Directly into a rush of chill. Directly into a wall of frost on the windshield. My daughter would probably blame it on Frost Fairies {we've watched a LOT of Tinkerbell these last few months!} I'd only thrown on my fleece jacket, forgetting my gloves and my signature scarf. I live in scarves. I forgot it. I thought it was nice enough without it. Of all days. IT'S COLD!!!! The beautiful birds were NOT outside, they were on Chloe's sound machine in her crib. Seriously, folks. The sound machine tricked me. And it's cold. My awesome minivan said it's only sixteen.
But that's kind of been the rhythm of the last two months. We keep getting tricked. We plan on appointments and vent weaning and excitement in her getting bigger, and are tricked when she catches a virus and has a set back. We went from nine hours a day off her vent to every minute of the day back on while she fought her virus. We went from week to week rescheduling and rescheduling appointments at Children's because of the virus, then snow, then the second part of the virus that hit her, and each day we thought she was getting better, she'd throw us off and decide to start a fever or runny diapers. She kept us on our toes with this/these virus(es) for the better part of 3.4 weeks.
But we're so close. We're so close to her getting her Glenn procedure-the heart surgery that will involved bypass. Chloe's heart cath, to check all pressures in heart and lungs, was supposed to be yesterday. But with the virus, we pushed all back. She's got to be tip top and spit spot before that procedure. So we start the clock again, and wait for her to finish up her inhalers and be completely better. Then we start the clock again, and four weeks from that moment will be her heart cath. And four to six weeks from that will be her heart surgery.
The clock is always there. Time is always moving, and yet, even still, stands still a bit for us. We've made big changes. We're still waiting on one of our nursing companies to help us find nurses for two days of the week, so between those days and my husband's two days off, we do half the week ourselves right now. We've stepped up and grown in confidence, and now do it by ourselves, a feat we never imagined we'd be able, or comfortable, to do. We trade off a few hours by ourself so the other can get out for a bit, run errands, start to actually grocery shop again, or grab coffee with a friend. It's happening, slowly in chunks, and we pray daily for wisdom and guidance and skill. We pray for no emergencies while there's only one of us there. But we do it. And it's giving us a glimpse of "normal" and of what days might be like as Chloe gets older and we can do more and more ourselves and less and less require nursing and others to help out. To feel completely our own family. to be a family of five and not need additional help coming through our door, not because we don't want it and appreciate it, because we've appreciated every single ounce of help, but simply because we've only tasted a few gentle moments of that serenity that is our family alone under one roof a few times since we brought her home.
This is what our house looks like on "normal" family days. Days when I'm the mommy and the nurse all wrapped up into one...
Me, catching my daughter through the window of her doll house. Her, "I no pick my nose!! I wasn't picking my nose, Mommy, I wasn't!" Riiiiiight.
"I'm Obiwan Kenobi. This is what he looks like back when Anakin was little."
Me, "Doesn't that hurt your ear?"
Son, "Nope."
I seriously clipped it onto my ear just to make sure. He's good. It's all good.
This precious moment was followed shortly with my three year old stripping down beside me in the front room and saying, "Mommy, can you help me go waters?"
"No, I have to stay here beside baby Chloe."
"Oh, ok, I will go waters all by myself then." {Strips down beside me, still in the front room}.
"NO, go do it in the bathroom!! You might have an accident here if you take them off here!"
"Oh, right!" {Runs with bare naked bum and pants around ankles past Obiwan and past Chloe's vent, waddling quickly with Elsa unders tangled in her ankles to the potty}.
Meanwhile, #3 is now sleeping peacefully during her morning nap. You know, after I attempted playtime, then managed to make her upset when I tried her hearing aids for the first time in weeks. She wasn't thrilled. I think she still has fluid in her ears hurting her. But a few suctions, hearing aids taken out, and two books later, she's asleep. Ish.
So things have begun changing. We're doing more on our own, we're not taking risks doing it alone so much as gaining in knowledge and growth as mentioned above. And it feels amazing. It's those days that I finally feel like a mommy of three, not a mommy of two with a nurse caring for my third. I can't explain that any other way other than to say she feels completely ours on the days when we don't have nursing. And gives us hope for the future. And doing it alone gives me a sense that she's really mine. We're really doing this. We're wearing many hats, we're nurses and doctors and therapists and real life jobs along with that as Alan leads and works and I design on the side and as I homeschool my preschooler. We're doing this. All of this. All of this that seemed impossible when she was first born, and a mere dream when we didn't know if she'd come home from the NICU. We've hit a rhythm, finally, and we're doing this. And even though it's crazy, and busy, and a wild ride, we wouldn't have it any other way.
It's still a long road. Many babies waiting for their Glenn procedure, sadly, do not make it. Chloe's rocking it. She's thriving right now. She just cut her first two teeth!!! Try giving a cleft lip baby a teething ring...it ain't happenin! Try giving a cleft lip baby a wet and frozen gauze to gnaw on...she wouldn't do it! Try rubbing your finger along the gums to relieve pain...she'd gag. It was a fun little ordeal, but she did it and we all survived. She's still trying desperately to push her trach tubing out of the way to roll over more. She's holding her head up. HOLDING IT UP!!! Almost consistently these days when we sit her up. She's growing and gaining so much strength. We got the go-ahead to start her HME trials again as of yesterday, so the weaning begins again! Her docs want her off the vent, at least during the daytime, by heart surgery for best outcome. So we begin, spreadsheet of trials off and olympic-worthy HME workouts for our little champ.
We are so, so blessed to get the front row seat to see each new thing on each new day. We do not take a single day with her for granted. Some days require more coffee, some chocolate, and some require three changes of pink and teal and purple tutus {not for me, my 3 year old}, but NONE are taken for granted.
Spring will come soon. Cath will happen soon. Birds will start chirping their songs earlier and the Easter season will bless us and little girls will twirl in pastel dresses soon. And we'll embrace it all. We'll put this long, cold winter behind us, yet take with us each memory made within the four walls that kept us warm and healthy from germs this year, and face the days ahead with joy, knowing that the Lord will carry us through this coming season of surgeries and thank Him for blessing us with her thus far. He hasn't let the waters overcome us or the fire burn us yet, nor will He ever. {Isaiah 43:2}
God is good. And we rejoice that SPRING is on the way!!!
...and then this happened an hour after I wrote the post...been waiting since Christmas for her to have enough energy to get out of that crib and really play with us!!! So today we praise for no more Lovenox, and ready for play!!!
Yay Gerlings!!
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