Sep 7, 2012 | Natalie's Life
Good morning,
Natalie got out of the hospital yesterday afternoon, and we’re hanging out in a hotel for a couple of days. We go back over today to get a chest x-ray, but that’s about it. They want us close for a day or two, and Heidi and I will monitor Natalie in case something would happen. Then, we’ll be ND bound on Saturday morning. Natalie is doing extremely well. She’s happy and active, and we’re going to go see some of the sites in Boston today. A couple of Heidi’s friends are coming down from Maine, and we’ll get to spend some time with them today. Thank you again for all the prayers, we appreciate it very much.
Sep 4, 2012 | Natalie's Life
Hello everyone,
Natalie is out of surgery, and is in NICU. They’re waiting for her to wake up so they can remove her breathing tube. She’ll be in intensive care until morning, then they’ll move her to recovery. Hopefully we’re still looking at a discharge day of Thursday, and we’re able to fly home on Saturday.
The surgery went as well as it could have gone, and they were able to do lot while they were in there. We’ll monitor closely, and we’ll know our next steps within a couple of months. We’ll update again tomorrow sometime. Thanks for all the prayers.
Sep 4, 2012 | Natalie's Life
The docs just gave us the update for Natalie! Natalie is doing very well. They just placed the balloons in her pulmonary veins to increase blood flow. Wee assume this is done to help the heart get more blood and hopefully grow the left ventricle. They are going to start creating the hole between the left and right ventricles now. We are just waiting patiently in the waiting room that doesn’t allow for food drink or cell phone use. GO ahead and insert the sarcasm in that last sentence. Those of you who know Brad and me know that patience is now our strongest life skill. Hope to see our baby soon! I want to hug her and give her snuggles…..
Sep 4, 2012 | Natalie's Life
Hi everyone,
Well, we got to Boston on Sunday, and Natalie was admitted yesterday. She was just taken into surgery at 10:00, and she was sedated. They did an echo, and that was completed a short time ago. She just went into surgery. Today, they will be performing surgery via a catheter inserted into the femoral artery. So, they will not be opening her chest up again, yet. They will attempt to make a hole in her left ventricle. The purpose of this is to force more blood flow into the ventricle, thereby hopefully causing the ventricle to grow to the point where it can be a functioning part of the heart in the long term. This way, she’ll end up with a fully functioning, two ventricle heart.
We will not know if this was successful for several weeks or more. We will continue to monitor on a weekly basis in Bismarck, and the information will be relayed to Boston. There will be at least two more surgeries even in the best of scenarios, so there is still quite a journey ahead for Natalie. We will continue to pray, and we appreciate all of you who are doing the same.
I’m not as eloquent as Heidi, I’m a little more brief in my writing. So, there’s the short, to the point synopsis so far. I’m sure Heidi will have a better, more creative post later today. Stay tuned, and again, thank you all for your thoughts and prayers. We truly appreciate all of you.
Aug 16, 2012 | Natalie's Life
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.
Jul 31, 2012 | Natalie's Life
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.
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