Today is Charlie's 15 month birthday and we're spending it in the hospital. I usually try to stay on the positive side when writing Charlie's birthday posts, but that's not going to happen tonight.
Last night was a rough night. It was difficult to get Charlie down to sleep and even after we finally did, she woke up crying several times. Matt and I chopped it up to her molars coming in, and just made sure to dose her with Advil before we finally hit the hay at 1:30am ourselves. Charlie was really snoring up a storm and her breathing sounded really 'crunchy', which isn't totally unusual for her, her secretions pool in her throat and she always sounds a little 'crunchy' and 'gurgly' like she's Listerine-ing at the oddest times...usually when she's delighted with something. She tends to gurgle when she's showing off or excited about something, but can't find the words to express herself, so instead she gurgles and makes super animated Groucho Marx expressions with her little red eyebrows...so, what we usually think of as cute and very 'Charlie' was actually difficulty breathing and managing her secretions this time. It's so hard being a first time parent with a sick child and trying to figure out what's normal and what's not, what's just Charlie, and what's cause for alarm?
Anyway, I was up all night and swapped with Matt at 8am this morning and went and slept in Charlie's room/the guest room. We were meeting with a Social Worker at 11am and I wanted at least a couple of hours sleep before we began discussing feelings and Charlie's condition. I NEEDED sleep to handle and process those things. When I (barely) woke up, Matt and I fed Charlie and noticed that her nose was really runny and her breathing sounded more labored than usual, we still tried to convince ourselves it was due to her teething, but after awhile neither of us were buying that weak explanation, and we just knew it was a cold, a cold that we had managed to outrun for 11 months since her diagnosis. It was a sad day at our house today, it felt like the first domino had fallen. Even though we knew it was inevitable that Charlie would get a cold, we had let ourselves down. We failed. When you out run something that long, I think you start to believe your invincible, but, the truth is, it probably wasn't so much of what we were doing all along, but it probably had more to do with luck as to why Char hadn't had a cold yet. Yes, we kept our hands clean, bathed her often, kept her away from sick people (to the best of our ability) and cleaned out her nose on a regular basis, but it wasn't going to work forever...even a great goalie can't block every goal from getting in...colds and germs are relentless, and they'll sneak past you when you least expect it. That's not to say we won't remain diligent in protecting Charlie from germs in the future though...actually, we'll probably become even MORE protective of her.
My friend Christie asked me a few weeks back, "So, what actually happens to Charlie when she gets a cold?" And I explained it like this: The first one or two colds probably aren't actually going to be her end, but, it works more like strikes...each cold Charlie gets works as a strike against her. She can't clear or move her secretions very well, so they just build up, making her more weak, more prone to infection, and less likely to handle the next cold. I sort of think of it as her lungs starting out as an empty glass that slowly fills with fluid, one cold at a time, until it overfills and isn't able to do its job anymore. So, i guess, we're on strike one.
Rewind to earlier today...Matt and I were talking to the Social Worker when both of us became more honest about our feelings about everything that's been going on, than we've been in a long time. It's been a long time since we've been in the presence of a neutral party who's sole purpose was to delve into our emotions and figure out what we we need as individuals and as a couple in the middle of a very sad situation. Matt and I seem to forget that. We are almost used to feeling alone and disconnected, and we're getting used to having a child that we're told will never really move, and won't live long. It's REALLY sad, yet we seem to think we're just supposed to buck up, put on a happy face and get over it and move forward. I often feel like I'm in a bad made for TV movie about me, and starring me...it just doesn't feel real half the time, and when it does, I feel like I'm being too dramatic about it all, and I think, "Jesus Cherie, it's been 9 months since her diagnosis, when are you going to stop talking about it and move on with your life...wah, wah, wah!" Really. I confuse myself as to why we can't just be happy she's here still, and keep on keeping on. And Matt feels the same. I realized today when we were talking to the Social Worker that we have a lot of similar thoughts, but we don't share them with each other, and it alienates the other and contributes to our own individual inner guilt, allowing it to fester and grow out of control, building shame and anger. For example, I LOVE Charlie, Matt LOVES Charlie, but today it came out that we have both, individually and secretly, thought, "Please end this soon so I can take off and start a new life and try to forget this one ever happened." Not something you really want to share with your partner, not something you really want to keep to yourself either. And no matter how guilty and ashamed it's made me feel to think, it felt good to know Matt has felt the same way too...let's us both know it's natural to feel that way sometimes. But, now that she's actually sick, we're feeling ashamed and guilty again, wondering if the universe heard our thoughts. If so, we didn't mean it!
After the Social worker left, I cried some more, got myself together, told Matt to call our pediatrician, knowing full well we'd soon be headed to Children's Hospital, and went and took a bath and a nap before packing our bags. I know how it works now, here at the hospital, Charlie fusses all day and night because it's an unfamiliar, yet familiar place, because people are poking and prodding her, she sleeps with me at home, so I end up 'sleeping' in a tiny crib with her, spending my night adjusting the machines she's hooked up to, to stop/avoid the random beeping in the middle of the night that without a doubt will ALWAYS happen..ALL. NIGHT. LONG. When we got here they took a chest x-ray, took a sample of Charlie's mucus and blood, and put us in our own room in ICU. Then they went over the DNR (do not resusitate) orders with us, and asked us what we wanted to do if a situation should ever arise where they needed to perform CPR or put certain machines on/in her. I honestly don't even really remember what I said, I seem to blank out in those situations. But, holy...the hospital makes me cry EVERYTIME! Its a reminder of how serious Char's situation really is, and of how many other little sick kids there are too.
As for her cold, so far she's doing OK. She's so tough. She's actually still up, at 1:02am, singing and watching Elmo. We/they have just been monitoring her blood pressure, heart rate, breathing, and suctioning her secretions, seeing what, if anything happens next. Hopefully this is the most extreme the cold will get, and she'll get over it quickly without any complications. Please send good, positive, happy thoughts Char's way.
* Just found out that we're here for at least a few more days. They are worried Charlie could form a 'mucus plug' which she could choke on. She'll be on her bipap (breathing machine) full time, and they are performing chest physio a few times a day on her, trying to loosen things up. Again, the doctors went over what our wishes are regarding life saving techniques...and it's got me emotional. We went over the positives and negatives of all the possible interventions, and it really hurts to think about...the doctors have warned us that a seemingly happy and healthy looking SMA baby can go from good to bad really fast, and without warning. Hopefully we're a long way away from any major decisions having to be made/carried through.
Happy 15 month birthday Charlie! You're a very strong and brave little girl, and we love you so much!!