Advocacy, Special Needs

“She still looks funny to some of us”

Let’s back up, just a bit. Our stay in NICU was only a 38 day stay. Don’t get me wrong, I know many families endure much longer NICU stays, but that does not mean that it was not traumatic for both me, and Kaydence. I watched my baby be poked and prodded, test after test, trying to figure out why my baby just would not eat. It felt like an eternity.

One day we had an amazing nurse, and she expressed her concerns to the doctors that day. She advocated that they look harder, “why is this baby still not able to suck on a bottle? there has to be a reason!” Her speaking up led to an echo where we learned about Kaydence’s heart defect that would require surgery soon. The first of many devastating blows. We continued working on feeding, and eventually she was able to build up enough strength to consume an adequate amount of formula, and we were going to be released. I remember feeling relieved. We had our answer, and now knew what we needed to do to fix it….or so I thought.

I will never, and I mean never, forget the comment that the nurse practitioner made to me the day of Kaydence’s release. Here I was, so excited to be going home, feeling a sense of relief, feeling like it was finally going to be time to bond with my newborn at home. But then, like a ton of bricks, “she still looks funny to some of us, you should see genetics. We suspect that it could possibly be Cornelia de Lange Syndrome, but we do not want you to stress. We are not positive, and well, it would not be a good outcome.”

And there, right there in that moment, I had nothing to say. I froze in fear, and panic. Here, for the last two weeks, I was under the impression that my child just needed the holes in her heart repaired, but that turned out not to be the case. While I look back on that situation and know that it was not handled in a professional manner, those words still pierce my soul. That was the day I knew. At the time, I did not want to believe it, but deep down I knew. That was the day that I began mourning the loss of the child that I though I was going to have. Every dream and aspiration I had for my child, in that moment, died. I knew that her life would never be that of a typical child. I knew that the milestones she would be reaching would not be those of children her age. I spent years mourning that child that I though I was going to have.

I used to hide behind this strong, fearless, persona. But lets be real. I spent every day in a living hell, fearing what would come next. My anxiety and depression took over my life, and very few knew that it even existed. I was ashamed to have those feelings. It made me feel like I was giving up on the child that God had given me. Looking back, I know that I was morning. I had suffered a great deal of trauma, and I was dealing with it the best way that I knew how.

It took six months to finally receive a diagnosis. Her bloodwork was sent off to a lab in Chicago. Several months later, I received a phone call from the genetics team that we had followed up with. (Per the nurse practitioners recommendation…) Kaydence had a gene deletion on the NIPBL gene. This confirmed her diagnosis of Cornelia de Lange syndrome. And this my friends, is where our journey really began.

CdLS Foundation website: https://www.cdlsusa.org/

-Brooke 💜

Advocate Like a Mother, LLC

Advocate Like a Mother, LLC offers a free consultation to help you understand how an Advocate could help your child receive the education that they deserve.

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Advocacy, Special Needs

Her Heart Stopped and Mine Did Too.

April 3, 2013. The day had come for Kaydence to go into surgery. A surgery that would last 5 hours. My baby was just 4 months old, and we could not wait any longer to have the surgery done. The holes in her heart were making it hard for her to maintain enough energy to eat. I remember arriving very early that morning. Surrounded by family. I remember carrying her to the OR doors. I looked inside the room, everything seemed so big compared to my 6 pound baby girl. I cried walking away from those doors as I handed my baby over to the surgeons who would save her life.

It is a feeling like no other. Fear, anxiety, hopelessness, and anger flooded my body. Why? Why my baby? What did I do to deserve this? Why did God give me this baby? Why would he think that I was suitable to be her mother? Years later, these answers came to me. I began to realize that she was a gift, not a punishment. She changed my life in ways that I never thought possible.

Her surgery went well, and after 5 long hours she was moved up to the cardiac intensive care unit. I though leaving her at the doors of the operating room was hard, I had no idea what was coming when I walked through those doors to see my baby covered in IV’s and monitors, and on a ventilator with a chest tube. It was a sight not for the faint of heart. Her little body was swollen and she was still sedated. I was told that they would take her off the ventilator within a couple of hours. After all of my family who were there came in to visit, they went home after a long day at the hospital.

