Hello everyone,
I've always loved the Veggies Tales and one of my favorites has always been The Pirates that Don't Do Anything! I can't tell you how many times Brad and I have laughed about the video and joked about how we "have never been to Boston in the fall". UNTIL NOW!!!
After speaking with the doctors at the Boston Children's Hospital we have decided to take Natalie there to continue her journey. We look at her everyday and think, Wow! She is doing so well and looks so healthy, but we know that we are still just at the beginning of this long journey.
Our goal has always been to make decisions that will give Natalie a long and healthy life and with her anatomy being so close to normal we wanted to give her the best chance to have two ventricles. When we first sat down with Dr. St. Louis in Minneapolis that was our goal; two ventricles and avoid a possible heart transplant later in life. Some of the cardiologists felt like we should go with the single ventricle repair because they didn't feel that the left ventricle would grow. I think they felt is was pointless and it would prolong the inevitable. Some of them thought the hybrid would give her a chance. We didn't anticipate that that decision would lead us to where we are now. Had we not chosen to go with the hybrid we would never have had this chance to go to Boston.
Boston Children's Hospital has been following and reviewing Natalie's case since the beginning. They offered a series of surgeries that will give her a chance to have 2 ventricles and we will be starting that process soon. After our last check up here in Bismarck Natalie's ASD is getting smaller and closing. The ASD helps to keep the pressure down in her left ventricle. As it closes, which is a natural process for most babies, her pressure rises in her left ventricle. So we need to act soon.
The first step will be to create the septum (hole) in the floor of her left ventricle into her right one. She has some unique anatomy. The right ventricle grew a "tale" that wraps around under the left ventricle. (It's so strange to think about creating a hole instead of fixing one.) The doctors feel this will help to regulate the pressure in the left ventricle like the ASD was doing. Good news is that they think it can be done through her femoral artery in the cath lab instead of having to open her chest again. Hopefully all will go well and they can accomplish what they need to without another open heart surgery at this time. We are not sure when the next phase will happen. They say the best chance to recruit muscle tissue, like the heart, is when they are infants. I am sure the next step will be done as soon as they feel she is strong enough and ready for the next step, and if they see the results that they are hoping for.
With everything there is risk. The single ventricle route is risking to. Unfortunately, the next few years will involve a lot of risk and we pray that Natalie will do well. The doctors are very optimistic that this will be successful and give Natalie a heart that is as close to normal as possible with 2 ventricles. We pray that God will watch over Natalie and keep her as strong and healthy as she looks today. Everyday she makes me smile. I noticed today that my cheeks were hurting from smiling at her so much. I truly underestimated the love that I would have for her. I always knew I would have a strong bond with her, but I never imagined it would feel like this. I will have to upload some pictures so that you can all see how chubby her cheeks are now. She is so beautiful! We love her so much!
We pray for her left ventricle to grow and for guidance and wisdom to make the best decisions for Natalie. We pray to be able to hear God voice and remember the grace that he has shown to all of his children.
Thursday, August 16, 2012
Tuesday, July 31, 2012
The Road Less Traveled
Hello again everyone! It's been a while since our last post, mostly because everything has been going well and also because, wow, babies take a lot of time. What happened to "Babies sleep all the time"? Even when she is sleeping, there is still so much to do to keep the rest of our lives in tact. Brad has been busy keeping the house and the yard taken care of along with taking care of his girls!!! What an amazing man he is. Natalie and I are very blessed to have such a hard working and loving man in our lives. Brad is back to work now and I am dreading the thought of leaving my baby with someone else during the day. It's so hard to think about being away from here all day long!
We have had several small appointments in Bismarck and made the trip back to Minneapolis once since our last post. Natalie is doing so well. You couldn't look at her and tell that she has been through so much already. She now weighs almost 10 pounds and has begun to get those chubby little legs that babies get. They are so cute and I love pinching them along with her chubby little checks! She is such a sweet little girl. She loves mornings, outside and her swing!
