Back to the beginning.

Before your baby is born you have all sorts of hopes and dreams for your child. For me, I had day dreams about my daughter running around, playing tee-ball, and being excited about getting her toe-nails painted. I wanted my daughter to be super smart. So I was going to buy her "my baby can read" off the TV. I was going to teach her, her ABC's and how to count. Give her a real head start before going to school.

When I was 34 weeks pregnant that all changed for me. I had a sonogram done and the tech noticed something wasn't quite right with Serenity's head and brain. Her head was measuring 39 weeks and her brain had more fluid in the ventricles then it should have. After having another sonogram done at a higher level and having it done by a specialist they sent me for an MRI and blood work.

The doctor had me come in after getting the results of the MRI. He said that she has Agensis of the Corpus Callosum. My first thought was "What is that?" The doctor explained to me that this meant the piece of the brain that connects the two sides of the brain was missing. In Serenity's case it was partially missing. The doctor handed me a packet of information and said "Do you have any questions?"

My thoughts were racing and I had a million questions. But my eyes were red and full of tears. All my brain could come up with to ask was "So how is she going to be? Is she just gonna have behavioral issues or is she going to be in a wheelchair drooling on herself?" He told me he couldn't answer that question and we would know more when she was born. My thought after that was "Then what the hell was the point of asking?"

For the next 3 weeks I tried to imagine having a child with special needs, but I really had no idea what to expect. Not to mention I was in total denial and really wanted to believe that my baby was going to be fine, "normal", and able.

When the day came to have Serenity my fear was overwhelming. I had no idea what to expect. My sister Danielle said (who was my savior in the delivery room), Serenity was not even fully out yet when they told me to look down. That's when I came out with "Are her eyes far apart?" Of course my sister told me not to worry about that and she was beautiful. When Serenity was born she was not breathing and had no color. The doctors cut her cord and rushed her away to another area of the room to work on her. I repeatedly asked why she wasn't crying. Of course not one of the 5 doctors or 6 nurses said a word. What felt like an eternity later my sister said "Did you hear that?" So I listened, everyone was silent. I swear my heart stopped in that moment. I heard this very faint not cry, but noise. It was my baby and she was alive.

Over the first year of her life I learned so much. We saw so many specialist, I spent a lot of time learning the ins and outs of her brain, her organ issues, and other issues that are present.

I saw a lot of those hopes and dreams I had for Serenity go into a much different direction. Instead of running, playing, tee-ball, toe-nail painting, ABC's, 123's, and reading. It was more like holding her head up, sitting on her own, saying "Momma", reaching for and picking up toys by herself, and an ultimate goal of walking.

Serenity is two, She does not sit on her own, she can not walk, she does not talk, she does not pick up toys and play. Does it upset me? OF COURSE! Not because she can't do those things, but I see other kids her age and I hate that she's so limited. Like any parent I want the best for my child.

It absolutely breaks my heart that instead of he crying from skinned knees, she's crying because she was just stuck with 5 needles and had too big of a catheter shoved up her pee hole. It breaks my heart that all I can do is hold her and cry right along with her and tell her I am so sorry.

When an able child is sick you get the medications your child needs, you make them rest and they get better. With a disabled child or at least in Serenity's case she won't ever get better. Her genetic syndrome is a progressive disorder that will only get worse. Her seizures will never end. Anti-seizure medications only work short term and you have to switch medications and gamble. Never the less, in the mean time I watch my child seize and all I can think of is.. "Is this going to be the last?" "Is this going to be the one that she doesn't come back from?"

A lot of people don't realize how dangerous seizures can be. During a seizure your heart rate sky rockets putting you at high risk for cardiac arrest. With all of the medications that usually need to be pumped in to get the seizure to stop, that also puts you at risk for cardiac arrest. Did I mention that if a person seizes too long they could potentially go brain dead? In a nutshell they are life threatening and extremely scary.

Serenity is at risk for so many things. Her seizures and her ever growing tumors are only the beginning. Her organs also have issues and she's at risk for pulmonary embolism.

Everyone says that I am such a good mother because I completely dedicate every second of my life to Serenity, but honestly how could I not with everything she has going on?

I won't say that Serenity's days are numbered, but she's certainly not promised tomorrow. Every moment that I have with her I am going to take it for everything that moment has.