Everyone left, and it felt surreal. I was not sure what to do with myself. I know that everyone left to give me time to settle in, but that is NOT what happened. Within the hour, every monitor in the room was going off and a flood of doctors and nurses came pouring into the room. I remember screaming, asking what was wrong with my baby. I got no response. And then. These words. Word I will never forget. One of the doctors yells “Grab defibrillators!” I though, right then, that I was losing my baby.

A doctor turned around and told me that he needed to administer a medication to stop her heart for a few seconds and then restart her heart to get it back into rhythm. I have no recollection of what happened next. I stood in silence with tears running down my face. The next thing I remember is a team of doctors pulling me into the hallway to finally explain what was going on. They told me that Kaydence was suffering from junction ectopic tachycardia. A rare condition where the heart goes into a series of arrhythmia’s. Her heat rate remained high for weeks, in the 230’s – 280’s. It was terrifying. They tried several medications, and kept her sedated, as she had to remain on a ventilator. They used morphine to keep her comfortable and sedated.

After about 3 weeks, they decided to place her on a cooling blanket to lower her core body temperature in hopes to slow her heart rate and then be able to raise her core temperature back up to normal. Finally! Something that worked. While this significantly lowered her hear rate, she was still suffering from arrhythmia’s. She was put on a medication to help with the arrhythmia’s. I was told that her heart was just in shock, and needed time to heal.

She was finally able to come off of the ventilator after nearly a month. It was an amazing day! Over the next couple of days we worked on weaning down all of the morphine and sedatives so that Kaydence could finally start waking up, only to realize that she had become dependent on the morphine and would have to go through withdrawals. I am not sure what was worse, the defibrillator situation or having to painstakingly watch my infant come off of an addiction to morphine. Her body would shake, she would scream for hours. At times I would give in and allow a small dose just to give her some relief. And then i dealt with the guilt of giving in.

An anticipated week long stay after surgery very quickly turned in to a 6 week adventure. Not an adventure I ever wanted to go on again. But of course, it was inevitable that she would be back in that hospital many more times.

Over the last seven years, Cincinnati Children’s Hospital and Medical Center has become our second home. While I never want to be there seeing Kaydence suffer through whatever ailments come her way, I do know that we are so blessed to be 20 minutes away from a nationally ranked Children’s hospital, that has saved my daughters life on more than one occasion.

One Year Post Op!

I will place the links below with more information on Junction Ectopic Tachycardia and Cincinnati Children’s Hospital and Medical Center. Thank you all so much for taking the time to read, and follow our story! Feel free to follow our blog, and share our story!

Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502046/

-Brooke

Advocate Like a Mother, LLC

Advocate Like a Mother, LLC offers a free consultation to help you understand how an Advocate could help your child receive the education that they deserve.

Advocacy, Special Needs

Intro. Welcome!

Hello everyone! And welcome to my blog, Catching Kaydence. I am so excited to get this up and going so that we can continue to connect with more people, and share our story.

This blog will revolve around our special needs parenting journey. Everything from our personal journey to resources for families like ours! I needed an outlet. I needed a way to share our story in a way that would reach those who may need to hear that they are not alone. A way to share our story with family and friends, and lastly, a way to connect.

Many know our background and at least a little about Kaydence, so here is the short version. (I will be making a separate blog post to share our story from birth to now). Kaydence is now 7, and oh what an adventure it has been. She is diagnosed with Cornelia de Lange Syndrome (CdLS), a rare genetic disorder, leaving her with significant developmental and intellectual disabilities. She is non verbal, and relies on a g-tube for medications and to supplement liquid intake. Her journey is not one for the faint of heart. My little girl has been through hell and back in her 7 years of life, but she is so strong, and continues to amaze me every single day!

If it was not for Kaydence I would not be where I am today. My passion for the special needs community has grown into my life’s work. I am an advocate for parents going through the IEP process. I have also spent the last 5 years working with adults with disabilities. Lastly, we are adult foster care providers. We decided to open up our home to adults with disabilities and be full time caregivers through a foster care program. All of these things have been such a blessing in one way or another and I can not wait to start sharing with all of you!

Thank you so much for reading! Please take a moment to follow Catching Kaydence so you can be a part of our journey!

-Brooke