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.

Friday: A Step in the Right Direction

Willow has been off epinephrine for almost 24 hours and they have been monitoring how she has been doing. She has stayed in partial heart block (every other beat is going through) at 75ish beats per minute.  The doctors are less concerned with the numbers and more concerned with how she responds to and completes every day tasks. Because she is sleeping well, eating well, and is content, they are very happy with how she is doing. Both the attending doctor and her surgeon stopped in today and said that because the infection is responding so well to the antibiotics, they will only require 2 weeks antibiotics by IV and the rest can be oral. 2 weeks will be this coming Wednesday (Sept. 5). If her heart rate remains steady between then and now and she continues to do well with everyday tasks, they will discuss release dates on Wednesday. .
As much as the thought of going home makes me giddy, I am also very uneasy about this. We will go home, where there aren't monitors monitoring her heart rhythm all the time. And for a mother who already battles worrying about keeping my babies alive, this just adds to the anxiety I daily battle. And even though she is doing well in partial heart block, we have seen what she acts like out of heart block and it is better than we are seeing now.  I asked the doctor today what this will mean for Willow's life- what could I see with a daughter in partial heart block. She said 1. Her rhythm could still come back, 2. I could see nothing, there are lots of kids out there in partial heart block and you wouldn't know or 3. Around the age of 2-3 when she starts to get more active and run around more, she may get tired more easily and have to sit out. If that is the case, then we will come back in and get a pacemaker when her body is stronger. So that is where we are at. A very grey area. Please continue to pray that this won't be the case and Willow comes out of heart block soon into perfect sinus rhythm.

Thursday Update

I'm so sorry I haven't updated. I guess no news is semi-good news. The last few days have really just been the same- relatively calm with incremental progress. Willow is doing much better. She is eating better so they took the ng tube out and she is taking all her feedings by mouth. They have taken all tubes out except her pic line for her IV antibiotics. She smiles more and more every day. This morning when I came in she was the happiest I've ever seen her. She is getting physical therapy 3 times a week (starting yesterday) and even from yesterday the therapist can see she has gotten much stronger. Her infection is doing so much better. All of her numbers that indicate infection continue to down- trend and most of them are back to normal status. Tuesday night she was out of heart block in normal sinus rhythm (130bpm) from midnight to 5:45am , then from 6:30-7:30am. Then the rest of the day she was in partial heart block, with every other beat being communicated. Last night we came in after supper and around 9pm she was out of heart block again (130bpm) and stayed there until 6am this morning. She seems to be staying in normal rhythm longer and longer, but she still isn't staying there which is discouraging. Because she had such a good night, the doctors decreased her epinephrine to see if her heart rate would do ok without it (she's been on a small dose of epinephrine, or adrenaline, since Monday when she was off the pacemaker and having such low heart rates). Right now she is in partial heartblock and having rates as low as 50bpm. So I'm not sure what they will do with that. I think we were all hoping for better results. Cale still has a gnarly cough so we've tried  to keep him out of her room- but it's really hard to keep him entertained and for us to all be apart. Please continue to pray for a miracle. Believe me, I know it is hard to pray the same thing over and over, but we continue to need you to flood heaven with this plea. For her to stay out of heart block completely next time she comes out. If she comes out of heart block permanently it changes everything. We can come home on antibiotics.  Please pray for Cale's cough/cold to go away so it isn't so tricky for us to be together. Thanks for your continued prayers.

