Brady Wynn’s Story

Brady’s story is on our website- however it is missing some key points on how I felt during this time. Writing this blog has been very therapeutic for me. To be able to get my thoughts and big emotions out there took some guts and vulnerability but it has helped me do some incredible healing. This will be my last blog post as of now. I may return but I have another idea I want to put some focus on and if you’ve been reading my blogs, you know how I do my best these days to never overwhelm myself. I am going to pause/stop whatever it may be on my angel’s story. For if it wasn’t for this incredible little baby none of this would be possible. We are receiving applications for our Super Parent Support Program at an incredible yet alarming rate- I’m not sure I should be happy because it is very sad to hear these stories and see how often these things happen but on the other side, to be able to provide families with things that would have made our lives much more manageable is the best feeling in the entire world. My passion is burning strong and just because I am taking a break from this, doesn’t mean its dwindling, it means its spreading in another direction.

Sweet Brady

My big eyed boy loved arching in any way he could.

Brady was my first baby that we did the 10-week genetic testing on. We found out super early he was a boy, and I cried. I so wanted a little girl. Brady was supposed to be my last baby and I just couldn’t believe I would never have a little girl. While being super angry and complaining to my mom she said “what if something happens” because she knew how ridiculous I was being. It never crossed my mind that something could happen, the test came back good. And when it did, the guilt I had for wishing he would be a girl instead of healthy kept me up many, many nights.

My 3 boys

I am now totally happy as a boy mom, good thing too as my rainbow was my 4th boy and final baby. And for the love of God, people, please stop asking boy moms if we are going to try for a girl like we have a choice in the matter.

My precious bundle, Brady Wynn, was born 5/21/2019 weighing in at a whopping 9lb 4 oz after a seamless pregnancy. I didn’t have ultrasounds after my anatomy scan around 20 weeks. I am not sure if this would have changed things, however I’m glad I didn’t know. I was able to fully enjoy my pregnancy. His delivery was a little rough. I started having contractions around 9 pm. They didn’t hurt at all, but my stomach got tighter than ever before. I was in denial (so was Brian) because I had never gone into labor on my own. They kept coming regularly and eventually they hurt- bad! I called the hospital but couldn’t wait for them to call me back, I called again and said I was on my way. I got to the hospital around 11 pm 5/20/19. I immediately started telling the nurse I needed an epidural ASAP on the way up in the elevator. She said if my water didn’t break, I could. My water broke as soon as I got on the bed, which meant no time for an epidural because I was at 10 cm. After hours and hours of pushing they gave in, which I thought meant it was C-Section time, nope. They gave me the epidural and had me “rest” for a little while before starting to push again. I only saw the on-call doctor when I started pushing right after we arrived at the hospital. By the time I was going to start pushing again, my doctor arrived. Brady was finally born at 6:51 am and all seemed well. I heard my doctor ask the on-call doctor “Why didn’t you section her?” This still bothers me to this day. Why didn’t I speak up and say clearly, I can’t do this, get him out? Why didn’t the on-call doctor even suggest I have a c section? Why was the nurse so adamant to have me do this naturally? She kept saying, it’s your third you don’t want a c section now. If this was happening today I would 1000% be able to speak up… but it’s too late. I am doing my best to let it go because I cannot go back in time no matter how much I wish I could. There is not any proof that this caused anything abnormal with Brady and I made sure to ask that all his monitoring be looked at. Funny thing is, I don’t remember having monitoring. I remember feeling like I was pushing too early because the contractions were so painful and asking for a monitor so they could better tell me when to actually push.

9 Pounds 4 ounces

Thankfully my biggest baby- by far.

After Brady was born, he seemed ok, but something seemed off to me. He didn’t hold his legs scrunched when you’d pick him up and he was very floppy. I thought this was because he was such a big boy. He was very calm and slept a lot the first few days but within a week of him being born he started to cry, all the time. Cry, sleep from exhaustion, cry again. When my husband went back to work, I cried holding my baby on the couch because I felt like such a failure. Being home all day with an inconsolable baby and a 1-year-old and my 10-year-old was such a struggle. I was so excited to have my 3 boys (now that I delt with the emotions of being a boy mom), my two littles were so close in age and I felt like such a loser because I couldn’t manage.

We had our baby to the doctor three separate times before his 2 week visit because he was inconsolable. We were told he was a fussy baby, he had reflux, he was colicky, but we knew in our hearts there was something more. We took Brady to the chiropractor while trying everything to help make our little guy more comfortable. She mentioned he didn’t have a soft spot. I looked at his most recent doctor appointment notes. At birth Brady’s head measured in the 30% percentile. At his 2 week visit it measured at 3%.

