Category Archives: Leah

February 28, 2021


Today marks the end of Congenital Heart Disease Awareness Month, so why not end with an update. This update is long overdue, and we apologize that we have been out of touch. We know you continue to support Beckett from all over the globe, and we pray you know we do not take that for granted. In short, Beckett continues to thrive. Praise be to God! But let’s go back in time, roughly a year now, and I will try my best to catch everyone up.

Beckett loves school and is sad when he misses for illness or appointments, so when COVID hit last year and it was cancelled all together, Beckett struggled more than we had anticipated. He did not adjust well to the lack of routine he would have had had he been in school, nor did it help that some days Jonny was home playing teacher and some days it was me. He missed his teacher, his friends, his normal. While this did not set him back any more than the other kids experiencing the same scenario, it certainly did not propel him forward. His first-grade teacher recommended keeping him in first grade another year, for multiple reasons, mainly being social development. Jonny and I wrestled with this through most of the summer, literally up until about two weeks before school started. After many conversations between us, asking Beckett his feelings, and wise council from friends, family, and school professionals, the decision was made to allow Beckett to move on to second grade with his peers. So far, this seems to have been the right decision, and we pray in ten years we still feel the same. Beckett has had and continues to have a wonderful group of teachers, aides, and even bus drivers that pour into him daily, address his specific needs and love him genuinely. We could not ask for a better situation. They constantly work to make adjustments as he both struggles and succeeds, and he continues to move forward in closing the gap of his delay.

From a medical standpoint, Beckett continues to have little hiccups along the way, but is overall in very good health. He had pneumonia in January but stayed out of the hospital and only missed a day and a half of school. He is also having some feeding issues, nothing major, but he has a difficult time chewing and swallowing meats, which he desperately needs in his diet. We have been back in touch with the speech therapist he had for over four years, and we are looking to start him back into some monthly appointments to retrain him in this way. He wore a 24-hour Holter monitor in August, which monitors heart rate and rhythm and that was normal. Riley Hospital has recently started a Fontan clinic (Fontan is the name of the final open heart surgery Beckett had to repair his defect), and Beckett was seen there this past month. It is a multidisciplinary clinic staffed by Cardiology, social work, nutrition, and others when necessary, to view Beckett in a more wholistic manner. This clinic is in keeping with the top five pediatric cardiology/cardiovascular surgery programs in the country and national standards. The goal is to monitor current needs as well as early recognition of potential issues. Beckett will be seen by this clinic every 3-5 years, and they will help ensure he isn’t missing any necessary tests, procedures, blood work, etc., as there are guidelines as to how often things are to be done. With that being said, Beckett had a great report from Cardiology. They continue to be pleased with where he is and have no areas of worry where his heart is concerned. However, Beckett did require significant blood work prior to this appointment and his protein levels are low as is his HDL (good cholesterol). He needs to have adequate protein intake which is why he needs to be able to eat meat and is therefore working with speech therapy again. We have also been trying to find other areas of high protein to work into his diet in the meantime. They weren’t significantly concerned with his low HDL, because his LDL was also low (which is good), and they said that could be reason his HDL is low, because his body doesn’t need to make an excessive amount. But they still want us working in healthy fats, which we are trying to increase. They also monitor his liver very closely. Studies show kids with a Fontan procedure often have liver issues due to decreased blood flow. Beckett has had elevated numbers in the past, they have done ultrasounds and monitored his labs, and they have always returned to normal. His GI doctor is in close contact with a liver specialist in his department, and the clinic stated they would also pass his information to her as well. In the future Beckett will need a FibroScan to measure the density/fat buildup in his liver. They will also do a liver biopsy with his next heart cath as these kids are at higher risk for developing liver cancer. Again, this is all proactive treatment so that things aren’t missed in the beginning stages should they occur. Beckett will also be seeing a geneticist as they work to see if these heart defects are linked to specific genes, as well as undergoing neuropsych testing to see if they are ways we can better assist him. At the clinic he also saw social work who talked to him about friends, school, his feelings, and his awareness of his defect. They will also help set Beckett up with a counselor/therapist should we choose as these kids are prone to anxiety and depression. That feels like a lot of information, so if I missed something, or you have questions, feel free to reach out to us. It was a very encouraging appointment, and as we were leaving the nurse said, “I remember when he arrived here. I never thought I would see the young boy standing in front of me that I do today. He is truly a miracle”. Amen to that!

As for the fun stuff, Beckett continues to play baseball, soccer, basketball and take swimming lessons. We are also looking into placing him into some type of martial arts for both discipline and coordination. He has recently become very interested in drawing and this is a great tool for him as his fine motor skills continue to be delayed. He loves to watch how to draw videos on YouTube, and is getting so good! He also recently placed second in a math game/test at school, and he could not have been prouder. This past summer he was able to attend a week at summer camp the same week some of his cousins were there (I was able to volunteer as the nurse and keep a distant eye). He loved it and has already asked to go back this summer. We spent a week with Jonny’s family at Camp Maranatha on Lake Michigan, but unfortunately missed our annual summer vacation with my family at Lost Lake Woods Club due to COVID and hope this summer will be different. Beckett loves going up there where he can ride the golf cart looking for deer, ride horses, and swim in the lake. We also moved last summer, and Beckett loves that our new house has a playroom and a huge yard. He has loved all the recent snow and would play in it for hours if he could stand the cold a little better.

