Thursday's Update

No new updates today. We are still waiting for Willow to come out of heart block. Please don't give up praying. Hope is a hard thing to come by these days. Some moments in the day, I have hope, I believe that God is going to give us a miracle. But tonight, tonight I am hopeless. We are still in the ICU and keep seeing people leave and we are still here. It's really hard. Hard to think about my colleagues starting school today, hard to see friends and family on social media posting pictures of fun things they are doing or even every day pictures, hard to wake up and realize we have to do another day. With Willow's surgery there was a 10-15% chance she would get heart block, but only a 1% chance she would need a pacemaker. It's really hard not to feel like we are getting the raw end of the stats in life. I feel bad posting this because it is really depressing, but I guess that's just how we are feeling right now. That's why we are desperate for your prayers. Thanks for your continued prayers and encouragement.

Wednesday and Waiting

It feels a little like that movie Groundhog's Day around here, the date on the calendar is different, but the days all seem the same. We continue to wait for her heart block to go away. Every day seems harder and harder to have faith that her regular rhythm will come back.  An EP (pacemaker specialist) came in today to go over what life with a pacemaker looks like. Right now surgery is scheduled for Monday afternoon. It will be a 2 hour surgery with a 5 day recovery. They would open her chest cavity back up to insert the pacer wires directly to the heart and there would be a small incision under the rib cage where the pacemaker itself would go. It is different from adults because her veins are too little to send a pacer wire through. The battery life would last around 5-10 years (give or take) before they would have to do a procedure to replace the battery. It is an outpatient procedure. She also cannot do contact sports- so our dream of our daughter playing football is out the window. We also have to have extra check ups once a year. We would more than likely need to come back to Ann Arbor to do replacement surgeries while she is still a kid as they do not have a pediatric heart surgeon in Sioux Falls. Please continue to pray that her heart block goes away and she won't need a pacemaker.

Doctor is recommending more time in hopes that heart block goes away

Dr. Romano came in today and after talking to the pacemaker Cardiology specialist, they recommend giving her heart more time to heal before deciding on putting a pacemaker in.  They usually recommend 7-10 days and they count tomorrow as day 7. We decided as a team to push the surgery until either Friday or Monday.  We feel good about this decision, but it continues to keep us in waiting, which is very hard this far away from home. We are so appreciative for your fasting and prayer. Please continue to pray that the heart block goes away and no surgery and for wisdom on when to do the surgery.

Surgery Scheduled for Wednesday Afternoon if Heart Block Doesn't Go Away

I have taught about the body's response to stress for years as fight or flight. But lately I've been questioning that term, because I have been experiencing fight AND flight- which I feel is worse. I am equally wanting to stay and fight this and to run away. My body feels like a car whose driver is using two feet at once- pressing on the gas and the brakes at the same time, continually spinning out. The best way I can describe the feeling is being trapped. I just feel so helpless as to how to make it better. Imagine what continually pushing on the brakes and gas would do to a car, it makes me wonder what it is doing to my body. We need prayers- lots of them.

Our surgeon came in this morning to have the conversation. Willow is still in heart block and we are on day 7.  Surgery to put an internal pacemaker is scheduled for Wednesday afternoon.  They would open her back up to insert the pacemaker. The surgery is not as intense as her first one, but it is still a big deal. I still have hope that God is going to do a miracle, but Tim is having a really hard day. Dr. Romano said that if Willow's heart gets back in normal communication at any time between now and then they will cancel the surgery. She has even had a case where it came back in the operating room. I am calling all prayer warriors to fast and pray that Willow's heart block goes away by tomorrow (Tuesday). That whatever is blocking the conduction between her atrial and her ventricle would be removed. That she would not have to have an internal pacemaker put in.