Our last visit to Minneapolis left us with the next of many hurdles that we will face on this journey. We meet with the doctor about Natalie's progress and were forced back into reality. I think both Brad and I thought that if she was doing well with the hybrid surgery, she would simply have to have the bands taken off her lungs and we would move forward with life and a happy little girl. We soon learned that was not the case and that was just one step of the process. We still need to see growth in the left ventricle and hope that the arterial septum does not close. They are continuing to watch that every week. After the echo, Dr. K started to talk about next steps and that is where things get more complicated. Because Natalie is doing so well and her left ventricle is healthy, just small, they have been researching ways to allow Natalie to keep both ventricles instead of going to the single ventricle pathway. It sounds like she has been the talk of the town lately. They have been meeting with Boston Children's Hospital to discuss ways to move forward with 2 ventricles if possible. We will be meeting the doctors next week to talk about a procedure that has not been done before, but would possibly allow Natalie to have a 2 ventricle heart and avoid a heart transplant in the next 15-20 years. This procedure has not been done before but with Natalie's unique anatomy they are hopeful that they would be able to create a hole between the left and right ventricles. Later they would use part of the right ventricle to increase the size of the left. I know that is hard to understand and I wish I had a picture to share, but you will have to use your imagination. We will know more next week about what is possible. So we have to be praying about what road to take. A single ventricle means 3 surgeries and a heart transplant at some point. The other procedure means uncharted territories and a procedure that has never been done before, but a 2 ventricle heart for Natalie. What a special little girl we have. Dr.K said that if this procedure works, Natalie could write a new chapter for Dr.s and future kids born with hypo plastic left heart.
Please be praying for Brad and I to have the wisdom to make the best decision for Natalie and for us to listen to Gods voice. This will be a huge decision for us about the future for Natalie.
We have had several small appointments in Bismarck and made the trip back to Minneapolis once since our last post. Natalie is doing so well. You couldn't look at her and tell that she has been through so much already. She now weighs almost 10 pounds and has begun to get those chubby little legs that babies get. They are so cute and I love pinching them along with her chubby little checks! She is such a sweet little girl. She loves mornings, outside and her swing!
Our last visit to Minneapolis left us with the next of many hurdles that we will face on this journey. We meet with the doctor about Natalie's progress and were forced back into reality. I think both Brad and I thought that if she was doing well with the hybrid surgery, she would simply have to have the bands taken off her lungs and we would move forward with life and a happy little girl. We soon learned that was not the case and that was just one step of the process. We still need to see growth in the left ventricle and hope that the arterial septum does not close. They are continuing to watch that every week. After the echo, Dr. K started to talk about next steps and that is where things get more complicated. Because Natalie is doing so well and her left ventricle is healthy, just small, they have been researching ways to allow Natalie to keep both ventricles instead of going to the single ventricle pathway. It sounds like she has been the talk of the town lately. They have been meeting with Boston Children's Hospital to discuss ways to move forward with 2 ventricles if possible. We will be meeting the doctors next week to talk about a procedure that has not been done before, but would possibly allow Natalie to have a 2 ventricle heart and avoid a heart transplant in the next 15-20 years. This procedure has not been done before but with Natalie's unique anatomy they are hopeful that they would be able to create a hole between the left and right ventricles. Later they would use part of the right ventricle to increase the size of the left. I know that is hard to understand and I wish I had a picture to share, but you will have to use your imagination. We will know more next week about what is possible. So we have to be praying about what road to take. A single ventricle means 3 surgeries and a heart transplant at some point. The other procedure means uncharted territories and a procedure that has never been done before, but a 2 ventricle heart for Natalie. What a special little girl we have. Dr.K said that if this procedure works, Natalie could write a new chapter for Dr.s and future kids born with hypo plastic left heart.
Please be praying for Brad and I to have the wisdom to make the best decision for Natalie and for us to listen to Gods voice. This will be a huge decision for us about the future for Natalie.
Thursday, July 12, 2012
Life is an Adventure!