This month I’ve have spent a lot of time reflecting. Reflecting on the days we have endured, the blessing that Beckett is, and the testimony of his life journey. It is easy to get caught up in the normal hustle and bustle of the day to day and see Beckett as a happy and healthy young boy with little concern for his heart defect (not altogether a bad thing). But the reality that has hit me hard this month is that Beckett will never be “normal”. His heart will never be normal. He could take a turn at any moment and his life is not guaranteed to us. Beckett’s congenital heart defect never gets any less serious. Sometimes as his mother, the fears I have for him and over his life can be overwhelming. However, in the midst of these worries and fears, he lives life to the fullest just as “normal” as any other eight-year-old boy. It is easy to get caught up in the what ifs of his life, but just as God was faithful during so many uncertainties in that first year, he will continue to be faithful in the exact plan he has for Beckett’s life. So, we will continue to cherish each year, each day, each moment we share with him on this earth. One day at a time.

January 14, 2020

Tonight we are sleeping in our own beds. Today Beckett was much more himself and was moving around without pain. He only had mild pain when coughing. A sweet friend and former coworker brought breakfast and then stayed for hours while Beckett did homework, played numerous games of bingo with us, in which she perpetually lost, sorry Kelsey, and then even took him to the playroom. Such a fun morning into the afternoon and Beckett begged for her to come home with us. Before we agreed to being discharged, we did ask for a chest X-ray since Beckett has had a bad wet cough, which they obliged. It said a possible developing pneumonia but when cardiology looked at it they said it was nothing they think needed treatment. So, Beckett’s official discharge diagnosis was viral syndrome. So simple. So common. It is an abrupt and painful reminder that Beckett, a kid with congenital heart disease, truly is medically fragile and the smallest thing can turn his health upside down. We continue to thank God that he has brought Beckett through each and every health challenge, and with each time in the hospital we are acutely aware that there will probably be more down the road. But tonight we will relish in the fact that we are back under one roof. The brothers could not have been more excited as they were literally sitting on top of each other on the couch, leaning their heads on each other, saying they missed each other, and then Milo leaned in and unprompted, asked Beckett if his belly was feeling better. The precious boys! Thanks all for following Beckett’s journey and for continuing to support us as a family. And a special thanks to Mrs. Holder and her class who left a package full of get well letters on our porch today. We appreciate each and every one of you, and could not survive these days without you!

January 13, 2020

Update on today. While the CT scan was read as a bowel obstruction by two different radiologists, they are saying they don’t actually think Beckett has one since clinically he isn’t showing the normal symptoms. The scan did show some bladder wall thickening so we have sent multiple urine samples and I’m still waiting to hear if he has a UTI, which they said would be uncommon. He did appear a little dehydrated so he’s been getting fluids and tonight he finally ate some food around 8 and drank a large amount of water. That was a huge plus. He spent some time with dad today while I snuck in about two hours of sleep and then he slept most of the afternoon and evening. He still seems to have quite a bit of pain when he is up and moving and especially coughing, which he has a nasty one right now, but the pain seems controlled with regular doses of ibuprofen. We did spend a little bit of time doing some homework papers (thank you Mrs. Holder for sending them) which I think has helped ease his anxiety about missing school and tomorrow the Riley teacher is supposed to come work on some more. So, at the end of the day we didn’t really get any answers. We will see what tomorrow brings. Thanks for all the support!

January 13, 2020

Well this morning we find ourselves once again at Riley. Beckett did not have appendicitis, but rather a partial small bowel obstruction which is causing him a good deal of discomfort at times. Thankfully right now he is sleeping and we are praying that with bowel rest we can avoid more invasive interventions. His biggest concern, and what has upset him the most (in his words), “But I have to go to school”. Thanks for all the prayers and support. Hopefully we can get this boy back to school in no time!

November 20, 2018

UPDATE 11/20/18

Today was similar to yesterday. Beckett was doing pretty good first thing in the morning and then during breakfast his heart rate shot up again for no apparent reason. As the day wore on his oxygen saturation began to get lower and lower until he was finally increased on his oxygen higher than he has since we’ve been here. So here comes the good news. This evening he has looked the best I’ve seen yet. Goofing around with his dad, laughing and just overall having a good time. He’s gotten videos from school, church and cousins, as well as fun surprises from friends too! We can not express enough how much these mean to him. They make his day and his whole face lights up. His breathing has been very relaxed, and they have been lowering his oxygen back down. They also did an echo and some blood work this afternoon to rule out his heart as a problem and it came back completely normal. Praise the Lord! Here is even better news. As of rounds this morning, we are heading home tomorrow. Now, he does have to go home on oxygen, but at least he gets to come home. They believe that as this virus continues to work out of his system he will work his way off the oxygen. We are hoping that happens by the time he is supposed to go back to school on Monday. It’s going to be a great thanksgiving at home, full of rest, family and our many blessings.

