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Friends & Family Fridays: A young Family shares their story to help others.

Please meet one of my former MSUM Dance Team Members Kelli, her husband Tim and son Ray.

Kelli was a strong driven team leader back in her college days who always lead by example. It was the first year of UDA Dance Team Nationals adding a Pom Division. Sure enough she made sure the others knew it was our goal to win that trophy, and we did! It was these skills she learned from teamwork, leadership the ups and downs over the years of training that I believe helped her be a new parent, and not only a new parent but with a child born with needs. I was blessed and felt honored when she reached out to me for advice and just a voice of reassurance that all was going to be ok for her family. It is stories like this as a coach many years later that mean so much and displays the impact of the coach-athlete relationship. Please read on to learn their story and how they want to help other parents. Her email is at the bottom, if you want to reach her.

Describe How It Was As A New Parent Which Is Already Tough, That Your New Baby Was Going To Need Special Care.

I think our whole situation was tough, but I will say that our friends, family, faith, and the amazing medical staff we came across helped us immensely! We were 20 weeks pregnant when we found out Ray had a Partial AV Canal heart defect which meant he would need surgery to correct it, but also more ultrasounds and echos to watch growth in the meantime. With recovery after surgery he could be in activities and our life would move forward. Then, 3 months later COVID rocked the world which meant I was on my own at many appointments and isolated from everyone so that we could ensure not only that I stayed healthy, but that Tim could be there for delivery too. There was much uncertainty with transmission and who got impacted and how. It added a lot of extra stress. They also didn’t know if we would be able to deliver in town in case his heart gave him trouble right away, but we decided as a team it would be better to be at home for those remaining weeks due to COVID. We delivered and were able to go home, but within 9 days Ray had an episode and was in heart failure. We were back in the emergency room and admitted for about a month while they tried to figure out how we could keep him growing until he was big enough for surgery. We took him home and stayed isolated so that he could grow and be ready. At 5 months he was big enough and things were at a point where we couldn’t wait. Open heart surgery was necessary, so we went to Mayo. After a long surgery, recovery was tough on his little body. He had been compensating so long that once things were corrected it was tough to adjust. He unfortunately had two separate events of cardiac arrest which caused him to suffer a lack of oxygen to his brain. With testing it was discovered he was having subclinical seizures and that he had significant damage to his brain. Our whole life changed. No longer was this surgery something we would just move forward from, we would be looking at a new life with unexpected health issues, development, and future.

What Did You Have To Do At The Beginning?

Once we had our diagnosis of HIE (hypoxic-ischemic encephalopathy) our focus shifted from cardiac concerns, to both cardiac and neurological concerns. I think one of the toughest parts of brain injuries and HIE is the realization that for a time it can be living a life of unknowns and that no one’s journey is the same. There is no handbook for this and many times no answers, just wait and see. It’s a blessing and a curse because while the brain has a way of rerouting or connecting neurons if there is injury giving a chance to learn to do many things again, there was also the chance they wouldn’t reroute and we wouldn’t know until it was obvious. We knew from the minute he woke up things were different. Before surgery he would look us in the eyes, he was practically sitting unassisted, and holding onto toys. After surgery he couldn’t do any of those things and we didn’t know if he would ever again. Another condition that is common with HIE is CVI or cortical visual impairment. This visual impairment is not blindness, but the processing part of the brain is impacted. I have read that it’s like looking through a kaleidoscope, you can see but things may not be clear or in order. We were told that kids can learn to process their surroundings if they are consistent, but new toys or places can be difficult - faces being the hardest which is why often they avoid eye contact. He was eventually diagnosed with CVI so that was also something new we needed to adjust to and still are today. One of the scarier unknowns were and are seizures. His were subclinical so we never saw him seize, but obviously need to watch for that. We were always on the lookout for infantile spasms (infant seizures) as that was a constant threat. Now we watch for the possible development of epilepsy as he currently does not have that diagnosis. We know that he may not develop it, but there is higher risk for it to develop and so we carry an emergency medication. One of our blessings was that through it all he was able to take a bottle. He still had his ability to suck and that meant for the time being we could avoid a feeding tube and feel safe knowing he was getting nutrition. Weight is always a concern, but we continue to work on feeding. Overall, the first few months home were very exhausting mentally and emotionally. We were doing our best to navigate our new life that we were so grateful to have, but also mourn what was and also what may never be. Our emotions were indescribable.

What Can Help Others By What You Had To Do For Doctors Appointments, Housing Anything For His Safety, Life Changes?

