Wednesday, December 10, 2014

Finding both sides

I recently received an email from a mom who had to say goodbye to her beautiful daughter far too soon. Many things struck me about this email. First and foremost, the fact that during what was, I can only begin to imagine, an extremely difficult time in her life, she reached out to see how Thomas was doing, is incredible. She shared with me the struggles of being a special needs mom and the obscene amount of worrying that goes into your everyday life, but most importantly, she shared with me that she was able to celebrate as well. It took her a year to be able to realize that everyday she got to spend with her daughter was a celebration. This hit extremely close to home and as I thought more about it, it became quite upsetting that I wasn't enjoying and celebrating Thomas. Little babies are meant to be adored and squeezed and gushed over. I have never been great with the gushing thing, but I do love babies (well at least since we started having them, before that I wasn't sure about them and they weren't so sure about me, but it's water under the bridge now and we are all good).  I do love Thomas, more than I can even begin to put into words, but I haven't really just sat and enjoyed him, just held him and rocked him and listened to his little baby snore or smelled that sweet smell of rotten milk in his rolls. Our moments have been consumed by fear and worry. By planning and worrying about not being able to plan. By focusing on everything that he won't be able to do and what he will miss out on. By analyzing every sound he makes and trying to decide if it is normal or if I should be calling someone. By always stretching him and making him work on his PT exercises. Even all these blog posts are about hospital visits or sickness. Never just BEING with him and letting him BE with me. This is a mistake and I am missing out on HIM. I am so worried about him that I don't see him. So I have made a conscious decision to just be with him when I have those little stolen moments of just Thomas and I. You know what I have found, he's awesome. He smiles when he hears my voice and it's that heart melting little toothless baby smile that starts in their eyes and glows over their whole face, he loves massages, he loves laying on his side and when you squeeze his wrists while holding his hands. Although we aren't sure what vision he has, he is always scanning the room, he looks around with the funniest little expression of curiosity. He smiles when his brothers come over to talk to him, but he waits until they walk away to give the smile, I like to think he doesn't want them to know how happy he is that they were paying attention to him, you know, playing the hard to get game, I can get on board with this kid! His lips are beautiful, even when he is crying, they have the perfect shape. He is almost 5 months old and I have allowed myself to miss too much of him becoming him.  He deserves to be celebrated and I wasn't doing my job. I am realistic and I know that I will always still worry, but this mom gave me such a gift to make sure I find the celebration too. Give the worrying about what will happen to him and what challenges he will face a break sometimes and celebrate the kid that he is RIGHT NOW because, just like those other two little adorable weirdos in my house, he is going to grow too fast and I won't be able to squeeze his wrists whenever I want.

Monday, December 1, 2014

Where in the world is Thomas

I will give you one hint...you don't need a hint. We are back in the hospital. His stridor had increased in both frequency and volume and he had a fever and was very listless (I was told to be very picky when using the word lethargic). So we drove to the ER in Cincy early this morning. His oxygen level was pretty low, 80's, so they put him on oxygen right away and eventually moved us up to the PICU where he is on heliox. It is a futuristic looking machine. 

But it does wonderful things for Thomas's breathing. He is silently sitting here awake and happy, which is rare, if not unheard of. 


He also loves Super Tom on his head like that, so really it is a bad experiment. Is it the heliox or is it Super Tom (THANKS RATHJENS!). Doctors may never know...

They aren't sure what is wrong with him, so we are going through a process of elimination trying to figure it out. Chest x-rays, airway x-rays - on a separate note I am excited to see what super power he will end up with from all this radiation - ENT scope, steroids, etc. In the process of writing this, they have decided it is a bad case of croup. So we just have to support him through it with help breathing on the future machine and possible breathing treatments. Not awful news. Unfortunately though, when they were telling me about what they saw on the scope, they mentioned that he still has vocal cord paresis. We were hoping that he would regain use of those vocal cords after the decompression surgery. Which is disappointing, but not a complete surprise. It just means that later down the road we will have to a procedure of some sort to help him open his vocal cords all the way. For now we wait and hang out in the hospital and let the croup run it's course...with our music on!