A Waiting Game

We are officially in a waiting game. Willow is feeling better today and off all pain meds. So the only thing that is holding us here is her heart block. It seems so small, but it is a big deal. We were originally told to plan to be here 7-10 days, but now how long we will be here is quite open ended. They could wait up until two weeks after surgery (to make sure the heart won't start communicating again) to put in an internal pace maker, then there would be recovery again from open heart surgery. We are now out of the bay in the PICU and in an individual room in the PICU. But being in a city so far away from home, staying in a small bedroom in the Ronald McDonald house (with two single beds pushed together, your 3 year old sleeping between you, and your mother on an air mattress in the same room), and no car makes even a short time seem really long. We are all getting a little stir crazy, especially Cale. He has been really good, but I can tell he is getting bored and because we are so weary, we have less and less energy to entertain him.
Believe me, I know it is hard to keep praying for the same  thing over and over, but I beg you to continue joining us in prayer that her heart block goes away. I keep having this vision that just like Joshua, in the Bible, who continued to march around Jericho with no results each day, I will continue to trust until the walls blocking conduction in Willows heart come tumbling down. Pray that tomorrow is the day and we can come home soon. Pray for our hearts. We didn't have heart surgery like Willow, but they are still so heavy. I can't thank you enough for all your prayers.

Saturday

On the way to the hospital this morning Tim said, "I've just been praying that God would give Dr. Romano insight. That he would give her an idea of something to do to get Willow out of heart block." I thought that was a good prayer and we continued walking. Today started off well. She got off a lot of her wires so I finally got to hold her! But it ended as one of Willow's hardest days. Willow came off of most of her sedatives and morphine. She was visibly uncomfortable, started throwing up, grunting, and her eyes were rolling back in her head. She was so uncomfortable that she barely slept. It was so hard to watch and she still had enough wires that she was hard to console! When we left for dinner tonight the nurse said that it was safe to say that Willow was in morphine withdrawal. And that's exactly what it felt like! So please pray for her to feel better and for some rest. This afternoon (while Tim took Cale to nap) the doctor on Willow's floor came and spoke with me. He said he spoke with Dr. Romano this morning and they had the idea to put Willow on Prednisone (a steroid). There has been research that it helps with heart block. I immediately felt like it was an answer to Tim's prayer. Pray this is the case. That Willow comes out of heart block in miraculous ways. Because the farther out from surgery we are the more nervous everyone gets. It is really wearing on us. Tim and I are both very discouraged. Will you lift us up in prayer and continue to pray that Willow's heart block goes away and that there is no other surgery and would you pray for it to happen soon? Thank you for your continued prayers!

Friday's Progress

Today Willow continued to make gains. They removed her chest tube and at some point tonight, they will remove her ventilator. They did 3 sprints today, which are practice runs without the ventilator to make sure she was ready. She did great! My mama heart broke tonight when we were there. She was trying to cry, but couldn't with the vent in. All the nurses said she was ready to get it out and would when the first possible doc was available but a new kiddo was admitted into the bay after a long surgery and all the doctors that were available would be helping with that. We were also kicked out so that they could get the new little one admitted. I get it, I just felt bad for my baby who is uncomfortable and wanting the vent out. Once she gets the ventilator out, they wait 6 hours and then I can try to feed her! And I can hold her! It brings tears to my eyes! They continue to take cords off and meds down and today would be a great day... except for the pacemaker. She is still in heart block. And all of these gains seem tainted with the pacemaker still in, because she will go back on them all if they have to do another open heart surgery. So tonight I am begging you to flood the gates of heaven with pleas and groaning for the conduction of Willow's heart. That it would fire without the pacemaker and in perfect unison. That they would be able to remove the pacemaker tomorrow and that she would NOT need another open heart surgery for a permanent pacemaker. They won't make that decision till Tuesday, but the farther out from surgery we go, the less likely it will start beating on it's own and in all honesty, it's also just so stressful for me! I can barely have joy in her other gains with the pacemaker still taunting me! Thank you for continuing to pray and support us. This really would be so much harder without your prayers and encouragement!

ps. I love Ann Arbor and the people here! I have already made life long friends with two nurses! We have been here for 5 days and there are bits and pieces that feel like home or family. Except we still really miss home. We were on the waiting list for Ronald McDonald House and finally got in tonight, so that will be a different experience too. Pray it goes well.

Willow got her dressings off yesterday.

 For those of you who have prayed for Cale, your prayers are working. He has been a Superman through all of this!

 Probably because he still gets so much attention! (Playing Guess Who)

Strangers at restaurants are drawn to him and let him walk their dog!

One of our angel nurses Kathy- We called her Kitty Kat. Those of you who know us, know how much we love cats;).