Claire’s Story

Site created on July 11, 2022

Hi Everyone! Heres a little overview on Claires story up to her posts started on here! buckle up for the ride!
October 18th 2021 we had our 20wk fetal scans and it showed Claires heart defect which is called Tetrology of Fallot with severe pulmonay stenosis and a right coronary anomaly. This required us to have monthly ultrasounds and monitoring for the remainder of the pregnancy. We had to travel to the main hospital in Fargo to meet with maternal fetal medicine as well as the pediatric cardiologist to preform in depth scans of her growth and development, the placenta, as well as extensive pictures and mesurements of her heart. In January when we were at 35 weeks Claire started declining and we almost had an emergency induction. We then had to go to weekly monitoring and be prepared to be induced that day if she had declined more. By the grace of God we were able to hold off till 38 weeks. When I was scheduled to induce at full term. We had to deliver and labor in Fargo. The option to go into labor naturally wasnt an option becuase of how critical she could be when she arrived. Our hospital near us isnt equiped to handle such a critcal case. Which meant I had to be very careful not to go into labor. Fargo is an hour and a half away. We even considered having to stay up there in case I did go into labor the closer I got to my due date. We had one labor scare on my birthday January 17th but it turned out to be false labor. Just really severe braxton hicks. I was able to deliver Claire normally with an epidural. She came out pink, crying and perfect. Which was very emotional for us as we were told that there was a substantial chance she could come out blue and needing lots of help to breathe and get enough oxygen and again if she struggled too much and required surgery imediately she would be flown out to the University of Minnesota for emergency open heart surgery. Luckily our little warrior proved to us again how much of a fighter she was. She was a level 2 NICU baby out of 3 levels of intensive care. We were there for 3 days and she had progressed and thrived enough for us to go home. She was born at 5lbs 6oz and we left the hospital with her weighing 4lbs 15oz. Claire has continued to be her best self doing as well as she can with her heart. We have monthly scans in Fargo with her Pediatric Cardiologist Dr. Miranda and our goal was to make it to 6 months before she needed her surgery. We also have a fabulous home health nurse, Becca, that comes weekly to check Claires height, weight, oxygen sats and development milestones. As well as help me deal with postpartum stuff and conquering Post Patrum Depression and staying on top of my health and self care through this too. She has been a great resource. Claire has never had restrictions on what she could or couldnt do and she has been able to act like and be like a normal baby. Its very easy to forget she isnt a normal baby some days. So a little about her condition and what it means. Tetrology of Fallot is a series of four heart defects. The first is a large hole called a Ventricular Septal Defect (VSD) in between The two bottom chambers (the ventricles) of her heart. The wall the splits the ventricles is called the septum. This hole also extends into the actual heart tissue a little bit too. This VSD causes oxygenated blood (red blood) and deoxygenated blood (blue blood) to mix in the ventricles. The second is her Aorta is enlarged and not in the proper place. It is shifted to be in the center of the heart instead of being on the left side of her heart. The aorta is supposed to pump oxygenated blood (red blood) to her body from her left ventricle. But her aorta takes blood from both of her ventricles instead of just the left ventricle. In fact her Aorta takes blood more from the right ventricle than the left. We know this because her scans show that the blood shunts (moves) from the left ventricle to the right ventricle through the hole. This has also caused a bit of a controversy whether her condition is tetrology of fallot or if it is Double Outlet Right Ventricle tetrology of fallot type. The only substantial difference between these two Congenital Heart Defects is where the Aorta sits and what ventricle it prominently comes out of and takes blood from. It really doesnt matter what her diagnosis is for surgery that detail doesnt change what happens for surgery. So what they really call her condition is just a technicality. The more oxygenated blood that goes to her body the more pink she will be and thats why she is considered Pink Tet. The third defect is that her pulmonary artery is more narrow than what it should be. This problem causes not as much blood to flow to her lungs to become oxygenated to come back to her heart and out to her body. If not enough blood gets oxygenated it is hard for her to breathe and she will look blue too. The fourth defect is her pulmonic valve at the base of her pulmonary artery is dysfigured and too small which is causing an obstruction and causing even less blood to come from the right ventricle through her pulmonary artery to her lungs this also increases pressures in the artery which is dangerous. Another issue she has that isnt included in the series and is completely unique to her is another small hole in between her two chambers at the top called the Atria. Her Cardiologist Dr. Miranda presented her case to the University of Minnesota back in May and our original plan was to go there and have Dr. Sameh Said perform surgery but plans changed as he is leaving to go to New York soon which meant it was time to go with Plan B and present to the Mayo Clinic with Dr. Elizabeth Stephens. They accepted her case and then we scheduled her consult for surgery for July 11th. At her cardiology appointment in Fargo on June 30th we saw that her pressures in her pulmonary artery increased which means it is truly time for her surgery to happen. As her heart grows the pressures will continue to increase and if it goes untreated it will cause the right ventricle to dilate more and more and eventually blow out and cause heart failure. We also have had a struggle seeing her coronary arteries that come off the aorta in her scans. So these are important because these feed blood to her heart muscle where the aorta and pulmonary artery feed blood through the heart to the body. This is an important detail to remember for later when you read our posts from our time at the Mayo. The expenses that come from having a child with this kind of medical condition arent easy to handle. I had to leave my job in January for Claire so we have been living on Shawn's income only and add in medical bills and copays, travel expense with lodging, food, parking fees, and other miscelaneous stuff. Its been very difficult in every single way for us. We have a few ways to show support and help if you were interested. One is following our hashtag #prayersforclaireb on facebook. Second is following our story and updates here Third we have tshirts and hoodies designed for the Wear it Proud virtual event September 15th 2022. A portion of each sale goes to us too. https://www.bonfire.com/prayers-for-claire/ Fourth is our GoFundMe https://gofund.me/80f2bfd2 And coming up we will also have a fundraiser through our local coffee shop, Owly Coffee and Bean Roasters. Where Claire will have her own special blend of coffee and it will be called Claire's Heartbeat Blend and a portion of sales will come to us too. I can share that link for my coffee lovers to order and have shipped straight to you too. Thank you eveyone for reading up on all of this and please at the very least share our story and spread the word with your friends and family on your social media platforms! Love you all! Take care and God Bless!

