It seems like we do a lot of waiting around here.
We waited for her to breathe on her own, waited for her to get off oxygen, waited for her to come home from the NICU. Waited for weight gain, waited to see if this medicine would work or what that formula would do, waited for bloodwork to come back. We wait for her to meet milestones, still waiting for that weight gain, waiting for answers. To quote Dr. Seuss –
“sometimes all you will do is just sit around and WAIT.”
So now we wait for Wednesday and we wait for Thursday and we wait to see what they will say, and what tests they want to run and how long we have to wait for them to be done and for results to be in.
And guess what?
I HATE WAITING. I have the patience of a flea. I am not even sure if they have patience but if they do, it is in miniscule supply – and THAT is how much patience I have for things. And God, in His humorous way, is teaching me to slow down, and just WAIT. Wait for Him to reveal the bigger picture, the better plan, the ultimate answer. I was struck by a verse in Habakkuk (I know, of all places right?) — “Though it linger, wait for it.” God knows how impatient I am, how we all can get sometimes. And he tells us right there in black and white – “Look, I know it seems like this is taking FORREVVVERRRR, and trust me, you really have no concept of forever at all. I know these days and weeks and months seem to be dragging on, but I AM IN CONTROL. And if you really believe that, and have faith in that, then just chill.”
And so that’s where I’m trying to be today. Just chillin’. Packing a few things here and there for the trip up, making plans for Thursday’s appointment/childcare, making some cupcakes. Kendall has been a little off her game since Saturday afternoon – just not tolerating her pump feeds but having no real desire to eat a lot by bottle. She’s getting her “Kendall fevers” which aren’t that high according to thermometers, but she feels like her skin is burning up. What’s going in is definitely not what’s coming out and again I have no idea where she puts all of it. It’s just been one of “those” kind of days. But today, even though she was still fussy, she is back up to full strength feeds. She wanted to play on the floor with me while her sisters were all otherwise preoccupied. I think she is going to be very close to sitting on her own soon (before ten months I bet!) She is finally starting to show some “ooomph” towards being a real baby, vs. being content to just be laid wherever and watch the action. It is such a good sign. And of COURSE she would have to be at her best ever the week we finally get in with these specialists! I have little to no doubt that by Friday she’ll be huffing and puffing to breathe and having bad diarrhea and in general just a mess – simply because I know that’s how my children are. Practically knocking on death’s door when I make appointments, and the epitome of fresh faced health by the time we get to the doctor’s office. Followed up by a grand finale of more sickness after the docs have already dismissed me. *shrug* Surely they get that from their dad…
anyways – I have felt very distracted today by thoughts of what will happen at these two appointments. Will these doctors listen to all that she’s been through and try to see the big picture here? Or will they tunnelvision down to one or two symptoms that seem to be resolved and send us on our merry way? Will they want to admit her for testing? Or just schedule a few outpatient days spaced a few weeks apart? Will they want to test her for things that make sense to me (you know, with my faux medical degree and all)? I haven’t gotten quite worked up over it – but just a level or two below that. I just want to be HEARD by them. I want them to see not the happy baby who I will be bringing in, but the baby who we have lived with and labored over and prayed for just to keep her alive the past 8.5 months. I want them to see that her current state of health is no fluke, but rather a precariously balanced house of cards and meds and elemental formula and therapy and countless countless hours poured into her wellbeing. And i want them to give me answers and a plan and some HELP for her.
But then again, maybe that’s asking too much.
I don’t know. I do know that i have to start focusing on something or else we are all going to be wearing the same clothes for three days straight and the dog will be left to his own devices here in the house.
So – there’s your dose of randomness for the day.
thanks for checking in – it helps to know there are so many of you out there rooting for kendall, praying for us, going through this craziness with us.
hope your monday has been much more productive than mine has!