tag:blogger.com,1999:blog-3844036820394524352024-03-13T10:10:34.403-07:00Oh My Dear OneOh My Dear One
Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.comBlogger71125tag:blogger.com,1999:blog-384403682039452435.post-80104042116351395232022-03-08T11:36:00.002-08:002022-03-08T11:37:32.592-08:00Celebrating Quinn year 9 <p> I was talking with a girlfriend this past weekend about Quinn and all we've walked through the past 10 years and she said, "Ali, I couldn't do it. It would've destroyed me." And my response is, "Yes, you could! You never know how much you are capable of until you have to do it." I mean, it did destroy me! It would temporarily destroy any emotionally healthy human! But then you have a decision to make. You have to shoos your hard. I saw this quote recently....</p><p>"Marriage is Hard. So is Divorce. Choose your hard.</p><p>Obesity os Hard. Being Fit is Hard. Choose your hard.</p><p>Being in debt is Hard. Being financially disciplined is Hard. Choose your hard.</p><p>Communication is Hard. Not communicating is Hard. Choose your hard.</p><p>Life will never be easy. It will always be hard. But we can choose our hard. Choose wisely."</p><p><br /></p><p>See, picking up the broken/destroyed pieces of our former self daily and choosing to put one foot in front of the other was hard. Choosing to do Random Acts of Kindness on our Deceased Daughter's bday each year is hard. Choosing to seek the heart of God with a broken hear is hard. But you know what else is hard? Becoming a bitter/worse version of yourself. Staying in bed crying the entire day. Being without God, without hope. Those are all hard too. Life is hard no matter what. To me it was a clear choice. I know the life I want to live and I'm not going to "let life happen to me", I'm going to play an active role in this life I've been given.</p><p>I know it probably seems overwhelming & I will be the first to tell you I had so many moments of being overwhelmed. It seemed too large- like a mountain standing in front of me. I've always loved the analogy of moving mountains and wondered what it would look like for God to move mountains. But in the process I have a different perspective on mountain moving. I think very rarely are mountains moved all at once. Do you know how you move mountains? One stone at a time. Being faithful in the small acts.</p><p>"Truly I tell you, if you have faith as small as a mustard seed you can say to this mountain, 'Move from here to there', and it will move. Nothing will be impossible for you." -Matthew 17:20</p><p>So what does this journey look like 10 years later? I'm still moving stones, but they're not as heavy as they used to be. And if you've ever did a Random Act of Kindness in the last 10 years in Quinn's name you've taken some of the stones too, lessening the load. You continue to be my mountain movers.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEitEr9rQheUefROTFSFZaaUMVxynYs9GF3V3L_xVyQYgiELXY5MbFebDAtLTu8yviYjvoX9Vy2WN-GKyaHM1pWxJDNSg7Twhmtvfs0ZsvDmuFi68E_gX9yAXiZFfvE2z7Z5Csh66NgpQDXl1xSsp0rDTxKOcJsAoRA42CKLKs-PVFJovmA2xOyQdvVU=s1080" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEitEr9rQheUefROTFSFZaaUMVxynYs9GF3V3L_xVyQYgiELXY5MbFebDAtLTu8yviYjvoX9Vy2WN-GKyaHM1pWxJDNSg7Twhmtvfs0ZsvDmuFi68E_gX9yAXiZFfvE2z7Z5Csh66NgpQDXl1xSsp0rDTxKOcJsAoRA42CKLKs-PVFJovmA2xOyQdvVU=s320" width="320" /></a></div><br /><p><br /></p>Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com0tag:blogger.com,1999:blog-384403682039452435.post-89704586827893305122020-03-11T07:01:00.001-07:002020-03-11T10:23:59.219-07:00Celebrate Quinncidence Year 8<span style="background-color: #666666; color: white; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">Ever since I can remember, I’ve been a story teller. The best stories are the ones that feel like all hope is lost, where there is so much to overcome and yet the character perseveres. I hope that’s what you take away from my story. We had our first child March 12, 2012, a beautiful baby girl named Quinn. On July 21, 2012, just shy of 5 months old our daughter passed away of SIDS. SIDS stands for Sudden Infant Death and really could just be called IDK for infant death. There was no rhyme or reason and it all just felt so random and senseless. It was the part of my story where my world went dark. And when March 12, 2013 came around I was scared to death to face the day, but I was more scared that my daughter’s memory would be lost, that years from now, no one would know who Quinn Terhorst was. It was also where my story started to take a turn, the part where the main character decides to rise above the tragedy and make beauty from the ashes. My husband and I decided that in order to honor the life of our daughter, on her birthday every year we would do random acts of kindness for others and take the money we would’ve spent on her and bless others. That way every year someone’s life would be better because my daughter lived. We called this day “Celebrate Quinncidence”, believing that nothing is random. Every year so many of you have joined us and showed a beautiful display of kindness in honor of my daughter. We would be honored if you joined us on Thursday March 12th in doing random acts of kindness. My other hope is that you would take away from this, that no matter how hard life gets, you have a choice to rise above. That we would be a tribe of overcomers, making beauty out of the ashes life gives us.</span><br />
