It has been so crazy around here… crazy and busy and I’ve been so tired, so I apologize for not blogging.
Kinda crazy too because Ava hasn’t been doing that well. Too be honest when I saw her yesterday afternoon I was pretty sure that we were losing the fight. Ava’s heart-rate was up and she had a fever and was restless, and nothing seemed to be working to calm her down. They had tried morphine and a sedative and Advil and Tylenol and she was still restless and irritable. Her feet and hands were dusky and she is still so puffy, I know she is still extremely fluid over-loaded. So yesterday afternoon was really hard, and very very emotional.
So when the PACT team came by, we discussed how to keep Ava more comfortable and they thought that maybe pain wasn’t Ava’s problem, but maybe she was feeling anxious, with breathing being so difficult and with her heart not working well. So we decided to swap out morphine for some anti-anxiety meds. We gave her a dose right away and it seemed to help and that was great. She woke up a little later and even though was calm, you could tell that she was a little befuddled… the cocktail of drugs that she was on was a bit much I think. And then I just start feeling bad for her. She hasn’t really smiled in days and I know she’s not comfortable, but waiting for a heart is like having a carrot dangling in front of you… you don’t want to give up the fight in case the heart is right around the corner. But once again I was praying that if God was calling her home, that she would just go, that we wouldn’t have to take drastic measures like turning off her heart meds or take away her CPAP. Jason and I both don’t feel right about doing that, and really, I know that neither of those things can really keep her alive if it is her time to go, so I take comfort in that.
And then just before I left the hospital yesterday, when I was feeling so low…. the Cardiologist Fellow came in. He is from Singapore and he is wonderful and kind and really knows his stuff, and he’s a believer to boot!! He said that he thinks that Ava needs to lose about 400 grams of fluid and once he can get her back to real or ‘dry’ weight, she will feel so much better. And then once again I feel kinda astounded by God. Here all afternoon I feel like I need to prepare myself to let Ava go and the writing seems to be on the wall, and then a doctor comes in and says that he believes there is still hope, and what he is saying makes sense. And then I realize that when I try to guess at what God is going to do I never seem to get it right. I just need to have faith and wait.
And Ava had a good night last night, but this morning at 6:00 am she was awake and really restless and irritable, like she never really has been before. Again they gave her every drug they could to relax her and finally she slept again. And then later this morning when she woke up I gave her a little bit of milk to drink, like I always do, but when I was done she freaked out. So I gave her a little more and she drank it like she had never seen fluid before. It kinda dawned on me that maybe she was just incredibly thirsty. Which would make sense… she has a set amount of fluid she is allowed to take in during a day, so when she started IV antibiotics last week, they took away fluid from her feeds so it wouldn’t be too much. But IV fluids tend to collect in wrong places, and that is probably how she got fluid over-loaded. So now they are trying to dry her out, so they haven’t given her all her fluid back to her and so she probably is thirsty poor baby – thirsty like every other cardiac kid on the ward. 🙂 But hopefully in a couple of days she will have lost this extra fluid and we can increase her feeds and she will feel better. That is the hope, we will see what happens.
I know I don’t have to ask you to continue to pray, I know everyone is praying. God has been so good and so faithful, and I know that He is carrying our little Birdy under His wing and I know He cares for her so much. And my friend Christa posted this poem in my comments, but in case you didn’t get to read it, I thought I’d put it here… it’s so perfect.
Things don’t just happen to us who love God
They’re planned by His own dear hand,
Then moulded and shaped and timed by His clock;
Things don’t just happen, they’re planned.
We who love Jesus are walking by faith,
Not seeing one step that’s ahead,
Not doubting one moment what our lot might be,
But looking to Jesus instead.
We praise our dear Saviour for loving us so,
For planning each care of our life,
Then giving us faith to trust Him for all–
The blessings, as well as the strife.
Things don’t just happen to one of His own,
To one that has taken His stand;
No matter the lot, the course, or the price,
Things don’t just happen, they’re planned.
(by Esther L Fields)