On June 9th after another call to the nurse she told us to take him to Children’s Hospital of WI. I assumed she meant Mequon, she said no the main campus. They too were going to send us home, but Brady spiked a fever he didn’t have when we arrived. If you are not aware when a baby under a certain age gets a fever, they automatically do a spinal tap to rule out infections. It was pure agony waiting outside that door hearing my baby cry in pain. We were admitted over night to wait for results- which came back fine.

The hospital stay that changed our lives forever.

In the hospital after his EEG was removed.

We pushed for more testing on his head because that is what we were most concerned with. The on call ped said “this is nothing neurological, he’s gaining weight and nursing, neurological babies don’t do this”. He was very wrong.

The next day they did a CT to rule out craniosynostosis, a condition where the sutures in the head close prematurely. The news we were about to receive was nothing we could have ever prepared for. We were not expecting anything like this. To the doctor’s surprise, the CT showed his brain had not grown since birth and parts of it were made from abnormal brain matter. When the doctor came back into that room followed by enough medical students to fill the entire space my world completely shattered. My cousin had just brought us lunch and I was worrying if I should eat my sandwich because it had cheese on it. I was in the process of removing everything from my diet that could have been contributing to his fussiness. Needless to say, it wasn’t the cheese. The doctor kept saying Brady would never be normal. He would never enjoy life. He would have a life stuck in a chair with machines doing everything for him. The next day they did an MRI that showed cysts all in his frontal lobe. From there we met more doctors and teams than I can even remember. He had an EEG (electroencephalogram to record brain activity) which made doctors think he was also suffering from seizures.

After many nights at the hospital, they sent us home, completely terrified, with our sweet boy and a binder full of appointment schedules, medication dosages and times and connections to set up appointments with local therapies. Bradys team consisted of Palliative care, neurology, physical medicine and rehabilitation, dietitian, OT, PT, speech (bottle feeding), genetics, and his regular pediatrician.

I went into a deep depression after that hospital stay. I just wanted to sleep but I could never sleep. I remember taking walks when Brady would allow and just daydreaming about what life would have been like if I could have just been happy as a family of 4. I was always the person who thought “I’ll be happy when” and before Levi was born, I was planning his younger sibling. Partly, because Levi was ivf and we had 2 embryos left and partly because that’s who I was. Brian and I would take turns staying up with Brady. At 5 am we would switch so the other one could get a few hours of sleep before work or before caring for our other children along with Brady.

We did our very best to live like a “normal” family with Brady. Even though his life was short and incredibly difficult he went to the zoo, took boat rides, made it to Strawberry Fest, and even the State Fair.

Brady on a boat.

Enjoying the waves in his cute little life vest.

The palliative care team told us between 4 and 6 months would be a very telling time in how Brady’s life would be. Babies are born with a sucking reflex; this reflex goes away between 4 and 6 months old when baby learns to do this on their own. Sadly, our Brady never did. We tried a feeding tube but his little body could barely process food and he threw most of it up.

Bradys life was very challenging and unknown. We did everything we could to keep him comfortable. The perfect little guy even threw up his own feeding tube, so we didn’t have to make the gut-wrenching decision to take it out.

Brady passed away peacefully wrapped in my arms with Brian holding both of us on 11/3/2019. He went to hospice 10 days before he passed away so he could finally be fully comfortable, and we could love on him every second he had left. During this time, I did all the things I did with my other baby’s, warm baths together, we made so many foot and hand print crafts and I just laid with him on my chest- nothing better than a tiny baby sleeping on your chest. It is so difficult to try and make an entire life time of memories in 10 days while waiting for your baby to die. That is just cruel and unfair. I woke up one night and told Brian we had to do everything we could during this time to just be present and soak in every moment left with him as a family of 5.

Stair way to Heaven.

The sky as Brady made his way to Heaven. Can’t wait to see you again my sweet boy, till then I will live life to the fullest for both of us.

Brady never received a concrete diagnosis besides microcephaly, because his case was so rare, even after whole genome sequencing, we were still left without answers. We are not sure what caused this to happen to our angel baby, but we are learning to be at peace with the unknown.

We knew the end was near. People came to say their goodbyes to our amazing, precious, boy.

The very last photo ever taken of Brady Wynn, taken on 11/2/2019 the day before he passed.

Being able to keep Brady’s legacy going strong is one of the best things I am doing in my life. Brady brought so much to my life in his short 166 days here on earth. He gave me purpose, he gave my life a bigger meaning than I thought possible, and he taught me just how far love can be stretched. I owe my life to my baby and I will forever live on for the both of us, really living, not just existing.

Remember, you are stronger than you know, braver than you imagine, and loved unconditionally.

XO, Mandy (Brady’s mama)

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