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com0tag:blogger.com,1999:blog-384403682039452435.post-68875940798867078742019-03-05T19:53:00.001-08:002019-03-05T19:53:31.189-08:00Celebrate Quinncidence Year 7Some of you have been following us since the beginning of the blog, some of you are new so I thought I would take this opportunity to tell you about another huge part of our story. March 12 of 2012 our first daughter, Quinn, was born. She was amazing and it was a time full of giddiness and gratefulness for answered prayers, but we were also trying to navigate through this new parent business, so it was also hard. On July 21st, at 4 1/2 months old, she passed away of SIDS. One moment we were putting her to bed, 45 minutes later we were in an emergency room having to say our goodbyes. A part of our lives ended that day and to say we were devastated doesn't begin to describe what we experienced those first few years. So when what would have been Quinn's first birthday rolled around, we really struggled with how to approach this hard day. One night I told Tim that I think the only way we could make it through the day is by not making about ourselves and our grief, but by helping others. What if we did random acts of kindness and took the money we would have spent on cake, balloons, and birthday gifts and spend it on others all in our daughter's name? One of my biggest fears was that because she was only on this earth for less than 5 months, people would forget about her. I never wanted her to be forgotten. So this was a way to remember her each year. It was one way I could keep her memory alive. So we called it Celebrate Quinncidence and invited our friends and family to join us, knowing that they were grieving too. I also prayed about it and decided to be vulnerable with this precious part of our journey so I invited my high school students at Washington High School to join me in random acts of kindness. I wanted my students to learn something more valuable than anything I could teach them in the classroom... that life gives us really hard things, most of them we can't control. And I think we get so hung up on the hard things that it's paralyzing. But see, we have it all wrong, the heart of the story isn't about the struggles, it's about what we choose to do with them. And that first year was beyond anything that I could have ever dreamed. The way my daughter was honored all over my school, my city, my hometown, and so so many random places around the world was breathtaking. We have continued to do it every year. This year would have been Quinn's 7th birthday and we would continue to be honored if you joined us. Take this week to pray about who you can bless. That God would bring someone into your path that needs something that they can't repay you for. And that you would be bold enough to say, "yes".Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com0tag:blogger.com,1999:blog-384403682039452435.post-5401606296673262062019-02-19T20:02:00.000-08:002019-02-19T20:02:53.405-08:00Today's Cardiologist AppointmentToday was a good day. Full of reports of improvement and answered prayers! We started our day with an EKG and echo- on both we saw many sinus (regular rhythm) beats! At some points 128bpm! Her 24 hour heart monitor results came back and all her numbers are up by almost 20bpm! Last time her lowest was 39bpm - this time it was mid 50s!. Last time her average bpm was 56- this time it was 78bpm! Last time her highest bpm was 78- this time it was in the lower 100s! Willow also came home from Ann Arbor with a Mitral Valve that had severe leaking and could require future surgery if there were no improvements. Today we were told that the leakage is now only deemed as mild! Because of this, the Doctor took Willow off Captopril- a heart med we believed would be indefinite!! Willow was also sent home with Pulmonary Hypertension but it was believed that her pressures would come down with time. Her pressures in her lungs are supposed to be around 25 and she was at 59 when we came home from Ann Arbor- today they were between 26-30, so she is close to getting off of her Pulmonary Hypertension meds too! Our cardiologist said willow's heart repair still looks beautiful and her heart is functioning well. The average heart's function is 65% and hers was 65%! Over and over the doctor kept saying, "This is just fantastic!" We still don't know what the future holds- future surgeries or pacemakers are still on the table. Time will tell if her heart continues to get better. But today surgery was not mentioned once and I'll take that as a victory! Thank you so much for your continued prayers! We definitely know that today wouldn't have been possible without prayer and an even bigger God who answers prayer! As of now, Willow won't have another heart appointment till the beginning of June!<br />
