads Birthday Dinner at Lineage! Thanks for helping us find this little treasure Dorothy!
Love,
Brad, Heidi & Natalie Henke
While in Boston we celebrated Christmas, New Years, Brads 39th birthday and Natalie's 7 month birthday. Most importantly, we celebrate Gods miracle gift. Natalie's heart is now functioning as yours and mine would. She was able to have a full 2 ventricle repair. She is doing very well and her heart seems to be adapting to its new circulation, and her left side is learning to squeeze. We are still waiting to see our little girl return to her old self. It's a long road to get her off the methadone, but we are getting closer each day.
We still laugh about the NP that was "very concerned about you going to such a rural area and concerned about Natalie's after care". That was the one of the main reasons why we unable to return home on Sunday night. The news that we were not going to be discharged on Sunday about sent me over the edge. I just cried and asked her to please let us go home. After weeks of not even thinking about home, I was ready. Natalie was past ready. We spent the last 7 days either carrying Natalie around the 8th floor or pushing her for endless hours in the stroller. Every time we would enter the room and she would see her bed she would cry. She wanted to be home too. And of course Brad was beyond ready to be home and see the animals and sleep in our own bed.
Endless games of scrabble, strolling Natalie until the wee hours of the morning and the stress of having another surgery this spring are now long gone. Okay, you are right, we had to bring the scrabble board home with us and we have even played a game since being home. We are so thankful for the miracle the God gave us and for all the wonderful people that we met while we were in Boston. So many people have touched our lives both directly and indirectly and God has been calling us to do more and be better stewards of the gifts that he has given us. We are excited for the year to come and we are starting a new year with a new prospective.
Thank you so much for all the support throughout this experience. Whether a gentle smile on the 8th floor from others who truly understand our fears or those who reached out to us and supported us in prayers, cards, snacks, and financial ways we could not have gone through this with out you ALL. Each and every one of you helped us to cope and heal. Thank you and we hope that the rest our blog is dedicated to following our baby girl and her life. Her 1st birthday will be quite the celebration.
Here are a few pictures for you all to enjoy.
Hanging with Mom
My Favorite Face!
Unwrapping Presents with Dad
Brads Birthday! Unfortunately, I could deliver on the Vikings win!
Stroller Girl
Ready for Home
FINALLY HOME!!!!!
Love,
Brad, Heidi & Natalie Henke
Tuesday, January 8, 2013
Mini update!
Hello Everyone,
Sorry that it has been awhile since our last post. I am sure that you are anxious to know more! That is how we have been feeling too. The last few days have been a balancing act between diuretics, feedings, and weaning pain medications. We hear, "Let's move forward". "Let's slow down". "Let's go backwards" and then the other one, "Let's do nothing and see what happens".
Natalie is doing very well when it comes to her heart and how it is adapting to the changes in circulation. It's the pain medicine and the 12 other drugs that she is on that are holding us back. One drug makes her pee, so we need 2 other drugs to help her maintain her potassium. One makes her sick, so we give another one to stop making her sick. Where does it all end? It's been a battle to say the least. With that said, we hope that in the next few days, we are able to wean her off of some of the heavy diuretics and pain meds. I don't think that she is experiencing much pain any longer, but her body has gotten used to having them and it's a slow process to wean her from them.
She is doing very well and we are very hopeful to be home soon. Brad and I have been taking turns staying at the hospital to make sure that we are involved in what goes on and be there for Natalie. We didn't stay overnight in the ICU. Now that we are in the recovery, she doesn't get her own nurse. Gee, I guess that's all we can get for 5K a night. Staying at the hospital also means no sleep for one of us and the other one gets to go home and do laundry and other chores. Mostly we try to get enough sleep to stay sane. The days really do fly by.
Sorry that I don't have any photos tonight. We will post some from the last few days tomorrow.
Thank you so much to all our family and friends who have continued to pray, and send cards and support and care packages our way. This really has been a team effort! Thank you so much.
I will share more tomorrow!!!
Good Night all!
Sorry that it has been awhile since our last post. I am sure that you are anxious to know more! That is how we have been feeling too. The last few days have been a balancing act between diuretics, feedings, and weaning pain medications. We hear, "Let's move forward". "Let's slow down". "Let's go backwards" and then the other one, "Let's do nothing and see what happens".
Natalie is doing very well when it comes to her heart and how it is adapting to the changes in circulation. It's the pain medicine and the 12 other drugs that she is on that are holding us back. One drug makes her pee, so we need 2 other drugs to help her maintain her potassium. One makes her sick, so we give another one to stop making her sick. Where does it all end? It's been a battle to say the least. With that said, we hope that in the next few days, we are able to wean her off of some of the heavy diuretics and pain meds. I don't think that she is experiencing much pain any longer, but her body has gotten used to having them and it's a slow process to wean her from them.
