I will be so glad when my cold is over! But boy, are we glad to hand Rachel over to the nurses at the end of the day and know that she will be well taken care of all night. Rachel is doing really well!! Amazingly well, in fact. She is no longer throwing up - the rice milk is doing it's job. She rarely coughs these days too. She isn't constipated anymore. She gained weight. She is now 6 lbs even! She has a layer of fat around her that she didn't have a short time ago. She is holding her head up a little bit! She is smiling and communicating with us a little too, making little sounds when we talk to her.
And her oxygen levels have stayed high! You may remember that her levels hovered around the 50-60 mark for most of the last 3 months and then suddenly shot up to 70. It is still in the low 70's. Our cardiologist said it might have something to do with other arteries going into the lungs - they may have expanded a bit to allow more flow. (not only are her pulmonary arteries abnormal but all the arteries going into her lungs and this kind of contracting or expanding is typical of this type of artery) She wasn't surprised by it but she said that perhaps we will have Rachel with us much longer than we first thought. This possibility used to scare us - we knew that the longer we had her, the harder the grief would be. Yet this time was different. Dave and I both were surprised at how GLAD we were to hear this. We feel like cheering this little girl on...This little girl who is so bravely living her life. (in Dave's mom's words) And we felt so happy about having her with us longer! This was really the first time this produced this kind of response in us and it took us a bit by surprise.
Our Cardiologist is planning to ask one of her colleagues in Toronto to look at the echocardiogram for us. It sounds like these echos can be pretty tricky to read, especially when the arteries/veins, heart structure etc..are as complicated as Rachel's. I appreciate our Doctor and her interest in finding out all she can about what is going on inside her heart. We are so glad both for her expertise and her caring manner. This applies to Rachel's whole support team. They seem so eager to figure out ways to help her.
So much has changed since those early days after Rachel was born. We used to think she would be gone or start deteriorating anytime and that thought affected every thought of the future, every plan. For example, I even wondered if I should put Ethan into playschool because our lives seems so topsy-turvy. We have lived away from home almost as much as we have been at home this summer. When others wanted to make plans a week or month down the road, we used to say "well, we will see how Rachel is doing." It was hard and exhausting, living like Rachel might die any day. We can only live that way for so long. I did put Ethan in playschool and even though I don't know how it will work, I am very glad I did. Please continue to pray for us as we learn to navigate this new 'normal'. There are times when I feel like everything is possible and God is in control and then other times when it feels like the complete opposite is true. I usually feel the latter in the middle of the night when I am feeling desperate for sleeep...so I know I can't put too much weight on these feelings. But in a way, it does feel like life as we knew it before is 'ruined'.
I was thinking this afternoon of a Isaiah 43:19. Just previously in that chapter, God talks of how He saved the Israelites by opening this path through the sea and drowing the Egyptians who were pursuing them - no small feat. And then He says, "But forget all that - it is nothing compared to what I am going to do. He says, " For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland."
I love that picture. I love knowing that God is actively, right now, doing a new thing in the wildernesses and wastelands of our lives. I often don't feel that way when I am in the middle of the wasteland - at times it is hard to see that God is doing anything at all. I feel lost - and the road we are on, endless. But when I look back at previous times when life as I knew it was "ruined", I can see how God did something new and good. And how it looked like nothing I had seen before. How I was never the same again..and I wouldn't want to be.
I am not saying that I think the new thing God is doing, is fixing Rachel's heart. He might be. But that wasn't what I meant. As far as we know, Rachel's heart situation is unchanged. And there is no surgery to fix the problems she has right now. But I do believe that God is at work, in unseen ways, right now....He is using this 'wilderness' to shape us into the people He wants us to be. I think that when we look back at this time, no matter what the outcome, that we will see how He was at work. My Grandma Plett had a favorite song. The words were "My Lord knows the way through the wilderness. All I have to do is follow." It expresses a trust that I want to have too. We may feel lost, ruined. But God is in the business of bringing Good from what seems like a tragedy, in the lives of those who trust Him. That's just Who He is.
Dave's parents just texted. They will be arriving in Calgary at two this morning! They will be staying at our house while we are at the Hospice. It will be great to see them and share Rachel (and her smiles) with them.