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.

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!