So! There is a plan.

We spoke with Leah’s surgeon this morning, and it sounds like we are getting back to what we originally anticipated: They will aim to perform the Foker procedure, in which Leah is immobilized (it basically sounds like an induced coma) for anywhere from 3-12 days while they attempt to bring the proximal and distal ends of her esophagus toward one another. They do this by putting sutures in the ends of each pouch and putting tension on the sutures each day to encourage the tissue to both grow and stretch. Some doctors will allow the procedure to go on for up to a month, but Leah’s doctor seems not to agree with that approach.

The surgery will likely take place at the end of October. It would be a bit earlier in the month, but the surgeons will both be out of town at various points in the month, and the one with whom we spoke today said he doesn’t want to be away while Leah is recovering, because vigilant monitoring will be critical to her recovery, particularly if complications arise. Recovery time in the PICU following the procedure is about a month, though it could be longer for Leah because Down syndrome can slow the healing process. Once we take her home she will need extensive OT/speech therapy and monitoring, as there are several complications that could occur which would result in the need for additional surgery. I think it’s pretty safe to say that she will be coming home with the g-tube and will continue to rely on it for some time.

If the Foker procedure doesn’t work, or if the docs see the gap “face to face” and decide it’s just too long to perform the procedure safely, they will do an esophagostomy, also known as a “spit fistula,” in which they bring the esophageal pouch out through the neck to let it drain externally (I guess they would create a hole in it). At that point we would bring her home and then return when she is about a year old for any one of several alternate methods of repair, most of which involve using tissue from other parts of the digestive system to create a makeshift esophagus. While the latter approach would get her home sooner in the short-term, a successful Foker procedure would give Leah the best chance of ever eating normally – so that’s what we’re hoping for.

So there you go. I’ve been saying it would be great to have Leah home by Thanksgiving, but I think it would be more realistic to hope for a return home by the end of the year. That leaves us with another 3-4 months in this limbo, staying at Ronald McDonald House and spending as much time as possible by Leah’s side in the PICU. If you haven’t already shared our GoFundMe link with your social networks, we would appreciate it so much if you would – and please encourage them to share as well! The link is http://www.gofundme.com/leahandhermoms, but you can use http://www.leahbug.com as a shortcut.

Thank you again so much for your continued support and your sweet comments and happy thoughts and prayers. You’ve helped us through this so much. October and November are going to be particularly difficult months but it makes us feel better to know that there are so many people who care about Leah and her progress and who will continue to send her good energy throughout her surgery and recovery. Much love to you all.