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

Awareness

While we all know that a pink ribbon means breast cancer awareness, I recently found out some new ribbon colors and their meanings.
Pale yellow ribbons are exclusively for spina bifida awareness.
Yellow ribbons mean many things, but spina bifida and hydrocephalus are two of them.
Purple also has many meanings, and the arnold chiari malformation is one.
While I don't yet know how our lives will play out or how each of these cureless conditions will impact my daughter throughout her life, I do know that Mira and everyone like her deserves for me to spread awareness. So I will get some yellow and purple ribbons, and I will wear them proudly!

Meeting Mira

Once Dustin and Aryanna came home, the next thing step was for them to meet their new baby sister. Dustin has understood that he was getting a new baby sister for a while now, and he's been very excited. But Aryanna just knew that Mommy had a big fat belly, and it was fun to poke my belly button. So now, it was time for all of my children to meet each other.
I held Aryanna while Dustin stood beside me and we looked into Mira's crib. Aryanna kept pointing at Mira and giggling, like she was a new baby doll toy and wanted me to hand her over. Dustin was cooing at her and saying "Awww" and asking if he could hold her. I told him he can't hold her yet, but he can touch her hands or her feet if he wants. He very gently reached into the crib and laid his one finger on top of her foot. I wasn't sure in that moment where this would be leading, or how they would handle how demanding Mira is for Mommy's time. But that's all stuff we'll figure out together as time goes on. Right now, it was just wonderful to have them all home and together.
Dustin was very curious and compassionate about Mira's incisions. He asked about her 'cuts' and said that Mira doesn't like cuts. He wanted to know why the doctors would do that to her. I explained that's why we were gone for so long, because Mira was sick, and the doctors had to give her cuts to make her better. He was okay with that answer. He also forgot about breast feeding, apparently. "Why are you feeding her with your boobs, Mom?!?!?" Lol! Then I reminded him that this is also how I fed him and Aryanna.
Aryanna is very curious about her, but doesn't yet understand how to be quiet or gentle, so I can't keep her too close. Aryanna is still at the stage where she thinks everything revolves around her, so she can't understand that she has to accommodate Mira.
All of this will be fine in due time, and right now, I'm just happy to have all of my children together, at home. The schedule is insane, meeting their needs feels like I'm running a never-ending marathon, and I'm trying to figure out how in the world I'm going to give them each the one on one attention they need and deserve; but my family is complete, and I wouldn't have it any other way!

The Kids!

Mira came home on Monday, and Dustin and Aryanna came home on Wednesday. It had been just over two weeks that I went without seeing Dustin and Aryanna in person at all. We had FaceTime and pictures, but I have never been away from my children for this long in their lives.
Having them home makes Mira's schedule even more difficult, and I knew this was how it would be before the kids came back. I knew that they would be driving me up the wall within ten minutes. I knew that as soon as Dustin walked in the door, I wouldn't get a moments peace because honestly, he never stops talking. I knew that Aryanna would be difficult because she's about to start walking, and she's in a demanding phase where she wants everything her way because she's exploring her own attitude. I knew both of them would be constantly seeking attention in disruptive ways because they're not yet used to having a new baby in the house; especially one with Mira's constant needs. While I knew all this before the kids came home... I couldn't wait!
Two weeks! Two weeks may not sound like a lot, but it killed me. It broke my heart every time I talked to Dustin on the phone throughout that time, and he would cry because he didn't understand why we weren't all together. It killed me to see pictures of Aryanna and know how big she was getting, and know that I was missing it. It killed me knowing that every day they were wondering why we weren't home, and that there was no possible way to make them understand. So even though I knew I'd be ripping my hair out once they got home, I also knew that I'd gladly go bald for that reason because I couldn't wait to see them, and hold them, and answer Dustin's 12,000 questions, and pick up Aryanna in all her chunky glory even though I'm still post c-section and not supposed to be lifting her.
My sister pulled in the driveway, and I was already waiting on the porch. I walked out to meet them, and Dustin ran into my arms yelling "Mommy!" Aryanna smiled so big while my niece, Nikki, brought her over to me. She started pointing at me was saying "Ma!" in a way that sounded kind of like she was questioning wether or not it was actually me. I couldn't wait to scoop her up in my arms, and that's exactly what I did! It was so relieving... Finally having them home and seeing their plump little cheeks in person! Knowing that the waiting was over, and I wouldn't have to keep trying to explain to Dustin why him and Aryanna were getting shuffled around, and why Joe and I weren't home. That was all over, and I could hug them, and take care of them, and tuck them in at night, because we were all finally home! All of my children under one roof, my roof, and that was that.

Interesting

There are little things that we have to do with her that I don't realize would be interesting to someone who isn't familiar with everything going on with Mira.
For one, we have to put her diapers on backwards right now and fold them down to keep everything away from her back incision. Dustin graciously pointed out that I was changing her diaper wrong because he saw me put her diaper on backwards. Hahaha. I told him we had to do it this way to keep her cut safe, and he said okay, but I forgot that this might seem weird to someone who doesn't know any better. A backwards diaper.
Another thing that I found incredibly interesting that we learned in the hospital pertains to Mira's shunt. She has a programmable shunt. This means they can change the setting of how much cerebral spinal fluid flows through the shunt by using a magnet on the outside of her head. They don't have to go back in to change the setting and out her through another surgery. The magnetic field needed is called gauss. The interesting part is that there are other things that put out gauss, so we have to keep those things away from her head. The most interesting one is an iPad (which I'm using to update this right now). We have to keep iPads eight inches from her head. If they get closer than two inches to her head, it could change the setting on her shunt. Also, if we ever go anywhere with security checks, like a court house or airport, and they try to use one of those wands to check her, we have to stop them. The wand puts out enough gauss, just being passed over the body, to reprogram her shunt. So we'll probably try to avoid areas like this. The day would not go too well if I had to tackle a security guard in a secure area. I imagine my bail would be reasonable, but better to avoid it anyways. Mommy doesn't need a criminal record.
While I'm glad that if the setting on her shunt needs changed, they don't have to do another surgery jut to change it, but it's also scary that other things could reprogram her shunt, and we wouldn't even know until problematic symptoms occur. Cool, and convenient, and scary, and very interesting, nonetheless.

Awwwwwww!!!

Sucking her thumb for the first time!