Natalie went to be with God today. She went peacefully and without pain, surrounded by love in our arms. We are thankful for the past two days as we’ve been able to hold her close and have some last moments together with lots of hugs and kisses. She gave us two very special days. She even had a talk with the new baby. We have a huge empty spot in our lives and in our hearts. It is made tolerable only because we know where she now is, and it is a better place than any of us can imagine. We pray that God will continue to fill us up with his grace and the memories of Natalie’s love.
She now has a perfect body, and is with her Creator in heaven. No more pain, no more discomfort, no more IV’s, and no more surgeries. She can drink all the water she wants, and can run and play like she was never able to do on earth.
Natalie touched everyone she came into contact with. She exemplified God’s love as she was here on earth, and we know that she will be remembered by so many. It was amazing that the hospital staff who see thousands of kids a year all remember Natalie. They all seemed to have a special place in their hearts for our little girl. We thank God that He gave Natalie to us to care for. We wish we could have kept her longer, but we will always cherish the past 28 months for as long as we live. Our memories of her are happy, and they will not diminish for as long as we live.
Thank you all for your prayers, and for the prayers we know will continue. We have been blessed beyond belief by the people that God has put in our lives. We will update again with information about the service and other things that we will be putting together to remember this precious gift from God.
God promises blessings in our lifetime. We just never know how long they will stay with us. We love you Natalie Jean. Our joy lies in knowing that we will see you again someday soon!
When she was 3 months old, cheered on dad
The dog really loved her, too
Beautiful smile again. She wore it a lot, even though her body was always hurting a little.
She loved her iPad
Yesterday, we got news that we’d known was possible all along, but were hoping would never come. We met with the entire team, and they are at a point where there is nothing else they can do for Natalie. Her kidneys and lungs are not going to recover to a point where they can support her body.
From the time all of this started, every decision we’ve made has been with Natalie’s best interest at the forefront. We would both do or give anything in order to give her the best chance at a full life. Now, we have to make decisions that will help her live out her remaining days in the most peace and comfort that is possible. Please pray for comfort for Natalie, we want this more than anything.
We draw comfort knowing that she will be in the arms of her Creator in heaven. She will finally know what it feels like to be comfortable and have a healthy, heavenly, body. She can walk, run, and play and do whatever she wants to do, without the limits she had on earth. I pray they have an endless supply of water for her to drink, and someone to pull her in her wagon.
She brought joy to our lives that we could have never imagined, and to the lives of everyone she came in contact with. It seems that everyone remembers her, even though some of the hospital staff see thousands of children. They remember her piggy tales and her constant need to be on the go. She traveled miles in these hospital hall ways and every one would want to stop and talk to Natalie. She is so loved., and she loved so much!
We are spending time snuggling her and loving her. Singing Itsy Bitsy Spider and If You’re Happy and You Know It. She loves those songs.
We will try to update again, right now we’re pretty emotionally drained.
Thank you all for your prayers throughout these past couple years. Thank you also to those who have helped. Friends and family for being here with us, and for watching our dog and our house for us when we’re gone. Everyone who has prayed, called, and texted; these words of encouragement help more than you can imagine. I would name everyone, but it would take a long time, and I’m afraid I’d forget someone. So, we’ll just say thank you everyone for now.
It has been a very long day and a half in Boston. Natalie got here on Tuesday, and was taken to her new temporary home in room 19, ICU at Boston Children’s Hospital. She was doing well, all things considered. That same evening, out of nowhere, she spiked a fever of 107, and her blood pressure dropped. They’re still not sure what the cause was.
I flew out as soon as I could, and finally got here yesterday just after lunch. Natalie was hardly recognizable with all the fluid that had built up within her body. Her fever subsided, but her body was unable to shed fluid. After several discussions with the surgical team, we decided to put Natalie on a heart & lung bypass machine called ECMO. This seems to have helped, as she is starting to look better, her blood pressure is back within normal range. The machine is helping her heart do its job, and the hope is that she can recover to the point where they can take her off the machine at some point. The time you can stay on the machine is limited, so we’re praying that her body will recover so that she can wait for her heart.
