Who am I?

I am Amanda, a stay at home mother to two wonderful children, Fiona & Ferris. Fiona has Autism, possibly caused by a small genetic deletion at 22q13.1 (but not the region attributed to Phelan-McDermid Syndrome - although she presents similarly), but we cannot say for certain, as her particular deletion is undocumented. In other words, according to medical literature currently available, she is the only known person with a deletion in this exact region, and so it is of "unknown clinical significance" and we have no idea what her future holds. Currently she is almost completely non-verbal, her only real word with any real meaning being "boob" as she is breastfed. *gasp* Yes, you read correctly, my almost 3 year old daughter still nurses, and I'm proud of that fact. Ferris is a neurotypical little chubba bubba baby man. He gives me sanity, and hope, and comfort for the future. He is nearly 8 months old at the time of this writing, and he is my charming, adorable, little-big guy. He is also breastfed, and doesn't seem to mind sharing with Sissy, who is the neatest thing since pureed peaches in his eyes. Want to know more? Just ask!

Tuesday, March 22, 2011

More Than Autism - My Sanity

I also want to use this blog to talk about other things important to me, so it isn't just about my daughter's Autism. For that is but one aspect of our lives, no matter how central, and consuming, our lives still move forward, and there is much to discuss.

One such topic is my sanity. Allow me to explain.

I often say that Ferris, my son, is my sanity. He keeps me strong and hopeful. Not to mean that I'm playing favorites or anything, I love my children equally but differently - as in, they are different, with different personalities, and so I love different things about them, not that I love either more or less than the other. They are both my life, my everything, my reason for being. I love Fiona's brilliance, and persistence, and ability to overcome nearly any obstacle or hurdle, and I love the way Ferris is able to keep me sane (Ask me if I still feel that way come the teenage years, lol).

So, since were going back in time here, I figured I would share Ferris' birth story as well. Here goes. This is another that I am taking from an old facebook post, to keep the accuracy, as memories have a tendency to transform and reshape over time.

Ferris' Birth Story
August 8, 2010 at 3:47am

Okay... Finally home for a few minutes so I guess it's time to try and write this up if I can get through it all again.

This was not at all the experience I had in mind.

We were going to try for a VBAC (and I still do not regret trying!) and were going to do an induction. We got all that started, and I spent 24 hours having still random contractions that hurt, but weren't really doing anything. They got close together, and I managed to dilate to a 3-4 depending on who was checking. I wasn't effacing any though, and he wasn't descending so wasn't engaging and it just wasn't going anywhere at all. My contractions were really odd, too. They were super strong and painful - but they didn't last very long. Most were like 15-20 seconds, a few went on a bit longer but that was the average right there. I thought they should be longer & stronger. They were coming at regular intervals but really not much was happening - even after breaking my water. After 24 hours of starting the induction, and 12 hours after breaking my water, we came to the sad conclusion that it just wasn't happening. My doctor said she had suspected for awhile that my pelvis was on the narrow side, but she was still willing to let me try and hoping it would open up more in the end. This would explain the pelvic pain I had been having (SPD) - it was trying to open up - trying REALLY hard! - but it didn't do much in the end. After a LOT of tears we decided to do a c-section. They left me to get the OR ready for me, and I had a few more tears out. Suddenly everyone ran into the room, put me on oxygen, and said baby's heartrate was not being detected anymore. They tried to move the monitor around and couldn't find anything. I honestly hadn't even noticed, I was so worked up in my own upset. It all happened pretty quickly. They said there wasn't time to waste at this point and I found myself flying into an OR and onto the table, still in tears, freaking out about what was going on.

I guess this is a good time to note, I had an epidural, but it wasn't working right. My right leg weighed a ton, was totally numb and barely movable. My left leg was fine, tingly, but I still had some feeling in it, and could move it around as well as ever. I was still feeling the pressure of my contractions, and a bit of pain on the left side of my abdomen. I had mentioned this to my doctor, that it wasn't working 100% and so the anesthesiologist said he could fix it. They messed with it a bit, not sure what they were doing but I never felt any changes. This was all being done while getting things ready, and next thing I know they are poking me asking if its sharp, and I felt them cutting my left hip. I said it hurt, and they stopped. They tried a local anesthetic over my suspected incision area (my doctor - who performed my 1st c-section - couldn't even find the previous scar!) and it wasn't working either. They made a small test cut and I flinched. Next thing I know I hear "We're gonna go general" and someone asking my permission to knock me out. I said "Just do it, get him here safely" and next thing I knew a nurse was smiling at me and telling me everything was okay and done.

Ferris was fine. 8 lbs, 2 oz, an 19.75 inches of perfection. I wasn't so good though. In fact, I was in pretty bad shape. I lost a lot of blood, they nearly lost me, and came very close to needing to do a hysterectomy to control the bleeding. Turns out, while I healed beautifully on the outside, I scarred horribly on the inside, and had major adhesions. My bladder was stuck to my uterus, and had to be cut through to get Ferris out safely. So my bladder is a mess and I'm stuck with this freaking catheter until Thursday. Yay. Probably going to have a lot of problems with it from here out, but shouldn't be too bad they say. I'm also terribly anemic right now from the blood loss and incredibly weak. It's possible for me to still have more children - but I would need a much higher incision, and honestly, I'm terrified to even think of doing this again at this point.

On Ferris' 2nd day out in the world, he started experiencing some breathing difficulties and was found to have fluid in his lungs from being born c-section and placed in nicu. We're hoping he can come home on Monday... he is doing really well.. but I was absolutely terrified when they put him in there.

Anyway, I'm out of time, gotta go feed the little dude.

And yes, he was worth every bit of the trauma.

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