Last time we wrote was Thursday. We had learned that day that we were scheduled for surgery to replace Henryk’s shunt today (Wednesday). We also noted that Henryk started vomiting on Thursday, likely due to pressure in his head. We called the neurosurgeon about this on Friday to see what we could do and he said that the sickness would make moving up the surgery unfavorable. To do an emergency surgery in this situation is dangerous.

As the days go on, Henryk continues to vomit and occasionally pause breathing. We did some lab work that came back good enough for the surgeon to say he would operate today, but Henryk is just so frail we decided not to do it. If something would happen during or just after surgery it would be a sad way for him to go. We will just have to see what Henryk does moving forward. If he somehow gets better and starts eating again we will do the surgery later.

Other than surgery the only medical route to go for him would be to give him IV fluids. But this is not a long term solution, and in fact can be quite uncomfortable. If the body is truly shutting down it does not want that fluid, so it can go places it doesn’t belong like the lungs or extremities.

Death in this manner (loss of appetite) for babies can be a slow process.  Like a flower dying, they just kind of turn in on themselves and slow down. But it is not an uncomfortable way to go and we have plenty of medicine to soothe him.

This has been very mind twisting for us and has caused us to really face our fears about Henryk. We have realized we are terrified of the coming grief and do not want to feel like we are letting him go. One thing we did which has helped us greatly is some in-depth Bible study and research on what happens to babies when they pass.  This was to deepen our convictions together as parents for our child.  Based on various scriptures and articles we have read we conclude that due to Jesus’ grace bought on the cross Henryk will go to heaven when he dies. So if we truly believe what we say we believe, we trust that Henryk will be better off with Jesus than with us. Hard for parents to grasp.

Since we found out about Henryks problems seven months ago, God has not given us any of the circumstances we have prayed for. In fact, quite the opposite and then worse. Every time we have said, “Please God, as long as …… doesn’t happen,” that thing has happened.

However, that is not the complete picture. God has answered every prayer for wisdom with conviction. He has answered every cry of, “We can’t do this anymore,” with grace. He has given us direction for Henryk’s little life so that we do not have questions or regrets about our part in the turns it has taken. And as we were praying about this very thing the other night we realized that’s quite an amazing life for him to be given. And it’s quite a gift to his caretakers. God has helped us continue to walk by faith and deepen that faith in profound ways we never thought possible.

So today instead of surgery we celebrated Christmas. We really wanted to make sure Lily has memories of Chistmas with Henryk. Yesterday we decorated the tree. This morning we made a trail of marshmallows from Lily’s bed to the tree (she thought it was snowing inside) and had them both open gifts (or rather had Lily open gifts for both of them). We got Henryk a Baby’s First Christmas ornament and re-gave him some of the special gifts that our friends have given him.

Pastor John Piper said recently at the Desiring God Disability Conference that I thought was helpful as we face this grief with Henryk: “God is always doing ten thousand things that you do not know about. You may know three of them.”

http://www.desiringgod.org/blog/posts/now-available-disability-conference-audio-and-video

A passage that has been helpful to us these past days is Psalm 34:17-18:

When the righteous cry for help, the LORD hears
  and delivers them out of all their troubles.
 The LORD is near to the brokenhearted
  and saves the crushed in spirit.

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