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<br />Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com5tag:blogger.com,1999:blog-384403682039452435.post-70886470258930896742019-02-12T09:52:00.002-08:002019-02-12T09:57:55.398-08:00Since we've been home...We are now 6 months out from Willow's open heart surgery. Many of you have been asking for updates and I really keep intending to post something, I guess I just don't really know how to update. Home has been so good... Tim and I went right back to work two days after our return, Willow has not returned to daycare, but has been graciously taken care of by family and friends that have given many hours of their time to love on her. Willow is doing great. She is eating well and gaining weight, sleeping well, and so content and happy. We have have a physical therapist that comes in once a week and an occupational therapist that comes in every other week alternating with speech therapy every other week. Really, if we could just stay home, life would be really good. BUT we have a lot of doctor appointments and I feel like the doctor appointments, while we have great doctors, always leave us feeling unsettled. There are a lot of warnings, "She is at higher risk for this" , "Look out for that." I know these professionals are just doing their job, but I never feel encouraged, or hopeful. The biggest health concern right now is that Willow is still in partial heart block. I am by no means a medical professional, but the best way I can describe heart block is that we have a top and bottom chamber to the heart. The top chamber sends a signal to the bottom chamber to beat in unison (lub dub, lub dub). With Willow's surgery being so close to the node that conducts these signals there has been some sort of damage. It seems that every other beat is being conducted (lub, lub dub, lub, lub dub). Most infants Willow's age are at 130bpm, Willow is at 60bpm. We met with a new doctor that specifically looks at the conduction of hearts around Thanksgiving. He wanted to put in a pacemaker as soon as possible, not because it is an emergency, but almost as an insurance plan. When they sent the info to our Ann Arbor surgeons and specialists they said they had the luxury of seeing her at this rate for 5 weeks and feel confident in waiting, specifically for her to get bigger but I think they believe that a pacemaker is a strong possibility in the near future. It is so hard living in the inbetween. So many ask us how Willow is doing and honestly, if you were with her for a day you would be so impressed. She is a delight, babbling up a storm, she smiles for everyone, she is almost sitting up (Does it for a minute at a time before tipping over), almost crawling, eating baby food like a champ and taking a bottle with ease, and gaining weight. If we just focus on that, there is so much to be thankful for. BUT every doctor appointment we get sucked back into the worry. Worry of opening her back up, of going back to Ann Arbor, worry of what her heart is doing behind the scenes. So here's my plea to my prayer warriors out there- Please pray for a miracle.She has a holter monitor put on today and 4 which will monitor her the next 24 hours- we will find out the results at her next cardiologist appointment a week from today (Feb. 19th). Will you join me in prayer that the monitor reveals that she is out of partial heart block, that she is at normal rhythm at 130bpm? If that happened we would know it is only because of God and not of anything we did. Will you pray for Tim and I? We are always an emotional wreck the 24hours of monitor and the week of waiting for the results. The blinders go on and we forget how well she is doing and are reminded of her diagnosis and all the health concerns that come along with Down Syndrome. We have a month full of doctors appointments (hearing checks, vision checks, etc.). Each of them take us down a rabbit hole of concern for her future. It is hard on us individually so it is so hard for us to be there for each other as a couple. Please continue to pray for our marriage, mostly because I want to always be proactive and aware of the strains this places on any marriage. Thank you, thank you so much for being patient with us, for partnering with us, and for praying for us!<br />
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<br />Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com2tag:blogger.com,1999:blog-384403682039452435.post-81193214063991671142018-09-09T21:14:00.006-07:002018-09-09T21:14:54.128-07:00We 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.<br />
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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.</div>
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<br />Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com5tag:blogger.com,1999:blog-384403682039452435.post-37761822954625390952018-09-07T13:57:00.000-07:002018-09-07T13:57:12.933-07:00We 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!Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com1tag:blogger.com,1999:blog-384403682039452435.post-38432362029267210752018-09-06T19:41:00.000-07:002018-09-06T19:41:46.800-07:00Thursday- A different challenge to coming homeFor 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!Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com7tag:blogger.com,1999:blog-384403682039452435.post-17558261218567517602018-09-04T14:48:00.001-07:002018-09-04T14:48:51.598-07:00Tuesday-An End in SightWe 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!Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com5tag:blogger.com,1999:blog-384403682039452435.post-26058740878560256302018-09-03T09:24:00.000-07:002018-09-03T09:28:42.105-07:00We Need Big Prayers for Tomorrow's EchoWillow 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:<br />
1. They are concerned about the pressures in her lungs and pulmonary hypertension. Please pray the pressures go back down.<br />
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.<br />
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.<br />
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.<br />
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<span id="goog_1409955320"></span><span id="goog_1409955321"></span><br />Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com5tag:blogger.com,1999:blog-384403682039452435.post-86232066317263058972018-08-31T15:44:00.000-07:002018-08-31T15:44:40.273-07:00Friday: A Step in the Right DirectionWillow 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. .<br />