There is still a lot of uncertainty, and the outlook is very uncertain. But, at least we’re moving in the right direction, and we’re in a MUCH better spot than we were 24 hours ago. We really appreciate all the prayers, and they’re needed now more than ever. The next days will be very important, as she continues to shed fluid, and we find out if her kidneys are going to recover. We’ll do our best to keep you all updated.
Well, as the title suggests, we’ll be on our way back to Boston. Our surgeon in Minneapolis is leaving to begin a transplant program at the Children’s Hospital in Kansas City. Once he leaves, there will be no one in Minneapolis who can handle a transplant as complex as Natalie’s. So, since they are already familiar with Natalie at Boston Children’s, that is where we’ll go to have wait for a heart and have a transplant once one comes available.
Obviously, this isn’t what we had wanted. We like being in Minneapolis where we are closer to home, have family in town, and I can drive to Minneapolis on the weekend or take a 1 hour flight. However, this is what is best for Natalie.
The original plan was for Heidi and Natalie to leave via air ambulance tomorrow (Thursday), but Natalie spiked a fever this morning, and they are suspending those plans until Monday. That could change, but that’s the tentative plan.
Natalie has been doing well, other than coming down with a couple of infections. At this point, she’s been sedated and on a ventilator so long, that infections are inevitable. We’re praying that she can recover and get to Boston, and hopefully they can move forward and get her off the ventilator so she’s able to move and be stronger. She wants to be held and go for walks, and God knows we miss holding her and taking her for walks.
That’s the update we have for now. We will update further when we have more details and a better idea of what to expect going forward. Thank you all again for the prayers, texts, and phone calls. We appreciate them very much.
We’re posting this one to ask for prayers for a very nice family that we’ve gotten to know, the Scapanski family. Their little girl, Mylee, passed away last Saturday, August 30.
While you’re making your second home (temporary first home for Heidi and Natalie), you get to know others who are in the hospital. You get closer to some of them, and Mylee was definitely one of them. She was the happiest kid I’ve ever met, even though she had spent her entire life in ICU. That’s not hyperbole, she was ALWAYS smiling and happy. If you needed to get a shot of happiness, you just walked by her room and looked in. She would be playing, laughing, or jumping around in her little crib. She was just learning to walk, and was full of life, energy and joy. She was special to all who got to know her, and everyone in the ICU loved her.
Mylee had a Berlin heart, which is basically an artificial heart that does the work of your heart when your heart can’t do the work it’s supposed to do. She had this device longer than any other child has had one in America (there was one child in Germany who had one longer). A cannula had slowly deteriorated, and last Saturday, it failed. There was nothing they could do to save Mylee. Even though the nurses, doctors, and surgeons see tragedies like this far too often, you can tell that this one is different. Everyone had come to love Mylee, and losing her has been especially hard.
We ask that you pray for the Scapanski family as they go through this horrible time in their lives. Also, pray for the nurses, doctors, and everyone else who has watched Mylee grow up. She was a very special little girl.
We got some very good news this morning. As we’ve shared, we had thought that we may have to go to Boston for Natalie’s transplant. The reason for this was because the surgeon in Minneapolis, Dr. St. Louis, is leaving in October to develop a transplant program at the children’s hospital in Kansas City. If he leaves, there is nobody here who could do a transplant as complex as Natalie’s.
After speaking with Dr. St. Louis this morning, he has agreed to continue to see Natalie through and perform her transplant, even if that means traveling from Kansas City to come back to Minneapolis to do it. So, that means we can remain in Minneapolis closer to home, and where we have family. We are very grateful to Dr. St. Louis for agreeing to this, and to God for getting Natalie to this point. It is nothing short of miraculous that she is doing as well as she is, compared to where she was a week and a half ago, when they weren’t sure if she’d make it through that evening. Thank you to all of you who have been praying for her, and continue to do so.
Heidi and I are going to take a much needed break this evening and go see the Vikings final home pre-season game. We’ll post some pictures and give a report sometime soon.
Here’s a pic of Natalie with her present from last week’s game.