Monday Update

The last two days have been so chaotic I haven't updated. Yesterday (Sunday) we woke up to the news that Willow had been out of heart block, in sinus rhythm since 5am! We were elated! She was beating in perfect rhythm at 130bpm! We had gotten our miracle and we believed this was a game changer. At 8:30 am they took her chest tube out and when they checked her last pacemaker wire, it had come out on its own! It had puss around it so they believed that the infection around the heart had agitated it and pushed it out. They were not too concerned, though, because she didn't need it. Her heart was beating in perfect rhythm on its own... until around 9am when her heart went back into heart block and was in partial heart block (anywhere from 50-100bpm). Her heart rate was everywhere for the rest of the day and now they didn't have the back up pacemaker. AND, they can't put a pacemaker in until she is over her infection in 6 weeks. So they started her on a drug called Isopryl that increased heart rate. It increased her heart rate, but made her agitated. And since yesterday her heart rate has been all over the place. The Docs just took her off the Isopryl because they don't believe it was working very well and they are going to try putting her on epinephrine (adrenaline) which is another drug that increases heart rate. Most of the doctors were so encouraged that she was able to come out of heart block- that her heart is able to conduct it's own beat. They are also hopeful, since she is so variable in heart rate, that her heart is just trying to heal and that she will come back out of heart block into normal rhythm. They came in to talk to us today and it's so hard because it is just a waiting game. This is what they said- Best case scenario- Willow comes out of heart block and has a beautiful sinus rhythm. They watch her for a few days, then send us home to do the antibiotics at home. Worst case scenario- we stay here for 6 weeks on IV antibiotics and she has another open heart surgery to get an internal pacemaker put in at the end of the 6 weeks. What's hardest about the last few days is that Willow doesn't feel well. She cries, won't eat, throws up a lot of feedings, and hasn't smiled for days. Tim and I have worked our tails off to try to lay it all down. To try to give up control, but these days have been so stressful it's been a battle to remain calm and and a moment by moment decision to give it to God. Emotionally it's just really exhausting. Prayer requests:
1. For a miracle. Your prayers are being heard! She has been out of heart block once, she can do it again! It would be a game changer, and make EVERYTHING better for Willow.
2. For the infection to be treated effectively and easily with the antibiotics we are giving her.
3. That Willow would feel better so she could start eating well and smiling more.
4. For more progress than regress. That good news would become the trend rather than curveballs.
5. For Tim and I as we will have to make some big decisions as to what the next 6 weeks will look like for our family. If her heart conduction doesn't get better by the end of the week we will start making those decisions.

Saturday's Battle Cry

Thursday was a turning point personally for me.We were told to expect 7-10 days in the hospital, but that many babies with this surgery get out in 6 days. I think every day after 7 days, my desire to be home grew and grew. And with that tension came inner turmoil and deep wrestling with God. I really think since March (when Willow was born) I've had a victim mentality with God.What do my prayers matter? Why does He keep giving me such hard stuff? Why doesn't he save me? I stated in an earlier post that I felt like my fight and flight were both at odds, but when I really sit and reflect on it- it's probably just guilt/obligation and flight. I don't know how much fight I had in me with this one. Tim kept telling me, "You just need a good cry." But that's the thing... I couldn't cry and it was toxic. But when the doctors said it would be another 6 weeks and the term temporary or a week now looks like months- everything broke open. I cried a lot on Thursday and slowly a lot of what I was holding in was released. Tim gave me a pep talk at lunch, reassuring me this is not forever, that we will get through this, and that our trust is not that God will give us everything we ask, but that He is working it all together for our good. I have to stop bumming that Willow has Down Syndrome, stop bumming that this stay isn't going as planned and I have to start fighting. Fighting to find the good and be part of the good again.

I'm not much of an old testament type of girl, but lately I've been drawn to the warriors of the Bible. When we found out Willow was in heart block I was drawn to pray Joshua and the battle of Jericho over her heart conduction- that just like the walls of Jericho came tumbling down, so would whatever is blocking her heart conduction.This morning I read about Gideon and how God used him as an underdog to defeat the Midianites. In Judges 7, God says to Gideon, "You have too many men for me to deliver Midian into their hands. In order that Israel may not boast against me that her own strength has saved her announce now to the army 'Anyone who trembles with fear may turn back and leave Mt. Gilead'." I'll give you the abbreviated version of the story... Gideon's army was soon down to 300 and they were gong to fight an army of 135,000. And do know what they went into battle with? Trumpets and empty jars (with torches inside). Spoiler alert: in the end the underdog won because God saved them. But what really spoke to me this morning about this story is: 

1. That God uses underdogs. It displays His glory more than our own.

2. The weapons they used.Trumpets and empty jars (with torches inside)?! Today the trumpets represented praise and the empty jar represented me. I have nothing left but a small torch (a little bit of faith) left inside. But that those are my weapons that God is going to use for this battle.  We are definitely underdogs, but that's exactly where God wants us to display his glory. So today I am choosing to give God praise.