Good news again!!! Natalie now weighs 8lbs 8oz. Still not as big as I was when I was born. I feel like I should apologize to my mother!!! She is 20 1/2 inches long!!! Dr. Fernadez said that everything is looking very good with her oxygen stats, weight and her echo looked good too!!! We are still focused on watching to see if the left ventricle is going to grow. We will go back to Minneapolis the end of July to meet with the doctors there. So until then we need to pray for growth in her left ventricle.
We have been home for almost two weeks now and life is very different from when I left. We now have a little girl sleeping in the room next to us and all my time revolves around her! That won't change for the next 18 years I'm sure! She is such a doll and I just love to hold her and snuggle her. She is finally starting to adjust to life at home. It's been tough for all us, but we are figuring it out slowly. Natalie is a bit colic and that has been a challenge. Its so hard to want to comfort her and not be able to with out nursing her and making her sick. Mommies and daddies are supposed to be able to comfort their babies when they hurt. We have learned through everything that we must take one day at a time and enjoy each day as it comes. She is starting to make some adjustments and we have enjoyed to singing together and going for walks. She loves her swing and loves to go for walks with Dad. The weather has been to warm to walk much lately, but we look forward to more walks when the weather cools down. She also enjoys her toys that sing to her and have lights!!!
Life is going well! Brad goes back to work on Monday and then it will just be me and the bug all day! I am sure that we will have a blast! We will keep you updated with her progress. Thank you so much for praying for us and supporting us in our journey with Natalie Bug!
Good news again!!! Natalie now weighs 8lbs 8oz. Still not as big as I was when I was born. I feel like I should apologize to my mother!!! She is 20 1/2 inches long!!! Dr. Fernadez said that everything is looking very good with her oxygen stats, weight and her echo looked good too!!! We are still focused on watching to see if the left ventricle is going to grow. We will go back to Minneapolis the end of July to meet with the doctors there. So until then we need to pray for growth in her left ventricle.
We have been home for almost two weeks now and life is very different from when I left. We now have a little girl sleeping in the room next to us and all my time revolves around her! That won't change for the next 18 years I'm sure! She is such a doll and I just love to hold her and snuggle her. She is finally starting to adjust to life at home. It's been tough for all us, but we are figuring it out slowly. Natalie is a bit colic and that has been a challenge. Its so hard to want to comfort her and not be able to with out nursing her and making her sick. Mommies and daddies are supposed to be able to comfort their babies when they hurt. We have learned through everything that we must take one day at a time and enjoy each day as it comes. She is starting to make some adjustments and we have enjoyed to singing together and going for walks. She loves her swing and loves to go for walks with Dad. The weather has been to warm to walk much lately, but we look forward to more walks when the weather cools down. She also enjoys her toys that sing to her and have lights!!!
Life is going well! Brad goes back to work on Monday and then it will just be me and the bug all day! I am sure that we will have a blast! We will keep you updated with her progress. Thank you so much for praying for us and supporting us in our journey with Natalie Bug!
Thursday, June 28, 2012
All Most There!
Brad and I are counting the days until we get to come home. Our Target..... Saturday a.m. for discharge. YEAH!!!
Although we have come along way, we still have one last hurdle to get over. The little bug needs to gain some weight. She must get that from Daddys side... Not Mommies. She is back to her birth weight now after 3 weeks. We hope now that she can put some weight on since she is feeding again! She is eating much better now. A great breakfast eater and an afternoon snacker! She is doing very well though.
I give a big "Job Well Done" to all you mommy's and daddy's who have made it through the first few weeks with their babies! It's not easy. We stayed in the room with Natalie her first night and I believe that I got an entire 30 minutes of sleep in a recliner and Brad maybe clocked 45. Not enough to raise a baby on!!!! It's been tough, but we are learning. So much to learn from when and how to nurse, to diapers and how to burp her! Sounds like easy chores, but it's been difficult at times. We are catching on though and today was a better day than yesterday and that's all we can hope for.
So the plan is to gain some ounces over the next 2 days and hopefully get home on Saturday night.
