Tuesday, August 24, 2010

Tuesday, August 24, 2010

Caleb is one week old today. What a week it has been!

They were able to remove the light for the jaundice this morning. Caleb got rid of his fancy sunglasses and I was able to see his eyes again.

He was pretty stable throughout the night and morning, so they decided to try to close his chest this afternoon. The doctors figured that they could see if there was a clot pushing on something, causing the difficulty in getting blood to the lungs under a normal blood pressure. They started the procedure at 1:00 pm and said that is normally takes an hour and a half, but to figure a little longer with Caleb's tendency to overreact to everything. They wanted to go slow and see how things went.

I checked on him at 3:30 pm, and the surgeon met me in the hall and said that they were going to open the chest back up. They had gotten him closed, but his oxygen levels and blood pressure were quite low and they were not comfortable leaving him that way overnight. He was not necessarily in danger, but they didn't want him to crash when someone turned away for a second or to require emergency surgery in the middle of the night.

At around 5:00 pm, I found out that opening the chest back up went fine and that Caleb had done a decent job of getting stabilized again. The only ground we lost was that they had increased the oxygen level on the ventilator from 50% to 90%. We now know that there is nothing pressing on the heart or shunt. That makes one less variable in the equation.

Now, we are faced with two options. One is to wait another 48 hours and see if he can get stronger and get over this hump. Caleb seems to make some progress, but not enough to get to where he needs to be. The other option is to modify the shunt - whether it is the size, location, etc. - to better fit Caleb's situation.

As of right now, his lungs look and sound great and do not seem to be the problem. The issue seems to be one of plumbing. Most likely, something will be done to modify the situation in the next two days.

The good news is that everyone seems to think that this can be fixed, when we can find the right solution. No one has told us that we are running out of options and although we still aren't sure what the deal is, we know how to keep Caleb at levels that are not critical at this point. The problem is that we don't want to stay at these levels forever, we want to get him patched up.

Our new neighbor in the PCTU is a six month old girl with a condition similar to Caleb's (a very undersized right side of the heart). She was in the hospital for less than two weeks after her first surgery. She just had her second surgery yesterday and she is already off the ventilator, sucking her pacifier and pinker than her parents have ever seen her. It is nice to see that it can be done and to think that perhaps Caleb is taking care of all of his drama during this surgery and the next one can be much less complicated.

The parents of this baby have been a huge comfort to me. They know the ins and outs and have a lot of good information. The mother reminded me that if Caleb needs surgery again, his chest is already open and all of the other repairs have already been made. Most likely, a second surgery would be much less involved than the first and should cause less stress on his body. She also reminded me how strong and resilient these babies are. Angels don't just come disguised as doctors and nurses!


  1. Jen there are more angels than we think, just ask Maeve. Praying for you and Caleb.


  2. Thanks for the update! Still prayin'! Love you and Caleb.

  3. I read the updates every day. Thank you for sharing your story. Caleb is beautiful....love those chubbie cheeks.

  4. Great updates! Wishing all the best for Caleb and the whole family. Joey had those funky sunglasses - so cute! Betsy

  5. Jen we want your to know our family is praying for caleb and your family to get thought this all
    lloyd &ann seese

  6. Marcia BossenbroekAugust 25, 2010 at 9:00 PM

    happy 1 week birthday caleb!!! our prayers continue to be with you all.