About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Thursday, May 9, 2013

False Alarm

Today I had to come to the realization that I'm going to have to adjust to being scared and clueless.
Last night, all at once, multiple things started happening that caused me to be concerned for Mira. While none of them were immediately life threatening, they still scared the daylights out of me, and I was scared until we took her to the doctors today just to find out everything was fine.
So, right before her 10pm cathing, my sister was feeding her and looked at her abdominal incision. Right in the middle of the incision, it looked like it was coming apart. The suture over the middle part had dissolved, even though the rest of them are all still intact. The skin, which is completely flush and together on the rest of the incision, was pulled apart and I couldn't see how deep it went. I wasn't going to pull to try and see and possibly cause damage. So instead I pushed around the incision gently to see if anything could come out of it. No drainage was coming out, no blood, so that was a good sign, but I still did not like the way it looked. I have never been a fan of her abdominal incision because she's constantly on her belly. This has caused her abdominal incision to always be red and irritated. So while the rest of her incisions look really healthy and are completely normal colored, this one has always been red and swollen. Mommy's not a fan.
Then, at her 10pm cathing, which we're still barely getting any urine out per cath (yay!), debris came out in her urine. I've never seen this before, and this can be one of the signs of infection. At this point, I was feeling the urge to rush her into the emergency room, but I knew that would be over-reacting. So I put the urine in a sealed specimen cup, marked it, and put it in the fridge. I documented my concerns for the evening in Mira's log book, and made a mental note to call Georgia from the spina bifida clinic in the morning and call her pediatrician to see if they could get us in to look at the incision.
So this morning, I call the pediatrician about the incision, and they said they could see us in the afternoon. Then I called Georgia to talk about the incision and the urine. Georgia said sediment in the urine is actually really common, but to only be concerned if she is also not eating well, not peeing well, and/or is running a temperature. I had been taking her temperature regularly, and it was in normal limits, so everything there was actually okay.
We went to the pediatrician's office where they looked and it, and said it was a beautiful incision, completely intact, and healing very well. Apparently the part that is split open is only the very top layers of skin that are swollen. Once the swelling goes down, we will be left with a completely flush, no gaps involved, barely-there scar.
So, by the time this morning hit, I was getting ready to rush her to Pittsburgh. I felt like something could be terribly wrong. But the main reason I felt that way is because honestly, I was just so unsure! It scared me to death to think that all of the scary symptoms, and bad things that could go wrong, and things to look out for all the time... Well, the thought that one of those things could have been happening struck fear into me like no other. It made me so unsure of myself, made me feel like I have no clue what I'm doing, I was questioning myself about everything I may or may not know here. Am I being too thorough? Was I not being thorough enough and that's why something bad is happening? Are they gonna think I'm a hypochondriac? Are they gonna think I neglected obvious signs and that's why this happened? Is this something serious? Is this nothing at all? ... Honestly, I had no clue!
But by the end of the day, I think I actually did exactly what I should have done. I contacted the right people. I got her checked out. She's okay, everything's okay, and it's all going to be fine. So even in my panic of doubting myself and feeling completely helpless in my own panic, I still was capable of doing what she needed me to do for her! I still functioned, I still got her to the doctor, I still asked the important questions, and I'm still not throwing that urine sample away until there is no doubt in my mind that she is 100%! Too thorough? Maybe. But I'd rather provide too much information opposed to not enough!

For Mira

So people say you're different
I say they're not to blame
Society teaches others
We're all supposed to be the same

How glad I am you're different
Miraculous in the least
You've fought battles in your body
From your head down to your feet

What is spina bifida?
It ranges drastically by far
And while it does not define you
It's part of who you are

Wether you walk, crawl, or roll
You'll show inspiration to the rest
So while, yes, you are different
You will never be less

While your struggles may be more obvious
We all have struggles too
We all need some miracles
And that miracle is you

From Dustin and Aryanna
And from Daddy and Me
Along with God and all the people
Whose support is always seen

We love you, Mira Cole
And that will never change
You are Mommy's hero
You inspire me every day

I love you, Mira Cole McGuirk
Love, Mommy