Happy Father's Day Joe!

Lily made a gift for her daddy

We love ice cream and we love Joe!

Girl dad 💜

😂

Boston Plans

We've decided to all go out to Boston together! Trying to coordinate and plan the back and forth and daycare was getting very complicated (and expensive), so we decided to keep the fam all together. It might be hardest for Rose to be away from home for a month, but at least we will all be together. We're planning on driving there, leaving on July 12th and staying overnight somewhere half way there. Google maps says it will take about 13 hours driving. We'll arrive July 13th, the same day Lily will be flown there. The hospital hospitality program set us up with a one bedroom apartment for the first 3 weeks at a very reduced rate. If she is there longer than 3 weeks, we will need to find another place to stay, but the person I was talking to seemed confident that they could help us with that. Thankfully, Joe's supervisor and boss are very understanding and he has had no problems taking the time off. My coworkers stepped up and are willing to cover all my shifts for that month. We are so grateful for amazing coworkers!! Please continue to pray for us as we plan for the trip and for Lily's homecoming (ahh! can't believe we're finally starting to talk about it!).

The hospital has a strict visitor policy right now that only allows parents to visit. That means one of us will stay in the apartment with Rose and Cora, while the other visits Lily during the day. The apartment is close to public transportation that runs right by the hospital. It also looks like there is a Trader Joe's and plenty of restaurants nearby the apartment. Hopefully, we can find some things to do with the other two girls during the day. There's still a lot to figure out, but it feels very reassuring now that we have a plan! Thank you for your continued love and support! We really do have an amazing community of family, friends, coworkers, church members and others supporting us in so many ways.

Had fun celebrating our nephew's birthday this week! 

Surgery Date

 July 16 is the day! I heard from Boston Children's Hospital's admission coordinator yesterday. She said that Lily is booked for surgery on July 16 and that they will have her arrive the 12th or 13th. That's about all I know right now, but it is both tremendously exciting and scary at the same time knowing we actually have a date. We're not sure yet if Cora will be allowed in the hospital. Like here, their visitor policy says 2 adults are allowed, but no one under 18 including siblings. I've emailed a social worker out there to hopefully get some more information. She sent me a housing application form. They have housing for families close to the hospital and they have shuttles that go back and forth. We're hoping to get in there if they have the availability. If not, there are hospitality hosts (kind of like Air BNB) that we can apply for. Just wanted to give the update! Please pray for us as we try to figure out how we will handle her time out there. We haven't decided who will go out there and for how long. It's complicated with 2 other kids, jobs, COVID, etc.! 

A Brief Intermission

Just wanted to take a break from hospital life to share some of these pictures of two of the cutest little girls there ever was. And that's my true, honest, unbiased opinion.

/Joe

Back to NICU

Lily is doing much better today. She's up to her regular feedings now and no longer has any IVs or tubes other than her normal feeding tube and replogle. Yay! It's crazy to me how quickly she is recovering from a major surgery. She's fierce! She transferred back to the NICU this afternoon and is settled back in her old room. Now we wait for Boston to have an opening for us. One big hurdle down! Thanks again for all your prayers!

Post Op Day 2

Progress! Lily was extubated this morning with no issues. She's breathing well on room air. She had her foley catheter and one of her IVs removed. Her swelling has also gone down, so she's starting to look like her normal self. Unfortunately, because she's awake and alert now she is also starving. She didn't eat for over 2 days. Even though she's never had anything to eat by mouth, so was trying so hard to eat her hand today :( They have started feeding her now, but they have to start small. She's only getting a small portion of her normal feedings, so she's still very unhappy even after they feed her. It's hard on us to see her so upset. It will take about 3 days to get her back up to her normal feedings.
Tomorrow she will get her pacing wires removed and she might go back to NICU. Otherwise it will be Tuesday. Thanks again for all your prayers. Some of Joe's family stayed with us this weekend to help take care Cora and Rose while Joe and I spent so much time at the hospital. We're very grateful for their help too.

Post Op Day 1

Thank you for all your prayers and support yesterday! Lily had a good night last night and things are going well today too. She is still sedated and intubated, but they want her heart to rest right now. She had 3 chest tubes in after surgery, but those just came out, and they also took out her arterial line today. She's a little puffy from all the fluid, so she's getting some lasix to help her get rid of extra fluid. She still has a couple IVs, central line, external pacing wires, and foley catheter. She looks comfortable most of the time, but she does kick a little bit and briefly open her eyes. They did an echocardiogram this morning and that looked good. She also had a chest xray which showed some extra fluid, but that is expected I guess and should be improving. Her lab values all look fantastic. Summary: she's doing everything she should be. They are planning on extubating her tomorrow morning.

Just like her first heart surgery, it was really hard to see her like that,  but we know that ultimately she will be better off now that the surgery is done. She'll be in the cardiac ICU for a few more days and then go back to NICU until it's time to go to Boston.  Thanks again for all your love support!!

 Before surgery and a brief moment without her replogle