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.<br />
<br />Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com5tag:blogger.com,1999:blog-384403682039452435.post-44158799594754293862018-08-30T09:05:00.001-07:002018-08-30T09:05:37.690-07:00Thursday UpdateI'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.<br />
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<br />Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com7tag:blogger.com,1999:blog-384403682039452435.post-39674061100028410662018-08-27T15:05:00.000-07:002018-08-27T15:05:36.963-07:00Monday UpdateThe 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:<br />
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.<br />
2. For the infection to be treated effectively and easily with the antibiotics we are giving her.<br />
3. That Willow would feel better so she could start eating well and smiling more.<br />
4. For more progress than regress. That good news would become the trend rather than curveballs.<br />
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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com8tag:blogger.com,1999:blog-384403682039452435.post-32559930832232429292018-08-25T10:22:00.000-07:002018-08-25T10:22:14.023-07:00Saturday's Battle CryThursday 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.<div>
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: </div>
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1. That God uses underdogs. It displays His glory more than our own.</div>
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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.</div>
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<li>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.</li>
<li>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.</li>
<li>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.</li>
<li>Praise that my best friend, April is flying out this afternoon to be with us.</li>
<li>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.</li>
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This worship song is my weapon (trumpet) for the day.</div>
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Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com9tag:blogger.com,1999:blog-384403682039452435.post-39952874600157608472018-08-23T10:03:00.000-07:002018-08-23T10:03:47.894-07:00More Hard NewsI 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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com14tag:blogger.com,1999:blog-384403682039452435.post-31198566883371336472018-08-22T13:38:00.001-07:002018-08-22T13:38:37.058-07:00Willow is Out of the Cath LabThe 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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com3tag:blogger.com,1999:blog-384403682039452435.post-25991790775346300272018-08-22T10:45:00.001-07:002018-08-22T10:45:17.962-07:00Procedure will be done this AfternoonWillow 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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com5tag:blogger.com,1999:blog-384403682039452435.post-60022354492759916712018-08-21T08:02:00.001-07:002018-08-21T08:02:10.366-07:00No Gains No RegressionWillow 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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com4tag:blogger.com,1999:blog-384403682039452435.post-29089773703824856442018-08-20T06:46:00.001-07:002018-08-20T06:46:19.664-07:00No 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!Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com11tag:blogger.com,1999:blog-384403682039452435.post-63526182979483345032018-08-19T12:37:00.001-07:002018-08-19T12:37:17.347-07:00Hard news todayWillow'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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com6tag:blogger.com,1999:blog-384403682039452435.post-17308242025133784582018-08-18T12:16:00.001-07:002018-08-18T12:16:48.227-07:00A Glimmer of HopeSo 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).<br />
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!Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com12tag:blogger.com,1999:blog-384403682039452435.post-38867889861783092018-08-17T18:21:00.000-07:002018-08-17T18:21:47.751-07:00Friday's UpdateWillow 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:<br />
"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 4:16-18Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com5tag:blogger.com,1999:blog-384403682039452435.post-89127305717413735182018-08-16T19:05:00.000-07:002018-08-16T19:05:58.312-07:00Thursday's UpdateNo 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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com11tag:blogger.com,1999:blog-384403682039452435.post-26287896277053903972018-08-15T15:28:00.002-07:002018-08-15T15:28:50.448-07:00Wednesday and WaitingIt 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.<br />
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<br />Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com7tag:blogger.com,1999:blog-384403682039452435.post-57749063894238050862018-08-14T20:32:00.000-07:002018-08-14T20:32:07.315-07:00 Doctor is recommending more time in hopes that heart block goes awayDr. 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.Alihttp://www.blogger.com/profile/16927458804654119816noreply@blogger.com4