After 254 days (8 months and 1 week) Emma is going home!! We did it!! I woke up early on her discharge day to finish packing, and thankfully she slept in. We had a constant stream of our care team coming in and checking on her one last time. I was a nervous/ excited wreck the entire morning. Finally, once she woke up, I changed her outfit to a onesie that we bought for her when she was in the NICU. It said “I’m home- sweet home!”. It was absolutely perfect. Then I got her bed wedges and blankets packed. My father-and sister-in-law came up right before our discharge time to take all of our stuff home. The ride in the ambulance could only take Emma in I in her car seat, her emergency bag, and my purse- that’s it! There still was a little confusion getting her connected to the home vent, but it worked. Then the EMT’s came and we strapped her car seat to the stretcher. As we walked out, her nurses cheered and said goodbye to Emma. It was a super touching moment! Then the long walk to the doors outside, where Emma had her panic/ hyperventilating moment whenever she goes outside. I don’t blame her- it was cold! After Emma and I were secure in the ambulance, we finally left. She calmed down, and was wide-eyed, taking it all in. Then, for the majority of the trip, she slept! I mostly talked to the EMT’s trying to distract me as I was getting super nauseous from the car sickness. For the last 10 minutes, Emma woke up and was not comfortable at all, and started crying. We finally drove up to our driveway and I noticed 2 welcome home banners and TONS of cars. They backed us up right in front of the door on our lawn, and lowered her stretcher and took her inside. She stopped crying at this point and was trying to take it all in. She looked very much overwhelmed. When we came inside, there were more banners, balloons, and flowers. We then took her and all her equipment in her room, and I put her in bed while the two home equipment RT’s set up the home vent. It was concerning though, as they didn’t really know what they were doing! Emma finally got put on her home vent, then went to sleep. I then had to tackle the many people and the boxes. There were home health people, the EMT’s, nursing agency coordinators, and nurses. And all had to talk to us and ask questions. We were SO exhausted. It also took me 3 days to organize and unpack all the items and find places for them. We weren’t allowed to do that until she got home, and I was going crazy not having things organized already. Dustin worked hard to make the shelves for the baskets and containers in her room. We kept getting even more supplies shipped to us in the days after!

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The next day, we started having Emma wear her helmet. She had to wear it for an hour, then off for an hour, throughout the day. The next day she would be wearing it for 2 hours, then 4, 8, 12, then 23 hours. She would get so mad when we put it on, then was okay after 5 minutes. Then about 1-2 hours later would be drenched in sweat. The second day of wearing it she even got a little pressure sore. We felt so bad! Dustin kept trying to hide the helmet from me so we didn’t have to put it back on. Poor girl. We also started to slowly introducing Emma and Luna together. Luna kept trying to smell her- she remembered her scent from the outfits and blankets we take home to wash. Once we get Luna close enough to lick her, she pretty much let her be and ignored her. Emma didn’t have much a reaction to Luna either. She would watch her walking around, and squirm when she got licked, but no big reactions like at the hospital with the therapy dogs. Its definitely not what we thought would happen!

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Another shocker, is that we were told that 2 of our nurses quit- our day shift nurse and one of our night nurses. The nursing agencies are training someone else, but we would have to cover for them. Apparently one nurse was overwhelmed and quit and the other got a raise form her other job and was bribed to get more money, so she dropped us. That was an awful thing to do! So, we didn’t get our 24-hour nursing for the first week like insurance required after all. I was nervous about that, but it ended up being wonderful. We were able to play with her without someone watching and we could finally relax! Sometimes I feel like I have to push my way in to take care of my baby when there is nursing. But the first two full days were great. It was our first time alone in our house as a family, reading books and cuddling in our rocking chair in front of our fireplace. Bliss!

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The following day, Dustin had the power company come out to hook up the stand-by generator. We had to buy one so when the power goes out, we have power to our outlets for Emma’s equipment. They had to turn the power off for a couple of hours. We had the fireplace going, all of Emma’s equipment charged, and the vent plugged into my father-in-law’s portable generator. It was a little stressful trying to get things settled for no power, in the dark morning, but it ended up being pretty easy. It was humbling too, as the propane company found out about Emma and decided to donate the huge propane tank for the generator! We were so grateful. Later that day we also had Emma’s first doctor’s appointment in Olympia. It was a little crazy getting things set up in the car, and we ended up being 20 minutes late. Between walking to the clinic from the car, Emma had a desat episode! We were thinking she had a freak-out moment being in the cold, along with the weird vent circuit, she was overwhelmed, and had some secretions. Between all that, she couldn’t breathe, but we got her back to normal shortly after going inside. The visit was super short, as her pediatrician just wanted to do a meet-and-greet. Once we got home and we put Emma on the home vent circuit setup, Emma was happy again. We did it!