Today is another waiting day. We really thought that today would be the day they would try to close Ava’s chest… but it didn’t happen. Alot of that had to do with her surgeon, he had 2 surgeries today and didn’t want to squeeze in closing Ava’s chest, just in case he wouldn’t be able to intervene if necessary, so it’s planned for tomorrow… so please pray!
And unfortunately it was a bit of a distressing day, mostly because Ava seemed really irritable and I couldn’t even touch her without startling her and then she would look like she wanted to cry… and of course she can’t really cry because of her ventilator and then that distresses me. Oh dear.
To make matters worse, last night they started to see some evidence of chylothorax… which basically means that during surgery Ava’s thorax may have been nicked, and now chyle – or fat is escaping into her chest cavity. Sigh. Right now just a tiny bit is chyle is leaking in, so they haven’t done anything about it yet. But if it starts to pool, they will pull her off of the breast milk they are feeding her through her nasal gastric feeding tube, and have to start giving her a fat-free formula for 6-8 weeks. It’s upsetting, but I just have to trust that God will intervene, heal her quick, or just give me peace about this situation. And I don’t think I had mentioned that they have been feeding her my expressed milk through her NG tube, and that is very good thing, and I love feeling like I’m doing at least something to help her. And eventually I would love to nurse her, but after meeting with the lactation consultant and a nurse practitioner today, I’m realizing that even though it is possible, it just might not happen. Again, something I just have to let go and leave in God’s hands.
Oh – and to just make matters a bit more complicated for us, our little Sarah (who is 5) has been drinking gallons and gallons of water in the past few weeks and it had made us a bit concerned – especially as the first thing that comes to mind is diabetes… AUGG!!! So as soon as we get her health card here, we will take her to a walk-in-clinic. We need to rule it out for peace of mind. We also need to lay it at the foot of the cross and just know that God won’t give us more than we can handle right now… please Lord, I don’t think I could handle this as well as Ava! So please pray for Sarah, that she won’t have diabetes, and that this is nothing more than a crazy water-loving phase.
But there is good news. Jason and I have been reading John Piper’s Advent devotional, and today it was about missions. But I found it very applicable to us. Here’s an excerpt…
In the mid-16th century Francis Xavier (1506–1552), a Catholic missionary, wrote to Father Perez of Malacca (today part of Indonesia) about the perils of his mission to China. He said,
The danger of all dangers would be to lose trust and
confidence in the mercy of God… To distrust him would
be a far more terrible thing than any physical evil which
all the enemies of God put together could inflict on us, for
without God’s permission neither the devils nor their
human ministers could hinder us in the slightest degree
And it’s true, we can’t lose our trust and confidence in God. Not through the terrible things, nor the waiting, nor the setbacks. And I’m so thankful to my friend Christa who made this reminder for me which now hangs over Birdy’s bed…
And I love remembering that His eye is on our little Birdy, and He loves her more than me, and I don’t have to fear for her or be distressed. Thank you Christa, for the reminder. And here’s the verse where that is taken from… Matthew 10:29-30…
29 Are not two sparrows sold for a penny?Yet not one of them will fall to the ground outside your Father’s care. 30 And even the very hairs of your head are all numbered. 31 So don’t be afraid; you are worth more than many sparrows.
This is not an easy road and believe me, I’m not stoic. I’ve shed gallons of tears, but I kept being led back to the grace and mercy of God in our lives, and I’m so thankful that His eye is on the sparrow, or in my case, our little Birdy Ava Samantha Grace.