Thursday, August 9, 2018
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, August 8, 2018
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.)
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.)
Tuesday, August 7, 2018
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.
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, August 6, 2018
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!
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!
Friday, August 3, 2018
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.
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.
Monday, March 12, 2018
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.
Monday, March 6, 2017
Celebrating Quinn's Life, Year 5
We sang a song at church by Elevation worship a few weeks ago called "Resurrecting" that has really been on repeat in my head ever since. I keep coming back to the powerful lyric, "The resurrected king, is resurrecting me." I think the reason that I liked it so much is because it really resonates with me this year. There was a time in life not too long ago when I felt as if I were in the wilderness. I was in a dark place,the desert of life if you will. These 40 days of Lenton season has really made me appreciate the 40 years that the Israelites were in the desert and the 40 days that Jesus was in the wilderness. But I feel like God has slowly brought be out of that season and ushered me into a new season. A season of coming alive again. He is resurrecting this life that I thought I had lost and putting a new song in my heart. I love this perspective by Cynthia Occelli when she says, "For a seed to achieve its greatest expression, it must come completely undone. The shell cracks, its insides come out and everything changes. To someone who doesn't understand growth, it would look like complete destruction." Well, my shell broke, you all read my insides coming out as I poured out my heart and soul on these pages, and my life felt like complete destruction, and yet I can finally feel new growth, I can feel my life breaking through that dark soil into the light and it is miraculous. Something that only someone who has been there would know. What a beautiful picture in this Easter season of my resurrected king, resurrecting this life that seemed impossible of restoration.
You see the root of this Easter story is that Christ didn't stay dead. For a very long time I believed that trusting God, meant trusting that nothing bad was going to happen. If I trust Him with my child it means I trust that He will keep him/her safe. When my child has something happen to them, then that trust is dashed. But I am beginning to see that I am trusting the wrong thing. The Easter story is revealing to me that one of the greatest miracles in the Bible is the resurrection of Christ and the same God who rose Christ from the depths of despair is the same God we serve. Our trust should not be in this life being perfect, our trust should be that no matter how dark life gets that we serve a God of resurrection. "Joys are always on their way to us," writes Amy Carmichael. "They are always traveling to us through the darkness of the night. There is never a night when they are not coming."
March 12th is this Sunday and if you knew where I was at 4 years ago on this date and could see the healing that has taken place in those 4 years you would say it is miraculous. You would join me in agreeance that the resurrected king is resurrected me. In years past, doing random acts of kindness on Quinn's birthday were as much to get me through the day as they were to celebrate Quinn's life. Tim and I were talking the other day and we both agreed that this year the random acts of kindness will simply be to honor her and her life, we don't need them to get through this day anymore. You will never hear me say that I don't wish we were really celebrating Quinn's birthday with our blonde haired, blue eyed, 5 year old, you will never hear me say that what happened was ok, but if you listen close enough to the beating of my heart you will hear that it is well with my soul and I have come to peace with my life. And that faint peace flowing through my veins is a miracle that resonates with the Easter story. I tell you this because I don't know where you are at in life or what this life has in store for you, but I can personally tell you that I serve a Christ who didn't stay in the grave and will continue to, "raise you from the ashes of defeat."
I say all of this to catch you up as to where we are in year five. We still would be more than honored for you to join us again this year in celebrating Quinn's life and keeping her memory alive through random acts of kindness. Whether we are in a dark place or a place of celebration, it still continues to humble us as a family to hear that Quinn's life is not forgotten and that because she lived people were blessed. Thank you, from the bottom of our hearts, thank you. You will never know how much your acts big and small mean to us as a family.
You see the root of this Easter story is that Christ didn't stay dead. For a very long time I believed that trusting God, meant trusting that nothing bad was going to happen. If I trust Him with my child it means I trust that He will keep him/her safe. When my child has something happen to them, then that trust is dashed. But I am beginning to see that I am trusting the wrong thing. The Easter story is revealing to me that one of the greatest miracles in the Bible is the resurrection of Christ and the same God who rose Christ from the depths of despair is the same God we serve. Our trust should not be in this life being perfect, our trust should be that no matter how dark life gets that we serve a God of resurrection. "Joys are always on their way to us," writes Amy Carmichael. "They are always traveling to us through the darkness of the night. There is never a night when they are not coming."
March 12th is this Sunday and if you knew where I was at 4 years ago on this date and could see the healing that has taken place in those 4 years you would say it is miraculous. You would join me in agreeance that the resurrected king is resurrected me. In years past, doing random acts of kindness on Quinn's birthday were as much to get me through the day as they were to celebrate Quinn's life. Tim and I were talking the other day and we both agreed that this year the random acts of kindness will simply be to honor her and her life, we don't need them to get through this day anymore. You will never hear me say that I don't wish we were really celebrating Quinn's birthday with our blonde haired, blue eyed, 5 year old, you will never hear me say that what happened was ok, but if you listen close enough to the beating of my heart you will hear that it is well with my soul and I have come to peace with my life. And that faint peace flowing through my veins is a miracle that resonates with the Easter story. I tell you this because I don't know where you are at in life or what this life has in store for you, but I can personally tell you that I serve a Christ who didn't stay in the grave and will continue to, "raise you from the ashes of defeat."
I say all of this to catch you up as to where we are in year five. We still would be more than honored for you to join us again this year in celebrating Quinn's life and keeping her memory alive through random acts of kindness. Whether we are in a dark place or a place of celebration, it still continues to humble us as a family to hear that Quinn's life is not forgotten and that because she lived people were blessed. Thank you, from the bottom of our hearts, thank you. You will never know how much your acts big and small mean to us as a family.
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