Newest Update

Reality sets in July 12, 2023

Journal entry by Britney Beversluis —

Man... no matter how hard I try, it's so difficult and almost impossible to prepare for the reality check that happens when I actually see appointments scheduled, the days, times, line-up etc. We are 29 days away from traveling down to Rochester. I talked with Ronald McDonald house and they have made notes to expect us in town the 10th. They cannot guarantee us a room, of course, as its a first come first serve basis. But she did tell me that if this were happening now they would have space and have a room. S,o to have our bases covered, we will call the 9th to double check that they will have a room the next day for us then we arent caught by surprise. She also reminded me that only a family of 5 people are allowed to stay in the room. So we probably won't have the other kids down there with us, unless (heavens please forbid)  its an emergency. 

I looked at Claire's Mayo Portal and so far she has pre-op appointments starting 6:30am Friday 11th. Her first one is a CT Angiogram followed by a meeting with Dr. Ben Eidem the pediatric cardiologist we saw last time. I'm very happy to see familiar names and faces listed. Then we will head over to see Cardiovascular Surgery and go over the plan for surgery the following week. We will have nothing on Saturday and Sunday. We arent sure if we will stay in Rochester or not friday night or saturday night but we will be back down sunday for sure. She has surgery scheduled right away monday morning with a new surgeon Dr. Donald Hagler. So, maybe we will be meeting with him friday.. guess we will see. This surgery will be for her Cardiac Catheter procedure. Which will take actusly measurements of her pressures in her heart as well as images of her internal structure. They really want to see how big her residual VSD is. After that we will head back to Cardiovascular Surgery dept to meet with Dr. Stephens and go over last minute details and questions before her open heart surgery with Dr. Stephens on Tuesday morning.

There is a lot to do and tie up in 29 days. Honestly that to-do list can be paralyzing when I start listing all the things. So my goals this next month,
1. Take one thing at a time and not worry if everything doesnt get accomplished before we leave.
2. Be present to enjoy moments of cuddles and quality time with Shawn and the kids daily. 
3. Spend time in God's word and prayer. 

Please pray for safety, abundant love and healing for Claire, peace, strength, trust and provisions for us and wisdom, clarity, knowledge, attention to detail and steady hands for her teams at the Mayo. And any other prayers you can think of. Please continue to share Claires story. And continue to celebrate our little superhero princess warrior!

Thank you friends and family 
All our love until next time...
TTFN tata for now


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