• Praise for the ordered chaos of this hospital stay. Where I can see  his miracles unfolding. Last night for 2 hours Willow was out of heart block! She has been in and out of partial heart block all day, but we are cautiously optimistic that God is doing a miracle.
• Praise that the bacteria found was Staph. There is a resistant and less resistant type and she has the less resistant type- the type that is easier to treat. We will not know the treatment till Monday or how long we will be here. But we are thankful this is easier to treat.
• Praise for my mom. She has been here the entire stay with us. Doing laundry, taking shifts so we could sleep or nap, grabbing rides for groceries. She has the most beautiful servant's heart that shines in times like these. She also has never doubted that Willow will come out of heart block. She is so faithful to Christ.
• Praise that my best friend, April is flying out this afternoon to be with us.
• Praise for CrossFit Sioux Falls who did a fundraiser for us yesterday in work outs. People worked hard out of love for us and when the 13 workouts in 13 hours were done, they all held hands and said a beautiful prayer for us.

This worship song is my weapon (trumpet) for the day.

More Hard News

I couldn't sleep last night. I'm worried about Willow. She just seems uncomfortable. So I got up and went in earlier than usual today. I happened to come in at the exact time the doctors were doing rounds. They said preliminary results from the fluid around the heart were in. There was bacteria, which usually means infection. They were surprised since her white blood cell count seemed normal and she didn't have a fever. They put the bacteria in a petri dish and watch it in the lab to see what kind of bacteria it is and what kind of antibiotic they should use. They said it is good we didn't put the pacemaker in because more than likely that would have been infected too and been worse. But it does put a pacemaker on hold until they are done with antibiotics and they are sure infection is gone. Then came the hard news. This probably means 6 weeks of IV antibiotics. They haven't given me anymore clarity on what that means for us, but I'm guessing we will stay here for 6 more weeks for antibiotics, if her heart is still in heart block they will then put the pacemaker in and we will be here for 3-5 more days. Again, we do not know this for sure until tomorrow night but that is the medical hunch of the doctor we spoke with this morning. They took her in at 11am for a pic line (a sedated procedure for long term IV). To say I am heartbroken is an understatement. I can't stop crying. Home has never seemed so far away. Last night cale woke up with a fever and cough which means he can't come to her room with us. It also means both my babies are sick, but mostly I can barely hold myself together today and three other people are depending on me. I don't even know what to tell you to pray anymore. Pray for peace, pray for a miracle, pray for restored health.

Willow is Out of the Cath Lab

The doc just came and spoke with us in the waiting room. The draining procedure went well. We should be able to see her in the next half hour. The liquid they drained out should be clearish, but hers was a bit milky. They sent it back to the lab. It could be normal, it could be an infection, or it could be chylo (a body fluid consisting of fat). Please pray that the results come back as normal. We will have preliminary results back tonight, but know for sure in 48 hours. They left a drainage tube in the chest to make sure no more fluid collects on the heart. If it does, they have to figure out why it is still collecting. Please pray that no more fluid collects on the heart. Lastly, pray that this procedure makes her feel better, makes her eat better, and gets her out of heart block.

Procedure will be done this Afternoon

Willow had a really hard night. She was up most of the night crying and won't eat. Those of you who know Willow, know that is NOT like her. She is such a laid back baby and sleeps through the night. The doctors were really concerned so they did an echo and chest xray this morning to rule things out. On the echo, they found fluid around the heart (Pericardial Effusion). It is most likely what is causing all of this so later this afternoon they are taking her into the cath lab and sedating her, then removing the fluid with a needle. There are certain risks involved, but for the most part they are hoping this solves what is making Willow so mad. Part of me is relieved there is something we can do. Part of me is hopeful that this is what God is using to take Willow out of heart block. There is a very small chance, but a chance that this is effecting her conduction. Part of me is stressed and angry, like "what else can go wrong?" So I'm asking for a lot of prayers today. Prayers that this procedure is successful, that there are no complications, and that it brings our Willow back. The Willow that is content, happy, eats well, and has regular conduction.