Natalie is doing well. She is a bit unsure what to do in the big quiet room, but she still gets plenty of disruptions to make her feel at home. The CVIC was so loud and busy all the time and I think she got used to being poked at and monitored. She is going through withdrawal from her CVIC family of nurses and doctors. We also have gotten to hold her a lot more in recovery, so she thinks that is the cat's meow and wants to be held all the time. I think that she is just as excited to get home as we are.
We will have to come back in a month for her check up and have weekly echos in Bismarck as the watch to see if the left ventricle will grow with more blood exposure. So we are praying for growth in the left ventricle. They have changed her diagnosis just a little to Hypoplasia of the Left Ventricle. The doctor said she is quite a unique case and that they only have research from 15 cases of this. Maybe we can charge them for the learning opportunity that Natalie provided. We have to re-coop the money somehow, Right!!! If not I guess we will have to settle with our second business investment.... Breast Milk production!!!!
Thank you to all who have been praying for Natalie and our family! Although it's been a long journey and we have a long way to go, we are optimistic and thankful for God's Grace and the love and support of our family and friends. We should be home soon and can't wait to see everyone again once we settle back in. I am quite sure that we will never be more excited to see exit 159 as we will on Saturday!!!!!
See you all soon!!!
Although we have come along way, we still have one last hurdle to get over. The little bug needs to gain some weight. She must get that from Daddys side... Not Mommies. She is back to her birth weight now after 3 weeks. We hope now that she can put some weight on since she is feeding again! She is eating much better now. A great breakfast eater and an afternoon snacker! She is doing very well though.
I give a big "Job Well Done" to all you mommy's and daddy's who have made it through the first few weeks with their babies! It's not easy. We stayed in the room with Natalie her first night and I believe that I got an entire 30 minutes of sleep in a recliner and Brad maybe clocked 45. Not enough to raise a baby on!!!! It's been tough, but we are learning. So much to learn from when and how to nurse, to diapers and how to burp her! Sounds like easy chores, but it's been difficult at times. We are catching on though and today was a better day than yesterday and that's all we can hope for.
So the plan is to gain some ounces over the next 2 days and hopefully get home on Saturday night.
Natalie is doing well. She is a bit unsure what to do in the big quiet room, but she still gets plenty of disruptions to make her feel at home. The CVIC was so loud and busy all the time and I think she got used to being poked at and monitored. She is going through withdrawal from her CVIC family of nurses and doctors. We also have gotten to hold her a lot more in recovery, so she thinks that is the cat's meow and wants to be held all the time. I think that she is just as excited to get home as we are.
We will have to come back in a month for her check up and have weekly echos in Bismarck as the watch to see if the left ventricle will grow with more blood exposure. So we are praying for growth in the left ventricle. They have changed her diagnosis just a little to Hypoplasia of the Left Ventricle. The doctor said she is quite a unique case and that they only have research from 15 cases of this. Maybe we can charge them for the learning opportunity that Natalie provided. We have to re-coop the money somehow, Right!!! If not I guess we will have to settle with our second business investment.... Breast Milk production!!!!
Thank you to all who have been praying for Natalie and our family! Although it's been a long journey and we have a long way to go, we are optimistic and thankful for God's Grace and the love and support of our family and friends. We should be home soon and can't wait to see everyone again once we settle back in. I am quite sure that we will never be more excited to see exit 159 as we will on Saturday!!!!!
See you all soon!!!
Monday, June 25, 2012
Recovery (Day 3)
We got really good news today. Natalie will be moving out of Intensive Care for the first time in her life. We'll be moving up to the recovery floor sometime today. They think we'll be discharged from the hospital sometime toward the end of the week. We are extremely thankful. Natalie has been doing very well and is eating a lot. She will have no tubes or wires coming off of her body as of today, and she is looking great.
Saturday, June 23, 2012
Recovery (Day 1)
Natalie is recovering well. She still has a breathing tube in and a drain tube in her chest. Hopefully, they'll be removing the breathing tube today or early tomorrow, depending on how awake she is. If she stays awake, they'll remove it tonight. We're hoping for that, it's very hard to watch her struggle against that tube in her throat. Other than that, she is doing very well. Her stats all look good, and she's doing as well as can be expected.
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