Baby Sister's Story...so far

This first post is dedicated to my daughter Sydnee, also know as "Baby Sister" around our house. She is the inspiration for starting this blog.

This is a long post. I tried to cut it many times, and did. With so much to tell however, this is the shortest I came to. Stay tuned for shorter posts in the future.

Sydnee was born on July 27th, 2012. My husband Tyler, a commercial fisherman, was in Dutch Harbor, AK at the time I went into labor. With Sydnee being our second, I wasn't feeling nervous. Actually, her being twelve days early had me in more of a shocked state than a nervous one.

Her delivery was a breeze. In fact, I was talking business with my mother-in-law aka Grammy (whom I work for) minutes before they told me it was "go time". Although Tyler wasn't there for the big show, Sydnee was greeted by her Aunt Melissa (my sister), Grammy, and CC (Grandpa Kev's lady). Tyler was on speaker phone the whole time getting the play-by-play from Grammy who would scream to him ALL that was going on. Our sweet Sydnee arrived in about 15 minutes after "go time" was established. No complications. Lots of tears of joy.

Sydnee Bean Kirkpatrick

7/27/12

Tyler made it to us the very next morning. We were beyond overjoyed. Our daughter was here. We could not wait to take her home and introduce her to Sam, our 2 year old son.We relished in the craziness of being a new family of four.

After three weeks Tyler headed back to Dutch Harbor to finish the fishing season. We expected him home in about 6 weeks. Everything was going great. Busy, but great.

It was week 5 of Sydnee's life, just over a week since Tyler had left, that we hit a bump in our happy road.

Grammy and Grandpa had graciously taken Sydnee for a night so I could get some much needed one on one time with a very jealous Sam. The next day Grammy mention she noticed Sydnee doing something odd.  Before she even described it, I knew exactly what she was talking about. I had noticed Sydnee doing something odd the other day as well. Grammy noticing it too raised a red flag and had me call the doctor right away.

We noticed Sydnee slightly raising both of her arms and her head and eyes averting to the left. I had only seen her do this about once or twice, but now that Grammy had brought it to my attention I studied her all afternoon. She would repeat this behavior about 10 - 20 times, in a cluster. A cluster would appear 1 - 2 times during almost every hour that she was awake. Each movement lasting about 3 - 5 seconds.The movement was more aggressive if she was laying on her back.

I got on the phone with a nurse to book an appointment with our pediatrician. The nurse told me it was probably nothing, but to try to get her on video and call back. I hung up and called back within five minutes telling them I had a video.

Next, I did what most probably would have done, I went online. Sure enough a hit came up on You Tube.  I found videos showing other children doing exactly what Sydnee was. Most were labeled Infantile Spasms. I was sure that this is what she had. I was terrified.

I called Grammy who told me to get off the Internet immediately. She also demanded that she come with me to the appointment. Her being at the appointment was not just amazing support, but a much needed second set of ears.

 --- Note; my parents live in Arizona. To be so close to my mother-in-law is a gift I can't begin to describe. Maybe in a post to come. ---

At the doctor appointment we describe the behavior Sydnee is expressing and show the video. The doctor recommends an MRI at Children's Hospital in Seattle next week. I look at her like she's crazy. Wait one week!?! I needed answers. I needed a plan to help my child. Just as the appointment is wrapping up Sydnee has an episode. I become extremely upset. She doesn't appear to be in any pain, but watching her, you just know this behavior is not normal.

Seeing how upset and worried I am the doctor asks if I would like to be referred to Children's Hospital ED (Emergency Department). The other option at hand is to wait for the MRI next week. I looked at Grammy who was also in tears.

For the next eight hours Grammy, Sydnee, and I were confined to an ED room at Children's.  I tell the story of when we noticed her spasms about 20 times to about 8 different doctors and nurses. Grammy does her best to stay positive saying things like, "We have just sped up this process! We are HERE. We are not having to wait a week!  We will find answers. This is the BEST place in the country for her to be!" In the meantime, they are poking and prodding my poor 5 week old daughter and I am useless. I'm a zombie full of tears, worry, and exhaustion. Grammy tells me I need to eat and starts force feeding me apples and peanut butter. We are admitted to the hospital that evening.

We end up staying six nights at Children's. The first three days/nights were the worst. All the testing. MRI, EEG, Spinal Tap, countless blood tests. It was a dark time. Tests were taken and then we were left waiting hours and days for answers.

Day three in the hospital, we are finally given answers. Sydnee is diagnosed with Focal Cortical Dysplasia (FCD). She was born with a small nickle sized dark spot in the lower left portion of her brain. What this means is that the neurons in this small area did not grow straight, and instead, formed crumpled.  FCD is what is causing her to have spasms and seizures. She is diagnosed with Infantile Spasms (IS), which again, is what I found online.