Thank you for reading.. -Kara

Serenity's Life

Just a list of what Serenity has.. I am not going to name everything, but here goes...

CLOVES Syndrome- A rare progressive genetic overgrowth disorder.. This causes her to have  have fatty tumors. It puts her at risk for a lot of stuff.

Brain abnormalities that cause seizures- Like I said I am not going to list every one of them, but her seizures are life threatening. When she goes into one I don't know that she will ever come out.

Kidney stones- Very painful calcium build ups that pass by going from the kidneys down the ureters then to the bladder through the urethra and out the pee hole. Her last one was the size of a pencil eraser. Yeah imagine that!

Urinary retention- She holds her pee. This caused her to have a super extended bladder and she stopped peeing on her own. To shrink it down she needed to be catheterized every 6 hours then got moved to every 8 hours. Now that she started peeing on her own again it's only when she doesn't go.

Ketogenic diet-It's a special diet for kids that have failed too many seizure medications. This diet makes your brain think that your not eating and give your body the nutrition it needs to survive. It's pretty complicated, but it's keeping my girly from seizing!

G-tube- This is a feeding tube that goes directly into her stomach. She used to eat baby food by mouth, but stopped when her diet when from regular food to keto food.. Eating canola oil multiple times during a day mixed with baby food isn't too yummy. So currently She is fed a special Ketogenic formula through the g-tube so she doesn't have to taste it or all her yucky meds.

(Serenity Needed a feeding tube in the first place because when her diet got switched all of her medications had to be switched to pill form. She would take it by crushing it and putting it into water. You can only imagine what that tasted like. So she started holding it in her mouth then aspirated it (Breathed it in) and got pneumonia from it. So she got a tube that went into her nose down her throat into her stomach. She had that from march-august then on August 16th she got her g-tube )

Cortical visual impairment- This means Serenity's brain can not process what she is seeing all of the time. Sometimes she can see you and other things and at other times she can look right past you.

Serenity can not sit on her own, she does not walk, She doesn't not talk. She has a rough medical life. She does however, smile, laugh, and sing in her very own way. If you have any questions that I have no answered here please feel free to ask.. I am an open book when it comes to her. Knowledge is key to a cure!

-Kara

A long hard year for a very strong little girl.

