I am definitely guilty of having this fantasy that once we went home it would be all magic moments, everything would feel happy and easy. That hasn't exactly been the case. For as amazing it feels to have everyone under one roof and to see Cora in normal baby settings, it has also been pretty stressful, a lot of work, and even at times, scary.
Caring for Cora is definitely a full time job.
As I mentioned the other day, just the meds alone are a lot. But there is also the task of keeping her continuous feeds going, of staying on top of more or less constant throwing up, of re-taping her oxygen and feeding tubes if they get loose (and hurrying to do so when needed, before she yanks her feeding tube out), of suctioning her nose and mouth regularly so she can get the oxygen she needs, and of troubleshooting the medical equipment under the enormous pressure of beeps and of Cora turning colors. In short, it's stressful. Oh yeah, and we have two other toddlers!
Anyway, we are really doing okay despite everything. But I think I was just under this illusion that we would have a "well" child when we came home, and instead what we have is a very happy, much better, but still very sick child.
Still I am determined to gently introduce Cora to some normal life activities. So yesterday we went for a little outing with a friend in the afternoon to a nearby park so the kids could throw rocks in the creek, and so that we could get outdoors. Cora loved looking around at all the trees, and you could tell she was happy in the open air. Today Jason had to work so the kids and I took our operation to Grammie and Papa's house, our home away from home. Cora played on her little activity mat, the kids swam, and it was all in all a very ordinary, normal Sunday afternoon. Well, as normal as it can be.
And tonight I gave Cora a bath and she smiled so big. Then I dried her off in her little hooded lion towel. There she was, as I've always wanted, just a little baby in a fuzzy towel.
Despite all the stress, the benefits of course win, by far. I have these moments where I think, "how long will Cora be this sick?," or, "how in the world are we going to be able to do this?" But then, inevitably there is some grounding moment, something sweet or wonderful, or maybe something that requires urgent attention, and I have to remember to just do now. Don't get too overwhelmed, just see what's next. We will work it out. We always do.
It does make me wonder what I thought was so hard about having a healthy, typical newborn. Especially just one of them. Which, at the time, I remember thinking was very hard.
In light of all this I probably won't be writing nightly blog, but maybe I will. As with everything, I will just try to take it as it comes and do my best. Thank you for being here with us, and for caring about our story.
Cora, you fill my heart full of joy when I see your pictures every day!! you make my heart melt too when I see what you have gone through in your short life...Iam a very firm believer in prayer and you are and have been at top of my list>> You truly are a miracle baby in my eyes and you always brighten my day when I have seen that you have made it through another day!! You tell your momma and dada in your own little way that they are doing a beautiful job with you<3
ReplyDeleteDeep breathing and just taking one step at a time, that's all you can do Momma! You are doing swimmingly well! We are all cheering from the sidelines and wishing you well.
ReplyDeleteYes, I agree just keep breathing, just keep breathing...Put on Finding Nemo! You guys are super everything! Your other 2 are precious little pumpkins aren't they? If Dom is the sge prophet, soon he'll hold out the hand and say "Mom, let me pull the night shift, I have this, Cora and I, we're good". I'll pray that God gives you an inexplicable reserve of energy, clarity and confidence. She'll heal past this, you are doing great Mama!
ReplyDeleteYou are doing a great job Michele and I have tears in my eyes seeing little Cora in her lion towel with those chubby little arms :-)
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