He was awake for such a long time today that I eventually got the camera out. I took some video (still learning how it works). He is sweet and cute as always, and you can see his swollen belly. In the background, you can hear Brandon talking to Caleb and our niece Maggie. You can also hear the shrill screaming of Jude's bed warmer right about in the middle of the video. Sorry about that. I think I'd recommend watching the video with the volume off. :-)
It was another hard day. The incision leaked again, and so the neurosurgeon made another visit. This time, he put in a few more stitches with an added dressing that is putting more pressure on the incision. We were told that sometimes these cases can be resolved in this way...that eventually they just stop leaking. We were also told, however, that 99% of surgical incisions don't leak like this. Jude falls in that 1%. We were sad to hear that, and we don't know what it means if his incision doesn't heal. It started leaking again after the neurosurgeon left when the nurses were applying the new dressing. So, hopefully the added pressure and the bandage is enough to end the leaking...because the stitches didn't seem to be enough. Please pray still for an end to the leaking...for healing for his incision so he can have his heart surgery.
We also had another conversation with another doctor about Jude's future. With each new hospital, we have to get to know the doctors and nurses all over again. They need to know what we understand about our little boy's condition. I sometimes think they don't believe we understand how sick he is because of the way we are responding. They also want to make sure they are on the same page we are as far as how much care they are giving him. With different levels of directness, these doctors have wanted us to know that they will give him as much or as little care as we desire. Obviously, we want them to do everything they can.
So, as you can imagine, this has been another hard day. Pretty heartbreaking. We've cried a lot, and we're tired. We know that God still has plans for this little guy. We know that God is still good. We know that we can still trust Him, and we are clinging to His promises.
Today, my tiny baby received stitches in his head. I watched for the few minutes I could tolerate. I watched him go through something painful, and it hurt me to see it. I ache even now as I think about it. But, I knew that he needed it. I knew the bigger picture. I knew that although he couldn't understand the "why" behind it all, we did.
We don't completely understand the "why" behind what we are going through with Jude. Right now, we are hurting. We are in pain. It's easy to get overwhelmed by the daily ups and downs. But, the Spirit of God reminds us to step back and see that the daily ups and downs aren't everything...they aren't the big picture. These days are just a few paragraphs in this story that Jesus is authoring.
What we do see clearly is that we have a Father who loves us...who wants what is best for us. We have a Father who is wise and all-knowing. He knows what is best for us. We have a Father who is all-powerful and can do anything. He will bring about what is best for us. Our Father is trustworthy and good. Yes, this hurts. But, we can't understand everything. He can.
Thank You, Father. Thank You for your goodness displayed in our lives. Thank You that you sent your Son into the world to die in our place. Thank You that You understand...and that You care more than we can comprehend.
"This is how God showed His love among us:
He sent His one and only Son into the world
that we might live through Him.
This is love: not that we loved God
but that He loved us and sent his Son
as an atoning sacrifice for our sins."
1 John 4:9-10