Finding out your pregnant when you just have a terrible break up is a tough thing to go though. Knowing your going to have to do things on your own is even tougher. Finding out there is a problem with your baby while your pregnant is simply heart wrenching.
At 34 weeks pregnant we found out there was a problem with the baby. There was fluid on her brain and her head was very large. After an MRI was done it showed that she was partially missing the corpus callosum in her brain. Little did I know that was only the beginning.
At 37 weeks pregnant on April 21, 2009 my beautiful baby girl Serenity Paige was born at 11:23 pm. It was the best moment of my life, but very scary at the same time. Very rapidly the rushed her away into a little corner of the room that made it so you couldn’t see what was going on. I knew something was wrong because there was no crying coming from that little side room. I said over and over again “Why isn’t she crying?” It felt like forever until I heard my sister say “did you hear that?” and we heard a little tiny sort of cry come from that room. A few moments later they brought over my bundle of joy and even though I only got to hold her for a few minutes I was overwhelmingly happy. Shortly after Serenity was born she was diagnosed with a rare genetic disorder called Macrocephaly- Cutis Marmorata Telangiectatica Congenita.
About a month and a half after Serenity was born we were home and I was feeding her. I was looking down at her and noticed she stopped sucking on her bottle and her head started to jerk back. She stopped and became very stiff about 30 seconds later the head jerking happened again. It was then I realized my daughter was having seizures. After being taken to the hospital by ambulance Serenity was hooked up to an EEG machine. Sure enough Serenity was having epileptic seizures. She was put on medication and it’s been a battle ever since.
It seemed like every single month since she started having seizures she would be in the hospital for one week of every month. That was until October of 2009. Serenity’s seizures had changed , every time she would seize she would turn blue and I was giving her diastat what seemed like constantly. So back to the hospital we went. Serenity will seize anywhere up to every 10-15 minutes.
By this time It was obvious that Serenity had more issues and other things going on. I will not get into the technical stuff cause if I don’t explain everything word by word you simply won’t understand it and who wants to read all of that? To make things easy lets just say she has a ton of brain abnormalities, kidney issues, liver problems, ect…
Serenity’s actions were making me very uncomfortable and worried that something else was going on in her brain. I insisted they do a more up to date MRI. They refused because of the terrible state she was in and said they could do a CT scan. When the results from that came back my heart dropped. They told me they thought she might have had a stoke and she needed an MRI immediately. As I write this and think back it still brings tears to my eyes. Thankfully she did not have a stoke and it was a misreading on the CT scan.
After the entire 6th month of her life being hospitalized she was able to come. Still seizing, still turning blue, still not doing well at all, but was able to come home. She was sent home on a new monitor, a picc line attached, oxygen, and IV medication. Their was a new medication in the works that had to be specially ordered and took a while to come. This medication was not exactly for her seizures, buy in turn worked as an anti-seizure medication.
Very slowly the new medication started working. By the beginning of January Serenity became seizure free. Mind you from all of the IV meds that were pumped into her if Serenity wasn’t sleeping, knocked out cold she was seizing. This made her lose every bit of development she had. She had and still has to work very hard at getting developmental skills. Before going in for the month long stay she was smiling, cooing, sucking her thumb, and making all sorts of noises. When she got out she wouldn’t even smile. She simply didn’t know how to anymore.
Slowly, but surely Serenity gained all of her developments back and gain many more. She gained head control finally, she smiles, laughs, screams, and with help will even stand up and weight bear on her legs. In April her picc line came out, she came off of her monitor, and of course turned 1!! Thank god my big girl is still seizure free!
To be honest that is the short version of her first year. There is just so much looking back that that precious little girl went though… I want to tell you how it has effected me. (PLEASE CHECK YOUR SYMPATHY AT THE DOOR.) I remember sitting in her hospital room right around the time they thought she had a stoke.. A lot of my family came to the PICU because truthfully at this point we didn’t know if we were going to have much time with her… Everyone was standing around her bed when she went into a pretty bad seizure.. It was so hard trying to stay strong for my family who didn’t see this all the time.. I remember the looks of their faces when they truly realized the severity of the situation.. That was a very tough moment for me…
For me when my child is in the hospital I find it very hard to do anything else, but be by her side.. To do something simple like go home and take a shower is hard for me.. I know it might sound stupid, but it’s the truth. You can’t sleep, you can’t eat, you can’t do anything, but sit there and cry. When she had her long stay of constant seizing I remember begging God to either take her in his arms and stop this suffering or make my baby better.. I was saying “WHY, why god, why are you letting her suffer, what did she do to deserve this?!
When Serenity came home from the hospital I made it look like everything was okay to the outside world. I was truly terrified at the possibilities of what could happen. I slept with her in my arms on the couch for about a month scared she would seize and I wouldn’t wake up. At least like this I could feel it and wake up.. From there it graduated to her sleeping in her pack-n-play pressed up against the couch and it was like that until February.. Until I felt certain she wasn’t going to seize out of nowhere. As Serenity go more mobile and could move around in her crib I became scared she was going to somehow wrap her monitor cord around her neck while she was sleeping. This fear made me wake up 10 times a night just to check on her. Sure enough one time did she did not bad enough to hurt her it was more tucked under her chin, but it was enough to scare me. Still to this day I spring out of a dead sleep thinking that cord is strangling her.
I will end this story by saying how thankful I am. Thankful my little girl has successfully made it to and past her first birthday, thankful to just have her in my life. She has taught me so much and has made me a much better person… For that I am Thankful!

Where to begin..

I have always aspired to be a journalist and life has put those dreams on hold. I wanted to go to college and work for a big magazine. Maybe one day those dreams will come true. For now I will just start this blog and see where it takes me.

I am struggling with what I even want to write about on here. I don't want it to be a diary of my life, more my life thoughts and current feelings on situations. I will talk about my life and my experiences for sure, but it will not be a daily diary of what goes on.

I would like to say I don't want or mean to offend anyone with anything I will eventually write. However, I can promise people will be offended and I apologize in advance. If you don't like what I write then by all means don't read it. You can exit this page with a small click of the x.