No Gains No Regression

Willow had a good night. They kept her pacemaker at 60 and she maintained above that all night even when she was sleeping. Every other beat her heart is conducting in sync. The docs are all encouraged that there was no regression and her body isn't responding any different. The pacemaker specialist came in last night at 9pm and spoke with us. He said that right now they are just watching and analyzing multiple factors to see if she does alright with partial heart block. They have leads on her measuring if her heart is getting enough oxygen to her body's vital organs. If her body still maintains and does well in partial heart block, they will send us home and monitor it. If she seems to be struggling in the next couple of days, they will put in a pacemaker. Even though yesterday was a miracle and even the mention of going home makes me giddy, I still have a troubled spirit. I don't want to worry when she isn't attached to monitors about how she is doing. I don't really know the risks or dangers in being in partial heart block (I'll have to ask the next time a doctor stops in). I completely trust the doctors who are experts in their field. They would not send us home with risks. I just want her to come out of heart block completely and soon. Please continue to pray that with us. Also, please pray that her eating goes better.  The doctors and nurses are all impressed with how well she eats, but it isn't back up to the volumes she did before and the last couple of days she seems to be fussy when doing it, which makes it stressful on us. Lastly, Willow does physical therapy and occupational therapy each week. She has made such gains and is getting stronger. But we are entering our third week in the hospital with her on her back and she doesn't feel as strong. Her neck strength and other gains she made seem to be regressing a bit and that makes us sad. Please pray for her strength to return and not be all lost. Thank you for your continued prayers.

No Surgery Today!

Ali and I came into Willow's room at 7AM this morning fully expecting a surgeon to be there waiting for us to sign consent forms for the pacemaker surgery today (We found out yesterday that her surgery was moved from 1pm to 9am).  When we walked in the room the nurse looked at us and said, "Well, she isn't going into the OR today."  We asked why and she said that she is showing more improvement and we are going to give her more time.  Currently, they have the external pacemaker set to 60 BPM and her heart is fully beating on its own at around 75 - 80 BPM!  This is the first time she has not needed a pacemaker to pace her ventricle and every other beat is being conducted.  She is still in second degree heart block but they are "cautiously optimistic."  On Saturday when she showed improvement it was not sustained so we are praying that this sticks and she can get out of heart block completely in the next couple of days.  This morning was a HUGE answer to prayer and we were very excited that we could delay the pacemaker surgery.  What a roller coaster we have been on.  Once more we are reminded that we are not in control and even though we think or expect something, God can have something completely different in mind. Thank you so much for your continued prayers and encouragement! Please continue to pray that she comes completely out of heart block, and soon. We are so ready to go home!

Hard news today

Willow's conduction didn't look as well today so they brought in the tech to take an EKG. The EP (the pacemaker doc) looked at the results and told us today that it looks like Willow is back into complete heart block. Surgery is still on for tomorrow (Monday) afternoon. It is the second surgery, so whenever the first one is over, Willow's will be done. They are guessing around 1pm. It will take 2 hours and then 5 days recovery. We are heartbroken and frustrated. It feels like yesterday was just a tease. We will not give up hope until the very moment they take her in for surgery that a miracle is possible. Please pray for a miracle- Willow's conduction to come fully back before surgery tomorrow. Please pray for our faith, our family, our stamina. We are having a hard day.

A Glimmer of Hope

So this morning the doctors did rounds and messed with the pacemaker like they have every morning since Willow's surgery. Except this morning there was an underlying beat (a sinus rhythm)! Willow still has a pace of 70 and they want it in the 120 range or higher, but they have some hope! The doctors upgraded her status from complete heart block to 2nd degree heart block. They turned her pacemaker down from 120 beats to 100 hoping some of her own beats would come through. And some are! Sometimes the pacemaker gives her a beat, but every once in awhile she does it on her own! They still won't send her home like this and she could still require a pacemaker if she can't get over 120 on her own, but there is hope and there is progress (something we haven't had this entire time). Please don't stop praying. If anything my hope is that this fuels you to pray more, because your prayers are being heard. Please pray for complete healing by Monday (before the surgery).
 I feel like this is the first time in 2 weeks that we have finally exhaled. Do you know what holding your breath for that long does to a person? It takes the life out of everything and everyone around you. I don't feel like I can fully rejoice until I know for sure that her heart is in good shape and we can go home without a pacemaker, but a small victory can go a long ways!

