Wow - today was a busy but good day. Claire's weight was down last night of course due to the draining. She weighed 7 lbs 2 oz. She is now on all breast milk feeds, so we will see how that goes. At rounds this morning, her attending basically said there were three options that they would choose from at the big meeting today:
1. The severe choice - This would be to resect/remove all of the liver cysts now. This would include removing her entire right lobe (which is all the big and medium cyst) and then cutting out the other smaller cysts. This is a 5 hour surgery and very, very risky at this point.
2. The middle of the road choice - To marsupialize the biggest cyst now. This would be about a 1 hour surgery with an incision (not laproscopic). They would basically cut a hole in the big cyst and then let it drain into her abdomen to be absorbed by her bloodstream and then eliminated through her urine. This would give them the tissue sample they have been wanting and needing to confirm what these cysts really are. Then come back later and remove all cysts.
3. The last choice - To sclerose the liver cysts. This would be draining the big cyst and going in and injecting some sort of material that would kill the liver cyst cells and basically fuse them together to make the big cyst a big scar. The upside to this would be no real surgery. The downside to this is that she would either have to live with this huge scar tissue in there forever, or it would be a very difficult surgery to remove the scar tissue later. Plus they would not get any tissue to test to be 100% sure what these cysts are.
So while we waited most of the day for the decision, we had fun! Claire was making up for lost time and eating like a pig today. I think she could have eaten us out of house and home if we were home! Having more space in her belly makes it so much easier to eat. She is consistently eating about 120 mLs each feeding about every 3 hours. That's about 4 ounces.
We also went over and visited Eliza at her crib! Eliza had on this totally cute flower head band, so Claire had to put on a bow head band and we HAD to get some pictures!!! What a fun adventure! Granny Mary went to Accidental Artist this weekend and bought some tiles and paint. So I painted Claire's foot with pink and brown paint and we made some foot prints on the tiles.
The new baby Claire was also born today and is so beautiful! We cannot wait to meet her. Our Claire will be back in ICN next week when she has the liver surgery next week so we will have to stop by the new Claire's room and meet her!
So at 4 pm, the neonatologists came in and told us the plan. Thank goodness everyone was able to attend the meeting (except us) - but all the doctors were there. They all agreed that the middle of the road choice was best. That Claire was just too small to undergo the 5 hour resection surgery at this point. And the cardiologists don't want to do her heart surgery any earlier than they have to and her heart is in good condition. So Tuesday next week, they are planning to do the marsupialization of the big cyst. This will entail putting her to sleep, intubating her, cutting her open, and sewing her back up. She will go back to the ICN for a few days until she's extubated and back to eating like she should.
Then they HOPE she can go home for several months until maybe April - June. Then she would come back for her heart repair, and go home again. Then come back at some point and resect all of the liver cysts. This is the PLAN. We all know how these plans work. We have determined the word "PLAN" is just another one of those four letter words. So, we will see how it all shakes out.
The liver surgeon is supposed to come by tomorrow and talk with us about the procedure and everything. The neonatologist did say that a person only needs 10% function of their liver to live, so that's a good bit of information to know since they will probably eventually cut out more than half of Claire's liver.
So, thank you for all of the prayers for our Claire, the new Claire, Eliza, the nurses and doctors, our families, and every one else. Please be prepared to pull out all of the prayer stops for Claire's surgery on Tuesday (it will be Tuesday unless an emergency surgery comes up).
We will keep you updated!!! Enjoy the pictures!
The Scott Family