November 19, 2018

UPDATE 11/19/18

Today was an interesting day. Beckett had a pretty good night, but unfortunately his oxygen didn’t get weaned at all. Then this morning his heart rate was fairly elevated until the early afternoon and his oxygen saturation was lower than it has been. His cardiologist tried taking the oxygen off all together to see how he would do and that sadly lasted a very short period of time. So he’s still where he has been for days. They added a new breathing treatment today that has a special piece that makes his lungs vibrate as he breathes in the medicine. He didn’t like it the first time, but he was doing really well with it this evening. However, it made him cough, a lot, which is what it is supposed to do, but he coughed so much it made him vomit and they had to be done before the medicine was finished. He will get it three times a day so hopefully tomorrow goes a little better.

I was feeling pretty discouraged today as it seemed Beckett was actually getting worse and not better. So, I spoke with the resident for a long period of time and was able to get all my concerns off my chest. She took them back to the team for discussion. They did do another chest X-ray which looks better than the one from Friday, so that’s good news. She came in later to discuss things with me and my mom and I both specifically asked if they were at all concerned his heart could be playing a part in this. They are not, thank heavens. They continue to encourage us that this appears to be a very nasty virus, plus partially still recovering from the previous pneumonia, and it has just really knocked Beckett down. She said this kind of thing could really take a toll on a normal kid and Beckett is already high risk. They are even talking about sending him home on oxygen that we could wean as he continues to recover should they not be able to do that here quite yet. They don’t want to keep us in the hospital just for a little bit if oxygen. So, tomorrow is a really big day. We need to see some good improvement throughout tonight and tomorrow. If he can do that we might be able to come home Wednesday. We are hoping to spend the holiday with family, but we don’t want to take Beckett home and end up right back here again. Only time will tell.

Beckett was able to play tonight with my mom and sister and he even had school today with one of the Riley teachers. That helps break up the long days and keeps him learning while he’s here. He truly misses his friends and teacher and asks often when he can go back. They sent him the sweetest get well video today and his face completely lit up at seeing them. Thank you to all who have shared encouragement and support. It definitely helps us get through the days.

Daddy went home today to work and stay with Milo. Sweet Milo seems a little confused by all this as we have hardly been able to see him. We FaceTime every day but it’s just not the same. I was able to see him yesterday for a couple hours as I snuck away to my sister’s baby shower, and now Jonny is home with him. The sweet thing just clings to us like a monkey and yesterday he kept grabbing my face and giving me kisses. We can’t wait to all be back together. Maybe it will be over a nice turkey dinner!

October 28, 2018

“No Problem!”

Thanks for all the prayers and encouragement everyone. We are finally home.

October 25, 2018

UPDATE (10/25/18)

Today was a good day. Stable. Uneventful. Good. Beckett had a rough start to the morning when he woke up about 6am crying out in pain. Crying quickly turns to coughing, to more crying, more coughing, can’t catch his breath, oxygen dropping, getting bluer, and round and round we go. The nurse and I were trying everything to calm him and while he would settle for a brief moment it was short lived before the cycle started again. He was asking for his dad so I called him to come over as he is staying across the street in the Ronald McDonald house. Unfortunately we were not able to get him calmed down after about 40 minutes so they decided to give him morphine to ease his distress. It was perfect. So I guess it was a little eventful first thing but nothing after that. Beckett spent the day watching movies and goofing around with family. He was able to sit in the chair most of the time he was awake and took a three hour nap. His appetite is slowly returning. We even played one of his favorite games, Bingo, which he won.

So what are they saying? Beckett’s respiratory distress is being cause by a pneumonia in his right lung. He is getting IV antibiotics, special breathing treatments and being encouraged to cough as much as he can. All the tests that have been done concerning his heart have shown no change from his previous appointments. Great news. Unfortunately it seems we may have hit the perfect storm as far as why he got so sick. He may have had something brewing prior to surgery on Tuesday that was exacerbated by being intubated for surgery, compounded by his post op pain and therefore not breathing deeply, along with pain medication that further decreases your respiratory drive. Over time it looks like this led to decreased oxygen until his body finally gave out. Possibly. They can’t say for sure why he was “passing out”/turning so blue, and we may never know. While a pneumonia like this would make any child ill, it’s possible due to Beckett’s abnormal cardiac anatomy he just couldn’t fight it.

So now it’s a waiting game. Waiting to see how long it takes to fight off the infection. Waiting to see how long it takes to decrease his oxygen demands. He is on a high flow oxygen that is giving him a lot of support. We can’t leave the ICU and move to step down until that significantly decreases. Waiting to make sure he continues getting better rather than worse. We will be here at least a few more days. But, we would rather stay here as long as it takes than not have our son. So, we wait. A game with which we are all too familiar.

We can not say enough thanks for all the words of encouragement, prayers, texts, calls and even visits. It means more than you will ever know.

October 23, 2018

Playing #GoPup (#GoFish) to pass the time. Also, looks like we are getting discharged today. 🙌 Thank God for a smooth day and to everyone for the kind words and encouraging texts. #ODAAT

July 8, 2017

Roastin 🔥