We are Home!!!!!

Willow got discharged from the hospital today at 9am! I of course had an adorable going home outfit for Willow to wear that she blew out of and we had packed everything else back at the Ronald McDonald House. So the nurses quick got her one of their robes and gifted her with a hat she knited. It is just real life. It isn't perfect, but that little peanut was joyful in whatever she was wearing. We cleaned our room at the Ronald McDonald, then caught an Uber to the airport and boarded our private jet with a program called Wings of Mercy. Much like Angel Flight (which flew us out to Ann Arbor), Wings of Mercy is a group of pilots with access to private planes that donate their time and resources to flight kids to treatment in locations throughout the country. Our pilots were from Holland and Grand Rapids, MI. They treated us so well, bringing us blueberry muffins, fruit, yogurt, and coffee, and letting Cale drive the plane for a hot second! We landed in Sioux Falls around noon. It was a perfect homecoming. Loved ones gave us our space, but showed their love with balloons lining our walkway up to our house, sidewalk chalk with messages of love, essential groceries sitting on our front step, and a pumpkin and pot of flowers. I can tell you that home feels so good, but that is an understatement. It is such a gift to be home! Thank you, for praying us home. So many of you have written us cards of encouragement, given gifts, done fund raisers, called friends in Ann Arbor, done whatever you could to help. This would have been so much harder without such a strong support system behind us! Willow still has a lot of healing to do. Please continue to pray that the leakage in her heart heals, her pressures in her lungs go down, and she comes permanently out of heart block. Pray she never needs another heart surgery again! And pray for our family as we transition home.

 Our heart surgeon, Dr. Romano. She really took us under her wing. The way she treated us like family will never be forgotten. She will always be a huge part of our story.

We got a Flight!

We just heard back from a program called Wings of Mercy that they found a plane and a pilot to take us home! I will give you more details when I have them, but I know some of you have been so concerned and asking friends who know pilots! Thank you for all your efforts! And thank you for the prayers, they continue to be heard!

Thursday- A different challenge to coming home

For the most part today was a good day. Willow's pic line came out early last night, she has been mostly out of heart block in normal sinus rhythm, and she has been in good spirits. Our recent dilema comes in a different form. I put in an earlier post that we flew here with a program called Angel Flights where private pilots with private jets donate their time and resources to children receiving treatment in different locations. When we told Angel Flight that we would be released this Monday, they put the call out to local pilots and are having a hard time getting our flight picked up. It must be a busy day for these pilots' schedules. Our doctors here have been so accommodating and said that maybe Sunday would be a better day for pilots and were willing to release Willow on Sunday if that worked better. So they put that date out for pilots and we are still having a hard time getting the flight picked up. It puts us in a little dilemma, because we flew here so we don't have a car and the doctors are strongly suggesting not to take a commercial flight because of the germs and because there are no direct flights and they don't want us to get stuck in some random city. So my prayer request tonight takes on a different form. Pray that we find a way home! That a pilot with Angel Flights picks us up or we find some other way home! Thanks for the continued prayers. We are getting there!

Tuesday-An End in Sight

We woke up to good news. Willow was out of heart block in sinus rhythm from 8:30pm to 8:30 am this morning! She has been going in and out of heart block all day. Today she has mostly been in partial heart block, but her rates have been in the solid 90s all day which is an improvement. It means more beats are getting through then are being blocked. They did an echo at noon. After lunch, we came back and there was a team of doctors from infectious disease waiting for us. They analyzed her numbers and decided that she needed to be on two full weeks of IV antibiotics (that would be tomorrow). Then tomorrow they will get blood and see what her infection numbers look like (just to get a baseline), take her off IV antibiotics and transition her to oral antibiotics for 4 weeks. They will watch her for two days to make sure she does well on these antibiotics and shows no signs of allergies, then take blood on Friday morning to make sure her infection numbers are going down so they know this type of antibiotics are working. If it looks good, they will then take her PIC line out Friday and we will get out of the ICU to the recovery floor.We have been in the ICU for over 4 weeks so this is huge progress. We will stay there for the weekend and if everything goes well, we will be released on Monday! Her heartblock, Mitral valve, and pulmonary hypertension numbers all look better on today's echo and they will just keep watch over them this next year. In most cases they get better on their own, but she may require another open heart surgery down the road. Please pray she doesn't need one. Everything isn't perfect, but we will take today as a win. We can see home from here and it seems so beautiful! I will end this by giving God the glory. He has brought Willow out of some pretty dire circumstances and has answered our prayers. Thank you so much for praying us through this. Please keep praying us home!

We Need Big Prayers for Tomorrow's Echo

Willow is doing well again today. She had a good night and was probably the happiest I've ever seen her this morning! She was out of heart block from 3:30am to 9:30am! She has never been out of heart block that long without meds to help her heart rate (last time she had a long run she was on epinephrine). And guess what happened? My dad and sister came and surprised us for the weekend! It is so good for my soul to have them here. The nurse told us that tomorrow the plan is to get another echo to see how her heart is functioning. The doctors will then get together and make a plan for how much more IV antibiotics and whether she is good enough to go home. We need a lot of prayers for this echo:
1. They are concerned about the pressures in her lungs and pulmonary hypertension. Please pray the pressures go back down.
2. They have found some mitral valve regurgitation (leakage in the heart). This is pretty common after this type of surgery and usually it gets better with time. The last echo Willow had was when they found the infection, but her leakage had gotten worse (moderate to severe). It was mild right after the surgery. This could be because of the infection and heart block, but this is what could cause another surgery down the road and if it's bad enough, could keep us here for another surgery before we leave. Please pray for a miracle- that her MR leakage has gotten better (mild) or gone.
3. Continue to pray for her heart block. Little by little, her heart rate seems to get better. I am believing that a miracle is on it's way and thanking God in advance for what He is about to do.
4. Pray that we will come home at peace with her heart and health. Pray there are no hiccups. We know by now there could be issues that arise that we aren't even aware of. Please pray us home.