Wow, Ava was 6 months old yesterday! It’s hard to believe that we’ve had her for half a year already… it actually seems like longer, perhaps because it’s been so busy. 🙂
And she is still on the mend. She had a few more awake periods yesterday, which was nice to see. And although they had talked again yesterday about giving her a blood transfusion to up her hemoglobin levels which were low, they held off because they still weren’t happy about her fluid balance as they felt she was puffy and retaining too much fluid. So yesterday, they kept working on getting Ava to pee more, and gave her more drugs to help the diuretics, but when they looked at the numbers – her calculated fluid in and fluid out – nothing seemed to be helping.
Then last night at 3:00 am, Ava had a big wet diaper which was great news, and her nurse went to weigh it, but the scale said the amount in the diaper was only about 80 mls. The nurse thought that was strange as it felt much heavier so decided to weigh the diaper on the scale next door and guess what… the scale in Ava’s room was wrong!!! The diaper was more like 140 mls, which obviously meant that they hadn’t been able to get accurate amounts of Ava’s outputs for who knows how long, as the scale was under-weighing her diapers… grrrrr. So the poor baby had been made to pee too much, and ended up being very dry, and when they weighed her today it showed that she had lost a lot of body weight (probably mostly fluid), so that wasn’t too good, but but thankfully today they are trying to correct everything by upping her fluid intake and she did get her blood transfusion which should help to perk her as well.
She still has her cough and she still has gunk in her nose, and still isn’t feeling the greatest. But as the nurse said today, if you or I had what she had, we would be in bed and would have taken a week off of work. So it stands to reason that this bug has been hard to beat for our little Birdy with her not-so-great half a heart, as well as the stress of Saturday when she didn’t eat all day and had the picc line insertion, it’s just a blessing that she’s lived to tell the tale!!
But we praise God that He is healing her and for the fact that He is still laying her on people’s hearts and prompting them to pray for her. God is not finished with Ava – but I realized today that what I really need is a good dose of hope. I know that God is a God of miracles, and He could heal Ava and bring her a new heart, but I also know that He gives and takes away, you know what I mean? So it’s a very difficult place to be in – and I know there are other families who are dealing with similar situations – a place where you don’t know how to think or how to feel. Are we to look ahead with hope at bringing her home some day? Or should we be preparing our hearts (I don’t think we ever could) to let her go?
At this point all I can say is that we are looking forward to getting all of Ava’s pre-transplant testing done so Jason and I can have a heart-to-heart with the transplant Dr’s and see what they say. Hopefully they will say that Ava is a good candidate for a transplant, and that she is in a position to hang on for a heart, however long that might take. If they say something different, we will just have to cross that bridge when we come to it.
Regardless of what happens going forward, the six months that we have had with Ava have been a blessing and we count each day as a gift. But please pray that God would be gracious to us give us some tiny glimpse as to what our future holds with Ava. Our future with our sweet little 6 month old who needs a new heart.