Friday's Update

Willow is still in heart block. We are still fighting to make it through the day. Tim and I have to give each other pep talks because we are so depressed. There is no other way to put it. Cale has overall been so good, but he is also starting to loose steam. Today he got diarrhea right outside the hospital and made a huge mess (I'll spare you the details)... I can't make this stuff up! He was crying because he was so embarrassed and I have such grief brain that I just stood there. I did not know what to do!! There was one point today that we were in Willow's hospital room and Cale was crying, Willow was crying, and I looked up at my mom and said, "Our family is falling apart." Please continue to pray for us. We are so in need. I just feel so lost and helpless. I have been continually reading this verse this week that I will leave you with:
"Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, for what is seen is temporary, but what is unseen is eternal."  2Corinthians 4:16-18

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;).

It's Thursday and I'm Weary

Today was hard on us. Not because anything necessarily happened to Willow. They have weaned her down, if not off of a lot of meds. They took the dressing permanently off her incision. The goal is for her to get off the ventilator tomorrow and possibly get her chest tube out. This will help a lot! They did what they call sprints where she was off the vent for an hour and she did great breathing on her own. Please pray that the vent and chest tube DO come out tomorrow (just because we hope for something, doesn't mean it will happen)! What I am struggling with today is her heart block. Her heart is still not communicating to fire at the right times and locations so she is still on the pacemaker. Her surgeon told us not to worry till Sunday about another open heart surgery, but I am worried. At this point in my life, I don't know how to not expect the worse possible scenario will happen to me. I have broken down crying multiple times thinking about another open heart surgery and a pacemaker. Please pray for my heart (and Tim's). She is also in a bay of beds just separated by curtains, not an individual room. Today, other kids in the bay had 4 sterile procedures done so no one could be in the bay for 2 hours while each procedure was preformed. So we felt like we really didn't and couldn't see her much. We are just 54 hours out from her surgery and it feels like we have been here forever. I miss home, I miss our friends, I miss my bed, I miss some sort of normalcy, but mostly...I miss Willow. Not sedated Willow, MY Willow. Please pray for courage, for renewed strength, for miracles... we need a miracle. Tomorrow is a new day and I pray that it brings new miracles. Please pray.

Wednesday's Prayer Requests

Willow had a good night. She was very restful (probably because of the drugs). Today they have weened most of her drugs down, and have turned her ventilator down. This morning they did an echo cardiogram of her heart to see how it was looking after surgery. The leak in her heart we put in our prayer request from yesterday has already gone from moderate to mild. Her surgeon was very happy about that - she even called it a home run! So our prayers are being heard!

Wednesday Prayer Requests:

1. They have continued to see if she can go without her pacemaker, but at this time the heart block is still present. This is our biggest prayer request as we're just 24 hours out from the surgery and we specifically want her heart to beat faster on its own and the chambers to communicate better. Again, if she isn't off the pacemaker in 7-10 days it means that she'll have another open heart surgery to put in a permanent pacemaker.

2. Pray that she would get off the ventilator in the next 24 hours, which is the doctor's goal as well.

3. She has fluid on her left lung and they commented that once that goes down her heart may beat better as well, so please pray that it goes away quickly.

4. The doctor said that she'll be more comfortable once the chest tube is out, so we're praying that happens soon.

Thank you for being our tribe and praying us through this time. You have no idea how much we appreciate each and every one of your prayers.

(I inserted a video from a few weeks ago below so we don't forget who we are praying for;) and to remind me there is a smiling baby in there, waiting to come back to me.)

Willow's Tuesday Surgery

My baby woke me up at 5am this morning, not the way most babies do. Most babies cry, my baby, was gently breathing next to me in the hotel, beckoning me to take her to a destination we were dreading, but a destination her body needed. We took her into pre op at 6 our time and sent her with a lovely anesthesiologist who had a British accent back to surgery at 7:15. He cradled her in his arms, swayed a little, and told us he would take good care of her...but I sent her away with a stranger. I won't say it was the hardest thing I've ever done, but it was up there. And what was supposed to be a 4 hour surgery took 7. When the Doctor came up she said that surgery went well, but it was the most complex AVSD surgery that she has ever done. I won't confuse you or myself with medical terms, but Willow's heart didn't look like a child with Down Syndrome normally does. The good news is that biggest hole was repaired beautifully and Dr. Romano felt very good about the surgery. We are so thankful we are here and she is our doctor. She has more than proven she is the best there is. We are over a big hump, but we are not out of the woods. The next few days are critical. So here are today's prayer requests:

1.There is a little Mitral Valve Regurgitation - or leakage, but it was very mild and they are hopeful it will repair itself and there will be no subsequent surgeries- Pray for that. That all the areas of the heart that can repair themselves will. She has a tiny hole left in her VSD that the Dr. thinks will heal over time so pray that God will seal up any leaks and this is the last heart surgery she will ever need.