I think finding doctors (I know this is something we were blessed with and that many people don’t have the opportunity) who you feel confident in and can work with as a team makes a big difference. Our pediatrician had to calm me down many times (still does) that we are doing the right thing and that Ray is doing well. Our therapists are truly on our team and make us part of every decision and conversation. Work with the people who are doing their best for your child and you feel like you can trust. I think one thing that is important to do, which I am arguably still learning to do, is to ask questions. I always feel that I’m being “too much,” but then I realize Ray needs me as an advocate and it’s okay to ask questions or to push. Another important thing I learned even while pregnant is it helped to have another person, if possible, with me at appointments. I am someone who hears the critical and negative more than anything, so my husband was able to remind me that there were some positives to each appointment. Next, Record, record, and record. I got this advice from the HIE Facebook page and it’s true. Doctors/specialists appreciate footage of what you’re seeing as it helps them when it’s a behavior or something that is not consistent. For example, it helped us a lot because Ray was showing movements that could look like infantile spasms to someone who doesn’t know, but because of his low tone it was actually acid reflux spasms and our doctor was able to rule that out with our footage. That brings me to my next bit of advice- find any advocacy groups to be a part of that you can. They are blessings as they can help you to not feel alone as well as troubleshoot any issues with equipment, questions you have, and sometimes even have a marketplace for adaptive items. However, these groups can be difficult too. They can make you fearful when someone else’s journey takes a dark turn or when someone’s opinion is not shared well. I always say the benefits of these groups outweigh the negative - community is very healing. There are some moms who even provide some humor that is relatable, laughter is therapeutic too! As far as housing adjustments make room for equipment! That has been a challenge for us as we have a stander, a chair, and another chair with a base to give him support. You will also benefit from finding a video monitor that is consistent to help check on the kiddos overnight. Enjoy and appreciate the little things. I used to worry about milestones Ray was missing and how life looks differently than I thought it would, but I’ve learned to celebrate the smallest of victories because they aren’t small at all - they are big, beautiful wins. I appreciate any smile, laughter, or choice that he makes as I didn’t know if I’d get to see that. Love the child in front of you for who they are, they are amazing! Lastly, as hard as it is, try to find grace. As a society we talk about mom guilt, but I think moms of medically complex kiddos have even worse guilt sometimes. I never feel like we are doing enough therapy or work to help him on top of everything else. What I’ve learned is your child needs to feel loved and accepted more than anything, so that’s the most important job you have! Also, in that grace, know that it takes some time to be “experts” in things you never thought you would or want to know. We still aren’t experts, but my husband learned the mechanics of the heart in a way my brain couldn’t comprehend so he understood when the conversations got technical. I research to better understand what toys we can get or equipment to talk about with therapists, but in those first months we were lost. Our heads and hearts were in survival mode, so we didn’t always understand the details - another reason it helped to have each other at appointments and to remember to ask questions. People need to know that it’ll be okay, and they’ll figure it out. You can’t instantly know things about medical conditions you never knew about before.

What Is A Daily Life Like With Your Son, Husband as a family? I can’t say we have a daily schedule because it feels like every day is different, but I feel like we work as a pretty good unit! My husband helps in the morning to get Ray fed with a bottle and I get him ready for daycare. Right now Ray is able to go to daycare. He gets great structure there as well as social interaction. Our facility is an important part of our team for Ray because they are great at including him, helping him get the nutrition he needs, and helping him try new things that we have been able to implement at home! After work time, we come home and we try to work with Ray on non-therapy days until supper. Then we snuggle, read, or watch tv until the bath/bedtime routine! What Is Needed For Him To Live A "normal" Life As Possible And Is There A Cure? There is no cure for a brain injury, as I mentioned some new pathways can be formed but not all will or can. We will continue to see specialists regularly as his body continues to develop as well as with therapy to try to keep his muscles moving and learning speech. Ray will start preschool this fall since we graduated from early intervention, so he will get into the school system which will continue to provide great opportunities for him to learn and grow. He is on an IEP which will help him meet with specialists and reach goals. His new adaptive stroller will provide him with supports to sit upright so he can observe and be part of life like anyone else. We also are working on an eye gaze communication device so he can tell us his thoughts on life! I think one of the most frustrating parts of being a medical parent is to see the prices of adaptive equipment. The minute the word adaptive is added to anything the price skyrockets. While we are blessed to have insurance and Medicaid to help, not everyone does and I wish society would make it easier for people to be included and supported without having to charge them more for it. What Is Your Hope By Sharing Your Story? I think one of the hardest parts of this journey is no matter how wonderful of a group of people you have around you to support you, there will be times you feel that you’re on an island. If I can make that island feel less isolated by sharing Ray’s experience that’s all I want. We all want what’s best for our kids, but it’s hard when life takes turns you didn’t expect and sometimes in very traumatic ways. I want the message to be clear that it’s okay to grieve, it’s okay to be frustrated, and that families aren’t alone in the dark times or bright ones. We are often told that we are so strong, but some days we aren’t strong. Some days we feel pretty weak and helpless and that’s okay. Ray has always been the strong one. He’s the one who had to fight to be here and he’s thriving. You can see it in his smile, and hear it in his laugh. He works so hard and we are so proud every day. I can never promise other families anything, as every situation is so different, but I know those early days can be some of the hardest. The unknowns and the fact that you feel like you know nothing are tough, and that’s okay. Your child will achieve wonderful things, so hang on even when it’s hard. I also want others to see that medically complex families don’t need sympathy, but if they could be inclusive and teach their kids that our kids are just as awesome it would mean the world. I’ve had many happy tears when I leave daycare and Ray has kids around him saying “good morning” and sharing their toys. I’ve also shed happy tears when a friend surprises me with coffee, we are tired folks! Little things are always big, and something I’ve learned about medically complex families is that they are some of the most grateful people on this planet. It’s okay to ask questions and check in on them. Please know that I am no expert, I know our life, and I know that our life has its privileges. Every case of HIE is different. Feel free to email me and would love to talk with others.

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