SO! Here is our longer update of yesterday’s events.

All things considered, Leah had a pretty good morning yesterday. She did spend a good half hour scolding us for not serving breakfast, but I’d be pretty mad if I had to skip a meal too. Wait. Ha. Let’s make that Mandy. Mandy would be pretty mad if she had to skip a meal too. (I seriously wrote that without thinking.) Considering that sometimes she starts getting angry when her food is not EARLY, I’d say things could have been a lot worse. She was generally pretty smiley for most of the morning. It’s like she knew it was going to be a good day. She fell asleep before they came in to prep her for transport to the OR, so she slept through most of the trip and was overall very calm. The last time we went down to the OR with Leah she started crying once we got downstairs. This time she was pretty chill. She is such a good baby. We were definitely more agitated than the baby was!

After they rolled Leah away at around 1PM, we met my dad, Mandy’s mom and cousin Beth in the waiting room. The surgical team’s nurse practitioner had told us that they should know within about an hour and a half how they would be proceeding, so it was really that first major period of uncertainty that we knew would be the hardest. We couldn’t stay in the waiting room. That room is just too tense and anxiety-filled. So instead the five of us had a nice lunch at a nearby cafe and then killed a good 30-40 minutes browsing in a little shop across the street. It was the perfect distraction, although I’m not sure my dad enjoyed it quite as much as the four ladies did. 🙂 Then Beth and I headed back to RMH for a little bit and the rest of the group went back to the hospital to wait for news.

It turned out to be more like two hours before we heard any news, but the news we got at that point was worth it: They told Mandy that they were pretty sure they were going to be able to do the primary repair. OH EM GEE. That is not the news we expected, but it was damned good news! We’ll take it! When Beth and I got back to the hospital, we all waited for them to bring Leah back. Shortly after we arrived, the nurse told us they would be bringing Leah up in about 40 minutes. That made us pretty nervous – or at least it made ME nervous. They had told us the Foker procedure would be pretty quick, a few hours, but that if they did the primary repair it could be as many as five hours. At this point it had barely even been three hours. I was sure they’d had to resort to the Foker procedure. At around 4PM the surgeons came in with big smiles on their faces and gave us a thumbs up. They were able to connect the pouches! Holy moly! Good news! They showed us a picture (yes, in full color) of the two pouches before they stretched them out, and then explained how the procedure had gone. They were very pleased with the outcome. Everybody was very pleased with the outcome. “Very pleased” is like, the understatement of the century. Yeah. Leah returned to the room about half an hour later. Yay!

So the pouches are connected. There is a good amount of tension on them because they really had to stretch them to get them together, but they said they have ways to distribute the tension so that it’s less likely to tear. Leah has to be sedated and paralyzed for at least three days – probably until Monday – because if she moves she could tear the sutures. In about a week they will run a contrast study to confirm that everything is still intact and that there have not been any tears, leaks or strictures. At that point, if all goes well, they will be able to begin the next step of Leah’s recovery: teaching Leah how to feed orally. As far as I know, her release from the hospital is still anticipated to be at least a month, as she has to recover and be monitored now and also once she begins to feed. But yesterday was a huge step in the right direction.

As I mentioned, the biggest concerns in the coming days are tears and leaks. Another major concern is pneumonia. The last major concern right now is that Leah needs to stay paralyzed and unconscious for the next few days. Children with Down Syndrome can have a high tolerance for pain medications and sedatives. Last night Leah tried to open her eyes a couple of times when she knew we were next to the bed. They have already had to increase her dose of Fentanyl and also add another sedative on top of that. The paralytic is administered every hour, and I’m told that as she gets closer to the end of the hour she starts stirring a little bit. Today’s nurse said the sedatives and paralytic are barely doing their job. She will need a lot of monitoring over the next few days to make sure that she doesn’t wake up. There is a chance that they could have to raise the dose again (and again) and eventually her body could become addicted to the sedatives, which would mean she could go through withdrawal when it is time for them to stop. We’re hoping that because she will be under for such a short period of time we won’t need to get to that point. Let’s hope not!

That’s about all the news we have at this point. I just want to take this opportunity to thank you SO MUCH for your comments and messages and texts and voicemails and other words of encouragement yesterday, for changing your profile pics to support Leah, and for all of the positive thoughts and prayers and energy being sent in Leah’s direction not just yesterday but throughout her hospitalization. (Also for the delicious sandwiches for dinner. You know who you are – thank you!!!!)

All of you really made yesterday SO MUCH EASIER to get through. It was such a comfort to wake up and see our kid trending in my newsfeed. There was a lot of, “OH, look what X posted! Awwww, look at this text from Y! Awww, did you see Z’s comment?” going back and forth between Mandy and me. Also… I may or may not have had my nose buried in my phone through most of lunch, most of the walk to and from the restaurant and RMH, most of the rest of the wait for BabyPie to get out of surgery, most of the time they spent setting her up once she was back, when we couldn’t be underfoot… I’m just saying. Your constant support yesterday kept us from going totally crazy obsessing over every minute we didn’t hear from the docs. And I KNOW that Leah felt all that love being sent out to her. I bet she even felt it in the morning. Maybe that’s why she was smiling so much. 🙂

Okay… pictures! There are not too many, but here you go! BTW, Aunti Staci has been spearheading the t-shirt project and we should have the shirts by the end of the weekend!! So excited for that. We will keep you posted and you’ll hear from us soon if you requested a shirt.

This is the smallest surgical gown they had. It almost fits her.

Leah slept through all of the prep!

This is what LeahBug looked like yesterday afternoon when they brought her back. I don’t think she had this many wires and tubes even when she was first born!

A little gift from our friend Jennie. It brought a big smile to our faces after a really difficult day. Thank you, Jennie!

BabyBug this morning. She’s so beautiful even with all these tubes attached.