2. Because her heart surgery took longer than expected and she was on bypass so long there is a little more swelling and it's just taking a little bit longer for her body to bounce back. Pray for a restful night so that her body can start to repair itself. This is partly why she is still on a ventilator. Pray that she is doing well enough that she can get off the vent tomorrow!

3. THIS IS MY BIGGEST PRAYER REQUEST TONIGHT... it is common for the neural connections to be blocked after this surgery- called a heart block. It's because the surgeons are working so close to where the connectivity is. Willow currently has a heart block and is on an external pace maker. The Doctor is confident that her heart will start to regulate itself in the next 48 hours after the swelling goes down, but if it doesn't in the next 7 days, they will have to do open heart surgery again to insert an internal pace maker. This is heart breaking. So please pray her heart starts to regulate itself.

Thank you for today. Thank you for flooding the gates of heaven with your prayers and showering us with love and encouragement. Many of you fasted and prayed and I can never express how much that touched our heart. Even though the surgery is done, please continue to pray. Willow's precious little body is still in need of a lot of healing.

Monday in Ann Arbor

We made it to Ann Arbor on Sunday thanks to a precious program called Angel Flights. It is a program that consists of pilots with private jets that donate their talents and resources to fly children to their treatment across the nation. On Sunday at 9, Kirk, a pilot from Wisconsin, flew in to Sioux Falls to pick us up and flew us to Ann Arbor. The flight took just under 3 hours. When he dropped us off he told us him and his wife Becky would pray us through this. It was SUCH a huge blessing to us and Cale loved the flight!
Today (Monday) was full of pre operation appointments. We started the day with a chest X-ray, she then had a sedated echocardiogram (it was an oral sedation, much like a Benadryl to make her sleep so they could have precise pictures of her heart before surgery), an EKG, we met with the surgeon, were given a tour of the hospital, and ended with labs. We were at the hospital from 9am to 3pm. It was a long day. Labs were the hardest part. For some reason they have always had such a hard time finding Willow's little veins. It took them an hour (with her crying for 40 minutes of it). They poked each arm 3 times, each hand 3 times, and her heal once. So you could pray they find veins better the rest of the time we are here.

After talking with the Surgeon today the following are our specific additional prayer requests for her surgery tomorrow:
1. Surgery will be at 7:30am. We have to be at the hospital by 6:15. The surgery will take 4 hours but we probably won't be able to see her until 12:30. The surgeon's name is Dr. Romano. She is the best at what she does and we are so thankful she is our surgeon. Pray for the surgeon and the whole team. We want them on their A game!

2. One of the main reasons this surgery has to be repeated down the road is because of valves leaking. Pray that Willow's valves will never leak and that we won't have to ever have heart surgery again.

3. There is a 10-15% chance that the electrical current in her heart could be cut, causing a condition called heart block which would result in her having to have a pace maker permanently put in. Please pray against this risk.

4. It is a big deal for her to get off the vent the first day. That is the goal. Please pray that her pressures go down so she can get off the vent.

5. Lastly, please pray for our family. It's just so heartbreaking to see your child hurting in any way. I am a nervous wreck.

Thank you so much for all the support and encouragement over the last few days! We really have the best support system!

