It's been a crazy few days adjusting to home life with 3 girls. Discharging from the hospital went pretty smoothly. Joe and I got to the hospital about 7am Saturday morning. We packed up as much of her things as we could into our suitcase. We didn't realize how much stuff Lily had, so we couldn't fit it all! Thankfully, the hospital offered to have it shipped home for us, so we left a couple bags of clothes and decorations for them to send us. We went through some discharge instructions with the nurse, and we were officially discharged at 9am. We headed for the front door and ordered a Lyft to the airport. Our social worker at BCH set us up with something called MassPort, and it was so helpful! A man met us right outside the Southwest entrance. He walked us through checking in and brought us to security where we had special treatment to get Lily and all her equimpent through. Then he walked us to our gate just to make sure everything went smoothly. Big shout out to Scott, our social worker for setting this up for us and for all of the other great resources he connected us with.
Unfortunately, it was downhill from there. Shortly after we sat down at our gate, Lily threw up. Like a lot.. until her stomach was empty. We used every burp rag we had packed in our carry on. It was on her, it was on us, it was everywhere! The poor thing passed out after that. Once we boarded the plane, we tried to put on her nasal cannula for the half liter of O2 she was supposed to wear during the flight. She HATED it. I don't know if was because she was already upset from throwing up so much and all the change in scenery or what. We tried for a while, and then just turned up the rate and held it to her mouth for a while. She hated that too 😞. Thankfully, she didn't seem to mind take off or landing at all. When we landed in Baltimore, we went to our next gate and set up camp for the couple hour wait. Unfortunately, there are no direct flights from Boston to Grand Rapids. Lily fell asleep and it was going well. Then just before we boarded our second flight, she threw up again. We had her feeding pump and formula in a little back pack hooked up to her throughout the day since she is on continuous feeds.
The second flight went much better! She was even being very social. She was leaning over Joe's arm so she could watch all the people board the plane :) My dad picked us up in GR and we got home about 6pm. I had reached out to our church family about a month ago with a request for help with decorations. I wanted to have something special for Lily's homecoming, but I knew I wouldn't have time or energy to work on it. Several ladies from our church stepped up and made, delivered, and set up some beautiful and fun decorations in our house and outside the house. It was really special and I'm very grateful for this. Rose was SO excited to see Lily and give her stuffed animals. She was very interested in Lily's "tubes" but has done a great job listening to us and not playing with them. Lily has continued to struggle with refulx. She has thrown up or spit up several times every day since being home. Today is going much better so far (knock on wood). My mom is staying with us this week, which has been wonderful! My dad was here last week, and he's coming back next weekend.
It's been busy with doctor appointments and visits too. We had a visiting nurse come for our initial appointment, we had a physical therapist come to the house, our regular nurse, and we will have OT come tomorrow. Tomorrow is also her appointment with her pediatrician. Joe and I took Lily to Helen DeVos for a hematology appointment yesterday to follow up for her blood clot. She will continue on the lovenox for 3 more weeks, have an ultrasound, and then stop the lovenox as long as the clot is unchanged. She will have a lab draw to check the lovenox level next week. Giving the lovenox shots is going ok. She doesn't like it and neither do I, but hopefully it's just for a few more weeks.
Today, the Boston EA team is having a conference call with our surgeon here, Dr. Pennington to discuss Lily's care and follow up. We're hoping they might be ok handing Lily off to the team here in GR, but they may decide that Lily should go to Boston for one more EGD in a couple months.
Lily has a lot of developmental things to work on. She's understandably behind in a lot of skills and milestones. We are working on tummy time, but she will likely need to get a helmet too because of her head shape. She is rather flat in the back from all her time in the hospital. Getting home was a huge hurdle, but she still has a long way to go for recovery and growth. We are so grateful for all the support so far, and we appreciate your prayers moving forward as well. It's a huge adjustment having Lily home, but we are so glad to be all together for the first time!!
