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.

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.