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!