Willow Grace

I wanted to catch some of you up to date on where we are at now. I know I have been MIA in my blogging, but as you can see I am back at it and have made a few changes to the look. We were due with our third child on April 16, 2018. On March 20, I went in for my 36 week check up.  I was measuring at 33 weeks and I had lost a pound, so my Midwife sent me to get an ultrasound just to be safe. At my ultrasound they found that my baby girl was breach, that the placenta was slowly doing its job less and less, and that I was a bit low in amniotic fluid. So the doctor decided they would have me spend the night, give me steroids for 24 hours to make the baby's lungs stronger, and then do a c-section. This all came as a surprise but we had no choice but to roll with it. We spent the night in the hospital and the next day they started to get worried after an ultrasound at the movement and amniotic fluid and took me in for a c-section immediately. The spinal tap did not take, I was still moving my legs and had full sensation, so they put me under. When I came to, the nurse and my husband informed me that our baby girl, Willow Grace Ter Horst was born with Down Syndrome (ironically on World Down Syndrome Day 3-21). We had no idea prior to her birth of this diagnosis. I would like to tell you that I cried, then took it with grace, but that is not the story. We were devastated. Tim and I went to a very deep place of grieving. Life has seemed so unfair. I felt like when Quinn died I was in this pit of grief and I fought tooth and nail to seek Christ, to choose joy, to climb out, only to be flung back into the pit and I did not want to be here again. We, once again, found ourselves grieving the loss of hopes and dreams we had for our daughter. Before the day was done, a pediatric cardiologist came to our room and informed us that Willow had a significant hole in her heart that would require open heart surgery. South Dakota didn't have a pediatric cardiologist surgeon that could do this surgery so they recommended at 4-6 months of age we would do the surgery in Ann Arbor, MI. Needless to say it was just a lot to process in one day.

Fast forward 4 months. Willow is such a good baby. She sleeps 8 hours through the night- every night, she is content, she eats like a champ, she rolls over from tummy to back and back to tummy like it is no big deal, she is smiling, she is cooing, she shows no signs of heart failure, but she still has a hole in her heart. We are in a better place then right after she was born, but we are still grieving and processing what this diagnosis means for her life and ours. And Sunday (at 9am) we fly to Ann Arbor for her open heart surgery which is on Tuesday. I am writing this as an update, but also as a plea for prayer. The following are my prayer requests for our dear friends, family, and prayer warriors:

1. For a successful surgery. This surgery has a 98% success rate and she should only need one surgery, but our prayer is that she will not need another. The surgery is to repair an AV Canal or AVS Defect which means the surgeon (her name is Dr. Romano) will have to patch a significant hole in the middle of Willow's heart. The surgery is scheduled for Tuesday August 7 at 7:30 am and should take 4 hours.
2. For Recovery. Willow will be in ICU for 24-72 hours and the hospital for 7-10 days, but could be less if everything goes great. We have been hopeful thinkers and have scheduled a return flight for Monday August 13...6 days after surgery. We can always move it back, but if you want to pray specifically- pray that Willow would recover beautifully and miraculously and be released by Monday so we could come home.
3. For Cale. Tim's parents, my parents, and my sister are all coming, but it is still a lot for a 3 year old to process and not have his parents full attention. He could either rise to the occasion or be a pill. Pray that he sleeps and acts better than we could have imagined.
4. Pray for Tim and I. I have been an emotional mess this week. I feel like I'm constantly on the verge of tears or the verge of being short and snappy. I am overwhelmed with uprooting my family for a week or two, with the unknown, with the thought of my beautiful baby being cut open, with school starting for me 9 days after surgery, with Willow being the same age as Quinn as she passed away. I am still dealing with some PTSD.
Thank you. Thank you from the bottom of my heart for praying for us, for encouraging us, and for joining us on this crazy journey. I will use this blog to keep you updated on how surgery and recovery are going.

Quinncidence Year 6

I woke up yesterday and laid in the stillness of our dark bedroom reflecting on where I was 6 years ago. I had gone into labor at 11:45 on a Saturday night and didn't have Quinn till 4:22 on Monday morning. Like this year, it was the weekend of a time change. I laid in bed in solemn silence thinking about would could have been, but I soon heard the pitter patter of little feet down the hall... my son bringing in his stuffed animals to lay with us. He crawls into bed giving each of us a stuffed animal, then pointing to the window pleading, "Mommy, open. Let in the light." I smirk, roll out of bed and open the shade. Because that is what this life is all about, moments of darkness and sadness and then moments where you need to get up and let the light in. Today is about that sentiment exactly. I have such a heavy heart missing my baby girl while 35 weeks pregnant carrying another little girl. Booker T. Washington once said, "If you want to lift yourself up, lift someone else up." So that is what I will do today and ask you to join me in lifting up another human being today. And I will forever be humbly grateful for all of you who have continued with us on this journey. Continue to pray for us as we bring another little girl into this world and wade through all the emotions and worry that come a long with starting this journey again.