She is doing very well and we are very hopeful to be home soon. Brad and I have been taking turns staying at the hospital to make sure that we are involved in what goes on and be there for Natalie. We didn't stay overnight in the ICU. Now that we are in the recovery, she doesn't get her own nurse. Gee, I guess that's all we can get for 5K a night. Staying at the hospital also means no sleep for one of us and the other one gets to go home and do laundry and other chores. Mostly we try to get enough sleep to stay sane. The days really do fly by.
Sorry that I don't have any photos tonight. We will post some from the last few days tomorrow.
Thank you so much to all our family and friends who have continued to pray, and send cards and support and care packages our way. This really has been a team effort! Thank you so much.
I will share more tomorrow!!!
Good Night all!
Thursday, January 3, 2013
January 3 Update
Hi everyone,
We're out of the ICU as of yesterday, and we're in the recovery wing of the hospital. This is good since it means we're one step closer to going home, it's not so good since we now have to share a room. But, we're thankful that we're one step closer to ND. Natalie is doing REALLY well, and continues to be more like herself every day. She's making her strange noises again, and is grabbing everything she can. She is sitting up, eating a lot, and getting some of her chubbiness (I'm not sure if that's a word, but it is now) back.
We're still waiting for them to wean Natalie off of the pain medications they had her on. This is a long process, and we're working on being patient. They also are watching the heart to make sure the functionality on her left side is getting closer to normal as her heart adjusts. These are the main barriers to overcome. Everything else is going great. She looks good and is feeling good.
We're still unsure as to when we'll be coming home. We're hoping for sooner over later. Again, we thank all of you for checking up on us, and for all of the prayers. We hope everyone's new year is going well.
We're out of the ICU as of yesterday, and we're in the recovery wing of the hospital. This is good since it means we're one step closer to going home, it's not so good since we now have to share a room. But, we're thankful that we're one step closer to ND. Natalie is doing REALLY well, and continues to be more like herself every day. She's making her strange noises again, and is grabbing everything she can. She is sitting up, eating a lot, and getting some of her chubbiness (I'm not sure if that's a word, but it is now) back.
We're still waiting for them to wean Natalie off of the pain medications they had her on. This is a long process, and we're working on being patient. They also are watching the heart to make sure the functionality on her left side is getting closer to normal as her heart adjusts. These are the main barriers to overcome. Everything else is going great. She looks good and is feeling good.
We're still unsure as to when we'll be coming home. We're hoping for sooner over later. Again, we thank all of you for checking up on us, and for all of the prayers. We hope everyone's new year is going well.
Gimme' a hug.
Smiling again.
She's eating Sniffy.
Opening presents today, Christmas was a little later this year in our family.
She's more interested in the paper than she is the presents.
Tuesday, January 1, 2013
New Year Update: Her First Smile Since Surgery
Good morning, and Happy New Year,
We got a great New Year's gift this morning when we got here, Natalie smiled for the first time since she had her surgery. It was a very welcome sight. They had planned on taking out her feeding tube sometime today or tomorrow, but Natalie decided that it was coming out at 4:00 this morning, and she took it out herself. So, no more feeding tube. She is eating much better, and milk is staying down now. That is a definite improvement.
They still think we will move out of ICU tomorrow, and move over to the recovery wing. We'll know with more certainty in the morning when the regular doctors are back at work. Then, it's just a matter of making sure she's eating and keeping excess fluid off. Once that's accomplished, and they've weaned her off of the medications, then we can come home (finally).
We hope everyone's New Year is going well, and we look forward to seeing all of you very soon.
We got a great New Year's gift this morning when we got here, Natalie smiled for the first time since she had her surgery. It was a very welcome sight. They had planned on taking out her feeding tube sometime today or tomorrow, but Natalie decided that it was coming out at 4:00 this morning, and she took it out herself. So, no more feeding tube. She is eating much better, and milk is staying down now. That is a definite improvement.
They still think we will move out of ICU tomorrow, and move over to the recovery wing. We'll know with more certainty in the morning when the regular doctors are back at work. Then, it's just a matter of making sure she's eating and keeping excess fluid off. Once that's accomplished, and they've weaned her off of the medications, then we can come home (finally).
We hope everyone's New Year is going well, and we look forward to seeing all of you very soon.
Eating normally again.
She wouldn't smile for the camera, this is as close as she'd get.
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