A Twist - Surgery for Vivien - Please Pray

After writing a new blog post and then seeing an e-mail that Todd wrote to our co-op, I realized that he wrote in a few sentences what took me a whole page to post. So here is the short version and then the more detailed medical layman’s version. Thank you SO much for all of your prayers!

Short Version by Todd:
What the doctors figured was a bacterial infection has likely been intestinal malrotation all along. The Ladd's procedure, to repair the malrotation, is frequently done on newborns, even those with compromised hearts, like Vivien. At the same time, they'll be placing a G-Tube, which will make feedings much easier. Please pray for stabilization during the procedure, especially for her heart. Also, that she would ventilate herself well once the surgery is over. And, of course for wisdom and skill for all those involved.

Long Detailed Version by Molly:
Instead of coming home early this week, the Vivien storyline has another plot twist - literally. After antibiotics and gut rest, the doctors began to reintroduce breast milk to Vivien very slowly. She seemed to be doing well for a couple of days and then on Sunday she began to throw up again and it turned yellow and then green. This was incredibly frustrating and the doctors were puzzled again and I just felt so grieved and upset that she was not getting better. Maybe she just hadn't healed and we reintroduced too soon? Could she be allergic to something in the breast milk?

They did another ultrasound and x-ray and thankfully, they saw something that made them take another route. Earlier on, a doctor that Todd had consulted on the phone with suggested an intestinal malrotation.

Vivien getting her ultrasound yesterday.
Picture via Todd's phone...

This means that her intestines would have somehow twisted or bent. She did well with eating and with her diapers in the first couple of weeks, but sometimes when something has not developed well in the womb, a malrotation can happen later on. While they had looked into this, they ruled it out as unlikely because of the way she was presenting, but after this second ultrasound they decided to go ahead and do the barium test. The result of the test is not completely conclusive but most likely she does have the malrotation and will require surgery.

At first this sounded very scary, but after hearing more, both Todd and I are very optimistic that this will solve the problem, and even be a benefit to Vivien and her care because at the same time they do the surgery, they are going to place a g-tube. A g-tube goes in the stomach and makes feeding much easier. The surgeon and the cardiologist both feel confident that Vivien will do well. The malrotation surgery called Ladd's repair  is often done on babies a week old and the surgeon told us that she has personally done this surgery on babies with Teratology of Fallot. (Vivien has three of the four heart conditions of Teratology of Fallot).

Because they are not absolutely certain this is a malrotation, they will only make a small incision and place a camera inside to make sure that it is. If it is, they will make a larger incision and do the repair, as well as the g-tube placement. A g-tube placement is a surgery that most likely we would be considering down the road. Most of the babies and children with T-18 that we know have a g-tube in and some have it placed when they are just a few weeks old. We are glad they made this suggestion since they are going to be opening her up anyway.

If she does have the malrotation, it would explain a lot and while surgery is not something I am happy about, it would mean that there is nothing wrong with my breast milk or the way we were feeding her. If it is not, we are back at square one, trying to figure out how to feed her again.

Vivien's surgery will be this Thursday at 1:00 so we would definitely appreciate your prayers at that time. Pray for Jesus’ protection on all involved. Pray that this will truly resolve this issue and that there will be no surprises when they open her up. Pray for the surgeon's hands, the anesthesiologist, for wisdom for all involved well as an uneventful full recovery. Pray that we will understand what her pain level is as she recovers and that we would not over or under medicate her. Pray for peace for her as well as for us. Thank you for all of your love and support!