 

We discuss treatment options. We decide to go with a medicine called ACTH for her spasms. This will require me to give her a shot in her leg every day for at least three weeks. She is also placed on two seizure medicines and two others to help with the side effects of all of the above. All together, six different medications.

We stayed in the hospital for another three nights to make sure she has no bad reactions to the medicines. She continues to have episodes of spasms. Grammy and I log them as they happen.

After six extremely long nights we are discharged from Children's. We are so happy to be heading home. We are told the ACTH will take time to show results. I am told that there is a chance that the medicine may not work. That after two weeks if the spasms are still present we will up the dosage and go again more aggressively. I am told many people have FCD and never know it. That her brain is working hard to make a detour around the damaged area. It's a lot to process.

Grammy stays at my house for three nights to make sure I have the medicine routine down. Tyler and I make the decision for him to finish out the fishing season in Alaska with 3-4 weeks left. Shoot, someone has to pay the bills we know are going to come.

Two weeks go by and Sydnee is still having spasms. It is beyond heartbreaking. I call Neurology at Children's. They up her dosage of the ACTH. Almost doubling it. In my mind I feel like we are finally saying F-U to these spasms.

I call Grammy crying. I tell her I just want that day to come. That day when I don't see any more episodes. Grammy gives me the best advice. Amongst my sobs and what she refers to as "crazy talk", she tells (more like yells) at me to go and watch something funny. She says I need to laugh. I pull up my DVR and see the new season of SNL has started. I watch. I laugh. I laugh out loud. I am in shock that I still know how and can laugh. It feels so good. I stop crying and watch more funny stuff.

I went to bed that night and changed my prayers. I stopped begging God to fix her. Instead, I started thanking him for her. Just as she is. For Sam. For Tyler. For Grammy. For my family and  friends. For the doctors that are helping us. It was the moment that I stopped crying and decided to be strong. The moment I accepted Sydnee for who she is. The moment I fully embraced it all.

Three days later Sydnee's spasms stopped. Exactly one day before Tyler comes home. He has never seen her have an episode and we hope it stays that way.

The first week Tyler is home we have to go back to Children's for another week. Sydnee developed high blood pressure from the ACTH. A known side effect.This time in the hospital was very different. No Grammy (who I missed terribly as we had a little routine that I enjoyed). No logging spasms as she wasn't having any more episodes. Tyler was a great support. We watched lots of episodes of "Workaholics". We laughed together amongst all difficulty that was going on. After five nights her BP becomes stable. Still very high for a now eight week old, but stable enough to go home. Two more medicines were added to her already long list and we now have our very own blood pressure machine.

Fast forward to today...

We have yet to see any more episodes of spasms. The doctors prepare me however that they may return. I am thankful that we at least know the ACTH works for her. I am hopeful, and as a family, we are moving forward.

Sydnee is smiling, cooing, and happy. She is a little bit behind in development (just now starting to lift her head when on her belly), which we expected since the spams took a toll on her body. Tyler and I are taking her to occupational therapy classes once a week and working with her at home to help strengthen her muscles. We are at the doctors a lot, 1-2 times a week and then therapy. She sees a team of Neurologist, Nephrologists, and Epilepsy specialists.

Tyler and I are committed to giving Sydnee and Sam the best lives they can have. To laughing and smiling together, to being thankful for all we have.

As Sam is running around the house naked and screaming the other day, I tell Tyler I just want Baby Sister to be able to have fun with him too. --- Grammy would refer to my comment as "crazy talk" --- Tyler says, "Of course they will have fun together. It just may be that their idea of fun is different. Ya know, kinda like how I like to watch sports for fun and you like to watch those crazy Housewives." I laughed. It was a good answer.

Me & Sydnee hospital stay 1.



Grammy, me & Sydnee

She is perfect.

My favorites



 

Thanks to all our family and friends for all your support and love. We feel your thoughts and prayers everyday. Keep them coming. We are sending them to you in return.

 

A few shout outs;

To Lindsey Barnes, my sisters, Uncle Ryan, my sister-in-laws, Grandpa Kev and CC...who all stepped up to take care of Sam so I could focus on Sydnee. I love you all.

To Grandpa David, for bringing  me and Grammy food everyday we were in the hospital. Your visits were the best part of our day.

To my parents for all their love and support from afar. It kept me strong.

And...to Grammy. Who I could not have made it to the positive state I am in today without. Who I will never be able to thank enough.